Re: Tina to Maureen

[Guest guest]

Maureen, Welcome to our group. The pain I described was in late Sept. and Early Oct. It only lasted a few weeks and I am able to function around the house quite adequately now. But it left a very strong impression and, as you described so well, I have great fear of ever having to go through that kind of pain again now that I know pain meds don't do much. This pain is rearing its head tonight. "Something" is starting up at by biopsy site. Please pray with me that it might be some normal irritation from the disolving stitches that seem to never disolve, and NOT a new eruption of pg. I know it may feel impossible, but try trusting into the care of the universe. I think it is greatly illusion to believe that we are managing our lives. Going through these periods where one cannot work, or even manage daily self care sometimes, is very humbling ---- a sort of spiritual initiation. A minister

once stated, "You cannot fall off the edge of the universe". You are just as lovable and valuable even when you can't pay your own way by earning your living. I was forced to learn that it is true when I had cancer. You will always be loved (right here at this site, for starters), you will always live somewhere. It actually becomes very reassuring and even empowering once you start to get the hang of it.[Heeeee, heeee. Listen to how brave I sound tomight.] You most definitely are not the most powerful force in your own life. There is a world of wonder, a solar system, etc. supporting you, and you will be relieved to learn this as you withstand the most challenging events and circumstances. I had an amazing day today. Hour upon hour of profound lessons in surrender and acceptance. I attended a wonderful Quaker memorial meeting. I saw an amazing movie - Beethoven's Hair. And I had my women's spirituality meeting tonight.

Be well, dear ones, Tina pg '04Maureen Frostick wrote: Hi everybody. I'm very new to this, have only had the symptoms forfive weeks and was only diagnosed with erythema nodosum a week ago bya consultant rheumatologist. At the moment I am in a state of panicas the consultant I see isn't really interested or doesn't know how toanswer my questions, and to be honest not all of them are strictlymedical questions. I have lots of questions

and hope you will bear with me whilst I cometo terms with this.As I understand it EN can be a symptom of something else. I've onlybeen checked for sarcoidosis. I've asked my consultant whether itmight be an infection that could be treated with antibiotics orwhether it could be my tibolone HRT (which i have documentary evidenceto suggest it might) but he just says he believes it is a virus whichwill clear up alone and has just given me Naproxen andHydrochloroquine to help with the symptoms. At the moment they don'thelp at all so I'm also taking paracetemol for the pain and walkingaround with ankles and feet that look like balloons and are veryuncomfortable. At the beginning the pain was similar to the paindescribed by Tina. I couldn't stand up without being lifted out ofthe bed and sitting on the loo was excruciating. My hands and wristswere so sore they kept me awake at night. This subsided after acouple of

weeks (before the drugs were prescribed) and although myjoints are still uncomfortable and all the swelling is still there,most of the time I can walk around the house. However I am not mobileenough to go to work and am worried about losing my job. I'm alsoworried my boyfriend will get sick of being a full-time carer and kickme out of his home. Also my consultant warned me the hydrochloroquine and naproxen wouldtake a few weeks to start working but if they don't start by end ofJan he's going to give me steroids.What do I do about work?How do I find a consultant who will test for other underlying causesof my EN like cat scratch disease or streptococcal infection?If I tell my consultant I don't want steroids, in fact I don't evenwant the meds I'm on, they're not doing anything for the pain at themoment and I'm managing the pain without them, I'm worried he won'tbother with me anymore and I'll become known as

a time waster and leftto rot?If I don't take steroids my work my get rid of me for not followingthe docs advice as if I took steroids my symptoms would be masked andI'd be able to work (I tried it for the first week and they workfantastically but I don't want them long-term).Basically I'm terrified and felt very alone before I found thiswebsite. If I do have a virus, the anxiety I'm feeling won't behelping me to get better so I'm trying out reiki healing and alsoreflexology and would like to see a homeopath but these are allexpensive things and I won't be able to keep them up if I lose my job. When you talk about remission, does that mean EN NEVER goes awaycompletely, or that in MANY cases it returns?Should I be seeing a rheumatologist or is there a different medicalprofessional who would know more about this illness?I feel very selfish at the moment doing all the taking from you

fellowsufferers and hope that once I've calmed down a bit I will be able togive as much to this group as I'm taking from it at the moment. Tina I feel for you so much as I had a two week taster of what you'regoing through and was in tears about it everyday. I've always been acomplete coward when it comes to pain and am now having to confront mybiggest fear. I live in dread of it coming back and because when Iwas in that much pain no painkillers helped, I live in fear of itreturning. I have decided to get an AIDs test as I'm paranoid I may be HIVpositive now but most of the tests I'd like to be done, have to beagreed to by my consultant or GP and they just don't seem to want todo them, even privately paid for. I don't understand their apathy. I'm, a 43 year old who was perfectly healthy 6 weeks ago and now I'mcompletely unable to work. Surely our government doesn't want to bepaying for people to stay at

home and not paying any taxes?! I'm inthe UK by the way. I don't have a great deal of faith in our healthcare system as it's not the first time I've been disappointed by it.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.