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HIV Life >> Living With HIV


Reged: 02/22/10
Posts: 46
Loc: Texas
I need some help - Here is my story.
      05/13/10 06:25 PM

I guess it is time for me to vent. This is something I don’t like doing at all but I am feeling very confused, lonely, abandoned and overwhelmed with emotion. I am asking for any advice from anyone who can take the time to read this. It is long but in order to get some help I must let you know things about me. This is my story.

In Jan 1988 I found my soul mate! I seen him filling out an application where I was working. I mean my heart stopped, I couldn’t breath and all of a sudden I forgot how to walk….LOL This was on a Friday (Jan 8, 1988), I called the HR dept to find out his name, when he was starting, and what department. My friend told me Monday. I went home that day and it took me all weekend to figure out what I was going to wear the upcoming week…LOL…Well when Monday came I was in the cafeteria with my friends (they all knew) and in he walks…..I must have turned bright red when we met I contact because my friends laughed at me and told me to breath. He smiled and winked. At that point I got up and almost fell out of the cafeteria I was walk/running to get out. I was very shy and even though I had been prepared I really wasn’t. My one friend told me later he came up to find out my name and she voluntarily told him how shy I was but very interested….LOL… So he flirted with me everyday for 2-weeks then asked me out on Jan 22, 1988. OMG we knew each other instantly when we actually got together and started talking and held hands. He was my everything. On March 7, 1988 he found out that a man who had raped him at the age of 12 had just died of AIDS (long story). He was happy at first but then said oh no….Well you guessed it we got tested right away and our results were given to us on March 28, 1988 together and we both came out Positive. He felt horrible because he gave it to me. I felt horrible because it happened to him. I didn’t care I was positive I loved him more than anything. It was always him and I against the world (that’s what he always said). He was a casual drug user when I meant him which so was I so to me it was cool (I only smoked weed and that is what I thought he was doing as well). But his drug use started to get worse which I mean we did a lot of drugs but then he started snorting heroin. So I decided to try it as well what the heck I was with the love of my life and I just knew he would take care of me and always be there for me. Well my system would not except it so I tried a couple of times and he was always there picking me up off the floor and cleaning me up. But I stopped and just did the little stuff (weed, acid, coke, and whatever else was at the parties we went to). We got married on Oct 14, 1989 and had a great time. We didn’t have much money but just being together was great. We were so much in love with each other. Have the time we never were aware of others around us. Then about a year or so later he was getting more heavly into the heroin (still snorted it because he hated needles)…LOL…Imagine a junky who couldn’t use needles. But he found another junky who didn’t have a problem shooting up for him. He was never violent and was always there for me whether he was high or not. Every therapist and rehab facility told me to leave him. I couldn’t do that I knew in my heart he needed love in his life and deep down even though I didn’t want to admit it he was dieing each day. I didn’t want him to die alone. Well he died…On…..his birthday……August 20, 1994 at 7:32 am……..My life changed that day forever..…I was alone in the hospital the day he died. The nurse came up while I stood feeling absolutely nothing as I watched him leaving me before my eyes. I was holding his hand and telling him how much I loved him. The nurse put her hand on my shoulder and said I must ask if you want me to call Code Blue.. I stood there for a second and looked at her and said no I love him to much to let him stuffer anymore. At this point I fell to my knees and only remember crying and hitting my fist into the floor. After that I don’t remember much except for people picking me up of the floor and asking me who I wanted them to call. I heard someone say I can’t believe she is here all alone, I looked up and told them my father-in-law is on his way. I had been in the hospital for a week with my husband and never once left his side. My father in-law was going to make me leave this day to go home change clothes and shower….My husband died of AIDS complications (Cryptococcal Menigitis) he was having seizures all week, went blind and deaf in his left ear and he had no T-cells left and a junky(what chances did you have). That week in the hospital we talked a lot. He knew he was dieing I think I did but just didn’t want to face the truth. He was trying to prepare me the best way he could. Just a second before his last seizure hit he said “You have always been my shining angel and stood by me when all had given up on me. You showed me how real love felt and I will be taking this with me when I leave. I will be looking over you and you will live a long and healthy life”. I was able to tell him how much I love him as well. He nodded with a smile and then went into the last seizure he would not come out of. So when the nurse ask me do you want a Code Blue and I said “No”. I said it because I no longer wanted him to be suffering no matter how much it hurt me….I just couldn’t do that to him. For 3 years after that I was on a suicide mission or should I say I would do just about anything and didn’t care if I lived or died. At first, I wouldn’t leave my apartment for 2 weeks then went back to work. My friends kept trying to get me to go out…So about 1 ½ weeks later I said what the heck live it up and lets go out with a bang. So I drank and drank and drank every moment I had a chance to. I was never the designative driver…LOL. When I didn’t drink I was at work , I started going to gym where I got to me more people that liked to drink a lot and then added some adrenaline stuff. These group of guys and a few of us girls would do different stuff. My favorite was sky diving, LOL…out of 15 people only 3 of us jumped that day. Then I got myself in excellent shape so I could start Rock climbing, dirt-b racing, bunging jumping, and white water rafting. I would go to the extreme and a few times an instructor had to pull me to the side and say are you on a death mission. All I did was smile and said no just really excited. Now if I was on a death mission why in the heck would I tell an instruction….LOL…

I started to date in Feb of 1997 and liked the guys but didn’t let any relationship pass the 3 week mark…Because that meant they would want to take it to the next level. And I was not ready to tell them my status. Enough people knew (my so called friends), they had issues I just couldn’t let these guys know. I couldn’t take the rejection from them also, so I ended the relationships. I would never let them meet me or drop me off at my apartment so when I ended it all I had to do was change my number (never gave them my last name) and I quit the gym. I stopped going out again and just drank at home when I didn’t work. I started to play on-line game fond it fun so I called Brother and Sister to get them to join. They all lived in different states. We had so much fun and made so many on-line friends. It was fun being flirted with and not worry about the physical contact or disclosure. Well until I met a guy and the relationship was getting crazy in a good way. We would spend hours on-line playing this game and, talking, and flirting. He lived about 2,000 miles away and I thought that was great, until he wanted to meet. I said let’s just send pictures of ourselves. We did and he said I have to meet you please. He said you must feel it like I do, these last couple of must I have totally fell in love with you……And he was right I did fall in love with him. Well it was time for me to end this and move onto some other activity to keep me occupied. So I told him my status over the internet in a private chat room and when I hit the send button I just sat there and cried. He didn’t respond for several minutes which felt like hours and then he said give me your number we need to talk. This would be our first time we would hear each other’s voices. We talked for hours the first night and he did a lot of comforting. We both agreed we would do research and he told me not to worry that he wasn’t going anywhere. He said everything will work out just trust in him. This was in August 1997 and at the end of Sept 1997 I flew down to Texas to meet him face to face. I spent the weekend with him and we already knew that in 2-weeks I would be moving down there permanently. We used protection and didn’t do anything that could possibley infect him. We knew it was harder for a women to pass onto a man if precaution were taken. I was not on any kind of medication yet because my levels had not changed from 1988 up to 1997. I went under his insurance right away so there was no lapse in medical coverage (common law marriage in Texas and don’t actually have to be married) . I decided in 1999 to seek out a Doctor who specialized in HIV. We both went to the doctor and liked him right way. I am still seeing this doctor today. Well he was a little annoyed that I waited almost 2 years to come to him but I didn’t see that there was a need since they didn’t put people on meds until they hit below 300 t-cells. But the doctor told me things had changed and they no longer waited for t-cells to drop. Instead they watched both the t-cell (CD4 count), and viral load activity. Well my viral load had become active at only 10,000 copes and my CD4 count was at 600 and I had to make the decision on taking the medicine. Well the decision was not really mine because my husband (oh we married in 2000 but lived together since Oct 1997) and family got involved and ask me to do this for them if not for myself. I will tell you now I am not doing this for myself but for all of them. My first regiment from 1999 until 2004 was Sustive, Zerit, and Epivir which I had to take twice a day (not a big deal). The side effects were killer for the first year until I started to become accustom to the drugs. The neuropathy was the worst, my legs hurt so much at times I didn’t think I could take the pain anymore and I was always exhausted. I could deal with everything else (nausea, headaches, and diarrhea), and I for everyone else. I was complaining about the lump that was forming at the back of my neck. See I started going back to the gym again and working out in 2000 and doing great. Was always into body building just not the extreme being a female and all. Anyway my doctor and family said don’t worry you will be okay and remember you are doing great and are alive. LOL…Alive….Well the mutation (that is what I call it) got much worst and now today 2010 I have lipodystrophy, buffalo hump, double chin and facial wasting ( upper trunk of body is deformed). Thank god I worked out as much as I did cause my legs and arms would just be bones. Don’t get me wrong my arms and legs are extremely thin and I have no butt. I wear a size 3 jeans (but wear 6 to try and hide the thin legs) and an extra large shirt with a scarf to hide the chin and buffalo hump. But hey I am alive, right? My medicine was switch out in 2004 to Truvada, Reyataz, and Norvir. I was told this would take several years but don’t worry (again with the don’t worry) these drugs don’t cause the fat distribution problem.. I guess my body has decided to prove them wrong because hit has gotten worst. I look like a football player without the equipment. But hey my CD4 count is between 900 and 1200 with no viral load detection (<50 copies). Oh yippee…This is where I am at today. A man that loves me but doesn’t touch me a family that doesn’t want to talk about what the medicine is doing to me physically and a doctor who says you really need to get with a support group and therapist that specializes in HIV… My doctor says you have legitimate concerns and need professional help and a support group. He say, by nature, I am not a person who suffers depression (I think my Doctor is in denial…LOL). Well there is no support group where I am located and I can’t find a therapist or counselor that specializes in HIV…….So this is my story and here is my problem.

I don’t want to take my medicine anymore! I have been abandon by my soul mate and have not felt him for years now. All I want to do is hide and cry because of how I see myself in the mirror (I basically cry myself to sleep every night (silent crier). I stopped going to the gym when things started to show physically. I wanted to ask a trainer for help but I didn’t want to tell them I have HIV but they would see my body and questions would be ask. I have no friends because I will not let anyone get close enough to me and I have been withdrawing from everyone the last couple of years. I stopped playing my on-line game, I only play PS3 now… alone. And socializing out side of work will never happen. When I am at work I am totally outgoing and make people laugh and when they feel down they come in my office and I just sit and listen and comfort them the best I can. They usually leave my office feeling better and smile more. I don’t want others to be unhappy because I know how I feel and I don’t want others to feel this unhappy. My doctor calls me a warrior – very strong minded individual, courageous, and looks at things in a positive way ( I ask my doctor if he had the right medical chart in from of him)…he laughed and said see you are okay. If only people knew how I really felt deep down inside. I just have a real hard time expressing myself in person to anyone. If I could (not in my beliefs) I would end it today. But I have responsibilities which means I am still here just trying to get past through the gray thought (can’t see the light and not totally dark). I feel I am at a cross road and I am completely lost on what to do. I want to desperately meet people who understand me and I can understand them. But even if I did meet these people in the flesh I would not go out in public because I hate my appearance. Geez I really don’t know what else to say except these words:
I am lonely, unhappy and just tired…

Please react anyway that you would like to….Maybe this is something I needed to do for myself. If you where able to get this far thank you for taking the time out of your day to read about me.

You all take care of yourselves and each other.

Post Extras: Remind Me!     Notify Moderator

Entire thread
Subject Posted by Posted on
* I need some help - Here is my story. Atheena 05/13/10 06:25 PM
. * Re: I need some help - Here is my story. Isabella   08/05/10 03:03 PM
. * Re: I need some help - Here is my story. bartlebyAdministrator   05/13/10 08:12 PM
. * Re: I need some help - Here is my story. Atheena   05/14/10 08:24 PM
. * Re: I need some help - Here is my story. torre   06/07/10 11:34 PM

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