Thank you for your support of the article on Lupus! It is hard to be clear with a reporter in just a few minutes, on such a complex disease but I did my best. I take 24-26 different medications for the treatment of Systemic Lupus and Sjogrens, some more than twice daily. In addition to that regimine I take supplements that are safe, tylenol, vitamins, etc. It is expensive and I have to rely on samples, as I am in the GAP with Medicare D. I am so thankful for the healthcare that I have received and thankfully SS came through before my ex-husbands COBRA ran out. I have not had significant gainful employment in well over a decade. I was able to travel with the Lupus foundation and show the massive amounts of pills, inhalers, etc. that I have to administer each day. I went and looked my best for that day to demonstrate that Lupus and other auto-immune diseases does not always "look sick." I don't know how much of a difference it made, but every voice helps. I encourage anyone able to write to your political leaders or to become an e-advocate for this dibilitating disease. I was also invited for an interview for "Focus Atlanta" in March with Keisha Williams, a rotary club in GA, my local town publication, and neighborhood newsletter. When I am able, will talk to anyone that I can on behalf of all lupus patients and hope I always represent us well.
I also have herpes zoster, severe osteoporosis needing Forteo injections, heart, lung, neurological involment, digestive/stomach, fevers, severe fatigue, depression, daily neuralgias, migraines, TMJ, cataracts, chronic pain, the lupus "brain fog" fever, and on it goes....
I better get to bed. I am thankful I found you all.
Clickable: LUPUS INFORMATION & LUPUS RESOURCES.
Co-Moderator: Lupus and CFS Forums