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What Can You Do?

If you know me, you are keenly aware of my love for my back yard.

In March of 2023 my efforts to create a Zen-like backyard living space reached it’s zenith when I built a pergola over the back porch. Designed to replicate thee back patio of my wife’s childhood, it protects us from the rain and amplifies each drop on the fiberglass, corrugated roofing. The gutter and rain chain combined with the beautifully made Adirondack chairs (Thank you, Joe!), and the potted plants, make it a space that is the envy of all.

This suburban oasis also demarcates my last project before Dysautonomia became a more dominant force in my life. It was this project that tossed a more healthy body into dysfunction. And every day I enjoy it, I’m reminded of what I could do, and what I can’t do.

Climbing up and down a ladder, spending hours on my knees driving screws and securing coverings activated a flair of osteoarthritis (AO) in my left knee, making it extremely painful to walk or climb stairs.

What I didn’t know at the time, and what new research is starting to show, is that AO and Dysautonomia are connected!. I had no idea at the time, but this was the start of my debilitating condition that would continue to today.

The connection still does not seem obvious to me, but knowing this and experiencing flairs that impact my knees as well as the ringing in my ears, the dizziness and the fatigue, serves as a reminder to care for myself and all my systems.

What’s your story? Do you suffer from arthritis? Do you have chronic pain? Do you know when a storm front is coming because your fingers, toes, ankles or knees act as barometric gauges?

I’d love to hear your own story!

 

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Finding the Calm

A quiet Sunday morning on the Austin’s Acre back porch is just what was needed.

Last week I wrote about trying some new things that can add joy to your life as you drift through Dysautonomia…or any chronic condition. One suggestion included the use of meditation.

While this is helpful to me, it might not be everyone’s cup of tea. Focused breathing might be distracting, rather than healing. Continue reading “Finding the Calm”

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Party Time

Photobooth shenanigans. Office Christmas Party, circa 2017.

A few years ago I was part of a management team that worked hard. We and our 100 employees helped a major pharmaceutical company bring cancer treatments to the market that saved lives across the globe. It was not easy work, but certainly  rewarding.

Perhaps because of the daily head’s down focus of the work we did, we also learned that playing hard was just as important. Continue reading “Party Time”

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You’re Full of S*}T

There’s been real progress in my health over the last four weeks. Energy is returning. My legs aren’t numb unless I stand too long. I’ve not felt like I’m riding a horse in more than two weeks.

AND YET…the ever-changing features of dysautonomia keep me ever-vigilant, always on the lookout for something new on which to focus. Continue reading “You’re Full of S*}T”

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A Different Model

One of the wonderful discoveries on this Drifting through Dysautonomia is the amazing Cleveland Clinic.

Doctors work on a salary basis, rather than being paid by the number of patients they see in a day and the number of tests they order. This means that I have received excellent, patient-focused care without any urgency to leave the room or any additional, unnecessary medical procedures and expense.

Continue reading “A Different Model”

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Eating Mediterranean

It’s day One of 365. If you’ve found this blog, either because you have Dysautonomia, or chronic pain, are curious about Zone 2 exercise routines, or anti-inflammatory diets, you are more than welcome.  The goal of the next 364 days is to journey together learning about healthy food, increased activity and hopefully a return to a life of wellness.

Here’s the update for today:

I walked 5 minutes and got my heart rate up to 100 beats per minute. That’s step one of the journey. We’ll repeat this two more times this week. More about this later.

As for my diet, I’ve been VERY Mediterranean; I’ve eaten oysters, pita, white fish, asparagus, olives, hummus, black rice, mixed fruit and roasted tomatoes. Smaller meals eaten more often is part of the plan.

I only needed 4 hours of nap today…so I can report confidently that the plan hasn’t worked yet. We might need more time.

Let’s see what tomorrow brings, shall we?

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Just an Idea

It’s Wednesday, April 30, 2024. I’ve never felt older. Perhaps, because I’ve actually never BEEN older.  Or…and stay with me here…the constellation of symptoms of my particular Dysautonomia have made me feel as if I’m a decrepit 80-year-old. I’ve been immobilized and discouraged for over a year. I’ve looked for answers. I’ve said prayers. I’ve visited doctors. And until yesterday, I didn’t have many answers. Okay. None. No answers. Zero.

But yesterday I met with a muscular neurology specialist at the Cleveland Clinic who confirmed my diagnosis and explained there are no quick fixes…or perhaps ANY fixes.  Oh sure, this  could be discouraging to any other octogenarian-to-be, but not for this cane-using, walking (okay, limping) wounded.

Doc (we’re not on a first name basis yet) says that I have three possible options that might, could possibly, maybe, perhaps, conceivably make a difference within a year.  Or not.

First, I should consume a anti-inflammatory diet. Think “Mediterranean”. In fact, I’m pretty sure he said something about traveling to the Mediterranean (Italy, Greece, perhaps) and eating the food. Unfortunately, I’m not sure my insurance covers airline tickets and hotel rooms.

Second, exercise using the Zone method and sticking with Zone 2 (whatever that is).

Third, consider adding a medication to reduce my debilitating fatigue and clear up that pesky brain fog that’s plagued me for the last 14 months. Or was it 12 months? 10 months? Oh, who cares?

Again, these are POSSIBLE remedies. These activities MIGHT bring about change. Fat and Lazy replaced by Greek Yogurt and Long Hikes COULD reduce symptoms, increase energy, and make for a more normal life.

The next 365 days of pita bread and olives, leisurely strolls and pharmaceuticals will either make a difference or not. What to come along for the walk?

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Ride ‘Em, Cowboy!

Riding in the Rocky Mountains.

As the year has progressed, one of the most consistent Dysautonomia symptoms has been the feeling that I’ve just ridden a horse for the last 4 hours.

My legs feel “spread” and weak, whether I’m walking, standing or sitting. It’s uncomfortable and, to be honest, a little annoying.

We had horses when I was younger and I loved riding, so I know the feeling. Horses are a gift with unique personalities. Blaze was a quarter horse, spirited and feisty. I loved him and he was considered my horse. Sheba was a trained show horse who could jump obstacles, trot and prance with grace and style. She was more of my brother’s mount.

And while I loved everything about the horses, from their soft, searching muzzles, to their earthy aroma, to the feel of their coats as we brushed them after a ride through the woods, being thrown because of a imagined spook or a flock of horse flies or a sudden turn was an experience I could live without.

My father, always one for sage advice, would yell from the barn, “Get back on the horse that threw you!” Helpful words and a scary proposition.

As the symptoms of Dysautonomia play out in my life, this familiar phrase from my childhood rings more true with each passing day! The feeling of riding doesn’t equate to the bow-legged cowboy stance of movies. My legs remain straight. I don’t stride up Main Street in front of emptying saloons looking for a gun fight. But it feels like I could. I know the feeling and wish it would go away.

What’s a symptom you experience in your life that doesn’t go away? How do you deal with it? How do you “Get back on the horse”?

I’m interested to hear your story.

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Hum Along

Perhaps one of the most annoying symptoms I’ve experienced is the constant “ringing” in my ears. However, in my case, it’s less ringing and more of a buzzing or humming. As the late summer days progressed and we could sleep with our windows open, I found that the buzzing was very similar to the sound of Cicadas singing their courtship songs.

It is quite annoying! Continue reading “Hum Along”