Pokemon GO as Physical Therapy?

Ever since I got back from conference I have been getting back into playing Pokemon GO, and found it to be a good motivator to get me to go for walks! Walking is really exhausting for me and can also be painful depending on how my joints/muscles are behaving that day. Regardless, I have been … Continue reading Pokemon GO as Physical Therapy?

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A POTSies Guide to Surviving Summer!

It's the most dreaded season for POTSies everywhere, the time of year when it feels like we must surely be living in Satan's buttcrack; it's...SUMMER! I know a lot of people love Summer and frolicking in the sun, working on their tans clad in nothing but swimsuits. I, however, am a pale ghost lady who … Continue reading A POTSies Guide to Surviving Summer!

Returning Home

I got home from the conference yesterday afternoon. It was a magical weekend, getting to be around so many other people who understand what it is like living with a connective tissue disorder. I miss all my new friends already and I wish I didn't have to wait a full year for all of us … Continue reading Returning Home

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!!!

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

A Change in Diagnosis?

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?