Living life with multiple chronic illnesses…. and some other stuff!

Monthly Archives: May 2008

So, I had a long day today… well, not all that long, but used a LOT of spoons. drove 40min to get to my client’s playgroup to work with him (loads of fun actually) and then booked it back to the city for the Rheumy appt… well, apparently the Brain Fog is in full effect and the appt was for 3:15pm NOT 11:30am. Sigh. So I go home, get some lunch with the boy, and get ready for my psych appt. That appt went well, hard, but well, as it usually is. Then off to the Rheumy for the 2nd time. I explained to him what the geneticist said and he asked about blood test and the skin biopsy. I told him the geneticist didn’t feel that was necessary because I meet the diagnostic criteria for EDS-III and I might have some vascular involvement. He said that without the tests he wont call it EDS, just hypermobility (he also said I don’t have the skin stretchiness so its not EDS). WTF!!! The GENETICIST–the PERSON who is SPECIALIZED in the condition said there was NO DOUBT that that’s what it is. Sigh. He checks my joints and gives me a script for PT. Hooray *insert eye roll* My primary had no doubt, the GENETICIST has no doubt… and why would I WANT to have this condition… granted having a name to it all feels validating… but, with the conditions comes a LOT of pain and other things. I feel like he doesn’t care or because he doesn’t know a lot about it, he thinks it doesn’t exist. At first I felt like he took the validation I got from the other drs and threw it away. You know what though, I have 2 physicians that say its EDS, and a psych that believes me. They all believe I am in extreme, and some times debilitating pain, and feel that I can not work a full schedule. Rheumy says I may have to reconsider my job and get a desk job. Why, so I can bring back the migraines??? Uh, I don’t think so. I LIKE my job. It’s rewarding. I just can’t do full days. That appt was a waste of time, money, and energy. Now I am home, in pj’s, medicated and not doing a damn thing all night.


I’m starting the SSDI process. I have no idea what I am doing… I have a phone interview on June 13th to do the application and an appt next week with my primary to discuss things. Now I am working on the disability report online. It’s a hard thing to have to point out all the things you are unable to do. Not very good for the self-esteem. It needs to be done, though. I can’t live on what I am making now and bills are piling up.

I talked to the geneticist about a treatment plan for me and what can be done… basically nothing, most people end up having to take narcotics to control the pain. Well then… that sucks. Now what do I do? Honestly, I have no idea. I called my primary today to talk to her about how the geneticist went and what she said. Since I’ve been in a lot of pain lately she called in a script for me until I can go in to see her. We are also going to talk about disability and stuff.

…well now for the awaited pharmacy woes. I gear up (assorted splints, crutches, etc.) and go to the pharmacy about an hour after she called. The pharmacy hadn’t checked the phone messages in a while so the prescription hadn’t been filled and it’s going to take another hour. Sigh. Ok, fine. I go home and find some dinner wait a little longer than an hour and head back. This time it’s filled, however, they can’t find it. Sigh. So I wait while they look. and look. and then the pharmacist decides that he’ll just redo it so I don’t have to wait any longer (it’s already been 30min). As I am being rung out, the pharmacist goes over to the rack of scripts and finds it first shot. Turns out the girl was looking under the wrong name. Sigh. I get home, get comfortable, go to take the meds, and realize that they didn’t put the “easy caps” on. I suppose it’s not a huge deal, at least I got my meds…

… I have Ehlers-Danlos Syndrome. The geneticist isn’t exactly sure which type I have, seems that I kind of overlap into some. I definitely am hypermobile with dislocations/subluxations. I have very soft-smooth translucent skin-but not the super stretchiness. I bruise easily and have Dysautonoma which affects me Autonomic Nervous System (Orthostatic Hypotension, Syncope, Digestive Issues, and other stuff). Unfortunately nothing can really be done about it except symptom management, however, I do feel validated. I finally have a name to what is wrong with me. It’s NOT in my head, I am in pain all the time, and now I know why. What I am having a hard time dealing with is I am only 25yo and the meds that would control the pain make me loopy and I have a lot of “brain fog.” Ergo, working and driving (for me, part of my work is driving-ABA Therapist) is somewhat of an issue. It’s either not work, or be in even more pain. I am really set on not letting this get to the better of me, at the same time, the constant pain and the fatigue is sometimes overwhelming. Anyway, I am talking in circles, time to watch mindless TV and veg out…