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Medical Forum / Diseases and Disorders / Lupus / December 2005New to the group
Hello, I was finally diagnosed about a year ago with SLE after years of increasing pain, problems. It took a move and a new Doctor. My old Doc treated my back pain, but never tested me, just supplied my Oxycontin and upped as needed. Finally when we moved to the Seattle area and I found a new Dr she decided to test my blood given all the symptoms I had. Very painful joints, skin rashes, not sleeping well, tired all the time. I was fired because of poor job performence (I was a groundskeeper) My list of other symptoms was lossing more hair then normal, fever of unknown orgins, bad memory, poor concentration. I was what I now know to be in the middle of a flare, and I could not bend my knees without screaming, and after my knees flared up my hips were next. My blood tests have repeatedly shown very high ANA, and never have I had a negative ANA, but I heard that has happened in other lupus patients. Over time after diagnosed I realized that I probably have had lupus for a long time. I'm now 42. Anyway we moved here Jan 2004, and after treatment and rest I thought I might try to go back to work and got hired on with a landscaping company. Oy boy let me tell you after ever an hour I was in agony, but I was determined to keep trying, and after a 5 hour day I went homes and cried. I realized my working days we probably over and called to tell my boss I could not do it. It took me 2 wks to recover, so being the stubborn woman I am I thought i'd try just working for myself at a slow pace. While I got fired my partner got transfered to a mobile home park, one we always wanted to be at. She is one of the managers here, anyway it is a 55 and over park, so I thought I would take on some yards, lots being small. I still found I could not work much, and after just 2 hrs of work I would find myself in bed the rest of the day. It's hard because if I could have kept up I would be making an excellent salary and boss of my own business just here in the park. With 350 lots and most folks here have a hard time gettng good help I was a very welcome resident, and many wated to hire me. This work, and the fact that all I've done before this was housecleaning was all I knew, so I had to tell my clients goodbye and file for SSD which I did last month. I know most likely I'll get turned down and ths could take yrs, but on top of my lupus I've been diagnosed with arthritis in the knees and back, old back and neck injury, and my Rhuemy says I also have fibromyalgia. Anyway I've been reading what others like me are going through, not only here, but the social security disability forum. I'd like to hear all your stories, especially those on SSD or trying to get it so I know what to expect. Thanks1 Lakhotawinya (snipped a lot) > I thought I > might try to go back to work and got hired on with a landscaping > company. Oy boy let me tell you after ever an hour I was in agony, but > I was determined to keep trying, and after a 5 hour day I went homes > and cried. and > and after > just 2 hrs of work I would find myself in bed the rest of the day. It sounds like no one warned you that sunlight can be a major problem with lupus. There are some things you can do if you aren't too light-sensitive (sunblocks; layers of clothing with gloves, long sleeves and a wide-brimmed hat; stay out of the sun between roughly ten in the morning and four in the afternoon; Rit Sungard dye to increase the SPF of your clothing). Anyway, welcome to the group; you'll find lots of help here. --Bill Thompson Hi Bill, No one did, but after doing my own reasearch I figured it it out. Connecting the the dots after living in Eastern WA, aka desert country, and being in the sun 8 months out of the year and the flares being worse there. So you would think things better here, more clouds less sun, but untraviolets of course get through the sun, but not as bad. Thanks for the welcome. Lakhota > No one did, but after doing my own research I figured it it out. How much information did you find about UV? Sunlight is the worst source, but you can get it from fluorescent lighting (those &#%!* tubes, plus quartz-halogen lamps, sodium-vapor street lamps, even TV and CRT screens). Fortunately those sources give less UV than the sun, so you may not be sensitive to them. Window glass and sunblocks don't stop all of the UV light. They're good against the more powerful UV-B wavelength, but not against UV-A. > Connecting the the dots after living in Eastern WA, aka desert country, > and being in the sun 8 months out of the year and the flares being > worse there. So you would think things better here, more clouds less > sun, but ultraviolet of course get through the clouds, but not as bad. Clouds cut down on the UV by about a third (I used to get sunburned on cloudy days), Also UV is reflected by water, snow, sand and concrete, so you can get an extra dose by standing on or near those surfaces. --Bill Thompson Hi and welcome to the group. I don't mean to wrap up all of your lupus flare problems in one problem but... it sure sounds to me like you are photosensitive. Do you have the same problems if you work indoors only? It may not be that you can't handle physical work but that you can't handle physical work that exposes you to sunlight. When I first flared badly I didn't make the connection between my daily bike rides and the flare. Since I've been a) not working in "the real world" and b) being very careful about my UV exposure, I have been overall much healthier with very mild flares. Being on plaquenil seems to have made a huge difference as well. Yet I can put in an 8-hour or more day of painting walls (we recently moved and are prepping our old home for sale) and other very physical work. But don't ask me to go out and work in the yard for more than 10 minutes - i'll end up with rashes, migraine and a low-grade fever by the end of the day. Part of the problem (not for you it sounds like) is that sometimes people don't react immediately to sun exposure but start feeling bad 24-48 hours later so they don't connect the dots. Just some thoughts on helping prevent further flares. that said, it's obvious that you have seriously painful symptoms and I hope that you will qualify for SSD. I have not tried for it so I know very little (okay, nothing) about it. again, welcome to asl - this is a wonderful group of people and if they can't answer a question directly, they will find a way to point you in the right direction. I'm so glad you found a doctor who was open to diagnosing lupus. So many are not. best kcat Hi kcat, I get the same problems working inside, for instance if I do more then some light house work my joints will get more painful, and even then I have to rest after a short time. I have to take some notes now and wait for summer to see what kind of things I should avoid more. I take myself to park gym which is only down the street in our clubhouse for my wokr out. I have to push myself otherwise I'd be gaining, as it is I've only lost 6 lbs in about 4 months. I have to hold myself up while doing the treadmill. I have had a fractued skull (at 16)which the force of the hit damaged my neck, (this was not diagnosed until I was in my 30's.) it would take too long to list the damage that did, and the Dr's wondered how I walked around after that. I went to school, but my grades took a dive, and I could not see the black board anymore from where I sat. Needless to say I did get taken to an eye Dr and get glasses. My right eye recovered almost all my vision after a number of years, but my left has never recovered much. So you see many of my problems are beyond lupus, and it's hard to know which causes which problems. Thanks for your welcome, and a way to connect some dots! LW > I get the same problems working inside, for instance if I do more then > some light house work my joints will get more painful, and even then I [quoted text clipped - 13 lines] > problems are beyond lupus, and it's hard to know which causes which > problems. Hello LW and welcome, I read your posts and the replies and I understand why you're applying for SSD. Since I'm in Canada, I can't help much with that. The impression I get from reading other newsgroups, is that they routinely turn people down at first go , unless the person's almost dying, so leave some things for the 2nd step (whatever that is) for them to reconsider. (would be an idea to run by the newsgroup that's helping you). For instance, the employer that fired you, if you wrote or called and explained that you now have an explanation for why you were unable to perform your duties properly (ie SLE /Lupus and how the fatigue affected your performace) if they would kindly write a letter for you stating " You were a good and conscientious worker, but unbeknowgst to either of you, an illness had befallen you which affected your ability to perform the duties as required. And they are very sorry that happened to you. I wonder if a letter from an ex-employer would pull some weight with SSD? In addition, if you framed a letter saying that you performed part time duties for residents of a mobile home park and because of your sun sensitivity causing you pain and fatigue you could barely get through a few hours and working under UV exposures (inside lights or outside) even for a few hours had you flat on your back for the rest of the day, if not for days. Then ask at least some of the residents to sign the letter, would that also help? Just some ideas, to run by the other newsgroup. Hugs and welcome again. J I'm not sure what if anything an ex-employer could do, but the residents of the park I worked for would help if ever needed, and many of them have seenme in great pain, so if it comes in front of a judge I would think them as witnesses or letters as you say might hold some water. If I have to get a lawyer that might help giving her letter from the residents that are always asking about how I am. Some have asked my partner what is wrong with me when they come into the office to pay rent.There has been a couple of times I had to call my partner to come and pick me up because I could not pull my garden cart home as hard as I tried I just could not go another step. Anyone that knows me knows how independent I am, so calling for help they know I had to be in pain. Anyway thanks for the idea and welcome! LW Welcome to the group! Good luck on the SSD. I have both SLE and fibromyalgia and life is interesting most of the time. This group has helped me and it is full of info and or people who will find an answer if they don't already have one. Once again Welcome to the group. Hugs, Sherry HI Sherry, Thanks for the welcome! LW Hi and welcome! I was the head gardener of a private Victorian estate. I know all about working in the heat and sun and what it can do. At least I had some young guys to do the heavy work and that left me to the fun stuff. Now I hardly spend any time in my own yard and I only lecture on gardening. Bev > Hello, > [quoted text clipped - 43 lines] > > Lakhotawinya |
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