November 15, 2014: I am doomed. (Update 2: Maybe not?) Upd #4: Day 2 Begins
Last edited Sat Nov 8, 2014, 11:46 AM - Edit history (4)
ON EDIT #3: This thread is really all about this one - "Need some good vibes, please." http://www.democraticunderground.com/1018679841 about writing the DRATTABLE paper referenced.
I am replying to myself so I do not feel so completely isolated while I work on this thing.
I have taken the day off work. I think I am making progress.
Maybe.
Re watched the video series I did about this back in July 2012 - very proud of it. I give DU and fubar a shout out in this one. (It got broken down into four parts due to length.)
I want the icon of the stick figure running around with their hair on fire.
Back to it!
ON EDIT #1: I am never going to get this done. Where is the "ripping out my own hair" smiley?
ON EDIT #2: Okay, I just wrote an AMAZING introduction, and copied the "symptom" page I already did. Maybe I can do this.
But now what?
ON EDIT #3: It is a fresh morning, and I'm partying at the library again.
= new reply since forum marked as read
So, I am hanging out at the local public library. I am working on the "prematurity=mortality/morbidity section" using quotes from the Michigan Infant Mortality Reduction Seminar in October of 2011 (does anyone know if I have to get a hold of the dean from the medical school who I am quoting, or can I just get away with making clear she is the source of the statistics?) and the guy in the cubicle next to me is wearing medical gear. I ask him what kind of a doctor he is. He snarks "a good one!" I glare a little bit, and say, "seriously, what kind?"
At which point he confesses HE IS FREAKING NEUROLOGIST!!!!
So, I start showing him what I am working on (I NEED HELP!!!) and he says "this should be written by a doctor" and I pretty much ROLL MY EYES at him with "no shit, Sherlock" and ask if he wants to help. He asks if I will put his name on it - HAPPY TO DO SO, especially if he can help me write this DRATTED FINAL WRITE UP.
(Did I mention I am not having fun?)
He is an adult neurologist. His name is Gavin. He gave me his phone number. He is intrigued. He says I need to shorten my hypothesis, and wanted to know if it was what we started with - (uh, NO - I didn't know jack diddly about CP or neuro issues when this whole mess started). All of my data is child related, which was kind of disappointing to him. He liked that we made clonus go away, but all my data is about children, and I have no idea how much of this will help adults.
I wish my nemesis had stepped up back in 2012; my plate was pretty darn full with the children, and I have no idea about the cerebral palsy adults. (I did unofficially meet one woman who told her sister about it; our kids were doing the same activity, and by the end of the cycle she said her sister seemed to be "doing better" but that is not exactly "evidence based" data!)
Seriously, what are the odds "Gavin the Neurologist" was going to be sitting next to my computer cube at the public library? There are 10 different work stations, each with 4 computers -- I am a little freaked out at this possible "divine intervention."
I have so much work to do still....
Please, DU, send me some good vibes....
The one where the wife is being crazy, right?
That bit I know like the back of my hand.
Got specifications worked out for three of the charts - two for the original preemie's unprecedented growth, and one detailing out the factors that put a child at risk of deficiency, starting with maternal health history, pregnancy, at birth, infancy and childhood.
REALLY GETTING TIRED OF THIS.
Now going to work on the "patterns" when children see improvement.
Sigh. Library closes at 6:00 -- I am tired!
It is kind of depressing. There was a flame war in a preemie parent support group (with one moderator in particular really getting me going on actually researching this stuff), that is just...depressing to read now that I know what I know. I did not understand the deficiency tie in with neuro issues back then; just how it related to growth. There were about half a dozen Very Nasty People who explained to me that I did not know what I was talking about (and they did not use nice words). At the time I went forth and did google-fu, and begged them to try it. I even offered with one woman to send it to her for free (at the time there was no "Preemie Growth Project" - just me trying to help a stranger), but she rejected the offer and was watching her child suffer....
It is seven years later - those people are most likely living very "special need parent" lives now, while I deal with different issues (a gifted boy-child who is a bit Aspie like, a gifted girl-child who likes to blend in, both very physically healthy and active). Oh, God! There but for the grace of God....
And then I got to re-read the meta-wars that happened when everything blew up because of the neighbor girl in June of 2012. I did not know diddly about CP, and so when her symptoms began reversing, I reached out, and ended up getting called all kinds of names by people I had previously had reasonable relationships with. (I copied the meta threads - I was called everything except a decent human being by some of the posters here.)
In 2007 my husband told me I needed to stop "trying to save the world" - he said it as a joke, and honestly, I had forgotten about it. Between 2009 and 2012 major breakthrough data was ignored by people whose jobs it should have been to "thoroughly investigate it" because they were "very busy" doing "important things." In 2012 a random act of kindness, truthfully initiated in an attempt to ingratiate myself with new neighbors, started a chain of events that is impacting hundreds of lives right this minute. The families whose children have benefited encourage me and say "you are doing God's work!" while I question everything from my own competence to my own conclusions, and endlessly berate myself for "not doing more" or "enough" or whatever.
I have been blessed with a stubborn and tenacious personality. When I look back over the words of the "haters", I wonder how I found the courage to go on.
And then I start reading the parent reports, and I question how I could let them die just because some people on the internet were mean to me a few times.
I know I am typing this for myself, as a bit of a diary, so I can remember later how challenging this thing was, but if anyone wants to say something nice, I would be most grateful. Some people were very mean to me, and years later, it still stings a bit.
for the sole purpose of saying, "NO, that is 100% WRONG?!?!?"
It seems rude not to warn them, but maybe they will never know, and starting a confrontation seems unpleasant.....
Library doesn't open until noon. Today is going to be about result charts.
On another "SERIOUSLY?" note, the mom hosting the 7-year olds birthday party last night is an internal medicine specialist doing her advanced work in public health and biostatistics; she is going to take a look at my stats for me - woo hoo! - and may be interested in the task force with the local public health department initiative to reduce infant mortality project.
And I have discovered I have officially lost any sense of appropriate boundaries I ever had; began discussing the "bowel change" responding children reported/how this appears to be key in identifying those who respond to the intervention with a family member of the host (also physician).
Yup, I was actually talking about "poop" at a second grader's party. My kids won't be able to take me anywhere!
