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Tonight's cocktail includes Cerdelga for Gaucher's, Tylenol for headache, Levothyroxine for Hypothyroidism, Celebrex for arthritis, Viibryd for depression, Doxycycline for acne, and B-12 for added flavor.

Yesterday, September 19, 2016, was my last infusion for Gaucher’s disease. Today I started the new pill form of treatment - Cerdelga.

Me today:

Hey [pharmacy contact],

I'm due today and I never received my shipment. I don't have any text messages saying it was shipped either, but I don't know if my cell phone service didn't send one through, or I just never got one. Can you please confirm that it was sent out?

Thank you.

It's been 2 weeks since my last failed infusion where I was only able to get half my dose, and was forced to basically throw away almost $10,000 worth of medication. I am dead tired less than 2 hours after I wake up in the morning. I had to take a nap on Christmas while I had family over because I was so tired. I had to take another nap again yesterday because I just couldn't function. It's like taking a sleeping pill,. then fighting to stay awake. I swear, if I hear "maybe it's in your head" or "you need to go to bed earlier" one more fucking time, I'm going to lose my shit.

I don't know what pisses me off more: The fact that this is the second infusion pump to stop pumping mid infusion with the same lot number, or the fact that no one got back to me the first time about what to do if it happens again, or that I've been sitting here with a needle in my chest waiting to finish being infused with $15,000 of water before I can go to bed.

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