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.

I've been on Lamictal for a couple years, on a low dose. It really helped with my depression, but it causes me to be confused, forgetful, foggy. My doctor said to cut it in half and take half a pill a day. I've been on that for a couple months, but noticed that my mood has been starting to rollercoaster. I've been getting irritated and agitated more frequently. I decided to go back to a whole pill. I did that for a few days and the fog and confusion hit me. Mike even asked me "are you ok?" because I forgot that we put the items we bought in the trunk not 5 minutes prior. I get foggy when driving, which is the most problematic, for obvious reasons. How would you explain to a police officer that you were in a brain fog and caused an accident? They'd lock you up for a DUI without being intoxicated.

We use cookies to give you the best online experience. By using our website you agree to our use of cookies in accordance with our cookie policy.