One of “Those” Days

Yesterday was just one of those days. My joints started acting up on me rather badly. I’m not sure if it was the weather or what, but my ankles, knees, and wrists were all not wanting to do what I wanted them to. I ached all over!

Was there anything that led up to this you’ll probably ask. The answer is no. I had been resting the last two days so my joints weren’t overworked or tired. I hadn’t strained them recently for any reason and I hadn’t even done less than usual. There was nothing unusual that I ate or anything. I’ve thought about it and other than the weather changing kind of rapidly that day there’s no reason for my body to have reacted as it did.

I’ve got to go get my physical done for a new job I’m trying to get today so I certainly hope my body decides to behave better today than it did yesterday!

Gotta love work…

I started working as a cashier at a convenience store at the end of June of last year. I know, I know, probably not the smartest thing, but they offered me a paycheck, one we really needed. Anyways, since I’ve been standing all the time I can tell all the much more about how much my shins hurt. I’ve had problems with them since I went in the Army (yeah, I know an even bigger mistake, but I had no idea EDS existed back then). I was diagnosed with “shin splints” way back then, but I’ve since learned that just means I had pain in my shins (no duh!) and they didn’t really look any further than that. Now not only will my shins hurt I have developed bumps on my shins that will move around like it’s in the tissue somewhere. It sounds a lot like molluscoid pseudotumors have formed around where the muscle tore, but it is sometimes very painful. Another thing that I’ve noticed recently is that my right wrist seems to have lost a lot of it’s strength. I just can’t seem to make the muscles work as hard as they used to.

I don’t know if there’s anything that I can do about either. I might have to see about getting a wrist brace eventually. Anyways, maybe you all have some ideas as to what could help or what might cause the above. I’ve been thinking a lot about changing to another job… but what I have no clue. I guess for now I’ll keep going and going and hope that nothing fails me. lol

Search for Help

I’m searching for someone in the Goldsboro, North Carolina area for help on seeing what options there are. If anyone knows of a specialist in the area or someone who could refer me to a specialist it would be appreciated. Also, if there’s any local groups out there I would love to be connected to one.

Some weeks I’m fine, some weeks I’m in constant pain. I’m managing so far, but I don’t know how long that will last. I wish I could at least get my foot in the door before it becomes unmanagable.

Am I going crazy?

It’s something I used to ask myself all the time. Seemingly I was perfectly healthy, but there were things that I kept feeling that just weren’t explained. Also, things that I took to be normal I have since come to find out are very unusual. My father was very much against the idea of going to a doctor unless something was visibly wrong. It always seemed to me growing up that he just didn’t want to pay a copay and would rather spend that money on going out to eat lunch at his favorite restauraunt. Me and my sisters obviously weren’t his main priority, but we didn’t know of any way to get out of the situation we were in. Knowing what I know now I could have gotten Social Services involved, but I didn’t even know that existed back then. That’s another story, though, so I’ll stop there.

I knew I was double jointed when I was little, but didn’t really know anything about what that meant other than I could dislocate some of my joints at whim and I seemed to be very flexable, however I had problems touching my toes unless I had someone push on my back first so that the muscles in my legs would relax. I always seemed to have problems playing sports. I would try to do one thing and my body seemed like it would do it’s own thing. Everyone said that I was just not coordinated enough, and I took that to be the reason, after all it did seem that I was just rather clumsy overall.

I also had problems with getting warm once I got cold and with cooling down once I got hot. I didn’t think much about it as a kid, because most of the time I was inside our house which my dad kept at around 70 degrees year round, but something that really stood out at me later on down the road. I also had problems with my knees going backwards where I could feel the bones of my leg hit each other. People seemed to not understand my explanation, but I didn’t really understand it either, so I couldn’t blame them. I had eye problems at a young age, but considering that almost everyone in my family needed glasses I wasn’t to surprised.

My grandmother always used to tell me that I should play the piano because I had such long slinder fingers, a pianist’s hands she used to always say. You could also see a lot of the veins in my body through the skin. It was just how I was and no one seemed to think anything wrong with it, so why should I?

So many things that I just disreguarded as nothing or usual when I was younger, and now I’m finding out that they’re not usual at all. The more I learn about Ehlers-Danlos Syndrome and it’s symptoms and how it’s diagnosed the more I’m certain that I had this all along. It’s a genetic disease that exists throught your lifetime, however how badly it affects you is different for each person and often isn’t really appearant until at least your 20′s.

What I keep beating myself up over now is that I should have known about it in my mid teens rather than now. If I would have reported what I was experiencing to the doctor and gotten referrals to specialists I might have known years ago what was going on and could have gotten treatment. Since I was 12 or 13 I have had problems with spells, for lack of a better term, of extreme pain in my joints. Sometimes it was one joint, sometimes a few, sometimes all of them. I remember very specifically one incident when I was 13 in which I spent half the night awake and crying in my bed because it felt like every joint in my body was aching fiercely. I mean a deep throbbing pain that just wouldn’t let up. I finally cried myself to sleep, and the next day felt perfectly fine. I shrugged it off as a one time event or that maybe it was just part of my imagination. I went back to the normal aches and pains that I had been having for years, so I logged it away in memory then tried to forget it. After all, who would believe me if I told the story anyways.

Well, now that I know about this disease and how perfect it fits all my symptoms, I have a problem, no insurance. No way to find out and no way to get treatment. There were plenty more things that lead me to the conclusion that I have this disease than just the above, but listing it all in one post would be very long reading. However, this is why I created this blog, to help me list out all the different things and get my symptoms in order. Maybe one day I’ll be able to get an offical diagnosis.