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!
Turn on the electric bed warmer pad ahead of time to warm the sheets then turn it off when going to bed. Warm sheets decrease the shock of otherwise cold sheets that have triggered episodes in the past.
Adjust the thermostat if the weather is cooler so we don’t overheat when sleeping.
Remove the comforter and 2 decorative pillows from the bed and place in guest bedroom.
Position a pillow where my knees would go and another where my back would go and another to hug in front of me. This allows positioning for what therapists call “back precautions.” Knees slightly bent with “neutral spine” alleviates pressure on my low back.
Foam pillow top over the mattress cushions the bony prominences and joints. So comfy!
My Pillow-brand pillow contours to the head-and-neck nicely for switching from side to back overnight without pushing my head too far forward off of the mattress.
Wear a long-sleeved shirt over my bed clothes to keep my neck and shoulders warm overnight.
Take nighttime supplements and hormonal creams but not too close to bedtime for the former.
Moisturize with various products for various body parts!
Now apply an eye cover to create darkness for better sleep.
NEW: pack of ice wrapped in a hand towel placed mid-sternum. Calms vagus nerve to actually decrease convulsive episodes!
Temporary addition: cardiac event monitor control pack tucked into a pocket for 7 days. In the event of an episode or worrisome symptom, get up and go into the bathroom to record the incident. (The unit has no night light!) This is one of SIX tests in a workup going on right now before seeing a cardiologist who specializes in electrophysiology. This all came about when I noticed some heart rate variances during episodes. More clues towards a potential cure? We shall see.
Get up in the middle of the night (or morning) to complete sinus rinse procedure if I wake up with annoying sinus drainage. Go to the front bathroom if Steve is still sleeping. Attempt to go back to sleep or do a passive activity until I am tired again. Eat, take care of the dog if needed.
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 . . .
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
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.