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 Trip That Wasn’t

The best plans with reservations and all

Lain ready for some last minute cooking, packing, and prep

We would camp in the rain in a humid State down south

And see my Dentist, my Aunt, and maybe a friend.

But as much as we tried to make it all happen

This trip was simply not meant to be this time around.

Ten days ago I got pneumonia and treatment began thereafter

Oral antibiotics then IV infusions of same

With more drugs than I care to mention to manage the symptoms.

I had forgotten since my last bout with same in 2009

Just how dangerous and devastating a lung infection can be.

So rather than risk infecting my Aunt with her own health issues,

And delay my own healing with the rigors of 4 day-long car rides

We won’t be going nor helping out my Aunt until much later instead.

This isn’t really a poem, just some prose to get it out of my head

I am exceedingly disappointed, confused, and not sure what to do instead.

Rest of course.  Try to get our home back in order from being away at the hospital each day

Let go of the questionable care from nurses who didn’t know or care that much about me

And rekindle the love with my River Bear who makes it all alright anyways.

How can one make sense of plans gone awry:  it just doesn’t seem right

Well my Lord’s already there, so in Him I will trust.  He’s had my back every other time!

JJ

 

2013 Livin Lite Camplite 16 DB for Sale!

Camplite, Livin Lite, aluminum, travel, trailer, camping, camper, available, mold avoidance, clean, chemical free, avoidance, sabbatical

 

As we explore our options for some upcoming changes in our lives, we are placing our beloved Tin Can Ranch up for sale.  This Livin Lite Camplite 16 DB is virtually mold and chemical free making it ideal for folks who are taking a health sabbatical or travelling with persons chemically sensitive.

Here is the listing.  Please contact me below with your email address with inquiries.  Take care and happy travels!  JJ

2013 Livin Lite Camplite 16 DB for Sale

So you want to go camping do ya?

Camping is not for the faint of heart, even in the “posh” conditions of a travel trailer! Having a trusty companion or two and the right tools can make the difference between success and failure.  For me that would be the guard dog, handy husband, jugs of water, and very long extension cord.  Gotter done!

Camplite, husband, kayak, Scorpius, rack, roof, outrigger, canoe, man, towing, camper, travel, trailer, home, Nissan, Frontier, camping

I am grateful for our Camplite (aka Tin Can Ranch) that allows me to go places with my hubby and stay in a mobile “clean room,” away from the hazards of hotels and limited choices of restaurant menus.  Preparing for these trips is an incredible amount of work all by itself:  just about the same amount of tasks need to be completed for a week-long vacation as an over-nighter.  I have a sense that we won’t be doing the latter again anytime soon!  Regardless, I rallied the strength and off we went with great expectations to the Illinois Beach State Park north of Chicago, Illinois.  I was to attend the day-long Designs for Health:  A Prescription for Wellness seminar at the beautiful Chicago Botanical Gardens and Steve was to tackle the surf along Lake Michigan.  Later we planned to meet up with some friends for dinner on the north side of the city before heading south around the city and back to NE Indiana into the wee hours of the morning.  Whilst the latter plans were complicated by severe rain and traffic issues for all parties, it turned out to be an “easier” part of our itinerary!

Our wacky adventures began soon after we pulled into the campground along the shores of Lake Michigan.  Up first:  hooking up the electrical.  Not!  For the next several hours we battled a worn breaker system that kept tripping no matter what we did to avert the issue.  Was it the breakers in the trailer that were overloaded?  The eroded contacts in the refrigerator switch plate that requires a few minutes of babysitting to turn on? Figuring this out required much problem-solving with wifey-poo dressed in early Spring/Winter garb, very weary from travelling and following orders from the friendly but not-so-helpful front office staff.  To sort this out, we ran our extension cord to a few adjacent sites to no avail.  Very likely it was the campsite breakers that were worn and not our camper since everything had worked fine at home the day before.  Too bad the real on-site expert had the day off!

Finally my husband figured out two work-a-rounds:  1)  hooking up our battery charger to the battery to run the water pump and 2) running our 100-foot extension cord to a 3rd campsite and through the kitchen area window to run the electric heater.  In the morning I disconnected the heater and attached it to my blow dryer to make some order of the bed head that came with the morning.  What about just taking a shower you ask? Well don’t!  That didn’t happen . . . for me anyways.  The campground did not have water or sewer hook-ups so we had filled our modest, 30-gallon water tank at home thinking it would be enough for bathroom needs with quick “Navy-style” showers.  We were wrong. Steve did get a shower . . . then a paddle in Lake Michigan . . . then another shower in the only open bathroom facilities in the campground.  I made the most of things and had a quick cooooold sponge bath before heading out to the seminar!  Oh well.  I was definitely AWAKE for the day of lectures to follow!

A few other tidbits further enhanced our experience such as Steve gashing his lip on the rusted breaker box in the midst of trying to figure out things!  So glad for our first aid supplies!  Then there was the brand new hot water pot that I had plugged in through the cord dangling in kitchen window to make some hot tea ended up not working; I used an electric frying pan instead!  Additionally I took every remedy that I had with me to ward off noxious symptoms from ongoing illness and to consume before-and-during the seminar (with copious amounts of food-n-bacon, of course).  And guess what?  The seminar was incredible!  Steve had a great time paddling our outrigger canoe 7 miles along the lake shore and the pup got in a few long walks at the beach.  Cool beans.

woman, seminar, Chicago Botanical Gardens, flowers, planter, Designs for Healing, sitting

Forrest Gump logic applies very well to almost all of our camping experiences these past 3 years:  you never know what you are going to get!  This trip was no different.  We are now home and pooped.  Massive loads of laundry and cleaning are now underway to decontaminate everything for our next adventure having something to do with trailer demolishen derby races or something.  With our luck, let’s just hope we don’t end up on the figure-8 track.  Should be fun.  Or maybe not.  I’ll be sure to letcha know.  Eeeeek!

JJ