I'm a lousy patient. I finally had to shut down and take two weeks of vacation to see if that will work to stop the incessant infections that are coming because of a compromised immune system.
In just 10 days, an abnormal result showed an autoimmune disease might be eating my salivary glands; strep throat came next; and then I had pain so excruciating that I went to the ER thinking my kidney stones were back.
It was a really odd and random attack below the belt, as my long-suffering wife accurately said. Officially it’s called “Epididymo-Orchitis” which is like “testiticulitis.” I made up my own term pronounced “oh-my-goddess that-really-hurt-us.”
I started this website resting flat on my back in bed with a laptop and high doses of meds. I hurt so badly I couldn’t sit in a chair and cranked out 1,000 words an hour on the novel I’m planning.
I never tried writing this way. Maybe I have moved into a new class with Hunter Thompson and Ernest Hemingway, writers who deluded themselves into thinking they did better with their own forms of heavy medication.
Thompson’s “gonzo journalism” was fueled by drugs. Hemingway’s problem was booze. Neither had happy endings.
I promise that my blogs won’t repeatedly sound like the old folks’ home where everyone spends the day comparing illnesses.
I would rather read a textbook instead of learn from painful experience during these 18 months of specialists trying to solve a health puzzle. The docs who have witnessed my full-blown attacks swear I’m having strokes. But the damage has destroyed nerves in my ear, triggered huge patches of autoimmune rashes on my torso, random infections like I mentioned above, and brain meltdowns that come and go without any real pattern or predictability.
I am frustrated that I have three abnormal results for Multiple Sclerosis (MS) from a spinal tap but cannot get in to see the neurologist who ordered the test until late October (two months from now). The family doc looked at the results and said I have MS — but the official verdict is up to the neurologist.
Doesn’t change anything. I have no choice but deal with it and there are no easy buttons for the docs.
I’m beginning to think that MS stands for “miscellaneous” when the docs are baffled. One specialist said their other secret for the unknown is steroids because it has the uncanny ability to work on everything for a while.
My new normal includes screeching in my ear, called tinnitus. I had major balance issues 18 months ago when something ate my vestibular nerve in my left ear. Now it’s eating my hearing.
Balance issues returned and are the other new normal — where moving around is like walking on a mattress. Some days the mattress is firmer than others. Every once in a while I stumble or fall.
I have moments of panic where I gasp for breath (asleep or awake in my easy chair watching TV). Other times I have profound memory lapses (absolutely unable to remember such a simple thing as my granddaughter’s name). In other episodes, my brain fails the simplest tasks of spelling and typing — something almost as involuntary as breathing for me — and now both seem to act up at times.
I don’t want my next book to be about MS or medical mysteries. But I feel a new sense of urgency to get to my wish of writing a novel while giving my greatest energy and effort to work.
I am lucky to have a job I love, winning tangible results for farm families that work harder than anyone you’ve ever met. I hope to post about some of those successes, my current form of story-telling to promote farm sales.
The docs say the only way I can slow these episodes is to shut down or slow down, even if it takes a six-week leave of absence.
This is very hard when I want to push even harder in case I’m on borrowed time to do all the things I want with all my heart, mind and strength. This wave of three infections in three days forced my hand and that’s why this two-week vacation.
Instead of a setback, I’m choosing to use whatever is going on as inspiration and a motivator. Now I need to learn to juggle how to do more with less.
These health issues are just one chapter in this writer’s journey. The other chapters need to be full of so much more.
In a way, this page is my third book, a virtual and public account of the next chapter of my life. My story is not over.