1st Sjogrens Support Group Meeting

[LizPetillo]

Just back from my first support group meeting (Willow Grove PA)
About 2 dozen people were there.
We listened to a presentation by a really good doctor on Sjogrens Neuropathy.
6% of Sjogrens folks get it ... and I've got it.
She explained about how the Sjogrens brain is different and that we get lesions on the brain (and spine)
The lesions can be in the motor skills parts .. or even in the emotion controling parts.
Helps explain depression and sadness. 
Not only are we bombarded with the realities of this progressive evil disease,
but the actual brain itself has physical changes ... lesions.
Let's all keep that in mind when someone is depressed or sad.
It's not always in their control to 'think happy' and there is no cure for the lesions.
No wonder Sjogrens mimicks MS ... both have lesions on the spine, etc ..

Anyways, it was interesting.  Some folks were drinking COKE and eating hot dogs or sandwiches.
(lucky freak'n ducks!) 
They all had voices that were just fine ... except me.  I can't talk hardly at all.
I was obviously the skinny new-sick person.  One lady looked worse than me. 
Little old lady with ggoggles for her eyes and her arms wrapped in bandages.
I hope I get meds balanced soon like those folks .. I'd love a freak'n hot dog in a roll!

Anyways ... good info.  Glad I went. 

[LizPetillo]

Oh .. I should say ... I was inspired to donate my body to Johns Hopkins Sjogrens Center for after I die.  I don't know how to go about that, but I can have my husband check it out.  The presentation mentioned that doctors take cadaver samples from Sjogrens folks who have passed and who donate.  Usually when these medical places are done poking around, they cremate and give the ashes to the next of kin.  I'm going for cremation anyways and if someone else benefits from my having the doctors poke at my dead body ... so be it! 

If I find out info on donations I'll post it here for anyone else interested.

[lynnmarie219]

Sounds like a very informative meeting Liz with a lot of potential for new information and friendships!.

How often do they meet?

Your very lucky to have such a wonderful support group close to you!

Thanks for sharing what you learned here with us!

[Bucky]

Sounds like a great group meeting of fellow Sjoggies.   

I've only met face-to-face one other Sjoggie person - and she's a fellow staff member here.     It would be nice to meet in person others who share this Sjogren's Road too.

I hope you plan on attending more meetings and make some new friends along the way.

Thanks for sharing any info you learn there.

I've asked my doctors about other patients w/Sjogren's - they say they do have other Sjogren's patients - but, because of the patient confidentiality, they can't share their names with me.   

Bucky

[anita]

Liz,

Johns Hopkins does NOT accept body donations...believe it or not.  My doctor is Dr. Birnbaum from the sjogren's center (starting seeing him before the center existed).  I looked into this very thing myself, but received an email reply from the Resource Development Mgr. at JH that they do not accept body donations.

I just plan on making sure I die at JH, then ask Birnbaum to make they do an autopsy and get whatever they can use for research this way.  Don't know if it will work and haven't discussed it with Birnbaum yet (cause I don't plan on checking out yet...LOL).

[YYC_ Mommy]

Wow, it sounds like you had an awesome meeting! Thanks for sharing the information

[PrincessPea]

I sympathize with you about your voice. I hope that your meds will be able to help in that area soon. I also find that hotdogs and stuff like sauerkraut burns my mouth to the point that I can't eat. Is that why you can't eat them, or is it not able to digest? I had to have a besoar (no idea on the spelling for that) removed from my stomach last year. It was basically a mass of raw broccoli, popcorn, etc; that couldn't be digested
due to impaired secretions in my stomach. Yuck!!! My GI put me on Nexium. I wonder if that could help you? Pardon the gross nature of my post, but it is what it is.
I hope that your support group works well for you. I'd like getting to hear the speakers- sounds quite helpful. So far I haven't found a Sjogren's support group in Birmingham. Good luck and God bless you!

[LizPetillo]

Johns Hopkins does NOT accept body donations...believe it or not.  My doctor is Dr. Birnbaum from the sjogren's center

DRATS!  I have an appt with VIVINO in Philly for his Sjogrens study.  I'll ask him.  I really don't want this opportunity for the research to go to waste.  Here I am .. willing to donate a body for a while .. someone must want it!!  (ha ha ... is it so messed up that no one wants it??)

Oh .. Dr. Birnbaum ... we are going to try to make an appt with him.  I may run into you at the waiting office!
He was recommended by the leader of the Support Group Meeting. 

[sleepy]

That is awesome that you have such a great support group, wish there was one in my area.

[newhorizons]

When National Sjogren's Foundation first started The National Patient Conference program, the first one was in Atlanta and I registered and attended.

I, like other, had not even met another person with Sjogren's.

IN THAT CONVENTION HALL WERE 300 PEOPLE WITH AUTOIMMUNE ISSUES. HOST ASKED THOSE WITH SJOGREN'S TO STAND UP. NEARLY HALF THE PEOPLE STOOD UP... THEN, HE INQUIRED HOW MANY WERE A SPOUSE, MATE, CLOSE FRIEND OF THE SJOGGIE.  YES, THE OTHER HALF STOOD UP.

TO BE IN A HALL WITH 200 OTHER SJOGGIES IN A LARGE CITY WAS OVERWHELMING TO ME, I BROKE DOWN AND CRIED AND CRIED...FOR MYSELF.       FELT SO ALONE AND SO ABANDOMED!

HUBBY HAD STAYED IN HOTEL ROOM AS OUR DAUGHTER AND YOUNG GRANDDAUGHTER LIVE IN ATLANTA AREA AND THEY CAME AND VISITED WITH HIM WHILE I ATTENDED THE DAY-LONG EVENTS......ALONE!    

MY FAMILY DID NOT UNDERSTAND MY PAIN AND SUFFERING... THEY THOUGHT OF ME AS A HYPACHRONDIC...MY PRECIOUS DAUGHTER NOW HAS BEEN DIAGNOSED WITH SJOGREN'S.

We have all moved forward as a family in the last 20-years and become 'seasoned' to the word Sjogren's to the point of being a household word!!!!

ENOUGH SAID ABOUT THE PAST... TIME TO MOVE FORWARD, ONE DAY AT A TIME!  Thanks for reading, if you got this far?

This road we travel is not an easy one, though just keep looking for that one little special thing about the day,
keeps my world turning, one day at a time!!! Think of me today, I'm thinking of ya?ll!

The fog has just about cleared and its time to do some bird and butterfly watching...  I hear my mockingbird buddy calling!

[Carebear]

How fantastic that you are about to join a support group, Liz!

I hope some day that we have one in our city.  The nearest one right now is some three hours away.

Please fill us in as you continue with these meetings, Liz.  I hope you find them helpful.

[quilt4fun]

Liz,
I'm also seeing Dr. Vivino, in fact I have an appointment this week!  I'm in South Jersey, so Willow Grove is a little bit far away.  I would like to find other PSS people in South Jersey, though.  I'm writing down my questions since my first visit 3 months ago.   My only "voice to voice" contact is with a lady that lives in the same building as my mother---500 miles away! I have yet to meet her, but hope to do so the next time we visit my mom.  I guess if I plan ahead and had some help, I sure would like to get to the second Support Group meeting!
Jan, and I love to quilt4fun