Changing seasons, changing gears

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

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.

Prayer Request

Gathering medical records and other documents, making travel arrangements that accommodate my sensitivities, and putting together a timeline of the serious illness I have been battling for 8 1/2 years has been an emotional process for me. Just surviving to this day has been a traumatic experience. The blessings are there too yet not as clear right now with the hundreds of sheets of medical records behind me as I type this post.

I have endured so many dead ends and dashed dreams for recovery, physical damage from thousands of convulsive episodes, tens and tens of thousands of out-of-pocket expenses, and so many losses on every front of our lives. One truth is clear that I would not have survived this far without my faith in our Lord, Jesus Christ. He was my Rock when my breathing would not start in the darkness of night or my legs would not move to get me to the bathroom. Both my beloved Steve and my Lord carried me through it all to this moment in time.

Regardless of what has gone before us, Steve and I are pressing forward, hopeful for a good result at an upcoming consultation at the Mayo Clinic. For the first time since the onset of this serious illness, I get to see one of the top Doctors in neuroimmunology at THE top medical facility in the country. That is humbling. I am grateful.

Now is the time to pray for a cure to the daily convulsive episodes. Lord willing, I will be well! Thank you for your love and support, Gentle Reader. Love to you, 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

The salesman we never met

Car salesman get a bad rap. Sometimes they are just too funny for words. Or is it pathetic? Not always, of course. You decide!

My husband, Steve, and I have been researching the possibility of purchasing a new-to-us truck. While not a necessity, a full-sized truck would make pulling a travel trailer easier-and-safer, enduring the longer trips more comfortable for me, save the time that is now spent filling up the gas tank of our current truck every 150 miles, and set us up for potential needs in retirement. Eeeek, I said the R word! This process of shopping has taken us online all over the internet and the country east of the Mississippi River. We have narrowed down the financing, make, model, and features that would work best for us. So we decided to ask for more information on a few vehicles . . .

If you ask for more information on an auto-trader type of website, the person who responds may or may not know anything about the vehicle of interest. A pop-up screen appears with the picture of Natasha, Megan, or some other cute gal, inquiring if we would like to “chat more?” Every time I have typed in a question via this method I am literally tricked to give some level of personal information before the mystery writer on the other end disappears to “ask a salesperson.” Virtually never does a complete answer follow but a notice that a real salesperson will call you SOON. This is true whether it is a Saturday night (and dealerships are closed on Sunday) or the wee hours of the morning! Good news: someone usually does call you back! Bad news: this will be every day for the foreseeable future until you block them! Sish!

If you happen to send an inquiry on a vehicle directly through the website of the actual dealership, the experience might be slightly better. Only problem is that you never really know to whom you are communicating. “Kami” has been calling us twice per day since we inquired about a truck and the inventory at the dealership where she works but she never really knows information about it beyond what we can both read on their website. Surely she’ll get back to me twice per day on Monday . . . and Tuesday . . . and . . . I think she is working from home somewhere remotely. At least she speaks fluent English!

Forget just showing up at a dealership and seeing what they have on their lot to take a test drive. In our town, the local dealership of a prominent automaker does not have any new or used current models on its lot of the type in which we are interested. NONE! No trucks! (Well, except for the 3 year-old model of an outdated style that reeks of cleaning and air freshening solutions! More about that one in a moment.) So it wasn’t until my husband decided that maybe it would still be nice to deal with someone locally, perhaps ordering a vehicle from somewhere else to be delivered to the dealership nearby, that we learned just how crazy this sales process can be. Let’s say the salesman’s name is JS.

JS got my husband’s contact information from a car-finder on our insurance company’s website and Steve filling out a form requesting more information. I called and someone said that they had a few trucks coming in a few days. The website of the dealership didn’t reveal that they had any trucks in their inventory, but when Steve called, his salesman said there were THREE TRUCKS being delivered by the weekend. “Would you like to come in for a test drive? Saturday afternoon at 1?” He said he would call if the trucks came in but never called back before the weekend. We headed to another dealership out of town instead.

Then JS called the next week to say that he had found the perfect vehicle for us in Cayenne Red (my favorite) with every feature we were seeking! He listed them one-by-one during that lengthy conversation. Was JS reading them off of the manufacturer’s brochure? The price was $9,000 above our top figure but he was still asking us to make another appointment for a test drive. Of course he was. Steve agreed when JS stated they could make some concessions on the price. The following Saturday afternoon we went to go meet JS.

We arrived at the dealership after stopping at a car wash for my Nissan Frontier that we might offer as a trade-in. We were kind of excited to be working with someone so close to home (as our hunt for a truck took us away from home for 6 hours the previous weekend) and what our negotiating skills might yield. As soon as we walked in the door, a young man sharply dressed in a wool overcoat greeted us and asked if we were here to see a Nissan Titan. Wow, yes we are! They knew we were coming! The only problem was that JS was with another customer and not available at that time; would we like to take a seat and wait? We asked to see the fabulous truck. This man would check into what he could do. He didn’t think they had any trucks that fit our description in their inventory though. We did not see any either.

The circus that followed was shocking at the time and rather comical to us a few hours later. A quick look around the showroom at this point found other young and middle-aged sales folks circling around as if sharks in dark waters searching for their prey. An older saleswoman drifted by, looked out the window in front of us, made small talk about the weather and the yard work she needed to finish, and thus consumed another 5 minutes of our wait for JS. The first salesman came over again then the “Manager” who was dressed more like a middle-aged model for GQ magazine than a car salesman working on a Saturday. He confirmed what the first man had revealed that there were NO NEW MODELS but he could show us a USED CURRENT MODEL if we wanted to see it. We were at the beginning of an acute case of shock yet agreed. What is going on? We said little between us.

An older black Nissan Titan appeared outside the glass doors nearby. It was not as the Manager had described and certainly not a current model! We had expressed early in our conversations with these sales folks and every other salesperson with whom we have consulted that the vehicle could not contain artificial fragrances of any kind. New car smell is one thing. Synthetic fragrances in a newer-used vehicle we test drove the prior weekend sent me into a 30-minute convulsive episode requiring prescription medication to stop it! The illness confounds the vehicle-buying process for sure but hey, we are in no hurry. This point is a deal-breaker, however.

Mr. GQ quickly re-appeared and conceded that the truck out front was a year older than he had initially stated, was his own demo model, and smelled heavily of fragrance. Hmmmm. THE MANAGER didn’t know the year of the truck he personally had driven for awhile? We appreciate that he at least disclosed about the fragrances. He suggested we come back later and we wondered why we would do that? Out loud we politely declined his suggestion; he shook our hands, thanked us for coming, and we left our local dealership. The cool, fresh air outside snapped us back into reality. What had just happened? We’re not entirely sure but being bamboozled is a part of it!

But wait, there’s more! Steve and I were still having a nice time together that afternoon which was a delight given the ravages of the illness that I have been battling for many years. We decided to head to our local YMCA walking trails for a hike then later have a nice meal at a fresh-foods type of restaurant that had recently opened. Somewhere within the next hour or so, came the rest of the story.

JS emailed us at 3:47 pm, stating he had just received our appointment confirmation from hours earlier and asking if we still wanted to come over to the dealership to meet with him? Um, we had left there around 3:30! Unbelievable. Inconceivable even! Was he saying that the FOUR salespeople we talked to in total did not let JS know that his customers had already been there for the appointment that several salespeople knew about when we walked into the door?  Did JS not SEE the black Titan parked right outside the front doors and wonder who else was taking a look at it? Oy vey, we had to laugh out loud on this one!

Steve and I live in a smaller town and really try to support local businesses, even the national chains that might be owned locally. Our experience with multiple corporate-owned dealerships hasn’t gone that well, however. Tough to support the families (oh yeah, this line is a tear-jerker) of car salesmen who don’t treat you right! Did I tell you the story of another truck salesman 6 months ago who tried to sell me a model with the year-and-features that were different from the one he said he had on the lot for me to test drive? (They had just dropped in a bedliner that morning for me. How nice. But why then was it dirty?) Or the salesman at the dealership we visited last weekend who said they could treat their otherwise perfect vehicle for fragrances and would get back to us? He even called back to update everything then we never heard from him again. What happened?

Perhaps the title of this blog should be, The case of the still-hungry salesman. Strike 2: 2 weekends in a row these dudes have gone AWOL and that is o.k. with us. Perhaps their blog about us would read, The case of the challenging customer.   That is o.k. with us too. Regardless, these are what you would call “first-world problems.” Life will go on despite the sharks in the proverbial waters of unsavory car dealerships. Thankfully, all car salesman and dealerships are not like this. We have a Christian friend who sells older used cars quite honorably. I just hope if this truck purchase is meant to be for us that we don’t meet anymore shysters like the ones we have encountered thus far. It’s o.k. if they try to wheel-and-deal, even post something online for sale to create intrigue (but not like another dude that claimed he was selling “by owner” when it was really “by dealership!”).

Next! Treat us dishonestly and you will never see our signature on the dotted line. We will go AWOL too! JJ and SH

car salesman, story, sales, woman, shyster, things go wrong, truck, purchase
‘Let’s get one thing straight. I don’t want your money, I want your respect.’