About a year ago I was diagnosed with Myasthenia Gravis, an auto-immune disorder that weakens my muscles by keeping the nerve signals from being transmitted to them. I wrote about it at the time, and a few times since, but since it’s now a day short of one year since I first told my readers about it, I figured it was time for an update.
First of all, I need to reiterate how lucky I am. I have a very mild case of this disease. It’s so mild that, as the effects of the disease wane from time to time, it sometimes appears as if I’m in a full remission. I’m not. I still have it, but it hasn’t hit me nearly as hard as most people who are diagnosed with this.
I feel lucky because I had already adapted to life with the impairments that this disease brought with it. My fingers were essentially useless. I could not open a bottle of water and had to use both hands to get my car door open. I managed to adapt to this and continue on with my life. In the back of my mind I figured that I was in the early stages of ALS and that I would have to keep making adjustments as the quality of my life declined.
So when I got the diagnosis of Myasthenia Gravis, I was actually thrilled. What I had was treatable and not fatal.
One of the drugs used to treat MG has been a bit of an adventure. Also, my optimism at my double-vision going away completely has now been tempered with the realization that 12 years of atrophy in my eye muscles is going to take a long, long time to repair, if that can ever happen.
The problem drug has been Prednisone. It’s a wonder drug of sorts that can be used to treat all kinds of ailments, usually more effectively than any other drug on the market. Unfortunately, it comes with a laundry list of side effects that provide a whole new set of challenges.
Prednisone will spike your blood sugar and increase your appetite (further spiking your blood sugar) and it shortens both your temper and your attention span. It makes you hungry and irritable much of the time. It makes you feel like things just aren’t quite normal with you (see left). I’ve had the pleasure of enjoying all of those lovely side effects.
Before being diagnosed, I’d dropped fifty pounds in six months. In the year since I’ve been on Prednisone, I’ve put back thirty of those. I have regained the use of my fingers to the point where I can paint, sculpt, and attempt to play guitar for the first time in years. However, I do not have the patience to do any of things for more than a few minutes. By losing weight, I’d been able to discontinue some of my diabetes medicine. Now I’m back on them all at the full dose.
Prednisone has also caused me to have an adversarial relationship with cake. If I see a cake now, it will start talking crap to me, and I’ll be forced to take action just to teach it a lesson. I am not proud of my title of “Cakeslayer.”
Over the last year, my eyes have been less than reliable. As the medicine’s started working on me and reducing the effects of Myasthenia Gravis, my double vision would go away, then come back, then worsen…sometimes in the span a few minutes. This made it very difficult to edit video. That made it impossible to produce the Radio Free Charleston video show. Late last year, my eyes finally stablized to the point where I could once again edit video without getting massive eyestrain headaches. I was able to produce a couple of short videos for the PopCult Gift Guide, and last month, I was able to shoot, edit and post a ton of video from ToyLanta. There is more ToyLanta footage on the way, and I also have a “lost” episode of Radio Free Charleston that I shot early last year in the queue to be edited.
But all that’s on hold as I await cataract surgery on both eyes. It’ll happen in a few weeks. At the moment, my vision is fuzzy, whether I wear my glasses or not. Even up close, nothing quite looks right. I am not comfortable driving at night and may stop driving on the interstate soon, until I get my eyes done in May. I’m also using that as an excuse for all the typos you may see in PopCult. The reason I posted as much video from ToyLanta as soon as I did after getting back from the coolest Toy Convention in the world is that I was racing my worsening eyesight.
To be honest, that’s just a temporary inconvenience. I’m excited at the prospect of cataract surgery. For the first time in my life, I will be free of astigmatism. My vision may even be corrected to better than 20/20. I will still need glasses to correct the double-vision, but I’ll see things more clearly than ever. I will likely need glasses for reading, and that will be an adjustment, but it’s nothing compared to the adjustments I’d made before my diagnosis.
Through all of this I have managed at least one post per day in PopCult, though admittedly, sometimes it’s just me plugging my internet radio station, The AIR, but it is still more than any other blogger in town, except for Mike Casazza, who does a great job covering WVU Sports here at the Gazette-Mail.
I have also been running The AIR since last July. It’s fun, and you don’t need to strain your eyes to edit audio, so it’s cool that I’ve been able to transform Radio Free Charleston back into a radio program so I can keep doing my part to shine the spotlight on our local music scene. I’m also having a blast with our other programs, which help make The AIR into my vision of what a radio station should be. The freedom of internet radio is making it one of the most fun projects I’ve ever worked on.
I haven’t been going out to as many shows as I want. Like I explained before, I’m not driving at night, and Mrs. PopCulteer works weekdays, so that limits us a bit. Hopefully, I’ll be able to make up for lost time later this summer.
So things are great, overall. There have been minor drawbacks due to the Prednisone, but the best news for me is that I am being weaned off of it, and should be supplemental-steroid-free by June.
That’s wonderful, because I am more optimistic about my future than I have been in years. I love being able to travel with my wife. I’m looking forward to reviving the video version of RFC, hopefully in time for our eleventh anniversary. I have a lot of things I want to do in terms of sculpting and painting that I am once again physically able to pull off.
Life is good. I’m going to be able to go places and do things, and the plan is that I’ll tell you all about them here in PopCult.