Stop the Rollercoaster! We Wanna get Off!

Rollercoasters have never been on my to-do list…As a kid I used to get motion sickness so badly that I’d just make myself go to sleep whenever I’d get in a car.  I can’t imagine paying big bucks and waiting hours in line to have one of these torture machines force you to feel light-headed, that your stomach dropped out through the bottoms of your feet, or to make your heart race so hard that your neighbor can hear your pulse.  My kids love them, of course.

The last couple months Jenna and I have been riding a rollercoaster – The Lyme-inator – and we want off!!!!  We’ve been trying to balance her seizure meds to help with the narcolepsy and accompanying seizures.  But then her IV meds made her a bit too toxic, so we took her off them for a couple of weeks.  The Lyme issues got worse, so we tried another week of meds and she began to feel better after the initial nausea subsided.  So much better, in fact, that she shocked all of us by telling us that she wanted to compete in the Miss Morgan County pageant.  She got mad at me at first because I was so incredulous that I laughed; I just couldn’t help thinking, “How do you think you can possibly do this when most days there are times you can’t walk from one end of the house to the other without passing out on the floor?!”

When Jenna was really sick, I vowed to do anything that would help her feel better, even if it could affect her recovery.  She was determined to do this pageant, so we signed her up.  I asked her why she decided to do a pageant, since she’d never done one before.  Her answer?  “If I win, I can use this title as a platform to help spread the word about Lyme.”  How was I to say no to that???

She came home from the first practice elated because the director figured out a way to let her do the first number in her wheelchair.  The dance involved a lot of jumping and dropping on the floor that Jenna just couldn’t do.  Day two of practice she came home in tears because she was just hurting so badly.  I made her promise me then that if she didn’t feel up to doing the pageant that she would back out, even if it was just an hour before the curtain went up.  Jenna made it through the final walk-through by sheer willpower.  She literally crumbled into a ball the minute her car door closed and I began to think that I’d made a huge mistake by allowing her to get involved.

The day of the pageant rolled around and I spent a good part of the day trying to convince Jenna to rest.  Her adrenalin kept her pumped, though, and I started worrying that it would run out while she was on stage.  Thankfully the pageant director understood that I needed to be backstage with her, not only in case she passed out, but even to help with outfit changes, etc. since the Lyme has really affected all of her motor skills.

You would never have known this young woman had Lyme or any other issues when she was on that stage.  She put on a mask  that glowed with excitement and somehow got her legs to walk confidently in high heels.  Backstage, between events, she let her guard down a little bit and you could tell the evening was taking its toll.  Jenna strutted her stuff and had the audience laughing at the monologue she wrote and performed. 

After Jenna was crowned Miss Morgan County 2011, it was like she turned into a huge balloon with a tiny leak.  Anyone standing next to her had to help hold her up.  When she had her picture taken with me, she gave me a big hug and I felt her hanging on for dear life.  Jenna talked a mile a minute on the way home, I think because she knew if she stopped she’d hit bottom.

Sunday was pretty much what we expected it to be…Jenna was exhausted and her body couldn’t hold back the seizures that just rolled through her continuously.  Monday was a bit better, but yesterday she hit rock bottom.  Her speech was already affected when she woke up and she narc’d out at least every ten minutes, sometimes more.  The guilt began to wash over me; I was the adult – what was I thinking when I let her do this pageant?!   I kept hoping that each time she’d wake up, she be a little bit more clear, a little bit more like Jenna.  She finally crashed around 8PM and I prayed that she’d get a restful sleep.

Hopefully Jenna will have a better day today.  Because we’re both ready to be done with this roller coaster…it seems like it’s going on forever and you can never tell what’s coming up next.  We’ve already had a few too many surprise curves and stomach-droppers.  But, like it or not, we won’t give up until this ride from hell is over.  The Lyme-inator has nothing on my Lyme Warrior Princess and her Momma.  So, watch out folks – Jenna the Lyme Warrior Princess has a sash and she’s going to use it!


2 Responses so far »

  1. 1

    Judith Baker said,

    You go girls!!! I am so proud of both of you.

  2. 2

    Gina Mellott said,

    You are both inspirations to those around you. I couldn’t help thinking during the pageant about how proud you as a mom must be at the sheer determination and spirit of Jenna for where she has been and what she has accomplished. She truly is a lyme warrior princess! Your words are already reaching those of us in the community about the devastating effects of lyme and the need to treat appropriately. So you tell that girl to wear the sash and tiara proudly and fight the lyme war because the princess army is behind her!

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