A lot of things have happened since my last post.
I've celebrated 1 year since my hysterectomy, gotten a year older, got FreeWheel attachment for my wheelchair, been on a camp for young people with physical disabilities, been asked to join the board of my regional youth disability organization (and accepted), working on some projects with the organization, coming up with new ideas for events and projects, looking into the possibilities to arrange some wheelchair technique school for friends with Ehlers-Danlos Syndrome as we need to save our joints, I'm also trying to not overdo things even though I tend to overdo things all the time.
I'm still fighting for the right medical care. I have good pain management and bracing and a good wheelchair, but that's about it. I'm not getting proper testing or treatment for my neck, I haven't had my heart checked, doctors here don't even know occult tethered cord syndrome which I may have, I'm having some worsening issues when it comes to my balance when standing and legs just giving way plus other issues that probably comes from my neck and/or spine.
I've come to the realization too that I'm probably too stubborn when it comes to walking. The week I was at the camp for young people with disability, I used my wheelchair all the time except for when I was inside the hotel room and just going between the bed and bathroom, but other than that I was in it all the time, even when getting a cup of coffee. I needed no help to get coffee or take a tray. I could have gotten up and walked to get coffee or carry the tray, but I choose to sit because it felt safest. And that week, I actually felt better than I normally do and it can't just be because I had a lot of fun! I should have been totally shattered every day, but I managed to almost all of the activities we tried and without suffering too much afterwards! I feel worse after walking or standing for a few minutes, than I did after a whole day of being in the wheelchair and listening to motivational talks or playing wheelchair sports (Wheelchair basketball is SO MUCH FUN!)
But back to other things before I go to sleep.
My neck... Seeing the radiologist that looked at my images was incompetent, I'm getting help from the zebra community to get some answers as many have gotten really good at reading images. Apparently I have retroflexed odontoid, and what seems to be Chiari malformation. Someone else has mentioned some signs of instability.
Thanks to those people who are able to read images, I know I have to continue the search for a competent doctor and not just blindly trust what the first radiologist said "nothing except for a straightened lordosis of the cervical spine" for my neck MRI.
Seeing what Ehlers-Danlos Syndrome does to me, I'll be forever grateful that a friend told me about four years ago to read up on Ehlers-Danlos Syndrome when my symptoms first began to escalate rapidly. Had it not been for her, maybe I would still have been undiagnosed and not knowing what the hell is going on with my body!
Now I kinda know what's going on, or well, at least I know why in a way. And I can deal with things as they happen instead of just wondering why it does.
Feels like this post is all over the place, but I'm tired, and just wanted to give a brief update on things.
