A lot of people, especially in the chronic illness community, talk about self-care. That's great, but I have noticed it often time involves babying oneself. On some days it is good to swaddle yourself in blankets and watch anime, but not all the time. Sometimes what we need is to give ourselves a swift kick … Continue reading Sometimes Self-Parenting Is Better Than Self-Care
I haven't updated here in so long. I don't know how often people find their way to my little corner of the internet, but I like sharing bits of my life in the hopes that someone else out there can relate or find my words helpful. On March 4th, 2019 my older sister received her … Continue reading Hi there, it’s been awhile.
This past weekend I took my partner up to the seaside village of Mendocino. He had never been there before and it is one of my favorite places in the world; so I wanted to share it with him. We had a wonderful time. During that trip I was the happiest I have been in … Continue reading The Magic of Mendocino
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?
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
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!
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
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