I like things in life that can be accounted for, explained. I like when there is a pattern to how things work and why things dont.
Which is why you can imagine having MS in the first place drives me bonkers just on the basis of not having any answers as to how, why, when, etc.
And that is what the past 4 months have consisted of. Dead ends and no answers.
I know I expressed that I was "sick" but looking back in hinesight as well as hearing from what others have told me, I might not have realized or have shared how sick I actually was.
There were days that I thought I was dying. There were days that I looked like death, eyes glazed over, gray skin (lets not even talk about my gray hairs). My sparkle had been lost, my energy gone, my zeal for overcoming obstacles with stubbornness went right out the window. I wasnt giving up; my body was literally shutting down.
At first it was thought that this all could be tied to my anti-body response to the Tysabri infusions. But after a dose of steroid injections and a round of plasma exchanges, while relief was found for a few days, I just kept tumbling downward.
There was a really bad night the end of May. I had gone to a Dave Matthews Band concert with my friend and had a great time; I was feeling good, smiley, happy. Then I came home and like hitting a brick wall, I lost it. It was probably the worst night of my life. I was afraid to sleep yet could do nothing except lay there, fighting my body to keep my eyes open. Mom and Dad took turns checking on me every hour and I think this was the night I dramatically proclaimed I was dying.
Yes, I am known to be Miss Drama Queen at times but in all seriousness, I really did feel it.
Cleveland Clinic came and went with no further answers or assistance. Each day was a struggle to find something, anything, that could offer relief.
In between the week at Cleveland and before going to rehab I remember lying on my floor, begging God and everyone in Heaven for help. It wasnt my first cry (I pray daily for help; I wouldnt be able to live The Sparkled Life without some Divine help) but it was desperate.
I was calling on everyone, every single person I could think of by name in Heaven: family members, friends, celebrities (Heath Ledger included), historians, past Presidents and artists, Saints, all of them. Asking them that unless they were preparing a welcome party for me that they send some heavenly help. Please
And this is where I get to insert a thank you to all those that prayed with me on this earth, because I know I wasnt the only one desperately praying.
Thank you so much, for your support and hope in your prayers.
At the end of the day, God decided to answer in the way asked and sent a little miracle. Ok, a BIG miracle. #lesbihonest (sorry had to...it just fit. #ifyou'veseenPitchPerfectyouundeerstand)
So I was in rehab and was hit with one of my disabling migraines. They come on so quick and so fast and are so annoying and so inconsiderate. I was lying in my hospital bed, ice on my head, my body trembling with what we thought was spasticity.
The doctors had put me on the most powerful drug for spasticity, with no change. Thinking outside the box, the attending doctor thought that perhaps this wasnt MS, that maybe this was something on top of the MS; and proceeded to call a brain doctor to evaluate.
Brain doctor came, examined, ordered a MRI (just the cure for a headache!) and then provided his thoughts: that this indeed was not spasticity but rather tremors, tremors resembling those of Parkinson's.
What?
Excuse me, Im only 26. Can you run that by me again?
MRI was run and showed no MS progress (a good sign for the MS in me) which furthered the theory that this wasnt MS related. Let's give Parkinson a try.
I was prescribed a Parkinson medicine and guess what? Within two weeks my tremors are controlled; I'm functioning again. Im walking again. Im talking again. Im eating again. Im myself again.
Im sparkling again.
Sputnik was so excited to have his mom back for fun!
This is the miracle.
Yes, you could argue that it was just a series of fortunate events, of the doctor thinking outside the box, the bringing in of the a brain doctor, deciding to pursue a drug usually reserved for those older than 60...that worked.
But with my luck and with my history, I cannot deny the fact that there was some divine intervention at some point within those fortunate events. It all was a stream of miracles.
So does this mean I have Parkinson's Disease? No. I have Parkinsonism, which contains the symptoms of Parkinson's. It can be caused by a number of things but the two that are considered for me are: 1, a build up of toxins in my system or 2, a lesion in the brain close to where Parkinson's develops.
Just in case it's number 1, I'm taking specific steps to detox my body of all these ridiculous medicines I have been on. Even if this doesn't take away the tremors, it will at least be good to know all these toxins are gone!
How do I feel about having Parkinsonism and Multiple Sclerosis? Not entirely happy about it. However, I am EXTREMELY happy to not be where I was before. It was always in the back of our minds, the past few months, that maybe this wasnt MS. That maybe it was something else aggravating it, causing additional symptoms. And that theory was right. So in the end, if I only have to take a pill to help maintain my current status, then I can definitely live with it.
At the end of the day, I have to believe in miracles. Yes, I like answers to every question and I like to know how and why things work or dont. But sometimes you dont get the luxury of answers. Sometimes you have to take it on faith. Believe that, well, "everything's gonna be alright".
And, trust in the miracles.
Love and THANK YOU to my miracle Provider and those who helped along the way,
PS: It wouldnt be a week back on my feet without a visit to our favorite burger shop, Burgatory, with my bestie who came back for the week.
