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.’

New Year, New Direction

Like many times before in January these past 7 years, I am seeking a new direction for my medical care as a serious illness continues. A recent autoimmune blood test found antibodies for a particular type of central nervous system disease. So of course we are off now pursuing the next big thing! Here’s an initial brain dump on the subject (absolutely no pun intended!).

Autoimmune disease (AD) is a disease in which the body’s immune system attacks healthy cells. There are up to 100 different types of AD (depending upon which resource you use) and 3 triggers that I can discern that initiate the onset of symptoms:

  • Gene expression that gets turned on. This is where your have genetic markers for a particular condition coming from somewhere in your family tree that starts to express itself as active disease when triggered by stress, infection, toxicity, or some traumatic event.
  • Infection by bacteria, fungus, or viral agents. This appears to apply when the infection is severe or chronic.
  • Cancer. This may be a chicken-or-egg type of dynamic where a patient may never know what came first.

Docs have diagnosed me with a few conditions in the past that may be considered autoimmune disease. But it wasn’t until my Doc finally decided to start testing me for AD antibodies (Cyrex Array #7) that something concrete was identified and it is serious. The condition mimics a neurological disease that my Father had. The biotoxin illness that triggered my 7 years of chronic illness (beginning the same year in which he passed away, interestingly) and subsequent infections may also contribute to my situation. Thankfully, no cancer has been identified so we will stick with the first 2 triggers as entering me into the AD phase of my long term treatment plan.

So I started researching as usual and discovered two primary approaches to neurological disease in general: 1) manage the symptoms of a debilitating, degenerating course, or 2) treat it with immunotherapy and medications that have the potential to reverse its course when there is an AD component. My Doc suggested continuing various supplements and physical therapy. A second Functional Medicine Doc suggested a “functional medicine chiropractor” and a neurologist who specializes in Parkinson’s Disease. Of course I will consider these but I am also not going to wait around while my body deteriorates without seeking something more substantial! Fortunately it appears that for me, there may be medical treatment options including what is called IVIg that have the potential to REVERSE THE EPISODES THAT APPEAR SEIZURE-LIKE, VIRTUALLY EVERY DAY FOR NEARLY 7 YEARS!  Yes, let’s do that!

Yesterday I set up an account and submitted a brief case history for review by the Autoimmune Clinic at the Mayo Clinic in Rochester, Minnesota. Their neurologists specialize in neuroimmunology, participate in the latest research, and are willing to initiate trials of immunotherapies and medications to help their patients. I had contacted a couple of researchers directly, consulted the leader of a regional support group, watched lectures and interviews, and reviewed the literature on the factors relevant to my case. “Time is brain” and “time is cerebellum” appeared several times in the studies, suggesting not waiting around for something to happen. Overall, this field of study is very complex; I believe that I understand the main principles enough to share with my beloved Stevers and, as one accord, proceed in this new direction in my medical care.

As with anything new and complicated, there are many unknowns ahead of us. Will the neurologists accept my case and when will I be able to schedule my consultation, testing, treatment? How much, if any, will my insurance cover? How will I tolerate a lumbar puncture procedure likely needed for comprehensive diagnostic work-up even if administered under anesthesia? Will we be able to pay for the travel and out-of-pocket expenses that, for immunotherapy, could exceed tens of thousands of dollars? Can any of the treatment, if indicated, be completed locally and how many times will I need to return to Mayo Clinic (a full day of driving away from home)? In the winter when it’s too cold to camp, will I be able to tolerate staying in a hotel often laden with fragrances that trigger convulsive episodes? Will our aging and endearing pup Elle be able to travel and stay with us?

You know we are praying about all of these questions already! I am a bit frightened by the diagnosis I have been given, having worked with persons with movement disorders during my career as an Occupational Therapist. Yet I am also in awe that this information came NOW and not 3 years ago when I first considered a consultation at Mayo Clinic. We have learned so much since then, ruled out other conditions that don’t apply to me, treated conditions that put me in a better position to benefit from an Autoimmune Clinic, confirmed that this illness is not psychiatric, and know the process of travelling for medical care (as in my craniomandibular specialist whose care continues).

I feel like the expression on Elle’s face in this picture. Three paws in view and one paw under the rug with the unknowns lurking underneath there as well. Will there be Rubber Duckies or sweetness from the Lord to lighten this journey? Surely. Each phase of this time in my life has brought blessing with the hardships. Besides, you know I love road trips with Steve! And Elle!

Hang tight Gentle Reader. We may be headed north really soon! JJ

The things we do for some sun

We’re home from our whirlwind trip to Florida that almost didn’t happen so soon after being diagnosed with new gut issues then battling the flu followed by it’s aftermath for 2 weeks thereafter. We did it anyways! Four long days of driving for 3 days in the Sunshine State. Here was our itinerary:

4:00 pm January 9th decide to pursue reservations and plans to go to Florida; finish seemingly endless packing, food and other preparations.

2:00 pm January 10th: Elle pup is the first in the truck as we depart Huntertown, IN for the campground south of Atlanta. Arrive around 2:00 am.

1:00 pm January 11th depart for Seminole, Florida. Arrive around Midnight. Set up our campsite at Bickers RV Park.

My mobile clean room amidst the palm trees!

9:00 am January 12th was Steve’s first day of the USCA Annual Meeting. I rested from various convulsive episodes en route and travelling.

6:00 pm we make our way to the banquet at a seaside restaurant. Had episodes later yet I was grateful for a dinner out with my beloved Steve.

8:30 am January 13th: Steve heads out for the wrap up of the USCA Meeting, lunch, and paddling 6-man outrigger canoes on the ocean. Great fun!

11:00 am My day begins with self care, laundry, doggie care and some time sitting outside. Some restoration begins, however convulsive episodes persist at night. Make pre-planned dinner anyways and prepare for appointment tomorrow.

10:00 am Appointment with Craniomandibular Specialist, Dr. Ralph Garcia, for adjustments to dental appliances. Begin to question where the 80% improvements of last year have gone? Drop off thank you gift to a friend, lots of driving in the Tampa area, and fit in a 45-minute walk along Clearwater Beach before returning to the campground. Even 60 degree weather could not keep us away! Episodes were discouraging to both of us later that night.

11:30 am Pack up and depart for Chattanooga, TN. Arrive after midnight. My Nissan Frontier is a workhorse yet requires stops for gas every 110 miles! Elle pup made the entire trip nicely.

1:30 pm Pack up and re-winterize Camplite for our return to freezing temps back home. Depart for Huntertown, IN by way of Nashville.

3:30 pm EST meet up with Steve’s sweet daughter, Rebekah, for early dinner. Ramp up of convulsive episode at older Thai restaurant prompted me to leave, scramble to the truck, and take some Prednisone. Episode resolved (meds prevented further episodes later on this night), so we head to Panera Bread across the street for a nice visit. Got back on the road around 6:00 pm.

3:00 am arrive home and start unhooking the travel trailer, unpacking, decontamination procedures, urgent laundry. Grateful for the ability to do all this work on a short night of sleep followed by long days of travelling. The Lord added His increase once again!

5:30 am: heading for bed with prayers of gratitude for safe travels, the Lord’s provision of this trip, some sweet moments, and fewer symptoms between us of the flu/cold that began 3 weeks ago. I’ll spend the next week cleaning the Camplite, doing laundry, restocking, and reorganizing as required when camping in our “mobile clean room.” Maybe I’ll get to finish 2 sewing projects for the bunks soon too?

How amazing it is that I got to go to Florida! “Warm sunshine” is very therapeutic as is getting a change of scenery. Yeah God! I love travelling with my Stevers. My heart is filling back up again . . .