Cindi here. Ehlers-Danlos Syndrome (EDS) has taken me down again and quite forcefully this time. It will not win though as my new doctors are already on the case and are working at stabilizing me from the blow. It might be a week or two before I can get back to posting regularly though as I will be spending most of my energy and time trying to deal with the EDS and being there for my kids. Thank-you for your patience and understanding. I will start posting again as soon as I can. I still have pictures to share from last Saturday when we got to meet a local Autism group and other families. 😉
Ok, there is definitely something wrong with my shoulder. I shocked a person at Pizza Hut too earlier this evening. lol
Her sister is a good friend of mine and we know each other through that connection so we were chatting and I told her about the shoulder mystery and she was curious so I showed her. She said that she could literally see the ball of the joint moving around all over the place under the skin and once she said that, I tried to watch it myself again and can kind of see it. Still, this is all “normal” for me so I am still getting used to the idea that it’s not supposed to do what it’s doing. lol
It has been a few days since I was last able to post. A part of that is due to trying to get things done on this end, and another part is because I have been so tired lately. I do have a big update to share though. I had my follow up appointment with the surgeon and got moved from my giant splint and ice machine to a cast. I was going to get rainbow, but then I found out what they would have to go through in order to make a rainbow one so I settled for just pink instead. lol When I got back from my appointment, my friend helped pick up my new meds and some markers and then her, her kids, and my sons all decorated my cast for me. I’m loving it for sure. ^_^ Especially all the kid drawings. I am definitely rocking the “mommy cast” now as I like to call it. 🙂
I have to admit that being in a cast is still something I am trying to get used to, even after being in that cast like splint for 2 and a half weeks prior to this. I also am a bit nervous as to how well this recovery process is really going when I got moved to a cast even though my injury and surgery sites were both swollen pretty bad. I also have lost movement of my big toe after a week of struggling with what felt like quick and random jolts of electricity hitting my toes. The part that concerns me the most though was the response I received when I asked if moving to a cast meant that everything was healing well so far. I was told that they don’t know if I am doing well or not. Yep. When I failed to hide my startled reaction to that response, I was met with a few comments about how they can’t know how my bones and ligaments are doing or if they are healing correctly or not because (in their own words) “it’s not like we can see inside your foot”. Yeah, not exactly something you want to hear coming from the people in charge of making sure everything goes well in spite of your body fighting tooth and nail against that outcome.
For now I am trying my best to just relax though and to trust God to help get me through this one way or another. I have been blessed with some caring friends and neighbor and a church family that has been helping make that a little easier too I will admit. My favorite though so far is the cast decorations. They make me smile every time I see them and it gives me a truly unique cast to show off so to speak when people come to visit. lol 🙂 Below are more pictures of it so you all can see it too.
Ok… I now know why I have been in so much pain lately and why I was struggling so much with my mobility. I fought it a lot thinking that I was starting to become a wimp (I can usually work through the pain and keep going anyway) but after today’s doctor visit I realize just how tough I was still being after all. I have been walking around with my entire spine either dislocated or subluxed! (the latter means half-way dislocated). EVERY JOINT was effected from my pelvis to the base of my head!
Oh and that whole thing about not being able to sit without intense pain and having to have help to be pulled out of my chair to get up sometimes because the pain was so intense? My entire right hip was DISLOCATED and I was walking (rather I’ve been limping actually) around with that for almost 6 months!
Good news is, the doctor there knew about EDS and so he also knew how to help. BETTER news, when he found out how badly I was messed up, he brought in the expert and it turned out to be my old doctor from before my insurance was changed on me. He remembered me too even after all this time. lol : )
As they were working on me though, the comments about my bones and joints slipping around so freely it felt like things floating around in soup was a bit unnerving. As well as the part where they accidentally dislocated my entire ankle while trying to straighten my left leg in order to help the subluxed left hip in hopes of helping the right one settle enough to be put back in place. My EDS has definitely gotten worse. A LOT worse. 😦 It will take about 6 months, but I am getting sent to an EDS specialist in Oklahoma to help get to the bottom of my EDS (what specific type we’re dealing with, how severe it has gotten, where to go from here, etc.) and until then, the doctors I saw today will be bringing me back in on a regular basis again so they can keep putting me back together.
Oh and to add irony into the mix, they got me all lined up right again and set my joints back in place, only for me to walk out and immediately be faced with an overloaded Autistic child. By the time I finally had David settled and okay again, half the work that was done on me all got messed up again. Dealing with severe Autism at the same time as Ehlers-Danlos is definitely no fun and games. 😦
What do you call a weekend that was filled with a mixture of playing in the snow, seeing a good friend, falling on the ice, injuring your ankle so badly you almost lost your foot (circulation and nerves cut off), and finding out that the sore rib you’ve been living with and finally got checked is actually a cracked one and will take at least 2 to 3 more weeks to finish healing?
One of my best weekends ever! lol
I don’t know whether to laugh at that fact or shake my head at myself. I live one crazy life over here that’s for sure. haha : )
I got sick over here and the boys have pulled a couple more all nighters on me. I will post the crochet work as soon as I can. : )
Keep a look out tonight/tomorrow morning (depending on when I can get the boys down enough for me to type 😉 ) I’ve gotten more lessons and have been working more on crochet 😀 Pictures will be included as well as a link to the new project I’ll be attempting soon. 🙂