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Well,I killed my old site to it is time for a new one.
What's it like living with AIDS?Well my life is probably no different than yours..My story starts back in 1991 when I was in the Marines.. I was newlywed. I was pregnant . My husband was about to be sent to do cleanup in IRAQ.. He was given a standard test for AIDS.. He told me he had to check into the hospital for some tests before they let him go to Iraq. I figured out what was going on when I found myself on the top floor of the most isolated building at Balboa Naval Hospital..There were signs about AIDS all over the walls..It didn't take much brains to figure it out..
I went back to my job the next morning and told someone what was going on.. I was immediately sent to BAS for an HIV test.. Years later the corpsman who took my test emailed me..He said how amazingly calm I was.. It was a sunday and they called people in..It was REALLY BIG DEAL.
Back then their was a months wait for and HIV tests results..I *knew* I had it. I just knew it.. About 5 weeks later I was called in to the CC office.. The company commander was there, a gunny a chaplain and a corpsman. I guess they expected me to freak out.. A Marine doesn't do that though. A Marine always keeps their bearing.
I was sent straight to Balboa NavaL for 2 weeks of testing and education. My first blood tests were bad. My tcells were just over 200. Back then anything under 300 was considered AIDS. I had AIDS..Not HIV. Full blown AIDS. I did make some good friends during those 2 weeks..Most of them have passed on by now,but for some reason I'm still here.
I was told that 2 tcell counts below 300 would give me a medical discharge...I had 2 and the discharge process was started.
I was advised to have an abortion,but that was not an option for me(I am pro-choice however) My daughter is now 15.
The military handed me well in some ways and poorly in others..I remember walking past a group of Marines one day and one of them said, "look at her walking with her AIDS infected a**".I turned right to him and said yes,I do have AIDS and I don't appreciate your comments.
Word spreads quickly in the military.. People in Iraq knew about me...I got called into someones office a few days later and was told I had better shut my damned mouth or no one would come into the messhall where I worked anymore..Of course I wasn't the one who told everyone and anyone who didn't know certainly leanrned I had it from him yelling at me.
SO I was very soon a medically retired Marine...I set about my business living with AIDS, because that was what I planned to do. Live not die
My marriage was horrible..He couldn't handle having AIDS..I guess he figured if he was going to die of AIDS he was going to enjoy life doing it.. He drank, did drugs,cheated and was borderline abusive... Anyone who read my old site knows a lot more details..It's time to let it go and move past it..
I had my kids ..They were HIV negative as are the majority of babies born to HIV infected mothers. I was in a horrible miserable marriage and I didn't know how to get out..My ex used to tell me that no one else would ever want me because I had AIDS,and I believed him..I stayed way too long. I was too chicken to leave..I'm supposed to be so strong,but I was chicken.
Finally 1n 1994 it ended.. I was living alone and struggling..A man came to my door to get the key to the apartment downstair..I know most of you probably don't believe in love at first sight,but it's true .It happens .It happened with us..I still knew I had to tell him that I had AIDS. I though that would send him running for the door.. His response was"I don't care, It doesn't matter. If we have 1 year, 10 years or 50, I'm in.
We had our beautiful son one year later...My health was still good and I was blissfully happy. My kids were happy and I was feeling very lucky ,despite having AIDS...Most of the time it was very easy to forget that I was sick..People would never have guessed.. I choose to keep it quiet though. I have had a few ugly incidents.. Somehow the word got out at an apartment complex I lived in.This was when my daughter was small. I knew the word was out when people started pulling their kids away from her,or when I saw that look of pity on their face..I never wanted anyones pity. Don't pity me.
Another time Ed choose to tell someone that we felt was a good friend..He told his wife,and his wife, an RN flipped out.. We were supposed to go on a vacation with his job and she called me yelling and threatening me..She told me I had better never go near either one of her kids.
In another incident we were standing in a yard talking to some neighbors when they started talking about the gay couple down the street..I guess one had doed from AIDS years before and this man was proud of how he had *Chased the other guy with AIDS* out of the neighborhood.. I knew then that the choice to keep quiet was the right one..
In 1997 I started to get symptoms..I was tired.I would cough until I couldn't breathe. I couldn't walk through the mall for more than a few minutes without getting tired..I had heard about the new meds called Protease Inhibitors, but honestly,I was so tired of hearing about medical miracles for people with AIDS, that turned out to be false ,so I was wary..I knew I had to do something..I knew this was it. I was really getting sick . Hey they said I'd be dead in 18 months and it had been 6 years.. I went in and got blood work. My t-cells were at 35...That's 35..Normal t-cells counts are around 1000. I was extremely high risk for opportunistic infection. They also gave me a new test, a PCR(Viral Load) which is essentially a DNA test. It would tell me how much HIV was in my bloodstream..My viral load was 176,000..That's not good. I agreed to take the meds. I was lucky, aside of making me sleepy they had no bad side effects for me.. Some people get fatty deposits, sunkin faces, buffalo humps..I did gain 30 pounds in 6 months...I constantly fight with that protease inhibitor weight.
The change in my health was miraculous. Within a couple of weeks I felt 100% better.
1 month ater starting meds my t-cells were close to 200 and my viral load was undetectable...There was no tracable HIV in my bloodstream.
Let me explain some basics. Pretend you are a car..The tcells tell you how far you are from the end of the road and the viral load tells you how fast you are going. You want high tcells and a low to undetectable viral load.
..Now undetectable does not mean the virus is gone..It means it's not in the blood stream.It still hides there in the vital organs, heart brain etc. waiting for you to forget to take your meds. It was a lot of meds too . At one point I took 42 a day
The meds worked and worked well.I was doing just fine until 2000. At some point in october I started to feel out of sorts..When I spent a night(oct 28th) sitting up because I couldn't sleep lying down I knew it was time to go to the hospital.. I didn't feel terrible,I just didn't breathe well. As soon as I got to the hospital they did a chest ex-ray... They immediately saw that my heart was enlarged.. I was experiencing congestive heart failure.. I was terrified because I had no idea what that meant.I thought it might me open heart surgery.I had no clue.I was also tachycardic with high blood pressure.. They put a patch of nitro-glycerine on my chest. Then they put another one..I went from feeling fine to falling back on the gourney. I couldn't even open my mouth to tell them what had happened.I was seeing 3 of everyone and feeling sick to my stomach.. Someone ripped the patches off of my chest..Either they gave me too much or I had a bad reaction. Ed called at this point and all I could do was moan into the phone. They gave me a shot for the nausea and i ,mercifully, went to sleep. I woke up the next morning feeling fine. They had given me lasix to get rid of the fluid and digoxin to slow my pulse.. An echocardiogram showed that I had cardiomyopathy, a very serious heart condition..It is the main cause of heart transplants..I ,of course, would never get a heart transplant. One of the risks with cardiomyopathy is sudden death..I could just drop dead.
I responded well to the meds..I was sent home on halloween.I wanted to spend halloween with my kids . I actually went trick or treating that night.
I had another good and uneventful 2 years. My cardiomyopathy was under control as was the HIV. All was well until Nov of 2002.. I was sitting on my couch and suddenly could not move my right side.. I couldn't wiggle my toes. Nothing..I felt like I was in a dream state.I was not in pain just sort of in a haze. After a few minutes the feeling came back..I knew I needed to go to the hospital.. I got dressed and even put on makeup. The loss of movement came back. I had to be carried to the car..By the time I got to the hospital I was fine..Of course as soon as AIDS was mentioned at the ER I got a go to the front of the line pass.I always do..One of the benefits too haing AIDS. They admitted me the diagnosis was TIA, Transient Ischemic Attacks . They were unsure of the cause..Was the HIV attacking the brain..Were the meds causing it? Was it a clot caused by the enlarged heart? They never knew..I was sent home after a couple of days
The day after I came home it happened again...This time there were many more tests..They did a spinal tap to check to see how much HIV was in my bloodstream..They checked for toxoplasmis..They did an MRI.. Best and most fun of all was a cerebral angiogram.. They cut an artery in my groin, stuck a tube in it, fed a camera through it, sent it to my brain and released dye...It was pretty cool looking at my brain on the monitor..The room looked like the TV room from Willy wonka and the CHocolate Factory,only with no candy. Bummer. They were looking for vasculitus..They didn't find it.. After it was over the very hot doctor had to apply pressure to my...... area for 20 minutes to stop the bleeding and occasionally give a little feel to look for hematomas...No really he did.. What do you talk about when a hot doc has his hand on your.... area?
Anyhow,they never found anything..My MRI did show some necrotic tissue.. Something in my brain died..Lucky it was a part I wasn't using.. The odds were good ,I don't use much of it.
I went home feeling much worse than when I went in.. I felt like I got run over by a bus for a couple of weeks..
They had to change my meds.They had to put me on some pretty nasty meds because I needed to be on something that would break the brain barrier.. I was sick to my stomach every singe day for 3 years.. Those of you who think there is never a need for medical marijuana have probably never seen anyone dealing with AIDS.. I never smoked pot,but if it had been legal I would have tried..I tried various anti-nausea meds... They didn't work or they turned me into a zombie. The only only one that worked was Zofran ,which is given to chemo patients. Of course my insurance would only pay for 15 pills a month .
That was really the last time I was sick.. It's been 4 years of pretty good health..I did develop resistance to a couple of drugs and had to switch to some new ones last year. Luckily they don't make me as sick as the old ones did.
I'm heading for the 17 year mark..Who would ever have thought that I would live this long? And not just live,but thrive.. 2 illnesses and hospitalizations in 16 years..That's just amazing really. I have never allowed AIDS to rob me of my dreams or of my identity. I have never been just "That women with AIDS" In that way, i have already beaten it
This year with Ed getting so sick and almost dying I have realy learned how hard it is to be on the other side of things..Honestly,I think I would rather be the sick one..It's easier that way. Watching someone you love get sick is just awful.
I should tell you I'm not a believer in G-ds plan..I don't believe he gave me AIDS or decided that Ed should have an Aortic Dissection and almost die..I think If I believed in a G-d like that i would have a very hard time worshiping him. We get sick because we are human and we are frail and things happen.. I don't believe that G-d is up there picking and choosing people for suffering..I believe he is up there crying with us when it happens.
I also believe that in some ways having AIDS has been a blessing...It certainly has taught me a lot..It's taught me that I'm strong.. It's taught me that I need to live every single minute like it might be the last. Some people never learn this..
Jan 2th 2007 Ed suffered an Aortic Dissection which has a 90% fatality rate..He is alive but it was very very bad..
Links below
Part One
http://hometown.aol.com/jennymominri/page1.html
Part 2
http://hometown.aol.com/jennymominri/page2.html
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