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Am I Just A Wuss? (Staying Home After Gluten/soy/whateverings)


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#31 Pegleg84

 
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Posted 06 March 2013 - 11:01 AM

(oh dear. What did I start!? Didn't mean for this to devolve into a yelling match...)

 

I think the take-home message here is:

1. everyone is different and deals with their condition in the ways they can.

2. Even with your best efforts people make mistakes (conscious or no), and they can take personal responsibility for the actions that lead to it (ie: whenever you eat out, you're taking a risk. Don't do it if you don't have to, but sometimes there's no choice).

3. Never make assumptions about anyone else's situation. That's why we always ask for details around here.

 

When I brought up this topic, it wasn't meant to be a pity party. I was curious what other people's experiences were, not whether our choices were smart or not, because as a Celiac, any time I eat anything that didn't come from my own kitchen, I know I'm taking a risk. I accept responsibility for the consequences, even if that means taking a day off to recover.

 

Thank you all for your stories and opinions,

Stay well!


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~ Be a light unto yourself. ~ - The Buddha

- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.


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#32 bartfull

 
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Posted 06 March 2013 - 11:54 AM

I wouldn't say that I am overly tough. The point I was trying to make, without being judgmental in any way, was if you are feeling that poorly so often, you may need to take a look at your habits and diet and tighten it up a bit. You may still be in the healing process so that might account for some of it. I have been gluten-free 8 years this April and have everything down so it's second nature. I have learned what I can do and what I cannot do, as far as food. I do not get sick that often at all and have healed to the point where I include some hard exercise. That made me feel even better. I was literally dying from malnutrition at diagnosis and weighed 94 pounds. If I can heal this well and live a normal life and show up for work everyday,
most people should be able to do so too. It took a long while for that to happen, over 3 years, but I am stubborn and don't give up easily. I also come from the generation where you go to work unless you are really sick. Not that this mind set is 100% correct but many times, even when I am not feeling my best, I go to work anyway and generally get better as the day goes on. I have a sedentary job so that makes it easier. You know, I am in my 50's and if you take too many days off from work, you can lose your job. I really want to retire someday and that won't be possible without going to work now. That alone is my big incentive.

Could everyone take a deep breath and read Gemini's response above again? Gemini said, ". If I can heal this well and live a normal life and show up for work everyday,
most people should be able to do so too. It took a long while for that to happen, over 3 years, but I am stubborn and don't give up easily"

 

That doesn't sound judgemental to me. It sounds hopeful and helpful. THREE YEARS. Gemini said it took THREE YEARS to reach the point she could heal and show up for work every day. Telling newbies that they could do it too certainly sounds supportive to me! She also mentioned that the OP might well be getting soyed which is a big thing to consider. How many of us have advised people, especially at first, NOT to eat out? When we are new to this we often react to LOTS of different foods. I remember when I first started I was reacting to pesticides and had to go totally organic. There was no WAY I would take a chance at a restaurant.

 

And as the world's worst cook, I don't buy it that some people can't cook every meal at home. I cook only one or two days a week, bag up my meals and freeze them. They microwave just fine. I would MUCH rather live on my own lousy cooking than take a chance of getting so sick that I couldn't work.

 

I read EVERY label, EVERY time I buy something, and I NEVER eat or DRINK anything I didn't prepare myself. Now I have had to ban outside food from my shop and my home. I do this not only so I can come to work every day, but because I don't want to face the long-term consequences of frequent glutenings. I don't want to get DH, RA, lupus, lymphoma, leukemia, nor any of the other nasties we risk if we continually get glutened.

 

Reminding folks, especially those who are new to this, that they have to be very careful, but that with TIME (three years) they WILL get to the point that they can pull it off successfully is not only supportive, but darned good advice, IMO.

 

Thanks for listening.


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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#33 notme!

 
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Posted 06 March 2013 - 12:22 PM

before i had any idea i had celiac, i:

 

worked full time as a freight broker/transportation agent while i also:

 

raised four kids to adulthood.  (but there were always at least 6 kids in the house at all times)

 

if i couldn't sleep, i went to the 24 hour store and did my grocery shopping for the week, because husband is an over-the-road trucker.  meaning we would see him (about) once every 2 weeks and he would be home for the weekend.  that's two (2) days.  otherwise, it was all me.  that whole time, going to dr after dr trying to figure out what was wrong with me - like you, gem, i was down to 97 lbs - so yeah, i take it all very seriously.  so does my family - they know i take care of them and they do whatever they can - sometimes too much, like a cupcake from a gluten-free bakery <bad idea...  so live and learn.

 

so, you see, now i have time to take care of me.  my (job i love, it's like an addiction for me to move freight!!  the company i worked for went out of business because of economy)  very, very stressful so i don't need that wrenching my guts. i WON'T get a grunt job/not in my field.   if it comes off as wimpy, whatevs.  i am provided for and thankful for it, maybe i did a little smart planning in the past.  lolz, and when i say i have no 'job' - i watch my grandkid and neice & nephew FOR FREE so their parents can work.  i pick them up at school(s) and cart them around where they need to go, take them to the park, swimming, etc so i guess i just have no 'pay' hahahaaa   :D

 

now.  everybody PLAY NICE

 

edited to say:  good point about the 3 year mark - coming up on it in july :)


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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

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#34 Gemini

 
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Posted 06 March 2013 - 12:53 PM

I think anger should be put back under control here. This is a support group. That means it's here for everyone who is hurting to get things off their chest especially to not burden friends & family. Not quite sure what po'd Gemini off so much here. It must be personal. Do some work with the shadow and forgive others who are learning or on their own path. They represent a part of you. No one has the same story and this isn't a place to compare how great you are to others who are suffering. When I feel good, I don't come here. When I don't, I do. It's a place of discovery or just a place to vent. All should feel welcome especially when they don't feel well. Especially then!

Please read my remarks about guilt and manipulation, Cali.  I am really not PO'd, just annoyed for all the reasons I stated that you are not listening to.  If anyone on this forum speaks truthfully and gives constructive criticism where needed, you people have a cow.  The OP asked a question about being a wuss when glutened and I answered her.  Not my problem if she didn't like the answer.  This forum is still a place for support...always has been.  Nothing was personal on my part......I'm not the one who got all defensive when I answered a question truthfully.  I don't think many of you are reading what I am saying here, which seems to be a real problem today.  I am in no way deeming myself great compared to those who are suffering so really.....lets stop that nonsense.  People just love to attack the messenger, don't they?  :rolleyes:


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#35 Gemini

 
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Posted 06 March 2013 - 01:02 PM

I completely agree that if you eat out, aren't extremely careful with what you eat, then that's a choice the person makes. And I know I try to read the latest research about celiac disease, but I also have a university degree and still consider myself smart (even if I can't always follow a movie plot) and know what to look for and can understand most of the papers I do read.

I find it hard to blame an individual when the norm, however, is to get a pamphlet from whatever celiac society and it says nothing about other food intolerances save for lactose (which isn't even dairy) and says you just need to be careful when you eat out. Besides which, the only people I've noticed on this site who make rookie mistakes are new.

 

What I didn't like is exactly as I put it. It isn't your lack of patience with individuals who continually do the same mistakes, but the view that if YOU can do, then that means MOST PEOPLE can do it. This isn't about celiac disease but about a point of view and a way of thinking that I believe is pertinent to what this discussion was supposed to be about. As a person with a mental illness I encounter day in day out this view and it drives me nuts. Depression takes away will and motivation and caring and that I have celiac disease is the ONLY possible explanation that exists for why I have it. I don't care who you are or what you've gone through, you have no right to judge someone else just because you've gone through shit and have come out of it strong while they're still struggling. ESPECIALLY when this frigging disease is a very reasonable cause for those mental issues. Your attitude is unbelievable. I've seen others on the site have it too, but that's the norm in society. If my depression were acting up and it put a big red halo around my body, you wouldn't have a problem believing me. If I threw up or got a rash, you wouldn't have problems believing me. But if I have a common disease that 1/10 of North Americans that is poorly understood, has no known etiology and has next to useless treatments that makes me have no desire, well then that's my fault and I'm just a lazy sod.

 

I don't know what I expect though. I go on depression forums and people there are even more deluded about treatment options and seem to think of it as a disease in and of itself and don't want to listen to the possibility that there might be something physically wrong. (As far as I'm concerned, I made a huge stride when I broke out of the useless diagnosis of mental illness and finally found something wrong with me. And I wasn't coddled then either...the medical system I'm familiar with is barely competent, not compassionate or coddling.) I come here and I have to deal with people indirectly telling me I'm weak and I just have to try harder, just change my mind and mentality, all because people feel that their own selves are the only things they consider when thinking about someone else.

 

I don't want your compassion. I just don't want you to judge me.

When you stop feeling sorry for yourself, maybe we can have a conversation.  You are attacking people for stating the obvious and making excuse after excuse for people here that make bad decision after bad decison and then want a pat on the back saying it's not their fault.  It's the sad state of society today.  I hope you can get past your issues and be healthy and happier than you appear now.  I know, what a jerk I am for accomplishing that on my own.  We are talking about making bad Celiac food decisions, not depression.

 

BTW...lactose is dairy so not sure what that statement is all about.


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#36 Gemini

 
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Posted 06 March 2013 - 01:10 PM

before i had any idea i had celiac, i:


 

worked full time as a freight broker/transportation agent while i also:

 

raised four kids to adulthood.  (but there were always at least 6 kids in the house at all times)

 

if i couldn't sleep, i went to the 24 hour store and did my grocery shopping for the week, because husband is an over-the-road trucker.  meaning we would see him (about) once every 2 weeks and he would be home for the weekend.  that's two (2) days.  otherwise, it was all me.  that whole time, going to dr after dr trying to figure out what was wrong with me - like you, gem, i was down to 97 lbs - so yeah, i take it all very seriously.  so does my family - they know i take care of them and they do whatever they can - sometimes too much, like a cupcake from a gluten-free bakery <bad idea...  so live and learn.

 

so, you see, now i have time to take care of me.  my (job i love, it's like an addiction for me to move freight!!  the company i worked for went out of business because of economy)  very, very stressful so i don't need that wrenching my guts. i WON'T get a grunt job/not in my field.   if it comes off as wimpy, whatevs.  i am provided for and thankful for it, maybe i did a little smart planning in the past.  lolz, and when i say i have no 'job' - i watch my grandkid and neice & nephew FOR FREE so their parents can work.  i pick them up at school(s) and cart them around where they need to go, take them to the park, swimming, etc so i guess i just have no 'pay' hahahaaa   :D

 

now.  everybody PLAY NICE

 

edited to say:  good point about the 3 year mark - coming up on it in july :)

You'll be fine...what a fighter!  You'll start to notice some real improvement after the 3 year mark. Enjoy your "easier" time  :blink:  of taking care of the kids. That is a harder job than a full time job with a boss!  ;)


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#37 JNBunnie1

 
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Posted 06 March 2013 - 01:14 PM

When you stop feeling sorry for yourself, maybe we can have a conversation.  You are attacking people for stating the obvious and making excuse after excuse for people here that make bad decision after bad decison and then want a pat on the back saying it's not their fault.  It's the sad state of society today.  I hope you can get past your issues and be healthy and happier than you appear now.  I know, what a jerk I am for accomplishing that on my own.  We are talking about making bad Celiac food decisions, not depression.

 

BTW...lactose is dairy so not sure what that statement is all about.

Gemini, you just responded to a post about depression with 'When you stop feeling sorry for yourself.'

 

It would be hard, in my opinion, to be more inappropriate.

 

It doesn't matter if she's on topic. Everyone who posts here has a moral responsibility not to abuse the

other members. I am not aware as to how the board rules are worded, as I can't find them right now,

but I'm pretty sure board rule #1 requires no abusive behavior. If I read this as abusive, how much more

caustic must it seem to the person it's directed at?


  • 1
If you're going through hell, keep going. ~Winston Churchill

#38 RyeSnake

 
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Posted 06 March 2013 - 03:44 PM

I agree that you are not a wuss in anyway.  When I would get an attack, I would have about 15 hour stomach cramps but then afterwards go along fine.  Been working fine for 10 years after getting it and haven't really missed anytime.  I share your misery though as know it sucks but you'll learn to live with it with one eye open on all foods ;>

 

When eatting out and someone says "I'm not really sure but I think its wheat free...." equals don't even try and come to think of it, I'll just have jello.

It is tough working fulltime and getting bit the night before. After the first two years though I found it easier getting around and even ate my most lunchs on the road everyday. Would not give those thinking your faking a second though as you you have enough on your plate..


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#39 cavernio

 
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Posted 06 March 2013 - 04:31 PM

I don't feel sorry for myself. I haven't felt sorry for myself much at all the past 9 years. I'm mad at people who compare themselves to others and think that if they can do what that person is doing, then that other person must too. And I brought up mental illness because such comparisons are most often done when there's nothing obviously wrong, so therefore the other person MUST be like you.

 

This forum is about celiac disease and coping with celiac disease, and mental health issues ARE a part of celiac disease. Not just a part of it like they are with any illness either, they're a symptom of it. I don't go around saying 'you just have to not throw up' because I don't throw up when I eat gluten. But yet you think nothing of telling me to 'stop feeling sorry for myself' because you can not feel sorry for yourself. My emotions aren't under my own control, and neither are yours. Motivation is an emotion. Satisfaction for accomplishing something is an emotion too, one I run low in. My motivations include sleeping, eating, going to the bathroom, thirst, and avoiding anything awkward or that requires a lot of work. How would you function if you didn't get satisfaction from doing things? And this isn't even going into the guilt. Guilt that, honestly, has nearly stopped existing once I became antisocial enough to ignore what others, people like you, think of people like me.

 

And as to people not knowing or understanding things, I'm surprised at you who claims to know the most recent celiac research, yet who has yet to come across studies implicating immune reactions in celiacs to casein. Go read the research forum, I posted articles last June, they're over a year old now. Besides which, the statement 'lactose is dairy' is horrendously misleading and downright wrong. Lactose is in dairy, but dairy is not purely made from lactose. And because of ignorant people like you, I go to the celiac friendly restaurant and get goat cheese on my food and then have the waitress tell me 'there's no lactose, it's goat' (which itself is also wrong) despite many times saying I could have no dairy, not lactose, dairy. I don't go there anymore, or anywhere else to eat out either, because people are ignorant.

How many of us have advised people to try avoiding dairy not just lactose? You make it out like getting all the info about celiac disease and what food is safe is easy, when you don't even know it all.

 

You aren't a jerk for accomplishing anything. You're a jerk for implying that if someone else doesn't also accomplish it, if they're not stubborn enough, they're mentally weak and it's their own fault. I am mentally weak and it's not my fault. When I did think it was my fault is when I was at my worst, constantly trying and constantly failing, a never-ending spiral of guilt and failure and it led to suicide attempts. I accept that I can't work right now, and me and my husband are both happier for it.

 

I'm not attacking you for stating anything obvious. You're attacking me for stating the obvious, that not everyone's the same.

 

I guess I just don't find people telling me 'if I can do it, you can do it too', inspirational. At the best it's vapid, at the worst it's insulting. And that she's patting people on the back and congratulating them for being 'such a fighter' is the most passive aggressive bitchiness I've ever heard.

 

I wouldn't call eating at a restaurant that has in the past been nothing but safe, making a bad choice.


  • 0
diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#40 TracyFL

 
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Posted 07 March 2013 - 05:54 AM

Honestly, I would not be able to work after eating gluten or whatever.  Even if I could physically show up, mentally I'd be useless.  You are not a wuss!


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#41 kittty

 
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Posted 07 March 2013 - 07:24 AM

Bartful - I'm sure there is some good advice in Gemini's posts, but I'm having a hard time seeing beyond the "suck it up" and "stop whining" comments. Comments like that are not necessary - ever - and they set the stage for everything else she says. In an in-person celiac support group she probably would have been asked to leave after saying those unkind things.

 

From Gemini's posts it seems that every celiac who eats out is making a bad decision, unless they go to trusted restaurants. But when you get glutened at a trusted restaurant, was that really a bad decision? No one chooses to be glutened, and sometimes we have no control over it at all. Just yesterday my husband dipped some pita bread into a jar of hummus we were sharing instead of putting some on his plate first. Luckily I caught it and stopped eating the hummus, but it didn't register for him until after I said something. We can't control what the people around us do, and that isn't our bad decision making. It's just life.


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#42 CaliSparrow

 
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Posted 07 March 2013 - 09:38 AM

If several people had similar complaints about me, I would listen. It might hurt but if you're really into taking personal responsibility & ownership, Gemini, that would be the way to go. It is the tougher road to take but more mature & it would certainly be in line with your mantra. Good luck.
  • 0
Last glutening: 12/28/13 (long time FOR ME!)
April 2014: no more reintroducing foods, not rocking the boat, no studying (except during insomnia)
March 2014: Reintroducing intolerant foods. Yolks & banana are a "no". Dairy NO
Year 2: Mental clarity improving. Hello to normalcy.
October 2013: Functional Medicine doc ref to cardiologist for possible sick sinus syndrome (deadline May)
September 2013: 55+ food intolerances, mercury poisoning, sIgA 50, leaky gut, adrenal fatigue, hormone disruption, ferritin 7, low Vit D, low Vit B6
January2013: Dairy-Free, Soy-free
November 2012: Gluten-Free
Year 1: Migraines resolved, OCD diminished, Change in skin texture, EyeBrows lifting & eyes bigger, Better memory, Better cognitive function, Better problem-solving capabilities, Lower anxiety level, Better outlook, Arrhythmia reduced, hope

#43 Pegleg84

 
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Posted 07 March 2013 - 10:48 AM

In addition to wussiness, I also don't like heated arguments, but as the "OP" I feel slightly responsible for this, so shouldn't go running off now.

 

Gemini, I know where you're coming from. You've changed your lifestyle and maintain a 100% gluten-free diet and feel great! That's wonderful and inspiring, to know that yes, the diet works and it can be done. I can imagine it's frustrating when you see others struggling, and think "I can do it, why can't they?" I know you're trying to be encouraging, and giving your experiences as an example, but it did come out as slightly hostile, or making judgements without all the information.

 

I was somewhat put-off by being told to "tighten up my diet" when you don't actually know what my diet is. Sure, I could eat 100% my own cooking, but I choose to take a break every couple weeks and have a nice (and most of the time entirely safe) meal cooked for me. If I get hit, then I accept the consequences, even if it means hiding in bed for a day. I'm still 80-90% better than I was before going gluten-free (then dairy and soy free, and who-knows-what-else free in the future). Feeling cruddy a couple days a month is not so bad compared to feeling like crap all the time. Maybe if I never at out ever I'd be 100%, but maybe not. That's the choice I am free to make. You can judge me for it if you want, but I'm not going to feel bad about it.

 

Also, if I was working at a less flexible job, or knew I had something really important to get done, I would indeed suck it up and get there and do my best.

 

I don't think I can add anything else, other than I'm looking forward to dinner out on saturday.


  • 0

~ Be a light unto yourself. ~ - The Buddha

- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.


#44 kareng

 
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Posted 07 March 2013 - 11:00 AM

At the risk of having you all say I'm an insensitive jerk -

 

My answer to the title questions would be "maybe"

 

If you are getting "glutened" or "soyed" at least once a month and it is effecting your job, you need to figure it out.  It really isn't normal or healthy to  have that happen.  I don't know how long you have been gluten-free.  If its just a few months, than its still a learning curve.  If it happens when you eat out, then maybe you should cut back on the eating out for now.  As Gemini said, trying to avoid soy is probably harder than just gluten. But if the soy makes you sick enough to interfer with your normal daily activities, you need to figure out how to avoid it. If that means never eating out or processed products, than that is what you must do. 

 

If someone got so drunk that they had to call into work once or twice a month for a hang-over, wouldn't you tell them to figure out how to stop that?  You wouldn't have any problem with a job firing someone for excessive absenses.

 

I have been able to figure this out. Unlike some on this thread, I think most of you are smart enough, strong enough and resourceful enough to do it, too.  Do I ever mess up?  Sure.  But not every week or even every month.  Have I had to suck it up and go on when I feel like crap, whether its from gluten or the left-over effects of a cold or a C-section? Sure.   Sometimes, that's what has to happen.  Kids need diapers changed, cats need litter boxes emptied, .... (there seems to be a recurring theme here :blink: ).  You get the point.

 

This may piss some of you off, but I have the right to answer this question, even if you don't like the answer. 

 

Edited to say that Peg and I were typing at the same time.  She has a job that is flexible enough that she can be sick once or twice a month.  Somehow, I got, maybe from someone else's posts, that the sick days were causing issues with her job.


Edited by kareng, 07 March 2013 - 11:05 AM.

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Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
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#45 kareng

 
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Posted 07 March 2013 - 11:17 AM

Also, if I was working at a less flexible job, or knew I had something really important to get done, I would indeed suck it up and get there and do my best.

 

I don't think I can add anything else, other than I'm looking forward to dinner out on saturday.

 

 

I guess it was a rhetorical question then? <_<


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Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
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