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Sjogrens Topics => Living Life In Spite of Sjogren's => Topic started by: Pisces24 on April 14, 2012, 02:07:18 PM

Title: Good Things About Being a Soggie
Post by: Pisces24 on April 14, 2012, 02:07:18 PM
Not feeling good today and tired and irratable.

I got to thinking about Good Things about having SJS. 
Yes there some. See if you can add to them.

1) I won't embarrass anyone crying because I don't have any tears
2) I am generally too tired to pick a fight or argue with you
3) I feel smart educating drs and others about SJS. There has to be part of a PhD there.
4) I can't spit out or on anything - no saliva
5) I read food labels now and watch what is going IN my body
6) I am interesting to every dr I meet
7) I get to help people and tell them about this website. Met a nurse who has a relative just diagnosed lately with SJS
8 ) At times I feel that I am single-handidly keeping a company in business: dry skin loation, probiotics, meds, etc. etc.  I am stimulating the economy!  ;)
Title: Re: Good Things About Being a Soggie
Post by: olmphoto2 on April 14, 2012, 02:43:51 PM
I don't drool on my pillow. (And if I have a stroke at some point, might avoid that embrassing drooling too!)
 
I always look mysterious in my oversize, wrap around glasses and longer sleeves to protect against the sun.  "I vant to be alone, darling."
 
People get to practice dealing with their adrenaline rushes when they think they might have to use the Hemlich menuver on me and I work through the problem in the nick of time. :D
 
 
 
 
 
 
 
Title: Re: Good Things About Being a Soggie
Post by: eyeamdry on April 14, 2012, 02:54:19 PM
Any new nurses or doctors I see now, I ask them if they know what "Sjogrens" is.  If they say no, I give them a lesson.  If they say yes, I give them a verbal test.  I was having mammograms the other day and the subject of my meds came up and I made the nurse take the lesson, even though her contact with me had nothing to do with Sjogrens. 

I went to ER a few weeks back after being dizzy and I asked each tech, clerk, dr, nurse I saw if they knew what Sjogrens was.  They did when I left.  I made sure they knew how to spell it. 
Title: Re: Good Things About Being a Soggie
Post by: Crymeariver on April 14, 2012, 04:45:29 PM
I was in the eye center for a biopsy yesterday and the surgical nurse prepping me  was going through my medical history and listing my diseases, "hypothyroid, lymphoma, and something I've never heard of ... sojornerns".  Then the anesthesiologist came in and said the same thing.  I just did a mental head shake. The anesthesiologist rotates through the hospital and isn't specialized but the EYE nurse not knowing??  I corrected the anesthesiologist ... who was years younger than me... and he seemed taken aback.  I usually try not to insult people who are about the have my life in their hands.



Title: Re: Good Things About Being a Soggie
Post by: gold55 on April 14, 2012, 04:53:57 PM
Perfect Pisces!!  You made my day!  I feel special now ;)
Title: Re: Good Things About Being a Soggie
Post by: Parched on April 14, 2012, 05:43:54 PM
I hardly ever go shopping, so I save a lot of money.  My hubby likes this!!

His favorite thing about Sjogrens, I don't talk much any longer.   He is a quiet person and I use to be a chatter box.
Title: Re: Good Things About Being a Soggie
Post by: hootyhu1 on April 14, 2012, 07:37:14 PM
I am more knowledgeable on Sjs than the Docs I work for. If we have any patients that have questions on Sjs or the risks of plaq. they send them to me!
Title: Re: Good Things About Being a Soggie
Post by: Sleepy In Seattle on April 14, 2012, 09:04:54 PM
I am taking much better care of myself, my teeth, my nutrition, etc.

Now I have an official diagnosis, my family doesn't think I am nuts anymore (well, not AS nuts, LOL...)

I don't feel guilty about falling asleep at 8:30pm anymore.

I have discovered all sorts of helpful stuff like Xylitol lozenges, alcohol-free mouthwash, etc....and yes, I am definitely stimulating the economy too!!! :-P
Title: Re: Good Things About Being a Soggie
Post by: susanep on April 15, 2012, 12:04:27 AM
I now enjoy the simple, beautiful things of life. I also now take keeping stress down seriously. I laugh a lot more, and actually laugh at most things. I have learned as much as possible for where I am now, to not judge others, because I don't know what they are going through. I no longer feel lazy or guilty for taking a nap.

susanep :)
Title: Re: Good Things About Being a Soggie
Post by: SueAnn on April 15, 2012, 03:47:39 AM
I don't feel like going anywhere anymore which makes my husband happy as he never wanted to go anywhere in the first place. ::).

SueAnn
Title: Re: Good Things About Being a Soggie
Post by: gold55 on April 15, 2012, 05:37:34 AM
you guys and your husbands!!!  ROFL....sounds so much like mine.....none of them are unique, are they? 
my husband LOVES that I don't talk as much!  he doesn't like going a lot of places either so he's content when I'm feeling under the weather!  Bless 'em.....can't live with 'em or without 'em!!!
Title: Re: Good Things About Being a Soggie
Post by: Madison Granny on April 15, 2012, 08:05:22 AM
I like being about to educate doctors and nurses about SJS.  Sometimes I wonder what they taught them is school.  My dentist even knows more about SJS than a lot of doctors and nurses do.  I'm his only patient and first patient with SJS and he has even searched the internet about SJS                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                   My husband likes it that I don't want to go shopping anymore.  Even going to Wal-Mart and the grocery store is a chore.  But I've found another way to shop.  It's on the TV.  You can get most anything there.
Title: Re: Good Things About Being a Soggie
Post by: Crymeariver on April 15, 2012, 10:36:22 AM
It took awhile to come up with but:

I am warmer since gaining weight on Prednisone and I suffer less during the winter months.  We've been able to save on the heating bill.
Title: Re: Good Things About Being a Soggie
Post by: eye2dry on April 15, 2012, 03:51:18 PM
I am myterious as well.

Today oversized wrap around sunglasses, clothed from head to toe and a huge straw hat with a very wide brim and to top it  off garden gloves.

No one really "saw me", they saw clothes .

eye2dry
Title: Re: Good Things About Being a Soggie
Post by: irish on April 15, 2012, 10:03:12 PM
You gals and your husbands. They must be all made from the same mold. Mine doesn't like to go anywhere either. I would like to go more but neither one of us can take much anymore.

Also, I love to shop and go when I can. When I am dead then I won't. That's what electric carts are for.

My biggest problem since I was sick (past 20 years) is that people see me on the street and say "oh, I didn't know you were back in town". I smile and say "we moved back in 1990". You should see the look on their faces. I know that some of them thought that I was dead. I smile again and just tell them that I have a lot of health problems and can't go out much. If they ask I tell them more, otherwise who cares!!! If they thought I was dead they probably didn't care anyway.

The good thing about having Sjogrens is that I have a lot of good friends amongst the staff at my doctors offices. The bad thing is that I only see them when I am sick. Irish ;D
Title: Re: Good Things About Being a Soggie
Post by: smallfry on April 15, 2012, 10:23:18 PM
I didn't realise that there are so many positives to having Sjogrens ;D LOL


Thankyou

Cheryl

Title: Re: Good Things About Being a Soggie
Post by: Gayle on April 16, 2012, 02:05:39 PM
and the best for me is I have a great, built in excuse to not do one darn thing I don't want to do... Makes saying no much easier and accepted. I love all these answers... apparently most men came from same mold... :)
Title: Re: Good Things About Being a Soggie
Post by: Daisy1234 on April 16, 2012, 03:47:35 PM
One good thing that I can add is that my sense of smell and taste have been greatly diminshed by the Sjogren's. 

The subsequent advantage is that I don't mind my husband's cooking as much as I originally did and the other advantage is that I have a really farty english bulldog as my companion and my nose doesn't mind that either haha.  :)

Daisy

(Still alive and kickin)
Title: Re: Good Things About Being a Soggie
Post by: Gayle on April 16, 2012, 05:44:02 PM
Oh Daisy, you are a hoot! I have two Bostons with the same...er... issue!
Title: Re: Good Things About Being a Soggie
Post by: irish on April 16, 2012, 09:49:54 PM
Daisy, Your farty bulldog has to be the best thing about sjogrens on this post!!!Hugs Irish ;D
Title: Re: Good Things About Being a Soggie
Post by: gold55 on April 17, 2012, 06:47:07 AM
I LOVE bulldogs no matter what they do!!!  My big boy golden burps and the smell is often worse then what comes from the other end!!  Either way ;D I keep a jar of "stop gas" pills and they seem to work temporarily! 
We should change the heading to "Good Things About Being a Soggie when you Own a Stinky Dog"!
Title: Re: Good Things About Being a Soggie
Post by: MissyLouWho? on April 17, 2012, 07:11:34 AM
This is an AWESOME thread!!!! 

I envy all of you with your broken sniffers ;D.  My labrador retriever farts all night long and it smells like a skunk and of course he has to sleep right next to my side of the bed  ::).  I spend a lot of time hiding under the blankets at night  :P

The best part of being a sjoggie for me has to be how much closer it has brought me and my husband.  For a long time we had been living almost separate lives in the same house.  Very much in love, but not really doing anything together.  He took care of paying the bills and all paperwork related stuff and ran around all day doing his mayor stuff.  I stayed home and raised the kids, cooked and cleaned.  I went to work 2 years ago and he had to stay home with the kids which kind of 'broke him in' to taking care of the house.  Then I got sick suddenly and it's all fallen on him.  At first he didn't understand and even thought I just didn't like working and 'came up with sickness' to avoid working.  Now he understands and is my advocate  :).  We had a heart to heart last night and I swear we are even closer than I thought possible.  For the first time in a long time, I felt like he was there for ME and my needs completely.  So, THANK YOU autoimmune diseases!
Title: Re: Good Things About Being a Soggie
Post by: Cricket on April 17, 2012, 09:59:25 AM
I forget everything, nothing sticks!

 My daughter asked me the other day if I would NOT tell someone something and I told her her secrets were safe with me cause I already forgot it!  So I guess I won't get in as much trouble any more for letting things slip! Lol!

Great thread! :) ;D
Title: Re: Good Things About Being a Soggie
Post by: A66eyroad on April 17, 2012, 10:15:21 AM
This is fun!  :)

I have a friend who told me the other day that he loves telling me jokes, because he can tell me the same one over and over and I laugh as though I've never heard it before.

(That's because I don't remember having heard it before!!!)
Title: Re: Good Things About Being a Soggie
Post by: Gayle on April 17, 2012, 11:34:12 AM
all are great! Keep going! I meet the same people over and over... keep forgetting I met them to start with.. introduce myself again. Can only laugh!
Title: Re: Good Things About Being a Soggie
Post by: Sleepy In Seattle on April 17, 2012, 03:29:02 PM
People think I am really strong because I never cry.... ::)
Title: Re: Good Things About Being a Soggie
Post by: SueAnn on April 17, 2012, 05:32:39 PM
My students get a big kick out of correcting me at school; which makes them feel really good and builds their self esteem.  Hey whats a guidance counselor for if not to build self esteem and make students feel good.

SueAnn
Title: Re: Good Things About Being a Soggie
Post by: Meld256 on April 17, 2012, 07:02:00 PM
Pisces,

Thank you for starting such a postive topic. :)  And what's turned out to be a funny and honest account of so much we go through. 

Daisy and your farty bulldog; the stinky=breathed golden retrievers, and all the rest.  There are definitely some positives in with all the not-so-positives we endure! 

I believe going through this has taught me humility and how to not judge others as I might have done previously.  I have such a better understanding of everyone with chronic health issues.

My husband and I have also become closer.  We had a few challenging months when I was depressed and ill and not sure what my life would be in the future, but after 2 years we have a better understanding of each other.  He's also my biggest advocate. :)
Title: Re: Good Things About Being a Soggie
Post by: Patze on April 17, 2012, 07:23:41 PM
The good thing about SJS is that the doctors take me seriously; I don't get the  "just a middle aged lady with some random symptoms" routine  ::) - y'all know what I mean. 

I do like most of the staffs as they are some great ladies that never let me stay "miserable" for long (no matter how awful I may feel).



Patze
Title: Re: Good Things About Being a Soggie
Post by: gold55 on April 17, 2012, 09:25:37 PM
This thread is pretty hilarious!  It is nice to hear Sjoggies getting closer to their Mr. Sjoggies!  I think me and Mr. SJS have done more serious talking since my diagnosis although he still thinks they made a mistake in my blood tests (2x ROFL....this screams denial of a Sjoggie mate!!)

I do like how people confide in me all the time.....and when they ask me to promise to not tell anyone I always promise cuz I know I'm going to forget what they tell me soon after!!!!  Having SJS has made me everyone's best friend and confidant....LOL.....I love it!!!  I hope I can retire at my current job because my memory would never get me hired at a new place...in fact I'd probably be applying at the same place over and over!   
Title: Re: Good Things About Being a Soggie
Post by: MissyLouWho? on April 18, 2012, 06:55:14 AM
I thought of more.  I really like thinking positive about this stuff!

1. Since I have been losing so much hair, it doesn't take so long to straighten it because half of it fell out already!  Plus, I usually get help from my hubby and oldest daughter because my arms get tired too fast, so it's like having beauticians come to me every few days  8)

2. My kids love it because I forget when I grounded them and they get off punishment early, and they like to tell me I told them they could do something because they know I won't remember if I did or didn't say it.  So that's a positive for THEM,  ;D

3.  Without this awful disease, I never would have met all of you.  And all of you are what have helped me get a handle on this thing and I forever will be thankful for the awfulness that brought us all together (((hugs and love to you all)))
Title: Re: Good Things About Being a Soggie
Post by: Meld256 on April 18, 2012, 07:22:39 AM
MissyLouWho?

Those are some good ones!

I must agree this forum has been one of the very best benefits of dealing with all of this.  I have made friendships and received so much encouragement and acceptance; I could never express my gratitude enough. :)

Melinda 

Title: Re: Good Things About Being a Soggie
Post by: gold55 on April 19, 2012, 09:02:04 PM
I love being called "a Sjoggie".  My dog's name is Logie and he's got dry eyes and bad hips so I pretend that he has Sjogrens and I give him artificial tear drops, massages and chondroiton/glucosamine for his hips....no plaquenil of course!  He loves the attention and then I don't feel like the only one in the house with SJS!  He also likes being called Sjoggie Logie!
Yes, this disease has caused me to revert back to being a 10 year old child playing imaginative characters with my dogs!!   
Title: Re: Good Things About Being a Soggie
Post by: irish on April 19, 2012, 10:51:09 PM
gold, At least you still are able to realize that it is just "pretend". lol IRish ;D
Title: Re: Good Things About Being a Soggie
Post by: gold55 on April 20, 2012, 06:41:05 AM
ohhhh I don't know about that Ms. Irish!!!!!!  I look forward to weekends when we can nap and snuggle together....me and Sjoggie Logie.   When I get home each day I ask him about his symptoms and how he's feeling......I give him a mini exam......then I tell him about how I'm feeling.....we seem to have extra dry eyes on the same days when the humidity is down (his eyes weep when it's dry).....you probably wondered if he told me that they hurt or sting....LOL!!
 
All I can say is that my husband makes "no comments" about the relationship between me and Sjoggie Logie.  If Logie is in the bed first snuggling with Mom then there is no room for hubby and he has to sleep in the daybed!  My hubby figures.....if it works and it's not medicine then keep doing it!!   
Title: Re: Good Things About Being a Soggie
Post by: Patze on April 21, 2012, 02:39:10 PM
That is good Gold5!  Hubby's in the daybed! :D


Patze
Title: Re: Good Things About Being a Soggie
Post by: gold55 on April 21, 2012, 05:16:57 PM
Yep Patze....after almost 30 years together I'm sure he likes "the break" from me!!!!!
Actually he's so easy going he'd sleep on the floor if I wanted to snuggle with my three goldens ;)
I love my husband but I think in my second life I will marry my dog ;D
Title: Re: Good Things About Being a Soggie
Post by: gold55 on April 22, 2012, 10:27:34 AM
Jenny just posted a link about coffee stimulating our glands!!  Yippee, the caffeine is now a good thing!!  I love the smell and taste of coffee but was avoiding it due to dryness.  I think it does stimulate the glands in many people!!  Who knows what they'll approve of next.....whiskey....tequila....white russians.....Baileys!!!  Love it!!
Title: Re: Good Things About Being a Soggie
Post by: Patze on April 22, 2012, 04:09:11 PM
I wish caffeine would stimulate my glands, but alas, it is not to be.  Oh, if you hear about any kind of whiskey/liquor stimulating the glands, by all means do post! ;) :D



Patze
Title: Re: Good Things About Being a Soggie
Post by: Gayle on April 23, 2012, 05:22:30 AM
Hi Patze

No harm in pretending!  :-*
Title: Re: Good Things About Being a Soggie
Post by: soycoffee on April 23, 2012, 08:14:22 AM
People think I am really strong because I never cry.... ::)
I, too, think I am really strong because I never cry.

Soycoffee
Title: Re: Good Things About Being a Soggie
Post by: WildThing on April 28, 2012, 10:30:42 PM
I can sleep all day and not get accused of being lazy.

My boobs are grwing and it seems is soggie thing as  alot of other women on here have the same issue which is good for Joe coz he's surrounded by well endowed women. (credit goes to Gold for that)
Title: Re: Good Things About Being a Soggie
Post by: MissyLouWho? on October 07, 2012, 05:52:40 AM
I thought of another great reason for being a sjoggie and thought a bump in the thread for newbies couldn't hurt either  ;)

I read a lot.  Now with my Sjoggie memory, I can reread books as if I never read them in the first place!  Saves a lot of money  :P.  I've done this with several books just recently that I read about 6 months ago.  The same goes for movies but not as good as for books!

Title: Re: Good Things About Being a Soggie
Post by: iraisin on October 07, 2012, 07:05:11 AM
I'm more understanding to others with problems.

And I don't waste my time on those who don't love so well.

I'm wiser about myself and consider myself more.

AND, I'm really glad to see Daisy1234 post again! Missed you, lady. Glad you're well.
Title: Re: Good Things About Being a Soggie
Post by: madderakka on October 09, 2012, 11:32:35 AM
I always get compliments from my doctors when they ask how much water I drink since I tell them that I drink water all day.

I have a medical excuse to chew gum even where others aren't allowed to!
Title: Re: Good Things About Being a Soggie
Post by: SjoDry on October 11, 2012, 09:48:00 AM


Less perspiration  ;) (This positive attribute impacts multiple body parts & clothing )
My knowledge of medical terminology & AI diseases present like a medical professional.
I get to buy expensive shoes for my incredibly painful feet.
I get to beg-out on the exercise regimen that my husband & I committed to do together.
My "I'm too fatigued to care" attitude allows me to worry less. (this includes house presentation for company; always putting myself together in fashionable clothing; cooking thoughtful meals, etc.)
My morning beauty regimen has been drastically reduced due to painful everything.
When I feel down, I can rationalize my chocolate intake ...okay I am a Master at this even w/o a medical condition)
I can prop up in my bed with pillows & watch Lifetime Movies (or other coveted reality tv) and not feel guilt
I can easily purge the unsupportive people from my life
I have clearer vision when it comes to prioritizing my life and the people & things in it
Figuratively speaking, I can kick a bad physician to the curb quicker than you can say, autoimmune disease blows.
I can advocate for myself like a rock star
I can sometimes laugh and make jokes about the ugly bunions; nodules & drifting digits I am developing
I can embrace my whiny verbal complaints guilt-free, without feeling like I've earned a DSM IV diagnosis

Okay..okay I could just go on & on with all of the Sjoggie "positives" . Suffice it to say..that in spite of their presentation, there are
a few positives that we can all find if we look hard enough.

SjoDry  ;D








Title: Re: Good Things About Being a Soggie
Post by: madderakka on October 11, 2012, 07:26:51 PM
How on earth do you get less perspiration? I am always sweating! I think it's the one thing on my body that works. Now you can add that I am totally jealous of you to your list of positives.  :D
Title: Re: Good Things About Being a Soggie
Post by: Lspeed1983 on October 16, 2012, 07:48:22 PM
Forces me to plan my days, vacations, and really my whole life more carefully. Slowing down and planning each day has been an unexpected perk of SjS! 

Also made me waaaaaay more sympathetic.  I use to think peps with these types of disorders were playing the system.  Wow Karma reached out and slapped me right in the face.
Title: Re: Good Things About Being a Soggie
Post by: shellthebell on October 23, 2012, 02:28:36 PM

Having Sjogren's makes me count my blessings. I am now thankful for everyday I get to take a walk, play with my grandchildren, travel with my husband, clean my house, water the plants, gather the eggs, cook dinner and do all the other things other folks take for granted.

It is also good that when I don't do those things, and have to nap in the middle of the day instead, I have a  good reason. That's nice too!
Title: Re: Good Things About Being a Soggie
Post by: LittleBlue on October 29, 2012, 06:44:49 PM
It's handy at Halloween time, the dry husk like skin, parched and scabby looking mouth, and red-ringed eyes is a good basis to a bandaged mummy costume :o

You find your not so objectional to your dogs licking your face anymore. Well you have to get moisture from somewhere. Ditto someone spitting on you whilst they are talking. (just kidding)  ::)