met sjogrens person today

[Gayle]

I met one person who is the owner of a pharmacy. Her voice was very raspy, like mine and she came over to help me find eye drops with a bottle of water in her hand. I looked at my water, thought about my voice so I said - 'you have Sjogrens'. She looked shocked and said yes! She has had a terrible time with it, 9 weeks in ICU for ILD and another month in rehab.
She told me there is one other person somewhere but she did not know who HE was. Pretty amazing for my small town of 1400 people, though the county has 43000. Unfortunately she seems rather shy or uninterested in becoming friendly.

Gayle

[eye2dry]

I forgot to mention the lady I am refering to in this post:

she says she came down with Epstein-Barr virus and suffered with that for 2 years and then her sjogrens symptoms started.

From reading everyones replies....it seems like there are a lot more sjogrens folks out there than are being tallied up. It appears we are not that "rare".


eye2dry

[CAT1962]

I was diagnosed and work in a grade school. When I mentioned it to someone that person told me two others had it, too! I was kind of shocked. One, I think , is Secondary..she has a lot of RA issues, and one is Primary like me. Both are  about 3-4 yrs older than I am. The one that is Primary has had several knee surgeries but insists that it is NOT SjS related, although she doesn't exactly know how her knee got so bad. Hmmmmm...lol...The Primary one and I used to talk a lot about our dry mouth, eyes, and the fact that she has met other SjS people with what WE think MAY be related....VERY hard to get numb at the dentist's office. Anyone here like that?? Anyway, she is or has filed for disability and will not be back, and the other moved to another school...I am A.L.O.N.E....LOL

[iraisin]

I agree eye2dry. I think there are a LOT of people out there not realizing their symptoms are linked (like me for all my life) and a lot that are misdiagnosed. I had never heard of this disease until Venus got diagnosed. And I certainly never considered the thought of me having it...until I was diagnosed.

There's a lot of people suffering out there, and they don't even know there's help for them. I find that a horrible tragedy.

[Winnie]

Sitting at lunch today, someone brought in icecream for the staff and I had to say "no thank you" due to my food allergies which many of my co workers know about.  It is difficult to hide.  I was sitting by my new boss and felt the need to explain to her later.  As vaguely as possible, I told her some of my issues and she indicates having RA among other similar problems!  I flat out asked her if she was on plaquenil and she said "yes!"  What a small world. What is really wierd about this is that the other night I had a dream that my new boss had an autoimmune disease like me. 

I think I can handle going back to work now. 

Winnie

[Gayle]

Winnie~Pay attention to your dreams! Please let me know if I need to play the lottery! Work will be so much better with someone who understands!

Cat~ I have trouble getting numb for the dentist. I can't have most of what they normally use and the other takes 3 x's the normal amount...

eye2dry~ I had EB virus also, super high titers... but had symptoms before I knew I had it. Just didn't know what the symptoms went to...

[jazzlover]

That's amazing, Winnie!!

I hope our dreams don't always mean things. I dreamt the hospital sent me a letter saying I had diabetes. I was in the ER last Saturday and the dream was like Sun or Mon.

My glucose levels are always good, but I do have neuropathy. I think I was just worrying about it.

I've never met anyone with SJS!

Cat... yep, ME!

knee pain = Lyme most of the time and I made a rhyme .. gag me

[artistangie]

count me in on the hard to numb at the dentist

AND

my epidural didnt numb me, i broke the restraints coming up off the table when the doc cut into a "hot spot" during a C section

[Winnie]

I am going to bed now...Maybe I will have good dreams about all of us being cured!!

Winnie

[Gayle]

Artist!!
I came out of an epidermal too! I was having surgery to remove ovarian masses... I can't have regular anesthesia...
Apparently I couldn't have an epidermal either...

hugs

Gayle

[Aquarius]

Since sjogrens I am VERY sensitive to the dental numbing.  I start shaking throughout my body.  Sjogrens has affected my central nervous system I am sure of it.

[Nymph]

It's weird that a few of you have said that your mom has SS, too. Isn't it supposed to be pretty rare to pass it to one's kids? I have been saying for the past year or so, "I have whatever my mom has." We even have the same hip that hurts! Only she is 64 and I am 33.     So the other day after my rheumy told me that I probably have SS, I had my mom watch the videos put out by the SS Foundation. The next day she said:

"Well, you didn't get it from me! I am healthy."

I said, "Even though you have all the symptoms?"

"Yes, even though I have all the symptoms."

So there you go. I guess the good news is that she hasn't had it very bad, so maybe I won't, either? I just know that I don't want to go through life with that little energy. If I have to be "sick" to get a treatment that makes me feel and function better, so be it!

[Luna]

It is so nice to meet someone who has what you do. Especially since it is not something that common.. They understand what you go through.. The other day I was getting my hair cut. Turns out the woman doing my hair has sclederma.. We were so happy to talk to each other and be able to understand what we both deal with and discuss doctors and such.. I could literally see the excitement come over her face when I said yes I have sjogrens..

Luna

[jazzlover]

My mom passed away in 2005. Looking back I think she also had Sjogren's. But I also believe she had Lyme disease. We were all exposed numerous times in the 50's and 60's.

I was dxd with SJS in 2008. I remember now her saying that it felt like sand in her eyes and she also had a dry mouth. She was ALWAYS drinking water (mainly because she was so dry.) They checked her for diabetes a million times. Never checked her for SJS, I don't think.

[slccom]

I can get numb at the dentist, but my liver is so well acquainted with the lidocaine or whatever that it processes it lickety-split. This can come in handy when I have a band rehearsal afterwards, as it is an interesting challenge to play a reed instrument with a half-numb mouth. Luckily, everyone is always clearing their spit valves...

Sharon