Dental Care and Chronic Illness

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

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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!

Dental Care and Chronic Pain

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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. 

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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.

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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…

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Domestic Violence – It Affects So Many

****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…

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10 Symptoms You May Experience with Fibromyalgia

Previously posted on The Zebra Pit

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.

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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.

Fibromyalgia is hard to explain

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…

Season of Miracles

Thoughts

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…

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There Is Always Hope

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.

there is always hope

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.

  1. You gain a better perspective of your own strengths
  2. You show more compassion for others who are struggling
  3. You understand the human condition for what it is and tend to reach out more to others
  4. Every accomplishment is a victory
  5. 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.

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Image by Daniel Reche from Pixabay

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?

  1. 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.
  2. 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
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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. 
  10. 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.
    • Get 7-9 hours of sleep per night. Use good sleep hygiene if you have trouble sleeping.
    • 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.
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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…

There Is Always Hope

chronic pain and addictions (1)

Interview October – Elisa Austin

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 am more supportive of others

One final thing I want people to know is: 

I refuse to give up.

Interview October – Shantay Marsh Thompson

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.

My Links

https://www.facebook.com/Health-Wellness-108684490547162/?view_public_for=108684490547162

Interview October – Jennifer Van Haitsma

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. 

My links are:

Blog: www.diffusingthetension.com

Twitter: www.twitter.com/jvan3610

Facebook: www.facebook.com/diffusingthetension

Instagram: www.instagram.com/diffusing_the_tension

Pinterest: www.pinterest.com/diffusingthetensionblog

Interview October – Jamie Pirtle

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. 

My links are: 

Healthywithjamie.com

https://m.facebook.com/healthywithjamie/

https://www.instagram.com/healthywithjamie1/

https://www.facebook.com/groups/2109386845847472/?ref=share

https://www.linkedin.com/in/jamiehyatt1

Free recipe book with 23 gluten free and Keto friendly healthy recipes: 

https://healthywithjamie.com/free-recipe-book/#

Interview October – Jenny Jones

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 links are:

www.LifesaPolyp.BlogSpot.com

www.Youtube.com/LifesaPolyp

www.cafepress.com/lifesapolyp

www.facebook.com/lifesapolyp

www.twitter.com/lifesapolyp

www.instagram.com/lifesapolyp

www.pinterest.com/lifesapolyp