MarfanLife.net | News blog

The birds are up and singing. It’s light out here. I really didn’t get that tired all night long — not like last year or the year before or the year before. I’m feeling ilght-headed, but other than that, I’m okay. Got through a few rough patches. Anyway, I still have two and a half hours to go. Time to go get the newspaper now, get outside for a bit!

Ellen sent this, as she stopped by the blog in the middle of the night. She writes,
“if you stretch your imagination, the attached photo is Marfan-related. This is my dog Ajax (who we lost to old age a couple of years ago) as a young puppy. He had a bad chewing habit and our mail was delivered everyday through a slot that dropped it right on the living room floor. He thought it was the greatest. So there, among other stuff, you see shoe catalogs torn to shreds. Being a Marf, I end up getting 99% of my shoes from catalogs (and now the internet) because our feet are so #%*!@ hard to fit. It’s lucky the shoe companies send new catalogs every few weeks, because I sure wasn’t able to use that catalog. Unfortunately my new driver’s license was also in that pile and I had to go back to the DMV and stand in line again and tell them my dog ate my driver’s license. You’ll also notice a stick that he somehow managed to drag in through his doggie door, and a blanket that he dragged in from the bedroom. He was a handful.

“Don’t feel obliged to use this if it’s too silly. I guess I’m punchy too.”

Thomas, I’ll take any more you’ve got (or can whip up) of these! -Jeanette

After several peaceful years of living in exile as a “Normal Person”, MarfMan returned home one evening to a terrifying message on his answering machine.

“You went out of network,” the voice snarled. “We don’t cover… that.”

He knew this message could only be the work of the evil crime syndicate known as “HMO”. Led by the nefarious Dee Ductible and her ruthless sidekick Copé, they have subjected countless innocent people to endless hours of torture. He knew he would have to return this call.

Will MarfMan survive the dangers of double billing and the horrors of the hold music to defeat these bureaucratic bad guys?

[image pengy missing]
We saw a nice G-Rated documentary last night called “March of the Penguins.” What’s that got to do with Marfan? Well, my sister Sally emailed me this morning to let me know she’s watching the Blog. Back in 1992 when I arrived at Johns Hopkins for my firstheart, there was a penguin sitting on my bed to welcome me. Sally had put him there, and he was goofy enough to ease my nervous mind considerably. Here he is, still chirping after all these years! More on the importance of family and friends in a later post.

Contributed by Georgia

Georgia

(Actual quotes given by my doctors)

“It’s not your fault your a clutz. Bodies just aren’t supposed to move that way.”

“It’s probably the Marfans, when it doubt it’s usually that.”

“It’s not like you have a normal body.”

“I don’t even want to know how you got in that position.”

“Marfan’s Syndrome is not spelled with an F. I should know. I’ve had my medical degree for 10 years now.” (and I’ve had the disease for 28 years now)

“It’s really impressive how freaky your joints are.” …(geee thanks)

“You don’t have Marfans. You’re not thin enough.”

“It’s just a little scar and you have so many already.”

“So what makes you think you have Marfans?” (oh I just like the sound of it)

And as a special bonus a quote given TO my doctor from my dear husband

If you think that joint bends far you should look at her jaw I keep waiting for her to unhinge it like a snake

And said by the nurse when the doctor left the room in the ER

“You do know they don’t have any idea what to do with you. Marfan’s baffles them.” (trust me it baffles us too.)

“Have you thought about a bigger hospital?”

Remember MarfMan from last year’s Blogathon? He’s back! This year as a star of his own comic book covers! Here’s volume no. 1 cover

click to enlarge

Thanks, MarfMan, AKA Thomas Schranz!