I notice the tone lately is giving everyone graphic details of their body - what comes out of every opening and I wonder if that is necessary. Is this the topic of conversation in your household. To use Dr. Phil's line "How much fun are you to live with?" The graphic details make me not want to eat lunch after reading it and I don't find it too helpful with Sjogren's.
These Forums are to ask for advice and communicate with other people whom also suffer from the same symptoms and Sjogren itself.
Some people are concerned when they develop a new issue or one isn't improving.
Yes I know the doctor whom treats you is the person you should mention such problems too.
But sometimes people cannot reach their doctor fast or can't get in sooner when they have an appointment in like two weeks or more.
So they come here for ask for advice, it can be 'embarassing' to ask such questions about stools, urination and everything that has to do with that.
But it might actually help them by asking, or make them feel less worried.
They are just looking for help, and sometimes it needs a more specific explaination so other people can offer advice.
After all we all are in the same boat and I don't think any question is stupid, disgusting, gross,...
Of course that is my opinion about that.
I would say that if you get disgusted by reading very specific explainations by fellow Sjoggies of certain problems that are GI or urinary/feminine related.
You should just skip those topics and don't continue reading if you come across one and didn't know what the discussion was about.
As a famous person supposedly said, "Life is messy." And that's the truth.
Shani,
I am well aware of what this board is about - I have been on it for years. But LATELY it seems like some people like to go into very gross details and it has nothing to do with not getting in to see their doctor. I have had Sjogren's for years and I don't feel I have to give every detail that is not helpful. I am in the same boat as everyone else. Questions of any kind do not offend me. But who cares about snot? Who cares about every detail of poop? I worked in a hospital and am well aware of everyone's bodies and have never been disgusted by them, but I found most people like to be a bit more dignified. But maybe poop and snot are more comfortable in your vocabulary. Don't be so condescending. I certainly know that I don't have to continue reading when a person seems so bent on telling us about snot running down his/her face.
Hi Sarah~
The graphic details don't bother me cuz maybe I'm too embarrassed to ask the question that someone else finally got up enough nerve to post about. I think we are all in the same boat one way or another...like ya said. I hope you still find the boards helpful!
As for my Shani girl...I don't think she was trying to be condescending! If you've been reading the boards for a while, try to remember she is 16 and one of the most SWEETEST AND CARING people on the board!;) I read her post as a kind suggestion so you didn't have to be so disturbed about the content of a post.
I hope you continue to post and read through the board...we all contribute some how, even if it is to listen to a poop story cuz no one else understands like we do!;) You said you worked in a hospital and it didn't bother you. Could you maybe share your expertice on some of these threads so we could benefit from your knowledge on those hard to talk about subjects?
Sha~ post was written with compassion...just FYI cuz ya never can read the '!' And '.' and know if it's being sarcastic or condescending.
This is just my humble opinion:
I appreciate that we are all free to talk about all our bodily details on this discussion board. It helps me to compare the symptoms of others to problems that I'm having myself. There are things that we don't want to discuss with our spouse or friends. But here we can be brutally honest without embarrassment and, hopefully, find some answers to our fears and pain.
My apologies if I've misunderstood the point of your post. I don't recall some of the comments your specifically mentioned (snot & poop). But I'd hate to see people feel the need to censor the descriptions of any real SS symptoms that might help others.
Deb
Everyone--please let's stop acting all out of joint and "sorry" if we have said anything "to offend anyone." One person or two posts something and many of the rest jump out and say, "oh my, I hope it wasn't me." Usually, if it was you (or me) someone has probably told us in PM or some other way.
Please get back on track and stop doing what I call the slingshot. This is when "we're all sorry for everything." I do not mean to imply there are not some annoying posts, but can't the majority act as is we are at least somewhat appreciative of this forum? No, I'm not sorry. (I don't think I offended anyone.)
Ditto!
Hi Everyone,
I'm definitely new to this board and Sjogrens. I mean, I just found out this week. I don't want everyone close to me thinking I'm all about my illness and make them uncomfortable. But you guys are living this thing with me, and sharing your information (no matter how gross or embarrassing) it helps me. Truth be known, sometimes I feel like I'm going crazy with all these things my body is going through.
So please, post away, help me to understand. You guys are making me feel better by sharing.
Hugs,
Sandisue
Quote from: Sarah on December 17, 2010, 03:29:52 PM
I notice the tone lately is giving everyone graphic details of their body - what comes out of every opening and I wonder if that is necessary. Is this the topic of conversation in your household.
1 - YES, this is the topic of conversation at times with my husband. It's necessary to keep the spouse updated on changes and conditions in my body. It's an adult conversation and totally necessary.
2 - This is a place for people with Sjogrens to come and to openly discuss what is happening. This isn't a tea party or a garden party. This is reality.
QuoteThe graphic details make me not want to eat lunch after reading it and I don't find it too helpful with Sjogren's.
Then dont' read it. :P
I agree 100% with everyone who has responded to your post, Sarah, telling you we have to discuss our bodily functions here. Shani put it sensivitely and eloquently as she always does. :-*
It is absolutely crucial to our sanity and well-being to share details that very few - if any - people in our day to day lives can help us with. Or want to hear about. We are here looking for sympathy and fellow-feeling and to share our hard-won experiences. It can help us come to terms with our difficult and messy episodes to help others in the same position.
Sha is absolutely right - if you have medical experience that might help, please share it. But eyeamdry is also spot-on when she says we don't have to apologise to you.
If, as you say, you "don't find it too helpful with Sjogren's" then maybe you are one of the lucky Sjogren's people who don't suffer from the more "disgusting" symptoms that some of us endure.
"Who cares about every detail of poop?' - well I for one am immensely grateful to read other people's experiences and advice - no matter how graphic.
"How much fun are you to live with?" you ask. Alot more fun than I'd be without brave people sharing the "very gross details" that you think are "not helpful" or "dignified". "Don't be so condescending" you rather rudely say. Take your own advice.
My guts are flaring at the moment and I'm miserable and in pain. THANK G-D I have this board to turn to. Skip the posts you don't want to read. Sensible people do.
Suzie
Oh Dear God,, :(
Interesting how you changed your identity to a "guest".
I'm with all the rest and if you don't want to read the details, then don't open a thread entitled, Constipation discussion, GI problems, etc. If I'm not mistaken, everyone still has a right to CHOOSE what they want to read.
Quote from: navydad on December 18, 2010, 06:14:26 AM
Oh Dear God,, :(
My thoughts exactly. Look for a uplifting post in a few seconds.
Okay - those of you who think certain topics are okay - nobody's stopping you from going for it.
Those who don't, it would be better to simply stay away because if you put up a topic about not thinking some of them aren't particularly appropriate, you will get slapped down by some as Sarah just was.
Lily
i LIKEY the poo threads...'cause that might be the only time i see ~POO~ for um maybe 3 or 4 days!!! ;)
it is what it is!!
i LIKEY u 2 my sweet pixie friend shani! ;D
~*flutterfly...back on boards!*~
It it helps others to feel that they're not alone, then the "graphic details" being shared have a place here. If anyone feels uncomfortable about it, then just move along and forget it. Simple as that. :)
I assure you, I NEVER had any issues with bowel movements until this insidious disease called Sjogren's Sydrome took over my life. It is a very real complication of this disease.
I also have gastroparesis, another gift of Sjogren's Syndrome. So sorry, if the thought of continuous vomiting/non-stop nausea offends you, but feedings tubes are a reality for many of us with gastroparesis. Unpleasant yes, but we need to get nutrition somehow.
For some, SjS has "attacked" their lungs, CNS, eyes, mouths, etc. For me, it's my GI system and my mouth. We tend to read/respond to the posts most applicable to our particular issue(s).
My grandmother died from an impaction and thanks to Irish, I have a better understanding of the importance of good intestinal health and that's not something I'm going to get in my 10 min visit with my HMO doctor.
Please understand that while the topic may not apply to you, others may appreciate the content and you can choose to simply not read it.
Hello 'Sarah'. You say you've been on this board for years and yet you post using a 'Guest' id, a characteristic of a 'troll', someone whose sole purpose is to stir up trouble, often in an anonymous manner. With any luck the moderators will verify the IP address of this and your primary id and ban them both.
Quote from: flutterfly on December 18, 2010, 11:30:48 AM
i LIKEY the poo threads...'cause that might be the only time i see ~POO~ for um maybe 3 or 4 days!!! ;)
Yep .... sometimes the only time I see it for 7 days.
(a bit frightening when that happens!! al sorts of scenerios go through my head)
I think it's inappropriate for anyone but the moderators to post what other members should or shouldn't discuss. If you take issue with a particular post there is a button that says "report to moderator" in every post.
It's then up to the moderator to PM the offending person, if they feel it's warranted.
End of discussion.
Sarah and all,
These boards are here for people to seek help from each other.
Sarah, your initial post is NOT helpful; it is critical and should not have been posted in the first place.
It was not in any way asking for help or designed to help others.
Perhaps you had some other reason to post it; please refrain from making critical posts in the future.
Spring
Thank you, Spring. ;)
We all have enough negativity in our lives. We do not need any more.
Sometimes what we deal with is gross, disgusting and what amounts to "our lives". I feel so fortunate to be able to discuss whatever we need to here.
Have a wonderful day,
Melinda
I feel sad, that the one place where we feel we can truly be ourselves and open up about our health issues, pleasant or not so pleasant, we have to sugarcoat everything so as not to offend or upset people. I don't particularly like reading about stuff so graphic, but Guess What? it is real everyday life, it happens, if there is something I'm not comfortable with or reading about it, then I skip it, and move on. If I ever have something to say, I could Never hide behind an other ID, I liken that to when you see on the news all these extremist and rebels who are here to say what they think & change the world, but they hid behind masks or those balaclavas. If life was Roses & Candy we wouldn't be here in the first place. If we have to stick to topics like dry eye, and our hair falling out, then this site would not meet peoples needs would it? I can't get that personal about certain things that happen to my body, but I commend anyone that can. Because that person feels comfortable enough with us to open up about it. Ok I have said my piece Big hugs to everyone. Muwah :-*
I can't talk to my family about any of the SjS symptoms and details, much less the graphic ones---they're not interested, and yes---they can get offended. Thanks goodness for this valuable forum where we're free to share all this!!!
C
I say "POST ON".....being new to the disease I need to learn all I can from people that share the same issues as I do. I feel more informed and less intimidated when it comes to see my doctor! (Tommorrow is my first Rhuemmy appointment!) In fact, the other day I had a very bad day...alot of complaints ....muscle and bone aches, eyes burning etc and telling my husband about it....normally he is very sympathetic and interested but that day he said..."Do you realize I have been home for a total of 45 min and it has been non stop about the issues you have been having?" I felt bad and guilty....so I say thanks to this site and ALL postings....it is a place to be informed, vent , and support! :)
I agree with you Diane and someone else said about until they have walked in our shoes. most people have limited. Sympathy/empathy for us. So after our support their is exhausted then we come here for acceptance and understanding. The name Sjogren's World is so fitting, because there is the real everyday world then there is the world we live in and that is the world of Sjogren's. Brightest Blessings To All xx
I have so learned so much from the great (and sometimes graphic) information that people share on here. I have never been offended by the depth of detail, as it is just real life, for some of us. I am grateful that people are brave enough to share such personal details, in order to help others. xx
Sarah
Sorry this disease comes with a lot of gross symptoms and I for one value this site as it is a place where I don't feel so alone and abnormal.
We are not controlled by anyone and no one makes us read things that offend our sensitivities.
So like someone else said Don't read it if it offends you.
Jules
When I started the thread about constipation I knew that it was going to bring out a lot of "feelings", etc. Talking about a bodily function is something that people avoid like the plague.
However, with all the gastroparesis that is developing on some of you I thought it was appropriate to talk about the subject. Some of the stuff that we go through with our "systems" is strange, scary, unheard of cause nobody talks about it and we can be scared to death cause we don't know which way to turn.
I thought it was time to bring this out in the open. Some of the bodily function stuff is more of the every day garden variety problems but sometimes there is a very fine line between the garden variety and a really, down to earth medical emergency or life threatening condition.
The only way to hear about it is to talk about it here. You are right when you say that you won't hear about it at the doctors office as we are afraid to mention this type of stuff to the doc. It is right up there with telling your kids about sex.
If there are any other issues that come up that need to be discussed to help improve your health care I will do it again. I can't stand by and let people suffer from something that is a potential health hazard. As an old grandma RN I don't diagnose or prescribe but try to help sort out symptoms and advise people to see the doc. I can also describe certain scenarios that could develop and leave it in your hands as far as deciding what to do about the situation. Irish ;D
i personally have found this site to be a life saver,literally,.i feel that we are more knowelgable than any gp or rheumy,some of my symptoms i am too
embarased to tell my gp ,everyone on here are so friendly and helpfull that i dont feel alone anymore with this isolating illness,every forum i go on there
is always one who tries to upset people ,why do they bother reading these posts in the first place if they offend?
anyway i would like to say a big thankyou to everyone on here for been there for me
love liz xxxxxxxxxxxx
I;m glad this subject came up,, I thought for sure I had a blockage the past few days, today some things are moving,, ot without the help of miralax abd some stool softeners,, its not all straught yet but maybe we turned the corner on this,, I hope,, just seems to come and go
i personally have found this site to be a life saver,literally,. (quote from Lizzi - not sure how to post quotes)
I agree totally, what I've learned from real people on this board in the real world with real problems like mine has pulled me through THE most difficult time of my life. YOU gave me the information to know what to tell my dr. and what questions to ask so that my dr. knew what direction to go in to help me. YOU gave me the courage to change to a new GP after my old one told me I needed psychiatric help. YOU told me what I could do on my own to help, giving me much needed relief that NINE different doctors couldn't give. YOU told me I needed to see a rheumatologist, when I had gone to SEVEN different kinds of specialists who didn't have a clue, YOU gave me support, encouragement, and HOPE. And yes, a lot of graphic info. that I SO needed!
Finally have my first rheumy appt. in 2 days!!!
THANK YOU, THANK YOU, THANK YOU for ALL the details, keep 'em coming!!
Joy
It's a good thing to get more comfortable talking about bodily functions. At one point in my life, I was suffering from terrible hemorrhoids, and was using warm water in an ear syringe to get things going----the pain was unbelievable. But I was embarrassed to tell my doctor, and lied and was vague, and was given some medicine to slow down my transit time----based on the faulty info I had given her.
Just knowing that many other people can have the same problems, and getting used to the language used to describe it, makes it so much easier to ask for help from the docs.
Calli
Navydad---good to hear things are moving again!
Good luck MiJoy and I'll keep my fingers crossed that your rheumy is on the ball for you.
Take care of yourself -
Patze
Poo. There, I said it.
gphx,
;D ;D ;D
irish,
Well said, as always! I believe the vote is in: Please continue your informative posts. You inform us with positive information in a professional but easy-to-understand way. If someone has a problem with that, they probably haven't "walked a mile in our shoes".
I learn more here than from ANY doctor. POST ON, lady! ;)
Blessings to all,
Melinda
Sounds like SARAH needs to go back to mamby pamby land and leave us sick folks alone.
I don't think that anyone should be afraid to describe some symptom that has to deal with a bodily function that Sara feels offended by. Maybe Sara is not mature enough to deal with the reality of some peoples medical conditions and symptoms. If you don't like the way a post is going then don't read it. I have never seen a post on here that had not come from an honest problem. People should not have to be afraid to post for worrying about offending the people who don't like to deal with medical problems. Lesley
Oh my gosh Gphx, that is too funny!!! :) :D ;D
Patze
Hi,
Anybody who wishes to jump on me, go for it. Won't bother me one bit. As said in another response to another topic, I'm from the New York metro area and we call 'em like we see 'em, too.
It would be nice if this topic was put to sleep. I don't see that it was irish's post per se that was the reason for the topic in the first place. Pointing out the dangers of impaction is obviously a viable subject.
Might have been the other stuff - by that I mean the ultra-descriptive language used. And by the way, why would one draw the conclusion that somebody anybody who doesn't draw diagrams or talk the talk in that regard is "immature."
I know of people on the Board with Sjogren's-associated GI difficulties who have never and probably will never go into excruciating detail. There's an old saying that "less is more."
Sorry y'all don't have your own page for those "mature" types of issues.
Lily
In real life, a room empties pretty fast if one tries to discuss the specifics of stooling. Usually the 7th grade boys remain the longest and then will ask if you want to light your own methane.
Quote from: Sarah on December 17, 2010, 05:46:02 PM
Shani,
I am well aware of what this board is about - I have been on it for years.
Then, why the incognito "guest" post? Don't like it? don't read it! Wow, be more sympathetic...
Hi folks - just a clarification on when the name on a post appears in blue with "Guest" underneath it. That shows up when a person who has been a member resigns from Sjogren's World and is no longer on the list of members. The threads that person may have started or posted in all show their name in this way after they've resigned. It just means that Sarah withdrew her membership, that's all - no attempt to hide.
Take care,
Genko
sewandsew
;D ;D
susanep