Monday November 15th 10pm.
Opening night showing of Twilight.
Yes, I was there. “Team Edward” t-shirt and all.
I stumbled upon the Twilight series mostly by accident. I was traveling (a lot) for my past job and was sitting next to a same aged professional girl also on a business trip on a plane from pitt to Chicago. She was reading Twilight. She insisted I must get the book, its a great plane read.
Plus, I was spending my summers speaking to 1000s of youth; what better way to convince them that I was cool than to be up on the popular twilight vampire series.
I was hooked.
For some reason or another, I was always traveling or away on opening nights of the movies. So, I’d go alone. Me, myself, and 200 plus screaming girls at any site of Jacob taking of his shirt (fortunately this last one only had one scene).
This year, while I was surrounded by many supportive loves that would have gladly sacrificed two hours for the movie, I decided to keep the tradition and go alone. My dr’s note paid off, wheelie and I got in first and I must say, it was my favorite of the series.
It takes about 20 minutes to get home from this particular theater and while driving home, I was contemplating the post I could write about “the end of the saga”.
About how I started the Twilight saga in the beginning of my professional career, traveling all over the country. Intertwined in the series were a few moves, a MBA, an up the ladder job, a love, etc. I essentially grew with the series.
And as the saga ended, I felt like it was also the end of a chapter for me. Granted, I had no idea of what my future would bring (wouldnt we all love an Alice Cullen as a sister for future telling?). But I was feeling stable. Just like the movie ended.
So that was what November 15th’s post was going to be about.
But then I got home. I was getting ready for bed and started to feel sick. My breathing was heavy, my chest hurt and my throat started to close.
Perhaps a panic attack. Maybe Edward was just too much for me.
So I laid down, relaxed. No change.
After about an hour, I called a nurse, explained my symptoms and was advised to go to the ER. (May I mention, there are probably 10 Urgent Cares within 5 mile radius…none of them 24 hours).
So I wouldnt have to explain any of my past, I decided to drive to the UPMC that has all my history. Which meant I drove to the city, at 2am, yes, in my condition, solo.
I really thought it was strep throat. That I’d be home by 4:30 or so, before my parents would wake up, and it wouldnt be a big deal.
Well, 4:30am rolled around and it wasnt strep. And I wasnt leaving.
Text message: “Mom, Dad….dont panic……but…..”
The ER neurologist was very realistic (unfortunately, not a Dr. Cullen though). He saw my past, he saw my “love” (sarcasm) for hospitals, he saw that I was pretty much “healthy” which meant this was most likely due to MS and so he got real with me.
Two options: be admitted, get the tests done that day perhaps (it was a Friday…), wait through the weekend, then go forward Monday. Or (I liked the OR), go home for the weekend and get the MRI done Monday, coming back if I were to get worse.
Home I went. It was an ugly weekend. Not fun.
But my sister came home and that was exciting!
Monday had a dr visit early in the am and then the long MRI in the evening. A lovely day (sarcasm).
Wednesday was my birthday (yay!!) and my family and friends did a fabulous job of making it a great celebration of my life.
Thursday was Thanksgiving and very lovely! All the family was home and we had a very nice little break. I hope you and yours had a lovely Thanksgiving as well!
So now we are at following Monday. I get a call from the dr’s office. Whenever they call, you know its not the most fabulous news.
As always, good and bad news.
Good news: no new lesions!! Yay!!!
Bad news: one of my old lesions has flared up. This has happened about 3 times since first being diagnosed. Hence these “flare-ups” and pseudo-relapses I have.
What does this news mean?
Basically that the disease management drug I was injecting myself with 3 days a week wasnt doing its job. (Why cant a medicine work like its suppose to, just once?!)
So new plan: change medicine. I will be moving to a one month infusion (positive) of the top of the line MS drug. It has a higher percentage of helping MS cases (especially those with lesions on the brain) but also has severe side effects (I will be monitored closely).
The heartbreaking thing about this change is, well first, the unfortunate realization that the 8 months of painful 3 times a week injections didnt work.
The second, this is the knot at the end of the rope. If it doesnt work, there really isnt anything else on the market that “is better”.
So we do what we always do: we hope that it works, we hope that continued research is done and we hope for a cure.
Twilight Saga ended. But unfortunately my MS saga only gets to continue.
So thats the update.
I had a moment of “why am I telling the whole world of my MS health story? Its kinda awkward” the other day. The awkward part is true. The answer to the question though really lies in three areas:
1. Therapeutic for me
2. An easy way to update a plethora of people in one easy place
3. To hopefully generate awareness of MS, how it affects lives and why there is such a need for research and a cure
I thank you, for reading. For caring. For hoping.
Unfortunately we all cannot be vampires or wolves and live forever.
You get a birth date, a dash, and a death date.
The dash, thats life. Thats you. Thats your legacy. Thats what you did for yourself, for your neighbor, for the world. Something so small - yet so profound.
So while I’m living my -, I hope you join me in really living yours. Hell, if I can still find some freaking sparkle after this journey (granted some others have it so much worse) than so can you.
Make sure you are living your - to the best of your ability. Especially with the Christmas, holidays and New Year coming…make it a good chapter of your -.
Soooooo. Enough cheese-ball for one night? I believe so. (:
Here’s to HOPE as always. Here’s to retiring the Team Edward shirt. Here’s to continuing the chronicles of the MS sparkler.
Love always, Eliz