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


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94 replies to this topic

#16 CaliSparrow

 
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Posted 05 March 2013 - 09:00 AM

Thought I was a wimp & loser for years! My friendships really suffered because I would cancel or couldn't make plans. Sometimes a window of healthy days would appear and so no one ever really knew how sick I was. Started gluten-free in October HAVING NO IDEA that this was a real problem. I'm still recovering but whoa, feel like I'm experiencing things for the first time in my 40s!

Now one of my friends, who told me she thought my problems were emotional in nature, is sick and it looks like some sort of autoimmune disease. She keeps saying, "I know now what you feel like", "I understand". All I can do is support her.

It really does suck but don't let your mind wander into negative thoughts about yourself. Nurture and take care of yourself on your sick days and pat yourself on the back for having a job, doing the laundry or having the wisdom to stay in bed and heal.

Don't give a hoot about what others may think. If you call in sick regularly, it's obviously not nothing! Your boss understands and that's a blessing!

Take care,

Cali
  • 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

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#17 CaliSparrow

 
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Posted 05 March 2013 - 09:06 AM

p.s. haven't had a 9-5 in 10 years
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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

#18 kittty

 
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Posted 05 March 2013 - 09:07 AM

" 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."

 

You realize that you're making rather baseless presumptions that everyone's like you, right? Those same assumptions that make our friends, family, co-workers, etc, think we were/are just 'being lazy' when we're actually sick?

 

Completely agree. When I have bad brainfog I don't even feel safe driving. I can leave my turn signal on, briefly forget which pedal is brake and which is excelerate, and forget to look up at stop lights. It's way safer to stay home in bed on days like that.


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#19 Pegleg84

 
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Posted 05 March 2013 - 10:15 AM

(oh dear, this is getting heated...)

 

In my humble defense, 4 years in, I'm "tighter" with my diet now than I ever have been, 90% of meals I cook myself, and I'm very picky about the places I do eat out. In this particular incident, I covered all the bases and for all intents and purposes it should have been fine. Soy is a new thing and there's still a learning curve. Shit happens. I'm glad it wasn't worse.

 

I'm also extremely lucky that I am well enough to work and do the things I need to do. I'm also very lucky that my boss knows my situation and understands if I have an off-day. No point being at the office I'm I'm just going to stare at my computer like a zombie. On the other hand, I haven't had a real cold all winter, and haven't gotten the flu in... I can't remember, so that's a good thing.

 

What I'm not doing is "faking". None of us are! I think it can be hard for friends, family, and colleagues to really understand what's going on and that, whether it's bad brain fog or you're huddled over a toilet, it still sucks! Maybe we're wusses, but so be it.


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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.


#20 Gemini

 
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Posted 05 March 2013 - 12:01 PM

" 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."

 

You realize that you're making rather baseless presumptions that everyone's like you, right? Those same assumptions that make our friends, family, co-workers, etc, think we were/are just 'being lazy' when we're actually sick?

 

I am not like you. I would probably be living on the street or dead if someone weren't around to look after me. You don't have to 'get it' to accept it.

 

 

Celiac sufferers and pretty much everyone who isn't 'normal' are treated with suspicion because it's easier to think poorly of someone than to feel sorry for them.

I am not making baseless presumptions at all.  Let me tell you what I see and hear on this forum and if I never make another post again, so be it.  All these responses are getting old and this needs to be said.

 

I was as sick as it gets when diagnosed.  I went my entire life with symptoms and was not diagnosed until I was 46 years old.  That's a lot of damage. I was weak, dehydrated, 94 pounds and, as I was told, about a week away from a feeding tube.  Never want to go there again.  It was horrific.  However, I am a strong willed broad and never accept anything as final that is thrown at me.  I guess the only thing that will is death.  I decided that I WOULD get better, no matter what it took.  Maybe the fact that I stayed away from the Debbie Downers that make up the American medical system helped.  They will keep you dependent and sick, if you totally listen to them.

 

I went on an ultra strict gluten-free diet and made it my mission to become as savvy on this disease as Alessio Fasano, the leading Celiac doctor and researcher in this country.  I read legitimate medical literature and listened to Celiac's who had made good recoveries to see what they had done.  I already knew a lot about food because I love to cook so that part was easy for me.

I also developed an intolerance that showed up 2 years in to the diet to dairy but can tolerate small amounts of it now.  It took me 3 years to rid myself of ALL symptoms I had and there were too many to list here.  I presented with classic Celiac so suffered both gastric and neuro problems but I persevered and finally became totally symptom free after 3 years.  I do not go out to eat much at all and make and all my own food. 

 

What I see on this forum are some people who do not put as much effort into educating themselves on food and Celiac and how the disease works, which is very important to managing this disease well.  It's fine to ask questions but there are many who ask basic questions repeatedly so you know they are not educating themselves and reading up on it like they should.

Too many go out to eat too often and then can't understand why they need to take so much time off of work.  Really?  Every time you eat out it's a risk.  You have to accept responsibility for your actions and if you choose to eat out as much as the general population, you are going to be sick more often than you should be. I do eat out but it is not often at all and I tend to go to the same 2 places where they always get it right.  If I do sustain a hit, lesson learned and I pick up and move on......after I spend 2 days with my head in bowl, like the rest of you.

If you repeatedly take time off of work, then what do you expect your boss to say?  In today's world, you will lose your job and then complain about that.  I am never treated with suspicion because I rarely get sick anymore BECAUSE I have healed and take no unnecessary risks. I put major effort into this and I really think many more could be a lot better if they tightened up their diets, stopped eating out at risky places and stopped treating Celiac like it was a horrible disease with no hope of recovery.  It's not.  Like others have said, we have more power over our recovery than others with more horrible diseases.

 

FYI...I have 4 AI diseases so it's not just Celiac.  It has taken me 8 years to get where I am but I have done it. I go to work, live normally and go to the gym and don't think of myself as a victim.  There are many on this forum who have done the same thing...come back from being horrifically sick and are doing well.  It can be done, with the right mindset and some education. I realize there are those who have other health issues and working may not be feasible for them....I am in no way criticizing what they do.  But don't expect to hold down a job if you keep making mistakes with your diet and then blaming it all on being a Celiac.  And stop getting upset over what others say and do at work with regards to this. Who cares what they say?  Most people will never understand because they don't have Celiac and are clueless about food.  Better get used to that. 

 

Most people do well with this after awhile but there are too many whiners.  It could be a whole lot worse.  Yes, I said it, and it needed to be said.  If you are continually having bad days, time to reassess what you are doing and make improvements. Unless you are independently wealthy and don't need to work for a living, you might need to suck it up a bit and try harder.


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#21 kittty

 
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Posted 05 March 2013 - 12:22 PM

Gemini - I tried to write a long and detailed response to your post, but it's not worth it. I've come to the conclusion that you have zero compassion or common sense, and that probably won't change no matter what anyone says.


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#22 DerpTyler

 
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Posted 05 March 2013 - 10:58 PM

I am not making baseless presumptions at all.  Let me tell you what I see and hear on this forum and if I never make another post again, so be it.  All these responses are getting old and this needs to be said.

 

I was as sick as it gets when diagnosed.  I went my entire life with symptoms and was not diagnosed until I was 46 years old.  That's a lot of damage. I was weak, dehydrated, 94 pounds and, as I was told, about a week away from a feeding tube.  Never want to go there again.  It was horrific.  However, I am a strong willed broad and never accept anything as final that is thrown at me.  I guess the only thing that will is death.  I decided that I WOULD get better, no matter what it took.  Maybe the fact that I stayed away from the Debbie Downers that make up the American medical system helped.  They will keep you dependent and sick, if you totally listen to them.

 

I went on an ultra strict gluten-free diet and made it my mission to become as savvy on this disease as Alessio Fasano, the leading Celiac doctor and researcher in this country.  I read legitimate medical literature and listened to Celiac's who had made good recoveries to see what they had done.  I already knew a lot about food because I love to cook so that part was easy for me.

I also developed an intolerance that showed up 2 years in to the diet to dairy but can tolerate small amounts of it now.  It took me 3 years to rid myself of ALL symptoms I had and there were too many to list here.  I presented with classic Celiac so suffered both gastric and neuro problems but I persevered and finally became totally symptom free after 3 years.  I do not go out to eat much at all and make and all my own food. 

 

What I see on this forum are some people who do not put as much effort into educating themselves on food and Celiac and how the disease works, which is very important to managing this disease well.  It's fine to ask questions but there are many who ask basic questions repeatedly so you know they are not educating themselves and reading up on it like they should.

Too many go out to eat too often and then can't understand why they need to take so much time off of work.  Really?  Every time you eat out it's a risk.  You have to accept responsibility for your actions and if you choose to eat out as much as the general population, you are going to be sick more often than you should be. I do eat out but it is not often at all and I tend to go to the same 2 places where they always get it right.  If I do sustain a hit, lesson learned and I pick up and move on......after I spend 2 days with my head in bowl, like the rest of you.

If you repeatedly take time off of work, then what do you expect your boss to say?  In today's world, you will lose your job and then complain about that.  I am never treated with suspicion because I rarely get sick anymore BECAUSE I have healed and take no unnecessary risks. I put major effort into this and I really think many more could be a lot better if they tightened up their diets, stopped eating out at risky places and stopped treating Celiac like it was a horrible disease with no hope of recovery.  It's not.  Like others have said, we have more power over our recovery than others with more horrible diseases.

 

FYI...I have 4 AI diseases so it's not just Celiac.  It has taken me 8 years to get where I am but I have done it. I go to work, live normally and go to the gym and don't think of myself as a victim.  There are many on this forum who have done the same thing...come back from being horrifically sick and are doing well.  It can be done, with the right mindset and some education. I realize there are those who have other health issues and working may not be feasible for them....I am in no way criticizing what they do.  But don't expect to hold down a job if you keep making mistakes with your diet and then blaming it all on being a Celiac.  And stop getting upset over what others say and do at work with regards to this. Who cares what they say?  Most people will never understand because they don't have Celiac and are clueless about food.  Better get used to that. 

 

Most people do well with this after awhile but there are too many whiners.  It could be a whole lot worse.  Yes, I said it, and it needed to be said.  If you are continually having bad days, time to reassess what you are doing and make improvements. Unless you are independently wealthy and don't need to work for a living, you might need to suck it up a bit and try harder.

Despite what people say, you have a good attitude towards celiac and life in general. There are many things worse than ceilac, the fact that we can make ourselves healthy with only a diet change is a luxury most diseases dont have. Some people will always find a way to make excuses.


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#23 kittty

 
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Posted 06 March 2013 - 06:52 AM

Despite what people say, you have a good attitude towards celiac and life in general. There are many things worse than ceilac, the fact that we can make ourselves healthy with only a diet change is a luxury most diseases dont have. Some people will always find a way to make excuses.

 

It's not only a diet change, though. It's an entire lifestyle change, and that means practice, education, and making mistakes. Gemini is criticizing people for making mistakes, while admitting making them him(her?)self. It's hypocritical. Most of our doctors don't have a clue about celiac, and so people should not be slammed for asking basic questions. I always thought of this forum as a place of support and a place to share experiences - not a place where I'm told to suck it up and stop whining.

 

Honestly, if Gemini has this lifestyle down, and doesn't need any help or support, and has no compassion for fellow celiacs, why is he/she even here?


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#24 Gemini

 
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Posted 06 March 2013 - 07:29 AM

Gemini - I tried to write a long and detailed response to your post, but it's not worth it. I've come to the conclusion that you have zero compassion or common sense, and that probably won't change no matter what anyone says.

I have plenty of compassion, Kitty, for people who take responsibiltiy for their actions and don't continually make excuses for their behavior....and then get all defensive when I point out the obvious.  Zero common sense?  I'm the one who is doing well and going to work every day because I make big efforts to do things right.  What part of that don't YOU understand? How do YOU define common sense?  Eating out all the time and whining because you can't work and call in sick and wistfully thinking this defines Celiac Disease?  :rolleyes:


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#25 Gemini

 
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Posted 06 March 2013 - 07:46 AM

It's not only a diet change, though. It's an entire lifestyle change, and that means practice, education, and making mistakes. Gemini is criticizing people for making mistakes, while admitting making them him(her?)self. It's hypocritical. Most of our doctors don't have a clue about celiac, and so people should not be slammed for asking basic questions. I always thought of this forum as a place of support and a place to share experiences - not a place where I'm told to suck it up and stop whining.

 

Honestly, if Gemini has this lifestyle down, and doesn't need any help or support, and has no compassion for fellow celiacs, why is he/she even here?

You like to test people's patience, don't you Kitty?  I am here to help others and have done so because they listen to what I and all the other veterans say.  We help many more people with better attitudes than yours and they get better and show their appreciation.  That makes for a very good day when I can get new Celiacs to see what this really entails and they take the steps necessary to heal.  It sure as hell is hard work but is very do-able.  You re-adjust over time to this new way of life but it does not have to be any worse than the life you had.  In fact, it's way better because you get to be healthy again.

 

What mistakes are you referring to?  I rarely take a hit because I am so careful.  Maybe when you get older, you will realize that you can't take unneccessary risks with this diet when you get to be over 50.  Bad idea......

 

One more thing and then I will make no other comments on this.....you can stop the manipulation too.  Why is it that when someone is given constructive criticism, all of a sudden this forum is no longer a place of support?  You're guilting techniques are not going to work on me.  It's not for a lack of compassion, either. I have a sister who does that and I don't let her manipulate me either.  I'm old, I know all the tricks. This forum is supportive for those who want help and guidance, not for people who come on here and list all the food eaten out and then asking if they are a wuss for calling into work sick once a month. And, yes, we know doctors are clueless about Celiac, that's why you need to educate yourself on this well. You don't necessarily need an MD to recover well.


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#26 Gemini

 
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Posted 06 March 2013 - 07:47 AM

Despite what people say, you have a good attitude towards celiac and life in general. There are many things worse than ceilac, the fact that we can make ourselves healthy with only a diet change is a luxury most diseases dont have. Some people will always find a way to make excuses.

Thank you!  This is the attitude to have for healing and a happier life.  Works for me!  ;)


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#27 CaliSparrow

 
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Posted 06 March 2013 - 09:17 AM

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!
  • 1
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

#28 kittty

 
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Posted 06 March 2013 - 09:22 AM

Gemini, you make assumptions about other people, and then follow them up with rude comments. How is it compassionate to call people "whiners"? How is that constructive or helping people in any way?

 

For your information, the last two times I was glutened were at restaurants that advertise as being gluten-free and places where I had eaten safely many many times before. There is NO way to predict that this will happen. You apparently have a lifestyle that allows you to prepare food at home three meals a day every single day, but not all of us have that luxury. That's what I mean about lacking common sense - not everyone can live the same way. You CANNOT base every single person on this forum from your own perspective. People need help and guidance to adjust their life to this disease. The LAST thing anyone needs is to be shot down and called names when coming here for support.


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#29 cavernio

 
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Posted 06 March 2013 - 09:29 AM

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.


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

#30 CaliSparrow

 
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Posted 06 March 2013 - 09:56 AM

Cavernio - Well said! The many roads I went down to get here & find out it was physical... Even majored in psychology ha ha! What an eye opener, eh?!
  • 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




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