I will be taking a short hiatus from blogging as I am dealing with some issues related to my Bipolar Disorder. I have been in a BD depression for several weeks now and have had some days so bad, I considered suicide.
The main issue is that I need to change my medications again as my current regiment has stopped working. I have been living with debilitating brain zaps that feel like an electrical current zipping through my brain. These leave me feeling dizzy and disoriented, and being on the computer is difficult during those times.
I will be back!! I refuse to let this defeat me, but I do need to take some time away until I have my BD back under control. It’s hard enough living with the physical pain of Fibromyalgia, Osteoarthritis, D.I.S.H., and more, but adding the mental health burden has become too much.
Thank you for your loyalty. Comments are appreciated.
April is Parkinson’s Disease Month and I wanted to talk to you all briefly about this condition as part of my mandate to highlight “invisible diseases”.
Although there can be some visible signs when you have Parkinson’s Disease, it often starts out very subtle and hard to notice. A tremour in one hand might be the only outward sign in the beginning.
Here is an overview taken from the Mayo Clinic website. Click on the link for the full description on Parkinson’s Disease including Testing, Treatments and Living with Parkinson’s.
Overview
Parkinson’s disease is a progressive nervous system disorder that affects movement. Symptoms start gradually, sometimes starting with a barely noticeable tremor in just one hand. Tremors are common, but the disorder also commonly causes stiffness or slowing of movement.
In the early stages of Parkinson’s disease, your face may show little or no expression. Your arms may not swing when you walk. Your speech may become soft or slurred. Parkinson’s disease symptoms worsen as your condition progresses over time.
Although Parkinson’s disease can’t be cured, medications might significantly improve your symptoms. Occasionally, your doctor may suggest surgery to regulate certain regions of your brain and improve your symptoms.
Symptoms
Parkinson’s disease signs and symptoms can be different for everyone. Early signs may be mild and go unnoticed. Symptoms often begin on one side of your body and usually remain worse on that side, even after symptoms begin to affect both sides.
Parkinson’s signs and symptoms may include:
Tremor. A tremor, or shaking, usually begins in a limb, often your hand or fingers. You may a rub your thumb and forefinger back-and-forth, known as a pill-rolling tremor. Your hand may tremor when it’s at rest.
Slowed movement (bradykinesia). Over time, Parkinson’s disease may slow your movement, making simple tasks difficult and time-consuming. Your steps may become shorter when you walk. It may be difficult to get out of a chair. You may drag your feet as you try to walk.
Rigid muscles. Muscle stiffness may occur in any part of your body. The stiff muscles can be painful and limit your range of motion.
Impaired posture and balance. Your posture may become stooped, or you may have balance problems as a result of Parkinson’s disease.
Loss of automatic movements. You may have a decreased ability to perform unconscious movements, including blinking, smiling or swinging your arms when you walk.
Speech changes. You may speak softly, quickly, slur or hesitate before talking. Your speech may be more of a monotone rather than with the usual inflections.
Writing changes. It may become hard to write, and your writing may appear small.
When To See A Doctor
See your doctor if you have any of the symptoms associated with Parkinson’s disease — not only to diagnose your condition but also to rule out other causes for your symptoms.
Causes
In Parkinson’s disease, certain nerve cells (neurons) in the brain gradually break down or die. Many of the symptoms are due to a loss of neurons that produce a chemical messenger in your brain called dopamine. When dopamine levels decrease, it causes abnormal brain activity, leading to symptoms of Parkinson’s disease.
The cause of Parkinson’s disease is unknown, but several factors appear to play a role, including:
Your genes. Researchers have identified specific genetic mutations that can cause Parkinson’s disease. But these are uncommon except in rare cases with many family members affected by Parkinson’s disease.However, certain gene variations appear to increase the risk of Parkinson’s disease but with a relatively small risk of Parkinson’s disease for each of these genetic markers.
Environmental triggers. Exposure to certain toxins or environmental factors may increase the risk of later Parkinson’s disease, but the risk is relatively small.
Researchers have also noted that many changes occur in the brains of people with Parkinson’s disease, although it’s not clear why these changes occur. These changes include:
The presence of Lewy bodies. Clumps of specific substances within brain cells are microscopic markers of Parkinson’s disease. These are called Lewy bodies, and researchers believe these Lewy bodies hold an important clue to the cause of Parkinson’s disease.
Alpha-synuclein is found within Lewy bodies. Although many substances are found within Lewy bodies, scientists believe an important one is the natural and widespread protein called alpha-synuclein (a-synuclein). It’s found in all Lewy bodies in a clumped form that cells can’t break down. This is currently an important focus among Parkinson’s disease researchers.
Risk factors
Risk factors for Parkinson’s disease include:
Age. Young adults rarely experience Parkinson’s disease. It ordinarily begins in middle or late life, and the risk increases with age. People usually develop the disease around age 60 or older.
Heredity. Having a close relative with Parkinson’s disease increases the chances that you’ll develop the disease. However, your risks are still small unless you have many relatives in your family with Parkinson’s disease.
Sex. Men are more likely to develop Parkinson’s disease than are women.
Exposure to toxins. Ongoing exposure to herbicides and pesticides may slightly increase your risk of Parkinson’s disease.
Complications
Parkinson’s disease is often accompanied by these additional problems, which may be treatable:
Thinking difficulties. You may experience cognitive problems (dementia) and thinking difficulties. These usually occur in the later stages of Parkinson’s disease. Such cognitive problems aren’t very responsive to medications.
Depression and emotional changes. You may experience depression, sometimes in the very early stages. Receiving treatment for depression can make it easier to handle the other challenges of Parkinson’s disease.You may also experience other emotional changes, such as fear, anxiety or loss of motivation. Doctors may give you medications to treat these symptoms.
Swallowing problems. You may develop difficulties with swallowing as your condition progresses. Saliva may accumulate in your mouth due to slowed swallowing, leading to drooling.
Chewing and eating problems. Late-stage Parkinson’s disease affects the muscles in your mouth, making chewing difficult. This can lead to choking and poor nutrition.
Sleep problems and sleep disorders. People with Parkinson’s disease often have sleep problems, including waking up frequently throughout the night, waking up early or falling asleep during the day.People may also experience rapid eye movement sleep behavior disorder, which involves acting out your dreams. Medications may help your sleep problems.
Bladder problems. Parkinson’s disease may cause bladder problems, including being unable to control urine or having difficulty urinating.
Constipation. Many people with Parkinson’s disease develop constipation, mainly due to a slower digestive tract.
You may also experience:
Blood pressure changes. You may feel dizzy or lightheaded when you stand due to a sudden drop in blood pressure (orthostatic hypotension).
Smell dysfunction. You may experience problems with your sense of smell. You may have difficulty identifying certain odors or the difference between odors.
Fatigue. Many people with Parkinson’s disease lose energy and experience fatigue, especially later in the day. The cause isn’t always known.
Pain. Some people with Parkinson’s disease experience pain, either in specific areas of their bodies or throughout their bodies.
Sexual dysfunction. Some people with Parkinson’s disease notice a decrease in sexual desire or performance.
Treatment
There are a number of different drugs that may be utilized in the treatment of Parkinson’s Disease. The most popular include:
Carbidopa-levodopa. Levodopa, the most effective Parkinson’s disease medication, is a natural chemical that passes into your brain and is converted to dopamine.
Fibromyalgia is a multi-faceted disease that affects far more than just your muscles. One of the common conditions that Fibromites experience is problems with their bowels. IBS or Irritable Bowel Syndrome can be a stand alone disease, but is often found in those with Fibromyalgia.
Symptoms
When you have IBS, you can experience some or all of the following symptoms:
Abdominal pain and cramping that is typically relieved or partially relieved by passing a bowel movement
Excess gas
Diarrhea or constipation — sometimes alternating between the two and occaisionally having both happen during the same bowel movement
“Symptoms occurring outside of the digestive tract that might be related to IBS include sleep disturbances, chronic pelvic pain, interstitial cystitis, temporomandibular joint disorder, post-traumatic stress disorder, and migraine headaches. Female patients who have IBS have also reported discomfort during sexual intercourse (dyspareunia). Our survey of 2,961 respondents showed 32% have some form of mood disorder, 27% have gastroesophageal reflux disease, and 27% have anxiety disorder.”
It’s important to seek medical care when you experience bowel issues, to ensure that nothing more serious is going on. Don’t let embarrassment stop you. If you are experiencing any of the following, call and make an appointment:
Weight loss
Diarrhea at night
Rectal bleeding
Iron deficiency anemia
Unexplained vomiting
Difficulty swallowing
Persistent pain that isn’t relieved by passing gas or a bowel movement
Seeing The Doctor
When you seek medical care for your IBS symptoms, the following actions may occur:
Medical History: A physician reviews the patient’s medical history, considering bowel function pattern, the nature and onset of symptoms, the presence or absence of other symptoms, and warning signs that might indicate some other diagnosis.
Physical Examination: During a physical evaluation, the bowel may have involuntary jerky muscular contractions (spastic) and seem tender; although the patient’s physical health usually appears normal in other respects.
Investigative Testing: A physician might request tests to rule out other possible diseases. In performing a scope, physicians view the intestinal tract with an instrument that enters the body via the mouth (gastroscopy) or the anus (colonoscopy/sigmoidoscopy). The scope is made of a hollow, flexible tube with a tiny light and video camera.
The physician may also request routine blood and stool tests to rule out known organic diseases. Some symptoms of celiac disease overlap those of IBS, so a family history of this disease might be a reason to test for it.
After other conditions have been ruled out, your doctor is likely to use one of these sets of diagnostic criteria for IBS:
Rome criteria. These criteria include abdominal pain and discomfort lasting on average at least one day a week in the last three months, associated with at least two of these factors: Pain and discomfort are related to defecation, the frequency of defecation is altered, or stool consistency is altered.
Manning criteria. These criteria focus on pain relieved by passing stool and on having incomplete bowel movements, mucus in the stool and changes in stool consistency. The more symptoms you have, the greater the likelihood of IBS.
Type of IBS. For the purpose of treatment, IBS can be divided into three types, based on your symptoms: constipation-predominant, diarrhea-predominant or mixed.
Treatment
Treatment of IBS focuses on relieving symptoms so that you can live as normally as possible. These suggestions below come from The Mayo Clinic:
Mild signs and symptoms can often be controlled by managing stress and by making changes in your diet and lifestyle. Try to:
Avoid foods that trigger your symptoms
Eat high-fiber foods
Drink plenty of fluids
Exercise regularly
Get enough sleep
Your doctor might suggest that you eliminate from your diet:
High-gas foods. If you experience bloating or gas, you might avoid items such as carbonated and alcoholic beverages, caffeine, raw fruit, and certain vegetables, such as cabbage, broccoli and cauliflower.
Gluten. Research shows that some people with IBS report improvement in diarrhea symptoms if they stop eating gluten (wheat, barley and rye) even if they don’t have celiac disease.
FODMAPs. Some people are sensitive to certain carbohydrates such as fructose, fructans, lactose and others, known as FODMAPs — fermentable oligo-, di-, and monosaccharides and polyols. FODMAPs are found in certain grains, vegetables, fruits and dairy products. Your IBS symptoms might ease if you follow a strict low-FODMAP diet and then reintroduce foods one at a time.
A dietitian can help you with these diet changes.
If your problems are moderate or severe, your doctor might suggest counseling — especially if you have depression or if stress tends to worsen your symptoms.
In addition, based on your symptoms your doctor might suggest medications such as:
Fiber supplements. Taking a supplement such as psyllium (Metamucil) with fluids may help control constipation.
Laxatives. If fiber doesn’t help symptoms, your doctor may prescribe magnesium hydroxide oral (Phillips’ Milk of Magnesia) or polyethylene glycol (Miralax).
Anti-diarrheal medications. Over-the-counter medications, such as loperamide (Imodium), can help control diarrhea. Your doctor might also prescribe a bile acid binder, such as cholestyramine (Prevalite), colestipol (Colestid) or colesevelam (Welchol). Bile acid binders can cause bloating.
Anticholinergic medications. Medications such as dicyclomine (Bentyl) can help relieve painful bowel spasms. They are sometimes prescribed for people who have bouts of diarrhea. These medications are generally safe but can cause constipation, dry mouth and blurred vision.
Tricyclic antidepressants. This type of medication can help relieve depression as well as inhibit the activity of neurons that control the intestines to help reduce pain. If you have diarrhea and abdominal pain without depression, your doctor may suggest a lower than normal dose of imipramine (Tofranil), desipramine (Norpramine) or nortriptyline (Pamelor). Side effects — which might be reduced if you take the medication at bedtime — can include drowsiness, blurred vision, dizziness and dry mouth.
SSRI antidepressants. Selective serotonin reuptake inhibitor (SSRI) antidepressants, such as fluoxetine (Prozac, Sarafem) or paroxetine (Paxil), may help if you’re depressed and have pain and constipation.
Pain medications. Pregabalin (Lyrica) or gabapentin (Neurontin) might ease severe pain or bloating.
Medications specifically for IBS
Medications approved for certain people with IBS include:
Alosetron (Lotronex). Alosetron is designed to relax the colon and slow the movement of waste through the lower bowel. Alosetron can be prescribed only by doctors enrolled in a special program, is intended for severe cases of diarrhea-predominant IBS in women who haven’t responded to other treatments, and isn’t approved for use by men. It has been linked to rare but important side effects, so it should only be considered when other treatments aren’t successful.
Eluxadoline (Viberzi). Eluxadoline can ease diarrhea by reducing muscle contractions and fluid secretion in the intestine, and increasing muscle tone in the rectum. Side effects can include nausea, abdominal pain and mild constipation. Eluxadoline has also been associated with pancreatitis, which can be serious and more common in certain individuals.
Rifaximin (Xifaxan). This antibiotic can decrease bacterial overgrowth and diarrhea.
Lubiprostone (Amitiza). Lubiprostone can increase fluid secretion in your small intestine to help with the passage of stool. It’s approved for women who have IBS with constipation, and is generally prescribed only for women with severe symptoms that haven’t responded to other treatments.
Linaclotide (Linzess). Linaclotide also can increase fluid secretion in your small intestine to help you pass stool. Linaclotide can cause diarrhea, but taking the medication 30 to 60 minutes before eating might help.
Potential Future Treatments
Researchers are investigating new treatments for IBS. Serum-derived bovine immunoglobulin/protein isolate (SBI), a nutritional therapy, has shown some promise as a treatment for IBS with diarrhea.
Studies also show that, in people who have IBS with diarrhea, a specially coated tablet that slowly releases peppermint oil in the small intestine (enteric-coated peppermint oil) eases bloating, urgency, abdominal pain and pain while passing stool. It isn’t clear how enteric-coated peppermint oil might affect IBS, so ask your doctor before using it.
Conclusion
Although Bowel related issues can be embarrassing, it’s important to acknowledge and treat your symptoms to give you the best health possible. Make time to reduce stress in your life, follow a proper diet and get a good nights sleep…these three things can make a huge difference in your gut health. If nothing changes, see your doctor. Your good health depends on it.
Living life with fibromyalgia comes with its challenges. The pain, fatigue, and brain fog can feel defeating and difficult to deal with. However, just because you are living with this tricky condition, it does not mean you cannot live a wonderful healthy life at the same time.
While it may take a while to find a combination of things that makes you feel the best and the strongest, you can take solace in the fact you will get there one day! You can live life well with fibromyalgia and in this article, we are going to give you some of the best tips for making that happen.
There is a wide variety of options to choose from but not everything will work for everyone. Your results and success will vary, so it is important to keep in mind that patience and experimentation is key to finding options that will work best for your body.
Seek Help from a Medical Professional
Although it may sound like an obvious thing, you need to make sure you are seeing a doctor or other health care professional to help you manage your fibromyalgia. Whether you are seeking treatment from a conventional doctor, holistic doctor, etc., keeping up with their medications, herbs, supplements, and the like will ensure that your condition is managed properly.
Untreated fibromyalgia will only get worse over time and leave you feeling sick, in pain, and completely depleted of energy. Therefore, it is key to stick to your treatment regime as defined by your doctor of choice.
Exercise
Although exercise might be the last thing you want to do when you feel like you are in so much pain, keeping an exercise routine will actually help manage your pain and other symptoms. Namely, it can be extremely beneficial for managing your fatigue.
You don’t need to go crazy with exercise though. Simply walking and swimming on a weekly basis is all you need. About 20 to 30 minutes per session 3 days a week is enough to feel the effects.
Another great way to build your strength is through weight training. Speak with your health care professional about the proper way to go about including this type of exercise into your workout regimen.
Get Enough Sleep
As with everyone, getting enough good quality sleep is important to feeling your best on a daily basis. But getting more sleep is even more important for those suffering from fibromyalgia. It can be difficult to sleep well with this condition because of the pain, restless leg syndrome, and the challenges of getting comfortable in bed at night.
But a few tips will help you sleep better at night.
If you go to sleep ad wake up at the same time each morning, this establishes a routine for your body. Eventually your body and brain will learn the time frame in which you sleep, and it will make it easier to go to sleep and stay asleep.
You can also take some time to wind down before going to sleep. Take a bath, diffuse some calming essential oils, read a book, or practice a meditation routine before bedtime. These things will help your body and mind relax.
Eat a Healthy Diet
Eating a healthy and balanced diet with lots of fruits, veggies, and whole-grain will also keep you feeling healthy and strong. Many patients with fibromyalgia often have low levels of vitamin D, so focusing on foods with higher levels of vitamin D can help as well.
Seeing a chiropractor is another way you can help manage your pain and improve range of motion, so you can feel your best and live your best life. A study showed that chiropractic intervention helped manage patients pain levels, improved range of motion in the lumbar and cervical regions of the body and helped with leg raises as well.
By loosening stiff joints and making adjustments to the spine, you can feel much better in no time. Overall, chiropractic care is a good option for Fibromyalgia and a natural and healthy way to give you the best most normal life possible with this condition.
Try Massage Therapy
Another great option to try that is a bit less intimidating than going to the chiropractor is to opt for massage therapy. Massage therapy is great because it is soothing, relaxing, and helps ease any pain you may be experiencing. Many chiropractic offices also offer free massage therapy like in my clinic in Anchorage.
Studies suggest that massage therapy significantly helps pain, anxiety, and depression in fibromyalgia patients. Much of the time patients feel immediate effects making is an effective and fast option for those who feel like they need some relief as fast as possible.
In the end, living with fibromyalgia comes with its challenges and ups and downs. But as with most things in life, this is normal and okay. The good news is there are so many things you can do to help improve your symptoms and live your best life even with the frustrating issues associated with this condition.
Although it may take some time and experimentation, and speaking with your healthcare professional, you are sure to find something that works for you so you can get to feeling your absolute best in no time at all!
About Dr. Brent Wells
Dr. Brent Wells, D.C. is the founder of Better Health Chiropractic & Physical Rehab and has been a chiropractor for over 20 years. His practice has treated thousands of patients from different health problems using various services designed to help give you long-lasting relief.
Dr. Wells is also the author of over 700 online health articles that have been featured on sites such as Dr. Axe and Lifehack. He is a proud member of the American Chiropractic Association and the American Academy of Spine Physicians. And he continues his education to remain active and updated in all studies related to neurology, physical rehab, biomechanics, spine conditions, brain injury trauma, and more.
Forestier’s Disease is a rare form of degenerative arthritis. More commonly known as diffuse idiopathic skeletal hyperostosis (DISH), this disease attacks the ligaments of the body and turns them to bone.
The process is caused by the buildup of calcium salts in the ligaments and tendons, creating abnormal new bone growth (ossification). Doctors are unsure what causes this process to occur, but some suspect there is a genetic component. The hardening of the ligaments leads to joint stiffness and eventual loss of mobility.
DISH can occur in any part of the body, but most commonly affects the spine and lower back. Some people have DISH in their neck ligaments, which can make swallowing difficult. Other areas affected include the shoulders, elbows, ribs, knees, feet and ankles.
When it attacks the ligaments of the feet and ankles, DISH results in heel spurs, small sharp growths of bone that appear along the heel. DISH can be progressive. As it worsens, it can cause serious complications.
Causes of DISH
Sex. Men are more likely to develop DISH than women.
Age. DISH is most common in older adults, especially in people older than 50.
Diabetes and other conditions. People with type 2 diabetes might be more likely to develop DISH than are those who don’t have diabetes. Other conditions that can raise insulin levels in your body may also increase your risk, including hyperinsulinemia, prediabetes and obesity.
Certain medications. Long-term use of medications called retinoids, such as isotretinoin (Amnesteem, Claravis, others), which are used to treat skin conditions such as acne, can increase your risk.
Symptoms of DISH
DISH does not initially produce symptoms. As it progresses, you might experience:
pain and stiffness in your joints, especially in the morning
loss of motion in your feet, lower back and other affected areas
inability to stretch fully
pain in your back, knee or heel
Loss of range of motion
Tingling, numbness, and/or weakness in the legs
Spinal fractures and increased risk of breaking other affected bones
You should always consult a doctor if you’re experiencing pain and stiffness or if you have bone spurs.
Complications
In most cases, DISH causes mild discomfort, allowing patients who have it to live with the symptoms through a combination of pain relievers, stretching exercises, other interventions and in rare cases, surgery to remove bone growth.
For others, the disease may continue to progress which can result in a complete loss of mobility in the affected joints. For instance, if you have DISH in your shoulder, it can make it difficult to raise your arm or move it in all its natural positions.
Fractures are a serious complication of DISH because the stiffness of your tendons makes your bones more likely to fracture if you’re injured.
One huge drawback with DISH is that the pain and stiffness can mimic many other conditions, so proper diagnosis and treatment is essential.
Diagnosis and Treatment
An xray shows the skeletal changes of a DISH patient in the Thoracic Spine.
A diagnosis of diffuse idiopathic skeletal hyperostosis (DISH) is often suspected by the signs and symptoms a person has. X-rays can confirm the diagnosis. In some cases, a computed tomography (CT scan) and/or magnetic resonance imaging (MRI) may also be ordered to rule out other diseases that cause the same symptoms. All three types of imaging studies may be used to see which other areas of the skeleton are affected by DISH.
There is no cure for DISH, but you can
Treat underlying conditions. If you have diabetes or another condition associated with insulin resistance, getting that condition under control will help minimize the symptoms of DISH. Maintaining a healthy weight will also help.
Get pain relief. Ask a podiatrist for pain relievers that can treat joint stiffness in your legs, feet, and ankles. Your doctor might prescribe corticosteroid injections for more severe pain.
Increase mobility. Gentle stretching exercises can keep your ligaments from becoming overly stiff and brittle. Ask your doctor to recommend a regimen for your joints that will keep them moving. Walking, bicycling, and Aqua exercises are all excellent ways to stay mobile.
My Personal Experience
I was diagnosed with DISH in 2014 after going to the Emergency Room for chest pain. After a number of tests were done, including a CT Scan, the doctor informed me that they had discovered I had DISH in my Thoracic Spine (after ruling out heart problems for the chest pain).
I had always had pain and stiffness in my spine but assumed it was “regular” arthritis, as I have Osteoarthritis throughout my body. Finding out it was something different came as a surprise to me. I discovered that because I have Diabetes Type 2, it was likely a contributing factor. In the years since the diagnosis, I have developed bone spurs in my left ankle, and the DISH has spread to include my Lumbar spine as well as the Thoracic spine. The bone spurs on my spine look more like melted candle wax than actual spurs which is typical for this disease.
I find the stiffness is the most difficult part of having DISH. The sensation is like trying to stretch, but never quite getting enough range of motion, so you’re left feeling “incomplete.” It’s almost like one good “pop” would make things better. I do stretching exercises and use a foam roller to help minimize the stiffness, and I’m conscious of my voice as well. I’ve developed some hoarseness over the years which could indicate that the DISH has affected my cervical spine.
I don’t take any additional medication for DISH with the exception of an occasional muscle relaxant if my back is particularly stiff. By relaxing the muscles around the spine, I get some relief from the stiffness that is part of DISH. I find that my stretching exercises are usually effective enough to bring relief. Heat sometimes helps with the stiffness as well, and a good muscle rub or magnesium rub can make a difference in pain levels as well.
Conclusion
If you are experiencing pain and stiffness in the spine or noticing that you are developing bone spurs on your feet (or hands), consult with your doctor and ask about whether DISH could be causing your problems. X-rays and/or other imaging tests can help to determine if there are problems with the ligaments or if there is increased bone growth.
Discovering DISH early can help you get a treatment plan in place to provide relief. Although DISH is considered “rare”, it seems like it’s becoming more predominant than in the past so the sooner you get a diagnosis, the better.
I am terrified of the dentist!!! I have a wonderful care provider who is gentle and kind but having to go see him, even for a cleaning, requires medication for anxiety. I was there recently for a cleaning, the right side one week and the left side the next
Here I am, high on Ativan, with my warm blankie and a bolster under my knees for comfort. You can see my look of trepidation!
And now to work!
Despite my fear, I do this because it’s good for my health. It can be painful in several ways, though. It reminded me how even “normal” things like the dentist aren’t easy when you live with Chronic Pain.
Here are a few tips to make your next visit easier.
General Thoughts
Get comfy!
Ask for a blanket and something for under your knees to help you feel more comfortable in the chair. Most dental offices are happy to provide these items. If there are headsets available, use one, or bring your own music to help keep you distracted.
Use sedation if necessary.
I use Ativan to help relieve my anxiety and it works wonders. It helps me stay relaxed during the visit and then conveniently helps me forget the visit when it’s over. You do need someone to drive you there and back again, but that’s a small price to pay for not being stressed out!
Keep regular appointments
By going for regular appointments, you lessen the amount of work that needs to be done at each cleaning and you catch any other problems sooner rather than later. Follow the schedule set by your dentist.
Maintain your oral health at home
Take care of your oral health at home with regular brushing, using a brush designed for your requirements (soft or medium bristles, spinning or regular, etc.). Use mouthwash to help protect your teeth and if you suffer from dry mouth (often a problem for those who live with Sjogren’s Syndrome), use a product designed to keep your mouth moist.
Floss your teeth with every brushing. It’s important to remove plaque that builds up and flossing is the best way of controlling this.
Limit Starchy and Sugary food and drinks
These items can lead to decay so it’s important that you limit them or use them in moderation to preserve your dental health.
Talk to your dentist about mouth pain
If you are experiencing any type of mouth or jaw pain, talk to your dentist to see if you are developing TMJ (temporomandibular joint). This painful condition can be treated in various ways including medication, a mouth guard or possibly surgery.
Be Aware Of Periodontal Disease
Periodontal disease can have serious effects on your health. If you notice that you have any of the symptoms of gum disease, call your doctor or dentist.
Red, swollen, or tender gums.
Bleeding when brushing or flossing.
Gums that are pulling away from the teeth.
Sores or colored patches in the mouth.
Persistent bad breath or a bad taste in your mouth.
Special Health Considerations*
Diabetes
Diabetes is a disease that affects your body’s ability to process sugar. It can be managed with treatment. Left untreated, it can cause many kinds of problems, including some in your mouth. These include:
Less saliva. This can make your mouth feel very dry.
More cavities. Saliva is needed to protect your teeth from cavities.
Gum disease. Your gums can become inflamed and bleed.
Slow healing. Cold sores or cuts in your mouth may take longer to heal.
Infections. You are more likely to get an infection in your mouth.
If you have poor oral health, you are more likely to get diabetes. Gum disease is an infection. Infections cause blood sugar to rise. If you have gum disease and don’t treat it, your blood sugar could increase. This can raise your risk of developing diabetes.
Cardiovascular problems
Your mouth contains hundreds of different kinds of bacteria. A healthy mouth has the ability to fight off the bad bacteria that cause disease. But when you have gum disease, an infection, or another problem in your mouth, you lose that ability to fight off those germs.
Many studies show an association between gum disease (also called periodontal disease) and cardiovascular disease. The bacteria in your mouth can cause certain types of infection and inflammation. This research suggests that heart disease, clogged arteries, and even stroke could be related to these types.
Another cardiovascular condition linked to oral health is endocarditis. This is an infection in your heart. It is usually caused by bacteria in the bloodstream that attach to weakened areas of the heart. These bacteria could come from your mouth, if your mouth’s normal defenses are down.
Cancer
More than one-third of cancer patients experience problems with their mouth. Cancer and its treatment methods can weaken the body’s immune system. This makes you more likely to get an infection, especially if you have unhealthy gums. They also can cause side effects that affect your mouth. These include:
Mouth sores
Dry mouth
Sensitive gums
Jaw pain
HIV/AIDS
HIV and AIDS also weaken your immune system. That puts you more at risk of infections or other oral problems. It is common for people with HIV/AIDS to develop issues in their mouths, including:
Mouth sores
Dry mouth
Thrush (yeast infection of the mouth)
White lesions on the tongue
Serious gum disease and infection
Mouth ulcers
Osteoporosis
Osteoporosis causes your bones to become weaker and more brittle. This could lead to bone loss in your teeth. You could eventually lose teeth because as they become weak and break. In addition, some medicines that treat osteoporosis can cause problems in the bones of the jaw.
Sexually transmitted infections
A number of different sexually transmitted infections (STIs) can cause symptoms in your mouth. These include:
HPV (human papillomavirus) – Some strains can cause warts in the mouth or throat. Other strains can cause head and neck cancers. These can be hard to detect. They usually develop at the base of the tongue, the tonsils, or the back of the throat.
Herpes – Herpes simplex virus type 1 causes cold sores and other mouth lesions. Type 2 usually causes blisters in the genitals. But both types can be passed between the genitals and mouth. So type 2 could also cause painful blisters in or around the mouth.
Gonorrhea – This bacterial infection can cause soreness and burning in your throat. Sometimes you may see white spots in your mouth, as well.
Syphilis – In its primary (first) stage, you may get sores (chancres) on your lips, tongue, or other places inside your mouth. The sores may go away, even if left untreated. But you will still have the infection and can spread it.
Preterm birth
Severe gum disease has been linked to preterm labor and low birth weight in babies. Research suggests that oral bacteria can affect the placenta and interfere with the growth and development of the baby. It also shows that a severe oral infection could trigger labor too early. This could cause the baby to be born prematurely.
Hip Replacement
It is often advised that anyone who has had a hip replacement undergo a course of antibiotics prior to having dental work done. This is to prevent bacteria from entering the blood stream, which can cause problems such as infection with your hip replacement. Talk to your dentist to see what they advise.
Conclusion
Oral Health Care is important for everyone, but is especially critical if you live with Chronic Illness. See your dentist as recommended and don’t be afraid to call if you notice problems. If you are someone like myself who has a fear of the dentist, ask about solutions such as Ativan, or IV Sedation to make your appointment easier. Don’t let fear put you off from having the mouth and smile of your dreams! Remember…
****Trigger Warning: This post contains depictions of violence against women.
I’m writing about a difficult and personal subject today. Domestic Violence is rampant in North America, and around the world and while I could write a full book on the subject, I want to address it in the context of my own personal story – that of a person who also lived with Chronic Pain.
The Story
I met Dallas on Christmas Day of 1979 when I was 17 and he was 34. I was instantly smitten with him and he was a charmer who got what he wanted when he wanted it. I was delighted his attentions fell on me because I was lonely and on my own – hitchhiking my way around the US and far from any family or friends.
At first, I didn’t realize that Dallas was also a pathological liar. His natural ability to talk to anyone about anything and sound so convincing, plus his good looks had instantly blinded me to anything that could knock him off the pedestal I had placed him on. Oh sure, some things didn’t really “click” with me and he often told the same stories to people that built him up, but I didn’t really think about it.
I learned very quickly that Dallas was also a jealous man and didn’t like other men paying attention to me – especially when they talked to me. We were both traveling the country now, with no set plans in place, and of course he didn’t have a job (a very common scenario as I would soon figure out), but he was good at getting things from people and so we traipsed around, talking about “settling down” and heading to whatever destination would be best for Dallas to come up with a plan. That involved talking to people – or rather, him talking and me trying to make myself invisible.
The first time he hit me was after we had been sitting in a bar on the ground floor of the truck stop we were staying at. He had gone back to our room for something and when he came back, I was chatting to a gentleman next to me, who had literally just asked: “so how are you tonight”? Dallas grabbed me by the arm, dragged me to our room and then started screaming at me about being unfaithful. He backhanded me so hard, I fell across the bed and onto the floor. He yanked me up by my hair and hit me again and I just took it, I was so shocked. It was the first time of many this happened.
But I stayed. I had been living with Chronic Pain for a couple of years at this point in my life and when he wasn’t in a jealous mood, Dallas was so loving and considerate of me. He kept promising to find us a place and get a job and every few months that would happen. We’d settle somewhere, he’d start working and then do something stupid like write some bad checks or shoplift (or outright steal things from people), and we’d have to pack up and leave town, like regular thieves in the night.
Somehow, over time, this pattern became my fault though. If I WASN’T always in pain, we could just travel around the country – that was his theory. He wanted to be a truck driver, but had lost his license so wasn’t able to drive. He resented me for “holding him back from his dreams,” though I’m not sure how he actually reconciled those thoughts. What was apparent was that everything that went wrong was somehow my fault.
One night, while he was in a rage about life not turning out to be fair, he locked me outside of the wee trailer we staying at, in the middle of the night, while I was naked. It was pouring rain, there were no neighbours nearby (we were living out of town) and it was cold. I pounded on the door, but he wouldn’t let me in, and I finally was forced to hide out in the shed on the property, wrapped in a mouldy blanket I found.
The next morning, he acted like nothing had happened. He never apologised, not in words, but sometimes, he would treat me with kid gloves. I never knew from day to day, or even hour to hour, which version of Dallas I was going to get.
I spent 3 years with this man. At one point, he left me for another woman we had met after he completed a 3-month prison stint for a Parole Violation. I returned home to Canada, worked to save up some money and went back to the US to find him. I was that in love and desperate to be with him. So sad when I think about it now. I even ended up pregnant, until a fight with him turned physical and he beat me badly enough that I lost the baby.
We made up, again…I got pregnant for the second time and ended up giving birth to a lovely little boy on Jan. 30th. This time, we were going to do things right! We found a place in Bellingham, Washington to live, and Dallas began working as a house painter. For 6 months, he actually managed to stay at the same job…I truly thought he’d turned a new leaf, with his son being the motivating factor. We still fought viciously, but he only hit me a couple of times, so I thought we could still work things out. Then I became pregnant again when our son was only 6 months old.
This time, it was different. One day, he told me he was going to Seattle for a quote on a huge painting job that could really put us in the money. He left on a Thursday, promising he’d be back on Sunday night.
He never came back.
I sat at the window of the small room we lived in, waiting all Sunday night, not wanting to admit the truth but by end of the day Monday, I had to admit he was really gone. He abandoned his son and child to be, and me, the woman who had stood by him faithfully through all the pain and beatings and lies.
It took a long time for me to recover. I moved back home to Canada, gave birth to my daughter alone and became a single mom to two wonderful kids. I dreamed about Dallas all the time – what could I have done differently to make him happy? How could I have been a better person for him, so he wouldn’t beat me? What did I do that caused him to hate me so much and how could I track him down again?
I didn’t try to find him again. I did see him twice after he left – he contacted me and came to where I was, first when the kids were 1 and 2 and then again when they were 5 and 6. That was the last time I laid eyes on Dallas, and though I grieved for so many things, I had grown some self-esteem by that point and realized how much better I was on my own. I vowed I would never again be abused in any way.
Forms of Abuse
Physical
Physical abuse is probably what we think of first when we hear the word ‘abuse.’ There were always incidents of yelling and screaming at me, hitting me, pulling my hair, punching me in places that the bruises wouldn’t show and little shoves etc, in front of others to keep me under control. I learned quickly not to start conversations with people and to speak only when I was spoken to, so he didn’t get physical with me.
Mental
Mental abuse is almost harder to take than physical abuse. The bruises heal, but the words said cut deeply into the soul and you start to believe the things being said about you. I was repeatedly told I was a burden, stupid and incapable of doing the most basic things. He called me names on a constant basis, told me I was worthless and that I was lucky he let me stay with him.
Financial
Because Dallas often refused to settle down and work a steady job, money was always tight and we often didn’t know where we would eat on any given day. If we were somewhere settled, it was usually better for a bit, but when we were hitchhiking around, we were dependent on Soup Kitchens and Missions and Shelters for a meal. Sometimes I would have to prostitute myself in order for us to have money. I’m not proud of that, but I did what I needed to do in order to survive.
Security
Security abuse is rarely talked about, but it’s when you don’t have the stability of a secure place to be. We slept under overpasses and in the desert, at shelters and missions, at the homes of people Dallas would befriend in our travels…we just never knew where we would be at any given time.
It was especially difficult when I was pregnant the first two times. In addition to my Chronic Pain, I was dealing with morning sickness and cravings, and my body ached in ways it never had before. When you sleep on concrete under an overpass with just a mover’s blanket for covering, it does a number on your body.
So, what are the lessons I learned here?
The Lessons
First off, I learned that nothing I could have done would have changed Dallas. Change has to come from within and you have to want to change in order to make change happen. He didn’t see anything wrong with the way we were living except I was a constant burden to him with my chronic pain. When he wasn’t treating me with kid gloves, he was screaming and berating me.
Secondly, I learned that sometimes, people don’t show you exactly who they are right from the start. It took me a long time to accept that the real Dallas was the one who stole and lied and hit and screamed – not the one who could charm the pants off of you.
Thirdly, I learned that there are various forms of abuse and being beaten isn’t the only way that someone can hurt you. It’s especially hard to accept abuse in your life when you already live with chronic pain or illness of some type.
Fourthly, I learned that there are ways of getting out, but you have to find your own inner strength to do it. You have to stop believing the lies being told about you and realize you are worthy of better treatment. For a long time, I didn’t believe that, and I put up with the abuse because that was all I knew. When Dallas was actually loving me, he loved me so good that I could forget the nightmarish parts of our life.
It wasn’t until the next incident would happen that would put him over the edge before I’d be right back in the middle of the terror and despair and wonder why I was allowing this to happen. My self-esteem was being beaten out of me at every turn and it came to the point that I accepted I really was as stupid and worthless as he made me out to be.
Words of Advice
Does any of this sound familiar to you? You may be a victim of Domestic Violence without even realizing it, especially if your spouse isn’t physically abusing you. Financial abuse (withholding money from you), emotional abuse (berating you and calling you names) and mental abuse (separating you from family and friends, keeping you from working, etc.) are all ways that you can be abused without recognizing it at first.
If you realize that are in an abusive situation, you need a plan to get out. Don’t believe for an instant when the person says they’re going to change. They’re not and they never will. It took me 3 whole years to realize that, 3 years of being beaten and downtrodden. Even after I was finally on my own, it took time to accept that I was the innocent party in all of this.
I had a lot of guilt. You may be experiencing some guilt, as well. If only…if only I’d been a better partner. If only I’d kept my mouth shut. If only the house was cleaner or the kids were better behaved. If only I hadn’t asked for grocery money or needed tampons. The “if onlys” are so hard to deal with, but you need to accept that you are not the one who is at fault. The abuser chooses to abuse…it’s as simple as that. We all have a choice in how we handle situations and most of us choose not to hurt other people.
There are shelters and organizations that can help you if you are in an abusive situation and need to get out. It’s true that most shelters are overcrowded, but you still owe it to yourself to try them. Talk to people who run them to find out what all your options are. Start building a plan to get out, even if it can’t happen immediately. Start by calling the crisis lines in your area or any mental health organization. Here’s a list to help you get started: List of International Domestic Violence Hotlines and Advocacy Organizations
Document everything that’s going on including injuries and outward marks on your body. If you’re able to take pictures that you can safely keep (or send to someone and then delete), do so. If you can safely keep a journal, do so. If you can safely confide in one person…do so. All of this will become helpful if you decide to prosecute your abuser.
Above all, remember that there is always hope. Do what you can to minimize the violence in your situation while looking for ways to get out safely. It may not seem possible now, but don’t give up hope. Confide in someone, and be prepared to make a clean break, without going back to the abuser. You have a beautiful future ahead of you and you deserve every good thing in your life. Remember…
Fibromyalgia can be a lonely disease. Staying connected with friends and family becomes difficult when chronic pain and fatigue make it hard to get out and about like you used to. Sometimes, having a pet can make all the difference in the world!
Not only will a furry friend give you some companionship, but it turns out that pet therapy can actually be a pretty effective way of dealing with fibromyalgia pain. Here’s how it works.
What Is Pet Therapy
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Pet therapy is a guided interaction between a person and a trained animal. It also involves the animal’s handler. The purpose of pet therapy is to help someone recover from or cope with a health problem or mental disorder. Basically, it involves using specially trained animals like cats and dogs to provide comfort to people who suffer from diseases like fibromyalgia, cancer, dementia, etc. The animals provide companionship while the patient pets or plays with them, reducing the amount of stress and pain they feel.
The biggest concern when it comes to pet therapy is making sure that the animals are well-trained and vaccinated. Because pet therapy is often done in hospitals, doctors want to be sure that a dog won’t get loose and run around contaminating the area.
With that being said, pet therapy, when done by a professional, is perfectly safe and can be very effective in treating fibromyalgia pain.
What Are The Benefits Of Pet Therapy?
Pet therapy builds on the pre-existing human-animal bond. Interacting with a friendly pet can help many physical and mental issues. It can help reduce blood pressure and improve overall cardiovascular health. It can also release endorphins that produce a calming effect. This can help alleviate pain, reduce stress, and improve your overall psychological state.
While the idea that simply petting a cat or dog can actually help your fibromyalgia pain seems a little far-fetched, there’s some basic science that backs it up. You see, petting an animal has been shown to cause your body to release lower levels of cortisol, which is the hormone linked to stress. And cortisol levels are directly linked to the amount of pain people with fibromyalgia feel.
And in addition to helping deal with your fibromyalgia pain, pet therapy also has other benefits. Depression and anxiety are both common among people with fibromyalgia, and it turns out that pet therapy can also help significantly with those symptoms. People who engage in pet therapy report consistently lower levels of stress and anxiety than people who don’t. There’s something about stroking a companion animal that lends a level of comfort to people who are suffering.
And taking care of an animal also helps people with fibromyalgia get more involved in daily life. Taking the animal on walks or playing with them in the park are great ways to coax yourself out of bed. And that’s especially true on days when your fibro pain makes you want to just close the curtains and go to sleep. So, a therapy animal can even be a link to the rest of the world when you have fibromyalgia.
So pet therapy can not only help you reduce your fibromyalgia pain, it can help you feel happier and less anxious.
Your doctor or therapist managing your treatment will administer pet therapy. A trained handler, often the pet’s owner, will take the animal to every meeting and work under your doctor or therapist’s direction to help you reach your goals. In most cases, the handlers work as volunteers. Discussion of proper pet handling is needed to ensure the safety of both the person receiving treatment and the pet.
Or if you prefer, you can also purchase your own animal that has been trained to be a therapy animal. There are lots of different breeders and trainers. And one should be able to help you find what you are looking for. A quick google search should be enough to find some in your area.
So maybe you’re the kind of person who hates having to leave their loyal pet behind. Well, getting them certified to provide therapy means that you can get comfort from them anywhere you go. And that can be a great thing when you’re suddenly struck by a fibromyalgia flare-up during your daily routine.
Animals make great companions, and it turns out that they might actually be great for treating fibromyalgia pain too. So if you’re tired of trying side-effect riddled medications, some alternative pet therapy may just be for you.
Outlook
Photo by Dids on Pexels.com
The success of pet therapy depends on establishing realistic goals and expectations and meeting those goals. You and your doctor or therapist will establish these goals at the beginning of your treatment. You’ll also discuss how to reach those goals and how long it will take.
Your doctor or therapist will monitor your progress and help you stay on track to meet your goals. If your progress is slower or faster than expected, they may alter your treatment plan. Remember,
I want to talk about a subject that every person with Chronic Pain is familiar with and probably dreads…
Going to the Emergency Room
There are several reasons why people with Chronic Pain in particular hate going to the ER. Here are some of the top reasons that have been shared with me over the years.
1. Fear of Being Labelled a Drug Seeker
This is perhaps the top reason most people with Chronic Pain list when it comes to the Emergency Room. Even when you live with a sure diagnosis of a medical condition, if you arrive at the ER in pain for whatever reason, you run the risk of being labelled. This is especially true if you already take narcotic pain medications to treat your condition.
You can present with symptoms entirely unrelated to your chronic illness, but doctors still question you about your reason for being there. If you happen to show up with pain for a reason that’s obvious (a broken bone for example), you still have to deal with some measures of disbelief – it’s happened to more than one person I know. In fact, one friend was asked if she had broken her hand deliberately to get drugs. Scary!
If the reason for your pain isn’t immediately obvious, your risk for being labelled increases and you may even find your treatment to be slower than others around you. Doctors seem to believe that since we already live with Chronic Pain, we can certainly manage “a bit more” without issue. This is a long-held misconception that needs to be addressed in hospitals around the world.
2. Fear of Needing More Pain Medication
You wouldn’t initially think that needing pain medication would be an issue, but when you live with Chronic Pain, you’re probably already taking a drugstore’s worth of medication to manage symptoms and side effects.
Adding more pain medication to our bodies may help in many ways, but we tend to run the risk of more side effects than other people, thus adding to our stress. I happen to be sensitive to Morphine – I have problems breathing, and get severe body twitching, nausea and itching. While all those things can be treated with additional medications, why go through all that when Fentanyl works fine?
The problem with this is when I tell doctors I can’t take morphine and the reasons why, it makes me sound like a drug seeker, saying I would like Fentanyl instead. My requirements are legitimate but it can come out sounding very suspicious. Stressful!!
3. Fear of Being Out of Our Comfort Zone
I hate to go to the Emergency Room and will do everything in my power to prevent it, even living with increased pain, because of the stress of being out of my comfort zone – my home. I know I’m going to be subjected to sounds and lights that are difficult for me to manage in the best of circumstances.
I’m going to have to wait for long periods of time to see anyone, my treatment may be delayed if the doctor has concerns about my use of Opioids for pain management (see above), and my pain levels and stress are going to rise the longer I am there. This is in addition to whatever the reason is that brought me to the ER to begin with. I’m already stressed and these added things just make the whole situation more challenging.
4. Fight or Flight Reaction
If I end up with a doctor who doesn’t believe my pain is legitimate, my adrenaline or “fight or flight” reflex becomes engaged. I suddenly find myself having to defend my original illness, along with dealing with the reason I’m there to start with. I don’t want to get into a fight with a doctor if I DO need pain meds – I want them to help me by recognizing my need is real.
For this reason, if treatment is taking a long time, some people choose to “give up” and just go home to live with more pain. This then backfires when you truly can’t handle the pain on your own, and back you go, like a yo-yo. It reduces your credibility as a patient. Unfortunately, when you are treated badly by the ER doctors, it’s hard to sit by and put up with that. Stress increases again, and with that stress comes more pain…which causes more stress.
It’s a circle of misery that could easily be handled if doctors would stop and listen to us right from the start. Too many times, we’re not given the opportunity to speak up and share what’s going on once they find out we have Chronic Pain. You could have a broken arm with bones sticking through, but as soon as doctors hear “Chronic Pain”, they seem to harbour certain assumptions about you.
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5. Wondering if My Pain IS Legitimate
When you live with Chronic Pain for whatever type of condition, there’s a good chance you’re going to have multiple symptoms of your illness. If that illness is flaring up beyond your control and you go to the Emergency Room for help, you may question yourself on whether you really need to be there.
Sure, you live with pain daily, but is this so urgent that your doctor can’t take care of it in the next day or so? Well, it’s a tough call, but I’ve always believed that if you are in enough pain to consider going to the ER, you should probably GO to the ER!!
Now is not the time to second guess yourself. For example, I once experienced chest and jaw pain that was different from anything I’d felt before. I didn’t think I was having a heart attack, but the pain was unbearable and I knew it wasn’t going to respond to heat packs or ice packs.
It turned out I was having a severe and unusual reaction to a new Diabetes drug I had just started and I was hospitalized for 3 days while a bunch of tests were run, and then to let me rest on IV’s and pain medications. In hindsight, nothing bad would have happened to me if I’d stayed home, except I’d have been in excruciating pain for days. I would have gone to see my Family Doctor asap, but I’d also have put myself in misery for days that I didn’t need to be in pain.
By following my instincts, I received top notch care and was treated legitimately like a person who was in pain and needed help.
Ways to Improve Your Emergency Room Visit
There are several things you can do in advance to help improve your visit to an Emergency Room.
1. Make Sure You Have a Regular Family Doctor
Even if your ER visit is for something completely unrelated to your Chronic Pain, having a regular Family Physician shows that you are dealing with your health on a regular basis. This helps to legitimize yourself as someone who cares about their overall health and is doing everything they can to help themselves.
What happens if you don’t have a Family Physician? In some countries, finding a Family Doctor is next to impossible. Attending the same Walk-In Clinic or Urgent Care Centre is the next best thing you can do for yourself, along with getting your prescriptions written by the same location.
2. Try to See Your Family Doctor First
If it’s at all possible, try to see your Family Physician before going to the ER. If you can, take a letter from the doctor with you explaining his findings and recommendations. This can help to speed up service in the ER (though it doesn’t always work).
Depending on the circumstances, this shows you’re using the emergency room as your treatment of last resort, as opposed to the primary place you go for pain medication.
3. Get Your Prescriptions Filled by the Same Pharmacy
One way to ensure legitimacy regarding your medications is to have them all filled at the same pharmacy. This allows doctors to do a quick search to make sure you’re not getting multiple prescriptions filled by multiple doctors.
4. Bring a List Of Your Medications with You
At a minimum, try to bring a list of your medications and dosages with you to the ER. If possible, take the actual bottles with you. This goes a long way to showing the ER doctors that you have legitimate health concerns, and that you know what you’re taking and why.
You might want to consider having a letter from your doctor on hand that outlines your Chronic condition and the treatment plan you are under. If you are going to the ER because of a problem relating to your condition, it can help to speed things up for the doctors if they know what’s been done in the past.
5. Co-operate with The ER Personnel
This may seem like common sense, but when we’re in a panic because of pain and/or injury, we tend to forget our normal sensibilities. Try not to become demanding when you get to the Emergency Room. You’re not the only one there and you have no idea what the other patients are going through.
Your pain or injury may very well be serious, but will be triaged appropriately according to the nurses. YOU might not agree with their assessment but without knowing the big picture, it’s impossible for you to say you’re the most critical person to be seen, even if you feel that way.
Work with the ER personnel, stay calm and cooperative and you’ll generally find yourself being treated respectfully by nurses and doctors who genuinely care about your health and well being.
Conversations with Emergency Room Doctors
For an excellent list of ways to communicate with the ER doctors to ensure you get quality care, this article from Practical Pain Management is a great patient resource. It provides you with things you should and shouldn’t say to make your ER visit most effective.
Speak Up!
I do a lot of Patient Advocacy volunteer work and was speaking at a conference full of doctors. I told them of being mistreated as a drug seeker at one Emergency Room I went to when the pain from my Atypical Trigeminal Neuralgia was overwhelming me. The doctors there assumed because I was in pain, pain medication is what I was looking for.
I wasn’t seeking pain meds (they wouldn’t have worked) but treatment in another form (I had the protocol written down from a specialist), so it was especially frustrating to not be heard.
One of the doctors at the conference spoke up and told me that on behalf of doctors everywhere, he apologized for that kind of treatment and said that it was unacceptable. He said that all ER personnel need to check themselves at the door before bringing in attitudes like that…his belief is that if someone presents at the ER in pain, they are there because they’re in pain. It’s up to the ER docs to determine if it’s physical or mental and how to best treat the patient, no matter what.
I was so touched by his comments…and I told him that the best thing he and everyone else in that room could do was to believe their patient. Yes, there are going to be drug seekers, but the majority of people who show up at the ER don’t want to be there, but have no choice. Believe them, listen to them and help them. It’s really that simple.
Today, I’m featuring a guest post by author Bojana Petkovic, Project Manager at Loud Cloud Health
CBD and Cannabis: How They Benefit Our Health and Society
The good news is that millions of researchers in the field of medicine, pharmacology, and biochemistry put a lot of effort into exploring cannabis and its main cannabinoids. Thanks to research, cannabis and its incredible benefits are quickly gaining momentum. Let’s take a look at some basic facts and stats.
What Makes Cannabis Worth Researching?
Humankind has been familiar with this plant for at least 5,000 years. Throughout history, many people have consumed it as medicine through food and beverages. Some of the most acknowledged effects of cannabis include killing all sorts of pain, helping cancer patients, improving mental health, etc. That is why a growing number of the world’s governments consider decriminalizing or fully legalizing it.
The plant has an incredible number of complex substances in its buds, fan leaves, and stems. Those substances are called cannabinoids. There are ten most significant ones recognized by modern medicine, two of them being CBD (cannabidiol) and THC (tetrahydrocannabinol).
Even though the research has been fruitful, scientists believe there is still a lot more to know about cannabis’s benevolent nature.
What Do We Know About CBD and Cannabis?
First and foremost, we are aware that CBD successfully relieves symptoms such as chronic pain, cramps, and tissue inflammation. Such symptoms are common in diseases like arthritis, fibromyalgia, rheumatism, and numerous other musculoskeletal conditions that typically trouble the senior population. According to the study conducted at McMaster University in Ontario, Canada, CBD tends to reduce arthritic and back pain, leaving trauma-related pain behind as well.
Mental disorders and illnesses are common for all age groups. The typical symptoms include anxiety, mood swings, dementia, and insomnia. Less common ones include severe psychosis.
CBD appears remarkably advantageous in this field of medicine. Research by Bonn-Miller suggests the importance of medicinal cannabis to those who have PTSD by helping them sleep and cope with trauma. Another study from 2006 explains that as much as cannabis might instigate a more regular use, depression and psychotic disorders should be treated with it. Less agitation, more sleep, and success in battling constant anxiety are just some reasons why cannabis should be used in different treatments.
In adults, CBD and cannabis can help cure more severe addictions. Such addictions include heavy opioids, alcohol, and of course, prescription drugs. That may seem paradoxical since cannabis needs to be used in moderation as some forms can cause dependence. Addiction statistics reveal that adequate use of cannabis helped 26% of people who consumed heroin to opt out of it and smoke marijuana instead. Some 40% of alcohol addicts chose to do so as well. Additionally, 66% of prescription drug addicts switched to cannabis for good.
Word of Warning
Though cannabis sounds like a miracle plant, that doesn’t mean it has no side effects. THC is mainly known for being psychoactive, while CBD can induce nausea, dizziness, or dry mouth. Most of these occur if one consumes too much. Cannabis use disorder is a form of dependence, so it is of ultimate importance to use the plant responsibly, and always consult a doctor if you have a condition.
What Can We Anticipate in the Future?
Thanks to technological advancement, we are about to see the new and incredible benefits of this plant. We should not fail to mention that, through further legalization and decriminalization, a large number of people will have job opportunities within cannabusiness. This industry has no intention to leave its upward trajectory. Au contraire, it will most probably be “the next big thing.”
Today, I’m sharing a Guest Post from my friends at Roots of Being. I hope you enjoy!
Meditation
Many adults often meditate for both mental and physical reasons, but what many don’t realize is that meditation can be very beneficial for kids as well. In fact, a study done by UCLA showed that meditation encourages children to overcome their fearsand even works to improve their memory.
If you are interested in learning more about how meditation can be beneficial for kids, you’ll want to keep reading. Below you’ll discover more about this practice and some ways you can inspire kids to try doing it.
What is Mindfulness Meditation?
Mindfulness Meditation is an attention technique that is designed to help you stay calm and relaxed. It is meant to help reduce stress in the body by teaching you how to deal with anxiety strong emotions, which often overwhelm the brain.
This is particularly useful in children, who often have a hard time expressing their emotions verbally.
What Can Meditation Help With?
Meditation can be useful for many things. While it is usually done for relaxation purposes, meditation can also be used to help with:
Learning how to properly communicate with others
Dealing with fear and grief
Insomnia
Depression
Do Kids Need to be a Certain Age to Meditate?
Kids of all ages can meditate, although young children might not fully understand what meditation means until they get older. Certainly kids as young as 4 can learn meditation techniques and benefit from the practice. But it’s usually around the ages of 9-12 years old that children start to understand what meditation is and why it is important.
The Benefits of Meditation for Children
You’ll find that meditation comes with plenty of benefits for children. Below are a few of them.
It Helps to Increase Their Attention Span
Kids are often energetic, and if something doesn’t interest them, they quickly turn their attention to other things. However, this isn’t always possible in the real world. Meditation works to teach children how to focus on things, even those that might not be the most exciting. Due to this, it can increase their attention span in various areas.
It Reduces Stress
Children often don’t know how to handle stressful situations well which can lead to various side effects, such as depression. By meditating, they will work to train their brain to be calm which can significantly reduce stress and tensionin their body. It also helps them to be more aware of their surroundings and teaches them how to deal with situations that might be scary.
It Can Help Them Be More Compassionate and Positive
Numerous studies have shown that meditation can help to teach kids how to be more compassionate. This is because meditation teaches them to have more perspective and emotional control. Because of this, meditation can help them learn to be kind and understanding in numerous situations.
Meditation can also help kids to be more positive as it reduces stress and promotes self-discipline. Meditation will work in the subconscious areas of the mind which often contains thoughts that can lead to depression and negativity. Due to this, it not only keeps kids positive, but happier as well.
It Works to Reduce Obesity
Obesity is a common problem in many kids today. We’re up to the point where approximately one in three kids in the U.S. is overweight. While obesity can be caused by a poor diet or genetics, it can also be due to low self-esteem, stress, and depression.
Meditation works to help reduce the chances of a child becoming obese due to reasons such as these. Mindfulness can help build up a child’s self-worth and can teach them they have an important place in the world.
It can also help those who might be overweight improve their health by encouraging them to be aware of their actions and what they are doing in the present moment. This can work to reduce inattentive eating.
It Helps with ADHD
Attention Deficit Hyperactivity Disorder (ADHD) is a medical condition that many children suffer from which can cause them to make very impulsive decisions and be hyper. While medications can be taken to help with it, they sometimes come with a few side effects, such as headaches and moodiness.
Meditation is a natural solutionfor ADHD as it works to strengthen the brain’s prefrontal cortex – the area that is used for decision making, expressions, and social behavior. It can also release serotonin and dopamine in the body which work to calm the body down while also improving memory, digestion, and temperament.
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Ways to Help Children Meditate
There are a few ways you can teach kids how to meditate. Below are some kid-friendly options to try.
Deep Breathing Techniques
A great way to show kids the power of meditation is to have them try deep breathing. You can teach them to take a deep breath, hold it, and then slowly let the air out. You can compare it to them blowing up a balloon and then letting the air out of it. To help teach them how to slowly let out air, you can have them make soft noises when doing so.
Observation Exercises
An important aspect of meditation is to learn how to stay present in the moment. You can teach kids this vital principle by having them work on their observation skills. To do so, you can have them use their senses to observe what is around them. You can have them touch, smell, or taste things as a way for them to not only learn, but stay grounded.
Have Them Blow Bubbles
While this might strike some as odd, blowing bubbles is a great way to teach kids about meditation and mindfulness. You can have kids blow bubbles while also teaching them how to control their breathing when doing so. Once they blow a bubble, have them carefully watch it float away and allow them to describe what it is doing and what it looks like.
Conclusion
Meditation is incredibly important to introduce to kids as a way to help them naturally deal with problems such as stress, depression, and poor concentration. It not only is easy for them to do, but has been proven to help them be happier and healthier.
For more information on meditation of all sorts, visit RootsofBeing.
Mental Health is a hot topic these days. More and more people are recognizing that they suffering in some way with depression, anxiety, bipolar disorder or other mental health issues.
Today I’d like to share 10 things that can help to improve your mental health. I hope you find these helpful.
1. Recognize There’s A Problem
The very first step to improving your mental health is recognizing there’s a problem. You may be feeling a sense of the blues that you can’t shake, or a generalized anxiety that you can’t control.
Perhaps you’re feeling out of control and going through severe mood swings from mania to depression. All you know for sure is that something is “off” and you need to figure out what it is. Whatever the case may be, recognizing something is wrong is the first step to making things better.
2. Ask For Help
Perhaps one of the hardest things we face in life is asking for help. We like to think we’re capable of handling whatever life throws at us, but it’s not always that simple. You may find that at work, you’re more than capable of tackling whatever you face, but at home it’s a different story. Or, perhaps you’ve faced challenges at home that seem easy, but at work, you’re struggling to find your place.
When you’re dealing with your mental health, you may already feel like you’re a failure. Asking for help could prove to be a very difficult thing to do, but if you don’t ask, you tend to stay stuck in the situation you’re finding hard to manage. Talk to your doctor about what you’re going through, or find a counselor or trusted friend that you can share your concerns with. Sometimes just the very act of sharing with someone can help you feel better without further steps.
3. Accept Help
Once you’ve asked for help, the next step is to actually accept the help that’s offered. This might mean medication for depression or Bipolar Disorder if diagnosed, or your doctor could have other recommendations such as Cognitive Behavior Therapy, Meditation, Yoga for stress, etc.
Accepting help doesn’t mean you will end up with a mental illness diagnosis. However getting a diagnosis simply means that your body may not be producing the right chemicals to help you feel the best you can. There are hundreds of diagnoses, including Depression, Schizophrenia, Narcissism, Bipolar Disorder, and more.
Basically, your mental health can be simple or complex. A doctor or counselor can help to diagnose what’s going on and offer you treatment options. There is no shame in having problems with your mental health. Mental health issues are not your fault and are no different than having a medical condition. With changing times, terminology should no longer hold the stigma it used to. We live in an age where awareness is everything and more and more people are admitting to mental illness in the hopes that we can eliminate the stigmas all together.
4. Get Active
It’s time to get active with your mental health treatment plan. Exercise is a great place to start and many doctors will encourage you to get out and do something physical to help you feel better. Biking, walking, swimming, golf, tennis…whatever you like to do is the best fit. Even 30 minutes a day of exercise can help to balance hormones, improve mood, lessen anxiety and encourage better sleep. Especially if you can do it in the sunshine!
5. Explore Medication
Your doctor may recommend that you start on an anti-depressant or other medication for your symptoms. Please realize that taking medication is not a sign of weakness…it simply means your brain isn’t producing the right chemicals and needs a boost.
I liken it to other diseases…you wouldn’t refuse medication for heart disease or a kidney problem and you wouldn’t have an issue taking something for Diabetes, so why would this be any different? If your brain isn’t creating the right chemical mix, medication is an easy way to correct the problem and bring things back into balance.
Of course ultimately, it’s your choice. Psych meds can have a range of scary side effects and it can sometimes take years to find one that will work right for you. There are also alternatives to medication use. For a list of options, click here.
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6. Cognitive Behavior Therapy
Cognitive Behavior Therapy (CBT) focuses on challenging and changing unhelpful thoughts, beliefs, attitudes and behaviors, improving your emotional response and aiding in the development of personal coping strategies that target solving current problems.
CBT rests on the idea that thoughts and perceptions influence behavior. Feeling distressed, in some cases, may distort one’s perception of reality. CBT aims to identify harmful thoughts, assess whether they are an accurate depiction of reality, and, if they are not, employ strategies to challenge and overcome them.
CBT is appropriate for people of all ages, including children, teens, and adults. Evidence has mounted that CBT can benefit numerous conditions, such as major depressive disorder, anxiety disorders, post-traumatic stress disorder, eating disorders, obsessive-compulsive disorders, and many others. Research also indicates that CBT can be delivered effectively online, in addition to face-to-face therapy sessions.
This link gives you a quick overview of what CBT is and how it works. Ask your doctor for a referral to a certified CBT professional if you think this type of therapy could be helpful for you.
7. Yoga* and Tai Chi
As discussed, exercise is a good way of helping you feel better about yourself. Some people find Yoga and/or Tai Chi to be of great benefit when they are struggling with mental health issues.
The discipline involved with following regulated steps in a slow and deliberate fashion helps to calm the mind and put the focus on your overall well-being. Feeling your muscles working together can be very soothing and the slow movements are safe for just about everyone. Mastering the various forms gives you a sense of success which can be great incentive to keep going.
*Please note: Yoga is not recommended for people with hypermobility. Thank you.
8. Nutrition
Your body needs fuel to function and good nutrition is key to feeling well physically and mentally. By following a healthy eating plan and getting plenty of fresh fruit, vegetables, whole grains and protein, you are aiding your body in running in top condition.
Caffeine may or may not fit into your life – some people find it makes them jittery, others have no problems. Try adding more water to your daily intake – it helps lubricate your brain and joints and keeps you hydrated for optimal function. Avoid sugary beverages as much as possible – they don’t add any value to your health.
9. Spiritual Practices
Being spiritual doesn’t mean being religious, but both can have a place in your life. If you are religious, you may find prayer to be of comfort while you deal with your mental health. If religion is not your thing, spirituality can come from the sense of a Higher Power, Nature, Music or other practices.
Try to engage in your Spirituality/Religion on a daily basis – you may find a time of prayer, being in nature or listening to music to be of value when done at the same time every day. Some people like to do this in the morning, when the day is fresh in front of them. Others prefer to do this at night, so they can reflect on the day.
Whatever time you choose, it’s your time to be honest with your beliefs and to honor them in a way that feels authentic to you.
10. Journaling
Many people who live with mental health issues find journaling to be of value. Being able to honestly reflect on your life without fear of others reading your words can bring great comfort. The key is to write honestly about your feelings, not worrying about recriminations and criticism.
Choose a time to journal when it’s quiet and you won’t be interrupted. Set the stage with a cup of tea or other beverage, find a quiet writing nook and let yourself go. Don’t worry about impressing yourself with perfect grammar – just let yourself go and free flow with the writing. Unless you choose to share your journal with others, this is for your eyes only.
The freedom that comes with writing can bring clarity to your life and help you recognize areas that might need improvement, which then leads to greater understanding and happiness.
A Few Final Thoughts
I hope these 10 steps help you to realize that mental health issues are important and need to be taken seriously. You deserve to feel your best and when you’re not, everything else seems to get bogged down.
By attending to your mental health, you are actually doing your physical body a favor as well, since you’re bound to feel better in all ways when you’re feeling better mentally.
Recognize the problem, ask for help and try some of the steps above and see if things improve. Your doctor is always a great place to start and counseling is almost always worthwhile. You owe it to yourself to be your best version of you. Remember,
Let’s start the New Year with a review of 10 Symptoms you may experience with Fibromyalgia.
Fibromyalgia is a tricky condition to live with as there are many symptoms you can experience beyond Pain and Fatigue. Here are 10 of the top symptoms you may experience and how to manage them.
Symptoms
1. Brain Fog
This is a cognitive impairment that causes problems such as temporary loss of memory, forgetting words or mixing up words, losing your train of thought, or saying things that don’t make sense. It can be frightening when it happens, as these are also signs of other conditions, such as Alzheimers Disease.
Your doctor can do some mental testing to make sure the symptoms you’re experiencing aren’t being caused by some other condition. Ways you can help yourself include keeping a notebook with you to write down important information, taking a moment to pause and collect your thoughts, and keeping a sense of humour about the situation. If you tend to panic about having this happen, laughing is a good way to keep things light while allowing you to start over with what you were saying.
2. Jaw Pain
Jaw pain in the joints on either one or both sides can be mistaken for TMJ (temporomandibular joint disfunction). Pain and swelling are the common symptoms of jaw pain along with stiffness and being unable to open the mouth without pain.
Gentle stretching exercises and muscle relaxants may be helpful in managing the pain. If only one side is affected, try chewing on the other side to relieve pain. If you hear popping or clicking, or if your jaw seems to be “out of joint”, see your dentist to rule out TMJ or other conditions.
3. Urinary Problems
If you are having difficulty with urinating, whether it’s a problem with urgency, leakage or straining, it’s good to check with your doctor to make sure there’s no underlying problem.
Having Fibromyalgia can affect the bladder and kidneys, causing the above symptoms. Some solutions include urinating on a schedule, doing Kegels, seeing a Pelvic Floor Physiotherapist, and using bladder control products for leakage issues.
4. Body Temperature
People with Fibromyalgia may have difficulty in regulating their body temperature. In my case, I can have cold skin and goosebumps, yet be sweating from overheating at the same time. It’s a very disconcerting feeling.
Things that may help include keeping a light blanket or sweater nearby for chills and a fan for when heat becomes a problem. I have found that keeping my feet warm helps with the chills and then using a fan helps ward off the sweating.
5. Weight Gain
Weight gain is often caused because of medications you may be taking for your Fibromyalgia. Even if you’re not taking prescriptions, you may find you’re still gaining weight – it’s one of the anomalies of having Fibro. The only way to lose weight is by taking in less calories than you are expending. Fad diets may work for a short period of time, but in general are unsustainable.
Following a proper eating plan from all 4 food groups is essential and exercise is as well. You may find walking helpful (consider using walking poles for extra stability) or water activities, such as Aquafit, Deep Water Workouts, or Pool Walking to be helpful.
6. Chest Pain
Chest pain can be a scary symptom of Fibromyalgia and should always be checked out by a medical professional if you experience the following:
Pressure, tightness, pain, or a squeezing or aching sensation in your chest or arms that may spread to your neck, jaw or back.
Nausea, indigestion, heartburn or abdominal pain.
Shortness of breath.
Cold sweat.
Fatigue.
Lightheadedness or sudden dizziness.
The cause of chest pain in Fibromyalgia is often because of something called Costochondritis, which is an inflammation of the cartilage around the ribs. The condition usually affects the cartilage where the upper ribs attach to the breastbone, or sternum, an area known as the costosternal joint or costosternal junction.
Treatment includes anti-inflammatory pain relievers such as Ibuprofen or Naproxen and using either heat or ice (which ever feels best for you).
7. Sleep Disorders
Pain can keep you from getting the sleep you need. You may also be experiencing Restless Leg Syndrome and not even be aware of it. Sleep Apnea is another problem that you may be facing and all of these issues can prevent you from getting the deep REM sleep that is necessary to repair the body.
Good sleep hygiene is important to follow. You may want to keep a notebook to jot down your thoughts when you wake at night to see if there is a pattern. Keep the room cool, avoid using electronics for one hour before bed, and try using a weighted blanket to see if that helps.
8. Digestive Problems
When you have Fibromyalgia, you may experience digestive disorders including nausea, vomiting, diarrhea or constipation (or occasionally both), heartburn and a general sense of feeling “unwell”.
Drinking peppermint tea can help with nausea, eating smaller more frequent meals might make a difference and trying to set up a schedule for bowel movements can help relieve discomfort. Metamucil or other Fibre supplements every day can be helpful for the bowels without resorting to laxatives.
If symptoms persist, see your doctor to rule out other potential problems.
9. Skin Problems
Itching, rashes, hives and tiny red marks can often show up when you have Fibromyalgia. Skin may become more sensitive to soaps and fragrances and you may discover that your normally dry skin has become oily or vice versa.
Use of a mild cleanser for face and body is imperative, especially ones containing oatmeal. Antihistimines are suggested when hives and itching become a problem and the tiny red marks that might show up on your skin are harmless.
If you have problems with skin rash, see your doctor who may recommend a dermatologist for further treatment.
10. Depression
Depression and Fibromyalgia may go hand in hand without you realizing you are showing signs. If you are finding yourself struggling to maintain interest in former activities, you’re isolating yourself, eating less or more than usual or have been unable to shake “the blues”, you may be experiencing Depression.
Treatment includes Cognitive Behavior Therapy (CBT) and often, medications. There is no shame to having Depression – you haven’t done anything wrong. You’re not weak, your body is showing signs of a chemical imbalance which should be treated like any other medical problem.
If you are feeling so depressed that you are suicidal, please call a hotline for help. You can find more information on hotlines here for Canada and here for the United States. In the UK, you can use this page for help.
Conclusion
There are over 60 different symptoms that relate to Fibromyalgia. These 10 are just the tip of the iceberg, but are the ones more commonly experienced.
If you are experiencing something new, or if a symptom you’ve had for awhile changes, it’s always important to see your doctor, to rule out anything outside of Fibromyalgia. Better safe than sorry is certainly the key here. And remember…
When I wrote my post An Attitude of Gratitude, I received a lot of good comments on it, both those left with the post and in other formats. I meant every word of that post and I wanted to expand on that today, and THANK my body for all it does, despite Fibromyalgia (and several other health conditions). Here are some of the reasons I have to thank my body (and my mind!)
I Have A Strong And Compassionate Heart
Physically, my heart is in tip-top shape. After experiencing some chest pain a few years ago, I was put through a battery of tests including a heart scan and an ultrasound. Everything came back showing my heart to be in excellent shape and my risk of heart attack to be at approximately 1% based on all factors in my life. Now that’s pretty amazing when you consider all the health conditions I live with, but I trust the tests and the monitoring.
What I tend to be most concerned with when it comes to my heart is how compassionate am I? Do I care about others? Do I show it? Do I reach out when others need a hand or a shoulder to lean on? Those are the heart conditions that I worry about and I work hard to make sure I’m staying heart-healthy in this area too.
I’ve Been Blessed With Common Sense
Not many people know that I never graduated High School. I only finished with a Grade 11 education, and while I’ve taken College courses to complete a Certified Event Planning Certificate, I’ve never furthered my formal education. I was able to get a good job in a field I loved by working hard and having common sense, which I believe is something sorely lacking in many people these days.
I don’t know if common sense is something you’re born with or something you learn. I only know that it comes naturally to me. It’s intuitive, it’s part of me and I don’t struggle with it…it’s just who I am. I may not be the most well-educated person in the group, but at least I have this gift. I’m always thinking and strategizing about scenarios and how I would handle them. I rarely panic anymore about things…I just seem to know how to get on with it. I’m eternally grateful for this ability and I don’t take it for granted.
I’m Able To Give Back To Others
Volunteering is hugely important to me. Having the ability to give back to others makes me feel good and that’s why I sit on committees and working groups, so I can make the improvements that enhance the lives of others. My involvement with Patient Voices Network was a game-changer from the first time I attended the orientation session. PVN is an organization in British Columbia that allows ordinary citizens to have a say in how health care is delivered in our province.
Through my involvement with PVN, I’ve been able to attend conferences and education sessions, sit on committees (4 of them at the moment!) and take part in surveys, including being part of a group that is actually creating a Provincial survey for release in the next year. I’ve traveled for my volunteer work, met incredible accomplished people at all levels of business and government and work alongside other Patient Partners who, like me, are out there making change happen.
I Can Spend Time with Loved Ones
Being able to spend time with my husband and kids and friends is critical to my overall wellbeing. Ray and I have a motorcycle and we love to go for rides around Vancouver Island and the Gulf Islands. When I travel with my volunteer work, I’m often able to meet with our daughter Ashley for lunch or dinner in Vancouver where she works, and this is a huge treat. Our son Troy is in Calgary and I am able to see him when I travel there to stay with a dear girlfriend Charlotte twice a year. These are great blessings to me!
I don’t have a lot of friends who live near me, but I treasure the ones I can get together with all the more, especially Lorna. My online friends play an important part in my life as well –I’d be lost without them. I belong to a few online groups who fulfill a need in me that only they could meet. My body and mind function better because of all these interactions and I tend to forget that sometimes, especially when I’m having a high pain day. I can get very reclusive, but it’s good to know that loved ones are there when I need them, just as I am there for them.
I’m Still Able To Read And Listen To Music
I consider myself lucky that none of my health conditions have taken away the deep pleasure I get from reading and from music. I love reading the life stories of others in the form of biographies and autobiographies. Great fiction warms my heart. True Crime stirs my compassion for others. Reading a good book of any genre is a total act of joy for me and to lose that ability would be heartbreaking, even with all the other options available.
The same goes for music. I don’t listen to music every day, or even that often, but when I’m in the mood for it, it completely fills my soul. My tastes are eclectic, running from Acapella to Zydeco and I’m grateful there are so many ways to be exposed to music in this digital age. The internet has been a wonderful source of entertainment in my life and I’m thankful my body allows me to enjoy the endless variety it brings.
I’m Grateful To Be Able To Blog
No matter what my body throws at me physically, I’m still able to write and for that, I have no words. Writing is very personal for me, as it’s all based on my life and what I’m going through. My thoughts and hopes and disappointments are all shared in equal value and it’s a unique feeling to expose myself like that. I don’t mind the scrutiny at all, because I do this of my own free will, but there are times I wonder if I should censor myself more or be even more open.
No matter how bad things get for me physically, I cling to the knowledge that it can get better. Yes, it might get worse, and often does, but even in the worst of my pain, when I’m writhing in bed in agony, there’s a part of me that refuses to give up or give in. That tiny stubborn piece of me that says “hold on, pain ends.” HOPE.
It’s an honour to know that you, dear reader, are taking in my words and finding something useful. That’s something I’m grateful to my body for, too. No matter how bad things may get physically, you can’t take that away from me.
Revised from last year, I thought it was a good time to share my favourite Christmas quotes!
In the Spirit of the Season, here are 50 Christmas quotes to help bring good cheer to your heart during the holidays. Thanks to the website Daring To Live Fully for the list.
1. “I sometimes think we expect too much of Christmas Day. We try to crowd into it the long arrears of kindliness and humanity of the whole year. As for me, I like to take my Christmas a little at a time, all through the year. And thus I drift along into the holidays – let them overtake me unexpectedly – waking up some fine morning and suddenly saying to myself: ‘Why, this is Christmas Day!’”
~ David Grayson
2. “It’s beginning to look a lot like Christmas; Soon the bells will start, And the thing that will make them ring Is the carol that you sing Right within your heart.”
~ Meredith Willson, “It’s Beginning To Look A Lot Like Christmas”
3. “Christmas gift suggestions: to your enemy, forgiveness. To an opponent, tolerance. To a friend, your heart. To a customer, service. To all, charity. To every child, a good example. To yourself, respect.”
~ Oren Arnold
4.
5. “Gifts of time and love are surely the basic ingredients of a truly merry Christmas.”
~ Peg Bracken
6. “Instead of being a time of unusual behavior, Christmas is perhaps the only time in the year when people can obey their natural impulses and express their true sentiments without feeling self-conscious and, perhaps, foolish. Christmas, in short, is about the only chance a man has to be himself.”
~ Francis C. Farley
7. “It is Christmas in the heart that puts Christmas in the air.”
~ W.T. Ellis
8. “Christmas waves a magic wand over this world, and behold, everything is softer and more beautiful.”
~ Norman Vincent Peale
9. “Christmas now surrounds us, Happiness is everywhere Our hands are busy with many tasks As carols fill the air.”
~ Shirley Sallay
10. “Each sight, each sound of Christmas And fragrances sublime Make hearts and faces happy This glorious Christmastime.”
~ Carice Williams
11. “Blessed is the season which engages the whole world in a conspiracy of love!”
~ Hamilton Wright Mabie
12. “Christmas is not as much about opening our presents as opening our hearts.”
~ Janice Maeditere
13. “Love is what’s in the room with you at Christmas if you stop opening presents and listen.”
~ Author unknown, attributed to a 7-year-old named Bobby
14. “I wish we could put up some of the Christmas spirit in jars and open a jar of it every month.”
~ Harlan Miller
15. “Christmas is the season of joy, of holiday greetings exchanged, of gift-giving, and of families united.”
~ Norman Vincent Peale
16. “Christmas is most truly Christmas when we celebrate it by giving the light of love to those who need it most.”
~ Ruth Carter Stapleton
17. “Good news from heaven the angels bring, Glad tidings to the earth they sing: To us this day a child is given, To crown us with the joy of heaven.”
~ Martin Luther
18. “The best of all gifts around any Christmas tree: the presence of a happy family all wrapped up in each other.”
~ Burton Hillis
19. “Probably the reason we all go so haywire at Christmas time with the endless unrestrained and often silly buying of gifts is that we don’t quite know how to put our love into words.”
~ Harlan Miller
20. “For centuries men have kept an appointment with Christmas. Christmas means fellowship, feasting, giving and receiving, a time of good cheer, home.”
~ W. J. Tucker
21. “Christmas is not just a time for festivity and merry making. It is more than that. It is a time for the contemplation of eternal things. The Christmas spirit is a spirit of giving and forgiving.”
~ J. C. Penney
22. “I heard the bells on Christmas Day Their old, familiar carols play, And wild and sweet The words repeat Of peace on earth, good-will to men!”
~ Henry Wadsworth Longfellow
23. “I love the Christmas-tide, and yet, I notice this, each year I live; I always like the gifts I get, But how I love the gifts I give!”
~ Carolyn Wells
24. “Mankind is a great, an immense family. This is proved by what we feel in our hearts at Christmas.”
~ Pope John XXIII
25. “Let us have music for Christmas… Sound the trumpet of joy and rebirth; Let each of us try, with a song in our hearts, To bring peace to men on earth.”
~ Mildred L. Jarrell
26. “Christmas is not a time or a season but a state of mind. To cherish peace and good will, to be plenteous in mercy, is to have the real spirit of Christmas.”
~ Calvin Coolidge
27. “I don’t think Christmas is necessarily about things. It’s about being good to one another, it’s about the Christian ethic, it’s about kindness.”
~ Carrie Fisher
28. “What is Christmas? It is tenderness for the past, courage for the present, hope for the future. It is a fervent wish that every cup may overflow with blessings rich and eternal, and that every path may lead to peace.”
~ Agnes M. Pharo
29. “May Christmas lend a special charm To all you chance to do. And may the season light your way To hopes and dreams anew.”
~ Garnett Ann Schultz, “My Christmas Wish”
30. “I’m dreaming of a white Christmas, Just like the ones I used to know, Where the tree tops glisten And children listen To hear sleigh bells in the snow.”
~ Irving Berlin
31. “I will honor Christmas in my heart, and try to keep it all the year.”
~ Charles Dickens, Ebeneezer Scrooge, A Christmas Carol
32. “And the Grinch, with his Grinch-feet ice cold in the snow, stood puzzling and puzzling, how could it be so? It came without ribbons. It came without tags. It came without packages, boxes or bags. And he puzzled and puzzled ’till his puzzler was sore. Then the Grinch thought of something he hadn’t before. What if Christmas, he thought, doesn’t come from a store. What if Christmas, perhaps, means a little bit more.”
~ Dr Seuss
33. “The merry family gatherings– The old, the very young; The strangely lovely way they Harmonize in carols sung.
For Christmas is tradition time– Traditions that recall The precious memories down the years, The sameness of them all.”
~ Helen Lowrie Marshall
34. “Christmas is forever, not for just one day, for loving, sharing, giving, are not to put away like bells and lights and tinsel, in some box upon a shelf. The good you do for others is good you do yourself.”
~ Norman Wesley Brooks, “Let Every Day Be Christmas”
35. “This time of year means being kind to everyone we meet, To share a smile with strangers we may pass along the street.”
~ Betty Black
36. “Until one feels the spirit of Christmas, there is no Christmas. All else is outward display–so much tinsel and decorations. For it isn’t the holly, it isn’t the snow. It isn’t the tree not the firelight’s glow. It’s the warmth that comes to the hearts of men when the Christmas spirit returns again.”
~ Unknown
37. “There is a Christmas song upon the air, There is a joy innate within the heart; An inner sense of peace, a holy light Illumines life and sets these days apart.”
~ Edna Greene Hines
38. “I am not alone at all, I thought. I was never alone at all. And that, of course, is the message of Christmas. We are never alone. Not when the night is darkest, the wind coldest, the world seemingly most indifferent. For this is still the time God chooses.”
~ Taylor Caldwell
39. “Christmas in Bethlehem. The ancient dream: a cold, clear night made brilliant by a glorious star, the smell of incense, shepherds and wise men falling to their knees in adoration of the sweet baby, the incarnation of perfect love.”
~ Lucinda Franks
40. “Are you willing to believe that love is the strongest thing in the world – stronger than hate, stronger than evil, stronger than death – and that the blessed life which began in Bethlehem nineteen hundred years ago is the image and brightness of the Eternal Love? Then you can keep Christmas.”
~ Henry Van Dyke
41. “Ask your children two questions this Christmas. First: What do you want to give to others for Christmas? Second: What do you want for Christmas? The first fosters generosity of heart and an outward focus. The second can breed selfishness if not tempered by the first.”
~ Author Unknown
42. “Bless us Lord, this Christmas, with quietness of mind; Teach us to be patient and always to be kind.”
~ Helen Steiner Rice
43. “Christmas! The very word brings joy to our hearts. No matter how we may dread the rush, the long Christmas lists for gifts and cards to be bought and given–when Christmas Day comes there is still the same warm feeling we had as children, the same warmth that enfolds our hearts and our homes.”
~ Joan Winmill Brown
44. “Christmas – that magic blanket that wraps itself about us, that something so intangible that it is like a fragrance. It may weave a spell of nostalgia. Christmas may be a day of feasting, or of prayer, but always it will be a day of remembrance – a day in which we think of everything we have ever loved.”
~ Augusta E. Rundel
45. “Christmas day is a day of joy and charity. May God make you very rich in both.”
~ Phillips Brooks
46.
47. “Christmas is doing a little something extra for someone.”
~ Charles Schulz
48. “Christmas, my child, is love in action.”
~ Dale Evans
49. “Off to one side sits a group of shepherds. They sit silently on the floor, perhaps perplexed, perhaps in awe, no doubt in amazement. Their night watch had been interrupted by an explosion of light from heaven and a symphony of angels. God goes to those who have time to hear him–and so on this cloudless night he went to simple shepherds.”
~ Max Lucado
50. “Want to keep Christ in Christmas? Feed the hungry, clothe the naked, forgive the guilty, welcome the unwanted, care for the ill, love your enemies, and do unto others as you would have done unto you.”
As we enter the Season of Miracles, I wanted to write today about something that’s been on my heart. Joy and Miracles and hope for the future.
There is so much hope that comes with Christmas and Hanukkah – the Birth of the Christ Child, the Miracle of the Oil burning for 8 days – and I want us to see that despite Chronic Illness, there can still be joy and miracles and things to look forward to.
After living with Chronic Illness for over 30 years, my list of physical ailments is long and continues to grow. I also have a mental illness to deal with which will be with me for the rest of my life.
Having Bipolar Disorder was a frightening diagnosis for me, but after finally getting it under control with the proper medications, it’s become a real non-factor in my life and I often forget that I have it.
To me, that’s a miracle.
Each year though, my physical pain gets worse, and so does my Chronic Fatigue. I struggle more with pain management and all the side effects, but I’ve also learned new tips and tricks to help deal with my days – another reason to feel hopeful.
Making Changes
In a previous post, I wrote about complementary medicine and how it can help with Chronic Pain. I am a true believer in trying new solutions for old problems and had some great feedback about this article. I hope you were able to incorporate some of these ideas, or will look at the post to give them a try.
Living with Chronic Pain can be a bittersweet encounter – bitter because of the pain and side effects and all the negative changes in your life, but sweet because there are still things to be grateful for.
Research
There is new research on the horizon for diagnosing Fibromyalgia – the work being done to develop accurate blood testing has never been more exciting, and with science on our side, things are bound to have a positive impact in our lives.
The sooner we get a true diagnosis, the sooner treatment can start.
Treatments themselves are becoming better too, now that we understand that Fibromyalgia isn’t an autoimmune disorder and that its roots lie in the nervous system and the inability to communicate properly with the brain and spinal canal regarding pain signals.
Although there haven’t been any new medications released to treat Fibro, Gabapentin is being used more commonly in conjunction with the approved medications (Savella, Cymbalta and Lyrica) with good results.
More and more patients are becoming involved in Research for their health conditions, and Clinical Trials are being held across North America on a regular basis.
For more information about clinical trials, you can sign up here at ClinicalTrials.gov to see if you qualify for studies on a variety of health issues, not just Fibromyalgia. Another good spot to try is Patients At Heart. For Canadians, this link takes you to the Health Canada Clinical Trials website.
Advocacy
Another area where I’m seeing hope and miracles is in Patient Advocacy. This is a fast growing area where Patients become involved as authorities in their lived experience and work together with Health Care Partners to make changes in how health care is delivered.
One of the largest national organizations in Advocacy is WEGO Health. WEGO Health works with Patients in a wide variety of areas, offering opportunties to share you stories and help to impact change in a number of different ways.
They highlight a number of different annual conferences that take place in North America, and provide opportunities for you to share your story and get involved in various projects.
Patient Advocacy at an organizational level is becoming extremely important as well. If you want to be involved, simply contact the health organization of your choice, and ask them how you can become a Patient Advocate.
Volunteering your time to share your health story and help others is a great way to give back, beyond simply “making a donation”. Financial help is always needed and appreciated, but you can make a real difference as well in sharing your experiences.
Volunteering
Speaking of volunteering, this is an activity that has given me the greatest joy since becoming disabled. I do volunteer work for a group in BC, Canada called the Patient Voices Network, where I act as a Patient Advocate for a variety of Health Care initiatives.
I currently sit on 5 health-related committees,. Two are with the BC Emergency Medicine Network. Another is a Surgical Quality Improvement committee and another committee is devoted to ensuring Quality Control for all the Laboratories on Vancouver Island, BC.
Finally, I am a member of the Oversight & Advisory Committee for the Patient Voices Network, a role I’ve held for 3 years now. We oversee the activities of PVN and ensure that Patients are getting opportunities to share their voices in making change in health care.
I have also recently been working on becoming a Coach for PainBC.ca, allowing me to work directly with people with Chronic Pain and helping them find solutions for situations in their lives that they require some guidance with. I expect that work to start in 2020 when my training is complete in mid-December.
These volunteer opportunities allow me to give back to the community in a variety of ways while still taking care of my health. I devote approximately 20 hours a month to all of these committees which is manageable without overdoing it.
I love the variety of experiences I get to be involved in, the people I work with (surgeons, Government officials, other patients, etc.) and the opportunity to stretch my wings and try new things beyond my day to day life.
I’ve even been sponsored to travel to various conferences and to take courses such as the San’yas Indigenous Cultural Training.
I share this with you to show you that even if your health isn’t the greatest, you can still participate in volunteering in ways that make a difference.
Another volunteer suggestion is this: if you are a crafter, find out if your local hospital has need for knitted or crocheted items and take on the challenge. Blankets, baby items and more are often for sale in the Hospital Gift Shops and you can have a real impact on someone’s life with this kind of giving.
I know I’ve been very comforted in times in the hospital when I’ve been provided with a beautifully created blanket!
Season of Hope
I trust you are getting a sense of the hope and miracles I started this post with. There is so much potential in our lives even if we are disabled by pain and our physical and/or mental illnesses.
We must let go of the old ways of thinking that our good days are behind us, and start celebrating the wonderful things we have yet to accomplish.
Think about what you’re good at and find a way to incorporate it back into your life. What makes you smile? What makes your heart skip a beat? Find a way to bring that joy back into your life and see what changes.
Pain is easier to manage when you have good things to look forward to. Fatigue seems easier to handle when you’re active and busy, both mentally and physically.
I hope this post was helpful. I appreciate your comments below and look foward to sharing a magical Season with all of you! Remember…
Every year, I like to share a few Holiday recipes that are standards in my house. I hope you enjoy! Feel free to share your own recipes in the comment section if you’d like!!
Melt In Your Mouth Shortbread Cookies
INGREDIENTS
2 cups butter, very soft (I use salted, but unsalted works, too)
1 cup powdered sugar
1 teaspoon vanilla
1/2 cup cornstarch
3 cups all-purpose flour
Colored candied cherries or dried cranberries, for garnish
INSTRUCTIONS
Preheat your oven to 350 degrees. Lighty grease three baking sheets.
Using a hand-held electric mixer (see notes), cream the butter, sugar, and vanilla until very creamy. Gradually beat in the cornstarch and flour. Continue to beat the batter until it looks like slightly overbeaten whipped cream, about 10 minutes. I always set a timer for 10 minutes as it feels like a long time.
Drop the batter by heaping tablespoons (or 3 level tablespoons, to be exact) onto the prepared cookie sheets. Add a colored cherry or dried cranberry in the center of each cookie. Note: if you don’t have 3 cookie sheets wait until you remove the baked cookies from one and it cools completely. Putting the cookie sheets outside in the cold winter weather cools them down very quickly.
Bake the cookies for approximately 15 minutes. You can bake two sheets at once, turning them halfway through. Remove the cookies from the oven just as they start to brown on the bottoms.
Let the shortbread cookies cool on the cookie sheet for at least 10 minutes, then transfer them to a cooling rack to finish cooling. Do be careful when moving them as they will fall apart if you transfer them too soon.
NOTES
I have always used a hand-held electric beater to make these. Based on feedback from both a reader and my sister, if you use a stand-mixer the cookies will fall flat. If you want to use your stand mixer, please make sure to reduce the time you mix the batter.
A longtime family favorite for the holidays, this easy sausage and herb stuffing uses store-bought stuffing cubes, eliminating the step of slicing and drying out the bread. Servings: 8-10
1-1/2 cups diced yellow onion (from 1 large or 2 small onions)
1 cup diced celery (from 3 large celery stalks)
4 garlic cloves, finely chopped
1 pound bulk sweet Italian sausage (i.e., sausage with the casings removed) — see note below
2-3/4 cups low sodium chicken broth
1 large egg, beaten
1 tablespoon fresh chopped rosemary
1 tablespoon fresh chopped sage
1/4 cup fresh chopped parsley
1/2 teaspoon salt
1/2 teaspoon freshly ground black pepper
INSTRUCTIONS
Preheat the oven to 350°F. Grease a 9 x 13-inch baking dish with butter.
Place the stuffing cubes in a large mixing bowl.
In a large sauté pan, melt the butter. Add the onions and celery and cook over medium heat, stirring occasionally, for about 8 minutes, or until the vegetables are soft. Add the garlic and cook 2 minutes more. Add the vegetables to the stuffing cubes. (Don’t wash the pan but scrape out every last bit of vegetables, otherwise they will burn in the next step.)
In the same pan, cook the sausage over medium heat for 8-10 minutes, until browned and cooked through, breaking up the sausage with a metal spatula while cooking (the largest pieces should be no greater than 1/4-inch). Add the browned sausage and fat to the bread cubes and vegetables.
Add the chicken broth, egg, rosemary, sage, parsley, salt and pepper to the bread cube mixture and mix until the bread is soft and moistened. Transfer the stuffing to the prepared baking dish and bake for 65-75 minutes, uncovered, until deeply golden and crisp on top.
Note: If you can’t find bulk sausage, simply buy regular sausage and remove the casings.
Freezer-Friendly Instructions: This dish can be frozen, after baking, tightly covered, for up to 3 months. When you’re ready to serve it, defrost in the refrigerator for 24 hours then reheat it, covered with foil, in a 325°F oven until hot. You can also make the stuffing ahead and refrigerate it until you’re ready to bake, up to two days in advance.
An addictive mix of pretzels, chex cereal, cheerios and nuts, Nuts n’ Bolts is a great snack to feed a crowd.Servings:Cook Time: 15 MinutesTotal Time: 1 Hour 45 Minutes
INGREDIENTS
FOR THE SNACK MIX
4 cups corn chex
3 cups rice chex
3 cups Shreddies
3 cups pretzel sticks
3 cups cheerios
1-1/2 cups salted mixed nuts (or use cashews only)
FOR THE BUTTER SEASONING
10 tablespoons unsalted butter, melted
3 tablespoons Worcestershire sauce
2 heaping teaspoons seasoned salt
1-1/4 teaspoons garlic powder
3/4 teaspoon onion powder
3/4 teaspoon dried thyme
INSTRUCTIONS
Preheat oven to 250 degrees.
Combine all of the snack mix ingredients in a large disposable aluminum pan.
Combine all of the butter seasoning ingredients in a small bowl and whisk until well combined. Pour slowly over snack mix, stirring as you go, to coat evenly. Continue stirring until snack mix is well coated with seasoning. Bake for 1-1/2 hours, stirring every 15 minutes. Let cool, then serve or store in an airtight container.
Note: You can omit any of the snack mix ingredients as long as you substitute something else. The idea is to keep the ratio of snack mix to butter seasoning the same. Also, be sure your oven is fully preheated before you put the snack mix in. The initial surge of heat to preheat the oven will burn the snack mix in a heartbeat.
Freezer-Friendly Instructions: This can be frozen in an airtight container for up to 3 months. Cool completely before freezing.
As December makes it’s appearance, it’s time to start thinking about the coming Holidays. Hannukah, Christmas, Kwanzaa and New Year’s Eve are the major celebrations for this time of year, and when you live with Chronic Illness, it can be hard to get into the spirit.
Plan In Advance
As Hannukah, Christmas, Kwanzaa and New Years get closer, it’s a good idea to start thinking about what you’ll do and where you’ll go. Are there family traditions that can be changed in regards to who cooks or hosts events? If it’s been you in the past that hosted a large group, perhaps someone else could do it this year and you could be the guest. Start to prioritize the things you most want to do (attend a Santa Claus parade, a Festival of Lights, Religious Services, visiting certain friends, etc.) and then build your schedule around that.
Keep Managing Your Chronic Illness
Once you have a schedule in place, you can start building in rest days before and after events. Don’t forget about the day of the events themselves and how you need to ration your energy to have the greatest chance of being able to participate.
Go to your scheduled doctor’s appointments and take care of yourself. It’s so tempting to cancel these things at this time of the year, but don’t. Make sure you are taking your medications as prescribed. If you have special dietary needs, keep them in mind when eating out and preparing meals. Now is not the time to go off a medically necessary diet.
Make Lists
Make lists of things you need or want to do. Prioritize those lists. Delegate and let some things go. Take advantage of online shopping to save your energy. And don’t be a perfectionist. There’s no room for perfectionism in a chronically ill person’s life.
Be flexible with how things might change and decide if you’re still able to attend when changes happen. Don’t stress if you can’t…decide what you can change to make things work.
Pace Yourself
If you know you have a party to go to in the evening, that morning is not the time to scrub out your tub. This is another area in which I struggle. Pace yourself throughout the day and over a period of several days. If you are planning on going shopping with friends on Saturday, plan on Friday and even Thursday being light activity days.
Be Honest
If you’re going somewhere else to celebrate and you have energy limitations, let your host know that you may not be able to participate fully in the activities. If you aren’t able to host at your house like usual, ask others to chip in and host instead. Being honest with people in your life about your limitations can be helpful for avoiding hurt feelings later. Think through what you need to explain to others ahead of time to allow the events to go smoothly.
Enlist The Help Of Your Spouse Or Friend
Enlist the help of your spouse or a good friend to be part of your team during the holiday festivities. This should be someone who knows you well and will be able to read your responses to situations. This person will help you feel safe in the situations you’re entering and will watch for any indication that you aren’t feeling well.
My husband Ray, serves in this role for me. Another friend or family member could also do this. Basically, Ray notices when I’m getting worn down and my health is going downhill. He’s particularly aware of my flagging energy, and will often ask me how I’m doing to gauge whether it’s time to leave. I also know I can tell him I’m ready to go and he’ll take me home immediately if I need to leave.
Don’t feel guilty if you have to leave a situation early. Be thankful instead that you were able to attend, even for just a short while. Gratitude plays a huge part in a successful Holiday season.
Be Okay With Your Plans Changing
This one is a big part of normal life with chronic illness. Flexibility is important because things can change on a moments notice when health issues are a concern. Even if you have everything planned and scheduled, do yourself a favor and release expectations. If you are religious, prayerfully plan your schedule but then hold those plans loosely. Ask God to cover you with perfect peace in whatever situations you may encounter with your health over the holidays.
Ask For Help
Ask for specific things. I don’t like to depend on anyone for help, but if it means making the holidays more manageable, I think it’s worth it. Sometimes, people will offer to help, but they don’t say what they are willing to do. Having a list ready with ideas of what others can do for you will come in handy when people make those kinds of offers.
Do you need help with laundry? Running errands? Housework? How about help with wrapping gifts? Think about all of your regular and holiday tasks and delegate some of them to family members and willing friends.
One thing I ask for when my friends offer to help is that they make me a frozen meal. It helps me to eat healthy but without having to cook during the times I’m either busy or resting. I’ve never had anyone resent the request once they’ve asked what they can do to help me.
Shopping
Shopping can be one of the most stressful parts of the Holidays. Getting out and about can be tiring and painful so make use of the internet to do the majority of your shopping when you can. Most online shops deliver with reasonable pricing and sometimes if you have to ship a long distance, the cost is still worth it to prevent the stress from piling on. Ask for Gift Receipts or Messages so the receiver can return or exchange your gift if necessary.
I keep an Excel spreadsheet with the name of the person I’m shopping for, what was purchased, where and when. It’s easy to refer back to in case there are any questions or problems.
Connect With Others
Try to make time with friends you might not otherwise get to see, even if it’s just for a short while. Have a quick get together at a coffee shop, chat with a girlfriend about a sappy Christmas movie you’ve both watched. Make an effort each day to reach out to someone. Text, Facebook, instant message, make a phone call. You don’t have to carry on an hour-long conversation, just a brief connection can be enough.
Find “Me” Time
Build in some time just for yourself during the holidays to read, craft, rest or do whatever else will help to give you some “me” time. It’s important to recharge your batteries. If being surrounded by people is what energizes you, then do that…it’s all about what makes you feel good.
I tend to enjoy booking a massage once a month during the Fall and Winter months. I find that it helps me physically and mentally – having that to look forward to after a busy time is a relief. I feel better after my body has had the kinks worked out and I’m often more energized as well. Find out if your insurance covers the cost and look for training schools in your area for better pricing.
Make Time For Your Spouse Or Significant Other
It’s so important to carve out time for the two of you. With all the busyness going on around you, communicating can sometimes take a backseat, especially if you aren’t feeling so well. Be honest about how you are feeling and ask for help when you need it. Try to sneak in a few inexpensive “dates.” Drive around and look at the Christmas lights, stop for some hot chocolate, attend a Christmas program together. Just enjoy each others company.
Laugh As Much As You Can
This one is one of my favourite pieces of advice. Laugh. Just do it. I’ve found that no matter how horrible I feel, laughter can be a source of medicine for me. Laughing helps lift my spirit and makes me feel more alive. Try to enjoy yourself while you celebrate the holidays, and be sure to include laughter in your days!
Remember The Reason For The Season
It’s so easy to get caught up in the baking, partying, shopping, decorating, etc., but that’s not really what it’s all about. If you are a religious person, keep attending church services and go to the special holiday programs. Listen to religious Christmas songs along with the pop tunes. If you aren’t particularly religious or are a nonbeliever, meditate, attend holiday community events, and enjoy finding ways to nurture your own spiritual side. Remember,
Fibromyalgia is a complex condition that affects millions of people around the world. There are many questions that people ask when they first find out they have Fibro, and I thought I’d answer some of the more common ones, to help provide some education.
What Are The First Signs Of Fibromyalgia
There are many signs of Fibro but the ones most people experience first is widespread pain and tenderness throughout the body. You may experience pain in only one or two areas, or it may be your entire body. Typically, there are tenderpoints at 18 specific sites on your body, and these are used to help determine if you have Fibro.
Other symptoms of Fibro include:
What Are Tender Points?
Tender points refer to 18 locations on the body that are ultra-sensitive to pain when touched or pressed. Fibro is frequently diagnosed using the Tender Point Test…if you have 11 of the 18 points, you are considered to have Fibro.
Is Fibromyalgia An Autoimmune Disease?
Fibromyalgia is NOT considered an autoimmune disease. Instead, researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.
Fibromyalgia doesn’t qualify as an autoimmune disorder because it doesn’t cause inflammation. Fibromyalgia is difficult to diagnose because its symptoms are similar or associated with other conditions, including some autoimmune disorders.
In many cases, fibromyalgia can occur simultaneously with autoimmune disorders.
How Does A Person Get Fibromyalgia?
Healthprep.com offers this information on how a person gets Fibro.
Emotional or physical trauma can cause the development of fibromyalgia and trigger symptom flare-ups. The mechanism behind this is associated with the affected individual’s hypothalamic-pituitary-adrenal axis. Emotional stressors can cause the physiological stress response to become activated, and lead to the delivery of sensory input information to the brain.
Repeated and excessive stimulation of the functional units of this response in an individual can cause their effector systems to become more sensitive. Greater sensitivity causes alternative or less significant stressors to activate the stress response easily.
The combination of the stress response, emotional reactions, physiological responses, and biological reactions that occur and interact with each other due to physical and emotional trauma can cause the development of fibromyalgia.
Of the population of fibromyalgia patients, around half has existing post-traumatic stress disorder, and two-thirds of these individuals had developed fibromyalgia after the commencement of their PTSD. Some individuals may be at an increased risk of developing fibromyalgia due to the failure of certain psychological buffers to work effectively on emotional stress that is caused by everyday life events.
Physical trauma contributes because it causes emotional stress. These mechanisms related to the patient’s brain may primarily drive the chain of neurophysiological responses known to cause fibromyalgia.
Is Fibromyalgia Real or Fake?
Doctors and patients alike state that fibromyalgia is a very real condition. Pain is often subjective and can be difficult to measure. Because there are no lab tests that can show Fibromyalgia, people assume that it is fake. As a result, the most common misconception about fibromyalgia is that it isn’t a real condition.
In both Canada and the United States, fibromyalgia is now considered a condition that qualifies for Disability. The European Parliament has signed a declaration calling for the recognition of fibromyalgia as a disease which causes disability with a right to claim exemption.
What Are The Best Medications For Fibromyalgia?
NSAIDs (non-steroidal anti-inflammatory drugs) like naproxen (Aleve) and ibuprofen (Motrin, Advil) don’t appear to work for fibromyalgia pain. Opioid narcotics are powerful pain-relieving medications that work for some types of pain, but they don’t always work for fibromyalgia. They can also be harmful—and addictive.
The narcotic-like Tramadol (Ultram) has been shown to have some effectiveness with Fibromyalgia for pain relief. Low-dose amitriptyline can also be helpful. Tizanidine and cyclobenzaprine are muscle relaxants that help treat muscle pain from fibromyalgia.
There are three medications that have been approved for use for fibromyalgia. These medications include Cymbalta (duloxetine), Savella (milnacipran) and Lyrica (pregabalin).
Each of them works in the brain: Cymbalta and Savella belong to a class of medications called serotonin and norepinephrine reuptake inhibitors (SNRIs) whereas Lyrica is a drug that targets nerve signals. It has long been used to relieve nerve pain in patients with shingles and diabetic neuropathy. It is also used to treat partial seizures.
For other treatments, this post offers several suggestions for ways to help with Fibro pain. Another option is to try Cannabis or CBD Oil.
How Life Changing Is Fibromyalgia?
Fibromyalgia can affect you in both mild and severe forms. You may find that with medication, you are able to continue to work and engage in other activities without discomfort. Other people find that even with medications, they are in too much pain to maintain their previous lifestyles.
Disability may need to be sought if you are unable to continue working because of your Fibro. You may need to modifiy activities, use mobility aids or adaptive devices or otherwise change your lifestyle to accomodate your pain and fatigue. Every individual will feel their Fibro differently and you may find that your condition changes constantly as well.
What Helps Fibromyalgia?
Rest, good nutrition, mild exercise and a positive frame of mind all go a long way in helping to live with Fibromyalgia. Lack of movement is one of the biggest mistakes you can make if you have Fibro. It causes your muscles to tighten even more, so exercise such as walking, biking or swimming can be helpful in keeping you flexible and having less pain.
A diet rich in fruits and vegetables, lean protein and good carbohydrates is essential. If you are overweight, you might want to try losing some extra pounds to help with joint pain.
Getting the proper amount of sleep can be very difficult with Fibromyalgia. Follow a sleep plan at night to get your best rest possible and nap if you need to during the day in moderation. A well-rested body is better able to function fully.
Finally, try to maintain a positive perspective. If you find yourself struggling with negative thoughts, it may be helpful to seek counselling or coaching. Support groups either in-person or online can also be very helpful.
Conclusion
Fibromyalgia can be a very difficult condition to diagnose and treat, but as you can see, there are things you can do that make a difference. The more you can educate yourself, the better your outcomes can be. Remember,
Living with Chronic Pain is never easy. You’re desperate for the pain to end, but most doctors are unprepared in helping you live with Chronic Pain. They seem to be limited to treatments like prescription medications and that’s about it.
There are many ways that you can help improve the quality of your life and I’d like to share several of them with you. I have not personally tried every technique listed, but all of them are worth investigating so you can gather as much information as possible on whether they are worth it for you. Let’s get started.
Massage
There are various types of massage available and all of them have the potential of making your Chronic Pain feel better. Styles include:
Each style works the body in a different way and all styles have the ability to help with:
Chiropractic is a discipline that is concerned with the diagnosis and treatment of mechanical disorders of the musculoskeletal system, especially the spine. Chiropractors have proposed, especially those in the field’s early history, that such disorders affect general health via the nervous system
Chiropractic care provides diagnosis and treatment without the use of drugs or surgery for problems related to your muscles, joints, nerves, and spine. Common conditions that are treated include low back pain, neck pain, sciatica, headaches, and sprains. Chiropractic doctors can also provide advice on nutrition and exercise to support recovery and promote prevention.
Ayurveda
Ayurvedic medicine (“Ayurveda” for short) is one of the world’s oldest holistic (“whole-body”) healing systems. It was developed more than 3,000 years ago in India.
It’s based on the belief that health and wellness depend on a delicate balance between the mind, body, and spirit. Its main goal is to promote good health, not fight disease. But treatments may be geared toward specific health problems.
Students of CAM therapy believe that everything in the universe – dead or alive – is connected. If your mind, body, and spirit are in harmony with the universe, you have good health. When something disrupts this balance, you get sick. Among the things that can upset this balance are genetic or birth defects, injuries, climate and seasonal change, age, and your emotions.
Those who practice Ayurveda believe every person is made of five basic elements found in the universe: space, air, fire, water, and earth. These combine in the human body to form three life forces or energies, called doshas. They control how your body works. They are Vata dosha (space and air); Pitta dosha (fire and water); and Kapha dosha (water and earth).
Everyone inherits a unique mix of the three doshas. But one is usually stronger than the others. Each one controls a different body function. It’s believed that your chances of getting sick — and the health issues you develop — are linked to the balance of your doshas.
Ayurvedic Treatment
An Ayurvedic practitioner will create a treatment plan specifically designed for you. He’ll take into account your unique physical and emotional makeup, your primary life force, and the balance between all three of these elements.
The goal of treatment is to cleanse your body of undigested food, which can stay in your body and lead to illness. The cleansing process—called “panchakarma”— is designed to reduce your symptoms and restore harmony and balance.
To achieve this, an Ayurvedic practitioner might rely on blood purification, massage, medical oils, herbs, and enemas or laxatives.
Reiki
Reiki is a Japanese technique for stress reduction and relaxation that also promotes healing. It is administered by “laying on hands” and is based on the idea that an unseen “life force energy” flows through us and is what causes us to be alive. If one’s “life force energy” is low, then we are more likely to get sick or feel stress, and if it is high, we are more capable of being happy and healthy.
A treatment feels like a wonderful glowing radiance that flows through and around you. Reiki treats the whole person including body, emotions, mind and spirit creating many beneficial effects that include relaxation and feelings of peace, security and wellbeing. Many have reported miraculous results.
Reiki is a simple, natural and safe method of spiritual healing and self-improvement that everyone can use. It may be effective in helping Chronic Pain, and generally creates a beneficial effect. It may also work in conjunction with other medical or therapeutic techniques to relieve side effects and promote recovery.
Myofascial Blasting
Healthline.com says that in recent years, the treatment of fascia has exploded in popularity. The idea is that the fascia, or myofascial tissue, contributes to pain and cellulite when it’s tight.
For this reason, fascia manipulation, a technique that aims to loosen the fascia through physical manipulation and pressure, has become a trending topic in the health and wellness realm.
One widely popular method is fascia blasting. This technique uses a tool that’s designed to loosen the fascia, which is supposed to reduce pain and cellulite.
A non-physical method of managing Chronic Pain, Cognitive Behavior Therapy, aka CBT is a structured, time-limited, problem-focused and goal oriented form of psychotherapy. CBT helps people learn to identify, question and change how their thoughts, attitudes and beliefs relate to the emotional and behavioural reactions that cause them difficulty.
It works on Chronic Pain by helping to remove limiting thoughts about your pain, and move you towards a better understanding of what pain is, and how you can manage it. Pain doesn’t always mean something is getting worse…and when we catastrophize pain, we can actually amplify it. By using CBT, you:
identify distortions in your thinking
see thoughts as ideas about what is going on, rather than as facts
stand back from your thinking to consider situations from different viewpoints.
Acupuncture
Therapist performing acupuncture
Acupuncture is a form of traditional Chinese medicine that has been practiced for centuries. It’s based on the theory that energy, called chi (pronounced “chee”), flows through and around your body along pathways called meridians.
Acupuncturists believe that illness occurs when something blocks or unbalances your chi. Acupuncture is a way to unblock or influence chi and help it flow back into balance.
Acupuncture is done by putting very thin needles into your skin at certain points on your body. This is done to influence the energy flow. Sometimes heat, pressure, or mild electrical current is used along with needles
Conclusion
As you can see, there are many alternative forms of treatment that might be worth looking into. Which ones have you tried already? Which ones would you like to try? Leave your comments below. Remember,
Chronic pain and Invisible Illness are difficult conditions to live with and can lead to social withdrawal and loneliness. When you get sick, not only do you have to process and deal with things like surgeries, recovery, medications, new symptoms and flare-ups but socially you may have to give up hobbies and activities you once loved, making it hard to nurture friendships and relationships with those close to you.
It’s hard for those who love you to understand why you might have to cancel plans last minute or leave during the middle of the evening. Because they’ve never experienced what you’re going through, it’s hard to have a frame of reference. Unless you’ve lived it, it’s impossible to make others understand.
Social Isolation Is Serious
Because of these changes that we have to make – like leaving in the middle of an event or cancelling plans – we open ourselves up to feelings of social isolation, depression and anxiety and guilt.
Social isolation is defined as an occurrence when a person lacks opportunities to interact with people while loneliness is the subjective experience of distress over not having enough social relationships or enough contact with people.
It is possible for a person with a chronic illness to be socially isolated and not feel lonely and someone with a chronic illness can feel lonely, while not being socially isolated. There are several issues that people with chronic illness face that can lead to social isolation and feeling lonely:
Disbelief from others when you don’t have a clear diagnosis
Physical limitations due to pain or fatigue
The unpredictability of symptom onset
The trigger of symptoms related to noises, smells, etc.
Lack of a strong support system (Family and/or Friends)
Changes in employment or financial stability
Loss of hobbies and outside activities
Social isolation and feeling lonely are important health problems and should not be overlooked. The chronic illness population is at an even higher risk for social isolation and this problem should be addressed with your Doctor along with other symptoms and risk factors.
What You Can Do About It
When you are socially isolated and have feelings of loneliness, it can actually make your chronic illness worse. The longer you are experiencing isolation or loneliness, the more you start to develop feelings of shame, guilt, inadequacy, distrust and abandonment toward yourself and others. The more these feelings grow, the less likely you are to seek out real human connections.
So what can you do when you start having these feelings?
1. Recognize loneliness for what it is, and accept that you have these feelings. Self-awareness is important in making positive changes. When you catch yourself falling into old habits, you’ll be able to more quickly turn things around.
2. Use Cognitive Behaviour Therapy (CBT) to help reframe your thoughts to become more positive and open to socialization. This can be done with the help of a therapist or through online courses and over time, can be very effective.
3. Resist the temptation to isolate yourself and start forcing yourself to recognize if this is your “go-to response. Deliberately try doing the opposite of what you’re feeling – instead of retreating into watching TV, take a walk or pick up the phone and call someone. The more you resist the temptation to isolate, the easier it becomes
4. Fill your life with loving positive people who are patient and trustworthy and who truly try to understand what you are going through. They will be your encouragers and biggest support system. Remove negative people from your life…you don’t need their energy.
5. Try one new thing each week that will get you to meet new people. Try an art class, go to yoga, volunteer… anything that will get you to meet new people who like doing things that you like to do.
6. Seek out a support group for your illness. This is a great way to meet people who really do understand what you’re going through. Even an online group is fine to get started as being with like-minded people will help to engage you instead of isolating you.
7. Ask for what you need in your life. Don’t feel you’re being a burden on others…when someone asks what they can do for you to help, they genuinely want to help. Let them…give them the opportunity to be of service to you. Perhaps it’s to invite you out for coffee once a week or to go take a class together. You’ll be helping them as much as they will be helping you.
8. Consider therapy. It can help you explore any deeper issues that might be contributing to loneliness or social isolation. Therapy can also be a great accountability and skills training support to help you manage all of the difficult things you are going through in a safe way.
Note: this post contains Affiliate Links which provides me with a small income at no cost to you. Clicking on the links will take you to specific products I suggest. You are under no obligation to purchase, these are simply my recommendations.
When you’ve been living with Chronic Pain for an extended period of time, you know that you’re going to have good days and bad days. What do you do when you start worrying about the bad days – when they’re going to hit, how long they’re going to last and how can you manage to get through them?
I think one of the most important things you can do with Chronic Pain is to acknowledge it. Just because you live with it every day doesn’t mean you’ve come to peace about it. You may try to ignore it, hoping it will go away or you may confront it head-on. It’s important to recognize it for what it is though…pain that disrupts your life and causes your world to spin on a wobbly axis.
Chronic Pain is a force to be reckoned with. You may live most of your time with your pain at a manageable level, but inevitably, there comes a time when a flare-up happens and you find yourself struggling to manage. There are tips and tricks for flare-ups that might help and I’d like to suggest the following:
Relax
Easier said than done, but when your body has launched into “fight or flight” mode, you need to find a way to slow that adreneline down to where you are back in control. This is a good time to try some deep breathing techniques such as the 7-4-7 approach.
Breath in for a count of 7, hold for a count of 4 and breath out for a count of 7. Do this several times until you are able to feel your body starting to relax a bit. By focusing on the breathing, you trick the body into believing the danger is over, so your heart rate returns to normal. You will likely still feel pain, but it should be more manageable.
Heat and/or Cold
Heat and cold are both equally good for dealing with pain. I personally prefer heat as it helps to relax my tense muscles. Cold is better for acute injuries or when inflammation is a problem. Using a heating pad like this one can offer the benefits of a steady source of heat without injuring the skin:
Many people find that Essential Oils offer them benefits to help relieve their Chronic Pain. Certain blends of Essentials can help to control pain, relax you and ease your state of mind. There are many sources of Essential Oils – I like these ones on Amazon.com:
Knowing more about Chronic Pain can help you deal with it better. There are numerous books out there that serve as excellent resources for knowledge. I personally have read these two and found them extremely useful:
Therapeutic Yoga has many benefits, including enhanced sleep and general well-being. This book provides you with the basics of a beginning yoga practice to help you manage your pain.
Support Groups, either in person or online can be so valuable when it comes to dealing with Chronic Pain. Just knowing that others are going through the same thing as you can be empowering. To find a support group in your local area, trying Googling “Pain Support” and your city’s name.
Online, I suggest finding a good Facebook group. There’s one for almost every Invisible Illness (and Visible Illnesses as well) and can be easily found by searching by name in Facebook. One that I recommend is here:
Based in Australia, they have members from around the world, but predominantly Australia, the USA and Canada. I am a member here and the group is extremely outgoing, friendly and they “get it”. Everyone lives with their own medical challenges, so they understand what you’re going through and are super supportive.
For Fibromyalgia, you can check out Fibro Connect, for EDS and POTs, try The Zebra Pit and for all Spoonies, you can visit Connected Spoonies. I belong to all of these groups and find them all wonderful and helpful.
Note: This post contains affiliate links. I will receive a small percentage from the total purchase price at no extra cost to you.
Living with a Chronic Illness such as Fibromyalgia, Multiple Sclerosis, Lupus, Ehlers-Danlos, etc. can be a challenge. So much of your time is taken up with medical appointments, tests, daily pain and discomfort, mobility issues and more.
We sometimes forget to take time to spend on positive, “non-medical” moments. Maybe it’s because we have to look for them, rather than have them always there. Maybe it’s because we’re so tired from being ill that it’s too much effort.
I believe it’s important though, to find those good things in the day or to create moments when necessary. I’d like to share a few ideas with you today to help you fill your time with positives.
Moments
Pets
Our pets bring us so much comfort, whether you live with Chronic Pain or not. If you do live with an Illness of some sort, this is especially true. Pets seem to have a way of knowing when we need an extra cuddle or two, and they’re always there for us. I have a wonderful cat named Dorie, who loves to lay on my legs when I’m on my laptop (like right now)
I can feel my stress dissipating as soon as Dorie lays with me. It’s a tangible and therapeutic benefit of cat ownership and a wonderful feeling period. If you don’t currently own a pet, it’s something to consider.
Books
I love to read and a good book can completely transport me away from a painful day. I get so caught up in the story I’m reading that everything else fades into the background.
My personal preference for books is stories of people who have overcome challenges, especially Chronic Illness of their own. I also love autobiographies and biographies in general, and books on True Crime. Ann Rule is a favourite author in that category.
A couple of suggested books and authors I adore:
Salt In My Soul is a wonderful book about a young woman who lived with Cystic Fibrosis. Mallory’s story is both joyous and sad as she talks about being a young woman with a fatal disease. Her mom takes up the story when Mallory can’t and shares her daughter’s life and dreams.
Let’s Pretend This Never Happened is by one of my favourite author’s, Jenny Lawson. This is a true account of her life growing up with mental illness and is absolutely laugh-out-loud hilarious. I also recommend her second book, Furiously Happy as a follow up!
You can also follow Jenny on her blog site, The Bloggess
Music
Everyone has their own preferences when it comes to music that makes them feel better. I have one friend who loves to rock out to death metal and another who prefers classical music.
I find that listening to the old classics is what works best for me, to distract me from pain and discomfort. I love Led Zeppelin, Pink Floyd, Queen, Electric Light Orchestra and so many more. When I can sing along with the songs, it’s easy to put pain behind me.
Choose a gendre that suits your style, or even your particular feelings for the day. Light and upbeat or dark and moody, the goal is to move beyond pain so your focus is elsewhere. Living with Chronic Illness is never easy, so music can often be a great distraction.
Videos/TV/Movies
Living with Chronic Illness often leaves you with a lot of free time. Some people are more visual than others and find that movies and/or TV are what helps them best. With services such as Cable, Hulu, Netflix and more, there’s an endless variety of content available.
One new thing that’s all the rage is ASMR videos. ASMR stands for Autonomous Sensory Meridian Response, and is a sensation of tingling that you get in the head and spine after viewing/hearing certain sounds or sensations. Hair brushing can bring this on, along with many other stimuli.
This Wikipedia article sums up ASMR nicely and you can find many videos on YouTube to help you experience the sensation. I haven’t personally tried it yet, but if you have, I’d love to hear about it…just leave a note in the comments section.
Another way of relaxing is by sitting outside and soaking up the sounds of nature. Birds, crickets, frogs…all of these can be peaceful and induce a sense of calm in the body.
Hobbies
I am just starting a new hobby of “Paint By Numbers” and have been given this kit by a company called Winnie’s Picks. I will be doing a full review of this product at a later date, when my painting is complete, but I wanted to share with you here what a wonderful kit this is.
Inside the solid mailing tube is everything you need to complete a full size painting. There is a canvas as well as a paper copy of the painting, several different sized brushes and all the paint you can possibly need to complete the work. You do need to frame this yourself when it’s done, but everything else is there. The prices are incredibly low for the quality of product too!
There are many hobbies that you can do when you live with Chronic Illness. You want to be able to work on things that you can pick up and put down when needed, but that still give you a challenge at the same time.
Some of the best hobbies to consider are needlework, knitting, crochet, felting, colouring, painting and working with paper, such as cardmaking. You can also get into more detailed work, such as embroidery, jewelry making, candle making, soapmaking and so much more. Tell me about your hobbies in the comment section. I’m always up for learning new things!
Conclusion
I love watching the hummingbirds that come to our feeder. They bring me such joy as they sip at the nectar I’ve left for them, and I can almost feel my blood pressure going down as I observe them.
Finding ways to live with Chronic Illness doesn’t have to be difficult. We generally have everything we need for distraction in our own homes. Sure, there are days when we just feel too ill to watch a movie or play around with a hobby, but for the most part, we can use the above techniques to distract ourselves.
What sort of things do you do on a daily basis, to manage your Chronic Illness? Share with me in the comments so we can all benefit. Remember,
I want to talk about Pain today. Physical pain is something that most people can say they’ve experienced at some point in their lives and it’s something that feels different for every person. If you live with Chronic Pain, you will experience pain in a completely different way than Acute pain, which is short-lived or fleeting.
Pain Scale
When you are in pain, you are often asked to describe how bad your pain is on a scale of 1 (being the least amount of pain) and 10 (being the worst pain you’ve ever felt). Doctors often use this chart:
I personally prefer this updated pain chart:
Types of Pain
acute pain starts suddenly and is short-term
chronic pain lasts for a longer period of time
breakthrough pain often happens in between regular, scheduled painkillers
bone pain happens when cancer is affecting a bone
soft tissue pain happens when organs, muscles or tissues are damaged or inflamed
nerve pain happens when a nerve is damaged
referred pain is when pain from one part of your body is felt in another
phantom pain is when there is pain in a part of the body that has been removed
total pain includes the emotional, social and spiritual factors that affect a person’s pain experience.
hyperalgesia – extreme and abnormally heightened sensation to pain
allodynia – Allodynia refers to central pain sensitization following normally non-painful, often repetitive, stimulation.
paresthesia – an abnormal sensation such a prickling or “pins and needles” in a part of the body caused chiefly by pressure on the peripheral nerves
visceral – pain that is felt in the thoracic, pelvic, or abdominal organs
Some of the descriptive words that are commonly used to define your pain include:
aching
tender
sharp
shooting
hot
burning
nagging
intense
stabbing
tingling
dull
throbbing
Living With Pain
For most people, pain is a response to an injury or illness and is generally short-lived. It tells us that there is a problem in the body so that we can get the proper treatment to correct the situation.
For people who live with Chronic or Persistant Pain, the body continues to send out pain signals long after the original injury or illness, or in response to an ongoing condition such as arthritis.
It’s important to talk about your pain and to work with your healthcare team to find ways to manage it. There are many treatment options available, from Cognitive Behaviour Therapy to medications such as Opioid drugs. It may help to have a trusted friend you can share with.
Some people find talk therapy a good alternative – for example, in British Columbia, Canada, there is a program from PainBC.com that pairs you up with a trained Pain Consultant in their “Coaching for Health” program.
Emotional Pain
Emotional Pain can be just as devastating as physical pain, as there is often a harder time finding ways of reducing the anguish that is felt. This is where talk therapy and Cognitive Behavour Therapy can be especially of benefit.
You may be feeling particularly distressed about the physical pain you are feeling. By seeking ways to share your emotions, you can ease the burden that’s been placed on you and come to terms with the physical pain that may now be a permanent part of your life.
I belong to a Fibromyalgia Group on Facebook calledFibro Connect. This question was recently asked and I’ve been given permission to share some answers here:
Finish this sentence: The hardest thing for me when I got chronic pain was…
Sheila Ibe McGaughey Hicks: When I don’t have anything to cure the pain and the Dr.s don’t give a da–. If it was them you can bet they would have something!!
Melissa Temple: Dealing with what I couldn’t do anymore.
Margie Daily Williams: Relationships
Vicki Fellas DeKroney: Going out with my husband and doing things we used to do. Liked dancing.
Peggy O’Connor: Having fun like I used to – it being so loud in the stores and the fluorescent lighting got to my eyes. I couldn’t wait to get home to my chihuahua and just destress. Not fun at all
Leeroy Good: I had to learn that who you talk to about certain things is important and knowing who to share with is an art.
Nikki Albert: Accept I was disabled
Marjorie Mccluskey: Sleeping
Lisa Kreimes: Having to give up my old self. The person that could do everything, and friends dropping like flies because they don’t understand why you can’t be who you once were.
Lea Cheney: To fight the anxiety and depression
Linzi Bee: I miss long dog walks so much .
Susan Weber: Everything above. You all nailed it.
Pamela Jessen: Accepting that my life was going to drastically change.
Susan Pearson: Realising I am unlikely to have children. I still try and consider other options going forward but time is ticking away and windows are narrowing. All the rest are just frustrations in comparison to this.
Conclusion
As you can see, living with Chronic Pain causes your whole life to spiral out of control. Chronic Pain affects every aspect of your life – your relationships, your work, your hobbies, your freedom, your ability to make choices…that’s why it’s crucial to work with your healthcare team to find solutions that help you. Remember…
November is Good Nutrition Month so I’d like to share some information with you to help make it your healthiest month ever! Let’s start with a definition:
nu·tri·tion/n(y)o͞oˈtriSH(ə)n/noun: nutrition
the process of providing or obtaining the food necessary for health and growth.”a guide to good nutrition”
food or nourishment.”a feeding tube gives her nutrition and water”. Similar: nourishment, nutriment, nutrients, sustenance, food, daily bread, grub, chow, nosh, scoff, victuals
the branch of science that deals with nutrients and nutrition, particularly in humans.”she took a short course in nutrition”
Origin
late Middle English: from late Latin nutritio(n- ), from nutrire ‘feed, nourish’.
Good nutrition is an important part of leading a healthy lifestyle. Combined with physical activity, your diet can help you to reach and maintain a healthy weight, reduce your risk of chronic diseases (like heart disease and cancer), and promote your overall health.
Your food choices every day help to set the tone for good nutrition. Supplements are also available to help aid you in reaching your nutritional goals.
Food Guides
Unhealthy eating habits have contributed to the obesity epidemic in the United States: about one-third of U.S. adults (33.8%) are obese and approximately 17% (or 12.5 million) of children and adolescents aged 2—19 years are obese.* Even for people at a healthy weight, a poor diet is associated with major health risks that can cause illness and even death. These include heart disease, hypertension (high blood pressure), type 2 diabetes, osteoporosis, and certain types of cancer. By making smart food choices, you can help protect yourself from these health problems.
The United States and Canada put out food guides to help people make smart choices when it comes to eating. Other countries do the same. Here are some examples:
The US uses both a Food Pyramid and a Good Plate Guide to help encourage people to eat a healthy diet. This pyramid shows the types of foods that are most recommended and the ones we should be eating more sparely (at the top) The new guide from the US helps you plan your plate appropriately, using food guidelines from the Pyramid.The 2019 Food Guide from Canada shows the types of foods you should be eating as well as the proper portions.
The risk factors for adult chronic diseases, like hypertension and type 2 diabetes, are increasingly seen in younger ages, often a result of unhealthy eating habits and increased weight gain. Dietary habits established in childhood often carry into adulthood, so teaching children how to eat healthy at a young age will help them stay healthy throughout their life.
The link between good nutrition and healthy weight, reduced chronic disease risk, and overall health is too important to ignore. By taking steps to eat healthy, you’ll be on your way to getting the nutrients your body needs to stay healthy, active, and strong. As with physical activity, making small changes in your diet can go a long way, and it’s easier than you think!
Make half your plate fruits and vegetables: Choose red, orange, and dark-green vegetables like tomatoes, sweet potatoes, and broccoli, along with other vegetables for your meals. Add fruit to meals as part of main or side dishes or as dessert. The more colorful you make your plate, the more likely you are to get the vitamins, minerals, and fiber your body needs to be healthy.
Make half the grains you eat whole grains: An easy way to eat more whole grains is to switch from a refined-grain food to a whole-grain food. For example, eat whole-wheat bread instead of white bread. Read the ingredients list and choose products that list a whole-grain ingredients first. Look for things like: “whole wheat,” “brown rice,” “bulgur,” “buckwheat,” “oatmeal,” “rolled oats,” quinoa,” or “wild rice.”
Switch to fat-free or low-fat (1%) milk: Both have the same amount of calcium and other essential nutrients as whole milk, but fewer calories and less saturated fat.
Choose a variety of lean protein foods: Meat, poultry, seafood, dry beans or peas, eggs, nuts, and seeds are considered part of the protein foods group. Select leaner cuts of ground beef (where the label says 90% lean or higher), turkey breast, or chicken breast.
Compare sodium in foods: Use the Nutrition Facts label to choose lower sodium versions of foods like soup, bread, and frozen meals. Select canned foods labeled “low sodium,” “reduced sodium,” or “no salt added.”
Drink water instead of sugary drinks: Cut calories by drinking water or unsweetened beverages. Soda, energy drinks, and sports drinks are a major source of added sugar and calories in American diets. Try adding a slice of lemon, lime, or watermelon or a splash of 100% juice to your glass of water if you want some flavor.
Eat some seafood: Seafood includes fish (such as salmon, tuna, and trout) and shellfish (such as crab, mussels, and oysters). Seafood has protein, minerals, and omega-3 fatty acids (heart-healthy fat). Adults should try to eat at least eight ounces a week of a variety of seafood. Children can eat smaller amounts of seafood, too.
Cut back on solid fats: Eat fewer foods that contain solid fats. The major sources for Americans are cakes, cookies, and other desserts (often made with butter, margarine, or shortening); pizza; processed and fatty meats (e.g., sausages, hot dogs, bacon, ribs); and ice cream.
Use the MyPlate Icon to make sure your meal is balanced and nutritious.
Tips
Prepare most of your meals at home using whole or minimally processed foods. Choose from a variety of different proteins to keep things interesting. Using catchy names for each day can help you plan. Try “Meatless Monday” with this meatless recipe.
Make an eating plan each week – this is the key to fast, easy meal preparation.
Choose recipes with plenty of vegetables and fruit. Your goal is to fill half your plate with vegetables and fruit at every meal. Choose brightly coloured fruits and vegetables each day, especially orange and dark green vegetables. Frozen or canned unsweetened fruits and vegetables are a perfect alternative to fresh produce.
Avoid sugary drinks and instead drink water. Keep a reusable water bottle in your purse or car so you can fill up wherever you are going.
Eat smaller meals more often. Eat at least three meals a day with snacks in between. When you wait too long to eat you are more likely to make unhealthy food choices.
Supplements
For some people, it may not be possible to get all the nutrients they need from food alone. Supplements are a good way to ensure that you’re as healthy as possible.
Check with your doctor who may recommend the following:
Calcium. Calcium works with vitamin D to keep bones strong at all ages. Bone loss can lead to fractures in both older women and men. Calcium is found in milk and milk products (fat-free or low-fat is best), canned fish with soft bones, dark-green leafy vegetables like kale, and foods with calcium added, like breakfast cereals.
Vitamin D. Most people’s bodies make enough vitamin D if they are in the sun for 15 to 30 minutes at least twice a week. But, if you are older, you may not be able to get enough vitamin D that way. Try adding vitamin D-fortified milk and milk products, vitamin D-fortified cereals, and fatty fish to your diet, and/or use a vitamin D supplement.
Vitamin B6. This vitamin is needed to form red blood cells. It is found in potatoes, bananas, chicken breasts, and fortified cereals.
Vitamin B12.Vitamin B12 helps keep your red blood cells and nerves healthy. While older adults need just as much vitamin B12 as other adults, some have trouble absorbing the vitamin naturally found in food. If you have this problem, your doctor may recommend that you eat foods like fortified cereals that have this vitamin added, or use a B12 supplement.
Conclusion
Improving your eating habits may seem like a challenge, but with the wide variety of fruits, vegetables and grains available, it’s actually quite easy to make good choices. Use the Plate icons as your guide for filling up, and experiment with new recipes.
Making simple changes like choosing whole grains over processed will start to become second nature and your taste buds will appreciate the new flavours as well. Introducing these healthier options to children will help them make smart choices as they grow.
I’d like to leave you with the following link to some perfect Good Health quotes! Enjoy and remember…
Living with Chronic Illness is an act of bravery. When each of your days is spent in pain and discomfort, it takes a lot of courage to keep going. I want to talk about hope…how to have it to get through your life and how it helps to keep a person going.
What is HOPE? Here is one definition I found that I think sums it up:
Hope is an optimistic state of mind that is based on an expectation of positive outcomes with respect to events and circumstances in one’s life or the world at large. As a verb, its definitions include: “expect with confidence” and “to cherish a desire with anticipation.”
Being optimistic is essential when you live with Chronic Illness, because the alternative is unacceptable. If you only see negatives, then you end up wallowing in misery and that compounds how you feel physically and mentally. I truly believe that even in the worst illnesses, there are positives to be found.
You gain a better perspective of your own strengths
You show more compassion for others who are struggling
You understand the human condition for what it is and tend to reach out more to others
Every accomplishment is a victory
You find greater wisdom from those around you
Expecting with confidence is based on faith – trusting that what you want the most will come true. Realistic faith is a good thing and ridiculous faith is even better! What is ridiculous faith? It’s when you hope and pray for something which is beyond reasonable expectations, but still anticipate that miracles could happen.
Do you need Religion to have Hope? I don’t think so. It can help in many ways, as prayer can be a very comforting thing, but I don’t think it’s necessary. Many people consider themselves Spiritual rather than Religious and find comfort in ritual, nature or other traditions. Prayer may not be a part of their lives, but they still find comfort in the routines they’ve established for themselves.
I am a Christ Follower and find prayer to be essential to my well-being. It comforts me to know that I have a God who is bigger than me and who holds me in the palm of His hand. I trust that He has a plan for my life and though I may not understand it, I accept it. Acceptance on it’s own can be comforting.
So how does one go about growing Hope in their lives? What steps do you have to take to have faith in the things that are happening in your life, good and bad?
Acknowledge your strengths. Chronic Illness can rob us of our confidence. Try making a list of all of your strengths and accomplishments. Read through the list and congratulate yourself for these positive traits. Understanding that you still have much to offer the world goes a long way in inspiring hope in the soul.
Cultivate supportive relationships. As much as you can, surround yourself with supportive and caring people. People who help you to feel good and encourage you to be your best help to increase your sense of wellbeing. Having a supportive network of friends will help you to further your interests and goals. It’s much easier to find hope within a strong community as opposed to completely on your own
Look at the activities and attitudes of people around you. See if any of them can serve as role models for what you would like to accomplish for yourself. Also, consider how the people around you act and make you feel. When you surround yourself with hope and success, it naturally trickles down into your own life. Like attracts like.
Engage in pleasurable activities. Doing things that you enjoy can also help you to develop your sense of hope. By engaging in activities that make you happy every day, you will have a greater sense of purpose. If you are not sure about what activities bring you the most joy, try out some new things to figure it out. Take a class at your local community college, try a new exercise routine (Aqua-based activities are easy on the body), learn a new skill, or start a new hobby.
Get involved with a cause. Volunteering for a cause you believe in is a great way to cultivate hope towards the future. This can be in either your local community or even an online community if mobility is an issue for you. Patient Advocacy is an area that is under-represented and working with Health Care Organizations can have a huge impact on yourself as well as others who live with Chronic Illness.
Build relationships with others. When you start to build new relationships over common goals or projects, your sense of hope can greatly increase as you see results from your efforts. Involving yourself with other people who share your interests can help you to overcome alienation, which can cause a feeling of hopelessness.
Get out of your comfort zone. This is essential to changing your thought patterns and learning to approach the world with more hope. Go out with friends after work instead of going straight home. Join a club or group so you can share new experiences with others. Develop a new hobby. Put yourself out there in ways that make you mildly uncomfortable at first.
Keep track of your thoughts and feelings in a journal. Journaling is a great way to understand why you have been feeling hopeless and it is also a great stress reliever. To get started, buy a beautiful journal and a nice pen or pencil. Choose a comfortable place and plan to devote about 20 minutes per day to writing. Start by writing about how you are feeling, what you are thinking, or whatever else is on your mind.
Try keeping a gratitude diary. Every night, think of three things you are grateful for and write them down. Doing this every day will help you to develop a more hopeful outlook and it can also help you to sleep better and enjoy better health.
Take care of yourself. Exercise, eat healthy food, get plenty of rest, and relax. By taking good care of yourself, you are sending your mind signals that you deserve to be happy and treated well which can increase your hope for the future. Make time to take care of yourself
Exercise to the best of your ability.
Eat a balanced diet of healthy foods like fruit, vegetables, whole grains, and lean proteins.
Set aside at least 15 minutes per day to relax. Practice yoga, do deep breathing exercises, or meditate.
Stay hydrated
Go for a massage or have body work such as Reiki to help balance you.
Hope doesn’t have to be a fleeting thing…it can be a strong and deciding factor in your day to day life. I live every day with the hope it will be a good day. Positivity goes a long way in making me feel better physically, mentally and spiritually. I’m realistic about what I am and am not able to do, but I never give up hope that things will be better. It’s all about attitude and choosing how you want to feel.
I hope these ideas and suggestions are useful for you. I named my blog There Is Always Hope because I truly believe that statement. Even in the worst of our moments, I believe there is always a tiny light burning bright for us. We just have to look for it. Sometimes that means stepping out of our comfort zone and doing something we never thought we were capable of, but if we can overcome our fear, we may be surprised as to what we find.
And so I end this post as I always do and I mean it even more today…
Today we meet my final guest for Interview October, the wonderful Elisa Austin. Please join me in welcoming her!
Introduce yourself and tell us a bit about you…
I am a 50 year old, mother of eight and grandmother. I’m a photographer and writer.
One fascinating fact about me is:
I am still existing.
Chronic illness(es)/disabilities I have…
I have underactive thyroid (Hashimoto’s), Fibromyalgia, and IBS
My symptoms/condition began…
The thyroid condition was diagnosed in 1999 because I was just “off” and “dragging.” Fibromyalgia was diagnosed in 2004 although I believe symptoms began earlier.
My diagnosis process was…
My doctor ruled out most things with blood tests and sent me to a rheumatologist. The rheumatologist ruled out RA and by process of elimination Fibromyalgia was diagnosed.
The hardest part of living with my illness/disabilities is…
Knowing there is no cure and I will have to deal with the pain every day for the rest of my life.
A typical day for me involves…
Medication, necessary appointments or activities, and with luck some housework.
The one thing I cannot live without is…
It rotates through warm baths, heating pads, aromatherapy, family, exercise
Being ill/disabled has taught me…
That I’m stronger and more determined than I had originally thought.
My support system is…
My family and an online group
If I had one day symptom/disability-free I would…
I don’t even know. I no longer make plans or have dreams.
One positive of having a chronic illness/disability is…
I have another great interview to share with you today…please meet Shantay Marsh Thompson!
Introduce yourself and tell us a bit about you…
My name is Shantay Marsh Thompson, and I am 42 years old. I have two grown kids that are working, and one is in college. I spend my time taking online classes since I am not able to work. I spend my time in the house the majority of the time because walking too much makes my back hurt. I do not go to stores to shop. I shop online or if it is something personal that I need, I will go to Dollar General so I can get in and out. My mother does the grocery shopping for me.
One fascinating fact about me is:
That even though I am down with this illness, I continue to learn academically.
Chronic illness(es)/disabilities I have…
I have Fibromyalgia with chronic back pain, depression, Neuralgia, Arthralgia, and Dyslipidemia. The pain in my back is worse. I have trouble sitting and standing for long periods.
My symptoms/condition began…
In 2013 after being diagnosed with endometriosis. After I had my procedure, I started hurting badly after a month. I went back to my gynecologist and asked him to please give me a hysterectomy because I needed to work. I had to wait four months before I could get the hysterectomy, so I continued to work in pain. After I had my hysterectomy in 2014, the pain was still there. I worked for about a month then had to quit my job because I could not stand nor sit for long periods.
My diagnosis process was…
Terrible. I went through several doctors in Tuscaloosa, AL. Nobody would give me the help that I needed. I cried every day because my pain was so bad. The medicine they gave me, such as Tramadol did not do anything for me. I had to move back to Mobile County to find me a doctor that could help me. I found one, and he gave me some medicine that would help me reduce the pain some. It was June 2015 before I got a diagnosis.
The hardest part of living with my illness/disabilities is…
Dealing with the pain in my back. I have tried Fibromyalgia lotions and nothing seems to work good.
A typical day for me involves…
Laying in my bed watching tv or doing some schoolwork. I make myself go to the gym to at least once a week to do strength training and walking but I pay for it the next day.
The one thing I cannot live without is…
My Lyrica. I have bad nerve pain so I take Lyrica. After my daughter turned 19 in April, my medicaid ended so I had to go without Lyrica for some weeks and I was in pain.
Being ill/disabled has taught me…
How to appreciate life more and do not take anything for granted. I have worked since I graduated in 1995 and I never thought my working career would end in 2014.
My support system is…
My one friend, my family, my fiancé, my church family, and the FIBRO CONNECT Group.
If I had one day symptom/disability-free I would…
Get out the house and treat myself.
One positive of having a chronic illness/disability is…
Being thankful that it is not a deadly illness.
One final thing I want people to know is:
Fibromyalgia is real. I would not wish this pain on no one.
I’m excited to share my next guest’s story with you…please meet Jennifer Van Haitsma!
Introduce yourself and tell us a bit about you…
Hi! My name is Jennifer Van Haitsma, the writer behind the blog Diffusing the Tension. I am 33 and I live in Northwest Indiana (about an hour from Chicago). I’m married to my love of 14 years, and we have 2 amazing children. (They are 4.5 and 2.5). In my spare time, I love to watch TV. I’m an avid binge watcher when I can. I especially love British period dramas, procedurals, and true crime documentaries. I also love to read. My goal is to read 35 books this year. I try to workout several days a week as well.
One fascinating fact about me is:
I am terrified of heights. It is strange because I am not afraid of rollercoasters or airplane rides, but any other situation involving heights petrifies me.
Chronic illness(es)/disabilities I have…
I live with bipolar disorder and chronic fatigue. Originally, I was diagnosed with depression, but my diagnosis changed about 10 years ago.
My symptoms/condition began…
I began to exhibit symptoms of depression when I was 9 years old. I was a little more withdrawn at school and acted out a bit more at home, from what I can remember.
My diagnosis process was…
When I was 12 or 13 my mom took my to my first therapist. I remember not even wanting to talk to her at first. I had a lot of anger after my cousin’s death in 1995 (when my symptoms started) and really didn’t want to let a stranger climb the walls I had built inside. But ultimately, I was diagnosed with depression. In 2009, at age 23, I began to exhibit symptoms of mania (hyper productivity, irritability, and sabotaging relationships.) I sought treatment again, and in 2010 I was labeled bipolar 2 with rapid cycling mixed episodes.
The hardest part of living with my illness/disabilities is…
Definitely the effects it has on those around me. I sometimes lose my patience when it’s not necessary, and take it out on my husband and children, which makes me feel deeply ashamed. Another incredibly hard part is the fatigue. I am so tired that it is hard to stay awake past 7:30pm.
A typical day for me involves…
Taking the day an hour at a time. I make the kids breakfast, then we do whatever we can to pass the time until lunch, etc. My fatigue makes it hard to stick to a schedule with them currently, as I often need to lie down for prolonged periods of time.
The one thing I cannot live without is…
My phone! It is where I store my pictures, others’ phone numbers, others’ address, where I get my entertainment, where I keep my to do lists… My phone is the central hub of my daily activity.
Being ill/disabled has taught me…
It had taught me resilience in a way that nothing else could. I have had to learn that each day is a fresh start, and it is possible to make the most of my situation. It has also taught me the power of speaking about my journey so that I can help others through theirs.
My support system is…
My biggest supporters are my husband and parents. My husband is my best friend, and he is always patient with me when my illness gets bad, and always stays by my side. My parents provide a lot of support where my husband can’t. The girls get a lot of play time with their grandmas during the day when he is working and I need the help.
If I had one day symptom/disability-free I would…
It’s funny how hard it is to imagine myself without my illness! I think I would get in a long workout and then spend the day doing fun things with the girls. Maybe a trip to the zoo or a local amusement park, if the weather was good.
One positive of having a chronic illness/disability is…
It helps you have more empathy for others who struggle. Before my diagnosis, I’m sure I often looked down on people with chronic illness. Now, I know they are just that: people.
One final thing I want people to know is:
I am not my illness. I am so much more than just bipolar. I am a wife, a mom, a bookworm, a TV addict, a fitness nut, a friend, a sister, a daughter, a person.
It’s time to meet my next guest, the lovely Jamie Pirtle. Enjoy her story!
Introduce yourself and tell us a bit about you…
I was born blind in one eye and with a condition called nystagmus, where my eyes continually move. The doctors are not sure why, but have suspicions that it could be because my mom smoked and had mono while pregnant.
I grew up in the south eating meat, potatoes, gravy and biscuits almost every meal. My way of eating was pretty much carbs, carbs and more carbs. A meal without a potato was pretty much a sin.
As a teen, I started to eat junk food, including diet coke and snickers for lunch and the diagnoses started coming in during my late 20’s.
Conditions you have been diagnosed with:
Mitral Valve Prolapse
High Cholesterol
Arthritis (in remission)
IBS
Lupus (in remission)
Ankylosing spondylitis (in remission)
Endometriosis (had hysterectomy)
Thyroid cancer (removed and now take meds)
I can remember staying in the bed all day one Mother’s Day crying because I couldn’t play with my 2-year-old daughter or go see my mom. The pain and unpredictable bowel movements were just too much.
I didn’t get to take vacation from work because I used all my time off going to specialist and staying home sick.
I can’t wait to hear about YOUR progress!
At about age 49, I started following a health coach on Facebook and listening to him talk about how what we eat results in autoimmune diseases. This coupled with returning from a cruise so sick I missed another week of work, I decided I had to do something
I first went gluten free and started eliminating junk food and diet cokes. Next, I cut out all aspartame, high fructose corn syrup and most fried foods. This helped, but there was still something missing.
Then I was diagnosed with thyroid cancer. When you hear these dreaded words, your world stops. I remember sitting in the parking lot of the doctor’s office talking to my husband on the phone and saying, I have to figure out what is causing this.
I started studying everything I could get my hands on and decided the only way to go was to eat whole, mostly organic foods. I also cut out as many carbs as I could and cut way back on sugar.
After improving my lifestyle, I feel SO much better in my 50’s than I ever did in my 30’s and 40’s. I went from taking 9, yes NINE daily prescriptions to just ONE (my necessary thyroid medicine) and eliminated the pain associated with several autoimmune diseases.
One fascinating fact about me is:
I went back to school at age 53 and became a certified health coach so I can help others get healthy and not have to live in pain like I did. I also beat cancer and plan to stay cancer free!
My symptoms/condition began…
In my late 20’s. (born with the eyes)
My diagnosis process was…
Long and tedious. The doctors just kept telling me I was too stressed at work and I needed to learn to relax. I also knew something was wrong with my thyroid and it took almost 2 years for doctors to finally find the cancer after I insisted on a sonogram and biopsy.
The hardest part of living with my illness/disabilities is…
People think I am ignoring them when I cannot see them out of my bad eye or they think I’m drunk or high as my eyes move. When I was in school the teachers thought I was day dreaming because it was easier for me to focus on them by turning my head and creating a null point that made my eyes stop moving. It is also hard to do fun activities like bowling due to some joint pain from time to time.
A typical day for me involves…
Eating healthy and making sure I drink lots of water, take my supplements, use essential oils and remember the food makes a HUGE difference in how I feel. I work a demanding manager job with a large aero defense company and have a side gig as a heath coach and blogger.
The one thing I cannot live without is…
My glasses for sure! But also, healthy foods and supplements – I take lots of supplements.
Being ill/disabled has taught me…
That life is precious and we really are what we eat. I have also learned not to push myself and to try to destress as much as possible.
My support system is…
My husband, family and friends. I have also found joy now in my health coaching clients. It is such a great feeling to see them losing weight and regaining energy.
If I had one day symptom/disability-free I would…
Go watch a 3D movie! They don’t work for me with my bad eyes.
One positive of having a chronic illness/disability is…
It has made me strong and made me a lifelong learner. I can no longer rely on others to make medical decisions for me and research everything a doctor tells me.
One final thing I want people to know is:
Food is a HUGE factor in your health and how you feel. Unfortunately, many doctors want to give you a pill and not educate you on the importance of good nutrition.
I’m delighted to introduce my next guest to you. This is Jenny Jones and here is her story:
Introduce yourself and tell us a bit about you…
I’m Jenny and I share my story of rare disease and chronic illness on my blog Life’s a Polyp. I have a Master’s in Social Work and provide behavioural health services to dialysis patients.
One fascinating fact about me is:
I started a research fund through National Organization for Rare Disorders (NORD) for the rare disease of Familial Adenomatous Polyposis (FAP). Life’s a Polyp shop has several designs across a variety of merchandise that helps to raise awareness of rare disease but also supports the FAP Research Fund through NORD.
Chronic illness(es)/disabilities I have…
I have two rare diseases – Familial Adenomatous Polyposis (FAP) and Short Bowel Syndrome (SBS). FAP is a hereditary, rare disease that causes 100s to 1000s of pre-cancerous polyps to develop in the colon as well as extracolonic manifestations. SBS results when too much of the colon and even the small intestine is damaged or removed resulting in malabsorption of nutrients and fluids that is often complicated by severe diarrhea and dehydration.
My symptoms/condition began…
FAP is a genetic disease that I was born with but I also developed Short Bowel Syndrome due to my colon and part of my small intestine being removed as part of my treatment for FAP.
My diagnosis process was…
I was diagnosed when I was about 8 years old after having stomach pain from a pre-ulcerous condition which led my GI doctor to complete genetic testing due to my family history of FAP. It was difficult to obtain a referral to a GI doctor as my PCP told my parents I was “just a whiny child” and nothing was wrong with me.
The hardest part of living with my illness/disabilities is…
Never knowing what the day will be like or what the future will be. Working to be able to support myself is my primary goal in life and the best physical health years of my life are behind me now. I am terrified of the day that I will no longer be able to work and support myself.
A typical day for me involves…
I work full time – 5 days a week but after work and on the weekends I require a lot of resting time to recuperate from the work week so that I may work the next week. Sometimes I enjoy outings with friends and family but I have to balance all of my activities with rest periods in order to continue functioning.
The one thing I cannot live without is…
My parents – they are my foundation and support in life. They help keep me going while providing assistance as needed to care for myself. I would be lost without them.
Being ill/disabled has taught me…
The importance of taking physical and emotional care of myself and advocating for myself so that I may continue to maintain optimal functioning ability.
My support system is…
My parents and a few select friends make up my support system. I also receive encouragement from online groups for FAP and SBS.
If I had one day symptom/disability-free I would…
Probably spend the day engaging in all the activities I typically am unable to complete or am leery about completing due to my SBS symptoms.
One positive of having a chronic illness/disability is…
Chronic illness teaches us perseverance and empathy – both qualities that are important in caring for ourselves and understanding others.
One final thing I want people to know is:
Chronic illness is hard to live with – both physically and psychologically. Counseling can be a key component of learning to accept and cope with chronic illness in a healthy way. It is also essential to be proactive in one’s care to ensure the best treatment possible from all medical providers.
My next guest is the amazing Sam Moss from Australia. She has a fascinating story so I hope you enjoy reading about her!
Introduce yourself and tell us a bit about you…
Hi, I’m Sam and I live with my beautiful husband in Australia. I have been living with a series of complex medical conditions for over 9 years now. In 2014 my health deteriorated to the point of needing to medically retire.
I had lived life in the fast lane for 30 years with a successful management career in financial services. Prior to medically retiring I was an Executive Manager in the Financial Services Industry. A career I loved as it predominately involved coaching and developing a Leadership team.
I also enjoyed various change management consultancy roles for not for profit organisations. I loved every minute of those able bodied years and am very grateful for the experiences I have had.
My career highlights include;
Contributing to creating an award winning customer experience culture in the various Banking and Insurance departments I’ve managed.
Leading an inspired and motivated team of people, many of whom are now lifelong friends.
Receiving the inaugural Banking Leader of the Year Award just before I medically retired (such a special parting gift)
Restoring an historic church building to its former glory,
Appointed as a management consultant in the Anglican Church, and assisted Senior Church Leaders (Clergy and Lay) to bring about exciting reformative change.
Now I’m medically retired I’m exploring my long term passion to be a writer. I’m a member of the Chronic Illness Bloggers Network and an ongoing contributor to “The Mighty”.
With time on my hands I decided to start a blog called ” My Medical Musings” as a way to reach out to others dealing with life changing health episodes. I also founded a Global online support forum, “Medical Musings with Friends”. It’s a place for those living with chronic illness or their carers, wanting the hand of friendship, as they journey an often lonely and difficult path.
It is a place to laugh, cry, share and vent together. It’s my absolute passion and honour to walk daily with others who understand exactly what it is like living with chronic illness.
When health gets complex, it’s really important to find others who are also battling multiple issues to share the never-ending complexities that arise and share all aspects of life living with chronic disease.
One fascinating fact about me is:
Not sure there’s much fascinating about me at all. My husband and I have moved 17 times in 24 years of marriage!! Some of those moves have been interstate and we have seen a lot of Australia as a result. That part has been a blessing.
Yes we are expert movers and this last move is definitely it. The combination of my husband’s work as an Anglican minister and my work in the Bank, was the reason for the majority of the moves. We have just settled into a lovely Lifestyle village which works perfectly for my disabilities, so hopefully no need to move again…EVER!!!
Chronic illness(es)/disabilities I have…
The list is way longer and complex than I would like, but here goes:
Rheumatoid Arthritis ( diagnosed 2010)
Sjogrens Syndrome ( diagnosed 2011)
Prolapsed Rectum ( diagnosed 2011)
Permanent Colostomy ( 2013)
Progressive Rare Bone Disease which causes my long bones to pathologically fracture. This includes both my femurs, 7 foot fractures, spinal fractures and severe Lumbar Spinal Stenosis with compressed spinal cord. Fractures won’t heal and surgery to fix my spine constantly fails as the bone disease continues to attack it.
My symptoms/condition began…
In 2010 I was in my mid 40’s, at the height of my career as an Executive Manager in a major bank.
In April of that year I was getting ready to take 6 weeks long service leave to spend some quality time with my beautiful husband. We were going on a road trip through South East Queensland down to the Hunter Valley in Northern NSW and I was so looking forward to having a break.
On the way home I started feeling really unwell and I just couldn’t shake off an extreme tiredness, joint pain like I had never experienced and abdominal pain. My hands were so sore that even the slightest touch was excruciating. I couldn’t hold my husband’s hand or pick anything up. My hips were so painful that walking normally was becoming difficult unless my husband supported me. We knew something was not right.
As soon as we got home we headed for my GP and a whole list of Specialist appointments followed. Long story short, 2 months later I was diagnosed with Rheumatoid Arthritis (RA) after being first diagnosed with Q fever, Ross River Virus and a list of other false positive diagnoses.
My body was not behaving normally and my Doctors and I were to discover over the next 6 years just how abnormal it actually was. I had no idea what lay ahead.
As time went on…
With RA medication on board, I continued to work for another 12 months before my body began to basically break down bit by bit. My last day in the office was Melbourne Cup Day 2011. I was trying to push through the day and getting ready to judge my Departments “Fashion on the Fields” when my Personal Assistant found me in agony in the ladies bathroom and rang my husband to come and pick me up.
From that day my life was never to be the same again.
In 2011, I was diagnosed with a prolapsed bowel which refused to mend despite 3 attempts at conservative surgery. By mid-2013 we knew we had no choice but to accept that I needed a permanent stoma.
In November 2013 I medically retired and became the “proud” owner of a permanent colostomy. It has been quite a journey with my medical team including a Clinical Immunologist, Colorectal Surgeon, Endocrinologist, Orthopaedic Surgeon, Gynaecologist, Ear Nose and Throat Specialist, Infectious Disease Specialist, Neurologist and Dermatologist, all trying to work out what is causing my health issues.
I have been called “special”, “unique”, “one of a kind” but really they all believe overall, aside from Rheumatoid Arthritis, I have a rare idiopathic disease (a disease of its own kind).
I have lost count of the number of times I have been hospitalised over the past 8 years. I have had 14 surgeries since October 2010, with the prospect of more ahead.
I thought Rheumatoid Arthritis and a permanent colostomy would be an end to what my body was going to challenge me with. I hoped I could settle comfortably into medical retirement with my husband but I soon came to realise that my life was going to be an ongoing medical adventure.
Bone Fractures…
In October 2014 my left femur (thigh bone) broke spontaneously. Yes, all on its own, I didn’t fall from a great height or have a major car crash, which is apparently the type of accident I should have been involved in to have the strongest bone in my body break. Mine just broke as I was opening my bedroom door!
It is called a pathological break and my Specialists believe I have a rare genetic bone disease. My bones are extremely dense and marble like and my bone turnover is almost non-existent. We also now know that my bones are dying and much of the soft tissue around my bones is also dead tissue.
12 months after my leg broke, my right femur was also showing signs of disease on MRI with bone marrow involvement so a rod had to be placed in that to prevent an imminent break and repeat medical emergency like we had with my femur break in 2014.
I am constantly dealing with multiple foot fractures and none of my broken bones in my legs or feet will heal. My bone pain is excruciating on a daily basis. My left femur which snapped in two is still broken nearly 5 years later and has been diagnosed as a non-union break. I have been on two crutches or a walker since the femur broke and also have a mobility scooter. The disease is now attacking my spine and causing excess bone to grow into the spinal cord. Despite surgeries to try and remove the bone, it grows back so quickly the surgeries are deemed as “failed”.
My diagnosis process was…
Complicated to say the least. As above it was a long process but also quick in the sense that I was referred to the right Specialists and soon had a team working on my case to try and work out what was going on. Some diagnoses were by chance. 6 months prior to my femur snapping in two, my Clinical Immunologist had sent me for a Bone Density Scan.
His concern was low bone density (Osteoporosis) because I had been on Prednisone for 4 years. He was so surprised to find I had extremely high bone density, really high. That just shouldn’t have been the case. He quickly referred me to an Endocrinologist who began monitoring my bone blood markers. All was not good. High Bone Density and low bone turnover meant new bone was being laid down but the old bone wasn’t being replaced. Bone was being added to bone and my skeleton was getting thicker and thicker.
I remember my Endocrinologist saying, “hopefully it will just settle and you won’t get any broken bones”.
I was suffering with terrible bone pain and within 6 months of her comment she was by my hospital bed in a state of shock as my left femur had snapped in two so spectacularly. I was so blessed to be alive as I was told it could have severed my femoral artery. I was also the pinup girl in the hospital…well, my x-ray was!!
The hardest part of living with my illness/disabilities is…
For me it’s the constant daily pain and exhaustion that accompanies it.
A typical day for me involves…
Morning…
Wake up around 6.30am, from a generally broken night’s sleep;
Take pills before I try to get out of bed. Crutches await my descent from my bed….the first effort to get out always fails. I just can’t weight bear until the pills help a little. My back often paralyses my legs and I simply can’t move until anti-inflammatory meds help take the pressure off my spine. When I first get up I only get as far as the ensuite and then straight back to bed;
Eventually I make it to the kitchen and put the kettle on. Depending on how I am feeling and if I need to stand rather than sit, I’ll make a simple breakfast of cereal with banana and a cup of tea. If I can’t do it my husband does. We sit and eat breakfast in the lounge room and watch the morning news and chat together. I also check in on my online support forum, emails and messages;
I take my second set of morning pills with food. These help but they fatigue me for the first 2 hours of the day making it even harder to coordinate movement;
I rarely cry. I don’t feel sorry for myself. I’ve become used to my circumstances, although I still make plans in my head of all I’d like to do during the day, knowing that I’ll be eliminating items from that list constantly. Staying perfectly still the leg hurts but it’s a duller pain.
The slightest movement and it’s like I’ve broken it all over again. Fractured feet and stress fractures in the opposite leg add to my overall disability. The stenosis is by far the most crippling. Even lying down only brings temporary relief and I soon have to get up and try and move;
I’m determined but after breakfast I have no energy to get dressed just yet. I leave showering until the evening after dinner. So much easier to shower then knowing I can collapse into bed straight away.
In the morning I want to run around and stack the dishwasher, dust the furniture, get dressed and do my hair and makeup all before 7.30am. Ha! Not happening! I used to move at such a fast pace. I miss that. I will do all those things but it will take me 3 or 4 hours at a ridiculously slow pace.
I get told others should do those tasks for me but it is so important for my well-being that I keep as much independence as I possibly can. My husband does all the washing and cooking as that is outside of my capabilities.
I still have goals to get better and resume those activities, even though I know it’s unlikely. There is no cure for my disease, it’s progressive and my prognosis is unknown.
Afternoon…
After lunch the fatigue from battling the pain is beyond belief so I need to lie on the bed for at least an hour, if not longer. I’m not a day time sleeper so I just relax as best I can, read, watch TV, blog, write articles and manage my online forum.
In the late afternoon my husband and I will have afternoon tea on our back patio. The fresh air and sitting in our little courtyard/garden brings me so much joy and is so relaxing. We’ve set it up like our own private cafe and I arrange our afternoon tea as if it were served at a boutique coffee shop or tea house. The simple things bring such joy.
I sit in the lounge room for dinner while we watch the news. I take my evening pills, shower and am back in bed by 8pm. My husband joins me by 9pm and we watch TV together. We love our evenings.
I rarely leave the house aside from medical appointments but I still have goals to get out a little more and we’ve started to achieve those once a fortnight.
Stoma…
All of the above is my normal routine unless my stoma becomes over active. I then have to manage changing my stoma appliance, putting all best laid plans out to pasture.
(I have a permanent colostomy due to a severe rectal prolapse. A ‘colostomy’ is a stoma formed by bringing part of your colon (large bowel) out on to the surface of your abdomen).
I do actually love my stoma, which I’ve had for 6 years on the 11th November. The pain and disability from having a severe rectal prolapse was horrific. My stoma restored some quality of life and I’m so grateful for it.
The one thing I cannot live without is…
My husband
Being ill/disabled has taught me…
Life isn’t over with a chronic illness diagnosis and disability. It’s just different. New opportunities to connect with others and pursue new passions and goals, is achievable. It’s all about our mindsets. It’s about choosing to embrace new ways of living. I’ve learned to focus on enjoying moments, rather than planning ahead for good days/weeks or months.
In many ways so much of my life has changed, but nothing has changed where my faith and trust in God is concerned. I am resolved to make the best of each and every day I am blessed with.
I love each day, as I know despite my unrelenting pain, I will have moments within the day that bring joy, laughter and connection with others in some small way. Just writing this has been something I’ve enjoyed. I will definitely be collapsing on the bed straight afterwards but it’s been a delight and an honour to collaborate with Pamela on her blog.
My support system is…
My Husband is my full time carer and my main support.
My Online Support Forum Members provide me with so much love and encouragement on a daily basis
Close Friends who stay in touch with a text, email or a visit (for those who live close enough)
Our family all live interstate or a few hours away so we don’t get to see each other in person much but they are amazing in their care and concern, and also regularly text, email and phone my husband and I.
I have Government Funded support for Physio, Podiatry, Occupational Therapy, Carers, transport, home modifications, plus permanent approval for Residential Care if my health progresses to the stage of need 24 hour around the clock care.
Our Church, although having just moved to a new suburb, we are still in the process of forming new connections.
If I had one day symptom/disability-free I would…
Go for a long drive with my husband in the country. Visit little towns, stop at gorgeous cafes and walk for miles around country shops.
One positive of having a chronic illness/disability is…
I think having true empathy for others suffering with chronic illness/ disability has been a growing experience for me. We think we understand what it’s like but when you’re relatively healthy, life is busy and we don’t take enough time to look outside of our own world, to truly understand another’s needs and struggles.
Ultimately the one positive….. the gift of time
One final thing I want people to know is:
That moment when the focus shifts to the possible, rather than looking at the impossible, is a life changing moment. It’s the moment a cheerful heart has room to emerge, despite our chronic illness
It’s time to introduce my next guest, the vibrant Miss Aleisha Crabb. I’m delighted to share her story here!
Introduce yourself and tell us a bit about you…
My name is Aleisha & I live in Canberra, Australia. I was born in a country town in New South Wales called Dubbo & my parents moved to Canberra when I was 1 year old.
I am a Nurse, and I work in Drug & Alcohol. My work has given me an amazing insight into human nature, and the complexities surrounding chronic pain, opioid use & addictions. I absolutely love my job & cannot imagine working anywhere better considering my own life experience of chronic pain.
One fascinating fact about me is:
I have a ridiculous good memory for movie/TV show quotes. I remember the most bizarrely un-memorable lines from movies & shows, haha.
I injured my knee in my first year of nursing. That injury seems to have been the catalyst for triggering the onslaught of my Psoriatic Arthritis.
My diagnosis process was…
Tedious. The GP I was seeing when I first injured my knee was what I now know to be quite lazy, and was very disinterested in holistic care.
It took a very long time for him to refer me to a Rheumatologist, but when I eventually was, I was triaged as urgent & was seen in weeks. Some people have had to wait over 12 months to get into them, so for that I am very grateful.
From there I was diagnosed first as Undifferentiated Spondyloarthropathy, and as my symptoms progressed, and more specific symptoms presented, I was eventually diagnosed with Psoriatic Arthritis.
The majority of my other conditions were more easily & quickly diagnosed.
The hardest part of living with my illness/disabilities is…
The fatigue. Pain is something I have learned to manage, but the severely depleted energy levels is not something I have ever been able to successfully become accustomed to.
A typical day for me involves…
Wake up around 730am.
Medication and breakfast (if I am feeling up to it, sometimes I am too tired/nauseous).
Feed the cat. He will look at me forlornly (and disdainfully) if I don’t 😉
Work is from 9am – 530pm. (I have had my start time adjusted to 9am from 830am so that I am able to manage morning stiffness from my PsA. This gives me an extra 1hour at home due to peak hour traffic!)
Home for dinner around 6pm. Sometimes I have cooked something, othertimes it is takeaway or a pre-delivered meal service like Lite & Easy.
Medications around 7pm as one is to prepare for sleep.
Bed at 9pm after a shower usually. I do a nighttime meditation to help sleep.
The one thing I cannot live without is…
My cat. He is my ever present comfort, amusement & joy throughout the trials & tribulations of chronic illness.
Being ill/disabled has taught me…
To slow down & enjoy life. I am so relaxed about life & what I am able to enjoy now.
My support system is…
My family & close friends. They are essential to my emotional wellbeing 😊
If I had one day symptom/disability-free I would…
Walk up a mountain to have a picnic, visit a remote Indigenous site in Australia that requires lots of walking to access & camp under the stars without my CPAP machine!
One positive of having a chronic illness/disability is…
The people I have connected with as a result 😊 . The connections I have made since becoming chronically ill have become incredibly important and special to me, and I have made some lifelong friends.
Having people in your life who understand the difficulties associated with chronic illnesses and disabilities, can relate to the challenges and frustrations you face every day and truly care about your wellbeing can never be underestimated.
One final thing I want people to know is:
Its OK not to be OK.
The biggest challenge for me has been slowing down & how difficult that has been at times. I was always an active person before I became unwell; always taking on lots of challenges. Now, I have to drastically limit my activities in any given day as overactivity can bring on severe flares. This was a huge change for me & emotionally I was quite overwhelmed & became very anxious.
I want all people to know it is ALWAYS OK to tell others that they need more support if they are finding the emotional toll of their chronic illness/disabilities too hard to manage on their own.
It’s time to meet my next guest, the fabulous Keiran Potter! I’m excited about what he has to share!
Introduce yourself and tell us a bit about you…
Hello, my name is Keiran Potter, I am 21 years old and I am from the South West of England. I am currently studying English Literature and Creative Writing at University and hope to pursue a career as a writer if all goes to plan. But you know what they say, best laid plans of mice and men often go awry.
One fascinating fact about me is:
Not sure how fascinating any of my facts are but I am 22 this month and still often get mistaken for a 12 year old at my local shops. Oh and I’m gay, not fascinating but definitely a fact.
Chronic illness(es)/disabilities I have…
Celiac Disease and Various Mental Health problems but for the sake of this interview I’ll focus on the former
My symptoms/condition began…
The symptoms of Celiac were present for an awful long time before I recognised them as something that could be potentially sinister. The stomach pain, migraines and bleeding had been such a regular thing for me, that it became the norm and I failed to question it for a long time. So I’d say as long as I remember I have had the issue but it wasn’t further explored until May 2018
My diagnosis process was…
I had to have blood tests and several other samples. Celiac Disease can share some symptoms with other serious conditions like intestinal cancers, so my doctor was pretty concerned. Once they came back I got referred to a specialist on a 9 month waiting list. In the interim they told me to research about Celiac Disease and cut out Gluten from my diet. They failed to tell me that by doing this it would also put other aspects of my health at risk. Such as my heart.
When I was referred I was then asked to eat Gluten again after being gluten-free for 9 months, in order to have an upper endoscopy and biopsy of my intestines.
So all of my symptoms got more aggressive and I was in constant pain as my body had began healing in the 9 months that I had known about my potential diagnosis
The first biopsy was inconclusive. I had to wait another 3 months and get another one done. It was quite a hellish experience to be honest but I finally got the 100% confirmation of the disease. Which in many ways was a blessing as I finally had some answers
The hardest part of living with my illness/disabilities is…
The constant vigilance and endless fatigue and stomach pain. Even when doing everything you should be doing. Sometimes you have issues for no apparent reason and there is literally no answer to appease your concerns or pain.
A typical day for me involves…
A lot of thinking ahead about the risks of everyday living. Such as eating or spending the day out of the house in an unfamiliar place. A lot of time spent on or near a toilet. University, I study English and Creative Writing. Lots of medication but thankfully a lot of laughs
The one thing I cannot live without is…
Not really a thing but my support system and the people who help and love me the most. I quite literally would not be alive if it wasn’t for them.
Being ill/disabled has taught me…
To value every aspect of your life for what it is. You never know when those simple joys may be taken from you. It has also made me more appreciative of health in general. Our bodies are not as indestructible as we may like to think sometimes
My support system is…
My Family, my mum specifically. I don’t think I would show up to half of the appointments I have if it wasn’t for her dragging me there by the ear. I’m very grateful for all the help and care she gives me
If I had one day symptom/disability-free I would…
Eat some Chinese food and go do something productive and just enjoy the day without the illness. I would take advantage of some of the freedoms that I feel I don’t have as much access too since my illnesses have truly taken a hold on my life
One positive of having a chronic illness/disability is…
I think one positive is how you can then use your knowledge of your own body and conditions to educate and help others. There is also a sense of community instantly when you find people who struggle with the same illnesses and experiences. It’s important that all voices are heard, so I’m glad interviews like this amplify the voices of disabled or chronically ill people.
One final thing I want people to know is:
Only because a person may not look ill, it doesn’t mean they are not struggling everyday to live their life as normally as possible. Always be kind to everyone you meet as even if you can’t physically see it, that person could be in pain and/ or mental strife. A smile could always brighten up their day
I’m pleased to announce that Melissa Temple is my next guest for Interview October. Let’s read what this lovely lady has to say:
Introduce yourself and tell us a bit about you…
Hi. My name is Melissa Temple. I am 40 years old. I am a disability, fibromyalgia, chronic illness and Disney blogger. I am married and have 1 child. I had a blog called HappyFibroGirl but wanted to do more than fibro. So with my husband of 19 years we started Disabled Disney.
Chronic illness(es)/disabilities I have…
Osteo-Arthritis, Fibromyalgia, Depression, Anxiety, Type 2 Diabetes, Asthma, Endometriosis.
My symptoms/condition began…
I had arthritis symptoms in my 20’s but wasn’t diagnosed until my 30’s. My fibro symptoms really started after having knee surgery and a hysterectomy from severe endometriosis.
My diagnosis process was…
I went to my primary care and told her about all my pain. She said she was pretty sure I had fibromyalgia. She sent me to pain management. The pain management doctor agreed.
The hardest part of living with my illness/disabilities is…
Not being able to do everything I used to be able to do. I can’t hardly walk or stand anymore. I used to dance, hike, swim, and do so many physical things! I used to be a Certified Nursing Assistant (CNA) but I had to stop because I couldn’t stand anymore for long periods.
A typical day for me involves…
Medications when I wake up..doing some posting on social media for my blog..and eating breakfast…then a nap…then more meds and some more work on my blog and lunch…then another nap…then some more work on the blog if I’m feeling up to it…then more meds and dinner….then watching tv until bed….then more meds…then bed…
The one thing I cannot live without is…
My husband, my cell phone and my muscle relaxers. My husband is my reason to keep pushing and going, he is my light in the dark and the love of my life. My cell phone is where I do a lot of my blog stuff. It also keeps me connected to the outside world when I am very isolated at home. My muscled relaxers…if I don’t take them I can’t move.
Being ill/disabled has taught me…
Really enjoy everything because you may not always have it and you won’t know your about to lose it!
What advice would I give someone recently diagnosed…
Be an advocate for yourself. Yes the doctors have gone to school but you know yourself and you have to live your life…they don’t.
My support system is…
My hubby, my daughter and all my fibro friends on Facebook and my blogger friends on Twitter.
If I had one day symptom/disability-free I would…
I would dance, go hiking, run and jump…I would go walking around a mall….I would volunteer and be out!
One positive of having a chronic illness/disability is…
It’s time for the annual series I run on There Is Always Hope called Interview October. I have spent time asking questions about health conditions that these amazing people are living with, and their replies help bring education and hope to my readers.
Today, we’re meeting my dear friend Michelle Curtis who runs the blog site The Zebra Pit. Let’s hear her story!
Include a photograph of yourself:
Introduce yourself and tell us a bit about you…
Hello! I’m a 47 year old queer disabled woman living in greater Cincinnati. I live a housebound life due to my conditions. Though I am completely disabled by my conditions, I work from home doing freelance writing and managing two websites. Lately, I’ve been working on reviving my creative writing career as a poet and fiction writer, as I’ve managed to improve my cognitive deficits enough to go back to writing and editing some shorter works.
I have been happily married for over 13 years and have a grown stepson whom I love very much, but get to see very little. I am an avid fan of the arts (both high brow and pop), music and nature and consider myself a lifelong learner. I am a huge fan of sci-fi and fantasy, love to learn about astronomy, archeology and science, and spent much of my life protesting the abuse of marginalized peoples and our planet.
I hold a BA in women, gender and sexuality studies with minors in ethnic studies and creative writing and a master of fine arts degree in creative writing. Prior to becoming disabled by my conditions, I worked as everything from a cab driver to a college instructor and have experience in the fields of education, communications, business administration, human resources, healthcare and non-profits, not to mention my illustrious career in retail and banking prior to going to college.
One fascinating fact about me is:
This is always a hard question for me. I think all people are fascinating when you get to know them. I guess the thing that people are usually fascinated the most with is that almost nothing about me is considered conventional: I have disabling genetic disorders, I am neurodivergent, atheist yet spiritual, pansexual and feminist.
Chronic illness(es)/disabilities I have…
I am what is known as a Trifecta Zebra, as I have a trio of rare illnesses that are often seen together; Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS). I also have gastroparesis, IBS, Fibromyalgia, ME/CFS, Dystonia, cognitive dysfunction with significant memory loss (both long and short term), coronary arterial spasm, degenerative disc disease, osteoarthritis, CRPS in my right leg, endometriosis, and intractable migraine. I strongly suspect and am seeking diagnosis for chairi and/or craniocervical instability and autism.
My symptoms/condition began…
As a child, though my symptoms wouldn’t become really apparent until early adulthood.
My diagnosis process was…
Fraught with misdiagnoses and errors. Despite my many health problems which I reported to every doctor, I was not diagnosed with EDS until I was almost 45. I was first diagnosed with fibromyalgia around age 40 and CSF a couple of years later. A couple of years after that, I was diagnosed with POTS. I had to find EDS and MCAS, figure out that I had them and then find doctors to diagnose and begin treating them.
The hardest part of living with my illness/disabilities is…
The cognitive dysfunction. I had developmental delays as a child and everyone thought I was just plain stupid and wouldn’t do much in life. I had terrible self-esteem and no faith in my abilities. I didn’t figure out I was probably pretty smart until my mid-twenties and finally went to college because I simply couldn’t manage doing the only sorts of jobs I could get, those with a high level of physical labor.
I spent years working toward a career I thought would save me and that I loved more than I could ever imagine allowing myself to love anything. By the time I was done, I no longer had the cognitive ability left to actually do the work I’d been trained for, even if I could find ways to accommodate my deteriorating tissues.
I’m glad I’ve found new things to consume my life with and I can’t say I regret the journey. But the knowledge that I could have had a brilliant career had I the capacity to go on is sometimes too much psychic pain to bear. These days I try very hard to focus on what I can accomplish and find focusing on the present helps me to avoid these hard truths.
A typical day for me involves…
I like to say I live on tilt, because I quite literally have to. If I spend too much time in the upright position, I suffer terrible pain and cognitive symptoms and sometimes have seizures. If I’m flat on my back, I develop pain in the back of my head. So I spend much of my day tilted back in a recliner, working on my blogs and writing, trying to avoid the pain caused by being completely upright or completely prone.
Most of my time spent upright is to cook (I cannot tolerate processed foods at all), do therapies and keep up my movement routines of recumbent bike riding and strengthening exercises. In the evening, I try to relax in front of the TV or with a good book.
The one thing I cannot live without is…
Myofascial therapy! I’d be in so much pain if not for it!
Being ill/disabled has taught me…
Never to judge other people’s lives or make assumptions about why someone does something.
My support system is…
My husband is my primary source of support, but we both have chronic health conditions so things can get pretty hairy from time to time, but we usually manage! The remainder of my support comes from within the chronic illness/spoonie community.
I know there are any number of people I can turn to for emotional support or needed advice regarding my health and wellness. I would be lost without them, as I have few others in my life.
If I had one day symptom/disability-free I would…
It would be a lot like Ferris Buehler’s Day Off without the teen angst! A great deal of sightseeing, dancing and celebrating of life, topped off by an exciting and romantic evening of a show, an amazing dinner, more dancing and a carriage ride around Fountain Square.
One positive of having a chronic illness/disability is…
It’s made me take responsibility for my mental health and taught me what real support looks like, allowing me to walk away from all the toxic people in my life.
One final thing I want people to know is:
No matter how bad things get, there’s always the possibility that things will get better, as long as you keep fighting. I spent years so inundated by symptoms and disabled by my health that I could no longer see the point of living. I nearly took my own life.
I’m so glad I managed to pull myself out of that deep depression, because it turns out I have quite a lot of life left in me. How did I succeed? I started saying yes to anything that I thought could help, searching exhaustively for solutions. It worked! I found my correct diagnoses and ways to treat my pain and symptoms that affords me a life I can live with.
Now I also have some joy and a sense of my own strength. I may not have beat chronic illness, but I am doing a pretty good job of not letting it defeat me and helping others to also find things to help them.
https://mykiewritesit.blog a site to display my writing services, poetry and short stories, and discuss writing and blogging strategies and techniques.
Fibromyalgia is a condition that consists of widespread muscle pain, cognitive failures and fatigue. Because there is no standard blood test or other medical test to identify Fibro, doctors rely on Patient stories and history to make a determination, along with using the “tender point” test.
When you have Fibromyalgia, there are particular tender points that may be inflamed in 18 areas of your body. If you have pain in 11 of these areas, you are considered to have Fibromyalgia.
What happens if you are experiencing symptoms of Fibromyalgia but you DON’T have the tender points? It could be that something else is going on in your body that isn’t Fibro but is a different condition all together.
Here are some of the conditions that can mimic Fibro and a brief description of what each of them are:
Conditions
1. Multiple Sclerosis
MS is currently classified as an autoimmune disease of the central nervous system (brain, spinal cord). The disease attacks myelin, the protective covering of the nerves, causing inflammation and often damaging the myelin. Myelin is necessary for the transmission of nerve impulses through nerve fibres. If damage to myelin is slight, nerve impulses travel with minor interruptions; however, if damage is substantial and if scar tissue replaces the myelin, nerve impulses may be completely disrupted, and the nerve fibres themselves can be damaged.
MS is unpredictable and can cause symptoms such as extreme fatigue, lack of coordination, weakness, tingling, impaired sensation, vision problems, bladder problems, cognitive impairment and mood changes. Its effects can be physical, emotional and financial. Currently there is no cure, but each day researchers are learning more about what causes MS and are zeroing in on ways to prevent it.
2. Lupus
Lupus is a systemic autoimmune disease that occurs when your body’s immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart and lungs.
The signs and symptoms of lupus that you experience will depend on which body systems are affected by the disease. The most common signs and symptoms include:
Fatigue
Fever
Joint pain, stiffness and swelling
Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose or rashes elsewhere on the body
Skin lesions that appear or worsen with sun exposure (photosensitivity)
Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud’s phenomenon)
Shortness of breath
Chest pain
Dry eyes
Headaches, confusion and memory loss
3. Arthritis
Arthritis is the swelling and tenderness of one or more of your joints. The main symptoms of arthritis are joint pain and stiffness, which typically worsen with age. The most common types of arthritis are osteoarthritis and rheumatoid arthritis.
Osteoarthritis causes cartilage — the hard, slippery tissue that covers the ends of bones where they form a joint — to break down. Rheumatoid arthritis is a disease in which the immune system attacks the joints, beginning with the lining of joints.
Uric acid crystals, which form when there’s too much uric acid in your blood, can cause gout. Infections or underlying disease, such as psoriasis or lupus, can cause other types of arthritis.
The most common signs and symptoms of arthritis involve the joints. Depending on the type of arthritis you have, your signs and symptoms may include:
Pain
Stiffness
Swelling
Redness
Decreased range of motion
4. Complex Regional Pain Syndrome
Complex regional pain syndrome (CRPS) is a chronic (lasting greater than six months) pain condition that most often affects one limb (arm, leg, hand, or foot) usually after an injury. CRPS is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems.
The central nervous system is composed of the brain and spinal cord; the peripheral nervous system involves nerve signaling from the brain and spinal cord to the rest of the body. CRPS is characterized by prolonged or excessive pain and changes in skin color, temperature, and/or swelling in the affected area.
The key symptom is prolonged severe pain that may be constant. It has been described as “burning,” “pins and needles” sensation, or as if someone were squeezing the affected limb. The pain may spread to the entire arm or leg, even though the injury might have only involved a finger or toe. In rare cases, pain can sometimes even travel to the opposite extremity. There is often increased sensitivity in the affected area, known as allodynia, in which normal contact with the skin is experienced as very painful.
People with CRPS also experience changes in skin temperature, skin color, or swelling of the affected limb. This is due to abnormal microcirculation caused by damage to the nerves controlling blood flow and temperature. As a result, an affected arm or leg may feel warmer or cooler compared to the opposite limb. The skin on the affected limb may change color, becoming blotchy, blue, purple, pale, or red.
Other common features of CRPS include:
changes in skin texture on the affected area; it may appear shiny and thin
abnormal sweating pattern in the affected area or surrounding areas
changes in nail and hair growth patterns
stiffness in affected joints
problems coordinating muscle movement, with decreased ability to move the affected body part
abnormal movement in the affected limb, most often fixed abnormal posture (called dystonia) but also tremors in or jerking of the limb.
5. Depression
Depression is a mood disorder that causes a persistent feeling of sadness and loss of interest. Also called major depressive disorder or clinical depression, it affects how you feel, think and behave and can lead to a variety of emotional and physical problems. You may have trouble doing normal day-to-day activities, and sometimes you may feel as if life isn’t worth living.
More than just a bout of the blues, depression isn’t a weakness and you can’t simply “snap out” of it. Depression may require long-term treatment. But don’t get discouraged. Most people with depression feel better with medication, psychotherapy or both. Although depression may occur only once during your life, people typically have multiple episodes. During these episodes, symptoms occur most of the day, nearly every day and may include:
Feelings of sadness, tearfulness, emptiness or hopelessness
Angry outbursts, irritability or frustration, even over small matters
Loss of interest or pleasure in most or all normal activities, such as sex, hobbies or sports
Sleep disturbances, including insomnia or sleeping too much
Tiredness and lack of energy, so even small tasks take extra effort
Reduced appetite and weight loss or increased cravings for food and weight gain
Anxiety, agitation or restlessness
Slowed thinking, speaking or body movements
Feelings of worthlessness or guilt, fixating on past failures or self-blame
Trouble thinking, concentrating, making decisions and remembering things
Frequent or recurrent thoughts of death, suicidal thoughts, suicide attempts or suicide
Unexplained physical problems, such as back pain or headaches
6. Lymphoma
Lymphoma is cancer that begins in infection-fighting cells of the immune system, called lymphocytes. These cells are in the lymph nodes, spleen, thymus, bone marrow, and other parts of the body. When you have lymphoma, lymphocytes change and grow out of control.
There are two main types of lymphoma:
Non-Hodgkin: Most people with lymphoma have this type.
Hodgkin
Non-Hodgkin and Hodgkin lymphoma involve different types of lymphocyte cells. Every type of lymphoma grows at a different rate and responds differently to treatment.
Warning signs of lymphoma include:
Swollen glands (lymph nodes), often in the neck, armpit, or groin that are painless
Cough
Shortness of breath
Fever
Night sweats
Fatigue
Weight loss
Itching
7. Growing Pains
Growing pains are recurring pain symptoms that are relatively common in children ages 3 to 12. The pains normally appear at night and affect the calf or thigh muscles of both legs. The pain stops on its own before morning. Growing pains are one of the most common causes of recurring pain in children.
Growing pains usually cause an aching or throbbing feeling in the legs. This pain often occurs in the front of the thighs, the calves or behind the knees. Usually both legs hurt. Some children may also experience abdominal pain or headaches during episodes of growing pains. The pain doesn’t occur every day. It comes and goes.
Growing pains often strike in the late afternoon or early evening and disappear by morning. Sometimes the pain awakens a child in the middle of the night.
Consult your child’s doctor if you’re concerned about your child’s leg pain or the pain is:
Persistent
Still present in the morning
Severe enough to interfere with your child’s normal activities
Located in the joints
Associated with an injury
Accompanied by other signs or symptoms, such as swelling, redness, tenderness, fever, limping, rash, loss of appetite, weakness or fatigue
Conclusion
As you can see, there are several conditions that can mimic the symptoms of Fibromyalgia, which is why it’s important to see your doctor as soon as possible, to get the proper diagnosis. Don’t let pain linger…if something doesn’t seem right in your body, get it checked out. Remember,
I want to talk about a difficult subject today…Chronic Pain and Addictions. When you live with Chronic Pain, you can find yourself spiraling in a dark hole. Sometimes depression becomes as big of a problem as the physical pain you live with, and in a desperate need to feel better, you find yourself turning to your medications too often, or you resort to drinking or eating as a way of filling the gap.
Addiction is easy to fall into, as often, you are not receiving adequate treatment for your pain to begin with. You find yourself taking your medictions sooner than directed, or you take more than recommended and then suddenly, you’re in withdrawal at the end of the month when your prescription has run out.
Instead of abusing your pain medications, you may turn to alcohol to increase the “buzz”, or food may become the drug of your choice. “Anything to dampen the pain” is what you might be thinking, and sometimes, it works. Other times, it feels like nothing can fill the unending gulf of pain you live with and so your depression deepens and you’re left feeling worthless. Thoughts of suicide may plague you but you resist telling others for fear they will see you as weak.
Let’s examine this problems in more detail.
Medications
Opioid abuse is an epidemic in the United States. In 2016, approximately 11.5 million Americans 12 years and older misused opioid pain medications, and 1.8 million had a substance use disorder involving prescription pain medications. From 2000 to 2015, more than 500,000 persons died from opioid overdoses, with deaths generally increasing as prescription opioid sales increased. In 2012, clinicians wrote 259 million prescriptions for opioids, enough for every U.S. adult.*
There are a variety of medications that are used in the treatment of Chronic Pain. As you probably know, there is a current push from to cut back on Opioids like Oxycodone and Hydrocodone because of perceived over-prescribing and the number of deaths linked to the mis-use of Opioids. The number of deaths from illegal Fentynal overdoses has increased dramatically, yet the people who actually require the drug for their Chronic Pain are being turned away by their physicians or are having their dosages cut back significantly.
PreGabalin, Gabapentin, and mixed drugs like Tramacet (Tramadol and Acetaminophen) are now being used more frequently, but not always to great benefit. This is one of the reasons the use of illegal Fentynal is increasing – people aren’t getting adequate relief from their doctor-prescribed medications and so they’re looking to the streets for solutions.
Alcohol
Throughout the ages, people have used alcohol to manage their pain. A swig of whiskey after a bullet wound in the old Westerns, or to numb the pain of a teething baby are two minor examples. A study done recently showed that 28% of people with Chronic Pain used alcohol to help control their pain**
Although alcohol has been shown to reduce pain, it’s a temporary solution and has potential and possible fatal risks. When you drink, you are more likely to abuse your prescription medications, resulting in furthering the sedative effects of both. You also increase the possibility of liver damage or gastric bleeding. Using alcohol as a pain medication often ends up with exceeding the recommended amount that you should drink and overdose of alcohol and/or prescription medications can be fatal.
Other points to note:
Withdrawal from chronic alcohol use often increases pain sensitivity which could motivate some people to continue drinking or even increase their drinking to reverse withdrawal-related increases in pain.
Prolonged, excessive alcohol exposure generates a painful small fiber peripheral neuropathy, the most common neurologic complication associated with alcoholism.
Food
When a person is unable to control the amount of pain they live with, they may turn to food instead, as a way of finding relief. It doesn’t take away the pain, but satiating yourself gives back the illusion of that control that you’ve lost elsewhere. Anorexia and bingeing/purging become huge risks and lead to further medical problems.
Anorexia is the elimination of food from the diet, until your calorie intake is grossly under the recommended daily allowance for health. It is a psychological and potentially life-threatening eating disorder.
There are a multitude of health risks involved including mood swings, low blood pressure, heart problems, kidney and liver issues, loss of bone density and the very real possibility of death.
Bingeing and purging causes issues such as gastric problems, dental issues from vomiting and bile wearing at the teeth and gums, dehydration and depression issues. The use of excessive laxatives is hard on your bowels and runs the risk of chronic constipation, resulting in a Catch-22 of needing to use more laxatives to alleviate the constipation.
Excessive Exercise is another form of purging. By engaging in obscene amounts of exercise, you expose yourself to potential damage to your joints from overuse, dehydration, weakness and potential heart issues.
Other Addictions
Other addictions to be careful about including smoking, gambling, shopping and sex although I’m sure you can think of even more. Each of these excessive behaviours can lead to damaging consequences so it’s imporant to be aware of them. When you live with Chronic Pain, you can have an “all or nothing” mentality – you simply want to do anything that will help you focus on something other than hurting.
What Next?
The first step to any of these issues is to accept that you have a problem. Professional help is required to allow you to wean off of the drugs or alcohol, or to start a healthy relationship with food.
Support groups are available both in person and online and are highly recommended. To be with people who have gone through the same experiences as you have can be very comforting.
A Pain Management program may be suggested to help you get to the root of your problems, and to help you find solutions to managing your pain more effectively.
Talk to your family physician to start. Now is the time to be honest about what you’ve been going through and how you’ve been coping (or not coping). Accept that seeing a counsellor on a regular basis may be a requirement for your success. Having a safe place to talk goes a long way in setting goals for yourself and achieving them.
Ask about specific books that may help you understand Chronic Pain more completely. Knowledge is power.
Finally, realize that you are not a bad person. You may have made some bad choices, but recognizing them and changing them is what’s important. We all make mistakes, and even if you think you’re the worst person in the world…you’re not. You have value and worth and are deserving of the best care possible. Remember,
I am featuring another guest post from my friends at MadebyHemp.com. This article first appeared on their website.
2018 was the year we saw a strong surge of mental health awareness. The public’s focus on health broadened to also include taking care of one’s mental and emotional health. People have finally realized that one of the keys to maintaining a healthy body is to have a healthy mind.
Throughout 2019, mental health awareness will continue to be one of the bigger focuses on overall well being. Learning a few habits that will promote and improve your mental health will be a great start to your fabulous year.
1. Exercise
The secret to a sound body is a sound mind. But it could also work both ways. The secret to a sound mind is a sound body. It might not work for everybody, but for a majority of able-bodied people, a great way to boost endorphins is to go out and move. Find an exercise that you love. You don’t need to do what everyone else is doing. Some people prefer lifting weights, some like yoga, some even run marathons. Find that one exercise you want to stick with and run with it.
2. Gratefulness
Being thankful for the things you have instead of focusing on the things you don’t is a good way of bringing positive energy into your life. It will, more importantly, make you realize you are lucky to have the things you do. Practicing the habit of being grateful will help you become a more positive person.
3. Be kind
Be the person you wish other people would be to you. Make someone’s day by smiling at them, or helping them carry a heavy load, or even just opening the door for someone who has their hands full. A bit of kindness paid forward will cultivate a world of kindness. It doesn’t take much to make others smile.
4. Sleep
Get enough sleep. Sleep can do wonders for a tired mind and body. Don’t overdo it though. Get the right amount of sleep in order to feel rested and ready to tackle your day, every day. Put your screen away close to bedtime and concentrate on relaxing. Give your body and mind the time to recover and recuperate.
5. Hang out with friends
Socialize. Even the most introverted person has someone they prefer to hang around with. It does wonderful things to your soul to share your time with the people that matter.
6. Chocolate
Better yet, try Therapeutic Chocolate with Cannabidiol (CBD) oil. Cannabinoids are non-psychoactive and can reduce anxiety. If you are looking to incorporate CBD into your diet, but is not very much of a fan of its earthy taste, chocolate is the way to go. Cannabinoids are found to keep the body in neutral state, and support the functions of the brain, as well as the central and peripheral nervous system. Get your chocolate fix for the day, and get CBD’s benefits while you’re at it.
7. Laugh
When they said laughter is the best medicine, they were not kidding. Laughter helps ease stress and anxiety. Hang out with a funny friend, or watch a comedy show. Or maybe learn a few jokes and share them with your friends. Laughter is one of those things that multiply when shared.
8. Eat well
A few desserts won’t hurt you any but for the most part, feed your body the things it should be fed. Eat a healthy and balanced diet. This will ensure your body will feel healthy and will give you less things to stress or worry about. Avoid things that will harm your body like smoking or excessive drinking.
9. Love yourself
Tell yourself something nice every day. Most people are generous with giving away compliments to others but are stingy when it comes to themselves. Start your day by giving yourself a sincere compliment. It could be something simple like “oh my skin looks very nice today”. Or “I do make an amazing omelet.” And develop this into a daily habit. Because loving yourself will allow you to love others more freely.
10. Meditate
Give your mind a chance to empty itself out of the negative energy that is pervasive in the world. Give your mind the space to breathe and relax. And as you relax your mind, you relax your body. Meditation is a great way to connect your mind and your body into one plane. It is a good way to relax and to relieve yourself of any stress that you may have. Meditation also complements therapy.
What does the word meditation mean to you? When you hear it, what is the first thing you think of? Someone sitting with their legs crossed, going “ommmmm”? Someone doing yoga? A different culture or religion?
Mindfulness meditation can have many meanings, but ultimately, it’s a way of connecting with yourself. It’s a mental training practice that involves focusing your mind on your experiences (like your own emotions, thoughts, and sensations) in the present moment. Mindfulness meditation can involve breathing practice, mental imagery, awareness of body and mind, and muscle and body relaxation.
So what does mindfulness meditation have to do with Chronic Pain? Well, it’s a way of focusing on your body and using the relaxation techniques to reduce pain and tension. With the right amount of practice, you can utilize meditation to counteract against various types of pain including joint pain and nerve pain. Here are some tips and tricks to help you.
Getting Started
Learning mindfulness meditation is straightforward, however, a teacher or program can help you as you start (particularly if you’re doing it for health purposes). Some people do it for 10 minutes, but even a few minutes every day can make a difference. Here is a basic technique for you to get started, from the website Very Well Mind:
1. Find a quiet and comfortable place. Sit in a chair or on the floor with your head, neck, and back straight but not stiff.
2. Try to put aside all thoughts of the past and the future and stay in the present.
3. Become aware of your breath, focusing on the sensation of air moving in and out of your body as you breathe. Feel your belly rise and fall, and the air enter your nostrils and leave your mouth. Pay attention to the way each breath changes and is different.
4. Watch every thought come and go, whether it be a worry, fear, anxiety or hope. When thoughts come up in your mind, don’t ignore or suppress them but simply note them, remain calm and use your breathing as an anchor.
5. If you find yourself getting carried away in your thoughts, observe where your mind went off to, without judging, and simply return to your breathing. Remember not to be hard on yourself if this happens.
6. As the time comes to a close, sit for a minute or two, becoming aware of where you are. Get up gradually.
Learning how to breathe sounds so simple, but many of us don’t do it properly. We tend to breathe from the chest instead of the diaphragm, which leads to shallow breaths. Deep belly breathing is preferable and can be easily learned. Try breathing in tune with this Hoberman Sphere:
Guided Meditations
Guided meditations can be an excellent resource to help you connect the mind and body. The good people at Mindful.org have several excellent starters that you can access right here.
For content specific to Chronic Pain, these videos may be helpful for you:
Just a few minutes a day is all it takes to learn this simple practice, but the benefits can last for much longer. Used in conjunction with heat, ice and medications, you may find Mindfulness Meditation to be just the thing to ease your Chronic Pain, one breath at a time. Remember,
I’m pleased to feature this guest post by Kunal Patel, who works with a brand called Copper Clothing.
Fibromyalgia is a disorder characterized by musculoskeletal pain all over the body. It is often accompanied by fatigue, sleep andmood issues, and cognitive concerns like memory problems. There are several ways to cope with the disorder, from having the right diet to wearing the right clothes.
Here are 5 practical ways to cope with fibromyalgia.
Exercise Regularly
It may seem impossible to exercise when you have fibromyalgia but it is recommended you do. Exercising will help in relieving symptoms of fibromyalgia, especially with the stiffness and restless leg syndrome.
Light exercises and yoga also help in boosting the mood, reducing fatigue, easing the pain, improving blood circulation and improving sleep. You can go for a walk, do strength training, cycling, water aerobics, and swimming.
However, if you are too fatigued, avoid exercisingthat day.
Good Sleeping Habits
The pain and stress can hinder with your ability to sleep. However, sleep is essential to manage fatigue – the biggest symptom of the disorder.
Practice good sleep habits like:
Reduce the noises and intensity of lights in the bedroom
Adopt bedtime rituals like taking a soothing bath or journaling before bedtime
Proper Diet
Your fibromyalgia dietmust include lots of vegetables, fruits, dairy, whole grains, and lean meats. This will improve the overall health, lower weight and energize you. Eliminating sugar, foods containing food additives like MSG, and aspartame will be beneficial.
Wear the Right Clothes
Clothing choices can make a huge difference in managing daily pain and fatigue that comes with fibromyalgia. Those suffering from fibromyalgia suffer from a condition where even the slightest touch can be quite painful. Wearing loose-fitting, non-constricting and lightweight clothing is recommended.
Copper compression clothing is also used to treat fibromyalgia pain and stiffness.This disorder can affect any muscle in the body, however, it is most common in extremities like hands and fingers. Copper compression glovesprovide fibromyalgia hand pain relief due to their properties. They fight inflammation, retain warmth, improve blood flow and restore movement in the hand.
Choose cotton or copper socks as they don’t have chemicals, wick away sweat and fight odors. The latter also help in reducing pain in the legs and feet.
Stay Positive
Living with pain and overcoming fatigue is not easy and it can get exhausting. Your mind may play tricks on you and be stuck in a loop that you are not accomplishing anything. However, it will do you no good to ruminate on those things. It is essential that you stay positive.
Do not focus on the things that fibromyalgia is preventing you from doing as it will make you feel worse. It is alright to have a bad day– just focus on getting through each day and celebrate little victories.
Consult with your doctor about the best pain management techniques. Take one day at a time and this disorder can become a lot more bearable.
Author Bio –
Kunal Patel is a young and passionate entrepreneur, fascinated by the workings of the human body and natural solutions for common health problems. He’s single-minded in his aim to make Copper Defence a brand that’s recognized across the globe, by partnering with global brands to make these high-tech materials easily accessible for everyone.
Today I’m featuring an article by Guest Author Nicole Ross Rollender. Her bio is at the bottom of the page. She’s written an excellent post about Omega-3s and Omega-6s and how important they are for our bodies. When you live with Chronic Pain, you know you need to do everything possible to maintain your overall health, and diet can play a part in that. Read on to see what Nicole has to say:
No doubt you’ve gotten the skinny on good fats (hello, omega-3) from your primary care doctor or nutritionist.
You’ve probably heard this before: Omega-3 fatty acids like EPA (eicosapentaenoic acid) and DHA (docosahexaenoic acid) are found in fish oils from salmon, krill, tuna, trout, mackerel, and sardines, along with oysters and crabs.
Clinical evidence suggests omega-3s like EPA and DHA help reduce risk factors for heart disease, including high cholesterol and high blood pressure, according to the University of Maryland Medical Center.
You’ll find other omega-3s like alpha-linolenic acid (ALA) in flaxseed, oils like canola and soybean, and nuts and seeds such as walnuts and sunflower, according to the Mayo Clinic.
Along with omega-3s, omega-6 fatty acids play a vital role in brain function, and our normal growth and development.
Bottom line: Your body needs fatty acids to function, and they pack some major health benefits.
However, not as many people have heard of omega-6s. Here’s what you need to know to ensure you’re getting enough (but not too much) of this important fat in your diet.
What Are PUFAs?
Here’s a quick chemistry lesson: Like omega-3, omega-6 is a type of polyunsaturated fatty acid (PUFA), a fat molecule containing more than one unsaturated carbon bond. For example, oils (like olive oil) that contain polyunsaturated fats are liquid at room temperature, but start to turn solid when chilled, according to the American Heart Association.
“Omega-6s are essential for a whole host of things: proper brain function, stimulating hair and skin growth, maintaining bone health, promoting normal growth and development, regulating metabolism, and maintaining a healthy reproductive system,” says Laura Ligos, MBA, RDN, CSSD, a Real Food registered dietitian at Albany, NY-based The Sassy Dietitian & Designed to Fit Nutrition.
PUFAs offer heart-health benefits when you eat them in moderation and use them to replace unhealthy saturated and trans fats in your diet, according to the Mayo Clinic.
There are saturated fats in animal-based foods, such as meats, poultry, lard, egg yolks and whole-fat dairy products like butter and cheese. They’re also in cocoa butter, and coconut, palm and other tropical oils used in coffee creamers and other processed foods.
Trans fats, also called hydrogenated and vegetable oils, are in hardened vegetable fats like stick butter – and make their way into crackers, cookies, cakes, candies, snack foods and French fries.
A good rule of thumb is to reduce foods high in saturated and trans fats in your diet. Instead, choose foods that include plenty of PUFAs – but don’t go overboard.
All fats, even good ones, are high in calories – they’re nine calories per gram.
The Omega-6/Omega-3 Ratio
Humans evolved on a diet balanced in omega-6 and omega-3 (1:1 ratio) essential fatty acids, according to the journal Nutrients. Today, though, the ratio for many people is a staggering 20:1, contributing to weight gain and other health issues.
“The ratio between omega-6 and omega-3 in our bodies should stay between 2:1 and 3:1,” Ligos says. “You’re heading into dangerous territory when your omega-6/omega-3 ratio is greater than 4:1.”
Both a high omega-6/omega-3 ratio and a high omega-6 fatty acid intake contribute to weight gain, whereas a high omega-3 fatty acid intake decreases your risk for weight gain, according to Nutrients.
“When there isn’t enough omega-6 in your diet, essential fatty acid deficiency can occur, leading to excessive thirst and skin lesions, as well as more serious issues like stunted growth, skin lesions, a fatty liver, and reproductive issues or failure,” Ligos says.
Conversely, too much omega-6 (and not enough omega-3) can cause inflammatory conditions including heart disease, elevated blood pressure, diabetic neuropathy, autoimmune conditions and more, Ligos notes.
Linolenic acid, often found in vegetable oils, is converted to gamma-linolenic acid (GLA) in the body. GLA is also found in plant-based oils like evening primrose oil, borage oil and black currant seed oil.
“There’s research to support taking a GLA supplement, an omega-6 fatty acid, to reduce inflammation, much unlike all other omega-6 fatty acids,” Ligos says.
The body converts GLA to DGLA, which fights inflammatory conditions, and having enough other nutrients like magnesium, zinc, and vitamins C, B3 and B6, promotes that conversion, the University of Maryland Medical Center says.
Where to Get Your Omega-6
The good news is most of us can get the right amount of omega-6 from a healthy diet alone.
“Omega-6 fatty acids are found primarily in vegetable and plant oils, including safflower, sunflower, grapeseed, corn, cottonseed, peanut, sesame, soybean and canola,” Ligos says.
At one time, researchers believed omega-6 fatty acids metabolized in the body to then inflame and damage artery linings, which could lead to heart disease.
After reviewing the findings, the American Heart Association recommended people eat between 5% and 10% of their daily calories from omega-6 fatty acids.
It’s a good idea to replace saturated fats from foods like meat, butter, cheese and deserts with plant-based foods containing omega-6 fatty acids, including vegetables oils, nuts and seeds is a good first step.
Flaxseed and hempseed oil, nuts, borage oil, evening primrose oil and black currant seed oil, and acai are other healthy sources of omega-6.
About The Author:
Nicole Rollender is a South New Jersey-based editor and writer. Her work has appeared in Good Housekeeping, Dr. Oz The Good Life, Woman’s Day and Cosmopolitan. She’s the author of the poetry collection Louder Than Everything You Love. Recently, she was named a Rising Star in FOLIO’s Top Women in Media awards and is a 2017 recipient of a New Jersey Council on the Arts poetry fellowship. Visit her online at www.strandwritingservices.com; on Facebook or Twitter.
When I first started to blog, I wrote about my total hip replacement because I’d had problems trying to find first-person accounts of undergoing that particular type of surgery, especially for someone who was in their 50’s. Hip replacements seem to be done on mostly older folks (in their 70’s or older) but rarely on the younger set, unless you’ve been born with a hip problem or have suffered a devastating injury.
Because I was only 54 when I had my hip replacement done, I was considered “unusual” by my surgeon (and yes, I’m sure he meant my hip only and not me in general!) so trying to find others in the same position was difficult. I had read enough websites to understand the technical side of the surgery, but I wanted to find out what it was like to actually have the surgery and then recuperate and go on with life.
Since I was unable to find a lot of good information, I decided to write about my own experiences, so others in my position might be able to find what I was looking for. Once I’d written about that, it seemed natural to go on and talk about other health issues I live with and how they impact my life. From there, the blog site grew organically and became what it is now – a place for articles and posts about Fibromyalgia, Chronic Pain, Chronic Fatigue and Invisible Illnesses, such as Lupus, MS, Arthritis, POTs, Ehler’s Danlos Syndrome and more.
The goal has been achieved and I’m proud of what I’ve been able to create with this site. I hope others feel the same.
Compassion
Living with a Chronic Illness is hard work. People with Chronic Pain and Invisible Illness are often left feeling isolated, and when you find someone online who speaks your language, it can be like finding an oasis in the desert.
In addition to educating people, I wanted this blog site to be a place where comments could be left freely, allowing people the opportunity to share what’s going on in their lives in a safe way. When readers have identified with a particular post, their comments reflect their own lives and situations and I take that seriously. I often respond back, not always in the comment section, but in-person to what they’ve said.
My responsibility as a writer is to ensure that not only am I educating people but I’m giving them some hope as well. Life with Chronic Illness is painful physically and mentally and when you find a spot online that reflects your own thoughts and ideas and connects with you, there’s a genuine freeing sensation. You feel less alone in the world and you realize that other people “get it”. Being understood is an amazing feeling and us Chronic Pain Warriors don’t always feel understood.
In many ways, I see writing this blog as another form of volunteering that I do. My focus on health and wellbeing extends beyond this blog site, but I consider the site to be one of service to others.
Like my other volunteer roles, I receive no compensation for producing this site, with the exception of any money I might make with Affiliate Marketing (more about that in a minute). I do this purely because I want to help others who are in Chronic Pain and who feel lost and alone and in need of information that might help make their lives better.
My other volunteer roles include committee work for Surgical Quality Improvement, improving Clinical Resources for Patients such as updating Patient Information Sheets received when you are discharged from an ER and Laboratory Quality Control to ensure that Patients are receiving the best care possible when they are providing lab samples for doctor-ordered tests. I also sit on a Provincial Measurement Working Group that is creating a survey for Patients in British Columbia, Canada to ensure that their care received has been the best it can be.
These roles, together with this blog, give me ample ways to help others, and that brings a lot of happiness to my soul.
My final reason for blogging is purely selfish…I do this for me as well. It’s therapeutic to be able to write about what’s new in health care, or what I’ve been thinking about a certain subject. I love being able to tackle controversial subjects or bring emotional issues to light, such as intimacy when you are Chronically Ill.
I consider myself lucky to be in a position where I can have some influence over others and perhaps introduce them to a treatment they haven’t heard of before. There’s nothing quite as satisfying as hearing back from someone who says “you changed my life” or “I really needed to read this”. It makes up for the research, the typing on days when my hands hurt and the work of coming up with new topics that will be of interest.
If you are a blogger, you understand what I’m talking about. If you are a reader, just let me say that having responsibility for you and what I’m producing for you is an honour I don’t take lightly. I want to make sure you’re getting information that benefits you and your health because I know what it’s like to live with Chronic Illness and I know the types of things that I’d like to read and learn from.
Thank you for allowing me to share these thoughts with you. I appreciate your comments below, or you can always write to me using the Contact Form.
I do this because I love it. I love sharing and helping others and I hope I’m able to continue for a long time to come. Remember…
When you live with Chronic Pain, you often find yourself juggling various mood swings. It’s hard to stay positive when you’re in pain all the time, so here are some quotes to help you stay on track or to turn to when you need to be uplifted.
1. “Keep your face to the sunshine and you cannot see a shadow.”
— Helen Keller
2. “Once you replace negative thoughts with positive ones, you’ll start having positive results.”
— Willie Nelson
3. “Yesterday is not ours to recover, but tomorrow is ours to win or lose.”
— Lyndon B. Johnson
4. “In order to carry a positive action we must develop here a positive vision.”
— Dalai Lama
5. “I always like to look on the optimistic side of life, but I am realistic enough to know that life is a complex matter.”
— Walt Disney
6. “Positive thinking will let you do everything better than negative thinking will.”
— Zig Ziglar
7. “Pessimism leads to weakness, optimism to power.”
— William James
8. “You can’t make positive choices for the rest of your life without an environment that makes those choices easy, natural, and enjoyable.”
— Deepak Chopra
9. “The thing that lies at the foundation of positive change, the way I see it, is service to a fellow human being.”
— Lee lacocca
10. “Positive thinking is more than just a tagline. It changes the way we behave. And I firmly believe that when I am positive, it not only makes me better, but it also makes those around me better.”
— Harvey Mackay
11. “In every day, there are 1,440 minutes. That means we have 1,440 daily opportunities to make a positive impact.”
— Les Brown
12. “I’m a very positive thinker, and I think that is what helps me the most in difficult moments.”
— Roger Federer
13. “Perpetual optimism is a force multiplier.”
— Colin Powell
14. “Attitude is a little thing that makes a big difference.”
— Winston Churchill
15. “Let us rise up and be thankful, for if we didn’t learn a lot today, at least we learned a little, and if we didn’t learn a little, at least we didn’t get sick, and if we got sick, at least we didn’t die; so let us all be thankful.”
“Think before you speak. Read before you think.”
― Fran Lebowitz, The Fran Lebowitz Reader
“Keep your face always toward the sunshine – and shadows will fall behind you.”
― Walt Whitman
“Write it on your heart that every day is the best day in the year.”
― Ralph Waldo Emerson
“Do not pray for an easy life, pray for the strength to endure a difficult one”
― Bruce Lee
“Even though you may want to move forward in your life, you may have one foot on the brakes. In order to be free, we must learn how to let go. Release the hurt. Release the fear. Refuse to entertain your old pain. The energy it takes to hang onto the past is holding you back from a new life. What is it you would let go of today?”
― Mary Manin Morrissey
“To handle yourself, use your head; to handle others, use your heart.”
― Eleanor Roosevelt
“Everything in moderation, including moderation.”
― Oscar Wilde
“Go placidly amid the noise and the haste, and remember what peace there may be in silence. As far as possible without surrender, be on good terms with all persons. Speak your truth quietly and clearly, and listen to others, even the dull and ignorant; they too have their story. Be yourself. Especially do not feign affection. Neither be cynical about love – for in the face of all aridity and disenchantment it is perennial as the grass. Take kindly the counsel of the years, gracefully surrendering the things of youth. Nurture strength of spirit to shield you from misfortune. But do not distress yourself with imaginings. Many fears are born of fatigue and loneliness. Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be, and whatever your labours and aspirations, in the noisy confusion of life keep peace with your soul. With all its sham, drudgery and broken dreams, it is still a beautiful world.”
― Max Ehrmann, Desiderata: A Poem for a Way of Life
“Be more concerned with your character than your reputation, because your character is what you really are, while your reputation is merely what others think you are.”
― John Wooden
“Dream as if you will live forever; Live as if you will die today.”
― James Dean
“Do all the good you can,
By all the means you can,
In all the ways you can,
In all the places you can,
At all the times you can,
To all the people you can,
As long as ever you can.”
― John Wesley
“Always acknowledge a fault. This will throw those in authority off their guard and give you an opportunity to commit more.”
― Mark Twain
“The way to happiness: Keep your heart free from hate, your mind from worry. Live simply, expect little, give much. Scatter sunshine, forget self, think of others. Try this for a week and you will be surprised.”
― Norman Vincent Peale, The Power of Positive Thinking
“The past is behind, learn from it. The future is ahead, prepare for it. The present is here, live it.”
― Thomas S. Monson
“Run mad as often as you choose, but do not faint!”
― Jane Austen, Love and Friendship
“Sit in a room and read–and read and read. And read the right books by the right people. Your mind is brought onto that level, and you have a nice, mild, slow-burning rapture all the time.”
― Joseph Campbell, The Power of Myth
“Be grateful, be smart, be clean, be true, be humble, be prayerful.”
“Never tell your problems to anyone…20% don’t care and the other 80% are glad you have them.”
― Lou Holtz
“Don’t count the days, make the days count.”
― Muhammad Ali
“Live simply, love generously, care deeply, speak kindly, leave the rest to God.”
― Ronald Reagan
“May I share with you a formula that in my judgment will help you and help me to journey well through mortality… First, fill your mind with truth; second, fill your life with service; and third, fill your heart with love.”
― Thomas S. Monson
“Meditate.
Live purely. Be quiet.
Do your work with mastery.
Like the moon, come out
from behind the clouds!
Shine”
― Siddhārtha Gautama
“In dwelling, live close to the ground. In thinking, keep to the simple. In conflict, be fair and generous. In governing, don’t try to control. In work, do what you enjoy. In family life, be completely present.”
― Lao Tzu
“Being yourself is all it takes. If you want to impress someone don’t be someone else just be yourself.”
― Selena Gomez
“The most important thing to do if you find yourself in a hole is to stop digging.”
― Warren Buffett
“Never lie in bed at night asking yourself questions you can’t answer.”
― Charles M. Schulz
“Before you speak, listen.
Before you write, think.
Before you spend, earn.
Before you invest, investigate.
Before you criticize, wait.
Before you pray, forgive.
Before you quit, try.
Before you retire, save.
Before you die, give.”
― William Arthur Ward
“Think in the morning. Act in the noon. Eat in the evening. Sleep in the night.”
― William Blake, The Marriage of Heaven and Hell
“Breathe properly. Stay curious. And eat your beets.”
― Tom Robbins, Jitterbug Perfume
“It is foolish to tear one’s hair in grief, as though sorrow would be made less by baldness.”
― Marcus Tullius Cicero
Forestier’s Disease is a rare form of degenerative arthritis. More commonly known as diffuse idiopathic skeletal hyperostosis (DISH), this disease attacks the ligaments of the body and turns them to bone.
