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

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!

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

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

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