Doubting Thomas July 25

Little did I know my partner, David and others, who KNEW it was time for a CHANGE in charities as we know them, launched The Open Your Heart Foundation. Entering uncharted waters driven by faith and the knowledge we managed to absorb while in Los Angeles, New York, Florida, and most importantly our close personal friends already in "THE AIDS FACTORY".

Never thinking, really, that either David or me would move from caregivers and providers to truly needy, we were next in line for our personal tour through "THE AIDS FACTORY." In less than two years, David moved from a catalyst in the delivery of care to someone in dire need of care and compassion, on a very long-term basis.

I soon followed suit and became ill. "THE AIDS FACTORY" officially certified both David and Thom. Two persons, one household, viewed as two households by society in dire need of care and compassion.

Soon our various enterprises failed lacking the close personal attention David and I once provided. The Foundation Open Your Heart would loose its battle with Goliath too small, both David's absent, not politically correct enough to survive without our "hand held sling shots."

If this sounds bitter I do not mean it to be, this is my reality. I am a 33 year old gay male, in America living with AIDS, lost in "the system." I know as I am writing this there are countless people that have fallen through the cracks, been put on hold, had food stamps declined, completing paperwork which never ends, and we all get the same "Pretty Red Tape Outfit"! Lost in the system for two years, now found, with a price: $TRESS!

My decision stated in the "What's New" folder describes the direction I want this website to move toward. Simply stated, as it was in the beginning. I do not want this to become Thom's manifesto or bitter babble. I need to voice my opinion about how painful it is when others just don't or can't begin to understand the fear, pain, confusion, and lack of compassion ever present. Without going through "THE AIDS FACTORY," you simply cannot fully understand. Frankly, I thought I did; however I did not.

(Soon to follow a full Survival Bible Update on my Health status, Medications, and Therapies.)

GOD revealed to me how important and fortunate good friends and family are when the "chips are really down." You may notice I put friends before family for as hard as it is to say I learned that my family is not as strong as I thought. I point no fingers at my family for their fears of the chance of loosing a son/brother to AIDS. I just pictured my time with AIDS if it was to come that it would be different. Family has contributed a huge part of the stress endured for David and I on BOTH sides of our families. The charities that David and I began to use two years ago came through for both of us. From HOPWA funds (Brett at CarePoint), R.A.I.N yard work, housework, etc.), medication assistance (Ian at CarePoint), to SSDI, DHS-ACIS ,(Jane), many doctors (Dr. P., Dr. L., Dr. W., Dr. S., and others).

I could go on and on. If you notice I mention a PERSON individually who out of the whole service provider / caseworkers encountered those are people that stand out. Compassion, understanding, and patience are of utmost importance to the person living with AIDS. When you have no income and you are at the mercy of the state to make decisions for your life you would think those involved might understand your fears. After many tears, arguments, and much stress you find those few angels that actually make it all happen.

Discovering our "Internet Angels" through the brilliance of the web and contacts made are all part of the "big picture." Without which neither David nor I could have dealt with the many fears and the unknown. Not wearing one's Heart on his or her sleeve or looking for affirmation for helping someone. Rather these people giving of themselves because they have a HEART and truly understand what GOD meant by Compassion for others. There was a time during my self-centered life that I felt the world revolved around Thom. Nevertheless, Tom knew that Thom Collins would someday be yesterday's news. I was not prepared for the rude awakening of having my Long Term survival and AIDS knowledge acquired over the years as a speaker and HIV / AIDS activist used against me in my own town.

The friends I mention and I do hope I get you all listed have helped humble me and at the same time understood my frustrations. Having a shoulder to cry on, scream at, laugh with has been the greatest gift of all. Friends I mention along this daily thought of mine. My Heart has always been present in all that I have done past and present but overshadowed in the later past. After writing my last installment "Doubting Thomas", FRIENDS and AIDS, I realized I was so caught up with CMC, and the staff on the video/picture/graphic part of the folder, I ended up burned out wanting to do another update about ANYTHING. I am making no apology to this affect but a statement to knowing my GOALS with what I want to share and how. Always to give thanks where it is due.

Today, I can not begin to tell you of what I have been through in my life since I was last able to type. From life's issues and self-created Thom-Drama, is a cross to bear! I am my own worst enemy. The neuropathy and joint pain (arthritic I am told) so terrible at times, I am asking my somewhat less than able bodied partner and friends to type for me. Good days coupled with the bad seem to make it worse. This up and down business adds to confusion for people trying to help. One day it is get out of my way I can do it all! The next day it is help me, help me! The inconsistency drives everyone involved crazy. People, this is not a patient non-compliant one day and compliant the next. It is what it is, up one and down the next! Forced again by "the system," (they, them, Big Brother), to obtain a referral to an "HIV/AIDS" doctor.

Recently so screwed by this same "system," I (me) made a "conscious decision" to wait until my Medicare becomes effective November 1st 2000. I am on a waiting list to see a doctor at the free clinic.

HALLELUIAH:

I have learned that my "Quest For SSDI" recently approved. However, to date I have not received any funds. This process may take weeks or months of more "red tape". However, all benefits terminated due to the "SSDI approval," food stamps, medical assistance, prescriptions, doctor visits, all gone!

Why? Because you have won the quest for benefits, not received, but the check is in the mail. Great! Is that what I tell the grocer, the pharmacist, the doctor, the electric company, and every other imaginable *suck-u-buss! Sometimes it is so bad you really do not know if you should laugh or cry! Good friends make it possible to laugh instead of crying.

I could not have done this without friends, including, Tonya, The Nobles, Steve, Chuck, David S, Richard, Alan, Blaine, Brett, Clergy, Ian, John, Ralph, Tom, and Dr. P. Jane, the retired AIDS (ACIS - DHS) caseworker from heaven, truly an Angel, still gives time (poor thing - we have her home phone), and everyone else. You know who you are, THANK YOU! From food baskets, Barbie, flowers, cards the list goes on. Just know that my life does sing with praise to JESUS CHRIST for not leaving David or I in the dark. You all are such true loving friends.

As for the charities to date: CarePoint for the help in medications, and HOPWA for shelter, R.A.I.N doing our yard and housework, RedRock for counseling and information on what is available. All of these charities are true godsends and I thank you as well.

I wanted to write something to you all to read to know just how hard it is to live without true friends and services living with AIDS. This fight is not over by any means. I despise the word fight but honestly that is the only word that fits. We have had to fight night and day to get paperwork, past histories; old bills, etc. just to show proof that we need help. From 8-5, every day there is some form, paperwork, phone call, ID number, etc. that becomes David and Tom's personal home health business.

I will not be able to get a CD-4 Count or Viral Load until later in September. I remain optimistic about these things and take them one day at a time. David had Geno Typing yesterday, I hope he will explain what he is going through in his folder called "The Other Side." I must say living in a two-person AIDS household is difficult. Certainly I can be witness to the affect on not only those living in the home, those close to the situation do not escape the experience, some good and some not so good.

Recently my doctor decided to discontinue weekly Cortisone injections. My doctor feels initiating some form of moderate exercise is wise, this I am looking forward too! No heavy lifting told to take it easy. Working out was always part of my health plan keeping the disease at bay. But now after almost one year of no gym, I hope to be able to do what I need to stay healthy, and not have the burden and pressure of working out to "Just be Pretty." Another goal set for me, to become more mobile before my joints get are not joints anymore!

While on the subject of what a person does living with AIDS and has such a drastic daily life change I explained my issues with years of being blessed at hearing so many stories through E-mail. I want to say for the record that I am not an ace a computer. Using a scale from 1 to 10, I am about a five. When I got online with AOL back in 1993 that was my introduction into being online. Little did I know my closest friendships would form by the click of a switch? Even with that said I just could not keep up with keeping in touch via E-mail. Therefore, I have now discovered that the computer is not just about being online and doing E-mail. God revealed to me the art of gaming. Before I was only creative while working on the website with Mike and Matt on my website?

Since I have taken a break from E-Mail I have gotten addicted to, a game called "The Sims." You can live vicariously through characters you create! Live your fantasy on your computer screen, lookout "Orwell" here we come! Check out this incredible game at www.thesims.com (plug-plug). I promise you will love this game! Another friend gave me a MIDI Keyboard in which I am learning by computer how to Play Piano, with the program Teach me Piano. The Doctor says it is good for my joints. I am no Mozart but it is rewarding. I make this a goal of mine as well for it helps my arthritis and memory. Yes, I also suffer from short-term memory loss, which really is tough to deal with. I think when I write for my site that is why I repeat myself as much as I do. I have noticed in the last year that I repeat myself often. Along with memory, I still suffer from extreme nausea, headaches, and low-grade fevers, joint pain, fatigue, lethargy, and hypertension, manic depression in which I am now taking Remeron.

One good friend talked to me about Remeron and my doctor agreed. If I can give any advice today to someone living with AIDS, do your research. Try to print up any treatment options that you may read about that can make your quality of life better. I have and my Doctors have been open for discussion.

It is your life only if you take responsibility and control. Learn from other's experience AIDS IS DEFINITELY NOT CURED! Gay men have tripled in exposure rates since 1997 and the World Aids conference has confirmed 31 million worldwide. If you, like some persons do, believe the Cocktail Therapy is a CURE, you could kill someone should love, yourself! David is on the cocktail therapies along with many of my other long term friends with undetectable Viral loads and mid 400-500 CD-4 Counts and are still getting very ill. They still have not figured out what paralyzed me last October. As I said earlier, you will get a Full Update on my Health in the Survival Bible coming soon.

LISTEN UP! PLEASE, DO NOT BE ANOTHER STATISTIC IT IS NOT FLATTERING.

I KNOW.

God Bless You All,

Thom Collins

* a word to describe creatures that suck you dry of all energy and resources - not sure if it a word or not?