Hi to all,
I was first diagnosed with lupus back in 1988. At that time, the first rheumatologist I saw gave me 5 years to live. He got promptly fired! Obviously he was so wrong!
In my case, lupus is hereditary. We lost my younger cousin to complications of lupus and diabetes. She was 1 week shy of her 37th birthday. In my case it has damaged my lungs and cost me about 60% of my lung function. In hers, she died of her 10th heart attack. The link for us is our shared paternal grandfather. His oldest sister died at age 22 of "heart problems." He was the youngest of 9, and was quite young when she died. We both showed the first signs of lupus when we were each 5 years old. As I am 11 years older than she, we weren't really involved when she was going thru the initial symptoms I am sorry to say. Since I was 35 when I was diagnosed, there was a lot going on in those years. My cousin was 33 when she was diagnosed, and only then, because I got her in with my rheumatologist. We were both ana negative, and never have/did show a positive test. Our lupus mirrored each other except that it hit my lungs mostly, and hit her heart. I have survived a lot of health battles and am doing the best now I have in the last 50 years. The journey has been long, but I am still here. I am thankful for the medical team I have, and the family support I have. Many are not so lucky.
I have been on disability for 20 years. It was hard to get that approved from my employer, and then to get my SSD. I was lucky to have a super attorney who helped immensely. In the middle of my appeal of the second denial, I had a severe reaction to solu-medrol and went into steroid psychosis. My attorney had to do a lot of it on her own as I was not able to help her much. Fortunately, the judge who heard my appeal, had a daughter who was graduating medical school. With our permission, he had her also review my file. Within a couple days, he had approved my disability, and made it retroactive to my initial disability date.
I have been on methotrexate for nearly 17 years, and on high dose levels for over 11 years. I am blessed with a rheumatologist who was willing to go to an uncharted path when that was our only option to control the disease. At the time, we could not find anyone who had done what we had to do. Due to the steroid psychosis, I am not able to handle higher doses of prednisone, and we had to go to other channels of medications. So far, my liver has held up, amazing to many.
I share my home with my 6 yo cat, Mikey, and my 21 mo old mini dachsie, Molly. Currently, I have 2 foster pups from the same dachshund rescue from which Molly came. I started with 4 foster pups, and 2 have been adopted. [YES!!!] Mikey is superb with the pups, and serves to nurture them. Having them used to him, makes them open for more home options. In this current economic crisis, all the options we can give them, the better. When I was fostering kittens, Mikey was my "Mr Mom" guy. He is one of the unique cats that will nurture whatever I give him. The pups accepted him as part of the home life and he enjoys them. He loves to cuddle them and the closer the better. I've dealt with animal rescue in one form or another, for most of my adult life. It has been a long time since I have had to house train puppies, and this has been a huge learning experience for me! Molly was 10 months old when I got her, so she was primarily trained. Having to start from the beginning with Frankie and part way with Bitsy, I have learned so much! Supplies were totally different 35 years ago when I had my last 8 week old puppy.
I love to garden, and have found that my tolerance for the sun has improved in the last few years. I do get some aid there with my greenhouse. I grow my own veggies as well as a lot of flowers. It helps my sanity by even being outside in the shade. I also have found a major health improvement with a switch 4 years ago to gardening organically. I also feel better when I am eating fresh veggies out of the garden or going to the local weekly farmer's market. In the rescue where I got Molly, the dogs are given veggies for treats. As a result, Molly will even ask for treats such as brussel sprouts, beans, lettuce, chard, and so on. I was amazed the first time she asked for a brussel sprout, but she loves them. She even likes chard on which I have used balsamic vinegar! As a result of her influence, the pups eat veggies willingly as well. That Mikey likes most veggies also influences them. Much better for them than some of the commercial flour based treats. My family and friends are impressed by their healthy choices.
I look forward to being able to share some of the knowledge I have acquired thru my years of living with this not so welcome companion. I am also looking forward to learning from all of you.
I chose Pink Pearl as it is my favorite rhododendron. It is one of the few which prefer shade to sun and has lovely, huge, true pink flower clusters. I think it is fitting for lupus. I live about 30 miles east of Seattle, Washington, in the Snoqualmie River valley.