Day 6 of the EDS blogging challenge asks how EDS has changed my life for the better.
Thinking of all the things that I have said in my previous posts, it is probably hard to imagine EDS having a positive impact on my life but I think that it has in some ways.
Painsomnia can be a “side effect” of anyone with chronic pain but is something that can affect EDS-ers pretty often. Painsomnia is what we call it when a person is…
Day 5 asks how I have adapted to my diagnosis.
Day 4: What I think all EDS-ers to know.
I missed a day. I know I said everyday, but I can explain. With EDS it’s nearly impossible to know what kind of day you are going to have tomorrow, when you go to bed today. You don’t really know until you get up and assess the damage to your body. Yesterday was one of those days where you wake up and immediately think, “can I just go back to sleep and start over?” It is crushing to know that some days leave you unable to do anything. It is a miserable feeling. What does all this have to do with blogging? Well, I want this blog to be possitive. I want to share the good days that I have, enlighten you on the bad days and never post about the terrible days. This is the reason that I decided not to post yesterday because it was not only a rough day on my body but my mind and soul. But I am going to…
Walk it off.
Well this one is another question that is hard to answer. I am currently waiting on the final diagnosis. Sounds weird? It really isn’t. Not for someone with EDS. There are many cases of EDS that do not ever get diagnosed. It is really hard to find a doctor that even understands and/or recognizes the signs for Ehlers Danlos. I have been struggling for years to find the help that I need. I started dislocating my right knee around 12 or 13. I was seen for a reoccurring dislocation of an isolated joint. I was not prepared for what was to come. I had three knee surgeries before I was out of high school. I amazed my doctors, because the surgeries did not hold. Then other joints decided to join the party and dislocate as well. Through all of this I still don’t have a piece of paper that says Ehlers-Danlos.
Currently I am looking to go to a geneticist to give me a formal diagnosis. I have been to many different orthopedics, including the one who wrote the text book on knees. (Cool right?) Well even he told me that it was probably EDS but then he wouldn’t actually diagnose it. I mean how hard is it to write down or type in 20 letters divided by a dash and space. Here I’ll show you EHLERS-DANLOS SYNDROME. But do not get my wrong, I loved Doctor G. He was amazing. I just wish he could have given me the diagnosis I need. Oh well, I know what I have and how to deal with it (for the most part). I also know that the people in my life understand that I struggle and need help sometimes but we can all laugh about the silly things. Im going to end this post with something I said to a friend just last night. D. said that it perfectly described me and we laughed, probably too much.
I am basically a real life Mrs. Potato Head.
This is my world and I enjoy every moment of it.