Hi, everyone, how are you? I just joined this message board and was so happy to see others with medical issues like me struggling to be healthy. Here's a bit about me and my condition.
I have a severe case of lupus, arthritis, fibromyalgia, and Raynauld's disease combined, as well as numerous blood issues. The lupus has made me half blind. One day I will eventually go fully blind, the doctors say (but no one knows when, so I'm enjoying every day I am able to see.) I know it sounds scary, but it's ok- and if you are reading this and you have lupus too, know that I have one of the worst cases and yours will probably never get this bad. I don't want to scare anyone.
I've had lupus since I was 15 years old, in 1995. It's been very severe ever since then- in fact, the doctors didn't think I would survive past age 25, but here I am at 31, so the joke is on them!
When I had a blood clot in the retina of my eyes, I needed chemotherapy and I lost my hair. I have been on high dose prednisone for 16 years now.... and I ballooned up to 354 pounds at one point. I'm 5'11'' tall but still, it was a huge weight. I was very unhappy. It was hard to lose the weight because I can't exercise and I'm in a wheelchair a lot of the time. But in 2005, I decided to start losing the weight, and I finished in 2006. I'm now 189 pounds. I promise myself to keep it off, and hope I can encourage others with severe cases to do so too. You can do it! I have a lot of tips I hope i can share with the board. Right now I'd love to get to 160 pounds, which for me is a good weight at 5'11''. But I am also happy where I am at 189.
My 165 pound weight loss was done without any major exercise, since I'm too weak and medically unstable to exercise and I'm in a wheelchair most of the time. I'm proud of it, but frustrated sometimes with the difficulty of losing weight when I can't get outside and do stuff to cause it. Hunger is the enemy and defeating it is tough.
For others with lupus or fibro or arthritis, who may be wondering about my case, here is some of the stuff I've been through:
I also have what is termed "anticardiolipenantibody syndrome," which means blood clots keep recurring due to the nature of my blood, like pulmonary embolisms in my lungs. So they put me on blood thinner and that's hard to manage; I once lost half the blood in my body due to drug interation/over anti-coagulation. I had a hemmorhage, and needed 8 transfusions as a result. I normally have about 2 staph infections a year, which usually require hospitalization and IV antibiotics to treat.
When I was a teenager, I also had a case of hemolytic anemia that ended me in the ICU for 2 months. In addition to this I have fibromyalgia, which is immensely painful. I saw a few of you on the board have it too and I sympathize with you if you have it too. I have some stretching exercises which can help with pain which I have developed over the years. And as you lose weight, I have noticed it can help fibro.
In connection with my lupus, I have a severe case of Raynauld's disease. It is so bad that I need to move to a warm climate or I risk amputation of my fingers.
So with all this going on, the hospital is kind of a second home to me. I always keep a bag packed and ready to go there. The difficulty of being in and out of the hospital in relation to food is that... well, most hospitals don't have healthy food! I've been hospitalized about 8 different hospitals and only found one with a healthy balanced diet. Many times when I go into the hospital and they send me up a very fatty, unhealthy diet, with high fructose corn syrup in the foods.
It is hard to be stubborn and just keep sending it back, but I learned to do that.
I eat as healthy and as natural foods as I can. I am on food stamps which makes it kind of difficult, but I buy a lot of fruit and vegetables and lean meats, fat free milk, etc. I have to eat like I'm dieting all the time because I can't exercise without risking some major damage to my body; I was seeing a physical therapist but he came to the conclusion that the best thing I can do is rest. When my body is stressed under exercise, the lupus flares and attacks something in my body.
I joined this forum with the hopes that I can help other people who are on prednisone and other drugs which increase hunger find a way to help manage it and also to help avoid the horrible "moon face" that prednisone gives. There's some tricks to managing that too; I will probably make a seperate post because those tricks are complicated and lengthy. I fear I've rambled on too much already.
I've been at my current weight for 4 full years now. I am very proud of it. I am really hoping to help others while I'm here. Please feel free to add me on messenger or email if you like or if I can help with suggestions.
Intro: I have lupus/arthritis/fibro. I have some good tips, want to find others. :)
