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February 7, 2006

Narcolepsy update
Posted by Teresa at 12:05 PM *

I went to see my neurologist.

And the news is: my sleep disorder center is being shut down. I’ve been busted back down to “I am looking for a new neurologist.”

Damn. I really liked the new guy.

In other news, my excellent GP of many years has parted ways with my insurance plan.

The timing of all this could be a lot better. I’m just sayin’.

Comments on Narcolepsy update:
#1 ::: Fragano Ledgister ::: (view all by) ::: February 07, 2006, 01:48 PM:

Life has a tendency, one finds, to throw as many brickbats as possible in as short a time as possible in one's direction. All one can say is that if one doesn't keep going, one never is surprised by the next wonder to turn the corner.

(And why do I get so stilted when all I want to do is commiserate?)

#2 ::: katharine ::: (view all by) ::: February 07, 2006, 01:58 PM:

Damn. And double damn.

I offer you the basic sympathy of another struggling with treatment and quality-of-life issues, and also the heartfelt sympathy of "Not ANOTHER #$#!" I contacted a friend at Abbot Labs, who told me that at least for people on her level, no one had ever heard that there were XXX narcoleptics using the drug with great success. She told me she'd ask a few questions, but of course you had a lot of people checking out things for you. I didnít gently nag on the issue. If you'd like me to ask again, I will.

On my end, the constant harassment of the Texas board of MDs (they can't find anything to point a finger at, except saying that she had to go to a class on client notes in files...to make them less specific...) means my Lyme practitioner may be losing her MD partner and moving her practice to CA. So I may be working on the phone with my healthcare provider, and flying to San Francisco twice a year to see her.

And some people really donít think thereís a medical crisis erupting in the country.


#3 ::: Kip W ::: (view all by) ::: February 07, 2006, 01:59 PM:

I wish I could think of something more profound to say than to observe that it sucks.

Maybe by the time Boskone rolls around, I'll think of a less useless way to express my sympathy.

#4 ::: Mark Chu-Carroll ::: (view all by) ::: February 07, 2006, 02:07 PM:

Patricia:

I can give you info on a really wonderful GP at Mt. Sinai in Manhattan, who takes pretty much every insurance I know of. One of the things that she's best at is identifying the perfect specialist for wierd problems.

For example, I've got this wierd stomach problem. I had reflux (GERD), and I'm one of the lucky folks who develops resistance to the new anti-acid. So I had stomach surgery. And being really lucky, I'm one of the people who develops a rare complication from that surgery. I spent a year going to my old GP, getting every GI test on earth, and getting no relief. Then I tried the woman who's now my GP - two minutes in her office, reading test results, and she knew what was wrong, called up a researching gastroenterologist at Sinai whose research specializes in disorders like what I developed; she got me an appointment with him the next week, and in one visit, he worked out a regimen of medication that solved the problem for me.

If you'd like her name and phone number, send me private email.

-Mark

#5 ::: P J Evans ::: (view all by) ::: February 07, 2006, 02:12 PM:

Oh fsck!
Teresa, I'm sorry about all this. I wish I could do more to help.
When it rains, everything turns to mud.

#6 ::: Clifton Royston ::: (view all by) ::: February 07, 2006, 02:15 PM:

Holy moly, Teresa. How appalling! Well, there's not much to say beyond hang in there.

Sooner or later, the law of karma (and the law of averages) says you ought to get as many good surprises thrown at you in a row. Otherwise known as "there's got to be a pony under there somewhere."

#7 ::: Teresa Nielsen Hayden ::: (view all by) ::: February 07, 2006, 02:24 PM:

But Clifford, what if I already got the pony? I married Patrick, and I work as a science fiction editor. Maybe I blew my entire karmic budget on those two items.

#8 ::: Serge ::: (view all by) ::: February 07, 2006, 02:28 PM:

...what if I already got the pony? I married Patrick...

If my wife wrote that about me, I'd wonder if she's comparing me to a beast of burden. That being said, the situation does suck the big one.

#9 ::: fidelio ::: (view all by) ::: February 07, 2006, 02:32 PM:

I'm sorry. This is way past the "No fun at all" level, and moving into the "Convergence of disasters" level at much too fast a speed.

#10 ::: Kip Manley ::: (view all by) ::: February 07, 2006, 02:32 PM:

But Clifford, what if I already got the pony?

Ah, but then you had to suffer under the Bush regime. You're still owed a pony. Hell, we're all owed a pony, and quite a bit more, I should think. Hmph.

#11 ::: Elayne Riggs ::: (view all by) ::: February 07, 2006, 02:33 PM:

If you've been schlepping all the way up to White Plains, would you consider schlepping a little less, to Mamaroneck? I did the same Google search you did and the first name that came up is an ENT guy I've met whom my boss' family has been seeing who seems very impressive...

#12 ::: bonniers ::: (view all by) ::: February 07, 2006, 02:40 PM:

That sucks big time. I hope it all gets straightened out soon.

If you take hugs from a stranger, then hugs.

#13 ::: Jon Meltzer ::: (view all by) ::: February 07, 2006, 02:42 PM:

Cornell's incoming president, David Skorton, is a doctor who also will have a professorship at the med school. Perhaps he might take some interest in why community programs are being terminated.

#14 ::: Christopher Davis ::: (view all by) ::: February 07, 2006, 03:13 PM:

Grumpf. Time for another round of "Dear Universe: Please stop screwing over my friends; I have a perfectly good list of people who are deserving of it instead."

Ditto Kip W's sympathy + attempt to think of something more useful than mere sympathy by Boskone.

#15 ::: mayakda ::: (view all by) ::: February 07, 2006, 03:15 PM:

Well that blows bigtime.:(

Sending over positive thoughts -- maybe that help will convince the universe to stop being so ornery.

#16 ::: Scott Raun ::: (view all by) ::: February 07, 2006, 03:16 PM:

Ouch! I hope things start improving!

#17 ::: Sisuile ::: (view all by) ::: February 07, 2006, 03:19 PM:

Is the new guy going to stay in practice, and if so, can you follow him?

#18 ::: Scorpio ::: (view all by) ::: February 07, 2006, 03:59 PM:

Gee, aren't you glad how well Our Free Enterprise System works? Nothing like having your doctor and your insurance part company. The only thing worse is an HMO, which stands for High Margin Ofays.

#19 ::: Kate Nepveu ::: (view all by) ::: February 07, 2006, 04:07 PM:

1) That really, really sucks.

2) I personally don't believe that things happen for a reason (except that of the general laws of cause and effect), or in karmic budgets, or the like: stuff just happens. It occurs to me that it would have been a hell of a lot more useful if the priest doing our pre-wedding counseling had talked about the Catholic position on stuff happening, instead of doing the 1950s' version of "Men are from Mars" (as my backbrain says, "Predestination is the Presbyterians, isn't it, at least in the 1700s?").

3) Are you still doing the low-carb thing? Do you like chocolate chip cookies?

4) (Also, who's Patricia?)

#20 ::: jane ::: (view all by) ::: February 07, 2006, 04:21 PM:

Shit shit and double damn. Bad enough my husband's medical condition if problemmatic, I don't want visiting friends in trouble as well! You will need an extra big hug this Monday (if you are still coming.) Surprise--Adam will be here as well.

Jane

#21 ::: Skwid ::: (view all by) ::: February 07, 2006, 04:21 PM:

Crapola. Here's hoping an even better new Doc is forthcoming.

On a completely different front...am I the only person who saw the word "brickbat" and envisioned a game of gravel lot baseball ending very painfully for several possible participants? OK...I'll be honest...my first mental image was a flying mammal composed of, or possibly assembling, masonry. Which, in the event of the latter, I imagined having some potential savings on mortar...

Maybe I should be seeking a neuro-chem expert, while we're at it...

#22 ::: Madeleine Robins ::: (view all by) ::: February 07, 2006, 04:38 PM:

O, crap and froglegs, Teresa. I am so sorry.

Has the New Neurologist completely evaporated? No chance of seeing him outside the Sleep Center? Ah, hell. You're due a couple of breaks, by my calculation (healthcare breaks, not included in the "you married Patrick and got to edit SF" karma).

#23 ::: Serge ::: (view all by) ::: February 07, 2006, 04:52 PM:

Okay, you brought this up, Teresa. Now I've got to ask since my wife says I'm an incurable Romantic (I don't want to know what a curable one is)...

How did you and Patrick meet?

#24 ::: mary ::: (view all by) ::: February 07, 2006, 05:01 PM:

:( That sucks. I'm so sorry.

I know what you mean about the karmic budget. I'm stuck with never being able to complain about any crappy thing that happens to me ever again, because of a deal I made with God when I was pregnant.

It seems like stuff that happens in life fits a bell-shaped curve. Some people go through life experiencing only stuff in the middle: they stub a toe in the morning, pour a bowl of cereal and discover they don't have any milk; in the afternoon they find a good parking spot, scratch off a lottery ticket and win two bucks. Then there are people (I consider myself one of them) who mostly experience stuff from the far reaches of both ends of the curve.

#25 ::: Melissa Mead ::: (view all by) ::: February 07, 2006, 05:21 PM:

Holy moley, all at once? That rots! I'm so sorry, and I hope you find some great new doctors.

#26 ::: Teresa Nielsen Hayden ::: (view all by) ::: February 07, 2006, 05:29 PM:

Serge: Patrick and I met in the pages of a mimeographed fanzine. We first met in person while working at a Libertarian magazine. He and a friend had traveled to Phoenix from Toronto to work on the magazine, but when they arrived they were so tired that they mostly slept for the next few days. Thus our first exchange of dialogue: I was setting type, and Patrick hazily wandered past me.

T (not turning around): Go ahead, don't say anything. We've only been waiting three days for you to wake up.

P: Huh?

He was a skinny, wiry seventeen-year-old: spring-loaded, hyperactive, still growing, obviously brilliant, and sharp-tongued like you wouldn't believe (she said, sighing fondly). We got together a couple of years later.

#27 ::: James Goodman ::: (view all by) ::: February 07, 2006, 05:38 PM:

Oh, Teresa, I am so sorry to hear that. Hopefully it just means that there is an even better neurologist in your near future.

As for the GP, I ran into the same situation a couple of years ago, it took a while but I'm finally getting used to my new doc, so it probably means they are about to change my insurance again.

I hope the search for both goes well.

#28 ::: Serge ::: (view all by) ::: February 07, 2006, 05:41 PM:

I'd say that was romantic, Teresa. I wonder how many people here have had the chance to join with someone who's their soul mate. Life's such a crapshoot that it's rather unbelievable that these joinings happen at all.

#29 ::: abi ::: (view all by) ::: February 07, 2006, 05:54 PM:

Teresa,

I am sorry to hear this. Troubles come not as single spies, but in batallions is the phrase that springs to mind.

Kip,
You're still owed a pony. Hell, we're all owed a pony, and quite a bit more, I should think.

That's a new twist on 40 acres and a mule.

#30 ::: Mark Chu-Carroll ::: (view all by) ::: February 07, 2006, 07:02 PM:

Pardon me, I'm an idiot. I was typing my earlier message while I was IMing with someone named Pat. Sorry Theresa!

#31 ::: Marilee ::: (view all by) ::: February 07, 2006, 07:30 PM:

Argh. I hope things work out soon!

I have my own doctor problems -- the Prozac stopped working and my primary referred me out to psych. I saw him yesterday and he's more interested in talking about my weird childhood than new meds. I see him next Monday to finish history (I told the clerk we needed two hours for history, but they never believe me) and I will be pushing for new meds.

#32 ::: Lexica ::: (view all by) ::: February 07, 2006, 07:45 PM:

Gaahhh. Rotten news.

I've read a couple of reports about research on the effectiveness of prayer, and one of the conclusions they came to is that the most effective prayer is "Thy will be done." So I'll be holding you in mind while sending "Thy will be done" out... and also sending out "And will something good for her healthwise, wouldja?"

#33 ::: xeger ::: (view all by) ::: February 07, 2006, 08:32 PM:

I think I've mentioned this here before, but my usual description boils down to "No scriptwriter could peddle this much idiocy and annoyance in Hollywood". I hope 'they' can your screenwriter shortly, and hire a more reasonable sort.

#34 ::: amysue ::: (view all by) ::: February 07, 2006, 08:35 PM:

Nothing to add Teresa except shit like that is truly harsh and more than annoying. If I catch you at Boskone I'll probably not hug you (I'm not the huggy type) but will gladly buy you a (insert beverage of choice here).

Karma, fate or just happenstance, after 4+ years of being made to get hepatic MRIs every 3 months-I've recently been told I'm stable enough to do them once a year. And my A1C is 6.3%, so good medical news happens eventually and here's hoping yours is around the corner.

#35 ::: Shawn M Bilodeau ::: (view all by) ::: February 07, 2006, 09:49 PM:

Teresa: There's karma, and then there's destiny.

You, editting SF, and with Patrick? That's destiny.

Karma still owes you a pony. :)

Really, really, really sorry that it does, tho'. :(

#36 ::: Fiendish Writer ::: (view all by) ::: February 07, 2006, 10:25 PM:

Wah! Terrible news, and multiplied over. I wish you best of luck and choices with doctors and medicine.

*shakes all my fists at the us medical system*

#37 ::: Cynthia Wood ::: (view all by) ::: February 07, 2006, 10:40 PM:

Damn Teresa, that really blows. Unfortunately, while I know a truly fabulous neurologist, he's a) in Mississippi - which seems a little far to go, and b) on sabbatical this year.

Forget pony, somebody owes you a dinosaur, assuming that you want one.

#38 ::: Anne Sheller ::: (view all by) ::: February 07, 2006, 11:20 PM:

Yeah, but if she gets a dinosaur, you know it's gonna get sodomised.

Best of luck. Teresa. I'll be praying for you.

#39 ::: Bruce Arthurs ::: (view all by) ::: February 08, 2006, 12:38 AM:

I would recommend you try Hilde's neurologist if you weren't several thousand miles away. I don't know if the doctor has any background in narcolepsy, but she did wonders for Hilde's pain management when Hilde started seeing her several years ago. (Although the doctor's a bit, umm, "prickly" in temperament. As in, she could be the role model that Hugh Laurie toned down for HOUSE. But she's very, very good at her work.)


Serge wrote:
"I'd say that was romantic, Teresa. I wonder how many people here have had the chance to join with someone who's their soul mate. Life's such a crapshoot that it's rather unbelievable that these joinings happen at all."

[waving hand] I did! I did! I'm not a believer in miracles, but getting together with Hilde... that was certainly a wonder. And maybe a miracle, too.

#40 ::: A. J. Luxton ::: (view all by) ::: February 08, 2006, 01:41 AM:

Oh, gosh. That really, really sucks. Although I don't actually know you, I've been following your blog religiously for the last month, and the post you made about the sudden unavailability of your lifeline drug made my teeth clench.

I really hope everything gets sorted out.

If you don't mind my asking, how's the effort to find out-of-US sources for pemoline going?

#41 ::: David Goldfarb ::: (view all by) ::: February 08, 2006, 02:01 AM:

Yet another situation for you to resolve. I wish I could do something more than just express sympathy...but as far as I can tell, I can't, so I just say: That sucks. I hope things get better, soon.

#42 ::: Serge ::: (view all by) ::: February 08, 2006, 06:18 AM:

You too, Bruce? Neither my Sue nor I ever thought we'd find anybody, certainly not someone who'd share the same love of SF/F/comics and be able to laugh at the same things - except for the Three Stooges where it's the usual male/female difference. But overall... Yeah, I'd say we're soul mates.

Ad the chain of events that led to it was so damned unlikely. That's why I don't believe in Destiny. Chaos Theory is what rules.

#43 ::: Vicki ::: (view all by) ::: February 08, 2006, 08:21 AM:

Oh, dear. My sympathy, for what it's worth.

I had a brief "what will I do now" when I was told that my eye doctor no longer took my insurance. Then I looked, and his partner still does.

Hmmm. So I called the office, and as soon as I explained they said I could still see Dr. S, I just needed to get a referral for Dr. G. At a wild guess, he's no longer taking new patients through HIP, but he's happy to keep seeing existing ones.

I doubt anything similar is available with your GP, but it might be worth checking.

#44 ::: Tim Kyger ::: (view all by) ::: February 08, 2006, 08:48 AM:

You and Patrick did indeed see each other first in fmzs. But *I* introduced you in the flesh. And, may I also point out, I also did so in the fmzs too.

We were both walking out of Bill Patterson's place where he was typesetting the IguanaCon II first progress report; December 1976. Patrick was coming in to Billís from outside. I introduced the two of you in the parking area.

I could feel the waves between you two even then.

Freedom Today was months further down the track.

Sometimes the pony runs away.

#45 ::: mary ::: (view all by) ::: February 08, 2006, 09:41 AM:

You and Patrick did indeed see each other first in fmzs

They met in fishery management zones? (She asks, displaying her ignorance.)

#46 ::: Tim Kyger ::: (view all by) ::: February 08, 2006, 09:50 AM:

Fmzs -- science fiction fandom-produced fanzines.

Jargon is *everywhere!*

#47 ::: Serge ::: (view all by) ::: February 08, 2006, 09:56 AM:

Coming soon to Broadway...

Making Light - the Musical

Starring Cyd Charisse and Gene Kelly

#48 ::: Randolph Fritz ::: (view all by) ::: February 08, 2006, 11:03 AM:

Sympathies. I don't believe there's a budget on the love of "god", or whatever, either.

#49 ::: Xopher (Christopher Hatton) ::: (view all by) ::: February 08, 2006, 11:30 AM:

Teresa - that sucks.

Serge - And the title tune could be sung to the tune of "Make 'em Laugh," which of course was to the tune of "Be a Clown," or was it the other way around?

Teresa again - I believe in Karma too. But not that bad things never happen to good people. The slightest life experience will cure anyone of that belief. Still, your recent run does make me think "What the hell?!?!?!?"

#50 ::: Serge ::: (view all by) ::: February 08, 2006, 11:52 AM:

The Clown came first, Xopher, and I understand that Berlin wasn't too happy when he heard the other song, which had been cooked up for Singin' in the Rain.

#51 ::: Sandy B. ::: (view all by) ::: February 08, 2006, 12:06 PM:

Gah.

Ack.

Blugh.

. . .sorry. May the new guy be as good as the old, or even better.

#52 ::: Rob T. ::: (view all by) ::: February 08, 2006, 12:24 PM:

Serge, it was Cole Porter who wrote "Be a Clown", not Irving Berlin. But yeah, Porter wasn't especially happy about it. (On the other hand, in those days you didn't criticize a fellow songwriter for swiping your stuff, at least not when he also happened to run MGM's musicals unit; not if you wanted to work for MGM again, anyway.)

#53 ::: Rob T. ::: (view all by) ::: February 08, 2006, 12:33 PM:

Also (to Teresa) best of luck on finding a new neurologist and a GP for whom your insurance pays. And please excuse my gaucherie in ignoring your situation in my first post on this thread.

#54 ::: Serge ::: (view all by) ::: February 08, 2006, 12:35 PM:

Cole Porter. Thanks, Rob T. The moment I posted the Berlin comment, I asked myself if I had goofed. I had.

#55 ::: Serge ::: (view all by) ::: February 08, 2006, 12:36 PM:

Teresa... Any new development, preferably of an improvement nature?

#56 ::: Epacris ::: (view all by) ::: February 08, 2006, 12:41 PM:

Oh, consarn it all, Teresa. That lot is just so ab-so-bloody-lutely <sighs, waves hands in exasperated, impotent gestures> typical!

It takes me back to my bad year-or-so; just one thing after another, when Seneca seemed particularly apt: "What need is there to weep over parts of life? The whole of it calls for tears. New ills will press on before you have done with the old." And I can only try to imagine how Patrick will be feeling, looking at yet more trouble piling up. <looks at CafePress Anglo-Saxon motto over desktop, sighs again>

A hemisphere of continent and ocean away, I send', like so many others, hopeful thoughts and wishes and 'moral support.

#57 ::: Lis Carey ::: (view all by) ::: February 08, 2006, 12:43 PM:

I'd like to think that troubles come in giant economy packs so that you can deal with them more efficiently, all together, get them out of the way, and not have them cluttering up way more of your life by coming by ones and twos.

Is there a possibility of hooking up with the new neurologist wherever he's going? And if not, can he recommend someone? (I know, painfully obvious, and you're already pursuing these possibilities. I'm just searching for something useful and helpful to say, because "I'm sorry" seems so feeble.)

Maybe the whole pack of us will have come up with something more useful to say by Boskone.

#58 ::: Xopher (Christopher Hatton) ::: (view all by) ::: February 08, 2006, 01:10 PM:

Now I wish I were going to Boskone.

#59 ::: Yoon Ha Lee ::: (view all by) ::: February 08, 2006, 01:20 PM:

Ouch. I'm very sorry to hear. May life sling you some good soon.

#60 ::: Laurie Mann ::: (view all by) ::: February 08, 2006, 02:36 PM:

T, I'm sorry to keep reading that times are tough for you.

I won't suggest that you move to a country with a real health care system, but..

I know what you mean about thinking you blew your whole "karmic allowance" on meeting the right person. I met Jim at my first Western Pennsylvania SF Association meeting in early Spetember 1975 (I think it was the 10th...). I can't say "and we've been together ever since" because I was meeting a lot of interesting college guys in those days, and Jim was much more quiet than than he is now. But, once we realized a few months later that we were talking on the phone constantly, well... So Jim and I have been together for nearly 30 years - our 30th wedding annivesary will be in 2007 (3 days before the 30th anniversary of Star Wars).

By contrast, I can't seem to keep a job and I'm still struggling on finishing my first novel. Oh well, at least Jim's job continues to go well.

#61 ::: joe ::: (view all by) ::: February 08, 2006, 02:39 PM:

Oh that sucks -- and it's all too typical. My excellent GP quit the entire business of medicine because the insurance just killed him. My urologist stopped taking my insurance. So did my other specialist. All this in the last 10 months.

And this is what it's like for those of us who HAVE insurance...

But enough -- you've got my sympathies, T.

#62 ::: Aconite ::: (view all by) ::: February 08, 2006, 04:28 PM:

Teresa, I'm so sorry. May things be much better very soon.

#63 ::: Susan ::: (view all by) ::: February 08, 2006, 05:00 PM:

Teresa, by way of neurologists, have you already tried Michael Thorpy at Montefiore's sleep center?

#64 ::: Melissa Mead ::: (view all by) ::: February 08, 2006, 05:07 PM:

"I wonder how many people here have had the chance to join with someone who's their soul mate. Life's such a crapshoot that it's rather unbelievable that these joinings happen at all."

:raises hand: And considering how shy we both are, and the odds against us even meeting, I'm still in awe. And grateful.

#65 ::: Serge ::: (view all by) ::: February 08, 2006, 05:25 PM:

Life is funny that way, isn't it, Melissa?

#66 ::: Lexica ::: (view all by) ::: February 08, 2006, 05:56 PM:

I wonder how many people here have had the chance to join with someone who's their soul mate. Life's such a crapshoot that it's rather unbelievable that these joinings happen at all.

*also raises hand* Even though every personality or compatibility test we've come across would say "these two people should not spend time in the same room together"...

#67 ::: Marilee ::: (view all by) ::: February 08, 2006, 06:02 PM:

Bruce, my neurologist is prickly, too, and I like her because she says what she thinks. I never have to try and figure out what she means, like I do with some doctors.

#68 ::: BCN ::: (view all by) ::: February 08, 2006, 06:45 PM:

There, there, poor little $&!#. I know of a great sleep center in Arizona and lots of friendly people who'll commiserate with your sleep disorders. In the meanwhile I am having to entrust my glaucomaed eyesight to an opthalmologist because if I pay my eye specialist cash (he quit my insurance company!) the government will cut out all of his medicare patients. I'm sure there's a reason for such legislation, (yeah, I am) but it's one of those mysteries -- like dropping cylert, etc.

#69 ::: Paula Helm Murray ::: (view all by) ::: February 08, 2006, 07:28 PM:

If I get a chance, Teresa, I'll ask, then give you a big hug at Boskone, you deserve it. We're bringing bid and info about voting by mail (vote for 2009 Wordcon is in Nippon....). We will be having a KC in 2009 party at Saturday night. I would like to see anyone who is here at the party, you don't have to particularly support Wordcons, I'd just like to meet folks face-to-face. (We will also have a bid table for at least part of the weekend.)

Jim and I realized that we'd started dating 30 years ago. I went to U Miami (Fla.) my first year of college and the only bright point was the SF club. I folded my tents and took my acceptance at the University of Kansasthe next year, got there, saw there wasn't a SF club and it was some time in February that I had the first meeting (I had to swim the swift torrent of academic red tape....). Jim showed up at the first meeting and the rest, as they say, is history. But we don't remember the date, dammit.


#70 ::: Fragano Ledgister ::: (view all by) ::: February 08, 2006, 07:39 PM:

I wonder how many people here have had the chance to join with someone who's their soul mate. Life's such a crapshoot that it's rather unbelievable that these joinings happen at all!

:Raises hand also:

#71 ::: Melissa Mead ::: (view all by) ::: February 08, 2006, 09:17 PM:

"Life is funny that way, isn't it, Melissa?"

Yes, thank goodness!
We met by computer. By BBS, actually. Boy, do I feel old...

#72 ::: julia ::: (view all by) ::: February 08, 2006, 10:13 PM:

I have reason to think - hell, I have reason to hope - that karma doesn't work that way.

I do hope that the everything falling into place when you cease to expect it thing works out for you.

#73 ::: Brenda Kalt ::: (view all by) ::: February 08, 2006, 11:13 PM:

I'm so sorry. As Edward R. Murrow said, "Good night and good luck."

#74 ::: A New York City Math Teacher ::: (view all by) ::: February 08, 2006, 11:27 PM:

I'm still mad at you for being nasty to my friends Doug and Carlos, but nobody deserves to be SOL without good doctors.

My dad did his pulmonology fellowship at Albert Einstein with Charlie Pollak, whom I believe is part of the Sleep Center at Weill-Cornell.

I would suggest another thing: You need to possess a full copy of your medical chart(s) such that when you seek new medical care you can short-circuit the initial battery of evaluative examinations. As circumstances in my life have changed, I have ensured continuity of care personally by being able to provide physicians with my documented history.

#75 ::: Bruce Arthurs ::: (view all by) ::: February 08, 2006, 11:41 PM:

Laurie Mann wrote:
"I know what you mean about thinking you blew your whole "karmic allowance" on meeting the right person."

Oh, the good news is that sometimes people actually get two miracles in their life. My mom and dad were solidly married for 24 years before Dad died. (I wasn't always sure why their marriage was so solid -- my own relationship with Mom was, let us politely say, "uncomfortable", and sometimes still is -- but it was.)

She stayed unmarried for a long time (Dad died in 1980 -- Christmas Day; his timing left something to be desired), but a few years ago she finally married Tom, who she'd been living with for a few years before that. And the two of them are as solid together as she and Dad were. (Not too, surprisingly, Tom's a lot like Dad.)

(But just in case you think she was completely lucky in love, a few years before she met Tom Mom went through a short -- 18 months -- unhappy marriage with a guy who was perfectly nice as long as he took his manic-depressive medications... which he didn't.)

#76 ::: Kate ::: (view all by) ::: February 09, 2006, 03:00 AM:

*snugs* and Sympathies from us here.

Losing good doctors to "we don't accept that insurance anymore" just sucks.

If you lived closer, I'd hook you up with my neurologist who is just wonderful.

#77 ::: Dave Bell ::: (view all by) ::: February 09, 2006, 04:10 AM:

Love 'n' rockets and US medical care...

I'll stay in England. At least it doesn't feel like the medical system would try to kill me off before I cost the insurance companies too much.

#78 ::: Mina W ::: (view all by) ::: February 09, 2006, 05:53 AM:

Teresa ó Very sorry to see this one too. After being offline for so long, coming back and reading about the cylert was bad, now this.

Dave Belló Sometimes it seems like you're exactly right, they do try to kill us off before we cost the insurance companies too much money.

Did you see that Michael Moore is looking for health system horror stories?
here

#79 ::: Serge ::: (view all by) ::: February 09, 2006, 07:06 AM:

So, a few more people than I expected did manage to find their soul mates in the Chaos of Life (says Serge pedantly and pompously). I wonder if it's a thing about the SF world. Maybe the next worldcon should have a panel title True Science-Fiction Romance Stories. To be hosted of course by Our Hostess.

And how is the search for a neurologist going, Teresa?

#80 ::: Rob Hansen ::: (view all by) ::: February 09, 2006, 08:04 AM:

Jeez, but you're having a run of dreadful luck here, Teresa. I hope things improve for you on the medical front sooner rather than later.

#81 ::: Sandy B. ::: (view all by) ::: February 09, 2006, 10:05 AM:

(Nothing to say, but still rooting for ya.)

#82 ::: John Farrell ::: (view all by) ::: February 09, 2006, 10:10 AM:

Dear God, Teresa. I'm so sorry.

#83 ::: Eve ::: (view all by) ::: February 09, 2006, 10:13 AM:

Aw crap. That is really terrible news about the sleep centre, I hope you can find a good doctor soon.

I wonder how many people here have had the chance to join with someone who's their soul mate. Life's such a crapshoot that it's rather unbelievable that these joinings happen at all.

It happened to Jeff and me, too. We're both the people that everyone else thought it was statistically impossible to find a match for. Of course, we always have to decide whether to tell new friends "We met on an internet bulletin board devoted to a now-defunct comedy website" or "We met at a party in London". The latter isn't technically a lie, as the first time we met in real life was a big board meetup, and it was quite a party...

#84 ::: Faren Miller ::: (view all by) ::: February 09, 2006, 10:45 AM:

It's all starting to sound as conspiracy-like as that 9/11 ad, but I suppose it's really another classic example of "sh*t happens." Well, damn! I can only add to the chorus of shared anger and sympathy for your plight, Teresa.

Though I don't believe in karma points, love can do a lot to help us through. I'm another lucky one there -- dating back to the partnership, not the more recent marriage, I've spent the last 23 years with Kerry Hanscom (and look forward to many more), and he was oh so good to me when I had my own first encounters with a neurological glitch.

#85 ::: Charlie Stross ::: (view all by) ::: February 09, 2006, 11:00 AM:

Oh shit. I think everybody's already said it, but: I hope some good luck lands on you soon.

#86 ::: Serge ::: (view all by) ::: February 09, 2006, 11:02 AM:

Is your Significant Other somehow involved with F/SF, Faren? I mean, is he acquainted with the stuff and does he even read it, or at least can he deal with it? My own opportunities for finding Love (how corny that sounds) were rather limited, and yet I did find someone who is definitely involved with F/SF. I don't think either of us would have been able to be with someone who thinks this Skiffy is all crazy stuff.

#87 ::: Serge ::: (view all by) ::: February 09, 2006, 12:08 PM:

My question applies to everybody who's raised a hand about finding their soul mate. I notice that no person of the male gender - aside from yours truly - has said anything on the subject.

#88 ::: Hamadryad ::: (view all by) ::: February 09, 2006, 12:49 PM:

what if I already got the pony? I married Patrick, and I work as a science fiction editor. Maybe I blew my entire karmic budget on those two items.

You haven't come close to blowing your karmic budget. Marrying Patrick and working as a science fiction editor sounds like a good deal, but the way I figure it, Patrick and the people whose work you edit also benefit from the arrangement. Therefore, you are still owed a pony. And I hope you get it soon.

I wish I could do more than just sympathise. I was really hoping things would get better for you. :(

#89 ::: Nancy C ::: (view all by) ::: February 09, 2006, 01:05 PM:

Teresa,
I'm going to send you an email telling you the city I live in; not horribly far or expensive by plane, and we can put you up for a few nights if you find a good neurologist here. We have a few colleges and universities so there might be something....

#90 ::: bryan ::: (view all by) ::: February 09, 2006, 02:28 PM:

shouldn't you be shooting for a pegasus?

#91 ::: Suzanne ::: (view all by) ::: February 09, 2006, 02:44 PM:

"I wonder how many people here have had the chance to join with someone who's their soul mate. Life's such a crapshoot that it's rather unbelievable that these joinings happen at all."

Not I, alas. Nor do I have a pony, or a physician I'd regret losing. But if I had any of those I'd happily share them with the rest of you. (Well, maybe not the soul mate, but certainly the pony.)

#92 ::: Lenora Rose ::: (view all by) ::: February 09, 2006, 02:55 PM:

shouldn't you be shooting for a pegasus?

No. Teresa is owed a very nice, well trained, highly intelligent pygmy mammoth. With its own zeppelin.

(Sympathies, Teresa.)

#93 ::: Sandy B. ::: (view all by) ::: February 09, 2006, 03:35 PM:

"Soul mate" reminds me of a Certain Friend of mine who kept saying things like "Where's the one for me?" and "When does it get to be my turn?"
I finally told her to do what we did: meet someone, wait 15 years, and marry them.

#94 ::: Nicole J. LeBoeuf-Little ::: (view all by) ::: February 09, 2006, 05:33 PM:

/me adds more sympathies and virtual hugs to the accumulating pile, for lack of anything more constructive to do.

Wish I were able to give them to you in person at Boskone. Can I nominate someone to carry my good wishes in proxy? You know, like stockholders voting by proxy?

#95 ::: mary ::: (view all by) ::: February 09, 2006, 06:48 PM:

Rats. All these people who have found their soulmates--it's making me feel downright sorry for myself. Well, maybe I should have hooked up with someone from the sf community instead of marrying a professor in the math department in which I was a grad student. Math faculties are not the best places to look for a spouse--they tend to be bags of mixed nuts. But then I'm a mathematician, so...see? The point I was trying to make is in there somewhere.

#96 ::: Bruce Arthurs ::: (view all by) ::: February 10, 2006, 09:15 AM:

Serge, were your referring to your question to Faren, whether her own soulmate was into SF/F? Because if it was your original question, about finding a soulmate in the first place, I was the first person to respond. And the last time I checked, I seemed to fall within the normal operating parameters of malehood.

To answer the question: yes, Hilde was/is deep into SF/F. In fact, it was while driving her to one of the local club meetings that we started to talk, and found out that both of us had been thinking "What if...?" about the other.

That was an... interesting... evening, to say the least.

#97 ::: Serge ::: (view all by) ::: February 10, 2006, 09:26 AM:

Sorry, Bruce, I missed your own post on the subject of romance among SF people. Sue and I had been penpals since some time in 1983 when we both decided to attend the LAcon in 1984. I flew in to SF, we drove down the coast along with young Toronto fan Becky Slocombe and a friend of hers. The con was something of an emotional roller-coaster for Sue and me. Becky and her friend flew back to Toronto from LA so, on the way back to SF on I-5, it was just Sue and me and talking and talking and never noticing the distance we were driving.

#98 ::: elise ::: (view all by) ::: February 10, 2006, 11:29 AM:

Oh, crap. Strength to your sword arm, sister. More support, aiding, abetting, snarky amusement, and general helpfulness available in person soon.

#99 ::: Barbara Gordon ::: (view all by) ::: February 10, 2006, 02:37 PM:

I am so sorry to hear about these further reverses. And I wish I could do something, I mean, something useful. I'd cross my fingers, but that makes it hard to type.
Recently I found out that a friend's husband is one of those who uses Cylert for his ADD, and he is also one who suffered liver damage from it. But he'd rather have liver damage and an otherwise normal life. The difference between Cylert and the substitute meds is clear in the difficulty he's now having with his physics course.
I sent them the url for the first Cylert thread, since there was a lot of useful advice and discussion on it.
-Barbara

#100 ::: Faren Miller ::: (view all by) ::: February 11, 2006, 11:11 AM:

Serge et al. -- sounds like this blog needs a Valentine's thread for all the happy couples (and to keep this thread a bit more on topic!). K. loves horrible old SF/F movies and weird pulp comics; that's pretty much the limit of his involvement with genre, except for a few crazy board games and reading some of the galleys I get.

#101 ::: Serge ::: (view all by) ::: February 11, 2006, 11:41 AM:

Actually, Faren, is Teresa who first brought up that her finding Patrick used up most of her karma thus her bad luck with medications. But, yes, that's kind of pushing it a bit, but some threads have gone much farther off course.

As for your hubby, sure, his F/SF involvement isn't as deep as yours, but at least he doesn't think you're weird because of your own interests.

#102 ::: Epacris ::: (view all by) ::: February 11, 2006, 01:40 PM:

Lenora Rose: Snap!
Was thinking exactly that.

It's particularly nice how they can sense when you're feeling a bit bleak, come up, lean into you with that slightly scratchy hair and fix you with their deep gold-amber eye. It can be so comforting.

#103 ::: Paula Kate ::: (view all by) ::: February 12, 2006, 01:39 PM:

Wait, Tim Kyger intro'd you two?

Tim dragged Glen to my room party at Westercon 31, and that's how we met. 27 years and counting.

(Tim, just exactly how many ponies did you stash in that foldbox, anyway?)

pk

#104 ::: Georgiana ::: (view all by) ::: February 12, 2006, 11:09 PM:

Teresa I am so sorry to hear this. It's difficult to find a good doctor in the first place, dredging up the energy to find a new one can feel impossible.

#105 ::: Laurie ::: (view all by) ::: February 21, 2006, 06:59 AM:

Serge wrote:
"I'd say that was romantic, Teresa. I wonder how many people here have had the chance to join with someone who's their soul mate. Life's such a crapshoot that it's rather unbelievable that these joinings happen at all."

Me, too! I downloaded a program my husband wrote, had problems with it, posted on his forum for help, started chatting with him to fix the html and ftp stuff that made no sense to me, then flew from Canada to Sri Lanka to meet him in person just shy of two months later, and we were married about eight hours later. :D Bonus round: We both write science fiction.

Theresa, your medical situation sucks. I hope it gets better, and soon.

#106 ::: Laurie ::: (view all by) ::: February 21, 2006, 07:07 AM:

Serge wrote:
"I'd say that was romantic, Teresa. I wonder how many people here have had the chance to join with someone who's their soul mate. Life's such a crapshoot that it's rather unbelievable that these joinings happen at all."

Me, too! I downloaded a program my husband wrote, had problems with it, posted on his forum for help, started chatting with him to fix the html and ftp stuff that made no sense to me, then flew from Canada to Sri Lanka to meet him in person just shy of two months later, and we were married about eight hours later. :D Bonus round: We both write science fiction.

Theresa, your medical situation sucks. I hope it gets better, and soon.

#107 ::: Bryan ::: (view all by) ::: February 21, 2006, 02:33 PM:

wow, Laurie's story gives hope to programmers everywhere... well, except for the ones that suck at product support.

#108 ::: Christopher Davis ::: (view all by) ::: February 21, 2006, 03:11 PM:

Bryan: and note that you have to make sure your intended soulmate has problems with the program, too.

#109 ::: Xopher (Christopher Hatton) ::: (view all by) ::: February 21, 2006, 06:10 PM:

Christopher (good name!), writing a program with bugs in is like making sure you put a flaw in your knotwork...it's not something you really have to work at!

I'm entirely certain that my soulmate is into SF, and language stuff, and music stuff...I've never asked him. I will, just as soon as I meet the guy.

Elusive lot, those pesky soulmates.

#110 ::: Nancy C spies comment spam and is slightly amused at its message in ::: (view all by) ::: January 08, 2007, 10:10 PM:

soma, spam, soma, spam, soma.
O brave new world! O choices!
O, which now to pick!

#111 ::: Teresa Nielsen Hayden ::: (view all by) ::: January 09, 2007, 12:36 AM:

All gone now. Thanks for the heads-up.

#112 ::: Ann Moss ::: (view all by) ::: September 17, 2009, 06:39 PM:

Is this room about narcolepsy? I'm sort sick w/ an episode lately, so when I read sometimes it doesn't make sense. Every doctor I go to or referred to doesn't know what it is, and even the paramedics, hit me, to see if I'm unconscious instead of knowing what cataplexia is. I even had an Narcolepy episode in my doctor's GP and she want me to go to a psychiatrist, as I have accompanied panic attacks, they think because I have PTSD from being beat up most of my life, due to having narcolepsy.

My only real question, as I already know there is no cure, and just 5 different kinds of speed that try you on to see if they keep me awake, but then I start have more seizure like things. More exhausted, and longer lasting catplexia and I finally found one doesn't feel like speed. But instead of sleeping 20 hours a day I sleep 6 hrs. My body just rebels with headaches, flare ups with fibromyalgia, if that is real condition, and not a product to sleep disorder.

Back to the real questions. Can lights at stores, doctor's offices, cause siezures like episodes or aggrevate the cataplexia (narcolepsy). As I seem to have an episode every time I go to a store or doctors' office & that is all I do that seems to correspond with dramatic reactions. And it is all I can do, outside of home.

response to hub bub here:
Yes, our medical situation is at it all time worst, in the entire history that I know since the the great depression, as my parents and granmother lived through them. Life adjustments have to be made. One is sticking together as people, and family, a luxury Americans have had till now. Yeah, let the govenment take care of Mom. You know it our attitude too.

War is for politicians, we are innocent bystanders, and really have nothing to argue about. Seemingly is nothing we can do about it just like our illness. Make the best of it, share you own opinions, respect others, and see what in your life can do to change. I mean we didn't get like this if their wasn't something wrong with our attitudes. I know people who refuse to work for $9.00 an hr because they are too good and are worth more, in their minds, then wind up on social services, or make no money and add financial pressure. All those things that you are too good for gets outsourced to other countries, which means they get our money and it doesn't, then that money gets spent in other countries instead of own. So many reasons, why we can't blame this one or that one. But the best you can do is share information.

Example: Medicare's part D, pretty much does not cover any of medications anymore. Oddly, I asked my new AARP card had any discounts, NO. But CVS/Rite Aid takes AAA (auto club members), yeah it was $80.00 prescription that was reduced to $9.00. Costco sell uncovered drugs at an amazing discount, however, only carry certain drugs. That I share with you that are disabled, and information that can help you survive.

Ann M.

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