Guest guest Posted December 8, 2010 Report Share Posted December 8, 2010 Please whine ...it is normal for us and we serve cheese with that twice a day! The whining goes along with the disease as long as we don't let it go on too long. I am a long timer here and have tried so many different medication combinations, in and out of the hospital on a regular basis. At this point I have been out of the hospital for 1 whole year. I want to jump for joy, but they had to amputateilt my right let due to complicationss from a TKR where the patella component cracked. I have severe phantom pain and horrendous neuropathy from the diabetes I received from the high doses of predenisone that I received over the years. I have been battling with blood clots. Now here is my problem.....I am allergic to heparin and coumadin......it makes me bleed from any and all scarss that I may have on my body. I started bleeding from my C sectons scars from over 20 years ago!!!!They put a filter in my vena cava as a treatment......if it works.....I think I should take an aspirin a day just in case, but I tend to get ulcers. This is why I usually stay quiet on the board so as not to scare any members. This is a long hard road to travel and sometimes a very lonely road but keep on posting and don't whine too long! You have great people to help us all get over those humps in life! Well, I have to pass out the winter coats to my cabana boys around the pool. South FL is seeing temps in the 30's & 40's.......Brrrrrrrrrr Now THEY do some whining!!!! Gentle, warm weather hugs.............. Debs in FL [ ] Re: Whining Whine Away , we can all relate. I just got out of the hosp myself, was put on massive doses of prednisone (like shots of 125 mgs), then tapered to 10ng when I got out (about a week now), so aside from the bloot clots/pleurisy my hips began bothering me too, very badly. After discharge and daily clinic visits to coumadin clinic, I finally get to Rheumy and she offers me a shot of prednisone in my hips for bursitis after JUST telling me my calcium is thru the floor from the prednison, its at rock bottom!! She is telling me to take calcium with vit d three tines a day for the next 3 months. She says dont take it more than 500 mg at a time, because your body doesnt absorb more than that at one time. So I ask her WHY she would offer me more prednisone? Her response: Thats all there is to force down the inflammation, besides Motrin, etc. There has got to be a good balance, prednisone is dangerous in large amounts to your bones. I want out. I am back to 5mgs, lets see. Gained 5 pounds (RATZ) too. Try poultices, heat up the herbs (comfrey is good, get it in a health food store) on a piece of cotton and tape them over your hips. Also, heat up the linament (like Tiger Balm), not hot, but very warm. A Heating pad will do as well, but not with the heated linament (cause it can burn your skin). I try both Ice and Heat when they flare. I need all these drugs, but I hate them too. Now, I am on coumadin for 6 months and they took away all leafy greens/Vit K so thats all I cook with and eat alot of. There has got to be a better way. I remember my grandmother used horse linament (which is VERY similiar to Tiger Balm). Also, if there is a Chinese pharmacy in your town, try TEET DA JOW PEI,its a chinese linament, very good. I am investigating more and more Chinese and Ayurvedic remedies (like Tumeric Powder in hot milk). I am convinced that there is a better way. You cant take tumeric with coumadin though, so I have to wait 6 months. I check and double check on the herbs with the meds. So, whine away, we understand. I hope you feel better.....laying in bed is necessary, but too much is bad too. So get up, move your legs, shake em out, stretch em, walk a little, then go back to bed, you need to move to live too. Fondly, OKD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2010 Report Share Posted December 8, 2010 Hi Debs.  I was so happy to see you posting today and have been missing you. Then I read your post, and was so sorry about your leg amputation. I know you have been to hell and back many, many times. I am happy you have not been sick for a whole year, which is truly a miracle. You have so much to deal with each day. I am glad your Cabana boys are there to help you and make wonderful cocktails for you. What a life!!!!! ha ha ha  I am sure you hate this cold as much as I do on my side of Florida. BRRRRRRRRRR is right. It was frost again these last 2 nights. My son covered as many plants and trees as he could. We lost half of our landscaping last winter when it go to 28 degrees. Nothing in Florida can take that kind of cold.  I hope they can help you being able to tolerate Coumadin etc. You sure do not need ulcers with all you have going on. I do know there are better days ahead for you. You have a wonderful spirit still. I miss you and hope my letter finds you feeling a little better today. You are a very brave girl. I know those phantom pains are just awful and so wearing for you. My prayers are with you Debs. Stay warm and rest as much as you can.  Your friend sending gentle hugs to you.  Barbara From: Badkneesdebs <BadKneesDebs@...> Subject: Re: [ ] Re: Whiningfi Date: Wednesday, December 8, 2010, 12:24 PM  Please whine ...it is normal for us and we serve cheese with that twice a day! The whining goes along with the disease as long as we don't let it go on too long. I am a long timer here and have tried so many different medication combinations, in and out of the hospital on a regular basis. At this point I have been out of the hospital for 1 whole year. I want to jump for joy, but they had to amputateilt my right let due to complicationss from a TKR where the patella component cracked. I have severe phantom pain and horrendous neuropathy from the diabetes I received from the high doses of predenisone that I received over the years. I have been battling with blood clots. Now here is my problem.....I am allergic to heparin and coumadin......it makes me bleed from any and all scarss that I may have on my body. I started bleeding from my C sectons scars from over 20 years ago!!!!They put a filter in my vena cava as a treatment......if it works.....I think I should take an aspirin a day just in case, but I tend to get ulcers. This is why I usually stay quiet on the board so as not to scare any members. This is a long hard road to travel and sometimes a very lonely road but keep on posting and don't whine too long! You have great people to help us all get over those humps in life! Well, I have to pass out the winter coats to my cabana boys around the pool. South FL is seeing temps in the 30's & 40's.......Brrrrrrrrrr Now THEY do some whining!!!! Gentle, warm weather hugs.............. Debs in FL [ ] Re: Whining Whine Away , we can all relate. I just got out of the hosp myself, was put on massive doses of prednisone (like shots of 125 mgs), then tapered to 10ng when I got out (about a week now), so aside from the bloot clots/pleurisy my hips began bothering me too, very badly. After discharge and daily clinic visits to coumadin clinic, I finally get to Rheumy and she offers me a shot of prednisone in my hips for bursitis after JUST telling me my calcium is thru the floor from the prednison, its at rock bottom!! She is telling me to take calcium with vit d three tines a day for the next 3 months. She says dont take it more than 500 mg at a time, because your body doesnt absorb more than that at one time. So I ask her WHY she would offer me more prednisone? Her response: Thats all there is to force down the inflammation, besides Motrin, etc. There has got to be a good balance, prednisone is dangerous in large amounts to your bones. I want out. I am back to 5mgs, lets see. Gained 5 pounds (RATZ) too. Try poultices, heat up the herbs (comfrey is good, get it in a health food store) on a piece of cotton and tape them over your hips. Also, heat up the linament (like Tiger Balm), not hot, but very warm. A Heating pad will do as well, but not with the heated linament (cause it can burn your skin). I try both Ice and Heat when they flare. I need all these drugs, but I hate them too. Now, I am on coumadin for 6 months and they took away all leafy greens/Vit K so thats all I cook with and eat alot of. There has got to be a better way. I remember my grandmother used horse linament (which is VERY similiar to Tiger Balm). Also, if there is a Chinese pharmacy in your town, try TEET DA JOW PEI,its a chinese linament, very good. I am investigating more and more Chinese and Ayurvedic remedies (like Tumeric Powder in hot milk). I am convinced that there is a better way. You cant take tumeric with coumadin though, so I have to wait 6 months. I check and double check on the herbs with the meds. So, whine away, we understand. I hope you feel better.....laying in bed is necessary, but too much is bad too. So get up, move your legs, shake em out, stretch em, walk a little, then go back to bed, you need to move to live too. Fondly, OKD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2010 Report Share Posted December 8, 2010 Debs, I'm glad that you're still hanging in there, in spite of RA. That's remarkable that you've been out of the hospital for an entire year. I hope this continues, with no more hospital visits needed. You are a very strong lady, and I admire you greatly. In spite of everything, you manage to keep a positive attitude. Sue On Dec 8, 2010, at 12:24 PM, Badkneesdebs wrote: > > Please whine ...it is normal for us and we serve cheese with > that twice a day! The whining goes along with the disease as long > as we don't let it go on too long. > > I am a long timer here and have tried so many different medication > combinations, in and out of the hospital on a regular basis. At > this point I have been out of the hospital for 1 whole year. I want > to jump for joy, but they had to amputateilt my right let due to > complicationss from a TKR where the patella component cracked. I > have severe phantom pain and horrendous neuropathy from the diabetes > I received from the high doses of predenisone that I received over > the years. I have been battling with blood clots. Now here is my > problem.....I am allergic to heparin and coumadin......it makes me > bleed from any and all scarss that I may have on my body. I started > bleeding from my C sectons scars from over 20 years ago!!!!They put > a filter in my vena cava as a treatment......if it works.....I think > I should take an aspirin a day just in case, but I tend to get ulcers. > > This is why I usually stay quiet on the board so as not to scare any > members. This is a long hard road to travel and sometimes a very > lonely road but keep on posting and don't whine too long! You have > great people to help us all get over those humps in life! > > Well, I have to pass out the winter coats to my cabana boys around > the pool. South FL is seeing temps in the 30's & > 40's.......Brrrrrrrrrr Now THEY do some whining!!!! > > > Gentle, warm weather hugs.............. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2010 Report Share Posted December 9, 2010 Deb: You have a terrific attitude about the whole ordeal, I must say! You can teach us all alot. Are you saying that the prednisone might have caused your neuropathy too? Usually that can come with diabetes. Folks, there has got to be a better way. Prednisone is the angel and the devil all at the same time....the more you read, the " scarier " it becomes, Prednisone also destroys your adrenal glands, so they cant function on their own. I read yesterday it takes a long time at a SLOWWWWWWWW taper (down to 1mg) to get off prednisone, but if ou have chronic inflamm, do we ever get off it? Does ANYBODY ever get off the RA Merry-go-round? Has anybody EVER been cured of it? What is the longest time anyody has been in remission, does anyone know? OKD Quote Link to comment Share on other sites More sharing options...
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