Who gets this?

Don’t be this gal!

There have been many times when skills above being a “patient” have helped me navigate the mess that is our American healthcare system. While I am better understanding what it means to be pre-diabetic for example, I am convinced that it takes at least some college education to get the basics done! The following skills are critical.

Organization

Get lots of manila folders in January every new year and label them by categories that make sense to you. For me that means Medications/Supplements, Clinical Summaries, Insurances, Test Results, and one for any new, major diagnosis. Then I have a master notebook with the latest test results that I developed in preparation for a comprehensive evaluation at the Mayo Clinic. While most major healthcare organizations have online patient portals with all of our test results, sometimes your provider (Doctor or other skilled professional) will not be able to access them. Streamline each medical consult by having copies of pertinent reports with you at each appointment. This is particularly true when crossing over from one healthcare organization to another to see a particular specialist. GET YOUR OWN COPY of scans on DVD and go to medical records for the paper reports after each major test, test procedure, or medical procedure. Consider scanning them into Word files for when you are communicating with providers online. Searching for test results on your smart phone via the respective organization’s patient portal could be helpful but you will waste precious time with said provider. Your appointment may be over by the time you log in and access the data!

I first learned about organization when organizing ceramic molds for an occupational therapy department in a mental health hospital as a high school graduate. The patient groups ran more effectively thereafter and my supervisors were thrilled. As time went on it became clear that my love for office supply stores, blank CDs/DVDs, then little thumb drives were good things.

Put Stuff Away

For us, each year of non-medical records gets put into the same box as the same year of tax records. We keep only the past two years of tax record boxes in our home office and the rest go into the attic. After seven years the boxes can get shredded, burned, or otherwise destroyed (if we ever get around to it!). Pertinent folders relating to test results and medical conditions get filed in 4-drawer file cabinets that are alphabetized. Yes, this includes if our files spill-over into more than one file cabinet (as we have 5 of them!). A to C now takes up just one of these cabinets and may change when folders that are no longer needed will get purged. Yes, we don’t buy more file cabinets anymore; I just purge outdated information at least annually and especially when there is no more room for new records. Think it is outdated to worry about paper records? I disagree. There will always be important mail, receipts, reports, legal documents, and other pieces of paper to manage.

Any documents stored on our desktop (or laptop if we had one) should get dumped into an extra, external hard drive (our preference). These can be programmed to backup automatically weekly or to a cloud service in real time.

The importance of filing paperwork for quick access became a critical asset just 2 months ago that could serve to extend my life. I was filing some CT scan reports one weekend when I noticed that NO ONE had followed up on the finding of a new pancreatic cyst. This type of finding requires swift and specialized follow-up which began two days later. I am now in a 6-month surveillance program to make sure the particular type of cyst does not advance into cancer (that is highly fatal). Keeping-and-following good records is as important as the healthcare you seek and doing so could save your life!

Take Notes

We all probably have our favorite place to record information, whether it is on a smart phone app, calendar, daily planner, etc. The key is to be consistent: use the same method all of the time. My Mom was the queen of taking notes on partial slips of paper scattered on the back half of the kitchen counter! Her address “book” was a drawer beyond the sink filled with torn corners of paper, some tucked into the address book with a rubber band around it and some just stacked above or below it. She took out the piles each December to write her Christmas cards and vowed to update the address book before the holiday returned the next year. She never got it done. It was through these handwritten notes we combed when she passed away to make sure that important people in her life were contacted. And it was only then that I came to appreciate seeing her penmanship on pages yellowed, torn, stained, and re-used, that her system really did work for her over her entire life.

Date everything. Write down who you talked to and the phone number you called. Record the prices quoted, deadlines, and most importantly: what to do next. This way the next time you see your note-taking system on a particular topic, you can pick up and continue where the activity last ended. My Mom was an office manager and would probably find me to be a bit compulsive to include all of these data points in my note-taking and filing systems. But I submit to your that our healthcare and the complexity of life require it these days.

I learned the importance of good note-taking when trying to get some specialized cranio-mandibular care covered by any one of 3 insurance companies. I spent dozens and dozens of hours with what became a 2-inch thick folder of notes, letters, and statements accumulated over a year and a half to account for over $5,000 in out-of-pocket charges. I just knew that if some of the charges were coded correctly and sent to the correct payer, we could get such specialized care covered. I was wrong. We have received around $300 in reimbursement! I didn’t know that nearly all of my efforts would be wasted when the original provider offered to help but would not bill insurance directly . . . then did bill two of them . . . using either incorrect or out-of-date codes . . . over and over again. It was a nightmare for all of us involved.

As I write this, there’s a pile of 5 1/2 pages of billing statements, flyers, and notes stapled together and sitting next to me covered with handwritten notes regarding some new medical equipment. So the saga continues yet already I have had $20.28 in charges reversed. Along the way I asked to talk to a supervisor. Yes, I’ve learned who gets what done, aided by my 30+ years working in healthcare myself followed by 8 years of battling a serious illness and its subsequent paperwork. Organize, put stuff away (but not without looking at them first and periodically thereafter) and take notes. Then blog about it or comment below. I’d love to hear from you Gentle Reader. :JJ

Navigating the Mayo Clinic

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!

Expansive receiving area inside the Mayo Clinic and Gondo Building

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.

First Day

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.

Ongoing Tips

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.

Just Breathe

The stress is crushing

Into my chest, my frame in flare

Old issues still wanting to be a friend

Screaming with the new ones, a symphony of suffering.

The stuff of life

Crowds every moment and then

The smart phone dies and hours are sucked up

In this Verizon store, that kiosk, then hours with online tech support.

My checkbook sighs

From neglect then a balancing act

Or nightmare as the expenses of preparation

Smell poorly like the “unscented” shampoo at the dog groomer!

Alas I confess

I have been here before:

A medical trip on the horizon

Brings hope but making it so: invites a nightmare.

For how does one prepare

With a brain on fire and infections too

Each vying for attention in the hours that remain

Before departing to the fabulous Mayo Clinic very soon?

Just breathe little one

The one inside that is afraid

Come to my rest my Jesus calls to my heart

Lay here your worries, your burdens; the time remaining is mine.

How fitting after Valentine’s

When I barely got to see my amazing love

That the Author of love would also come to my rescue

And all I have had to do is let go: let Him add the increase for the rest.

The rest. Hear that!

For the opening of this door

Was ordained for this season in life

The last medical records will arrive today. Go take a nap already JJ.

Countdown to Mayo

I’m kind of freaking out over here. No really. You would think I was preparing to go for the biggest medical evaluation of these 8 1/2 years battling a serious illness, or something. Well maybe I am!

The little city that comprises Mayo Clinic: most buildings and surrounding businesses are connected via the underground Subway Level. You may never have to go outside in the cold!

Some of my medical conditions have flared a bit lately, requiring medication and distracting me from my primary goal at the moment: preparing for a consultation at the famous Mayo Clinic. I have SIX medical appointments this week alone, FOUR next week! Gratefully, the locations of these appointments have put me in the proximity of places from which I need to gather medical records; one of them proved to be timely in addressing the flare-up of an acute, stress-related condition: shingles! Thank the Lord I caught that one early! Ugh. And just about everything related to my care will have been updated by the time we leave for Rochester, Minnesota: the biggest snow belt of the United States of America! Not that I am stressing over that one as well? Maybe so.

My beloved is both helping and complicating the process with his energetic ideas, last-minute plans, and on again/off again pursuit of a better, new-used truck. Turns out we are letting the last one go for now. Yay! There are always extra expenses and things to do when you make a major purchase. Now is not the best time for us to buy a truck! We really need to think through this purchase a little more, focus on our trip to the “Mayos,” and get some other proverbial ducks in a row. Steve will still be off working hard and doing his various activities in the meantime before we leave . . . seeya for dinner or at bedtime when you return home my love. (Yes, we still have a very late household.)

What’s left to do:

  • Receive the medical records from the Doctor and 2 hospitals I have visited the most.
  • Organize and condense hundreds of pages of test results into about 50 pages, labeled in some meaningful way.
  • Confirm arrangements with the hotel who promises NOT to use fragranced products in our room prior to our arrival. So bummed that an Airnb didn’t work out nor the Serenity House Network.
  • Pack WARM clothing, dog food, new dog medications, numerous supplements and medications for me, and enough food to get us through the first few days in the northern tundra. Gratefully our hotel room will have a kitchenette; it’s too frigid for our usual mode of camping via our “mobile clean room.” Most important on the packing list of my beloved: cross-country skis! I may take my snowshoes as well.
  • All the other stuff you do when away from home like laundry, placing he mail on hold, watching the weather here to have the snow shoveled when we are away, watching the weather there to confirm suitable road conditions, and the like. Should be less work than camping for sure!

While this process is exceedingly stressful when still battling a serious illness with bad convulsive episodes virtually every day, I am exceedingly grateful for the opportunity to got to the Mayo Clinic. Thank you Lord! It’s rated the best hospital in America! The top Doctors in the area of autoimmunity and neuroimmunology conduct research and see patients at the Mayo Clinic in Rochester. I have heard first-hand from some of my new Doctor’s patients and they state that he provides excellent care. Yay!

I am also glad that I did not go the Mayos 3 years ago when I was looking for new answers to troubling medical questions. Since then, we have further tested and treated for Chronic Lyme disease, lowered my burden of heavy metals, healed from various dental procedures and treatments, investigated numerous other potential infections, addressed/ongoing orthopedic issues, completed a comprehensive cardiac work-up, and even received genetic testing and coaching. It’s been a busy 3 years! All of these conditions could have explained this horrible illness but they did not. Good news: I can now tolerate more of the supplements and medications that are needed to re-build my health (which was impossible to do without triggering convulsive episodes in the past).

My prayer has always been that something of value would come from over 8 years of daily struggle. The Lord has been faithful to see us through even the darkest hours where demonic influences were palpable, suffering greater than I can even describe. Both Steve and I have been tested beyond what we thought we could ever bear yet the Lord has met us, sustained us, even carried us. There were sweet moments along the way that served to encourage us. We understand that others have been encouraged by our testimony as well. Yay God! Overall, these past 3 years preparing to go to the Mayo Clinic certainly were not wasted, that is for sure. It’s time to rally for a cure.

Let’s hope so, eh Gentle Reader? We are hopeful again! JJ

It’s just not the same thing

good, bad, perspective, Christian, surrender, letting go, in Christ

Dinner out with family celebrating from 3 states or an Asian wrap alone at the messy table where you finally were allowed to finish your holiday activities with some kids . . .

A rental car authorized by your insurance company while the truck gets repaired from the deer or a silver beast machine that at least doesn’t reek like a fleabag hotel . . .

An upset stomach that lingered for weeks or a working diagnosis of a peptic ulcer that reveals that the stress was more than just a little of late . . .

A cold sore that just happens from time to time or a flare of wretched shingles caught in the beginning stages, THANK GOD . . .

The stuff of life making a rough landing all at the same time or a financial train wreck in the making as Christmas gift-giving rapidly approaches . . .

Tears of frustration from “not good enough” criticism in a new editing role giving way to compliments from out of no where just 3 months later . . .

Doubts of your acceptance in community volunteer roles with new folks who don’t know your history to appreciation for being part of the team . . .

Missing my husband dearly as he is away travelling to the non-starter reunion when having to practice extreme mold avoidance still . . .

Tears of grief from so very much loss shaking my fragile frame to the bone to a slow recovery days later with a few convulsive spikes here and there . . .

Powerlessness to minister to my brother who suffers post-stroke much greater than I to finally figuring out something I can send him to really help . . .

I really could go on.  It’s just not the same thing when things really do go from bad to worse and you wish you had not feared for the worst because things can really go either way . . . and sometimes they actually go better than expected.  It’s all a matter of perspective in the end, right?  Ugh.  Clearly I am witnessing both phenomenon.  Really makes for uncertain living, I tell ya.

So what shall I do?  To stay in the moment as best I can is what I shall do.  Nap when I can’t concentrate anymore.  Pet the pup for more than a moment ’cause she likes it too.  Do something nice for my beloved Steve.  Move my Bible to that more secluded spot where I can spend time with the Lord without as many distractions.  Dwell and pray, pray and dwell in the presence of my Heavenly Father Who can lift my spirits above that which troubles me each day.  I have given myself over to worldly worries and it is not the same thing as giving it all over to Him.  I surrender.  I don’t know what got broken that I landed here but at least this one I do know how to fix.  Lord willing, things will get better!  JJ