I haven't done any airplane travel in a year and a half. I only ever fly to go visit extended family in the Midwest, and we don't get the chance to do that super often. Well, next month I am finally going with my mom and siblings to go visit all our relatives again. Which … Continue reading Prepping for Flight
I had a good, productive day yesterday. I got out to see friends, helped out a teenager with EDS/Dysautonomia that I have been watching a few hours a week while his mom is out running errands (he is a fall risk and can't be alone), and came up with another embroidery design to work on. … Continue reading A Good Day
Had my yearly check up with my connective tissue disorder doctor today, just got home about an hour ago. Good news! My aorta is still doing fine! My doctor decided today to reclassify me as having Ehlers Danlos Syndrome (Hypermobility Type) instead of Marfan Syndrome. So yay, not likely to need heart surgery in the … Continue reading A Change in Diagnosis?
[image description: a parking space with the disabled access symbol painted on it. The space has been blocked off by fencing and is covered in construction debris] This is what the disabled parking spaces in a shopping center near me have looked like for the past six months! There is construction being done to the facades of … Continue reading Accessibility Ignorance
It isn't that stereotypical "sad and crying all the time" depressed that people without depression imagine. It's that "emotional equivalent of watching paint dry" kind of depressed where you don't enjoy all the things that you usually would and so you kind of just space out and go on autopilot through everything. Doing volunteer work … Continue reading Depressed? I guess?
*in radio advertiser voice* "Today's blog is brought to you by brain fog! It's like a Winter morning in San Francisco, but a lot less pretty..." I've been in a pain flare up for the past several weeks, which hasn't been fun, but I am coping. I started seeing a new physical therapist who is … Continue reading Ramblings/Life Update
Martina Stawski is my role model for doing my best to live well with chronic illnesses. She, with her husband Simon, runs the YouTube channel Simon and Martina along with the EatYourKimchi website. The two of them are Canadians that have been living in Asia the past ten years; first in South Korea for eight … Continue reading #BuildALadder
No matter how much I improve I will always have days where I can't leave the house; sometimes not even leave my bed. I've accepted that probably won't change any time soon. I am just grateful that I can go out more than I used to and that I can drive myself. However, it is … Continue reading How I Avoid Losing My Mind When I Can’t Leave The House.
I am making progress. I sometimes get down on myself and feel like I am stagnating, but then I have to remind myself how far I have come! A year ago I couldn't drive, didn't have a car, didn't have Wanda the Wheelchair, kept on having to recover from surgeries, and was still weak from … Continue reading Little by Little
...but they ask you to take your pants off without even having the courtesy to buy you dinner first! I saw an orthopedist this week. I always feel the need to impress a new doctor. I want to appear informed but not overly pushy about my treatment options. At least this doctor knew what Marfan … Continue reading Seeing A New Doctor Is Like Going On A Blind Date…