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

Not nicer but deeper

Signs of spring abound juxtaposing the promise of new life with the reality of death in this season of both green and black, this season of life altered by a rogue virus. How can we possibly take it all in?

The goodness that we can find in our shared humanity isn’t far off as neighbors serenade the streets with music. We put teddy bears in the front windows of our homes for the kids passing by at a safe distance or join masses of cars flashing emergency lights to support the healthcare workers laboring inside our local medical centers at night. Each gesture brings a smile, some warmth for a brief moment in time.

Conversely it seems that the fear of a silent killer has intensified the divisiveness, the viciousness in social and public media to levels not seen since caveman days. Our society has gone beyond simple disagreement to sarcasm and its true definition: to “tear flesh.” Hatred, really. It doesn’t matter to the masses that we are all in this together, that we are all at war against the same enemy. The process of dealing with COVID-19 will reveal the good and bad in each of us at some point. The stress is crushing in the weakness of our humanity. If you looked more closely I believe you could say that below the surface, we are all hurting from the loss of life as we once knew it.

I’ll never forget the 2 women joking about the newly coined term of “social distancing” in front of the organic produce section of our local grocery store as we waited our turns to step up and select a vegetable or two. That was only a month ago. Yesterday no one was joking in their combination of bare hands or gloves and masks, grasping a sanitized shopping cart, and standing 6 feet apart on the blue stickers marking the floor at the checkout line. The air was tense as I observed the cashier wearing only one latex-free glove, the gal bagging our wearing a re-usable cloth mask and no gloves, then me taking off one of my sweaty gloves to sign the screen of the credit card reader (before sanitizing that hand with a little bottle of same in our truck). This is nuts!

I submit to you that overall the COVID-19 Pandemic is not bringing out the best in people yet. I am glad and grateful to see the goodness here and there. I do believe that most of us in our hearts are somewhere between survival mode and beast mode. We are struggling in our own strength to establish some sort of normal routine while living in the chaos. That is simply not possible yet. How can we do so when in the back of our minds we are wondering if we or our loved ones will be the star of that leaked YouTube video of the patient dying alone in an ICU bed or worse, packed in a black bag in the refrigerated truck parked outside the freight entrance of the hospital? Yes, this is way beyond nuts!

Experts tell us that the world here in the United States will get worse before it gets better. But probably in each of our own private spaces and places, there will be some nice things that will happen. Some loving and meaningful moments will be in the mix. But we must ask ourselves if that is enough? Is it enough to just survive the pandemic of year 2020 with a few GIFs and memes from Facebook in our minds? Or conversely do we throw up our hands, succumb to addiction (including stuffing ourselves with food) and say if we die, we die? I mean really, how does one cope when the world is going increasingly mad?

You go deeper Gentle Reader. You go deeper than asking how or why or when or where or who or what. You go deeper than the comfort of your own bed (if your are blessed to have one) and kitchen full of food (if you are blessed to have one). You ask yourself what life will be like 2 months from now when your housemates can’t stand each other anymore or your employer had to close its business after all, when the government goes bankrupt or the earth groans with the tragedy that actually didn’t take us all out. You ask yourself about the value of your own life and the ones you love and further, the very meaning of life itself.

I pray that it is sooner than later Gentle Reader, that you will go beyond the darkness of days to go deeper still. For it is then that we both will know without any doubt that we were never alone in all of this mess. There is a purpose and a plan. We will find a peace that transcends the mess of this world. This is not of ourselves such that no man may boast. We simply are not strong enough. All along the way the God of the universe is watching, waiting, listening, grieving, loving, and ready to see us through no matter what happens. It is for His design and glory that we live. Say what? How can I say this? I found the answers, the truth in His Word. I found that the Lord ordained supreme testing within a horrific illness I endured and battled over the past 8 years. And through it all, there was meaning and purpose. I was never alone. He was always there with me whether I felt His presence or not. And always there was peace beyond the strife. I escaped death more times than the 9 lives of Morris the cat; COVID-19 doesn’t change a thing whether I live or die. My eternal life that transcends the strife of this world began a long time ago.

The world simply will not, no never satisfy the groaning, the longing of our hearts. That place is for Jesus Christ alone. Want to explore this topic further? Go right now to the book of John. Find a Bible. And dwell amongst the pillars of the King who loves you so! Do it now before it is too late. JJ

I long for you

My intended beloved, oh man of my longing

How is it that these things come between you and me?

I lie next to your warmth, oh so ready to imbibe

Til the horror of illness keeps me far, far away once more.

Albeit evil it must be:  a test for my weary, so weary heart

You know my lord and my Lord that I do shake with grief so!

Perhaps just for a time, please wait for me love

I shall return soon when illness has gone one day, I promise, I do.

Until then know that you are the one for whom that my heart sings

The one who loves me so, beyond that which I can even wanton,

My knight in shining aluminum, we jest, but you are indeed more

And know me well, I love you too . . . this is all I need to know to live.

Our Jesus is out in front of us two leading us on

When darkness comes, oh here it is again, we shall not be moved;

Hold me as you are able or as my frame lets you in

Forever in my heart you know you will for always be with  me.

Solomon, 3:4, Christian, marriage, trials, chronic illness, sickness, intimacy, sexuality, wife, husband, Lyme, seizures

Hydration is Key

dehydrationHydration is key in health and down to the other

It makes everything better from one end to the other.

When I thought a drug might be my saving grace

I found that it was water that was my Lord’s gift of grace.

In 3 days and 2 nights 4,000 ml ran through my veins

In addition to many drugs in my tummy not my veins.

There was sparing of upsets from what I could not tolerate before

That number of drugs with Pepcid became my friend now like never b—–.

My Lord knew then showed my naturopathic Doc a few days later

That I would need to push fluids like never before for now and onto “later.”

So Smart Water and minerals in our Big Berkey will be my constant friend

When isolation of this Shingled hell keeps me from family and friends.

The Lord makes up the difference (as He always has) and grants me sleep

These last few days have been for rest and recovery and the deepest of sleep —

“To die, to sleep – to sleep, perchance to dream – ay, there’s the rub, for in this sleep of death what dreams may come…”

Hamlet does question if even death will bring dreams that will prevent peace when it comes.

But he is wrong for peace is granted here and now for those who believe no matter what may

For those who believe in the Lord who conquered death and knows the beginning from what may.

So once again, a thousand times I shall again proclaim

Alone in my Jesus I will drink the victory only He can proclaim!

************

If you are struggling this night, Gentle Reader, please hang in there.  Let me know your needs and I promise to pray as I lay your alms before our mighty Lord of Lords.  He cares for you, He cares for me.  And Lord willing, we are going to get well sometime between now and the day of His return.  Oh how I do hope you know Him this way?  JJ

Uplift Thy Mood with These

 

And a little something special from my past: