The Marfan Foundation National Conference 2018!!!

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!!!

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Have Wheelchair, Will Travel

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

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 … Continue reading Craving College

Prepping for Flight

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

A Good Day

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