It's finally here! I've been at the hotel since Wednesday night and I have made so many new friends already. I am learning so much!!! Turns out I am not the only one where there has been some debate over which connective tissue disorder we have. I found out it is possible to have multiple … Continue reading The Marfan Foundation National Conference 2018!!!
Just got back from visiting my relatives in the Midwest. It went well. The flights there and back went smoothly. I had no trouble getting through security with all my medical supplies. I even brought my wheelchair and it survived the trip. I did remove all the easily removable parts on the chair like the … Continue reading Have Wheelchair, Will Travel
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 … Continue reading Craving College
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