A different kind of "Trail Guide"...

My symptoms began in April 2011, in all my limbs and extremities. 

In May 2013, two years and eight doctors later, I received a correct diagnosis -- polyradiculitis, multiple nerve roots swollen at my spinal cord in my lumbar and cervical regions.

In January 2014 I began receiving steroid lumbar epidurals every 12 weeks. 

In 2015, I designed my first "Rally Sheet."

Every 12 weeks with magnets, I'd attach to my refrigerator, my one-page printed Rally Sheet for that round.

These helped encourage me until my next epidural.

In 2018, I changed the title from "Rally Sheet" to "Trail Guide."

But the trail wasn't a literal trail through the woods; it was a literal place of being and living with a rare disease and all its repercussions. 

The last Trail Guide I attached to my refrigerator read: 

April 14, 2022, thru July 4, 2022:  Round #38

My self-care is a fulltime job.

That is my reality.

My self-care is service to my family & society.

To my human & animal friends.

To Nature & Earth. 

As I care for my self, I care for others.

This is my potential with Earth, my gift for a more beautiful world.

Monitor my energy and push capacity.

Turtle power. Ground. Listen. 

Happy pace, hour to hour.

Move my physical being.

Consciously eat & intermittently fast.

Rest. Be with nature. Be with me. Be.

Notice flash feelings. Observe. No need to react or respond. 

Self-validate. Boundaries. Respect. Self-soothe. 

Allow joy. Allow grief. Allow gratitude. Allow loss.

Embrace it all... 

Live well...

I do not have to prove any thing to any one.

"At some point, everything's gonna go south on you & 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...." ~Mark Watney, space pirate

Countdown: 

Week 1: Begins M, 4/11/22 (Thur, 4/14: Epidural #38. Day adjusted for FL trip.)

Week 2: Begins M, 4/18/22 

Week 3: Begins M, 4/25/22 

Week 4: Begins M, 5/02/22 (Florida: 4/29 thru 5/07)

Week 5: Begins M, 5/09/22 (Black Mtn: 5/11 thru 5/13)

Week 6: Begins M, 5/16/22 

Week 7: Begins M, 5/23/22 (5/23, MON: TAKE BONIVA!  5/24, Tu: Cervical Trigger Pnt Injs, WS )

Week 8: Begins M, 6/06/22 

 

Week 9: Begins M, 6/13/22 

Week 10: Begins M, 6/20/22 

Week 11: Begins M, 6/27/22 

Week 12: Complete M, 7/04/22: Epidural #39 is 7/04 or 7/05. (7/03 or 7/04: TAKE BONIVA!)

Signed:  carol welch, ceo  ~ cyclist. explorer. overcomer. ~

Along with my refrigerator Trail Guide, I kept detailed notes in small notebooks, tracking symptoms and responses to interventions.  

I had no idea on April 11, 2022, that it would be my last Trail Guide. 

I never received Epidural #39. 

On April 28, 2022, two weeks after Epidural #38, I landed in the hospital for 3 nights with two good-sized blood clots, one in each lung. 

The ER doctor informed me, "It's good you came in. These are the deadly kind."

Because I was put on blood thinners, I had to give up my epidurals. 

I was terrified. 

Without the epidurals, how would my body and brain be able to stay at least partly functional?

Would I become bedridden? 

Then, the same week as my blood clots, my functional medicine doctor began offering low-level laser therapy, now known as photobiomodulation.

In July 2023, I purchased a laser for home use. 

I lasered daily - brain, jaws, upper arms, lower arms, wrists, hands, fingers, adrenals, lumbar and cervical nerve roots, upper back, lower back, thighs, knees, lower legs, ankles, feet, toes. 

The process took about 2-1/2 hours. 

Now in March 2026, I still laser daily, but not all those parts because I have received improvements, incremental but significant.

One of those very significant improvements? My jaws.

In January 2016, symptoms spread to my jaws. 

Since January 2026, my jaws have been pain free!

*knock-on-wood* 

In June 2016, we did discover an underlying cause: My 2008 artificial hip implant had been slowly drip-dripping, leaching cobalt and chromium. It was explanted and replaced in August 2016. But still, I needed the epidurals. Then came the blood clots, and I had to give up the epidurals.  

I no longer design Trial Guides every 12 weeks.

In 2023 I began a different kind of tracking with a graph paper composition book.

Every Sunday, using a ruler I draw columns and rows for the week ahead...