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[artsyamerican]

Welcome!

Yes, I wake up at night Sooooo dry I can't swallow or hardly breathe. For a while my whole mouth and throat would dry out then swell up at work. Couldnt talk or swallow. PANIC!!

Recently I have done better and am back at work thatnks to my PCP and a whole regimine of meds plus supplements.

Fatigue is something I can't seem to beat, but I keep trying.

Take care and keep posting.


KellyG

I know what you mean!! It is so scary to wake up that way.  I was dx with sleep apnea a few years ago but quit wearing the mask because I kept tearing it off my face in the middle of the night.  I think I just finally figured out why...because of a dry throat and coughing!  I have since started wearing it again because I know I wake up more refreshed when I breathe through the night!! Thank you for the post!

[artsyamerican]

I don't have the tongue sticking but i can't eat a sandwich without it sticking like paste all in my mouth.  I have to keep drinking to get it wet enough so I can chew it and get it down. Other regular foods are not so bad but they have more moisture in them I think.

Teachers are so active and "on the go", I can see where that is a big change for you.
Not sure if we still do but we used to have a "hotline" in town that was staffed by teachers for kids to call with homework questions. Not sure if I was paid or not. And of course we have the Sullivan's learning centers around here too. Not sure if you'd be interested in any of those.

Hopefully you can find something you enjoy that can be done in "short bursts". I am working on tracing my family tree and find that interesting. I can put as much or little time as I want.
Welcome to the Group!

Yes - I like your statement about "short bursts"  that is so true about my energy waxing and waning.  I was thinking about developing a website related to education...that I could do in spurts....I just can't make any long term (or even short term) commitments because every day is unpredictable!

[artsyamerican]

Hello Artsy,
I worked with students too and I really miss them. I was approved for disability ( and I cried, because there was no hearing? and I wondered if/is my condition worse than I thought?)  I experienced a grieving time for the lose of that part of my life.

For dry mouth I put a crock pot near my bed. I wake up and it feels like lizard tongue...lol.  Maybe while sleeping we are breathing through our mouth?
I use sugar free Ricola like lozenges and 1/2 of a stick of sugar free gum to create saliva. Your doctor can prescribe a  med for dryness.
Dry skin I use regular olive oil as a moisturizer....absorbs right into the skin and has natural antioxidants.

I am having headaches now (today is day 13) 3 advils helped, to break the pain cycle, then down to two and drinking a lot of water and gatorade. The Neurologist I saw yesterday suggested extra strength Excedrin. 

Start keeping a diary of what you are feeling, doing, etc., to learn your triggers. Include foods and what makes you feel better. If you can do it on a laptop and then condense it for your Dr. it will help.

Try to stay on your old work schedule (if you need a nap take one...but be careful not to interrupt a normal sleep cycle...it is really hard to correct) Even though we are supposed to stay out of the sun. It is important to "shake your booty" and get some fresh air and exercise. A walk according to your ability is good.  Pick a day to go to the library and try to go the same day every week (some have yoga classes, knitting, reading groups). It is very easy and I think normal to isolate when  not feeling well, and that becomes a depressing rut.

That is so funny you should say that about being approved for disability...made you feel worse because you didn't have to put up the routine fight! I currently have private disability but was told to file for Social Security.  I was thinking if they approve me right off the bat...will I be happy or scared?! LOL

[soycoffee]

Artsy American, if you are approved for disability right away, you will have been an excellent advocate for yourself (without a hearing) -- continue on that track!
Soycoffee

[Joe S.]

I am wondering how many of us were teachers?

[MiJoy]

Hi ArtsyAmerican, and Welcome! I joined this board a little over a year ago & it has been the best source of information, support, advice, encouragement, kindness & caring.
I am also a teacher and truly love my job. This time last year I wasn't sure if I would be able to continue. Since beginning Plaquenil & Evoxac in April, I am doing MUCH better.
I still struggle with fatigue, joint pain, dryness, & other SJS issues, but not nearly as debilitating as they were before meds, & I am learning better & better how to deal with the issues I do have. I rest a LOT when I get home every afternoon, & more rest on the weekends.
Before starting Evoxac, my dentist ordered some lozenges for dry mouth. These were really helpful while teaching. I also keep a large water bottle with me everywhere I go, and carry chewing gum & Crystal Light hard candies that help when in the car or in a building with very dry air.
I also have sleep apnea, but use a cool mist humidifier which helps a lot. I also just recently started wearing an eye mask that is helping my eyes at night. The CPAP was blowing air into my eyes, not good.
Search this site for all kinds of information. There was a wonderful thread I think about a year ago about things we keep on our nightstand. I learned lots of good info. from reading that thread.

I'm so glad you found this board. In addition to the support, encouragement, and advice I get from my own posts, I gain strength just from reading what others go through and how they cope. There are some beautiful people on here!

Blessings and hugs,
Joy

[Carolina]

Welcome Artsy,

This is the place for you.

Joe, when I retired, I was a college professor starting up and running a school of business for my university in a second location.

They hired four people to replace me.   Yep.

It was rewarding and challenging, and I loved both the teaching and the recruitment and organizing of the program.

But once I was diagnosed with my Coronary Artery Disease with the angioplasties and stents, I realized that I wanted more time to spend with my grandchildren, and more energy to live in my community, and do volunteer work, make friends, etc.

It is hard to change what we do, "something's lost but something's gained in living every day." Joni Mitchell.

Welcome again Artsy.

Hugs

Elaine

[mshistory]

I am wondering how many of us were teachers?

I'm still a college instructor - it does seem to be a common profession here 

[irish]

Here is something that I do for the throat dryness. I use the Biotene oral gel that comes in a tube. It is supposed to be for the mouth dryness, but I get the horribly dry throat that is so painful that I can hardly swallow. I use a little bit of the oral gel and mush it around in my mouth and then swallow it. This coats my throat and it relieves the oral and throat dryness at the same time. The gel is water based, but I wonder if that would help a little bit with the night time dryness for you.

We don't swallow as much at night so if there is some in the mouth and throat is may coat enough to keep things a little moist. Good luck. Irish

[Narablueeyes]

Welcome artsy!  Not so much dry mouth as much as dry throat.  I keep a glass of water or tea by my bed.  I figure once I go through an entire glass throughout the night, I'll switch to the gel.

[sunkissed64]

My mouth and lips are super dry. I have lip balms all over my house and car it feels like I'm constantly putting it on. Water bottles are also everywhere including my car. This disease has ruined my mouth as far as my teeth go. I have a mouth full of temporary crowns because at $1000 a porcelain crown I can't afford it. You would think since it's from a medical condition that someone would cut us a break insurance wise. I am also very hoarse a lot of the time and have issues swallowing on occasion. UGH.

[divingdancer]

I know what you mean!! It is so scary to wake up that way.  I was dx with sleep apnea a few years ago but quit wearing the mask because I kept tearing it off my face in the middle of the night.  I think I just finally figured out why...because of a dry throat and coughing!  I have since started wearing it again because I know I wake up more refreshed when I breathe through the night!! Thank you for the post!
[/quote]

See your sleep apnea doc as you can get humidifiers to go with the CPAPs. My ex hubby used to work for ResMed so I know they supply them.

[Patze]

Like Divingdancer, I have a humidifier on my CPAP and boy it sure gets a good work out every night!


Patze

[Narablueeyes]

I have a humidifier on mine too.  It really does help a lot.

[MiJoy]

Like Divingdancer, I have a humidifier on my CPAP and boy it sure gets a good work out every night!


Patze,

I have a humidifier on my CPAP also, but have a terrible time with water in the tube when I turn up the humidity level the slightest bit.
A nurse told me to insulate the tube, so I made a cozy cover for it with several layers of flannel wrapped around cotton batting.
The tube still gets water in it if I turn up the humidity, then it wakes me up with noise of the water & with water dripping down onto my face.
How do you keep this from happening?

Thanks =)
Joy