I wrote most of this in 2016 for a Lyme support group. Happened upon it this evening. It still resonates. Likely will forever.
This evening, I’m reflecting back to the early ’90s. I don’t like to visit it often. It is when I acquired Lyme Disease. And…Am back there….
An image of my friend Beth Ann yelling at a girl that I am sick, not drunk, and to get out of our way.
An image of my youngest sister not leaving me, even though she has a plane to catch, later telling me she wasn’t leaving because my feet were blue and she wanted to make sure I didn’t look down and see that, and wouldn’t leave till Mom was home…
An image of a sister visiting from Los Angeles, asking me why I am not in the hospital. Next day, telling my doctor she said that. A day or two after that, being admitted.
Hashimoto’s Thyroiditis. Hypothyroidism. Neither of which would have been causing the symptoms, but lifelong treatment for those began…
Three -oscopies in as many months…most every test of every kind showing something a little bit off, but nothing integral. Lots of incidentals….
And then I go forward two years, phoning a sister at work, saying my temperature is 95 something and I am cold. She leaves work to take me to the emergency room, where I had been within the last week. The Attending so arrogant, I wrote a letter to the hospital advising that, “We all make mistakes, but rudeness is a choice.” My gallbladder was removed the next day.
He was not the first of dismissive doctors…
The odyssey went on until 2008, when a doctor finally ordered a Western Blot.
Then, the current odyssey began.
I hope we with Lyme are cogs. I hope our partial stories somehow serve. I hope that, now that Lyme is one of the Flavors-of-the-Month on the disease menu, no one will feel as alone and scared as I felt; that no one will lose their friends, closeness to and with family, employment and future employability, social life. I hope that losing control over one’s body will be the “tell” – that treatment will arrive sooner and that no doctor will ever make a patient suffer because they either did not see, or did not have, an expletive rash somewhere on their body.
Finally, I hope that whatever symptoms we each experience from this one-size-does-not-fit-all disease, this mapless strain of strain, do not take away our respective abilities to have a quality of life, regardless of what cards we are dealt.
Am thinking of each of you, none of whom I have met, and with only my version of hope, am sending out thoughts of imminent healing to your entire being. Pollyanna is channeling through me. She does that from time to time.