New here...just saw this welcome board and...

[shawnbilton]

...wanted to post this here, since I posted on the wrong board earlier for welcomes (sorry!)


So great to find a group of real people with real experience and understanding of what I'm going through.  Great to "meet" yall here!

I'm a guy, 30 years old, married to an amazing/understanding/beautiful registered nurse   ...and I've had Sjs since I was 20.

        I've been tested once when I first got it, the doctor said I had nothing.  Still not diagnosed, but I've done enough research and have enough life experience with this to know what it is.  My dentist agrees that I have this at least, and he understands.  I never had a cavity in my life until I was 20.  Now I've had probably around 15 of them, but my new dentist is amazing and so knowledgeable about the effects of sjs and he says we can manage it and save my teeth for years and years to come, so I'm thankful.  I like my smile and it's one of my favorite attributes haha! I love to smile!

I have dry eyes, wear contacts, keep eyedrops, chapstick, xylitol gum and mouth sprays with me at all times, and keep some in my truck. I'm the lead singer in my Christian band and youth pastor and worship leader at my church...so the dryness is a never ending problem for my vocals.  I literally drink gallons of water a day...so thirsty all the time.  I just started using the flouride toothpaste from my dentist (has 1.1% sodium floride, compared to pronamel and others with 0.15%) and it's been awesome.

I have seemingly constant mouth ulcers and sore throat issues, especially hard with singing, but it's what I love doing along with playing guitar and leading in churches with our band etc.  I was told by my new dentist about mixing liquid maalox/antacid with children's benedryl (liquid) and swishing it around for a minute or so to treat mouth sores, and it's been life changing!  Just started doing this and it has cut down my mouth sores to almost none, where I used to get one almost daily.  amazing..try it and let me know how it works for you!

I take generic salagen (pilocarpine) and it's great for a couple hours...prescription is for 4 of them daily, so it helps a lot too. 

I would absolutely love to hear from you guys, get settled in this forum and share stories, insight, and experiences with you guys...sometimes the pain is so bad in my mouth/throat/sinuses that I find myself getting either irritatable or down a bit, but I'm praying and doing everything I can against this disease...God is able and whether He heals me or leaves me with this thorn in my life, I will praise Him anyway!  He gives and takes away, and works all things (good or bad) for the good of those who love Him and are called according to His purposes...

...with all that said, I'm here for you, look forward to being a part of this forum, and hope to hear from you all soon!   

we can get through this thing together!!!

-Shawn

[Joe S.]

Welcome Shawn,

While I am glad that you found us, I do not like it than anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.

Sjogren's – Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.

You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.

I like also suggest that people with AI diseases read "Spoon Theory" on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

1. Don't Panic – Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book "Feeling Good" by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.

2. Breathe – For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.

3. Meditate – Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think "I am" as you breathe out, think "calm". Repeat as needed. Meditation can be as good as sleep.

With Sjogren's we tend to have a lot of infections so wear your "polar fleece mumps scarf" to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.

Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.

I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.
Sip-Swish-Swallow are the three S's of Sjogrens.

[MissyLouWho?]

Welcome!  Don't worry about posting on the other board, no harm done! 

I only have a second, but I just wanted to welcome you and tell you that you've found one of those rare groups of people who never judge and are always warm and helpful . 

You can use the search bar at the top right of the screen to put keywords if you have questions about certain topics.  If not, read the previous posts on the Discussion board.  If you feel down, head back over to here and look up some of our funny threads.  "I have a Confession" had me almost peeing myself!

Welcome and I hope to see you around!

[WildThing]

Hey Shawn, welcome!!! *hands Shawn a stiff drink*

[iraisin]

Hi Shawn, Welcome to the board.

At the bottom of a lot of our posts are diagnosis and OTC products along with prescriptions that we use to help us. So you'll get some good intel there that may help with some of your symptoms.

I use a product that is out now from Halls, called Refresh. They aren't cough drops, they just get your glands working. Some throat lozenges may help, but I'm sure you've been doing this a while and use those already.

Yes, it rains on the righteous and unrighteous just the same. Rest knowing that you are His child and He loves you enough to die for you. He's what gets me through this.

[Meld256]

Hi Shawn,

Welcome to the forum! 

I apologize I'm a bit late with the welcoming, but glad that you've found us.  I think you'll find us a friendly, helpful and supportive bunch.  I've also learned more here about how to manage this illness, physically, emotionally and spiritually from this wonderful group more than I would have ever imagined.  I hope you find the same!

As you look around, you'll find loads of information about almost anything at all.  Please feel free to jump in and comment or ask questions, etc.  We're always happy to have another member with which we can "compare notes" and encourage one another.  We also have quite a few new members who are about your age.  So we're not ALL a bunch of old ladies.   

We look forward to hearing more from you!  Again, Welcome!
Blessings,

Melinda

[Scottietottie]

Hi Shawn 

Welcome to Sjogren's world. I hope you find the site useful. It's certainly friendly and supportive.

Take care v- Scottie 

[lynnmarie219]

Hi Shawn!

Just adding my welcome to Sjogrens World to you as well! I am glad you found us and hope you find the information, support, and friendship here that we all enjoy!

Read all you can and if you have any questions or comments...just jump right on in...someone is always around to help out or comment on their own experiences.

[susanep]

Welcome Shawn, and glad you found us, but sorry that you have too.

Wow, I am going to have to try the thing for mouth ulcers. I keep having them, and they are no fun.

You certainly will find many helpful, caring people here, and no other board like it.

You also will find a bunch of good info. I also depend on God or I couldn't make it, and along with my dear husband and family  this family board means everything to me.

We are also here for days that are not the best, and sometimes we even come here to rant, because we know others understand.

God Bless
susanep

[FarmMom]

Welcome to the new world, we have only just arrived also.

My 16 year old son has just been diagnosed.  Sorry but good to know there are some other guys out there he may be able to talk to.  I really enjoy your positive energy and outlook.

As a guy, I know he processes things much differently than I do, although you are a newbie too, as somewhat older than he is, if you have any insights on getting this young man to communicate what's going on, I would greatly appreciate it.

The dry mouth...Dr. had me pick up a sample of Numoisyn lozenges, son was at band camp and really too dry to blow his horn and sing, anyhow, he would dissolve one of them before practice and he said they were amazing...all the spit he needed.

We wish you well on your journey, and pray for more good days than bad.

[shawnbilton]

That's definitely the toughest part: getting a teen to communicate their real feelings of pain/questioning/fear/etc...I'm a youth pastor and lead singer for Christian band, Within The Red, and I get a chance to talk to teens and really be there for them daily...to encourage and to listen...I find it's easiest to just spend time with them, without the pressure of q & a...that's when they become more comfortable and want to confide in you and really share their struggles...we can monologue all day to them, but real dialogue is where the difference is made.  Find the exact thing he's been wanting to do (possibly something you'll have to budget and plan for, so have that lined up first of course) and just take him and go...just don't pressure him to talk, only let him know that , even if you gotta help him take the cigarettes out of his mouth, put down the bottle or pick him up from jail (im joking of course, but seriously too)...that no matter what youll be there for him and will fight every last person in the world to see his dreams come true.  Never give up...even in the midst of his struggles, God places parents there to show the right way and to help carry his burden and to always encourage him.

If I can ever help with anything, give me a shout... Email/website on my profile

-Shawn

[FarmMom]

Thanks so much.  Trying to get him to read posts and do some of his own, but so far...blood..turnip. Decided to jump ship and bring him to the beach with his cousins, he took off earlier without the eye drops or mouth lozenges, or any naproxen....because he's fine!! Trying to get him to understand he's fine, if he takes his medicine, what do you think of a sledgehammer??

[slccom]

Sure we judge! You should hear us if you have a bad doctor!

FarmMom, it takes us all a while to transition from the "I'm healthy" mindset to "I'm healthy as long as I ...." I think your son will be contacting you. And we aren't teenagers, who have little or no peer support. My heart goes out to your whole family as you make this transition. But it will happen, and if you just expect setbacks along the way they won't bother you as much.

Your son has to make his own journey in his own way.

Hugs to all, Sharon