Blog
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.
I suffer from depression, most likely bipolar depression. I'm on medication for it and it works failry well. Minus some side effects from the medication, I'm pretty stable. For some random reason, I just got super sad, to the point of crying because I feel so alone.
Another Gaucher mutant sister from one of my groups asked what age we were all diagnosed and how Gaucher's has affected us mentally. She has been struggling with the disease for a very long time, as well as other family issues. I shared my story with her in hopes that she could see that even though we live with this thunderstorm cloud over our head, life is still worth living. Here's my back story.
Due to the change in insurance, and my doctor not having a genal type test for me, I haven't received my infusion since January 10th. That dose was covered by my last insurance, thankfully. I was told there wasn't enough proof that I needed VPriv, so Blue Cross Blue Shield denied my VPriv. My options were to have my old doctor send over my medical records or retake the test. I'm currently waiting for a call back to see if any of my old doctors have record of this test.