Round Three
It's been some time since I wrote here. The truth is, time has marched on and I've had my hand in many things. I've been writing more, and saw some of my work published in the past two years. I started a new job working as a nurse with underserved people (a match made in Heaven, possibly literally!). I created a website for people living with chronic illness, and write weekly with ideas and stories. My kids have grown, and some of them now tower above me. I've been living a lot of life.
Overall, it's been a good season. I've adapted to my diagnoses, and my symptoms have been (for the most part) manageable. I've become adept at reading labels, researching ingredients, calling chefs before eating at restaurants, and perfecting a few go-to gluten free recipes. I work part-time and take daily naps, and I pace myself with all of my activities. In short, I've maintained what my neurologist and I call "status quo." And for two years, that's been enough to keep the worst of my symptoms at bay.
But the start of this calendar year brought about a massive relapse. In spite of all of the changes, my symptoms did recur, and they did so with a vengeance. All the old friends are back together: muscle heaviness, extreme fatigue, headaches, dizziness, vision changes, weakness, tremors, joint and muscle pain, sleep disturbances, massive brain fog and mental changes, etc. There have been some new ones this time too, like difficulty speaking by the end of the day. My trusty cane has gone everywhere with me for over a month, I've had to cancel just about every plan I've made, I've worked minimal hours, and I've become very well-acquainted with the couch and my bed.
Each relapse (this is now the third) has caught me by surprise. Even in my good stretches, I have flare-ups. They typically last a few days to a couple of weeks, with an increase in my symptoms during that time. I can almost always trace them to something I did or something I ate, or to an illness or other stressor that triggered a flare. Those are manageable and somewhat predictable. These three relapses, though, are another beast entirely. They tend to come out of nowhere. I have a few days of what I call "warning shots," with increased fatigue or headaches. And then we are full-on. They're massively debilitating, and affect every part of my life and body. It's like being pulled suddenly underwater and held there.
I've spent the last two years reading and researching and learning all I can about both of my diagnoses, and especially my small fiber neuropathy. I've pored over studies and articles to learn all that I can and better understand what's happening. But I have yet to find in any article, study, or even patient forum, a pattern of relapse and remission like mine. It just doesn't seem to happen.
Last week I spoke with my neurologist's nurse and filled her in on the latest recurrence. I received a call back almost immediately from my neurologist: she was going to send me to physical therapy to address my weakness, and she was referring me to Cleveland Clinic for further evaluation to see what else might be happening. In other words, this is definitely not a normal presentation for small fiber neuropathy.
It was extremely validating at first to have her recognize that the pattern didn't fit and to follow up so quickly and thoroughly. I felt reassured being sent to such a well-respected place. And, to be honest, I felt a little less like a hypochondriac sitting at home imagining bad things. There really was something more happening here.
Right on the heels of that relief, though, came a whole host of new fears and worries. Being referred means we're back in the deep waters of chasing a diagnosis. It means waiting on new tests and studies, with many negative results along the way. It means sitting with new providers and trying to wrap words around what I'm experiencing. It means juggling the symptoms with the exhaustion of a parade of appointments; or potentially seeing the providers once I'm back in remission, when I look almost "normal" in a clinical sense. It means many scary possibilities that were ruled out in the past are back in the wings again. It means a lot of unknowns, a lot of waiting, and a rollercoaster of emotion ahead.
We're already sitting in the waiting period, as I wait to hear from Cleveland with a date for my visit. I anticipate it will be a long visit, coordinating as many appointments and tests as possible while we are there.
In the meantime, though, we continue to live things out a day at a time--sometimes an hour at a time. Today, for instance, I'm having a particularly bad day. I stopped speaking for the most part around dinnertime last night. It's hard to explain, but it just takes monumental effort to even form the words. When I did speak, it was usually in a whisper. Projecting my voice was exhausting. Like I said, this has been a new symptom this time, and I'm not sure I like it. Normally it comes at the end of the day when I've been depleted by work and activities. By morning, after a night's sleep, I usually have the steam again for talking. Today I did not. In fact, I didn't have the steam for much of anything: showering, eating my crunchy granola, getting dressed. It sounds lazy, no doubt, but the thought of tackling any of those things might as well be like the thought of running a marathon or climbing a mountain. I'm just not capable of it. Henry dug the wheelchair out of my closet and it's sitting ominously by the door. If I leave the house today (for example, to see Cora cheer at the city basketball tournament for her school), it will be on wheels. Which will be the first time I attend a school function in a wheelchair...
We're no strangers to seasons like this, but it doesn't make them any easier. There have been many layers already, and there will be many more to write about here or elsewhere. Times like this are always great fuel for my writing! But more than anything, we want to live this well. We don't want to be victims of any circumstance, including this one. We also don't want to be false or disingenuous. So we inch our way through this, one moment at a time, and we'll see where it leads.
