Here's my story:
I tested positive for HIV back in July of 1997 when I was 29 years old. The treatment options were nothing like they are today and while the survival rate had greatly improved, people were still dying. I chose to participate in a drug trial study that at the time, I thought would help me and in a way, help others.
I could not have been more wrong.
Back then I was healthy- I exercised, was active and only got tested because I was in a new relationship. I was not and had not been experiencing any symptoms of HIV. However, it wasn’t long after starting treatment that the side effects started. Early on, they were minor and mimicked common symptoms of common ailments that could be managed with over the counter medications. Then I started having problems with my feet that I had never before encountered. Turns out, the medications had caused peripheral neuropathy in my feet.
The people who ran the study referred me to another study that was testing a peripheral neuropathy cream. This one was double-blind. This meant neither I or the doctor knew if I was actually getting the cream or a placebo. It was either the placebo or ineffective medicine as it did not work. After about 6 months of constant foot pain, I just couldn’t take it so I dropped out of the study. Slowly, over a period of a few years, the numbness subsided and my feet felt normal again.
Flash forward 20 years and my viral load is still undetectable, which is great, however, my *CD4 or t-cell count is not so great. For the last few years, it has declined and is now the lowest it has ever been. The average t-cell count ranges from [phone redacted] and mine has been in the low 200’s for a while. This means my immune system has been damaged and is in trouble. It’s most likely that it will continue to fall and when it falls below 200, I will officially be diagnosed with AIDS.
Over the last two years, I have been sick more than usual. It takes weeks for cuts and scrapes to heal and the neuropathy that I thought was gone is now back and slowly worsening. There are some mornings I get out of bed and have to walk on the sides of my feet until the pain subsides to a manageable level. I cannot sit on the floor cross legged nor can I cross my legs sitting in a chair. Both cause the pain to intensify pretty quickly.
Then, a year or so ago I also had my first gout flare-up. I woke up one morning with a shooting pain in my big toe on my right foot. I didn’t remember stubbing my toe, but I just thought I had done it in my sleep. Then, after telling a friend about it, he said he thought it sounded like I had gout. I had never heard of gout and so I googled it and sure enough, sudden intense pain and swelling of the big toe is a symptom of gout. My doctor confirmed the diagnosis and prescribed me a wonder pill! Just a day after I first took the pill, my toe was much, much better. He gave me a huge bottle of the pills and in time I understood why. I’ve had flare-ups on a fairly regular basis ever since to the point of losing the toenail on my big toe from the constant swelling.
I was lucky that during this time as my health issues worsened, I was allowed to work from home more and more often. I loved my job and my boss and I was making more money than I had ever made. Then, out of the blue, the owners of our company laid off 32 of 55 employees, including the entire finance dept from the CFO down. I was the Senior Accountant in the Finance department. The way in which we were laid off was unbelievable: after returning from vacation the owners sent out a company wide email that stated drastic staff changes were coming and to check our email at 6pm (mind you the email was sent at 3pm). If you get an email, you are laid off. Nice huh? The CFO, Controller nor the Head of HR were notified prior to the email being sent. All were let go, effective immediately.
I knew that getting another office job wasn’t a safe option for me as I was becoming more and more susceptible to opportunistic infections. Being in an enclosed space for 8 hours a day with a large group of people could be fatal for me. I sought advice as to my options and the main consensus was social security disability. However, I decided that instead of going on disability, I would try and start a home business. I had planned to use the money from the equity loan to remodel my house and a chunk was already paid for the work being done on the outside. I lived on the rest as I tried to get my business up and running. I have tried for over 18 months to make it work and I just wasn’t successful. I have now gone through my savings as well as maxing out all my credit cards.
In September of this year, I decided to file for disability, not realizing that I was about to enter into the next act in this horror story that is my life. I have been denied disability twice. My low CD4 count was never mentioned or addressed in either of their denial letters, even though I wrote them a detailed statement about it in my first appeal. The system is more flawed than I ever could have imagined. Some people honestly believe they intentionally make the process difficult in order to dissuade people from continuing with their claim, and I am very much finding this the be true.
There is a 6-month waiting period and it takes about a year to get benefits. I just don’t understand how they expect people who can’t work to pay their bills for a year with no income. Social Security supposedly gives you back pay, less the 6 months waiting period, in one lump sum. My mortgage company won’t wait a year for their money and don’t think my credit cards or utilities will either.
You can make up to $1,000 a month while on disability so I am hoping you can work part time while your case works its way through the system. Having a full-time job basically negates your eligibility for social security disability, so I am looking for a part-time job. However, I might not have a choice but to get full time work, despite the risks. I have started selling anything of value on platforms like OfferUp and Letitgo, but it’s just not enough. A friend recently suggested I look into gofundme. There was no way I was going to put my personal business out on the internet so I can beg people for money!? No way. No sir. Not me!
Never say never.
I have reached that desperation point. I am not going to try and get an amount to cover all my bills for a year or anything close, nor am I trying to strike it rich. I just need help getting my mortgage caught up because I just can’t lose my house.
See, what I don't think everyone understans is that you can't live without an immune system and mine is giving out. Doctor said I have 3 years at most.
I have lived here for 14 years and all I really want is to be able to live out the rest of my life in the home I've created.. I have until Jan 9th to somehow beg, steal or borrow $4,800 or else they will start foreclosure proceedings.. That’s a lot and I know I will never get that much, but I just have nothing to lose by trying, right?
Buying a print off my website https://www.posborneprints.com/ would be another way to help me or just recommending my site to someone you know who might be looking for new art.
This is so not easy for me and I am deeply humiliated by all of it, but at the same time I am terrified of having to die a slow painful death on the street or in a homeless shelter. I’ve tried to be a good person and friend, but maybe this is the universe’s way of telling me I should have tried harder. I’m not sure I’m even worthy of any help, but I need it, and am asking.
I want to thank you for anything you may be able to help me with. . Your kindness will not be taken for granted or forgotten.
From the bottom of my heart,
* From WebMD: The CD4 count is a test that measures how many CD4 cells you have in your blood. These are a type of white blood cell, called T-cells, that move throughout your body to find and destroy bacteria, viruses, and other invading germs.
HIV damages your immune system because it targets CD4 cells. The virus grabs on to the surface of a cell, gets inside, and becomes a part of it. As an infected CD4 cell multiplies so it can do its job, it also makes more copies of HIV.
Those new bits of virus find and take over more CD4 cells, and the cycle continues. This leads to fewer and fewer HIV-free, working CD4 cells.
HIV can destroy entire "families" of CD4 cells, and then the germs these cells fight have easy access to your body. The resulting illnesses are called opportunistic infections because they take advantage of your body's lack of defense.
A normal CD4 count is from 500 to 1,400 cells per cubic millimeter of blood. CD4 counts decrease over time in persons who are not receiving antiretroviral therapy. At levels below 200 cells per cubic millimeter, patients become susceptible to a wide variety of opportunistic infections, many of which can be fatal.
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