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!

 

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”

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?

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?

A Grateful Heart

The truth is, I have one good day out of every 14. At least that’s what I’m calculating as I follow my symptoms and progress. One day every two weeks when I have energy, feel excited about work, family, life. The other 13 days are a mixed bag of napping, weak legs and fatigue. When I’m not feeling well, I really struggle. But when I’m feeling good, I am GREAT! 

Continue reading “A Grateful Heart”