Physical Update: Ehlers Danlos Syndrome

Hello, friends.

First, let me say THANK YOU so much for all of your kind words and messages. I posted “My Body Broke My Heart,” went to sleep, and woke up the next day to dozens of messages on FB, comments on here, and emails from you all. I may or may not have cried a little. Happy tears, this time. I am so incredibly blessed to have this international community of friends, family, and readers cheering me on from around the world. Your contacts, knowledge, and words of encouragement have been greatly appreciated!

I’m in a much better frame of mind already. Something about finally “writing it out” and hitting publish sparked a turning point. My pity-party days are behind me, for now. I’m on to seeking out solutions and working towards a new normal. When I woke up on Sunday, Gramps had me looking over his handmade walking sticks and thinking about what kind might work best for me. I’d like one of the ones with a rapier inside, but airport security could put a stop to that idea. Oh well. If I do end up with a powerful wizard staff of some kind, I’m going to have to learn to fight with it. How cool would that be?

My first physical therapy appointment took place on Thursday. It went well, I think. I’ve been officially diagnosed with type 3 Ehlers Danlos syndrome, which sucks, but at least I have a name for it now. The therapist helped me to learn a few different exercises which could help me to strengthen certain muscles. The idea is that getting stronger will compensate for my stretchy ligaments and hold my joints in place. I’m feeling hopeful about this. It feels good to have some level of control over the healing process.

The process of learning the exercises was a bit embarrassing and uncomfortable. There’s a muscle in my hip that is extremely weak, we’ve discovered. I almost never use it. Putting it to work for the first time felt unnatural. And also, I can’t sit up at a 90 degree angle with my legs straight out in front of me. It’s not for lack of trying! Sometimes I’ll spend months practicing and trying to loosen up my hamstrings, but even when I get them loosened up, I can’t physically bend forwards. It’s a very sensitive topic for me. I’m incredibly embarrassed by it, for whatever reason. When the therapist saw that it wasn’t within my range of movement and I explained that I truly have worked on it without much improvement, she was quite worried, just as the specialist doctor had been. The MRI results should provide some clarity.

One other thing, the fun part of the appointment: I was fitted with a brace to restrict my body to a normal range of motion. Holy cow, people! You guys can barely move! It was incredibly weird for me to essentially be lacking 50% of my usual range of motion. I don’t know that I want to be normal. The brace is not something that I took home with me. I’d rather strengthen my body and heal naturally than rely on a brace for the rest of my life.

Finally, I had my MRI yesterday. After a $20 taxi ride that made me 5 minutes late, I arrived at the office and was quickly led to a changing room. I came out looking like a Barbie doll with funky short hair in a homemade “dress”.

Ugly selfie. Still trying to figure out how to take you on this adventure with me.

Then it was off to the machine. Such a fascinating piece of technology! The nurse was kind enough to take a few extra moments to explain the science behind it, which blew my mind. Essentially, you’re entering a giant magnet. These magnets are seriously powerful, capable of creating a magnetic field of up to 20,000 gauss. For perspective, the Earth’s magnetic field measures at 0.5 gauss, so we’re talking some serious power here. The components of the machine are quite complicated, but basically it works by lining up the hydrogen atoms in your body in the direction of the magnetic field created by the machine. Half of the atoms will point towards your head, the other half towards your feet, essentially cancelling out on the image. There are always odd ones out, and they’re what show up in the image. When the machine starts scanning, it applies a radio frequency pulse to a specific part of your body, which affects the “odd ones out,” which is captured in the image. It’s really far more complex than that, and I found a website where you can learn all about it, if you’d like: How MRI Works. Cool, right?

Alright, back to work. Today I’m relaxing and working out my plans to visit Indiana, Guatemala, and the Netherlands. Enjoy your weekend!

 

 

13 Comment

  1. Hannah! You are so beautiful and I wish you so much support, love and care on your journey! And health! I wish you health too! Also, I see you are planning a trip to the Netherlands… Tell me more! That’s my main spot at the moment and it would be awesome to see you again :)

    1. I’m doing an exchange to the University of Groningen for a year starting next August. :)

      1. That sounds awesome! What will you be studying?

  2. Oh, I see that my name doesn’t show. It’s me Nathalie, from the Hero Round Table in Flint, remember? I sat next to you and gave you an encouragement mint before you went on stage to give your wonderful talk.

    1. Yes! I definitely remember! It would be very cool to get to meet up again. Why are you in the Netherlands at the moment? I hope it works out.

      1. I am here because I have some projects I am trying to manifest into reality. Traveling is wonderfully inspiring and I have accumulated a great many ideas for what our world could potentially look like for the better. Traveling and living in survival mode is also tiring and not the best environment for me when I am trying to get work done and create. So I decided to focus my energy on manifesting for a while and here in the Netherlands I have access to more resources and people to make things happen. Let’s stay in touch!

  3. Andi says: Reply

    I’m sorry that you’re having to go through all of this, but am happy that you have a diagnosis as it means you can start working your way toward being stronger and being able to take care of yourself based on your diagnosis. When my sister was diagnosed with EDS, she was somewhat relieved, as then she knew the reason behind her sudden inability to do all the things she used to be able to do without issue. (She is extremely athletic.) She’s never been fitted with a brace, but she has learned strengthening techniques to hold her joints in place.

    Anywho, I am happy for you in that you have a diagnosis. I told my sister and parents about your symptoms and that EDS had initially been ruled out, but have updated them after reading your blog. My sister is happy for you that you have your explanation.

    1. Thanks! I’m glad to have an official diagnosis, at least. Apparently it’s rather common. I feel like an instant community of other people with EDS sprang up around me overnight! It’s great to see that most people do take charge of their bodies once again and get back to a place where they can do normal daily life. Much thanks to you and your family for the kind thoughts!

  4. Anonymous says: Reply

    Hi Hannah

    I’m sorry your body broke your heart. They can do that to us sometimes, but from experience the journey we take to work around that is never dull. Hard sometimes but so worth it for the healing at the end.

    I found your blog through your family blog. I am currently rooted but experiencing an itch to travel long term and it is some very inspirational reading. Thank you for sharing your perspective. I have really enjoyed reading your writing.

    As a small comfort for your broken body I can offer you some travel ideas for Scotland and St Andrews if you are still interested in visiting. I went to uni there and lived on both coasts. There is some excellent scuba diving there believe it or not.

    Happy travel planning!

    Steph

    1. Hi Steph. I’d love to hear your travel ideas! I’ve heard of diving off the coast with basking sharks and that really caught my imagination. Do let me know what else I should check out. Thanks!

  5. Paula says: Reply

    Hi Hannah,
    It’s ridiculous o’clock over here in NZ, but something made me check your blog. I’m sad and relieved for you that you have a diagnosis. I’m a zebra too – we found out last year. EDS explains a lot about a lot, huh? Know that there is always hope of better function, and that the best time ever in history to have a hEDS diagnosis is right now. (In fact, the classification for EDS has just been updated. See http://www.ehlers-danlos.com.)
    This is your journey, but if anything I have learned could help you, I’d be honoured to share.
    Your mind has always been your strongest asset. To the extent possible with hEDS…you’ve got this. x

    1. Hello, fellow zebra! I’ve been amazed at the community and support networks that so quickly gathered me into their folds. It DOES explain a lot. It’s all so connected. The more I learn, the more I realize how many of these things I’ve already been dealing with for years. Wild. I’m now on a FB group called EDS – Zebras Need Zebras, and am learning a great deal from them. Thanks for commenting!

  6. MichelleNeale says: Reply

    Hi! I just found your blog when Ditching Suburbia shared your wonderful “10 Things…” essay. I got the sarcasm :) I’ve been catching up and your last post was wonderfully written and heartbreaking. What a burden to have been carrying around such pain and physical limitations for so long, but also what a testament to your strength. I’m so glad to read that you have a diagnosis and are connected with others who are similarly diagnosed, and hope that the physical therapy and strength training provide long term relief.

    So, I’m particularly interested in your world schooling story because my husband and I are currently traveling full time in an RV around the US with our 8- and 6-year-olds. We sold our house in Los Angeles last summer and the experience has been incredible for all of us, but most of all it’s wonderful to see how much the kids are thriving.

    I’m keeping a blog: https://nealesonwheels.com/ and I also wrote a story for Redbookmag.com about roadschooling you may be interested in: http://www.redbookmag.com/life/mom-kids/a49007/what-its-like-to-roadschool-kids/

    I’m 44 years old, and after a long and fulfilling career in the travel industry and getting to see much of the world, I’m embarking on a new phase of freelance writing and photography, and exploring my home country. Change is good, and travel is the best!

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