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
12 But I want you to know, brethren, that the things which happened to me have actually turned out for the furtherance of the gospel.” Phil 1:12
Just as this picture and this scripture present two extremes of perspective for the activities of life, they are united in one theme: we shall rejoice with Christ as our guide! Yeah, I know that is a stretch . . . but we do know that the God of the universe has a sense of humor too, right? I mean he created aardvarks, zebras, and tse tse flies! What’s up with that? Oh I know that the Original Adam named them all but just how did he do that? They were all such weird creatures! So it follows then that humor can help us endure many kinds of extremes, even the ones you and I are facing today.
Take for another example the thieves that attempted to steal gasoline from an RV. This is a true story: instead of tapping off the gas line they ended up tapping off the septic line instead! When the fluid started flowing it was not fuel it was the polar opposite: stool! So sad. Such a righteous punishment I must admit! And as a grateful owner of a travel trailer all I can say is: Tee hee with a smirk. ;}
I cannot say that I can relate to the paradoxical themes of life with much right now with much lightness of spirit right now, however. I’ll just keep it simple: there’s some good and there’s some that is not.
On a good note I am grateful to report a widening of social contacts of late. I’ve reached out to some old friends and some newer gals have jumped back into my world from my local church. I appreciate the friends that I’ve met online (and you know who you angels of mercy are) and hope we can extend our fellowship. All of this is good. It’s amazing how all believers in Jesus Christ share a common unity even when the circumstances of our lives can be so different. We all have our daily wants and needs; our Lord cares for the desires of our hearts tenderly and for these we can pray in earnest for one another.
On a less good note, new I.V. antibiotic treatments for chronic Lyme disease are going quite roughly. Yup, revisiting Lyme since the persistent seizure attacks sure look like the episodes of others dealing with the neurological complications that can happen long after the acute infection has come and gone. It was 4 years ago that I first started treatment for Lyme when things got sidetracked for treatment of mold and mercury toxicity, dental issues, Candida, parasites, and a possible oxalate burden exacerbating fibromyalgia pain. Use of a Rife machine brought daily seizure attack episodes and treatment of Candida escalated them from 2 to 5 hours of convulsive episodes per day! I was bedridden the better part of about 4 days each week this past Spring, Summer, and Fall. So beginning in January I was started on high doses of IV Rocephin (antibiotic) and I remain sickly but out of bed more of the time. This treatment coupled with the wintry temperatures below freezing have brought incredible pain. However, the days that I am up until daybreak every night of the week has cut down; tinnitus, brain fog, and other executive functioning skills are sloooooowly shifting for the good. Sometimes even the pattern of convulsive episodes shift as well (thank you liposomal melatonin!). Just maybe these past 4 years have not been wasted after all! It appears that each new treatment has prepared me for such a time as this: we just might be able to treat this remaining beastly diagnosis and its co-infections to get well . . .
There is so much to consider. Will I continue on antibiotics long term? Will my health insurances help us out or cut us off next week? Will I be able to get a port to spare my aching skin and forearms from repeated pokes and dressings that trigger more wretched episodes? When would I transition back to more herbal-with-pharm-grade supplemental interventions? Will the reactivity to mold and fragrances ever come down or do I have to go live in a pristine environment somewhere for a few months later on to fully detox? How much more stress can my beloved husband, Steve, be expected to bear? And how will we pay for all of this?
As the frigid Winter temperatures of the Midwest bring more of a sense of retreat than charging forth into the unknown, we are choosing to press on anyways with my treatment for chronic Lyme disease. I just wear long underwear everyday to keep warm! We are starting where we are with a local, Lyme-Literate Medical Doctor who has treated dozens and dozens of cases successfully. I know that to be true. I have met many of them when we had a local Lyme disease support group. I noticed that each of us facing this dreadful disease had chosen a somewhat unique path to his or her recovery based upon the damage the infection caused to our bodies and our individual resources. (See this link for more info on chronic Lyme.) Perhaps my case was one of the more severe. Perhaps the Lord had more than “recovery” in mind when He allowed this serious illness into my life. There is so much to consider that simply was not on my radar over 4 years ago.
If you have found this blog by way of your own journey through chronic Lyme disease or some other serious illness, know that I am praying for you. There is hope! You are not alone, Gentle Reader. Please comment below and allow me, if you like, to connect you with a larger community of those finding meaning beyond his or her diagnosis. Our Lord, Jesus Christ, grieves for your suffering, your fear, your broken heartedness. He sees you and will see you through what you are facing as He has done so for me and Steve. He loves you more than anyone (including the furry pup above who has found his prize squirrel in the sunshine of a better day).
May we both smile some day in the arms of our Heavenly Father for having connected this day, for His glory. And, um, when we get our prized prey I’ll just say, “please pass the catsup.” Squirrel on the Bar-B-Que anyone? Ewwwwww! :JJ
Another day slipped into history as I pondered the gratitude I felt for a recent task accomplished. It’s no matter that the wrapping of Christmas presents got done from about 2 to 6 in the morning on Saturday. That’s just how I roll these days . . .
Social media is one of the ways that I employ to counter the tremendous isolation I experience while overcoming a serious illness. I used to be shy about it. Many folks write about their need for a sabbatical occasionally when Facebook and the like become too big of a time eraser. My life is structured differently I guess . . .
My brother, Michael, often talked about the support he felt from fellow poker players online. Really? How can you experience anything valuable from an anonymous side chat in a gambling venue of penny poker through the internet? Flash forward ten years. Now I get it. Mike was home all of the time caring for our mother who was struggling with lung cancer, chemotherapy, and alcoholism. The things that he endured were very difficult. He would say that he never knew what he would find when he returned home from running out to the store or anywhere at all, making it difficult to get things done. Those little touch points with his fellow poker players gave him the assurance he needed to do what he had to do the rest of the day . . .
Should life return to “normal” one day for me then my time spent here with you will naturally diminish. I’ll be sleeping in the wee hours of the morning instead of wide awake in the recovery phase of a hellish nightmare earlier that evening. I have already grieved about it, the loss I mean. So much time has passed with so little getting done in my own life. Perhaps the tasks that have been completed are not measured on a calendar or my “To Do List?” For those in Christ Jesus, we know that to be true.
Another example is how I finished reviewing a copy of a canoe and kayak paddling magazine last night for which my husband is the Editor. I guess I can now add “Assistant Editor” to my resume for my contributions to the first four issues. Cool beans. I could list a bunch of crafty Christmas things that I would rather be doing yet that was not my calling for those hours. Many will be blessed by this sacrifice including me.
Ever feel this way when sidetracked from your dreams, Gentle Reader? In ways big and small we may struggle to discipline ourselves to do the tasks we must do when our hearts are in another room or time zone. Know what I mean?
The bottom line for me on this subject tonight is that the sooner I rest in the promises of my Lord and Savior, Jesus Christ, the sooner I will realize that I am perfectly where I need to be. He will provide everything I need from the breath that is not coming easily to the assembly of a Christmas gift still in boxes strewn here and there. I know from another tumultuous time in my life that the Lord does answer our prayers in due time. The waiting, the setbacks, the anticipation make the rewards sweeter. How can I expect to make it to the finish line with style and grace if I give up on the last leg of the race? I will not!
So don’t you give up on me either, k? And please hang tough if you are going through challenging times as well. If you need to cry out for help then please do so NOW. Our God promises in His Word that:
3 The Lord will strengthen him on his bed of illness; You will sustain him on his sickbed.
Psalm 41:3 New King James Version (NKJV)
He will see us through to our last breath if we but call upon His name. My Heavenly Father has done so for me a thousand times. He will do so for you too. Tonight I am praying for us both. JJ
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