Spring, Ehlers Danlos, and Adventures Ahead

Hey all!

First, let me apologize for being gone for a bit. I swear, it’s the same thing every exam season. I just don’t have the time for anything extra. I work, I try to sleep and eat, and I work some more. When I finally get the time to return to blogging, it feels like such a treat! To be honest, I don’t have the time today, but I’m going to make time anyway. I have to teach in an hour and I’m studying for a physical geography exam, but holy goldfish do I need to write.

(Holy goldfish? I don’t know. It just happened)

My last few posts have been depressing as heck. Today, I get to change that. I’m doing well! Spring is in full bloom here in Kingston, Ontario. This means that on Monday it’ll be gloriously sunny and top 60F, and on Tuesday it’ll be sleeting. C’est la vie. On the sunny days, I’ve been dressing up once more in my elven attire and busking downtown. I’d forgotten how much I enjoy fiddling in downtown Kingston. My first day back was the best. Dozens of people recognized me from last summer and said hello, waved, or shouted at me from car windows or across the street. People were thrilled to see me, which obviously thrilled me in return. Plus, I got to explain to a tiny human that my hair is naturally blue because I ate too many blueberries as a small child. That was awesome.

Glorious, glorious spring weather. So warm, the ice cream shops opened.

I am, of course, neck deep in exams and school assignments, with dozens behind me and just two more to go. I’ll be finished by next Friday. But in the meantime, I’ve been up to plenty of other things as well.

  • Selling all my shtuff. I’m leaving Canada in TWO WEEKS. *cue hyperventilating* And so I’m getting rid of everything that’s not nailed down. My random Bavarian dress. My vintage lace wedding gown. The Gamecube that’s been sitting unused under my bed for three months. Half my wardrobe. Books. A printer. Anything someone will pay me for. It’s wild how stuff accrues when you’re in one place. I like to think I live a fairly minimalist lifestyle, but even so. I love weird clothes, and those especially pile up.
  • Packing what I can’t sell. I’m only taking a backpack and a fiddle to Guatemala. The rest most be sold or stored. I can’t bring myself to get rid of my collection of fairy clothes, paintings, sewing machine, or the other three instruments.
  • Freaking out about my terrible Spanish skills. I wanted to practice before I left, but I really haven’t had time.
  • Coordinating a trip to Indiana to see family once more before I take off.
  • STILL doing little nitpicky things to finalize the exchange. I AM going, but there’s still paperwork to send in.
  • Learning about my EDS. More about this below.

I’ve received so many comments about my diagnosis, encouraging me to keep my chin up and find my new normal. Thank you all! I am making progress and am feeling ever more positive about the future. Here’s what’s up:

Last time I posted, I was just TWO DAYS post-diagnosis. I had received my official diagnosis in my physical therapy appointment and had been ushered off for an MRI the very next day. I wrote about it all the day after the MRI. Since then, I’ve had time to get my MRI results back, learn more, and wrap my head around the situation.

Learning about EDS is like using a popcorn popper for the first time… surprising and messy.

The MRI gave a result none of us expected. My doctors were completely astonished to discover that I have osteoarthritis on top of the EDS. I didn’t understand at first. I thought they must have made a mistake. Isn’t osteoarthritis something you get as an older person? I’d never heard of a young adult having it. Apparently I’m just riddled with it to the point that it’s unmistakable. It’s showing up all over the place. I immediately went to EDS – Zebras Need Zebras to ask for second opinions. ZNZ is this awesome Facebook community of people with EDS. They’ve been far more useful than my doctors have, to be honest. One of the struggles with EDS is that it’s quite rare, so very few physicians really know how to deal with it or what to expect. As it turns out, osteoarthritis is common in people with EDS. Furthermore, EDS usually comes with a dozen other conditions. Fun, fun. It seems that you never *just* have EDS. You’ll always have at least a few other issues tagging along. We’ll see what else pops up as I continue to learn more!

I have been overwhelmed by the sheer amount of information out there. Quite a bit of it is conflicting. If you ever want to teach a kid critical thinking or research skills, ask them to find accurate information about EDS.

Shoutout to this guy, who’s been amazing to me through this rough time.

I’ve changed the way I eat. I’ve been careful about staying hydrated. Green tea is rocking my world. I’m focusing almost entirely on fruits and veggies. I’m eating tons of beets and sweet potatoes. When I feel like eating a candy bar, I put together a fruit bowl instead. I’m still making sure I get enough protein and carbs every day, but I’ve already noticed a tremendous difference in how I feel just by focusing on fruit and vegetable intake!

I’m also working out for the first time in my life. I’ve never worried about it before. I’ve always been very active and figured that biking, walking, swimming, and sailing would more than make up for my lack of a gym membership. But my physical therapist and EDS friends showed me that certain specific muscle areas needed work. I’ve been doing those exercises every day.

Between the healthy eating and the exercise, my body feels almost back to normal!

The pain in my joints has decreased rapidly, which I’m assuming has to do with my new way of eating. The stairs are getting easier again, day by day. And I’m not dislocating as often. It’s fantastic! My hope is that if I continue to change my lifestyle to encourage my body towards healing, I will be able to avoid further issues, regain mobility, and go on adventuring as I always have. So far, so good! I know I’ll live with this forever and will never really be cured. But if I can LIVE with it instead of just surviving with it, I’ll be grateful for every single day and make the most of each adventure.

Now that exams are nearly over, you’ll be hearing from me more regularly. Stay tuned!

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