20 Months with Guillain-Barre Syndrome

September was one of those months GBS patients dream about: a steady, positive improvement of my symptoms through the month. No big setbacks. No cancelled plans due to a drop in energy. I even got good news from my doctors which alleviated some longstanding worries.

On September 10, I went in for an upper-GI scope, fearing I had developed ulcers earlier in the summer from using too much Ibuprofen to alleviate neck pain. The good news is… no ulcers. The bad news is… stomach lining erosions from the ibuprofen, and a hiatal hernia (from who-knows-what). The erosions should heal with the medication I’m on. Not so sure about the hernia. I have a follow-up with the internist next week, so I’ll get more info then. The hernia explains the acid reflux I’ve had for the last couple of years. I’ve cut out fried and most fatty foods, and, in general that’s helped. I’m also staying on the Omeprazole a little longer than planned—at least until the erosions have completely healed.

On September 13, I went in for a follow-up 18-month MRI on my head and neck to see if there were any other signs of anything besides GBS. There weren’t. No Multiple Sclerosis (a slim chance, but nonetheless one that kept me awake some nights). No tumors. Even my neck hadn’t gotten any worse in the last year. I intentionally didn’t take any anti-inflammatory meds for a week prior to the scan, just in case they could distort the results, but the images were clean. As much as I’d love to have a good explanation for why I get migraines from my neck from time to time, I am glad I don’t have to go in and get a disc removed or fused. That would not be easy to recover from.

So how did I go from a disastrous July and August, to a pretty good September?

First, I got my stomach under control. No more Ibuprofen. No new meds messing up my systemic balance. And because I felt good, I was able to stick with doing my daily workouts, adding to them as the month went along. I took a night off here and there when my body warned me that that day might not be a good day to overdo it. Today, at the end of a very long week, seems to be one of those days, but I still got a set of stretching in.

I should say that during this month, we also had a nasty flu-like bug hit our house. Both of my kids were down for three or fours days with it, with high fevers that came and went. My son lost about five pounds. My daughter sat on the couch for three days. My wife and I had low-level skirmishes with the bug; I don’t think either of us had fevers, but we both had stuffy noses and sore throats. You think that something like that would just knock me back down. But it didn’t. Every time I come through something like that without suffering a major regression, I get a little more optimistic that at some point, life will return to normal.

I did get a lot of writing done this month. Getting back to riding the train on a more routine basis really helps with that. I’ve nearly completed a major edit on Nowhere Home, and should be turning it over to my editor for the next round of edits by the end of the month. This past week was the first week in a long time where I’ve enjoyed the process of writing in quite a while. When you’re buried under a load of crap from your life, writing can feel more like a chore than an escape. But I found myself smiling while I was finishing up a couple of scenes this week, and actually looking forward to working on something else soon.

If there’s anything that still bothers me on a day-to-day basis, it’s my eyes. Since I’ve been working more, and writing more, by the end of each day, they’re pretty tired. When I wake up the next morning and look at the clock, everything is double for a while. My eyes jump if I look to the side, especially to the right. It’s annoying, and it still limits my reading, but I’m hoping that as I begin doing my eye exercises a little more often, I can strengthen the muscles and get it under control.

On the whole, September was a pretty good month, especially considering where I started. I could use a few more like this.

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