Self Talkin'

12/28/15

Alright.
Here I am.

Two weeks post-epidural and I feel more like it is Week Five post-epidural.
Not good.

But, but, but....think of what I can do now that I couldn't do before.
And, I am only on 1.5 mg of daily prednisone with a 50% reduction in medication in my epidural.
No small feat.

Bring to mind Carol, riding Salem Lake.
You just rode it Sunday-a-week-ago.
Remember?

And then there has been Christmas.
Yuck.
Just yuck.
It wore me out.
And receiving gifts is hard on me.
The reciprocal-response runs strong in this one, Obi.

Social events and conversation wear me out.
Usually I'm okay with being social the first 4ish weeks after my epidural, but not this time.

My energy is just so very low.
I have little-to-no reserve.

So, each and every decision must be made in light of "will this help me? or drain me?"

Whatever I do expends energy; that's a given.
But, with every expenditure, there is either a benefit or detriment.
It can be either an investment or a life-sucker.

I can't afford the suckers.

I don't need to explain that to anyone.

And remember to bring to mind images of what energizes me...like riding my bike.
It will come again; it will come again.
I might not get that energy until my next epidural.

But what would be great?
If my body got to the next level of healing.
There will be levels, with ups and downs.

OTOH, I might be as well as I'm gonna get.
I've got to accept that.

Yup...I must accept that as a possible reality.
And if it is, so long social life.

That's what seems to exhaust me the most, social interactions.
Maybe they wouldn't if I didn't have a small business to run.

Secret Fear

Mid-August, 2014
That's when the dizziness started.  It lasted for about six weeks at which time I received my next epidural. The dizziness has been gone ever since.


September, 2014
That's when the swallow-change began. My esophagus felt smaller, and slower. Before that, I could swallow a handful of pills with no problem.

That was the first thing I noticed; pills were harder to down. Then I began having to chew my food more thoroughly and swallow less at a time. Not a bad habit to get into. I even had to adjust how I swallow liquids.

The symptom eased up after maybe four (?) months. Or maybe I just got used to it as my new-normal. My esophagus has never felt old-normal again. I still have to eat and swallow more slowly than before, and I have to swallow a smaller amount at a time.


October, 2014
That is the first time I peed in my bed in my sleep. It happened twice, about six weeks apart.

I pet-sit overnight in clients' homes; it is my main source of personal income.

What if I pee in their beds? 

No. No. No.

For about six months I packed pee pads and towels and would have to put them on clients' beds when I had overnight jobs. Making a bed in any manner wasn't easy for me with my hand and arm disability. Thank the pee-gods, I have never peed in any other bed than my own. Knock on wood.

Did I fear ALS at that point?

No. Though it was a passing wonder from time to time.

I did fear that the peripheral neuropathy might be spreading to my autonomic functions, an understandable fear and real concern.

I haven't peed in my bed again since November, 2014.

Thankfully, of these symptoms  (if they were symptoms, which I think they were) that developed beginning mid-August, 2014, the only one I still have is the swallow-change. I should come up with a better way to state that, "swallow-change." Maybe I will.


Early, 2015
As I continued researching my symptoms and condition and how to help myself, that's when I continually began to land on the ALS forums and sites.

But if I have ALS, someone would know by now, right? 
If I have ALS, my organs would already have begun to fail, right? 
If I have ALS, steroids wouldn't work, right? 
If I have ALS, any autoimmune drugs wouldn't work, right?

This is my secret, that I get afraid that I might have ALS. I can't say it out loud. Perhaps I'm in a type of denial. I don't want to know if I might have ALS, not yet anyway. What if insurance took away my epidurals? Plus, people might think I'm exaggerating or playing the victim. I can't reveal this fear; I'm too vulnerable right now. I can't afford putting energy into what others might say and how they might judge me. Besides, my doctor would tell me if he thought I had ALS, wouldn't he? 


Spring, 2015
Exercises. I have to figure out what I can do.

Again, I landed on the ALS forums.

But, but, but ... steroids don't help ALS and it's not autoimmune. Right? 
But what about the weight loss; I just keep dropping pounds. Who loses weight on prednisone? 
Most of the time I have to make myself eat. I don't have an appetite and it's not because of depression. I just don't want to eat. Maybe it's the Plaquenil. But, I noticed the weight loss back in August, before I started Plaquenil.

Just concentrate on the exercises Carol. Regardless if you have ALS or not, your muscles are atrophying and your limbs are heavy and the fatigue can get unbearable. You need to figure out what you can do to keep your limbs working. 

You have to keep your limbs working. 
Right now, that's all that matters. 

It was terrifying.
But I would talk myself through.
I couldn't dwell on that fear.
I just couldn't.


Summer, 2015
I opened a letter from the neurologist informing me that my B6 levels are toxic, three times higher than the normal high, and to go off any B6 supplements.

But I don't take B6 supplements. 

I was bewildered.

Again I hit the internet. Again I landed on the ALS sites.

Shit. Here I am, AGAIN. 

I read and discover other folks who have B6 toxicity and don't take B6 supplements. Most, if not all, of them have ALS diagnoses.

At least I know I'm not alone and that I'm not crazy. 
And the good news is, from what I've read, B6 toxicity can mimic ALS. 
That's 'good' news? In the context, yes.
It can even cause loss of appetite.

Then I came across a heated discussion thread that had been closed to comments. The discussion was about folks who had been diagnosed with ALS who had received relief with corticosteroid treatment, and that steroid injections, as opposed to oral, were especially helpful.

They are describing me and my response to steroids and especially epidurals.
But I don't have ALS. 
I don't have ALS.
I don't have ALS.

I followed the link trail and discovered one of the folks making that claim is an elderly medical doctor who lives in the same city I live in. He was diagnosed with ALS in the 1960s, and after doing some research decided to try treating himself with prednisone. It worked. He's in his 80s now. He admits that perhaps he had an incorrect diagnosis, but he doesn't think that is the case. And there are other ALS patients who have had similar or same results with steroid treatment.

But I don't have ALS, so I am not going to contact this guy who probably isn't practicing now anyway. Besides, I am being treated with steroids. If, if, if my diagnosis were changed to ALS, insurance might not cover my steroid injections because steroids are not used to treat ALS. 

As I read more on ALS, I learned that some researchers are questioning that ALS might be autoimmune, even though current research concludes that ALS is not autoimmune.

Doc thinks my disease is autoimmune, even though my blood tests for autoimmune are negative. When I asked Doc regarding my autoimmune lab results showing that I don't have autoimmune, he responded something like, "Just because the test is negative, doesn't mean you don't have autoimmune. And because you respond well to steroids, which is an immunosuppressant, I feel sure your condition is autoimmune."

I like that. That he took into account me as a person along with the lab work. And I do believe he is correct in his assessment.

After I responded so well to the Charlotte's Web Hemp Extract therapy which I began on June 10, 2015, I searched the web on ALS and cannabis. As I read one guy's ALS story, he sounded just like me. At least his arms and hands sounded like mine. After using cannabis oil, he was able to lift his arms! Oh joy do I know that feeling! He did not use the Charlotte's Web strain; but rather, made his own oil, with help from friends because he couldn't do the physical work due to the disability in his arms and hands. I totally got it, and tears streamed down my cheeks as I read his story. They are trickling at this moment as I type this.

In my July ALS reading, I also discovered that polyradiculitis can mimic ALS. I hadn't read that prior to Summer, 2015. More "good news," at least in the context. Polyradiculitis is my current diagnosis.



Now, 2015
So, my silent and private fear about possibly having ALS has been eased.
At some point in 2015, I did share with Hubby about my fears and we had a few ALS talks.
So I did share it with someone; it wasn't totally secret.

What if my diagnosis of lumbar & cervical radiculopathy is changed?
Well, I really don't think that will happen, so I'm not even going there in my head.
And, I am starting to improve.
I keep reminding myself of the progress I've made since the end of June, 2015.
I'm doing all I can to help myself, and I'll just keep going.
I have real hope now of more improvement as I stay the course.

Most of the time, my outlook is positive and grateful.
Simultaneously, I am usually in hunker-down mode.
And, I get weary.
And depressed.
Of course.
Anyone would.

I may not get back to where I'm fully functional.
But if I can just get to the point where I need less or no epidurals, that will be another huge step.
And I have real hope now that it can happen.

The word "step" makes me smile; it indicates that I'll keep walking. ;)

Music is one of my main motivators and therapies.
Over the past couple(?) years, I've gravitated toward songs that refer to weight and heaviness.
One of my theme songs in the past year has been Carry On by Fun.
For me, the feeling of "sinking like a stone" has been a literal, physical reality.
Thankfully, that severe, earth-sucking heaviness has disappeared since I added Charlotte's Web to my regimen. It will probably take me another six months, which is two epidural cycles, without that heaviness to really believe it has evaporated. Ha! :D

I change one word in the chorus of this song: "past" to "path."
I want the "sound of my feet upon the ground" to be a present reality, not a past one.
I prefer a path in the woods, like that long one from Georgia to Maine. :)

"~ my legs are fine; after all they are mine ~"

Nerve-Damage Timeline Update: 11/10/15 - 12/23/15

On November 10, 2015, I posted a timeline of events since the onset of nerve damage in 2011.
Below, in bullet format, is an update to that timeline.
To read the full timeline, click here: Timeline since 2011 and the onset of nerve damage...

~~~

Timeline update: 11/10/15 - 12/23/15

• On November 24, 2015, the nerve damage moved into my lower back and up my spine on both sides. It spread upward for about two weeks, stopping below my shoulder blades. I have not had shooting pain; but rather, lots of weakness and strain-type pains.

• Around that same time (the week of November 23, 2015), which was post-epidural-week number nine, my overall symptoms worsened which is the normal pattern between epidurals. I was hoping that this routine pattern might not happen this round and that I would be able to at least delay the December 14th epidural. I was quite depressed with the increase of symptoms confirming that I would need that epidural. But, even with the increased symptoms, comparatively speaking, I guesstimate that I was still around 25% better compared to post-week nine in June, 2015, and probably 10% better compared to post-week nine in September, 2015. If not for the nerve damage spreading to my neck and back in October and November, 2015, I would have estimated that I was 40% better compared to June, 2015.

• On December 10, 2015, my six-month Charlotte's Web™ Hemp Extract experiment which I began on June 10, 2015, was over. The improvement has been significant. So I will continue taking Charlotte's Web™ and assessing.

• On December 14, 2015, I received my routine 12-week epidural. Due to my improvement since adding Charlotte's Web™ (CW) to my regimen and because my last epidural on 9/21/15 made me sick, my neurologist reduced the medication in my epidural by 50%. (That is HUGE!) Around March, 2015, I had asked the neurologist if we could increase the amount of medication in my epidural to maybe give me more and/or longer relief. He responded, "No. You are as high as you can go." And now, at the end of my six-month CW hemp extract experiment, that same medication which I had previously asked about increasing was decreased by 50%. It really is a big deal. December 14, 2015, was my 10th epidural since January, 2014.

• How am I faring on the 50% reduction? I estimate that I'm receiving around 70% to 80% of the relief that I normally have by this time after my epidural. Not bad, since I had a 50% reduction in medication. I do miss the larger relief, and the comparative 70/80% relief has caused me some discouragement and depression. But, I'm handling that and adjusting and getting 'back on my game.' It will be interesting to see how I fare as the effects of this epidural wear off.

• My next neurology appointment is on Monday, January 25, to get shots in my neck if I need them. My next epidural will probably be on Monday, March 7, 2016. 

~~~

Yesterday, 12/22/15, was a rough day, especially with my back weakness which is effecting my legs. 

I may write more about that later. 

I'm doing better today, 12/23/15.
I just have to keep working with my head.
Stay focused and grateful.

Listen to my music.

And remember to look up....

Looking up. Lochraven Drive. 12/22/15.

I could write about that....

~~~
What to write.
What to write.

So much happens in a day, a week, a moment.
Happenstances I say that I'll write about.
But then I don't.
~~~

The Martian therapy
That space suit; that's how I move.
Those space gloves; those are my hands.
The Mars rover on that red dirt; that's my bike Olivia riding the red dirt at Salem Lake.
Red rocks of Mars; like Sedona and especially that one hike near Red Rock Crossing.
The disco music; my theme music this past summer as my limbs, especially my legs, came back to life.
Watney with a victory shout or jump with no witnesses but Mars; trees and animals have been my witnesses in the moments I've felt life in my limbs again, as I've shouted or wooped or pumped a fist in the air with tears streaming down my cheeks and the trees clapping their hands cheering me on.
Watney's calendar as he marks off the days; like my "calendar" that I put together every 12 weeks and tape onto my fridge and check off as each week passes.
That's just a few parallels, for me, of living this bizarre lifestyle of 12-week cycles, over and over and over again, the goal being to keep my limbs working 'til the next 12-week round.
That's how life is for everyone, "over and over and over."
The Martian encouraged me through my anxiety about my December 14th epidural.
My doctors got some good laughs as I shared about my Martian therapy this past round.

I could write about that.
I guess I just did.


Doctor visits
My yearly physical in December went well.
Blood sugar is back down from last year; that is a continual prednisone side-effect concern.
Heart is good; another prednisone side-effect concern.
I've lost over 30 pounds in a year which is probably the only symptom that I don't mind - loss of appetite.
Neurologist reduced my epidural medicine by 50% on December 14!
50%!!!
That's HUGE! HUGE!
Beginning in early 2015, I've been on the highest dose that I could receive; we couldn't go any higher.
And now, at the end of my six-month Charlotte's Web Hemp Extract experiment, which I will continue, Doc reduces my medicine by 50%!?!
Amazing. Almost unbelievable.
I'll monitor again how I do this 12-week round.
It's kind of scary; I am still afraid to really believe I'm getting well.
But all evidence indicates that I am.
My December 14, 2015, epidural was my 10th epidural; I began receiving them in January, 2014.

I could write about that.
And I just did.
And I will write more about that later.


Greenwayers and cycling
The people I've met the past sixish weeks while adventuring at Muddy Creek Greenway.
Aaron, the man whose friend's teenage son is now a quadriplegic due to an accident a couple months ago; his spinal cord is not severed, but severely damaged at C4.
I shared with Aaron about Rising Tide.
Harold, the elderly man who now lives with chemo-induced peripheral neuropathy in both legs, who rides his scooter and reminds me of Dad, with his black beret and love of outdoors.
He's a Korean War veteran and cares for his elderly wife, who has Parkinson's, at home,
Harold had to jump through the required (and too-often unnecessary) medical hoops to prove he really did need his scooter, his wheels to freedom.
Alan, the man who says (like me) that his bike has saved his life.
He lives with some sort of adult polio and can only walk a mile (or two maximum) at a time before his legs wear out. But on his bike, he can ride miles and miles and miles.
I rode 501.2 miles this past 12-weeks, between 9/22/15 and 12/13/15.
I rode 16.5 miles this past Wednesday, 12/16/15, on and near the Blue Ridge Parkway, only two days after my epidural. Another first for me.
I've not yet set a cycling goal for this next 12 weeks.

I could write more about that.
And I probably will.


The holidays
And how this is the first year I don't feel a lot of holiday pressure.
It is my fifth Christmas living with this disability, the fourth of no Christmas decorations.
I have finally accepted my limits without feeling a lot of pressure, and/or guilt.
But I still feel some pressure and/or guilt.
I cannot cook.
I cannot clean my house.
I cannot decorate.
I cannot wrap presents.
So there is no Christmas tree, no decorations, no wrapped gifts.
I cannot do what I cannot do.
It's like asking a blind person to see.
I'll be glad when Christmas season is over.

I could write about that.
Maybe I will.

~~~
And right now, in this moment, that's all that comes to mind.
But, I'm sure there is more.
Yes, there is more.
~~~
I hope to ride Salem Lake today.
Due to symptoms, I haven't been able to ride it since November 13, 2015.
"November 13" causes a heart sink.
That's the day Paris was attacked.
It was a Friday.
~~~

~~~
Six hours later at 6:35 pm:
I rode Salem Lake, 15 miles.
The Salem Lake path isn't as red as my mind had remembered, but the trail banks are...and that's close enough.
I met an elderly man named Dick who rides a recumbent tricycle, his wheels to freedom.
I set a cycling goal for this quarter: 400 miles

This past Spring, 2015, as I accepted my new normal and the reality of living in 12-week cycles, I decided to make a calendar, countdown rally sheet and put on my fridge to help keep me focused and going until my next epidural. I could look at that calendar and I know relief was coming with the next epidural. Before these calendars, I would count down the weeks and days in my head. It's kind of like an every-three month paycheck for surviving. Wish I would get paid! :D

I am very cognizant that some folks with my type condition never get relief. I am grateful for my weeks of respite.

Below are two photos. 
The first one is my rally sheet from last quarter. It contains lines from a significant song  for me in living with this new normal.
The other is currently on my refrigerator to take me to March 7, 2016. It contains an adaptation of a Watney quote. No surprise there! :D




~~~

Hot Stuff

December 11, 2015

Yesterday, 12/10/15, ended my six-month experiment with Charlotte's Web™ Hemp Extract (CW). The result is...the experiment will continue. I've received enough benefit to keep at it. I'll continue to assess and experiment and adjust and keep notes.

I'm actually surprised at the amount of improvement I've had in only 6 months. Nerve damage is very slow to heal and the progress I've had in these 6 months is encouraging. Some of it, quite incredible. I keep reminding myself of that.

A few days after I wrote the November 23 entry below (which I was going to publish as a blog piece but never got back to it until now), I began my descent into the hell-weeks, or dark-weeks, as I've come to call them. These are the final weeks before my next epidural...which I will receive on December 14. It will be my 10th epidural since January, 2014.

With the improvement I've had the past 6 months, I was really hoping I wouldn't need this epidural, or that I could at least delay it. But that's not the case. I need it. That realization on Thanksgiving depressed me, of course.

Plus I've had anxiety. I always have anxiety when I get my epidurals. But not like I've had this time which is understandable given the circumstances.

The circumstances this time? My last epidural on 9/21/15, sent me to the ER. That had never happened in my epidural history. The good news is that the logical consensus is, because I am improving, the medicine dosage is too strong. So with this next epidural, the doctor is decreasing the steroid dose.

If the dose is too low, I won't get the beneficial results. If it's too high, I might get sick again which can have various consequences.

Since Thanksgiving, I've done well talking myself through the depression and anxiety.

Regarding the depression, I've reminded myself of how well I am this round compared to the pre-CW rounds. This is the second round where I don't have the severe, earth-sucking heaviness. That in itself is huge. There is still heaviness, but it's not earth-sucking. This round, I can form fists. I can't squeeze them, but just to be able to form them is advancement. I can do things now (like, among other things, dress myself & roll over in bed), that I had great difficulty with pre-CW. If I had to guess, I'd say overall that I'm at least 25% improved since my June 29th epidural.

Regarding the anxiety, there is no blood work or objective test to know exactly how much we should reduce the steroid dosage in my epidural. So, I have to trust the doctor. That's what it boils down to. I am taking extra days off work and will go off the CW for about 3 days and have the medication on hand that worked last time to stop any vomiting. If the dosage is too low and I don't get the benefits, I'll just have to manage for 12 weeks until my next epidural. So I have a plan and have prepared as much as I can mentally and physically.

That's all I can do.

And, as much as I'm able, I've "scienced the shit out of it." lol

I feel like I'm getting ready for a 3-month adventure, and I guess I am; where will my body take me this next round post-epidural?

In the meantime, I'll keep watching The Martian. I've now seen that movie 11 times! That's crazy! But it really inspires me. It's cheap therapy. I'll probably see it one more time before my injections on Monday.  I might have to write Ridley Scott about the significance of that movie.



"Hot Stuff" plays during the scene of Mark Watney driving the Mars rover which is now being heated by a decaying radioactive isotope. Not to mention Matt Damon is hot stuff. "Hot Stuff" was one of my theme songs that played through my Bluetooth as my legs were coming back to life this summer, pedaling my bike, Olivia (my Mars rover because she has saved my life), around the seven-mile, red-dirt, trail-road at Salem Lake, sweat dripping in 90-degree weather. My improvement is hot stuff too! Sing it Donna!

Also, comparing now, December, 11, 2015, to January 4, 2015, below...my nerve's don't feel all fuzzy like that now. They aren't inflamed so much now. The improvement is really remarkable. Remember that Carol. Remember that.

***

November 23, 2015

In the past year, as the nerve damage in my body progressed, I did lots of, what I came to call, "ceiling-staring." It became a pastime as I would lie flat on my back and stare at different ceilings noticing textures or patterns, thinking about the artists that installed and painted those ceilings, thinking about houses and modern life compared to a time when there were no houses so there were no ceilings. The sky was the limit then.

Sometimes, instead of lying flat on my back in a house and ceiling-staring, I would lie flat on my back on the earth. And I would sky-watch which would often end up tree-staring. And I would think about the wisdom of trees and how strong their limbs are and how they stretch toward the sun and bend with the wind and how much those limbs endure year after year and how many seeds a tree produces and the tenacity of life itself. And I'd ask the trees to "heal my limbs." Then I'd think about....a hundred other things, one at a time.

I feel like I've lain flat on my back more in the past 1-1/2 years than the rest of my life put together. And maybe I have.

On January 4th this past year, I decided to voice blog while ceiling-staring.  

From the hidden archives: 

January 4, 2015 

I'm trying something new. I am voice blogging from my iPhone.

I lie in bed watching the blades of the bedroom ceiling fan turn, round & round. I ask myself, "What do I do next? Do I put the effort into getting up and moving around? Or do I just lay here; it feels like a lot of effort to move upright."

This morning I was thinking of a way to describe the sensation in my limbs. I thought, "My limbs feel like the nerves are deadened or blunted at exposed ends and, at the same time, they feel ....sensitive." 

It sounds like a contradiction. But that is how they feel.

Last night as I observed my hands malfunction, I thought, "The last three fingers on each of my hands are like dead weight. But they aren't  dead weight; I can move them, slightly. But all they are good for is balancing; they can grip nothing. 

It sounds so serious. I guess it is. 

I get my spinal injections tomorrow, on Monday. My appointment is at 2:40 EST. 

I'm counting down the hours.

Then Tuesday will be another lay-low day.... while my body manages  & regulates the side effects from the epidural. 

Wednesday I should feel pretty good. At that point the side effects from the epidural will have subsided, and the side effects of the  injected medicine (steroids) will be in full force. That main side effect is indigestion & the feeling of a heavy inner-tube around my belly. 

But I will have my limbs and feet and hands back for sixish or so weeks, unless the pattern changes. I'd gladly accept tenish or so weeks.

These blurred fan blades....that's kinda how my physical nerves feel - fuzzy.

(end 1/04/15 entry)


***

Present pleasant memories...

I wish I could remember when I began riding my bike on a regular basis and when I discovered that I could! It was a new taste of freedom. Maybe I'll come across the date, or close to it, as I review some of my past written and typed ramblings.

This morning, as I reread the following ramble and then drank in the photo of the Roan with my grandpup Yerba, just staring at it, remembering that very day which I recall well, my body in the present just crumpled at the thought of hiking that expanse now. Instead of that reality causing me discouragement, it made me laugh! That's a good sign! :D Especially since I woke up so blue this morning.

Yes, I may never again be able to hike the Roan Highlands. But I was able to in the past, and I have that memory in the present to help lighten the burdens of life, a bit.

And maybe, with a little (or lot of) luck, I will be able to hike it again someday.

Until then, I'll keep on biking. At least in the warmer months. Not sure about the cold months yet. So far, biking-in-the-cold is not my cup of tea.

Interesting how memory of a past event is in the present. And in the next instant, that present becomes the past and a memory for a future present.

***

From the archives:

September 22, 2014

I love riding my bike along the Greenway.
I am addicted...and it is good.

I drink in the...
breeze
sunshine
aromas
wildlife...

and freedom.

My legs and feet turn the wheels round and round propelling me forward.
My senses take in the grandeur of the moment.
Any pain I have at those moments, goes by with nary a notice.

I am reminded of the hills and mountains that I love so deeply.
And my heart sings.

I picture the highland balds of Roan and of Grayson.
And my heart soars.

I recall backpackers and hikers I've met in the past along the trail.
And my heart warms.

I imagine climbing rough terrain, conversing with other backpackers, setting up camp for the night.
And my heart wonders.

Another world, a world in which I feel at home.
A world where I feel I fit.

And I think....
Maybe. Maybe. Maybe. Maybe someday I'll be able to hike long distances again. But, if I never make it by foot alone to Mt. Katahdin, I'll at least take a visit by vehicle someday. 

~grandpup yerba along the roan highlands, 2010~

~salem lake trail, near peterson benches, 2014~

~my bike, olivia, 2014~

Asocial

From the hidden archives

July 22, 2015

I seldom write these days.

But I think about it often.
What to write about...
Next....
Or later......
Or maybe someday.

If I do write, dare I display it?
Who would read it?
Who will it offend?

It will always offend someone, even though I don't like offending people.
I don't like conflict.
Offense is conflict.
And then there's defense.

Offense.
Defense.
Us.
Them.

As I rode my bike today, my thoughts meandered to one of my often-thought-about subjects.
I have become somewhat asocial, in a sense.
Not anti-social.
But asocial, not social.
I seldom seek the company of others.
I often analyze how I have come to this place of solitude.

Perhaps solitude is the wrong word.
I'm not a monk or a hermit.

But I am alone often, but not really alone because people are all around.
Alone in their giant tin cans on wheels.
Talking on their phones or listening to music.
But not live music, recorded music.

Before the gramophone, all music was live.
People picked up instruments and made music.
People sang and whistled and hummed.

That is something else I often think about.
As I ride my bicycle alone on the Greenway.
With music playing into one ear.
Songs coming from my cell phone to my Blue tooth via satellite from Pandora which creates algorithms according to songs I have preselected.
I don't know what an algorithm is, but it's a fun word to say.

Sometimes I choose to turn off the algorithmically-selected music.
I take the ear bud out of my ear.
I let birds sing to me.
And the leaves.
And the breeze.

And people occasionally pass by.
We always nod to one another, and sometimes speak.
A couple days ago a biker caught me dancing beside the trail as I listened to the music playing through my earbud that only I could here.
He laughed heartily.
I did too.

See, I'm not anti-social.

"...the Seventh Generation of children to come..."

In our way of life, with every decision we make, we always keep in mind the Seventh Generation of children to come. When we walk upon Mother Earth, we always plant our feet carefully, because we know that the faces of future generations are looking up at us from beneath the ground. We never forget them.
~Oren Lyons, Faithkeeper of the Onondaga Nation
Quoted in the book  Walking on the Wind: Cherokee Teachings for Harmony and Balance by Michael Garrett.

I've never thought of it like that.
"It" being the generations to come looking up from the ground, as I feel that ground beneath my feet.

Step after step.

Most often, I think of ancestors as I walk the soil.
Until I'm tired on a walk, I am quite conscious of the blood spilt from past generations. 

The peoples who once dwelt here.
The animals. 

The plants.
So much life and death, and life and death, and life and death, and life...
I have called it "blood soil."

But I've never thought of future generations looking up at me from the soil.
It conjures up kind of a spooky image.
But I get it, from a figurative sense, whether Lyons meant it figuratively or not.

Of course, I am most always cognizant of the impact I make upon the earth.
Upon her resources.
Upon future generations.
I'm just one person, and I do the best I can.
Though it never seems enough.

Recently, I again see photographs of the destruction caused by Daesh. (ISIL)
The extremists not only rape the people, they rape the earth.
Of course, the USA is not innocent in the matter.
Sadly, I help fund the machine with my tax dollars.

I hiked 4.85 miles yesterday.
Quite a feat for me.
Hiking is much harder on me than biking.
On my hike I saw 3 turtles, 4 deer, 1 chipmunk, a bunch of water bugs, and a few birds.
I saw 0 humans. No cars. No people. No voices.

It was quiet in the woods, a bit too quiet.
So I kept my eyes and ears keen for any bears.
Fortunately, I saw no sign of bears either.

After my walk, on my drive home, I passed the movie theater.
The Peanuts Movie was playing in 3D.
So I went.
I was the only person in the theater.

Zero people at the state park where I hiked.
Zero people at the theater.
I kind of felt like Charlie Brown as I looked around the empty-except-for-me theater and as I thought of my lone hike earlier in the day.

Seven generations.
Currently, a generation is considered to be around 25 years.
In the past it was considered to be around 20 years.
Seven generations from now will be around the year 2190.
Seven generations ago was around the year 1875.

In 1875, on December 30th, the "Andrassy Note call(ed) for Christian-Muslim religious freedoms." 
I'd never heard of the Andrassy Note until this morning when I did a web search on what happened in the year of 1875.

War. War. War.

It never ends.

My hike yesterday was along the Horne Creek and Bean Shoals Canal Trails.

Some bald eagles have a nesting site not far from where I took the photo below.

I hope to catch a glimpse of the eagles in February when they return to ready their nest. 

I wonder where the eagles will be seven generations from now? 

Drug reps...how 'bout some doodle pads?

I'm writing again.
I often think about writing.
So much to share.

Not enough words.
Not enough pictures.
Not enough time.

That's how it seems.

But I really don't believe that.
I choose to believe that there are ample words and pictures and even, time.
Perhaps that is a delusion on my part, or an illusion.

Reminds me of the time when I realized that I do not manage time.
I move through time.
I manage my responses.

As I've started to blog again the past few weeks, I've been reviewing past posts.
It's fascinating to me!
Which makes me laugh.

I am so glad I know how to write and that I have a record of events.
When satellites crash, all my internet writings will crash with them.
Perhaps, maybe, one day, I'll get around to a hard copy form of the more pertinent entries.
One day in the future, I might have some distant relative or progeny take an interest in this ancestor.

In the last year, about the only thing I've been writing are notes and records regarding my health.
Beginning some time in 2014, I started regularly typing my notes for the two doctors who help me manage my care.
One is my neurologist.
The other is my chiropractor who I see for nutrition and functional medicine and, occasionally, for chiropractic.

I usually print three hard copies of my notes.
One for the each doc and one for me.

Up until June, 2015, my notes were 'just the facts mam.'
No frills.
No emotion, that I can recall.
Just stats and symptoms and patterns and responses.

Then in June, 2015, I started to see improvement in my symptoms.
And, my notes started exploding a bit...with exclamations of ecstasy! :D
I now label it the "good stuff."

On November 2, 2015, I had to see Neurologist for an in-between-epidurals appointment.

While I waited in the examining room, I reread my notes.
I wrote a couple more items that I had forgotten to list in the typed notes.
And I doodled on the "Good Stuff" section.

I doodled a mountain scene on Neurologist's copy.
He liked it, this artful addition to the "Good Stuff" text.

When he spied my copy and its doodles which were different from his, he really liked those.
"Wow. Look at yours! You've got some talent."
That made me laugh.

You know those pharmacy reps that visit doctor offices and leave note pads and Kleenex and pens and clever little figurines and pamphlets and free drugs?

Well, I think they should donate doodle pads and drawing pens around the waiting and examining rooms.
The doctor's office could have a bulletin board for those who want to share their doodles.
A board filled with patient doodles.

Doodles for wellness....

Timeline since 2011 and the onset of nerve damage...

The past week I complied a timeline and information about the past 4-1/2 years living with nerve damage.

I want a separate blog entry with that information.

The timeline is presented in bullet-format.

Initially the timeline was brief, but has expanded from when I first posted it. It's still "brief" compared to everything that's happened.

Seems all my posts are working drafts. Much like life.


***
The nerve damage began in 2011 and has been an ongoing nightmare.

Since the onset, I have tried acupuncture, juice and broth fasts, diets, supplements, herbs, medications, coffee enemas (to help liver function), massage therapy, bicycling, water exercise, physical therapy, occupational therapy, psychological counseling, meditation, visualization, and possibly a few other things. Some approaches have helped; some haven't. When I try a new approach, I typically give it at least 90 days before deciding whether or not to continue.

I am not the only person to develop nerve damage while taking oral terbinafine. I have since learned that many drugs can cause nerve damage.

My symptoms started in feet and legs; I thought I was just becoming clumsy.
Shortly thereafter, I began to notice it in my hands and arms; my smart phone became heavy.
Once I realized that something was going on, I immediately quit taking a drug I'd been on for about six weeks: terbinafine (generic oral Lamisil).
But it was too late.
Within a week, all my limbs turned to rubber.

The initial symptoms were clumsiness, inflammation in all my limbs and extremities, low level persistent pain, shooting pains, numbness in toes and fingers, tenderness in palms and soles, and a stocking-and-glove pattern with a pins-and-needles feeling.
As time went on, other symptoms developed including lumps in my wrists and hands and ankles that would move around when pressed, and the bizarre sensations (especially in my forearms) of heavy wet sand moving about like mercury and of something trying to bend my bones internally.
Symptoms have slowly spread up my limbs and to my neck (10/2015) and partially up my back (11/2015) and to my jaws (01/2016).
Some of the initial symptoms (such as pins-and-needles, numbness, shooting pains, and numbness) have abated and are no longer ongoing, but occasionally they reappear.
Some of my symptoms mimic ALS: muscle atrophy, weakness, appetite suppression. weight loss (30 pounds in a year), heaviness of limbs, and fatigue.

The nerve damage dictates my life.
Every decision is based around the disability and what will help me each day to continue to function.
I've had to learn to move my entire body, from head to toes, differently so as to prevent injury.
I've had to even adjust how I chew food, and swallow.
I have to choose where best to expend the limited energy that comes with the disability.

Like everyone else I live my life moment to moment.
Unlike others, I live my life in 12-week cycles, the goal being to keep my limbs functioning until my next round of spinal injections.
It is my new normal.

Many of my previous later-life goals are now wishes.
I am not accepting defeat.
I am accepting reality, knowing that reality can turn on a dime.

As of this writing, my reality appears to be turning, in a good direction.
I hope so.

***

• In early spring of 2011, I took a medication, oral terbinafine (brand name, Lamisil), to treat a long-standing toenail fungus which had not responded to previous treatments. Six weeks later, my limbs turned to rubber. I stopped taking the terbinafine.

• In May, 2011, I received my first diagnosis: idopathic edema. I was put on medication and was custom-fitted with compression garments that stretched from fingers to armpits and toes to groin, on both sides. I received weeks of occupational and physical therapy. All to no avail.

• In July, 2011, I received my 2nd diagnosis: idiopathic serum-sickness-like response to oral terbinafine. The treatment? Low dose prednisone until symptoms disappear.  The longest cases seen by the two different doctors I then consulted were 12 months and 18 months. Prednisone kept me from becoming bedridden, but symptoms slowly worsened.

• In January, 2013, I began to consult neurologists. In February, I received carpal tunnel surgery on my right wrist. It helped the numbness in my fingers, but nothing else. 

• In April, 2013, the doctor who was prescribing my low dose prednisone wanted me to consult yet two more specialists (another neurologist and another rheumatologist) which would be at least a six-week wait. I was fine with that. But, instead of taking low dose prednisone to continue to manage my symptoms for those six weeks, she told me to take more Xanax. She refused to refill my 5 mg prednisone prescription; she was concerned about side effects. So was I, but everything else I was trying wasn't working to keep me functioning. The prednisone was keeping me from becoming bedridden; Xanax would be no help. I was livid. I argued with her, but she would not change her mind.

• So, after researching the web for over six hours and after three phone calls, I discreetly and quietly and illegally ordered my 5 mg prednisone tablets from India. Sounds crazy. But I was desperate. Prednisone was the only thing that was keeping me from becoming bedridden. 

• That same April, 2013, a friend suggested her neurologist, and I made an appointment. He would be the third neurologist I had consulted since January, 2013. The previous two had no diagnosis for me, other than carpal tunnel.

• In May, 2013, that neurologist, who is my current neurologist, gave me my 3rd diagnosis: polyradiculitis. The treatment, until an underlying cause could be determined? Corticosteroids. No wonder the prednisone was helping me. 

• Polyradiculitis is a rare type of peripheral neuropathy in which multiple nerve roots are swollen at the spinal cord. My nerve roots that are effected are the lumbar and cervical nerves which extend through both lower and upper limbs and extremities and can also cause symptoms in the neck. Like other types of peripheral neuropathies, there is no cure for polyradiculitis, unless an underlying cause can be found and treated. Until then, the patient figures out how to manage as best they can. Polyradiculitis can produce some symptoms that mimic ALS.

• In May, 2013, I began receiving steroid injections in the base of my palms.

• From mid-April, 2013, through December, 2013, I received acupuncture on an almost weekly basis. I also consumed herbs compounded specifically for my condition.

• The nerve damage continued to slowly spread and worsen.

• In August and September, 2013, I had to downsize my pet-sitting business by around 90%.

• In January, 2014,  we quit the palm injections and I began receiving spinal injections: a steroid lumbar epidural and steroid cervical neck shots. It was like night and day; I awoke the next morning and could make a fist for the first time in over two years. I got good relief for 4 weeks and then the effects would begin to wear off. I received epidurals and neck shots about every 6 weeks between January and July, 2014. Then, for insurance and medical protocol reasons, I had to go to every 12 weeks. Since July, 2014,  I have continued to receive them about every 12 weeks. Without them, I'd be bedridden. But even with the epidurals, my symptoms slowly continued to worsen and spread. (Steroid injections generally have less systemic side effects than oral steroids. But I still need daily, low dose, oral steroids to keep me functioning between epidurals as the effect of the injected steroids wears off.)

• In latter May, 2014, I began researching the medicinal benefits of cannabis, especially regarding neurological disorders. On May 19, 2014, my path had crossed with "Jason (trail name Rising Tide), who was in process of thru-hiking the Appalachian Trail. In 1999, Jason was injured in an auto accident and suffered a severe spinal cord injury which left him paralyzed, a quadriplegic. Doctors told him he was permanently paralyzed; he would never recover. Fortunately, they were wrong.  He attributes his recovery to time and "lots of weed." I was almost speechless as he shared his story with me. In my mind, I have recounted, that encounter, countless times.

• In January, 2015, I added the medication hydroxychloroquine (Plaquenil) to my daily regimen and have continued to take it.  The only other daily pharmaceutical I currently take is prednisone which I've been taking since July, 2011. I occasionally need a hydrocodone and occasionally, alprazolam (Xanax). I swallow around 28 pills a day. Most are supplements to address immune function, nerve damage, and side effects of medications.

• On May 22, 2015, I received an email announcing that the Stanley Brothers CW Botanicals had begun shipping Charlotte's Web™ Hemp Extract to all states except Florida and New York. Charlotte's Web™ is a cannabidiol-rich hemp strain. 

• On June 10, 2015, as a six-month experiment, I added Charlotte's Web™ Hemp Extract to my regimen. I began to feel incremental, slight improvement on June 15, 2015. As of this blog entry, I am still improving. 

• Beginning in July, 2015, I have slowly felt my muscles regaining ability. I began to feel my thigh muscles working. I began to be able to lift my arms with less assistance.

• From July 1, 2015, through the current date (November 10, 2015), I've been able to manage symptoms with lower daily doses of prednisone compared to my daily doses from July, 2011, through June 30, 2015.

• In mid-July, 2015, my blood tests revealed that I am vitamin B6 toxic which can also cause nerve damage, muscle weakness, fatigue, appetite suppression, and heart burn; all of which I manage. I have since adjusted my diet endeavoring to lower the B6.

• In August, 2015, for the first time since I started being tested in 2013, my nerve conduction study and electromyography tests showed that the nerve damage is no longer progressing and has, in fact, reversed course. My body, with a little help from friends, has stopped the progression. Better yet; it's correcting itself.

• From August 24, 2015, through September 21, 2015 (which were the last four weeks preceding my routine 12-week spinal injections), I did not experience the severe limb heaviness that I did in the previous "last four weeks" routines. That severe heaviness became one of my worst symptoms. As the medication from my every-12-week injections would wear off, I'd begin to feel like I had the weight of a dead body strapped to me, or like my limbs were filled with tiny magnetic slivers and the earth was trying to suck me to its center. The heaviness was severe. The dread leading up to those routine rounds of "last four weeks" was almost as bad as the reality. 

• In August and September, 2015, my hand grip strength showed an improvement of around 37% compared to May and June, 2015. That put me at around 42% of normal. 

• In August and September, 2015, my walking speed showed improvement of around 85% compared to May and June, 2015. That put me at around 100% of the average speed of a sixty-year-old female. 

• In September, 2015, for the first time since I began receiving lumbar epidurals in January, 2014, my epidural made me sick. So sick, I had to go the emergency room about 24 hours after receiving the epidural. Consensus is, since I'm getting well, the medication in my epidural is now too strong. 

• In early October, 2015, I was able to clap my hands for the first time since the fall of 2012. 

• In October, 2015, I was able to stand up and pedal  on my bicycle for the first time since I started biking with nerve damage.

• On October 26, 2015, the nerve damage moved into the nape of my neck on the right side. I was very discouraged. A week later I had to get steroid shots in my neck. My doctor encouraged me to not be discouraged; it's just a side track and not unusual for the nerve damage to move there next. 

• As of November, 2015, it appears the Charlotte's Web™ (CW) is helping significantly. As stated above, I began to notice improvement 5 days after starting CW. Another factor that may be involved is hydroxychloroquine which I began taking in January, 2015. That drug can take up to 6 months to start working. My gut feeling is that CW has been like a linchpin, adding a missing ingredient that has catalyzed my endocannabinoid system to start working more effectively which may be producing a synergistic effect for other systems to also work more effectively.  I am continuing to slowly regain function in my limbs. How much I will improve and for how long remains unknown. I have been and still am keeping notes and records. 

• My next epidural and neck shots are scheduled for December 14, 2015. The medication dosage in the epidural will be lower than previously. It will be my 10th epidural since I began receiving them in January, 2014. It will be beyond my dreams if I do not need that epidural. 'Til then, I'll just keep doing what I'm doing.

Timeline update: 11/10/15 - 12/23/15

• On November 24, 2015, the nerve damage moved into my lower back and up my spine on both sides. It spread upward for about two weeks, stopping below my shoulder blades. I have not had shooting pain; but rather, lots of weakness and strain-type pains.

• Around that same time (the week of November 23, 2015), which was post-epidural-week number nine, my overall symptoms worsened which is the normal pattern between epidurals. I was hoping that this routine pattern might not happen this round and that I would be able to at least delay the December 14th epidural. I was quite depressed with the increase of symptoms confirming that I would need that epidural. But, even with the increased symptoms, comparatively speaking, I guesstimate that I was still around 25% better compared to post-week nine in June, 2015, and probably 10% better compared to post-week nine in September, 2015. If not for the nerve damage spreading to my neck and back in October and November, 2015, I would have estimated that I was 40% better compared to June, 2015. Again, just like the previous round in September, I did not experience the "last four weeks" severe heaviness. That is encouraging, to say the least.

• On December 10, 2015, my six-month Charlotte's Web™ Hemp Extract experiment which I began on June 10, 2015, was over. The improvement has been significant. So I will continue taking Charlotte's Web™ and assessing.

• On December 14, 2015, I received my routine 12-week epidural. Due to my improvement since adding Charlotte's Web™ (CW) to my regimen and because my last epidural on 9/21/15 made me sick, my neurologist reduced the medication in my epidural by 50%. (That is HUGE!) Around March, 2015, I had asked the neurologist if we could increase the amount of medication in my epidural to maybe give me more and/or longer relief. He responded, "No. You are as high as you can go." And now, at the end of my six-month CW hemp extract experiment, that same medication which I had previously asked about increasing was decreased by 50%. It really is a big deal. December 14, 2015, was my 10th epidural since January, 2014.

• How am I faring on the 50% reduction? I estimate that I'm receiving around 70% to 80% of the relief that I normally have by this time after my epidural. Not bad, since I had a 50% reduction in medication. I do miss the larger relief, and the comparative 70/80% relief has caused me some discouragement and depression. But, I'm handling that and adjusting and getting 'back on my game.' It will be interesting to see how I fare as the effects of this epidural wear off.

• My next neurology appointment is on Monday, January 25, 2016, to get shots in my neck if I need them. My next epidural will probably be on Monday, March 7, 2016. 

***
Between 2011 and 2013 I consulted at least eight different medical professionals before finding my current neurologist. Some of those consults were helpful; some weren't. A few were harmful. By the time I found my current neurologist, I felt I had to be my own defense attorney.  If he didn't 'hear' me, I was ready to hire a patient advocate. Thankfully, he did hear me and continues to help me manage the condition.

I could write multiple rants regarding a medical practice/system that requires patients to jump through multiple hoops proving they really are in pain when they are just trying to figure out what's wrong and how to get relief. That story line is far too common in the USA's outrageously expensive, insurance run, medical industry.

~ you just, begin ~

Toss & ripple has a new look.

I also cleaned up my side bar and organized certain links, regarding The Way and regarding recovery resources and books, into two different pages.

I'm proud of how the two new pages turned out.

Here are the links.
Beyond The Way International: Information & Connections
Restoring the Soul: Reading & Resource List

I've also updated About me, About this blog, and For the record.

Maybe with a new look, I'll start posting more blog entries? Maybe?

I've been thinking about writing about my reactions to the movie, The Martian.

I've seen it five times!

Five times! Oh my word!

So many parallels to what I've lived and continue to live through managing nerve damage. I won't go into the parallels here and I may never write them down. But they are in my head, and my limbs, and my heart...at least for now.

I literally knew nothing about The Martian until October when I saw its trailer roll across the theater screen before Everest played. I saw Everest the day before my first view of The Martian. (Everest is really good too, but I've only seen it once. The scenery is spectacular. The scale of the size of the climbers to the mountain, incredible. I saw the original Everest on an IMAX screen a few times back in the late 1990s; it's a documentary and one I'll not forget, at least as long as my brain continues to remember. Like Shakleton's Antarctic Adventure, which I saw more than once in that same IMAX.)

The disco soundtrack music in The Martian is especially significant for me.  Since maybe May (?), 2015, disco has been one of my main body-and-soul recovery music genres. Ain't that funny.

My disco music has rooted me on as my nerves and muscles, and many abilities a non-disabled person takes for granted, have been coming back to life this past summer as I continued alone, but not alone, to just keep my limbs working. I'm still working at it. It takes priority over everything else in my life and continues to be my focus every single day.

And there, in that movie, was my music.

It sounded through the theater speakers as Mark Watney alone, but not alone, comes to terms with what seems to be impossible circumstances. And actually they are because it is a science-fiction movie.

All so serendipitous.

Last time I checked my life, and symptoms and struggle, are not science fiction.


My new favorite quote is,
"You just, begin."
~Mark Watney, Space Pirate

My second new favorite quote is my own,
"Wherever I go I'm never alone; I always bring Mia Long."
~Oneperson, Discoverer  ;)





"At some point, everything's gonna go south on you and you're going to say, this is it.
This is how I end.
Now you can either accept that, or you can get to work.
That's all it is.
You just, begin.
You do the math.
You solve one problem and you solve the next one, and then the next.
And If you solve enough problems, you get to come home."
~Mark Watney, Space Pirate

Thought dump...with pictures...

***
Dump One

October 28, 2015, marked the day when ten years ago I officially left The Way.

But the bigger milestone than that 10-year anniversary is: I've now spent half my life as non-Way and half as loyal-Way; 28 years 'in,' 28 years 'out.' I'm at ground zero, so to speak.

I'm 56 years young. I got involved with The Way in Fall, 1977, at 18 years old. I 'left' The Way in Fall, 2005, at 46 years old.

28 in; 28 out.

It's kind of like I've been born again. *biggrin*

I say "officially" left because on the afternoon of October 28, 2005, Hubby was on the phone in the kitchen and I was on the bedroom phone. On the other end of the line on two different phone extensions, were the husband-and-wife team whom we had served with for the previous seven or so years. At that time they served as the state and region coordinators. I was letting them know I was leaving.

"Unofficially" I'd been 'leaving' The Way for at least eight years prior to October 28, 2005.

In a sense, I'm still unofficially 'leaving.'

***
Dump Two

The Way always stated (and probably still does) that a person can't "join" The Way, that there are no "members" other than the Board of Directors/Trustees. Right! *sarcasm*

All a follower has to do is commit her soul and her marriage and her family and her finances and her time and her identity to become likeminded and grow into the "new man" and live love according to The Word. The Word says to demolish your human logic and every imagination that exalts itself against the knowledge of God and bring into captivity every thought to the obedience of Christ. The only way to have the knowledge of God is through God's rightly-divided Word, the Bible, of which there is only one right interpretation according to whom it is written and the context and various layers and nuanced definitions; otherwise, it's not rightly-divided. That Word is the end and the beginning of knowledge. Whatever does not line up with that standard is, at the least, unproductive evil; at the worst, destructive evil.

But you can't join The Way.

So no worries! (another *sarcasm*)

I once believed all that.

I don't anymore.

It tires me to think about it!

So I mostly think about other things these days.

***
Dump Three

One thing I'm thinking about is closing toss & ripple. By closing I really mean going dormant. I'd disable 'comments' and leave the blog be. I've thought about really 'closing' it from all public view, but other folks have links to entries which I think are important. I don't want those links to disappear.

How about yet another blog? I don't know. Most of my other start-ups end up flat because I don't post on them.

Nice thing is, I can choose.

***
Dump Four

Choice.

Wow, what a concept.

I remind myself regularly that I have freedom (at least in part) to choose...not according to another's dictates, whether that "another" be person or spirit or holy writ. I can choose based on what I deem important and/or desirable, on what will energize me and make life meaningful. I can choose based on the collective knowledge and experience and genetic code and whatever else is all wrapped inside, including intuition.

***
Dump Five

My health is faring well comparatively.

Except that the nerve damage moved into the nape of my neck on the right side on 10/26/15. I don't feel like typing out the details which includes the pattern over the last few years. But it scared and scares me. I ended up at Dr. Neurologist yesterday and got around 10 shots in my neck; it's 3 syringes, but around 10 pokes. I have a headache today. But Doc is good and quick with that needle.

From 9/22 through 10/17, I stayed at 1.25 mg of daily prednisone and was able to function. That hasn't happened since July, 2011, when I started taking daily prednisone. (I had to increase my daily dose beginning 10/18/15 which is a typical pattern in my 12-week cycles. I received my epidural and neck shots on 9/21.)

I was more social in October than I've been in the whole past year put together. It's time I back off again. And that's okay.

Between 9/24 and 10/24, I biked 243 miles over 23 different days. My goal was 600 miles this 12 weeks. But weather and now my neck condition and business workload are probably going to make that non-doable. And that's okay. It's been raining heavily again this week.

I can still pedal my bike standing up, and I can still clap my hands.

I'm still on tap for my lumbar epidural and more shots in the neck on December 14. But, I'll get less medicine in the doses. That upcoming round of injections is kind of scary too. I'll have to prepare a bit differently.

***
Dump Six

I love to ride my bike. It's my new passion and a good one. I could dedicate a blog site to my bike Olivia, and I'd include my 1999 Ford Explorer, Sir Edward.

At the top of my fullness-of-life rides is where I road on October 12 - the Railroad Grade Road between Fleetwood and Todd, NC, in the Blue Ridge Mountains. It was a big day for me; to ride 20 miles on a paved road where cars drive; to ride in this strange place alone, though it wasn't really strange because I was with the trees and the river and the wildlife and my mountains. Though there are cars and trucks, they are few and drivers are biker friendly. I still felt somewhat naked along the road, exposed, vulnerable. Yet awed by the beauty.

Olivia along the New River. Railroad Grade Road. Fleetwood, NC.

At the top of my whew-that-was-close rides is my October 20th Salem Lake trip. A big, beautiful German shepherd lunged me as I was cycling by he and his walker. I figure I was going 7 to 9 miles an hour. I felt his top tooth hit my knee as he pulled away ripping my pants; he didn't break the skin. I pedaled faster to get away as I stuck my hand in the torn hole checking my knee for blood.

~whew, that was close~

The dog was on a leash. Since I wasn't hurt I didn't turn back. I did warn three approaching cyclists; two of those were elderly. If I see that dog out there again, I'll have to dismount and talk to the walker. Hopefully, the owner has sense enough to not allow that dog where there are bikes.

The Salem Lake trail is a 7-mile, dirt, loop, road around Salem Lake. The dirt road is about the width to fit one and one-half cars. Only authorized motorized vehicles are allowed and are seldom seen. Walkers, cyclists, dogs on leashes, horses are all allowed. I've ridden the loop at least 35 times since the spring.

***
Dump Seven

On October 1st, I finally put flowers on my parent's gravesite. Dad died in 1996 and Mom in 2009. I selected the flowers and greenery and fruit, and arranged them myself. I like how the arrangement turned out. I think Mom and Dad would too.

Before visiting Mom and Dad's gravesite, I stopped in at the Catawba County Museum of History. It was fascinating going through the exhibits looking for names I knew; the polio camp; prohibition; pottery and arts; and all sorts of stuff. I bought a book for my daughter from the bookstore; she requested a copy over a year ago. A photo of most of Mom's family takes up a whole page in that book. The boys are missing; I think because they were serving in the war.

After I visited Mom and Dad, I met up with an ex-Way friend whom I hadn't seen since the early 1980s; she left The Way in the latter '80s. We "got in the Word" together in 1977. About five years later, she moved to the west coast and just moved back east this past year. Her 5-or-6-year-old granddaughter joined us for supper. We ate at Mellow Mushroom where a balloon lady just happened to be spreading smiles; she made a lady bug for Friend's granddaughter. Friend's daughter, whom I hadn't seen since she was a toddler, stopped by after supper to pick up her daughter who proudly showed Mom her lady bug.

That was quite a day.
Stepping back in time.
Surreal.

On the way home Pandora chose Forever Young to play through my Explorer speakers.
Bob Dylan was singing.
Pandora is god. *biggrin*
***



Forever Young
Bob Dylan

May God bless and keep you always
May your wishes all come true
May you always do for others
And let others do for you
May you build a ladder to the stars
And climb on every rung
May you stay forever young
Forever young, forever young
May you stay forever young.

May you grow up to be righteous
May you grow up to be true
May you always know the truth
And see the lights surrounding you
May you always be courageous
Stand upright and be strong
May you stay forever young
Forever young, forever young
May you stay forever young.

May your hands always be busy
May your feet always be swift
May you have a strong foundation
When the winds of changes shift
May your heart always be joyful
And may your song always be sung
May you stay forever young
Forever young, forever young
May you stay forever young.

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.