Season Wrap Up

Looking back and moving forward

Greetings

It’s been awhile. I kept meaning to update but just haven’t. It’s been a good summer overall. I traveled to New Hampshire and New York City, spent time at the pool, saw The Lion King when it was playing in Kansas City, went to a Jon Batiste concert, and a Kansas City Symphony concert featuring Morgan Freeman’s Symphonic Blues Experience. Apparently it was the summer that I got to see famous people in person, haha. Morgan Freeman in Kansas City, George Clooney in Good Night, and Good Luck in NYC, and Stephen Colbert hosting The Late Show in NYC.

Physically I feel so much better than I did in January. In August I walked at least 4,000 steps all except five days of the month. Three of those days were over a long pool weekend at my aunt’s house. This month my goal has been 4,500. I’ve done pretty well but have had too many days where I’ve been experiencing vertigo and not moving around as much due to balance issues. More on that below.

Nashville

I had a follow up appointment at Vanderbilt in August. At this point there aren’t any changes. I saw two cardiologists this time. The heart failure/transplant cardiologist from March and then a cardiologist that specializes in congenital heart defects, specifically the things that I have. They were both happy that I’m continuing to improve physically and encouraged me to keep doing the strength training.

While in Nashville my Mom and I went to DOLLY:A True Original Musical and it was so much fun! Here’s a picture of Dolly and I.

Slow Progress

Going to the gym and getting a trainer may be one of the best things I’ve ever done for my health. Not only am I able to walk more steps, my stride has increased so I cover more ground. For example, in January I walked 109K steps and my distance was 34.6 miles. In April I walked 94K steps and my distance was 39.4 miles. August 2024 I walked 127K steps and 39.6 miles and June 2025 I walked 120K steps and 50.4 miles. I’m really happy about this progress and hope that it continues.

The Feeling of Powerless

The state of the country has felt pretty heavy to me this summer. I really don’t want to focus on politics in this substack - I know I have friends and family in both political parties and I don’t want cause division but the last six months have been rough. The Federal government is being hollowed out, unqualified people are in positions of power, and long term residents of the country (and some citizens) have been brutally rounded up by ICE. Important medical research funding is gone, cancer studies (including a very important children’s cancer study) are gone, a long term diabetes study is gone, I could go on. It may be more difficult to get vaccines in the future and we’re seeing re-emerging outbreaks of measles. All of this in addition to the fact that America is aligning with authoritarian governments and withdrawing from our NATO allies. Throughout the course of my life democrats and republicans have disagreed on policy at home but have been fairly aligned on foreign policy so to see this shift is pretty shocking. I also want us to be able to talk to each other. The isolation of social media and the tailoring of the algorithm means that we’re usually only hearing the voices that we agree with and this seems to have caused us to forgot how to respectfully engage with each other and truly listen to a different perspective. I’m trying to do more of that instead of making assumptions.

Happy News

Next week my Mom and I are going to New Hampshire to visit my sister! I’m so excited - obviously to see her - but also because I have always wanted to see New England in the fall! I plan to get up at least one morning and go watch the sunrise over the ocean. I did that in May and it was amazing. I’m also really looking forward to having this for lunch again. A gluten free popover, clam chowder, and strawberry lemonade.

Next Chapter

I’m not sure yet what’s next for me. I had planned to return to the workforce this fall and had started job hunting. I can’t remember if I’ve mentioned this or not but on top of everything else, about two years ago I learned that I have endolymphatic hydrops; it’s very similar to Ménière’s Disease. The primary symptom other than hearing loss is difficulty regulating the fluid in the inner ear. Episodes are brought on when the fluid levels are high. This impacts hearing ability and results in vertigo. I’ve noticed a correlation between episodes and the weather. Significant weather changes as well as significant pressure changes seem to trigger my episodes. There is no cure, only management of symptoms which I’m working on with my ENT. On days that I don’t have fluid build up my hearing loss is easily managed with a hearing aide. I was born without a left ear and the ability to hear on that side which means that my ENT and I didn’t realize that I have this in both ears because the first noticeable symptom is hearing loss. Now I’ve had two “drop attacks” which are when your body just falls. The description on google is pretty accurate to my experience “characterized by sudden falls to the ground without warning, consciousness, or neurological symptoms, often accompanied by a sensation of being pushed or the environment tilting”. Drop attacks are pretty late stage in the disease and my first one was in July so it’s likely I’ve had this in my left ear for many years and it’s not uncommon for it to move to the other side. I’ll most likely be having surgery to remove the balance mechanism in my left ear which will stop the attacks (and I’m hoping all of my vertigo) but the downside to the surgery is that the recovery period can be rough as your body adjusts to the change in equilibrium. So, the job hunt has been paused for now while I focus on this.

Finding Joy

Life is a mixed bag; that’s how it’s supposed to be. We wouldn’t know joy if we didn’t also know pain. I choose to focus on the joy, the good things in my life and I see that it’s a wonderful life, full of things and people that I love. Speaking of someone that I love, here’s a photo of Lola interrupting a game of scrabble.