Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: slccom on November 30, 2011, 06:41:02 PM

Title: Introducing myself
Post by: slccom on November 30, 2011, 06:41:02 PM
Hi, everyone. I'm Sharon, and I live in Colorado. I have had Sjogren's all my life, but didn't get diagnosed until June 2009 when my eyes finally went dry. I've always had Reynaud's, and never enjoyed winter sports. Always drink lots while I eat, had joint pain on and off since my teens. was queen of hand lotion and chapstick, and so on. I was told I had asthma, and took steroids for it, but my lung function was always fine. Everyone who looked up my sinuses said "It is a dry as the Sahara up there!" but nobody ever bothered to investigate why. My energy started drifting downward way back in my late 20s, but has really plummeted in the last couple of years. I'm on a CPAP and oxygen at night, have serious brain fog and will be applying for disability soon.

As a result of the steroids, my cataracts exploded and I had them removed, and a year later the capsule behind them went opaque and I had them lasered. That worked very well, fortunately. I am an expert on disability safety and accommodations. I have taught, and am a bass clarinetist.

Title: Re: Introducing myself
Post by: Joe S. on November 30, 2011, 08:22:24 PM
Welcome to the forum. Some of us have posted what we are taking in our signature. Good luck with getting disability. You might fair better if you are service connected.
Title: Re: Introducing myself
Post by: soycoffee on November 30, 2011, 10:02:41 PM
Welcome, slccom

Your expertise on disability safety and accommodation will be  Avery much appreciated here. Also, feel free to ask lots of questions. We serve up a variety of answers, from expertise that comes from our lives.

All the best,
Soycoffee
Title: Re: Introducing myself
Post by: mshistory on December 01, 2011, 05:09:04 AM
Hi Sharon, welcome to the forum! Interesting that you were told you had asthma - I'm going through all those tests now. Have the CT scan today and pulmonary function tests next week.
Title: Re: Introducing myself
Post by: KellyG999 on December 01, 2011, 05:44:35 AM
Welcome Sharon!! I live in CO as well. The snow is falling this morning and everything looks so beautiful.

I know what you mean - long before I ever heard about Sjogrens I was slathering carmex on my lips 10 x a day, had water with me at all times and never could eat a meal without water with every bite. (hello! issues!)

Good luck with disability and keep us posted.

KellyG
Title: Re: Introducing myself
Post by: Jellyb on December 01, 2011, 05:48:35 AM
Hi Siccom!
Welcome:-)
Title: Re: Introducing myself
Post by: DragonflyC on December 01, 2011, 05:59:59 AM
Welcome, Sharon!
Title: Re: Introducing myself
Post by: A66eyroad on December 01, 2011, 06:06:07 AM
Welcome, Sharon! Glad you found us --- this is a friendly bunch of folks with a vast collective library of knowledge! You'll find lots of support here, and you'll be able to offer others support as well.

Make yourself at home!
Title: Re: Introducing myself
Post by: Scottietottie on December 01, 2011, 08:22:01 AM
hi Sharon  :)

Welcome to Sjogren's world. You come over as a very positive person and that helps!

I hope you find the site useful. It's certainly helpful and supportive.

Take care - Scottie  :)
Title: Re: Introducing myself
Post by: Carolina on December 01, 2011, 08:29:10 AM
Welcome, Sharon!

This is the place.   Everyone has things to contribute and we all support each other.

Sounds like you've had a 'long strange trip' with Sjogren's.

I hope you've found some of the remedies and helpful products and solutions to ease your life.

Keep us posted.

Hugs

Elaine
Title: Re: Introducing myself
Post by: Duchess on December 01, 2011, 10:11:05 AM
Welcome Sharon!!

You are definitely in the right place for support.

Duchess
Title: Re: Introducing myself
Post by: susanep on December 01, 2011, 11:59:17 AM
Welcome Sharon, You have been through a lot like so many of us. Sorry you have had to endure this, but glad you found this place. It's such a nice place to come to when you want to ask questions, vent, make comments, just read, or whatever.

We are all here for each other, and that means everything. Looking back when I had no idea what I had, I was in a restaurant with my ex husband and a room full of people when I suddenly got choked so bad the people stopped eating to see if I was going to make it. lol....

Have a good day.
susanep  :)
Title: Re: Introducing myself
Post by: Narablueeyes on December 01, 2011, 06:03:46 PM
Welcome Sharon!  This is the place to be!!
Title: Re: Introducing myself
Post by: Patze on December 01, 2011, 07:01:27 PM
Hi Sharon,

Let me also welcome you to the SJS World and our family!  Please so look around as there is so much information here that its almost scary! :)

Seriously though (well, about as serious as I get ;)), if you can't find what you're looking for, don't be shy and ask away....there is usually someone about that might be able to help.

I also hope that you find this board as helpful, informative, and as friendly as I have these last several years.

Take care and hope to see you around the board!

Patze
Title: Re: Introducing myself
Post by: slccom on December 01, 2011, 11:00:51 PM
Thanks for the warm welcome to a club none of us would like to be in! I was an Rh baby, and the brain damage from that resulted in hearing loss and ataxia. I can't walk a straight line cold sober!

I'm having the most annoyance now with dry lips. I'm putting some version of Chapstick or Chapaid on literally every five minutes or so. They aren't really satisfactory, and besides Vaseline, is there a more portable and longer-lasting alternative?

The other huge problem is vaginal dryness. Sigh.

How do I do the signature line?
Title: Re: Introducing myself
Post by: slccom on December 01, 2011, 11:17:37 PM
Kelly G, I'm in Pueblo but go to Colorado Springs and Broomfield pretty often. Are you near any of them?
Title: Re: Introducing myself
Post by: soycoffee on December 01, 2011, 11:50:04 PM
Quote from: slccom on December 01, 2011, 11:00:51 PM
. . .
How do I do the signature line?
Up above the blue bar at the top of any page, there's the Hello <name> in big blue letters. Under that, on the left, is a menu line of separate forum functions. As you move over the choices, they go pink if active. The menu items begin Home/Help/Search/Profile/My Messages, etc.
Go to Profile and click on it.
Under that is Forum Profile, click on it
Under that, one choice is Modify Profile - Click on it
The information about diagnoses and medications is entered where it says "Signature" -- We're odd that way. Other forums brag. We don't, but the information can be helpful to others on the forum.
Title: Re: Introducing myself
Post by: Patze on December 02, 2011, 05:30:17 PM
Ah Siccom, very dry lips I sure do understand!  I can't use Chapstick or any other variety that contains petroleum...it makes things even worse. 

Now I like Alba and have also tried Un-Petroleum (they now have some new flavors that I need to try :)); thankfully they are becoming a lot more popular then when I first tried to find a variety that didn't contain some kind of petroleum based ingredient.


Patze