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After living with HIV and facing that adventure I was diagnosed with stage 4 non-responsive hodgkin's lymphoma, no chemo treatments worked and I have had to have a stem cell transplant which I am currently trying to live through. It is a very discouraging thing to purposefully completely destroy your own immune system after struggling for so long to try and prop it up, but that's what they do, they annihilate your bone marrow to destroy the cancer. So I lay here with no counts at all of any kind across the board, and a virus in my cells waiting to pull an all night free for all on what's left of me, and wonder how I will survive. I used to say "it can't get worse than this", now I know never to say that again! I watch the city from my window and I wait...I can't stop what's coming but I can remember what fun I had in this life, and how much I loved life. Props to all.
I Was Diagnosed Hiv+ In 2000 And Spent 1 Year On Meds, After Responding Well I Took A Drug Holiday For 6 Years. Due To Uk Guidelines I was not Recommended To Resume Treatment Until My Cd4 Count Dropped To 250, I respected This guideline and was Happy To Be Drug Free. In Retrospect The Last 2 Years With A cd4 Under 400 Were Hell. I Basically Went From one Minor Illness To Another With No Quality Of Life. Since Resuming Meds In October 2007 I Have Not Had A Days Sickness ( Other Than The Usual Meds Reactions)ANd A Normal Life Seems Possible Again, The New Regimen In Comparison To What Was On Offer In 2000 Is A Breeze. My Conclusion Is That Firm Guidelines On When To Start Treatment Should Be Softened To View Each Case On An Individual Basis. Constant Minor Infections Caused By A Low Cd4 Made My Life Intolerable And Me Intolerable To Those Around Me..Stay Well, Simon.
Davids bloging about 28 years makes me feel like chicken again. Both my partner and I like good little responsible new york city girls trotted our selvers out a few days after we met on July 11, 1988....yes only a measly 20 some odd years ago. the following week we anonomousely tested positive and looked at each other and agreed it could have been worse, one of us could have been neg ...thats true love. The following 2 decades would find us rollercoastering to our demise during the insanities of the eighties , followed and usually hand in hand with continousely burning the midnight hours in our sucessful carreers and bisiness ventures. At first we would prepare for our demise as we had burried so many friends in those dark early years, like any good litle boys we would spend our last days sunning in south beach and traveling the world..well it wasnt long before we were informed that this was not the case and that we'd have to live a bit longer than we had planned for...making get off our hinies and start up businesses to sustain the vacation of death life style we were accustomed to. after many years as pillars of the community ,running our businesses, and giving generousely our time and money, and never missing a cicuit party, where ever we coukld find one...including the first gay pride in puerto rico, being at every port that shristopher cilumbus hit in 1522 , we jetted to each destination in 92 just to see the faces of all those sailors who's facial expressioned of confusion would hit them as we waved to them from new york, to puerto rico, and spain. the over the top exobetaant lfe style would run us so ragged at one pont we would be at our deaths door, when maraculousely a breath of life would bring us back with no promise of surving the current tragedies. because of the nature of the how any good news could turn quickly into a sour note as our fragile bodies would turn on us we would again after a very good ten year run wind up agagin where we started with out medical options and peeket out looks. our next adventure would make us more sensible, starting a new in the country , away from the electric cities of new york and south beach, and make us conservative frugal country gals recovering from their whirlwind past. Now as we live about the most boring place we have ever lived , with a cultural cacume that would make kansas look like a capital cultural center, we have started yyet again up the very steep climb to new carreers that will allow us to once again run with the bulls and work toward moving back to civilization after a 6 year sebatical here in Floridas Nature Coast, a new plan in hand a new dreams...again....a road we have traveled over and over again, just to hear the same thing from our clients , friends and neighbors....no way you can't have that decease, you both look so well, its amazin that your type can live through to tell your stories of adventure all the while awaiting your demise. it gets real tired, maybe I'm an ingrate...but I really wish I never hear those words uttered by another 28 year old indian doctor who gives me the third degree about my first time. JOHN J Peransi
I had a baby girl 7 months ago. A beautiful, healthy, HIV-NEGATIVE baby girl. She amazes me every day. I had my tubes tied at the tender age of 22 - 9 months after my diagnosis. At that time (1999), the chances of passing the virus to a fetus was 8% - too high for me. After I met my 2nd husband (who's negative), we looked into our options. I had my tubes un-tied (re-assembled?) and got pregnant (via in-home self insemination) 9 months later. Today, with the proper treatment and medications, there's less than 1% of passing HIV to a fetus. My daughter was over 8 pounds when she was born. There's not a thing wrong with her - thank God (and modern medicine)! Share our joy at www.mayanoa.com -Erika
It seems like a long time ago that I was diagnosed in the mid eighties and yet like it was just yesterday. I still feel the fear that permeated that time. I still occasionally feel the anger that came along with the fact that no one was listening to our cries for help. Now, some twenty years later, I hear indifference and my anger is now tinged with sadness. Last year at the AIDS, Medicine and Miracles retreat we were asked to stand if we had lost others to AIDS. Numbers were called out; 10, 15, 20, 25,30,as people were sitting down counting off their losses. When the number 45 was called I was the lone person standing. I was asked the number and I responded, "46". In the 80's when people around me were disappearing I was angry. Instead, that day last year, I had a deep sense of saddness. Despite the fact that people still die with AIDS I have hope. I am now filled with joy that I am here today and I plan on being here tomorrow. It now also occurs to me that having this hope got me through the really tough times back then, will get me through these times now.
I don't think anyone who is also "on this journey" called HIV has the right to criticize your blog or how you deal with the everyday stresses that come with being a long term survivor. I have been positive for 11 years and have known many men and women infected since the 80's that watched their friends die before new drugs came on the horizon. One lady described going to her group meetings as being akin to the "funeral of the month" club due to so many participants dying between sessions. I feel I am one of the lucky ones since I diagnosed in 1997, right about the time protease inhibitors and other new drugs were hitting the scene. It was around the time I found out I was positive that I met a woman who told me she had been positive for 18 years. Since I was still in the early shock stage of my own diagnoses, meeting her put a face on HIV/AIDS that was NOT a death mask. I was sooo busy at the time running up my credit cards and giving my worldly goods away in anticipation of dying soon that seeing her beautiful face, stopped my ridiculous behavior dead in it's tracks (for want of a better phrase!!). Her name is Joy, which says it all. I have since moved away from the area where I first seroconverted and first met her, but a day does not go by that I don't think of her and remember her in my prayers. Meeting her gave me hope, in what I thought was a hopeless world. I have since moved back to my hometown, (a small resort town in the California mountains) and unfortunately I have gone back in the closet to protect my new husband and 14 year old son from the stigma that HIV brings. I miss my vocal days up north where I participated in such programs as "Positively Speaking" at local colleges and a prevention program on the mean streets of Portland called "Sisters Connect". Being a part of such programs gave my positive status a positive purpose in my eyes and helped me cope. I am still doing ok,,since finding a good doctor down here that really listens to me. The few people I have disclosed to still have alot to learn. I hate it when folks find it easier to talk about me then to me. Pisses me off,,,but society still has a long way to go.
I like what I read. I had HIV for 20 years and as the person stated it no walk in the park. I just have one rule never,never,never quit
julianna
apology to ''mike'' for coming across as self pitying and bragging - i certainly didnt intend it. many people i knew of opted for suicide they were so afraid of the end and very isolated anyway. i did housecalls for people like this and wrote to them for company . i feel for their experience and that is all.
March 8, 2008