Author Topic: Good Things About Being a Soggie  (Read 10449 times)

Pisces24

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Good Things About Being a Soggie
« 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!  ;)

olmphoto2

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Re: Good Things About Being a Soggie
« Reply #1 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
 
 
 
 
 
 
 
Mary Ann in Wisconsin

"A man will be imprisoned in a room with a door that is unlocked and opens inwards as long as it does not occur to him to pull rather than push." 
          Ludwig Wittgenstein

eyeamdry

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Re: Good Things About Being a Soggie
« Reply #2 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. 

Crymeariver

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Re: Good Things About Being a Soggie
« Reply #3 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.




gold55

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Re: Good Things About Being a Soggie
« Reply #4 on: April 14, 2012, 04:53:57 PM »
Perfect Pisces!!  You made my day!  I feel special now ;)
Dx#1:  dx changed to Sicca Syndrome + UCTD (how wonderful)
Dx#2:  Osteoarthritis and high cholesterol
Meds:  my golden retrievers, my doodle, otc tylenol, ibuprofen, mobic, vitamins, omegas, oral pilocarpine, liguid chondroiten/glucosamine with

Parched

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Re: Good Things About Being a Soggie
« Reply #5 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.

hootyhu1

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Re: Good Things About Being a Soggie
« Reply #6 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!

Sleepy In Seattle

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Re: Good Things About Being a Soggie
« Reply #7 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
Sjogren's, Lupus, Raynaud's, APS
Fatigue, Brain Fog, Autoimmune Hearing Loss, joint/muscle pain, dry mouth, clots in retina, etc
GF, "semi-Paleo" diet, Supplements, Plaquenil 400mg/day, Aspirin 325mg/day (for APS), Methotrexate 7mg/2x per week, Prednisone 3.5mg/day

susanep

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Re: Good Things About Being a Soggie
« Reply #8 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 :)
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

SueAnn

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Re: Good Things About Being a Soggie
« Reply #9 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
Sjs
LDN, Plaquenil, Evoxac, Prednisone, Restasis..
Vit B complex, calcium, Vit D
Female - 50ish

gold55

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Re: Good Things About Being a Soggie
« Reply #10 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!!!
Dx#1:  dx changed to Sicca Syndrome + UCTD (how wonderful)
Dx#2:  Osteoarthritis and high cholesterol
Meds:  my golden retrievers, my doodle, otc tylenol, ibuprofen, mobic, vitamins, omegas, oral pilocarpine, liguid chondroiten/glucosamine with

Madison Granny

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Re: Good Things About Being a Soggie
« Reply #11 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.
Primary SJS, dRTA, Osteroporis, OAB, stage 3 kidney disease, hypothyroid and high blood pressure.  Medicine I take are plaquenil, bicarb, prolia, synthroid, toprol and amolipine, citracal and vitamin D.  I use Arex and Azasite and Prolia.  I also have Reynaud's and osteoarthris of the toes

Crymeariver

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Re: Good Things About Being a Soggie
« Reply #12 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.

eye2dry

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Re: Good Things About Being a Soggie
« Reply #13 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

irish

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Re: Good Things About Being a Soggie
« Reply #14 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
« Last Edit: April 16, 2012, 09:47:49 PM by irish »