HIV-Positive and Battling Bell’s Palsy
The first symptom was the loss of taste. My tongue looked infected with thrush and I thought all that was wrong was an opportunistic infection.
When the right side of my face drooped and speech was extremely impaired, off to the emergency room I went, where some of my medical records are digitized and accessible by the staff, who knew me from previous visits.
It was only a matter of seconds before the intake worker summoned a nurse to immediately get my vital signs, and the entire staff was in urgent care mode dealing with me as if I were experiencing a stroke.
The ER doctor quickly determined it was not heart trouble giving me the health-scare but the onset of Bell’s palsy, and a peripheral nerve dysfunction responsible for facial paralysis. She said it could be a month or more before restoring muscle functions, considering my HIV-poz status and being over age 50.
Thus began my journey into the world of Bell’s palsy, which medically speaking has nothing to do with living with AIDS, but because of the compromised state of my immune system and the additional stress burden of dealing with the latest serious health challenge.
I saw my physician the day after the ER visit, and we created a treatment plan, with key components the first being me putting every self-empowerment lesson I could think of into effect. Going over my latest labs with many good results, I was reminded that such good numbers were no guarantee of preventing a condition such as Bell’s palsy.
We decided I’d go on a steroid and increase my acyclovir intake, standard treatment, and that I’d pack as much daily acupuncture and chiropractic sessions as possible on my schedule. Video reports and blog posts documented what I was going through and I went public with the Bell’s palsy for two reasons: One, to let friends and family know what I was experiencing and why I looked so different. The initial stage with the most severe drooping was part of my life’s journey, and to get through it meant leaning on my on- and off-line social support network. And two, I wanted to hear from others, HIV-positive and -negative, who dealt with this condition and receive their advice and empathy.
Physically, I contended with a paralyzed lower eyelid that didn’t meet the upper one as it should. An ointment was applied to the lower eyelid, eye drops kept the eye moist and I wore a patch during the daytime, before donning a tres gay (think Gloria Swanson in "Sunset Boulevard") eye mask for sleep at night.
With my salivary glands not producing oral hydration, I used a fluoride and xylitol spray to produce saliva and kept my lips slathered in balm. To improve speech and exercise facial muscles, I lifted my cheek and gum to better form words and be understood. The diminished hearing in my ear suddenly was gone and sounds were incredibly crisp and abundantly clear, sometimes a little too much so.
Several people with AIDS who had Bell’s palsy highly recommended acupuncture with e-stim wires attached to the needles inserted into the affected facial and head areas. Juicing the nerves and muscles with low-watt electricity made me twitch or pulsate, wonderful sensations that meant the paralysis was lessening.
After each acupuncture treatment, my ability to articulate words noticeably improved not to mention my body was feeling relaxed and my mind at peace. Every time the chiropractor adjusted my neck and the source of constant pain where the affected nerve extended up to my cranium, I had natural relief.
A true believer that activism is a healing endeavor, I organized fun pickets expressing solidarity with LGBT Russians fighting a backwards anti-gay propaganda law. It was vital to show my temporary face to the world and say "eff you" to Bell’s palsy!
I was able some days to receive a triple-whammy of alternative healing appointments and a solid ten-days had at least one such appointment. Not only was my wellness experiencing daily restoration, but my spirits were uplifted too, and rare were the times when depression and the blues troubled me. Not one Ativan passed my lips, I’m proud to say, during this ordeal.
The National Institute of Health’s web page for treating the condition gave me hope I would regain wellness with these facts:
With or without treatment, most individuals begin to get better within two weeks after the initial onset of symptoms and most recover completely, returning to normal function within 3-6 months.
It feels excellent to fit the NIH profile for recovery. Four weeks after receiving the Bell’s palsy diagnosis, most of my facial functions and movements are back to normal, a little more "poz face" on the affected side, and only minor hard-to-notice lingering dysfunctions. I’m quite restored to fuller wellness.
L’Chaim, especially when life throws you a curve ball that is seriously challenging and impossible to hide. It’s all part of being alive, which I’m quite happy to report applies to me.
For more information on Bell’s palsy, visit http://www.ninds.nih.gov/disorders/bells/detail_bells.htm