In 2012 I began treatment for an HIV infection. At the same time I was diagnosed with AIDS encephalopathy. This syndrome atrophied parts of my brain, across the brain’s structure. The immediate and obvious “symptom” was that I could not walk.

This effect was what my doctors were aware of when I was hospitalized. After I was released it soon became apparent (to me at least) that the encephalopathy damaged much more.

Thus began my 42-month search for answers, for diagnoses, even for a doctor to at least discuss the situation. Only recently, through my med bill and bare tenacity, I have finally made progress.

This series of posts, four in all, will highlight this work. I hope it passes lessons on the necessity to be proactive in managing one’s health care. This is one of the most important lessons I have to offer.


It’s been a weird couple of months.

On March 17 I maxed out my insurance’s out of pocket limit. I’ve turned the rest of the year into a healthcare orgy, all on Optima’s dime. Problems I have sweated since Day 1 have finally been addressed. For some the jury is out - for one far out - on the question of effectiveness. Still I have finally established working relationships with physicians who seem sincerely interested in me as a person rather than a file on their desks.

The first to go was digestive. I seem to recall believing I had a hernia even before my fall in 2012. Early this year it became obvious. The swelling swelled and it brought pain along for the ride.

I booked a trip to see my amazing GP, Dr. Banks (his first name). We go back more than 15 years and he knows me inside and out. Banks poked me after I demurely lowered my boxers. He told me flat out without touching me that my bowel had misbehaved.

I left with a referral to a surgeon, Dr. Brennan. He is a man built like an underweight drill sergeant and is pleasant to observe.

I dropped trou for him and he felt me up on the right and offered “Yup” as comment. Then he waved his hand over the left and said, “You have one here too.”

Oops I did it again. Ever since the virus gave birth to me I have displayed a unique ability to turn every complaint into a four-alarm fire. Double hernia. Par for the course.

The funny thing is that while I was being groped Angelo (my huz) was scheduled for his own hernia surgery. We started filming our new reality show, HerniaPalooza, that week.

I was scheduled for surgery a week after “the love of my life.” His recovery was bad from the start and six months later still causes him pain.  I didn’t know that then and I faced my two-way probe bravely and rebounded quickly with a one-inch scar tantalizingly close to my navel.

Dad was alive then and needed to be moved in and out of his bed. Our aid Keiara and I split the duty. In the second week post-surgery I felt a spasm of pain when I transferred Dad. I knew immediately I had blown out Lefty. I was pissed of course but I had to do for Dad.

I let it ride for a while but the pain got worse - much worse at times. I visited Brennan again and we agreed a second round was necessary. This time the surgery would be good old fashioned “open” surgery. All went well it seemed and this time I collected a larger souvenir. I now have a sexy two and a half inch slice in my groin.

I felt great - no pain at all for five days but then things changed. Twinges led shortly to knee-buckling hits. I have shown I have a high tolerance for pain but this was too much. The Perc didn’t do shit.

Back to Brennan who called in a scrip for morphine. I was in the big leagues and after 2 days the pain was gone.

That’s where I stand with Round One of my free-range medical bonanza. In the next posts you’ll read about a disease which is actually fun and I will get down and dirty with the real bad guys. These two are  problems I’ve faced from the start and finally I’m gaining traction against them.

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