Scylla and Charybdis
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Scylla and Charybdis
Image by KevinHutchins314
What am i going to do?
I’ve survived with HIV since i was nineteen years old, and now i’m almost forty-two. But i seem to have finally arrived at a situation which could bring about the end of these decades of good fortune.
Over the years i’ve had periods when i wasn’t on medication to treat the AIDS virus, but usually those times were fraught with co-infections. I’ve had Pneumocystis twice, and many other serious problems which were life-threatening to a person with an unhealthy immune system (rotavirus, food poisoning, viral conjunctivitis, cutaneous infections, etc). I was lucky, i survived each incident, and typically i have been able to find medications which help me to continue living as they combat the HIV and help my white blood cells to rebound, lowering the "viral load" while improving my count of helper T-cells. My viral load has often been "detectable" despite being "lowered", and this is troublesome for people with AIDS. My T-cell count has mostly stayed very low (between 100 and 150, which is about ninety percent below what i’d prefer) but i have always managed to survive. Co-infections still occur, but i’ve had medical help and thus have endured in this situation for more than half of my life so far. My entire "adult" life has been under these circumstances since 1989.
Autoimmune diseases are at the opposite end of the spectrum, so to speak, from my situation with AIDS. In people with autoimmune disease (which is usually hereditary) the body’s own immune cells malfunction and attack the body’s healthy cells by mistake. My mother has a severe case of Meniere’s Disease (autoimmune attack against the inner ear and other neurological tissue), her sister has Lupus (autoimmune attack against skin and joints and other tissue), and other members of our family have our various quirks of immunology, particularly drug-allergies.
In most people, these autoimmune problems are burdensome but not fatal. There are usually no treatments which do much good for people with Lupus or Meniere’s, and often the best that can be attempted is to utilize certain steroids and other immuno-suppressive techniques to control the body’s malfunctions. The inflamations, attacks on joints and skin and other tissues, migraines, and some of the symptoms of autoimmune malfunction can be slightly alleviated, but the method of alleviation almost always involves lowering the body’s immune-system activities.
Some people with autoimmune malfunctions find they are seriously aggravated by certain triggers. There are many types of triggers, but severe reactions to medications are among the most common, especially reactions to various antibiotics and anti-microbials.
Over the past decade (or more!) i have gradually found my autoimmune malfunctions (presumably inherited) become increasingly terrible. Then during the past year and a half, everything has worsened until now it feels like i’ve "gone over the cliff".
I tried to take a combination of HIV medicines for most of last year, but they triggered so much auto-immune malfunction, i just about died. My hair fell out (and the ugly bald patches are still continuing to spread), my neurology showed signs of damage, my joints and ligaments have become sites for burning pain as my own immune cells attack me and give me symptoms of arthritis, all-over body itching which makes me feel like i’m on fire, rashes and hives, itching which goes down my ears and into my throat, nose, eyes, and worries me when my larynx is involved. (Anaphylaxis, anybody?) I could list all the other painful and irritating problems, but it would involve a catalogue of nearly every part of my body, and probably some gruesome photos of how my skin, joints, various subcutaneous tissues, follicles, and other places are all inflamed and deforming from this disastrous mess.
I discontinued that combination of medications, then tried some other HIV drugs during the first couple months of this year. It quickly turned into the same mess: as the drugs blocked the HIV and my own immune system slowly "recovered" and underwent cellular multiplication, the flare-ups drastically increased. I thought i was going to die from the pains in my chest and shoulders and head and everywhere else. I believed i would rather die than have to endure the continuous torture of the sensation of having all my skin "on fire" with massive itchy rash flare-ups.
I discontinued that next combination of medications, then tried to go back on an older combination which had been successful for me a few years ago. It was a "weaker" combination, but hopefully better than nothing, because my immune system is in dire shape from the twenty-three years with AIDS. Unfortunately, within less than a week, even the "weaker" drugs were triggering the autoimmune malfunction. Head on fire, body burning up, i told my doctors i had to stop those medications, too.
So now what? Every time i take a "successful" medication against HIV, it helps my immune system to "rebuild", but the "strengthened" immune system then always incorrectly attacks parts of my own body. And really, i am not a wimp, i could tolerate some hair-loss, some itching, some discomfort, some soreness, whatever… But i can not tolerate the sensation of being perpetually tortured twenty-four hours per day when i take the HIV medications.
What am i going to do?
My doctors are doing their best. In addition to my usual general practitioner and my infectious disease specialist, i’ve also had help from dermatologists, respiratory therapists, pharmacists, and so many other categories of experts. But we are stumped now. I’m going to see a Rheumatologist next month. Maybe he will be able to suggest a treatment for the autoimmune flare-ups, and then maybe that would allow me to tolerate some HIV medications again. But the problem is: treatment for autoimmune flare-ups usually involves giving people immunosuppressive steroids and other drugs, which would be a terrible thing in my situation with AIDS.
One of my doctors said this was like "the dragon is chasing its own tail!" For decades i have been in situations where i needed some drugs to fix an HIV-related problem, then more drugs to fix the problems created by the side-effects of the first drugs, then more drugs to fix the problems created by the side-effects of the fixer drugs, then more drugs to… … well, you get the idea.
It worked. It worked for years. It worked for decades. But now it’s not working.
I don’t like HIV medications but i want to take them so they can help me stay alive.
I don’t want to forgo HIV medications, but when i take them they trigger my autoimmune malfunctions so severly, it makes me wish i were dead rather than endure the torture.
Between Scylla and Charybdis, apparently i must make some kind of choice.
For the moment i can’t do much of anything, but i’ll see what sort of ideas the Rheumatologist might have next month. Meanwhile, i’m trying to ignore all the unpleasant symptoms as best i can (which isn’t very well) and i’m just hoping to enjoy the remainder of my life peacefully and quietly here with Tony. I was somewhat anxious and sad when i thought about how my life was likely to be cut short by AIDS and medical complications; but i’m happy to have enjoyed a couple of decades of adulthood despite disease. I’m happy to be retired here with Tony, free from most of what’s going on in the world. But when the autoimmune symptoms are at their worst, when the pains and aggravations torture me with burning sensations in my skull, shoulders, feet, wrists, and ankles, when the itching and aching makes me wish i were dead, then i just don’t feel the same anxiety and sadness. Instead, i start to feel almost relieved, because death will spare me any more of this fucking torture.
Oh well. Most people with AIDS never would have lived this long in the first place. To survive since the late 1980s with HIV and somehow still be managing to live in 2012, i’ve been so fortunate. I’ve had a good life for a person who’s been infected since the age of nineteen. I’ve had all these years of retirement with Tony. I’ve had a good time, despite what an awful place this world is, despite what an awful species humans are, so i guess it would be rather ungrateful to complain about the ending of it. Maybe the ending will be such a relief from the travails of illness, i might even be glad to just get it over with.
Scylla and Charybdis: monsters of horror, or angels of deliverance?
If something good were happening in our local area of the universe, i would be disappointed to die and miss out on the goodness. But we aren’t doing anything good. We aren’t exploring other star systems, we aren’t contacting alien intelligence, we aren’t even really advancing science much (except by accident, now and then.) Instead, we have a planet of poisonous retarded monkey-creatures who are violent, xenophobic, oppressively assimilationist, militantly anti-intelligent, and keen to destroy anybody who differs. So if i die soon because of something like AIDS, i won’t be missing out on anything important. I’ll be mercifully freed from this retarded-poison-monkey-planet. It’s too bad if i can’t go on enjoying my quiet comfort with Tony, but at least i will no longer be a prisoner of this world full of stupid primates.
My favorite daydreams lately often include scenes similar to the beginning of "The Hitchhiker’s Guide to the Galaxy". A passing spaceship miraculously rescues a couple of (very undeserving) creatures from the retarded-poison-monkey-planet, and they find an interesting life far removed from the stupidity of this world to which we’re accustomed.
Beam me up, Aliens! I’m ready to go!
Delaware jockeys support nutrition education program
Image by agriculturede
Delaware jockeys are continuing their support of a nutrition program to help improve jockey health and safety on the state’s racetracks with a donation. The Delaware Jockeys Health and Welfare Fund presented ,000 to the University of Delaware Cooperative Extension on June 20 to continue an initiative begun in 2009 to improve jockey nutrition.
From left, Luis Diaz, Sean Jones, Gregorio Rivera, Esteban Unsihuay, Oliver Castillo, Victor Rodriguez, Michael McCarthy, Eric Jones, Alex Cintron, Abel Castellano, Stacy Glass, Professor Sue Snider, Ed Stegemeier, Robert Colton, Pete Lizarzaburu.
With jockeys facing strict weight limits to participate in races and not impede their horses, many riders can develop eating disorders or practice other unhealthy behaviors to get their weight down before races. Such practices can hinder their riding abilities and safety on the horse, said John F. Wayne, executive director of the Delaware Thoroughbred Racing Commission.
“This program helps educate jockeys about the risks to their health and the health of their horses,” Wayne said. “Healthy riders are safer riders, and we all want races to be safe.”
The donation made Wednesday will provide new jockeys with information to make healthy choices in their daily diets. The nutrition education effort was launched in 2009 with a study by the University of Delaware Cooperative Extension and a collaboration with the Delaware Jockey Health and Welfare Benefit Board and the Delaware Thoroughbred Horsemen’s Association. An advisory committee of current and former jockeys was appointed to help meet riders’ needs.
"I am not aware of any other nutrition education program in the U.S. for jockeys,” said Dr. Sue Snider, a professor and food safety and nutrition specialist with the University of Delaware. “During the program offered by UD Cooperative Extension, jockeys are encouraged to eat small amounts of food throughout the day, especially in the morning. Based on our original survey, the average jockey consumes around 1,000 calories a day. The program focuses on getting the most nutrients for the fewest calories."
Dr. Michelle Rodgers, associate dean and director of UD Cooperative Extension, said: "Helping individuals apply nutrition concepts to meet their diet and health needs has been a long standing component of Extension programming. However, this is a new audience with some specific needs for us to work with."
The Delaware Jockeys Health and Welfare Benefit Board oversees management of a 0,000 fund each year, offsetting health and welfare costs for participating riders. Half of the money comes from track video lottery funds and half from the Horsemen’s Purse Account. Delaware Park also has a million on-track injury policy in force, covering riders injured during racing, and has the option to accept an additional million on-track policy for per mount, with the other portion of the premium covered by the Jockeys Health and Welfare Fund.
Boston Market
Image by theotherway
Good food! My plate is on the left with the healthier choices…but I did steal a macaroni!
