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!

 

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”

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”

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?

When Everything is Different

At some point this year, my life changed. It started as a gradual shift from being active, engaged, social to a version of myself that is fatigued, cane-using, doctor-visiting, discouraged.

What started as gradual, raged with a vengeance and all of the sudden, my life was different. The  sound of Cicadas buzzing in my ears is ever-present.  My ability to walk several miles was replaced with a struggle to make it to the end of the yard and back. Daily naps and early bedtimes paired with wobbly legs and a spinning sensation. These and many other symptoms are the new normal. 

All-in-all, not the way I wanted to enter my golden years.

Continue reading “When Everything is Different”