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I Used To Be Able To Whistle

October 21, 2009

It’s been a long time between entries so I figured I’d better provide an explanation.

I used to be able to whistle. I was really good. Tone, pitch, volume, and timber, all were solid. I loved walking down the street on clear crisp days whistling old ballads with beautiful melodies. Old women would turn and smile, remembering some wonderful moment from their past. But now all that’s changed.

I’ve always lived in the Northeast and ticks have been a part of my life for thirty years or more. We started paying attention to them when Lyme Disease was identified, but they were never really a big concern. We’d spot ‘em and brush ‘em off or tweeze ‘em out. And if the little bull’s eye showed up we’d trot off to the doctor for 14 days of oral antibiotics.

Last October, when my business world fell pretty much apart, I started getting racing heart beats and feeling like I had to sleep all the time. This continued for a few months and I wrote it off to anxiety over my work. Then, in March, I decided to quit smoking (with the help of a drug called Chantix) but quit the drug after two weeks when a rash broke out on my forehead. The original aches quickly progressed to the point of excruciating pain – like an ice pick being driven into my head – and a diagnosis of shingles. Well, that passed in two weeks and I was still smoke free, but the fatigue and (what I call) panic symptoms continued, so I sought the help of a psychotherapist. No luck. After two months the symptoms continued.

And then all hell broke loose. One Friday evening my girlfriend and I went out to a quiet Italian dinner. The distractions of the symptoms, my fatigue and the fear about what was happening to me was taking a real toll on our relationship. So we went out for a quiet night. We had a great meal and we each had a single glass of Chianti and went home to bed.

At 1:00 AM I awoke with a blinding headache that lingered through the next two days. This was no hangover. I was taking 10-12 over-the-counter pain pills each day with little impact on the pain. By Sunday night it felt as if someone was driving an ice pick into my forehead. I was sure it was shingles again. So was my Primary Care Physician (PCP) who I dragged myself in to see on Monday morning. He acknowledged that shingles rarely reoccurs like that, but he ran a Lyme’s test and ever ordered MRI’s with no results. Must be Shingles again … but where’s the rash?

By Thursday I’d found a drug (Lyrica) which at least moderated the pain. Vicodin wouldn’t even touch it. But then I awoke on Friday and my eyes weren’t working right. I also noticed that I couldn’t whistle nor keep liquids in my mouth without dribbling. This, I later learned, is called Bell’s Palsy. My girlfriend rushed me to the medical group where I saw an ophthalmologist who shot me straight over to the Emergency Room at our hospital for another MRI fearing I was having a stroke. I had a zillion tests over the next several days, four for Lyme, bunches of blood work and a spinal tap but nothing was positive and the only consensus was that it wasn’t shingles.

Fortunately, I was put on Rocephin infusions and after four days in hospital I was well enough to go home. Now the good part: two weeks and several infectious disease and neurology appointments later, just as I finished the 14th day of Rocephin infusions., I got a call that a blood test had come back from a lab in California indicating a positive hit for Lyme Disease.

I’m fortunate so far. My life has changed but it hasn’t ended. I function better some days than others, but simple will can get me out of bed in the morning and my discomfort is mild. I’m committed to finding out who the real pioneers are and who the snake-oil guys are in this arena I’ve been tossed into.

It’s been about 6 weeks since I left hospital. I don’t really know any more about my condition from my doctors than I did the day I checked out. My PCP is a swell guy, really, and a good doctor, but I’m not sure he’s all that up on Lyme, so I’ve begun a new journey. I’ll learn all I can and, hopefully, discover things that really work for me. I need to get beyond the fatigue, the palpitations, the drippy eye, the inability to face a day unless I’ve had 12 hours of sleep. Most of all, I need to be able to reconnect emotionally to my girlfriend and to be able to whistle again.

One Comment leave one →
  1. Joe Doolittle permalink
    October 24, 2009 3:40 pm

    Dear CJ: What an ordeal, and how much I pray for your “pucker” to return. Will call to connect. South Africa was a great trip, with some good work.
    Know that you an dBobbi are in my thoughts and prayers

    Much love and good cheer


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