In a couple of weeks I'm seeing a new rheumatologist, I've avoided all doctors for nearly 2 years till this past summer when I got a bad rash and the flare I had been in started getting worse to the point that I need some type of medical care. In preparation for this visit they sent me paperwork to fill out, including the usual questions plus specific questions regarding various symptoms and so on, as I was filling it out then checking it over, I found myself over whelmed at how much is wrong with me, how many symptoms I have, some old and constant, some new ones. I also listed all the diagnosed illnesses related to lupus, from APS to Vasculitis, I am 53 years old and embarrassed to have this much wrong, I didn't even list the eyesight problems or the increasing fogginess. Its no wonder doctors think I'm crazy, I believe I've been medically mismanaged for several years, not to mention over medicated I'm only seeking medical care now because I'm sicker than I've been in a very long time and I know frothy bloody urine is never a good sign, along with the monster headaches, and other things, I thought of going to an ER, but I hate the way I'm treated when I tell them I have lupus, I hate that condescending disbelieving attitude I've seen all too often, for the record every time I've gone to the ER I've had to be hospitalized for things like pulmonary embolism, stroke, respitory failure, pneumonia, GI Bleeds, you would think that would be like the HA I TOLD YOU SO moment, It just makes me even more distrusting, now looking at this list of symptoms and diseases that stem from having Lupus, I just want to pull the covers up over my head and call it a day. Its almost as if I'm ashamed to have to admit that I'm this sick, this sucks big time.
Don't be embarrassed - many people have that very long list and DON't have lupus- you can get quite a list just from getting older- not all of us age gracefully :>) I worked as a nurse and the average number of distinct diagnosis for a reasonably healthy geriatric - which starts in your 60's- is 14. You gotta just keep trucking
I'm 53 too with Lupus and kidney disease and when I hit 50 my long list of illnesses started. but don't let embarrassment keep you down and by all means from the ER if you need to go. Like Poobie said "not all of us age gracefully." Oh yeah I just added Diabetes to the list. Be encouraged.
I’m sorry, the list probably IS overwhelming!so is mine, the older I get. It needn’t be embarrassing as such, and your case and those of many lupus patients are very hard to manage or understand for non-rheumatologists. Your new rheumy probably can’t deal with it all at once, either. I think the ER is a good idea. Would it help to take friend or family? Keep going to the doctor, too. I got diagnosed with diabetes (from prednisone) and gout since June. Don’t let yourself be embarrassed, you are an important person. In our world, health is overly important, and illness can make people walk away in discomfort. That’s their problem.it doesn’t have to be yours.