This is only a quick outline of my PML

My second entry to this BLOG is to introduce myself to give you all an idea of me and what the PML did to me.

I am not going to preach or expect sympathy or praise; or even have anyone applaud my actions. I just thought a condensed version would give some insight to me and on various opinions I have and why. I hope I do not piss anyone off with my many opinions but that is inevitable.

I tend to write simply and usually write off the cuff sometimes not thinking of any repercussions. :-) I promise to be careful.

I have a heart as big as Texas to coin a popular phrase and can listen to friends (new and old) for hours if needed so they can empty their burdens and ask for help.

As I go along, I hope to elaborate on some of the tid-bits in the future to help you further understand me. So, how did I get here and to be fifty years-old to boot!

I was overweight as a child until I turned fifteen. I weighed 220 pounds with a forty-two inch waist with long hair by the age of fourteen. I had had enough, so dieted and exercised to 165 pounds and a thirty inch waist and cut my hair by the time I began my sophomore year in high school. Tah dah! New me!! And, I got to celebrate my fifteenth birthday like it was my first.

So, over the years between fifteen and up through forty, I had a very good time and became successful in business. I think being overweight, I tended to be more empathetic to many issues. Though, I did learn to be a self-centered bitch when I realized how people responded positively to my new facade - lost weight, more muscular, better groomed and a bit more outgoing too when I came out at nineteen. I played the field A LOT since then - silly, silly boy. I should have known better in the 80s when AIDS started, but I thought I was invincible! From 1989 until I got the PML in 1999, I did manage to find three lovers over that time period. All Latin American: Brazil, Puerto Rico and Venezuela. I had this thing for dark hair and facial hair! And, EYES - all very pretty: brown, hazel and green, respectively

Before getting ill, I was the president of a Children's Accessory company. I had worked my way up through account executive (sales), merchandiser and vice president to president. Previous to that, I had been in retail � from a manager for the Men's department working up to a buyer in Children's outside of Philadelphia for 5 years; then connected to my NYC beginnings from there. I lived and worked out of NYC for 12 years and loved living in Manhattan and enjoyed my job. As president, I worked directly with major accounts like Walmart, Target, JC Penney, Sears, Kohl's, Mervyn's, etc. I was always present for any major account like Macy's or Kids R Us. I got to travel (which I loved) extensively across the US - favorite cities: San Francisco, Dallas, Minneapolis, San Antonio and Chicago. I liked others like Atlanta, Miami, Tampa, Little Rock, Oklahoma City, Seattle, Milwaukee, Charlotte and Los Angeles too, to name a few more. The corporation (4 divisions: I was in charge of one) was into licensing products like backpacks and such - heavily. I also got to visit headquarters like Warner Brothers, Nickelodeon and Marvel Comics.

I was diagnosed with PML in November 1999 and should have died in 3 to 7 months. PML (Progressive Multifocal Leukoencephalopathy) is caused by a virus that attacks the brain leaving the person with severe stroke-like symptoms and is fatal 90% of the time. The virus that causes PML is released to do its job because of the debilitating effect of AIDS on the immune system. About 2% to 10% of AIDS patients get PML and of those only about 10% survive. In November 1999, my T-cells were 10 and the VL 200,000+. I could only guess that I may have been infected around 1991 with HIV and then developed PML in November 1999.

So, what did PML do to me? By February 2000, I lost my balance, coordination and fluid speech. I could not write or draw. Perform my daily chores like personal hygiene, cleaning and cooking. I no longer could sit up to eat. I rarely got out of bed because sitting up hurt me and I lacked any enthusiasm for anything of consequence. I never walked by then and my arms and hands lacked the control for any meaningful task. I was not able to work anymore.

Side note:

I was involved very much with my third lover by the time I got sick. He was very good to me when it all began to happen. He was my primary caregiver from November 1999 until I returned to Northeast Pennsylvania in February 2000. He and my family butted heads on my care. He left me two weeks after we had returned to my family in Pennsylvania. I am not sure if my family exasperated him or if he thought I was dying or if both made him run back to NYC and the back home to Venezuela. That has been ten years since. We did reconnect again in September 2003 briefly. But, he never showed on a scheduled trip to my home in January 2004. C'est la vie! I told him never to bother me again - lose my address, rip up my number and pretend I did die in 2000!

BUT, in December 2006, he initiated contact by telephoning me. He was back in NYC (a three hour car ride from here). I agreed to a visit which was cordial and platonic which was followed by numerous phone calls by both of us trying to catch up on each other’s lives and re-learning about one another. To make a long story short – we did not mesh as we did eleven years ago, and we never talked again after April of 2007.

That saga is a whole other wordy story which may be addressed in the future.

Many of my friends from this area have been friends of mine between fifteen and thirty years. Those from NYC or Philadelphia have been friends for between eight or fifteen years. Some are gay and some are straight, from all walks of life and from various geographies - I enjoy talking to everyone. Meeting new people during my travels expanded my circle of friends even further. I am very loyal to my friends. I love listening, joking and conversing, but most of all just being there. I have not lost any friends due to my status; in fact, some are even closer now and most are the straight ones!

After months of taking HIV medications, I finally began to improve since my PML was related to my HIV. My sister and a lawyer friend helped me sign-up for disability to help with my expenses. And as I continued to improve and get my oomph back over the first two years, I spend my days exercising, doing various therapies and enjoying my hobbies like art and writing again. Having a career as I did was not a viable option. Between all these new and required activities, I do my cooking and cleaning. I have learned to do so many things from my motorized wheelchair and my days are productive to me. I have learned to be patient and do things a bit slower since first attempting tasks and rely on my imagination more, but I manage 95% of my daily needs now.

I think it is funny, because now since I cannot work, I am able to enjoy time for my hobbies and writing. I miss my work and my life in NYC back in 1999 though even still. I have my daily schedule that keeps me exercising, doing therapies and chores or allowing me free time for my hobbies from 6 a.m. to 11 p.m. Many of the exercises and therapies I have developed myself over the past seven years like doing handwriting practice and reading aloud every day.

I even drive again now. It took me seven years to overcome any obstacles before I got my driver’s license back and could safely drive. I cannot imagine going back to a parasitic-type of existence pre-vehicle after becoming so independent when I got my converted mini-van.

But, I have my independence tempered a bit in my home life. I do live with a sister and her husband in a two- bedroom trailer on her property in a rural setting - lots of lawn, mountain and solitude. For now – they are building a new house behind this trailer in a matter of months. The property used to be part of my mother's land before she divvied it up into thirds - my sister, my youngest brother and herself. I grew up here, so our ties are deep. My sister and her husband own their own freight truck, so they lease freight through a large freight company and crisscross the country. They are away for three to four weeks at a time, and then home for four or five days before off again!

I have the place to myself, except for their two dogs. I baby sit their two ninety-pound white shepherds (which I adore). They are my company and protectors. I never get bored with those two dogs – playing with them and even brushing them!

I have a large family too! My mother lives two doors from me in the original home and my father just recently died in May 2009. They had been divorced thirty-five years, but had remained cordial. I have three brothers, one half-brother and four sisters. I am number four of the nine. We range in age from sixty-one to thirty-five. We are close, but not overly affectionate.

I think I am a very spiritual guy. I use my Catholic upbringing as a basis for all my prayers. Every day I say my prayers and rosary without fail. I do believe in God very much and know I am a good person. So, my only judge will be God and not some pope or preacher. I am comfortable and have merged very well my sexuality and spirituality.

I enjoy listening to music of almost all genres. I do like the old 60s, 70s and 80s music and classic disco the most. I also listen to country, classic rock, pop, salsa, polka - everything I guess, but rap and opera.

I enjoy my hobbies which are usually artistic like painting, drawing and decorating. Does that include writing too?!

I am not really into collections, but I do save cowboy hats (have eight so far; different colors and styles) and crosses/ crucifixes (seven so far)

I tend to have very strong opinions about everything and LOVE to talk or write about everything too. I try not to ramble, but I am good at expounding my beliefs no matter my opinion. I like to think of myself as determined and through all this stuff and BS, a much better human being. I always try to keep upbeat and help where I can, but every once in a while, I miss my life before AIDS and the PML and being in love - a tragedy, huh? I have been a lot more outgoing and daring lately; in hope that my life has some meaning and will affect someone else too, even though I am HIV positive and in a wheelchair. There are so many facets to me and my personality, what pisses me off and what makes me laugh - I hope to convey some of these to you all and look for your comments.

One of my own therapies was typing and using the computer. I started out writing e-mails to friends which led me to even more writing and surfing the Internet as my fingers regained their proficiency. As my fingers increased their agility, I turned to writing an entire book and hope to keep following this initial endeavor with more. This will be my new career.

Ron

P.S. My t-cells are 696 (Highest were 798 in October 2008 - so they are pretty stable for now remaining between 650 and 798 for the past year) and VL undetectable (has been for eight years)