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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An Adult Reviews Baby Food

If you don't have Gastroparesis [GP] or some other digestive disorder you might not know that some adults eat baby food [and not as a fetish thing. 'adult babies' is a fetish thing. and I mean, you do you buddy. sleep in a crib or whatever, but that's not my jam] When you have GP … Continue reading An Adult Reviews Baby Food

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!!!

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