Anybody suffer from Lupus

wannaexit

Wondering if any poster has Lupus and how they cope. Thankx

belbab

There is a poster I know on this board who is diagnosed with Lupus. I will draw her attention to your post.

I also had a sister who died with Lupus. The doctors had her on prednisone, I think that killed her.

I also knew a neighbour lady that got it, she moved away, but the last I heard she recovered from it, spontaneously, on her own.

belbab

wannaexit

Thanks Belbab! And sorry about your sister. There have been some strides with Lupus lately but it is still an insidious disease.

cognizant dissident

Hey Belbab

I didn't know that about your sister! Learn something new about people every day.

I'm the poster that Belbab is talking about Wannaexit. I was diagnosed about 5 years ago, but had it for a couple of years previous to that, misdiagnosed.

I do take medication everyday, and try to keep my stress levels down since that makes flare ups worse. I just try to take life one day at a time and don't sweat the small stuff. There are days when I have a fair amount of inflammation and pain and I just resign myself to the fact that I will do less on those days and won't be able to get everything done I want to get done.

I still find plenty to enjoy in life and try not to let it keep me from doing anything I really want to do. I may have to modify activities a bit for my comfort level, but try to find some way in which to participate in things I want to do.

wannaexit

Cognizant, thank you for sharing. Stress seems to be a big factor in those nasty flares. Your attitude is very encouraging. I needed this today.

((((((((hug))))))))))

cognizant dissident

For myself, I've realized that stress is one of my biggest triggers. When I was first getting symptoms I was going through an incredibly difficult emotional stress with my family and at the same time trying to get a nursing degree which is also an an extremely stressful job. I came down with a nasty virus at the hospital that triggered the first symptoms but it went away after a few months and I was diagnosed with viral arthralgia.

Then about a year later, I injured my back, and had to leave nursing and college altogether and rehab for six months. At the end of it, I had a full blown case of Lupus but was misdiagnosed for another year and a half. After I got a proper diagnosis and medicine, I went into remission for a couple of years.

Then I left the JW's, which was very stressful in a way due to all my family being in, but released me from all the guilt and pressure of never being good enough and never doing enough. I took up meditating to help me deal with stress and illness and it has proven to be very helpful (and guilt free). I would recommend it to anyone who has a chronic illness. Many doctors use it in their practice with chronically ill patients at pain clinics. That's how I got exposed to it in the first place.

I have had a relapse in the last year when I was going through my divorce and a rather nasty court process with my ex. He was totally unsupportive of me when I was ill. So that was like having the stress of an operation to remove a diseased appendix but in the long run, I'm better off, because I have so much less stress in my life with him gone, but I was off and on prednisone 3x last year while I was going through it. So far this year, it looks like I've got my symptoms back under control, although I did have to double my regular medication to get off and try to stay off the prednisone. Hopefully, I'll be able to wean that back down after a year or so.

Other triggers I have, that you may or may not notice for yourself, is the weather extremes, of hot sun or cold, cold air. I do have to stay out of the mid day sun in the summer and bundle up more in the winter. Viruses also trigger it. I get a flu shot every year and try to stay away from sick people. I do find it helps. Hormones seem to be a big trigger for me. I tend to get a little mini-flare before my period. I have to try and rest more and take it easy and not get too emotional about anything. (Latest research is verifying the hormone connection and also that women on the pill tend to be more likely to get Lupus, so you might want to consider that if you are on the pill).

I also have a few allergies that tend to be mild triggers. I'm allergic to wheat and some perfumes and synthetic fragrances. Basically, anything that will trigger your immune system will trigger Lupus and all of the things I've mentioned above, including stress, sun and cold have been proven to affect the immune system.

Hope this is helpful, if you want to chat privately by pm, I'd be more than happy to start a little on-line support group with you.

Cog

wannaexit

thanks cog! you have a PM

wannaexit

Hi Cog! i've resent the PM :)

Anybody suffer from Lupus

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