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#11
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Sooz, You are loved even when you don't go above and beyond. Take care of
yourself. Tina "Dr. Sooz" wrote in message ... So sorry to hear about your pain. Hope the relief has continued. Sweetie, your words touch me and warm me. Just to keep everyone abreast of what's been going on, as briefly as I possibly can -- I haven't been keeping it to myself on purpose. It's just been hard to know when to say anything. It's been so unresolved for a long time. To start with: when Kevin graduated law school in May 2002, it started a cascade of events from which there was no respite for me (or for him, but this is about me, me, ME!). Fibromyalgia reacts badly to stress, blah blah blah. A couple of the events were really hard on me physically, mentally, and emotionally -- not bad events, but demanding. The damp winter cold in the SF Bay Area made things worse. The fibro pain, and other symptoms, got gradually worse and worse and worse. I didn't notice it at first, and I had so much going on that I didn't notice it for a long time. Finally Kevin ended up in the hospital himself, with several scary events (including ambulances carrying him away twice). I lost a lot of sleep, really crucial for fibro folk. About a month after he got better, I noticed I had gotten so bad I wasn't getting out of bed anymore -- not because I was depressed (though I was!), more that the pain had completely beaten me and was ruling my every move. I wasn't able to make myself feel better -- I didn't have the energy to do the necessary stuff, but I also was unable to make any difference in the pain. Nothing worked. I saw my doctor, who helped with new meds (not painkillers, but an Rx that neurologically prevents pain). The first two months of the Rx made me sleep most of the time. I had to cancel everything.... dentist appointments, haircuts, bead classes, everything -- too hazardous to drive! It started to help. I was so grateful! Two weeks ago, I reached the full dosage of the meds (it takes a couple of months to slowly, gradually increase the dosage to therapeutic levels). Whew. I was starting to lose my usual personality; it was rough. I'm now starting to bead, be able to have Mercury for a real visit, get my hair cut again. And my teeth are really clean again! I had some ups and downs, and serious setbacks, during the gradual increase of the new meds. It was a struggle. The side effects are almost nonexistent, except for the (now past) sleepiness, but that wasn't true at first. The pain fluctuated without warning, and affected my morale a lot. I didn't bring news of it here, because I didn't know what was going on from one moment to the next. I was so confused, freaked, afraid, struggling, and really suffering that I didn't know what to say. My memory was totally screwed up (worse than usual) because I was using up all my energy trying to get through the next half hour. Thanks for the treats anyone sent me during this time. It really helped me not come completely unraveled. I was slow about thanking everyone, and not consistent in where I posted or emailed my gratitude. I may even have not-thanked someone, or more than one someone. I apologize if I did that. It's been indescribably awful; I don't know that it's over yet. I'm still kind of in shock. I feel like a different person. It just went on for way too long. If I'd known, last May, what I know now, I don't know that I'd have had the courage to put one foot in front of the other. I'm still gun-shy and not up to whatever "normal" is for me. That's the story. ~~ Sooz ------- ESBC Dr. Sooz's Bead Links http://airandearth.netfirms.com/soozlinkslist.html One of the advantages of being disorderly is that one is constantly making exciting discoveries. ~ A. A. Milne |
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#12
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Neurontin links I found this morning below. I'm going to ask my Dr. about
this. Public Citizen's eLetter: Neurontin (GABAPENTIN) http://www.citizen.org/ELETTER/ARTICLES/neurontin.htm Neurontin Significantly Reduces Chronic Neuropathic Pain http://www.pslgroup.com/dg/D6AC6.htm neurontin http://www.burningneuropathy.com/neurotin.htm ~~ Sooz ------- ESBC Dr. Sooz's Bead Links http://airandearth.netfirms.com/soozlinkslist.html One of the advantages of being disorderly is that one is constantly making exciting discoveries. ~ A. A. Milne |
#14
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Barbara, I love you. :-D
OK, been here, done this. Well, except for the creep. My husband is also disabled, so what can he say? I have a yet-to-be-named neurological problem that causes intense pain in, well, everything from my hips down. It started in my left leg, now it's in both. And not just sciatic, it's front, sides, back, hips, tailbone, you name it. It got so bad that I finally set a date. July 4, 2003. My independence day. The day that I was going to jump off a bridge because I couldn't take the non-stop pain anymore. It has come and gone. I'm still here. Why? I finally found a pain specialist that understood that living with that kind of pain is not an option. And the fact that none of the 17 specialists that I saw could find the cause didn't make it any less painful. Now I'm on a 100mg Duragesic patch. I change it every 3 days. I also use vicoden (hydrocodone), when the pain overcomes the patch. I also have RLS and take a lot of other drugs when I go to bed at night so that I can sleep. This, of course, leaves me too exhausted to move during the day (sound familiar?). Enter Provigil. It's a new drug developed for narcolepsy. But it has proven very effective for people with chronic exhaustion due to poor sleep or a lot of meds. It took some wrangling to get my insurance company to approve it, but we got it done. Now I function almost like a "normal" person. I can drive a car. Work in my studio. I can even do shows if I have someone to help me so that I can take a nap if I have to. Also to do all the heavy lifting. If you do not have a pain specialist, get one. Explore the Duragesic patch. Get Provigil. You will get your life back. Oh, and anyone who doesn't understand what pain can do to your life and gets holier-than-thou about it -- pour some cayenne pepper in their shorts. When the pain finally stops, ask them how they would feel if that burning kept up for months, then years, without ever stopping. Not even for a minute. If they still don't get it, throw them off the bridge. Barbara Dream Master www.dreamweaverstudio.com ~~ Sooz ------- ESBC Dr. Sooz's Bead Links http://airandearth.netfirms.com/soozlinkslist.html One of the advantages of being disorderly is that one is constantly making exciting discoveries. ~ A. A. Milne |
#15
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Sooz, You are loved even when you don't go above and beyond. Take care of
yourself. Tina ~blubber~ ~sniff~ ~~ Sooz ------- ESBC Dr. Sooz's Bead Links http://airandearth.netfirms.com/soozlinkslist.html One of the advantages of being disorderly is that one is constantly making exciting discoveries. ~ A. A. Milne |
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