MarfanLife.net | News blog

Wow! The pledges are nearing $1000 for Marfan Blog! So far, there have been 31 registered sponsors for this blog. Thanks, everyone! The online pledging stops early Tuesday morning (I believe) so if you’re planning to pledge, please do so now. Click the words “Sponsor me…” in the left-hand panel. Once you’ve registered and pledged, you’ll receive a confirmation mail with a URL you’ll need to click on to make your pledge final.

I’m awake. Still very groggy. I slept for an hour and a half, then was woken up by the phone (it didn’t occur to me to turn the ringer off), stayed up for a couple hours, then crashed on the floor while reading. Woke up about three hours later. Since my husband was on midnight shift, and this was his last night, he did the same. We crashed around the same time, then woke up only by my alarm waking me up to remind me to take my calcium channel blockers.

I see a few mistakes and problems on the blog, and will fix them after I eat dinner? breakfast? lunch? whatever! I’m hungry! Again, thanks everyone for a fun time! Can’t wait til next year. We’ll have more time to plan and get things ready. There were some graphics I had to reformat so they would work on the web, and they didn’t come out so good. But they’re all great to see even if they’re not perfect!

I did it! I made it through! Thanks to all the sponsors and all the people who sent me stuff to blog! Thanks to the friends who dropped comments and e-mails while I was sitting here alone.

I am hoping that it may have done some good. Besides raising money for the NMF, I am hoping this one-day effort will have helped raise awareness of the Marfan syndrome. I hope some people stopping by the blog during these past 24 hours, or who will stop by in the future (since the Blog will be up for years to come — these messages will be archived, but still accessible) may have noticed a similarity in symptoms in themselves or in people they know. Since doctors often fail to recognize that there is anything seriously wrong, and diagnoses aren’t easily made, I just hope people start to understand the severity of the Marfan syndrome.

I did this in memory Jane Harris, John Morrell III, Chris Paulsen, John Malara, Jocelyn Wilson, Anna Doherty, Glenda Knightstep, Scott Kiefer, Judy Hayes-Kuchyt, Saundra Hesse, Sara Cayo, Melody, Allison Dunvegan Reed, Roberta and Susan, and I know I’m missing a few because my brain’s not working very well at this hour (but e-mail me if you have someone you want me to add. Include a .jpg picture, too, if you have one). And I did this in the hopes the children like Zoie will be able to live a long, healthy, pain-free full life.

Zoie, age 2
Thanks, everyone! Time to sleep!!

i can’t lift my wife.
because of this,
my heart cries
it knows i blame it
please sit in the chair
drop… blink, blink… cover this eye
how many letters?

mitral valve prolapse
blood gushes through, dribbles back
where’s the oxygen?

seen across the room
you look like someone i should tell
it might save your life

eyes, heart, lungs, spine, hips,
but not soul, thank god, thank god
connective tissue

(Marfan BASIC)
10 let me be young
20 warn me of the risk
30 time to pay

if only i were
fatter, shorter, uglier
ready for Oprah?

in the beginning
the tissue stretched and returned
now it misbehaves

Bryan Jones

Get your heart-filled HeARTworks Calendar from the National Marfan Foundation.
They make nice gifts! (Christmas is coming!)(Unavailable now)

Here’s another member of the Marfan community
(Bob, not the dog)
You already saw Bob’s thumb in an early entry

Visit Bob’s home page

See, Cela? You thought I wouldn’t make it! Still going “strong” (sort of) at 6:32 a.m.!

cut my ribs in half
heal my heart, repair my lungs
can you prevent more?

beta blockers? Hell!
studies, trials, i don’t care
hmmm, now, where was i?

given a topic,
my thoughts and fingers can fly
and my heart escape

shopping for a ride
i want a car with legroom
this leaves three choices

into life i jump
headfirst, heartfirst, charging on
to live while i can

HMO health plans
“the world’s best medicine,” if
you aren’t pre-damaged

-Bryan Jones

Long live the Internet! If there was no Internet, the only person with the Marfan syndrome I would ever have met, is my mother. And I would not even know how many marfs we are out there worldwide. But since there is something called the Internet I have contact with many people all around the world with the same problems, speculations and questions as I have. I am not alone! And I can search for more information about this syndrome in various databases, online journals, chat groups and so forth. Thanks to the marfan-list I can ask almost 500 people about their experiences in different matters. And that is A LOT more than I would ever be able to do without the Internet…

/Jenny in Sweden

Some of the online journals, chat groups and so forth:
Newsgroup: alt.support.marfan
Newsgroup: alt.support.tall
Long Tall Folks’ Journal on LiveJournal
Yahoo! Groups Marfans Support and Chat
Yahoo! Groups Marfans Support Group
Christians With Marfans
Hypermobility Forum
Australian Marfans Syndrome Support List (Oz Marfans)to all, not just Australians
Marfan Association UK Forum
Mailing List van Marfan.nl in Dutch
Marfan Francophone a Yahoo! group in French
Yahoo Groups Marfan Syndrome in Singapore
and of course Marfan-List