Kindly pardon the language unbecoming.....
Yesterday was Sunday, January 15th. The 8th Anniversary of my first doctor visit for a complaint that consisted of "why does it feel like the left side of my body is dying off?" My PCP looked at me and said "Dying off?". I said "YES! Weird, isn't it?" That was January 15, 2009. And that conversation sent us on a very long & expensive 5 year odyssey that landed me in a movement disorder neurologist's office in December 2013 with the proclamation that "Yes, the DATSCAN does show that, in fact, you have EARLY ONSET PARKINSON'S DISEASE" The Michael J Fox kind. Welcome to your new life. Today marks 2,920 days.
How was my anniversary? Well, Sunday was a beautiful day connecting with friends, catching up and making plans. A great distraction for me because, physically, it was a really shitty continuous tremor day. The non-stop, calorie burning, adrenaline rushing, can't sit still, pain in my ass (and legs and curled toes and stiff fingers) that ultimately won't let me go to sleep just to piss me off kind of day. LUCKILY, that experience is NOT my every day. I am one of the fortunate. But here is what I have to say.......Parkinson's - I am not giving up. You like to test my endurance but I take whatever you throw at me every single time. I had no idea how tough my will is until you came along. Tonight I say my prayers with a smile on my face that says, "I WIN". I will never, ever, ever give up. Ever. The less I pay attention to you the better off I am. Tomorrow I will wake up and the new day will begin calm once again. And I will make a positive difference in someone's life.
I'm on a mission. Just try to stop me.
Goofing around one night My girlfriends and I hatched a plan to win the lottery and fly to France. I wrote them this poem prayer in about 15 minutes to help make our dream come true.....
Now I lay me down to sleep,
I pray the lotto numbers will creep,
into my head before I wake,
so off to France with friends I'll take.
Open my eyes, a surprise there will be
A shiny new jet looking back at me.
All fueled up for a flight overseas
Hey girls, you with me?? I hear, "Yes! Yes! Please!"
French champagne and Rosetta Stone
will get us prepared for the great unknown.
We just need Rosetta to teach us to say
"I'll take one in each color!" That will make our day!
Tell me this isn't just a dream
We pine for those bags in blue and in green.
To see them in person would make us scream
"What an amazing plan we hatched as a team"!
The girls of MSA have taste
Thank you Liz and team for giving us this place
To dream big dreams that take us away
From everyday lives where we get a chance to play.
Come on Lotto numbers, I know you are there
I pray you'll appear from out of thin air
This dream is so real for one and for all
You just need to gimme five numbers..... and the PowerBall.
It never hurts to DREAM BIG!!!
I am confident I am not the only one this is happening to. Just when you think "I can handle anything", more gets loaded on top. At some point you just have to say its important to take care of your health. So I am officially protesting.
I was already at too much; more responsibility piled on has broken me and nothing is worth bringing Parkinsons on faster. I am going to be the one incapacitated as a result and then what? That is scary shit. No one is going to be able to help me. Love and hugs wont keep a wheelchair at bay. I am turning inward and getting "real" about this. I choose my health and apologize to everyone i have to say "no" to.
The stress is palpable and my body is screaming "you can't handle this. Wake up!" Dont know if you are an expert at tamping down wake up calls but I have a degree in it. This time it threatens to take away my vitality. This is no longer a choice -- find balance or suffer the consequences.
Has it happened to you? Life drew a line in the sand and dared you to cross it? Do I tempt the universe? There is no going back if I pick the wrong answer. It doesn't get any more real than this, people.
I am so fortunate to have an amazing Super Hero Support Team to help me through my Journey. Friends have shown their love through surprise pieces I received in the mail this year. I was just admiring them in my jewelry box and thought I would share them with you. They make me smile and fill my heart.
The sterling silver cuff is engraved with my favorite quote (that is found in the footer of my website). I admire Eleanor Roosevelt; a strong woman at a time when women were not expected to excel. She wrote: "The future belongs to those who BELIEVE in the beauty of their dreams." Yes it does.
The brass cuff carries a quote from "Alice's Adventures in Wonderland" by Lewis Carroll. Perfect for those whose lives have been changed drastically. It reads "I can't go back to yesterday because I was a different person then." This reminds me not to dwell on what "was" when my life was so much easier. The day it arrived it made me cry. It is so true. We can't go back, but the future has so much to look forward to, as well.
The last pieces are GIVING KEYS. You know they are one of my favorite charitable organizations supporting those coming out of homelessness in Los Angeles. My bracelet is emblazoned with "STRENGTH". My necklace is stamped with "HOPE". Hope and Strength - two pillars of my life that are deep in my roots. My mother is my role model. Thanks to her, I muster both of these, get up, go out and conquer every day. Thanks Mom.
What reminds you to stay positive and motivated every day? A special thank you to my girlfriends who sent each to me.
I am not sure how much you see that I've become so proficient at the Superwoman thing that when difficult days pop up it may be hard for others around me to grasp how incredibly hard I am working - in that moment (and every moment) - to keep it together.
No doubt about it. I muster up every ounce of everything I am to push through. Tamp it down. Crawl up over it. GET UP. SHOW UP. I zig. I zag. My brain goes into overdrive to find the solution to stay on the rails. And then BANG, I get it done. I NEVER GIVE UP. EVER. I had no idea how strong and courageous I could be until Parkinson's Disease.
I may not appear to have PD in person thanks to life giving meds and my inner resolve. The downside to that is getting the help I need when I need it. Please don't forget I have Parkinson's Disease. If you see me struggling please help me. Find encouraging words. Tell me it's going to be okay. Hold my hand. Don't be afraid. Your strength becomes my strength. Hug me until I stop shaking. Say a prayer with me.
Each of you are my guardian angel. You are with me in those moments. My SuperHero support team; my shining lights. No one is luckier than me.
Okay people....We got this....Let's do this......
I promise you. There is no one with more precious, loving and loyal friends and family than me. I have an overflowing blessing cup that never ceases to amaze me. My heart is so full. My life would not be the same without each and every one of you. Thank you for being a part or my journey.
The older you get the longer your birthday celebration becomes and you find yourself enjoying an entire Birthday Week. I most definitely take advantage of that little benefit. Welcome everyone to my Birthday Weekend.
I am especially excited because my birthday is Monday. August 22nd. I turn 52 at precisely 2:55pm. At 10:30am, I will be picking up my new medicine to start the drug trial. ON MY BIRTHDAY!!!! I would say there is NO better present than that in the world world.... aside from a cure. In that absence, this is most assuredly the next best thing.
A shipping delay by the pharmaceutical company added to my work commitments coincidentally pushed my start date to August 22nd. I truly think it's all in the timing!!
LET THE CELEBRATION BEGIN............
Do you need support?
Find us on Facebook at:
"Help Take Back My Life in 2016" (aka Lisa's Super Hero PD Support Team)
Connect with me online:
"Lisa Vullo is One Face of Early Onset Parkinson's Disease. Come along on her journey from symptoms to diagnosis; through treatments and therapies. There are highs and lows, miracles and heart notes, and the determination to never, ever, ever, ever give up on the power of HOPE."