Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Hi Anne, Please , please don't give up. I know only too well about the pain factor but I do not suffer with what you have. I do have a 20 nearly 21 yo daughter who is my rock as well and I know how bad she would suffer if I did something too myself. You have to deal with a hell of a lot so you must be a strong person. Please remember that. I always stand my ground with doctors. I will not take any of their bull when it comes to MY body. I can be very, very rude to them but I know what hell I am going through so I feel they should take notice of every thing I say. If they do not act on it immediately I let them have it again. This has never let me down yet. I know I come across as a very arrogant and rude person but in the very beginning of all this many years ago I could not get doctors to listen. I suffered so bad for such a long time I thought I was going to die every minute of every day. I know doctors are not perfect but if they would all have just a bit more compassion then they do have then I feel there would be less suffering in this world. Let them put you in hospital and you take a break. You get looked after for a while and take advantage of it. I am sure your daughter would worry a lot less if you were in there. You do not mention a husband or partner. I hope there is some one else there to help you. Although they can be more a hindrance than help some times. Stay positive please. Hope to hear from you again soon. Fellow sufferer. Debbie. (Australia) -------Original Message------- From: Rheumatoid Arthritis Date: Thursday, 07 March 2002 02:56:50 AM Rheumatoid Arthritis Subject: Info and Feedback The subject line says it best..I've been for the most part a silent member to this list, but since returning from my primary today I decided perhaps my misery might be of help to someone here..I learned 2 years ago I was honored to be listed in the ranks of having RA.That was the best news I have had since that day. For the past 2 years I had pain, sores, opened wounds on my legs, below the knee.the pain is beyond description, I call it my living hell.I have been diagnosed with Pyroderma Gangrenosum and have already gone through 3 surgical debrisements and skin grafts without any positive outcome. My wound care doctor and rheumatic doctor decided "remicade" is for me.It used for moderate to severe R.A. and has recently been discovered it works marvels on pyroderma and severe wounds and lesions that will not heal. During my first infusion of remicade I ended up flat on my back on the floor in the doctors office.it seems remicade is a bear on a patient who has asthma. They had to inject me with a steroid and benerdryl to get my breathing back to normal with oxygen,then continued with the infusion. My RA still has me in horrid pain, but after the 3rd infusion of remicade the pyroderma on both legs are reducing in size as well as amount of pain. Last week I woke screaming from the pain, the infectious disease doctor did a biopsy on the legs and the results came back that i now have tested positive for M.R.S.A which is the newly dreaded illness nurses and care givers are concerned. it can be contagious, it is painful and they now are deciding what to do with me, either put me in the hospital with anti biotic iv's or allow me to lock myself in my house and have a line put into my arms for the iv anti-biotic drips to be given at home with a visiting nurse. whats my point in boring ya'll is, do NOT allow remicade to be given if you have opened wounds and skin infections. The doctors are *positive* the remicade was the factor and more harm than good was done to me. I am a 47 year old white female, and I will confess I am so tired of hurting, I forgot what it is to have a 24 hour period of no pain. Several times I have seriously thought of taking my life..It would stop my pain, it would make life easier on my daughter who at the age of 19 has become my rock.If anyone has experienced what I have please write me, I need advice, I need advice from someone who is living the hell I am.I am seriously getting to my limit with these doctors. There is an expression, "they don't know their as$ from the elbow". I hope someone here can suggest what I might look for in a new doctor perhaps. I live in south FL. Any advice would be appreciated and I hope I might have helped or at least made someone here aware of what our illness does...Anne Quote Link to comment Share on other sites More sharing options...
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