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 . . .

We survived our Christmas holiday

He suggested a restaurant, I located a coffee shop, we could save money by making our own food, then 4 of 10 family members cancelled, so a local brunch place it would be for our family Christmas gathering!

I intended to meet up with them that Sunday the 23rd but the old beast I battle interfered then lo within hours they were in the driveway and headed to the backyard just moments after I’d made it out of bed! Thank the Lord I’d showered before my recovery nap; the gals had dressed in warmer garments so their greetings on the Wintry patio meant I could see my beloved’s wonderful adult children after all.

The gifting seemed awkward but we were generous all around anyways then whammo it hit and seizing returned body-wide in full view, right there in the open air: my winter coat and silent eyes all around me. Some had not witnessed this hell before . . . what the hell? I prayed as my body shook violently and slumped down into the lawn chair, with me still wondering why I have to be awake to try to figure out what I am supposed to do during these nightmares when I can do nothing at all?

A plan came to mind and when my body writhing stopped, I dangerously dashed for the sliding glass door whilst screeching from my loins how horrible this is, my deepest sorrow, and my love for them all. I still dunno if anyone heard my guttural tears that began as I closed the door and lasted for the next hour with episodes that returned as I dragged my body back to the bedroom to crash. Again. Then I wondered, where was Steve?

Sounds in the background told the story that they had all left, including my beloved, with them . . . No one had brought me any food (I guess I was sleeping earlier when they were eating lunch with the live Christmas band delighting their visit), said good-bye, or showed any concern for my welfare . . . until 2 of them texted me messages of concern hours later. Ah, the days of living by the (inadequate) communication of our smart phones! It was all I had so it was something I guess. Steve returned a couple of hours later to tell me they had gone on with their plans of go-kart racing. The pictures on Facebook told the story of the great time they had. Do I want to see them? Say what?

This type of unexplained episodes continued, preventing worship at a Christmas eve service the next night so I braced myself to spend it all alone. How could I possibly hold my husband hostage at home with me when a couple of his adult children remained in town? Extreme chemical sensitivity was about to take him down as well when he got to the church and it reeked of burning frankincense so badly he could not stay inside the building. So we watched the services together online at home . . . Silent night, holy night.

Christmas required extra rest before a simple celebration with my beloved: no decorations or fancy foods just some gifts and an appreciation of the meaning of this day that was more apparent for me this year than decades ago. Simplicity does that. Christmas is measured in moments, however small, when you focus on the love that comes from our Savior, Jesus Christ. The traditions are lovely when you have them too. I tried to be positive and loving to my amazing man who has been faithful through so much heartache and sickness from me. How can I possibly sweat any small stuff when he always gets the big stuff right?

Little did we know that we would both become very sick with the flu within 3 more days. We had an errand to run together, at the end of which my beloved was already fading with illness. I joined him within a day and gratefully after some cleaning and making a pot of soup for us both. We still had not gone grocery shopping which didn’t matter since neither of us could eat hardly anything. That didn’t change much as the worst of this flu lasted FOUR DAYS!

Steve has started to surface back into life as he did some online studying; today was my first day I could stand in the kitchen long enough this evening to roast some chicken apple brats in the oven. Yeah, finally I wanted to eat a little more again after incredible pain and nausea lead to the loss of 3 pounds. I started to talk in complete sentences today while bracing my neck, rib cage, and abdomen when out of bed, yeah, afraid of making worse the new hiatal hernia and gastritis diagnosed 2 weeks ago. Can you say “I feel like a basket case?”

By the grace of God we survived our Christmas holiday. My beloved spent half of his vacation time from work battling the flu and barely seeing his adult children visiting from out of state; I never really recovered from this whack-a-this-or-that. This Winter illness is going to take me a few more days from which to stabilize . . . but interestingly the seizure attack episodes that flared at the beginning of our holiday week are down again. Yes, they are down! I have just found a way to take some nutrients that have been critically and chronically low and which are likely a major contributing factor to the convulsive episodes. To become seizure-free would be my desired earthly gift this new year. Thank the Lord we made it to 2019!!!!!!!!

We have been here before, you and I, Gentle Reader, dozens of times with my stories of hope and heartache and hope and heartache again. Call me a Weeble that Wobbles but she don’t fall down, I guess. Are you hanging in there with me too? Jesus makes the overcoming all possible in the end you know. (Please excuse my wee bit of humor, my Lord. Unlike me, you never falter.)

Gentle Reader: I pray that you did a bit more than survive this Christmas too. Happy new year? Oh yes, happy new year it is going to be! JJ

Tough and Tougher Still

Another injection of Prolia behind me for osteoporosis: Six weeks late due to having to change Providers and get re-authorization.

Nursing Supervisor administered the injection instead of the CMA as a precaution after discussing my history with these thingies.

One hour continuous convulsive episodes followed whilst clinging to a raised treatment table, fearful of falling off. The PRN Prednisone did nothing.

Nikki, the very sweet Nursing Supervisor, stayed with me in the dark, closed room for the entire time. I rarely get that level of supervision during an episode.

Sat in the treatment room for 30 minutes more to make sure there would be no mo rebound spikes.

Sat in the lobby for over another hour trying to stabilize to drive home, nauseous, weak, exhausted, pained. Thank God for a little HGTV on the monitors!

Cancelled plans to grocery shop. Gently drove home with a bad neck headache, etc.

I reek like cheap fragrance from that place. Time for a shower and as much sleep as possible whilst nursing the cold I am catching from my beloved Steve.

Wondering if my reaction was worse this time because the injection was 6 weeks late. (Delays also can increase the risk of fracture.) I worked really hard to get this done on time but it is the insurance company who literally “calls the shots.” Glory be, I will be doing this again in 6 months!

Let there be no mistake: if I did not have my faith in the Lord, Jesus Christ I would have given up by now! He sees us on our bed of sickness and weeps for our suffering. Always remember that our God reigns and I continue to trust Him. His mercy and grace, sustaining power is REAL. I lay down my sword and let my God fight for me. Lord willing, this 7 years of hell on earth will end; even if it doesn’t end I trust in the hope of eternity when all will be made right and good. Lord help me to be faithful in this difficult calling and thank you for your promise of restoration, of Your blessing one day. To God be the glory.

Gentle Reader, He will meet you where you are as well and carry you if necessary. Lay down your sword and let Him be your tough guy! Believe this day!

Just Julie

God gave me you

Nor ordinary Christmas we had this day

Sleeping in then slowly moving into life out of necessity more than design.

Broccoli for my breakfast and handfuls of granola for my man

Brought us to our traditional reading of Isaiah before revealing our worldly gifts for I and you.

Who paddles a new long board down the hallway

But two middle-aged lovers holding onto our respective gusto of life?

A rest time had to follow for me again

Not as unusual as the waking episodes that have returned changing my hopes for the day.

Perhaps we would visit or do something fun

Yet return to my bed of sickness I did go for a most unfortunate interlude.

When your husband holds you from joy to sorrow

The same day seems surreal: later he feeds you medicine whilst you seize.

Siiiiiigh. Not that old tune returneth even today

For chronic illness ne’er takes a holiday when you want it to my dear.

This did not matter to you: your love never fades

And my greatest gift revealed its beauty the ten thousandth time: it’s you!

I could never conceive of this way that you have

To give beyond your self with a gentle spirit, still manly all the same.

You spoke only of my rest to your family on the phone

Preserving my dignity when I could barely feed myself with fingers weary from the beating moments before.

Yours is a love from the Father, the Son all in One

The kind that sustains you through trials when Jesus comes near with skin on.

He made you for me oh I am the blessed one

I pray he loves you back tenfold for the task of loving me well done today my love.