Never could I have ever imagined that I would spend the better part of the 5th decade of my life battling a serious illness. Then on cue from the Masterful Maestro, Jesus Christ, a few tweaks in 1 type of medication and 2 supplements began to turn things around. What has transpired seems miraculous to me.
31 symptoms aren’t as bad right now as they were when I wrote them down on December 29, 2018. A few more are gone.
23 triggers of sometimes violent, convulsive episodes have diminished in severity as they were when I wrote them down on December 29, 2018. A few more are gone. A few days per week I have none.
And in a matter of a few hours from now, at 6:13 a.m. to be exact, I will be able to board a plane all by myself to head back to Rochester, Minnesota and the Mayo Clinic. An aggressive schedule awaits me for my follow-up treatment and medical visits. I’ll stay in a special condominium that will accommodate any ongoing chemical sensitivities; I’ll even learn to Uber and Lyft. Yay!
I am hopeful that things will turn out alright. I am slowly getting stronger and pain levels are coming down with various therapies that are finally working! Master Gardening activities are ticking up and I have a sewing project that I work on in the hours when I am feeling better. Call it my transition back into life.
What a good feeling. Thank you Lord for seeing me through to this day. Thank you also to my beloved, Steve, who has faithfully walked with me during thousands of dark days and nights. I am so blessed. Restoration is coming at last and I am as humbled as I am grateful.
Lord, please hold my heart and my hand as I make this trip. Let’s go! JJ
And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.
Just like consulting a new bride is not the best person to go to for wedding planning advice, a new patient is probably not the best person to advise on how to navigate the Mayo Clinic. But I’magonnadoit anyways!
Two weeks ago I was exceedingly stressed with the immense planning required for me to make an extended medical trip let alone to the enigma of the Mayo Clinic! It was all I could do while battling a serious illness to collate a pile of medical records into a tabulated notebook, make hotel reservations at a place that could accommodate chemical sensitivities AND a dog, make Clinic appointments, complete the pre-registration and questionnaire requirements of the Mayo Clinic App, clarify insurance issues, grocery shop for my special diet, oh and pack my stuff! Each person will have unique preparation tasks to consider when making the decision to go ahead and make your way to the Mayo Clinic. Here is my brain dump from our first trip in February of 2019.
Before You Go
Plan on hand-carrying any related medical records with you to each new consultation/appointment. (We overheard patients complaining that their faxed records were never received by the right place at the right time.) Condense and organize your paperwork so you can retrieve pertinent test results, CT/MRI/xray scan disks, insurance cards, etc. quickly.
While there are numerous transportation options and (limited) shopping in the underground subway, bring your favorite snacks and drinks with you from home.
Bring extra medications, treatment supplies, (dog food?) and personal products in case your stay is extended, which happens quite often.
If you are driving, consider staying in an Airbnb house/apartment or hotel with a kitchenette. Bring the first few days of groceries with you, even if healthy convenience foods, and especially if you have any dietary restrictions. Appointments can be exhausting and you will want nourishing foods to sustain you until you can get to a grocery store. Most hotels offer breakfasts but do they meet your needs? Contact the Travel and Concierge Desk at MC who can email you lists of hotels with their amenities.
Rest assured that practically everything in Rochester, Minnesota is geared towards the patients and staff of Mayo Clinic. Hotels have shuttles and shuttles-and-buses run in every configuration possible from airports to local attractions. Check with the Travel and Concierge Desk at MC for details.
Pick up a map in your hotel lobby that covers the MC and surrounding area to get familiar with things before your first day. Take a drive by the St. Mary’s and Mayo Clinic/Gondo campuses. Both campuses are huge yet there are central access doors for each to simplify things. There IS NO information desk inside the front doors of MC/Gonda building but there are 2 valet desks just inside the front doors that are very helpful.
If you are a Facebook user, reach out to others with the same medical condition who have gone to MC for tips and collaboration. Just learning from another patient that all of the buildings and hotels around the main campus are connected by an underground “subway,” eased our concerns about travelling to MN in the dead of winter.
Go in the Winter if you can. It’s less crowded and, if there is really bad weather, you may have access to more last-minute consultations due to cancellations. This helps condense your schedule to make the most of your visit. Having said this, the MC shuttles may be late in a blizzard but never stop running and the Clinic doesn’t close! And no, hotel rates are not cheaper in the winter but they can be during weekdays.
Purchase a multi-day parking pass if you plan on accessing the patient parking garage for more than 2 days.
Bring nutritious snacks and water with you. You will use them!
Wear comfortable shoes and layers of clothing to navigate the long hallways with ease.
Note that wheelchairs and transporters are available from the curb when you arrive. Just alert the shuttle bus driver or valet staff as to your needs and make arrangements ahead of time when possible.
Arrive early to every scheduled appointment. Complete Check-ins via the MC App or Online Patient Portal to save time. Alternate: Check-in kiosks at the entrance to every wing of the MC and Gonda buildings.
Note the computer desks available in the expansive waiting areas, MC WiFi that we found helpful in upper floors and internal offices, and the special check-in kiosk at the entrance to the huuuuuuge lab. Or you can wait in line at the lab.
Very likely you will receive a personalized schedule after your Initial Consultation which details everything you need to know. You can go to the front desk of any department as a “Checker” to see if they have any openings that would allow you to move or change an appointment to streamline your scheduling. Repeat this Checker periodically as things change quickly and you may or may not be notified when an opening occurs.
Gather business cards of your healthcare providers after each appointment as phone numbers and provider names are NOT ALWAYS listed on your patient schedule!
Check periodically via either the Patient Online Portal or MC App for test results, and messages from your healthcare providers. Test results and reports are processed very quickly in comparison to our local healthcare services.
Visit the subway on the lower level even if you don’t plan on stopping at the cafeteria. It’s an amazing place buzzing with activity! The glass atrium in the cafeteria is beautiful too.
Utilize the Airbnb host or hotel desk clerks as a resource for just about everything. Meet the other folks on your shuttle who will usually and gladly share their experiences, recommendations with you. Most folks you meet will be from out of town!
Message your healthcare providers via the MC App with non-medical questions or anything that can help maximize your stay at the MC. They usually reply within a day or two.
Plan follow-up appointments as soon as the need is identified. Staff do their best to work you into the schedule of your healthcare provider when they know that 1) you are travelling to the MC from out of town and 2) when you are scheduled to leave town.
That’s it for now, end of brain dump! Take care, Gentle Reader, and fellow sojourner to the Mayo Clinic! Please contact me with your tips and suggestions and I will add them as needed.
As the winter loses its harshness on this second day of March, so have I. Seems that I am letting go of a few things inside and out as a change of season has landed on our doorstep . . .
Our trip to Mayo Clinic ended with a focus much different than the one we had when we arrived. Briefly, the expert neurologist informed us that my labs that I had painstakingly collated from home were “garbage,” that my problems appeared to be psychiatric, and that further testing would be a waste of money: we see 150,000 people a year in the Autoimmunity Clinic. You don’t have it! A second neurologist expert used more functional terms yet still claimed that “even a 3rd year medical student knows the difference” in the various differential diagnoses. So we (my healthcare providers to date + myself) are idiots? So it seemed as we entered the weekend in Rochester, Minnesota . . .
Six days after that first appointment, the shock of what they were telling us had worn off. The exhaustion and soreness from extensive lab testing, EEG, lumbar puncture, and 5 additional consultations gave way to a new direction in my ongoing recovery from a serious illness. It was a tough mental journey while literally trapped on Sunday in a Minnesota blizzard but I did get there. First, on Monday an Endocrinologist determined that I was on too much thyroid medication and it could be contributing to my symptoms. Holy cow! The new medication was ordered that afternoon and sent on its way to our home address. Days later, the adjustment process is both rocky and underway.
Second, the physical rehabilitation department has a special program for what they term a “Functional Movement Disorder.” The physical and occupational therapists retrain the brain using specific balance, breathing, and movement techniques within the context of stimuli for me that trigger my convulsive episodes. Interesting. A trial run of this approach was horrific! In retrospect however, I recalled an evaluation in a local Balance Center 2 years ago and treatment that was recommended for a “Mild Vestibular Disorder;” it was also horrible and I couldn’t do it in tandem with other treatments my Doctor recommended at the time. The Mayo Clinic staff say that their approach is different so I decided to begin their PT and OT home programs regardless. What if it helps? In 3 days since then the convulsive episodes have not yet changed but my balance is improving! Yay!
I don’t have an autoimmune disease as defined by the Mayo Clinic. My labs are also negative for various infections and inflammation, glucose and other markers for which my blood and cerebral spinal fluid were tested. But some other labs are waaaaaaaay off and those are the ones in focus right now. If I can progress in my home exercise program, and I suspect that I will do so quickly, I have the option to return to Mayo Clinic for a 5-day intensive Functional Movement Disorders Program. Perhaps within a couple of weeks I will know if this Program will be effective for me: if the techniques begin to change any aspect of the episodes then, Lord willing, I hope to return to the Mayo Clinic. By then my thyroid status should be moving in a better direction as well. It’s all good I guess.
Funny how enduring very early morning appointments under duress in a strange place with 1-2 hours of sleep painted a much different picture of me to these clinicians than what I am presenting now! Tonight I still feel depleted yet my stress level has gone down significantly. All of the laundry and unpacking is done along with the myriad of things you have to do after returning from a 9-day medical trip. (Our trip to Mayo Clinic was extended twice to complete all of the consultations recommended and requested.) The expenses were immense and we haven’t even seen the medical bills yet! (Did I mention that the water heater needed replacing 3 days later? Ugh.) Still I am stabilizing and in a better place than when I was struggling to just breathe 2 weeks ago.
The seasons are about to change and the gears of treatment planning for me are moving forward as well. Gentle Reader, you know my mantra will remain that Lord willing, I am going to get well! And to Him be the glory! I am grateful that Steve and I got to go to the Mayo Clinic and learn so much on so many different levels. What other levels you ask? Well that will be a bit o’ prose for another day of course. Until then Godspeed my friends, JJ