Gettin’ Back to It

Finally dragged my butt back to the gym today. I have been going to PT twice a week, but I hadn’t gone to the regular gym in months.

Just did some water walking in the heated pool. Not going to be doing water aerobics again because I am pretty sure that is how my pelvis got knocked out of alignment. Simply walking laps in the water feels good on my joints and works my muscles.

Next time I will have to go at a time of day when there aren’t so many little kids to dodge. (they’re cute and all, but splash a lot).


Craving College

It’s graduation season again, which means I am once again feeling a little envious.

I have accepted that I am ill and will remain so for the rest of my life unless there is some sort of cure discovered in my lifetime. It’s okay, I can and do still have a good life for the most part. I don’t generally waste much time wondering what could have been had I not had these illnesses.

That all being said; when it is graduation season and I see photos of all my friends graduating from various prestigious colleges I do get sad and jealous. Then I feel guilty for feeling jealous.

I have never been well enough to complete any college classes. In fact, since my health first really started going downhill a decade ago there have been only two years of school that I completed without significant absences. Eighth grade and tenth grade.

I want to go to college to study Biology and specialize in Genetics. I would love to be able to contribute to the research affecting the connective tissue disorders community.

Currently I am looking at various not-for-profit online colleges. Online college still takes a lot of energy; a brain that is hard at work uses A LOT of energy points. However, at least there is not the extra energy loss from traveling to school, sitting upright in uncomfortable lecture halls and labs, florescent lighting, and traversing campus to get from class to class. Having the option to stay in your pajamas and attend class from your favorite recliner sounds good to me.

I am not enrolled anywhere yet, just looking at some options.

Getting Work Done My Way

I am helping make decorations for the wedding of some friends. Cutting out the fabric for the banners is the most time consuming part at the moment. Right now working from my bed is more comfortable than standing at my sewing table, so I brought my cutting mat up to my room and am cutting fabric while I binge-watch Prison Break on my laptop.

[image description: my rotary cutter, cutting mat, and fabric all layed out on my bed next to my laptop.]

Ollivander is being my little helper as always (when he isn’t walking all over my workspace)

[image description: Ollivander sitting behind a pile of fabric. His head is turned as he looks at something over his shoulder]

Archiving Dad’s Memories

My mom recently had to clean out the garage so that we could get the old, rotting ceiling removed and clean out the attic space above it that had been home to a colony of rodents. While sorting through all the boxes and bins that have accumulated over the years Mom found an old box of photos, cards, and letters that Dad had saved; spanning from around 1985 – 2008. My dad passed away in a hiking accident when I was 13 years old (2009), so any memorabilia from him is very precious.

Looking through the box tonight we couldn’t believe all of the stuff he had saved. I found a birthday card that my best friend had made for him when we were in kindergarten! She is still one of my best friends now so I had to text her a picture of it. He also saved the ticket from the jazz concert that he took my mom to on their first date back in ’89. Lots of letters from his friends and cousins too. Even a card that his brother (who has also passed away now) wrote to him.

There are hundreds of photos in the box, many sorted into labeled envelopes in Dad’s neat, printed handwriting. They document trips he took with his friends and siblings as a young man, family gatherings, his business trips that took him around the world, the early childhoods of my siblings and me.

I am lucky that I have a ridiculously good long term memory. I can still remember things from back when I was two years old! I can still remember the events during which a lot of those childhood photos were taken. I can still remember those good years with my dad. I think that maybe my brother doesn’t remember those years as much, which is sad.

He loved us, he cared for us, and he taught us about the world. It wasn’t his fault that depression sunk its claws into him in our later childhoods and early teen years, taking away some of his vibrant spirit. There was a time before that, when he was happy, when we were all happy. That is the time that I choose to remember and that I want to make sure stays documented.

Anyways, the point is, I have a new project to work on! I want to archive all of this stuff. Scan it all into a computer and put it on discs to distribute to family members. My aunts, uncle, and grandparents would especially appreciate it I think. It’s important to keep a record of when he was still so vibrant and full of life.

Will post updates periodically about how this endeavor is going. We are hoping to go back to Illinois to visit family in June, so maybe I can try to have it ready by then.

Hello Internet. I am your friendly neighborhood cyborg!

Welcome to my little blog.

I have been doing this whole chronically-ill-young-adult thing for awhile now, and I thought maybe some of my experiences could help someone else out there or make them feel less alone.

I live with Marfan Syndrome, Dysautonomia w/ Gastroparesis, Hypothyroidism, and Celiac Disease. It took me a long time and a lot of self-advocacy to get properly diagnosed with all of those conditions. I hope to write posts on a vast amount of topics related to my experiences with chronic illnesses.

And cat pictures. There WILL be cat pictures. My cat Ollivander is a fantastic floofball that I must share with the world. He is my dedicated little sidekick.


[image description: picture of me from a couple years ago with short, blue hair; sitting on a couch. I am holding my long-haired, pumpkin and cream colored cat, named Ollivander.] Photo taken by my cousin.