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I hope you all like my User ID...I picked it because all the specialist I had to go thru to be told I have +ANA Lupus, I don't have Lupus, I have Lupus, I don't have Lupus. THEY ALL MADE ME QUACKED!!! And then today I was told by my Rheumatologist (for Fibro) that I MAY or MAY NOT have lupus because my titre's are so low. Personally, I don't think I have Lupus and no, I'm not in denial. There are such things as false positives and since every test came back negative for ANYTHING. I just don't agree with the dr. I should be one healthy person according to all the test they done. Yet it's all I can do to drag myself out of bed everyday, put on a smile and take care of my elderly patients. But I do it. I don't have any choice. I have bills to pay and no ones going to pay them for me. I have suffered with pain in every joint of my body every day of my life for as far back as I can remember. As a 4th or 5th grader, I even remember being put in the hospital and lots of different xrays and tests being done (low back pain). That was the first time I was told (or remember hearing) that I had growing pains and was probably just looking for attention since I was the youngest out of 6 kids (what the heck does that have to do with back pain?). The kids at school would tease me unmercifully because I couldn't run, walk, sit, play w/o being in pain. But I would do it just to show them I could and that I wasn't a sissy...and I would be crying the whole time. They called me Hypochondriac, lazy, sissy, weak...ect (and that wasn't just the students...the teachers did too). After I turned 20 (I'm 40 now)...it got worse. I've been to dr after dr after dr just to be given drugs and sent on my way. When the drugs didn't work, back I'd go, only to be given different drugs and therapy. When THAT didn't work...back I'd go. Then they'd try anti-depressants and whatever other therapies they could come up with (sometimes the anti-depressants did work) and every single time I would leave the dr's, I would leave with the feeling that they thought it was all in my head and they were just giving me drugs to placate me (like I want to spend $50+ per prescription on meds!). I even over heard one dr telling a nurse to give me a script of Lortab .5 (like that low dose is gonna help anything?) with 2 refills and not to accept any return visits from me on this issue!!! I picked up my purse, walked to the nurses station and told the dr that I wanted a copy of my chart TODAY and that I would be reporting him to the board of healing arts. I did report him and got a letter from them stating that they would check into it but I never heard back from them after than and calls were never returned. He is however still practicing and is in fact in my new drs building!

I know exactly where you are coming from! My family (not that i remember) ever treated me different because of my aches and pains. It's only been within the past 5 yrs that my health has gotten out of control and the past 4 months have been pure heck! I finally decided that all my drs were the crazy ones and were only trying to make me think I was. I quit all my drs and meds (13 meds in all!) and I have never felt better in my life! My short term memory probs have almost disappeared, my aching joints pain level is at an acceptable tolerance, my feet/back/shoulders havn't hurt to bad for 3 wks and has been 5 wks since I stopped most meds. If you are on alot of medications, you might talk to your dr to see if maybe some of them can be DC'd or doses lowered or maybe theres 1 pill that can take care of 2 or 3 problems instead of 1 pill for each prob.

The one true friend that I had broke my heart 5 yrs ago (we speak now due to her children (my god children) but that's about it) when I found out she was a drug addict and had been hiding it from me HER WHOLE LIFE!!!!!! I knew that she dabbled in drugs (I did to at that point), but I stopped doing drugs and thought she did too. She just got better at hiding it is all. She is the only person that I had that believed in my problems and that I really had something wrong with me but that the drs were too unconcerned to figure out what it was. I worked because I had to. I didn't have a choice. I went to school because I knew w/o a diploma, my life would be harder than it already was. I understand where your friends and family are coming from when they say you're just being lazy, selfish, to 'buckle up' and be strong, to 'work thru it', yadda, yadda, yadda. All of us have been there and heard it. But when you don't HAVE anyone else to support you, you have no children so you can't collect welfare so that you can stay home and take it easy, when you can't get a diagnoses of anything wrong so you can draw disability, you don't have parents/family to live with that can afford to financially/medically support you...you have no other choice BUT to go to school and work. I know myself well enough that if I took a desk job so that I wouldn't be taxing myself too much...that job wouldn't last a month. I'm one of those ppl that just can't keep a job unless I'm interested in it (been there, done that). I've had my present job for almost 13 yrs. I lucked out in that I finally decided on the medical profession to work in, because everyone knows what my medical probs are and that they don't always show themselves on the outside. I've left most of my friends behind because like you said...none of them thought anything was wrong with me and the few friends I did have never wanted anything to do with me when I was down and not feeling well and couldn't participate in what they wanted to do. I have a few co-workers I hang with and they are all like me. They've got their aches and pains and don't feel like doing anything either, so we get along fine!!! I've learned not to discuss my health probs with outsiders (in real life) cuz they just don't understand nor do they want to. They think you should be just able to pop a pill and be on your way....fit as a fiddle. I don't even discuss it with my husband. He doesn't know half of my health probs or that I've stopped my meds. He's a blabber mouth and if he knows everything that's going on...he'll tell the whole world (his family, friends, co-workers). Welll...I know it's not right and that I shouldn't keep important health info from him but when you've spent your whole life defending your health problems to ppl that don't have the slightest clue to what's going on with you...I'm just not ready for his family to start looking at me like everyone else always did. I don't think I could take it. I use to tell him everything, until I found out he was telling his mom, kids, uncles, brothers, about my pap smears, mammograms and physicals...I ask him to stop telling them, if I wanted them to know I would tell them myself...and he didn't stop so I just don't tell him anything.

Most ppl don't understand. They don't like being around sick ppl because it makes them uneasy (especially if they don't seem like their sick) and it makes them realize how quickly life can be taken away from us.

I guess about the best advice I would have to give is to just 'keep on keeping on'. Understand that those that supposedly love you DON'T understand and probably will never have a clue as to what you're going thru. Just know in your heart that you're not lazy, selfish, depressed, ect and try not to judge them too harshly. If at all possible, don't discuss your health issues with those that are this way towards you and ask your mom to keep it 'mum' too. If they don't know what's going on with you, then they can't judge you, but chances are...they'll just find something else to judge you about. Keep your chin up and try not to let them get you down too bad. Take care and be safe.





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