“My Story… ” Monday: The Worst Day

 

 

I immediately started taking the anti-convulsant medication. By the second dose, a little wave of relief swept in: I didn’t feel the sharp, shock-like pains across my face for about an hour and a half.

 

I was thrilled!

 

Sadly, when they came back, they came with a vengeance.

 

I took the anti-depressant that was supposed to help me sleep, with high hopes. But I did not sleep well. The pain was still crippling me.

 

Over the next couple of days, I went back and forth via email with my neurologist and he continued to up the amount and frequency of my dose. I followed his directions and documented everything I felt; I was still struggling a ton.

 

Looking back on it now, I realize that the medications were actually doing a fabulous job of controlling the sharp nerve pains across my face but, by this time, a new pain had grown to such an excruciating level that I couldn’t escape it. My jaw positively burned and throbbed and it never, ever let up.

 

I was so very miserable. I wept to my husband, dismayed at what a horrible wife and mother I was becoming. Every single day was torture for me and I struggled to keep my head afloat. Somehow, I got meals cooked, homework done, and laundry put away, but my house looked horrific and I confess to letting the kids watch far more TV than I ever allow.

 

I was just trying to survive.

 

Wednesday morning dawned and, again, I took an increased dose. The doctor was still trying to figure out how to make this pain go away. He seemed confident that he could; I was trying to keep my hopes up.

 

It was the worst day.

 

While I battled never-ending pain, I fretted as someone very near in my family went in for surgery. I was trying to email and text my siblings and figure out how it was all going and my head was a mess.

 

I took G. to speech and, as I chatted with a teacher I knew, I suddenly lost my words. I simply couldn’t find and form the word I wanted to say. As someone who is pretty much always composed and loquacious (<– that really just means “talkative”, but it’s the first word I thought of– that’s just an indication of how my brain USUALLY works) , it was a mortifying feeling.

 

I later wrote to my husband:

 

The surgery apparently went well, as far as we know. We’re waiting for him to be awake in recovery. They said if everything looked good, he could go home already tomorrow!
I really could use some decent sleep. Blah. :( Ah, well, at least I’m getting a couple hours… that’s better than none! #positivethinking
This increased dose of medicine isn’t making a sizable difference in my pain, but it’s messing with my head. I feel “cloudy”, like I can’t focus or come up with the words I’m looking for. I think that’s a common side effect that usually passes as you get used to it, but it’s kind of cruddy!
Well… here’s hoping that we get this all figured out and I can stop being a miserable excuse for a wife and mother soon. :(

 

He wrote back, kind and reassuring:

 

Sorry the new dose isn’t helping more, just making you more cloudy. ¬†Hopefully your neurologist will be able to find a good dose for you and we will find more out as these tests come in. ¬†You are more than a good wife and mother, I stayed curled up in bed with less pain than this.

 

But I felt awful. I simply could not escape the pain that felt like it was coming from deep inside the side of my face and just pounded, pounded, pounded. Added to that, I was running a fever. When I questioned that, I was told that fevers and increased blood pressure can be a pain response.

 

Great.

 

That night, I tossed and turned and finally gave up. I rose, showered, and got ready for the day– I had C’s IEP meeting at the school that morning.

 

Something new had happened, though.

 

There was a lump on the roof of my mouth.

 

It felt huge to me, but sometimes things in your mouth feel bigger than they really are, in my experience, so I asked my husband if he could see it. He could. He thought it looked huge, too.

 

Honestly, and I don’t mean to be graphic, it was so large that it impeded my swallowing and made speech nearly impossible. I could talk, a little, but I was very hard to understand.

 

He decided that he’d better call his work and go with me to the IEP, at least, and I called the neurologist to leave a message– one of the side-effects of the anti-convulsant was “mouth sores” and I needed to find out what was happening.

 

I went to the meeting. I greeted the teachers, therapists, and administrators. I swallowed my pride and communicated concerns with my very impeded speech.

 

And I waited for the doctor’s phone call.
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