health · illness

Notes from the Healing Rollercoaster

I am on a healing journey (as many of you already know from my posts here and here). Or, if I can describe my current experience with more accuracy—I’m on a healing rollercoaster. Less than a year ago, I was diagnosed with Addison’s Disease. The short of that diagnosis is that I’m on 3x a day medication and I have to eat a low potassium diet, aka a pleasure deprivation regime. To keep hope alive, I have engaged with a functional medicine program to explore alternative options to healing my disease, which my endocrinologist says cannot be healed. Ever.

Right now. I need to believe otherwise.  

There are a number of challenging questions that pop up as I embark on this alternative (functional) medicine undertaking:

  1. How do I define healing?
  2. Does being healed equal being off my medication?
  3. What about supplements? Do they count as medication?  
  4. Is being healed coming to a place of acceptance around taking my medication? After all, my energy is good and I am able to do all the activities I want with my enthusiastic effort levels of old. The one thing I can’t do—eat high potassium foods.
  5. Is being healed eating avocado toast and chocolate whenever and in whatever quantities I want? Even if I’m still on medication?  
  6. What is the measure or metric of being healed? What is the function in functional medicine?
  7. Or (the big or) is being healed a state of mind?

As you can no doubt discern from these contemplations, I have not yet accepted that Addison’s Disease is going to be a lifetime companion. Nor do I have the capacity yet to see this disease as a golden opportunity to explore my patience and acceptance. Addison’s has afflicted me, it is not a cascade of liquid sunshine, showering my life with unexpected gifts. While I am no longer fighting the disease, the way I did at the beginning, not wanting to believe I even needed the medication and being uncooperative on that front, I still can’t find solid ground. Which brings me hard up against that last question.

Is being healed a state of mind?

This question is particularly nagging. One of the elements of my alternative (functional) healing program is a brain rewiring technique, by which I work through negative thought loops on a daily basis, cultivating neuroplasticity with a series of movements paired with scripted acknowledgments of my current condition and visualizations of my future. The promise is that as I rewire my brain, my body will follow.

I’m torn between the part of me that thinks the practice is kooky, possibly even hokum and the part of me that knows that the practice can only work if I throw myself into it wholeheartedly. That part also knows (and research shows that) our bodymind does not necessarily know the difference between a role we play and reality. So much so that playing the role of believing in the practice may be enough for the practice to work, if I play the role of engaging with wholeheartedness. As I do the movements and speak the script with the conviction of the role I’m playing, the change will begin to happen. This will lead me to believe in the practice, amping up my wholeheartedness. More change will happen, deepening my belief and engagement and so on.

A virtuous cycle. Which risks sounding as loopy to some of you, as it does to that part of me, who I mentioned a moment ago, who is on the lookout for snake oil sales people.

I started less than a week ago on the brain rewiring practice. And two weeks ago, I embarked on the supplement regime and using a device that emits far infrared to boost stem cell production and reduce inflammation.  

Here’s how everything is going so far … during the first two weeks of supplements and far infrared therapy, I swung between the conviction that I am on the road to healing, which was boosted by the fact that my tweaky hamstring healed in record time (for which I give credit to the far infrared) and the conviction that I’m a fool who just wasted money on a functional medicine guide to cure a hamstring injury that would have healed in a few months anyway. In other words, I was high and then I was low and then I was high and then … After two days of the brain training, I felt a full body thrill of optimism. That was last Thursday.

Last Friday, as I was setting out for a hike, I got the results of a blood test I’d taken the day before (so, for perspective, less than two weeks into my new supplement and far infrared regime and two days into brain training). The results were, at first glance, not what I’d hoped. My potassium was back up to the highest end of normal, despite medication, diet, supplements, far infrared, and brain training. All the everything. Yes, I know, I’ve barely started the new regime, what did I expect? Still, I expected.

I was devastated and cried sporadically while hiking, when I wasn’t furious with the world and myself. Overcome by hopelessness and self-pity. Why does nothing ever go right for me? Which then plunged me into the steeper drop of, why am I never the right person? And so on. All of which was a nauseatingly precipitous drop from my I’ve-started-brain-training-and-I’m-going-to-heal-myself-with-my-mind optimism from the day before.  

Later, looking more closely at the results with my endocrinologist and my FM guide, there was actually more good news than bad. My cortisol has gone up to “very normal, even high,” as my endocrinologist said. My ACTH, the hormone which stimulates the release of cortisol into our system, was down into normal mid-range, the lowest it’s been in at least a year. A year ago, my ACTH was at 15x the current level. My body was screaming at the top of its lungs for more cortisol production. To no avail. This normalization of my cortisol production, according to my FM guide, is, at least partly, thanks to the licorice root I’ve started taking. Plus, both DHEA and Vitamin D, which were concerns for my FM guide and are part of my new regime, are now in healthy ranges.

I took the weekend off to put myself back together after my vertiginous mood plunge, followed by the upswing of the closer look. Optimism returns. Cautiously. And then yesterday and today with more vigor, as I renew my commitment to my brain training.

Photo of rollercoaster by Priscilla Du Preez 🇨🇦 on Unsplash

The questions I listed earlier continue to rattle around. I have no idea of the answers. And I know (really, I do) that it’s too early to have any idea if anything is working. When I signed on with the FM guide, I strapped myself into a rollercoaster. I don’t know how long the ride will last. I can’t see the full extent of its climbs and plunges. I could get off, but then I’d probably just be on a different rollercoaster and this one comes with a dose of hope. I’m choosing to keep my seat belt on.

In the meantime, out for a ride this morning, I indulged in the enormous pleasure of setting my gear at a harder level than usual for the uphills and feeling into the power of my legs and the joy of movement.  

ADHD · aging · Dancing · fitness

Team Hennebury & the ‘Ageless Grace’ Class

Ages ago, I wrote about how much fun I had being gloriously awful at a Nia dance class with my friend Elaine.

I’ve done Nia lots of times since and I’m still a pretty goofy dancer but I have a grand time thanks to the atmosphere that Elaine creates.

Since I trust Elaine to ease me into new things to be gloriously awful at, last week, I checked out her drop-in class for a program called Ageless Grace.

image description: a black and white photo of Elaine and a group of seated seniors with their arms stretched out to their sides.
I was so caught up in our class that I forgot to take photos but here’s Elaine leading a different group at an indoor class. image description: a black and white photo of Elaine and a group of seated seniors with their arms stretched out to their sides.

I had no idea how hard it is to draw a circle with your left pinkie while drawing a triangle with your right big toe.

And how relaxing it is to pretend to be pulling taffy, in all directions, in time to some music.

And I wasn’t alone in this fun. My Mom, my sister Denise, and 27 other people joined Elaine and grinned, laughed, and sang our way through a series of exercises designed to encourage neuroplasticity and fitness.

And while I can’t exactly judge if it did those things for us, I can definitely tell you that it encouraged fun.

The target demographic for the class is seniors but it’s useful for anyone who is interested in challenging their brain. (My almost-48-year-old-ADHD-brain loved it.)*

All of the exercises are designed to be done in a chair so the participants can focus on the movements instead of worrying about falls.

Denise and I stood for the whole thing because we both have body quirks that are exacerbated by sitting. It was tricky but trying to keep our balance while doing dexterity/mind-body exercises meant we got to laugh at ourselves a little more than everyone else. (Pretty sure our Mom got in an extra snicker or two at our expense, too.)

Image description: A ‘selfie’ style photo of Christine, Denise, and Carol-ann (a.k.a. Mom.)  They are all wearing sunglasses, Denise and Carol-ann are smiling and Christine is smirking.
Here we are after the class, I really meant to smile but I missed! Image description: A ‘selfie’ style photo of Christine, Denise, and Carol-ann (a.k.a. Mom) on a sunny day. They are all wearing sunglasses, Denise and Carol-ann are smiling and Christine is smirking.

So, the long and the short of it, is that I am just as gloriously awful at the Ageless Grace exercises as I am at Nia dancing. And I had just as much fun making mistakes**the whole time.

And as a bonus, that pretend-taffy exercise loosened up some of the muscles in my upper back that plague me and I’ve been doing it a few times a day ever since.

PS – Just so you know, I have another sister but Angela couldn’t make it to the class!

*In fact, Elaine and I will be experimenting to see if my ADHD brain likes certain exercises more than others. More on that later!

* *Don’t worry, Elaine, I know that the mistakes are the point and that it’s the effort that counts. You know that I’m all about that kind of thing – ⭐️