Here’s my starting place on 8.6.2020
Here’s my starting place on 8.6.2020
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
If it weren’t bad enough that the beast meets me as I am falling asleep each night and before most naps, add to it the treatment rituals that make my bedtime routine laborious to say the least.
Here’s my brain dump to maintain my sanity, my health . . . Such as it is, that is!
Do you see a typical nightly skin care routine in there? Nope. I guess I am a “high maintenance” woman of another type. Exactly what type is that? A very odd one perhaps! Such is life. Better go start the routine . . . It’s nearing 5:00 a.m. and my bedtime is approaching. Yes, things are nearly reversed again in an attempt to wait until I am exhausted before trying to sleep. Seems to help, except when I have an appointment the next day. Then I spend the next 24 hours trying to catch up. Ugh. Sigh.
Our pup is so very confused by this routine! Good thing she has furry eyelids to keep out the light. Maybe I need them for my nightly mayhem too? JJ
Visiting a nontraditional farm in the large town near us was a delight last week. I learned a lot about urban farming and the work of both Purdue Extension staff and community volunteers in making a difference in what is termed a food desert: an area of a city where it is difficult to purchase fresh produce. Another type of education came as I was leaving the innermost part of this city. I’d like to share more about that here.
As I was leaving the former Firehouse #9, renovated to become the education and gathering center of Johnnie Mae Farm, I recalled that several male young adults had walked through or around the property. I shouted out a friendly invitation to two of them that there would be a market day there on Friday and that they were welcome to stop by! My wave to a neighbor on her porch was easily exchanged as I drove my truck away from the vacant lot across the street. Google Maps pointed me in the direction of home about 12 miles away to the north, in a quaint suburb on the other side of the tracks from here. I had visited this area of town just about every week a few years ago when I was working in home health care and knew the joys and risks of walking into homes in a multi-cultural community. Visits were virtually always completed in the daytime; situational awareness and calling your patient from your vehicle before you approached the front porch were procedures shared by virtually all healthcare workers. I never had a problem except maybe my nervousness from being in an unfamiliar neighborhood.
I needed to travel along some neighborhood streets before turning onto main roads; some of the streets looked more like paved alleys than side-streets. I grew up just north of Detroit in the 1960’s when the new neighborhoods were no longer developed with alleys. If you were able to afford one, garages were built in the backyard enclosed by a chain-link fence that outlined your backyard. We played in the streets because we didn’t have an alley; this was actually less safe as our games were often interrupted by passing cars! Often we knew who was driving by or we made note of those we did not recognize. It was our sense of community even in what would become a sprawling suburbia, followed decades later by neighborhood associations. Turns out that the squared-off streets of the inner city where I travelled this day are no different . . .
Suddenly in front of me, I noticed a sedan had just turned onto the street with one of those motorized mini-cars on its trunk: the kind that kids like to drive on the sidewalk pretending to be just like Mom or Dad. I had wondered how it was attached so it wouldn’t fall off when WHAM! it went tumbling onto the pavement into the middle of the street! Pieces of fender and side panels broke off and flew into different directions! Oncoming traffic slowed down and for a second time stood still. I was already past them when I realized that whoever was driving that sedan would have a struggle to retrieve the toy car in pieces on the concrete let alone get it home again. Was it totally broken? Holy cow, what a mishap! I looked back briefly in my rear view mirror. I couldn’t help but wonder what these folks were thinking anyways? Didn’t they try to secure it to their vehicle? Didn’t look like it was attached at all.
Then an overwhelming feeling came over me that I needed to help out somehow. There was no where to turn around easily so I made a left onto a side-street, an alley, turned around, and made a left-hand turn back onto the 2-lane road. Just as I got closer, I saw a man from across the street run over from where he was standing on his front porch and start to help pick up the mangled pieces of plastic. There were two women driving the transport vehicle that were now rushing out into the street, having barely pulled off onto a side street. I practically swerved into oncoming traffic as I lowered the window of my truck and yelled out, “do you want to use my truck?”
I really don’t know what I was going to do if they said, “yes!” We are all living in the middle of a pandemic and person-to-person contact is difficult at best let alone amongst strangers. I guessed that I would open the tonneau cover over the bed of my truck and help them load up the toy car then follow them home to deliver it. But where do they live? How far from here? Is it safe? And before I could even think this through at all, I realize that the man was getting into his SUV on the same corner, as if to move it forward to load up the pieces and such. Or I guessed so. The two women looked like a Mom with her Mother and gestured over to the man as if to say that he was going to help them. It all happened so fast. The oncoming traffic was getting closer an now I was blocking traffic!
And then it happened. As I was trying to jackknife myself into the correct side of the street, I exchanged full eye contact with who I believe was the Mom of the child for whom this fun toy car was lovingly being brought home in her vehicle. It was possibly the only means of transportation she had available that day. Perhaps she was bringing the toy car home for a birthday present or surprise for a good little boy or girl. She looked at me squarely and said, “thank you.” The older woman looked over just as my attention turned to my task of getting out of the middle of the street. The man looked my way as well. Just like that, the problem would be solved by one neighbor from another street helping a Mom and a Grandmother on a hot Monday afternoon.
Something happened in my heart as I pulled away from the scene. Her look penetrated what had become a little distancing from my love for helping people since no longer working in healthcare. This moment transcended the tension that I didn’t realize I had brought with me on that trip that day. Another dynamic going on in our society as I write this are violent protests in large cities over race, political extremism, and control. Many of our cities are struggling for law and order putting businesses, the flow of societal norms, and the ability to function in our communities into varying levels of chaos. People everywhere are on edge. This has included our smaller city of 300,000 at times but not-so-much where I live north of these innermost parts of the city. Yet here I was just blocks away from where most of the violence took place just a few weeks ago and in its place, witnessed the BEST part of what “community” really looks like. Nothing has really changed! People still see each other and help each other out for the most part. Spontaneously! Without regard to checking the time of day, political correctness or narratives, along what street your toy car lands on the pavement.
Lastly, the people that I just encountered in a friendly little neighborhood in the big little town of Fort Wayne, Indiana never looked at outward appearances before reaching out to help each other. We represented four different races. We each lived in 3 different neighborhoods. We stopped traffic for a moment and it was a good thingy, for a good cause, for a little kid or two waiting in the wings. This experience was a wonderful marker in time and an important reminder that people still do see each other, do care about each other no matter what is going wrong in our society. I want to remember this encounter the next time I see someone in need. I will still invite the two dudes in gang-banger type garb walking down the street to a produce market day! I want to remember all of this the next time I am tempted to feel something different than the warm reality playing out in front of me.
Save the toy car people! It’s worth fighting for, eh? JJ
I realized something important on Monday. Sometimes what goes on is just the people in the neighborhood helping out one another. Colorless. Selfless. And precious. Here’s what happened.
Interviewing our local extension educator is always a mix of spontaneous fun, fascinating information about the topic at hand, and stories that reflect her love for the people she is positioned to serve. Such was my experience once again as I toured an urban farm on the southeast side of our relatively small town.
The deeper into the neighborhood I traveled, the more I felt conspicuous. A lady driving alone in a shiny bright pick-up truck is tough to miss on a hot, sunny afternoon! Well maybe not in Indiana farm country but this was south of the tracks in the roughest zip code in our town of about 300,000. Nonetheless, I was there to learn more about a non-traditional farm that serves the residents of what is called a food desert: an area where it is difficult to purchase fresh fruits and vegetables.
Johnny Mae Farm provides just that alongside members of the surrounding neighborhood, in addition to food and nutrition classes in the renovated former Firehouse #9. The building is adorable and the 3/4 acre farm area behind it was constructed with everything that is needed to produce hundreds of pounds of fresh produce each growing season. The hoop house employs the latest and some experimental farming techniques including raised beds, container gardening, and ground-level drip irrigation systems. Outside is where you will find dozens of mounded beds arranged in long rows to minimize contamination from the soils underneath laden with by heavy metals. Three homes in this neighborhood were purchased then demolished to create the farming area, divided from the firehouse/education center by an alley road of hard-packed gravel. Homes surround the farm in addition to a boarded up VFW hall across the street that is as old as dirt. (Well at least the sign out front was anyhow!)
I learned a lot that afternoon. I have come a long way in my knowledge of vegetable gardening since moving to Indiana and becoming a Master Gardener. But it takes actually growing things in your own space and learning from the locals to really get any production above a few salads and meals. This farm is wildly successful, even with alkaline soils recently discovered in those mounded rows (and to be amended in the fall); all of this is because of the organic farming experience and horticulture knowledge of our Extension Educator, Terri. Three Sisters plantings of corn, beans, and squash. Yes they have them. Companion planting? Well done I must say. Native flower pockets along the fence to attract pollinators. Check! And so much more. I left not only with enough information for at least 4 articles in the Master Gardener monthly newsletter (Across the Fence) but tips I could immediately put to use in our own veggie gardens. Cool beans I say, literally.
The real education came as I was leaving. And that will lend itself to Part 2 of this story. It’s going to get real personal from here . . .