I haven’t updated here in so long. I don’t know how often people find their way to my little corner of the internet, but I like sharing bits of my life in the hopes that someone else out there can relate or find my words helpful.
On March 4th, 2019 my older sister received her EDS diagnosis. I had brought her with for my annual appointment with my specialist so he could assess her too. EDS can present so differently in each person with it, even in the same family. It took us awhile to put the pieces together to figure out she has it too. The fact that at first I was thought to have Marfan Syndrome had confused things. She isn’t tall and spindly like me, the body type most often associated with Marfan. It wasn’t until I was rediagnosed as having EDS that I went “Oh shit, E might have this too!”. She doesn’t talk to me about it much, aside from asking the occasional question. I think she’s still coming to terms with it. I hope someday we can talk about it together more, but we’ve got time.
On March 5th, 2019 I got to remove my feeding tube after having it for two and a half years. I thought that my gastroenterologist would be the one to take it out, but she was like “Well you have changed out your tube for a fresh one plenty of times, you know how to do it. You can just take it out when you get home tonight and slap a bandage on it until it heals”. So that is exactly what I did. It took almost a month for it to heal completely and stop oozing intestinal gunk, but it did finally heal up. Now it just looks like a have a second bellybutton, so that’s a fun party trick. when I’m feeling whimsical I draw below them to make it into a smiley face.
Towards the end of March my partner/high school sweetheart left me after eight and a half years together. No one wronged anyone else. The passion just wasn’t there anymore. We still care about each other very much and are good friends. Everybody else seems to think that’s weird, but they don’t understand all that we went through together and how we were there for each other during the darkest moments of our lives. That kind of bond doesn’t just go away, it has simply transformed into a friendship instead of a partnership.
This is my first ever breakup though. He was my first love. I’ve had to go through some stuff and figure out what I want to do next in life now that I am no longer going to be planning for the future with him.
The prospect of entering the dating world for the first time as an adult is more than a little daunting. Especially since I am a disabled, queer, young adult. I got together with J when I was 15 and still relatively healthy. I have never had to navigate explaining my illnesses to a potential date before. To me my body and all its ‘eccentricities’ are just my normal now, but to a new person they aren’t. I’m generally pretty confident and don’t care what other people think, but I do find myself pondering which mobility aids to use (if any) when going on a first date. It’s just some internalized bullshit, and I’m getting over it. If someone can’t handle my kickass purple crutches, my colorful collection of canes, or Wanda the Wheelchair that is their problem and I don’t need them in my life. I can view my disability as being an excellent jerkbag detector.
Oh, I also had some issues with my thyroid meds being poorly managed by previous doctors, so getting that sorted out was a whole ordeal, but I have a proper endocrinologist now. I am slowly getting my Hashimoto’s back under control and feeling a little less sluggish. Previous doctors had neglected to check my levels often enough and never told me that the pills should be taken on an empty stomach to be absorbed properly.
I have been devoting a lot of my time and energy to sewing recently. When J moved out my mom let me turn his room into a craft room. I get to leave the sewing machine set up in there all the time so I can sew whenever I want. No more lugging it to the kitchen table and then having to clear it all away every day. Stay tuned for pictures of 50s inspired dresses I am planning to make.
cyberneticrose 