My disease has yet again forced its way into the forefront of my day-to-day. While Multiple Sclerosis impacts nearly every aspect of my life, I do all I can to live as if I don’t have it. I am happiest when life is cruising along with little to no reminder of my condition. I relish the days when I can glance at my handicap placard, then park in the space as far from my destination as possible. I am delighted when the topic of my having an autoimmune disease comes up and acquaintances say they had no idea I was sick.
But then there are times like now, when I have to actively acknowledge my disease. After my last MRI I was told by my neurologist that I had failed NEDA (no evidence of disease activity). Some neurologists choose to pursue a course of treatment that attempts to keep a patient from showing any sign of their disease. Since my disease is aggressive – when active it has debilitating results – this is the course my neurologist and I agreed on.
In the Spring when I went in for my quarterly check up, I wasn’t feeling too bad, I was actually rather proud of all that I was weathering, a much too busy life, a home-remodel, and that I had made it through the holidays without a flare-up. So imagine my chagrin when I was informed that I had active lesion activity in my brain. No one wants to hear that they have failed, at anything, especially not when it is your physiological well-being at stake.
Now the decision has been made. The options I had were not terribly attractive, but disease treatment options rarely are. I looked at what treatments were available to me, with the help of my ever-supportive husband we did as much research as was possible, I exhausted my dear hubby with debate, weighed the pros and cons. And finally landed on the what appeared to be the best move for me. To stop my old, and apparently less than effective, medication, and start a new one.
So far the switch hasn’t been too bad. There was a lot of preliminary drama; testing, scheduling snafus, a fungal infection that threatened to derail the whole thing. I was more nervous than I expected about the infusion. But all in all it hasn’t been too bad, and now I wait… I’ll never know for sure if this drug is working, I’ll only know if it isn’t.
Now I look forward to working my way back to my normal. It may be a new normal, I forever have to prepare myself for the possibility that my current normal and future normal won’t be what my normal was in the past; that I may need to rest more, that I may not have as much energy, or be able to run as far, or my hand may still refuse to cooperate. But that is how life is, disease or no disease. I revel in the good moments, bask in the times I feel strong and healthy, run as far and as fast as I am able. And when I can’t do what I think I should or feel weaker than I would like, I will look at it as a challenge, as a chance to adjust what needs to be adjusted and fight to get where I want to be! It’s a crazy road, and I am learning to love the journey.
