When living in the Midwest where pyromania is out of control on Independence Day, the chemically sensitive like me gear-up for the occasion. No, not raffia pumps with ribbon ties and sparkling earrings in red, white, and blue but full-on painter’s masks in pink and yellow! Not even a coronavirus can get to me now! Other days it’s the proverbial N95 mask instead. I depend upon these tools for survival. You are only as good as your tools, right?
When a tooth extracted during the shutdown of the pandemic didn’t heal according to plan, IV ozone treatments cleared things up nicely. It only cost an additional $450! Flash forward to week 9 and FRAGMENTS of bone and tooth start pushing up from the gums that are still sore and sensitive to temperature. It’s normal, right? So I pulled out all 3 of them, cleaned up MORE PUS, rinsed with saline and the remaining antibiotic rinse I had plus some liposomal vitamin C. No prob. Things have quieted down now that I employed the problem-solving skills granted by the Lord, that I have come to depend upon. Thank you!
When convulsive episodes persist eight years later after their onset and every Practitioner consulted has not found their root cause or treatment, I take to my clinical research tools once again. Many symptoms and a new look at prior medical testing now indicate a need to revisit a cardiology work-up. And while recovering from two particularly heinous episodes today, a friend mentioned something on Facebook that will likely direct me to my next specialist. I asked my Family Practice Physician for a referral. Let’s do this. I shall depend upon you again my brilliant Doc, to help me put this together in search of a cure.
And when overly-focused on my own traumas and dramas, the recent passing of the last member of my immediate family not-withstanding, I realize that it is not my own life that is in chaos BUT THE ENTIRE NATION IN WHICH I LIVE. There is a shroud of evil darkening the patriotism and freedoms of our once United States of America. The life I am trying to live has been forever changed and the way in which I have tried to live it is increasingly changing. Political mayhem gave way to a pandemic and escalated into anarchy, the latter coming soon to a street near you. How then are we to live? We could say so much here yet I contend simply that you better depend upon Jesus now or forever hold your breath, your teeth, your head, your mind lest you too go mad.
This may have been our last Independence Day. One day soon may be our eternal days in Dependence upon that which we do not desire. As for me, dependence on the Lord is the only way to live, the only way to survive the evils of living in a fallen world, a world quickly falling into utter darkness. I may go down for good tomorrow due to illness factors or the random firing of an angry mob. Regardless, the outcome will be the same. I’ll be in paradise with my Lord and Savior, Jesus Christ, healthy and forever free.
We still have some choices Gentle Reader. Upon what have you decided to depend? JJ
The pattern has repeated itself so many times that I do not know why, in my humanity, that I am still here. There must be a God.
When suffering exceeds the limits of the human frame, or so it seems, then there must be more holding that person together. There must be a God.
Satan will use every and any negative emotion, event, infirmity, mental game, situation, deficit or even excess, pain, memory, experience, high or low to attempt to separate us from our Creator. When he ultimately fails, we know there must be a God.
Our worth has little to do with what others think, do, or say once we come to know Who knew us from our first moment of life. As this transcendence to seeking others to seeking God becomes real, we will understand that God has a personal form.
What that personal God shows us in His mercy and grace, speaks to our hearts in a way we can know and feel, so that we respond in submission and an eternal embrace. The love and acceptance you will find therein comes from Jesus Christ. He becomes not only THE God but YOUR God.
We are stewards of what happens to us just like the stuff that is given to us to use in our lifetimes. And if your journey like mine has included chronic illness, we still have a stewardship responsibility to use what has been allowed in our lives for some greater good. Yes, even the bad stuff. Use it to point others to the hope you have in Christ. What has He done for you? For what are you grateful? How did you overcome the grave marker of despair? How did you come to understand that the Lord is not Santa Claus and that bad things happen to good people in a fallen, imperfect world? And how did you become o.k. with all of that?
So what then about the meme above? What if others judge you anyways no matter your “testimony,” mock you, and really don’t care about what message you have to convey? You have to live your life anyways in concert with the tri-une God who will never leave you or forsake you. What He thinks is what matters most! His Holy Spirit will guide you along the way, take your prayers to the Father and let Him help you to know that Jesus Christ is real and really God. Oh and especially reassuring is that He will make all things right one day, maybe soon.
I write these thoughts as I sense gradual breakthrough coming in my battle over a horrific illness these past 8 years. Improvements are lasting more than a day. Treatments are starting to work and I can do some things that I enjoy at least one day per week. Sleeping is more restful for at least one, 4-hour segment with at least one of these during the nighttime where it belongs. The convulsive episodes are more consistently less intense, shorter, and sparing of at least one day per week. I am somewhat less reactive to more types of noxious sensory stimuli. Progress is not perfection but I gotta shout out that this time for me there are clear improvements in my life as a whole.
I knew a young bride some years ago as her wedding got closer, who faced the frequent harassment of an overbearing mother-in-law. Her own mother taught her a simple technique of taking the verbal assault as if they were splashes of water. The young lady learned to let those splashes of water run off of her like water on a ducks back, exclaiming in her thoughts, “QUACK! QUACK!” The little internal laugh of such a silly technique has actually helped me shed the critical remarks of others many, many times. With the COVID-19 pandemic, I have had several folks claim my conservative views were due to my health problems. No one cares about my Master’s degree nor extensive work experience in the health care field. I get shot down as one of those with a “compromised immune system,” probably o.k. to let go, to get sick, to die. Seriously! Or I am not someone whose opinion counts about anything important because I am not important. And that is a LIE. QUACK! QUACK!
Just don’t give up Gentle Reader, k? No matter what gets thrown at you or thrown against the walls around you, keep going. Lean on the Lord as the person of Jesus Christ to provide supernatural strength and wisdom. Dig into His Word if only for one verse at a time. Cling to it like a lifeline! These are crazy times indeed. Regardless the God of the universe has overcome it all!
Belief in the Lord Jesus Christ may just change more than your own life. JJ
1 John 5:4
For whatever is born of God overcomes the world; and this is the victory that has overcome the world—our faith.
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 . . . .
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
This is getting old already . . . not to mention the seizure attacks around 11:00 pm last night. Or is it still tonight? I digress.
A different role, a place all too familiar
As the rest of our lives carry on with big news: hubby passed his FAA oral and flight exams! Just like that I am the wife of a pilot, again!
Alas the doldrums of daily routines still carry on
Finally getting to work in my own garden late tonight after devoting much of this past season to a community park and much of this weekend recovering from another setback, ugh. The blackberries are no more. Elderberries are up next!
It was 8 years ago that I got sick just 5 days after buying my first truck
Now it’s a few weeks after an upgrade in same . . . does this mean that I will get well and drive off with my beloved into the sunset? Oh how I can dream, right? That we did the right thing too.
One more time things come around again but really are not the same
For we can never go back only forward as each breath moves us on. I guess we want to be who we are now with the romanticized memories of what we once knew: the fullness of our present with the innocence and perhaps mistakes erased from our past? Yeah, just let it go.
Look to our Lord and His return to make things alright my Gentle Friend
He will return in glory, in judgement, in power, and the makings of everything better forever good. The best part: TIME will no longer be our measure but only to dwell . . . lain in the rapture of ultimate love for always.
Sounds wonderful to me. Do you know Him too? Oh I pray that you do and you will be there with me when the stuff of life moves on for good. May this music minister to your soul as we wander towards our heavenly home. JJ