Managing My Mental Illness

I have Bipolar Disorder and have talked about it before on my blog. It’s not something I hide but I don’t really discuss it much either so I thought I’d share a bit more about what it looks like for me.

Although currently stable on medication, when I was unmedicated and undiagnosed, I would have the most incredible highs and lows. My manic highs would see me racing around the house, cleaning whatever I could, and cooking dinners every night and baking and crafting and never, ever sleeping…I would be up for days on end without any sleep at all. At my worst, I was awake for 8 days in a row – and I mean without a drop of sleep. I was unbeatable…I would shop online without realizing what I was doing, and then all of a sudden, these packages would start arriving and I would have no clue what was in them – usually jewellery (cheap stuff) or clothing from Zulily (an online store I love).

woman-shopping-online-sample-sale

On the other hand, when the inevitable crash came, I would crash hard. All I wanted to do was curl in the fetal position in bed and sleep…so that’s all I did. I didn’t bathe, I didn’t eat, chores went by the wayside, forget about cooking and crafting. I did the bare minimum to keep my cat alive and my husband had to fend for himself after a 12 hour day at work when it came to eating, plus do the dishes. I rarely left the bedroom, unless it was to spend mindless hours on the computer doing nothing.

Once we realized how serious the problem was, my husband and I realized it was critical that I needed to be on medication. I saw my doctor and was started on Seroquel. After that drug stopped working, I’ve been taking Abilify, which has been excellent for me in terms of managing my symptoms. Unfortunately, the side effects have been harsh and I’ve been paying the price.  I am not a vain woman, but I’ve put on 20lbs since using the medication (in 6 months) and it’s 20lbs I can’t afford to carry on my 5’2″ frame. I have no ability to exercise and lose the weight, especially now that I’m wearing an Air Cast on my left ankle to try to help reattach a tendon that has torn away from the bone. Plus I take other medications that all have their own side effects…so I have to be careful with those as well.

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I’ve also experienced some other unpleasant side effects including severe brain zaps, and I’ve been seeing shadows on the sides of my vision. These were enough to send me back to my Psychiatrist to discuss making another medication change – the dance that you tango when you have a mental illness. He’s decided to try me on one of the older drugs that is less likely to cause weight gain like so many of the newer ones do. It’s called Zeldox (my family doctor says it sounds like a cartoon character and I agree!) and the side effects listed are as follows:

  • constipation
  • cough
  • diarrhea
  • dizziness
  • fatigue
  • flu-like symptoms (e.g., fever, sore throat, chills)
  • leakage of fluid or milk from breasts (women)
  • menstrual changes
  • nausea or upset stomach
  • rash
  • restlessness
  • runny nose
  • sexual difficulties
  • vomiting

In general, most of these are mild and go away in the first couple of weeks of taking the medication, so I’m not too concerned. I’m just hoping that the brain zaps disappear as this is one of the most unpleasant of all the side effects that I experience. What is a brain zap you ask?

Brain zap or brain shiver is a term used to describe the sensation of a sudden jolt or buzz in the brain. It is also compared to the electrical shock, has no apparent cause and is brief in duration. In most cases, it’s relatively mild but people have reported the occurrences of very extreme and painful jolts. They are a temporary occurrence. Brain zaps can sometimes be accompanied by dizziness, tinnitus, mild pain and ache and a general sense of discomfort.

I experience mine as a buzz that goes across my head from ear to ear. I can hear the loud buzzing sound as well as feel it, but there isn’t any pain. It’s almost like the hum of an electric razor, but very quick and sudden. Sometimes it’s just one zap, sometimes it’s a series of them. They’re mostly just annoying more than anything but a side effect I can do without due to their frequency.  The shadowing I’ve been getting in my vision is more worrisome as I tend to freak out about anything to do with my eyes. I have no eye problems (other than wearing glasses) and I’d like to keep at least one body part in good shape for as long as possible if you know what I mean!!

I start the new medication on Monday, Dec. 17th but am writing this post to be read in February so I’ll add an update underneath so you know how it’s going.

Bipolar Disorder can be tricky to manage but with the right care, the proper medications and taking them at the right times, it can lead to a normal life. I’ve found the perfect balance between mania and depression. Now I’m able to function most days with the cooking and cleaning when my other health issues allow it and my poor husband can come home to dinner waiting most of the time. I feel more likely to work on a craft than when I was in a depressive crash, and while my sleep still isn’t the greatest, I’m not staying awake for days on end either.

Sometimes called Manic Depression, Bipolar Disorder causes extreme shifts in mood. People who have it may spend weeks feeling like they’re on top of the world before plunging into a deep depression. The length of each high and low varies greatly from person to person. If you are experiencing these symptoms, please see your doctor. There is help available and beyond that…

There is always hope!

Fibromyalgia and Loneliness

Having a chronic illness like Fibromyalgia can be a very isolating experience. Many of us used to work and found a lot of our social life revolved around our jobs, whether it was getting together with the gang after work for drinks or volunteering with a workgroup for a community project. Often, a best friend was made at our jobs whom we would hang out with more frequently, and those sorts of friendships became treasured relationships to us.

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After you become chronically ill though, you often have to give up working, and those relationships no longer exist, not even with the “best friend” that you made. How do you handle the loneliness that comes from that? We tend to not go out a lot in the first place, because of pain and fatigue, so without a reason to get together with former co-workers, there’s now more reason to isolate ourselves than ever. It’s depressing to know that you’re no longer “part of the gang”  and that you don’t fit in anymore. It’s even more depressing to know that your former friends don’t even realize that they’ve shut you out. It’s just the natural progression of you no longer being at the job, and nothing personal.

Reaching Out

But what happens when you try to reach out, to make plans, and people don’t return calls? Or when people reach out to you, but you’re unable to go, because their plans are too ambitious for you? I’d love to see people for coffee, but they always want to combine it with shopping followed by dinner and drinks afterwards, and that’s too much of a day for me. Lunch and shopping, I can do that on a good day, but then I want to go home. And if it’s a bad day, then I have to say no right from the start. And what happens if I start having too many bad days when friends want to get together? They stop calling, period. I am “too sick all the time” and no longer any fun to be with.  It’s easy to get depressed when this happens.

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It’s so frustrating when friends give up on you. I can’t control my good and bad days. I have no idea when a good day is going to go bad. I can feel great in the morning and then start to go downhill by the early afternoon. I try to explain that to people, but they don’t always understand how unpredictable Fibromyalgia can be. Sometimes it can change from hour to hour and even minute by minute. It’s like going outside in changing weather and never being sure of how many layers you should wear. Will you be too hot, too cold or just right? And what do you do with all those layers if you don’t need them?

There’s also the other side of the coin though. What if your friends continue to invite you out, but you keep turning them down? Your reasons seem valid; you’re in pain, it’s too much of a hassle, the weather is too difficult, you’re tired, or you just don’t feel like it. It’s easy to make excuses, but you also need to search the real reasons for saying no. Are the reasons you’re giving valid? Or are you turning down invitations because of depression?

Signs to Watch Out For

How do you know if you’re becoming depressed or socially isolated? Here are some signs to watch for:

  • Being less motivated to leave your home
  • Feeling more anxious or worried when leaving the house
  • Declining invitations from friends or family to meet or attend gatherings
  • Planning fewer social opportunities for yourself
  • Ignoring supports when they reach out to you
  • Seeing only negatives associated with social connections

If you recognize any of these symptoms, please see a doctor in order to be treated appropriately. If you want to be more socially active, but find your friends are not as available as they’ve been in the past, the following suggestions might be helpful for you:

  • Volunteer with like-minded people
  • Help out in an animal shelter
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  • Take up a new hobby
  • Join a support group (in person or online)
  • Join a Social Group in your City (look on Craigslist)
  • Keep a journal – it can help put things in perspective

Loneliness can be hard to deal with, but with the right understanding and support, you can overcome it. Make sure you’re staying in touch with people and not isolating yourself, and reach out to others if your friends have stopped reaching out to you. It’s okay to move forward and make new friends. Listen to your body and do what’s right for you. If you’re feeling up to it, go out and make new friendships through volunteer work or so social groups. If you need to take a break from socializing, that’s fine. Just don’t fade into the woodwork. Remember, your presence is valued no matter how much of it you are able to give at any time. You are loved. And as I always say…

There Is Always Hope!

 

 

Chronic Illness and Anxiety

When you’ve been diagnosed with a chronic illness, you may feel as if you’ve lost control over your future. The stress of learning to deal with doctors and specialists, coping with physical changes, and managing daily life can often lead to excessive worry or stress. Researchers have found that experiencing a chronic illness puts a person at increased risk for developing anxiety or an anxiety disorder. Roughly 40% of people with cancer report experiencing psychological distress that often takes the shape of excessive worry or panic attacks.* People with ongoing, or chronic pain are three times more likely to develop symptoms of anxiety.**

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The daily demands of living with a chronic illness continues to present challenges and generate anxiety long after the diagnosis has been given. Loss of mobility or other abilities can lead to worry about employment or financial concerns. Depending on others, worrying about becoming a burden or even intimacy with your partner may also be concerns. Some people are more easily able to adapt to the changes in their lives. Others may feel overwhelmed with anxiety and struggle to cope. Still others may be in limbo, unable to make decisions about their future.

The Most Common Anxiety Disorders are:

1. Generalized Anxiety Disorder (GAD) involves excessive and uncontrollable worry about everyday things, such as health, money or work. It is accompanied by physical symptoms such as restlessness, irritability, muscle tension, fatigue and difficulty sleeping or concentrating.
2. Obsessive-Compulsive Disorder (OCD) entails persistent, recurring thoughts (obsessions) that reflect exaggerated anxiety or fears. Someone with OCD often will practice repetitive behaviors or rituals (compulsions). For instance, obsessing about germs may lead someone with OCD to compulsively washing hands—perhaps 50 times or more per day.
3. Panic Disorder includes severe attacks of terror or sudden rushes of intense anxiety and discomfort. Symptoms can mimic those found in heart disease, respiratory problems or thyroid problems, and individuals often fear they are dying, having a heart attack or about to faint. The symptoms experienced during a panic attack are real and overwhelming, but not life threatening.
4. Posttraumatic Stress Disorder (PTSD) can follow exposure to a traumatic event, such as a car accident, rape, a terrorist attack or other violence. Symptoms include reliving the traumatic event, avoidance, detachment or difficulty sleeping and concentrating. Though it is commonly associated with veterans, any traumatic event can trigger PTSD.
5. Social Anxiety Disorder (SAD) is characterized by extreme anxiety about being judged by others or behaving in a way that might cause embarrassment or ridicule. People who have SAD have what feels like exaggerated stage fright all the time. SAD is also called social phobia.

Specific phobias are intense fear reactions that lead a person to avoid specific objects, places or situations, such as flying, heights or highway driving. The level of fear is excessive and unreasonable. Although the person with a phobia recognizes the fear as being irrational, even simply thinking about it can cause extreme anxiety. I personally am terrified of the Dentist, even though they treat me gently and with compassion. I have to take medication to help relax me in order to go for a simple cleaning.

Fortunately, anxiety is treatable with therapy, medication and complementary and alternative treatments (i.e. acupuncture, massage therapy, ). But when the focus is on the chronic illness, anxiety is often overlooked. That’s why it’s important to talk to your doctor about your emotional and cognitive health, and to speak up when you experience signs of anxiety.

Emotional symptoms of anxiety include:

  • Becoming easily agitated, frustrated, and moody
  • Feeling overwhelmed, like you are losing control or need to take control
  • Having difficulty relaxing and quieting your mind
  • Feeling bad about yourself (low self-esteem), lonely, worthless, and depressed
  • Avoiding others

Physical symptoms of anxiety include:

  • Low energy
  • Headaches
  • Upset stomach, including diarrhea, constipation, and nausea
  • Aches, pains, and tense muscles
  • Chest pain and rapid heartbeat
  • Insomnia
  • Frequent colds and infections
  • Loss of sexual desire and/or ability
  • Nervousness and shaking, ringing in the ear, cold or sweaty hands and feet
  • Dry mouth and difficulty swallowing
  • Clenched jaw and grinding teeth

Cognitive symptoms of stress include:

  • Constant worrying
  • Racing thoughts
  • Forgetfulness and disorganization
  • Inability to focus
  • Poor judgment
  • Being pessimistic or seeing only the negative side

 

What You Can Do

Challenge negative thinking. When you’re anxious, your brain may jump to conclusions, assume the worst, or exaggerate. Catastrophizing and ignoring the positives in your life may occur when you live with the challenges of a chronic illness. One way to manage anxiety is by being aware of the negative thinking, examining it and challenge the irrational thoughts. Counselors/therapists can play an important role in teaching you this important coping skill.

Calm your mind. Relaxation techniques can be an effective way to calm anxious thinking and direct your mind to a more positive place. Consider whether mindfulness meditation, yoga, or other breathing and focusing practices can still your body. Taking  time to relax, increases your ability to think objectively and positively when it comes to making choices about your health and life.

Find a good Doctor. If you take medication for both mental and for physical health, it’s important to that your doctors are aware of all your medications. Some medications may actually escalate anxiety, so it’s essential to work with a prescriber who can make informed choices that address both conditions without worsening either.

Find a support group. Managing a chronic illness can be a lonely job as it may be difficult for loved ones to understand the unique challenges. Support groups, whether online or in person are wonderful for creating community but also for providing information that can help reduce worry. They can also connect you to valuable resources for treating your illness.

Acknowledge successes. Anxious thinking about chronic illness can keep you from feeling that you have control over anything in life. It’s important to acknowledge all successes, both big and small. Keep track of the healthy things you do for your mind and body. Exercising, going to counseling, spending time with a friend–these can all help. Keeping these successes at the front of your mind can help you combat worry. They can remind you that you do have the power to affect your present and future.

If you think that you might have anxiety in addition to chronic illness, be honest with your doctor. Ask for help. Anxiety is highly treatable, so remember…

There Is Always Hope

*https://adaa.org/serious-chronic-or-terminal-illnesses
**http://www.health.harvard.edu/mind-and-mood/depression_and_pain

Invisible Illness – But You Look Fine!

One of the hardest parts of living with an Invisible Illness such as Fibromyalgia, MS, Ehlers Danlos, etc. is that you quite often look just fine on the outside, while your insides are screaming in pain. This leads many people to wonder if you truly are ill, or how serious your illness actually is. How do you handle this, as a Person with Chronic Pain (PwCP)?Screen Shot 2018-12-10 at 10.56.48 AM

For one thing, you should never have to make excuses for your pain to anyone. What you feel is what you feel, and there is never a reason to justify it or prove it, not even to your doctors. For years, people with Fibromyalgia went undiagnosed or misdiagnosed because Pain was often the only symptom a patient could describe. There are no other outward symptoms and nothing comes back in the blood tests or x-rays that a doctor might order. It’s only through using the 18 Tender Points and determining how many of them you have that a definitive diagnosis can be made for Fibro.

Other diseases often come with outward symptoms – the “butterfly rash” of lupus, the enlarged joints of Rheumatoid Arthritis, the dislocating joints of Ehler Danlos, the varying symptoms of MS – all of them a visual reminder that there is something wrong with a person. Fibro doesn’t present itself that way, and so a person can often look “normal” like everyone else, yet be in a flare up.

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So how do you handle it when the people who are closest to you don’t believe you are ill or doubt the severity of your illness. The first step is to educate them on what Fibromyalgia is: a disorder characterized by widespread pain, which causes many symptoms like extreme fatigue, sleep issues, memory loss and mood issues. It is essentially a very painful, exhausting disease, for which there is no cure and few treatments.” It is becoming much more recognized in the Medical field, unlike in the past, and is well accepted as a legitimate condition, just like arthritis, Lupus, MS, etc.

Basically, your brain miscommunicates with the nerves in the spinal cord and sends out the wrong messages to your body, resulting in an overload of symptoms. This graphic may be helpful in showing you just some of what you can experience:

FibroSymptoms2

And this is the reason it’s such a hard disease to diagnose because these symptoms are often looked at just on their own, and not seen as part of the bigger picture. It’s no wonder people look at us and think we’re crazy. To have all these symptoms and yet still look perfectly normal on the outside…well, I’d wonder too perhaps. That’s where the education comes in. The more we teach people about Fibromyalgia and how it mimics so many other diseases, the more people will realize just how huge a burden we are carrying every day.

Nobody wants to be told they look awful though, so how do you break this Catch-22? You want people to see you as you really are, but you don’t necessarily want to look ill at the same time. Are you obligated to dress up and put on makeup everytime you go out, just to look “good” for strangers? Of course not, but I am advocating that you do it for yourself if you’re able. Run a brush through your hair, throw some lipstick on, go for a trendier haircut or a manicure. Never do it for someone else though and never let a stranger’s comments get to you. Only you know how you’re feeling at any point and sometimes it’s just not possible to do these sorts of things. Pain may get in the way, or finances or depression…in these times, just do the best you can with what you have in the way of energy and time and desire.

Remember…you are perfect just the way you are…everything else you do is a bonus.

Education of others is key, and I truly believe that the more we can share about Fibromyalgia and other Invisible Illnesses with them, the more they will understand what we are going through, and the more compassionate they will become. Perhaps then they will stop commenting on how “fine” we look, and will start seeing us in a true light. Maybe they will see our struggles, our problems, our symptoms and what we have to go through on a daily basis just to survive and finally understand how difficult our lives truly are. Then and only then will come the appreciation and admiration we’ve been waiting for.

There is always hope.

 

Fibromyalgia – In Tune With Our Bodies

I’ve been thinking lately of how lucky I am that despite the fact I live with Chronic Pain, Chronic Fatigue Syndrome, Fibromyalgia and Invisible Illnesses, I’m actually quite healthy. I know that sounds like an oxymoron, but I rarely come down with colds, I can’t remember the last time I had a flu or stomach bug or even when I could say I was “sick”. I try to remember to get a flu shot each year because I’m Diabetic, but it didn’t happen last year and so far this year, I haven’t made it to a clinic either. It’s also in my best interest to get one, because since having surgery for severe Gastric Reflux Disease in 2004, I am unable to physically vomit – if I get sick where vomiting becomes an issue, I have to go to the hospital and have a nasal gastric tube placed to remove my stomach contents. Not fun!!

As the old saying goes, aging ain’t for sissies! When you live with Fibromyalgia, you live with all sorts of “side effects”. This diagram displays some of the many “extras” a Fibromite can expect to experience:

FibroSymptomsDiagram

These are all common symptoms and it can be difficult to tell them apart from other illnesses, which makes it extremely important to be aware of your body and to note when something feels “off” or different than what is normal for you. We are generally quite in tune with our own bodies and are quickly able to determine when a new symptom appears that doesn’t fit in with our usual symptoms.

What happens though when you do experience something that you’re unsure of? Your first step should always be to see your Primary Health Care Provider anytime something comes up that is markedly different than your normal. It could be one of Fibromyalgia’s many symptoms, but it’s always better to be safe. I remember one time many years back when I started having severe pain in the lower left quadrant. It happened when I was living in Calgary and I had just finished a volunteer shift at the Calgary Stampede grounds. I’d eaten a corn dog and a few minutes later, was suddenly hit with terrible pain in my lower left side. I could barely walk but managed to make it on to the C-Train (the Lite Rapid Transit) and then called my husband to pick me up at the station to take me to the hospital. It turned out that a cyst that I didn’t know I had on my ovary had burst. I was prepared to put it down to something Fibro related and the only reason I got the proper diagnosis is because the pain was so bad, I went to the ER.

It’s easy to be dismissive of everything we feel and call it Fibro related, so we have to be careful not to fall into this trap. How do you tell the difference between Fibro related pain and something new or different for you? Here is a checklist to use:

  • Familiar or not – have you felt this same symptom before, or does this feel like something “new” to you?
  • Does it last longer than usual? This could potentially be a new situation that needs attention
  • It it more intense than usual? This could be the sign of a new problem
  • Is it in a new part of your body? This is more likely the sign of something new
  • Did it start suddenly or gradually? Gradual pain is more likely to be Fibro related.
  • Does something just feel “off” to you? Trust your instincts!

It’s recommended that everyone go for an annual checkup, but it’s especially important that you and your doctor stay in touch with how you are doing, outside of your Fibromyalgia. Don’t forget about the rest of your health.

Speaking of health, I want to share this new Health Alphabet. It may be helpful in future medical discussions, especially if aging is becoming a concern for you:

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Okay, a little humour never hurts, but when it comes to Fibromyalgia and changing symptoms, you do need to be careful not to overlook something that could have the potential to be serious. Always trust your instincts about how you’re feeling and see your doctor if something just doesn’t seem right. It’s better to be safe than sorry.

There is always hope

Chronic Pain and The End Of Life

Helping hand

Chronic Pain can be so debilitating that you may sometimes wish for an end to it all. Although I will touch on assisted suicide in this post, it’s also never too early to have your plans in place for end of life care and preparations for what happens when you do pass away. It’s a difficult subject that no one wants to talk about but I’ve never been one to shy away from the hard topics before.

Wills and Financial Planning

Speak with your lawyer and make sure you have a current will. Discuss estate planning, trust funds, donations and any other legal matters so everything is up to date. Your Financial Planner can also help you set up your affairs so that it’s easy for your family to follow your plans. Make sure your financial planning is sound and in line with personal desires.

Make a Plan

To ensure your end-of-life care is handled the way you want, make a comprehensive plan. This allows you to outline everything about the care you wish to receive once you are no longer capable of making your own decisions (like pain management or DNR instructions). Involve your family and friends in your end-of-life plan so that anyone who might be responsible for your care knows exactly what your wishes are. Have them use it like a guide, and be sure to talk through anything they might not agree with or understand to make sure they know why you want things a certain way.

Keeping your loved ones in the mix serves multiple purposes: Not only does it help you better protect yourself, it helps them process and work through your ailing years and eventual passing. A plan you’ve discussed and prepared your family for will bring them ease and relieve a huge burden.

Talk to them about those feelings of loss. Make sure they have an understanding of what to do when that loss happens to help them cope; how to ask for help, how to get help with those feelings. Helping your loved ones can also help you come to terms with your own end-of-life process. You may have many years to live or your health may be such that you are facing the end of your life much sooner. Being prepared for death is perhaps the most difficult thing you will ever experience in your life. Here are a few things to consider:

  • Say the “6 Things” you need to say to your loved ones, friends and enemies. It is never too early to say these things.

“I’m sorry.”
“I forgive you.”
“Thank you.”
“I love you.”
“It’s OK to die.”
“Goodbye.”

  • What are my beliefs about death? Do I need to make peace with myself or a Higher Power?
  • Do I need psychological, emotional, spiritual care, counseling or support?
  • Have I left a legacy? Identify life lessons, advice, hopes and dreams that you would like to pass on to family and friends. Write or record these. Identify a person who can pass these along to the people to those whom you wish to receive your legacy.
  • Have I written my personal history? You can write it down, or record on audio or video tape, etc. Who is to get my personal history?

Funeral Arrangements

Many people decide nowadays to make their funeral arrangements in advance, to spare their family the task in their time of grief. Most reputable Funeral homes have options to pre-pay for services including cremation, caskets, urns, plots, etc., so you can rest assured that everything is taken care of in advance. Contact the Funeral Home of your choice to discuss your wishes with them. Most of them offer a free planning book as well to help you organize all your paperwork in the event of your death – your wills, banking information, life insurance, important contacts, etc.

Assisted Suicide

Assisted Suicide is a very controversial topic these days. I want to state clearly that I am FOR assisted suicide when every option has been played out and a terminally ill person has reached a point in their health journey where they have no further reason to go on. People who opt for AS are not looking for a quick solution – they have put a lot of time and thought into their decision and they know it’s the right choice for them.

We treat our animals more humanely than we do people, and when the time has come when a person is ready to die, I think we owe them the option to do so with dignity. I live in Canada, where Euthanasia became legal in 2016 for patients experiencing intolerable suffering. Strict laws govern access to legal assisted suicide in Canada and there have been at least 744 assisted deaths since the law was first passed.

These are hard things to talk about, but the fact remains that the more prepared you are in advance, the easier things will be in a crisis later. Just remember though that despite the nature of chronic pain, everything is worth fighting for… love, laughter and life itself. It is always my signature at the end of each post but today, I mean it even more…

There is always hope

 

 

Refresher Course

I thought I’d start out the year with a refresher course on the conditions I live with and how blogging has had such an impact in my life. Because of my blogging, I have had chances to be interviewed in a Canadian National newspaper, on two different podcasts, and several different articles online. The various conditions I write about are because of the fact I live with them and am personally acquainted with them. So, without further ado, here we go:

  • Chronic Pain
  • Chronic Fatigue Syndrome
  • Fibromyalgia / Myofascial Pain
  • Osteoarthritis (in all my major joints)
  • Forestier’s Disease (aka D.I.S.H.)
  • Type 2 Diabetes (on insulin)
  • Trigeminal Neuralgia
  • Bipolar Disorder
  • Gastroparesis
  • Internal Adhesions/Scar Tissue/Chronic Pelvic Pain
  • Hypothyroidism

So I’ve talked about my Chronic Pain from Fibromyalgia and Osteoarthritis, and when I say I have arthritis in all my major joints, I’m serious. I have it in my shoulders, elbows, wrists and fingers, my cervical, thoracic and lumbar spine, left hip (right hip has been replaced), knees, ankles and toes. Some areas like my left hip and right knee are quite serious and will need replacing, but the rest I’ll have to live with.

Meanwhile, my thoracic spine has a different type of bone condition called Forestier’s Disease or D.I.S.H., which stands for Diffuse (Widespread) Idiopathic (Of Unknown Cause) Skeletal (Referring to the Skeleton) Hyperostosis (Excessive Growth of Bone). It forms in the shape of a bone spur, but instead of a normal spur that could be removed, it looks more like melted candle wax on the spine, so nothing can be done about it.

Diffuse-idiopathic-skeletal-hyperostosis-DISH-of-the-spine-grave-290-male-50-60-yrs

I also have regular bone spurs on my right hand – I had one removed from inside my pointer finger as it grew through a tendon, and there is a second one on the outside of my middle finger growing through the knuckle. Both have been very painful and interfere(d) with typing and writing.

My Type 2 Diabetes has been with me for 8 years now and is mostly under control. I go for regular blood tests every 3 months, to get my A1C numbers that show my average blood sugar levels for the previous 3 months. Generally speaking, I average around 6.9 to 7.2 which is slightly higher than the 5.9 – 6.2 my doctor would like, but I do my best. I use long acting insulin at night, 14 units which does a good job at helping to keep things under control. I’m trying to eat better, but I’m a sucker for sweets and it’s hard to be disciplined.

My Trigeminal Neuralgia is something I’ve talked about before so you can read the article about it here.  The same goes for my Bipolar Disorder.

So, what else is on that list. Ah yes, the ever lovely Gastroparesis

what-is-gastroparesis

Now, the way they determine if you have this or not is through something called a motility test. In my case, they wanted me off ALL of my meds first to make sure they weren’t contributing to the problem, so for 2 days prior to my test I had to quit my medications cold turkey. That included my meds for Fibromyalgia, my anti-psychotics AND my opioid narcotic for pain. Do you have any idea what going through withdrawal is like? It was horrendous. I had the shakes, the runs, I couldn’t eat or sleep, and for those 2 days, I alternated between thinking I was dying and wanting to die to having to feel better in order to die.

On the day of the test, I went to the hospital to where the Nuclear testing is done. I knew that I was going to be eating an egg sandwich with a radioactive tracer in it and that tracer would be monitored through a series of special x-rays, but I explained to the nurse that everything I ate was immediately running right through me like water. She was so sweet…she “reserved” me a private bathroom, brought me my sandwich and told me to eat as much as I could while I sat there. Talk about embarrassing!!! It’s embarrassing writing about it!!! But, I managed just over 3/4’s of it, which she said was enough. She brought me into the x-ray room where there was a gurney to lay on, and then gave me a warm blanket.

The first pictures were taken every 2 minutes, so I just sat. Then they took them every 5 minutes apart, then 10 minutes apart, then 15, then 30 and finally 2 pictures 1 hour apart each. In between, I slept on the gurney, and my nurse brought me as many warm blankets as I wanted. She also brought me a cold wet face cloth for my forehead. When it was all over, I gave her a big hug and thanked her for being so kind. Then I took my medications asap!!!!

The tests showed that I have a moderate degree of low motility so my food sits in my stomach for a long period of time before moving on to the intestines. This explains why I always look bloated and pregnant. There are medications that can be taken, but I’ve asked my doctor if we can just hold off and wait on that for now. This is more of an inconvenience than anything right now, and I just don’t want any more drugs in my system than I absolutely need. If the problem becomes hugely bothersome, we’ll revisit it, but in the meantime, I’ll just try to watch what I eat, drink more water and try to exercise a bit more.

The Internal Pelvic pain is because I have had a number of pelvic surgeries over the years, so there is a lot of internal scar tissue left over that has attached itself to things like my bladder and bowel, etc. There are occasions when I move a certain way, and those adhesions stretch very painfully – it feels like velcro being ripped apart except it’s my body doing the ripping. It takes my breath away sometimes, it’s so painful, but it only lasts for a minute or two, then it’s gone.

Which leads to Hypothyroidism. For a long time, I assumed that Chronic Fatigue Syndrome was the only reason for my constant exhaustion, as my Thyroid numbers always came back normal on blood tests done every three months. One day though, my thyroid went rogue and those numbers were crazy. I had been especially tired…like dragging my ass tired, needed toothpicks to keep my eyes open tired

DraggingMyButt

Oohhh, that is NOT a good look on me!!! My doctor put me on meds and I could feel a difference in a very short period of time. On my next 3 month course of blood work, everything was back to normal, so now I take Synthroid on a daily basis for the rest of my life, to ensure I have a properly working system. So glad that was an easy fix!!

So there you have it. It’s a tough road to walk, I have to be honest. I live with pain 24/7 and have for almost 30 years now. Suffice it to say that you have to be mighty strong to live like this, to get through the day-to-day of actually living in pain. I know some people who just couldn’t. They tried so, so hard, but in the end, their pain was too much for them, and they took their own lives.

I’m a huge advocate for assisted suicide for people who live with severe, intractable pain. We take better care of our pets when they are hurting than we do our humans, and I think that is just plain wrong. I believe every human has the right to choose to die with dignity and I’m glad our Government has come on board with this. I know it’s not perfect, but at least things have started and that’s the main thing.

One thing having all these conditions HAS done though is that it’s given me a platform to blog about them and to discuss them as a Patient Partner in my volunteer work. I live in Langford, BC Canada and I belong to an organization called Patient Voices Network. They help take the voice of the patient and partner us with Heath Care Organizations who need Patient Advocates for the work that they are doing. I’ve been involved in committee work, focus groups, conferences, quality assurance forums, seminars and more because of PVN. The educational experience I’ve received is on par to anything I attended in my working life and in fact, when I attend anything in their offices in Vancouver now, it’s like being greeted by family – I know everyone and they all know me, I’ve been there so often for meetings.

I currently sit on 4 different committees: I am a member of the PVN Oversight & Advisory Committee, I currently sit on the Clinical Resource Committee for the BC Emergency Physicians Network , and I accepted a role with the Laboratory Quality Council Committee. We are responsible for all Labs on Vancouver Island as well as all Medical Blood Collection Stations.

Most recently, I took on a new role as committee member on the Measurement System for Physician Quality Improvement- Surgical Group. I am surrounded by top surgeons in Cardiac Care, Orthopedics and Neurology, plus high-ranking members from the Ministry of Health, the BC Patient Safety & Quality Council and other Health Organizations – and then there’s me. The lone patient voice to represent the masses. It’s a huge responsibility and one I take very seriously. I’ve already spoken out to let them know that while they see quality one way, I as a patient see it differently, and I expect my voice to be heard. It was empowering to have them tell me that I am the whole reason the others are there, because it’s all about the patient in the end.

So all this adds up to some pretty amazing experiences for me because of the pretty extraordinary pain that I live with on a daily basis. I have been truly blessed in my life, and I’m fortunate to be able to share it with you, my Dear Readers. Thank you for taking this journey with me. I hope to bring you more articles this year about Chronic Pain, Chronic Fatigue, Fibromyalgia and other Invisible Illnesses. And remember…

There is always hope

Ending The Year

It’s December 29th and the year is drawing to a close. I want to take this time to simply recap the year and say thank you to my Dear Readers for spending your time with me in 2018.

From the beginning of the year, when I really got started blogging, I started out by writing Happy New Year .  My main theme at that time was to talk about my hip replacement surgery which was the real reason this blog came into existance. I had been searching for personal stories of “younger” women who had undergone hip replacements but hadn’t found much, so I thought I’d share my story for others who might find it helpful for themselves. One thing led to another and before I knew it, I was writing about my other health issues, including Fibromyalgia, Chronic Pain, Chronic Fatigue and Invisible Illnesses.

I’ve had the opportunity to share my thoughts about body image, intimacy when you live with Chronic Pain, the sleeplessness that comes with Fibromyalgia and Invisible Illnesss, and how the simple loss of bathing can mean so much heartache. On the other hand, I’ve been able to share about gratitude and finding joy on more than one occasion, so I’ve tried to focus on the positives as much as possible, whenever possible.

I couldn’t do this without you. Without my Dear Readers, there wouldn’t be much sense in putting this out there, so I appreciate each and every one of you who comes to my blog and reads what I have to say. You may not comment on every post, heck…you may never comment on a post I write, but the numbers don’t lie. My stats show that you are there and that you keep coming back. In fact, when I took a week off and didn’t do a thing to market the blog…no Pinterest, no Twitter, no Social Media at all, the numbers dropped, but a bunch of you still came by to see if there was anything new.

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You can see where I was away for the week. On Nov. 15th and 16th, I was in Vancouver for a volunteer meeting, and away from my computer the whole time. When I put the effort in, you do the same and come back to see what’s new…the numbers don’t lie, and I am forever grateful.

So, to wrap up 2018, I want to say thank you. You’ve helped me reach a far greater level of success than I ever thought I’d make, simply because you like to read my thoughts. That’s pretty amazing to me. I just want to provide as much information as I can to anyone who is living with Fibromyalgia, Chronic Pain, Chronic Fatigue or Invisible Illness. I want you to know you’re not alone. I’m right there with you and for as long as I’m able, I will continue to write and bring you articles and information to help you thrive.

I wish each and every one of you a very Happy New Year. May you be blessed in 2019 with the very best the year can offer. Remember…

There is always hope

Pain In The Forecast

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If you’re like me, the weather can often be depressing at this time of the year. Depending on where you live, you could be facing either ongoing rain (the West Coast) or the cold and snow (the Prairies and East Coast) with the exception of those few lovely warm locations in the states that stay beautiful year-round.

For People with Chronic Pain (PwCP), the descent into the colder wetter weather can be a real nightmare. We tend to have more flare-ups in our pain, our symptoms overall become harder to deal with and pain and side effects have a tendency to last longer than usual as well. Sleep disturbances become more frequent also, whether that means more sleep than usual, or less.

Chronic pain symptoms possibly affected by cold weather include:

  • Swelling around joints
  • Inflammation near the spine
  • Muscle stiffness or tightening

Poor circulation is a symptom of many chronic conditions, and most in the scientific community agree that cooler weather affects circulation. For patients with underlying conditions like diabetes, decreased circulation can aggravate problems with joint and back pain.

Take a look at this AccuWeather Arthritis Index for a Monday in 2018 in the US. It showed mixed weather conditions across the country and gave some corresponding issues for how health was affected:

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Another theory on the possible connection between cold weather and increased chronic pain involves bodily changes. Blood vessels in limbs constrict, or shrink, to compensate for a loss of heat to maintain the body’s core temperature. As a result, pain signals sent via nerves may be amplified.

While some people with chronic pain do report feeling better when moving to a warmer climate, the body typically adjusts to new climates over time, so relief is likely to be temporary. A good workout, soaking in a tub of warm water, and applying heat packs or warming gel are just a few of the remedies chronic pain sufferers can use to counter changes in pain when cooler weather arrives.

Here are a few of my recommendations for warming products you can find on Amazon.com to help combat the cold and rain:

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  • Delivers deep, penetrating, moist heat to the neck, shoulders, and upper back to relieve pain, aches, tension, and stress
  • The heavy weight of the Huggaroo wrap retains heat longer, keeps the wrap in place around your neck and shoulders, and delivers deep pressure therapy for extra relaxation
  • Provides subtle and soothing herbal aromatherapy while your muscles are relaxed by the heat
  • May also be chilled in the freezer and used as a cold pack for a cool, refreshing experience
  • Designed in Nashville, TN, USA and meticulously crafted from premium materials with attention to the smallest details. 100% satisfaction guarantee

 

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  • Includes (Pack of 3) ThermaCare Heatwraps Advanced Muscle Pain Therapy air activated Heatwraps
  • Patented heat cell technology penetrates deep to the source of pain, increasing blood flow to promote muscle pain relief while accelerating healing
  • Specially designed to help relieve pain associated with muscle aches, stiffness, tightness, muscle spasms and cramps
  • Thin enough to wear discreetly under clothing
  • Flexible enough to wear on the move, exercising or relaxing

 

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About the Heated Neck Pain Relief Pillow

  • Microwavable / Heatable Neck Wraps for unbelievably fast pain relief! Ideal for shoulder & neck pain when warm. Relieve pain in minutes by simply misting your pillow & putting in the microwave. When nice and moist your pillow will stay hot for up to 30 minutes.
  • Filled with Organic Flaxseed & Natural Herbs like Lavender makes this pillow the ulitmate anxiety and stress relief device.
  • Your new Neck Pain Relief Pillow is designed to be put in the freezer so you can have the best of both worlds, hot or cold. We recommend freezer time of at least 1-2 hours for maximum effectiveness.

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About the LANBRELLA

  • UPGRADE INVERTED FOLDING DESIGH: Shorter and Easy Carry. Convenient to store anywhere. Suitable for travel and daily use.
  • HIGH-END UMBRELLA: Best-in-class construction, stylish and sturdy, high quality, durable travel umbrella.
  • INNOVATIVE SAFE LOCKING SHAFT: This safety umbrella has a self-locking shaft. While closing it, if you slipped, the rod doesn’t move. You can just push it together easily. It’s like a seat belt and locks every step on the way. Most umbrellas will flick back if you do not push the handle into the correct position; it may cause an accident by hitting you or other people. LANBRELLA safety umbrella effectively prevent accidents; riot security system, closed umbrella safer and easier.
  • SUPERIOR RAIN RESISTANT: The Canopy is made by 210T Pongee fabric which makes it good waterproof performance. The LANBRELLA travel umbrella protects you in a drenching downpour with a high quality canopy coated with waterproof technology. Water won’t soak through but instead beads up and bounces off, preventing the leakage you get with other umbrellas.
  • CONVENIENT AND GENTLY AUTO OPEN/CLOSE BY ONE HAND: It is very convenient to open or close the umbrella only by pressing the button on the handle. Just push the button once to automatically open and press again to instantly fold the canopy closed. It will open and close gently like a gentleman. You do not need to wait another second to open the umbrella when you get out of your car in the rain, especially in heavy rainfall, even when your hands are full.

 

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About the Pajama Gram Robe

  • ROOMY FIT – We use natural HIGH-QUALITY FABRICS, so our PJs are designed to accommodate shrinking; We want our customers to be entirely satisfied with our PJs, so WASH BEFORE WEARING for the best fit
  • SUPER SOFT– Super-sweet robe featuring long sleeves, side pockets and roll-back cuffs
  • SUPER-COMFORTABLE – Made from premium-quality materials, including our super-soft fleece that keeps you exceptionally warm and comfortable
  • COMFORT-FOCUSED – Made to keep you comfy for hours of relaxation

 

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About the Multi-Use Electric Blanket

  • Using carbon fiber heating material, producing far infrared ray, improving blood circulation.
  • Soft fleece material, bring warm touching feeling.
  • The heating inner set can be taken out, easy for you to wash the blanket.
  • USB can be connected to computer, power bank, convenient for use.
  • A necessary equipment in winter, when reading, watching TV, working, you won’t feel cold any more.

I hope this information helps to explain what we Pain Warriors already knew – pain gets worse when the weather does. May these suggestions for warmth and comfort give you some ideas to break the chill and get back to being cozy again until the return of Spring.

There is always hope

Holiday Recipes

I’d like to share some favourite holiday recipes with you here. These are ones that my family adores the most and that are my true favourites.

Whipped Shortbread

WhippedShortbread

  • 1lb butter, softened (REAL butter, no substitutions on this!!)
  • 1cup cornstarch
  • cups flour
  • 1cup icing sugar 
  1. In a large bowl, cream the butter.
  2. Add dry ingredients.
  3. Whip for 10-12 minutes; batter will be shiny, and form peaks.
  4. Optional- Chill dough overnight (you can keep for a few days in the fridge). Before baking, take out and leave at room temperature for 1 hour, whip it up again in the mixer for about 5 minutes. This option allows you to roll and shape the cookies. Still melt in your mouth!
  5. Drop from a 1 tsp measure OR roll dough on to a cookie sheet based on the option you chose. (I level the tsp to make uniform, tiny cookies. A very small cookie scoop or tiny melon scoop is handy for uniform cookies. Due to how soft and delicate this cookie is making it bigger is not recommended).
  6. Bake at 325 degrees for 8-10 minutes, OR until bottom edges begin to brown. If they are smaller then watch the first batch to monitor the time required per batch.
  7. Watch them carefully they can burn quickly.
  8. When removed from the oven allow them to cool for about two minutes on the cookie sheet, carefully move them onto a cooling rack with a spatula.
  9. Allow them to cool on the rack for 15 minutes. If they are NOT cool they will crumble more easily and won’t set properly.
  10. ***Avoid letting them cool longer than necessary on the cookie sheet or they might stick and break apart when you try to move them.

Fudge Crinkles

fudge

  • 1(18 1/4 ounce) box devil’s food cake mix (Betty Crocker Super Moist suggested)
  • 1cup vegetable oil
  • large eggs
  • confectioners’ sugar or granulated sugar, for rolling
  1. Preheat oven to 350°.
  2. Stir (by hand) dry cake mix, oil and eggs in a large bowl until dough forms.
  3. Dust hands with confectioners’ sugar and shape dough into 1.5″ balls.
  4. Let sit for 2 minutes
  5. Roll balls in confectioners’ sugar and place 2 inches apart on ungreased cookie sheets.
  6. Bake for 8-10 minutes or until center is JUST SET.
  7. Remove from pans after a minute or so and cool on wire racks.

Coconut Macaroons

Coconut Macaroons Recipe 2

  • 14ounces sweetened flaked coconut
  • 14ounces sweetened condensed milk
  • 1teaspoon pure vanilla extract
  • 2extra large egg whites, at room temperature
  • 1teaspoon kosher salt
  1. Preheat the oven to 325 degrees F.
  2. Combine the coconut, condensed milk, and vanilla in a large bowl.
  3. Whip the egg whites and salt on high speed in the bowl of an electric mixer fitted with the whisk attachment until they make medium-firm peaks.
  4. Carefully fold the egg whites into the coconut mixture.
  5. Drop the batter onto sheet pans lined with parchment paper using either a 1 3/4-inch diameter ice cream scoop, or 2 teaspoons.
  6. Bake for 25 to 30 minutes, until golden brown.
  7. Cool on wire racks.

White Chocolate Chip Cranberry Oatmeal Cookies

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  • 3cup sugar
  • 1cup packed brown sugar
  • 1cup butter, softened
  • large egg
  • 1teaspoon vanilla extract
  • 1teaspoon cinnamon
  • 1teaspoon baking soda
  • 1teaspoon salt
  • cup all-purpose flour
  • 1cups quick-cooking oats (not instant)
  • 3cup dried cranberries
  • ounces white chocolate chips
  1. Preheat oven to 375°F.
  2. In a large bowl using an electric mixer combine the sugar, brown sugar and butter; mix well to cream together.
  3. Add in egg and vanilla extract and mix until combined.
  4. Add the cinnamon, baking soda, salt and flour and mix well.
  5. Fold in the oatmeal, dried cranberries and white chocolate chips- making sure that all ingredients are uniformly distributed.
  6. Roll dough into 1-inch balls and place 3 inches apart onto a greased cookie sheet and bake at 375° for 10-12 minutes, just until the edges are lightly golden.
  7. Remove from oven and let cool for 2-3 minutes on the cookie sheet, then transfer cookies to cooling rack.

 

Remember…There is always hope