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Strategies for success!
2 Replies
barbar - November 28

Let's start a thread focussing on the various strategies we've developed for success. I'll start: The Big Picture. This disease can be one of three things: FMS, hormonal disorder, tick-borne disease. While I am being treated as an fms patient, I am also exploring whether or not this is any of the other two. I am working with an endocrinologist who specializes in treating fms to pursue Larry's suggestions and also with a doctor specializing in tick borne diseases. As my fms doctor points out: let's not forget it can be all three. I am monitoring my meds. I am on some pretty intense meds. My doctor wants to increase the Fentanyal as it is the pain the keeps me from being able to walk. I am resisting this because I don't want to rely on a synthetic morphine. too much. I am supposed to take Vicoprofin if I have any break-through pain and already I'm on so much Fentanyl I don't notice it if I take three Vicoprofin. That means you're on some pretty intense Fentanyl. I try to move. I can't move very much at all. I can walk around my apartment but not round at work. I have this really really cool truck that I have to drive because of the way this disease has contorted my body (and because I have to have it to drive to work, both the car payments AND the gas (for work) are tax deductible!!!). I have satellite radio in the car. So to move, I walk back and forth to the car as much as I can, get in and go drive. Actually, the car (which was prescribed by my doctor) alleviates my pain somewhat and there are days at work I just go to the parking lot and sit in my car for about 20 minutes. Get satellite radio and Buzzsaw, channel 19 on Sirius. I have friends over. My buddy Mark has been there for me for 30 years. He has the most stressfull job in the world. He's in the army. 'Nuff said. When he comes over, 'Mi casa es su casa.' I wait on him hand and foot. I make sure I have all the things he likes and that I have gone out and found more things he might like. He gets the remote. That's right: he has total tv rights. Now that it's Fall, every Saturday I make him a big pot of soup or stew (I am a fabulous cook) and fresh bread. Enough food that he can take it home with him and not have to worry about cooking. I stay away from negative people, e.g., family (although my sister give me $150 (after I have giver her thousands. ) My sister and I are a long story). I get up and go to work every day I can. I have been forthcoming and candid about my condition with my boss, who has been marvelous. They gave me a specially designed chair (that actually fits my butt!!). Help and support at work is wonderful. I come here for support and comfort. You guys are great. I try to keep my house clean. I can't vaccum all the time so I got a Fuller brush sweeper that weighs nothing and pick up the basic stuff on the carpeting. I have Swifter Sweepers---both the mop and the vacuum mop---(I know I've spelled vaccum several different ways, clearly there's a problem) in both the kitchen and bathroom so I can sweep and mop every day taking only a few seconds. I've strategically placed handiwipes about the house , e.g., near places where I can sit and clean, so I clean with as little energy expenditure as possible. I use paper plates and plasitc eating utensils to cut down on kitchen clean-up (although I do have these wonderful soup cups that I call doggy bowls that you can use for eating just about anything). I try to get at leat 8 and sometimes 10 hours of sleep every night, drink a lot of water, eat a lot of fruit, take my vitamins and supplements. I make sure I have some good projects that are doable, pleasant and rewarding (I am president of the women's group at church). And finally, I have three birds, one of whom insists on sleeping with me every night, which contributes to my getting to bed early. When it's Percy's time for bed (Percy the parrot), he sits on the edge of his perch like I owe him money till I turn out the lights and head for bed. Anybody else? What stretgies do we have in place?

 

AmberRose - November 28

well my pain isnt that bad yet...hopefully never but it soudns like youdefintly got a handle on this thing! I try to get out and excersie even if its jsut to the store..i keep myself going by thinking positive thoughts and i mkae sure i dont dwell on the bad thigns and im allwya slookign to the future..basically its jsut the fatigue and fibro fog that get to me so far with the occasianl few weeks of pain here and there...but i did get apart time job where my boss does understand that i may have bad days and good days...allthough i do plan to start a swimming thing or yoga maybe but jsut the thought of driving anywhere right now stresses me out and of course in turn make sme tired..but as soon as all the snow and ice (mainly ice) melts ill be there! well besides its like -40 here to! but i defintly check this website all the time and that helps jsut knowing that you guys are here and im trying to find a support group in my city thats not downtown..cause downtown is a sucky place to drive to :P but i also have my family and it helps...my mom allready nows abotu fms becuas emy aunt had it and my dad started doign his own research as soon as i told him..the hardest part is my inlaws i guess becuase we are not as close..ive only known them for 5 years as apposed to all my life..but we are workign on it :) it dosnt help that i dont like to complain either so they dont really no the extreme of it!

Good idea for a thread though i look forward to seeing everyone elses! oh and before i moved i had like 2 of everything in each bathroom to help me clean so when im in there i can clean and not have to worry about stiars and such..i now have trestock becuase we ahve a 3rd bathroom now! *sigh* i love this house i hope the housework dosnt bring me down lol.....but the kids are goign to spend most thier summers outside which will help :)

 

BRENDA - December 21

A loving tribute to our Barbar!!! You will be deeply missed!!!!!!

 

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