Where do you go?

Where do you go when what was good is now bad and what was bad is now commonplace,

When the meaning of words is twisted or the prose is outlawed altogether?

Where do you go when your spirit is disquieted, there is no where that feels safe,

When you cannot trust your body to get you there even if you knew where that was?

Where do you go when fear-mongering is the top headline every day

When there is no place for discussion much less public or private debate?

Where do you go to share your pictures and news and questions and art

When social media has become the Big Brother of an ever bigger government?

Where do you go when your losses outnumber your wins and

You just don’t know when or if either one can come back in any form?

Where do you go where the customary habits of hygiene and socialization

Are so altered by an unforeseen enemy they can’t even objectively identify?

Where do you go for human touch, to connect with loved ones

When there is no room for them even when dying in a hospital bed?

Where do you go for wisdom, for light in the darkness, for hope of a better day

When all you can see is madness, anxiety, fear, doubt, and dumbing down?

Gentle Reader, you go to Jesus Christ

His throne of grace is mightier than

Any trial or tragedy or evil we may face.

Go now. Our very eternity is at stake.

Coming out of shock

Quite disturbing is the realization that the consequence of serious illness

Adds damage from its own dynamics, worsening symptoms to a hellish level.

Hours of convulsive episodes reveal failed treatments intended to cure

Instead I have whiplash and the trial of convincing my Doc to test me some more.

Fortunately for me, he was willing to throw the book at me, inside and out

Not so good for my hubby who held me as I hung from his arms for my chiropractic care.

Gotta hand it to my Doc for making it all work when I could not stand

Both of them enduring the gutteral eruptions of screams when my brain is afire, nonetheless.

We all got through it, me with zero sleep from the night before

Grateful for the comfort from a local burger joint to restore our famished bodies, minds.

Oh to have respite from this waking nightmare whose root-cause is still mysterious

It’s the kind of Groundhog Day that repeats until you finally get it or maybe not.

Someday maybe . . . Lord willing. JJ

Another Direction

After enduring hell on earth with dental professional #5 in my search for answers, I have decided to go another direction. Nine hours from now, my beloved hubby and I will be in the office of a new oral surgeon who will examine me and remove my infected tooth in the same visit. The procedure will include IV sedation in his office and not in a hospital setting. By this afternoon, we will be home and I will begin another process of recovery. The shutdown of “elective procedures” due to the corona virus which has delayed this procedure 5 weeks since my diagnosis will thus be overcome.

Lord willing, the convulsive episodes triggered by virtually every meal, even the pureed ones over the last week, will diminish. Will the episodes stop completely? Only my Lord knows the answer to that question.

We have been here before in: 1) 2015 with the extraction of 2 infected teeth (one of which had a root canal with a hidden amalgam) and 2) 2018 with the fabrication of specialized dental appliances by a Craniomandibular specialist. Both interventions brought significant gains however they did not fully eliminate the problems related to the trigeminal nerve complex on the left side of my face. Looks like there is another tooth involved. Looks like that problem is about to be extracted, i.e. it’s OUTTA HERE!

I am weary, Gentle Reader. I am concerned about pain management. I am concerned that while this procedure will solve an immediate problem, it will not stop the convulsive episodes that continue every day. Actually lately it has been multiple times per day: every night falling asleep is when they occur most consistently. My neck and upper traps are quite painful from the wrenching and rapid repetitive movements of the seizure attacks. Everything hurts in my broken frame. I have a headache every day. The mandated quarantine orders and fear of viral infection has kept us at home for most of the past 5 weeks. No Doctor, Chiropractor or Physical Therapy or Detox or IV Ozone treatments. What a crazy time in history to be chronically ill.

With nothing left to give, I submit the appointment later today to the will and covering of my Lord, Jesus Christ. Please carry me and my beloved this day . . . .

When you are afraid of everything

Every once in awhile I emerge from the fog of battling serious, ongoing illness and realize that the way I view the world is not the same as that of others around me. I am often afraid of everything!

Folks are dressing up for special Christmas celebrations and with it comes perfumes, colognes, hair spray, and lots of pretty/smelly stuff. I just practice what I call a “virtual hug” during greetings and keep my distance from any close contact where something might rub off on me. It’s awkward but works better than being triggered.

Venture out to a social gathering and I’ll wonder what particulate matter rests in both the upholstered seat upon which I am sitting or the coat that the person next to me is wearing. The mycotoxins from mold persist forever and easily transfer from one cloth surface to another. How many of us have our winter coats dry cleaned each year or launder them? Our vehicles and outerwear can carry with them the toxins from anywhere we have visited in the past. Some items simply cannot be cleaned of these toxins. And even if they can be cleaned, who else but another “mold avoider” uses anti-fungal agents like we do when washing clothing? Or tosses coats in the dryer under the sanitize cycle before putting them back into the closet or wearing them again? Probably nobody I know!

We brought a nasty scent home with us inside our new-to-us truck, from a recent trip. The sour smell is from a water-damaged building where any contact has the potential to trigger a violent convulsive episode. Maybe this low level of exposure that remains will somehow de-sensitize me to this type of mold? Yeah, right. The portable ozone machine that we really can’t afford right now, came in the mail from Amazon today. I’m going to try to zap that stinky smell out of there soon and hope that the remaining fragrance in there from the dealership goes with it. Cleaning, vacuuming, essential oils, charcoal packs, or baking soda haven’t worked on the latter. Driving with the window slightly open hasn’t been enough to ward off fatigue and the risk of pre-tic symptoms when I am in there. I need to drive to medical appointments. We will fix this soon, Lord willing.

Sharp, loud noises have become an instant trigger again and quite a nuisance. Twice in the past 10 days, my husband initiated an innocent action that resulted in a high-pitched, short, loud “olfactory stimulus.” Immediately I felt my ear drum move inward and a convulsive episode ramped up quickly thereafter. These are really bad. One happened last weekend as I was riding home with my beloved from a sweet date viewing Christmas lights, listening to music on the radio coordinated with each display. I could barely open my eyes for the last display as the head-banging had not yet subsided; my biggest fear was that the hand I struggled to push near my head wouldn’t adequately stabilize the wrenching of my head/neck. Steve fed me a rescue remedy when we got home while I still sat in the frigid air on the passenger seat of our truck. My left leg dragged as he was eventually able to guide me into the house (with me struggling yet determined to try and walk under my own power and not be carried). We removed my outer layers of clothing in case the scent of the truck was on them; I crashed into bed and slept for over four hours. I woke up in the middle of the night very hungry, ate a very late dinner of sorts, and was not able to sleep again until after sunrise. The new day was trashed. We had already cancelled attending the Holiday Pops concert downtown to avoid loud music. But I love Christmas decorations and music! This really sucks man.

Everywhere from public restrooms to the open door of a neighbor’s home exudes air fresheners these days. A package of new neighbor was accidentally delivered to our home so I thought, neat, I’ll take it over and get to meet them. A waif of something fragrant washed over me as soon as the sweet gal opened the door; “c’mon in!” she offered in a friendly tone. A quick, I can’t due to sensitivities nearly killed that friendly encounter. Fortunately the late fall day was a little milder and she didn’t mind chatting on her front entryway outside of her home. Sigh.

I would LOVE to invite all of our new neighbors over to get acquainted later this Winter. We did this very thing with our neighbors before I got sick and it was a sweet time of fellowship. FOUR of the eight homeowners have turned over in our neighborhood court in which we live. Someone needs to organize a get-together and I wish it could be me and my hubby! I simply cannot do that. I’ll have to wait until the warmer weather comes and we can sit outside on our patio. I guess that’s alright too . . . five months from now when the weather thaws and warms.

We still practice a relatively high level of extreme avoidance that is getting OLD after all these years. Perhaps progress on treating a particular type of sinus infection will reduce my sensitivities. Let’s repair that blood-brain barrier already! I am grateful that I can finally treat the chronic MARCoNS infection that is characteristic of biotoxin illness. This makes me hopeful that maybe more than the olfactory cranial nerves will heal as well. Over time, of course. More time. The trigeminal nerve that gives rise to TMJ pain and had triggered episodes has already healed quite a bit with my specialized dental appliances from a craniomandibular specialist.

These are only a few of the examples of how chemical sensitivity, mold sensitivity, Chronic Inflammatory Response Syndrome (CIRS) play out in a person’s life. Gene expression gets turned on for persons with particular HLA types for mold illness, contributing to abnormal responses to everyday sensory stimuli. Turning it off or lowering it requires removal and avoidance of triggers, various types of testing (home/work/school environment then specific lab testing), dietary changes, and a hierarchy of expensive treatment protocols. I am grateful that not only am I able to tolerate a complex combination of nasal treatments, there are fewer food triggers of symptoms now than in the past. Some of the labs used to diagnose CIRS have normalized or are only slightly elevated. My local Functional Medicine Doctor versed in these protocols will re-test me for MARCoNs early next year. I am hopeful that I can finally clear this infection; the sinus headaches have already subsided. (This Doc is so very nice to me as well! Love that!) The laundry list of other medical conditions that has come alongside this nightmare are not nearly as disabling as CIRS. I never lose hope that many can get better or even be cured this side of heaven, Lord willing.

When you are afraid of everything, it is really really hard to want to try new things, meet new people, or go to new places. My confidence in virtually every aspect of living has suffered. Expertise, proficiency, and tolerance for the work environment of my profession of occupational therapy have eroded and I am not sure that I will ever be able to get it back (or even tolerate working with all of the potential exposures of a clinical setting). Indeed I have developed new skills during this period of time and you are reading one of them right now. I am grateful to have designed several websites and am the editor/assistant editor of 2 publications. Medical research has become a necessary pursuit. These are worth something I suppose and can be done in the middle of the night when needed. Gardening has sustained me throughout these 8 years of battling a serious illness and 6 of them with biotoxin illness in particular. Sometimes I am taking care of our yard or a public rain garden after dark when I feel better but hey, that’s what flashlights are for, right?

Perhaps I need to re-read John Maxwell’s book entitled, Failing Forward. While this time in my life is not my failure per se, the effect of repeated trials and traumas is very similar. Better pull it out again. In life, the opposite of fear is courage and perseverance is a requirement to succeed thereafter. Somehow I do although this has been one of my greatest challenges when feeling like a beaten puppy. Further, some would say that the opposite of fear is love as in the perfect love that comes only from our Lord and Savior, Jesus Christ. For if we truly know His love then nothing in this world can separate us from it, including the powerful tool of fear, fear of failure, fear that things will not change, fear that we are alone to suffer, and so on. The truth is that those in Christ will never again be alone, the same again, or away from the Divine plan and purpose He has for our lives. Knowing this truth brings not only courage to go on but hope. And my Jesus’ love and care has helped me move forward to even get to this day, to think that one day even if it’s in heaven, all will be made new, right, and good. That’s the kind of love in action that obliterates fear.

Sigh. I’m tired tonight. The shingles is healing. Some medical questions are now answered resulting in closing some doors and leaving others precariously open. I’ll need to meditate on these topics some more. Still, I think I have a better perspective, more hope than when I started writing to you, Gentle Reader. Do you deal with fear too? 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.