What else could they do?

The glass chamber is designed to match your body temperature while you complete the subtests of the Pulmonary Function Test. Mike did his job. Steve helped where he could. And for me?

The trauma was REAL.

The cardio-pulmonary work-up continued this past week with a carotid ultrasound, beginning of a 7-day EKG event monitor, and the torture chamber otherwise known as a Pulmonary Function Test (PFT). Perhaps the PFT is not designed to create stress but completing it between 5 sets of convulsive episodes was a real bite in the shorts!

I knew the risks for me for the PFT from having completed one about 5 years ago. We were unable to progress to the section administered after a bronchodilator medication because of convulsive episodes triggered in the first few subtests. So this time I asked my beloved to drive me to the hospital for the test and brought with me several rescue remedies that sometimes stop the attacks. With assistance to administer them I might get through it all. When Thursday came I was not motivated to head out the door for the hospital and after only 4 1/2 hours of sleep. Looked like it was going to be the same story, different day.

The first part of the test went alright as Respiratory Therapist Mike kept a close eye on me. I had given him the spiel of what can happen if I had a seizure attack, including the request not to call the paramedics if I had an episode! He said he understood and actually stayed calm throughout the entire ordeal. Seizure-like tics began after the 2nd subtest and most of the ones that followed. Steve graciously brought me the ice pack I had in my lunch bag which served to slow each episode once placed over my sternum. We continued and eventually got it all done like a good beating on a warm summer day.

The test that required you to breathe against resistance was particularly frightening. When deep breathing or panting re-triggers the episodes, I thought that surely breathing against the mouthpiece where my airway would be blocked would be good. On the contrary. It actually calmed me down considerably! Holy cow. Have we found another tool to help control these dang things? Mike said that breathing against resistance stimulated the vagus nerve. Well there you go again. I first started looking into vagus nerve seizures and treatment strategies at the beginning of 2018. This ultimately led me to see a Craniomandibular Specialist and the rest is now history. But here we are again. The trigeminal nerve of the TMJ and the vagus are interrelated cranial nerves. To date only these 2 of the many vagus nerve stimulation techniques I have tried have proven to be helpful. Turns out there is a difference between the sympathetic and parasympathetic fibers of this 10th of the 12 cranial nerves; the trigeminal is the 5th. We shall revisit this topic here again another day for sure.

The PFT was scheduled for about an hour. We left after 2 hours! Each time there was a trigger of seizure-like tics, we had to stop for me to struggle to pick up the ice pack on the laminate floor of the glass chamber, apply it to my chest, then wait for things to calm down again. The violent shaking wrenched my neck. I longed to lower myself to the floor and curl up in a ball, holding my head and neck. The pain, the pain. At home I struggle (or Steve carries me) to lie down someplace safe where I can grasp my head and neck to prevent whiplash. Not so during the PFT. My right leg banged against the metal frame and glass walls of the chamber a few times; my body tensed with fright as I feared falling off of the narrow stool and onto the hard, linoleum floor. No warm blanket was anywhere to be found. Mike and Steve just watched in silence each time. What else could they do?

Times like these finds me terrified of falling and getting injured. Gratefully I have never fallen even after thousands of these wretched episodes. But initiating movements of any kind to either speak, break a fall, or otherwise create safety exacerbates the directionality and velocity of the seizing; this in turn creates a high risk to fall or get injured! Too bad that I am awake to remember all of this hell unlike an epileptic seizure where the person is unconscious. (Well it’s probably good so that I don’t have the injuries that can come with falling after passing out.) I guess it’s my own form of grace manifest as survival mode. Tense my muscles to prevent of a fall but trigger a rebound: increased rapid-fire, uncontrolled shaking of an appendage or two that may bang against whatever is nearby. Metal frames and glass walls. Still can’t speak most of the time. Breathing? Yeah maybe. Oy vey. I hate this!

It took awhile after the PFT was over to regain enough muscle control to walk out of the chamber of doom to a chair across the room. Perhaps it will be diagnostic for the cardiologist later this month as to why forced-breathing maneuvers trigger such bad episodes? Maybe the test results will show something this time? Everything flooded my mind as I tried to be pleasant to the two men staring at me the whole time who were powerless to do much to help. They were both most kind. I could see it in their eyes above the masks they both wore. (I was the only one allowed to remove mine! Go COVID-19!) Mike and Steve remained standing as I slumped into a hard plastic chair in the opposite corner of the room. One of them asked if I needed anything but I just couldn’t speak very well yet to respond. Managing the wires from the EKG event monitor, holding the ice pack to my chest, and groping for a snack bar in my lunch bag for something to revive me was about all I could handle. Steve opened the packaging of a Clif Nut Butter Bar and helped me get a drink of water. He knows the routine well. Love that man!

Cracking jokes has been my way to bring humanity to this hell when someone new comes along for the experience. “Welcome to my nightmare.” “I guess I’ve completed my involuntary exercise program today.” Or something similar are my usual bylines. I let a few fly. Before long we were leaving. I was walking verrrrry slowly however.

Somehow I got through a telehealth medical appointment a few hours later followed by a full day of several long blocks of sleep. Thankfully I had made some food ahead of time and thankfully Steve was willing to bring me a meal later on as I began to recover. My Skype appointment on Friday needed to be cancelled and I declined an additional make-up appointment from a second Provider. I was too weak and shaky. About all I accomplished on Friday was a load of laundry and achieving many levels on a word game app. The pup got lots of scratches too.

Two days later I realized how traumatic all of this was. A dearth of tears busted out after yet another bad episode and eventually I got the story typed out here. Perhaps someday these wretched convulsive episodes will stop. Maybe my beloved Steve and I will actually get a peaceful night of sleep on a regular basis, together. Maybe my life will be about the volunteer stuff I get to do here and there instead of medical appointments every week. Seems like we are getting closer than ever before to the mechanism of action of what triggers and what stops these waking, convulsive episodes; I have a few rescue remedies that keep me out of the emergency room these days. Yay God! Lord willing, I pray and plead, my Jesus will mercifully bring me to complete healing. Maybe someday soon? JJ

King Tut Grass and Cannas @ParkviewHealth
Mandevilla vine, Begonias, Geraniums (right) and Potato Vine (left) @ParkviewHealth

More Like a Dependence Day

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

Never Give Up

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.

Another Direction Has Begun

In this series of 1, 2, 3, and now this 4th blog, I share the pain and agony, arduous process of desperately trying to find hope through yet another medical crossroad. The discovery then extraction of an infected tooth was akin to placing an entire 8 years of battling a serious illness into a 2-month window of broken shards of glass. The infection was discovered on March 16th and the first surgery consult on April 11th. The second surgery consult resulted in the surgical procedure on the same day of April 22nd. Two treatments with IV ozone BEFORE the extraction showed promise to end my worst symptom of convulsive episodes however the gains lasted 3 and 2 days, respectively. Then there were horrible complications after the tooth was extracted. The 3rd treatment with IV ozone yielded 4 days of reprieve and a considerable reduction in pain and inflammation of the gum tissue below tooth #19. We are now optimistic for what the 4th treatment will bring later today. I have had more better days in a row after the 4th infusion than in the past, well, very very long time!

It really looks promising that another direction towards healing has begun. It really looks like the extraction of two other infected teeth in 2015 then the craniomandibular treatments in 2018 are related to the current dental issues: they all relate to the innervation and bio-mechanics of the trigeminal nerve complex, particularly on the left side of my face. I suspect that there may be a vestibulochoclear component as well since certain noxious sounds can trigger a neurological event. Infection leads to inflammation; suboccipital constriction from the trauma of repeated seizure attacks clamps down on those inflamed nerves. Ongoing inflammation of the cranial nerves, including the vagus nerve, keeps me on edge and from getting well. The visit in Indianapolis tomorrow will include an osteopathic evaluation and treatment in addition to 10-pass IV ozone. Tis time for my entire cranio-sacral rhythm-and-function to calm the heck down, get straight, and fly right!

Did I tell you about the garden bed we were able to put together this past weekend? My body hurt like heck yet my spirits were lifted as I pursued one of my life’s passions: all things gardening. How poetic for me to be planting a new garden bed in the spring of this year, just when my body appears to be springing to new life? God is so good, Gentle Reader. He does sprinkle His goodness here and there even on our worst of days. And this past week we had a down-pouring of it, literally! The day after Steve and I pushed to get all of our veggie beds ready for planting, the heavens opened up with a day of soaking rainstorms. Like washing everything clean. Like nourishing the dirt for the newness of life to follow. Like paving the way to bloom where one is planted . . .

I’m good with all of that for sure. JJ

Another Direction

After enduring hell on earth with dental professional #5 in my search for answers, I have decided to go another direction. Nine hours from now, my beloved hubby and I will be in the office of a new oral surgeon who will examine me and remove my infected tooth in the same visit. The procedure will include IV sedation in his office and not in a hospital setting. By this afternoon, we will be home and I will begin another process of recovery. The shutdown of “elective procedures” due to the corona virus which has delayed this procedure 5 weeks since my diagnosis will thus be overcome.

Lord willing, the convulsive episodes triggered by virtually every meal, even the pureed ones over the last week, will diminish. Will the episodes stop completely? Only my Lord knows the answer to that question.

We have been here before in: 1) 2015 with the extraction of 2 infected teeth (one of which had a root canal with a hidden amalgam) and 2) 2018 with the fabrication of specialized dental appliances by a Craniomandibular specialist. Both interventions brought significant gains however they did not fully eliminate the problems related to the trigeminal nerve complex on the left side of my face. Looks like there is another tooth involved. Looks like that problem is about to be extracted, i.e. it’s OUTTA HERE!

I am weary, Gentle Reader. I am concerned about pain management. I am concerned that while this procedure will solve an immediate problem, it will not stop the convulsive episodes that continue every day. Actually lately it has been multiple times per day: every night falling asleep is when they occur most consistently. My neck and upper traps are quite painful from the wrenching and rapid repetitive movements of the seizure attacks. Everything hurts in my broken frame. I have a headache every day. The mandated quarantine orders and fear of viral infection has kept us at home for most of the past 5 weeks. No Doctor, Chiropractor or Physical Therapy or Detox or IV Ozone treatments. What a crazy time in history to be chronically ill.

With nothing left to give, I submit the appointment later today to the will and covering of my Lord, Jesus Christ. Please carry me and my beloved this day . . . .