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?
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 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
[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
*in radio advertiser voice* "Today's blog is brought to you by brain fog! It's like a Winter morning in San Francisco, but a lot less pretty..." I've been in a pain flare up for the past several weeks, which hasn't been fun, but I am coping. I started seeing a new physical therapist who is … Continue reading Ramblings/Life Update
No matter how much I improve I will always have days where I can't leave the house; sometimes not even leave my bed. I've accepted that probably won't change any time soon. I am just grateful that I can go out more than I used to and that I can drive myself. However, it is … Continue reading How I Avoid Losing My Mind When I Can’t Leave The House.
I am making progress. I sometimes get down on myself and feel like I am stagnating, but then I have to remind myself how far I have come! A year ago I couldn't drive, didn't have a car, didn't have Wanda the Wheelchair, kept on having to recover from surgeries, and was still weak from … Continue reading Little by Little
...but they ask you to take your pants off without even having the courtesy to buy you dinner first! I saw an orthopedist this week. I always feel the need to impress a new doctor. I want to appear informed but not overly pushy about my treatment options. At least this doctor knew what Marfan … Continue reading Seeing A New Doctor Is Like Going On A Blind Date…