A Cup of Coffee – I was diagnosed with Ehlers-Danlos Syndrome

Welcome back! Last week, we chatted about depression and loss around the holidays. Tough subject. If you missed that blog and would like to catch up, click HERE.

This week we get a real treat! The Northwest Osteopathic Medical Foundation is always looking for guest bloggers, and this week we are pleased to present Kelsey Van Dyke. Kelsey is going to tell us about her own personal journey to find health after being diagnosed with a rare genetic disorder, and how she got there. Please join us in welcoming her.

I was diagnosed with Ehlers-Danlos Syndrome, by Kelsey Van Dyke

When I first discovered yoga it was love at first savasana (resting pose for those who aren’t familiar). My first few classes were amazing. I returned every day for months. It became an obsession, a daily routine, and my favorite hobby. 

Being athletic I found this new and interesting workout exciting.  Plus I was really good at it! I’m naturally flexible and limber and bending myself like a pretzel was nothing. I constantly amazed myself and others how easily I bent, grabbed, and placed myself in the deepest and furthest position of each pose, pushing myself to hold poses longer and stretch further. This is how I did everything.  Pushing limits, perfection, overachieving.  I was growing and accomplishing a lot in a short time… or so I thought. 

The reality is that I was overextending, overdoing, and not taking the time to build proper strength and alignment. This reality didn’t hit me until I got a hip injury at work that put my ability to do yoga to a complete stop for 9 months. Losing my mobility virtually overnight was a wake-up call I never saw coming.  I had no choice but to accept that my joint stability and joint health was at risk now and needed to be addressed. 

This is my story of how one hip and alignment injury took me from an abled bodied and athletic person to someone who was limited, immobile, and unable to walk.  This injury and other joint issues brought me a new diagnosis and I learned about a disability called Ehlers-Danlos Syndrome. I had never heard of this disability and being diagnosed now offered little answers, little hope, and no guarantees. 

Photo and list, courtesy of Patient’s Rising: https://patientsrising.org/eds/

It was the fall of 2019 and life was good. I had started a new job earlier in the year that I really loved. I had extra time on my hands and was recommitting to my yoga training. Over the last year, I had felt like my progress was declining. I wasn’t able to do the poses at the level I was used to. I had also been experiencing strange exhaustion, and very intense joint and back pain. I ignored the pain and made up my mind that more yoga was the answer. So that’s what I did every day, more yoga. It wasn’t working, more yoga was more disappointment, more pain, and no relief. I couldn’t move from one simple pose to the next without joints making loud popping noises and aching. I found no relief, I was suffering, and I didn’t know what to do.

Popping has always been pretty common in my body, and honestly, my joints pop all day and most of the time it’s not a problem for me. The noises and sharp pain that shot through my joints during this time however was not like anything I had ever felt before. At the same time, I was experiencing all of this during my yoga practice.  I was also having my joints failing me during my normal and daily activities. I felt instability and limited mobility over my entire body. My ankles, my knees, my back, my shoulders, my wrist, my elbow, and even my fingers. All started giving out at once. I began to injure myself every day, throwing out my shoulder, spraining my back from picking up normal and average size items across the room, rolling my ankles, and overextending my knees with every movement. I had difficulties with walking across the room, struggling with muscle spasms, and no muscle strength. To top it all off I was exhausted and the fatigue I felt from all of this was causing as many problems as the pain

This all led up to the hip injury I mentioned earlier. It happened after working too many days in a row and not having any time off. I ripped my psoas muscle and shortly after that strained the muscles around my SI joint. My left hip was completely unstable as was my entire pelvis. I was so confused and when I went to the doctor to be advised on my hip he sent me to physical therapy and diagnosed me with hEDS and hypermobile joint syndrome.                    

My diagnoses gave me answers to my debilitating joint pain and so many of the other health issues I had over my life. It also came with some bad news. This wasn’t going to go away overnight. Strengthening my muscles was the best route to protect my weak and unstable joints but there was no cure to this diagnosis. Only therapy and time would tell what my future would look like. I would hopefully improve.  However, I also needed to be prepared that this might be the new normal. My condition could remain the same or even get worse as I aged.

I had new limitations. No stretching. When I felt pain and instability I was to limit or stop the activity completely. Ignoring the pain would cause worse injuries, complications, and permanent joint damage. No heavy lifting, no running, no contact sports or activities that were hard on joints. Some of these activities would get easier with therapy and time, some were permanent changes. 

To get through my daily activities and for working out it was recommended I use supports and compression straps to make up for the loose and weak ligaments and tendons. Physical therapy was a must and I needed to keep up on moving my body in healthy ways. To my excitement, after about 7 months, I started healing and making progress with my strength. I was allowed to start yoga again. This was a slow progression and my practice now looked different than anything I had done in the past. I moved like a snail, so slow, and most poses I still could not manage. Inversions impossible, balancing, and even workouts like squats required a wall or something for support.  

After countless tests, monitoring my progress with physical therapy, looking at my long history of medical issues, dealing with more strains, sprains, and dislocations, my doctors advised that my progress would be slow. Protecting my joints and staying safe within my limitations was the best way to avoid injuries. They were optimistic and hopeful that my pain and abilities would improve with therapy. They couldn’t make any guarantees regarding how much mobility or strength I would regain, but were confident with therapy I would return to many activities, and that was the main goal. It took nine months of rest and meeting with a physical therapist every week before the healing took effect.

 I finally did improve, and the diagnosis and my chronic pain aren’t taking me away from my life and all that I love as it did a year ago. I still have moments and injuries, and I still take daily precautions to keep my joints safe that I never use to have to. I still follow the therapy advice, ibuprofen routine, and ice or heat my joints and muscles often. But I can walk without pain and leg support. I’m lifting and accomplishing more, my pain is more manageable, and my injuries have dropped in numbers. I went months without a subluxation, and my sprains dropped from 5-8 a week to about 4 a month. I could start to live my life again. 

I have been accepted the reality that my mobility and pain management is not guaranteed every day, so I enjoy the movements I do have. Yes, some days I wake up with limited mobility, limited strength, and sometimes unmanageable pain. Living in denial and trying to ignore this pain did nothing for me. Having the awareness of my diagnosis, and living within my limitations, has improved my quality of life. I realized this last year my healing required a lot of support and community outreach that I had never thought necessary and I couldn’t have begun improving if it wasn’t for that support. For my improvement, I am deeply grateful to all my doctors and nurses, my support groups for their love and advice, my boyfriend who helps me with physical therapy, and waking up early to wrap my injuries every day before I go to work.

The reason I wanted to share my story is to bring awareness about how delicate and precious our health is, and that everyone has the possibility of becoming disabled, sick or injured. One day you can have all your health and abilities, and the next day they can be gone in a blink of an eye. Being ignorant about this disability didn’t save me from it impacting my life. Trying to ignore the pain didn’t work, and yoga alone didn’t fix it. I had to seek help. I had to reach out to professionals to get the answers I needed. I had to change my diet, my lifestyle, and my work.  Expensive monitoring and testing were required. I had to relearn how to walk and rebuild strength from step one. It was a full body and mind transition, and it’s one I will be navigating and learning about for the rest of my life.

 For those who have had a similar diagnosis, injuries, or experiences I hope this post helps you realize that you’re not alone. You deserve a life where you can find help and support. One report from the CDC shows 20% of adults experience chronic pain, 8% of these report high impact chronic pain. I encourage anyone who experiences these forms of pain to seek support from health care professionals, your community, and your family. Undiagnosed pain can lead to other issues such as depression or drug abuse. You are not alone, and dealing with this pain already makes you stronger than you know.  Don’t feel ashamed of seeking help and support. The more we are educated on these types of disabilities and health issues, the more we can help others and lift the health of our community as a whole. 

Note from the NWOMF: For more information and support regarding Ehlers-Danlos Syndrome, click on this link for The Ehlers Danios Society help page: https://www.ehlers-danlos.com/

Kelsey Van Dyke was raised in the Northwest and has traveled and lived down the entire West Coast over the last decade. She loves the wide range of nature and people that this side of the country has to offer. Some of her favorite things are to enjoy nature and spend her time with loved ones. She moved to Portland 3 years ago with her boyfriend and her cat, and they have been so happy and are completely in love with the City of Roses. She started yoga training 7 years ago and that is when her health and wellness journey began. She advocates for healthy living and hopes to help spread the wealth of health any chance she can. Her goal is to get more education, more awareness, and grow her connections with others in the health community. “Together we go further”.

A Holiday Note from Linda Tate:

I personally love this time of year. Four years ago, I established a program in our small town called, “Letters to Santa”. I place mailboxes in small business’, children write a letter to Santa, I handwrite a letter in return, and send along a small gift “from the elves“.

Every year, there are letters that touch my heart. OK, letters that make me ugly cry. Never many, but at least one or two.

In years past, I would get the request to “bring grandma back from Heaven” or “All I want is for my mommy’s cancer to go away”. Tough letters to respond to, no doubt, but not out of the ordinary in the realm of things children worry about.

Then along came 2020.

Questions such as, “Do you think I’m going to die?“, “I’m scared you will get COVID, Santa, and I love you!”, “I just want Trump/Biden to win the election (so my parents will stop yelling at the TV set)“, and the most telling letters of all, hopeless, despondent, “I don’t care what I get…I don’t feel very Christmassy this year“.

Let’s just sit and let those words sink in for a minute, shall we?

Our children are suffering and their letters reflect that suffering. Notes of admission such as “Santa, I’ve been bad but I’m so bored” and “I miss my friends, Santa, so I was a little bit naughty this year” broke my heart.

I’m not naive. I understand this has been hard on all of us. Our own mental health is being tested to the max. What I’m about to say may not make me the most popular kid in the room, but say it I must.

Stop making your children carry your burdens. Say that again slowly.

Their childhoods are being strained in a way no other generation has had to face. Even during times of war, as in WWII, or the Great Depression, I would hear stories that told of “making the best of what we had” and “I may not have received a present…we were too poor for that…but my dad read a chapter from a favorite book every night before we fell asleep and mama made the best dinner by taking a slice of bread and dipping it in bacon fat before she toasted it in a frying pan“. The parents attempted to lift the spirits of the children in the home, making sure they didn’t hear the grown-ups talk.

We’re there, my friends. We need to go back to protecting the children. I’m not insensitive to loss of work. Loss of income. No way to pay the bills, and fear of getting sick, or feeling as if we aren’t getting all the information about an illness. We may not have all the answers to the questions our wee ones ask us, but the one thing we still have to give our children is hope and our time.

Instead, they are witnessing anger, frustration, and hopelessness, and worse yet, we are involving them in those feelings. Exposing them to our rage. They aren’t ready for that. They are just babies.

I’m going to close with a response I sent back to a letter that really tore me up. This child was sad and worried that nobody loved anyone else anymore. “All the grown-ups are mad“, she wrote. She was 12 years old.

“My dearest Madeleine, Thank you for your letter, Dear Heart. I am so sorry that you are sad and worried. While I can’t make other people understand what love is, I can say that you, my dear child, are the definition of the word. You are thoughtful, loving, and very kind. You are Santa’s hope for the world. As long as there are children like yourself, love will always prevail, and we will all be okay when this is over. The world needs you, Maddy. So hang in there and remember how very important you are and that Santa sees you, and loves you, very, very much”.

I hope my words were enough.

May you and yours enjoy the essence of the holidays and remember to stay in the moment, offering each other grace, and offering the children of this world a reason to believe.

~ Linda Tate