I am still new to this whole deal...but this morning I felt a little sore but not bad. We've had a blizzard in Nebraska, so my daughter and I settled in and played cards, watched tv and broke out the dominoes. The "Princess Bride" came on, and she had never seen it, so we snuggled in to watch. I remembered my medicine EIGHT MINUTES later than I should have taken it--took it, turned to go back to the couch and BAM.
It felt like someone had taken a Louisville Slugger to the right side of my face. I just sat...and tried to breathe...as my seven year old daughter sat next to me...I couldn't speak, so I wrote for her to go get my pants and shirt (we were still in our jammies--a TRUE snow day!) in case the ibuporen didn't kick in and we had to go to the hospital. It took about an hour of agony, but the medicine kicked in and I was left with That Dull Ache...but it's such a relief compared to the horrific, maddening, tongue curling, face shocking and burning, I'll take The Dull Ache.
In a very meta sense, it was then I realized, "what kind of mother has to have her child fetch her clothes?!?" Oh yes, the kind of mother who's 7 year old writes a note during an attack (I've attached a photo)that says, "I hope you don't dye."
I just feel like...angry-frustrated-cheated--SCARED. And I want to know is it always like this? A perfect day almost ruined because of a STUPID nerve in my head?
Thank you, Kimberly. Just knowing someone else heard what I was saying helps. I am keeping my daughter in the loop and I let her know that people don't die from this--it's just a matter of mommy getting on the right medication and talking to my doctors.
I just hate that I had to have that talk with her. It's...I mean, she's such a super girl. I want to protect her....just, Thank you.
Awwww Helenann, I understand, I’m glad you’re feeling somewhat better pain wise…
Try as we may to protect our children, husbands, wives, family members etc we have to face the facts (sadly) that our dealing with TN will affect them.
Reassuring and explaining our pain/illness in an age appropriate manner as well as lots of hugs and kisses goes a long way to help everyone cope.
I posted a link above to a thread I wrote a few months ago…Emotional Side effects.
It’s so hard to see our children worry about us, and feel helpless…
I'm so sorry you had to have that kind of discussion with your daughter. I can relate. My son is 15 and even he gets upset when i'm having a bad pain day. He'll ask if i'm ok, and i'll write no, or shake my head no..and i can see the ...pain/sadness in his eyes. He's never asked me personally about it...but he's asked his dad if it's going to kill me, like a cancer does, and my husband had to explain it to him. His best friend even knows about it..and will ask me how i am when he comes over.
So you are not alone there....It's hard to not be the super parent. Some days, it's almost too much to just be human.
Also, i'm right there with you with taking the meds ON TIME. I know within minutes if i'm late. I obsess about it nowadays. My husband thinks i'm exaggerating when i say i must NOT be late...and i will start freaking out if it looks like i might be.
Oh, everyone...had another attack at 3am...still smarting from it. Going back to Dr. Allison today at 1050. BUT, the blessing is I didn't wake up my daughter and "Superman" with Christopher Reeve was on cable...so it was...painful, but it could have been worse. :)
I'm off work today, which I hate, but I can't stand in front of a class and speak when the right side of my face is exploding.
Bless you each for responding and/or reading....survival, one more day!
Oh I completely understand where you are coming from. You look fine, everything seems to be going just great and then out of nowhere it's like a Mack truck plowed in to your face and you can barely function. I could usually deal with what it did to me but the way it affected my family is what really made it hit home. There are going to be days when you can take your meds right down to the very second you're supposed to take them and it'll feel like you've taken nothing, then there will be other days where you feel like you've got nothing wrong. Just keep those better days in the front of your mind when you have a flare up. Have you looked in to surgery at all?
I can relate. I know that if I miss my scheduled dose I regret it. Sometimes though even if I take my dose on time I get a flare up.
This might have just been that, a flare up that happened at the time you were a little late for your pill.
I hope you are at least able to sleep.
