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

Don't Wait!*

If ever your skin starts to itch in a mysterious way

Don’t wait to get it evaluated when you have a history of chicken pox or shingles.

The clues I missed were that it was one-sided and itched without pain

Yet it was the re-activated virus of herpes zoster in a new spot but related just the same.

My Doc practically shamed me for waiting so long to get treatment

But hey, another Doc said she couldn’t even see it the week beforehand

But there it lain underneath the skin where I could feel the bumps

Itching day and night, burning some too . . . I guess the stuff of life got in the way.

Anti-virals need to be administered within the first 72 hours

A fact I had forgotten since the last bout earlier this year and in 2016:

Three years ago it was hell on earth, screaming for 6 hours straight

Followed by a 3-day hospitalization, 2 emergency room visits, and a few minor complications too.

Shingles Rescue by Peaceful Mountain and liposomal glutathione help with the lesions

Taking all of the prescribed medication is simply what you must do

Don’t wait by trying this herbal stuff or that supplement unless you like to suffer

I already have had enough of that. Give me drugs already. Shingles is simply no fun.

The stress of life can worsen with the holidays and it did so in a big way for me

I’m only human I guess and so are we all. By the grace of God, we’ll get past it once again.

So press on, Gentle Reader, and find the goodness amidst the itching, pain, or whatever it may be

Joy and happiness will return one day: there is much to be thankful for even in this mess of late!

(*Just a little public service announcement of sorts.)

I need a makeover for sure!

Survival is not the only goal

After 4+8 hours of sleep, initial breakthrough seizures, and simply being back in our mold-safe home, I am weak but stable again. The nightmares are gone; body pain and blood sugar are coming down. So glad that this trip and Thanksgiving week are behind us.

I could question if I should have gone at all to Arkansas; last year I was too sick to go and turns out that this year was not enough different to try. Eight hours of seizures on Wednesday alone was devastating! I simply cannot be around known water-damaged buildings despite precautions; I did not go inside. I am too early in basic mold treatment (that I can finally tolerate) to test it out. I don’t know if I will ever fully heal enough to go into known water-damaged buildings to visit loved ones. I should have stayed home.

While this trip was a disaster at many levels, I came away from it clear that insults and false accusations are unacceptable from anyone at any time. This serious illness is real and it’s called Chronic Inflammatory Response Syndrome. Confronting evil is required (and I did so) yet it can still be disastrous when you are sick. Simply stay away, basking in the protection and saving grace of our Lord, Jesus Christ. Let Him fight the battles ’cause we humans will fall short.

In due time the trauma and drama of battling serious illness will heal. And the Life that once shined from within me will return. It is not here in these pictures of me and my beloved by the campground Hot Springs Arkansas.

Too many directions are no matter to Him

When the movement forward becomes murky from the treatment that sent me sideways

When the latest result became a scare not for cancer but still not not quell my burning question

When the past perks up and says hello, by the way, can you spend some time over here with me?

When the fog settles all around you, nightmares rob your rest, and things look worse but they really are not

You run to Jesus my friend.

Where did the money go when a gift seemed like it would settle all accounts again and again?

Where do you turn for comfort when isolation has become your friend and this is your normal normal?

Where do the roads lead that seem to have no arrival of merit in space, of substance, in meaning?

Where does the time go when it is no longer measured by the hour but the task of survival sun up to sundown?

It all goes to Jesus my friend.

Why do prayers seem to go no where when surrendered by obedience yet are tethered with strands of the unseen?

Why must suffering continue ad nauseum, day without end, manifesting in new ways over and over again?

Why didn’t I have a happy childhood such that my years reinforced it rather than set the little one inside free?

Why does the Lord delay in making it right for those who groan worse than I ever will?

Because He is Lord my friend.

What a day it will be when we know the answers we seek, when the glory is replete for all to see

What a treasure we will behold when the whys matter less where we put them and there’s perfect peace

What am I doing pining for that day to come if I can choose to dwell in His goodness now?

What witness will I leave until my own days have their end, my talents can no longer shine?

For He’s beyond what you see my friend.

Who gets this?

Don’t be this gal!

There have been many times when skills above being a “patient” have helped me navigate the mess that is our American healthcare system. While I am better understanding what it means to be pre-diabetic for example, I am convinced that it takes at least some college education to get the basics done! The following skills are critical.

Organization

Get lots of manila folders in January every new year and label them by categories that make sense to you. For me that means Medications/Supplements, Clinical Summaries, Insurances, Test Results, and one for any new, major diagnosis. Then I have a master notebook with the latest test results that I developed in preparation for a comprehensive evaluation at the Mayo Clinic. While most major healthcare organizations have online patient portals with all of our test results, sometimes your provider (Doctor or other skilled professional) will not be able to access them. Streamline each medical consult by having copies of pertinent reports with you at each appointment. This is particularly true when crossing over from one healthcare organization to another to see a particular specialist. GET YOUR OWN COPY of scans on DVD and go to medical records for the paper reports after each major test, test procedure, or medical procedure. Consider scanning them into Word files for when you are communicating with providers online. Searching for test results on your smart phone via the respective organization’s patient portal could be helpful but you will waste precious time with said provider. Your appointment may be over by the time you log in and access the data!

I first learned about organization when organizing ceramic molds for an occupational therapy department in a mental health hospital as a high school graduate. The patient groups ran more effectively thereafter and my supervisors were thrilled. As time went on it became clear that my love for office supply stores, blank CDs/DVDs, then little thumb drives were good things.

Put Stuff Away

For us, each year of non-medical records gets put into the same box as the same year of tax records. We keep only the past two years of tax record boxes in our home office and the rest go into the attic. After seven years the boxes can get shredded, burned, or otherwise destroyed (if we ever get around to it!). Pertinent folders relating to test results and medical conditions get filed in 4-drawer file cabinets that are alphabetized. Yes, this includes if our files spill-over into more than one file cabinet (as we have 5 of them!). A to C now takes up just one of these cabinets and may change when folders that are no longer needed will get purged. Yes, we don’t buy more file cabinets anymore; I just purge outdated information at least annually and especially when there is no more room for new records. Think it is outdated to worry about paper records? I disagree. There will always be important mail, receipts, reports, legal documents, and other pieces of paper to manage.

Any documents stored on our desktop (or laptop if we had one) should get dumped into an extra, external hard drive (our preference). These can be programmed to backup automatically weekly or to a cloud service in real time.

The importance of filing paperwork for quick access became a critical asset just 2 months ago that could serve to extend my life. I was filing some CT scan reports one weekend when I noticed that NO ONE had followed up on the finding of a new pancreatic cyst. This type of finding requires swift and specialized follow-up which began two days later. I am now in a 6-month surveillance program to make sure the particular type of cyst does not advance into cancer (that is highly fatal). Keeping-and-following good records is as important as the healthcare you seek and doing so could save your life!

Take Notes

We all probably have our favorite place to record information, whether it is on a smart phone app, calendar, daily planner, etc. The key is to be consistent: use the same method all of the time. My Mom was the queen of taking notes on partial slips of paper scattered on the back half of the kitchen counter! Her address “book” was a drawer beyond the sink filled with torn corners of paper, some tucked into the address book with a rubber band around it and some just stacked above or below it. She took out the piles each December to write her Christmas cards and vowed to update the address book before the holiday returned the next year. She never got it done. It was through these handwritten notes we combed when she passed away to make sure that important people in her life were contacted. And it was only then that I came to appreciate seeing her penmanship on pages yellowed, torn, stained, and re-used, that her system really did work for her over her entire life.

Date everything. Write down who you talked to and the phone number you called. Record the prices quoted, deadlines, and most importantly: what to do next. This way the next time you see your note-taking system on a particular topic, you can pick up and continue where the activity last ended. My Mom was an office manager and would probably find me to be a bit compulsive to include all of these data points in my note-taking and filing systems. But I submit to your that our healthcare and the complexity of life require it these days.

I learned the importance of good note-taking when trying to get some specialized cranio-mandibular care covered by any one of 3 insurance companies. I spent dozens and dozens of hours with what became a 2-inch thick folder of notes, letters, and statements accumulated over a year and a half to account for over $5,000 in out-of-pocket charges. I just knew that if some of the charges were coded correctly and sent to the correct payer, we could get such specialized care covered. I was wrong. We have received around $300 in reimbursement! I didn’t know that nearly all of my efforts would be wasted when the original provider offered to help but would not bill insurance directly . . . then did bill two of them . . . using either incorrect or out-of-date codes . . . over and over again. It was a nightmare for all of us involved.

As I write this, there’s a pile of 5 1/2 pages of billing statements, flyers, and notes stapled together and sitting next to me covered with handwritten notes regarding some new medical equipment. So the saga continues yet already I have had $20.28 in charges reversed. Along the way I asked to talk to a supervisor. Yes, I’ve learned who gets what done, aided by my 30+ years working in healthcare myself followed by 8 years of battling a serious illness and its subsequent paperwork. Organize, put stuff away (but not without looking at them first and periodically thereafter) and take notes. Then blog about it or comment below. I’d love to hear from you Gentle Reader. :JJ