and I just cant hide it......
(sings song in my head)
I feel good. "good" right now, is great. I have felt like I was dying the last few weeks. So this morning when my best friend asked how I was and I found myself responding with "good" I got all warm and tingly inside!
If i can make it through the whole day today without getting sick, I will have got an entire week without vomiting. The nausea is still there, but at least I'm holding it in. Trust me- after the last month, this is a big milestone.
Now, for the big secret. No- I am not pregnant. If that was your first thought then you didn't read my post from a couple days ago when I said AF started!
This Sunday I will have been off Tegretol for 3 weeks. I have been holding this secret in from everyone except Wes.
I didn't tell anyone else because all the people who know what I have and why I'm on Tegretol would freak the eff out if I told them I wasn't taking my meds.
When I first started getting sick, we thought (because the Dr thought) that it was because of the Tegretol. We thought we would play it safe and go ahead and come off of it until we knew if it was causing the sickness. After the blood work showed that my liver/kidney levels were perfectly normal we knew it wasn't the Tegretol.
Now I am supposed to be on it.
This is the 4th different medication Ive been on for Trigeminal Neuralgia. It sucks.
After we saw that my levels were normal and that I could go back on the Tegretol I devised a plan. My whole thought process was this.
I cant take Tegretol when I'm pregnant. Dr says I can but its not without its risks...I wont take that chance. I refuse to have my child come out with some sort of disability and have to live the rest of my life feeling the guilt that it was because I didn't stop taking the Category D medication.
Wont do it.
Tegretol makes me tired, lazy. I hate that. I hate when Wes says "Lets go to the springs!" and Id rather sleep. He either stays at the house, bored, or he goes without me. He wants me there with him.
Tegretol makes me gain weight. Sure, I haven't been working out (read: Tegretol makes me tired and lazy) but the medication itself says right on the bottle that it causes weight gain. So Tegretol makes me feel fat. Unlike my usual 125 pound self.
The only problem is that I NEED Tegretol. It is what controls my Trigeminal Neuralgia. It is what keeps the nerve from swelling, which keeps it from pressing against the blood vessel which prevents the pain from coming. Most of the time. Its not fool proof, and like clockwork, every 3-4 months the pain comes back for a few weeks. If you've never read up on TN, you cant imagine the pain I'm talking about.
If you want to know what it feels like- go find your hammer, have someone slam it into the side of you face- right about cheekbone level- several times. Then tell me how you feel. Probably not good. I spend weeks like this. The Tegretol is supposed to control it to a degree.
BUT.
How do I REALLY know that its the Tegretol that keeps it away for a few months?
How do I REALLY know its what keeps the pain more towards a "bearable with vicodin" level instead of the "I want to die" level.
I don't.
So.
I didn't go back on it after the Dr said that it wasn't the meds. And you know what? My face feels fine.
The pain didn't come back.
I'm starting to feel more like myself.
I went to the springs last Saturday with Wes and our friends, and had fun.
I feel good.
So, hopefully this isn't just a big fluke, and hopefully I can actually survive without the Tegretol.
The medical alert bracelet that I have to wear because of it screams "Something is wrong with me, ask me about it." I'm ready to take it off, and leave it off.
And get pregnant and not have to worry myself to death about what might happen when I have to force myself to come off the Tegretol.
Because I already know.
I feel good.
Our New Normal
10 years ago




Oh, that's sounds great! I hope that it isn't a fluke and you can move on and keep feeling good!! I'm hoping for you!!
ReplyDeleteOh and your description about bashing a hammer against your face totally made me cringe. You poor thing, I hope you never have that pain again!
ReplyDeleteIt's honestly the best way to decsribe the pain! What's awful is if you google "suicide disease" the results will be what I have- Trigeminal Neuralgia- because a lot of people who have it just cant stand the pain anymore. Its awful. But Im surviving it.
ReplyDelete