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Snoopy05 
I appologize for not responding to everyone. I needed a time to take leave of my writing and just focus on healing. I am still struggling with a lot of pain, problems ambulating, but I thank God I have a wonderful man, Nolen, that helps me every day in all the ways I need. Somtimes he has to help me do things that are embarrassing, but he loves me enough to do it anyway. I am so lucky to have him in my life. I recently celebrated my 56th birthday and was inspired to write a poem to my identical twin sister. Some of it may not mean anything to you, but I hope you understand my thoughts when I wrote it. My twin and I have been through a lot together concerning her health, our mom's health, and now we are dealing with my health too. I am so blessed to have Nolen and my twin to support me. Everyday when I get up I am in so much pain I feel like crying, but because of my family I refuse to give in to this disease. I love you all and will answer as many messages as I can. I am going to have some time off soon from work so I can address everyone. Love and Hugs, Char
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Just writing this journal today to update everyone on what has been happening. After I stopped taking the 30 mgs of Prednisone a few weeks earlier, my legs and feet were swollen still. I also had swelling all over my body. My doctor thought it was from the Prednisone. However, after I had stopped the Prednisone for over a week I still had swelling and it became worse. Finally my doctor started me on Lasix 20 mgs a day. I took that for about a week which did nothing to stop the swelling. He increased the dosage to 40 mgs a day and that helped. My face, arms, legs, feet and most of my joints were so swollen I could not move about very well. It was very painful also to be off the Prednisone. Finally after taking the 40 mgs of Lasix for a couple of days, the swelling went down. I am still on the Lasix and do not swell as much. I again started the Prednisone a week ago and took 10 mgs only. I quit taking it on Friday due to doctor’s orders. I am now into my 4th day without the Prednisone and I feel very bad. I hurt all over, have a fever, cannot walk too far, and have severe fatigue. I will see the doctor tomorrow. Also my hands are numb even when I am not typing. My knees, shoulders, hips are the worse, but now my fingers and feet are affected more than before. I am very depressed too because of how badly I feel. Pain can really affect a person’s mental state.I still have some time to wait before my Rheumatologist Exam on December 5th. I just hope I can hold out that long. (I am usually a very positive person, but enough is enough!) I hope everyone is feeling much better than I am…Hugs, Char
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i am so sorry that you can't get good help. i agree enough is enough. and mental state is totally affected by how you feel day in and day out. i hope you get to feeling better ASAP. i'm praying for you. take care. one day at a time. love and hugs, meg
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so sorry to hear that you are feeling so bad. that is the bad part of this disease. i wish i could take it away and you would feel better today. hang in there. new address gjmarsall@att.net. take care.
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Char, I think the doctor is trying to wean you the prednisone too fast. If you have been on it for a while your adrenal gland stops producing cortisol ( the bodies natural steroid) and if you just stop taking the prednisone your adrenal gland does not have time to restart. This can cause pain, Phlebitis, swelling, heart palpitations and all kinds of things. I ended up in the hospital for a week when I had a doctor tell me to just stop taking the prednisone. I don't think you can just stop after 10mg. I'm now down to 6mg and it has taken 6 months to go from 10mg to 6mg. I worry about you. Please take care of yourself.
Love ya,
Denise
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You are in my prayers marilyn
I talked to my doctor and he said I have to be totally wheelchair bound before my insurance will pay for me a scooter. So it is up to me to do that on my own. I am looking into a referbrished scooter that is about $200 dollars less. I like the P3 Cruiser the best, but I have not seen them in person, only online. I have to stand up to wait my turn to talk to doctors at my office and also I have to walk quite a long distance to the bathroom and other areas at work. I cannot walk more than 5 or 10 minutes without terrible pain in both hips, my knees, and then my feet swell too. So I am thinking a scooter would help me a lot. I probably could get Voc. Rehab to help but I have such a hard time getting my counselor to even think about anything like that. So rather than go through the stress of it all, I am going to see I I can pay it out through a store on installments or 90 day lay away. Anything at this point will help me. I am reduced to 10 mgs of Prednisone, still on Plaquenil, and now am taking 40 mgs a day of Lasix for my swelling. Still waiting on the Rheumatology exam December 5th. My pain is better, but never gone. I quit the Prednisone again this Friday, so that means I will be hurting really badly after that. I am so sick and tired of being sick and tired. Even my finger and toes hurt at times. I hope everyone is doing well, hope you have a great week and I will try to post soon. Love, Char
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that is so crazy ,heres a hug
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Past Entries
I am so happy to hear from you glad that you are ok
purplebubble
i am glad you are doing okay. i hope you get relief soon. always praying for you. take care one day at a time. love and hugs, meg
MEGNEEDSABABY