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Desi,
My thoughts and prayers are with you and Bill....Never forget that you are not alone in this world ever...... Many Hugs, Kimberly |
fire
RSD does spread i prove of that. Why dont you clip out a artical and hand it to him. He is one of those doctors you want to slap in his face. RSD needs to be out in publics eye. Some states have awareness day. I live in Syracuse NY i did get channel 3 news to put it on tv. But how much can you say in 2 min. I would love to leave my email other sites you can. Can some one let me know please.
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Spread of RSD...
I know what u are going through. Docs that don't know what they are talking about should do a little more research b4 they talk to their pts. They aren't to bright. My rsd has gone from my left wrist to my shoulder to my right hand to my right shoulder and my pain doc told me that it was not possible for it to spread like that. My thinking is that it is rsd and it can do what it wants when it wants. I am also afraid it has gone into my feet because it hurts so bad to walk some days and they are almost always swollen. I have not gone to the doc for it because I am afraid of what he will say. I can't stand the thought of it being in my feet. I am very scared.I don't want it at all but i have no choice. I just try to live my life no matter how bad it hurts.Sometimes I think it is not fair that I have to go through this, but other people like you r going through the same thing and it is not fair that any of us should have to go through it. Plse tell me if u think it is possible that it has gone to my feet and if it is possible that it has gone the way it has. I believe its true that it can do whatever it wants but I don't know for sure.
Sincerely, screwballpookie |
Desi,
How are you doing? How is Bill? You haven't posted lately, and I wanted to make sure everything is as ok as it can be. Please keep me posted. I get the battery moved this coming Tue, I hope it helps with the pain. If not, it is rsd and it will now be in my lower back, butt, and both legs and feet. I'll wait till after I heal before I decide. Keep me posted. (((Gentle Hugs))) Mary |
"Thank you Shannonmc! I agree with ya on this, most people, especially the medical field out there should be educated!
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Hi Kimberly!
What a "Sweetheart you are!! Thank you for writing and sending prayers up for my Bill! And, you are so right on about I am not alone in this world, ever! Amen to that, amen!! thanks again, Kimberly! ~Love, Desi |
Hi there Screwballpookie!
First of all thank you, your so right on, just like the other's who are saying the medical profession does not know really anything about this awful terriable disease of a beast, RSD. I think you should go to a good RSD doctor(ONe who really knows, treats RSD) PLEASE!! Also, yes you could be getting spread from this beast in your arm(If it started there??) to your other arm, feet, legs, hands, and it go's on and on. They say if you get this early enough, it won't spread, it will be ok. Well, all 8 stelliate ganglion blocks did nothing for me, my doc said no more! Put me on the fentanyl 100MCG/H , percocet for break through pain, neuronton 600mg. three to four times a day, amitriptylin 20 MG Lasix..1/2 10 MG for the swelling. I never used to have high blood pressure but he(MY doc) said it is high due to pain. So, this is what he is doing to keep me comfortable since the blocks don't work. Oh, well.. gotta live with this beast I guess. Thanks for writing, and please get those feet at least checked?? Could very well be something else? Better to know than NOT know, right? Also get you a good pain management doc. If he/she tells you it does NOT SPREAD, arm yourself with some good RSD sites, print them out and tell him/her they are full of it! LOL ~Love, Desi |
Hi fire! Good screen name there! hu? Ok what do you mean by could someone help you?? What about the sites?? Thanks for your reply back to me! ~Love, Desi
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Hi ya my friend, Mary!
Gosh, Bill is still in the hospital!! They did the surgery, found a large staple in his foot. Him being diabetic, his foot is swollen, no circulation, the infection is now in the bone and they don't expect him to come home for a month or more!! Gosh, Mary, this hurts so bad! I am about to fall flat on my face from this flare I am in, but keep on going for my husband and 8 yr. old daughter we have had legal custody of since she was 2 months old. Bill's lungs are not clear, he gets shots in his belly every day(The darn bruises made me cry) We go up there every other day) to see Bill, bring him fruit, flowers, cards, whatever he wants, needs. That man is still hanging tough! I miss him at home so much! As for me same "ol meds. high blood pressure pill was upped a tad. Oh, Mary!! I am happy to hear that your getting that battery out! What do you mean, it may be RSD in your butt, back, legs, feet!!!? Oh, man.. that would be awful if it is!! Gosh, girl.. you have been and still are going through enough!! I will for sure keep you in my prayers, Mary! Please keep me posted, if need be PM me and I will PM ya back, my sweet dear friend!! Love ya!!~Desi |
Hey Desi,
Thank you so much for the info. I cannot go to another doc because this a work comp deal and he is the authorized doc so whatever he says goes. Work comp is suppose to pay for him and referrals and my pain meds but they are not doing a very good job. I am to scared to go to the doc cuz it has already worsened in my upper extremities. I don't want to hear that it is going into my lower extremities. I have a suspicion that that is what it is and I am having a hard time dealing with it without the doc saying yes or maybe even no that it is all in my head. I am scared how do you get over that feeling? Can you ever get over that feeling? Cuz if it is rsd then does that mean that I can do less than what I was doing due to the swelling? I have already taken so much away from my daughter I can bear to take more away from her. All I know is some days is worse than others with the pain and the swelling in my feet. Thank u so much for being here for me. I don't have any friends around where I live to speak to so I have to keep it all inside. Thanks again Desi. Sincerely, Screwballpookie |
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