Come join the party.
This journey gets stranger every day.
I don’t normally have headaches. But I’ve had a three-day migraine, followed by 3 days with no headache, then another three-day migraine, I’m now on day 4 headache free. I hope I’m done.
Four times this week, and once last, I also woke with a new strangeness. I was wide awake, could open my eyes and look at the clock and see things in the room, but couldn’t move a muscle. This strange paralysis lasted only a minute or two, but was very disconcerting.
Add this to the recent loss of my sense of smell, and the tremors I’ve had in my arms and legs for years and years, and the sleep disturbance I’ve had for longer than I can remember, and the migraine complete with auras, and the small white matter lesions that showed in my brain MRI, and the left foot drop (that causes me to trip) but happens only sporadically, and not often enough for the PT to see it happen – even with an hour of me walking back and forth. And it all adds up to something that looks like my immune system, not content to attack my joints, has invited my nervous system to the party.
Last winter, I saw my primary care doc and the ENT for the smell tests and MRI. The ENT doc said it wasn’t caused by something he could treat (structural, infection), and that it was most likely nerve related, because it was affecting both my smell and taste. We looked for other possible causes and did tests that ruled out Lupus. Since there was nothing else that we could definitively test for, I then shrugged my shoulders and decided I’d hope for the best – that I was in the 85% that never figure out what causes their sense of smell to diminish.
I’m still hoping, but maybe a little less optimistic. The symptoms are pointing more and more towards early PD, which is just another fancy way to say that my immune system is attacking my nervous system. Sigh.
Time to I shift my focus, and look at what I can enjoy.
My first rose of the season opened today. My daughter says it smells divine.
After a moment of sad regret, I realized that mourning for what is lost robs me of time I could spend enjoying what remains.
So, I will focus on drinking its beauty with my eyes and basking in the pleasure on my daughter’s face as she inhaled the scent, and be grateful for the present.