|You help keep me "hanging in there". Thanks
Jun 29, 2002
"Oh Lord give me patience --RIGHT NOW!!!"
Sometimes I just can't help getting impatient despite truly spectacular progress like mine. I just don't bounce back like when I was a kid of 65, a healthy well conditioned runner and highly competitive sailboat racer...
Diagnosed a year and a half ago with VL <1.5 million, cd4>100, stage IV NHL, MAC, PCP, weight >100 lb... etc etc... Now with Viramune, Ziagen, Kaletra & Androgel my VL is <40, cd4 25 & improving, weight back to almost 140, but sometimes the damned fatigue and Neuropathy drive me nuts. Neurontin & Oxycontin help but the legs and feet make walking or other excercise extremely painful and interfere with sleeping.
My health care team at Washington Univ. in St. Louis is tops --Pablo Tebas MD, another columnist on The Body, is my ID specialist, my clinical trial oncoligist & neurologist are super. I'm really lucky to have one of the best HIV/AIDS research centers in the world so close. I also have a cancer support group at the Wellness Commuhnity and nutrition consuling and food supplied by Food Outreach. BUT... Sometimes it's just so hard to remind myself that it takes time to heal. When I hit a plateau like the past month or so your forum and the others are so valuable in helping me tolerate the fatigue and pain, and just keep on taking those handsful of pills. Retired now, with a degree in Chiropractic and certification in substance abuse counselling, I know that my training and experience will be valuable as soon as I can get up more energy to get really active in volunteer service. You, as a PWA (Physician With AIDS) can perhaps find within yourself answers that go beyond empathy, touching the people so desperately seeking answers with your voice of "I understand, I've been there too." Thank you again, Dr Bob, and please keep up the good work.
Response from Dr. Frascino
Thanks for writing and for your very kind comments. I'll post your comments so that others with multiple problems (AIDS, MAC, PCP, lymphoma, high viral loads, low CD4 count, etc.) can read your words and realize that they too can bounce back, albeit maybe not as quickly as we would like. By sending your story out to cyberspace, you are already helping others!
Thank you Jim. I wish you smooth sailing, calm seas, and improved energy levels!
Let's go sailing together someday, OK?
can you please help me?
Hiv negative and unhappy?!
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