Try again? "Hello out there..."

This past Sunday, I rolled down my window and gave a shout out.
(Meaning, I published a blog post on toss & ripple.)

I wanted the whole world to hear, so I allowed GPS satellites to find me.
(Meaning, I enabled search engines on toss & ripple.)

And then, within fiveish minutes, I rolled up that window real quick-like and locked the door.
(Meaning, the post went into draft and I disabled search engines.)

On Monday, I asked myself, "What was that all about? Why did you de-post?"
"I'm not yet ready to come out and play," was the answer.
"Well, just because you post a blog piece does not obligate you to 'come out and play.'"

Ha! ;)

Below is a longer rendition of what I posted Sunday.

***
September 27, 2015

It's been over four months since I've published a blog piece.

I have thought about blogging.

I have thought about a lot of things.

"So Carol, what word could describe your Summer, 2015?"

Answer: "Dynamic."

Yes; dynamic and, actually, quite incredible.

Maybe...just maybe...this has been the best summer I've lived since the onset of nerve damage in Spring, 2011.

Between July 5 and September 9, 2015,  I bicycled around 420 miles. That's approximate because I didn't have the app yet on my phone to measure my mileage. (I had previously estimated 460, but after measuring with the app now on my phone, I think it was closer to 420.)

Four hundred miles in a 2-1/4-month time frame is not much for a cyclist.

But, it's quite a feat for an amateur cyclist with nerve damage in all her limbs. 

So how'd I end up being able to ride that far? 

On June 10, I began taking the Stanley Brothers Charlotte's Web hemp oil (CWHO). That subject deserves its own blog post...someday, maybe. Suffice it to say, the CWHO has been like a linchpin that has catalyzed, what feels like, my body under reconstruction.

Since five days after started the oil, the incredible overwhelming heaviness in my limbs began to lighten a bit. (And it has continued in that direction.  And now... that dark, deep hole is ... GONE!!!  That heaviness has been my worst symptom; it's panic inducing and indescribably horrible. And every 12-week cycle, I knew the heaviness would befall me around week 10; the dread would be overwhelming. I still have some heaviness, but not the earth-sucking nightmare.)

Then on June 29, I received my routine, regularly scheduled, 12-week lumbar steroid epidural and cervical-neck steroid shots.

My body's response to the 6/29-injections was like never before...
By July 5 I was riding my bike approximately 12 miles a day. I kept that up for 20 days in a row! I began to feel my leg muscles working; they were getting juice. I cannot describe the elation. The closest I can come is that it was like my limbs were having orgasms. And maybe they were!

After those 20 days, due to the injection-effects beginning to diminish (which is normal),  I had to cut back to around 6 miles a day. During the second week of September, I had to stop cycling.

And, there's the recent blood work results...

In latter July, my blood work showed an abnormality; my vitamin B6 levels are toxic, which can cause nerve damage. So I have reduced my intake of seeds and nuts and fish, as much as reasonably possible. And I quit drinking a food supplement which was providing 5 mg/day of added pyridoxine (supplemental B6). I'd been drinking that supplement for over a decade. 

And, there's my yearly test results...

In August, I received my yearly electromyography (EMG) and nerve conduction study (NCS) tests.  

As my neurologist read the computer monitor while needling me during the tests as my arms and legs jerked around in response, he slowly said, "Well, you've not progressed." 

Then he paused. 
Then he said, "Your improving..." 
Then he enthusiastically followed that with, "Just keep doing what your doing!" 
And I will! 

In 2013, I began receiving EMG & NCS tests, but my at-the-time-previously-undiagnosed-nerve-damage had begun in 2011.

In 2014, my EMG and NCS results showed that my condition was worsening, which was obvious by my worsening symptoms.

In August, 2015, my EMG and NCS results show I am not yet back to where I was in 2013, which still wasn't good. But I'm headed in that direction and maybe on my way out of the woods-of-horror. (Woods-of-horror is not an exaggeration.)

And, then came my next round of injections...
On September 21, around 4:30 PM, I received my routine, regularly scheduled, 12-week lumbar steroid epidural and cervical-neck steroid shots.

On September 22 around lunchtime, I began vomiting. By 5:30 I was at the emergency room. We finally got the vomit-fest under control. I got home after midnight and vomited a couple more times, the last being at 4:00 AM. Then I slept until noon on September 23 and woke up like the vomit-fest never happened, except that I'd lost 6 pounds.  I'm hoping the vomit-fest means that I really am getting well and the medicine in the injections is now too strong. I see the neurologist again next week.

(I typically lose 2 to 4 pounds when I get my injections. Of those, I gain back most or all as the next round of injections approaches. That said, I've lost over 25 pounds this past year due to muscle loss and due to appetite suppression. Appetite suppression is another symptom of B6 toxicity. It is also a side effect of one of my medications, generic Plaquenil, which I began taking early January, 2015.)

And in the midst of all that, there is the physical and occupational therapy story and my improved strength test results. That too deserves its own blog post...someday, maybe.

I want to believe this is really real, and I hope it is. 

I hope it is. 

I hope it is.

I'm ready to get back to biking, but we are in the midst of a week-long stretch of rain.

I haven't set a mileage cycling goal for this 12 weeks, but I'm thinking maybe 800 miles? Maybe? (I later changed that from 800 to 600.)

Until then...
"I will dance in the rain and let my dreams know I haven't forgotten them..."

Hello out there!

xoxo

***
One more thing. My son hitchhiked and backpacked Iceland for 52 days this summer. Oh my the stories!

Dudes in Iceland. Son is 2nd from left.

Trekking pole selfie-stick. Son is far left, front.

A glacier in the Highlands. Son is far right.

"And they didn't have a cell phone..."

A few days ago after I finished reading the book Grandma Gatewood's Walk, I perused my bookshelves for my next trail book.

I found A Walk in the Woods, Appalachian Trail Thru-hikers' Companion 2012 (Thru-hiker Companions are published each year), and The Appalachian Trail.

I pulled the third one from its shelf.
~~~

The book is hardbound with a slightly-tattered book cover with a photograph of two backpackers hiking along the trail. A woman in front and a man in the distance.

Below the photo two separate names and an organization are listed. In all caps. In small print.

BY RONALD M. FISHER
PHOTOGRAPHED BY DICK DURRANCE II
NATIONAL GEOGRAPHIC SOCIETY

I open the book and flip the slightly-yellowed pages with my left thumb. The pages are sprinkled with slightly-yellowed photographs.

This looks like fun.

Didn't Denise give me this book? I think she did.

I ponder.

This is the book! I thought she'd given me Grandma Gatewood. I'll have to let her know.

I chuckle.

I read the front inside flap of the book cover. It identifies the names of the two backpackers, Jill Durrance and Ron Fisher.

I flip through the first few pages and land on the Copyright page.

1972. Hm. Intriguing.

I read a paragraph captured under an elderly man's photograph.

The photograph is of then-93-year-old Benton MacKaye who is attributed as the founder of the Appalachian Trail.

The paragraph contains a quote by MacKaye, "The ultimate purpose of the Appalachian Trail? To walk. To see. And to see what you see."

I like that. Being present.

I smile.

The Foreward is written by MacKaye.

The book is a firsthand account of the journey of three backpackers along the trail; the author, the photographer, and the photographer's wife.
~~~

Today, I began reading the chapters.

In the Prologue as I read the author's overview of their journey, at the end of a one-sentence paragraph that follows a longer paragraph relaying snippets about Tennessee and Virginia and West Virginia and Pennsylvania and New Hampshire and Maine and that the trio passed through 14 states and 8 national forests and 2 national parks and several state preserves...

At the end of that descriptive paragraph, sits that one-sentence paragraph:
"In six months we sampled a long, thin strip of America."

I read the sentence and added, And they didn't have a cell phone.

My added words almost appeared on the slightly-yellowed page before my eyes.

The words did appear on the page in my mind.

And they didn't have a cell phone.

Ironically, my iPhone 5 got stuck on "Searching..." last Thursday in the wee morning hours. I spent through the following Monday morning endeavoring to fix it. Internet searches. A local AT&T store. The local Apple Store. Two different Apple technicians via phone. All were very helpful and I learned a lot. But it appears that that iPhone 5 will be forever "Searching..."

"Forever searching." Reminds me of X-Files.

Lucky for me, I found my old iPhone 4. It is now resurrected. My only monetary cost was $15 for a new power cord.

Trails and trials

Occupational Therapy was great today.

I have someone rooting for me...in the present; face to face; hand to hand.

I feel hopeful...today. Hopeful is good, even if it may be false hope. Hope helps me to continue to put one foot in front of the other.

My full-time job is self-care and to keep my limbs working and maybe even to get some muscle tone back. But, if that isn't possible at this point, perhaps I can forego more atrophy.

I cannot hike the Appalachian Trail in my current condition. But if I could, my full-time job would be to put one foot in front of the other. My current journey is not a trail through physical woods; it is a trail through physical trials. Any trial is more than physical.

Soul trials. Soul trails.

Every trail has its trials - lonely, arduous, taxing miles. Every trail has its triumphs - sun ray kisses, zephyr whispers, wildflower scents, aroma of cedar, discovering one's self.

I can draw on trail memories I have forged and apply them to my current trial.

Will this current trial ever end?

"End." What an odd thought. Perhaps it will never end until my last breath. And damn it, I'll die trying. ("You damn straight!" says my self to my self.)

This morning I opened and read an email that in its signature stated:
“You are not a drop in the ocean. You are the entire ocean, in a drop. ~Rumi”

Later this morning I continued my reading of the book Grandma Gatewood's Walk.

In 1968 when Grandma Emma Gatewood was around 81 years old her ex-husband, P.C. Gatewood, was on his death bed. P.C. physically beat Emma for decades. She divorced him in 1941, after 35 years of abuse. This morning I read on page number 244:

"According to [P.C. and Emma's son] Nelson, [P.C.] made one dying request in his final days. He wanted to see Emma. He wanted her to come stand in his doorway just for a moment.

The woman who had walked more that ten thousand miles since she left him refused to take those steps."

Upon reading that last sentence I enthusiastically hooted, Good on you Grandma!! Go Emma!!
And then, I pondered.....