Sjogrens World Forums

Sjogrens Topics => Living Life In Spite of Sjogren's => Topic started by: Nettie on July 23, 2012, 10:02:36 AM

Title: Blast from the Past
Post by: Nettie on July 23, 2012, 10:02:36 AM
To those who may remember me, this is Nettie. For those who don't remember me, I use to be fairly active shortly after being diagnosed in 2005 and posted regularly from 2005 to about 2009.   I dropped off when I finally decided to pretend that I don't have Sjogren's.

I am one of the unlucky ones to be in the approximate 5% of Sjogren's folks who has central nervous system involvement and like many of you I have many other diagnosis'. 

I thought I'd stop by to say hi as I think of many of you often and I will forever remain grateful for the kind and compansionate support that I received over the years.

I refer many folks to this site as it has always been such a souce of inspiration for me. 

I am doing fine.  Since 2009 I have had cervical spinal surgery; removal of a disc and fusion, and I was diagnosed with neuropathy which is slowly progressing. 

Nettie / Itsmie
Title: Re: Blast from the Past
Post by: Cheryl on July 23, 2012, 10:43:50 AM
Great to hear from you, Nettie!  Please drop in more often!
Title: Re: Blast from the Past
Post by: Joe S. on July 23, 2012, 12:29:51 PM
Nice to hear from you.
Title: Re: Blast from the Past
Post by: lynnmarie219 on July 23, 2012, 01:26:24 PM
Hi Nettie!

Thanks for dropping in to say Hi and to let us know how you are doing!  :)
Title: Re: Blast from the Past
Post by: Bucky on July 23, 2012, 04:27:53 PM
Hi Nettie . . . glad you took the time to stop in and say hi.   :D

As you can see, Sjogren's World has grown by leaps and bounds through the years since you've been here.

Thanks for referring others to our site.

I dropped off when I finally decided to pretend that I don't have Sjogren's.

You might be able to run . . . but, you can't hide, right?   ;)  Sjogren's likes to tag along!

Take care and visit us when you can.

Bucky
Title: Re: Blast from the Past
Post by: Scottietottie on July 23, 2012, 06:33:41 PM
Welcome back Nettie!  :)

Popping in and out is what this site is for. Use it when you need it and if you've had enough that's fine! Pleased to see you any time.

Take care - Scottie  :)
Title: Re: Blast from the Past
Post by: MissyLouWho? on July 24, 2012, 06:20:17 AM
Welcome back!  I don't know you yet, but I hope to see you around and get to know you  :).  I also tried to pretend I don't have Sjs, but it didn't listen.  I don't like to be told what to do and Sjs is bossing me around!  It tells me when to sleep, when to drink, when to clean and when NOT to clean  :P

I also have some cns involvement, but mine is from a severe case of PTSD.  But having your cns messed with by any means is no fun!  What symptoms do you have?  Are you doing any exercises for rehab? 

Anyhow... WELCOME BACK! ;D
Title: Re: Blast from the Past
Post by: Nettie on July 24, 2012, 09:19:04 AM
thanks everyone for the nice welcome back.  For a little background, here's a summary; I have all the usual symtoms with Sjogren's, plus thyroid, GI, Bladdar, and neuropathy. 

As far as the CNS, I have the attacking T-cells in my spinal fluid so no one can really predict how this will and does impact me, but all I can say is I get feeling pretty bad whenever my immune system is active; via any illness, surgery, food sensitivities / allergies (lots), fatigue, etc. 

Over the years I have learned more and more about healthy eating and I work hard to eat mostly fresh fruits and vegetables.  I try to avoid process foods, sugar, high frutose corn syrup, preservatives and the long list of foods that I cannot tolerate.  I have become so accustomed to this way of eating that I can usually tell via my symptoms whenever I have eaten something that is not good for me; either mistakenly or by choice when cravings get the better of me. 

Nettie
Title: Re: Blast from the Past
Post by: Pisces24 on August 03, 2012, 08:07:13 AM
Welcome Nettie.

I am also one of the unlucky ones. On a fluke, they found lymphoma in three places in mid-April. I've gone through my 3rd chemo treatment and the CT scan shows that the chemo is working. I've taken the chemo ok but the symptoms after are the hard ones.

The third one was bad and I had a series of "events" both medical and personal along with it. But I got the help that I needed and did not have to end up in the hospital.  4th chemo currently on hold due to a thumb "infection?" from falling at home a few days after the 3rd chemo and on antibiotic.  Yeah I can still puzzle the drs. Sigh!!   Currently on short term disability and will probably have to take FMLA for a month too from work.

Sorry you have had so much going on. I know it gets hard to handle at times and you wonder if you will ever get back to close to "normal" and get very impatient with yourself. Hang in there.