Rheumy appointment.(Losing strength to keep fighting.)

[Joe S.]

Shani, I do not know about Sjogren's but with Fibro they say it takes 5-7 years to find what forms of management work for you. I have the feeling that this is also the case for other AI diseases. Finding what works for you is often something the doctors can not help you with.

The spoon theory helped me understand good and bad days and ways to manage both of them. There are exercises that can help with the muscle pain. Naturals that can help with arthritis. My two favorite supplements ALA, & ALC. Inositol to remove the effects of weather on my pain levels. I know that you are just 17 and I am sorry that you have to deal with this. Reiki helps with dry mouth and dry eyes. The scarf over my head helps with the over night dry mouth. Tonations can change your life if you use them. I will stop now.

[Suzie]

Shani,

Hugs and hugs and hugs to you.
I'm in a flare right now, feeling sorry for myself and out of patience with it all. It's so BLAH! And unfair. And boring. And annoying and seemingly endless.

Praying for answers for you, and soon!

Suzie

[littleme]

Shani,

I am kind of late getting onto this, but I was just so sad to read your post.  All of your posts are so positive and so mature.  You have had to deal with way more than any young woman should have to.  I am so glad you are being honest with mom...you need someone around you to really know what you are feeling and thinking. I hope this specialty place will help. You are in my thoughts sweetie!  Gentle hugs to you!

[flutterfly]

hey perty pixie sis of mine!

fair warnin'...i have my camera in my pocket!!! 

but i'll do ya a solid & give ya a few more days of the blahs...
BUT then...ALL BETS ARE OFF!!!

(i'd comb ur hair @ least!) 

u know the rules!

(stop smirkin'...I MEAN IT!)
no givin' the finner either!

luva ya!

~*flutterfly...hopin' i don't gotta take pics of a sad grumpy pixie!*~

[Shani]

Thank you for your kind responses everyone.
I'm sorry if I'm a bit late in responding but I haven't been able to get on my laptop recently.

E-mom and Pixie sis, I love you both bunches!
Thank you for being there for me.

Joe, thank you.
And 5-7 years?
That's a long time.
+I love your hints and tips, I find many of them work for me aswell.
Especially the scarf ofver your head one.
Helps a lot with jaw pain, parotid gland pain and dry mouth.

Littleme.
Bless your heart, you're an angel sent from heaven.
Your post made me smile when I was reading it.

Suzie, gentle hugs to you.
I'm sorry you feel so icky aswell.
But we can stick together and we'll get through this.
Hug!

[flutterfly]

 dear1 of mine...

u are SOOOOOOO luved by 1 far away pixie sis!!!  i'm so UBER SORRY ur goin' through all this chaos!

just know thatcha mean the world ta me & are as important ta this world as the sun※moon※ & ※stars※!!!

u hang in there luv!

'CAUSE I SAID SO!!!

i miss u terr~bly & luva u even MORE! 

(i sent this ta ya but not sure if ur usin' ur phone as of late!)   

~*flutterfly...really hopin' 4 sum relief 4 dear sweet pixie sis!*~:-*

[brownskin510]

Shani, I have been reading your post, and can tell that the tone is changing. You are too young and have so much more life ahead of you. Look at it this way, most of us, if not all of us, are way older than you, and while it does get SUPER tough to deal with the MANY facets of AI diseases, we all get through it, and so can you. Don't EVER give up because you have an entire future ahead of you. Whatever you do, no matter how little you're able to do, always put your best foot forward and give it only what you are capable of giving it, even if that's just 5 minutes of effort. Remember, you have nothing to prove. And like FlutterFly said, you are going to have to stop putting on the fronts [fake smiles]. I used to do that, also, but quickly learned that doing that, in combination with the fact that most of us "don't look sick" was a bad combo when visiting the dr. Babygirl, I HATE to hear you feeling so sad, because at this age, you should definitely be enjoying life. But looking on the positive side, at 17 [soon], you are making a lot of incredibly wise friends, which gives you an edge on all of the other 17 yr olds  .

Keep your head up, and just know that you have others to talk/vent to who understand EXACTLY what you are going thru, and know that it IS NOT all in your head, except for maybe the brain fog that comes with the AI  .

Big HUG & 

[flutterfly]

 very well said kelly!!!

now ※bright^eyes※...u LISTEN ta 'er...'cause u say that u find urself sayin'...what would ur pixie sis say...well...i say LISTEN TA THE PERTY BROWN^SKINNED KELLY!

(u are very perty kell) 

now back ta the issue @ hand...
oh thats right...pixie kisses & many warm healin' thoughts & fluffin' pillow & heatin'up h2o bottle...& gettin sum pixie sticks ta make our tongues BLUE & movin'leroy so i can show ya the soft hoody i broughtcha?!

~*flutterfly...flitten 'round ta see if there's anythin' else sis needs!*~:-*

[Shani]

Aww Kelly, bless you girl.
Reading your post made me feel a lot better.
You're absoulutely right about many things.

It just can be very frustratin thinking of the future sometimes, or even quite upsetting.
Those AI diseases already know how to keep many of us surprised day by day.
Then to think of how I'm 17 only and some others might be only in the twenties aswell.
It's quite scary to think of how you'd look or how limited you could be when you are in the 60's-70's.

I know it sounds a bit ridonkulous(Love that word. ), as no one can predict the future or when they die etc.
Just sometimes you think about such things  and I guess drive yourself even more nutty/frightnen yourself.
It's just a moment of weakness, when things tend to get a bit too much at the same time.

Although I have spent many of my time the past two years inside the the house/in bed.-
While I should have been outside with my girl friends and have fun, be worryless and so on.
I don't reget it, because it has made me the person I am today.
Not to mention that I made a lot of mature and wise friends, from all over the world.
That's one of the things that keeps me going, besides my religion and my family in real life.


Thank you SparklyEyes.
I'll try to rub everything that Kelly said, in my pixie head.
Especially the part about quitting to put a fake smile on when you actually feel miserable/poorly.
If I do it again on friday....-
Then you'll have to come fly over here and pat my pixie butt!
Or wiggle the finger at me.
But while you're here we might aswell go and flutter around.
Love you!
Big smooches and huggles.

[brownskin510]

Very Good Shani!!! I am soooo happy that you are looking at the bright side of "our" situation.  And you betta believe, if you start slipp'n, me and FlutterFly will be on that tail   

Awww, thank you flutterFly 

[flutterfly]

 perty pixie sis...4 right now i will just pat ur back & say...u are so brave & wise & don't deserve not 1 daugumn thin' u are dealin' w/!  

now luv...that said u ARE dealin' w/it the only way u know how...&

WE UNDERSTAND! but we will NOT letcha be in the dark abyss ALONE!
 
just try & let us be there 4 ya...OKAY! (through the good the bad the ugly) thats what fam※damly is 4 don'tcha know!!!  
(i'm so scared when i don't hear from ya!!!) hey is there anyway u can instruct that mama of urs how ta drop me a line? that way u can lemme know if there's days u are →REFLECTIN'← & such!

~*flutterfly...gettin' ready ta ※PAT※ thumbwhere ELSE!*~ 

KELLY~ur welcome luv! just statin' the obvious!  tehehe!  & yeh i might need help keepin' 'er ↑UP^RIGHT↑

[Shani]

*Smiles to Kelly. *
Hugs![/b]

Aww, I love ya Pixie Sis.
Same here, I'm always here for you.
I'll instruct mom on how to let you know whenever I can't get on the lappy.
You can aswell talk to her then whenever you'd like.

Thank you for sharing that Lizzy!
Very touching story. <3

[Sha]

My sweet shani!!

hope today is finding you at least a lil less pain!! if it was a perfect world, I would ask for painfree....we know it isn't so just askin for a lil more relief for ya, so maybe it will be granted!!

I hope you are listening to flutterfly, Kelly and Lizzy and all the rest...I hate stiff upper lips...the lower soft ones  don't get noticed when ya are as sick as we are, but look "HEALTHY!!"

Love ya !!

emommy sending ya those kisses through the air to land on your forehead!!

[irish]

shani, I am really sorry that you are suffering so much and I wish the docs could get you straightened out. They may have to start you on the DMARDS to get the inflammatory processes calmed down. I am sure that they would rather not do it yet but sometimes they just need to do it and get it over with.

I would cry whenever you need to and let the docs know how miserable you are. They need to know how much pain you have. I know we all like to be stoic and make it through, but sometimes the docs need to really see us as we are.

I am also wondering if you have tried a rice pack?? You can make them out of mens stockings or out of some heavier material and fill them with rice. Do not get them too full or rice though. If they get too full they have more trouble heating up in the middle or they can be more hot than we think and burn us.

Just make sure that they are sewed so that they don't break or leak. May need to use a couple of layers of material. Heat up in the microwave and place on the part that hurts the most. I will lay mine in my lap many times and it warms up my whole body. For some reason no matter how terrible I feel, the heat seems to bring comfort. It doesn't make the pain go away, but it brings it down a notch or so. I swear the heat changes pain receptors to make us more comfortable.

I have forgotten about my rice pack at times and will find myself sitting in my recliner day after day feeling miserable. The I will remember the rice pack and it is like welcoming back an old friend.

There may be someone on here who has the "recipe" for making a rice bag. I can't remember the instructions. IRish

[flutterfly]

MY PIXIE SIS...

yay...i would luv ta hear from the mama!!! (since i already feel like i know 'er)!   

yeh hon it would be uber cool 'specially if ya end up in hospital or sumthin'!!!

i find myself worryin' if a day goes by & ur nowhere on boards i know it's 'cause of ur health...
but truth be known... THATS WHAT SCARES ME!!!  know what i mean sweets!!!

& i could let all these other worried folks know how ya are doin'! @ least the cliffnoted version!!!   

i luva u those uber goobers!!!

~*flutterfly still doin' u that solid & NOT bringin' out the camera w/the zoom lens!!!!   *~