My story....

[Philly1972]

I’ve spent the last 24 hours reading about people’s experiences in this forum.  My story is no different…what I’m feeling is no different…I’m not even sure why I’m posting this because I know exactly what everyone is going to say.  I’ve read it all and heard it all.  I guess I just want my story to be heard.

Today is Friday, July 4th.  My membership has not been approved yet so I’m writing this before I can actually post it.  I have been getting ready for this weekend all summer.  4 days at the beach with all my friends and 2 days with family.  My best friend and I are throwing a party tonight to watch the fireworks.  Friends are throwing a huge pool party tomorrow….they have this party every year and it is the event of the summer.  Saturday night is a big dance party with a top name DJ.   Before Memorial Day I weighed 217 – I set a goal to be 200 by July 4th.  I’ve been seeing a personal trainer 3X a week and haven’t missed a single appointment (until yesterday).  I’ve exercised EVERY day, sometimes twice.  My diet has been nothing but fruits, veggies, fish, some chicken, whole grains and protein shakes.  I have hardly cheated at all.  Yesterday I got on the scale…199!  This may be the first time I’ve ever actually set a weight loss goal and reached it.  For the first time in my entire life, I look in the mirror and like what I see.  Sometimes I can’t stop looking.  I went to the beach 2 weeks ago and felt like a new person.  A confidence I’ve never had before in my life.  I could feel the eyes on me.  Guys were hitting on me and flirting with me left and right.  It may sound shallow, but I loved it – and earned it since I worked so hard on getting my body to where it was!  This weekend was supposed to be incredible….it was to be my weekend!

This past Monday I was sitting in CVS waiting for a prescription.  I saw the Home Access Express HIV test and picked it up.   I had done those tests before, but was surprised to see that results were now available the very next day.  My last test was in October and I usually get tested twice a year, so I figured it was time and I picked it up.  I chuckled to myself when I was checking out….my purchases were a prescription of Ambien, box of condoms, bottle of lube, mouthwash and an HIV test!  Oh what the clerk must have been thinking!  I did the test that night.  I spoke with my best friend and we were making plans for the weekend – I told him I was doing the test and joked that maybe I should wait a week since a result other than what I expected would put a damper on the weekend….at least if I waited, I could have “one last fun weekend”.  He told me to not even think that way. 

I put the code on my Mom’s picture – she passed away from cancer 7 years ago at only 46.  I knew she would protect me.  I dropped the test into the Fedex box on Tuesday.  My cousin, who is also one of my best friends, wanted to get together before I went away.   We decided to go to a little BYOB on my street that serves all you can eat pasta on Wednesday nights.  I figured I deserved to treat myself but made sure to work out twice that day.  She was bringing her new friend who heard so much about me and couldn’t wait to meet me.  They were to arrive at my place at 7pm.  She called at 6:45 and said they were running late and would be here at 7:30.  Home Access said the results would be made available at 6:30pm central – 7:30 my time, so I thought “oh good, I can get the results before dinner”.  I had taken a bottle of champagne out of the fridge – we were going to celebrate me reaching my weight goal – now, I thought we can celebrate this too.  At 7:28 I called – I had taken these tests before and knew what to expect.  The recording would say “Your test results were negative”.  This time it said “please hold while we transfer you to a counselor”.  Something was wrong.  At 7:30 on the dot the knock came to the door.  I shouted “I’ll be there in a minute” and ran into my bathroom and shut the door.  The counselor asked for my code and repeated it back to me.  My heart was in my feet….this did not feel right.  She said the words “your test results were positive” and it was like I had been shot.  I hung up on her.  I was in a daze….I was having an out of body experience.  I went out and answered the door.  My face must have been white as a ghost and my cousin kept asking me what was wrong.  I finally was able to speak and get the words out.  I can’t remember her friend although I know she was there briefly before my cousin sent her away.   I made my cousin call back and get the results again…..this was a mistake.  I got on the other line – she again repeated that the test results were positive – I asked the counselor how many tests they ran on my sample – 3 she said – 2 confirmatory tests.  I was shot again.  I asked how many times in the past have they had a false positive…never, she responded.  I had been shot again.

Most of the rest of the night is a blur.  I know I called my friend at the beach and told him although I don’t remember the conversation.  He became as numb as I was.  I called my other best friend who had been diagnosed 4 years ago.  I said “I’m in the same boat as you”….he didn’t know what I meant.  I was crying and my cousin took the phone and said come over….not another word needed to be said….he now knew what I meant and came immediately.  I had to confess to him that night that I had always judged him.  That was what was killing me the most….not the health concerns, but how I would be judged by others….the stigma that was now upon me.  I have overcome allot of hardships in my life….pulled myself up from what felt like rock bottom.  But I had put all that behind me….this would never be behind me.  It would be side by side with me for the rest of my life.  I was now one of them.

I now believe that this happened on New Year’s Eve….ironically, a night when I was celebrating new beginnings and a new life.  I threw a party in my new condo in the city.  It was a blast!  After the party, we all went out to the club and I met a guy….he was only 27 and very cute.  He was drunk but also very charming.  He flattered me and told me I was “out of his league”.  I’ve always had self-esteem issues – I’ve never been out of anyone’s league.  We went to the bar and I bought him a drink.  He said he wanted to go home with me so we left.  We were safe, but when he came it shot me in the eye.  I acted instinctively and grabbed my eye and rubbed it in even more before getting a wet washcloth.  Two weeks later my eye swelled up and I was diagnosed with viral pink eye.  It spread to the other eye.  I had a swollen gland in my neck, a sore throat and was very fatigued – I slept more than I ever have – in fact one day I slept for nearly 24 hours.  I went to the doctor, got an anti-biotic and was told that it was the worst flu season in years and that I had what everyone else had.  I had no reason to think otherwise.  In 2 weeks, I felt fine.  I’ve read that the chances of being infected this way are low, which makes it even harder to accept.  If it wasn’t this, then it had to have been through a cut in my mouth.  In May of this year I had my wisdom teeth removed because they were biting the inside of my cheek and causing a permanent cut – if this were the entry point, I feel just as unlucky and angry that I didn’t have them removed sooner.

I called my therapist who had helped me through some rough times in the past.  I hadn’t seen him in a year, but he fit me in that day.  I was ok when I arrived, then he hugged me and I started crying and didn’t stop for an hour and a half.  He did research before I arrived and gave me this website.  He told me that knowledge is power, but I wasn’t ready for either – it made this too real.  I promised I would look at the site when I was ready and did so later that night.  I only got as far as this forum and began to read about other people’s experiences of how they found out and how they became infected.  It helped.  I thought I was the unluckiest person in the world to get it this way.  I thought my odds of winning the lottery were better – in fact I had purchased a Powerball ticket earlier that day and checked it with much anticipation that the universe was going to balance this out – of course I didn’t win.  What helped me the most was seeing that I wasn’t the unluckiest person – others had fluke accidents like me….others did everything they were supposed to and still it happened.  I woke in the middle of the night and couldn’t get back to sleep – I began reading more stories and it lulled me back.

My cousin works at the University of Pennsylvania – she looked up doctors there online and found that one of the best doctors in the country – recognized nationally and in Philadelphia  – was at the University.  Although he has a 3 month wait list, she got a hold of him and he spoke with me personally and fit me in first thing Tuesday morning.  This should have been good news, but it just made me cry – again, it was making the situation too real.

I was supposed to be driving down to the beach this morning.  My best friend told me if I didn’t come down, that he was coming up to me.  I couldn’t bare the guilt of him giving up this weekend that he was so looking forward to, so I agreed to go.  I had allot of anxiety getting out the door – how would I hold up through the weekend?  Would I try to drown the reality with alcohol and break down?  Would I cause a scene and blab it to everyone?  Would people figure it out by my mood?

It’s now Sunday, July 6th and I actually held up great.  I cried once when I first saw my friend, but otherwise have been cheerful and having a great time – more fun than I thought I was capable of having.  We had a blast at the pool party and danced all night long.  A dance remix of the Beatles song “Let It Be” played and the words were so powerful and inspirational.  My mood feels too good.  Why am I so okay?  Am I just in denial or am I really this content with it?  Am I just burying my true feelings only to come spilling out later when I am removed from the “party”?  I still don’t know the answers to these questions.  Today I sent a text message to my friend and told him now that the party was over, reality was setting in and I was beginning to feel down, and scared about Tuesday’s doctor appointment.  He sent a text back with just the lyrics to “Let It Be”…..it was perfect.  I know how blessed I am to have him…I don’t know what I would do without him.

And when the night is cloudy
There is still a light that shines on me
Shine on until tomorrow, let it be

The “whys” and the “what ifs” are enough to drive me mad.  Why did I bring that guy home with me?  What if I hadn’t gone to the club that night?  What if I arrived 20 minutes sooner or later – maybe I wouldn’t have met him?  What if I had turned my head?  What if I had cleaned it out better – maybe rubbed my eye with alcohol?  Why do we have it engrained into our heads the risks of anal and oral sex, but never hear how susceptible our eyes are?  Why don’t they warn us and tell us what to do if it happens?  Why didn’t I have my wisdom teeth removed sooner?  Why didn’t I have a boyfriend so this wouldn’t have happened?  Why didn’t my Mom protect me?  Moving out of the suburbs and into the city last September I thought was the best thing I had ever done – I was so much happier here.  If I hadn’t had a place in the city for us to go back to, would this have happened?  The “problems” I had with living in the suburbs now seem pale in comparison and I wish I had never left.  I would do anything to be “bored” living in the suburbs again.

I know I am fortunate to have such incredible love and support from friends and family, to have such an incredible therapist who already knows me and an appointment with one of the best doctors in the country.  I know that many others go through this alone without any of those things.  I know that things are not what they used to be and medicine has come a long way.  I know I can continue to live a healthy normal life.  I know that this disease does not define me any more than my sexuality does.  I know I am not alone.  Although I know all of this, it doesn’t make me feel any better.  I don’t care right now about the support in going through it, because I simply don’t want to be going through it.  I did everything right.  I know so many others who do nothing right, but this doesn’t happen to them.  It isn’t fair.  This isn’t supposed to be happening to me – everything was going so good.  What did I do to deserve this?

[jughead]

Wow... I know exactly how you feel... Newly diagnosed here also, and can totally relate to your story.

(((((Big Hug)))))


Jughead

[BT65]

Philly1972,

Welcome to the forums.  You'll find a lot of support here.  I also urge you to get in touch with your ASO (Aids Service Organization).   They could put you in touch with a support group where you could meet other HIV+ people in your area.

You're right.  You're extremely fortunate to have support and a good doctor who's willing to see you so soon.  A lot of people don't have that.  And it does make a difference.  You'd be surprised what a difference it makes to have people around you who care and are willing to support you and who don't walk out.  Be grateful for that.  I hear stories on here from people who have others walk out on them and I can't imagine the pain that brings on top of just being diagnosed.  I have a supportive family and I'm thankful every day for them.  I just lost both my parents during the August (of last year) to March of this year range.  I miss them very much but am grateful they were as supportive as they were.

About it "not being fair," well, life ain't fair and people don't act right.  It's just the reality of living.  Sometimes we have really good things happen to us (you reaching your weight goal) and sometimes not-so-good things (just testing positive).  I understand how you feel though, I really do.  It's just a balance we have to achieve so we can handle both situations.  And you've got a head start with your family, friends, doctor and a good therapist.  Good luck to you and I hope you stick around and keep us updated on how you're doing.  Hang in there.
  Luv,
Betty

[Peter Staley]

Philly -- I'm glad your therapist told you about us.  I'm sure he will tell you that letting your head fill with "what ifs" is not going to help you deal with all this.  Like "what if" a bus hit you the next time you walked out of your home?  Should you never leave the house?  Sometimes life throws us curveballs, regardless of what we do or don't do.

Life just threw you a big one.  But it's not one you can't handle.  We'll help you every step of the way here.

Peter Staley
Founder
AIDSmeds.com

[PeteNYNJ]

Philly

I think most of us have been in the same postion you are in when first diagnosed.  I also found out through Home Access but I guess I was more prepared for a positive result then you were.

It sounds like you have a wonderful support system and a lovely life...and you will continue to have both.  Don't think of it as the end of the world.  Peter is right, life threw you a curve ball but you seem to be taking the right steps to acceptance.  Therapy, support system, good medical care are all part of making sense out of all of this. 

Come here and vent.  I know it has helped me a lot.  Keep your goals (congrats about the weight loss - I struggle with self esteem and weight issues so know how great if feels to be noticed so brag away) and keep your head up.  You are taking a proactive goal in maintaining your health and your body will thank you for it.

Pete

[David_CA]

Philly,
I also found out from a similar mail-in test.  I had my hubby call for the results while I sat on the couch with him.  Those tests always made me nervous.  Plus, I'd just gotten a letter from the state Dept. of Health informing me that I'd been named as a contact by somebody with syphilis.  Hubby dialed the number, entered my code, and waited.  And waited.  I was getting a bit nervous at this point but wondered what was taking so long.  He finally said something to a person on the other end and hung up.  When he turned to look at me I knew the results; I was HIV+. 

That was on a Friday in March of '06.  Saturday night, I googled "living with HIV" and "forum".  Guess what was one of the first links I clicked?     I had my first appointment with my ID Dr. the next Thursday for my confirmation test.  There have been a few ups and downs.  I had a bit of anxiety and a few 'freak out' spells for the first few months.  By the end of November, I was in the hospital for 8 days with a nasty case of PCP (pneumonia).  Although that was certainly a bad time, there was a fair amount of good that came from it.  I told my family about my status.  I started meds.  Most importantly, it was basically a slap in the face that forced me to accept that I was HIV+.  Not only that, I got the additional distinction of having AIDS!

My thoughts are that if you use the resources available to you (your friends, these forums and the members, your Dr's, and your family) you'll be ok.  You're right, this isn't fair, but not much in life is.  It's just the way it is now.  Past tense 'what if's' and blame won't help. Take care of yourself and give yourself a break; you didn't intend to become HIV+.  I honestly feel that once we accept this we can get back to living.  Take care.

David