X-Post -- Letter to a friend (long)
I answered an e-mail today from a college friend who has lupus, who now teaches at a university overseas. It sums up so much of what I'm dealing with, being dually diagnosed with lupus and fibromyalgia, and on Social Security Disability. I already see a counselor I decided to post it here. It sums up how I'm feeling, and how I imagine many of you feel, or have felt, who have tried to overcome disability from these dreaded diseases. I already see a therapist to help me deal with this, but I thought it might be helpful to someone else, who may be feeling the same way.
You live a great life! I had envisioned myself doing what you're doing, traveling the world - until I was dealt the lupus/fibro blow. I know you deal with the same issues, at least for lupus, but it seems as soon I make progress, everything I'm trying to do is derailed by one cir****tance or another, or the dreaded major flare. The pain has become significantly less severe with the weight loss, To date, I have lost 245 pounds, the absolute maximum my doctor will allow prior to surgery. About 15-20 pounds of the weight is skin, and after surgery to remove it, I will weigh between 140 and 145. The fatigue is incredible! Every day, about 3:30 or 4:00, I am barely able to hold my eyes open, and I have to go take a nap, usually for about two hours. I am trying not to lose hope, but it seems my dreams to overcome SLE and Fibromyalgia and be productive again are slipping quickly beyond my grasp. I'm on hiatus from school this year, to get the loose skin on my lower body removed from the weight loss. It will be a staged process, with liposuction first to remove the fat deposits hanging onto the loose skin, then a thighplasty, to remove the excess skin. Each healing process is about 6 months, barring complications. It's a medical issue, as no matter how carefully I disinfect my skin and make efforts to keep the folds dry, I end up with cellulitis or cutaneous yeast infections. I am building an antibiotic resistance, as this last infection,about three weeks ago, I had to use two different types, in order to competely eradicate the infection. I should own stock in Johnson's Baby Powder and PhisoHex (it's still available to doctors for surgical scrub, and my doctor gets it for me). I found this great lotion that's made by Vaseline, Moisture Rescue, and it's better than the old Vaseline Intensive Care. In spite of all I do, I still get the infections! I was so scared it was something bigger, I went and got tested for AIDS! Of course, that was negative. So, that's what's going on with me, and it seems my dream to become a Bariatric Registered Dietician, will have to go wherever it is that dreams unrealized go, as it seems to no longer be a dream deferred. I'm trying my best to deal with this and not get depressed. I've always been one to set my goals very high, and I've not had a great deal of difficulty in attaining them, but perhaps I've met my match with SLE and Fibro. I hate to think of myself as a pitiful soul who accomplished great things in the past, but is now a "has been". An accomplishment for me these days is being able to get out of bed, and make it through the day without "lupus/firbo fog". I'm so afraid that this disease will rob me of my mental faculties, and I have even gotten lost when taking a very familiar route. I also dread being afflicted with the "family demon" - dementia. Unfortunately, that's how things stand with me. I'd give more than a million dollars to be rid of all this and go back to life as it was. Sorry I didn't have better news, but as the late, great Jack Gibson used to say on the radio - "That's the truth, Ruth". Hope the upcoming school year goes well for you, and that you are flare-free!
You live a great life! I had envisioned myself doing what you're doing, traveling the world - until I was dealt the lupus/fibro blow. I know you deal with the same issues, at least for lupus, but it seems as soon I make progress, everything I'm trying to do is derailed by one cir****tance or another, or the dreaded major flare. The pain has become significantly less severe with the weight loss, To date, I have lost 245 pounds, the absolute maximum my doctor will allow prior to surgery. About 15-20 pounds of the weight is skin, and after surgery to remove it, I will weigh between 140 and 145. The fatigue is incredible! Every day, about 3:30 or 4:00, I am barely able to hold my eyes open, and I have to go take a nap, usually for about two hours. I am trying not to lose hope, but it seems my dreams to overcome SLE and Fibromyalgia and be productive again are slipping quickly beyond my grasp. I'm on hiatus from school this year, to get the loose skin on my lower body removed from the weight loss. It will be a staged process, with liposuction first to remove the fat deposits hanging onto the loose skin, then a thighplasty, to remove the excess skin. Each healing process is about 6 months, barring complications. It's a medical issue, as no matter how carefully I disinfect my skin and make efforts to keep the folds dry, I end up with cellulitis or cutaneous yeast infections. I am building an antibiotic resistance, as this last infection,about three weeks ago, I had to use two different types, in order to competely eradicate the infection. I should own stock in Johnson's Baby Powder and PhisoHex (it's still available to doctors for surgical scrub, and my doctor gets it for me). I found this great lotion that's made by Vaseline, Moisture Rescue, and it's better than the old Vaseline Intensive Care. In spite of all I do, I still get the infections! I was so scared it was something bigger, I went and got tested for AIDS! Of course, that was negative. So, that's what's going on with me, and it seems my dream to become a Bariatric Registered Dietician, will have to go wherever it is that dreams unrealized go, as it seems to no longer be a dream deferred. I'm trying my best to deal with this and not get depressed. I've always been one to set my goals very high, and I've not had a great deal of difficulty in attaining them, but perhaps I've met my match with SLE and Fibro. I hate to think of myself as a pitiful soul who accomplished great things in the past, but is now a "has been". An accomplishment for me these days is being able to get out of bed, and make it through the day without "lupus/firbo fog". I'm so afraid that this disease will rob me of my mental faculties, and I have even gotten lost when taking a very familiar route. I also dread being afflicted with the "family demon" - dementia. Unfortunately, that's how things stand with me. I'd give more than a million dollars to be rid of all this and go back to life as it was. Sorry I didn't have better news, but as the late, great Jack Gibson used to say on the radio - "That's the truth, Ruth". Hope the upcoming school year goes well for you, and that you are flare-free!
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