KNOW THE FACTS AND THEN ALLOW ME TO STILL BE LOVED

I hate when uninformed people shy away from me because of my status.  What I hate even more is my own edit of affection because of their ignorance, but because of the experiences I have had with stigma , I refuse to let others close to me be affected so I keep it simple. That’s one of the reasons I choose to tell people my status from the very beginning.  Even though I or others may encourage a person to become educated does not mean that they will.  They may honestly think they are protecting loved ones by informing them and others of my status.  I get that.  I really do.  I just wish they would take a minute to ask me, or google information about HIV/AIDS.  FIND OUT THE FACTS:

HIV is spread primarily by:

• Not using a condom when having sex with a person who has HIV. All unprotected sex with someone who has HIV contains some risk. However:
• Unprotected anal sex is riskier than unprotected vaginal sex.
• Among men who have sex with other men, unprotected receptive anal sex is riskier than unprotected insertive anal sex.
• Having multiple sex partners or the presence of other sexually transmitted diseases (STDs) can increase the risk of infection during sex. Unprotected oral sex can also be a risk for HIV transmission, but it is a much lower risk than anal or vaginal sex.
• Sharing needles, syringes, rinse water, or other equipment used to prepare illicit drugs for injection.
• Being born to an infected mother—HIV can be passed from mother to child during pregnancy, birth, or breast-feeding.

Less common modes of transmission include:

• Being “stuck” with an HIV-contaminated needle or other sharp object. This risk pertains mainly to healthcare workers.
• Receiving blood transfusions, blood products, or organ/tissue transplants that are contaminated with HIV.  This risk is extremely remote due to the rigorous testing of the U.S. blood supply and donated organs/tissue.
• HIV may also be transmitted through unsafe or unsanitary injections or other medical or dental practices.  However, the risk is also remote with current safety standards in the U.S.
• Eating food that has been pre-chewed by an HIV-infected person.  The contamination occurs when infected blood from a caregiver’s mouth mixes with food while chewing.  This appears to be a rare occurrence and has only been documented among infants whose caregiver gave them pre-chewed food. 
• Being bitten by a person with HIV. Each of the very small number of cases has included severe trauma with extensive tissue damage and the presence of blood. There is no risk of transmission if the skin is not broken. 
• Contact between broken skin, wounds, or mucous membranes and HIV-infected blood or blood-contaminated body fluids. These reports have also been extremely rare. 
• There is an extremely remote chance that HIV could be transmitted during “French” or deep, open-mouth kissing with an HIV-infected person if the HIV-infected person’s mouth or gums are bleeding.
• Tattooing or body piercing present a potential risk of HIV transmission, but no cases of HIV transmission from these activities have been documented. Only sterile equipment should be used for tattooing or body piercing.
• There have been a few documented cases in Europe and North Africa where infants have been infected by unsafe injections and then transmitted HIV to their mothers through breastfeeding.  There have been no documented cases of this mode of transmission in the U.S.

HIV cannot reproduce outside the human body. It is not spread by:

• Air or water.
• Insects, including mosquitoes. Studies conducted by CDC researchers and others have shown no evidence of HIV transmission from insects.
• Saliva, tears, or sweat.  There is no documented case of HIV being transmitted by spitting.
• Casual contact like shaking hands or sharing dishes.
• Closed-mouth or “social” kissing.

All reported cases suggesting new or potentially unknown routes of transmission are thoroughly investigated by state and local health departments with assistance, guidance, and laboratory support from CDC.

It amazes me that with all this information available people still have unprotected sex, don’t get tested or ask others to be tested prior to becoming intimate.  Do you stop and think that when you are having fun and hanging out..having drinks..smoking and one thing leads to the next..if this person is safe?  Should I take their word even though I just met them?  We have mutual friends so they should be cool right? Can you even have a real thought while in the heat of the moment?  (I know I can’t if it’s like that..If the little man in the boat is rocking like there’s no tomorrow..shoot..If it’s really like that I can’t even remember how to breathe…Sorry..I digress)   The reality is I know how mistakes could and can happen.  You do too, so if you can’t police your own lives, why are you quick to police mine.   It took a lot for me to go public with my status and regardless of the hell that may come, I refuse to regret my decision. TRUST..I will take the heat in a heartbeat if it helps others not to repeat or make the same mistakes I did.

Well Hello There

Hello,

My name is GG. I am a 44 year old woman living with HIV.  This is my story.

In April of 1997 I met someone who I really liked and wanted to start a relationship with. We both agreed to get tested before becoming intimate.  I went to the lab and had my blood drawn on a Tuesday. Now, working in a field where I knew how long certain test results took to come back I expected to get the results in 48 hours.  I also planned on having a “let’s get busy” celebration as soon as it was received thinking that would be a great way to start my weekend.  By Thursday I was getting a little anxious.  Really needed that paperwork to prove I’m clean and get down and dirty. LOL.   Then Friday came.

I looked at the results, “ POSITIVE by Elise and Western Block”.   I rubbed my eyes, closed them, kept them closed for a minute then read the results again.  POSITIVE BY ELISE AND WESTERN BLOCK.  O.k. I’m a little stressed from work, got a lot going on, now feeling a severe headache..Let me take a walk around the block to clear my head and check again when I get back.  As I’m walking I’m numb.  No logical thoughts are anywhere to be found. I get back to my office, read the results and finally let it sink in…I’m HIV positive.

I called my Doctor and he set up an appointment to see me on Monday….Monday.  I didn’t realize I was crying until my boss came out and took me into her office.  She asked me if I was o.k..  I gave her my results and we cried together. All I could think was “ I need Lucy”.  Lucy was and still is my best friend.  She new everything about me..good and bad..and still wanted to be my friend.  I NEEDED LUCY.

I don’t remember all I said.  She said she was on her way. Just like that, “I’m on my way.”

I then decide to call my mom who worked across the street from my job. I remember her saying, “It’s o.k…we can get through this.” She said she’d go to my appointment with me on Monday.

During all of this, the person I was seeing (let’s call them YY) was on their way to pick me up from work.  I don’t know how it came out but I told them.   I had to do this without falling apart because my kids were in the car. I had to keep it together.

YY got my kids settled.  Fixed dinner and started them on their homework.  I was curled up in my room in a ball. I remember them saying they loved me and would always be there for me.  I also remember never getting their results…

For the life of me, I can’t remember much of that weekend.  I remember going to the Doc with my mom.  How she held my hand. How she asked if we could get a second test to verify and my Doc explaining that Elise and Western Block were two different tests that verified the results before the lab posted it.  O.k…now it sinks in for her.  My daughter is HIV positive. What’s next?? What does she need to do?? How long does she have??  How long do I have to live????????

I was the second patient my Doc had who was HIV positive.  He admitted to knowing very little, but  was going to consult with specialist so that he could continue to give me the care I needed.  He was really very sweet and I appreciated the care he took with me as well as my mom. 

Me…I have a very bad habit of looking up ailments on my own.  That’s not really a bad thing, but I take it to another level.  For instance I may be sick and my glands are swollen. I’ll look up swollen glands  and what could cause it.  The next thing you know, I call my Doc and tell him I have Thyroid disease.  Yeah..always the optimist.

I say that to say this..I looked up HIV and took away all the worst case scenarios. I knew I was going to die, just not a d.o.d.  I started thinking of goals.  Had to get it together cause I have two kids that needed their mom.  I was GOING to see them graduate.  Just let me see them graduate.  They were 7 and 9 years old.

So fast forward three days after the Doctor’s visit.  I speak to my mom and she tells me, “Your father and I talked and we agreed that we will do all we can for you when you get sick, but you can’t live with us.  We will make sure you are in the best facility and are well taken care of.”  Isn’t it amazing how you remember certain things in vivid details?

YY never proved they got tested. They still proclaimed to love me. Our first intimate act was with them wearing a glove and penetrating me with the handle of a screwdriver covered with a condom. (This was soooo NOT the “Let’s get busy” moment I had in mind)  I guess you could say my self esteem was non- existent.  YY told me that I should be thankful for them, because no one would ever want to be with me.  If anyone asked, we were just friends.  This also served as a reason for them to have other partners since I couldn’t do anything for them.  It took months for me to get from under YY, but I did.

You may ask when did I wonder who infected me?  That didn’t come until someone from the Health Department called me and asked me to identify and list all of my sexual partners in the past year or more. I had to give names and contact information.  The Health Department would notify them that someone they were intimate with tested positive and they should be tested.

The ones I had relationships with and whom I still had contact with, I told personally.  I was amazed by their support and understanding. But..there were others I had no way of contacting.  Hung out with, had drinks, went back to their place…out right after. No information exchanged.  Sex with people who were seeing other people, but I was special. They really liked me.  I started thinking back to all of my encounters…I had ideas of who could have infected me..and was embarrassed, completely unhinged because I realized in that moment that I put MYSELF at risk.  I made the conscious choice to have unprotected sex over and over again.

Did I tell my kids? What did I tell my kids? Why tell them?

I told my children about my virus two months after being diagnosed.  Why? I was going through a lot and they noticed. What did I tell them? The truth. I made bad decisions and put myself at risk. They already “knew” about HIV/AIDS through TV, and school.  They got to know about HIV/AIDS through real life..their mom.  Reality is children are smarter and more forgiving  than we realize. 

At one point my safe sex talk was me buying a Magnum condom and giving it to my son.  I said, “ Until your able to use one of these..DON’T DO IT!” To my daughter I was saying, “I don’t care what they say about it not feeling good with a condom, if they can’t respect that then they won’t respect you.”

Fortunately my kids knew how special I was. They always said, “ Yes Ma’am”, and went to their room talking amongst themselves.

What was I feeling really?

 I believed all the myths. I didn’t want anyone to drink behind me.  I didn’t want my kids to use any utensils that I ate with.  I disclosed my diagnosis to people I thought were friends to have it spread like wildfire.  Needless to say, It didn’t take long for me to weed out the real friends from the fake.  Most weeded me out.  Remember Lucy??  Eve isn’t the only pitbull in heels.  Lucy is barely 5 feet, but had my back at ALL times. Through my ignorance and pain, she held on tight.

I never asked my children how this affected them or if my openness affected their friendships.  WOW. ( I’m so sorry)

Physically, how did HIV affect me?

I was symptomatic from early on.  I had constant diahrea, kept a cold (flu like symptoms), tired, couldn’t sleep. Diagnosed early for Cytomegalovirus (CMV) Retinitis. I would have blurred vision, see spots, and periods where I would lose vision. Medications could help suppress it. Major Depression.

Let’s talk about the Meds

One of the first medications I was on was AZT.  The medication from HELL.  I could barely function.  I had to take this medication every 4 hours.  Even at night.  No matter where I was, I had to discretely take it on time.  I stopped taking AZT because I couldn’t handle the side effects.  Since then I’ve been on numerous meds. Here’s a brief list: Atripla, Combivir, Epivir, Sustiva, Retrovir, Truvada, Viread, Zerit, Crixivan, Norvir, Reyataz, and Viracept.  Now all of these medications all had their own particular side effects (i.e. nasua, sleep issues, diarrhea, kidney failure, liver failure, high blood pressure). The good news is they actual helped lower my viral load (HIV viral load is an important measurement of the amount of active HIV is the blood of someone who is HIV positive. The HIV viral load is used as a measurement of how active your HIV disease is and also indicates if your medication regimen is working.)   Having to take these medications along with medication for issues I had prior to being diagnosed (high blood pressure and asthma) and being a functioning alcoholic, I was not a happy camper.

Yeah, I slipped in the part about taking life saving meds while being a functioning alcoholic.  I wish I was functioning, but that is another story for later down the line.

Back to the medications.

 I did take them faithfully for about a year.  My viral load became undetectable and I had a healthy T-Cell count. (Your CD4 count or T-cell count as it is sometimes called gives your doctor a look at your immune system.   On a regular basis, your doctor will draw blood to measure the number of functioning CD4 cells. The higher the number the stronger your immune system. People without HIV infection have about 700 to 1000 CD4 cells in a drop of blood the size of a pea. HIV infected people are considered to have "normal" CD4 counts if the number is above 500 CD4 cells in that same size drop of blood. If the number of CD4 cells in that drop of blood ever drops below 200 CD4 cells, you are classified as having AIDS. Simply put, experts have found that when your CD4 count drops below 200, your body's immune system is no longer strong enough to prevent illness and infection. Some of the most serious of these illnesses and infections are said to be AIDS defining.)

But I felt like crap.  I stopped taking my meds. Didn’t tell my Doc. When I finally did it was years later and I had a new Doc.  She was a specialist in her field. HIV/AIDS.  My first impression: What is this little Jewish woman is going to do for me.  I’m supposed to open up to her and let her know everything I’m feeling..waiting for her to be yet another person to judge me???  My ANGEL #2 ( #1 being LUCY) didn’t do that. She kept it real from day one! She wouldn’t take my bull shit cause she could  find out the truth through my blood work..FROM MY BLOOD.

Now don’t get me wrong, I was sick off and on but I dealt with it on my own.  I took every home and TV remedy out there.  I had a fear of being hospitalized and people knowing why.  Wow..that’s funny because honestly I wasn’t  or didn’t feel worthy of people noticing me much less me being sick.  Yet I was still worried about how other people saw me. I could be healthier today if I kept up my medication regimen.

Dating:

Still rolling on the floor laughing out loud! I met some very special people, men and women.  Great support system, but umm not dating me.  My very first relationship(after YY) where someone wanted to be with me after diagnosis was with a man from Jamaica.  I was bartender and he was a customer.  He asked my out and I completely ignored him. He kept coming back and was still so nice.  I have to admit that he was everything I ever liked in a man. 6 feet..built..dreads… and educated…a “little” bit younger than me…built..dreads ..6 feet…….(sorry, I digress).  When I finally got up the nerve to accept the date, it began with “ Your hot as hell and I really like you but I have to let you know that I am HIV positive”.  He laughed. LAUGHED…Then asked what time I got off.   He was fun and I’m still thankful for the part he played in my life. Since him, I have met men who I didn’t want to risk the chance of loosing them in my life.  I wanted to keep them as just friends so that they would always be there.  Intimate relationships took you to another level. While it always started off as “I can handle it.  I’m here for you”, it changed as you caught a cold. STIGMA caused them to want to keep it just between us..after dark. I was fun, cute, but not good for public appearences. “Do you have to be so open?”  Now mind you, I was very protective of all my friends.  I knew how the STIGMA affected me, it was the last thing I wanted for them.  STIGMA..Unfortunately, being seen with me..laughing, hugging, kissing..caused them to be subjected to rumors..STIGMA.

 I made myself o.k. with being single and just having friends.  Or so I thought.  I eventually tried internet dating with positive people.  WTH!!!  The biggest shocker for me was the fact that they thought it was o.k. to have sex without a condom since we both already had the disease!!!!!!  Do you know you can become re-infected with a whole different strand of HIV virus from unprotected sex with another positive person.  Meaning, your life is more at risk than ever!!!  Why would you make the same life altering mistake again??

Depression:

I honestly believe I’ve had this for most of my life, just didn’t understand it.  Came to grips or to a point where I had to acknowledge it as I’m living with HIV.  Ways I’ve dealt with it was through alcohol and sleep.  In my most depressive state, there were times I hated myself so much I wanted to hurt myself.  I  punched myself in the head and even went as far as trying to put my own head through a wall.  That shit HURT!! O.k. maybe I don’t hate myself that much.  But I still had behaviors that were/are still life threatening.  They were just not as noticeable. Like not taking my meds..

There are times where I wake up and just can’t move. I can’t find a single thought..Tears are pouring and I just want to go to sleep and not wake up.  I can go for days like this, able to field calls and say all is o.k.. Whatever it took to get you off the line, then back to sleep.  I could make it to work, close my office door and CRASH.  If you asked me what I did that day, I could not tell you.  I remember waking up from an episode and thinking I was late for work.  I was leaving messages for people asking why they were  not at work only to realize it was not 7 a.m. , but 7 p.m.

Lot’s of stories about depression and drinking. Hoping to work through this as I’m writing.

The funny thing is..when you are alone you have all the time in the world to think.  When you are around people and you feel IT and REALLY want to give in and sink, you don’t.  You don’t want to bring someone else down.  You don’t want to admit you can’t deal. So you fight IT.  IT doesn’t go away…it just becomes more manageable..waiting.  The crash will become more explosive. 

Now as I’m writing this, I’m thinking “ so why can’t you handle this if you know what it feels like and how it can end up?”  Honestly, by the time I realize what’s happening..it’s happened.

Every day is a constant fight and I’m fighting. 

Dr’s appointments:

This one is from today…I’ll tell you about others soon. 

It was a good visit. My T-cells are holding at 273 for the past three months,  Viral load at 2,223, and my blood pressure is 130/90.  Genotype shows mutations but still allows me to be able to take HIV meds once a day.  The constant pain I feel everywhere along with the inflammation of organs is due to HIV.  The meds I will be starting should help that. Sugar level is good for now but HIV meds will cause it to go up.  Protein level is coming up abnormal, but we will be checking your kidney functions as well.  Really, this was a good visit.  14 years later and this is it.  I’m GOOD!!!  My Doc also told me that this year will be our 10^th Anniversary.  I thank GOD for the BLESSING of her!!