Our stories

[whirl400]

 :)I am new to this forum and am still learning how to use this sight.  I have been looking for others stories of themselves, how they found out, and how they are living with HIV/AIDS today.  Here is my story:

I am a 38 Year old woman, straight, and divorced.  I was in a relationship with a man for four years and had grown to trust him very much.  I was shocked the day I found out that he had given me an STD.  I remember telling him and hearing how upset he was and then calming him down by saying, "dont worry, it could have been so much worse."  That was about two months before my diagnosis. 

It took me almost a month to get rid of the STD that he gave me.  It was unusual because I had to take antibiotics for three times as long as usual.  Still, my doctor never advised me to take an HIV test and of course it never occured to me either.  I was not in a high risk category, at least that is what i mistakenly told myself.  Soon after I was off the antibiotics I came down with what I thought was a cold. 

The cold I had progressed into bronchitis (at least thats what I thought) and I just held out thinking that I would get better soon.  Then one day I was shopping with my 18 year old daughter and in the check-out line I passed out.  It was the weriodest thing, I was just standing there, out of breath, and then blackness.  I came to on a chair with someone offering me a sip of water.  My daughter was in a panic.  We went to the ER and I was diagnosed with bronchitis.  I got a huge shot and a prescription for meds to take and started feeling a little better.  But within two weeks my symptoms were back and worse.  Back to the doctor I went and another shot and more antibiotics and still I didnt get better.  Back to the ER I went and again another shot and antibiotics.  When that didnt work I called the doc who had diagnosed my STD and made another appointment. 

When I went to see him this time I brought all of the empty bottles of medicine I had been on and told him that I was scared because I just wasnt getting any better.  That's when he told me that it may be time that we started to consider AIDS.  I remember thinking that sure, we should consider every posibility and still I was thinking that there was just no way!  He admitted me into the hospital on Feb 1, 2008.

In the hospital I was greated and treated with the utmost respect from the nursing staff.  I was a real trooper and seemed to handle the illness with as much courage as I could muster.  Seven days after I was admitted my test results came back positive.  I was in total shock.

My family had rallied to my side early on durring my hospital stay.  My father was my rock and was there for me every minute of every day.  He was there the morning that my health took a turn for the worst and i was quickly moved to ICU on a breathing machine.  My xhusband, who had remained one of my very best friends, was also there for me.  They, along with my mom and brothers and sister and my 4 kids were very supportive and visited me and prayed for me.  At one point they even had a priest come in and give the annointing of the sick.  We all thought I was doomed. 

Still somehow I managed to be strong enough to make it through and on the last day of February I was released from the hospital.  I went home on oxygen, still very sick.  I was scared to go home at first but I didnt want to die in the hospital. 

It wasnt long before I was feeling better and on ARV meds.  I am learning now to get used to taking the hand full of pills I take every day and am trying very hard to accept the hand I have been delt.  It makes me feel less pityful to know that Im not alone.  I have a great family and friends and a super ASO.  My ID doctor is great with a fantastic Nurse Pract. who takes good care of me and my health. 

I know that my story is not so unusual but still, I dont think I have met enough people to know that for sure.  I would love to hear more stories and hope that the more we know about each other, the less alone we will feel.

[Lostgirl]

Hello and welcome to the Forum.  It always seems strange to say 'welcome' under the circumstances as we, I am sure, would all rather not have HIV(!) but with every cloud comes a silver lining and that is the wonderful women you will find here who will give you unconditional support and love.

I am a 52 year old Scottish 'girl' presently living in the USA and I was diagnosed only last year after my husband had been ill for some months and was finally diagnosed with HIV/AIDS.  We have been married for 14 years so it was a shock to say the least as I had always considered we had the most perfect, loving and faithful marriage.  We certainly didn't fit the profile(!) - older, don't do (and never have done) drugs, alcohol, etc etc and came from a carefree, simple country-raised life (very naive to say the least!).  Anyway, after the terrible shock of his diagnosis and then mine, I just got down to it, did lots of research (I can handle a lot when I know all the 'ins and outs'), found the wonderful Forum(!) and pretty shortly went on meds as my VL rose.  Have been 'lucky' in that I didn't get so ill as you and my husband before diagnosis and so keep reasonable health.  Have odd problems but that might just be age!!!  Anyway, I think everyone has such a shock on diagnosis - it may vary in intensity but underneath we all hope that its something 'that can be fixed with a pill'.

Needless to say, life goes on, and the daily pill regime gets easier.  We would all rather not have to down lots of pills but it just becomes part of daily life.  To be frank, I would far rather be diagnosed with this than many other illnesses (MS, Parkinsons etc etc).  My initial problems at the moment have been getting my husband to open up about what went on the past two years before he fell ill.  I had assumed he was infected when we met but gradually the truth has come out and I discovered he was infected only two years ago.  At present I am working my thoughts around what is the best thing for me at the moment, much as I care deeply still for him.  It sounds like you have a lot of support and love from family and friends, as I do, and that is wonderful.  You will find your way, as most of us do.  Don't ignore any depression - that can be helped and it sounds as though you have great medical support also. 

You are certainly not alone - there are many, many women out there who have similar stories to tell.  My aim in life now is to be able to educate other women about the risk out there whether or not we fall into any 'risk category' or not.  I also feel that the Health Care professionals need to be aware that we are all susceptible to infection and not ignore this fact because we don't fall into their 'profile'.  This aim keeps me 'sane and active'! 

Take care and keep in touch with us all.
Lorraine

[whirl400]

Lorraine:
Thanks for the reply.  Your story is so much like mine.  Im just a regular girl like you and never thought this disease would affect me. 

I agree with you about doctors who aren't quick enough to test women who dont fit the "profile".  That kind of thinking almost killed me.  I wonder why my doctor didnt test me when I found out about the STD.  A rapid test could have been done in his office with no fanfare and then we would have known before the PCP.  I think it should be a must for docs to offer the test when he finds any other STD.  I know that the doctor who diagnosed me certainly will make this offer in the future and so I know that my experience, no matter how close to death it brought me, may just save his next patient.

Keep in touch Loraine and thanks so much for your support.  I offer you the same unconditional support.

[BT65]

Well, I was in treatment for drugs/booze in 1989.  At the treatment center I was in, they tested (consensual, of course) people who entered the center.  I was in group on 02/12/89, and a counselor called me into his office.  He told me about the positive result.  I wanted to go to my room and get hysterical, but he made me go back into group and talk about it. 

Three days later, 02/15/89, I was in group again.  The same counselor called me out of group and into his office again.  He told me my husband died.  That really threw me into total shock.  He was only 29 (I was 24).  We had been together the majority of the time since I was 16.  He was a chronic alcoholic, and booze is what killed him.  When they did the autopsy, they found he had PCP (hence my infection), but listed the cause of death as "acute alcohol intoxication."

I went to school when I got out and graduated a certified executive medical assistant.  I worked for a few years as a medical transcriptionist.  Then in 1994, I got terribly ill with pneumonia.  It was a long recovery, and I started losing weight.  I had diarrhea constantly and went from 140-80 lbs in a couple months (I'm 5'9").  My t-cells fell to, it was either 4 or 2.  I was diagnosed with full-blown AIDS and the "wasting syndrome."  I've been on disability ever since.

In about 1996 or '97, I started seeing a psychiatrist who put me on a benzodiazepene (Xanax).  He also put me on an antidepressant and a sedative. The benzo and sedative is very dangeorous for me because of my addictive nature.  I got strung out.  Eventually, he also added an amphetamine (for supposed ADHD) and narcotics.  Things happened, a lot of bad things, and I was totally strung out on these pills.  I ended up in a nursing home, in a wheelchair, whacked out of my mind (really, I was having auditory and visual hallucinations), incontinent etc.

Because of my increasingly bizarre behavior, I was court-ordered into the local mental health facility.  Thank heavens.  My mind cleared, I've been clean this time for 2 1/2 years, I've had my own place that long, and I've been in school for the last year and 1/2 completing a BS in psychology.  I have about a year and 1/2 to go.  From August of last year to March of this year, both my parents passed away.  But, the rest of my family is supportive.  I have one daughter and two grandchildren, who I love dearly.  I have two sisters and one brother, who I love as well.  I miss my parents, especially my mum.  She and I were extremely close.  She never gave up on me, even when others did.  I also have a few very close friends who mean the world. 

Life goes on.  I'm so glad this forum exists.  We ladies need each other, even if it's only the form of these forums.  Hang in there!  Things do get better.
  Luv,
Betty

[Lostgirl]

Hi Whirl400: glad my words helped in any way whatsoever.  Keep strong.  We are all there for you.  You will have times of extreme emotions, but as Bettytacy said, it gets better.  Believe us. 

Bettytacy:  Wow!  You are incredible.  Well done on your studies and your life-style turn around - that is such an encouragement to everyone out there.  I know what you mean about missing your mum.  Mine died two years ago, (my father over 20 years ago) very suddenly (before we knew about the HIV diagnosis) but I was very close to her and I just know she would have been there 100% for me and I would have been able to talk to her about anything.  She was always so accepting about everyone and everything.  Nobody was ever turned away from her door, regardless of any circumstances.  I am so glad you also have such great support from family and friends.  It means the world and is priceless, isn't it?

Regards
Lorraine

[MOONLIGHT1114]

Hi GFs~

I've *bumped* the "By Way of Introduction" thread to help the newer members become better acquainted with us.  I am Reply #22 in the link below.

Welcome and big hugs to all of you! 

http://forums.poz.com/index.php?topic=11765.new#top

~ Cindy in Maryland

[Karmoni]

I'm 26 and was diagnosed when I was 3 months pregnant and 23. My first thought was, "OMG!! How am I gonna tell my parents?!?!".  As I walked out to make another appointment I collapsed at the nurses station. It had finally hit me.  I have HIV and it wont EVER go away.

I was stupid. I got involved with an older married man ( I didn't know was married until months later).  He disappeared the day I told him I was pregnant, which unfortunately was 2 months before my diagnosis. How I wish now that I had known before he disappeared. Would have liked to send him off with a nice memory of me . But in all honesty I am not mad at him at all. I am responsible for myself and thats that. I should have taken better care of myself.

Now, 3 years later, my "baby girl" is 2 going on 15... I'm still going through alot emotionally and stuff but I'm healthy, well as healthy as you can be with an illness like this right?  I'm undetected and my CD4 is above 1000.

[Winiroo]

I posted my story in the link that was mentioned above.

My post
http://forums.poz.com/index.php?topic=11765.msg218250#msg218250

I was also pregnant when I tested postive. The only thing different about me that what is in the article is now I am 36 and I dont work for the insurance agency anymore and winiroo.com isnt mine anymore.

[netta]

I was engaged to a man who was and ex iv drug user, back around 1985 - 86. I had already had 2 kids from a previous marriage. He got sick all of a sudden and wound up in the hospital i n quarentine, no one every told me he had aids. It was very new then and thought of as a gay mans disease. I new something was wrong cause he didn't get any better. We eventually broke up because he got so sick, and I knew he was keeping something from me. He went home to live with his parents, he got so sick I didn't want him to die on me. I was so scared! he died about a year later and everyone but me knew and said he died of aids!
Of course i went into shock and denial, for years and years, untill 1990 when i got tested and was called back  to the clinic because of my results being positive. I never went ! I eventually moved south and ignored it untill I got phenmonia in July of 1994 and had to be hospitalized. Thats when I could no longer ignore the facts and my doc tested me again, i already knew i was poz. I was full blown with aids at that time the test came back . I almost had a nervous breakdown. I was not ready to die, so I got busy with finding help and education about aids. I got hooked up with the only aids clinic in the county. I had the best doctors and thats why I'm alive today,  for the grace of god.I prayed to god to live till my kids finished high school. So many people I met through the clinic were dying around me. I was very close to some of the women, it was very painful to go to funeral after funeral. I have not only lived, but have seen my kids graduate college , get married and have babies! it has not been easy, I ahve depression and have been through hell with relationships, but i am still here andv ery thankful, I plan to live till my 80s. I am a long term survivor. My doc of 14 years  says I am a miricle.

[100proofBrandy]

first hello and welcome
there is alot of wonderful support here !!! second here is my post from when I first posted my story I dont know how to drop the link so I just copied and pasted

hello fellow Poz
I have been surfing this site for a few years and thought it was time to introduce myself
my name is Brandy I'm 29 (for the 6th time  ) actually 35 I've been poz for 11 years and have know for 9 of them. here's Little back ground. 11 years I was a bartender. yeah I was in to the speed at the time it helped with the long hours not an excuse! one night I wanted to get a tattoo a friend of a friend did work so we got together and I jumped into his van ( mistake I was high and wasn't thinking about that I didn't know this guy) we drove all over the place until I was lost ( which isn't hard I get lost in a one way drive Thur) we finally stopped in some junk yard. . .
he pulled a gun ( I wont give details ) the short end of is he raped me for 6 hours I was shot at it went through my hair( I smelled the gun powder for years) and he beat so bad you didn't even know who I was I looked in the mirror and couldn't see me, for what ever reason he drove me back to the bar I worked at and pushed me out of the van and drove off. . . ( please dint feel sorry for me I have come to terms with it and if it hadn't been for the drugs I would have never gotten into the van with him) I was found in my shower by my roommate later that night( she wasn't even sure it was me except I had a tattoo with my daughters name on my back) she cleaned me up and got a few of our friends to help watch me as I recovered. no I didn't go to the police ( I was a bartender who used ) I would have ended up on trial ( I have to live with that ) because a few months later the same guy raped a 13 year old. I ended up moving to the desert Palm springs I got pregnant I was happy and clean and the nightmares had slowed. when one day I got a call for the doctor I needed to come in it was my blood work I didn't think anything of it. I went in

        they put me in a little room all white. . . I waited for the doctor. a lady doctor came not my doctor I had never seen this doctor she say in a voice real low " Brandy do you know what HIV is ?" yes I replied the floor dropped from my feet the room started to spin " she goes on to say " well you have it he res a card go see this doctor" I looked at grabbed my belly and said " my baby" that all I could say she said the new doctor will get you on meds the baby should be fine" and she walked out. . . as I was leaving all the nurses were looking at me like I was a freak show just watching not saying anything... I called my ride I cried for weeks I had thought the only thing the guy had left was nightmares... then I remembered the little girl and my world crushed in on me. the nightmares came back. ( the baby is neg) I didn't got on meds right away after my tests came back I got more news this doctor says " Brandy your counts are concerning you CD4 is 54 and you have cervical cancer " what does this mean I ask " Brandy you have AIDS" and I was thinking it couldn't get worse but the doctor goes on to say I'm sorry but you have about 3 years if you handle the meds well" WHAT. . .

    I thought well if I'm going to die so soon I'm going to go out partying after the baby was born I got bad in drugs for years

one day I woke up cps had taken my kids the boyfriend was god only knew where. . .  I realized that I was killing my self not the decease I checked myself into a recovery home... I try ed to get the kids back but the lovely doctor had reported to the court that I had about 3 years so the judge said he couldn't give them back when I wouldn't live to see them to adulthood. I understand the judges view he didn't know any better he was going on what was best for my children... its been 5 years   yes I'm still clean I'm now in college I'm a psychology major specializing in HIV/AIDS mental health. I an advocate for hiv awareness and mentor to newly hiv poz women at my local hospital... My oldest daughter recently found me and has moved in she is going to college with me in the fall  and I now have contact with my 15 and 16 , , ,  so all in all things couldn't have turned out better. . . the funny thing is I'm a better person then I was before all this happend. I cant re get what has happend to me because I love the person I am today and I wouldn't be that person if not for the things I went through to get here 

[al]

Whirl 400,  I new and I'm not sure I am doing this right.  I wanted so much to comment on your story. Thanks for telling it made me want to try.  I am 60yrs. old and very much afraid. I also just found out I have diabetics.  I'm fighting health issues all the time.   I also was divorced after 28 yrs. My x at the time fell for someone younger. We all no that story.  I let myself care for someone after 5yrs. This person I felt young again, then the pain. After 4mts. he told me he had HIV.  I have been living with this for 7yrs now. I forgave him and now he told me he wants to have a sex change.  What else could go wrong. I feel so lost and lied to , I fell I will never trust anyone again. I need some friends.  Help Alice

[daisychain]

Oh god I cried reading some of these stories your all such courageous women.

Well my story here goes, im 32 and my partner is 49, we have been together 10 months now and are engaged to be married next year. We WERE in the adult entertainment industry and during a shoot we had a condom split so as always off I went to the clinic for the routine test also made steve go aswell just to be on the safe side.

we we get a call to go back in so panic sets in however we didnt think of the hiv option just assumed it was a treatable std, we as soon as we walk into the doctors room, I felt sick, he sat us down and told us we were both HIV positive, I burst into tears and was unconsolable for the best part of 3 days, steve was quiet but stayed strong for me. The nurse was amazing and just stood there hugging me while I cried into her shoulder, she needed to take some bloods but as my blood pressure had shot up my veins were colapsing so I was left with a major bruise for weeks, anyway we went back 2 weeks later for our results and although we had assumed I had gotton the virus and passed it to steve, it was in fact the other way round.

we traced steve back to about 18 months ago and a casual fling, he remembers being sick for a few months and assumed wrongly he was burnt out from overwork, I havent suffered with any sort of seroconversion whatsoever, so I guess im lucky that I didnt go through some of the problems you girls did. Things have taken a major change for us. Life and work but I guess thats gods way of saying slow down and stop.

Im struggling so much with this, im relived we are both positive and not just one of us, I know that sounds silly but I dont know what sort of strain it would have put on us.

we are trying to get on with things and looking forward, but I still cant stop the tears.

thanks for reading
Angelx

[jennynyc7]

I thought I had posted mine already but guess I didn't.  I guess my "roller-coaster" of a life started back in 1999 when I decided to move to NYC to pursue my career in Investments. Two days after I moved my father passed away, ironically ( you will soon see a trend with February's) on Feb 14 then a few short years later I escaped near death in the terrorist attacks of 9/11.  I was evacuated after the first plane hit and was stading directly under the WTC when the 2nd plane came.  After 9/11 I decided it was time to move back home to Kentucky, it was just too much to take living there. My current boyfriend, who was born and raised in NYC moved to Kentucky with me. That was in 2002. In 2004 we had a daughter and another in 2005, 13 months apart. In February of 2007 he left us and moved back to NYC. I was left all alone with a one and two year old. Soon after I met the love of my life. He was 43, I was 32. We fell in love quickly and became engaged. He was everything I ever wanted in a man. A well respected retired Special Forces/Ranger for the US Army, just an awesome well-rounded man. I became pregnant a few months later (oopsy) and elected to be tested for HIV during my pre-natal appt. It came back negative. That was June 2007. I lost the baby a few weeks later. By the end of the summer, we had grown apart, myabe it was the loss of the baby, who knows, perhaps we rushed into a relationship too quick, anyways, we split up. Months went by and I didn't hear from him. Finally he called me from the hospital. He had been sick for 3 weeks with some unknown stomach ailment that the Dr's couldn't pinpoint. They just said for some reason he got a stomach virus that he couldn't fight (ummm, hello, clue # 1). Anyway, we got back together in September as if a single moment had never passed us by. In Novemeber he got another "stomach virus" that last 2 weeks and ended up causing a severe case of pancreatitis (clue # 2). Anyhow, we were never really intimate w/eachother too much and on Dec 24, 2007, we were. On Jan 1st, we went to San Antonio, TX and I came back early as it was a business trip for him and I had to get back to work. When I got home I felt awful, as if I hadn't slept in 2 weeks, then my joints started aching. I chalked it up to the recent plain ride and all the walking I did in TX. A couple days later I began to get diarrhea and the aches were unbearable and I had a fever. I deceided to go to the ER to get looked at and they did regular blood tests and sent me on my way saying I had a viral infection. The next day I woke up with a rash from my torso to my chin, it didn't itch and was not raised, it was like blotches everywhere. I went to my regular Dr who was baffled, he thought I had the measles. He did some specific viral tests, like Epstein-Barr and CMV along with an HIV test although he felt my risk was relatively low. A week later I was admitted to the hospital with what they thought was leukemia. Apparantly the blood draw that my reg Dr did in the office came back awful, my wbc and platelets were so low that I had to be in reverse isolation and was headed for a transfusion.  The oncologist saw me the next morning and said my repeat count was normal and that he thought leukemia was out of the question. He did however inform me that my HIV test had come back and that it was indeterminate and assured me that this happens sometimes when your body is trying to fight off some sort of infection, as I had been earlier in th week. He said if I wanted, I could retest in 6wks. In the meantime I asked my boyfriend to go get a full work up and he did. Two wks went by and he went back to get his results and sure enough he was positive. I was still convinced that it was a coincidence but knew better deep down. The next 2 weeks were unbearable. I tried anything I could to get some kind of quick test but nobody would allow it. I was just told I had to wait for the 2wk health dept test. I even went to the ER complaining of chest pains and mentioned while there that my fiance had tested positive, therefore I had been exposed and the denied me a test. Finally my regular Dr pulled some strings and got me into an infectious disease Dr even though I didn't have a documented poz test. Based upon my timeline and the indeterminate test, he went ahead and skipped the hiv test and did a viral load. On feb 12, 2008 I was officially diagnosed with a viral load of 95,000 and cd4 of about 585. We both decided to start meds right away since his #'s were not good. He thinks he was infected about 8 yrs ago from his ex unfaithful wife. Anhow, we are no longer together, too many reasons why, HIV does not have anything to do with it. It is very painful thought because he is vry much in love with me and calls me daily crying, but I can't be with him, not anymore. I accidentally met someone else, he is actually my new neighbor and we hit it off immediately, although I am not rushing into anything---ever again. I did tell him my status on our first date and he is fine with it. whoooo, that is my story and I am sticking to it (oh and I don't have time to read back through and check for errors)

Jen

[Winiroo]

Just wanted to say I've enjoyed reading your stories.

[Queen Tokelove]

Wow, those are some stories. I think mine is in Cindy's Intro thread but also in my blog if you hit the link below. But it's funny how some of our stories are so much alike.

[tendai]

thanks for sharing..

[Snowangel]

In Dec 90 , I had just started a new job and had new health insurance so I went to the OB and had all the tests run.  Everything was negative. I met a guy not too long after that and thought we had similiar interests, I asked him if he had been tested and he said he had and was good. I should have used a condom anyway. My concern, back then, was getting pregant and I was on the pill.  Everything turned out to be a lie which I figured out after it was too late - the mental, verbal and physical abuse had already started.  I exceled everyday at my job and went home to a living hell.  To make a long story short, he ended up in jail and finally told me about the HIV.  The abuse continued while he was behind bars.  He threatened to call my job, threatened have someone physically hurt me and my mother.  I was alone and had no one to turn to.  I stayed with him because I was too scared to do anything else.  I made the mistake of telling him- the one thing that I hated about being poz was that I was never going to be able to have kids.  He got me pregnant by slipping off the condom and I had my son in 98.  They are not lying when they say children are blessings.  It only took one time of me seeing fear in my sons eyes and I figured out how to get away.  It was a long, hard road but we survived.  I finally told my mother about my HIV status and what was really going on with my sons father.  She was scared at first but I took her to meet my doc and I had a wonderful ID nurse that sat down with her and explained everything..My son was seeing his father every other weekend but he is back in jail for violating a restraining order on his wife.  I found out, by talking to her recently, that he has done pretty much the same thing to her.  He waited a year and a half to tell her about the HIV, and when he did tell her , he told her he just found.  Luckily, she is negative.  He is still an abusive, mean asshole.
I met my fiance online in 99.  We were off more than on until 03 when I had the trip  lets.  A week after he found out I was having 3, he took off.  I was put on bedrest at 25 weeks and had the babies at 29.5 weeks.   I can't remember when thier father showed back up, they were at least a couple of months old.  They are 5 now and will be going to kindegarten next week. 
All in all I am very lucky to have been blessed with four beautiful, healthy children.
I cheated and copied and pasted this and just changed the things that have changed, like my sons father being in jail, ages.


Thanks everyone for sharing your stories.
Snow

[riverlassie]

Basically my story is simple. I was an active herion /coke addict/user for 20 years. And when strung out one makes bad choices such as i did. I know the exact moment I got infected.So I blame only myself. But the amazing part is that with the acceptance of this illness came a relationship with God. And I now realize that this is a broken road that lead me to Him and to be able to reach out and to help others in seeing that life isn't over. on the contrary life is just beginning in a more precious way. So her i am co-infected for 20 years on meds for 15 and living a life that is full of blessings . My life is restored to more than i ever could of imagined.From many county jails, womens prison , to born again christian , a marriage thats been sealed by God , a wonderful home and a mission to touch other lives as mine has been ..........peace to each and health to all...............

[Tatenda]

its taken me a few hours to read all the posts and then follow that other thread on 'our stories' from 2007 all i can say is there are very strong women here.  and i am humbled to be associated with you all. and each and evryone one of you holds a specia place in my heart.

i have to feed my daughter so i will be back in a few minutes

[kajnjewel]

My name is Darlene Bouse' (pronounced Boo-say). I am a 59 year old, grandmother of four, mother of three sons and the oldest sibling of seven.  I live in Louisiana with my mother and youngest sister. 

I was infected with the disease mid October 1989.  I was being tested ever so often since 1987 due to being date raped.  My last negative result was in Feb. 1989.  So I decided to wait awhile to be tested again. However, on December 19th, 1989 an ex boyfriend called me and said, “I have AIDS”.

TOTAL panic hit. I was so scared. I knew nothing about HIV/AIDS back then other than that a person looses weight and dies within a couple years.  I went to the health department and was tested that same day.  The results took three weeks to come back due to the Christmas and New Years holidays.

It was pure torment waiting for the results. I lived in fear and cried an awful lot. The ex-boyfriend called me the day before I was to get my test results and told me that the test would come back negative because he only said he had AIDS as a joke since he didn't like the fact that I was dating again. 

My oldest son took me to the clinic to get the results.  After what the ex-boyfriend said, I was expecting the results to come back negative. However, when the nurse told me I was HIV+ I started crying and couldn't stop. She tried her best to comfort me.  I couldn't believe what I was hearing. 

I became angry at God, men in general, and life as a whole.  Fear like I have never known hit me and took over my life. My son said I was white as a ghost when I came out and he knew the results were not good. I felt very much like damaged goods. I went into shock, cried for days, many times curled up in the fetal position with my son and girlfriends holding me.  I am so grateful they were there because I know without a doubt I wouldn't be here today if they hadn't been.  I would have committed suicide.

At first, I thought I was infected due to being raped because I honestly didn't think I could get the disease since I wasn't gay, never had a blood transfusion, nor used needles and Glen only said he had AIDS as a joke.  Not once did I really hear” that someone could get it by having sex. After all, I wasn't promiscuous, heck I wasn't even crazy about sex.  I had only been with four guys in my life: an ex-husband of 21 years, the guy that raped me, Glen, the ex-boyfriend of two years and the guy I was dating at the time. We had been dating for three months and even talked about being safe if our relationship ever got physical because of being with others.

However, around October 19th, after a wild night of partying, dancing and drinking we wound up in bed and had ONE wild night of sex.  Due to the alcohol, we were not thinking about being safe – we just did it.  I thought like so many that you can’t get this disease by just having sex once – you had to be really a sexpot. Well, I am here to tell you that it CAN happen because all it took for me was ONE time with the wrong person!

I was so much in denial that I made the docs retest me three times before I would travel to Louisiana to tell the rest of my family that I was HIV+, but all three tests came back positive just like the first one did.

I was so scared my family would disown me like others I had heard about being disowned by family and friends that had HIV/AIDS. However, to my total surprise, everyone was very supportive.  They all cried with me, hugged me, and asked me why I was so scared to tell them.  They ALL said I was their mother, sister, daughter, etc. and there was no way they would disown me and that they would be with me until the end. But, as time passed, my children had children of their own, and the youngest son began to pull away for fear that his children might contract the disease.  To this day, the son that went with me for the results tells me that all I need to do is “Think Positive and IT will go away”.  Yea, right! 

For the first nine months after diagnosis, I gave up on life, quit school, and became very angry, depressed, and even suicidal.  My AIDS specialist told me that I would be dead in two years if I didn’t get a change in my attitude because the stress was taking a huge toll on my immune system and if I didn’t get an attitude adjustment I would die much sooner than I needed to since I should be able to  live 10-12 years before the disease would progress enough to kill me.. He went as far to say I was committing suicide and if I really wanted to end my life then I was doing a good job at it. That was my wake-up call! I realized I was not ready to die!  I started attending support groups and learning all I could about the disease.

I was especially angry at men - all men didn't matter if they were straight or gay because at that time I thought I was infected due to being raped.  So you can imagine how I felt when I walked into my first support group meeting and saw only men.  I started to leave and thank GOD one of them asked, "now where do you think you are going Missy?  I said. "anywhere but here".  He asked if I was infected with HIV and when I relied "yes", he said that I really should stay and moved over and made a place for me.  The guys said I was so angry and quite.  I mainly just sat and listened while at the same time threw daggers at them with my eyes.  Thank goodness some of the things they were saying sunk in.

I saw 14 guys in various stages of the disease laughing, joking, and professing this great love for life in spite of being infected with something that would one day kill them. I heard them say they had HIV/AIDS – BUT the disease did not have them. Before the meeting was over I knew that I wanted what they had!  I am so grateful for the one that encouraged me to stay and that I didn't turn and run which was my general way to handle things.

I tried a couple AIDS trials/studies that made me get very sick. In the early ‘90s there were only three HIV/AIDS medications on the market.  They all made me deathly sick so much so that I stopped all trials and did without any kind of medications until 1995.

In 1995 I had to quit working due to my disease causing major cognitive problems and my disease was progressing toward the AIDS stage faster than normally since I had a very aggressive and strong strain of the disease.  Mom asked me to move back to Louisiana so that I could get reacquainted with my family and be taken care of by them. So I moved back home in 1996 to die.  I sold my life insurance policy – paid for my funeral expenses, paid off bills, and do what so many people do when they get money - go to Disney World.

Shortly after moving to Louisiana, I started on the new protease inhibitors.  At first, I was taking up to 40 pills a day – all at different times of the day - some with food, some without, some every four hours, some every six hours, etc.  It was so hard to stay compliant but I did. I am currently on my seventh regimen. I am only taking 15 pills a day.  Of those, six are for HIV, the rest are for side effects and chronic depression.

My meds cost approximately $1,800 a month. There was a time when the state of Louisiana and federal government helped. But most of the time I was paying $300-$500 a month out of pocket.  My little $600 disability check didn't allow me to do much more than pay for meds and occasionally other things.  Therefore, I started back to work to pay for my meds.  Since I am on disability I am only able to make an additional $800 a month.  If I hadn’t been living with my mom there was no way I could have made it and trust me I tried to live on my own because I really didn’t want to be self sufficient and independent. 

Thank Goodness, I now have Medicare Part D and since I am working part-time, I am able to get a Medicaid supplement for $80 a month in Louisiana to help with other medical bills that Medicaid doesn’t pay for.

The side effects, at times, were terrible. I have suffered with diarrhea, insomnia, stomach problems, headaches, mood swings, liver problems, high cholesterol, developing heart problems, and the list goes on and on. Because of the side effects of all of the various meds I have been on, I have been close to death twice, had body changes, developed fibromyalgia, and many other ailments.  However, I am still free of any opportunistic illnesses and I am still only HIV+ and haven’t progressed to the AIDS diagnosis.

I returned to work part time in 1999 for an AIDS agency as an administrative assistant. I changed jobs and returned to school, finally graduated with a BS in Healthcare Administration three summers ago of 56. I am only able to make $800 a month because I am on disability not because of HIV but mental problems. I have had two mental melt downs (one before HIV and one after HIV).

However, my disability payments were stopped because I had been working more than three years even though it was part-time. My boss is fantastic and carries any extra hours I may make on the side in case if I get sick or need extra help for medications, etc. so that I can keep my Medicare benefits without losing them. I do not have the energy and stamina to work a full 40 hours week.

HIV has brought up discrimination issues with people in my life at times. I have lost friends, relationships with men, doctors, and have had insurance problems because of discrimination.  But my true friends have stuck by me. When I am faced with ignorant comments or questions, I respond by asking them how they would feel if I was their mother, aunt, sister, etc. and if they would still discriminate.  I see ignorance about this disease as a door to educate.

Today, I am an AIDS activist and educator and cherish the moments I have spent helping make a panel for the AIDS quilt and adding it to the many others.  I have pretty much accomplished everything I wanted to do in life, except publishing a book on my life before and after HIV; especially, since so many people think my life would make a great mini series but have no idea how to do so. 

I speak at engagements about the virus whenever and anytime I can. I dearly enjoy putting a face on this disease because so many people, especially women, of all ages, races and color are getting infected in spite of all of the education.  I have been in the newspaper, on local TV programs, in magazines, on the radio, helped start the HIV/AIDS pen pal program for a university in Orlando, Florida. Educating others and putting a face on this disease is like medicine to my soul.

Some of my proudest moments since infection are winning an Unsung Heroes Award for my volunteer work, starting a drop-in center for people living with HIV/AIDS in Galveston, TX and finally graduating at the age of 56 from college after trying three times for a BS in healthcare administration.

I give credit for living so long with this disease to the help I received from the guys in my first support group and the suggestion from my AIDS doc to get an attitude adjustment.

I came across a great Survival Kit for life while at a retreat. It helped me to cope with everything in life that happened to me and is helping me to live the rest of my life with passion in spite of life itself. (You may have heard or seen such a survival kit before; but. this is my take on it).

I honestly feel that everyone really needs a special Survival Kit such as this one! I really would like to share it with you all now. Therefore, this is MY GIFT TO ALL OF YOU!

Below are the items you will need for this survival kit:
1.  A Toothpick
2   A Rubber Band
3.  A Band Aid
4.  A pencil
5.  An Eraser
6.  A Slice of Chewing Gum
7.  A Mint
8.  A Candy Kiss
9.  A Tea Bag

Let me explain:

1.  The toothpick is to remind me to pick out the good qualities in others and myself.  My good ole grandfather used to say that if you can’t say something good about someone then you shouldn't say anything at all. He went on to say that if all you see are terrible qualities in others then what you are really seeing are the qualities that masked yours. OUCH - that one hurt.

2.  The rubber band is to remind me to be flexible because things may always go the way you want it to but it will always work out in the end! I am so grateful that I was flexible. Without flexibility, I would have snapped and been in a mental institution with all of the trials and tribulations I experienced in my lifetime. However, even though I felt stretched to the limits at times, it was nice to know that I was able to bounce back.

3.  The band aid is to remind me to heal my hurt feelings, as well as, others’ around me. The way I dealt with hurt feelings was to write about them while I was hurting. After doing so, I was able to then talk about them in a more sensible manner without saying things that I regretted later. I was then available to be with others when they were hurting instead of only being in my pain.

4.  The pencil is to remind me to list my blessings everyday. I must admit that I was truly blessed. I was blessed that I became positive in December, 1989 instead of the early 80's. I was blessed that when I did start on HIV meds that I did not have too many problems. I was blessed that I was able to live with so much hope than there was before the new meds. I was blessed because I had family and friends that really loved me but above all else, I learned to love myself.  I was blessed because I had a wealth of friends that I would have never known had it not been for being HIV positive. I was blessed because I had a family that was very supportive. This list could go on and on.

5.  The eraser is to remind me that everyone makes mistakes and that you need to forgive yourself by erasing those mistakes and learning from yours. It was great to know that I was not the only one that made mistakes. Most of my life I felt that I was a mistake! However, I finally came to accept that this was not true. My God doesn't make mistakes; therefore, I was not a mistake. I was able to look back over the many mistakes I made; and, in doing so, I learned many great lessons.

6.  The chewing gum is to remind me to stick with it because I can accomplish anything with God and friends onmy side. One of the things I learned was that I was not a quitter. I stuck in there no matter how much I wanted to give up. There was something deep within that would not allow me to stop. For this, I was so grateful.

7.  The mint is to remind me that I am worth a mint to my family, friends and God. I am truly a priceless jewel. I am a millionaire, the child of a King with the inheritance of a mansion in heaven so no matter how poor I may be been on Earth, I am truly rich, indeed, because knowing that all of my friends and family are sheltered in the arms of my God has helped me to have nothing to fear at all but fear itself.

8.  The candy kiss is to remind me that everyone needs a kiss or a hug everyday. I try my best to be there for others as much as I can while at the same time be there for myself. A hug is inexpensive and so easy to give. It is so rewarding when you can see a person light up and smile. It really doesn't hurt to spread a little sweetness to others. In doing so, you can get some kindness and sweetness in return.

9. Finally, the tea bag is to remind me to relax daily and go over my list of blessings. Wow, this simply means that it is okay to take time for myself!!! Most of my life I felt I was being selfish if I did so. I try to count my blessings daily as well as take time to just be with "me" simply because "me" is okay.

I hope you can use this survival kit as well. Adjust it to fit yourself. Hopefully, it will be a blessing to you as it was to me.

Above all, know that I am grateful to be HIV+ because I have learned to appreciate life. You see, I am not dying with this disease; I am living with this disease.  Sure, I know that some day this disease may take my body, but I will never allow it to take my spirit because life IS worth living and by golly, I AM going to live it with a passion!
~~~~~~~~~~~~~~~~`
When I was first infected I honestly thought my life was over when in reality it had just begun!

Darlene (aka kajnjewel)

When you was born the world rejoiced and you cried; live your life in such a manner that when you die the world will cry and you will rejoice!

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[Dragonette]

Thanks so much, Darlene  I'll let is sink in for a while now

[BT65]

Thanks for sharing your story, Darlene.  I also tested positive in 1989, 3 days after my first husband died (and I was in treatment for drugs/booze).  I got an AIDS diagnosis in 1994, due to the wasting syndrome.  But, I did recover, very slowly.  I went through the early meds, and have never really had a time when I was off meds since, oh, 1990.

I have a supportive family also.  I lost both my parents in the last year, and I was so grateful I was able to spend time with them and take care of them before they passed.  I had to go through treatment again, a little over 3 years ago, and I'm extremely grateful for every day above ground (well, some more than others).

Don't feel bad about the age when you got your degree; I'm 43 and just completing a BS in psychology.   It's an accomplishment you can be proud of.

I loved your story.  It touched me deeply.  Please stick around here and join us in the "ladie's thread" if you haven't already.
  Luv,
Betty

[kajnjewel]

Thanks Dragonette and Better so much for your loving comments.

It is so good to be home again.