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How I manage my chronic pain.

managing chronic pain
Managing chronic pain

In 2016, a teenaged woman in a rush to get to a party, accelerated into the back of my car. Because I take good care of myself – I seemed fine. However, to be on the safe side (after reporting the collision to the police and my insurance company), I went for a check up at a medical clinic, where the physician recommended massage and physical therapy treatment.

The massage therapist was excellent, but the physiotherapist had no experience in treating injuries sustained in motor vehicle collisions nor was he trauma informed. From assessments by other health practitioners, my neck, hip and jaw suffered significant amounts of damage, that he failed to find. As a result treatment for these conditions was delayed.

Nearly, nine months post collision, I found a physiotherapist who understood my condition, providing a proper diagnosis and care for traumatic brain injury. Managing the effects of concussion was difficult, because while I looked healthy, I had mood issues, ranging from high anxiety to depression. I was often short tempered and aggressive with people who were trying to help me. 

Through my family doctor, the behavioral health consultant recommended his colleague who specialized in chronic pain management using the work of Jon Kabat-Zinn, who designed Mindfulness Based Stress Reduction (MBSR) interventions. Then, still under their care when I was hit again in 2018 by a young man following too closely. 

Alberta Healthy Living Program

Right before I was hit in 2018, I took training for Better Choices Better Health – Chronic Pain, a six week self-management program offered by Alberta Healthy Living program that helps people understand their pain holistically.

The skills I learned facilitating the course helped me cope with my own situation, especially as we had to be in the company of other people. Due to sensitivity to noise, I did not go out a lot with friends, though I could spend time one on one with them. I kept active, going on walks, but couldn’t go back to my active lifestyle of hiking in the mountains. I started ballroom dancing to regain my balance rarely with music. We worked through the syllabus to build enough strength so that I could avoid falling. 

Fear of the future was constant as I needed to find a new career, but the second collision affected my ability to read comfortably for long periods of time. Eventually, I was accepted into a social work program at the University of Manitoba with accommodations for reading. Given my interest in research at school, I enjoyed participating in studies that the university and students needed to complete. They all had reflective components that helped me understand my new social location as a differently abled person.

COVID19, chronic pain and studies

During the height of the COVID19 restrictions, researchers at different universities wanted to investigate how people were affected. One study was conducted through my physiatrist’s office. It was a relief to talk to someone who wanted to know how I felt about the restrictions denying me access to care.

The other study involved checking to see how people felt about COVID19. This one was about two weeks long and was well designed to remind people to do the daily survey. Participants had the option to continue after two weeks to answer the same questions about how they psychologically felt about COVID19. I appreciated taking time away from the news to reflect on how I actually felt about what was happening.

Overall, my chronic pain condition is well managed with eating well and exercise. I still practice mindfulness and talk to a psychologist regularly during stressful periods. 

Be deliriously happy and madly in love with the moments that make up your life.
Sima Chowdry
Sima Chowdhury is a social work student at the University of Manitoba, living in Calgary. When she’s not advocating for a better world, she’s probably lost in the woods.

Thank you!

Clinical Trial Hero would like to thank Sima for taking the time to share her story.

Through stories we create connection and understanding – in relation to others, but also within ourselves. Clinical Trial Hero would like to share your story about your chronic illness in order to help others who may have only recently been diagnosed or simply need to know that they aren’t alone.

If you would like to share your story, please send an email to sandileanneserr@gmail.com with the subject line “My Story”. You are not alone. We get it!

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“Itchy. ‘Quasimodo’ Face. Frustrating.” Urticaria

Urticaria

By Tanya J.

My CIU journey began in March of 2021.  A few hives surfaced and were super itchy.  Within weeks I was covered with hives.  Sometimes my face would swell and on three occasions I went to the hospital with a croaky voice and smokers’ cough. The first two occasions prescribed heavy doses of prednisone (3-day-non-sleeping-rave-in-my-brain), and I was instructed to carry an epi-pen.  

“Zombied” through my day

In order to see an allergist, I needed a doctor’s referral.  My GP was helpful but uninformed on the cause of my hives.  We tried prescription strength Benadryl and “zombied” through my teaching job, with no hive relief. Next we tried Blexten, which provided some relief, but the hives became larger. Then Monteukast which gave me seriously psychotic dreams.   He referred me to the Edmonton Respiratory Clinic.  I was advised to try Xolair.  This process was super difficult.  I filled out form after form and had to get special permission form my benefit plan to approve coverage. The cost of Xolair is absolutely ridiculous at $1488.15 per month. Although I have coverage and am super grateful, I feel sorry for the people that do not have this covered and cannot afford this.  (Side note: I believe that Xolair will subsidize part of this)

I think its making a difference?

I am currently on my 10th dose of Xolair.  I think it’s making a difference???  I avoid Advil (known to cause facial angioedema) and am trying to avoid high histamine foods.  I take 20 mg of Claritin daily as well–not sure what long term effects there might be.  I recently saw my allergist for the one year check up and we are going to up the Xolair dose to see if that makes a difference.  Of course, if this is not covered, there will be no increased dose…

It is a debilitating condition

So here’s the thing, we do not know enough about Chronic Idiopathic Urticaria – causes are different for everyone and treatment varies.  Some people get relief from Xolair within months however I still have huge flare ups often and have no idea why.  Treatment is often determined by what is covered or what you can afford.  It is a debilitating condition that dries your skin, forces you to choose which outfit will hide the hives best, hope you don’t break out on your face (can anyone say Quasimodo face?) and, worst of all, lack of sleep.  

Go away CIU!

Tanya (Itchy) J.

Sherwood Park, Alberta

Urticaria, Clinical Trials, Calgary, Alberta

Thank you!

Clinical Trial Hero would like to thank Tanya for taking the time to share her story regarding Urticaria. Through stories we create connection and understanding – in relation to others, but also within ourselves.

If you would like to share your story, please send an email to clinicaltrialheromarketing@gmail.com with the subject line “My Story”. You are not alone. We get it!

CLINICAL TRIALS

Whether you are new to having Urticaria (Hives) or currently on medication there are benefits to partaking in clinical trials.

Urticaria can be frustrating, emotional, painful, itchy and may dictate patients day to day activities. 😢

Clinical Trial Hero truly understands what you are going through which is why we created our free app that helps those struggling with a chronic illness find clinical trials. 🤗

To find a clinical trial near you please register or feel free to contact us to learn more at clinicaltrialheromarketing@gmail.com

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https://apps.apple.com/app/id1458168820

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Eczema, Atopic Dermatitis children

By Amelia Summers

It started when my child was still very young. 

Joshua was only a few weeks old when we noticed that he was developing strange rashes all over his body. Naturally, it was a worrying and confusing time for us. Babies are vulnerable and it can be incredibly difficult to pinpoint where the problem lies exactly, medically speaking. I remember being concerned, and the confusion exhibited by doctors was not incredibly reassuring either, though I understand they were doing their best.

Soon, the doctor provided us with a name for what was affecting our child: Atopic Dermatitis. 

We were told that there is no known cure for this skin rash, and the cause for it would take some detective work to weed out. Taking care of a baby is hard enough as it is, and it’s true that babies are generally treated gently. However, we as a family had to be extra careful when it came to handling Joshua. I took care to wash my hands and ensure his sleeping area was clean. He cried a lot, to get our attention, but also because of the itchiness of his rashes. The rashes were prominent between the folds of his skin, such as under his chin, between his elbows, and behind the knees. Diaper-changing was a meticulous and careful process, and we burnt through bottles of petroleum jelly very quickly in an attempt to keep his skin moisturized.

We also went through his entire baby wardrobe, dividing his clothes, hats, and socks into separate piles based on the material. Soon enough, it became clear to us that the baby couldn’t tolerate synthetic fibres. We had to buy clothes and check the labels to make sure the material was 100% cotton, for example.

It was a learning process.

As my child grew, we learned that we also had to be mindful of the foods we fed him. Slowly, as a family, our diets shifted as a result and we began cooking healthier, more natural foods as those seemed to lessen the intensity of the rashes.

The doctor visits continued over the years, and we developed a daily routine of bathing the child with special bath oils and applying prescription ointments multiple times a day. I can say for sure that I learned a lot about how vulnerable a child can be to their environment, and we did our utmost to ensure that he was as comfortable as could be.

The external environment really did have its effects.

Besides what we were feeding him and clothing him in, we began to notice that when we visited the city to meet with Joshua’s grandparents, his dermatitis would be markedly more severe. Those were probably the worst of his symptoms. Despite his carefully selected clothing and healthy diet, the external environment was still affecting his atopic dermatitis. Our trips to cities and polluted regions were unnecessarily stressful, and it was a harrowing feeling, realizing we were, in a way, helpless.

With strength as a family and courage, we have persisted.

My child is fifteen years old now, and his rashes have begun to subside. Looking back at his baby pictures, it becomes clear how much his condition has improved, but we’re not out of the woods yet. There’s still plenty of things he has to be mindful of, such as his environment, food, and clothing choices. We still need to purchase medication for him.

Though the journey was a stressful one, and it continues to this day, with every day being a new trial and error experience, I have a positive outlook on his situation. We’ve learned so much about atopic dermatitis as a family and have adjusted our lifestyles to better accommodate for our child.

Despite being a challenging experience, it has also been eye-opening, and I’m proud of how far we’ve come, confident that we’ll be able to tackle the whatever the future brings, despite the hinderances of atopic dermatitis.

Thank you!

Clinical Trial Hero would like to thank Amelia for taking the time to share her family story.

Through stories we create connection and understanding – in relation to others, but also within ourselves. Clinical Trial Hero would like to share your story about your chronic illness in order to help others who may have only recently been diagnosed or simply need to know that they aren’t alone.

If you would like to share your story, please send an email to sandileanneserr@gmail.com with the subject line “My Story”. You are not alone. We get it!

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atopic dermatitis, eczema, skin, skin rash, self conscious, nervous, scared, awkward, steroids, coconut oil

Ever since I was born, it was hard for me to look at myself as normal.

By Andrew Quiambao

Ever since I was born, it was hard for me to look at myself as normal with Atopic Dermatitis. With that said going to the doctor for the cream to calm my atopic dermatitis made me realize that steroids work but will eventually have side effects in the future. 

When I was younger my mom would apply a ton of cream on my skin because my atopic dermatitis was terrible. I’ve been to a dermatologist and all they recommend was steroids or trying different lotions. While switching lotions worked, my skin became used to it and my eczema would still persist. In cooler weather, my skin becomes really dry causing me to moisturize every hour or so, but in warmer weather it makes me scratch a lot causing me to have cuts from scratching too hard.

My skin adapts to the seasons

The way this affects my work-life balance depends on the environment I’m in if the workspace is too cold I have to moisturize a lot and if the space is too hot I would need a fan beside me to cool me off. Living in Canada where the seasons change my skin adapts to the season as its peels off every time a new season starts which is great because the feeling of none dry skin is good but eventually it goes back to being the same. As of recently I’ve stopped using steroids to calm my atopic dermatitis but use it from time to time if it gets worst.

Trying to be confident in my own skin

Having this type of this skin problem has made me self-conscious about myself and how people see me when meeting them. But, I have no control of my skin and have been trying my utmost best to be confident in my own skin regardless of this problem.

Recently I’ve come to accept the fact that I can’t change my atopic dermatitis and the only thing that can help it is steroids or moisturizing frequently but I would love to know a way to help without using steroids.  

Thank you!

Clinical Trial Hero would like to thank Andrew for taking the time to share his story.

Through stories we create connection and understanding – in relation to others, but also within ourselves. Clinical Trial Hero would like to share your story about your chronic illness in order to help others who may have only recently been diagnosed or simply need to know that they aren’t alone.

If you would like to share your story, please send an email to sandileanneserr@gmail.com with the subject line “My Story”. You are not alone. We get it!

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“You have been diagnosed with a rare, but severe case of a chronic pain syndrome which has no cure”

chronic pain

By Mark Hanna

It all started when I was playing soccer with my friends, as I have been used to for the previous 15 years of my life. I was a completely healthy 23-year-old male, with no previous history of any illness, when a contactless mild fall on the soccer field altered my life forever. My condition started with localized pain at the right side of chest, only to progress to severe pain, and significant neurological complications that meant a year of hospital was necessary, and a life with pain will continue to be the reality for as long as I live.

I remember vividly the day I visited the neurology specialist at one of the Harvard affiliated hospitals in Boston. It was likely the 10th or 11th visit to a specialist since the day of the fall, and one which would alter my life forever. I remember at the time, I was wheelchair bound, with constant tachycardia and a 9/10 continuous pain diffused all over my body. At the time none of it made sense. After all it was a whole 2 months before any abnormal pains or neurological symptoms appeared since the soccer fall, I mentioned earlier. I remember struggling to explain how the pain felt, I was not sure how one can experience both severe aching pain, and distressing nerve pain from head to toe all at the same time, throughout the 24 hours of the day.

Chronic pain syndrome – no cure

I remember vividly, the doctor asking to be excused for a few minutes after hearing my story, and coming in with a sad look on his face saying, “I am sorry to inform you that you have been diagnosed with a rare, but severe case of a chronic pain syndrome which unfortunately has no cure. In addition, it does seem that there has been nerve damage that started in one side of the chest, that diffused throughout the body and eventually onto the sympathetic nervous system, and that long-term disabilities are indeed to be expected.

At the time, I remember that the pain was certainly debilitating, I have tried every possible combination of pain medication, and interventions without any improvements. My physical explained to me that my body has underwent a rare phenomenon called the Wind-up pain phenomenon, where the pain receptors inside our bodies undergo a conformational change, which means that they are always turned on and never shut off. Some people have claimed to be CRPS, however my symptoms were even more severe than the typical symptoms associated with complex regional syndromes.

Two years on, I am still living in pain. I still take 15-20 tablets of medications per day, and customary visits to the emergency departments for more acute interventions.

Realizing that you will live the rest of your life in constant pain is never easy. Pain debilitates us, sometimes breaks us, but it can never ever touch our spirits. I have found that the best way to cope with my pain is to love pain. By loving pain, I acknowledge that I am human, and once I realize that then my perspective of our purpose in this life soon becomes apparent.

We are not here to suffer and be broken, but we are rather here to use our pains to lift each other up.

Mark Hanna lives in Richmond Hill, Ontario Canada

Thank you!

Clinical Trial Hero would like to thank Mark for taking the time to share his story.

Through stories we create connection and understanding – in relation to others, but also within ourselves. Clinical Trial Hero would like to share your story about your chronic illness in order to help others who may have only recently been diagnosed or simply need to know that they aren’t alone.

If you would like to share your story, please send an email to sandileanneserr@gmail.com with the subject line “My Story”. You are not alone. We get it!

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“I cannot remember a time of life where my skin did not itch or hurt”

atopic dermatitis

By Mya Salawu

I cannot remember a time of life where my skin did not itch. Or dry out. Or hurt. That’s the worst one: when your skin hurts. As a kid with atopic dermatitis, you would think having weird, scaly skin on your arms and face would be hard. Having skin on your face that was always dry and painful was hard. On top of that was feeling left out.

I remember in grade 5 when my hands, arms and face were peak flare-zone. Winter with eczema is no joke. I would sleep with wraps and layers-on-layers of Vaseline. It was not enough. Much of the time I could barely hold a pencil because it hurt too much to bend my fingers. As I type this I am having some trouble. Imagine playing in the snow. Oh boy. All I wanted was to build forts and make snowballs. Imagine the pain of near frostbite on your cheeks. Now make it 10x worst. That is what I feel every winter almost as soon as I step outside. I love wearing a facemask – exactly what I needed as a kid.

As I type this, I’m looking at my big tub of lotion that is cannot live without. I got it a month ago and it is already half empty. I get as excited for getting new lotion as I do when a new season of my favourite show comes out. #obsessed. If you have a friend with eczema, it is guaranteed that they would love the gift of a lotion refill. Winter is coming, time to stock up.

Variety of therapies

You might be wondering, there should be a cure by now, right? Not just yet. There are, however, a variety of therapies, I should know, I have tried loads. When I was younger, I focused more on a pharmacological approach: from prescription creams, ointments, even for a while I would use a special shampoo because my scalp would be so dry it would bleed. Some worked, some didn’t. The hardest part is when something amazing stops working after having built a tolerance to it. I have a collection of half empty tubes of various ointments that I had to stop using since they either stopped being effective or started to make my skin worse. Worse! It can be frustrating at times.

Avoiding trigger foods

Now, I am trying out a medicine cabinet-free approach. Recently, I have changed my diet. So far that has helped. I avoid trigger foods like dairy, anything heavily processed and started eating more foods like fruits and nuts that help fight inflammation. I am in no way a healthcare professional, but this has helped me a bit. Moisturizing any time after contact with water as well. I have my tub of lotion anytime I shower, swim or go to a waterpark as well. Nothing I have done has gotten rid of my eczema 100%, but it has become more manageable. Now, I can go to bed without getting distracted by my arms being really itchy. Even now I occasionally wake up due to itchiness, but I am learning to manage that. Right now I don’t really need to wrap my arms while I sleep, but winter is coming, so I am need prepare for that. Time to get my Rocky playlist going, it’s training season!

Though I have had eczema for much of my life, there is still quite a bit for me to learn. Yourself as well. Atopic Dermatitis is a fairly common condition. Sure, there’s no cure, but that will not stop me from doing… anything really! Like many chronic conditions, I make adjustments as I go through life one jar of lotion at a time.

Thank you!

Clinical Trial Hero would like to thank Mya for taking the time to share her story.

Through stories we create connection and understanding – in relation to others, but also within ourselves. Clinical Trial Hero would like to share your story about your chronic illness in order to help others who may have only recently been diagnosed or simply need to know that they aren’t alone.

If you would like to share your story, please send an email to sandileanneserr@gmail.com with the subject line “My Story”. You are not alone. We get it!

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There is hope with MS.

dealing with MS

By Robin Vinge

I believe I have had MS since I was 21 years old although I was not diagnosed until I was 33 years old. Part of the reason why I believe I was okay for the longest time was because I avoided wheat (because I thought it triggered acne). When I was 33, I signed on for a marathon and I carbo loaded where I had previously avoided wheat pasta and consuming a lot of bread products. That is when I developed strong symptoms of numbness and ataxia that could not be overlooked. I also developed loud ringing in my ears.

At that point I went to the urgent neurology clinic and my family paid for an MRI which showed demyelination. Since that time and a second MRI that confirmed my diagnosis, my life has changed a lot. I have been living with MS since I was 21 (I believe) because I had symptoms of weakness in my legs (I was a high- performance athlete in my youth) intermittently in my twenties as well as some sensory symptoms that showed up from time to time. I have radically changed my diet in order to manage my MS and it has paid off.

I was super exhausted.

I have studied every expert with MS and feel very competent in my management of it. I did not always feel this way. It has taken me many years to feel confident in my management of it.

In the fifteen years following my diagnosis, I have had some challenging episodes of relapse and have been completely incapacitated at times. One flare I had left me unable to talk and communicate verbally. Another episode I had double vision for 2 weeks. Another bad flare lasted 6 weeks. In that episode, I actually flew home to Kelowna and moved in with my parents until I could function again. In that flare, I lost the use of my hands and felt like I had the sensation of splinters throughout my body. I was super exhausted and in bed for the majority of that flare.

The anxiety and depression of having MS is challenging.

In 2017, I had started running and I had a flare which started with an episode of sciatica that ended up with me being hospitalized because I had extreme pain when I was trying to lie down. I had severe symptoms at that time including clonus. I was put on steroids in the hospital and got out in 2 weeks time. If I stay on my diet which is extremely strict 100%, I feel that I can live in balance with MS. Management of MS is a full- time job though and it is not for everyone.

The anxiety and depression also that comes with MS is challenging. I have done so much work on my self. I meditate every day. I manage anxiety with Emotional Freedom Technique and supplements like L-theanine. I live each day in the present moment and have done training in Mind/Body/Medicine to best equip myself with life long management of MS.

I am grateful for the positive benefits.

Since MS showed up in my life, it has affected every part of my life and I am grateful for the positive benefits that have incurred because of it. I have become more self aware and believe in myself more. I have so much compassion towards myself and my life post MS.

I come from a big family and my siblings have been so helpful to me if I have needed any support. I can keep going because of them and their love for me. I am truly grateful for them. I have a significant other but I have no children.

Empower people with MS.

If you have recently been diagnosed with MS – there is hope. When I was diagnosed with MS, I was shown a graph with a path leading downhill and that was so discouraging to me. There are people that are living in balance with MS all over the world and I am one of those people.

There are programs with other doctors leading that path like George Jelinek (OvercomingMultipleSclerosis.org) in the U.K.

To empower people with MS is so important so they do not feel like a helpless victim of their fate. There is research underlying the recommendations for management of it.

Robin Vinge is a naturopathic doctor and gifted presenter, Dr. Robin Vinge combines the values of naturopathic medicine with self-empowerment. Her strategy is to provide simple solutions that anyone can apply immediately and see beneficial results. “The quicker people see results, the more likely they are to invest in doing the right things for their health.” www.robinvinge.com

Thank you!

Clinical Trial Hero would like to thank Robin for taking the time to share her story.

Through stories we create connection and understanding – in relation to others, but also within ourselves. Clinical Trial Hero would like to share your story about your chronic illness in order to help others who may have only recently been diagnosed or simply need to know that they aren’t alone.

If you would like to share your story, please send an email to sandileanneserr@gmail.com with the subject line “My Story”. You are not alone. We get it!

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Knowing my body’s limitations has kept me out of a wheelchair.

Bertolotti's Syndrome, transitional lumbosacral vertebra, backpain, chronic pain
Bertolotti's Syndrome

By Pamela Clayfield, RN

My name is Pamela Clayfield and I live in Waterloo, Ontario. I am an RN which puts a special twist on my experiences. I appreciate that Dr. Joshi with Clinical Trial Hero is putting all this together as there are people all over the world who are lost and searching for someone else who might not only understand what they are going through but they might get an idea of what’s wrong with them if they don’t have a diagnosis yet.

My story began twenty years ago. I was a single mom to a toddler and working a variety of day and evening shifts out in the community when I began experiencing hip pain to the point I was walking with a limp. In 2002 I changed chiropractors and we thought we had found the source, a psoas muscle in spasm. That was short-lived. I left community nursing for a teaching job later that year. In 2003, I went to my family doctor who bet me the problem was in my spine, not my hip, and ordered an x-ray. Sure enough, he was right. He told me that my spine would degenerate at a faster rate and gave me about ten years. I spiralled, as anyone would, into hopelessness that I wouldn’t even walk to my daughter’s high school graduation. I was 29.

Transitional Lumbosacral Vertebra is what the results showed. Now it’s more commonly referred to as Bertolotti’s Syndrome. It’s considered a congenital condition and a rare disease despite affecting 10-20% of the population. The bottom line, I was born with it.

As a nurse I wanted to know more, if that was possible. With the internet still in its infancy, compared to now anyway, there was limited information. My nursing textbooks made no mention of it at all. If you search now it comes up with pages of results, sample x-ray and MRI images and all the statistics you could want. During development the top of the sacrum develops incorrectly. It can be a partial attachment or, in my case, it created an entire sixth vertebra. The pelvis attaches to the sacrum to create stability, but I don’t have that stability because I don’t have the proper attachment points.

What I experience.
Over twenty years I have lived with an array of symptoms. What most people don’t realize is I always have pain in my low back to some degree. On any given day I can have referred pain or sensations, radiating pain, numbness or tingling in any part of my legs or feet. Referred pain is when the spine or muscles get a grip on a nerve and that nerve sends the message to my brain that I have pain in a part of my hips, legs or feet when I actually don’t.

The referred sensations tell me that a part of my legs or feet are numb, tingling or some other feeling. I have spent hours trying to remove a hair from between my toes (that doesn’t exist) or brush away a bug crawling on my leg and I have had the feeling of either warm or cold water being poured on my feet. This summer I was asked if I felt the mosquito on my leg and I didn’t feel a thing.

Radiating pain is when the pain is so bad that it radiates down my legs making them ache and feel like dead weights. My pain ranges from discomfort to excruciating and is dependent on a multitude of factors including weather, lifting and too much of anything. I especially can’t sit or stand for extended periods of time. I can’t sit in chairs where the seat is lower than the knees by even the most fractional degree. I even need a pillow under my knees if I have to lie on my back for any reason.

Impact on Life
Chronic pain has had an incredible impact on my life. Of course it has given me physical limitations but also emotional limitations as I struggle, sometimes, just putting my socks on. It is difficult for people in general to understand that I have a chronic condition because I don’t use a mobility aid. Even my mom forgets that I have this condition and that I suffer from constant pain.

I have had to refrain from doing things with my daughter that a normal mom would do. I can only tolerate so much and getting a child, then a teenager to understand that her mom has limitations is beyond difficult.

Emotionally I have felt like I have been on a roller coaster for all these years. When I’m feeling okay, which is usually only during the summer months, my spirits are high and I’m more active. When I’m in pain or start having any of the other symptoms my mood varies. Frustration is overwhelming at times especially anything new like a wedding or unexpected like a family funeral because the first thing I think about is how my back will react to that. I start to feel useless and I wonder why I was given a life filled with physical pain. I have begged loved ones to sever my spinal cord so I don’t have to feel the pain anymore.

Is there anything anyone can do?
When I moved into my role in family practice my boss (and doctor) kind of took over a bit. He ordered blood work to make sure it wasn’t Rheumatoid Arthritis and an MRI. I didn’t have Rheumatoid but the MRI confirmed the sixth lumbar vertebra and also identified two lumbar discs that were pretty much equivalent to beef jerky. I’ve had several done now and it has shown that where the beef jerky is there’s basically bone-on-bone at those two levels which only adds to the pain.

A surgeon I was referred to looked at my MRI and assessed me and there’s nothing he can offer. Spine surgeons will not operate unless they can identify that there is pressure on the spinal cord. They don’t want to operate on someone who can walk, make the smallest error and leave that person in a wheelchair. He explained I was born with it just like some people are born with the appendix on the left so there was little that could be done. I asked about chiropractic and was surprised when he said to keep going as long as I understood it was not a cure. The surgeon understood that I was a nurse and he spoke to me in a professional manner.

I was grateful for that, especially a few years later when I was referred to an advanced physiotherapist in Hamilton who couldn’t link my symptoms to anything on the MRI. She made me feel like I was imagining my pain. She, too, said that I was born with the issues and the only thing she figured my symptoms could be from was the pelvis and other tissues not being connected to the spine properly and the pelvic floor wasn’t designed properly. I already knew that.

Is there any relief?
Throughout the fifteen years I spent in family practice new medications were coming on the market all the time plus I had access to samples of medications that I had seen over the counter but were afraid to buy only to find out they didn’t work.

Robaxacet was tried as a muscle relaxant which is still my go-to for sleep every night. I tried anti-inflammatories and I still use those but only when things are really bad.

I used Lyrica after it was approved for nerve pain and that worked very well for a long time but had awful side effects and I was grateful to wean off of it. I was also on long-acting tramadol for the longest time and it too worked but over time it built up in my system and became ineffective.

I cannot take oxycodone because I don’t like the side effects and I just refuse to take it. I don’t want it. I don’t want to be on narcotics not only because of their addictive properties but because of their side effects.

Every night I spend twenty minutes on my heating pad. I do a set of stretches I was given a long time ago and I sleep with a pillow between my knees.

I have had to resort to an ice pack at times, I have used the Dr. Ho TENS (transcutaneous electrical nerve stimulator) system which helps a bit, and hot baths are amazingly helpful but temporary like anything I try.

The best form of exercise for me and the issues I have is swimming and walking. I know I don’t do enough of either especially walking during the fall, winter and spring but I do plenty of both in the summer… probably the other reason why I feel better during the warm weather months.

What about nursing?
Having a chronic condition has helped me be more compassionate. It has made me fight for patients when the doctor has all but given up. Many patients would call me when all their tests were negative and they would mention one simple symptom to me that they didn’t think was connected to the rest and it would take us down a different path and we’d find an answer.

I spent a lot of time breaking down and explaining diagnoses to patients in layman’s terms which they greatly appreciated. Part of that came from having my own experiences with those in the field. Speak to the patient as a person. Don’t speak above or beneath them. Many of my patients appreciated my empathy and compassion and were sorry to see me go.

Keep pushing
The best thing I have done is come to terms with my condition and the pain that comes with it. Acceptance doesn’t mean I don’t still get emotional. It means that I allow myself to sometimes feel sorry for myself and be angry. I give myself permission to experience those emotions. I remind myself that I have continued to work and I have continued to push myself, hard. I raised a child while working and in constant pain. I have pushed myself to get off the couch, to do the laundry, to take a walk, to put Dr. Ho on, to cook a meal.

Every morning I push myself to get out of bed, shower and dress. This has been harder since I now work from home full time thanks to COVID-19 but I do it because it’s the one way I feel I can beat the pain.

Understanding my diagnosis, knowing my own body and limitations and keeping within those has kept me out of a wheelchair. I did walk to my daughter’s high school graduation. I climbed the stairs to find a seat in the gallery and I went downstairs to take pictures of her crossing the stage.

Each day is a new day and I will continue to get out of bed and face the challenges. I know those challenges, one day, will get the best of me but, for now, I’m still strong enough to push on.

inspiration, weekend getaway,
Pamela Clayfield, RN

Thank you!

Clinical Trial Hero would like to thank Pamela for taking the time to share her story.

Through stories we create connection and understanding – in relation to others, but also within ourselves. Clinical Trial Hero would like to share your story about your chronic illness in order to help others who may have only recently been diagnosed or simply need to know that they aren’t alone.

If you would like to share your story, please send an email to sandileanneserr@gmail.com with the subject line “My Story”. You are not alone. We get it!

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The parenting strategies that have gotten me through my toughest days with diabetes

pregnancy and Type 1 Diabetes

By Kelly Mandryk

When I found out I was pregnant with my second son, I was excited to complete my young family. I looked forward to spending the months ahead preparing our house for a new baby and my older son for life with a little sibling. Instead, I was thrown for a loop when I was diagnosed with Type 1 diabetes following a series of alarming blood test results in my second trimester. I worried that my two main priorities – my young children and my health — would be in a constant battle for my attention. And while those first few months of learning to live with diabetes while raising two kids were not easy, over time I learned that the skills I was gaining as a parent would help me get through my toughest days with diabetes.

The importance of routine

Anyone who’s taken a cranky toddler to the grocery store knows the value of maintaining a consistent nap schedule. As a first-time parent, I wanted to do it all: keep a clean house, maintain a social life, and raise a toddler. But each time I pushed a mealtime or a nap time forward, I ended up spending more time later that day getting my son back into his schedule while handling his moodiness. When life brought me a second son and diabetes at the same time, I had to keep both sons in a schedule while doing the things I needed to keep myself healthy enough to parent them.

Type 1 diabetes is chronic disease where your body attacks its own pancreas, leaving you insulin-dependent for life. I wear an insulin pump to administer my insulin and a Continuous Glucose Monitor to measure my blood sugar. Both devices have improved my quality of life and helped me better control blood sugar, but they both have several components that must be maintained and replaced regularly. When I was learning to use these devices, they would alarm or require my attention at all hours of the day and night.

In the end, I set about building a routine for my kids and my disease management that works for both of us. This routine of setting up my medical devices and managing my medications that has significantly reduced unexpected interruptions throughout my day.

Using distraction to change your mindset

My son loves Christmas. He loves Christmas so much that he can’t settle himself enough to fall asleep on Christmas Eve. One year, after reading several bedtime stories, I told him to close his eyes and think about his five favourite Christmas memories and to tell me about them in the morning. After a few minutes of quiet chatter, he fell asleep. I had given him something to think about that took his mind away from his excitement and allowed him to fall asleep.  

After that, I started using this technique to push myself through the sometimes-painful process of inserting a new infusion set for my insulin pump. Sometimes I list my favourite Buffy the Vampire characters in order of appearance. Other times I try to name all the kids in my Grade 2 class. It sounds silly but steering my focus away from the self-management activities I must do every day makes me feel more normal and less like a patient.

“Use your words”

Job Description “Use your words” is a phrase parents often say to their young children when they are overcome with frustration or anger. Despite working with my treatment team to be prevent large swings in my blood sugars, this disease is unpredictable and mishaps like mistaking a regular pop for a diet pop or catching the office head cold can send my blood sugars skyrocketing. I am fiercely independent, but my kids have taught me that sometimes, you just need to ask for help.

Accept what you can’t control

When I was first pregnant, I remember the panic that would set in the moment I thought I couldn’t feel the baby kick. When I had one of these scares at work, a colleague who has two teenagers re-assured me that all the worrying mothers do in pregnancy is just training for the worrying that takes place after our children are born. Although I’ve been guilty of waking my infant son up in the middle of the night just to assure myself he was still breathing, after a while, I learned to manage my fears and to accept what I can’t control. There is no use in worrying about my sons getting into a car accident while they are still too young to drive.

Just as pregnancy was a training ground for parenthood, learning to manage fears about my children’s health and safety has helped me cope with the overwhelming amount of information about my disease and what could happen to me. I’m often reminded that years of uncontrolled diabetes can cause complications such as heart attacks, strokes, amputations, or blindness, but these are not burdens I carry around with me every day. As I focus on making sure my sons have a healthy breakfast each morning, I focus on taking the right amount of insulin for what I eat. If I take a small amount of time throughout the day to take care of myself, I know that I am doing my best regardless of what the future may hold for me.

Thank you!

Clinical Trial Hero would like to thank Kelly for taking the time to share her story.

Through stories we create connection and understanding – in relation to others, but also within ourselves. Clinical Trial Hero would like to share your story about your chronic illness in order to help others who may have only recently been diagnosed or simply need to know that they aren’t alone.

If you would like to share your story, please send an email to sandileanneserr@gmail.com with the subject line “My Story”. You are not alone. We get it!

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I’m gasping for air!

The affects of GERD
The affects of GERD

My name is George Ngigi from Nairobi, Kenya. I’m now retired as a teacher. First of all, it would be unfair for me not to acknowledge that I do appreciate this rare opportunity you have given me to walk you through my harrowing experience as a chronic illness sufferer. Similarly, and more importantly, it would be selfish of me not to share that experience, however unnerving it might be because there are people out there who may may be going through a similar ‘ritual’ and need somebody who can give them an assurance that they are not alone in it.

I don’t take it for granted. It might feel hard to open up, but volunteering to say something in good faith about oneself is in itself, a good bold step that comes in handy to accept one’s situation and that of others too.

Now to my story. In my layman’s thinking, I suspect my present-day illness can be traced to many years back when I could have stomach rumblings which had basically nothing to do with hunger. I also felt pain in the stomach after each time I swallowed food. I guess that the pain was emanating from the spot in the stomach where the food was landing. It was not an everyday thing or life experience though. The pain would come and go, meaning that it never lasted long enough to be a matter of clinical concern. During such periods however,  I would have to suffer heartburn accompanied by stomach upsets which I got treated with over-the-counter drugs.

It was a matter of one episode opening out into another. After the heartburn and stomach pains were over, then came the psychological problems. I went through a period of anxiety or if you like, depression. It was a  time I had lost the support I was receiving from the one sponsoring me for my education.

My poor  parents could hardly afford to raise fees for my high school and do the same for my younger siblings. I was left confused and helpless, not knowing what to do next. I was in a dilemma and as fate would have it, I dropped out of school. I was 16 years old, then.

As young as I was, I joined the labor market doing all sorts of odd jobs you can imagine of to survive.  My struggles put me in constant worries. I suffered sleepless nights, had headaches and unusual tiredness. Life was difficult and becoming meaningless by the day. I had to see a psychiatrist who diagnosed me with anxiety. For the next so many months, I spent I spent taking antidepressants, I had very little time and very little to do because the drugs (valium and others) would induce drowsiness that made it impossible for me to be active as before. I needed more time to rest and with the counselling support I got from the healthcare givers, I got better.             

Fast forward in 1997, what I went through had never happened before to me. For as long as I live, I will never forget the turns and twists that my health was subjected to, that changed my life forever. For worse, not for better. 

It all started as if it was just another issue to be worried about. One evening, I suddenly realized in the middle of my eating that I was having trouble with swallowing which brought about a dramatic stop to what I was doing. It was the very first time to experience such a thing.                       

GASPING FOR AIR

Unbeknownst to me, it marked the beginning of a new and long medical journey. I did not think much about it until the problem became a recurring illness. I reckon at one point, I almost choked to death. I was eating normally but this time round the problem struck with a different manifestation. I thought that was my day.  As I  swallowed, the food got stuck in the throat, left me gasping for air until quite luckily, I managed to mysteriously clear down the food out of the way of the windpipe. I just realized it was a problem so real to ignore.

I went to the hospital and was given some drugs which did not help much. It required more investigations to get to the root of the problem. Meanwhile, for fear of choking, I took the precaution of taking baby steps whenever I was swallowing. I resigned to consuming fluids and avoided all solid foods. But the resolve did not help matters either. While at it the problem of swallowing degenerated into one of a very serious nature. I could no longer swallow any more!     

For the next one week or so, I was literally living like someone who was fasting. One would have been forgiven for thinking that I was under compulsory isolation because I did not move out of my house to meet with people. Worst of all, I was unable to even drink water. I got dehydrated and lost weight as well.

From the other side of the world, beyond my immediate environment, came all manner of versions of stories about me. Behind my back, people would talk of anything they knew about myself and even what they were not sure of about the state of my health.

IS IT CANCER? IS IT HIV/AIDS?

Since the problem of swallowing with difficulty was a strange illness to many in this part of the world, speculations were rife that I had been bewitched. Some thought it was a curse, for being a non-smoker that I am, I should not have suffered ‘cancer’. Yet others were so sure that I was a victim of HIV/AIDS. Oh, my goodness the world is crazy! I myself had also my personal fears. Just like those who thought I had cancer, I  too shared a similar thought with them – but in silence.

The only difference between them and me was their cancer disease was on their lips because they could not hide it. Mine was hidden somewhere in my head.   I could not rule out that possibility the way I could with HIV/AIDS case. It was an infectious rumour that shook me to the core. Losing my life to cancer would have been the worst nightmare to my loved ones and the mere thought of it gave me goosebumps. Cancer was and is still a dreaded disease that kills in silence, perhaps just like Covid-19 is a world scare today.

Although I had an underlying condition, I went to the hospital complaining of difficulty in swallowing. I was admitted for about three weeks and underwent tests for throat and stomach infections (Barium swallow test and Endoscopy). I spent a day or two of a tense moment as I lay in my hospital bed waiting for the tests results. ‘Could it be cancer? Could it be any other terrifying disease?’ I kept asking myself.

Fortunately, claims by the rumor mongers were never to see the light of  day. Both tests did not show any symptoms of cancer nor HIV/AIDS. I received treatment for ulcers and heartburn and other gastro infections.

GASTROINTENSTINAL REFLUX DISEASE (GERD)

I later came to learn that what I had was known as Gastrointestinal Reflux Disease (GERD) . It is an extremely uncomfortable experience having to deal with acid from the stomach climbing up through the esophagus to choke you on its arrival in the throat, which happens mostly at night when someone is asleep. It feels like you are dying because you actually have to clear the throat to be  able to breathe. The condition is managed by use of antacids and antibiotics.

But still, the problem is far from over. I am told while I am asleep facing up, there is a funny sound I make like of someone in trouble with breathing. A stomach pain ensues if I apply physical effort like lifting heavy weights, or indeed working in the farm which is a health risk. This condition renders me unproductive and inactive in many ways.

The surprising thing though is that I don’t feel any pain at all in the throat or while swallowing, other than the feeling  of stiffness around it. Yet for any food to pass down through it to the stomach, it has to be in a way forced.

Pain in the stomach suggest all is not well with me and swallowing with difficulty comes with its own bag of other challenges. You can imagine that I can only  take drugs by having to chew it or like in the case of a capsule emptying its contents to be able to swallow it as prescribed by the caregiver.

FINANCIAL BURDEN

I have had to live with these problems for more than two decades. I could not in my wildest imagination think that my life would end up like this. I was forced to take an early retirement due to health issues in 2017. That was well before my time to hang up my gloves as a teacher was due. And one of the reasons why I had to quit, had to do with my feeding problem. I could not work on an empty stomach.

Even though I am not supposed to be doing manual tasks, I sometimes go against the grain to make ends meet because I simply can’t afford to hire a farmhand, which takes a toll on my health. To survive on a pensioner’s budget is not easy, and trying to earn some extra coins is not easy, either. I have to wear many hats to look for and get alternative sources of income, however little. The fact that I have three kids to raise and school fees to pay is an additional burden on my small monthly income.   The medications that I can not do without are often highly priced and may not  always be available through government-run hospital pharmacies which compels me to dig deep into my finances leaving me with empty pockets.               

ALTERNATIVE FOODS

To make do with my health requirements, I am constantly on the lookout for alternative foods which I must say are not easy to come by, in terms of buying. I just can not eat whatever comes my way. I am selective in the food I  consume.

Due to my stomach ulcers and GERD condition, I am particularly required to keep off all acid producing and stomach irritating foods. There is a whole list of foods to avoid. Talk of sour milk, kales, fruits with a bitter taste, beans, and spices generally, to mention but a feel.          

SOCIAL AVOIDANCE

Oftentimes, I find myself avoiding people lest I be invited to a meal with them. You see, it is such a time you become exposed. How many people would understand my plight of illness if I refuse an act of generosity like an offer for food? Yet I am not sure if it is safe for me to swallow anything.

Nobody worth their salt would like their health condition to be a topic of discussion or to be broadcast to all and sundry. That is what I try to prevent by scaling down my interactions with people and thus affecting my social life, negatively.          

I wish to say that the beauty of life is that as much as there are people without any concern for others, there are many more people in this world who relate well with the suffering of others as to be willing to help where possible to make their lives better.     

George Ngigi

Thank you!

Clinical Trial Hero would like to thank George for taking the time to share his story.

Through stories we create connection and understanding – in relation to others, but also within ourselves. Clinical Trial Hero would like to share your story about your chronic illness in order to help others who may have only recently been diagnosed or simply need to know that they aren’t alone.

If you would like to share your story, please send an email to sandileanneserr@gmail.com with the subject line “My Story”. You are not alone. We get it!

Sign up for updates on more stories and upcoming clinical trials near you.