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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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?

Depressed? I guess?

It isn't that stereotypical "sad and crying all the time" depressed that people without depression imagine. It's that "emotional equivalent of watching paint dry" kind of depressed where you don't enjoy all the things that you usually would and so you kind of just space out and go on autopilot through everything. Doing volunteer work … Continue reading Depressed? I guess?

Ramblings/Life Update

*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

How I Avoid Losing My Mind When I Can’t Leave The House.

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.

Little by Little

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

Seeing A New Doctor Is Like Going On A Blind Date…

...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…