I am a new member to wehavelupus.com, I am a bit nervous joining as I have not joined a group on the internet. My Aunt B actually told me about this link and thought it would be very helpful for me. I have many medical issues starting since I was 8yrs. old. I was diagnosed with Reflex Sympathetic Dystrophy affecting my left leg. After 8 years of in&out of hospitals, over 30 nerve blocks and a bleak diagnosis that the leg should be removed my parents strong religious beliefs decided to trust in God and move forward with a Radical Sympathectomy in which they removed part of the nerve affecting my left leg with excruciating pain. I was finally able to walk and strengthen my leg, alot of hard work. However, Arthritis and Fibromyalgia struck me down at a young age of 13. I did well for a little while but my body just weakend. SLE Lupus was always on the back burner as a possible diagnosis and as long as I have known I have been tested for Lupus and Lime disease. Left bewildered and confused and after many tests, flare ups, symptoms, Rhematologists, constantaly in and out of my doctors office, all different types of meds. When the diagnosis of SLE Lupus was finally given, I was relieved because I was really starting to feel there was no hope for me and that I must be "nuts". I was constantly in and out of the hospital, with a laundry list of events, migraines to the point of throwing up, gastro issues, excruciating pain in my joints, butterfly rash which my husband calls "Bat Face", neuropathy, Pleurisy and so forth. I believe many of you can probably relate! The flare up that have been in for months has been up and down, many downs- diagnosis of pleurisy, collapsed lung, needed O2 at night and as needed throughout the day, High doses of prednisone in which I gained 30 lbs in 3 weeks, was throwing up everynite and day, had to have an emergency endoscpopy only to find out I had 3 more ulcers on top of the 3 I had, caused by the prednisone. Was able to find a wonderful Pulmo doc, so when the next pleurisy bout comes along I will have to have IV meds.
So much more to tell, but I am very thankful for my wonderful Aunt B who told me about a friend of hers who is on this site who has lupus and I felt encouraged.
I look forward to hope that I am not alone in this, encouragement, advice, some distinctive answers and just talk. Thank you for listening ~ J[/COLOR][/FONT]