Multiple sclerosis, Struggles

Registries and a new drug

This week I signed up on a registry.

Not quite the kind I had hoped to do. There are no bottles or strollers or baby accoutrements on this one.

This registry is for women who were on Betaseron and got pregnant.

I had almost put the whole experience in a box and tucked it in a far corner of my heart where it wouldn’t be ever-present.

And then came the flood of questions. When were you pregnant? When did you get off treatment? How long were you on treatment? When did you miscarry?

I’m so sorry, says the voice on the other end of the phone. Is there a flowchart for what to tell people in my situation? Is it written down somewhere, like in Up in the Air?

Thank you. Is this the appropriate response?

My body is still in limbo, nearly two months later — an exacerbation that has been off and on since June, and still no cycle to speak of.

I don’t know how to heal from this hell, other than to keep going. Isn’t that what Churchill said?

I start a new drug this week, Copaxone. It’s a daily shot, but with not nearly the side effects of my previous treatment.

I just hope it works. I had a nightmare that I had a severe allergic reaction to it. No anxiety here.

It’s been a reflective week. I struggled with pangs of longing and bitterness, especially seeing all of the families around me on the first day of school. I wonder if that will ever be me.







4 thoughts on “Registries and a new drug”

  1. I have a friend who also had a miscarriage due to her MS treatment. (You probably know who.) She did get pregnant again. That said, am crossing my fingers that this treatment is better suited for you!

  2. You’re really hanging strong through seriously crappy times. I’m here for you if there’s anything I can do!

  3. I think you’re going to be pleased with the new treatment. I’m finding it pretty easy to deal with (knock on wood.) I know you have had such a rough road and you really are my hero because of the way you’re handling all of the obstacles. Sending lots of HUGS and good thoughts your way!! And as always, I’m praying for you chicka.

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