Hello...nice to meet everyone.
Hi. I'm Heather. I currently live in California in the Bay area, but I am moving back to the east coast next week with my family. I am 41 and have been diagnosed with Lupus SLE since 2012, however, I've had it longer.
Lucky for me, as I write, I'm not on any medications other than thyroid. I take Prednisone when the flares become pretty intense. Mostly, when that happens, I just sleep a lot to escape the pain and discomfort. I really hate this disease. It has sucked the life out of me almost. At least my social life. I feel it's taken a lot from my children as well. I have 3 who are pretty young. 11, 7 and 5. I worry A LOT that I won't be around to see them grow. My fatigue makes me so weak sometimes that I can't play with them or do simple things like make dinner. We are moving to the east coast so I can be closer to my mom and she can help when I have flares. Ever since we moved to California, 6 months ago, my flares have been really bad and more frequent. What used to trigger my flares were hair dyes..usually the cheap kind from the stores,but I'm too scared to try anything with dyes even at the salons now. Since we've been in Cali, I've been under considerable stress and I have noticed whenever my hormones change, I will have a flare. Especially around the time of my period. For the most part, I just deal with it as much as it sucks. I hate being "ill". I've never really been a person who got sick much until this disease came around in 2009. On top of the Lupus, I have vitiligo and low thyroid. So it's a double whammy when I get tired. I have noticed a lot that my Lupus gives me costocondritis, shortness of breath, chest pain, fatigue and severe migraine like headaches. Since I stopped coloring my hair, I haven't had any of those. However, I noticed that I get irritated easily and short fused more often. Sometimes, I can't get my words out correctly, although my parents keep telling me its "old age". lol.
I really don't want to take meds as they cause more harm than not. That and God.
I read recently that there are new clinical trials out for Lupus patients and they are looking for subjects to try investigational meds on. I'm not ready to be a guinea pigs just yet. But hoping a cure or better med will come out of that study.
I look forward to hearing and reading everyone's story!
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