First of all, I would like to apologize for the lack of updates over here. I tend to write most often at my main blog, An Autism Diary, as David is most often my inspiration for writing (whether directly or indirectly). I do however have great news! We made it to Idaho! We had some adventures on the way here and some trials over the last couple of weeks, but things are definitely starting to look up as a whole. 🙂 Starting with better medical care and a doctor who understands Ehlers-Danlos Syndrome! 🙂
I met the new doctor, with kids at my side, on Monday and was so overwhelmed by how much he knew and understood without me having to educate him (such a big difference for me) and at how willing and ready he was to help me. When I asked if he knew of a pediatrician who could help the boys as well, he told me he was a family practitioner and was willing to help my whole family. 🙂 By the time I walked out of that appointment, I was equipped with a doctor who believed me, understood my condition, a script to get my leg brace repaired, and scripts to help take the edge off my pain so I could regain some quality of life. Plus, I have a follow up appointment in just a few weeks, where connections will be made to the specialists I need to manage my symptoms, strengthen my body, and generally help me gain and maintain some stability in this battle that EDS has waged against me.
I really like our new doctor and am beyond grateful for the gift of making it to Idaho so that this partnership could be possible. My days are still full of injuries and struggles common to EDSers, but now I finally am getting the tools needed to fight back, and fight back well. Also, my boys are going to finally have the same and more. They have a fighting chance for a higher quality future than what I was able to give them before. I couldn’t be more grateful for that. 🙂
A BIG thank-you to all my readers and followers who have stayed with this blog through my silence. This site started out as a sister blog to “An Autism Diary”, and is part of the DogForDavid family of sites (which you can now see featured along our side bar on your right 😉 ).
Please check out our different pages (and consider following them to make sure you don’t miss any updates from us), and give a quick read to the new description for this site called, “The Zebra Chronicles” found on the front page. 🙂 Also note, that we have the same address (www.BeyondtheAutism.wordpress.com) but a new name (Stripes and Puzzle Pieces). For more info on DogForDavid as a whole, please check out our main site, www.DogForDavid.com, and while there, check out our FAQs page too for the answers to our most common questions received. 🙂
Thanks everyone! And as always, please feel free to comment and offer feedback. I appreciate hearing from my readers. 🙂
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. 😦
Never could find the paperwork I was needing for today’s appointment, but I was able to get help in contacting the place that originally sent the paperwork and my doctor is working with me and them to get it all filled out as soon as she gets it in her hands. : ) This new doctor I’ve been seeing has been a blessing. I really appreciate her kindness, thoroughness, efficiency, and knowledge. : ) I have to admit I will be happy when this whole paperwork mess is over though. lol I don’t like the added stress.
My best friend and biggest influence here on earth. Grandma Jane : )
The rest of the day has just been spent relaxing and resting as I am trying to bounce back from the lack of sleep. Little Joshua has humorously granted my request from the last post now too. As he has been sleeping for almost the entire evening now. lol Holding out some hope that maybe this will be sleep through the night number 4? Well, I can dream at least right? 😉 lol
I am currently working on some projects too. I love crafts and now that I finally have a lockable room that I could set everything up in, I am getting a lot more chances to work with them again. 😀 My boys tend to put things in their mouths still and are always getting into trouble with my craft supplies if they manage to get their hands on them, so until we moved here to the new place I rarely got to even see my supplies, let alone work with them all again.
The quilt I made with Grandma Jane
My current projects include some fundraiser bracelets that have been ordered, random graphics/designs here and there, and my memory boxes (a personal craft of mine that I started making around 8 to 9 years ago 🙂 ). I have also made a quilt once with my Grandma Jane that has become extremely special to me as it was the last craft we ever got to do with each other before she passed on. My next big project I want to start is actually a t-shirt quilt, using some of the skills she taught me and some old favorites from the boys’ baby and toddler clothes. : ) I saw the idea on-line once and thought it was a great way to keep the memories alive and let the boys have their favorites back again. : ) I have made special “mommy blankets” as they came to be called (aka baby blankets that I sewed up for them during my pregnancies) as well for each son when they were born, but David’s tore in an unfortunate incident and in a way I am not yet skilled enough to know how to repair and Joshua’s sadly got lost when we ended up having to move around a lot a few years ago during some hard times in our lives that I tend not to like thinking about… I still am holding out some hope that Joshua’s will be found again though someday.
Do any of you have a favorite hobby? I would love to hear about it. : )
As I was trying to find pictures for this post, Mr. Night Owl, aka Joshua, has officially woken up. Thanks David 😛 lol