I could hardly hold my head up. I had been in the office for hours now, sitting in my wheelchair, being evaluated by neurologists, demanding the same information for the 1000th time. I was too sick to be anywhere but bed.
I asked the question, as I had done over a 100 times prior, "What should we do?"
He stared back at me and paused; this medical giant, who was widely respected as being a MS genius across the nation, again, didn't have an answer for me. In his own little "doctor humility" way, accepted the defeat, and said that he wouldnt be offended if I decided to go someplace else for re-evaluation.
I smirked but didnt say a word.
I was traveling to Minnesota Mayo Clinic in 5 weeks to do that exact thing.
I had been really sick for a long time. The funny thing is, whenever I would be "really sick" throughout the past almost four years, we always comforted ourselves by saying "it cant get worse". And then it did. Literally I watched as my health went from bad to worse to extreme to what the hell is even going on am I dying or is everyone just lying???
So I called the Mayo Clinic, put in an application for an appointment, and my request was granted. Just like everything else I held back any hope in receiving answers or help, told myself I would give Mayo Clinic a try and if that didnt work, John Hopkins. Then I'd be done.
January 3rd 2016, fresh in the new year, I took off on a plane to Rochester MN. I had actually been to Rochester many times for an old job and felt very comfortable traveling myself. Looking back, it was an extremely crazy feat to seek to achieve but what can I say, I'm stubborn. (Props to my parents, friends, and family I left behind worrying about me every moment of the day).
When going for the type of consult I was attending, you arrive and are seen by a head neurologist and then given a plan of action for while you are there. You are not really told how many days you will be there for or who exactly you will be seeing...most of that is decided once you arrive and are given a full neurological evaluation.
My hotel was connected to the Mayo Clinic via the skywalks, like much of everything in downtown Rochester. Which was fabulous, meaning I did not have to go outside in the freezing, sometimes below 0, weather.
This was taken on one of the many skywalks...oh and did I mention they were heated? I didnt go outside but three times the whole time I was there.
That Monday I woke up peaceful. Again, I wasnt letting myself hope in anything. But I knew that this was where I was supposed to be, what I was supposed to be doing. I wheeled myself the many blocks over to the main building (let me tell you, my arms were impressive after all the wheeling around I did!), a stack of information of my health story, a plethura of MRIs.
It was a luxury to have a built in recliner.
I have met with more neurologists that I'd like to count. I've done more neurological evaluations than any person should ever have to be tortured with. And yet, I have never had a doctor evaluate me with such intricate detail as I went through that afternoon. For hours we discussed my past, my present, my strengths, my limitations, the evidence, the treatments, the issues. We came up with a plan of action for while I was there: which specialist I should meet with, what tests I should get done, and what outcome we could expect to receive.
Mayo Clinic is Disney Land for the sick...it's where all your health issue dreams come true. It is beyond organized and efficient, I cannot even express to you how well run this place is.
This is the main lobby. And yes that is a piano, that is beautifully played with classical music throughout the day.
Usually swarmed with hundreds of thousands of people from all over the world (this was at 6am).
It sees millions of people from all over the world and yet they run that place as if its your neighborhood dr office. I downloaded their app, their patient portal, where I was guided to my daily appointments, where they were, who I would be meeting with, and how to prepare. After each appointment I could personally read the doctors notes and attachments.
A screenshot of the app's appointments log...just to give a visual of how on top of it they are. And because I'm obsessed with efficient technology. And yes, every day was that packed with appointments.
Each doctor I met with was extremely thorough. It's Minnesota so of course everyone was friendly but it was business all the way, which I loved.
Everything was also SO CLEAN which for a semi-germophobe due to a year of chemotherapy that destroyed half of my immune system, was literally a degree of heaven.
I felt, for the first time through all this, that I was finally being looked at by all angles. All the questions I had, the whys, the whats, the hows, they were all asked by the doctors before I even had the chance to do so myself.
I have the worst veins...every stick I've had recently takes at minimum two times. These ladies got my IV in ONE TRY! No digging around the scar tissue, no oops, nothing. Also, how impressive are my forearms?? I wasnt kidding about that wheelchair power people.
Since I was there for quite a few days, I happened to be able to attend rehabilitation with their Physical Therapy and Occupational Therapy units. We met twice a day and the progress I made just after the short amount of time I was there was beyond incredible. These clinics have a very impressive and unique motor muscle reconditioning program. For hours we worked on ways to reteach the motor pathways in my brain, to avoid the damaged ones, and focus on creating new ones.
(This is not an easy task. And no matter what the outcome, please know that it did not come without much work, blood, sweat, tears, pain. It's not everyday you try and reteach your brain. I mean we're talking superpowers over here.)
I would sometimes have an hour or two in between rehab and testings/appointments. I would sneak up to the 18th floor where they had the most amazing reclining chairs and take naps.
The 18th floor view was pretty fabulous as well.
My trip extended over a weekend. That Friday night there was a country concert at the Mayo Civic Center, which was also conveniently attached to my hotel via skywalks. The ironic thing about attending this concert was that many years prior I had actually spoken to thousands of teens at a youth conference in the same very place. Life, am I right?
When flying out to Minnesota, I got stuck on a plane because I used a wheelchair. Literally. Thanks American Airlines. And due to this, missed my connecting flight by a minute. After a crying session in the bathroom (I was just a little stressed), I decided I would go find the airport overpriced massage place and treat myself.
During my foot reflexology treatment, the lady helping me said something that just happened to stick with me (and I was able to understand...you'll appreciate this is you've ever received a massage/pedicure/manicure) : "sometimes you have to treat the symptoms small and not the problems large." This would turn out to be a precursor for what I would discover at the Mayo Clinic.
At the end of all my testing and procedures and treatments and meetings, I met again with the main neurologist where we went over everything in great detail. He concluded that yes, I do have a moderate to severe case of Multiple Sclerosis. While it is there, MS is not what is causing the issues that I am having. There is another cause, another health factor.
Yet we dont quite know what it is.
BUT, there are ways to help. There are ways to relieve the symptoms so that I can live a better quality of life.
Again, "treat the symptoms small and not the problems large."
It was like I was receiving answers to all my questions while not receiving any answers at all though. I knew that this wasn't just MS - MS didn't make sense on so many levels. But yet I was leaving still with not a clear view of what is going on health wise.
For four years I have gone through hell. I cannot express the levels to which I have suffered and pained. If you google extreme treatments for MS or any neurological condition for that matter, I have had it done. The chemotherapy I went through the past year was one of the worst things I could have ever done to my body. The surgeries that I have had, the thousands of injections, the millions of pills I have swallowed, the hundreds of vials of blood, the countless hours I have spent in doctors offices, the months I have spent in hospitals.......
And now, to some degree, I have realized that they could have been avoided. There was some level of negligence, a high level of misguidance, and I allowed myself to follow the path. I cant fault myself and I cant necessarily fault the doctors, or rather, don't want to fault the doctors.
I know how weird and unique this case is. I've been living it.
But this is why I have decided to end my time on the blog of "the sparkled life". This domain holds the pained story. There are so many good moments as well contained in the story, which I can only validate by my daily motto of "there is never a bad day, only bad moments, as each day is good."
I started this blog after a late night of googling, desperately trying to find people "like me". After many unfruitful search attempts, I decided "hell, I'll just write the story myself". And it has connected me to so many great people and helped me grow closer to the ones that I know and love. I cannot deny the things it has generated in my life, the positive outcomes of so many desperate moments.
And I hope that you can take this lesson from my story: that despite it all, life is still beautiful. That God is good. That when a bad moment happens just drink a glass of champagne and dance to tswift or beyonce and continue living.
Now we are starting a new chapter. I literally have no idea what it is going to hold. I dont know how long it will last or where it will lead me, but I know that it has hope guiding the way.
One of the days I was at the clinic I was woken up very early. I went and wheeled myself across the skywalks, had a poured over Christmas Blend from Starbucks, and went to explore the sights of the clinic I had not seen. I found a room of spirituality, which was basically a quiet room with resources to all religions. It was lovely and peaceful. I sat there for quite a time, reflecting on how many tears this room had seen, of joy, of sadness, of heartache, of loss, of rebirth.
I reflected on myself, of my life, of what was happening around me, of how sick I was, of how I was determined.
There was a wall of prayers, where you could fill out an index card of your intentions. These intentions were left there for a week on the wall and forever within the clinic.
My first appointment of the day was creeping up on me as I reached for a card and a pen. I scribbled the first thought that entered into my head.
And guess what?
Love always, Eliz
PS: if you have any additional comments on my experience at the mayo clinic, anything mentioned for that matter, or if you just want to keep in touch, please feel free to email me at sparklebutonce@gmail.com. You will always be loved!