The reason

I was originally going to make this a daily tracking of my pain and how I feel. It didn't work out that way. I just couldn't bring myself to write every day about how much I hurt, when I hurt, what I was doing - blah. I have also been doing a lot of research and wanted a place to bring it all together. So..here it is.

I was diagnosed in 2007 with Fibromyalgia. Of the 18 trigger points, I have 14 that are always active. The FM is centered mostly in my hips and lower back and from 2007-2008 I almost couldn't walk from the pain. I was trying to go to school full time and work part time, and deal with this. I had been married for only 4 years when I got the diagnosis, but had been in pain for most of my marriage. I have been through two bouts of physical therapy, a chirpractor, a host of muscle relaxers, pain killers, anti-seizure meds, anti-depressants, and massage.

The physical therapy helped very little - only when they did ASTYM did it help at all. Chiropractic made it worse - and made the migraines kick in. Muscle relaxers work only a little bit, pain killers as well - I take them when the pain gets so bad I really really can't deal with it. I'm a Type-A, and hate being not in control...and pain killers knock me for a loop. Lyrica worked the best, but I gained 20# in 2 weeks, so that was a no-go. I'm currently on Neurontin, but am going to talk to the doc about a change. I've been on so many anti-depressants that I can no longer remember all the names. I get to talk to the doc about changing that too, soon. Massage and heat are the best, but my insurance doesn't cover massage. I'm currently unemployed - my last job quite literally drove me crazy, I had migraines every day, and my doc wanted me to quit...and once I couldn't handle the migraines and pain any more, I did.

That was two months ago, and I have to start looking for a job again. It's hard, because there are so many limitations. I can't stand for long, I can't walk much, I can't lift anything over 20# (and even that is stretching it and couldn't be done repeatedly). If it's a really chaotic environment (like the call center I worked in), it's not going to work because the migraines will come back. I'm suited (and degreed!) for office work...but the unemployment rate here is 9.8%, the highest it's been in 20 years. With all this...why am I looking for a job? Because if I don't, we'll lose our house before too much longer. It's tempting to go get a job at McD's...even though I can't handle it, even though after a few hours of work there I would be down for several days. Really, we've been trying for a loan modification on our house for almost a year and the bank is doing nothing as far as I can tell. Dragging their feet, definitely. But if I got a job at McD's and really hurt myself just to make ends meet, maybe someone would realize that we need help instead of telling us they CAN'T help us.

I am filing for disability. I can no longer wash my own hair or brush it once it's wet. My friend just cut about 5" off to try and help make it better, but I still can't keep my arms up long enough to brush it. I can do only a little bit of housework every day. If my energy level is "high" (for me), I might manage to vacuum. Normally it's dishes, and then I'm wiped out. Dishes. Really. Folding the laundry is hard, because I sit on the bed (can't stand!) and then my arms get tired of lifting the clothes.

I miss my life. I miss having energy. I miss being able to go outside and work, or take care of my house, or walk my dog. I miss being a "wife" to my husband. I miss it all, but I feel trapped in a body that has betrayed me.

I'm sorry this post is so long. I've needed a place to write all this out that didn't overflow into the other blogs I write.

April 20, 2010

(I copied this over from the first blog I attempted like this, just about a week ago)

Today is actually a fairly good day. I expected to be worse, since I took the puppy for a walk yesterday and it was longer than I had anticipated (.67 miles). I was hurting by the time I was halfway done, but I still had to walk home. At least Inara calmed down by that time so she was no longer trying to pull me.

Didn't sleep all that well last night either. I woke up at 7:45AM and didn't think I would go back to sleep, but I did. I then awoke at 8 something, again at 10 when my husbands alarm went off. He turned it off, set the alarm on his phone, and the next thing I knew he was waking me up at 10:30 to say goodbye. I got up, since I usually get up when his alarm went off, and staggered to the computer room. VERY stiff when I got up.

I've been at the computer since I got up, as I am not working and have nothing else to do except a little housework. I remembered to take my Neurontin, forgot the Wellbutrin, and it's too late to take it now if I want to sleep tonight. Haven't eaten much, since I'm not really hungry. I've been snacking on some puffed rice & corn things - very tasty! OCD is kicking in hardcore - it's very tempting to rearrange the furniture in the computer room, but I know full well I can't move the stuff. Well..I could...but then I'd be down for about 3 days. I am contenting myself with rearranging my farm on Facebook. Stupid brain. It's not supposed to do this to me when no one is home to help me control it!
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Update:  It's just about midnight and I feel like shit. We had beans and franks for dinner, and then popcorn while husband played a video game. I am now really dizzy, my stomach is nauseated, I have a headache. Not sure why, but this happens fairly frequently. I'm not hungry, or thirsty. I didn't eat anything unusual. My schedule hasn't been thrown off - we never go to bed until about 1am, since we don't get up until 10. I only forgot one med today, but I have a hard time remembering that one anyways, so that's still not unusual. I don't know - I just wish we could figure it out.