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. 

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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. 

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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.