# Rheumatoid Arthritis/Autoimmune Diseases



## VinnieBob (Mar 24, 2014)

bethdeth said:


> My allergy levels have dropped vastly since no Mirena and it was natural food chemical that set me off mostly but since lentils was one of the things I could have I tried incorporating them into the BORING diet and they had a nasty lava flow repercussion which left me wanting a wire brush. TMI? It was pretty much anything that would set it off in weird and wonderful ways and I even became reactive to wheat based things before eventually recovering. Some things gave me a blistering mind fucking headache, some gave me asthma, some eczema some attacked old injuries and I felt like I'd been in a car accident some things just burnt the hell out of my mouth from smelling them. Crazy making.
> 
> The diet I was on was low in salicylate, amine and glutamate. I had the mind fog and heart palpitating anxious feelings before going on the diet too but they were set off by the weirdest things. Oranges, tomatoes any kind of processed meat (and probably a heap of other stuff). Now there aren't really isn't much I'm allergic to (maybe intolerant).


the meat was to high in fat
i react badly to anything under 90% fat free
it's odd how fiber and high fat can treat us so badly


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## beth x (Mar 4, 2010)

Vinniebob said:


> the meat was to high in fat
> i react badly to anything under 90% fat free
> it's odd how fiber and high fat can treat us so badly


I never had an issue with fat causing anything. When I had the bad allergies I was far too thin and tried to eat fatty things (creamy stuff) to try and gain weight (since I was 170 cms and 40-45 around kilos). It was the level of glutamates and amines in processed meat. I'd have to buy the freshest looking steak I could find, wash it then barely cook it to avoid those natural chemicals that stirred me up. I thought the doc was joking about all of these kooky things for diet I had to follow at first. The only fruit I could have was peeled pear. The only vegies I could have were peeled potatoes, brussel sprouts and green beans. The only flavouring I could have was salt, chives and sugar (white). I wasn't allergic to dairy so that was a plus. I could have milk, cream, butter, but only cheese that wasn't aged. I'm cringing just thinking about the whole diet thing. It was BORING, but it made me look at food in an entirely different way.


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## VinnieBob (Mar 24, 2014)

bethdeth said:


> I never had an issue with fat causing anything. When I had the bad allergies I was far too thin and tried to eat fatty things (creamy stuff) to try and gain weight (since I was 170 cms and 40-45 around kilos). It was the level of glutamates and amines in processed meat. I'd have to buy the freshest looking steak I could find, wash it then barely cook it to avoid those natural chemicals that stirred me up. I thought the doc was joking about all of these kooky things for diet I had to follow at first. The only fruit I could have was peeled pear. The only vegies I could have were peeled potatoes, brussel sprouts and green beans. The only flavouring I could have was salt, chives and sugar (white). I wasn't allergic to dairy so that was a plus. I could have milk, cream, butter, but only cheese that wasn't aged. I'm cringing just thinking about the whole diet thing. It was BORING, but it made me look at food in an entirely different way.


me too
my diet only consists of 95% fat free hamburger, baked potato 2x a week coffee and water
my body violently rejects every thing else
no vitamins, seasonings, anything
i listed every substance i don't reject 
i can relate


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## yet another intj (Feb 10, 2013)

Red Panda said:


> I got Hashimoto's, are you interested?


I'm sorry but I have to...


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## Ode to Trees (Aug 25, 2011)

While some research that fibromyalgia runs in families, auto-immunological aspect of fibro is not clear yet. Some consider it as a immunological disease. Most researchers are not going down that path. Most of the research shows neurological origins (substance P, neurotransmitters, neuroregulators, other neuropeptides, decreased amount of endomorphine receptors [endogenous opiates] and noniceptors dysfunction). I have had it since 1994 with remission from 1997 till 2006. I had been an active member of a fibromyalgia forum for a couple of years and many members had concurrent auto-immune diseases such as IRB ((especially IRB), lupus, and RA). I also have developed a strong chemical sensitivity to various chemicals which stopped me to get my chemistry degree (most of scented candles, scented plug ins, cleaning chemicals, most of perfumes, VOC paints, smoke including nicotine one). Many complain of that one too as well as of a chronic bladder pain (interstitial cystitis - it might be allergic and auto-immune origin). I developed an incredible sense of smell, I feel like a member of canine species. I am sensitive to most make-up and facial creams. What I found intriguing is that more people with fibro and RA complained about pain due to fibro but not so much due to RA which to me was strange since these diseases destroy joints (maybe due to medication that was helpful for those). In a rheumy office, I have seen patients of various races receiving biologicals to treat RA. A lot of African-Americans as well. 
Gender: Female
Eye Color: dark brown
Hair Color: light ash brown
Descent/Ethnicity: Croatian-Serbian


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## Red Panda (Aug 18, 2010)

yet another intj said:


> I'm sorry but I have to...


LOL xD


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## Metalize (Dec 18, 2014)

Snowy Leopard said:


> I'm not going to answer as I don't really think you are going to see a meaningful trend on this forum.
> 
> The primary driver of most autoimmune diseases and particularly RA are stochastic factors - chance mutation of the B-cell receptor in a particular B-cell linage. Basic info see: https://en.wikipedia.org/wiki/V(D)J_recombination
> 
> ...



Thanks for the links and information, but I'll have to respectfully disagree with what appears to be your prejudged conclusion. 

First, there are very often correlations between medical conditions and other factors that may not be readily apparent, because our current body of knowledge would not explain _why_ there should be a correlation, but it does not halt the fact that it exists even if we don't know how to interpret it. You can see that the posters answering are predominantly female, for instance, which would have been one example of a measured correlation even if we didn't know this already. 

An accessible example is coming to mind -- endometriosis, a serious gynecological condition in which the uterine lining grows outside of it on other organs, is considered to be caused by estrogen. (The deeper cause remains unknown, but estrogen blocking drugs are used to control the disease). So it is a "hormonal" issue. Yet, women with this condition are more likely to have rheumatoid arthritis as well. Endometriosis Linked to Other Diseases Why would that be the case though? RA is an autoimmune reaction that could be triggered by bacterial/environmental pathogens -- what would that have to do with a hormonal condition that can start very early in life? We don't know, and I can bet you most "specialists" in either of those fields aren't aware of the correlation either, but I'm thankful someone researched this and made this information available for our perusal, so that some become aware of what they may be at risk for. 

That's really all this was about. We don't need to isolate it to the gene, cytokine, atom, to be aware of certain links -- but those would assist researchers in exploring those potential associations in the future. As for me, I'm not a researcher, but as I have RA and likely endo as well at a young age, I do like knowing in advance what else to look out for.


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## s2theizay (Nov 12, 2014)

Osteoarthritis, acute asthma, ever-growing list of food allergies, my brother has Marfan syndrome
Female
Eyes - brown
Hair - dark brown
black (American, although I do have some Irishness up in there as well as some native american relatives)


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## VinnieBob (Mar 24, 2014)

s2theizay said:


> Osteoarthritis, acute asthma, ever-growing list of food allergies, my brother has Marfan syndrome
> Female
> Eyes - brown
> Hair - dark brown
> black (American, although I do have some Irishness up in there as well as some native american relatives)


what food allergies?
read my previous posts on here
i might be able to offer advice


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## s2theizay (Nov 12, 2014)

Vinniebob said:


> what food allergies?
> read my previous posts on here
> i might be able to offer advice


shellfish, nuts, nutmeg, star fruit (yes, _star fruit_), sesame seeds, processed apple juice, and I'm becoming more sensitive to oranges as well. The odd thing is, I was never allergic to any of these things when I was younger. In my preteens, I began getting sick from the shellfish. That was my only allergy until a few years ago, then I started having reactions to the things I listed.


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## Kaisikudo (Mar 26, 2011)

*Condition: *Primary Sclerosing Cholangitis.

*Gender: *Male.

*Eye Colour:* Blue.

*Hair Colour:* Light brown/Dark blonde.

*Ethnic background:* Scottish/German.

No history of auto-immune disorders in my family. Grandmother died of bowel cancer, so I'll probably die of it too.


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## VinnieBob (Mar 24, 2014)

s2theizay said:


> shellfish, nuts, nutmeg, star fruit (yes, _star fruit_), sesame seeds, processed apple juice, and I'm becoming more sensitive to oranges as well. The odd thing is, I was never allergic to any of these things when I was younger. In my preteens, I began getting sick from the shellfish. That was my only allergy until a few years ago, then I started having reactions to the things I listed.


10 years ago i suddenly developed celiacs, I.B.S. lactose/casein, egg, soy, all fish
the only foods my body does not react violently to is 95% fat free hamburgers water, coffee and baked potato twice a week
if i didn't name it i can't eat it


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## s2theizay (Nov 12, 2014)

Vinniebob said:


> 10 years ago i suddenly developed celiacs, I.B.S. lactose/casein, egg, soy, all fish
> the only foods my body does not react violently to is 95% fat free hamburgers water, coffee and baked potato twice a week
> if i didn't name it i can't eat it


Ugh. That is absolutely horrible. I really can't imagine going through that. I hope you can at least find some solace in your coffee.


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## VinnieBob (Mar 24, 2014)

your'e the 1st person i met that has major food issues
i was beginning to feel like a side show attraction
i have been to many m.d.'s who are baffled 
they offer no help what so ever


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## VinnieBob (Mar 24, 2014)

s2theizay said:


> Ugh. That is absolutely horrible. I really can't imagine going through that. I hope you can at least find some solace in your coffee.



don't even think of talking to me till i've had my 2 cups:laughing:


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## Metalize (Dec 18, 2014)

I wouldn't say they're quite as major since I _can_ eat anything, but I technically am allergic to dairy, pork, citrus, some other fruits and vegetables, animal dander, various kinds of pollen, and _dust_. I remember the doctor being surprised at how many things I was allergic to when I was tested in 6th grade. I still break out in odd hives every now and then, though I ignore it because I just eat whatever I want (took my shots, avoided everything like the plague back when I was still trying to treat it -- forget it, nothing helped so I just said fuck it). I was diagnosed with GERD at the age of six, always had IBS stomach issues and still do, though to a lesser debilitating extent after using Betaine HCl and increasing overall food intake. But it's sort of flaring up again with the lack of appetite + bloating, so idk. I'm also very tyramine-sensitive -- started eating quality(!) Gouda cheese pieces out of a sealed bag today, got a raging migraine plus horrid drowsiness (good thing I don't drive; I shouldn't) that wouldn't go away until I took something for it. My allergies are more of the chronic sinus/slowly killing you variety than insta-anaphylactic shock. I noticed I have a lot of odd diabetes and hypothyroid-like symptoms despite the absence of either of them, particularly with regards to eating. I'm sure there's more to come, given I'm not even in late 20s yet.


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## s2theizay (Nov 12, 2014)

Metasentient said:


> I wouldn't say they're quite as major since I _can_ eat anything, but I technically am allergic to dairy, pork, citrus, some other fruits and vegetables, animal dander, various kinds of pollen, and _dust_. I remember the doctor being surprised at how many things I was allergic to when I was tested in 6th grade. I still break out in odd hives every now and then, though I ignore it because I just eat whatever I want (took my shots, avoided everything like the plague back when I was still trying to treat it -- forget it, nothing helped so I just said fuck it). I was diagnosed with GERD at the age of six, always had IBS stomach issues and still do, though to a lesser debilitating extent after using Betaine HCl and increasing overall food intake. But it's sort of flaring up again with the lack of appetite + bloating, so idk. I'm also very tyramine-sensitive -- started eating quality(!) Gouda cheese pieces out of a sealed bag today, got a raging migraine plus horrid drowsiness (good thing I don't drive; I shouldn't) that wouldn't go away until I took something for it. My allergies are more of the chronic sinus/slowly killing you variety than insta-anaphylactic shock. I noticed I have a lot of odd diabetes and hypothyroid-like symptoms despite the absence of either of them, particularly with regards to eating. I'm sure there's more to come, given I'm not even in late 20s yet.


Funny you should mention those allergies. I actually thought those were normal and I never remember to include them when I'm asked what I'm allergic to. When I get tested for allergies, I react to everything every time. My doctor mentioned that I have IBS and another one mentioned the likelihood of RA, but since neither of these are officially listed in any medical chart of mine that I'm aware of, I don't consider them to be actual diagnoses.


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## Metalize (Dec 18, 2014)

s2theizay said:


> Funny you should mention those allergies. I actually thought those were normal and I never remember to include them when I'm asked what I'm allergic to. When I get tested for allergies, I react to everything every time. My doctor mentioned that I have IBS and another one mentioned the likelihood of RA, but since neither of these are officially listed in any medical chart of mine that I'm aware of, I don't consider them to be actual diagnoses.


I don't include them either because as far as I'm aware, the allergies they "really" mean are those that are acutely dangerous. I do have allergies though, since my stomach is messed up (comorbid) and I have continuous sinus difficulties (trouble breathing without mouth, post nasal drip, hoarse voice at times from that, etc.). Me constantly blowing my nose at night and not being able to sleep was the reason I got tested in the first place. They are certainly common. But after seeing how ineffectual (and still so restrictive!) the treatment was, which I don't think actually works for anyone, I just went ahead and kept my chocolate and cat.  Gotta live life too. I wasn't 'actually' diagnosed with IBS, but I definitely have it. GERD was my diagnosis.


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## Blindspots (Jan 27, 2014)

For now I'm diagnosed with Undifferentiated Connective Tissue Disease, just a few months ago.
Gender: Female
Eye Color: Dark Brown
Hair Color: Dark Brown
Descent/Ethnicity: Filipino

An older cousin was diagnosed with SLE in her mid 30's.
Gender: Female
Eye Color: Dark Brown
Hair Color: Dark Brown
Descent/Ethnicity: Filipino/Chinese


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## Stelmaria (Sep 30, 2011)

Metasentient said:


> Thanks for the links and information, but I'll have to respectfully disagree with what appears to be your prejudged conclusion.
> 
> First, there are very often correlations between medical conditions and other factors that may not be readily apparent, because our current body of knowledge would not explain _why_ there should be a correlation, but it does not halt the fact that it exists even if we don't know how to interpret it. You can see that the posters answering are predominantly female, for instance, which would have been one example of a measured correlation even if we didn't know this already.


I take exception to the idea that ethnicity, eye and hair colour are worth associating with these diseases and that this information would be useful.

I also know that it is very difficulty to get useful information from forum users like this. The problem is that samples like these are (a) too small and (b) too biased, compared to a random sample of the general population.

Yes, autoimmune diseases are much more common in women, but this doesn't have to imply anything about the genetics - beyond the obvious link. 

I agree there are likely to be associations between illnesses that involve dysregulation of the endocrine or immune systems. But scientists currently don't understand the link. The key is that they aren't going to understand the link with studies merely based on questionnaires given to people who are members of patient organisations. Nor internet surveys. Nor case-controlled studies with small sample sizes. These types of studies are there simply to generate hypotheses. But if we are to do such studies, then they need to try and capture the most relevant and interesting details.
For example, it might be interesting (if sample sizes are high enough) on a site like Patientslikeme to see whether a treatment for one condition (eg an autoimmune condition) happens to reduce the symptoms of a different condition and vice versa (with treatments for 'unrelated' conditions used as controls). Unfortunately it won't be able to provide information like whether using particular treatments for endometriosis reduces the risk of developing RA (long-term), or vice versa. It won't necessarily inform medical practise either as patients should be properly treated for a debilitating primary condition, regardless of additional comorbid risks.

To that end, it is disappointing that over 12 years later, the study you mentioned (which was based on the aforementioned patient organisation questionnaires) has not been followed up by a high-quality population based study, to investigate the underlying associations. The lack of association between endometriosis and the aforementioned HLA genes does beg the question as to a reason for the association.

The best (and only decent study) I could find is this one (again a survey based study, but this was with a very large and uniquely selected group over 2 decades):
Endometriosis and the risks of systemic lupus erythematosus and rheumatoid arthritis in the Nurses Health Study II -- Harris et al. -- Annals of the Rheumatic Diseases

The study found that the association disappeared when adjusting for a particular variable. This is why detailed studies are needed, so those variables can be explored.



> We don't need to isolate it to the gene, cytokine, atom, to be aware of certain links -- but those would assist researchers in exploring those potential associations in the future. As for me, I'm not a researcher, but as I have RA and likely endo as well at a young age, I do like knowing in advance what else to look out for.


Unless we do the research to find precise factors which links one factor to another, it is hard to say why there is any association. Which means you won't gain much from this knowledge, since we won't know if there are any preventative options (or screening) worth trying.

Disclaimer: I will say that both endometriosis and autoimmune diseases are common in my family, along with recurrent pregnancy loss. As a result, I had previously read papers exploring the association between endometriosis and high NK cell activity, ANA, uterine artery notching, antiphospholipid syndrome etc. I would obviously like to see more high quality research done in this field.


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## FearAndTrembling (Jun 5, 2013)

I have asthma and allergies. I am curious about environment as well. I think the hygiene hypothesis may explain some things.

Some questions:

Was hygeine heavily stressed in the environment you grew up in? It was was in my house. 

Were you around cigarette smoke or other kinds of stuff? I was. lol.


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## Metalize (Dec 18, 2014)

FearAndTrembling said:


> I have asthma and allergies. I am curious about environment as well. I think the hygiene hypothesis may explain some things.
> 
> Some questions:
> 
> ...


Yes, certainly to both. My father smoked a ton in the house, and my mother was very fastidious about cleanliness. 

There are a ton of interesting explanations out there. Vaccines and other medications have been implicated, sometimes they appear following some other disease... I personally think it's less about being in a sterile environment than it is the result of the poor air quality of industrialized nations, since there's little someone can do to keep the air in their house clean. I know our city air quality keeps going down.


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## FearAndTrembling (Jun 5, 2013)

Metasentient said:


> Yes, certainly to both. My father smoked a ton in the house, and my mother was very fastidious about cleanliness.
> 
> There are a ton of interesting explanations out there. Vaccines and other medications have been implicated, sometimes they appear following some other disease... I personally think it's less about being in a sterile environment than it is the result of the poor air quality of industrialized nations, since there's little someone can do to keep the air in their house clean. I know our city air quality keeps going down.


One of the things I bitched my parents last time I was at their house was leaving the windows open. They say they like fresh air. I am like, "You think that air outside is fresh?" They act like it is the 1950s or something and they live in a desert/middle of nowhere. There is no such thing as "fresh air" anymore. Now I am the one telling them to straighten shit out. lol. 

I think home environment is significant. Perhaps just being around harsh cleansers all the time. It is also at school and other places. These synthetic cleansing products that rule our lives. lol. Men and cologne. Women and perfume. Some of them are so bad I can't be around them. I know people who get asthma attacks from them if it is strong enough. I don't. But it is so obnoxious and tacky.


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## Metalize (Dec 18, 2014)

FearAndTrembling said:


> One of the things I bitched my parents last time I was at their house was leaving the windows open. They say they like fresh air. I am like, "You think that air outside is fresh?" They act like it is the 1950s or something and they live in a desert/middle of nowhere. There is no such thing as "fresh air" anymore. Now I am the one telling them to straighten shit out. lol.


Lol, you would think that people who have grown up in clean-air environments would recognize that the traffic-scented air outside is notably worse, but nope. I do find I need open a window occasionally for some oxygen. Besides moving to a city/location with a good air quality index, which can be researched online, I think the best practical solution is to keep air cleaning devices, as many plants as they're able to take care of, and possibly look into things like this: Amazon.com - PollenTec¨ Clean Air Window Screen (21" x 10`) -.



> I think home environment is significant. Perhaps just being around harsh cleansers all the time. It is also at school and other places. These synthetic cleansing products that rule our lives. lol. Men and cologne. Women and perfume. Some of them are so bad I can't be around them. I know people who get asthma attacks from them if it is strong enough. I don't. But it is so obnoxious and tacky.


It's gross... I went most of my life not wearing any fragrances. It'd be nice if others didn't bathe in them as well. My mother always told me that if someone who isn't purposely sniffing you can smell it, it's too much. And yeah, I can't spend more than a few minutes in a place like Victoria's Secret or the perfume isle of a dept store without getting a headache or some weird brain fog/slowness from the fumes.

The laundry chemicals are a huge one. I've barely started implementing these tips myself, but there are many sites with fairly easy instructions on replacing everyday detergents/softeners with more natural ingredients. Most of it is just substitution and a little DIY mixing.

The only thing I'm hesitant to replace is antibacterial soap/wipes. This city's full of contaminants, so I don't trust that the normal soap, healthy as it may be, would effectively clean my hands when I come home. I think I can be permitted to keep this one little thing for myself...


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## FearAndTrembling (Jun 5, 2013)

Metasentient said:


> Lol, you would think that people who have grown up in clean-air environments would recognize that the traffic-scented air outside is notably worse, but nope. I do find I need open a window occasionally for some oxygen. Besides moving to a city/location with a good air quality index, which can be researched online, I think the best practical solution is to keep air cleaning devices, as many plants as they're able to take care of, and possibly look into things like this: Amazon.com - PollenTec¨ Clean Air Window Screen (21" x 10`) -.
> 
> 
> 
> ...


They don't understand basic science. I actually wonder how I would be different if I was raised by people who basically know what I know. lol. My parents are actually great. They were science oriented in that they believed in experts. I was at allergists and other things. 

Like when I go to my parents, I won't use their towels that are hanging by the sink. Or bathe in their tub. My mother uses so many fucking chemicals on her hair. lol. They are both obsessed with cleanliness. I try to buy products without bleach for example if it can be done. I want less harsh things. When I was a baby my parents started a small business. Auto parts. They rented a place that served as both our home and the store. They mixed paint there. Those fumes. I think my mother feels guilty about that still. Who knows if it had any effect.


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## Paulie (Jun 23, 2011)

Bugs said:


> I have ankylosing spondylitis. I'm male. Blue eyes, dark blonde hair, southeast European ( Croatia).


AS as well, and all of the above except my mom is French and my dad's from the US. Cheers!


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## VinnieBob (Mar 24, 2014)

It's gross... I went most of my life not wearing any fragrances. It'd be nice if others didn't bathe in them as well. My mother always told me that if someone who isn't purposely sniffing you can smell it, it's too much. And yeah, I can't spend more than a few minutes in a place like Victoria's Secret or the perfume isle of a dept store without getting a headache or some weird brain fog/slowness from the fumes.


i react badly to fragrances 
it sucks all the O2 outta my lungs
i do not suffer from asthma but if anyone near me is wearing perfume, cologne or body wash
i gasp for air, go into a immediate coughing spell and must run out side for fresh air


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