Tag: Addison’s Disease

When Can I Be Awesome?
celebration · challenge · femalestrength · running

When Can I Be Awesome?

Mina2 Comments

A few weeks ago, I ran rim to rim in the Grand Canyon. The effort was a moment to remind myself of the strength of my spirit after a period of enormous loss, chaos and instability, including health setbacks. As I ran from the night into the dazzling first drops of sun gilding the tops of the cliffs, the dawning day called me back in to myself. 

My youngest brother, Noah, proposed the adventure. His goal was to run rim to rim to rim (R3)—across the canyon and back again. My goal was rim to rim. I would accompany him for the first half of his effort.

It had been more than a decade since my last ultra run. Yes, I know, technically, rim to rim is not ultra, because it is not longer than a marathon. That said, those 21 miles are challenging. I underprepared. By a lot. One month out, I broke my toe.  I wasn’t sure I could even join my brother for the first steps. A few days before we were set to leave, I was fretting about my lack of training, when the universe delivered me a lightning bolt of clarity. You know how to do this. In that moment, I felt a fizz of recognition, the running was the least of it. To be prepared was to believe in myself. I could give the rest over to the universe. I felt a sudden sense of being anchored. I know how to do this. I’ve done ultra runs before. The experience is inscribed in my cells. Yes, in the past I have always trained. A lot. And that wasn’t an option this time, so I will run with what I do have. My knowing.

Don’t get me wrong. I didn’t suddenly think that I had the whole thing in the bag, and it would all be a dawdle. Not at all. Rather, it was an acceptance that I might well turn around and that would be okay, combined with a confidence that I could do it, if all else aligned (weather, health & sleep, being the three primary things that needed to be in alignment).

We started running at 4 a.m. Descending 4500 feet. In the pitch dark. For more than 2 hours.

At one point, my headlamp caught a lone, bare tree, which looked like a staging of Samuel Beckett’s play, Waiting for Godot.  I thought about Didi and Gogo, near the end of the play, contemplating whether to hang themselves from the scrawny tree. A current of energy passed through me and a voice in my head said, I want to live. I want to stop waiting for something external to happen, to give me a reason. Life is happening now. This is it.

I relaxed into the pleasure of the run. We reached the bottom in the dark and began to make our way across. I’ve been down into the canyon twice before and come right back up. I had never traversed the canyon floor before. Never been hugged by the canyon walls, as I passed through the sometimes narrow, winding passage to the far rim. The light began to seep into the canyon, long before the first sunshine splashed over the highest rock faces. The North Rim loomed 5000 feet above. It didn’t seem possible that there was a trail leading up the sheer walls. And yet, there it was. Sometimes skinny and precipitous. Sometimes breathlessly steep. With views to astonish.

Tears prickled as I reached the top after 7 grueling hours. I was overcome with the full body pleasure of finishing. Despite all. I’m awesome. I thought. For a moment. Only to watch most runners who came after me turn around (as my brother did) and run back again to the South Rim.

I was so proud of my brother for achieving his desired goal. And, at the same time, all the runners out there covering twice as much distance as me that day made me question my own sense of accomplishment. I only did … I made a halfway effort. In our world of increasingly extreme efforts, in our world where people are routinely pushing their bodies to the very edge of their human limits, what counts? What is enough? What am I allowed to be proud of? Wait a minute, who is doing this allowing? Why can’t I allow myself to be awesome?

And then on the Thursday after the Grand Canyon, I read these words from David Whyte (from his book Consolations. Words I had read before, which took on new resonance: “…taking a new step always begins from the central foundational core of the body, a body we have neglected, beginning well means seating ourselves in the body again, catching up with ourselves and the person we have become since last we tried to begin …”  I felt my first steps down the South Kaibab trail again and the intensity of everything that moment contained. The flood of memories of other physical challenges, like this run, that I’ve done in the past. All the ways in which my life and how I see myself have changed since then. All the doubts I was carrying into the canyon about my own capacity. Would my Addison’s Disease be a factor? The run was an opportunity to catch up with myself and the person I have become since last I tried to begin. I discovered a woman who is doing better than she thought. The light of resilience is seeping into her cells. Soon, the only-seemingly-insurmountable cliffs ahead will be painted gold and the trail will show itself. Step by step.

Rewriting the Stories I Tell Myself
fitness

Rewriting the Stories I Tell Myself

Mina3 Comments

I tell myself stories all day long. Stories to soothe. Stories to motivate. Stories to console. Stories to provoke fear and anxiety. Stories of success. Stories of failure. And, as hard as it is for me to believe at times, I can rewrite any of those stories at any time.

Here’s one.  It is a story that’s ostensibly about mountain biking. And, as with all our stories, it is a story I’m telling myself about myself. Where I used to mountain bike in the California Sierras, most of the trails l rode were longtime friends. I knew exactly where the tricky spots were. I assessed my ride by how many times I touched a foot on the ground, how long I stayed on the bike during a treacherous or super steep stretch and how many times I got off the bike. I told myself stories about my focus and strength and resilience, which were not always supportive.

This summer I was in new terrain, as I am with so much of my life in this moment. The mountain bike trails were unfamiliar and challenging in different ways, a lot more slippery giant tree roots, for example. I was off my bike significantly more often than I used to be on my longtime trails. At first, the story I was telling myself went like this: You’ve lost your mojo and finesse, maybe your fitness, too. You are too old to mountain bike. That I had a sprained ankle didn’t help, though my ankle was surprisingly cooperative when I was riding and even when I was hopping off to walk the bike for steep uphill stretches, a water feature or a tree root festival.

Then one day, as I was walking my bike through difficult terrain, berating myself for my weakness, lack of talent and age, I suddenly thought. No. This is not the story!  I decided on the spot to rewrite the narrative. To tell myself a new story. Wow, Mina. Impressive transitions getting on and off the bike with such speed and grace. Never mind all the effort of the hopping off and on, even carrying the bike over some obstacles. I didn’t even stop there with my new version. All this on and off requires more strength and agility than just riding. Great functional fitness benefits, especially as you age. Rockstar.  

The story of my shortcomings morphed into a story of grace and resilience, of healthy aging. Was I lying to myself with the new story? No. The stories are nothing but interpretations of these neutral facts: I was hopping on and off my bike on a mountain trail. The story I tell myself to make meaning of that experience is up to me, as it is with every story I tell myself about what’s happening in my life.

My life could benefit from any number of rewrites these days. Without becoming delusional, I want to tell the stories that support me into the future, rather than the stories that mire me in sadness and fear. I’m not talking about stories that negate what is. I mean stories that help me make sense of what’s happened, without stopping me cold in my tracks.

Here’s an example.

Version 1 of The Story of My Addison’s Disease: You failed to manage your stress. If you had been better able to manage the fear, sadness and distress of your relationship breakdown (or if you’d not failed at your relationship in the first place), and, also, if you had better managed the grief after the loss of your mother, your cat and your home, plus a suddenly financially precarious situation, then you wouldn’t have this disease. You brought this on yourself. You have only yourself to blame.

Can you hear the brakes squealing in my life, as I run aground in the quagmire of depression and hopelessness this version of the story engenders?

Or there’s Version 2 of The Story of My Addison’s Disease: Shit happens. And, in your case, a lot of shit happened all at once. Also, way back in 2016 your potassium was already elevated and your egfr was low, but after seeing a kidney doc, the conclusion was that you were in excellent health. When those pre-existing fragilities, along with some viral load that is also common in Addison’s Disease, then combined with the perfect storm of stressors (which any normal person would have found difficult to live through), they triggered the onset of the Addison’s. And how amazingly lucky are you that it wasn’t worse? That you are alive. That, even as much as you’d like to heal and get off your medication (a work in progress), the medication works beautifully, and you have the energy to be your same old exuberant and enthusiastic self. Hallelujah.   

Version 2 is a story to dance to. I need dancing way more than I need brakes. I need to celebrate getting off my mountain bike to walk through tough obstacles, not criticize myself. Also, mountain biking has always felt like dancing on a bike, so I want to open space for the full pleasure of that experience. Side note: I’m loving that the women mountain bikers at the Olympics were so huggy at the end of their race. That’s what dancing on a bike can do for you.

My goal: More dancing (and more hugs) and less blaming in the stories I tell myself about myself.

Notes from the Healing Rollercoaster
health · illness

Notes from the Healing Rollercoaster

Mina4 Comments

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.  

How Cold Water Helps Me Cope
fitness

How Cold Water Helps Me Cope

Mina2 Comments

At summer camp, I was notorious for taking the longest to get into the frigid lake for swimming lessons. Once the camp director had to yell at me to get me in the water for a swim test (I did pass and get my red cross badge). Over the years … nothing has changed. I have honed the art of slow immersion—one toe at a time, one ankle at a time, light splashes on my arms and face—often only to retreat out of the water before fully plunging in. No matter how many people said to me, “You’ll feel great once you’ve plunged,” I never found this encouragement a motivation. I know how great I can feel after a cold plunge. I just can’t bring myself to do it. You don’t need to tell me that doesn’t make sense. I know.

Until a few days ago.

I went to a spa for the afternoon with a friend. We followed the guidelines to the letter. 15 minutes in the sauna (or steam room, or hot pool), followed by a brief cold plunge, then a period of rest (in my case, with Marilynne Robinson’s novel Jack, which I’m loving). Repeat. And again. And again. For the first time. Ever. In my life. I walked right into the cold plunge. Not one moment of hesitation. Full immersion. Pause for a few breaths underwater and then climb out an unhurried pace.

I know that there are many stalwart winter swimmers and WimHoffers who read and write for this blog, so I feel some trepidation sharing this as a personal transformation. Yet, for me it is the kind of change that makes me pause and look around, wondering, “What happened? Am I me?” The seasoned cold wateristas may be wondering what rock I’ve been hiding under to not already be where I’m barely arriving. All I can say is, I’m late to the party and why I’ve arrived at this particular time is still a bit of a mystery.  

Here are three personal theories:

  1. In the last two months, I’ve been ending most of my showers with 100% cold water. At first, I could feel my body curling up like a hedgehog against the cold. Over time, I’ve become bolder. Face. Head. Heart. Back. Making sure to attend to each body part. I’m such a pro now that in NYC, the cold doesn’t get as cold as I’d like. When I was in Canmore or when I’m visiting friends in VT, the water is glacial. Such invigoration. And preparation (increasing resistance) for those cold plunges I did a few days ago, which are next level (for me).
  2. Another possible reason: I’ve been in the process of changing a host of other things in my life. In particular, for example, my diet. As I search out low potassium foods, and replace my favourite foods (Avocados. Dark chocolate. Broccoli. So Many Leafy Greens. Sweet Potatoes. Salmon. Mackerel. To name a very few.) with less favoured foods. I am teaching myself to enjoy flavours that I’d lost the taste for, or never had—Asparagus, Parsnip, Green Beans, Shrimp, Clams. I am teaching myself to be different. Maybe my body is responding with being different about cold water?   
  3. A final reason (and you’ll notice my reasons are getting increasingly distant from the practical & physical conditioning I’ve mentioned above) is that my body knows it needs the shock to reset in this period of greater stress than I’ve ever before experienced in my life. Sometimes, as the cold water pours over me and I feel the edge of an ice cream headache (which does not come, interestingly), I can almost hear my adrenal glands stirring, flexing, considering whether they will begin producing aldosterone again (the hormone lacking with Addison’s Disease, which enables the body to process and get rid of potassium—I wrote about my diagnosis here). Other time, the awareness is more around the general need for a reset in my nervous system. I may have woken in the morning from some complicated and unsettling dream that mirrors the extreme distress of my divorce-in-process and which I have not quite succeeded in flushing out of my system during my workout. The icy flow over my body startles me into the here and now, offering perspective and, dare I say, hope. In other words, my body knows what it needs (cold water!) and my slow immersions and arms crossed firmly across my chest with shoulders hunched against the cold no longer suits my body. The cold has been transformed into a coping strategy. I’ll take it.

Of course, all this theorizing could fall overboard, if I tried winter swimming. For now, I’m not going to. I don’t need more tests of will and toughness. I have enough of those already. What I need above all right now is any reassurance that I will make it through this moment. So, I’m giving myself a high five for my new tolerance to cold water and adding it to my resources.