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9/25/18: So tired of health insurance. My doctor retired, so I had to find a new doctor. They can't get me in until the end of October. My prior authorization has expired. I have 5 days of medication left. Insurance won't allow the medication to be shipped until I get a prior authorization. So now I have to see if my old doctor's office will write up a PA for me without having me drive 4 hours to see them. I can handle everything about my diseases except dealing with this nonsense. This is what makes me depressed.

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.

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