felix thinking

How to talk to someone who is chronically ill...

I complain about my health. That makes other people uncomfortable, I know. We're not supposed to talk about our health in this culture. For one, that's something personal. So personal that we even protect it by law with doctor-patient confidentiality. For two, we don't praise weakness in this culture, and admitting health problems is doing exactly that. Or so it seems. But for someone who is chronically ill, it's a little different.

See, if I were you I'd be complaining about my job, or traffic, or stupid people I have to deal with on a regular basis. We are a complaining species. But I don't have a job or a commute and the number of people I deal with on a weekly basis is small. I deal with my health. That's pretty much all I deal with. That and doctors. I'm complaining about what I know.

Please continue reading at http://makethislookawesome.blogspot.com/2011/12/how-to-talk-to-someone-who-is.html

This one is important - Patient Catch-22


"You are your best advocate." How many times as a patient have you heard that it's our responsibility to stay informed when it comes to our health? Whether it's Dr. Oz, The Wall Street Journal's column The Informed Patient, or a website dedicated to patient care, all of them suggest staying informed. But when it comes to working with doctors, many absolutely despise well-informed patients. Doctors have such a bias against informed patients that they have a term for it: cyberchondriacs- someone who thinks they're sick just because they've researched too much online. This Catch-22 is, in my experience, potentially deadly.


I don't know about you, but when I think about words, usually a specific connotation comes to mind immediately. I get a picture in my head, and sometimes even a little scene. So when I think of the word, "reformed", things like AA meetings and folks shedding orange jumpsuits comes to mind. I forget the pieces of the word: re-form, to make again.

That's what I'm doing with me. My health is never going to be great, no shocker there. But i'm a creative, innovative and tenacious person. If anyone can figure out how to operate a body like this, it's me. No, I'm never going to be a rock star, but I don't want to. (Strangely enough it was because I dreamt I was famous and realized that simply getting my oil changed would be a nightmare because the fame would get in the way. I'd never have a 'normal' interaction with anyone again.) I'll leave the stardom to folks like donnaricci. ;)

So much of what I use to love in the way of activities is gone to me now. There's nothing to be done but make peace with it, and I'm getting there. I'm a passionate person, so I can get frustrated, but I'm learning to cool down. I have to... it's immediate impact can be felt on my health, and it saves me from days of consequences (since stress is manifold). I need to re-form myself. I have *tons* of likes. It's getting down to the likes I can do and investing my me-time in that. And that doesn't mean completely stamping out my extrovert side either... do you know how fanatical model train fans can get?! I just need to find a fandom that I want.

That's been the real rub for a while. I haven't known what I wanted. Well, I haven't known what I've wanted in this reformed body. No dance clubs, no movie halls, no conventions, no loud... unless I know it's worth it: the 50th Anniversary of the Croquette Game in Pier Cove was definitely one. That cuts out most of the relatively inexpensive forms of social entertainment. It also cuts out large-person events, which I've always loved. I am a metropolitan girl. Living on Long Island as a kid pretty much ingrained the big city into me. I love its exhibitionistic anonymity. Again, though, that's the old me.

This new me prefers neighborhoods. I like the more sensibly-paced lifestyle. Small town is nice. Military tech industry towns are great (worldly attitudes, generally highly educated, well-mannered). I've a scientific mind. I like logic and proof rather than emotional arguments. I love economics, physics, chemistry, medicine... I'd love to back to school someday, get my PhD in English. I'd want to do it on Semiotics... (thank you, SLU).

I like the BIG, tough problems. I can move a mountain one teaspoon at a time if I'm adequately interested in the subject. That's included in the *new* me. I wrote my paper on migraines when I was in the throws of the worst of them. I didn't understand the science, but I taught myself (Wikipedia is a beautiful thing). I used 3x5 cards and wrote down all the terms I didn't understand & their explanations. I sat up at I-HOP with a 4" stack of scientific articles and just organized the papers until *I* understood it, and then I wrote the paper to explain what I'd just learned to someone else. I took it in to my neurologist to make sure I got it right, and she said I nailed it. I'm still a professional writer.

That's something I really forgot when I got sick: I'm a professional. I made mid-level professional by 28! That saved my ass when it came to Social Security Disability. I was VERY lucky my parents taught me to work hard. It was also a stroke of luck that I happened to love computers (thanks Dad!) and language (thanks Mom!) right on the starting edge of the tech boom. I was a technical writer before there were certificates or classes offered for it. COMPLETE luck.

Now I've got the wisdom to go with that mid-level pro status. And if I'm cautious, I could ride that to some huge personal success. It's just a matter of adjusting my vision, and I've been doing that. The things in the moment like to wave flags & jump up and down as if they're important, but there's another moment behind this one (good Lord willin' and the crick don't rise). I have to weigh my immediate concerns with my long-term goals and flat-out ignore a lot of what my mind/body scream for.

Hey.... I think that's called "growing up." :D

Suppose two children are fighting....

1. Wait.
2. Listen.
3. Now what do you suppose she means by that?
4. Wait.
5. Listen.
6. That's what he thinks you meant when you say that. Is that really what you mean/intend?
7. Repeat 1-6 until an accord is reached.
8. Now that you know all this, what can we do differently next time?
9. What else?
10. Repeat 9 until exhausted.
11. Given all those options, can you agree on one that works for both of you?
12. Shake on it.

[repost] R.I.P. Phil Harris, Captain of F/V Cornelia Marie :(

Everything I needed to know I learned from Baring Sea fisherman...
[first 25 were from July 26, 2008]

1. Mother Nature is bad enough. Bitching doesn't make the experience safer or better.
2. If it ain't about life or death, it ain't big enough to be serious about.
3. If it is about life or death, everything else can wait.
4. It may be a shitty job at the bottom, but that's where the learning starts. You'll need all those fuckups to survive once you get to the glory job of working on the rail.
5. Superstitions are superstitions for a reason. And they often work better than technology.
6. If they're laughing at you, it's because you're funny. Do yourself a favor and laugh with them.
7. Good enough is just that: good enough.
8. You know you're lucky when you're only lucky *exactly* when you need it.
9. Don't gainsay the captain.
10. Fate is only understanding that things never make sense at the time, even if we think they make sense.
11. I will never argue the price of King Crab.
12. You got to be more than a little crazy to want to do those jobs.
13. Not being cut out for the job isn't a bad thing.
14. Age and treachery will always beat youth and enthusiasm. Until it doesn't.
15. If you win a wager, tithe to the fallen soldiers.
16. It's called "fishing" not "catching".
17. Pranks are like fishing: they require a lot of work for a smooth execution and they're "serious" business (precisely because they're not serious and they keep everyone else not serious).
18. The most dangerous thing is just getting *on* the boat.
19. The Coast Guard is a harder job than any of the other Armed Forces.
20. Real Life is FAR more interesting than fiction or "Reality" TV.
21. You know conditions are bad when the Coast Guard is in crisis.
22. The Baring Sea does not have a sense of humor.
23. When even the SEAS are confused, you're in a world of trouble.
24. Be very afraid of the people who are willing to fish in sub-zero temperatures, 100mph winds, and 50-foot waves---all at the same time. Be even MORE afraid when their Captain is afraid.
25. When Capt. Sig is whining to go home, you know it's been a bad Opi season.* [added during the 2008-9 season - gods, that was a bad winter in Seattle!]