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

When Garden Art Comes Home – UPDATED

About 5 years ago I decided to send a letter to the owner of my childhood home.  There was a unique piece of garden art in the backyard placed there over a dozen years ago by my now deceased Mom.  Is it still there?  If it is and you find that you no longer want it, would you kindly let me know?  I didn’t hear anything and never drove by the house during that time to see if it was still there, visible from the street.  Life went on until I got a surprise phone call on Friday, June 5, 2020.

I found your letter in the back of a bathroom cabinet when I was remodeling a few months ago.  I have the metal piece sitting outside against the house in the backyard if you want it.  I figured it would be meaningful to someone.  Give me a call if you do . . . 

I was in shock!  Holy cow!  Mark J had moved the garden gate on the “hill” that was once a landscaped bed, to the side of the house, with the concrete footer still attached.  I talked to my husband Steve (who is always up for a driving adventure), thought about it overnight, and then I got really excited!  I called Mark on Saturday and said YES!  We’ll come get it!

My childhood home is in Warren, Michigan.  I had moved away in 1983 after college to the Chicagoland area then again north of Fort Wayne in 2007.  Favorite plants made the journey here as well.  But I never would have expected that this prized possession of the original garden master in my life would come home too.  I called my brother right away and had some fun reminiscing about our garden projects with our mother over the years.  I sent him photos of the garden gate on Saturday when Mark forwarded them to me.  Plans were coming together to drive up to Michigan on Sunday to pick up our new found treasure and have a quick visit with my brother and his family as well. 

The visit never happened.  Or at least not yet.  Twenty-six minutes before Mike would have received the photos that I sent him via text, he went into a medical crisis that would end his life.  He never saw the photos.  We did not drive to Michigan that weekend.  The project would need to wait to address more important matters now before us . . .

The meaningfulness of this experience and simple piece of garden art is now greater than ever before.  Mementos are like that, aren’t they?  Mike made his gateway to heaven the very day after our Mom’s garden gate came back into our lives.  Steve and I made our way to Michigan shortly thereafter to retrieve this memorable artifact from our personal heritage.  It’s a little thing in the scheme of life yet I’ll bet that I’m not the only one out there with meaningful touch points in his or her garden beds that reflect your stories, your loves as well.

I’d love to hear them. JJ

The gate swings open to my delight!

He knew

Still in shock from the news, with tears coming forth without notice

I grieve the sudden death of my brother and all that it means.

Where do I begin to tell the story of his life and mine intertwined?

I just can’t write very well right now.

One dynamic is clear though.

Just before he died, he had come to know and convey despite horrific suffering

That life in Christ is worthy of our primary focus. It supernaturally transcends the incredible chaos of our time whether it be in our own broken frame or the society at large.

I don’t think he lived this belief out perfectly in all areas of his world. But in conversation with me, his witness was clear: LIFE as in LIFE IN CHRIST is the most important matter of our days.

With this I find it curious that his final words to his companion and caregiver of many years were, “I don’t want to die.” But Mike, to live is Christ, to die is gain (Phil 1:21), ultimately to be with the Lord and perfectly whole. Why did you not give in to death when in a coma, when seizing, when facing searing pain and be truly free? No one would know and no one would blame you for letting go. You didn’t even do so until the Lord called you home. I am seeing in you this gift of perspective that I have not been able to realize in my own time of battling serious illness. You got it right! I need to get it right too.

Thousands of waking seizure attacks have ravaged my body over the past 8 years. The health complications that came along the way have brought much grief, guttural cries out to the Lord for relief. Experiencing my brain on fire when I am still awake has brought traumatization, triggered memories of past incidents of trauma, stirred emotions that took me down, down, down. If there was lingering bitterness from the abuse of my past then it had no where to go to heal when every month it seemed, there was a new medical problem/diagnosis/treatment to consume my days. Sure, I tried to live around the compendium of illness; weather sick or faking wellness, I see now that my focus has been in the wrong place too much of the time. I need more of Jesus Christ and less of everything else NO MATTER WHAT IS GOING ON AROUND OR WITHIN ME.

I have struggled to read my Bible and pursue even passive activities that can strengthen my relationship with my Savior. It’s been really, really hard to do so. Somehow my brother Mike figured it out despite his suffering. He could only use one hand! His body erupted into violent spasms without warning. The simplest of self care tasks were laborious beyond belief. He has been bedridden for most of the past few years. And the pain. I don’t know if anyone really knows how much he endured, how much medication or cigarettes it took to numb the torture of severe contractures from a stroke about 5 years ago then subsequent medical mismanagement (or minimal management). So did he talk about all of this with me? NO! He chose share what he was studying in his Bible instead. He asked me important questions that I was barely able to answer. Mike meditated on the significant issues of life itself. He saw beyond the life his broken frame, not wanting it to end despite his suffering. Mike dwelt for hours each day in the presence of our Lord and blessed me in return by his doing so.

Mike really did not want to die. I get the sense that it was because he wanted to be here when the Lord returned in glory for His church. Mike thought he would be here for the rapture. Sometimes I think that I will be here for the rapture too, and that it might not be far away with the absolute chaos going on in our country. Despite my own faith in Jesus Christ, many times I have wanted to die. I have been overcome with despair, enough so that I could not imagine living another day with my own suffering (described here many times, portrayed on my YouTube channel). My faith has wavered at times when challenged by the worst ravages of chronic illness. I am not proud of it. This is important to share however, as I know that I am not alone. Tis better to bring these issues to the light of day in the right way at the right time. Now is that time. My brother’s witness to me that I finally got to see in his passing from this life is a proverbial fork in the road for where I want my life to go from here. I got this perspective from you Mike. Thank you. You have finished well, the task of ministering to your older sister whether you knew or not that you were doing so.

Thank you my dear brother in Christ. On Friday you told me that you knew that one day you would be healed. That prayer was answered just one day later! I rejoice that you are now leaping like a deer on high places as you dwell with our majestic Savior in the heavenly realms. See you one day when the Lord calls me home too. Until then,

Heyyyyy Mikey! I love you. 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.