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Patient Voice – Look For Surprises

Look for SurprisesStill reeling from her diagnosis, Nicole shares how three surprises took her down a path that led her to help, hope and BHC.

Nicole Paolucci Rabanal is a wife, mother, friend and physical therapists from Steamboat Springs CO. Upon returning to health she looks forward to living her life fully again as a wife, mother, friend and physical therapist who loves to ski, rock climb, hike, bike, raft, laugh hard and sing. In the mean time she chooses to concentrate not on the disintegration of what she loves but rather on the real spiritual growth of which she is becoming capable.

 

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Look for SurprisesNicole Rabanal
by Nicole Paolucci Rabanal

After struggling for over a year, seeing 17 different specialists, I was finally diagnosed. A very highly renowned and respected neurologist arrogantly burst into the room after my exam to pompously announce,

“You have SEID”. After explaining what those letters stood for he gave me this advice and walked out of the room, “Stop doctor shopping, get off your own back, and wrap your head around this”. Unfortunately, I have come to find out this is not an uncommon story.

Just two weeks later, I sat in a chair outside a conference room waiting to attend the first of many lectures at a huge annual professional conference in Anaheim, CA. I was exhausted from the travel the day before, needing to take a cab the half mile from my hotel to the convention center, and wondered how I would ever make it through the next 3 days. As I sat there, resting and waiting,  I picked up a 5-fold over-sized pamphlet listing all of the upcoming lectures for the next 3 days to pass the time. Almost immediately my eyes stumble on a presentation titled “SEID, ME or CFS? What’s in the Name and Why it Matters to Physical Therapists.” Surprise #1.

My jaw hit the floor and my mind raced. Seriously???

I had never heard of SEID until two weeks ago and here it was – a full lecture describing the newly renamed disease I had just been diagnosed with.

Was there any way I could change my registration and find my way to the venue 10 minutes from the start time? This was a massive conference encompassing the entire convention center and 3 surrounding hotels. What were the chances that I could make it there in time without collapsing? As it turned out, the lecture was only 2 doors down from where I was currently sitting. Surprise #2.

Still a bit in shock, I made my way for a seat in the second row as Dr. Lily Chu took the microphone. The presentation was incredible, describing me and my situation almost perfectly. They answered so many questions and generated a multitude of others.  After an hour and a half, my mind numb and foggy (thankfully, now I understood why), the presentation ended. I sat patiently waiting as the handful of other physical therapists went up to ask their questions. My turn arrived, introducing myself to Dr. Chu I told her that only 2 weeks ago I was diagnosed with “all of this”; she responded with surprised eyes full of compassion. In short, she told me the closest ME/CFS doctor to Steamboat Springs Colorado was Dr. Lucinda Bateman in Salt Lake City, UT.

I had just been unexpectedly connected to a doctor who was abundantly educated, believed in this disease and could help! Surprise #3!

All this has lead me here, sharing part of my story with you. I am eternally grateful for these 3 surprises; they have given me hope and consolation. Some would call it luck, others chance, but I call it Divine Intervention and know I was put in that chair specifically to find Dr. Bateman and her amazing staff.

My struggle with ME/CFS continues but I am in the hands of the best possible doctor whose care and compassion is priceless. Each day I know that I am exactly where I am meant to be and am ALWAYS looking for the next surprise. I hope you are too.

Every moment in our lives is an opportunity if we chose it to be.

Peace and all good, Nicole

2 Comments

  1. Dr. Diane M. Becker on April 27, 2017 at 7:38 pm

    Unfortunately, as a doctor, Ive had to diagnose myself with the aid of my Johns Hopkins internist, infectious disease specialist, whosaid he ascribed fully to to the construct of a post viral syndrome characterized in part by mitochondrial dysfunction, but was not too sold on the concept of a ” disease. ” and was deeply concerned about “labeling” me on the record in my home institution. He indicates there is nothing we can do anyway. So I have a ex of post viral immune mediated multisystem syndrome!

    I’ve taught myself pacing, CBT, preservation of energy, etc. I am a researcher and have mastered the literature. My neurologists both said there is no evidence that I am anything but ” normal.” Neither even mentioned ME/CFS when my chief complaint was inability to walk after mild exercise, etc.

    I’m absolutely classic, with a post recurrent zoster onset. Even as a Professor of Medicine at Johns Hookins, I’ve not had any responses to my many queries only for one consultative appointment with Dr Bateman. Similarly, the few other experts have all blatantly ignored my request and that of my doctor.

    I’m learning to care for myself, managing well with markedly diminished exercise capacity, but certainly wish I could have just one encounter to guide me and my very excellent kind internist. So the surprises the author lists have never occurred to me. How does one ever find care? I do not Doctor shop. I know better. I’d fly anywhere for one consultation at a moments notice.



  2. Lisa B. Clark on April 28, 2017 at 6:53 am

    I have lived with CF/FMS for 32 years, the last ten years under the care of Dr. Bateman. I am so grateful for Dr. Bateman who not only spends at least a half an hour with me at my apointments; she spends hours, as do all of her people in the Bateman Horne Center, doing studies that will help treat and diagnose CF/FMS. I have participated in several of the studies and will continue to do so.
    I relalize that everyone has difficulties and challenges of many kinds and with this disease being one of mine; I’m just grateful that I have a smart caring doctor and that I have a comfortable home and food and medicines. What if I had CF/FMS and lived in Syria or in other awful circumstances? How blessed we are to have a safe, comfortable place to rest when we need to (a home), food to eat when hungry, and GOOD medical care at the BATEMAN HORNE CENTER.