He was diagnosed in December 2004. If you know how old our daughter is, then perhaps you realize that this huge diagnosis came when she was not even quite 5 months old. So in a way, that was one of the best years of my life, having my daughter…but also one of the worst years of my life, having my husband be diagnosed with something so life changing. I very clearly remember the day we found out…he was being all stoic and I was falling to the floor in tears thinking we’d been handed a death sentence.
The type of MS that he has is called Relapsing-Remitting MS (RRMS). (Contrary to what my MIL still believes…the forms of MS are not stage 1, stage 2, and so on.) The majority of the time, he is fine. It’s not like you can look at him and tell anything is wrong. There are days when he hurts, and has to use a cane to walk. Thankfully, those days come fewer and far between in recent years. When he was first diagnosed, I learned to dread summers…heat affected him so badly. He was always exhausted and in pain. That seems to be a little better now, although I don’t know if it’s something he’s gotten used to or if he’s finally learned to take it a little easier during that time of the year.
I’ve had a number of mornings when I woke up to him laying stock still in bed, his face scrunched up, telling me he can’t move. On those days, I tell the kids that Daddy’s not feeling well and get them off to school, come home to half carry him to the bathroom and back to bed to wait for the neurology appointment we inevitably end up going to. He doesn’t sleep well at all (in fact, he’s having major insomnia now.) He’s battled depression and extreme mood swings, mostly in the beginning of all this. He’s had bouts of optic neuritis, severe vertigo, and relapses of pain and numbness…although I’m well aware that, in comparison to some people with MS, he’s lucky.
Our biggest battle since 2004 has been treatment options. Then, he was started on an every other day injection. It seemed to help, I suppose, but JB always hated it. He is terrified of needles. That said, I always thought he did fairly well giving himself the shots. There were some nights that I would give them to him, but 90% of the time, he did it. I eventually stopped worrying about whether he was taking his medication as he was supposed to. After all, I’m not his mother, right? He’s a big boy. He knows what he needs to do…at least that’s what I thought at the time.
It was the summer of 2008 when I learned he’d stopped taking his medication completely. If anybody remembers, that was our “off year” when we came extremely close to divorce, and the no medication admission actually came out during one of our many screaming matches. One of my stipulations on working things out was that he had to start the medication again…at the time, my way of thinking was, “I’m not going to sit around here and watch you get worse because you can’t handle a needle.” I’m not exactly proud of that, but my whole frame of mind was OFF at that time.
Anyhoo. He started the injections again. He stopped. He started. He stopped again. He never talked about it, and I didn’t bring it up. I knew he’d stopped because the refill calls weren’t matching up with the medication we still had in the cabinet (among other signs he thought I’d missed.) I got to the point where I would purposely lay his injection for the night on the bathroom counter. Then I made him come out and take the shot in front of me. It was truly childish.
There was eager talk a few years ago of starting a clinical trial for an oral medication. All the eagerness was his, not mine. He was desperate for something in non-needle form, but everything I read about the study scared the daylights out of me. Think: some side effects include nausea, vomiting, and DEATH. So no clinical trial.
Fast forward to here and now. About two months ago, JB’s regular neuro appointment had arrived. He’d made the decision that he was not taking the injection (at least, not the one he’d been prescribed for years) because it made him feel bad. I told him that was fine, but I threatened to ambush him at the neuro if he didn’t ask about other options. Thankfully, the neuro agreed that he definitely needed to be on something. The majority of the options out there are injectables…but there’s a new pill for treating MS that’s just been FDA approved…Gilenya. It very likely is the clinical trial drug that scared me so much; I don’t know. But we are reading LOTS of good things about it.
This new medication is MEGA EXPENSIVE. We almost wrote it off as a no can-do thing, but things are just falling into place financially and I just feel like this is what he’s supposed to be on. It’s like when we moved across the state away from everyone we have ever known in 2009…things just clicked together far too easily for it not to be in God’s plan.
So we have been slowly working towards this new pill for about two months. First, he had to go completely off his original medication. Yeah, not a problem. Then there’s a series of tests to get done…baseline labs, baseline EKG, eye exams, etc. Well, we’ve done all that. The ball’s in their court now.
The office is trying to get all the patients wanting to start this medication to start at the same time (there’s 5 of them) because the first dose monitoring time? It’s 6 hours, mandatory, at the office. They say it’s to keep the patients from getting bored while they are stuck there all day…and sure, it might help. But I’m sure it’s a little about convenience for the office staff, too. The frustrating thing for me is, we’ve done our part. We got all his tests done, so we’re sittin’ on go here. I don’t want it to end up being mid March before JB’s able to start this medication because one of the other four people can’t get all their stuff done.
But I’m getting very frustrated. My frustration level shot up about 10 notches today because the neuro’s office called…so I got excited thinking this was it! They are scheduling his start dose! But no…they were actually calling to remind him to follow up his eye exam in 6 months. Bah. In the meantime, I feel like we’re just twiddling our thumbs waiting on a relapse.
Patience is not a virtue that I was born with!
[small aside here….do you guys get my comment replies? I’ve been replying directly to the comments you leave, but it occurred to me the other day that I’m not using a plugin anymore to make it go straight to you when I reply.]