Rolling by...

Yesterday I was driving home from my daughter's and needed to potty. Parks are my regular go-to for potty breaks, if I find a park in time. Thing is, around here, once the seasons have turned cold, park bathrooms are usually locked. Often a port-a-john or two are placed at the park since bathrooms are locked. But that's not always the case. 

(Like the time in Damascus, VA, when I had to go bad. I got to the park, grabbed some tissue in case there wasn't any in the bathroom or in case the bathroom was locked. It was locked. I saw a bridge that is part of the Creeper Trail. It had a good enough cover. I've had enough practice peeing in public covert places.)

I pulled into the park; it is a huge park. One I'd never visited before. I drove around looking for a port-a-john. I saw a couple buildings that probably had bathrooms, but would they be locked? It wasn't worth getting out of Edward the Explorer to find out.

Some walkers were near one the playgrounds. I stopped and rolled down my window, "Hi. Do y'all happen to know where there might be a bathroom or port-a-john?" 

"We wish," responded one couple. 

Then a man standing near the couple came over, "If you drive down to the Field of Honor, there's a building there with bathrooms."

"Thank you! Happy New Year!" I responded. But I was thinking, Will it be unlocked? *sigh*

I drive around that parking lot out to the park road and follow the signs to the Field of Honor, scanning the woods for places to relieve myself if the building is locked. Maybe, since the Field of Honor is a military memorial, maybe the bathrooms stay open all the time.

I find the Field, its USA flags flying high blowing in the breeze. I drive looking for a building. I see one. It's right near the handicap parking. I pull into the handicap space and sit for a moment in Edward. I see two people walk out of the building. 

Yay! They're open.

I make my way as quickly as possible to the relief station. A ways across a field (but not the Field of Honor) a gathering of maybe 100 people are celebrating. Music is streaming through the speakers. Kids are playing pick-up soccer. Food is being grilled. 

I asked a lady in the bathroom what they were celebrating. She responded with a smile and Latino accent, "Pre-New Year's Eve!" 

After I walk out of the bathroom, a soccer ball comes my way. It makes me smile. I gently kick it a few yards back into the field. A young person runs over to get it. We exchange a couple dance moves to the music, and I ask, "Where is the dancing?" The young man points over to the shelter where folks are gathered. 

I can't see anyone dancing. It's a bit of a walk. But I have my trekking poles and the sun is shining. Why not? I ask myself. I could use some exercise.

It was a blast!!! I ended up dancing my heart out to two different Latino songs. (I can dance more easily than I can walk.) There were only about 10 of us dancing. The folks then invited me to join in on some grilled chicken. But I still had a 40-minute drive to get home. I was going the back way to avoid the ZOOMING interstate. I had driven to my daughter's place via the interstate, and that was enough interstate for me for one day. 

I so desire to get back to living life again.

To roaming the woods and mountains and meeting trail folk.

On the way home, on the back roads which I love to drive, a quieter-than-a-thought whispered as tears welled in my eyes... 

I'm gonna ride again...

("Ride again" refers to my bicycle.)

I don't make New Year's resolutions... 

But I have a new mantra for 2024...

I'm gonna ride again... 

One of my new favorite songs by the band Mipso...

Carolina Rolling By.... 

Workin' on it....

Been thinking about penning more about polyradiculitis. To maybe give it a face. 

I could be that face. My arms could be that face. My hands and fingers and legs and feet and back could be that face. 

I've lived with Polly since late April 2011. Through the years the condition has worsened. Both Hubby and I believe, feel, almost-know that without the (approximately 38) steroid lumbar epidurals and (over 50 rounds) of steroid spinal cervical trigger point injections, I probably would have been bedbound. Other modalities helped too, and still help.

Polyradiculitis is a very rare condition. I've only met one other person who has it. I met her in the neurologist's waiting room. She had it in her neck, on one side. She had great difficulty lifting that arm, which I totally relate too. 

My condition is in my cervical (neck) area and lumbar, on both sides. As Hubby states, "It is a wicked disease." 

Because I landed in the hospital on 4/28/22 with two good-sized blood clots (one in each lung), I had to go on blood thinners. And I had to give up epidurals; epidurals are too risky while on blood thinners. I went off the blood thinners in December 2022. Thus now, I could go back on the epidurals, but...

1) I don't want high-dose steroids anymore with all their side effects. 

2) I developed another wicked condition...insomnia. 

I've read that we humans come into this life with certain genetic vulnerabilities for certain illnesses. But those illnesses may never manifest, or if they do, it is due to certain factors in one's environment that turns on the switch. For example, allergies. A person may go through their childhood without allergies, but then circumstances overload the system and BOOM, allergies. This happened with me in my first chronic illness life; I developed asthma at age 22. And I can pinpoint one of the factors that caused the asthma and hives and other symptoms to manifest. 

On the genetic side, I have at least two female relatives with insomnia that follows a similar pattern as mine. It's reasonable that my insomnia switched on due to the pulmonary embolisms and their stressors, not to mention the load of long-term polyradiculitis. The insomnia started after the April 2022 pulmonary embolisms.

The type of insomnia I and my two relatives have isn't due to racing thoughts (not that we don't have those from time to time); we simply don't fall under. Mine got bad. I would maybe get 3 consecutive hours on a good night; some nights, no sleep. I trained myself to lie in bed with my eyes closed and simply rest; I often used guided meditations through the night. (Thank you Insight Timer.) After over a year, we finally found a combination of pharmaceuticals and herbs that helps. I sometimes now get 6 consecutive hours of sleep. 

Unfortunately, one of the pharmaceuticals has caused me more pain.  But I'd rather live with more pain than with sleep deprivation. Sleep deprivation is horrid. Scary. Maddening. Fortunately, I have been able to lower the dosage of that one medicine, so the pain isn't as bad as it was on the higher dose.

Steroids can make insomnia worse. So, I gave up injections and just take a daily low dose of prednisone. I doubt I can ever get off steroids; it'd probably be too hard on my adrenals. I've been on prednisone daily since July, 2011. 

Okay Carol, you're starting to go all over the place here. 

One of the points I want to make is regarding loneliness. I realize these days that loneliness is considered an epidemic; at least that's what I've read. Personally, I think part of that has to do with social media and its misuse. 

But loneliness is also typical when one lives with a chronic illness or disability that severely limits their energy to socialize or do other things that 'should' be easy to do.

That's me. I seldom have the energy to socialize. For the past year-plus, I've been basically homebound except for medical appointments of which I have 2 to 3 per week. If I feel up to it, I will visit a local park for a stroll after an appointment. I use trekking poles or my rolling walker to help me along. Thankfully I can still drive, though it's a feat to get in and out of the vehicle. I realize I am fortunate that I can drive and that I'm not in a wheelchair. 

And yes, I hurt. All the time. Even in my sleep. My arms and hands are the worst. One morning in the last month as I was going through the morning ritual of getting my arms to work, the thought hit me, China doll arms. That's what my arms feel like. China doll arms.

Movement takes a lot of effort. I have pain, weakness, and fatigue in all my limbs. I have troubled knees. I have kyphoscoliosis. [I've had scoliosis all my life, but it was never an issue until around 2018. I shrank three inches in four years (probably brought on by hormonal changes that accompany high dose steroids) which brought on the kyphosis. I went from 5'2" to 4'11." In 2018 I purchased an inversion table which I use almost daily. I've been holding at 4'11" since then.] I recently developed TMJ after (again) using my teeth as tools because my hands aren't strong enough to do certain tasks, like opening a baggie. My bite is slowly returning to normal. 

Dressing, undressing, and bathing are some of my hardest tasks. So, unless I get really dirty, I only bathe once a week. (I must have a hearty microbiome. Haha.) It's that hard. I cannot shower; sitting on a shower chair or standing are hard on my back. Plus, my arm use is limited. Thus, a bath is easiest, but still hard. (I have really good handrails. Thank you, Norm.)  

I spend a lot of time alone, but I no longer have the depth of loneliness that I once had. In fact, I seldom get lonely anymore. Part of that is probably due to a deeper acceptance, acceptance of my condition(s) and my full-time job as a caregiver to myself. I divide up my self-care tasks through the week, but still have a difficult time getting them all done. I'm working on it.... 

I realized some years back that part of my loneliness with my condition is its rarity. People don't know what it is, understandably.  People know Parkinson's, MS, cancer, ALS, shingles, and other diseases. Sometimes I think I need to give Polly a face.

Every other month I receive a free neurological magazine Brain & Life. (It's the kind where you turn the pages with your fingers. Can you hear the crinkle?) In the most recent issue one of the features is with comedian Richard Lewis who has Parkinson's. I don't have Parkinson's, but some of my symptoms are similar. 

 "You know there are days when just showering and putting on pants and a shirt is a victory." ~Richard Lewis

Amen, Richard...

Your statement applies to me every day... 

Thus, every day I score a victory... 

Don't we all? 

****

Andy Grammer singing "Workin' on It." 
It might be taking forever but it's better than never....

Epigenetic Shift...

Okay Carol, just let the words pour. Or trickle. Or stream. Allow them to come through your body and out your fingertips.

What is it you want to convey? What is it you want to share? 

I think I think, I want to request support? Or do I? 

It's more like, I want to put my request out there to the Universe, Listeners, Source, Clouds and Trees and Wildlife and Humans and Ancestors and Progeny and Spirit. Does that cover it? Well no. There is a forever kind of life in the energy fields that exists. Once we discover one thing, there is more and more underneath that one thing. Stuff that can't be put into words but can be felt. 

Okay, quit deflecting. What is it that you want? You are next in line at the counter. 

I desire an epigenetic shift. About what? The possible (probable?) familial insomnia. 

*~*~

The story, part 1

Wednesday August 2nd, 2023, I lay in bed awake again for the 220+ish night-day in the past couple years. But this time, I am composing my suicide note in my head. 

I can't continue with the overwhelming loneliness, a kind of loneliness that consumes its prey. The wicked insomnia that has plagued me since May 2022, my practitioners and my self have thrown everything we know at the insomnia, seeking a remedy. My practitioners: Acupuncturists, Chiropractor/Homeopath/Nutritionist/Laser/ Mind-body Coach/Functional Medical Doctor, TCM Herbalist/Energy Healer/Grief Counselor, Massage Therapists, General Practitioner, and Neurologist. 

The insomnia. The widespread, chronic degenerative nerve disorder. The kyphoscoliosis. The pain. The weakness. The drugs. The herbs. The meditations. The prayers. The supplements. The 24/7 selfcare tasks. On and on and on and on...

What is the point of continuing? If I die, I'll rest from it all. Hubby will rest from it. 

I'd hit bottom again, but even a lower bottom than in the past. 

I call The Final Exit, just to see if I can talk with someone. I receive an answering service. 

"Are you with The Final Exit?" I ask.

"No. I'm with the answering service," responds the friendly voice on the other end.

"Does The Final Exit ever answer calls directly?"

"No. We take the phone number and pass it along and they will call you back."

"Oh." I'm silent for a moment. "Well, I don't want to do that." 

We cordially hang up. 

Hubby had gone to our family doctor for lab work that morning. I call his cell to see if he's still at the doctor's.

He answers, He is just at that moment checking out. 

"Can you ask if Dr. A has an opening today?" I ask.

"Sure," he responds. 

He asks the receptionist, and she asks what the visit is for.

I pick my words carefully; the "s" word can freak people out. I don't want police showing up at my house and wanting to cart me off and commit me somewhere against my will.

"Um...tell her that the insomnia is bad again and I'm in a lot of distress."  I figure Dr. A will be able to read between the lines and know what that means. 

They work me in for a 1:00 appointment that afternoon. Hubby is going to work from home (again) and accompany me to the 1:00 appointment. 

After Hubby and I hang up, I call the head sleep neurologist at the sleep clinic at Wake Forest Hospital. I'd been given her name by an acquaintance who is pediatric neurologist and knows some of my struggles. 

"Is Doctor S taking new patients?" 

"Yes, she is. But the first opening is March 6th. That's the first opening for her and the other sleep doctors." 

"March 6th?!? Like almost a year from now?" 

"Yes. If you'd caught me 5 minutes ago, I could've gotten you in this Friday." 

Holy shit, I think. This must be an epidemic. For a moment I send a prayer for all suffering with this crazy-making, maddening, severe insomnia.

My heart drops. Then I calm. Carol, if that is where you are to go, a door will open. For now, for some reason, you have to wait.

"Would you like me put you on a call list if there is a cancellation?" 

"Yes please," I respond. "And go ahead and schedule me for March 6th."

"Our sleep doctors in Wilkesboro or High Point might have openings. Do you want their phone numbers?"

"Yes please."

I'm able to get into the Wilkesboro clinic in October. But the doctor at that clinic is an ENT and works mainly with sleep apnea. Sleep apnea is not my problem. I make the appointment anyway. 

~*~

Later, 9/05/23

Hello any readers. :) 

I had the intention to finish this story in about four Parts. But, as is often the case, I won't get that far. This has happened a few times on toss & ripple -- an intention to finish a story in chronological parts, and then I don't follow through. I guess I'd suck at writing a chapter book. 

With this story, Parts Two through (possibly) Four would tell of the events that helped draw me up and out. How the "cat was out of the bag" with my kids as far as how deeply I've been suffering, partly (and mainly) brought on by the insomnia that began in May 2022.

Son flew in from Alaska and daughter came over from an hourish away. One thing Son, who is now 33, said was, "I inconvenienced y'all [Mom and Dad] for 25 years, please inconvenience me!" :D My kids came to my rescue, so to speak. We hugged and cried and danced together. And we have a plan moving forward. I am truly blessed. <3 

But what do I mean by "epigenetic shift." It's a term I made up after one of my siblings (whom I'll refer to as Jo) shared with me (about a week after the above incidents) that they too had the same type insomnia as I. It was uncanny as Jo shared their story; Jo was describing me. They had gone through 2 sleep studies to no avail. They finally figured out a way to get restful sleep every 3rd of 4th night. And at least one of our cousins has this same type insomnia. 

Last year I'd read about Fatal Familia Insomnia (FFI) but thought, no way. Yet a part of me wondered. FFI is a genetic disorder, and the afflicted usually die within two years of onset. Jo has been living with this type of insomnia for a couple decades, so whatever we have is apparently not FFI. But my GP and other practitioners were like, "Oh my. This is new light." Maybe one of my sleep doctor appointments (in October and/or March) will be able to look at this deeper. 

In the meantime, I'll just ride the waves. I am on some heavy-duty sleep pharmaceuticals and herbs, so I'm usually getting 4 hours at night now with a few more hours in a twilight sleep, aware but not fully awake. Interestingly, Jo is on the same meds with a similar response. But then Jo adds one more substance to help them sleep that third or fourth night. I cannot add that substance to my regimen due to how my body responds to it. 

The day after speaking with Jo, I thought, we need an epigenetic shift, followed by a chuckle, followed by, can that happen, if so, how? 

Cody and Petunia...

I've struggled with suicidal ideation off and on since the mid '90s. 

Seems it'd get easier over time, but then again not.

And it doesn't.

Most always something comes to my aid, often an animal encounter.

I share the following because of the 'miracle' story toward the end.

******

Monday, 7/17/23

Another rough day. 

Isolation. 

Pain. 

Brain fog. 

Grief. 

Feeling I live a "Groundhog Day" life. 

Tears poured. 

Grief & pain & the feeling of 'all alone.' 

Pondering again my suicide plan.

Through my sobs, I talk with Hubby who sits with me on the other end of the phone. We hang up, but I can't stop the spiral. So, I let it spin, feeling into it and hanging on. 

I make three phone calls to three different friends. 

Voicemails only, no answers. 

I do not leave any messages.

After a couple hours, I muster my body and mind to get outside. I don my wrists and back braces and get my trekking poles.

I walk to the end of the driveway. 

I look right. 

I look left. 

No cars. 

Houses sealed up tight. 

No life in sight. 

There were probably birds singing, but all I notice is the recently paved black top with its bright yellow lines. 

It's an odd feeling.

Like I'm the last person on earth.

I eventually head back up our driveway, walk through the backyard, through the woods at the end of our lot, and onto the dead-end street behind our lot. There's lots of shade and few cars.

Again, no humans. 

All houses closed up tight. 

People at work or inside their homes away from the sultry weather.

When I get to the dead-end part of the street, I stop to let an SUV pull into a driveway. Someone gets out of the passenger's side, but I can't see whom.

A moment later, as I wait, the vehicle pulls out of the driveway onto the street and drives away. The driver and I smile at one another, and nod.

I begin to walk again but am stopped after a couple steps. A young man, probably in his late 20s, is trotting up the driveway toward me.

As he approaches me, he calls, "I have something for you!"

So, I stop.

"I saw you and thought you might need a flower," as he stretches out his arm with a pink petunia in his hand.

I start to cry and tell him the perfect timing of his gift, without the details.

He shares a bit about the petunia story. "I grew them for my grandma. I live with her here and help take care of her. She has non-Hodgkins's lymphoma; it's in her bones."

We visit for about 15 minutes at the petunia plants.

His grandma, who is 81, is blessed to have such a loving grandson. His name is Cody.

Once back home, I put the petunia in some water in a bottle cap and place it on my kitchen windowsill altar.

Cody & I had never met before, though he had sometimes seen me walking. He commended me on how well I was walking...

*~*~

In my tears & pity party, a complete stranger reached out not knowing anything about me other than "the lady who walks with trekking poles... "

(Carol, do you believe yet?)

Traversing on Tuesday, Part One

Tuesday afternoon, 5/16/23. 

At the end of my appointment with Michele, I feel encouraged. I feel hope. I had entered the room in much despair. The recent dizziness and nausea on top of the insomnia and nerve damage, would lead anyone into despair...or, at the very least, into the temptation of despair. Something I regularly transverse [traverse].

(Interesting word, "transverse." To verse across? I think of conversation...to verse with. And poems or music...which have verses. What does it mean to verse? Ahh, just looked up the etymology of transverse: from trans "across" + vertere "to turn."  However, "transverse" means to lie across. So traverse is the proper word. But still "transverse" can apply too; I lie down often. And the word "traverse" comes from "transverse." 

Interesting because to traverse despair involves a turn...to turn into or away from. I think of getting off the "wheel of suffering" while in the midst of the suffering. Sometimes I find a path off. And sometimes it is just too fucking hard, and I have no option but to ride it out. Yet, riding it out can also be one way off the wheel of suffering...to roll with the wheel, hanging on for what seems to be life itself, until the wheel stops, at least temporarily. Life is a "long and winding (versing) road" to quote one of the Beatles. Sounds like it'd be a George Harrison line.)

As I approach Edward the Explorer who is awaiting me in the parking lot where Michele's office is, I ask my Self, What do I do now? How am I feeling? Do I walk somewhere? I think I feel strong enough to go for a walk? 

(I make no commitments these days outside of self-care, except for medical appointments which, of course, are a part of my self-care. I do not know from day to day how my health will be on any given day or hour. I thought earlier today as I am writing this piece (Friday, 5/19) that I literally live one day at a time.)

I decide to take the back way to Pilot Mountain, to the Knob. If nothing else, the drive should be pleasant. And it is; I am not disappointed. 

I park in one of the handicap spots in the summit parking lot. I hang my placard on the rearview mirror. It's a new handicap placard, good through April 2028. It's my second placard; my first one was good May 2018 through May 2023. So it's still good too, for another coupleish weeks. But I can only drive one car at a time. 

I get out my trekking poles and make my way to the bathroom. I have a short, pleasant exchange with a man sitting on a bench. 

Back at Edward, I pull out my hiking shoes and my cap. I don my cap, walk over to a short brick wall, sit down, unstrap my sandals, lace on my hiking shoes, check the grass behind me for bees or other little critters, and lay back on the grass to help relieve some of my lower back pain. I breathe in and out deeply, taking in the sky view. It's a beautiful day and probably 10 degrees cooler up here than below. 

I then make my way back to Edward, strap on my back brace and my hiking hip pack. I unplug my phone from the car charger, set it to airplane mode, tap on the app to measure how far I trek, and zip the phone into my hip pack. I click lock twice on Eward's fob. Edward beeps indicating he is locked and alarmed. I hide the key in its hiding place inside Edward and shut the door. Edward has a keypad to unlock him; one of Edward's many features that I enjoy. 

As I walk up the sidewalk, I am deeply refreshed by the cool breezes. My back brace and wrist braces can get quite toasty in the warm/hot weather. The breezes feel so delightful. My olfactories delight in the aromas of earth and plants. I recall the days for some 15+ years when I couldn't smell. In this moment, I do not take for granted that sense.

I make it up the short walk of stairs and rocks to Little Pinnacle summit where one gets a clear, closeup view of Pilot Knob and any raptors circling the Knob. I look down below at Jomeokee Trail which winds its way to Pilot Knob and encircles the base of the Knob. Jomeokee means "great guide," 

Boy, I'd sure like to be able to hike that trail again. I wonder how many years it's been?

I carefully make my way down Little Pinnacle back to the sidewalk. I turn right and walk a short distance. I stop at the trailhead for Jomeokee and look at it, pondering. 

It's a lot of stairs, And there's that one spot, the little boulder without steps. Hmmm....  Well, I can always start down and turn around if I feel it's too much.

So, off I go.

At the section where there are a lot of stairs I think about rain and how it wets the stairs and that I would not attempt this if the stairs were wet. 

Along comes a hiker going the same direction as I. A young man, probably in his late 20s or early 30s. We strike up a pleasant conversation and he walks beside me down all the stairs. I am very slow. That he would take the time to walk with me...well...it makes me feel good. In our conversation, I pick up his outlook on life. It's positive. Hopeful. But not Pollyanna, not in an unrealistic way. He kind of reminds me of my own two adult children. 

We reach the bottom of the stairs and exchange farewells. I thank him for accompanying me down the stone stairs.

Partial view from Little Pinnacle summit

Raptor Plaque on Little Pinnacle

View of Pilot Knob from Little Pinnacle

Stairs at the trailhead of Jomeokee Trail

If I were to write an update, of sorts...

If I were to write an update, of sorts, about where I now function/exist/await regarding my health, what would I share? 

Life is really hard.

I have plateaued. 

Is this where I will stay? 

Will there be more movement?

There is always movement, either toward improvement or toward death.

The movement-toward-death is inevitable for all living creatures, unless there is a Christian Rapture or Hope at which time humans who are alive at the event will be given new bodies and will meet the Lord in the air. [I capitalize "rapture" and "hope" to delineate the event from the typical usage of those words.]

(My meandering thoughts at this moment, are they a type of avoidance as I endeavor to put into words my current, complex, often-overwhelming health status?)

Perhaps it'd be easier for me (but not necessarily any readers) to approximate a number on a scale. The premise for my scale is "Week 12" of my previous epidural cycle. Because I haven't received an epidural since 4/14/22, I live in a continuous Week 12 now. 

I used to receive epidurals every 12 weeks. With every cycle the final week was always the worst. It got so bad over the years that it is hard to describe the physical, mental, and emotional symptoms. Indescribable physical weakness, brain mud, despair. Laced within those are the overwhelming fatigue (physical, mental, emotional and neurological) and a widespread low-level pain through all my limbs, extremities, and back. Not to mention dizziness, mini-migraines, tummy-yuck, and whatever-else.

So, on a scale of 0 to 12, with 12 being the worst, I hover these days (mostly) around an 8 or 9 and maybe an occasional 7 or 10.  Which is far from "well" but, considering the circumstances, is notable. One of those circumstances is chronic insomnia for a year, most weeks getting around 20 to 25 hours of sleep. That is not calculated with a device, but rather my own record-keeping. So I may be getting a few hours more, but not many and not deep sleep. That I can function as well as I do, is also notable. 

So in comparing (as well as I can; some objective, some subjective) with my previous Week 12s:

My symptoms are a bit different; it's like they are more concrete and less diffuse.

I have described my current pain as being harder, starker than previously...like a 'hard' leafless tree in winter instead of a 'soft' leafy tree in summer. It's not necessarily "worse" or "better," but different. 

The weakness through my limbs is not as bad; I can now (very slowly) lift my right arm using my bicep, whereas it would otherwise be non-liftable. It takes extra effort to lift it, and I can't move it quickly. I can't move any of my body quickly; shooting pain and lameness will let me know immediately if I have done so.

My brain is sometimes almost a blank-feeling, like a fuzzy, black nothing, like my brain cells are dying, like they have nothing to grasp. But that is due more to insomnia than polyradiculitis-fatigue. The insomnia invokes feelings of madness and could drive one mad if allowed to do so, or if going too long without a reprieve. 

Emotionally, anxiety has been out the roof at times. A type of paranoia not of a person or entity being after me, but rather a threat awaiting me. This extreme anxiety stems from the insomnia, not that other life circumstances and patterns are not involved. In the past month, I have had seven consecutive nights of around 4 hours of deep sleep. During those times, the anxiety was greatly reduced. Thus, I surmise that the insomnia is a (the) major trigger for the extreme anxiety. (I'm trying a new sleep medication which takes weeks to start working, so maybe it is starting to work...but the verdict is not yet known. Right now, "getting Carol to sleep" is the focused priority.)

That's all I have in me now, as far as trying to share about symptom comparisons. Bottom line is that I seem to stay around 8 or 9 on the scale. Not as bad as 12, but still...exhausting and limiting. 

I had to give up trying to ride my bike outside. I did get in 3 good rides this year, in March and April, but had to stop. (My last ride prior to March 2023 was July 30, 2022.) The rides didn't bring symptom-relief, and they exhausted an already-exhausted me. Plus, they didn't help my sleep but rather seemed to have an opposite effect. I am able to ride my indoor bike, usually 3 to 4 days a week for 20 to 30 minutes each time; often temporary relief follows. 

I endeavor to walk outside each day, somewhere between .25 and 1.1 miles depending on how I'm doing. I have to use my trekking poles when walking outside the home. I wear my back brace and wrist braces inside and outside. I'm thankful I'm still mobile.

That's all I have in me now, as far as trying to describe a couple things I do to keep my body working. 

Nature is still one of my main helps. And music. 

And nature. And guided meditations. (Thank you Insight Timer. That's a plug.) 

And music. And tonglen practice/prayer. 

And nature. And good relationships with my wellness team. 

And music. And the loving aid from my spouse. 

And nature. And writing my shorts. 

And music. And reading stories of real people overcoming, or at the very least making the best of, debilitating circumstances within webs of complexity. 

And too many to lists...

Did I mention nature? :)

Chippy & Squirrel, lunch buddies

Reynolda Gardens, April 2023

Pond along Reynold Trails, March 2023

And music? Especially Franti... :)

A Short Hello....

 Hello toss & ripple and any readers...

Obviously, I've not been blogging. Well, barely blogging. I did write and post one blog entry on 12/15/22. But I deleted it the same day or the next. I couldn't do justice to what I wanted to share, which was about the unexpected death of my previous acupuncturist who died the end of June 2022. There were so many serendipities around that death that continued for months, and still come up. These happenings cause me deep pause and remind me that there must be a creator and maybe even one who cares for us. If we can slow down enough to listen, to see, to taste, to hear, to feel, to discover the silver linings... 

Today's post is about a project which I may actually keep up with. Read on to discover the project...

Due to added ongoing health adversities since May 2022, journaling/writing, drawing/coloring slowly took a "back seat" in my life; not to mention an abundance of other activities. As far as personal writing, I have mainly charted symptoms and different modalities I experiment with to find what helps my symptoms and what doesn't; an arduous task. 

Beginning January 2023, I began journaling what I came to call "Shorts." The idea came from this article, Opinion: How 17 syllables a day can change your life by Tess Taylor. In the second paragraph Tess states: 

...I wanted to share a practice that’s been useful to me, as a writer: To write a haiku, or a loose haiku, every day. For me this habit began in a dark phase, when I realized I just wasn’t getting much creative time. I was feeling depleted....

Well, that pretty closely described me, and still does: depleted, dark phase, lack of creative energy [time].  So, I gave the "loose haiku" a whirl. I started out with 15 to 19 syllables which then evolved into anywhere between 10ish to 29ish syllables. The loose haiku got really loose. 

In the past month or so, I started calling them "Shorts." I could call them "Briefs," but they cover more than "Briefs." [I guess then, "Nudes" would look like this:               . (haha)]

My "Shorts" have become a type of simple journaling for me. But I can't write them every day. 

Last night I read many of them to Hubby. He said something like, "Wow. The suffering really comes through. But I witness the suffering every day, so to me they are very poignant. A lot of those are publish-worthy." 

I responded, "Does hope come through too? Glimpses of joy?"  He responded in the affirmative. 

So, I'm gonna publish some/most/all. Many (most?) are not cheerful. All are simple; one can't get too analytical in 10 to 29 syllables. Some come from inner visualizations, of which I have a-plenty. If I knew how and had the energy and inclination, I could maybe put together some decent and colorful animations from my visualizations. 

My plan is to post them in the order I wrote them and entitle them accordingly, ie: Shorts: January 2023 and continue chronologically. Time will tell if I stick with the plan. :)    

I am posting the "Short Series" on my poetry blog, Parchment Anthology. 

 

I dedicate them to all who suffer in silence...

Which isn't silent at all...

The torment is a far scream from quiet...

You are heard...

      You are not alone...

    We are not alone...

A joy unspeakable...

While we and our loved ones still draw breath, may we remember to let them know how cherished they are.

From a 31-year-old son to his 63-year-old mom...

A text message on May 6, 2022, from Dillingham, AK, to Somewhere, NC...

Shared with permission...

~*~*~

5/06/22

I don’t have any profound words of wisdom or divine revelations. I just know that as your loving son I am compelled to share my love and support with you, Mother.

I’m not sure you realize the joy and passion for life that you have imparted to me. Two nights ago, I drank entirely too much vodka with my friends and stumbled home through the rain to my office. I proceeded to turn on my Bluetooth speaker as loudly as possible and dance my heart out for the better part of an hour. Looking back on that moment, I realize that was your spirit pumping through my veins and expressing itself through my pair of left feet.

It is your spirit that propelled me to the Himalayas, the arctic, and to the far reaches of and into civilization.

It’s your spirit that leads me through the rigors of the intellectual exercises that lend me the peace of knowing what I know, and knowing what I don’t know.

It is your spirit that leads me to tears at the witnessing of the simplest beauties in life and in word.

I know you have suffered far beyond what one ought in this life. That fact breaks my heart. But know that your life and spirit has led to manifold joys whose impacts are still becoming known. Your love and your zest for life will carry on far beyond the length of your life or mine. And only God knows how wide the impact will be.

Know that your joy, your sadness, your triumphs, and your failures have meaning. Not only now, but throughout time. You are loved. You are known. You are my mother. From ear candles to hikes, to uncomfortable political discussions. You are my one and only Mother.

May God bless you.

With all the love a son can muster,

-Son

~*~*~

Son and I had spoken via phone, late afternoon, May 5th.

He asked how I was doing.

(I had been released from the hospital on May 1st after an unexpected 3-night stay for two good-sized blood clots, one in each lung.)

I responded "I'm doing okay. But I think I'm going to cry."

He responded, "It's alright Mom and completely understandable."

The next morning, I awoke to the text message shared above...

Tears rolled...

Feelings of gratitude, humility, that I'd done something right in my life, joy, and so much more....