Seven Months with Guillain-Barre Syndrome
Well, since my last update, quite a bit has happened, both good and bad.
First, the good news. Back when I was diagnosed with GBS, the door was left open just a smidge that this wasn’t GBS, that it might, in fact, be Multiple Sclerosis. This door was left ajar because many of the tests were inconclusive. GBS isn’t one of those diseases where you can pee on a stick and know 10 minutes later what exactly you have. And even after a month, we still weren’t 100% sure. We were 99.9% sure, but there was always the possibility that this was some sort of MS. Which would really suck. Don’t get me wrong, GBS is bad, but MS scares the crap out of me. That shit is terminal.
To finally eliminate MS, we needed to wait 6 months, then to do another brain and neck MRI, and compare the results to the MRI done in February. The six months was up in August, so I had another scan done. The scan came back clean, which means that this is definitely not MS. Yay! Wahooo! That .1% chance was a huge weight on my shoulders and now it is gone. I (and my whole family) are greatly relieved.
The bad news is that I had a bit of setback in my recovery from GBS during August. It started in July, when I overdid it working, and slept wrong one night and hurt my neck. That led to a few sleepless nights, and too much ibuprofen, which upset my stomach, which led to heartburn at night, which led to more sleepless nights. No sooner had I got that under control, than did I catch a horrible chest cold brought home by my kids. It took me down for the count completely for 6 days, and didn’t completely clear up for three weeks. During those first six days, my GBS returned with a vengeance. One night, I woke up around midnight, with my arms and face completely numb again, and thought I was going to have to go back into the ER. Panic set in, and I feared going back to sleep. I even woke my wife up to tell her what was going on, just in case it got worse more quickly than I could deal with it. But after an hour or so, the numbness started to subside just a bit, and I was able to sleep.
I ended up taking 12 days off work to get the GBS back under control, during which time I did little but lay on the couch and watch TV (again). I talked to my neurologist about it, and we’re planning on doing another round of the IVIG treatment just to make sure we’ve stopped this dead in its tracks. I was supposed to do it a week and a half ago, but my health insurance company is screwing around, making it really difficult to find a facility that is a) covered in my network, and b) is a facility where my doctor has privileges. We’re still working that out, and hope to have it resolved soon. The truly stupid thing is that had I gone into the ER that first night when the symptoms were really bad, I could have had the treatment there and then, and it would have been covered, as long as I was treated as an inpatient. They just won’t cover the less-expensive out-patient treatment. How insane is that? Gotta love the US Healthcare System. Best in the World. ahem.
Anyway, the time off from work really did get me back on track, though I am not quite back up to where I was, recovery-wise, back in late June, before the downward spiral began. I’m taking it easier now, and obeying a hard-cap on my working hours of 30 hours per week for the foreseeable future. Even if I do feel better on a given day, I’m going to stop at 6 hours of work. I just have to until I truly am recovered.
Sometimes I get a little nervous revealing this much about my life and health in such a public place. I know that the insurance companies that cover me read this site (analytics are a wonderful thing). I know that someday, down the road, a prospective employer may read this site. These are risks I balance with every word I write. But I came to a couple of conclusions while thinking about this:
1. What I write here is true, and what I file with the insurance companies is also true. So either they are going to cover me, or they’re not, but they aren’t going to find anything on here that could ever be construed as fraudulent—which is all they seem to be concerned with anyway. If you haven’t guessed it by now, I have very little good to say about insurance companies these days. I believe that many patients with long-term illnesses are made worse just by the fact that they have the stress of dealing with insurance companies. Single-payer health insurance needs to be the next evolutionary step in the US Healthcare paradigm.
2. I do more good for people who are just starting their battle with GBS by writing about it than I do harm to my own position. I have received letters from GBS patients who have said they really appreciated what I write about here, and that it has helped them to set expectations and to serve as inspiration. That makes me very proud of what I do here, and inspires me to keep writing whenever I can.
My return to writing on a more regular basis is helping me to deal with these setbacks. Even if it’s just a blog entry, or a couple of pages of editing, it feels like I am moving forward with something, instead of just treading water. I was looking back through my writing folder last week, and I realized that the day before I came down with GBS, I was finishing the plot plan for my next novel. I’ve been away from it for so long, that I had completely forgot about that. It’ll be interesting to go back and review the plan to see if it still sounds as good as it did back then. But it will be a while before I take that on. I still have other projects to wrap up first.
August was a bit of a disappointment, and, at times, was very difficult to deal with, emotionally. I was doing so well back in June / early July, that I truly thought that by September 1, I would be back at work full time, and back to exercising on a regular basis. Now, I’ve had to re-adjust that timeline. Perhaps a couple of weeks from now, I’ll be right back it. Maybe it’ll be January. Or maybe it’ll be a little longer than that. Right now, I’m back to taking it one day at a time, and hoping that tomorrow is a little better than today.