March 2007 Archives

The thought of sex……well, to tell you the truth, I haven’t thought about sex in a long time, a very long time actually.

What I do think about is the loss of intimacy in my life. I’m a “skin” girl. I love the smell of it, the feel of it and the taste of it. I’ve always liked to curl up against my man’s back and run by hand along his body, while my head was tucked in the nape of his neck breathing in his scent.

Or, sitting on the couch watching television and just having the slightest bit of body contact, but it’s there and it felt intimate. Putting my hand on his leg while waiting for a table at a restaurant, using his knees as a back rest while sitting at the beach watching the sunset………intimacy.

I feel almost as if I am asexual. Where there once this vibrant, passionate and sexual woman now stands an insecure, shy, diseased female.

There is a survey on POZ that asks “Does HIV Make You Feel Less Sexy?” and when I read that I screamed “HELL FUCKING YES IT DOES!!”

Because it does, maybe because for me, getting the virus relates to love and sex and the thought of either one makes my stomach flop. I hope that changes, and soon.

I don’t even liked to be touched, a hug makes me cringe. Being in close proximity to someone makes me feel uncomfortable and anxious. This includes men and woman. My personal space has become paramount in my life. I like to allow sufficient enough space between myself and whoever is around me so I feel at ease.

I wasn’t like this before, just one more thing to add to this list of things that are no longer “normal” in my life since Lola came to live with me.

Some people may call it depression, I like to refer to it as “hibernation”. It’s such a kinder, gentler word.

You know, when you leave the house so rarely you can’t believe they put up a new stop sign on your main street? Yep, that really happened to me.

I was “off” work for four months. Well, let’s not get it twisted, I was fired for having HIV, but I can’t prove that.

I took care of business, grocery shopped, made sure Moe had food and litter and of course I always had cigarettes, but leaving the house was a major event. I showered, washed clothes but never put on make up and rarely did my hair.

I became completely and utterly addicted to my DVR. It became my surrogate man. I found myself trying to fast forward live television to no avail. But all of that ended when my cable got shut off. I was DEVESTATED! OMG! Not my precious DVR………..but yes, sadly it was gone, for two entire months. Who knew that if I connected my cable directly into my television that I would get “basic” cable???? Obviously not me. No, I dug out the good old fashioned rabbit ears and had a whopping 4 channels, none of which were remotely even close to my precious life-sustaining digital cable.

You’d think that would get my ass out of the house, but no. My house is my safe place. I know every inch of it, every noise, nuance and idiosyncrasy it has.

I thought maybe I should go on anti-depressants. I did the whole “snap out of bitch” thing, and that didn’t work. And the anger……….OY! Was I angry. It was subtle, but I could spew venom like nobody’s business. I could cut somebody down with a few words and make them feel like crap and walk away thinking I provided them with some insight. Yeah right.

The end result was I just pushed people away, which was the desired oucome, a pity party for one is much more satisfying.

I would make plans and then find excuses to cancel them. I would suddenly “not feel very good” or “not have any money” so as not to inflict myself on anyone. If I did manage to get out of the house, I was completely on edge the entire time. My skin would crawl with anticipation of going home. Home, the only place I wanted to be.

I lost social skills. I didn’t know how to interact with people anymore. Things that came to me naturally before suddenly seemed foreign. Being alone with a cat for four months will do that to a person.

Then I landed a job. I thought that would cure what ailed me not even realizing that there were PEOPLE there! People who I had to interact with, manage, talk to even. Suffice to say, my first week was a complete and utter BUST! I managed in two days to alienate my entire team, most of which wanted to “jump ship” because some raving bitch was now their manager.

So I regrouped. Well, not really, but I managed to keep the hibernation inside my head and not let it get out to the general public. A virtual “stepford wife in the corporate world.”

Then I come home and I am able to be me again, the agro, bitch on wheels who never wants to leave the house again.

I want my mommy. I want to lay my head in her lap and have her run her fingers through my hair like she did when I was a little girl. I want her to tell me that everything is going to be okay. Because when your mom tells you it will be okay, you somehow think it will be.

Do you remember getting sick at school and having to go to the nurses office? They always called your mom, and when they did, they always gave you the phone so you could talk to her. Just hearing her voice made you feel sicker, cry harder and at the same time, you knew she would somehow come and rescue you.

I’m the baby of five, and my mom had me fairly late in life. She was 38 years old when I was born and back in the day, that was unheard of. There are 11 years between the next sibling and I. When I was born, my mom was pretty much DONE with having kids and from what I’ve been told, my oldest sister pretty much raised me. I was like everyone’s little doll, blankets matched my dresses, never a hair out of place.

My mom has carried around a sense of guilt when it came to me. She blamed herself for me getting Diabetes, and took responsibility for every bad thing that ever happened to me.

She’s 80 years old and still works full time. She has a better social life than I have and is never home. She gets her hair, nails and toes done every two weeks without fail and is one of the most generous people I know. She is a real "pistol."

I’m abnormally connected to her. We have an "attachment" to each other that even my siblings recognize. She is IT for me, my rock, and my one constant. I’ve always said that if God forbid anything ever happened to her, you’d have to lock me up in a padded room with a valium drip. For real, no joke……………I’d be lost, done.

But I need her right now. I want to share my accomplishments and tell her my fears. I want to tell her I have HIV. I can’t. She would try and take the pain away and make it hers. She does that with everything. If I have a cold she worries can you imagine what would happen if she knew this? It's a mom thing, they just want to make it all better.

Sometimes when she is telling me stories about what my brothers and sisters are going through, and how hard their situations are, I want to shout through the phone ‘WHAT ABOUT ME? I HAVE HIV AND THAT IS SO MUCH BIGGER THEN WHAT THEY ARE GOING THROUGH!’ But it’s not a competition, and she doesn’t know, so instead I listen and bite my tongue.

She’ll never know. If I told her, it would kill her. And yes, I know what you are going to say, "you'd be surprised how strong people are." But I will most likely outlive her and I can’t put her through any more of “Lisa’s life drama” believe me, she’s had her fill.

It makes me sad that she will never know how brave I’ve been, how well I’ve handled everything and the things that I am accomplishing. She would be proud…………knowing that is a double edged sword. I still want my mommy.

I attend a support group for women infected with HIV. I found it very early into my diagnosis. It’s a group of roughly 8-10 women, all of which have been living with this virus for a very long time. When I came along, I was somewhat of a novelty. It had been over 10 years since they had a new member join the group.

The women are very “eclectic” and come from all walks of life. I remember sitting there the first time I went thinking “WOW! These women have paved the way for me to live a better life.”

They have gone through the entire laundry list of medications that were available, experienced every side effect associated with them as well. Most of them have a minimum of 20 years under their belt.

I’m not sure if you have realized this about me yet, but I’m kind of a force to be reckoned with. I have a strong personality, say what’s on my mind and I am VERY passionate about things that I believe in. This was a very new experience for the women in the support group. Most are fairly meek and mild and I found that over time, I could really control what was happening. That’s sounds awful I know, but they seem to hang on my every word, wait for my advice or ask for my opinion. I liked it.

I also found that I was more educated then the women there and felt the need to help them. By help I mean, teach them how to use the computer, put them on a budget, and get them a better job. Thing is, they didn’t want that from me.

There is one woman in my group named Doris. Doris always seemed sort of “off” to me. She is very nice, but I couldn’t pin point what exactly was wrong with her. I always reached out to her, I wanted to "fix" her.

We had a Christmas party in December and did not meet again until February. In February, when I saw Doris, I couldn’t believe my eyes. She had lost probably 30lbs, and wasn’t heavy to begin with. I was very concerned and during our meeting, I asked her if something was wrong. She had a hard time articulating in general, but that night it was even worse. Something was wrong.

When I got home that night, I called a couple of the other women from the group and said that we needed to help her. I was told that Doris had some things that she was doing that were not good, but it was her choice. All we could do was “be there for her.”

Two days later, Doris’s daughters found her on her couch and they could not get her to wake up. She was admitted into the hospital in a diabetic coma. Two days after that, Doris was pronounced “brain dead” and moved to a hospice to die. She had a DNR on her charts and they kept her comfortable on a morphine drip, but basically she was starved to death, until her body decided it was time.

Doris died on Wednesday, with her two daughters and son there by her side. I think that is what she wanted all along really. She always seemed so conflicted, things were always so hard for her.

I didn’t go to the hospital. I had vowed that I would do everything I could to stay out of hospitals this year, since I spent half of last year there. I didn’t feel bad about not going, in truth, I didn’t really know her well, other than seeing her every second and fourth Monday, that was it.

Doris didn’t die of any HIV related issues, which somehow is a relief to me. In fact, up until the day she passed, she remained undetectable with a tcell count of 300. No one can tell us why she did die, no rhyme or reason, she just lost the will to live I guess.

I’m not sad. I believe that Doris has finally found some relief, some peace. I think she is finally happy, free of all that encumbered her.

Rest in peace Doris.