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.
While it may be time for celebrating a Christmas holiday, preparing for the new year about to begin, or maybe completing something else on the “to do” list, one thing is for sure: it’s not my time to go yet. But what does it all mean?
Sunday was a particularly difficult day. Taking a particular anti-viral medication in the wake of a return of shingles left me with few options other than continuing it for awhile longer than in the past. I had just sent a message to my Doctor via the patient portal at our local health system asking if he would he extend the prescription? He agreed. But what was I thinking anyways?
Considering it a good idea to add a a supplement that fights viral infections, two days prior I had added a low dose of one about 2 hours after the dose of the prescription medication. That was a BIG MISTAKE. Within the hour I would begin what would become a day and one-half in bed with on-and-off convulsive episodes. Holy cow! Here we go again! Was it die-off? Overdose? Redistribution of toxins from another source other than that which I had intended to target? Who knows?! The result was disastrous. Too bad that the weather was very mild and sunny for a December day; my hopes to get outside and take the pup for a walk were trashed. Hubby went for his 20-mile cycling ride. I had to stay in bed, taking 2-3 hour naps after any activity such as making a meal. Another weekend was LOST to factors of illness.
Perhaps it is exhausting to be battling FOUR infections at the same time? Indeed it is. Yet that is exactly where I find myself: 3 strains of herpes infection (zoster plus the reactivation of EBV and HHV-6) in addition to a MARCoNS sinus infection. Treatment for the latter has included a complexity of rotating nasal sprays and rinses. I was nine days into the treatment of shingles with famcyclovir TID. Yes, shingles had flared up for the third time in as many years, this time with severely itching and burning lesions on my upper back. Increased fatigue was profound. As the days wore on, the convulsive episodes appeared to be coming down again as well as reactivity to sensory stimuli. It seemed like progress. However, this trending did not last beyond that extra dose of an antiviral supplement called Lauricidin.
Evening came and my saint-of-a-husband had already helped me with a couple of rescue remedies in the afternoon. He lain beside me as another episode ramped up, this one more aggressive with guttural utterances that were as frightful as they were embarrassing. Seizure spikes and vocalizations emerge much like vomiting does during the flu. It just comes out of you and there is nothing that you can do about it. One arm shakes repetitively so fast that you think you will either sprain something or fling a hand right off the rest of the extremity into the air . . . then a leg on the opposite side repeats the pattern about 9 inches up off of the bed! Try to cover up to stay warm and just the initiation of movement exacerbates the intensity of the convulsions, sending my body further out of my control. I gasp for air then pant vociferously lest I pass out for a lack of oxygen. Then the pattern cycles again with new, involuntary movements that send my head and neck into spasm, along with great pain. I could not even grab my neck this time to protect myself from further injury. A headache follows every time.
Tears pushed out from my face with weeping when I could breathe more than a couple times in a row. Somehow I blurt out to Steve to please pray. These episodes have appeared demonic more than one time in the past and I sensed that could be the case on Sunday night as well. It was just too frightful to be a simple seizure. Precious Lord, why do I have to be awake and witness this hell, burning it into my memory then try to function sometime later as if everything is alright again with the world when it certainly is not? It’s like an abusive trauma that repeats over and over again so that your spirit never can heal, always remembering, always fearing its return. I may never know the answer to questions that I have asked, researched, prayed over with THOUSANDS of convulsive episodes over 8 years of chronic illness. And grievously, dozens of the episodes have been really dark ones like this one. But only 2 have been true near-death experiences.
My breathing got shallower yet I was not gasping for air anymore. The room was already dark from Steve turning out the light for me to decrease sensory stimuli; my vision was dimming further as I felt my very life closing in on me, my left eye pulling shut on its own. I started to feel as if I was leaving my body and wondered if I would pass out before my breathing would stop altogether? Is this how it works when people die in their sleep? Or does their heart stop beating before they gasp one last time for air? Do they know what is happening and does it terrify them when they cannot stop the train wreck from reaching its fatal impact? Why did I seem so far away in my mind’s eye yet still feel the painful stiffness of my weary frame shoved into the foam topper on the bed?
Somehow I became aware of my beloved lying behind me and blurted out my final goodbye, “I love you Steve.” He replied, “I love you Julie.” It’s all I could say. Then I saw him in front of me. Well not really but in my mind’s eye, I saw the archangel Michael coming for me. He told me to follow him and drew me away from the present tense towards another dimension of space and time. “Follow me,” he repeated. I saw no white lights as the scene was actually rather dim making it difficult to see anything else but the back of his right side as he turned to lead me away somewhere. I didn’t ask where, I just “went.” Then I became aware of another figure. This one did not show me His features but I knew Who it was. It was Jesus. He looked at me for awhile with tenderness yet directness all the same. Time did not stop or move forward . . . it simply was not there. It appeared that some sort of evaluation was going on or maybe it was some sort of test. I had no thoughts. I just waited there before His presence.
Then my Lord spoke. “It’s not time yet.” I wondered in my spirit what He was talking about? I couldn’t process the words. I actually do not recall breathing just then. By this point, Steve had reached his arm around my waist to check if I was still breathing. He would tell me later that he was wondering in this moment if I was going away for good? The seizing had stopped. I had become unusually quiet. And I had stated the phrase that many people say before they take leave from this life: to express their love for the ones in life they hold so dear. I do recall hearing him sniffling. At some point, he got up to blow his nose. I was becoming aware of my surroundings although still engrossed in the encounters I was having: quiet in my spirit, listening submissively, starting to realize how similar the present reality really is to that of an eternal one. THEY ARE ONE AND THE SAME. I had felt myself “leaving” but never felt separate from my body per se. What was happening to me?
Michael led me backwards, fully back into my fragile frame and the place of brokenness where I have spent tens of thousands of hours, there on our bed. I wept deeply. Bitterly. Tenderly. To the point of emptiness. I took inventory of my self, my situation. Where am I now? Let’s see, I am still lying here and yes, still breathing. Steve is still here with me and the room is still dark. I am not convulsing anymore. I am finally warm. My body feels war-torn with pain throbbing from every joint, burning flaring in the tips of my toes and fingers. (That burning is an indication to me that these episodes are a medical crisis yet to be solved as it has a name: peripheral neuropathy. It gets worse during and after episodes.) My mind was too empty, too traumatized or maybe in shock of what I had experienced to say anything aloud. I just had to dwell there with my beloved for many moments before I could re-orient myself to life again. I wasn’t 100% sure that I was back in the world yet.
Finally I asked Steve, “Am I still here?” “Yes,” he said quietly. He would later say how grieved he would be if he had lost me that night. His eyes reddened and we both cried on the inside, me crying all over my face as well. Eventually I asked him if he wanted to know about what I had experienced and he did. He believed my story. Something had stirred in his spirit as well. I believe that is why he reached out to check if I was still breathing. We didn’t and don’t really now how these things work, the Biblical perspective on near-death experiences, nor what it all meant for our lives together. Does this mean that I am cured now of the seizures? Did it mean that I would now be free from demonic oppression? Did I really have an encounter with my Lord and Savior, Jesus Christ, or was it some cruel trick by Satan and his minions? If it was a test ordained by God, did I pass?
I crashed into a deep sleep for a couple of hours, even though I had slept or napped most of that day. I woke up in the middle of the night ravenously hungry with gunk in my nose, forcing me to get up to do a nasal treatment and make some food. By the time I was done with all of that, I was wide awake and it would take hours for me to get back to sleep. Too soon I would need to be awake for a medical appointment, some errands, and a visit with the first of Steve’s family now in town for the holidays. How in the world would I do all of that on THREE HOURS OF SLEEP, an ENTIRE WEEKEND OF SEIZURES plus a NEAR-DEATH EXPERIENCE? By the grace of God, of course. And so I did. I made us a fabulous breakfast and did everything I needed to do, albeit loopy and somewhat forgetful in a health food store later that afternoon. It was over 18 hours before I could get back to bed again . . .
I have come to see that time and eternity might not be that different from one another. We measure time with our watches but our Lord measures our hearts within the experiences He ordains for His purposes. I need to reflect and study all of this some more. How I managed to get my errands done plus a short-and-sweet visit with Steve’s family is beyond me, perhaps supernatural. The day after was a mixture of sleep and a return to sickness with a terrible seizure spike right before I was hoping to go to a Christmas Eve church service with Steve and his family. It didn’t happen. Dang. Very sad. One thing has became very clear though: I am done with famcyclovir! My time on that medication is NOW OVER.
The rest lies at the foot of the cross with my Jesus. After all it is Christmas: when we celebrate His victory over death with the miracle of His birth. Maybe there will be a miracle for me too? JJ
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
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.
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!
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