“Many New Lesions”

FlowersAlgernon“I haven’t counted, but there are many.”

So there’s that. I’ve been off Gilenya for 4-5 months, and found out the hardest possible way that it was probably working. At least, that’s what “many new lesions” after less than half a year off taking a DMD (Disease Modifying Drug) means to me (and to my Neurologist). It’s not all my fault that this much time has lapsed, but I do take responsibility for not making this my primary life issue. I’ll pay for that now. Nobody who, since November, mishandled my applications or appointments will.

“I don’t feel like I’m as smart as I used to be.”

“Yeah.” [doctor nods in confirmation]

Oh god I never wrote that novel and I used to think I’d be happier if I wasn’t so smart and holy crap this is worse than…

worse than what? Death? Nothing is worse than that and I could/would never do it.*

It’s not abnormal to feel a pang resembling a life’s end when your dampening is corroborated… because with it viewed as an escape then no one — including you — would have to watch the inexplicable descent of a former academic elitist into a Flowers-for-Algernon-stlye nightmare.

  • At least, I am grateful MS proves again that it is why I feel like a crazy person for thinking I’m just… not as there as I used to be. For being valid, documented proof that I started out this stupid disease a better person.
  • At least I have five days of IV-SM in my super-near future.
  • At least in less than a week I will see the ophthalmologist, then I will schedule another first dose test to restart Gilenya.
  • At least my neurologist assured me that this is not the beginning of Secondary Progressive.

    Yes, I'm being driven like Miss Daisy.

    It barely looks like oral herpes now!

  • At least I have a family, wife, and friends who love me… and most, if not all, of them are smart enough to know it’s not just that I fooled everyone into believing I was an intellectual.
  • At least the doctor’s news bought me the right to choose lunch. I picked Indian and it was good.
  • At least my new facial scar is healing nicely.
  • At least Livedo Reticularis might just be caused by MS.

 

 

*DEATH IS NOT AN ESCAPE (but not talking about your feelings is the opposite thereof). I’ve been through suicidal ideations enough times in life and as a counselor (crisis/suicide hotline volunteer) to know it’s a red flag and I will be seeing a neuropsychiatrist soon. Until then, it is my responsibility not to punish myself (brain lesions don’t come from an angry god) but to breathe and do what’s needed to fix as much as medically possible. And medicine is really good at this particular kind of thing.

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  1. “brain lesions don’t come from an angry god” <– I needed reminding of this today. I actually asked Adam if I'd done something bad I didn't know about.. Instead of IV-SM, my doctor ordered a THIRD medrol dose pack. I'm feelin *rough* today.

  2. I definitely know what it’s like to not feel as smart as I used to. I don’t feel as smart, I’m not a quick thinker anymore, my memory has a life of its own, and I don’t learn new things as fast as I used to. Sometimes I tell myself that I’m just too tired or that I’m not twenty anymore, but it’s been a blow to my self-esteem and I’m still trying to figure out what I can do about it.

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