I guess you’ve noticed the changes on my blog. I’ve updated the look and navigation to reflect my new podcast being launched next week, on October 1, 2023. That was my dad’s birthday. He’s gone now, died from rupture of his heart walls, at least that’s how the doctor explained it when they called me from New Jersey.
October 1st is also the day to plant garlic for next year’s crop. At least get out there to clear the area of overgrown weeds. I have shallots to plant as well and I hope double the bulbs that I had last fall to plant.
Marfan Syndrome
When I first learned of Marfan Syndrome I immediately thought of my dad, he was was 5’9” tall which isn’t really tall but he had a slender build and long fingers which were great for playing piano. It was 1995 when I came across the information about Marfan Syndrome at the medical school where I worked. The department of pathology and microbiology created their own curriculum as provided by the doctors in the various disciplines that ultimately teach their speciality to the second year medical students, pharmacology and perfusionist students. It was my job to assemble all the materials from these various doctors and format the material into a text book that was printed in-house. This was all before I had heard of Ehlers Danlos Syndrome (EDS) and long before I realized I had ultimately inherited his genes for this. I have good reason to believe it is vEDS in our family, that is the vascular version.
The Lone Zebra
The podcast is a weekly, 30 minute show called, “The Lone Zebra” and I’ll share my victories and struggles living with Mast Cell Activation Syndrome (MCAS), Ehlers Danlos Syndrome (EDS) and Post Orthopedic Tachycardia Syndrome (POTS), the “trifecta” it’s often called. Doctors dismiss patients like me until things get so bad I nearly die, then they have to pay attention just long enough to avoid lawsuits. I have a story about that too…sometime I’ll tell you about it but not now.
I’ll also be sharing a Daily Devotional from a book written by Sara Daigle. I’ll share a link in the show notes along with any other books, websites, videos or other resources to help anyone else looking for answers to their “mysterious” illness.
Each week I like to feature a new song, either contemporary Christian or easy listening thematic music to enhance your listening experience.
Currently Recooperating
I’m beginning Week 2 post extraction of my remaining 8 upper teeth and beginning a new challenge with upper dentures. Let’s just say I’m ready for Phase 2, the part where you start feeling good and are glad you did what you did. I had to, one of the 8 teeth started crumbling and made me admit it had to be done and to get the ball rolling. The dentures took about six weeks to make so it’s not a quick and easy process…not by any means. The week before my oral surgery that tooth literally broke off and only the base remained. It is what it is.
Although I’m not ready to embrace fall just yet with summer still fresh in my mind. I thought you might enjoy a glimpse of my garden in these videos I did while practicing mindfulness and living in the moment. There is such a peace that comes with slowing down and smelling the roses.
Midsummer, Part 1
Midsummer, Part 2
The leaves although mostly still green are starting to change here in northern Michigan and the colors promise to be awesome this year. Today is overcast and windy, a good day to make a cup of tea, catch up with a post and stay in touch and maybe take a cat nap or two. What are you doing today?
Today’s featured photo by Bibhash (Polygon.Cafe) Banerjee on Unsplash