Invisible Disabilites | Food Wisdom Herbs Yoga: A Pursuit of Health & Happiness

In March of this year, I was suddenly ill with a worsening chest pain over my heart. I was so debilitated I needed a handicap placard and was trying to figure out how to get a wheelchair to take me from my car to the cardiologist’s office, when things finally eased up a bit.

I had knew something had been going on for a while; I’d had signs of heart failure for over a year, but all normal tests. Then, ever since my covid booster, I had heart pain when I went up inclines. Now, I was in pain all the time, and unable to do any thing.

From the time I started complaining about the heart failure signs (shortness of breath, weight gain not in alignment with calories and pitting edema), it took a long time to get a diagnosis of Coronary Microvascular Disorders: 30 months, to be exact. I did all the tests, until finally, someone mentioned coronary microvascular issues, and I got scheduled for the diagnostic for that. Turns out, that is what was going on.

Coronary microvascular issues, are often overlooked and under-diagnosed causes of heart pain. (I almost didn’t do the test because every other test had come back normal!) Often women have them, and their pain is written off. I was lucky to have a great heart specialist, Dr. Ziada, at the Cleveland Clinic.

I was put on medication and improved dramatically. I knew I had possibly had limited time to do anything really active so I decided to walk El Camino Ingles, a pilgrimage trail in Spain, and to raise awareness of these not so uncommon Disorders.

Today, Day 9 of my walk, I realized my personal purpose for this pilgrimage.

After first light, daybreak and sunrise, it suddenly came to me – what the point of my pilgrimage is.

I had just done several km/miles of long hills. I thought of the Karma post (last Blog). I thought of how I was actually able to do these hills, these km/miles, these days. I realized I was feeling good; better and better. It seems like either no exercise or a lot of exercise (like this) suits my heart. That recognition that I was feeling better and better, made me break down, a bit, in gratitude. I didn’t think I would be able to do this walk a month ago.

That was when I realized that this journey has given me the belief that it may be possible for me to live more than a few months. (I was thinking 2 – 24 max, depending on how poorly my heart was functioning.)

Previously, my hopes were that I could do something to make a difference while I am vigorous. Do good in my life, my daughter’s life, my husband’s life. God knows, I am trying to help other people with heart pain by raising awareness of Coronary Microvascular Disorders (CMD). I really want to help others.

For Seven months, I’ve known the likely outcomes of my disorders: (75% Hfpef patients dead in 5 years… I am already about 3 years in.) Seven months of learning to accept what ever comes…like death. It’s all actually been great stuff and I think I have done a good job. I don’t like the possibility, but I am no longer upset about the possiblity.

In those seven months, I’ve spent a good deal of time preparing to leave; updating my will, counseling my family and friends, counseling for myself. I am very practical and my job has me steep in the reality of death in a very practical way. I’d rather know the worst/most common case, and be surprised and grateful for any and everything else.

And that is all good… But I want my family to not lose me.. I want that even more than I want me to not lose me.

I don’t much like being a PollyAnna nor a Eeyore, but I do like belief and possibility. Suddenly, it seemed possible that I would get to see my daughter off to college next August.

I haven’t lived with that positive possibility since March this year.

I stood on the road and cried. (Seems like I do that a bit on this trip.) That is what this pilgrimage has given me. I believe I could be part of the 25% that live more than 5 years. That is huge. The belief is huge.

After a bit, I got myself together and walked on.

I want to go to a cathedral and sing, as that soothes me, but finding an open one that is also empty, well that is a challenge. The nearest one is almost 2 miles away, so I will just have to keep singing in tunnels, as I come across them in my hike.

Here are links to the video from the day, just after I start to realize I can live the rest of my life.

Here is a link to my YouTube channel Video #3 – explaining Coronary Microvascular Disorders and A GoFundMe page – 100% of funds will go to raise awareness of these conditions.