Sjogrens World Forums

Sjogrens Topics => Living Life In Spite of Sjogren's => Topic started by: CMNK12 on March 12, 2013, 01:53:41 PM

Title: where is our friend sass?
Post by: CMNK12 on March 12, 2013, 01:53:41 PM
Hello to everyone,
     This is a call to all out there to type a note to say we love you sass and we miss you.
She is deeply missed and I just wonder where she is. May she be allright and my prayers are with her. CK
Title: Re: where is our friend sass?
Post by: aussie mum on March 12, 2013, 02:20:19 PM
I second that! Hope all is ok ~Sass~
Title: Re: where is our friend sass?
Post by: Sleepy In Seattle on March 12, 2013, 02:51:36 PM
I'm pretty worried - this has been a reeeeeally long time without any news.... :(
Title: Re: where is our friend sass?
Post by: quietdynamics on March 13, 2013, 12:05:56 AM

Yes, I wrote to Sass and did not hear from her, I was hoping maybe a family member would answer.

We can only have patience and offer our prayers.

Come on Sassy Lady, Spring is coming and and your garden will bloom.

A garden wreath of hugs coming your way...
Title: Re: where is our friend sass?
Post by: jpd54 on March 13, 2013, 09:24:48 AM
Sass,

We really miss you.  Please have someone let us know how you are doing.  Feel our arms around you giving you great big hugs!!!!

             jpd
Title: Re: where is our friend sass?
Post by: sass on March 13, 2013, 09:40:51 AM
I feel just terrible!  All of your notes and letters going unanswered.  I am still kicking the can around and I am bound and determined to beat this thing..I have had a few personal issues..my brother-in-law found out he had kidney cancer..no signs..in mid January and we buried him 30 days to the day of his Dx in Feb.  I have had so many issues with my Dad and that will probably only grow worse.

I recently found out that I have steroid myopathy that is attacking my muscles, which answers why I am growing weaker.  And to make matters worse..I have been determined to have progressive systemic sclerosis--Scleroderma.  The kind that is worse for my already diseased lungs..My Rheumy discribes me as the 610 LOOP that goes around Houston, TX...just I have all on ramps and no off ramps...meaning things just keep getting added to my body..but nothing quits or gets healed.

I have avoided this site for two reasons..The most important one is that I hated to bring you all this news about myself, because although it is all very heavy and devastating sounding...I am still very good.  I am still all about bringing awareness of what these autoimmune diseases are capable of..but I am also very aware of the depression that goes along with it too.  And formost...I do not wish to add that to anyone.  Know that I am well and good.  I am supervised by some of the very best doctors in the world.  I also plan on getting out and planting some flowers soon! 

My second reason for avoiding coming on is that, I have found that anytime someone does a google search on a topic that we may be discussing, It pops up there, for anyone to read, and brings them right back here to this area.   I was aware that people could come here and read, I just did not know that someone that put in the word sass and say constrictive obliterative bronchiolitis that it would show them my discussion and bring them to this  forum.  It disturbs me for the lack of privacy that there is.

I love each and everyone of you..but I do not like the idea of our conversations being exposed with a simple google search  and say I mentioned being mad at my husband and someone was searching for something, it pops up, and walaa..there is my conversation with you about my husband and I's conflict...nope..nope..nope..I can not do that.  I found this out quite by accident in by doing a google search on a topic and up popped my name and when I clicked on it ...I was brought directly here.  I love the idea of this sight and talking to so many people at one time..but I just am unable to expose myself on a forum like that any longer.  If you type in sass constrictive obliterative bronchiolitis...it brings you here...
https://sjogrensworld.org/index.php?topic=20491.0  (and to other places too)  sometimes i do not have to put in sass and it does this also..

I thank you all so so very much..i would love to stay...but I just can not do it.  I love you all!  You have all been such a big help to me..I will continue to come and read.   forever my love  ~sass~
Title: Re: where is our friend sass?
Post by: engy on March 13, 2013, 02:19:10 PM
Sass,
Thanks for checking in. I'm sorry you are dealing with so much. My mom is in the process of being dx with Scleroderma and I am very worried. I'm glad you are well cared for & keep fighting the fight.

Better days ahead dear!
Title: Re: where is our friend sass?
Post by: Sleepy In Seattle on March 13, 2013, 02:41:03 PM
Sass, THANK YOU for checking in with us....it is good to know you're out there and still kicking.

The privacy thing is a bit scary and I know you didn't mean to be a "poster child", but also keep in mind that you have left us all a rare legacy of openness and honesty that will probably help hundreds or thousands of people over the years to come....you and all your wonderful writing. So don't regret a moment of it!  :D

All the very best to you and your family  - and if you feel comfortable doing it, please do check in with us every now and then to let us know just generally how you are - no details if you don't want to of course - but know that we all think of you and hope the best for you.
Title: Re: where is our friend sass?
Post by: slccom on March 13, 2013, 08:53:32 PM
{{{{{{Sass!}}}}}}
Sharon
Title: Re: where is our friend sass?
Post by: CMNK12 on March 14, 2013, 06:51:02 AM
Just so good to hear from you, glad you are doing better so it sounds and hanging in there. Certainly understand the privacy issue. Take care and God bless you. CK
Title: Re: where is our friend sass?
Post by: slccom on March 14, 2013, 12:51:47 PM
{{{{{{Sass!}}}}}}
Sharon
Title: Re: where is our friend sass?
Post by: irish on March 14, 2013, 09:46:35 PM
sass, So glad to hear from you and so sorry about your brother in law. What a shock. Life throws curves all the time.

I can understand about the privacy thing. I have noticed this also, but can't say that my name has shown up in lights. In all actuality, there isn't much privacy left inthis world. I just made a reservation for a motel and the clicked in my name and knew my address and phone before I even said anything else. Life has changnend.

I am glad that you check up on us and maybe you could do a PM to someone once in a while so we could at least know how things are with you. I know that you will continue the good fight as long as you can and we are forever grateful for you ministering to us with you information and feisty spirit. Take care my friend. IRish