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How JHS/EDS Affects My Future

Writer's picture: Rebbeca WertzRebbeca Wertz

Managing a chronic illness comes with so many challenges, especially when it comes to what we do for a living. My diagnosis of Joint Hypermobility Syndrome (also known as Ehler's-Danlos Syndrome) at the age of 45 changed everything.


First, I finally had answers about all my comorbidities and how they all connected to JHS/EDS. To be honest, I had a hard time understanding my rheumatologist when he told me my cool party-trick of bending my thumbs and hands in abnormal directions, was related to my migraines, joint pain, bursitis and IBS. How could something like a bendy joint connect all those issues?


I looked into the diagnosis for a week or so, but didn't really dive deep. I still didn't understand how faulty building blocks for collagen could affect me in all these areas. I sat on this for over a year.


And then I broke my ankle on 8/12/24. I broke all 3 bones, a trimalleolar fracture, going down 3 steps I go down everyday in my garage. I've never broken a bone before this. However, I rolled my ankle so many times, suffered light sprains, and could never wear heels very well. Faulty collagen at work barely holding my joints together. I snapped, crackled, and popped my way through life. My feet, fingers, sciatica joint, neck, ankles and hips. I could pop these suckers all day long. Never thought anything of it. Never knew they connected all my other issues.


To be honest, I'm still learning how JHS/EDS affects all the areas I have problems with: IBS, the lining of the gut, the myelin sheath or neurotransmitters for depression, OCD, joint and nerve pain, migraines, fatigue, bursitis, dizziness, and even brain fog or feeling clumsy.


At my last job as a harp specialist, I struggled working part-time and often had to adjust my schedule to work around my migraines. I struggled to lift heavy harps out of their shipping boxes. I had to ask for help when any pedal harps came in to be unboxed. I knew I would not be able to physically keep up with that job and prepared myself to get trained as a chronic pain coach.


As a chronic pain coach, I could work from home at my own pace, my own schedule. I could work around my pain much better. I knew I wouldn't be bringing in much income, however, knowing my limits. I could work with others that I would have so much in common with, putting into practice those things that I learned from my chronic pain coaching program. I even work with my own pain coach. It keeps me working towards something, connected with others, and passionate about relieving suffering and pain. Healing together.


I also have to keep up my CEU's for pain coaching and therapeutic harp. I get to learn about all the up-to-date information in these areas, continuing my education, connection, and purpose with these areas. I am also involved in the National Standards Board for Therapeutic Musicians (NSBTM), learning about what's new in this area and helping to be a supportive pioneer in this movement. Having passion for these areas drives me and gives me purpose. It keeps me up to date and educated and I can use this knowledge to help myself and others.


I do have hope and some tricks up my sleeve. I am trying the Cusack protocol to see if it helps my symptoms. So far, I have noticed some depression lifting with help of a probiotic from Culturelle (part of step 1 from the Cusack protocol). I am always a guinea pig, trying something new to help relieve pain and improve quality of life. As anyone with chronic illness understands, we are always trying something new, because pain is motivating us to do so.


I think breaking my ankle helped me dive deep into really understanding my chronic illness and disability. My scar tissue has crept up my leg and I walk with a limp. This is mostly due to inconsistent physical therapy, which I hope will change with improved insurance procedures. I am also feeling a screw head pop through my skin. I may need hardware removal (another surgery) at some point. I still hold hope of being able to take a walk down the block again one day.


All of this has helped me make the decision to file for disability and obtain a lawyer. I know this will be a long road (2-4 years for approval), but I know it's the best decision I can make for myself, my family, and the future.


If you suffer from chronic pain, illness, JHS/EDS, migraines, or any of those areas mentioned above, I'd love to connect with you. Even if it's just to know you have someone on your side.


With gratitude,


Rebbeca


Joint Hypermobility Syndrome Ehler's Danlos Syndrome Picture of thumb touching wrist
Joint Hypermobility Syndrome/Ehler's Danlos Syndrome





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