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.

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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)


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