As you might suspect from my last posting, my Guillain Barre Syndrome was the least of my problems in November. Okay, well not the least of my problems, but much lower on my list than hauling around a broken foot.

I did have a follow up with my orthopedist this morning, and had x-rays done of my foot. It is healing, and I can now stop wearing the big air-cast, and fall back to one of the fashionable post-op shoes I’ve collected over the years. Two weeks of that, then I can transition into a stiff-soled regular shoe until the foot is completely healed, probably in another month or so. So, unless I do something truly stupid, I won’t need surgery, and I can drive again. Yay!

Since I was stuck waiting for that bone to heal, I did little to push myself hard this month. As to be expected, I therefore had very few instances where I felt any sort of residual GBS numbness or pain or tingling. I do still experience a few issues with my eyes, mainly if I spend more than 9-10 hours in a day staring at my computer screen, or worse, at my phone. For the most part, however, those symptoms are gone by the time I wake up the next morning. In the worst case, when I’ve pushed too hard all week, I’m usually better by the end of the weekend if I truly take a break from intense screen work.

I’m not ready to call myself completely cured of GBS. But I can live with the symptoms as they are now, though I do hope that with time, my eyesight continues to improve. Who knows, perhaps the eyesight issues are more related to getting older, than to GBS?

Nah. That can’t be it.

That’s pretty much it for this month’s update. I like these short ones. Sometimes not having to talk about GBS is the best sign that I’m not having to think about it on a daily basis. Life is a lot better when that is the case.

By any measurement,  October was my best month of recovery since this long battle with GBS began. Rarely did I experience any of the numbness that has plagued me for nearly two years. My energy was, for the most part, better. I was able to participate in some of the family events, like making apple cider at the in-laws last weekend—something I haven’t been able to do for the past two years (the first one due to recovering from a dislocated shoulder, and last year due to GBS). I even had the cold that’s been ripping  through the entire population of the Pacific Northwest, and that didn’t trigger any kind of relapse.

The only GBS-related issue I still struggle with, relates to my eyes. I wanted to start doing my rehab exercises for them this past month, but by the end of every day, my eyes are just so exhausted from all the computer work, that the only thing I want to do is close them.

It seems like most of the issues affecting me these days are ‘normal’ ones: the aforementioned cold, the acid reflux I’ve been treating, and a sore neck.

The cold will, I hope, go away on its own… sooner rather than later.

The acid reflux is due to the hiatal hernia discovered last month. I’m on new meds for that, have lifted the head of our bed four inches, and have changed my diet to eat fewer tomatoes, fewer citrus products, no fried foods, smaller, more frequent meals, cut out chocolate (for the most part), and have continued to abstain from caffeine in all its forms. On days where I break my new diet (by overeating or having a hot cocoa in the afternoon to get me through the day), I really feel it at night in the back of my throat about 3:00 in the morning. But if I stick with the diet, I sleep much better, and wake up feeling rested.

My sore neck I’ve been treating by continuing my nightly regimen of stretching and by trying to find new pillow for my bed. I’ve bought four new pillows in the last month, including one of those gel-bead pillows that are supposed to conform to your neck “perfectly”. That one worked for about three hours each night, then transformed itself into this rock-solid torture device that couldn’t be less comfortable. I’ve settled on an old pillow I’ve had for years, that used to be too soft, but now seems just about right. It does, however, tend to encourage side sleeping, which is something my shoulders don’t appreciate in the morning. It’s still not perfect, so I’ll keep on searching.

As each month goes by, GBS slides further down my list of primary concerns. Normal life, with all it normal joys and concern seems to be gliding back into place, albeit a little more slowly than I wanted. I’m still conscious of the GBS, and back off whatever I’m doing when I approach the edge of overdoing it. I’ll probably never be completely confident that this is totally behind me—after all, I still fear a relapse of the mono I had in 1997, and that only lasted 4 months. I’ll be on my death bed due to natural causes in fifty years, and still be worried about it. But at least now I have faith that I’ll get through this phase, and will be able to do normal things at some point in the future. There were many days in the last 21 months where I couldn’t say that with any sense of confidence.

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.

19th months have now passed since the onset of Guillain-Barre Syndrome in February 2012. August, was, like so many of the last few months, filled with ups and downs.

At the end of last month, I began a slow recovery from a stomach bug that knocked the stuffing out of me for the first couple of weeks of August as well. I ended up losing about 10 pounds before my weight stabilized, and am now beginning the slow climb to get back to my ‘playing-weight’ of 175.

Unfortunately, the illness weakened the muscles around my neck, and that caused a disk in my neck to destabilize (I have a history of neck issues). I spent 10 days fighting debilitating migraines (including massage therapy, chiropractor, ice, and heating) before I was able to get it under control with exercise and a new prescription for a non-NSAID anti-inflammatory called CeleBREX. The CeleBREX doesn’t reduce the inflammation as immediately as plain-old Ibuprofen, but it also doesn’t hurt my stomach as much, and one dose lasts for 24 hours.

But what was probably the most effective treatment for my neck was resuming the exercises I learned in physical therapy last winter. I’d slacked off from doing them when I went back to work, and when the stomach bug struck, everything went to hell so quickly, I couldn’t recover. I’ve learned my lesson, and am now making sure that I do the exercises at least 6 days a week, even if my GBS symptoms are bad that day. If my neck goes, I don’t sleep well, and my GBS symptoms are worse. That downward spiral is hard to stop once it starts.

I did see both a gastro-intestinal specialist and my neurologist in August as well. I’ll be having an upper-GI scope done in September to check to see if my over-use of ibuprofen caused ulcers which made my stomach issues worse. I’ll also be having a final follow-up head-and-neck scan done to make sure nothing has changed with regards to the damage caused by the GBS.

My neurologist also pointed me to a likely cause for my GBS: campylobacter. The description of the symptoms of that match up very well to what I had back in January 2012. It could also match up to what I had in July of this year. My neurologist suspects that my body kicks into high gear now when exposed to it, and that could have made my GBS symptoms worse this summer. So, no more raw chicken for me…

In an effort to try to reduce the stomach issues further, my neurologist suggested I try a muscle relaxant called Flexeril instead of the CeleBREX. I took it for the first time right before I went to bed on Saturday night. I slept for 11 straight hours (which was fine). But when I woke up, my GBS symptoms were horrible. I had no sense of balance. My legs would barely hold me up. I couldn’t keep my eyes open. At noon, I went back up to my room and slept for 2 more hours. I was three in the afternoon before I felt half-decent, but even today (36 hours later), I don’t feel quite right. Never again.

On the upside for the month, my kids, my wife, and I made a week-long trip back to Canada to see my family near the end of the month. I was worried that the trip would knock me down, and set me back, but it really didn’t. I was able to rest when I needed to. The only mistake I made the whole trip was accidentally drinking a cup of non-decaf tea one day. I had a pretty good case of the numbs after that. So I guess I’m still not ready for coffee yet either.

I spent little-to-no time using computer screens during the trip, so my eyes seemed more relaxed when I got back. I was able to get up first thing the morning after our return, and headed into work for a full day with no problems.

I don’t think I’d be able to do a really active vacation yet (like walking around Disney, or hiking on Mt. Rainier, or a week in Rome), but a trip to an island somewhere with plenty of sitting by the pool or the beach sipping… well, sipping something with no alcohol in it… should suit me just fine.

September is shaping up to be a busy month, with the kids starting school this week, a bunch of appointments, my regular work, and editing that needs to get done. But I’m also going to stick by my neck exercises, and resume my vision therapy to see if I can’t get my eyes closer to normal as well. That’s the plan, anyway.