Well where do I start? It’s been quite a while since I wrote anything here. It was also quite a year last year. So let’s begin with the basics.
The family is doing good. The oldest will turn 8 in March. He is halfway done with 2nd grade and he already ready for it to be over with. Have to say, I’m right there with him. It hasn’t been his best year in school but we are making it through without too much problem. The youngest is now 2 as of November. His favorite word is “No”. His favorite food is fries and his use of both of those words is enough to drive you crazy! “Are you ready for bed?” “No”. “Is that a good banana?” “No” as he is shoving it in his mouth as fast as he can. If he sees anywhere to eat, “I want fries”. “Are you hungry?” “No. I want fries”. This is daily. Haha My wife is doing good! Still the super woman that she has always been, my best friend and the love of my life. We just celebrated 16 years of marriage last month.
Now as far as MS is concerned, it was a pretty good and mostly uneventful year up until about the end of November. I started noticing that my right eye was getting blurry and had pain when I would look to either side. I’ve experienced the pain part before when I’ve dealt with optic neuritis but the blurred vision was new to me. I had been sick at the time this started with a pretty severe cold that left me without a voice for about a week or a little more so when I called Dr Okai, my MS specialist, about it, her suggestion was to go see my family doctor about the cold and get that under control cause sometimes they could cause symptoms to become worse. Ideally, once the cold was taken care of, the flare up of MS symptoms would subside. Yeah…that didn’t happen. It actually was getting worse. Not only my vision in that eye blurry, it was now pretty much gone. I had a big black area in the center of my vision. I could see a little around the edges but that did me no good. Dr. Okai called back about a week later to check on me and when I told her that it was actually worse, I got set up for another round of iv steroids. Three days of good ole Solumedrol.
That was the week of Thanksgiving. So I ended up with one dose scheduled for the day before Thanksgiving and the other two days scheduled for the week after Thanksgiving due to the offices being closed for the holiday. A scheduling choice that I questioned at the time but figured the sooner I could get at least some of the steroid in me, the better. But before it was all said and done I ended up getting three days after the holidays too. They told me that I had only received half a dose the day before the holiday and it was supposed to be three consecutive days that I received the treatment so I had to come back for one more day.
Well it’s now been a full month since then and my vision is better but not completely back to normal. The black hole that was the center of my vision is gone. I can see much better out of that eye but it’s still pretty blurry. If I had to rely on that eye alone, I’d be screwed. But it being better is still good. Right? I keep trying to look at it as any improvement is good improvement. So I’m thankful for that.
Right before Christmas I made a quick trip to Dallas to Dr. Okai for a check up. She suggested a medicine change since she didn’t like that I have had 2 flares in as many years. She felt that it should be much lower than that so it may be time to change. I’m not just real sure where I stand on changing at the moment cause I just keep thinking about where I was physically before starting Tysabri and where I am now. The two are still as different night and day. Even with the eye issue I’m currently having. So I’m kinda hesitant to change (not a big fan of change) but feel that she hasn’t led me wrong yet so I’m trying to trust her.
She suggested Lemtrada as the medication I change to but I know nothing about it so I’m trying to do my research on it before I go see her again in June and compile my list of questions for her before jumping in to something blindly. I worry about how it does when switching to it from Tysabri with the whole PML risk. I have heard that it pretty much shuts down your immune system. So how would that work with one child in public school bringing home all kinds of illnesses and the other in daycare bringing home every germ imaginable. There’s just so much running through my head at the moment that it’s hard to concentrate on it too much but those are a couple of the big questions I have right now. I’m sure others will surface as I get deeper into it. Any advice anyone could give is greatly appreciated.
Well that was a glazed over version on my life this past year. For the most part, it’s good! Wouldn’t have it any other way!
Thanks for reading!