Rare

The saying goes, if you hear hoofbeats, you think horses, not zebras. That very line of reason is why it took so long for me to get accurate diagnoses for so many ailments I suffer from.

These days I have an excellent medical team who fully know my medical history and know they must always be on the lookout for zebras when it comes to me, because I rarely suffer from an illness that isn’t rare.

Usually having a rare illness sucks because less may be known about the illness and how to treat it. However, when I received my cancer diagnosis, I felt grateful that what I have is a rare cancer that is very treatable. I was fearing that the tests may show lymphoma, but what I have is a salivary gland cancer, and this type of cancer, though rare, is often treated with surgery alone with a 10 year survival rate of around 90%.

The tumor was spotted on an MRI. I get an MRI done every year to track the progress of multiple sclerosis (MS), which is considered a rare condition even though it is not all that rare in our region. MS is considered the underlying condition for two other rare conditions I suffer from: trigeminal neuralgia (TN) and sporadic hemiplegic migraine. I had Gamma Knife for TN earlier this year, and it has made a huge difference. Hemiplegic migraine, a rare type of migraine that causes temporary paralysis on one side of the body, is the main reason I seldom drive anymore.

I am often frustrated that I have MS and that I likely had it for more than a decade before being diagnosed. Like many people who have had to quit working due to a disabling condition, I ask, “why me?” All I ever wanted to do was work to help people, and whether that was through journalism, teaching, or my work in the non-profit arena, that is what I did. I guess I still do that to a lesser extent through the art and writing I contribute as a volunteer for some area non-profits, but I am seldom able to contribute more than a few hours in a month, which is far less than I might have been able to contribute if I had began treatment for MS years ago.

Oddly enough, I now find myself feeling grateful that I have MS, which is the reason I have an MRI every year. What if I didn’t? Maybe the cancer would not have been detected until it was too late.

As I seek treatment, I will be taking some time off from my volunteer work with Middle Wisconsin. I plan on returning. I just know that right now, my focus needs to be on my health, and I simply would not be able to devote the energy to writing and editing. I have been assured from some of my colleagues that publication will continue in my absence, so please keep on submitting your articles by emailing them to editor@middlewisconsin.org

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