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09-24-2010, 10:26 AM   #1
MysteryLocket
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"You dont have crohn's"

gawd!!! so i was on here reading through the "You might have crohn's if you..." thread, and i was laughing horribly, so I posted some of it up on my face book, and on my status i had:
"ROTFL!! "You know you have crohn's When if you get asked how you are, the safest response ( and the only
one the enquirer really wants to hear) is a tight lipped "fine", rather
than a detailed recount of how you have been squirting through the eye
of a needle for two days and your ring piece is on fire....""

Then in response I got:
"Lol you are silly dearest" and i 'liked it'
"Please don't joke around about this horrible disease. It isn't funny."
(this was from a person who previously told me something that i went into a huge rant on, this post was AFTER the other one that i will copy and paste up below these because it's longer, and i want the longer one to be later. lol)

And I replied with:
"<_< ... that quote CAME FROM SOMEONE WHO HAS CROHNS! >_> but whatever.."

Kay so am I wrong for posting that up? am i wrong for finding this kind of thing so funny, cause it's so true? Am I wrong from actually FEELING this this quote "You know you have crohn's When if you get asked how you are, the safest response ( and the only
one the enquirer really wants to hear) is a tight lipped "fine", rather
than a detailed recount of how you have been squirting through the eye
of a needle for two days and your ring piece is on fire...."???
==================================
okay here's the extra long one that actually took place before the above.. I posted a 'note' saying: "Lol, so on another crohn's support forum, I came acrossed 10 pages worth of "You might have crohn's if.." and "You know you have crohn's when..."'s ..

Keep in mind, if you are either faint on the topic of poo, then to not read on.. Or if you are one of my younger friends, you may not find the language okay for you to read. SO it's best to just not read past this point, for you will probably not understand why it's funny anyways ;-)



Sooo.. here's me copying and pasting all the ones that made me crack up outloud laughing."
And I have about 30 quotes copied and pasted up there.

Then I have a reply from my aunt (the one who replied above about not joking around) :
"You don't have crohn's. Please be mindful of the people that really are living with this horrific disease. I believe you can make a difference in your life and in the lives around you. What are your dreams?"

I am constantly getting replies from her like "what have you done today" and "i've done this ___, what have you gave back to the world?" and "your cousin is only 11 and she's done all this _____ , what have you done?" and so on, she never acknowledges any of my replies of "i'm just trying to survive" or anything like that..

Here's my SUPER LONG reply... Please tell me what your thoughts are on it, and if you would of replyed diffrently, or what you would feel or think if you were I who did this... is it wrong that i did?????

"huh? what do you mean?? The G.I. doc did tests and said I do have it... And those above are so funny, because it's so true. I even added a few to the board where I got these from. *sighs* If i don't have crohn's then why the heck do i have ...to take pentasa and prednisone and all the other meds for crohn's that I must take? just to be able to get out of bed and away from the toliet for more than an hour?
I swear and promise i'm not faking anything. I don't fake things. I'm not my grandmother. and I'm not a hypokondriack. Tho i am hypokalemia but that is totally diffrent. lol. ... I have a high pain threshold, if you don't believe me, I can let you talk to someone who is a profession who was there when my tendon was busted, and my bone was broken all in the same area from the same hit, and i didn't even shed a tear over it. all i did was panic, and beg for a doctor. She knows how my behavoir is, and how i'm odd when i'm hurt or hurting. but i dont fake. - well.. when i was little kid i used to fake being sick to get out of school. loll. but that was diffrent..
And if i don't have crohn's why am i paying 245 out of pocket just to see my g.i. doc? why am i taking meds that cost over a thousand dollars? why am i on meds that make me sick? why am i taking so many meds? why can't i eat everything i want? why can't i go TWO HOURS without pooping out the runs that lands me back in the hospital with iv's pumping liquids in me, be it potassium, be it pints of blood, be it magnesium, be it sodium chloride (water)? why can't i drink caffiene? why can't i go about my life the way i want to!? WHY DOES EVERYONE THINK I JUST GO ABOUT MY LIFE MAKING THIS CRAP UP?!
;^; fine! I GUESS, THOSE WHO CAN'T EVER BELIEVE WHAT I SAY, OR TAKE WHAT I SAY SERIOUSLY, AREN'T REALLY MY FRIENDS OR FAMILY! I guess that's just how it is! Cause that causes stress on me, lots more than anything else in my life. cause i'm constantly trying to prove to people what they think is wrong. and it's stressful! And with crohn's i'm suposed to stay out of stress relationships, and stay away from stress in general. Because stress puts too much strain on your immune system. which is when the crohn's flares up most. is when stress is happening. - lately the stress can be mild and it still makes a flare jump up. Used to when i was a kid, it only flared up when my grandparents were fighting.(aka a severe stress).
....
.... I'm sorry, this is just how i feel. I love you, but i need to communicate, or if i keep keeping in what i wanna say, I will just keep getting more and more angered. I DOOOOO haave crohn's! If you wish proof, I can get my medical records of all the tests they did so you can see the proof too. I can get a statement from my Gi doc, primary doc, hospital, insurance, and nurse if you need that as well to believe me. (Tho, since i haven't actually SEEN my nurse yet... that would be a bit delayed, but once she starts actually coming in, then I'm sure she would talk to you too. Her name is Delores *doesn't remember her last name*). My insurance doesn't just pay things for the heck of it! they pay ONLY if they have to. And there has to be proof! and lots of it for them to pay! Being hospitalized for a total of 18 days in one month, they would not pay unless it was REAL! (Which all but the last hospitalization and the last ambulence ride they paid for- the registration people messed up and didn't send the medical records over to the insurance, so i had to appeal it and tell the hospital to send it over to them if they wanted to be paid.). What am i doing wrong? Why are my actions or words saying otherwise to you and a few others? why don't people believe me?! when did i EVER give them reason NOT to believe ME!? am i really that untrustworthy!?
my dreams? my dreams?!?! I WANT TO HAVE A LIFE!!! I WANT TO BE HAPPY!! I WANT TO FEEL OKAY!!! I WANT TO BE A NORMAL PERSON!!!
The business life isn't for me, but i'm more of an animal person, and more of a secretive person. I do things for people, but it comes naturally, I don't brag about it, or do it just to say "i did this...". And usually I forget that i even did it, or didn't even notice that I did. Or it's so small it wouldn't be viewed as the same.. or it wouldn't be seen as a big deal in others eyes as it does to me and the person who I was near. There's been a few times I've thought "I've flushed the toliet, and sprayed air freshener, and I turn on the fan, and closed the door, and warned my bff of it.. that she's very gratiful for, instead of letting it all seep into the living room on her" or "I tore up notebook paper and placed it by the toliet so we have something to wipe with and i didn't leave her paperless" things like this... but it's not quite "acceptable" to say these things, but i do do things. and I don't brag about it. cause when i do things it's not to get attention, it's just because it comes natural and it's me. I hate being the spot light anyways... I used to love it when i wanted to be an actress.
My dream... is to feel happy most of the time... have those around close that I love being around. Living somewhere I love. Having all the animals I want, and being able to take care of them. Start the shelter for animals that me and my bff/roomie want to do in the future. Live somewhere nice, but not richy stuck up like place. Have transportation to the things we need, when we need it. Have all the neccessities that one needs to live. And for abby to live forever as long as I do. (The last i'm sure is just merely a dream. but she is my life.. especially now that she's getting older and snuggles me more, and i can actually pick her up without her going "let me go. let me go!! *Squirms*..) ... *sighs* I'm sorry if this upsets you.... It needed to be said tho.. I try NOT to say anything that would make you hate me or never speak to me again. but I guess sometimes things need to be said..."

.... one of my facebook friends actually just 'liked' my reply lol... so i SORTA feel better about my post, but i wanna cry.. and i'm shakey cause i'm angry.. and then i'm scared I'm only veiwing this from my own point of view and being selfish and that my aunt might actually see something that I don't.. so i need to see this the same way... please tell me what you think.. I know this is long. and i'm so sorry for it being so long... v.v
09-24-2010, 10:51 AM   #2
Manzyb
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Oh my gosh!! I use humor all of the time as a way of coping with the disease. What's so wrong with that, lady? You have to laugh or you would cry all of the time about it. That's what my mom always taught me and that's how I've always tried to live. You do what you have to do to cope with what you are living with.

So, this lady is an aunt of yours and doesn't believe you that you have Crohn's?? That doesn't make sense. What kind of family member would do that? I'm sure they've heard about you being in the hospital a time or two. I don't get it.

I don't think that you overreacted. I don't understand why she thinks you don't have Crohn's?
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09-24-2010, 11:36 AM   #3
MysteryLocket
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Thanks
Yah, It feels better to laugh, than to cry. And these things made me laugh while reading them. So I shared them on my facebook of the ones that i could feel and laugh at, at the same time.
(I laughed at pretty much all of them, but the ones i copied and pasted was the kind that made me just burst out laughing, and holding my stomach going 'ouch lol ow LOL!! owww ROTFL!!" hehe.

Yeah.. shes my aunt. and yes I've been in the hosptial quite a lot this past month. And it was also my first time to ever be admited into the hosptial.. I didn't even know how it all worked and the er doc came in the first time to tell me i was being admited and i was puzzled and asked "So what happens now? what's up in the hospital? am i suposed to stay in bed the whole time? can i wonder around the hospital? will i have to wear a gown?" and all the newbie questions. lol..
she's my fathers sister, and my father is convinced i'm a hypocondract, because i had so many ear infections, BV infections and flu and colds all within a 4 month period. Which i dont think is very fair of him to think that of me, but I can't really change what he thinks of me.. and i can see how he could think that because the fact i was so sick.. but.. still. it's not true.. a hypocondract does things to make themselves sick.. I don't . I stay far away from being sick as posible i hate pain, i hate discomfort, i hate sinus issues, i hate it all. so why would i want that?
sadly my family is messed up.. I don't really have famly support. which makes me wanna cry everytime i read someone who talks about how their parents or mom or dad or someone near in their family encourages them, and helps them, and UNDERSTANDS them.. cause i've never had that, and always wanted that... so hard my heart aches... :-(
But i'm glad to know that you don't think i was over reacting. :-) That helps a lot! thanks!
09-24-2010, 05:41 PM   #4
seaofdreams
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Unfortunately you're going to come across people who just have no idea at all. There will be people who don't even bother trying to understand or sometimes it might be that they don't have the capacity to handle the idea of you being sick.
It's a hard lesson to learn but in saying that, the people who do support you and do the best they can to understand what you're going through are going to shine out from the rest like the stars they are.
Try to take it in stride and I agree with you, laughter really is the best way to get through tough times
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"Never feel guilty for being sick and try to stop comparing yourself and your life to others. You're doing the best you can under the circumstances you have and you're doing great."

Diagnosed with Crohn's in August 2009
Medication: 20mg Methotrexate injection weekly
Supplements: Folic Acid|Vitamin D|B12|Iron Complex|Magnesium Complex|Calcium|
09-25-2010, 03:55 PM   #5
MysteryLocket
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Unfortunately you're going to come across people who just have no idea at all. There will be people who don't even bother trying to understand or sometimes it might be that they don't have the capacity to handle the idea of you being sick.
It's a hard lesson to learn but in saying that, the people who do support you and do the best they can to understand what you're going through are going to shine out from the rest like the stars they are.
Try to take it in stride and I agree with you, laughter really is the best way to get through tough times
Thank you :-)
I will try to keep this is mind. And when I need to rehear it, I'll come back and re-read this. :-)
09-25-2010, 04:38 PM   #6
DustyKat
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My initial response was to say to tell her to f*** off but then I realised it was your Aunt so that's probably not appropriate!

You haven't over reacted and more power to you for such a direct and heart felt response. I am a nurse and let's face it we generally have a pretty warped sense of humour but I reckon if we didn't laugh at the stuff most find appalling we would spend our days crying. I don't think it's any different for you.

Dusty.
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09-25-2010, 09:15 PM   #7
Manzyb
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Did your aunt ever respond to you?? Just curious if she had anything to say about that.
09-26-2010, 07:18 PM   #8
MysteryLocket
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Haha, yeah quite a few of my fb friends said they so badly wanted to just post up a comment and tell her basically the same thing - 'f off' . But they didn't because they didn't want to start any thing between her and I.
Thanks :-) I find it hard to get my feelings out in an acceptible written form a lot. And I also, tend to get where I over take things that were said sometimes. And give them more meaning than they were given. (like things said affect me more sometimes). So sometimes I tend to overract in my actions and words afterwards. (that's where I usually take everything verbatim to outside people, and get their views on if I over racted or not.

And, she never responded to this one that was posted in 'notes'. But over on the status one, she replied... so did i.. *bites lower lip* ... Kay, I'll copy and paste. I don't think I was so ... calm about replying back this time. Because I felt like she was just ignoring me again, and talking to me like one would with a little kid who just lied and said "my imaginary friend wants a juice too" and the adult is like "okay sweetie.. *hands juice box, but not really believing just dismissing it so there isn't any more confrontation over it for the time being; and hopes it will pass*" that kind of thing.. But anyways.. heres the reply to the status message...

Her: "(((My name))), I hope you are able to move forward with having this disease or any other disease or sickness that you discover. Sometimes understanding who you are and how you can be a productive part of society can be an amazing journey."
Her: (((same minute as the last posted))) "I love you very much, but there is nothing else I can say to you. Just that I love you and hope you can find the help you need to heal."

And my loooooooooong reply. (which she prolly just ignored like my last long one, because it's been a few days and she hasn't replied to it- but she has been online so.. *Shrugs*)

Me: "This isn't something that is curable. It's barely treatable, and when people are just begining to get treatment for it, it's just a hit and miss thing until the right combination of meds and such works. ... It's something I will live with for the rest of my life.. It is something I suspect I have had since a very young age.. due to all of the unexplained bathroom issues I had, but they only came up in extreme stressful times. The reason why I have yeast and BV infections constantly is because of crohn's. the reason why my eyes are messed up and getting worse every few months is the crohn's. The reason why i throw things back up sometimes because food gets stuck in my throat and wont go back down is cause of the crohn's. The reason why i have three fistures in my colon is because of the crohn's (one i've had since 2007), the reason why i have hemmeroids is because of the crohn's. the reason why i was put on cardiac arrest alert watch in the hospital is because of the crohn's not grabbing enough potassium from my bowels before spitting it back out. The reason why i had to be on IV antibiotics and steriods is because my colon wasn't grabing the meds, before it passed them right through. The reason why I had to be on a magnessium pump is because my colon was grabbing too much potassium at one time. The reason why I'm so anemic, and have had to have iron supppliements since 12 is because of crohn's.. the reason why I have to frequent the er for sodium chloride fusions since the age of 9 (when the i passed out in walmart walking behind my gma right after i said "i... dont feel good") the doctor said i was severly dehydrated. Back then they didn't know why.. they thought i was just not drinking enough.. but it doesn't matter HOW MUCH I CONSUME OF ELECTROLIGHTS AND OTHER HYDRATING WATER SOURCES, my body passes it just as soon as it gets it. that's the crohn's! I get moody and cranky and fat from the steriods. I even am growing a stash on my lip here. what the hell! i mean really... this is only scratching the surface of this shit.. I'm not even gonna go into detail about how the tests were, and how gruesome they were, and how i had to put my pride away (which was super hard) when I hit my all time low in the hospital and they forced me to wear diapers, and i had to be showered by someone else, and be naked infront of some stranger who had to wash me, and I had to be examined in so many ways, there's not a hole on me that hasn't been poked, proded, or looked at, or touched. geeze! I don't ever speak of these things to anyone usually.. sometimes a lot of it slips out to those i'm close to, like C when/ and WHILE ITS HAPPENING. but other than that, i dont mention it usualy. because no one really wants to know. when they ask how are you, they really just want to hear "i'm great, how are you doing? *smiles big*"
And don't even get me started on the cuts on my bum from the toliet seat and having to sit there for so long, and how my legs grow cold and numb. You think i don't know crohn's is bad?! I KNOW!! I'M LIVIN IT!!! And knowing this all, you still only know the surface of all the stuff. theres so much inside the bowl that you only can see the surface. Do you think I want this? That I want to have crohn's? do you think i LIKE spending my time in the bathroom in aganising pain, or in the hospital being bored out of my mind, wishing I could be home in my own bed, or being poked with every needle, tube, or any other medical equipment, that I've never thought i would ever be near. I have a phobia now of when anyone comes into my hospital room, the first thing i do is jerk up, and eye them franticly making sure they aren't carrying a red box with them. (the box of horribleness). Do you actually believe that I like this stuff? and feeling pain!? not to mention what happens when your vein pops and you can't get a nurse in to fix it.
*sighs* or knowing that you are told you have to wear a mask at all times because while on the prednisone you are severly weak towards any infections or colds or flus or anything! WHO LIKES BEING STARED AT WHILE WALKING DOWN THE STREET WITH A MASK ON!? not me.. that's who...

so in the short form.. I can't move forward.. the only time i can move foward is when it goes into remission.. which right now isn't looking so bright and hopeful. and i dont' FEEL like i have anyone there supporting me. no one comes to visit me when i'm in the hospital. the only visitors i get are the nurses, and voluneteers in the hospital who notice I don't have anyone signing in or out to see me. The only ones who really came to visit me once was D and B. And they are pretty much the furthest ones away! (some people i don't blame for not coming, because they have their own issues, so if they are reading this, please know that i'm not ranting about you. because i know you also have a lot to go through- welp alrarm going off, time to take my meds again.)kay i'm back. and it really hits me hard when i'm not believed. or when i feel like someone is not UNDERSTANDING me."
10-22-2010, 08:55 PM   #9
MADiMarc
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I do not understand why someone that claims to care about you would believe that you are faking something that is soooo not fun. I actually loved your reply and you were nice about it. I would have just told them off using the words that the nuns would have whipped us for!
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