My Kind of "CF Day"

anonymous

New member
Most of you may know my CF is not as "involved" as other cases, due to the fact that I may be qualified as the "atypical CF Patient". However, I have my days, and today is one of them!
It started in the middle of the night with a stomache ache and coughing. I even woke up from a sweat while I slept, and my covers were damp. It wasn't as bad as some other times; in those cases, I almost have a "puddle of sweat" on the bed. Between the two, I wake up in the am exhausted from a lack of sleep (went to bed about my usual time of 10:30pm), and sore knees (sometimes something I get when I have a bad stomache ache or as an indication of catching a cold).
Well, this morning, I've probably been to the bathroom at least every 90 minutes, and still have discomfort in the lower abdomen.
In my case, the frustrating thing of it all, I want to take the day off, but I can't. I come into work, and since I've got a jerk of a boss who can't see I'm in discomfort, has to add to the discomfort with his "driving into me" about finding my errors in doing something at work. Unfortunately, some of us who've endured so many stomache aches, have been able to go throughout a day with a "poker face", hiding the pain and irritation. (I've had stomache aches so bad, I could hardly stand straight! But those cases are rare) But doing that often enough, doesn't give much people a clue as to how bad you feel.
Understanding this forum is for us with CF, and the place for "venting" sometimes, well, I gotta vent! I'm interested in what kind of feedback those of you who read this go through. This forum is a form of sharing, and I'm willing to hear what I shared with you.
I hope I feel better after lunch--time to unwind a little-- but I doubt it because that jerk will be back, too!
At least one thing that helps, if I eat "Udon" for lunch, it'll be easy on the stomache, so I don't have to go the rest of the day without eating...I found in some cases, it requires waiting until after the stomache ache "passes" before having another meal.
 

JazzysMom

New member
I am sorry to hear of you problems & I was one to go to work & put on the poker face. I have done it thru pain & hemoptysis. The pain was a lot easier to hide then the hemoptysis because its difficult to talk on the telephone as blood is gurgling up your thoat. Was it stupid for me to do it....yes, but I REFUSED to let CF be the reason for missing work. It was/is a control issue on my part. It was not because I had an unkind/uncaring supervisor or that I didnt want the people to know that I had CF because they all did. Just for the record.....I learned realy hard with the hemoptysis not to play because I ended up handing up on a patient & running to the bathroom (which thankfully was right next to my office) & hugging the toilet while yelling for help. A co worker heard me, came in & got a slew of other co workers to take me to the ER. Thanks fully my office was up the hall from the ER. I worked at our local hospital.....................talk about "devotion" or should I say "ignorance" on my part!
 

Mockingbird

New member
What is udon? It sounds familiar, but I can't place it. Just curious.

i know what it's like not to be able to take days off. in my case it's because I am one of three employees so there's really no one to cover for me. And I think i know the stomach aches you're talking about, but I'm not sure. Anyway, I hated them.

I'm sorry you have a jerk boss. jerk bosses suck. If only there were a way to give him your stomach ache, all would be right with the world. =-) Hope you're better soon!
 
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65rosessamurai

Guest
Thanks for the reply! I'm feeling a little better now.
It seems that just before I left work, the boss hands me additional work, and with the way he presented it, it turned into an argument. I swear I think he's just picking on me for some reason! (I suspect prejudice--but that's hard to prove in their society!)
Good point, Mockingbird! I'm thinking one way to get back at him, since he sits right next to me, leave a "filled kleenex" after another coughing spell! Sometime just before lunch ought to add to it!
He'll probably get pissed, but I'll probably have to control myself from laughing by then!

The "Udon" is a Japanese Noodle, usually as a soup. like chicken noodle soup. but with a Japanese flavor. Usually, "Wakame" or seaweed, is added to it for flavor. The Udon can also be served cold. which is great for hot summer meals. The one advantage to Udon is that it is VERY easy to digest, and that's why I had it for lunch.

For the past year, I've been taking so many days off--some for health reasons, some for family related--and my paid holidays are quickly decreasing. So, for this day, I had to grin and bear it!

I've never had a boss that I hated so much! I'm even considering if he dies before me and I'm living in the States, I'll make a special trip just to piss on his grave! However, I may find a long line and a serving machine that would say "Now serving 49". or something!
 
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closetcf

Guest
Hey 65rosessamuria! Someone told me about you and I joined this website. wow--this is almost as addictive as ebay. Anyway, I used to live in Japan (I just came back to the US in August) and I was actually just diagnosed while being there. Crazy, huh? I had to go to Japan for someone to catch on that I had a "white person's" illness. ANYWAY, I just wanted to say hi and see what you are up to over there. Do you live in Tokyo like all the other gaijin, ha ha? I lived in Shikoku for JET and Kyoto for study abroad. I'm getting married to a Japanese guy and its really comforting to know that you can live with CF in Japan. (how do you get meds by the way) That is/was actually a big concern for me. I went through my own work-place drama when my doctor told my school that I had this (darn no privacy in japan!) They said that "my body is like a time bomb and could go off any day" and told me that I should go home. Whatever! I stayed on, damnit. And I never took "byokyu" GAMBATTE NAA!
 
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65rosessamurai

Guest
EEHHH!! Sugoi na!!
Someone who actually survived living in Japan besides me!!
After reading your reply, I had to answer.
Living here for the past 12 years, I never GOT any meds! Staying active in Martial Arts must have been the secret! I live in the Osaka area (Not like the rest of the gaijins!). Kansai Ben!
Interesting how "Infamous" (or, is it "Famous"?) I can be--I'm moved--kandou shimashita!
You didn't mention how long you were here...how long? The fact you were actually diagnosed is amazing...CF is extreeeemly rare in Japan.
Only recently, I had found a doctor who "heard of" CF, and was willing to do some research for me, so he can prescribe the right medications.
My second wife (The first was a selfish *****!) <img src="i/expressions/face-icon-small-smile.gif" border="0"> is quite resourcefull, she found something similar to Pancreas on the internet! It actually seems to make a difference, I've been on it for almost a month already. As for any other meds, no such luck so far!
My company has NO idea I have CF, much less what it is!! (However, I'm looking for a better way of life right now!)
This forum is a bit addictive, but i've never tried E-Bay (yabai!!)
How's your Japanese ability?
 
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closetcf

Guest
HI! wow-fast reply. ooh wait you are on J-time. I was there for 2 years on JET. By some miracle, there was a Doctor in Takamatsu (where I lived) who had done some work on two girls (twins) who were half german and half japanese. I think he was the only one in Japan to actually have cf experience. HUGE coincidence. He just moved to Okinawa and is a professor at the large Med school down there. Dr. Jiro Fujita is his name. I can give you his email if you are interested. He might actually jump at the chance to further his cf research. He's also a really nice guy and his English is top notch.

Hhmm...about me. yeah my Japanese is ma-ma. I passed san-kyu on the proficiency test and failed ni-kyu. Maybe I could pass now, or maybe not. Kanji is a killer.

Great to hear you have a supportive wife. What part of Osaka did you live in? I lived right on the border of Kyoto and Osaka when I studied at kansai gaidai. My stop was Kuzuha on the Keihan line. I hung out in Kyobashi and Yodoyobashi a lot. natsukashii!!

Oh yeah, I'm currently trying to get meds--not that I know what any of them do or are, but there is this pharmacy in Orlando that ships world-wide. www.cfpharmacy.com possibility??
 
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65rosessamurai

Guest
closetcf,
I'm STILL in Japan!
I used to live in Kyobashi, but now I try to avoid it (The EX still lives there!!) I've heard of Kuzuha, and probably been there at least once.
I now live in the southern part of Osaka. Fujiidera is the name of the city, and its a little further south of Tennoji.
I bought a car recently, so am a RARE gaijin-san driving on the roads....I get a few stares!

I took the 3rd kyu in 97, and the 2nd in 2001, but also failed 2nd, got about half of it all right...my problem was the reading and comprehension. I have yet to get the motivation to try again...
I'll check out the pharmacy, but I think my major problem is having a prescription to be filled..I would also have to deal with insurance, and I don't think Japan's Insurance would cover the meds, so I'd have to do it all on my own.
 
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closetcf

Guest
yeah the writing of prescriptions is a pain in the @%$ Hmm, maybe that one doctor that heard of cf? The insurance will be the tricky part, but doctors will admit that they know nothing about cf and probably eventually conceed to writing a prescription.

Oh! and I know you are still in Japan, did I write something that sounded otherwise--oops. I don't know about Fijidera so much, but I have been to Tennoji a few times. wow--talking to you I really want to be back there except that it is cold. At least at the end of this month a little piece of Japan will be coming here--my fiance! yea!

Have a good one!

oh, ps, what is your job? Just curious
 
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65rosessamurai

Guest
What area is your fiance from? How's his English?
You're past/present pronoun asking "Where did you live in Osaka" gave me the indication I wasn't understood as still being in Japan.

Anyway, It's almost as if I cannot escape Japanese, now. Even if I use romaji on this message, you can understand it, right? Nihongo wa Wakarimasu, ne.
Oosaka-ben mo wakarimasuka?

I currently work as an "Electronics Engineer", but with corporate restructuring two years ago, I'm more like an "O.L.", so I'm looking for a new gig.

The weather has cooled down since the end of September--It finally went below 28 Celcius then! It hasn't gotten cold yet, and you know, it NEVER snows in Osaka. I was dissapointed after hearing that, I'm originally from Snow (and Slush) country--Detroit!

Where are you living now in the U.S.?
 

anonymous

New member
Interesting stuff, Samurai and Closet. I'm curious about the kya -- language certification, I assume? What does it consist of, and what is its significance?

Q
 
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65rosessamurai

Guest
Excuse me, Q,

Let me answer a question with a few questions.

What does your inquiry have to do with CF, and what is IT'S significance? and do YOU have CF, too?

Currently, your comment is not atrociously offensive in my opinion, however, I've noticed most of your input has been more "mischivious" than productive.
If, the answer to my question regarding CF is that you do have it, why don't you log on as a member? If so, I'll consider answering your question.
 

anonymous

New member
I'm not sure what my having CF (or not, if that were the case) has to do with it. Nor was I aware that every post here must be exclusively <i>about</i> CF.

I'm idly (or maybe "productively") interested in languages and second-language acquisition, and your discussion about Japanese piqued my curiosity. I thought you might explain a bit about the kya to an outsider. But no need to trouble yourself.

Q
 
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closetcf

Guest
whoh-- I dont check in for a few days and there is all this stuff going on. uhm, first to samurai: My fiance is from Kagawa-ken (where I also lived) Just in case and because no one in Japan knows about Kagawa-it is the smallest prefecture and right across Osaka on Shikoku. Because of its relative closeness Kansai-ben is spoken to some degree and integrated into Sanuki-ben which is the Kagawa dialect. But for the most part, I know Kansai-ben. Yeah, go ahead and type in romaji, daijoubu. Fiance's engrish is pretty ok, well.... he is working on it. He actually has his interview at the US consulate right now! wow, so soon he will be over here! Detroit, eh? I'm originally from PA, but I found Kansai way too cold (lack of central heat) and am currently loving life in Florida. O.L. lol good luck in the job world. You don't have to make the ocha do you?

Q: Hmm, I dont know you or your motives or what kya is--is that some sort of Karate slur? Anyway, if you are interested in learning languages, the cf forum probably isn't the place. There are colleges and libraries... I don't really know how I can help you in the format of this site on your language queries.
 
I

IG

Guest
Between the two of you I think you have me covered. I currently live in Pennsylvania, grew up around Detroit [around = Flint, which I suppose is close enough], and was born in Florida. Although I have yet to reach Japan but who knows, I plan on making it across seas one day.

Closet, glad to see you're on here, hope you're enjoying it and getting a bit of information off of it, feel free to ask questions and we'll do our best to answer them.
 

Purplelungz

New member
YAY closet you made it. Wish I would have check here sooner and I would have known. I was hoping you would come here, even if it was just to talk to 65samurai. he is a nice guy.

I am interested in learning Japanese, at least some other language. But for me ill have to find someone in my area to help. After you tried to teach me a few words, which was awesome. I figured I probably need to hear how words are pronounced, thats why i never asked again if you wondered. I loved learning spanish my first year and did great, but the next year had a bad teacher and not only did i not learn anything i forgot what i was taught the year before except a few words. Yeah she was seriously a bad teacher, i wasnt the only one with that problem, the straight "a" students struggled in her class. Needless to say she was only there for two years.

ok off the language thing.

I hope you dont mind 65samurai I told closet about you. I thought it would be neat for you to connect like this. I mean small world huh. I should have asked frist i know.

Amanda
 
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65rosessamurai

Guest
Purplelungz!  I wondered who told her!!!  Not to worry about not asking first, I was actually moved..didn't think I'd become famous before becoming "infamous".I told my wife, "Hey, I'm getting to be famous here, too!"  Maybe I shoud be a movie star! (chuckle)I'd seen a few of your posts, before you were gone so long...welcome back!I was Juuust replying to closetcf, when I hit the wrong button!! (the reverse one!) and all the info I typed went "POOF!"Hi ImmortalGoddezz! You're welcome to come to Japan, but I wouldn't suggest staying to long (at least til your meds run out). (Yea, Flint is close enough)Seriously, I'm not sure what kind of CF involvement you have, but if it's not too serious, you won't have too bad of trouble..most foods here are low fat and high salt, anyway.closetcf,I've heard of Kagawa, but would get it mixed up with Kanagawa.  12 years here, and I still haven't memorized the prefecture names and places.  Kinda like the test of the U.S. states and their capitals in grade school!Working for the Consulate sounds like a good job.  If I got one for the one in Osaka, It'd be a cushy job...Japanese AND U.S. holidays, plus no zangyo! Tell me if you understand this phrase:watashi no kacho ha baka desu!
 
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closetcf

Guest
Thanks ImmortalGoddez!

Samuria: yeah, my Kacho can be pretty baka too! ha ha. Well at least the grad student coordinator, I dont know if that makes him a Kacho or a Bucho or what, but anyway BAKA. Wow, working at the consulate would be sweet, especially with two sets of holidays. hhmmmm..... [gears turning] but actually the interview he is doing is for his US visa. a little bit stressful, but I'm sure it'll be fine.

Purplelungz: yeah, thanks again for the info on this site. Its great. I just got back from my glucose tolerance test. Apparently I am a rare case--one for the medical journals my doctor says. hhmmm
 
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