Is it Friday yet?!?!?!?!? :'( I am running out of saliva.....really bad. It is starting to affect what I am able to eat at this point. I still don't have much of an appetite. So I thought I'd have a sandwich for supper tonight.
First, I grabbed the hoagie buns. Then after much thought, I decided against the hoagie bun and went with regular bunny bread. And I am so glad I did. Because I BARELY got my sandwich down. I had to take a drink of tea with every bite just to be able to swallow the bread. And FYI.....soggy, tea soaked bread DOES NOT taste good!! lol
And I honestly don't think I could have swallowed the hoagie bun even with the tea. :(
I am SO ready for my appt on Friday......but I am scared that my road to a DX is going to be a long one! Thus my suffering will continue......
And I want to say THANK YOU all very much for allowing me to hang out here despite not being DX'd. I have learned so much from y'all! I really don't want anything to be wrong with me......BUT......if I don't have SJS, I sure am gonna miss hanging out here!! ;D
Thanks again for everything!!
Lisa
First, try to eat food that is moist not dry. Always take a sip not a drink with your food. I sip water all day. The three S's of sjogrens are sip, swish, swallow.
I used to have a soda with lunch all the time. Now there are times leamon aid or water will work. Good luck on your 3S's!
I have to drink a soda pop with everything I eat or It wont go down...even my doc recommended it. I know its not good for me, but the only way it breaks down my food. I also cant drink cold water at all, it has to be almost hot, then it really seems to help break things down. The allergy season is driving me nuts with the dryness. Hope you can find some relief.
Gursie
Thanks so much for the replies!! I am on a med that makes all carbonated drinks taste flat. So no sodas for me. :(
Thanks so much for the tip on the 3S's!! I will be sure & try that!!
And lemon aid sounds REALLY good!! Maybe that will work as well as a soda????
Thanks so much again!!
Lisa
LiMarie:
I can't remember what I gave up first: meats or bread. I think bread. Now...at least 20 plus years later...if I eat a bite of bread, I chew and chew and chew. If I don't eat a second bite I am fine. Go for the second bite, and I run to the loo. I really can't swallow it. Meat? In the beginning I would eat less, less, less. When it got to about 3 bites, I just stopped. I will eat meat in a salad (chicken) and a little shredded beef in various meals..but in small amounts. I can swallow greens, veggies, etc. I am most comfortable eating things like potatoes, edamame (yum), and anything soft and chewable.
What we have has nothing ( I guess I should say most often) to do with dysphagia (which requires esophageal stretching). Ours is absence of saliva. As others have said, use creams, gravies, etc to assist swallowing drier foods. If you use ONLY water...and eating a sandwich...the bread will naturally swell (from the moisture) and will hit the dryness in the esophagus..and there it stays...or lingers. Horrid feel. Remember this: water does not COAT the esophagus. It just runs through it. No one has ever hated retching anymore than I do. ALL my natural life. Well...not anymore. Starting at least 6 or 7 years prior to my dx it began ....or I should say I stopped refusing to expel whatever was stuck in my throat. Remember ...I had no clue what was happening. Actually...I did. I thought it was dysphagia.
Between now and Friday, eat soups and soft foods...or frozen dinners with sauces...I eat Healthy Choice "steamers." You will adjust. AFTER you start your meds, your esophagus will remain drier than normal. That is, you will still have swallowing problems until you modify what you are eating. I didn't KNOW that and lost much weight over a several year period. Now...this year...after losing another 8 or 9 pounds from about Aug to Jan...I have packed on about 6 pounds in what seems like overnight!! Well... I am eating more "accurately"...ha, ha.
Good luck dear. Have a good day. :)
c3
One of the questions I have been asked at Dr appts. is, can I eat crackers?
Dr wants to know if I can swallow dry foods ( lack of saliva).
So you will let your Dr know of your situation with food.
Dr. may do a spit test. Some do not.
Pilocarpine will help produce saliva.
Lemon juice helps promote saliva.. so adding some to water you sip throughout the day is a plus.
I was cautioned to not 'drink/chug' water (as that washes away protective mucosa) rather to sip.
Other times chew Xylitol gum helps promote saliva and remove bacteria from teeth (our ph tends to be off and bacteria can be higher). So after eating take some water and swish and spit.
Fluoridated water has protective value according to studies on children.
Sugary products should be avoided. Sodas have a negative effect on tooth enamel. You can look up studies if this applies or you have children (full strength fruit juice as well). Mountain Dew was the worst in some studies in a particular region.
There is always the option of moderation.
At dental check up you can ask about a fluoride treatment. And ask Dentist about best product for your needs. But, the pilocarpine should help, it helped with the texture of my tongue as well. Brush teeth, brush tongue, lips and massage gums and inner cheeks. Just takes an extra 2 minutes.
Wishing you the best with your appt.
Thanks so much for the replies!!! I intend to get the stuff to make some lemon aid when I go grocery shopping tomorrow. I am not one to "chug" anyway. I drink my tea through a straw. IDK why but I have to have a straw! lol
I truly appreciate the tips & well wishes with my appt :)
I live a little more than an hour away from my rheumy. And that is one way.....so when we are there we usually stop at Sam's Club and stock up on things. My appt is at 11:15 CST. I will post as soon as I get home!!
Thanks again!!
Lisa
I'm big on sauced foods and well cooked vegetables. Even though I use to love fresh carrot sticks and celery, and other fresh veg, now I chew and chew and chew.
It's not just lack of liquid in your mouth, but also the enzymes that break food up.
Take small bites. Acidic foods can help stimulate salvia - lemon, lime, tomato.
Soups are good, and so are stews.
You'll find what works for you.
I've noticed that I'm having trouble with salty foods and a little with dry foods.
I eat a lot of veggies and this seems to help a little with dryness!
I drink water between meals. Sip during meals.
I chew gum and use sugar free lemon drops.
Low salt soups sounds like a good idea!!!!
I'm wondering if watermelon might help with dryness? So hydrating!
GREAT ideas!!!! Thanks so much!!
Really appreciate the advice & y'all taking the time to post!!
Lisa
I can't eat anything even semi-dry without taking some liquid with every bite. I remember already few years back, way before my dx, I kept wondering how on earth could people eat an entire sandwich without anything to drink? Later it made me feel silly that I didn't realize it wasn't them, it was me who was "not normal".
I can't manage even one potato chip! French fries, cooked potatoes, anything. No way they're happening without something to drink. With.Every.Single.Bite.
And my mouth isn't even terribly dry!
Also, I find I too don't like eating much meat anymore. I guess that's good. But also, chewing raw carrot or a mixed sallad is a lot of work, sometimes I just can't do it because my jaw gets too tired and starts hurting.
Lisa, I hope you have a good dr visit and that he really listens to you and understands.
Thank you so much!! When my swallowing problems first began (a few years back) I thought maybe I just needed to make sure my food was chewed up properly. So I started counting my chews.......and when I would reach 20, I would swallow. In the beginning that seemed to help.....some. BUT now sometimes I even get strangled easily on liquids.
I am still in the habit of reaching 20 chews before I swallow......most of the time. But I too have found that some foods require aggressively chewing to 20 and it is very tiring. I can't chew gum for very long. If I do my jaws start popping and start hurting. So I just avoid it!!
I appreciate all of soooooooo much!!! 8)
I have learned so much by hanging around here.
Well I've had a pretty busy day today and boy can I feel it! I think I am gonna finish watching this Big Bang Theory re-run, and then hit the hay!!
Thanks so so much again!!
Hope everyone gets a good night's sleep tonight.......
Lisa
Lisa, I, too, have no saliva in my mouth, I mash everything to bits and then put yogurt on top, like catsup people do. I drink only table water, no ice, no ice cream.. nothing cold. I sip swish and swallow after eating. Hot coffee with milk after dinner. When I wake during sleep, it's every two hours with a tongue like a week old sponge, can't talk.. I keep a bottle of water in the bathroom to sip swish and spit out. I take a sip or two. Any more water and I'm using the toilet. I put drops in my dry eyes every two hours, and Vaseline my lips and nose. That is My SICCA syndrome part of Sjogren's. I take water in the car so I don't choke talking too much and at home and on the home phone. It's like living in the desert.
I have referred to my dry mouth as being "as dry as the Sahara Desert" lol I am so anxious for tomorrow to get here. I am so hoping that I will get some relief with this "desert" in my mouth. If I don't get any relief, I will not survive summer time. I live in S.E. MO and it can get pretty hot here. But what really gets bad is the humidity!!! When you sweat like a pig while your standing still.......not good!!
Gonna think positive thoughts!! Thanks so much for your reply!!
Hope you have a great day!!
Lisa
Make sure you get something prescribed to help with dry mouth, either Evoxac or Pilocarpine. I take Evoxac, and it helps a lot. It doesn't totally take away the dryness but lessens it significantly. Be aware that there are different generics for the Evoxac, and some work better than others. I found one that worked, and now the pharmacist only orders that one for me.
Also, sugar free gum helps me a lot between meals to stimulate saliva.
I enjoy iced tea with either sugar or Splenda added for drinking.
Becky
The name of the company that makes the generic Evoxac which has worked for me is Ranbaxy. You would need to speak with your pharmacist about getting the generic made by this company.
Becky
Thanks Becky!!! I am a tea drinker too......splenda tea that is!! ;D
Hope you have a great day!!
Lisa
ciao i know this frightening feeling very well... i put a lot of olive oil on everything(im in italy so we already use a lot) i cannot take evoxac or salagen bec its not good for heart but when im very dry i wash my mouth with little water where i put drops of pilocarpine drops for eyes and it works a lot. i take ubiquinol and seems that it works a little. i almost always use sausages and baby food on meat, chicken pasta etc. i always have a big thing of bone brooth that i make twice a week. i use jelly of bone brooth on pasta and rice. i miss pizza!!!!! im italian, i miss crackers that were wonderful for my gastritis, i miss biscuits and im careful with them even in my morning tea. its sad but no other solutions...
LiMarie: This is a first appt story I thought you'd enjoy. So here I am..THE day I go find out what's wrong with me. Amongst all the questions asked by him was "do you have trouble talking?" Well...I thought he meant language output...not articulating on zero saliva. So my answer was "no". On that alone he decided I didn't have SjS. All tests were positive, so his take was wrong. I've always thought that was funny tho. Question anything before you answer just in case!! Good luck.
c3
You guys are THE BEST!!!!! I am REALLY gonna be sad if I have to leave this forum......I am so appreciative of all the advice & tips y'all have given!!
And c3 that is too funny!! I will be sure to keep your advice in mind!! :)
Have a great day all!! :)
Lisa