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Reged: 07/08/05
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Part of my story
      #159313 - 08/30/05 09:55 PM

My ex-husband, yeah he was my first real boyfriend, was a real smooth talker. I met him when I was nineteen. He claimed to be eighteen, I later found out he was only fifteen. My mother was a missionary so I had lived a very sheltered life. Eugene was from Chicago so I was an easy target. Back in the late 70ís Aids or HIV was not a big issue. I never talked to my mom about sex, so I never knew about protection. My sister had a baby at the age of fifteen so I was afraid that if I had sex, I would become pregnant too. I look back and wish that was all I had to be afraid of. I fell for the line Ďif you love me you will do ití hook line and sinker. First of all let me say that you young girls if a boy ever gives you that line tell him that if he respected you, he would wait.
Sex education in early 70ís was not a big subject in school. I guess adultsí back then felt if they didnít talk about it, it would never happen.

I finally slept with Eugene I would say in 1980. I finally found out his real age, but by then it was too late. I imagined myself in love. Even when I found out that he had another girl friend he just blew it off by saying Ďyouíre the one I want to be withí and I would fall for it. When Eugeneís mother found out about me she told me he use to steal her needles, she was a diabetic. I, of course, didnít believe her; I felt she was just saying that so I would quit seeing him. I look back now and realized I should have listened but even if I had listened the consequences that involved what needles were used for wouldnít have sunk in. I never knew what used needles could cause. Even to this day I donít know if it was drug use or if he was really a DL person. The one thing I look at now is if I would have known back then what I know now stealing needles is a tell tale sign that something wasnít right. I also should have been suspicious of all the money he could go through.

His family moved to back to Chicago and he went with them. By this time I was pregnant. I was too hurt and scared to tell my mom so I moved to a town close to Chicago. I didnít let my mother know I was pregnant or leaving. I went and stayed with this girl I had met when we would go to church in that town. I stayed at her house until I had the baby then her husband helped me find my own place. I would constantly go back and forth to Chicago to see him after the baby was born and a few times before she was born. He decided to move back to the town where we had first met. I went there a couple of times; with the baby to see him, and found out he had another girlfriend. I was furious! I knew he had a warrant on him from Chicago so I called the police and told them where they could find him. He was picked up and sentenced to three years. I went back to my new home and felt bad. He called me up and said he was sorry and wanted to be a real father for our child, so I caved in. I went to go see him a few times while he was in jail then about eighteen months later there was a knock on my door and there he was.

At this point I still feel I was not affected. I am wondering now if he was raped in prison and knew he was affected and to get back at me he gave HIV to me, or if he really didnít know. All I know that my daughter was born in 1983 and I had to be ok then. He got out in 1986. I still didnít know about how unprotected sex could hurt you so I had sex with him. All was fine for about two years, and then one day in 1987 he got sick. He went to the doctor and found out he was positive. I donít know why I didnít get tested. I guess I still didnít know how serous HIV was or I was just scared and in denial. We moved to Kentucky in 1988 and I felt sorry for him and married him. I know now that I married the man that would ruin the rest of my life. He got real sick in Kentucky and lost a lot of weight. I never once felt fear for myself. He decided that I didnít need to be in Kentucky with a baby so I moved back to my hometown in 1991.

When we got to my hometown we found out that his mother had moved back. He decided to tell her the truth on what was wrong with him. I really canít say what was going on in her mind but she told him not to tell anyone and that no doctor in town would care for him. In my opinion she did not show any sadness for him but just had fear for what people would say about her and shun her. She never once was concerned for my baby or me. He had to leave and move back to Chicago where he could live in an Aids Home.

When he moved to Chicago in 1989 he was at that point a shell of a man. He was not on any medications and quite frankly I donít know if theyhave the medicines they do now. He got so skinny and lesions started appearing on his skin. He would come to my hometown a few times and see the baby and me. One day his Aunt called me up and told me he was in the hospital. My baby and I took the train up there. He was in a comma and they had tubes shoved down his nose. His lips were three times the size of regular lips. The doctor told me he was jaundice and had pneumocystis carinii pneumonia, which I found out is common with HIV patients. His HIV had developed into Aids. His liver was shutting down and it was only a matter of time for him to live, he died in 1990.
I was diagnosed in 2000, ten years after he passed. I guess since I seemed to be fine when he passed away so I thought that I was in the clear. How silly of me. Now that I look back if it took ten years to show up in me how long could he have been affected?

I was at work and started to feel tired one day. I would go to sleep at my desk, go to the car at lunch and take a nap, and find just about anywhere to go to sleep. This fatigue also affected me at home. I would get off of work and go straight to bed. I was too tired to look after my daughter, by then she was a teenage girl and needed supervision. It still never occurred to me that anything was seriously wrong with me until I lost control in my right hand and my speech stared slurring. The girls at work told me that I had better go to the doctor. I went to a local doctor and she ran test and couldnít figure out what was wrong. I guess testing for HIV is the last resort of any physician in a small town.
I went to a sleeping specialist and he finally referred me to a MS Specialist. They ran a MRI on me and found that my white brain matter had some spots. He thought I had MS. Before he would prescribe medication to me he referred me to a specialist in a big city. I went to her and she said that it looked like I had been having mini-strokes due to low blood pressure.

A couple of months went by and my symptoms were getting worse, I had diarrhea, my hand was getting numb and my heart was acting funny. I thought that I had better go to the hospital. By now I was leery of the small hospital we had in town so I asked my mother to take me to the hospital in the city. They hooked an EKG to me and told me that I was having heart murmurs. They went ahead and admitted me.

They gave me another MRI and saw the white brain matter was getting worse. They ran all kind of test on me to see why I was getting sleepy all the time and I was losing feeling in my hand. They also asked if I would be willing to take an HIV test. I said sure knowing that I would be ok. After about a week my doctor came in and said,Ē I have bad news for you, your test show that you are positiveĒ. I was shocked, devastated and scared. I remembered what had happened to my ex-husband when he found out. I started crying just knowing my life was over. Quite frankly I was having thoughts of suicide.

Later that night a man came and talked to me and said that things were not as bad as they appeared. He gave me some medicine and told me a doctor who specializes in that field would be in to talk to me in the morning. I lay there in the night and thought of death. How could I live like this knowing when my time would come, then I thought about my daughter? She had already lost one parent to the virus I would have to fight so she wouldnít loose another one.
I was scared about what the future would hold. I was suicidal so they gave me some antidepressant. Even to this day, five years later, I often think about death. I had lost the one thing going for me, the full use of my right hand. I always knew if nothing else I could get a secretarial job. I eventually had to go to therapy when I got out to even move my hands.
I thought things couldnít get any worse when a doctor came in and told me I had PML. Of course I didnít know what that was so he explained to me that a JC virus was in my spinal cord and the fluid affected parts of my brain. I probably would never get the full use of my hands.
It has just been lately that I started researching PML. I found out that the death rate was two Ė four months after being diagnosed. It has been five years now but I am still very worried. My doctor assures me that the better my count gets the PML lessens.
Because of my illness, I had to take more days off then my work allowed so they had to let me go. I applied for disability and started receiving that. All I wanted to do was just live! I felt my life was over. I couldnít help my daughter like I wanted to and I just couldnít do anything.
I was used to working and enjoying life, now all I can do is exist.
I had to stay with my mom for a year in a small room along with my daughter. Eventually I got better and moved out with my daughter, she was a junior in high school by then. I wanted to go back to school so since I was considered a displaced homemaker they paid for me to return. I couldnít keep notes so they assigned me a note keeper. My doctor was afraid my memory would not allow me to retain the information but it did. I was able to walk to get my diploma but I lacked six credit hours to receive it. My health came into play but now I would love to go back and get it. My one wish is to return to school and get my degree but I see that hope slowly fading away.
I am now in a clinical research for infectious disease, which is what they call it. My health is great and I am starting to get restless. My one big fear is that if I go back to work full-time, how will my medicine get paid for? I mean the medicine I take is EXPENSIVE! I seriously doubt if I can get medical at a new job. My daughter joined the Army and got stationed in Hawaii.
I still have my doctors in the city but I am feeling great. I would love to move but my illness is like a chain around my ankles. I know that I will always need to take this medicine in order to live but if I canít live life fully what is the point? I want to work but I canít; I want to go to school but I canít; there are so many things I want to do in this life but I canít knowing I have to take my medicine every day.
I have started doing research to find out ways that I can perhaps help someone else before they go through this. I look at life now and realize that you have to make the most of it while you can because when it is over, it is over.

I guess I will have to live one day at a time because that is all one can do. My doctor assures me that as long as I take my medicine, I should be fine.
I think even the PML is going away. I met a doctor from Nigeria the other day and he said that his people do not even get the medicines to keep them alive. He was so kind and charismatic. I could feel that he knew the dark side of the disease and could relate. He told me he had been so the U.S for only two years. I told him everything. He made me glad that I was living here in the states and nowhere else. I really feel that no matter what, I will somehow survive. I still wonder how much time I have left but I will not let that worry me anymore. It has been five years and I am only getting my degree. The one up side that is working in my favor is that I never did drugs or drank. My ex-husband obviously did both. I practice with my hands to try and regain the strength in them.
Now 5 years later I am not sure how long I have but I realize that I want to make the rest of my time on this earth worth living. I am thinking about moving but I am scared that I will not be able to find the correct treatment. The one thing I know, I will survive if not for me, for my daughter!

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Re: Part of my story new
      #159377 - 08/31/05 11:30 PM

You are in my prayers. God Bless you.

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Reged: 03/21/05
Posts: 846
Re: Part of my story new
      #159535 - 09/05/05 04:27 AM

your story truly touched my heart. You have really come a long way. even if your reasons for wanting to go farther are for your daughter.....then that will keep you going.
You have an amazing story. You are in my thoughts and prayers. you do, whatever it is you need to do.....and you will pull thru. You are a stong woman, to deal and accept, (even before you knew you were infected). Seek help from major aids organizations (even at the nearest major city), even if they dont have the resources, they know who does, and how it is you need to obtain them. I wish you all the best.

love and prayers,

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Re: Part of my story new
      #160986 - 10/03/05 01:12 AM

They say what doesn't kill you makes you stronger and when you can no longer stand - you will learn to fly.

Stay strong and keep flying and thank you for sharing.

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