Archive for Oral Hairy Leukoplakia

Taking the First Step

September 13, 2007 · Filed under Healing, Mental Health, Oral Hairy Leukoplakia, Retaining Sanity, Status Update, Symptoms, Where I Am

Yesterday after just over a year of self-doubt and internalizing my fears, I took the first step to healing myself. I searched on the Internet and called up and talked to a counselor. This was a huge step for me as I have always been in control of my body and my health and for me to call up someone else was admitting that I needed help. Even if it was just talking about my fears, it was a big relief for me to be able to finally come to terms with what had happened to to be able to talk to someone without judgment. It was like all this emotion had been building up inside a dam the entire time, and for the first time, a little gate was able to be open and the waters that pushed through were overwhelming.

Laura seemed to understand where I was coming from. I can’t thank her enough for her listening and emphasizing did more for me in five minutes than an entire year of fear and self-loathing.

The thing is, I don’t loathe myself, I love myself, but for that one mistake I did, I put everything in risk and I sit here and wonder what happened to my second chance. Doesn’t everybody get a second chance?

These days, I’ve taken to removing physically the white patches on the side of my tongue to the point where if I was an objective person and was looking at myself through the eyes of another, I would be inclined to suggest it is self-mutilation.

When there are no symptoms, I can walk around all day and forget about HIV. It is when the symptoms appear again that I find myself inside a vicious cycle of fear, irrationality and hatred.

I think if I count the number of times I run to the mirror each day just to look at my tongue to see whether the signs of oral hairy leukoplakia have arrived, you’d all be shocked.

And the thing is, I hate what this fear has done to me. I’m not this person and I don’t want to be this person. I feel like I’ve lost a big part of me to be happy and carefree, and I hate that I am sitting here writing about this. I feel like such a coward.

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Trying to Stay Sane

August 27, 2007 · Filed under Dry Mouth, Frictional Keratosis, Mental Health, Oral Hairy Leukoplakia, Symptoms

The more I look at my tongue, the more convinced I am that I have oral hairy leukoplakia. There is general whitening and it looks like it is getting thicker. For Christ’s sake, last night I was using tweezers and a small clippers to cut away a white patch on the right lateral side of my tongue.

I think I have a tongue thrusting problem though which could mean a diagnosis of frictional keratosis as I notice their a teeth marks from the tongue pushing against my upper teeth at night. I also sometimes bite my tongue while sleeping. My tongue also looks generally whiter when I wake up so it could mean maybe I have dry mouth? Who knows if all these symptoms are new or that I’ve always had them but only noticing it now because I’ve been looking closely at my tongue.

I’m trying to retain some sense of normality, and I hate that I have to keep worrying about this, but I’m scared. I just want to be normal again.

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One Year After My First and Only Exposure

August 24, 2007 · Filed under Anal Sex, Conflicting Information, Mental Health, Oral Hairy Leukoplakia, Oral Sex, Where I Am

It is approximately one year from my first and only exposure to HIV. My first sexual partner turned out to be HIV positive and I discovered it after he told me after sleeping with him numerous times. Luckily, sans oral sex (receptive and insertive), we always used a condom (he was the insertive partner, I was the receptive). After this, I was always the receptive partner in oral sex, and we continued to use a condom for anal sex.

Despite the continued odds greatly being in my favor that I did not contract HIV, I still can’t shake the feeling that I’m possibly once of those “lucky” few who did.  My symptoms won’t go away, and it is making my life a living hell, despite who far I’ve come in the one year. Last year, I was in a very dark place, and I was scared. I’m still scared, but I’ve come one step closer to being the guy I was before my whole encounter with HIV. These days, I try to reason with myself that I can’t have HIV because I have hot hair. It’s a terrible virus and no one deserves to be burdened with such a virus.

One half of my is optimistic that I was protected and that the odds are greatly in my favor. There is no possible way I could be a virally enhanced being. The other half of my has resigned itself to the fact that I am HIV positive and is taking precautionary measures so when I do finally work up enough courage to walk into a center and ask for a test, I will have had enough time to have mentally prepared myself so I can accept the news.

Today, I looked at my tongue and it looks more white than I remember. I’ve even resorted to using tweezers to physically remove the white parts so my tongue doesn’t have them anymore; so much that my tongue started bleeding. The information on the internet is conflicting. Signs of oral hairy leukoplakia are a sign of later stage disease. It is something that occurs after the initial 4 – 5 years afters after the infection and asymptomatic phases (my first and only possible route of transmission occurred exactly one year ago today). Despite this, I keep checking my tongue.

I hate that I’m not myself due to all this worry and yet, I’m too afraid to get tested. I feel like such a coward.

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Current Symptoms Update

August 24, 2007 · Filed under Dry Mouth, Genital Warts, Oral Hairy Leukoplakia, Status Update, Symptoms

Tongue

  • Past five months, noticed general whitening on the lateral borders of tongue.
  • Fears that it is a sign of developing OHL.
  • Today looked at tongue in sunlight and noticed that white covers a large portion of front half of tongue side but this can only be seen in direct sunlight.
  • Right side of tongue has thin horizontal line travelling the middle of the tongue side. Thicker white patches.
  • ‘Freaked’ that this could be OHL.
  • Tongue top quasi hairy but this is normal.
  • Will try not to worry about it too much and watch it carefully over the next few months to see if it develops although admittedly, I am very concerned about it.

Dry mouth

  • Past week mouth (generally tongue) has been extremely dry.
  • Generally dry but noticeable when I speak for a while.
  • Tends to not feel dry after eating certain foods for example, eggs cooked in olive oil.
  • Today and yesterday has seen the symptoms gradually disappear.
  • Home remedies such as chewing sugar free gum to help ease symptoms and drinking plenty of water.

Rash on left thigh

  • Rash on leg that noticed for the first time end last year. Went away after applying body butter on it after two weeks.
  • Reappeared four weeks ago when I had jock rash near genital region. Ointment applied to both genital region and rash. Genital region disappeared after two weeks. Rash still there.
  • Now apply Cortizone (a steroid topical cream) for the past 6 days and have been noticeable signs of improvement.
  • Continue applying Cortizone and hopefully it will all clear.

HPV

  • Warts on tip of penis gone. Exterior anal gone. Inside ones now being treated. Taking a week break applying Cortizone to help heal the skin so it doesn’t tear (a result of Aldara) before trying the alternative wart treatment as Aldara, despite getting a good immune response has been used for months now.
  • Starting the new treatment tomorrow.

General things I’m doing to look after my health
Taking a daily multivitamin and fish oil supplements.
Strength workouts three times a week.
Outdoor sports once a week.
Making sure I eat the right foods and drink plenty of water.
Taking whey protein shakes with milk twice a day on workout days.
Trying to ensure I get to sleep at 10:30 PM every night.
Looking after general wellbeing and staying positive.

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