I do not often speak about my health issues here, but decided to share some powerfully positive news after returning from the Mayo Clinic in Rochester, MN, following a six month wait to be seen. Some of you may recall me writing about my health a few years back, having been diagnosed with MS after the eclipse in 2017. Since then, I have had ongoing neurological issues that extended to include autonomic dysfunction, discovered only recently after the accident with the horse and fence post last spring (I have offered gratitude to that horse many a day as I drive by him, the accident treatment having brought these issues to light!). Several neurologists and other specialists have seen me since 2016 and years of testing followed, alongside growing uncertainty about the MS diagnosis and increasingly worrisome low and high blood pressures and black-outs that have been interfering with my life. I was more than ready to be evaluated at Mayo and learn what has been happening to me and how to heal it!
“When What You Need Is Light”
I went through 8 days of testing and consultations and was seen by multiple specialists, all of whom ordered a cascade of tests in their area of expertise and communicated with each other and back to me through an electronic chart, including all test results (actual radiological imaging, included!), usually within hours or by the end of the day. If one doctor needed certain testing, the staff would rearrange the rest of the appointments to accommodate, much like a big board game... If some specialties did not have available appointments during my scheduled time at Mayo, I was able to sit and wait during an open slot in case of cancellation (and did luck out and get in with rheumatology this way— felt like I had just been called as the next contestant on “The Price is Right”, unexpectedly jumping up and loudly exclaiming when they called my name after 3 hours of waiting!).
“Tell What You Know and Help Will Come”
I can’t begin to express how different this approach is to any care I have ever heard of or received. Mayo is a well-oiled machine, moving smoothly and efficiently with compassion, teamwork (they worked behind the scenes, collaborating on my case), expertise, and a holistic focus on the patient and family. And in case that was not enough to cheer about, the environment in every building I was in (tis a 3 mile campus) was one filled with light and stunning artwork from around the world that lined the hallways, elevator waiting areas, foyer ceilings, and waiting rooms. It literally felt like visiting an extensive art museum and provided wonderfully welcome reprieve as patients and families got lost in the stunning beauty and details. There was stained glass, ceramic, textile, paintings, lithograph, sculpture, murals, mobiles, woodwork, drawings, installations that were floor to ceiling— seeing these works and reading about the artists was one of the best parts of my time there, all set to either softly playing recorded music or live music on one of the many grand pianos. They certainly know about creating an environment of healing! This soothing atmosphere countered some of the crazy pace necessary to make it to well over 30 appointments…
The most amazing part of the trip, though, was gaining an understanding about what has been going on in my body and how to begin treating and healing it. I was beyond thrilled to hear that I do not have multiple sclerosis or a life-threatening condition that the docs here told me I had! I can continue driving and we do not have to leave our land and move near a hospital for accessiblity— exclamations of joy and deep sighs of release from these hills! I feel like a boulder has been lifted off my shoulders and can’t begin to put into words the immense relief I feel and the hope for improvement in my symptoms as I gradually implement the interventions. I won’t go into detail about the details (lucky you, haha), but do want to share about one of the diagnosis most associated with my neurological issues, as I had never heard of it-- not even from the four neurologists that had previously worked with me, despite it (unknowingly) affecting many people...
“A Path Emerges”
“Central Sensitization Syndrome” is the condition responsible for the growing cascade of symptoms that have done a number on my body, head to toe. It is a relatively newly-studied syndrome (and the umbrella over fibromyalgia, chronic fatigue syndrome, POTS, TMJ, and a variety of other conditions, as shown, below) and there is much research being done on how to best treat it, adding to what they already know is effective. It comes about from a variety of stressors on the central nervous system (brain and spinal cord)— trauma, stress, illness, genetic predispositions, surgery… the body’s natural response to these stressors triggers the sympathetic system to go into high gear in attempt to cope/survive, but is then unable to turn back off. The parasympathetic system gets fatigued as it tries to counter the fight/flight/freeze response and a vicious loop is created. The entire central nervous system gets sensitized and rewires itself and eventually, the pain neurons involved in the original trauma take over the sensory and motor neurons in the body (including the peripheral nerves that stem from the central nervous system), spreading out from the site of the original stressors and causing a wide variety of symptoms that can be quite debilitating.
It was important for me to learn through the provided training that the central nervous system can literally be slowly rewired and to know that this healing can come from diligent work to enable this restructuring. The human body and mind are capable of so much more than we can imagine! I am thrilled to have some new medicines to help with some aspects and many non-drug interventions, as well... Strengthening cardiovascular functioning, core strength and vagal nerve function are three of the best things we can all do for our health, per every single specialist I saw at Mayo. That is amazing to me-- accessible to all of us, free of charge. Diaphragmatic breathing for 30 minutes/day is vital in helping the nervous system calm and reset, basic as that sounds. After going through 8 hours of training about this syndrome, I have a vastly increased understanding about how my body has tried to adapt to various things in my life and much respect for its efforts to stay whole. I feel so excited to reclaim even more functioning, all levels…
“To New Growth and Healing”
After being home one week, now, I have had a few minutes to ponder some of the valuable lessons I learned that were of an emotional nature. Using my voice to repeatedly speak up directly to the doctors for what I needed and to have it received with respect and compassion back towards me was HUGE— one of the most empowering experiences in my life, actually. How amazing it would be if we could all be seen and heard in the medical system, especially for symptoms that are not easy to diagnose, whether it be by a doctor, nurse, or technician… Having this positive experience after years of often quite the opposite response was so validating and relieving. Trusting that staff really did want to help as they worked me over helped me relax enough to get through the invasive/painful parts, especially when holding onto the power of being loved by those in my life (instant awesome balm for my mind and body!). Trusting in myself that I could get through the discomfort and the fear of the unknown was deeper, still. I drew strength from the courage of all that shared time waiting and having their bodies deeply peered into, knowing it was a privilege to be evaluated there. These lessons blended into the ongoing practice of receiving (not my strongest suit!) during this intensive time.
I was gifted by my brother-in-law's generous support in accompanying me to Mayo so that my dear spouse could stay home and keep our kiddos (and animals) as grounded and supported as possible while I was away for 2 weeks. Bart’s help in navigating the underground pedestrian tunnels and myriad of changing appointments, plus emotional support and laughter at a wide variety of unusual circumstances, was invaluable. We were incredibly happy to take a break from the first week of testing to head north to Minneapolis for some wonderfully replenishing time spent with my niece and nephew. We rejoined normal life for a while and took in many nurturing experiences (I about melted on the floor of the Conservatory, having been away from nature for 10 days, already— such instant bliss to breathe in that lush air and let my eyes take in the organic shapes, colors, and patterns, lining my noggin and lens with years’ worth of encaustic inspiration). This couple of days away made such a difference in returning for week two!
I felt incredibly fortunate to carry the love and positive intentions and prayers from my family and friends, near and far, that were holding space for me in deeply appreciated ways (was pretty quiet about going, as it was not so comfortable to put it all out there!). We saw many that were alone in those waiting rooms and were often buoyed by the connections and positive energies that were exchanged, reminders that no matter what was going on, we had things to offer each other just by the mere act of acknowledging each other’s presence, even for moments... I reflected daily on the amount of suffering that was present in those packed hallways and waiting rooms and the amazing tenacity of each and every person there, struggling with some aspect of the human body/mind/spirit. and hoping to find answers and a way through. Plenty of perspective to be had that I will continue to carry within me!
“I’m Going Home to Reclaim My Life”
I could not be more grateful to go into the year and decade that lies ahead, feeling expectantly hopeful for the ongoing lessons and growth in my life. I am anxious to weave in what I have learned and know there will be challenges, just as we all have when implementing change and new information. I know that art will continue to offer healing on levels barely begun to be understood by science (one of the docs asked me what I was doing to treat” x” diagnosis, and I said, “Oh, I make a lot of art”— he paused for a moment and I could see the starts of a smile on his face before he said, “Yes, that is good, but what are you doing to treat “x” diagnosis”, lol… little did he know that art is one of the things that brings the most profound healing to my system, and not just emotinoally— I am quite sure that continuing to work my hands/mind/body helps heal the impaired functioning that has come and know that continuing to do so will only bring more rewiring of those neurons. Hooray for healing by what brings joy through engaging and challenging work! ).
I feel tremendous privilege in having been able to seek help at Mayo and to get the correct bundle of diagnosis in order to move on with proper treatment. Thank you for following along on this long post. It is hard to capture the profound experience in a matter of paragraphs, while trying to keep some semblance of privacy :). If anyone would like to message me for more direct information about my experience at Mayo, I would be happy to pass that along, as a friend so kindly did for me before I came— hugely beneficial and reassuring. I realized during my time there that Mayo offers help for such a wide variety of conditions and that this team framework is likely underutilized, as many do not realize what a holistic assessment can be found there, much more efficiently and effectively for me than the years’ worth of resources, time, and stress spent from seeking out specialists back home. In closing, I wish much love and light and health to each of you, on whatever level you seek it…
The hills and sky greeted me with such blue behind the clouds… a welcome return to space and possibility!
Here are a few links that might be helpful for you or someone you know…
“Tame the Beast” (dealing with chronic pain): https://www.youtube.com/channel/UCXTg1eVjEp06jyz3mNKRtlA
Central Sensitization Syndrome: https://www.youtube.com/results?search_query=central+sensitivity+syndrome
POTS, simply explained :):https://www.youtube.com/results?search_query=pots+syndrome
Fibromyalgia: https://www.youtube.com/watch?v=l5uJcWqWGw8
Deb Dana, LCSW, on Polyvagal Nerve: https://www.youtube.com/watch?v=wnf9eioJuDI&t=1s.
Deb’s book, Polyvagal Theory in Therapy: Engaging the Rhythm of Regulation, on healing the vagal nerve— excellent resource (and a new one of hers on vagal nerve exercises is coming out in April 2020)!: https://www.amazon.com/Polyvagal-Theory-Therapy-Interpersonal-Neurobiology/dp/0393712370/ref=sr_1_2?crid=74KP7GM4FVA7&keywords=deb+dana+the+polyvagal+theory+in+therapy&qid=1580132780&sprefix=deb+dana%2Caps%2C203&sr=8-2
Bessel Van Der Kolk’s profound resource, The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma: https://www.amazon.com/Body-Keeps-Score-Healing-Trauma/dp/0143127748/ref=sr_1_2?keywords=the+body+keeps+the+score&qid=1580132994&sr=8-2