I had a round of the dry cough thing while with a friend today. She said, ooh, that doesn't sound good. I said it was the Sjogren's. She replied "That's about the 100th time you've said 'Oh it's the Sjogren's" and if you keep claiming it like that it's never gonna go away." Shut me right up, I tell ya. It was really only the 2nd time I'd said it today... I believe that our thoughts and where we put our energy can make things better or worse, but it felt like I was hearing one more time that it's all in my head. Am I too focused on it? Should I get off the discussion board and stop reading what other people say? Should I just stop talking about it when something happens to me? I have always had a hard time believing/trusting my own reality, childhood abuse, illnesses, feeling really scared and yukky about certain people, and so on. Help! Diane63
Have you talked to your doctor about the cough? Sometimes we are so used to being sick that we assume that anything new is just another Sjogren's symptom. Unfortunately there are several medical conditions that can cause a dry cough and it can also be a side effect of several medications. I think it is always a good idea to have something checked out. Even if it is related to the Sjogren's the doctor may be able to give you something to alleviate the cough.
Don't feel like this is all in your head. I think your friend may have been telling you that you should get it checked out and that she was showing her concern for you. A couple of years ago I had two very bad falls about 6 weeks apart. They were so bad that the ER doctor asked if I was being abused. When I went to my orthopedic doctor for a followup I asked him if the Sjogren's was causing balance problems or weakened muscles? His answer was "Sjogren's is just the zebra in the room. My job is to ignore the zebra and fix you when you hurt yourself."
So Diane, I guess my advice would be to stay on the boards, ignore the zebra in the room, and pursue diagnosis and treatment for the cough. Now two friends have told you to get it checked out!
Take care,
Karen
OMG I bet your "friend" would not say that to someone with diabetes or a limb missing to not talk about it so it will go away!
I totally get the power of thought but come on!
Hopefully she just spoke without thinking. And hopefully you have other support in your life. If not come here. We understand.
I too have trouble second guessing my own reality. Am I just making too big a deal of this? is it really this bad? The doctors tell me it is. The support here tells me it is. You can trust yourself.
Diane,
You ARE entitled to say what you want to say. If you say you don't have sjogren's and ignore the symptoms, I am sure you will get worse. I think we all struggle with what to say to whom and when not to say anything at all. Although I don't know you, I am almost certain that your posts make enough sense that you aren't crazy and even if you are, think of all the great company you have with the rest of us crazies on the board?! ;) I think our positive thoughts DO influence how we feel sometimes. If I make myself get up and get busy, I don't always feel as bad as I thought. Does that make sense to you? lol Other times, I am frustrated when I can't do what I want.
I agree that you should get the cough checked out. I walked around with pneumonia several weeks once that I called an allergy cough. The problem is I think we all have trouble deciding whether or not we should go to the doctor. Many times they don't find anything or don't know what to do for us. One doctor I see sometimes tells me most of his patients know more than he does about diseases because of the internet. Some of them print off information for him to use. He is okay with that. Out of the few choices, he is the best around here.
Please do not leave the boards. People here care about you and it is a good place to get information and support!!
Reanne
There are things in life that affect every single waking moment. Ill health that manifests in the darndest ways is one of them. (So is hearing loss.) People who do not live with such issues don't get it. I can't dance. I can't sing. I can't draw, except a stick figure on a good day. None of those things are big issues except at weddings, birthday parties and when I would love to be able to illustrate a point. They seldom come up. So they don't really affect me much, and I don't dwell on them. Healthy people all have things they can't do, or can't do well. But they don't really affect them much, so they don't dwell on them.
Coughing (and I've coughed myself into unconsciousness) affects you however often it happens. Pain affects you as long as you have it. Hearing loss affects me whenever I try to communicate. Fatigue affects me whenever I wish I could do something that requires a lot of energy. Healthy people don't have these constraints. They yell a question at the person at the other end of the house and know they will hear the answer. They want to do something, they get up and just do it. A little aspirin or something takes care of the occasional pain.
Sjogren's affects you sufficiently that you are on this support board. That means it affects you at least daily, if not more often. Your friend doesn't get it. You can't wish this away, but ignoring it will make it worse. We have to take care of ourselves, and that means being aware of it and managing the symptoms.
If this friend can't or won't get it, then s/he needs to get out of your life. Be sure to tell her about the spoons theory, and believe in your own reality. It is the only reality you have!
All that said, I agree that you need to get it figured out. My cough was the result of "asthma," acid reflux and chronic sinus infection combined. You can have a sinus infection without pain, just a lot of drainage. And if you are on an ACE inhibitor for blood pressure, it can cause a "cough." Right. A "cough." As my Dad described it, it is like you are trying to cough your toenails up. I would vomit from the cough, and pulled some back muscles from it. And passed out.
When we are first diagnosed with something, it does tend to consume us for a while until it becomes just another part of being us. This can be when you find out why your friends are....
Hugs, Sharon
I have had "that cough" for the last twenty years, at least. I never dared to tell a doctor, because what could I say? "Doc, it starts as a dry spot in my mouth, and continues until I have to leave the room. Sometimes water will bring it under control, but a lot of the time it doesn't."
Well, if that's the cough you mean, there is something that works. Get some over-the-counter Guaifenesin (Mucinex is an expensive brand of guaifenesin, but you can get generic, that works very well.) At 600 mg twice a day (1.5 tablets at 4 mg each) I had just a small problem, break through to coughing every other day or so, and over soon. I upped it to 800 mg twice a day and don't have any more problems with break out "dry-spot-in-my-mouth" coughing. I mentioned it to my rheumy, who usually acts as if I couldn't possibly have Sjögren's Syndrome, but he seemed to recognize what I was talking about!!
If you recognize this pattern as what is happening with your cough, you might try guaifenesin, which is not terribly expensive when ordered from the cheapest supplier on Amazon.com.
Hope you get a handle on it,
Soycoffee
You folks are ABSOLUTELY WONDERFUL! Reading your replies makes me feel so much better. Most of my friends are very supportive and always initiate "How's it going with the Sjogren's". This friend is probably the exception. Your replies to my outpouring have settled me down nicely, and I think I need to use the support I have and stop talking about it to her. Also, I will get the cough checked out. I am kind of afraid to go to the doctor for fear it might be an infection of some sort, and I am allergic to or have really bad reactions to every antibiotic they've ever tried. So if it is an infection, there's not much they can do for me. But I am glad to be in such good company with you all. And yes, I will hang around and keep learning. Thank you so very much. And I think I will try the guaifenisen (sp?).
Hi
I HAVE mentioned the 'dry cough' thing to doctors and they have been completely dismissive. Well - I guess that's a bit unfair because my rheumy did send me for pulmonary function tests and the results were normal - so the dry cough was just dismissed and not attributed to anything. It is exceedinly irritating though!
Take care - Scottie :)
Someone at church asked about my health this past Sunday. I mentioned some of my pains and troubles SINCE SHE ASKED .. and then I got the "well what you speak with your mouth is what you will keep .. I believe she said the word "claim" also"...
So I know NOT TO TELL HER ANYTHING anymore. If she wants info on how I'm doing she'll have to ask someone else.
The funny part is that then her husband mentioned he was having some similar pain. Poor guy probably never gets to say that at home!
It's a shame we have to be so GUARDED when talking to FRIENDS.
(though I can't say she's a good friend...especially after this)
>:(
Thanks, all. Everytime I read one of these posts I feel better and stronger. I am so grateful to you. :-*
Sometimes gaining peace requires a negative action. If people don't support me, and have nothing positive (or realistic) to offer, then they are not contributing to my well being. So, when it comes to my personal life, I simply don't allow them the air to keep me down or hold me back.
Stay positive as best you can, know what you need and settle for nothing less. This life is a short one, good feeling is fleeting and we need/deserve well being in our lives - let no one hinder that for you.
Well there's no cure for what they have either - Ignorance.
I have a little sign in my home workroom that says "I know I live in my own little world, but it's ok, they know me here." I think it's very applicable to this site. I'm so glad to be somewhere I can be Crazy with others. To all of you with this fab challenge, just know that those of us closest to you Get It. We are there with you everyday trying to figure out a puzzle that has extra pieces and no edge. Would that it were so easily fixable with a magic pill, diet or attitude.
FYI...My husband thinks I should just go for Crazy!! At least that is successfully treatable with the right meds (and wine).
Hey Diane!
i wrote yesterday and wouldn't you know it ...when i hit post everything disappeared. And it was so awe inspiring.heehee...anyway, i digress!
First, I want to address that your friend yes, could have out of concern for you, wanted you to get your cough checked out. So do I. Please do. It can be just a cough, or a Sjogren's dry cough or a complication of Sjogren's ...like mine. Regardless, please get it looked at.
Second, If you were limping and she mentioned you being tired and you said it is just my MS, that is so closely related to SJS, she would never had said to you about claiming it. She would have understood MS..She has been educated on MS.
I quote..."Oh it's the Sjogren's" and if you keep claiming it like that it's never gonna go away." Shut me right up, I tell ya." Well, You should have told her,
You are right MARY, It is Sjogren's , a disease that is eating me from the inside, that you cannot see and yes you are right again, It is NEVER gonna go away. I hope it does not get worse! Most have not been educated about SJS. And sadly, it is up to us to do so.
Karen, no offense please, but since your doctor that mentioned it....The Zebra/Elephant in the Room does not bode well with me..
"Zebra/Elephant in the room" is an English metaphorical idiom for an obvious truth that is being ignored or goes unaddressed. The idiomatic expression also applies to an obvious problem or risk no one wants to discuss.[1]
It is based on the idea that an elephant in a room would be impossible to overlook; thus, people in the room who pretend the elephant is not there have chosen to avoid dealing with the looming big issue.
Our doctors, friends, associates, coworkers etc have been treating us as, if not only is there a elephant in the room, but it is only a unicorn. A fantasy that we are hiding behind. This is a real true serious condition. One that I am struggling for my life with. The dry cough that I had that was mild, turns out to be a "complication of Sjogren's" according to the head of lung Pathology at The Mayo Clinic in Scottsdale, AZ. The place that my lung biopsy had to be sent to because the head pathologist at The ST Luke's Hospital in Houston, TX ( a major Heart and Lung Hospital) could not discern what it was. A rare, life-threatening lung disease called, Constrictive Obliterative Bronchololitis, with a 3 yr life expectancy.
and jazz, your FRIEND that told you "well what you speak with your mouth is what you will keep .. ...Should only be so lucky that she not have a condition that would leave her with a friend like herself. For You are a kind and caring person..You are full of Grace and would have surrounded her with love. Not a quip of old maid's advice.
It is truly disheartening to me to hear that people are using words to hurt a friend..."my friends". Is it supposed to be uplifting to us or maybe a sort of intervention?? I do not need an intervention, nor pity. I need for us to take a stand and explain, sit down if you must and write out a way you might could approach the subject if asked again. If someone asks you,- how ya doing, fine thank you- might me acceptable in most situations. but if a person looks at me and Says, HOW ARE YOU? At this point I may ask, in the sweetest, most touched way I can-- "why do you ask? Do you really want to know? " that generally, gives a nice pause enough that you will know without another word.
I get so angry at reading some of this. I get aggravated when people hurt each other on purpose. We have enough to be bitter about, but we try so hard to remain positive. Then to have someone bring you down is so heartbreaking to me. I want more for each and everyone of you. You deserve it. You really do! DO NOT LET SOMEONE TREAT YOU LIKE A DOORMAT. You are special. You are strong.
We Can Explain It To Them, But We Can't Understand It For Them!
I am so grateful to you also Diane (and you Jazz and Karen) for having the courage to have said in the first place, oh it's my Sjogren's...You getting the word out there girl....Good for You, GOOD FOR YOU!!
And as Sharon said so very well and true..
"When we are first diagnosed with something, it does tend to consume us for a while until it becomes just another part of being us. This can be when you find out who your friends are..."............I am finding that out only too well myself right now also!!
Peace and Keep on Truckin.......~sass~
Wow, Sass! You really told it like it is. I am so sorry you are having these very serious complications - you seem like a person who ought to live forever with your wisdom and the encouragement you're handing out like wonderful donuts! I have taken to heart your message and am going to figure some ways to help my friend begin to "get it". Thank you, thank you, thank you.
I love this quote...
"We Can Explain It To Them, But We Can't Understand It For Them!"
Thank you Sass! I will try to remember that.
my pleasure! ~sass~
Others here can address your cough better then I can. But I perfectly understand fearing that you talk about Sjogrens too much. My husband must get so sick of hearing me say, "My mouth hurts". I try not to...but then the words pop out again and again. He IS a saint.
Hang in there. If your friend is a "true" friend, then chalk her snippy remark up to someone having a bad day and forgive her. But in retrospect if you realize that being with her has a negative effect, then maybe it's time to move past this friendship.
*hug*
Dee