I haven’t posted in a while- mainly because I haven’t known really what to say. But I am not okay.
I saw a new neurologist the other day. He was great. Confirmed that I do 100% have Trigeminal Neuralgia (TN). He said to keep all my meds the same. Ok- awesome.
Well I get home and realize I’m almost out of my gabapentin (3200mg a day), which is an extremely high dose. I won’t have enough to get me through the weekend. Panic starts.
I called them and the front office lady said to me, “because you didn’t ask during your appointment, you’ll have to wait 7 weeks until your next appointment”.
So here I am, about to be without my medication. I am obviously worried about the pain but I’m mostly worried about how it’ll affect me stopping cold turkey. I know withdrawal from it can cause seizures, among other things.
So I’m freaking out. I can barely handle an hour past my medicine time, much seven weeks.
Long story short, the pharmacy gave me an emergency supply. Thank goodness.
But it just made me realize how much Trigeminal Neuralgia affects my life. How much going without my meds affect my life.
How much TN has honestly ruined it.
It’s shown me how much I grieve the life I had before I had to worry about if I had enough meds to get me through the day, and worrying about dealing with receptionists that do not understand what a TN patient struggles with.
I struggle with asking why God gave me this. Why He chose me. Why I have to endure this, and what I am suppose to do with it all.
I am just struggling a lot. And unless you yourself have TN, you will honestly never understand this pain.
The doctors office called today, 4 days later, saying they were sending my medicine. FOUR days. Which to some may be nothing, but to someone with a neurological condition that doctors label the “suicide disease”, it’s frustrating. Because even the doctors office doesn’t understand how bad the pain is.
I am tired. Tired of being in pain. Simply tired.