Guest guest Posted October 28, 2005 Report Share Posted October 28, 2005 Hey everyone, Thanks to everyone who prayed about my dr. visit before my trip to Texas. It went very well. The dr. was actually somewhat humbled--I think he realized he was out of line when he blackmailed me for my tramadal prescription during the week I went from 15 to 10 mg of prednisone. He finally gave me an actual diagnosis-- " Inflammatory arthritis and fibromyalgia " . It's goofy but there's a certain peace about actually having an official phrase I can say when someone asks what the heck is wrong with me. Because I've grown to trust everyone in this group so much I'm about to tell you some of the weirder things about my illness that I don't even tell doctors any more, and I want to know if there is anyone else out there like me. The last time I told a doctor some of this stuff, her actual words were, " You're so weird. " First of all, when I'm having a bad day, even my skin hurts. Like today, I was trying to make a necklace with beads and I stopped because when I would put a bead on the end of my finger and poke the string through it (it's the consistency of fishing line), when it touched my finger it really hurt. Another problem with this is that waist bands are painful--even when they're loose. I spend most of the time in pajamas and there are some days that I have to wear overalls if I go out. One of my friends called me an " old hippie " because of how I dress. I'm not just talking about uncomfortable--I'm talking about Ow OW OW. The next thing is that once upon a time I loved spicy food and now I can't tolerate it at all. Not only that, when I get a bite of something that's hot--like salsa that I thought was mild but turned out not to be--it burns my mouth for a loooooooong time. Before I got this, even if I burned my mouth with spicy food it would go away in just a couple of minutes, but the other night a bite of salsa had me sucking on ice for the next 45 minutes. It just wouldn't stop hurting and the pain was severe from it. Another weird thing is that certain noises hurt certain parts of my body. Please don't think I'm crazy--even you guys might find this too weird, but an example is that I was visiting a church and the preacher's mike was a little too loud and he was one of those people who makes their " S " sounds whistle when they talk. Every time he said a word with " S " in it, it went right through me. It made my cheeks and my legs hurt. Those noises that come from gameboys and certain Nintendo games are physically painful for me, even when they're not too loud. Every now and then one of my daycare kids will screech and it hurts my ears for way longer than it should. Okay, now I've gone out on a limb. Anyone out there as weird as me???? laura cnberte <bertelson@...> wrote: I am not positive, but I believe Lucille Ball had RA. > > > > > > I was just wondering what do the wealthy and > > famous do about their > > > cnditions. Surely it isn't just the regular > > people who have > > > illnesses. Why is it we never see or hear from > > those famous, and > > > were they famous before getting the disease and > > how do they earn a > > > living after getting the disease? > > > > > > > > > > > Kathe in CA > > > > > __________________________________ > FareChase: Search multiple travel sites in one click. > http://farechase. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2005 Report Share Posted October 28, 2005 Hey everyone, Thanks to everyone who prayed about my dr. visit before my trip to Texas. It went very well. The dr. was actually somewhat humbled--I think he realized he was out of line when he blackmailed me for my tramadal prescription during the week I went from 15 to 10 mg of prednisone. He finally gave me an actual diagnosis-- " Inflammatory arthritis and fibromyalgia " . It's goofy but there's a certain peace about actually having an official phrase I can say when someone asks what the heck is wrong with me. Because I've grown to trust everyone in this group so much I'm about to tell you some of the weirder things about my illness that I don't even tell doctors any more, and I want to know if there is anyone else out there like me. The last time I told a doctor some of this stuff, her actual words were, " You're so weird. " First of all, when I'm having a bad day, even my skin hurts. Like today, I was trying to make a necklace with beads and I stopped because when I would put a bead on the end of my finger and poke the string through it (it's the consistency of fishing line), when it touched my finger it really hurt. Another problem with this is that waist bands are painful--even when they're loose. I spend most of the time in pajamas and there are some days that I have to wear overalls if I go out. One of my friends called me an " old hippie " because of how I dress. I'm not just talking about uncomfortable--I'm talking about Ow OW OW. The next thing is that once upon a time I loved spicy food and now I can't tolerate it at all. Not only that, when I get a bite of something that's hot--like salsa that I thought was mild but turned out not to be--it burns my mouth for a loooooooong time. Before I got this, even if I burned my mouth with spicy food it would go away in just a couple of minutes, but the other night a bite of salsa had me sucking on ice for the next 45 minutes. It just wouldn't stop hurting and the pain was severe from it. Another weird thing is that certain noises hurt certain parts of my body. Please don't think I'm crazy--even you guys might find this too weird, but an example is that I was visiting a church and the preacher's mike was a little too loud and he was one of those people who makes their " S " sounds whistle when they talk. Every time he said a word with " S " in it, it went right through me. It made my cheeks and my legs hurt. Those noises that come from gameboys and certain Nintendo games are physically painful for me, even when they're not too loud. Every now and then one of my daycare kids will screech and it hurts my ears for way longer than it should. Okay, now I've gone out on a limb. Anyone out there as weird as me???? laura cnberte <bertelson@...> wrote: I am not positive, but I believe Lucille Ball had RA. > > > > > > I was just wondering what do the wealthy and > > famous do about their > > > cnditions. Surely it isn't just the regular > > people who have > > > illnesses. Why is it we never see or hear from > > those famous, and > > > were they famous before getting the disease and > > how do they earn a > > > living after getting the disease? > > > > > > > > > > > Kathe in CA > > > > > __________________________________ > FareChase: Search multiple travel sites in one click. > http://farechase. > Quote Link to comment Share on other sites More sharing options...
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