|I am not alone!!
Jul 13, 2005
Dear Dr. Bob, This is not really a question, but rather a thank you. I recently read a question "what's your secret", I was touched because I too have been Poz for 13 years and I too have good numbers and I too can't work, due to a long list a symptoms (fatigue, diarhea, stomach pain, nausea, neuropathy, etc. etc). I get so mad and frustrated when people don't realize that you can have good numbers and still be sick. Social Security recently denied me and doctors in the past have dismissed my symptoms, because there's "not much we can do about them". I strugle to keep a happy outlook, I have a lot to be thankful for and yet I still get very depressed (I take welbutrin. Is there any info on the subject "but you don't look sick"? I just want to strangle people who don't understand, I get tired of trying to explain it. Thank you. And thank you for being a beacon of hope and happiness. Sincerely, Jason
Response from Dr. Frascino
First things first. Social security should not be concerned with how you look, but rather with how well you can (or cannot) function. Your denial decision can be appealed. But before beginning that process, you need to hook up with an HIV specialist who is competent, compassionate, and experienced. Make a list of all your symptoms fatigue, diarrhea, stomach pain, nausea, neuropathy, depression, etc., etc., etc. and all the medications you've taken over the past 13 years. Make sure your new HIV specialist puts your list of symptoms and all your medications in your chart. Ask him to be sure to document severity, frequency and therapies tried for each symptom. Ask for a copy of his consultative note, and if it's not accurate or complete, ask him to correct it. Once your medical record more accurately reflects the reality and challenges of cohabitating with HIV, consider hiring a lawyer or contacting an AIDS legal services pro bono firm to appeal your Social Security decision.
Next, consider widening your circle of friends and your support network the folks who really understand you and your illness. Once that's done, I doubt you'll feel the need to strangle folks who say, "But you don't look sick." Instead you'll be able to take it as a compliment.
"Hope and happiness" are freely available to all who desire them.
Good luck! I'm here if you need me. And by the way, I think you look fabulous!
none of my questions have been answered in 5 years
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