I have been subscribed to the DAILY OM daily email for years. Only because I swear they have hidden a listening device in my home to get the scoop on what I'm talking about, and then they send me (and thousands of others) an email that is directly related to how to positively deal with it - - just about every day. It is way too creepy to ignore so I read it, faithfully, every day.
Right on cue.... here is a copy of their Horoscope email for LEOs for July 1st. (I have to go find that microphone now.)
On June 20, 2018, My 3,443 Day Nightmare Has Ended in a Miracle thanks to Shands Hospital at the University of Florida
Under the heading of, "YOU ARE NEVER GOING TO BELIEVE THIS......."
All went better than expected yesterday at the UF Health Shands in Gainesville. The staff at the Movement Disorder and Neurorestoration Center is incredible. Their protocol was unlike any I had been through in the past three attempts at other well known facilities that offer Deep Brain Stimulation surgery I so desperately needed as a Stage 4 Early Onset Parkinson's Disease patient.
My day began with one hour of PT with Alison Kraus, PT, DPT, NCS, and one hour of OT with (my personal guardian angel) Heather Simpson, MOT, OTR/L. I then saw my doctor, Wissam Deeb, MD, who together with the two other health professionals worked as a team to properly diagnose. Dr. Deeb had the very good fortune to deliver unexpected, jaw dropping news to me. I am not able to share the results with you at the moment, but I promise I will soon.
This open letter is to thank the unending love and support from the hundreds on my support team that were praying hard for a miracle. We got one. I lived 3,443 days as a Parkinson's patient. My decade long struggle has a final twist that (just like in a movie) leads me with no forewarning, to a happy ending; one reserved for Miracles from God books.
I am overwhelmed, blessed, and dumbfounded. I have accepted God's miracle with blind faith and am allowing myself some private time to process the last 48 hours.
I go between elation and crying and back. I still have work to do, but its not what you think. I will be back soon to explain what happened.
You seriously are never going to believe this.
I NEVER GAVE UP. Don't you ever, either.........
With joy in my heart,
P.S.: I just re-read my most recent blog posts where I write
DON'T GIVE IN
DON'T GIVE UP
PARKIINSONS WILL NOT WIN
There is a reason everything in life happens, in the order it happens. Their "NO" may have saved me from dying the day that surgery may have been planned. Their "NO" may lead me to the right timing of "YES". Their "NO" may have made me work harder to take care of myself and naturally improve my quality of life in the interim. Their "YES" may have stood in the way of something positive I would have missed out on. Maybe its not time to put holes in my head. Maybe a medicine that will stop my progression will be released and that is what I meant to take. My thoughts are not pointing to sadness. They keep pointing to: Something keeps stopping me from having brain surgery. What? It wasn't supposed to happen today. Why?
Now I know why. The Universe was guiding me to the right answer. My intuition was right on the money!!!!! Trust your gut.
Thank you for all of the "thinking of you" notes and wishes and prayers here and on Messenger. A really good health day is a precious gift. I've been sleeping better so today I woke up to enjoy one! To celebrate I thought I would check in and send you my smile in hopes you will pass it along to someone in your path today who could really use one. If you give yours away, chances are you will most likely get it right back. Have a beautiful day.
PS: My next surgery eval date is June 20th. Will check in as we get closer.
Happy New Year and Welcome 2018!! Couldn't resist saying goodbye to 2017 in the LBD I welcomed it. Bye Bye!!
I send warm and joyful wishes to all of my friends and family this Christmas. I'm sorry that I have not been as present this year. 2017 was a long year with my dad's passing and my battle with Parkinsons. I saw major set backs in 2017 but in defiance, I have triumph in my sights for 2018. I live a private life now I don't chronicle on social media. I live it instead. Know that I have found solid ground once again and I am thriving. I am filled with gratitude for the little things. I have tremendous love surrounding me. I triumph over PD some days and I exert more effort to do what came so easy on other days. I walk slower than I used to, but you can't stop me on my bike; that's where I leave PD behind. I look forward to DBS surgery with anticipation. I have so much more to accomplish in this second half of my life. PD will soon move out of my consciousness after surgery thanks to a pulse generator regulating the signals from my brain which will allow me to live in tremor free peace. I smile at the thought of that first day of stillness. Incredible! My health is better than ever and so is my heart and mind. Thank you for all the messages asking for an update. I wish you peace, joy, love, prosperity and very good health in 2018. And don't forget to live life like you mean it by making every day count.
Everyone who follows me knows I am a bright light for upbeat and positive living to deal with my Parkinson's Disease. This morning brought about a REALITY CHECK in this letter to my family (please excuse the expletives for which I have earned and am unapologetic after 8 1/2 years on my PD journey.) I write :
To My Family,
I've just made it through another sleepless night after not being able to stay asleep. Thank you Parkinsons-induced insomnia. I officially hate you.
My problem? A skyrocketing level of stress I cannot shake after the experience of going off my meds TWICE and witnessing my underlying condition. My body hidden by bottles of expensive medication is unable to breath comfortably at my diaphragm, my neck contorts my head to the right and upward pulling my chin diagonally away from my body painfully out of control, all while my muscle twist and turn in agony as I cry out loud then sob with each misfiring nerve in all my limbs; all four stuck straight out from my body like a corpse. I cannot sleep. I cannot walk. I have no reflexes in my legs. Everything hurts. I have Stage 4 Parkinsons under this expensive medication. I am scared shitless and I cannot handle this by myself.
My fears are exacerbated by living alone, which I've never done before. I've officially failed at my attempt. My fears foster a depression that disappears as soon as I am with you. I want to live a happy, full, healthy, active life. I want to jump out of bed in the morning and enjoy a productive day. Those days are gone. Replaced with no motivation to get out of bed or leave my apartment under the weight of constant panic. I feel like the earth is rumbling beneath me. I'm on very shaky ground and trying desperately to hide. Another person's energy is all it takes to light mine up and motivates me to make shit happen. I take my meds on time and completely forget I even have it. It is clearly night and day and there is no doubt about it. Living alone has taken its toll since dad died and I am struggling. I woke up yesterday morning with the highest stress levels I've had since coming back to Florida in 2013. Frankly, I scared the crap out of myself and was sure I was going to be making a trip to the ER for the sheer inability to get my out of control rapid heart beat pounding in my chest under control. I swore it was going to end in a heart attack That's it. I've had it. Now I'm pissed off and I need to take action now. I refuse to live this way.
Asking for help does not come easy or naturally for me. I'm usually the one that gives it. I refuse to continue to pretend I can handle this. I can't. I need to recover from the last 12 months of constant change. I went from Stage 2 to Stage 4 PD in only a handful of months. I need to reverse this and quickly. I refuse to let it get any worse and the first step on my road back is to get out of here.
I waiting for the landlord's answer to vacating my lease early. Mom has offered to take me in to care for me. I gratefully accept her offer.
I am not waiting for PD's answer. Only I can reverse this mental ping pong. I need to get on with living, not dying, and the first step is to rejoin the world by stop feeling sorry for myself. The last 12 months have been challenging to say the least. I promise to admit what I can and cannot do. Do what I can to the best of my ability and quit trying to make everything perfect. That was my old life. I am not okay on my own. I need to eat, sleep, exercise, meditate, take my meds on time, dream, create, laugh, run, ride my bike 10 miles a day, and fucking enjoy life while my meds still work. Like Cinderella I can magically walk and run but don't know how or why. I need to stop thinking and start living before I turn into a giant pumpkin. RECOVERY WILL NEVER HAPPEN LIVING ON MY OWN. I am not wasting another day. This is a 10 round match. PD may have won round 4. Round 5 ends in a knock out. I've had enough of this shit. I need to get over myself. Whatever you do, do not allow me to live on my own. I suck at it. Royally. Come see me and bring a ladder so I can climb out of this mother fucking hole I have made. I've got important shit to do. Losing to Parkinsons is NOT one of them. Not today.
MORAL OF THE STORY: Be careful NOT to tick off a warrior. We fight back dirty!!!
Good morning, friends! I woke up to the most amazing surprise in my email; it shocked me straight awake. It was from the founder of Feedspot.com, the RSS Feed for bloggers. informing me that my blog has been named one of the TOP 50 PARKINSONS BLOGS on the web today. Click here to see their full story: http://blog.feedspot.com/parkinson_blogs/
The founder, Anuj Agarwal wrote: "I personally give you a high-five and want to thank you for your contribution to this world. This is the most comprehensive list of Top 50 Parkinson Blogs on the internet and I’m honored to have you as part of this!" To say this is a shock is way understating how I feel at the moment.
Their RSS Feed is subscribed by all of the major news organizations (TV, radio, print). If you don't know what an RSS Feed is - you can subscribe to many different publications and Feedpost will send you an email each morning with headlines so you can read what you are interested in vs. having to read every single website individually. Feedsport.com is offering my blog as one of the 50 choices for Parkinson's information available. Please check it out. Go to FEEDSPOT.COM, open an account for yourself and subscribe to my blog along with other amazing outlets, including the Michael J. Fox Foundation, the National Parkinsons Foundation, Parkinsons News Today and the Brian Grant Foundation! I am in their amazing company.
I know I need to breathe, but am having a bit of a hard time doing that. Isn't it funny and incredibly humbling when your life changes in a nanosecond? Synchronicity still thinks I have a way to go before I am perfectly in balance so I give up my control and let the Universe keep re-arranging. Friends, we are on the ride of our lives.
Thank you to Anuj and his crew for this honor. Thank you God for my life every single day. I have a beautiful life I would not trade for anything with beautiful loves and angels surrounding me at all times. Amen.
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.
Do you need support?
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"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."