HIV adds a layer of complication to many things...like other health issues. There are new rules about ... everything. And learning the rules is a slow process.
I have had back problems all of my life. The nuns attributed it to my bad posture. My therapist attributed it to a childhood trauma (most likely inflicted by the nuns...). My father attributed it to “badness.” My mother attributed it to my father’s poor gene pool. There are undoubtedly other ways to speculate about the origin of my back pain, but all I was ever sure of, was that it always hurt like a sonovabitch,
Through the years, I tried everything: Physical therapy, sports medicine, ice followed by heat, massage, acupuncture, apple martinis, energy work, swimming, hydro-therapy, muscle relaxants, back braces, posture-pedic mattresses, and Medrol Oral Pac (a corticosteroid hormone). It got extremely bad last summer, and I resorted to corticosteroid shots directly into my spine -- a sweet mixture of extreme agony, followed by bliss.
I want to describe my “first time” experiencing corticosteroid shots. I was lying face down on a table, with a monitor in front of me. I believe the doctor did about four of these every hour, so he was always rushed. He said, “Charlie we’re going to inject you using this very long and very scary looking needle. Ok? Relax.” I glanced at the monitor which revealed the needle had already penetrated my numbed skin. As nervous as I was this was fine - great! I didn’t feel a thing. I was so relieved that this appeared to be a seemingly painless process!
Then the doctor said, “Now here’s where it is going to hurt really, really, bad as we get closer to the vertebrae and the nerves causing your sciatica, but that’s your sweet spot!” I suppress an urge to giggle and simply nod. He continues, "Ok? So just relax. Relax and bear down. And hold...and relax. It will hurt terribly, but relax. Relax. DON’T MOVE!"
Within seconds, I am wincing, my eyes crossed, and tears welling up by the blinding pain of the needle approaching a network of nerves in my spine. I am freaked. But suddenly, I feel a welcome wave of relief as I speculate that I must have surely already endured the worst of it.
Boy was I wrong. He continues and I realize that the last spike of sharp pain was nothing. In fact, it was dwarfed by a new surge of blistering pain (I can almost hear the high pitched panic stricken voice of Madeline Khan because “the pain is ... like FLAMES!”). He continues in his calm, monotone voice, "ok, we are injecting this hormone right in there between L4 and L5....good. Ok, we have to go deeper, ok? You are going to feel better soon, but first you will feel sharp painful stabbing pains. Just bear down and relax"
I feel like i could use a Lamaze coach at this point, but i am far too terrified for clever quips, and who would understand anything I say anyway with the way i am biting into the pillow? He says “Ok, Mr. Finlay, can you stand up and walk for me?”
I mumble under my breath, “probably not, Doctor Mengele.” But then, suddenly I am vertical, and I’m like "HEY How am I doing? WHAT back problem? I don’t have a BACK problem..." I feel like I can cartwheel home (I make a note to dig out my tap shoes...). But I will soon learn this is a short-lived way to deal with back pain. The pain returns, and I continue to get shots (which, after my third visit my doctor tells me they “can be very dangerous”).
By late fall, I have a brand new health issue (HIV) that takes center stage and I concentrate on getting that stabilized. During this time, I am trying to build my consulting practice, and am working on an assignment for a major organization, but am shuffling a bit as walking becomes difficult. I am attending Physical Therapy, but need to take cabs door-to-door because i have such difficulty walking. Then, while spending New Year’s Eve in Miami with one of my besties from my Boston days, I discover I can walk less than one block. On the return flight to NY, it worsens. At some during flight, the sharp pains subside, and I am left completely numb.The airline assists by deplaning me with a wheelchair, and a big burly airline escort retrieves my luggage, and puts me in a taxi. I was a bit embarrassed because of my compromised mobility (and fragile male ego), so, i stared him down a bit finding solace with the secret knowledge that I could most definitely bench press more than this dude. Mos def. I just can’t seem to walk. But I can bench like a sonovabitch.
I concede to the last resort: surgery. I find a doctor who says I need a “Laminectomy” which doesn’t require an overnight stay. While it sounds like a cosmetic dentistry procedure, I learn that it involves whittling down the area of my vertebrae or disc that is touching the nerve, and scooping out any debris. I do a lot of research on this doctor, and discover he worked on a celebrity I like, so we move ahead. The surgery was in February. We thought it was a success. I went back to the gym, and to my physical therapy.
By mid March, my back starts swelling up and turning purple. I can’t really see it, but it feels sore-ish. My boyfriend sees something is wrong, and I start getting a high fever. I thought, what now a flu? I went to the ER per my doctor’s request, and it was confirmed that I had a staph infection, and likely got it during the first surgery. And it may have been complicated by my compromised immune system. Although the surgery was a success, and my wound was healing, there was this awful thing happening under the skin destroying tissues, and deemed a new surgical emergency.
I had an extended stay in the hospital, and was very sick. The second surgery changed my very small scar into a very big scar as they needed to excise the purplish tissue - they called it “necrosis” (um...gross!). I was told if it had gone untreated, I might have died.
I was angry. I was angry with the doctor who did the first surgery and allowed this to happen, angry I had to cancel two March trips -- a Florida trip with my friends, and a DC trip with my boyfriend. And I was angry that this was happening only a month before my 50th Birthday -- I had been planning a very self-indulgent celebration and this was a very inconvenient development! Just weeks ago, my biggest problem was whittling down an invitation list, and finding the right photographer, music, and cake designer!
How quickly all those trivial pursuits changed. I was now dressed in an ill-fitting, decidedly untailored and egregiously unflattering hospital gown, lying on my back arguing with the nurses who couldn’t get me the proper HIV meds, because they “must be new because we never heard of them...” My boyfriend (who continues to be irresistibly heroic through all of this) brought me my HIV medications (and Aveda products) from home. My hero!
Once stabilized after surgery, the next three or four days brought a series of dozens of IV bruises on my arms and and hands (so many, that I started naming them). And I was given a catheter in my left bicep (oh no! that was my better one!). I thought the catheter meant that they had given up on trying the IV thing. But it was for AFTERCARE. Yikes! I was sent home with this tube coming out of my left bicep, and a 30 day order of antibiotic IV that I needed to administer each night for 30 minutes via the catheter (I know... right?) A visiting nurse came to my apartment to clean the mechanism and replace the tubes weekly. During the course of the month, layer after layer of my skin flaked off, and I lost 20+ pounds. I noticed that I was deeply depressed (I was chipper in the hospital because they were feeding me pain medication every four hours, but now I realize I am in withdrawal -- damn!). So, I have now been reduced to a flaking, strung out, newly diagnosed, and very sad person with an atrophying left bicep. I wanted to jump out the window. Recovery continues but is slow. And seldom pretty.
In the past few months, I’ve gotten every little cold and flu. Then I got strep throat/bronchitis. Complications arose when the antibiotics I got from my doctor caused my Achilles tendons to weaken (whaaaa...?), and I began shuffling again. I seriously doubt I will ever have a proper lower body workout again (but my upper body remains freakishly strong thank heavens).
Moral of the story? Not sure there is one. It just sucked. But, I did learn a lot from this experience. Simply put, HIV complicates things. Not in an onerous or impossible way, I can deal with it. I just have a set of “New Rules” with which i must comply, although I am not entirely familiar with what they are (and they are not quite as amusing as Bill Maher’s New Rules). But here’s what I now know:
“Charlie’s New Rules of HIV”
- I need to be very careful and try to prevent exposure to germs and other viruses.
- Staph is rampant in hospitals and gyms, and I need to be more cognizant of my health.
- I have to listen to my body when I am not feeling well (mind-body connection).
- I must monitor my viral load, cholesterol, and other blood test data with my doctor.
- My freakish work ethic needs to be modulated (I often forget to eat, or don’t get enough sleep when engaged in a big project).
- I need to work hard on better work/life balance, eating right, getting sufficient rest keeping up my mood.
It’s a lot, but I can do it. I must do it -- because the alternative is horrifying. And I am grateful for this horribly painful lesson.
Next time, I will recount one of the most self-indulgent events of the year -- my big 50 Birthday! It starts out kind of Miss Dalloway-esque... but (SPOILER ALERT) ends in a better place, thank heavens..