Lady of the Fringe

it's a magpie's nest

Home again, home again, jiggedy jig.
Home from my travels, again. Happy to sleep in my own bed.
This trip was to Grove City, PA and thence to Indianapolis, IN, to the PHAssociation Convention there. Lots of early mornings, late nights and long days in between.

I learned more about the dastardly disease that my oldest daughter, had, (PH stands for pulmonary hypertension*) and about advances in treatment. When she was diagnosed with PH, the doctor giving us the diagnosis said there were no treatments, but we should see the transplant people for completeness sake. When we saw the transplant people, and I asked if there were any medications that might help, the doctor said there was something, but it wasn't approved, and they only used it to help the candidates hold on at the very end, in hopes of getting their transplant before they died. When we went to the other hospital, the doctor there said you don't need a transplant, we have medicine to help; and there were two, nifedipine and Flolan.

Now there are TWELVE medicines, and another one that should be FDA approved sometime this year.

I met some new people, and met some friends face to face for the first time. I also brought along origami paper, and managed to fold and give out around 600 flapping birds.

There were dinners, and at one, while I was folding birds for the children of a couple at the next table, I was answering a question from someone at my own table. She'd asked why I was still active in the PH community if my daughter had passed away. I answered that sometimes a random thing I know can help someone else, like finding out that saline nasal gel is better than saline nasal spray for someone with an oxygen cannula, because the gel doesn't burn like the spray, and doesn't run out of the nose right away... and as long as I have the chance of helping someone, I'm in.

The mom at the next table said she was an ear, nose and throat doctor, asked a few questions about saline nasal gel, and told me I may just have saved some people from nose bleeds. How is that for a random thing being unexpectedly useful?

The PHA has an early diagnosis campaign that I want to help with. It is too late for my daughter, (it took 13 years from the time we knew something was very wrong until we got a doctor to tell us it was PH) but I don't want anyone else to wait that long and get that sick before they find a doctor who can name the problem and start appropriate treatment. It was another year after diagnosis before she was prescribed medication that helped.

*pulmonary hypertension (long for is pulmonary arterial hypertension) refers to high blood pressures in the lungs, related to changes in the walls of the capillaries and increased vascular resistance. it generally plays merry hell with the function and health of the right side of the heart. There is also a version where the left side of the heart is affected, sometimes called PVOD, pulmonary venous occlusive disease, and other names much less fond.

PS. I did something horrible while writing this before, and couldn't figure out how to fix the eggshell on cream coloration, so trying again. *big dog sigh*
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Catherine Wheel Stitch Hat, and "Bacon" scarf
A friend saw this photo of hat and scarf, and asked me why I had bacon with the hat.
Bacon? or a scarf?Collapse )

They should be broken hearts today.
Milk Hearts
Farewell Jake.

For Fans of Jay Lake (and/or Howard Taylor)
There is a fundraiser, intriguingly called Sequence a Science Fiction Writer, to help defray the costs involved in the eponymous sequencing.

I got there through Howard's post below the Schlock Mercenary web comic, and I share with you his link .

I want to say something more, but I keep discarding the words because nothing seems to fit the situation quite the way I want it to.  Go, look, read.  Decide for yourself.

It's Icon Day 24
Tod is willing to draw you an icon, just for you, if you ask nicely, and post the request as a comment on the Icon Day thread here:

He's the one who drew my lovely Burd!

Boosting the signal: Dog stolen along with truck, BOLO South Carolina
Editing to fix my original mis-apprehension.

One of my LJ friends is boosting the signal for his friend who had his dog stolen along with his truck. (1985 Toyota Land Cruiser)

Friend of my friend is trying to find his dog, and get her back.

Link to my friend's LJ post: http://users.livejournal.com/_eljefe_/237369.html
for more information and pictures of truck and dog.
And a link there to the OP.

I've disabled comments, because if you have any help to offer, go there.

End of September and what have I been doing?
Making earrings, and crocheting things.
Experiment in using scrap book picture...Collapse )

Writer's Block: Dear Abby

Who do you go to for advice?

View 124 Answers

My daughters, my friends, my spouse.

Con-or-Bust Auction is on Now. Go Look!
I have posted offerings to the Con Or Bust auction. Go look.

Mine are the least of many fabulous offerings


Oh, and here are mine:

Craft Meme
I promise* will do my best to make something handmade for the first five people who comment. They must are encouraged* in turn post this and make something for the first five people who comment on their status. The rules are it has to be handmade by you and they must receive it before 2012 ends...who's in with me?!

*I copied [info]gnomi's changes from the original (via [info]jennythe_reader) because I feel uncomfortable promising in case I default, and I don't like making people participate in memes if they don't want to. Also, I'm interpreting "handmade" liberally.

You might also get a bonus if you sign up, a bar of small-batch goat milk soap made by my daughter in Oregon.  I love the stuff.
=available scents:
Unscented (my favorite);  Cucumber melon;  Chocolate;  Peppermint;  Lavender; Patchouli

The slots:
1) [info]jennythe_reader

PS. Jenny's is here if you want to play.
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