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)


***