I don't care what "they" say ...

[Epson]

I felt the same way about SS a few years back, then I found out that it was a lot better then cancer or three or four other illnesses I have.  Life is a Smorgasbord of crap sandwiches, may I have another?

[eyeamdry]

Good to see you again, Epson.  Don't know if it was you or me that was away.  Maybe neither.  Lucy

[Patze]

Nah Epson, I think you have way to many plates as it is!  Teasing my friend, and I sure hope that you are feeling a bit better these days.

Take care now -

Patze

[Linda196]

First, I want to make very clear that I am posting my own personal opinion, what follows is in no way a "moderator statement" nor does it reflect any forum policy, this is strictly LINDA. And I'm sorry, but Linda is long-winded!

Just as Sjogren's affects each of us in our own way, and each of us reacts to treatments in our own way, we each have our own emotional response, and that is a deeply ingrained instinctive reaction that can not be changed by other's suggestion. What can be changed, even if ever so slightly, is how we deal with our emotional reaction. What is common to all is the underlying trigger of those emotional reactions, and skilled psychologists have developed techniques to deal with those triggers and reactions, and those techniques, used by each person in their own way, can and do help!

I'm basically a Pollyanna person, have been since my earliest memories, which involve waking up in a hospital bed after what I learned was a fall from a roof, and being glad that I wasn't wearing my new pedal pushers when I fell and bled all over my clothes! My Mom got a great laugh about that. That attitude has helped me a lot, but even that had to be tempered at times, to allow me to grieve for losses, and learn to cope with new situations that resulted from them.

For those who try and manage to be positive at all times, I commend you, but caution you that this can lead to denial. For those who try and so far haven't been able to, keep trying! For those who haven't so far found anything to even pretend to be positive about, try, every day, no matter how difficult, to see or hear one thing, even if its something so simple as a child laughing next door or the fact that years ago you painted a wall a colour you still like; hopefully that can become a habit and finding things will become less difficult. I also urge you to seek the help of someone, anyone, who understands loss and can help you learn to deal with your losses, which are every bit as real and serious as for people with cancer or those who have been bereaved..

The intention of this board is to provide that kind of helpful place, and I'm sure that any suggestions made that may sound harsh or pushy, are meant well, and people do realize that not everyone has the same symptoms, reactions, losses, or coping mechanisms... it's just such a need to reach out and help that leads them to their posts.

[cmclien]

As a new person to this board I am torn about this whole subject but will give my opinion.  I suppose I came here looking for information, knowledge and support firsthand from others that have this disease.  I thought thats why it was here.

I have stayed away the last few days because of some of the posts bringing me down so much.  It freaks me out and makes me anxious because I think is that where I will end up?  Though I know the answer is for most people NO and some people seem to have a mixture of diseases with symptoms coming from all of them.  I told my husband I don't know if I can keep going there but thats not fair for someone like me either right?

So after giving this all some thought I decided I think people should be allowed to vent I just don't read them anymore, or if I start to and if its too acidic (??) for me then I get out of it and move on.  I guess the bottom line for what I think is those people should be allowed to say what they have to say and those who are with them should be allowed to respond and those of us who don't like what is being posted should be allowed to NOT read or respond in return.

[goodheart]

I am new here, just got diagnosed with Sjogren's 8-9-10..This stuff is pretty scary to me.  But I appreciate the honesty. I have been sick for about 3 years and finally went for help.  My heart goes out to NAVYDAD, he seems completely wore out.  I wonder how long he has been sick and should I expect to get like that. 

I also appreciate the upbeat people too, it helps alot.  Although I don't mind the negative ones either (to a degree)
Thanks for all the info.

[navydad]

Goodheart,, (love your name),, NO ONE can tell what the progression of this disease will be,, If you have read over some of my post,, you will see that I have been told I have SS,, and been told by the Mayo clinic that I dont,,,
  But theres plenty of people here that DO have it,, and some have the annoyance of dry eyes and dry mouth,, which can be bad enough,, but toss in some neuropathy to go along with it,, and a few other (gifts),, and you can see it can get quite disabbleing

[cmclien]

Navydad - So if Mayo says you don't have SS then what did they diagnose you with?  and what were their reasons for saying you don't have SS?  I know you're seronegative but my rheumy (who I think knows his stuff and has been doing this for 20 years) just doesn't buy that as a total basis for ruling out SS (thats why I am wondering what they told you).

Can you have SFN by itself as a disease?  I think you can right?  I don't know what your other symptoms are but did they rule out SLE?  You can't go out in the sun right?  I read that is a symptom of lupus, not SS.  Also, is your thyroid ok?  You sound like you're cold all the time too. 

I have read so many of your posts and you seem to be really on top of things with your own health but it doesn't sound like much has helped you.

[inga]

It is the neuropathy that is so disabling, and I know, I have it.  It was my primary diagnosis.  I have autonomic and the sensory neuropathy....and a high ANA, and a positive lip biopsy for what that is worth, and it hasn't been much.

I am on the verge of needing some type of ambulation aid.  The pain is very bad as well, as it ALL bodily funcitons, from gastroparesis, to arrhythmia, to messed up circadian rhythm.

Every day, it takes will power to get out of bed, since my ankles are kind of frozen and I can't bend my ankles and when I land on my feet, I feel terrible pain, but, I have no choice.  My entire family knows it hurts, and there is no need to tell them every time I walk, cuz they see it.  Even worse, I fear this is genetic.....I am sure they fear this too.

It affects my hands....there isn't much I can do without help, in terms of my hands, but I have good days, and I do what I shouldn't do and then end up doing 'nuthin' for two weeks.

No, there is no pain med that helps, and one gets  tired of begging for them....it just robs one of dignity.

So there is no denial as to what is coming, or even what is.....IT JUST IS.  I won't lose a single day of my life to it....today, I went to see some Tall Ships....and my cognitively disabled kid knocked my brains out with the tailgate of the car.  She sat in the car and cried all the way home.  It would have been less dramatic had she not knocked me flat out onto the ground...nice ashpalt parking lot.  And truth be told, there are TWO goose eggs one on each side of by skull, but she can't see the one in back and she doesn't need to....she feels bad enough about the one in front.

Was it worth it....?  yep.

 Am I Pollyanna, heck no, but I was relieved to get up without the EMS being called and my clothes severed off of me for no good reason.  I am fine, really.  I have nice pictures that make the day look really nice and when I am senile, as my mother and grandmother were I may look at those pics and remember something besides the knock on the head and fall on the butt.

The thought struck me to stay home, today, since, I am in pain now, since I have to sign a pain contract now, 'new policy' at my clinic and I declined, on the grounds of 'dignity' so I am living on neurontin and tylenol....which, btw, doesn't work much....but, what the heck....it at least makes me feel like I am taking something....can we say placebo.

No, life is not a bed or roses....not at all.  Hubby went on to the gun show....I told him, 'No pistols'.

Life is about grit....and I am not talking about what I feed my chickens.  I carry my own pack......I  hobble where I have to go....I clean up my own doggy doo.....and onto the next day.  If you need a lift, I will pop you in my red sled and tow you until I can't take it and tell you to walk the rest of the way on your own....you may get a 50 foot ride these days.

I don't think any one can look at any one case on here and predict where this disease will go.  And I am a firm believer that attitude doesn't dictate the course of our disease....the most positive person can die early and frankly, that is usually the case.  The angriest people live the longest but not happily....so somewhere in the middle lies the red road....the middle of the path,  where one does not fall of either side into oblivion.

[inga]

That is 'Bed OF roses', but I got hit on the head today, so I am not quite perfect today.

[inga]

BTW, hubby is back from the gunshow and didn't buy a thing...he never does.  And now he took off with the 3 labradors to walk them.....and I am stuck here watching HGTV, which always lands me on overstock.com or ikea.com, PLUS the baby poo'd 2 days worth of organic sweet potatoes....and I had to change it....not grampa.  It has been a long day.  I feel like life is one of those 'Zappos' commercial.  I am sure I hid a vicodin somewhere....if I could just move the mattress......

[LizPetillo]

I stand by what I said ... "They" say this isn't a fatal disease.
 I think it's pretty obvious that it IS.
The first thing doctors say is 'well, it isn't like it's fatal .... be happy ... it's all attitude'.
When people are told that it's Sjorens, the first thing they say is 'what's that?'
Then when they hear it's 'not fatal' they don't give it as much attention.

When you look at the systemic part of this disease, as a whole ...
When you look at the damage physically, spiritually, emotionally ...
When you look at the problems that come from the frequent complications ...
This disease DOES shorten lives.

I wish the information available didn't immediately come out and say 'not fatal'.
That tends to make people poo-poo this, when in fact it is a very serious disease.

I'm not going to fake being happy when I'm not just to get a random nurse to
speak more than a few words to me.
I DO TRY to find tings during the day that are happy.  Today it was the nice
breeze and the 78 degree day wit no humidity.  I love fall.  It feels like fall coming.
But when I feel like death should visit and doesn't ... then people need to know.
If we all fake happy .. then no one will take this disease seriously.  
At least that's what I tink.  Let the pain be shown, otherwise, Sjogrens will be
ignored for something that is 'worse'.  
The squeeky wheel gets fixed.  The quiet one is ignored.
Sjogrens needs to be known.

[inga]

Sjogren's FIRST needs to be defined. 

No, it does NOT strike the public as a 'fatal' disease, but Lupus isn't fatal, and people are surviving 25 years with Scleroderma.

I am darn sick....but it isn't as simple as a cure for Sjogren's, for me....or for Navydad.  We have negative ENAs.  We don't carry the antibodies that are definitive for Sjogren's. 

You can't cure a disease, that is 100 possible diseases, all called Sjogren's AKA Sicca or dry eyes and mouth.

[Linda196]

@ Liz, I think you may have just defined the difference in our approaches to this whole issue! My doctors take me and my condition very seriously! They, not I, first looked for and identified the neuropathy connection; they, not I, insist on frequent testing, monitoring and analgesic prescriptions; and they, not I, pushed me to retire from what they deemed a much too stressful job. I'm sure the forms they filled out for me helped a great deal in my obtaining a disability pension on my first try.

I had to ask ( a couple of times) for a psychological evaluation to see if there was any chance that depression might be contributing to my physical deterioration. They did offer hormonal testing when I asked if my symptoms could be menopausal, as the endo said "to show me it wasn't so!" I've pretty much had the opposite experience of just about everyone I read about here...I was convinced I was depressed, menopausal or hypocondriacal, and my doctors were trying to convince me I was really sick!

One doctor in particular (an internist and intensivist) contacts me on a regular basis to inquire about my condition, and to discuss any innovations he has heard of...and I haven't had an official consult to him for 6 years!

Yes, I agree that until the general medical population learns more about this and other AI conditions, and begin to take it more seriously as a whole, many people will continue to feel invalidated, and rightly so; but I have to feel very lucky in my medical support.

[navydad]

Oh boy,, thought this thread had died a natural death,,, but I will say this much,, the temp has dropped here about 40 degrees from yesterday,, from 96 to about 56,, now before I got this SS of whatever it is I have,, this temp drop would have meant nothing to me,, not a dam thing,, I would have loved it,, but its been nothing but torture,, Inga I am sorry about the eggs on the head,, its a wonder I am walking at all today,, my legs feel like two stumps that just scream in pain,,
  I tak the neurotin,, I dont think it does much,, my ankles and feet either feel cold or they feel like there broken, they hurt that bad,,, like you,, my hands are useless,,, absoulately useless, they are good for nothing,,, I drop things,, I cant feel things,, and tehy hurt,, like you I will have to face the (contract) on tuesday at the pain clinic,, and if they dont have a good plan of action,, I;ll continue to live on neurotin and stagger around the yard taking my doxie to the usual haunts,,,
 Today is the rib fest in Pittsburgh,, it used to be a great day for me,, I love ribs,, or did,, but like you, my guts dont work right anymore,, well I better shut mymouth,, I dont want to complain to much,, and my thyroid has been checked a hundred times,,, I guess its fine,, but Liz has some good points,,, its her point of view on what she thinks,, but again,, i;ll shut up,, I;lll play nice,,, but for those that dont have SFN,, it is a living heck,, I too eventually will need some kind of aid to get around,, Iknow it,, I can feel it getting worse,, and theres not a dam thing I can do about it,,, and I;m Pi&&ed about that