My Story

[rayrob28]

Before I start typing out this bit of an introduction, I just wanted to thank everyone in this forum for their time, knowledge, and patience. I've been a reader for a while....

So, here's my story:

Almost two years ago, I began having severe back pain and migraine headaches. I was going through endless Doctor appointments, MRIs, Xrays, Spinal Injections and full cabinet of medications. Finally, almost a year ago, the pain had progressed into my shoulder, and I was sent in May 2010 to a Neuro-surgeon (who ordered another MRI). When my follow-up appointment came, my cousin went with me, as I was not expecting the best of news, and I expected I would need a shoulder to "cry" on. I remember waiting and waiting, cracking jokes with my cuz. When the Dr. came in, he introduced himself (I hadn't ever met him before) and proceeded to inform me that surgery for my back, neck, and shoulder wasn't an option at this time. Then he sat down in front of me eye-to-eye. He told me that they found something else in this MRI that truly concerned him and the other doctors I had been seeing. It must be hard for a doctor to face a patient and relay information that's going to affect the rest of someone's life, but with a caring look into my eyes he told me that I have lymphodema. I didn't know that it was the enlargement/swelling of the lymph node, but I asked what was causing it. He explained that there was likely one of three things causing it; hepatitis, a type of cancer, or HIV infection. I knew what hepatitis and it's symptoms were and in my mind ruled it out almost completely. He said I would need referals for oncology and some other blood tests from my family doctor, and suggested I do so immediately. My cousin and I went to the car. I told her that between the two remaining options, I would rather be HIV positive as compared to cancer and any type.


A person who I had been with sexually two years prior had called six or so months earlier to inform me that he was HIV positive. Besides my life partner of six years, this other person was the only other person I had been with. So, the day after my neuro-surgeon appointment, I made arrangements for a rapid HIV test and hepatitis test. I told them of my doctor's appointment, and I had to rule out some things for my own peace of mind. Unfortuneately, I didn't rule out anything except hepatitis. I was HIV positive, and my life turned completely up-side-down in a matter of 20 minutes. Because I went through the clinic, I was immediately hooked up with our local resources for HIV/AIDS support and taken in for preliminary evaluation and education. I got in with an Infectious Diseases specialist, and in July 2010 my blood was tested to find out my "numbers." My CD4 was 312 and my viral load was 382880 and I was having some opportunistic infections. I was clinically diagnosed with AIDS after only being HIV positive for about 2 years. I had already been educated about what all this meant and how this would affect me. In August 2010 I was put on Isentress and Truvada. Within the months since starting the meds, it was like everything I had been through (illness/sickness) for the past year came back in exactly the reverse. I do feel better in general and I have no real side effects from the meds I am taking so far. In a few more days, I will find out my current "numbers", and I am quite sure that they will be greatly improved. I have dealt with all this quite well. I will continue to keep handling it. I write to let out my anxieties, take my meds daily, and have developed a very strong support system of people that genuinely care about me. I really can't say that this has all been easy, but I do believe that I can work with it much better than I could have worked with cancer.

Thank you for this outlet and all of the opinions and knowledge that already exist here and the accompanying websites.