Introduction

[Karlij]

Hi all!  I'm so happy to have found this forum.  SJS sucks, and no one understands how I can look normal but feel so sick.

I was dx in 2013.  I thought I had RA because I would wake up every AM not able to bend my fingers.  I was so tired, if I sat down at home, I was asleep.  I saw my pcp and after bloodwork, found out it was Sjogrens and not RA.  So I was referred to a Rheumy.

I feel the sjs was triggered by the weight loss surgery I had in 2008.  I suffered an esophageal tear during the procedure which went unnoticed until I developed sepsis two weeks later & nearly died.  I was in a coma in ICU on a vent for 3 weeks, then inpatient rehab for 3 more weeks bc I lost all strength and could not walk.

Since then, I have had nothing but problems.  I've had 2 major hernia repairs, as my abs are Swiss cheese thanks to the above situation.  I have severe adhesion issues.  I had a sinus infection for 8 months in 2013 that didn't stop until I had a balloon sinuplasty & rhinoplasty.  I tore my rotator cuff last spring & had to have surgery, no idea how it happened.  Tore my meniscus as well, though that
healed w/o surgery.  And this past November, I had an emergency appendectomy!

I also had 5 years of infertility until diagnosed with PCOS.  I got 2 precious kids out of 5 pregnancies.  They are 4 and 9, and the reason I fight so hard to beat this!

Thanks for listening.  I am here to learn all I can & pay it forward.

[Ashewoman]

Welcome! We're so glad you found us, too.  It's tough in the beginning trying to make sense of things. It's okay to do a little grieving for the way you expected life to be and the way it actually is.  However, I find in retrospect that people without serious illness don't always end up with exactly what they expect either.  At least, we can smirk silently to ourselves for having a good reason for thinking so... 

It sounds like you have had one heck of a recent health history.  Congrats on surviving so much.  Please don't take this the wrong way because it could sound flippant at the beginning of your journey but I promise you I don't mean it that way-- you may want to conserve your energy rather than "fight so hard to beat this" thing.  I'm not sure beating it is an option.  Although, I have learned to count my victories in new ways. In my experience, the more I kick and fight trying to win the less I actually win.  It seems like things go much smoother if I go with the flow.  I take the down days and up days like weather.  It's better to plan picnics on sunny days and choose and quieter activity for the rainy days.  So I no longer throw a fit like a two year old when "my personal weather" is rainy when I wanted sunny.  Instead I do what makes more sense when I'm having a bad sjs day. And I try not to only use my sunnier sjs days up for stuff that has to be done.  It's easy when things are piling up from a run of bad sjs "weather" to try to catch up on a good day and over do it only to be wiped out for a couple of days afterwards. Pace yourself, especially with small kids in the house.  And don't be afraid to put the rug rats to work.    You're going to need their help along the way so start when they are small so they don't even realize a change has come about.  Sometimes the sunnier day needs to be a fun day while I have the energy and wherewithal to enjoy the sunbeams or I'd never get enjoyment out of anything at all.   

Otherwise, it's a matter of adjusting my expectations (lowering my standards) and helping friends and family to do the same even though they don't usually understand why.  I told a family member just yesterday... "I can't keep your pace so if you want to do this WITH ME then please slow down." It worked.  Still having trouble believing it but that is why I say train them early on rather than trying to suck it up all by yourself for a few years before you finally lay into them one day unexpectedly.  Can't tell you how many years it's taken for me to get assertive about it or for them to let it sink in, but (start the parade music)  THAT was a victory! So I'll take the wins I can get.

Meanwhile, Welcome again to the club no one dreams of being a member of. You are in good company and we get it even if everyone doesn't so kick off your shoes, let down your hair, fling your bra across the room like a runaway sling shot, and get comfy.  This is a safe place to be your sick self. LOL Or even just yourself that is frequently sick. GG

[Joe S.]

Welcome to the forum. I hope you find some management techniques that work for you.

[Carolina]

Dearest Karlij,

Welcome, welcome, welcome.   

You are right that all that terrible stress may have triggered an earlier onset of Sjogren's.  And the inflammation which has been a major part of your life (infections the PCOS which involves many hormonal imbalances) had also caused the weaknesses in your tendons and other ligaments, and the tears in your menisci and rotator cuff. 

You have so much to deal with, Karlij, and you will find a great deal of relief, support and information here that will help you.

Check in often, share with us everything that is going on with you, your health, and the management of your life with Sjogren's and 'almost' Lupus.

Many of us have had 'botched surgeries' with terrible infections and life long damage, you will find.

And many have struggled to bear children and some have been blessed to succeed.

Again, welcome.

Hugs, Elaine

[Carebear]

Welcome,  Karlij.  So sorry to hear about your health issues of late. Hopefully you will find some useful information here, and always support and safety.

[Pisces24]

I would check you medications and see if a "reaction" listed is anything like what you have.
Ex:  I tolerate Leviquin antibiotic well but a friend of mine developed severe tendon issues which was listed as a BAD reaction to the drug. It took her a long time to get better.

Just an idea as most people do not check the side effects or allergic reactions to medications. I didn't until I got bad hives off one.  Good Luck!

[Katybarstool]

Welcome Karlij

Sounds like you have come to the right place. Looking forward to getting to know you.

Kathyx