Male and Female Imponderables--Dancing in the Dark
POSTED BY: Tristan
UPDATED: Tuesday, August 22, 2006 21:40
VIEWED: 20103
PAGE 17 of 18
M4P, what was the patient advocate experience like? I haven't thought about using one up to now, so I know basically nothing about it. For the past two and a half years since this pain thing started up, I have taken the track of being persistent and consistent. I document everything, keep records of when I take meds and how I'm feeling, and have gotten very good at describing the exact type of pain, and the exact patterns that it follows.
I haven't gotten to yelling or screaming at the doctors, but I'm quick to drop docs who aren't working with me or who aren't taking me seriously. I'm not going to waste my time trying to convince someone who already has their mind set on something utterly incorrect (Fibromyalgia, Chronic Fatigue, over-weight (wtf??), depressed, etc), but I don't want to be seen as a whiner or someone who is just trying to get attention and/or medications. Far, far too many women with symptoms similar to mine get written off by doctors.
I seem to have a pretty good set of doctors right now. They take me seriously and they give me the medications I need (I'm on five prescriptions right now, though only three of those are for the pain-inducing autoimmune disease specifically), and listen to my feedback on how well a medication works for me. The major failing of this team, and all the teams of doctors who came before, is that they can't figure out what the hell is wrong with me. They've run all the tests they can think of, so now we're down to doing what we can with drugs to make my life as normal as possible, and waiting for a new symptom to emerge so that we have an idea of where else to look.
I'm doing research on my own and continue to take possible matches to my doctors, and ask that they test me for this or that. So far they've always tested for what I request, but so far nothing has come up abnormal (beyond the things I've already been diagnosed with, that is). I'd say we're 95% certain that it's autoimmune related (I have two other autoimmune diseases, which puts me at high risk of developing another), so that helps narrow things down.
The doctors keep warning me that even if we do find out what it is, they may not be able to change my treatment all that much. Whatever I have isn't life threatening enough to justify some of the extreme autoimmune treatments (my primary doc has joked that if I was more ill, he could send me to a Mayo clinic to get diagnosed). But in the end, I just want to know what it is, so I know what developments to watch out for, what the long term prognosis is, etc.
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CK, I have to say you really are inspiring. You seem to be facing some huge obstacles in life, but you do so gracefully. My own current trials are far less and there have been times I just want to curl up in a ball in the corner....
Thanks Rugbug!
I've heard that a couple of times here, and it's always a bit odd to me. Other than my health, my life is pretty damn sweet. I'm extremely happily married, my husband and I both love our jobs and are doing what we always dreamed of doing, I'm growing in my career, we just bought a condo, we go to the beach and/or Disneyland nearly every weekend, I have a fantastic relationship with each member of my family, who are all healthy (beyond the autoimmune diseases that seem to plague us all) and happy, and I have a cute haircut. 
What else could a girl want? The rest of my life is so great that I feel bad even complaining about my health. Course, it doesn't let the doctors off the hook, and it doesn't mean that I don't hate my body, but compared to what other people have to go through, or even to what my life has been in the past, I really shouldn't complain.
Then again, ask me later this year, after I've caught the flu because I can't take frickin Purell on the airplane anymore, and my doctors won't give me the flu shot because they don't know what it'll do to my immune system. When my joints feel like I'm running a fever for five months straight, and my feet are so cold that I'm wearing three pairs of socks
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ack i should be out the door, but wanna post first...
NV, Imho, unless you know where the children are going (ie, a place that has a public school system and such), you may want to consider try to keep them put for the time.... Ok, I dunno, but if your sister is as unreliable geographically as you say, if they arent settled in a year or two, it'll be a pain for the little ones to get through school. And yes, vent all you want!
CK- :( :( :( There isnt much I can say, just hang in there, and uh.... we only ever judged ya for your mind, hehe, so as long as you have that! 
Seriously tho, keep up your flying.
As for looking in the mirror? ugh, generally i think i'm sorta middle, little on the fat side, but was funny, yesterday i just had a shower and my hair was all poofy (think Angel without the product) and I thought... 'hmm, i actually dont look that bad like this'!
Eh, strange stuff.
GO TEACHERS GO!!!
"But, these strong women characters?"
"Why aren't you asking 100 other guys why they don't write strong women characters?" -Joss Whedon
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Quote:
Originally posted by CaliforniaKaylee:
Thanks Rugbug!
Well, like someone else said, it always seems strange. We all seem to just face the trials handed to us. What else can you do? I've had people tell me that they wouldn't have been able to go through my latest experience as gracefully as I have and I think they're just strange. Yes, having a badly broken arm that just won't heal while living alone is a pain, but in the grand scheme it's tiny. I end up feeling a little guilty during my (very ocassional) pity parties because so many people really do have it worse. And hey, not only should I recover to some semblance of normalcy (at least I am really hoping for that) but I've also learned to do so many things with my left hand, it's kind of cool. I can brush my teeth, write, even eat with chopsticks. My left hand is no longer a useless appendage.
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"The power of accurate observation is commonly called cynicism by those who have not got it." - George Bernard Shaw
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OK here's an imponderable. How can anyone in a relationship be a complete cold hearted *&(@#$? I have a friend who is being one right now IMO. Dating one guy while talking to an ex about the chances of them getting back together. Which is apparently perfectly fine as long as the current relationship "isn't too serious". Evil!
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Quote:
Originally posted by CaliforniaKaylee:
M4P, what was the patient advocate experience like?
In my case, my back was out and I was on the sofa, taking painkillers, for a couple months. About once a week I'd drag myself to the university med center and beg them to do something besides give me meds, but somehow I always ended up leaving with more pills in my hand. (Does that seem right to you?)
Eventually, I saw a visiting doctor who actually told me what was wrong with me, and got me an appt to see a surgeon at the city hospital. The regular docs found out, yelled at him, and made me cancel my appt. So, I called the advocate. The next day, I got permission, and I had surgery a few weeks later and I've been fine ever since.
So my situation was different from yours. I knew what was wrong with me and had a treatment available, but they were pretty much refusing to help me (I suspect it was their policy to ignore back pain as long as possible. These idiots could have killed a friend of mine because they kept telling her she had an STD, when actually her appendix was near bursting. Good thing she took none of that BS from them!)
It sounds like your doctors aren't evil like mine were, but they are at the edge of their knowledge. So... my first suggestion was the research thing, which it sounds like you're all over - good for you!
The only other suggestion I can think of is that you try to find other doctors who specialize in auto-immune problems, and do everything you can to go see them. It can't hurt. And if your HMO makes a stink, that's when you start needing advocacy, although I hope it doesn't come to that!
And never worry about being seen as a whiner - if anyone sees you that way, they're WRONG!!! You have a legitamate reason to seek treatment!
I hope you find out something! That's almost the worst part - not knowing what it is or where it's going. Don't know if it helps, but I'll send lots of positive thoughts your way...
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I'm the president. I don't need to listen.
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On the issue of cold hearted B&%(*%s, I think everyone has that side. Just some choose to use it to their advantage. In our world of instant gratification and selective kharma there seems to be little concern in more than just a few circles. I just see the idea of dating as such a load of bull. I love the idea of romance, but honestly I grow weary of looking. Seems to me that there is just too much missing for anyone to latch on and keep hold of.
Who is honestly willing to put in alot of work for anything other than just themselves these days?
Maybe some are just beyond saving. Anyone ever locked up the brakes in their car/truck and made flat spots on their tires? And you drive on feeling the flat spots every so often. But strangely all four tires sometimes hit the flat spot at the same time. That is the feeling I can't shake right now. The flat spots of an abrupt stop.
Gotta stop looking to be saved.
ADD: Sorry Zeek. Got too many questions to give a straight answer for anything. Guess thats why I didn't get any of the cooks birthday cake.
Gotta go. Baby V has a doctors appointment, (Oh Boy!) Have a good evening.
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Quote:
Originally posted by nvghostrider:
Who is honestly willing to put in alot of work for anything other than just themselves these days?
They're out there. You've just got to know where to look.
Flat spots are useful for re-evaluating our lives. The trick is to not get stuck. We are never slaves to our flat spots unless we choose to be.
M4P: Tell us about this guy. Nice? Funny? Cute? etc....
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"The power of accurate observation is commonly called cynicism by those who have not got it." - George Bernard Shaw
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honestly i don't think cold-heartedness and strongly selfish instinct's are unique to our age, or our society, i think they've always been a part of people, and probably always will be. I long ago accepted that people are selfish, using, manipulative and lie to themselve's a great deal, in fact i accept all of the above about myself too. any time i try to explain this to people they get as far as assuming i'm a self-loathing misanthropist and don't go any further, but i accept all this, i accept that people are not very nice, but, that's okay with me, i can deal with that, and still like them for who they are, and still find the things in them that are worthwhile. it's no better a way to be, and it lacks a bit of the naive optimism that can be endearing in people, but it sometimes helps if you're feeling like your at odds with the human race. just, acknowledge and accept the worst things about them, and let that be okay ^^
CK, you know, i think it's the fact that you take it all in your stride and say 'well, everything else about my life is really pretty good' that makes people say you cope so well. i've known alot of people to whom that was just such an alien idea, and in your shoe's would just give up and let it be all, so i'm inclined to think it IS admirable, but because of the things you think of as normal, and such a simple thing ^^ (if that made any sense at all i'll eat my hat, and i don't want to, because i like my hat...)
and thanks MSG for the sympathy, helps to get a sense of perspective ^^
and yep, they reckon there's a bit of a cause NVG, stress and exhaustion related to my work, another reason to get busy with the job-hunting ^^ sounds like you had a rougher deal then me, =S i'm only on the one for a month, managed to talk him down by pointing out that i'm weak-willed and don't want to wind up dependant xD
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jailbait.
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Quote:
Originally posted by RugBug:
M4P: Tell us about this guy. Nice? Funny? Cute? etc....
I'm so glad you asked...
He's a computer salesmen, but going to night school in massage therapy because he hates the 9-5 job thing. (I get my massage and dinner date next week, woo-hoo!)
He's very sweet, very put together mentally and emotionally. Not overbearing, not a wuss. 6'3" and well built. Really likes touching and cuddling. He brought me flowers and says lots of nice things. Also - has a big ole motorcycle and a big ole truck, but he plays guiter and was an English major in college. Renaissance man - sigh!
We've only had two dates, because he lives over an hour away, but the first date was all day and the second was all weekend. So I don't know all the details about him, but I'm all fluttery. It was a good fit right away. It's wonderful and scary, you know, when it's this new...
So here's a question that's been on my mind: he brought me flowers, and I want to do something equivalent when I visit his town next week. But I feel like there's got be something better than flowers to give a man. Wine's too easy. Opinions???
Guys - what would you like a woman to bring you that's classy and says hey - I like you!
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I'm the president. I don't need to listen.
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socks
h'mmm, tougher call, wine is a good solid option, but, also a wee bit h'mmm, maybe wine and something else? some nice chocolate? although that's maybe got a bit of the flower's stigma attached. does he drink whiskey? nice bottle of that could be a wine-subsitute with a little more personality if he does. that's all i can think off off've the top of my head, don't tend to put too much thought into what i'd like to receive.
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jailbait.
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