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

One more time

A new specialist, a new gathering of papers

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

Freedom from Rain

Rainy weather working its foggy magic on a landscape is beautiful. A rainy day encourages introspection. Or at the very least a nap. I love the rain in all of its spirited and benign forms. But we have had rain day after day without much respite. This is rain of a different sort. Too much rain foments rot both above and below ground. Too much rain spoils blooms. Too much rain dampens the spirit. We have had all of the aforementioned. 

Deborah Silver

Is it the rain or the cold that gets to my weary bones far beyond the havoc it reigns in the garden landscape?

Perhaps the dry-out late in July that parches the land through the Fall is even worse, when my soul aches for a simple cup of relief?

How will I look back on this season of my own life where moments of respite, nourished from the right care gives way to occasional relapse and now tragedy?

Alas my dear brother, survived with me but not with our youngest, Rob, lies in a coma amidst the sterile hum of machines you could never repair

In your appliance servicing days let alone fix your own broken spirit from never quite fitting into the affections of our Dad but perhaps too much by our Mom?

What is Mike’s world like right now: can he hear the buzz, taste the plastic tube down his throat, smell the air now sanitized and finally free of cigarette smoke?

I ache for you as I did for Rob. You two never did get the advantages I had as the oldest nor fight long enough for better despite our childhood traumas.

Or perhaps that first year of my life cinched it when there was more love to give in both bloodlines . . . oh how I wish I could go back and carve more out for you!

The Lord grieves for us three as now you are now in the juxtaposition from time to eternity. It’s just not how He meant it to be you know.

I will love you forever Mike. Godspeed if this is the end. Go to your Maker and live at last, totally freeeeeeeeeeeeeeeeeeeeee!!!

A rain garden rises from the soil and rocks, bringing beauty and purification. Consider this a sign in the natural world of His creation that imitates the glory of a life surrendered to Christ.

A new answer to another question I did not ask

Life never ceases to be an adventure if that is the perspective you choose.

Perhaps an underlying theme of the Hope Beyond blog when it began would have been, “the plot thickens.” Or “deadens.” Flash forward about 7 years since my first blog in August of 2012. At my current stage of recovery from serious illness and a turn for the better-but-not-done-yet, I’m going to attempt the theme of “a new adventure awaits.” How is that for positive thinking?

A little trellis project almost 11 years in the making gets completed this weekend! Yay God!

I haven’t written in awhile. Since March of 2019, there are more moments of functioning better each week and I am taking advantage of them. There are also more very long naps of which I am forced to take advantage as well! The the new direction in my healthcare of getting off of thyroid medication created some problems then had an unexpected turn when parathyroid issues were discovered. My labs in both and related camps are all over the place, making for a Peter Faulk’s, Columbo-style of in-depth investigation raise more than one eyebrow of intrigue. Could there be another causative factor to consider in the convulsive episodes, requiring its own investigation? Yes, it appears so. Sure could be possible that the thyroid nodules, albeit shrinking, hid parathyroid tumors that are additional culprits in serious illness. Both hyper/hypothyroidism AND hyperparathyroidism can explain my clinical presentation. It appears that I am dealing with both. Who knew?

Well the Lord knew all along, the factors and their purpose for a nearly 8-year derailment in life as I once knew it. I am beginning to see that everything I have learned to date has NOT been wasted. I would not be able to respond as quickly to new information if there were still dozens and dozens of other medical conditions to rule out or address. I would not have a deep compassion for those suffering chronic illness today. My faith would be weaker and very likely my marriage. I could go on.

Very few folks have had as many medical tests that I have had, even in the community of persons dealing with chronic illness. Some folks stop after medical professionals label you with depression or anxiety. And if a person persists with extensive testing, very likely it’s peppered with questionable, even dangerous energy techniques akin to quackery. Thank the Lord that I didn’t spend very much time with energy medicine. He let me see the demonic influences and/or lack of science then helped me get away quickly thereafter (e.g. Rife treatment using sound and light frequencies hurt me badly.) Other times my Jesus simply closed the door to a promising yet deceitful avenue even before I was tempted to get near it (e.g. tai chi and yoga). This was very difficult at times when I felt desperate in my personal hell or conversely, when the testing and treatments were recommended by my brothers and sisters in Christ. I simply had to decline with blind faith even if that decision appeared to prolong my suffering in their eyes. Very tough road indeed.

Today I welcome the new answers with more of a sense of adventure than fear. Will I need neck surgery if a parathyroid adenoma is discovered? We are not sure yet. My labs don’t fit the typical profile and I have been in that camp dozens of times before. But when 1) both cardiovascular AND osteoporosis can be related to both thyroid and parathyroid anomalies and 2) calcium trafficking/dis-regulation problems can contribute to neurological symptoms, then it seems logical that both would need to be addressed. Incredible. Separate body processes in which anomalies can be the root cause of disease in the 2 different organ systems. And to think that this new adventure would have never happened if I had not gone to Mayo Clinic in February looking for answers about autoimmune disease. But there is no AD. Maybe not even a Functional Movement Disorder. Just another new answer to a question I did not ask. Holy cow! JJ

Psalm 34:8 New International Version (NIV)
Taste and see that the Lord is good;
    blessed is the one who takes refuge in him.

When the mind doth calm

Almost unbelievably, the change of more than Spring has begun

I never thought it could though wish for it I did with all my might.

Because you can only see from where you have been unless given to dream

But alas I don’t do well with fantasy: give me something real I can touch, I can feel!

Years with my mind in the craggy place of sickness but yet wired just the same

Astounded I functioned at all as I look back at my years from there to here.

So the consult among the experts, the one we had to persist to even get

Held the critical link to a change in medication becoming the magic pill, so to speak.

More days, more nights free of seizures than ever before have opened up my world

To the wonders of being, the tasks of life, the longing embraces of my beloved so sweet.

With more road to travel in this journey of recovery, I still do not fear it ending soon.

When the mind doth calm the seeds of true hope and love are born I can see:

My Lord hath brought His goodness and in it I will simply dwell for now, alright.

Psalm, Psalm 107:29, waves, Bible, storm, Jesus, calms the sea, hope, trials