Will it be enough...

Prompt: Not enough

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Wednesday, 6/22/22, 8:35 PM

I'm in Week 11, Day 3. Tomorrow will be Day 4.

I continue to work my 20-point plan. 

The low-level laser light therapy is doing something. My thoracic pain which began in early 2020 is completely gone. My overall inflammation isn't as bad as usual, for Week 11. My brain fatigue isn't as bad as usual for Week 11. I'm weak and slow, which is normal. 

I've been able to stay at 6 milligrams prednisone, except for one day when I had to go up to 8 milligrams. I don't know how long I can continue at 6 milligrams, but I will stay at 6 as long as viable. That I've been able to stay at 6 since receiving my cervical spine trigger point injections on 5/24, is quite remarkable. Normally, in week 11, I'd be taking 15 to 17 milligrams and titrating down and then maybe up and down before my routine steroid lumbar epidural after the end of week 12. And even then, my symptoms would be ... really .... bad. 

The skeptic in me has a hard to time admitting that, Carol, it's the laser treatments. I'm also working the other 19 points in my plan. The big test is next week, the dreadful Week 12. 

I've been on prednisone daily since July 2011. I do my best to keep it below 7 milligrams per day, boosting up and titrating down between injections. But as time has rolled along, I've needed to boost more often between epidurals and injections.

I'd receive steroid lumbar epidurals every 12 weeks. At the 6-week mark I'd receive steroid cervical spine trigger point injections, nine of them, in a circle at the base of my neck. I started receiving epidurals in late December 2013 or early 2014. Cervical trigger point injections started shortly thereafter. 

For nine years my life has revolved around these repeated, 12-week, roller-coaster, divided-into-two-6-week, rides. Up and down, up and down. Symptoms from polyradiculitis going from severe to not-as-severe and then, with the steroid epidural in my lumbar, to functioning almost normally for a few weeks. At least that was the pattern for years. As time went along the injections didn't work as well. My last epidural was April 14, 2022. It was my 38th; there will be no 39th. 

Two good-sized blood clots, one in each lung, changed all that on April 28th, 2022. I now have to daily take a blood thinner drug and, even for me, the risk-to-benefit ratio of receiving an epidural while on blood thinners is too high. I can receive trigger point injections, but even those aren't working as well. The nine I received on 5/24, didn't work well at all.

The next week-and-a-half and beyond? I just don't know what is going to happen with my symptoms.

The laser treatments along with the other 19-points in my plan, will it be enough to sustain me so that I can somewhat function? 

My functional medicine doctor didn't start offering the low-level laser treatments until April 26. I landed in the hospital with deadly blood clots on April 28. I learned I could have no more epidurals on April 30th.

Two days a week, I drive a 3-to-4 hour round trip for my laser treatments. With driving, plus the appointment and pitstops, the whole trip takes around 6 (or more) hours. I usually go on Mondays and Thursday. I am scheduled through the end of August. 

I get my 15th treatment tomorrow on the Day 4 of Week 11. 

~*~*~

Saturday, 6/25/22

 About 1.5 hours after I wrote the above on Wednesday night, I fell.

It was a hard fall...in my home, in the dark, misjudging my place in the dark space. Fortunately, I broke no bones nor sprained anything. But nerve damage was exacerbated in both my arms and in my left hip and leg. The exacerbations have calmed some, and a small cut I sustained to my knee is healing well. Hubby had to drive me to my laser treatment the next day. 

I hadn't planned a fall into my trek through the Valley-ravine of Shadows. But I always carry a first aid kit. 

Today, 6/25/22, is Day 6 of Week 11. 

~*~

Added note about corticosteroids:

Corticosteroids (prednisone and its relatives) have lots of well-known side effects.  Such as...

Spontaneous bruising and fractures. Bone loss. Muscle wasting. Diabetes. Heart disease. Immune suppression. Adrenal-function suppression. Candida overgrowth. Weight gain. Humpback. Moonface. Mood disorders. I'm probably missing a few.

Along with the nerve damage itself, these possible side effects are one of the main things I have to monitor and endeavor to prevent. I do so with nutrition, physical exercise, journaling, mental health exercises, and more. (I am thankful that I and Hubby have the means to afford all I do to help my body to function as well as it can; things insurance won't touch.)

In my studies, I read that the human body produces around 7 milligrams of cortisol per day. So, I have tried to keep my daily prednisone below 7 as much as I can to help my adrenal glands to keep producing at least some of their own natural steroids. My adrenal glands are no doubt functioning at a low level after over a decade of steroids; not only oral, but also injections which have ranged from over 240 to 120 milligrams per every 6-week injections/epidural treatment. (Actually, it's been longer than over a decade; in my past chronic illness life, steroids kept me breathing. But I was able to get off them after almost 20 years, and I no longer suffer with asthma.)

From my understanding, in order to check to see how well my adrenal glands are functioning, I'd have to go off steroids, which would be dangerous for me at this point because I have been on them so long. Plus, the treatment for low/no adrenal function is...daily prednisone. There are only three medical treatments for polyradiculitis: IVIG therapy, plasmapheresis, and steroids. Because my lab work didn't show the correct autoimmune markers (which was checked multiple times), insurance would not cover IVIG or plasmapheresis. At the time (back in 2013), I was told that the cost for either of those was $10,000 a pop, and I might have needed them every few weeks for an undetermined amount of time.

The trek took a turn...

I'd like to find the sections of the book. Sections that prompted tears as I read the words about John Pepper whom, at that point, had had Parkinson's for over thirty years. Words describing the labor-intensive focus required to move one's body. 

~*~

I don't have Parkinson's, but the words are describing me...

They get it. They totally get it.

I read about Pepper's discovery that walking saved (and continues to save) his limbs and mobility, among other parts... 

That's me. And biking. 

On page 62 in my hardcopy, the author states, "...But at times I feared Pepper was a man caught in some Dantesque level of hell." 

OMG! YES!!! That's it exactly! Living in these 12-week cycles divided into 6 weeks each. That is exactly how it's been, a Dantesque level of hell and being bumped around between those levels. Oh, the many times in my journals that I've written about the insanity of it!! It could drive a body madd, if they let it. 

The author continues, "He [Pepper] had longed so much to return to movement; now his wish was granted but only if he concentrated on each and every muscle fiber as it twitched. He might be walking, but was it at the cost of losing the free flow of spontaneous thought?"

He gets it all the way. Not exactly me. But damn close. When I discovered I could ride a bike despite my nerve damage, and that cycling brought me good temporary relief, I knew I had to cycle to keep my synapses firing. It was like, I had to cycle to keep my nerve cells communicating. If I didn't, they'd go quiet really quickly. Cycling wasn't and isn't an option for me, if I want to stay mobile. It's my job. And moving, especially everyday movements of dressing, walking, writing, standing, bathing, whatevering... takes so much focus. Cycling less so, once I'm in the saddle and pedaling. Getting on and off the bike? Focus, focus. 

The book is The Brain's Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity by Norman Doidge, M.D., published in 2015.  Part of my current self-help work is to read and study the book which was suggested by one of my doctors. So, I am. And it is fascinating. 

It reminds me of a book I read last year and continue to go back to: Cured: The Life-Changing Science of Spontaneous Healing by Jeffrey Rediger, M.D., published in 2020. 

Cured is about, among other topics, outliers in the terminal illness field. That is, folks who get well and aren't supposed to. What are the commonalities? How can others apply them? It's a must read, in my opinion. 

TBWoH is about, among other topics, outliers in the neurological field. That is, folks who improve or get well that aren't supposed to. What are the commonalities? How can others apply them?

~*~

My weeks of Dantesque hell are over. 

I can no longer receive epidurals...

...which for the past nine years have brought me temporary relief so that, for a few weeks every 12-week round, I felt what it felt like to be 'normal.' To be able to move with relative ease, without so much concentrated effort. 

My weeks of Dantesque hell are over. 

I can no longer receive epidurals.

The relief-effect had been waning anyway, since August of 2021. 

A few months back I said to Dr. Neurologist, "The epidurals and trigger points aren't working as well."

Dr. N: "That's not good."
Me: "What do we do if they stop working?"
Dr. N, in his American-Swedish accent, answered, "I don't know." *pause* "But we're not gonna think about that right now." 

That was then.

This is now. 

My weeks of Dantesque hell are over. 

I can no longer receive epidurals.

I landed in the hospital for three nights: April 28, 29, 30. 

Emergency Room Doc after tests and CT scan: 

"Two good-sized blood clots. One in each lung." 

*pause*
"It's good you came in. These are the fatal kind..."

Hubby and I were shocked, to say the least.

I think the scariest part was how quiet it was. 
I had no pain. 

For about the prior week, off and on, I'd had more dizziness and shortness of breath and fatigue than I normally would, but these are symptoms I have anyway that come and go in duration and severity with polyradiculitis-on-steroids. 

The straw on the camel's back that led me to the doctor on Thursday, 4/28/22, one day after I turned 63, was my high pulse rate. That is not one of my 'normal' symptoms. I had discovered it was higher than normal on Monday but was taking a monitor-and-observe approach because sometimes I get weird symptoms that seem to just disappear.

I've owned and used an oximeter since at least 2014ish. On 4/28 around 2:40 PM, my pulse went up to 144 as I exhaustedly loaded a bike into the back of Sir Edward Ford Explorer as part of our prep for Hubby's and my annual Florida cycling trip; we were supposed to leave the next day. 

A pulse rate of 144 while loading a bike is not normal for anybody. 

Besides the good news that I went to my primary care doctor (who just happened to have an opening at 3:30 PM) who checked me out and sent me to the ER (stating: "Do not pass go. Do not go to Florida. Do not go home and think about this. Go directly to the ER."), the other good news, which was discovered within an hourish or so of the clots, was/is that ... my heart is in good shape. (Echocardiograms are fascinating. Swoosh. Swoosh. Click. Hum.)

My weeks of Dantesque hell are over. 

I can no longer receive epidurals.

Since I'm now and for the foreseeable future on a blood thinner, the side-effects risks of epidurals are too high compared to my relief-benefits. (Today, my doctor changed the blood-thinner drug I've been on since 4/29. Apparently, I developed the rare side effect of insane insomnia, so we are trying a different drug.) I can still receive trigger point injections (cervical and lumbar), but epidurals have typically given longer and more significant relief. Currently I'm somewhat injection-shy because they haven't been working as well, and they are not without side effects. 

Evidence indicates that the clots are gone, or well on their way to gone. My blood pressure and pulse are much more normal, almost completely normal.

Because I had a blood clot once before (in my left calf, in 2008 after my first hip replacement surgery) and because the recent clots were so "quiet," I'll need to stay on a blood thinner probably for life. Blood thinners do not dissolve clots; the body dissolves the clots. The blood thinner helps keep clots from coagulating, keeps them from picking up clot-stuff inside blood vessels, like a snowball in motion collecting more flakes as it rolls along.

My weeks of Dantesque hell are over. 

I can no longer receive epidurals.

I'm currently in Week 9 of my current, #38, 12-week Dantesque-epidural cycle.

At least for now, there will be no Round #39.

I've lived Weeks 10 thru 12 thirty-seven times, but not without the hope-of-relief that awaits at the end of Week 12 after I receive my lumbar epidural. I've posted multiple blogs on toss & ripple trying to describe how dreadful Week 12 is; I have never been able to find sufficient words to describe that hell-week. The symptoms of fatigue and weakness and slowness are so extreme; the pain and tenderness are low-level, all through my sinews. Weeks 10 and 11 aren't so happy either. 

As I approach Week 10, I feel I'm entering, with eyes wide open, the valley of the shadow of death.

But not literal death, or even figurative.
But definitely a narrow path in a valley, between looming rocky cliffs that cast their shadows into the path.

The "valley" is actually more of a ravine.

I look so tiny on that long, narrow, winding path.

 
How will I fare through the shadows? 

Will I come out of the valley-ravine of shadows? 

Or will I need to learn to adapt?

If adapting it be, will I find pockets of hope, pockets of sunshine, and discover the rare and awesome beauty of the shadows...their forms and shapes and reflections?

I've always been good at finding silver linings...

So, I'm now on a different path.
My medical and wellness team and I have a plan. 

I do my work and my team is working their specific roles with me, listening and guiding and discussing as needed. 

How things will turn out is yet to be seen. 

But it is going to be quite a trek.

Hubby's with me all the way. 

I have had to (again) step back from 2D and 3D social life. 

I plain old don't have the physical, cognitive, and emotional energy to engage very much. 

(I've also disabled the comment option on my blog. I don't get many comments, but it's one less thing to babysit, so to speak.)

When I said to my functional medicine doctor, "I'm in a new chapter," he replied, "No, I think you're in a new book."

Currently, due to my nerve damage symptoms and not getting my regular relief from my lumbar epidural on 4/14 nor from my cervical spine injections on 5/24, I'm not able to bike outside much. I don't have the energy spark it takes to do the prep and after-work of a bike outing. I've gotten in two outside rides since April 23. I'm trying to ride my indoor trainer a few times a week. 

~*~

Monday, 6/13/22:

Below is a pic of a drawing I finished last night, Sunday 6/12/22.

In between the rocky cliffs, a path goes up the middle of the Valley-ravine of Shadows. 

The Trek: Valley-ravine of Shadows

I'm at the bottom of the drawing, on the trail, wearing a hat and headlamp, with my trekking poles, hiking up the trail which goes all the way to the top end of the page (though it's kinda hard to see the very end of the trail).

Today, Monday 6/13, begins Week 10, which is depicted at the bottom of the drawing. The top of the page is the end of Week 12, Monday, 7/04...

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Since April 29th I've started drawing using a technique called neurographic art. Most of my pics are black-and-white and are drawn in my regular journal. But I've drawn a couple in my mind-body sketch journal, and I colored them. I used color pencils....

Into the deep....

The conversation: all systems working...

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