questions and rage

[bluegardenia]

so after a nice 20 days calm period, since two days i have again awful reflux and everything, also omeoprazole, gets stuck for hours on my throat, and i have that mucous that everybody here knows so well.
so im ful of anger thinking of winter when everything will get worse and next years when  it will be more and more difficult. they replace pieces of  body, they put a pig valve i na damaged heart , there are people who can  run with artificial legs,they  separate the brains or the lungs of twins  who were born attached one to the other,they send drones that can see my dog while hes making pipi, cars will  carry us wherever we or they want,our computers tell us  want we want and what others want from us, why  we dont they make more efforts to find a cure for this horrible disease? may be because they sell a lot of otc meds? if there was a good cure lets say for reflux, how much maalox, gaviscon etc etc would be left  in the shops? if we could have  less dryness in our eyes and mouths how many millions drops and xylumelts and biotenes would be thrown away? may be im wrong but there is something that i dont like out there

[Sharon]

You're so right blue, they're not interested enough in finding effective treatments for us
or we would already have at least one that doesn't compromise our health in other ways.

Try to look on the positive side though: If you had a good 20 days then the chances are high you can manage to calm the symptoms again. Perhaps something triggered your flare like stress, something you ate, an infection or the weather....?

I've heard people have found many ways to control their reflux like Zantac or baking soda concoctions.
If you have mucous plugging up your sinuses, I finally found a nasal spray that helps (took awhile to kick in) called Avamys.

Here's to better days to come!

[Kathy57]

Blue,

So sorry that you have had a rough couple of days. It is so easy to get discouraged! Maybe if more researchers developed Sj?gren's, there would be more interest in treatment.  Of course I wouldn't wish that on anyone. 

I'm hoping that you will get over this flare relatively quickly and have better days ahead.  Try to do something enjoyable and nice for yourself at least once per day.  Be kind to yourself because you deserve it!

Kathy

[cccourt1942]

Oh dear Blue,
   I love the way you describe "good days"....you say "20 day calm".  It is perfect wording.  I shall adopt it.  I have  about 20 day calms.  Sometimes 14 to 20 days.  I think it's weather related...but that goes back decades before I was ever dxed with SjS equating discomforts to weather. 

I believe overall I am one of two things ..or maybe both:  1) I am accepting.  this is because I was sick so long before I knew there was anything wrong with me.  2) I am comfortable--overall that is.  My eyes, my oral region, my salivaries are pretty much under control..maybe one or two swellings every 2 to 3 months, and generally my aches.  I do ache...and it is depressing because I realize at my age it won't ever improve.  And...I carry my emergency prednisone burst Rx for a costochondritis attack.  My stomach issues are dealt with by staying home. 

I am older...and I think it's easier to accept when you are pushing 75.  I really do.  I had a great, active, life..and even worked past retirement--which I loved...and traveled so much until about 60...then settled in to flying any further than either coastal distance in USA...I live in TX.  3 1/2 hours is about max for me.  I think back traveling in my 30s with smoking as it was---how did we do it?  Where I stay in NYC is in the heart of the theater district, so it's easy for me to spend a week doing theater with the least amount of walking.  That soothes my soul!!

But to the question at hand: GERD.  I remember the last time I ate a catfish dinner.  It is likely you have never heard of catfish.  Most Americans reading this will equate it to a platter filled with everything on it fried.  Then I linked garlic...then tomatoes...and the list goes on.  To this day (NOW that I know about SjS) I will never know if it was GERD or lack of mucosa in my esophagus.  The thing is, I would throw up.  And it wasn't long enough for it to go down and splash back up.  I have read about GERD and my reflux never sounded like classic reflux.  In other words, which ever it was---I think I solved by what I ate. I did that as I hated throwing up worse than any other bodily act!  Still do. 

I have taken Prilosec..then as it came to market...Nexium.  Now that my SjS is under control (oh well..you know what I mean) I take a reduced dosage which is OTC now.  AND..the doctor says it's for my stomach...to avoid further ulcers. The truth is...as I remind him: I have had ONE NSAID ulcer...ever....and it was over 20 years ago.  I think that's a bit of overreaction.  But I take it anyway.  And honestly, now I eat tomatoes...AND will have a few bites of fried chicken about once every six months.  No problem. 

So sorry you are having a hard time.  Hoping your September will be easier. 
Sjoldier c3

[bluegardenia]

thanks everybody for your kind answers.
this reflux attack is not my first one. i had some last year and two years ago.  and it ends at some point, this is what i repeat to myself but then i say: and IF this time it will not end???i made gastroscopies, xrays scans. i have a little hiatal hernia, thats all.
this reflux is different from BEFORE sjs.its not just the pain due to gastritis , that its  just pain and i know that with omeprazole and some other stuff it will be better in some time . the new reflux  is scaring. because things go down and then  when they come up and stick on my throat. these days my throat is so sensitive that any odour makes me sick. sick for me means that it  my throat closes ;so eating is really difficult, i always have the feeling that i will be strangled. and of course there is the annoying mucous that comes with gastritis, its not nasal drip, or its not just  nasal drip bec i noticed that with reflux mucous gets worse.ok enough ranting.
ccc im so strict on what i eat!!! all my friends laugh at me!! i have a cup of camomile in the moring(yes camomile!!!), may be if im really ok ,a cup of white or green tea with four buiscuits and honey. of course  i eat the buiscuits drowned in liquids. at lunch  i have pasta, never with sauce, if i say never its NEVER, boiled chicken or some veal meat with carrots and celery juice that i make myself and may be some salad .  in the evening rice with bone broth that i make all the year round, no garlic, no onion no tomato. again chicken or fish etc. i dont eat sausages, i dont drink coffee since 30 years, i dont eat chocolate,  no pepper, no chili  or spicy things, NEVER. i do not drink any kind of alcohol, no wine no beer, nothing, never. no colas. i dont drink milk, i dont use butter, i dont eat cheese but just parmigiano, at the end im italian!!! at least this!!!.  im not celiac. all this  so happy meal bec i have diverticula, i had some attacks and i must be really careful, THAT is pain!! thanks for listening, ciao everybody

[gurs]

This disease certainly takes a toll...no one could ever comprehend what alot of us deal with. I too see so many ill or disabled people that seem to be able to live a normal life, and here Ive been almost bedridden for the last 9 years. My entire body doesnt function right and it only seems to be getting worse. Its very depressing. The summer heat and allergies have made me most miserable this year. Im looking forward to winter when I seem to feel better.

I seem to feel better mentally if I set my goal to doing one small thing a day...and I mean small. Just trying to wash the little hair I have
left is a job! ha!

Stomach issues are the worst. But, ive learned what I can, cannot eat etc, and also takes tons of digestive enzymes, probiotics, and prevacid 15mg once a day. If something is hard to digest etc...stop eating it. I love fruits, veges etc, but cant digest them at all unless they are cooked.

hang in there.

Gursie

[lorigacc]

   I have the same problem with eating, not quite as severe, but still there.  I have yet to accept all these problems, and don't want to give up what I WANT to eat and drink.....eventhough it gives me nothing but grief.  I am sure I should already be making those changes, but still haven't reached that point. It's great that you are doing everything you can....and I do hope these things start working and you get some relief.