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?