There is a snapshot of bedtime for me every night. Every night a mouth full of pills to wash away the day. Sometimes I shudder when I have to put them all in my mouth. Every night. I think about detoxing. I think about throwing them all away, and one time I went completely postal and threw them all in the trash.....sweet John fished them out, bottle by bottle and reminded me...I have to take them. I HAVE TO TAKE THEM. To be well. TO be here. Tobe present. TO have any desire to get out of bed. Why? Why does my body refuse to play well with others? What do I have to have a stomach full of medicine to function just like YOU function every day? Some days at best my medicine gets me up to mopey. I take a pill for blood pressure, a pill for depression, a steroid to supress my immune system (and make my face fatter than a stuffed mule), plaquenil to calm my joint flares, and the famed Cellcept that is expensive, causes birth defects and is supposably the CURE ALL drug for Lupus. My doctor says this combo of drugs is okay. He says I will be well if I take them. Every day. So I will. I will for John. I will for Sofia, for my family and friends. I'll take them for you. I'l l take them for me. I have been at Hell's door with Lupus. Knocking and hoping noone lets me in. Hoping noone takes me then and there. It was not pretty. Lupus is not pretty. Infact it outright sucks. I have a Myspace Lupus support group and in the past three years, THREE people have died. Three people yall. One inwhich I talked to quite often. One in which I still have emails from, Tara. This disease isn't playing, yall. It is serious. It almost got me once but I was saved by the grace of God. Not only did he save me...he saved me......sent me directly to Christian friends who once again saved me.........and showed me the light. Now when I start feeling bad or sick or under the weather, I get my crew to pray, and I feel better every time. Lupus. It is scarry, it is real. It is here. I hear stories of people who were misdiagnosed with Lupus and I think.........not me, there is no way in hell I was misdiagnosed. I've got it. And in a way I feel at peace with that, because I have been poked and prodded so many times I have confirmed lupus 10 times over. But atleast I know it's Lupus. So many people get tested over and over and never know or are misdiagnosed.
Here is a dialog between me and Tara....
To: Tara
Hey Girly:How are ya? Just need to vent for a second. I have had a pretty mild case of Lupus so far....Really. But since like March is seems I cant catch a break. That was when my bp went thru the roof, then my hair started falling out like crazy. It is so thin now it feels like a cotton ball, and I cant even style it or anything, because it just hangs there in strands. I can see right thru it. The plaquenil has helped, I have been on it almost two months, and the hair has pretty much stopped but it isn't growing back yet. And for the past month I have had this tingling all over my body. I don't think ANYONE has the symptoms I have had lately. I brought it up to my doctor and he didn't seem concerned. Said he was going to have a hallway consult with a neurologist and he would get back to me in a week. That was a month ago. Hoping it is not early signs of MS. It comes and goes, but it is annoying. I am starting to feel quite a bout of depression. I mean, I didn't even think I HAD lupus anymore really. It was pretty much gone for 7 years. Now I am dealing with all this stuff. My eyes have been awful...dry.dry.dry. I had to get plugs in them. It just goes on and on. Thanks for listening. Amber
To: Amber: Sometimes it's almost like I'd rather have something horrible and tragic happen than the monotony of uncomfortable Lupus effects. I hear ya. Seems Like people stop getting worried with you.Honestly I think sometimes all it takes is someone getting POed along side me. Yeah, they can't fix it... but why can't they get as worked up as I am? I'm a natural fix-it, worry wart sort of person. I have a feeling you are too. HeheI truly hope that they come up with something for you. The tingly thing sounds annoying. Hoping it's something easy like using different dryer sheets. Sheesh we just never know-- Lupus is so random. The hair thing sucks, don't know if it helps but mine grew back even thicker. Have to say I am so happy you vented with me. Just really happy if it helps at all to dump anything. I might be slow to respond, but I keep my Lupie friends close to my heart always.Tara
Suzanne was beloved by al in our support group. Her death hit me soooo hard!!!!
And a few myspacers with Lupus if you have tons of time...
http://www.myspace.com/77539607
http://www.myspace.com/77539607
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