Today I had my monthly infusion. It still feels odd, sitting in a room with several others, watching medicine slowly drip into my veins. After seven months, you’d think I’d be used to this procedure.
Three years ago, I swore I’d never take Tysabri because of the risk factors.
Yeah, about that…
I never know what to expect: the people I’ll meet (although lately it’s mostly been the same group), the condition everyone is in, or how I’ll feel before, during, and after the procedure.
Today I woke exhausted, compounded by the need to take a shower. By the time I dressed and made myself somewhat presentable, I wondered how I’d make the drive to the infusion center 30 minutes away.
It’s strange how when exhausted, I have trouble communicating. My words are not nearly as fluid and I’m reminded of my shy, stuttering days, when I wished so desperately to think of something fun and witty to say.
I’m nearly five years into this magic carpet ride, and I want my money back.
I try so desperately to not become fearful. Some people are in a wheelchair and others are not — just another example of the variance of multiple sclerosis. Every month I leave wondering: What’s going to happen to me? Every person in that room was once where I am now: In the earlier stages of the disease.
I am reminded that I’m a member of a club I did not ask to join. I try to be cheery and pleasant, but on days like today, it’s so damn hard.
Everyone there is great. We have a camaraderie like no where else, but it’s still difficult.
It’s been 4.5 years, and I still can’t believe I have this disease. My body is changing in ways I never thought to imagine at such a young age — in ways that I have not prepared for mentally.
My next MRI is in March. I hope that this drug is working.
I struggle on days like today.
Tomorrow will be better.