The Dino-Aspie Ex-Café (for Those 40+... or feeling creaky)

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is it a good book, lelia?


back to the obsession - any medical techies out there, i need info. we have an authorization, finally, on paper in my hot little hands. it is for a "whole genome squencing", sweat test, and porphryia screen. (the last is a long-shot.) this does not sound right, so i'm paranoid it's an error. (we've had that happen before, HUGE errors that resulted in tests we didn't need being done and those we did need not being done, and the HMO then not allowing the tests we needed due to the expense already incurred.)

we were led to believe they were only going to be looking at the specific 14688 mitochondrial dna mutation. from what i can find of the "whole genome sequencing" test it's extraordinarily expensive and looks at the entire set of nuclear DNA, but not at mtDNA.

hence, while it's truly impressive that they've authorized the test, i'm not sure it'd give the answer we need. then again, maybe they've decided something and we haven't heard of it? that's pretty weird. but no weirder than any of this has been so far.

anybody know this test? at all?

Wait until after Mercury turns direct on the 29th and this extremely tense opposition begins to dissolve and weaken. And when we return to a more normal pattern.

too late. before i saw this i emailed the specialist's assistant, asking for the code for the test to verify if it was the correct code - and she basically brushed me off back to the HMO. so i have just emailed the HMO ombudsman to ask what the code is, as i'm not convinced it's correct from the wording on the authorization form. if it is, fine. if not, ... you'd think the HMO would want to save $10k, you know?

our other specialist, the geneticist, thought the wording was wonky, too. she said i should find out from specialist's assistant precisely how the test was to be done, to make sure it was done properly when we were there. specialist's assistant didn't address that at all, just the brush-off back to the HMO.

we have had SO many problems with tests now, with the wrong ones being done, with lost tests, with tests not done when we were told they were, etc., that i am taking nothing for granted. i REALLY do not trust any of the underlings in this chain, as they're just NOT the brightest bulbs in the string. we've been trying to get this all done since FEBRUARY. it's now, gee, 8 months later and i get a vaguely worded letter that doesn't even say who to contact to get the tests arranged?

nice.

sigh. it'll probably take until after the 29th for them to get it all straight anyway.

the plan to work part time is failing, i'm doing almost a full time anyway.
but if the pupils stay as interested and working as they are, i do it happily

oh, good for you, lemon!

~~~~

i was right. inaccurate codes.......... and referred to the wrong lab - one that can't do those tests! wow. a whole new level. trying to get it fixed now.

[youtube]http://www.youtube.com/watch?v=0IDZEa7jSt8[/youtube]

double check the details. . and make the appointments for after AFTER the 29th of Sept.

Hmmmm . . . look at that image, then look at sinsboldly's current avatar.
If that is actually sinsboldly . . .
Hmmmmmmm . . . .

oh, gosh, no! that is Mary Travers about 1975 or so

I got diagnosed with Aortic Stenosis. That's a heart murmer. I didn't want anything else added to my life.

I need to lose weight and walk.. But I needed to do that before too, so nothing has really changed, except a medical professional feels smart.

I lost 72 lbs with Alli. I had to. My left knee was killing me even with the cortisone shots. I had no wind and I was miserable. I had good luck with Alli because I recognized it was teaching me how to eat by making it a real problem gastrically by not following the low fat diet. I bought a bycycle and peddled around for an hour at night, I walked to the grocery and cariied my groceries home, making two or three trips some times.

I had to, I was miserable. I am much better now just trying to keep it off.

good luck to you, Botti

oh, as if there was a chance of getting an appointment within 10 days.... i'm just hoping it's not december.

bummer. i had to make myself lose 50 pounds a few years ago, and it was tough at first. once you get into a routine of not eating much and doing everything else that you can without the aid of machines (walking everywhere, etc.) it gets a bit easier. i did have a "cheat" though. coffee. i don't particularly like coffee, but it killed my appetite. so a very light breakfast, then coffee at 10am, then a yogurt for lunch, then a coffee at 2, then a very light supper... worked.

good luck!

(and medical pros all think they're geniuses, don't they? )

Coffee kills appetite? I may need to learn to drink the nasty stuff. Ugh! I'm hungry almost all the time. And my husband is never hungry. Life is not fair. Caffeine makes me sick.
And the HMO is not fair to Nan. The only place I have ever heard of such extreme levels of boobery is in government bureaucracy.
Lemon, I would love to be in your class.


But for me, life is extremely happy. My beautiful baby boy just had a beautiful baby boy via his wife. But he named him Xian. What is this? And my daughter named her daughter Xyia. So half my grandchildren's names start with X. I realize that American blacks often like to give their kids names that are not Anglo-saxen or European, but I wish they would pick instantly spellable or pronounceable names. Through historical accident I have gone my life with a misspelled name, and it is extremely inconvenient. My husband has the hardest time calling in kids from the waiting room as now both black and white try to find the most creative ways to spell their kid's names.

Maybe I'll get by with calling the little sweetie by his middle name of Malcolm. Which I found a curious choice as that is his birthmother's maiden name. He has never indicated a strong desire to meet his birthmother. We were the ones who put his name on a search list, which has never been answered.

Oh, and if anybody knows of a video game programming job for a company that would be willing to hire a good programmer for part time until he finds a medication that truly helps his condition, please let me know. My middle son, the one with AS, came down with ankylosing spondylitis last year, and he got fired last month for not being able to keep up with the level of work required because he is in constant pain and unable to sleep well.

lelia - yep, coffee. i don't really like it. but i put two little packets of sugar and a little milk in and it makes it tolerable (and about only 50 calories). i got to where it was upsetting my stomach, so i switched to hot tea. doesn't kill the appetite as much, but when i want something to eat and it's not time to eat (per my diet) i can have a hot tea and that holds me over.

yes on the names! my daughter's friends have some pretty strange names - there are a lot of girls with last names for first names here, and then there are the "ethnic" names. never run across xian before, but lots of l'tosha, laquinta, l'donna, shaniqua, etc. kids are brutal to each other on the playground. my kid has a very standard german-sounding last name (not the same as mine) and she caught hell for it. kids with weird names get pushed around a lot....

suggest you get a "pet" name for the grandkids - pooper, or snuggypants, or something else that will cause them tremendous embarrassment as a teenager.


the HMO story - this is with the HMO's own ombudsman trying to plow the field in front of us so that i'm not fighting it all on my own. you can imagine what it was like BEFORE the ombudsman was helping! sigh. perhaps i should go back and gather all the posts about doctors and put them in one manuscript and sell it as a novel?