WOO HOO! We're rocking!
We are growing and gaining strength!
Thank you all for helping to revive this most important group! Every member, every posted discussion, every response, every bit of information that we share is so vital to our mission of remission, of a real cure!
We're on the way! Everyone jump in and post a discussion, share your experiences, and get your Doctor's attention for some action!
Your posts about the delays in the getting a dx and underestimating the impact of this illness were so incredibly spot on that it got my attention. I’m actively suffering with so many ailments these last ten to 14 days and I see that there is a likely SjS connection. I’m trying to gather information and strength. Right now,I’m going to multiple doctors, resting in between and coming here. This is not my normal life. Please tell me it gets better.
Yes, it gets better, Nomad! I'm in the same boat, girlfriend! Quite a few of us are! I'm telling you, it HAS to get better!
Please feel at home to post, this site belongs to ALL of us! Thanks for all of your contributions!
Sending a hug and wishing you well,
SK
Hello Nomad!
I am so sorry you are struggling so much right now. I say right now because it does get better! I am just tentatively coming out of the worst flare I've ever had. There were definite moments when I wasn't sure that things would get better this time; but it did. It will for you too. Just keep plowing through each day. Try to find one good thing that happens each, one thing that can coax a smile or laugh from you and focus all your thoughts on that one thing. Many times for me it was on the site. I often didn't feel well enough to type (secondary RA) but just reading some of the posts made me feel less alone. That's the great thing about this site, no matter what time of day, there is always someone here for you and better yet, they get it!
I wish you the best of luck with your doctors. It took quite awhile for me but I now have a team of 4 who help me. And you are right, this is absolutely not a normal life but it is, sometimes, a Sjorgren's life. You will get used to it and can even thrive in it and there is always someone here to help you do that. :)
Take care. I wish you hope, strength, and resolution, Nomad. Please let me how things work out for you. I care.
Bels
Nomad said:
Your posts about the delays in the getting a dx and underestimating the impact of this illness were so incredibly spot on that it got my attention. I'm actively suffering with so many ailments these last ten to 14 days and I see that there is a likely SjS connection. I'm trying to gather information and strength. Right now,I'm going to multiple doctors, resting in between and coming here. This is not my normal life. Please tell me it gets better.
Thank you Bels and SK. I had a sinus infection, then severe TN pain for a few days and took Percocet. Then got a bladder infection which has resulted in pelvic spasms. I can barely walk and it is obvious something is wrong. I am trying not to take the Percicet. The Percocet is for when I have a TN flare. All my docs want blood tests and this has been a huge, painful problem. There’s more…too boring and dramatic. Almost unreal. In fact, yesterday I had to cancel something and my friend wanted to know the symptoms of SS and I found myself tongue tied as I am having difficulty in so many areas of my body. What do you say ??? Thank you again… I will try to focus on better days ahead. 
This reminds me of a phrase one of my girlfriends who has Lupus and Fibro mentioned as the 'Crisis d' jour'! Crisis of the day sounds like it should be our 'catch phrase'! I hope you can get past all of this, I know I feel like I'm on the way to 'antibiotic poisoning'! If there is such a thing! I think the Lyme sufferers have a term that escapes me at the moment!
Get better girl! We need you!
SK,
Thanks for all you do here! Knowing that we are growing in number has put a smile on my face and today I really needed that!
Take care and gentle hugs,
Bels
Yea SK the fibro site is growing to
I know! Fibro is growing by leaps and bounds, and when I first joined there, about 2 years ago, it was only a little bigger than this group is right now! You gals are doing some very good work there! Rock on pb!
Wishing you well,
SK
You are welcome Bels, it's good to be here, and a great feeling to see this group 'bloom'!
WOO HOO is right! We rock!!!
I am currently researching the connection between previous viruses i.e. in our childhood (and later on in life) which caused the autoimmune system to go into a kind of "hyper-drive" making us predisposed and then later in life a "trigger" caused the same autoimmune system to again go into "attack mode" yet again, this time against our bodies. MORE TO COME!
SGoddess
Alright! I KNOW this is going to be good! Thanks Goddess, I knew you were digging around for an idea! I just knew!
Goddess, on the CMT group, we were just discussing 'triggers' and looking back and seeing things that were indications in childhood, and I mentioned that at 5 years old I was diagnosed with Rheumatic Fever. This was a bitter pill for a kid that age to be kept calm, no longer allowed to run. Then it hit me, I lost both of my grandfathers when I was five. Now, if that's not enough to make your heart sick, I don't know what is! Triggers...
Dear SK:
OMG! Exactly, when I was 5 years old(!) traveling in Mexico with my parents I became infected with the Polio virus, unable to use my legs, but recovered, extensive had physical therapy and after a year walked again, then 5 years ago I had the hysterectomy and that was my "virus" trigger waiting for an opportunity to reactivate my autoimmune system to go into hyper-drive. Triggers!!!
SK said:
Goddess, on the CMT group, we were just discussing 'triggers' and looking back and seeing things that were indications in childhood, and I mentioned that at 5 years old I was diagnosed with Rheumatic Fever. This was a bitter pill for a kid that age to be kept calm, no longer allowed to run. Then it hit me, I lost both of my grandfathers when I was five. Now, if that's not enough to make your heart sick, I don't know what is! Triggers...
What’s CMT?
Ben's Friend's Charcot Marie Tooth disease group.
Goddess, this looking back can just hit you like a ton of bricks, decades later, out of nowhere, it all comes flooding back and it finally 'clicks'!
Allergic, who is a member on many BF's sites is a nurse, and somewhere in the thick archives of the Fibromyalgia site, she either put up a discussion or responded to one, and gave us information that researchers had actually discovered that certain genes have 'on/off switches'. Wonder if they will ever be able to turn these off once they're flipped.
Now surely these are not the exact terms she used, or a complete and thorough description, but that was my translation of it! I'll leave her a note, and maybe she can enlighten us!
I remember how hard it was for me when my grandmother died when I was seven years old. She was such a loving and kind grandmother to my brother and I. The day we buried her, my brother and I were wailing uncontrollably in the back bedroom. My father sent my mother back to see what was going on with us. We wailed and told our mother why couldn't Nannie (our father's mother) have died instead of Grandma. Nannie was cold and distant towards my brother and I. Life was never the same without Grandma plus a lot of other dysfunction in my life affected me seriously.
Ah rodyanne,
I know, but it's made me a pretty good grandmother though! I'm not the grandmother I used to be, but then again when I was well I worked long demanding hours, had to work every every weekend and just about every holiday! I'm around more, but just not as young or as well.
Loss is a terrible blow to children, sometimes we learn far too early in life that it can be too short, and that people are breakable! I'm sorry you had to go through this too!
Wishing you well,
SK