Author Topic: G'day from an SJS Newbie  (Read 4768 times)

Flitterby

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G'day from an SJS Newbie
« on: June 03, 2009, 05:05:21 AM »
I've been recently diagnosed with SJS (love that there's an abbreviation for it) and have been just getting my head wrapped around it a bit.  I wasn't given any info from the Rheum doc, but he did offer to answer any questions I may have... and of course, I couldn't think of any at the time!

So far, SJS has answered so very many questions about weird things about myself that in many ways, it's a relief to finally have a name for some of my peculiarities.

I have had an odd cough for a very long time (over a year) and tests haven't really shown anything much to go on. It's an extremely wet cough that changes to dry and then back again. Either type is annoying and until recently really disturbed my sleep, caused me broken ribs (I have osteoporosis too).  There are tons of other things, but this one is the most frustrating and annoying.

I'm just starting to get into a habit of doing things 4x a day to help with the SJS - eye drops, nose rinse, hand cream and something else that escapes my memory at the moment... which is another of my problems. My memory bites. I lose/forget words mid-sentence, both speaking and when writing (and up to a few years ago I was a freelance writer!).  I use an online task program, 'Remember the Milk' to get me through the day and remind me of things I need to do each day and when. It helps a lot. Anyway, I've tried to be as pro-active as I can and have found that if I take care of things before they become an issue it helps. Like using the eye drops religiously.

I have sjs, osteo-arthritis, osteoporosis, diabetes (T2), lymphodema and had breast cancer in 2001.

But I'm not all about the chronic stuff. I'm 47, live in South Australia, but was born and raised in Saginaw, Michigan. My family, including 3 grown children still live in Saginaw. I have a brother and two sisters who live near each other in Georgia.  I was a freelance writer and wrote a book on using the Internet for Commodore 64/128 computer users, and now run a small web hosting and design business with my husband.  I'm also a 'remote student' studying IT Networking / Web Admin, but truth be told, I'm not doing too well with any of the non-Internet related topics. A lot of it is going way over my head where only a few years ago, these things would have been a breeze.  This aspect of things may not all be SJS related, but it's very frustrating.

My user name is because I really love butterflies and how they look so beautiful and delicate and flitter from here to there. I'm also a cat person. I was adopted by 'Noble', a black and white 'adolescent' last November. He's turned into one giant cat (they grow 'em big here in Australia!) who can stretch out to more than a meter in length. I'd wanted a cat for many years, and he just showed up on my back patio one night and we seemed to 'impress' with one another and he's been mine since. (Or is it I've been his since?)   ;D   My gift to him on Christmas Eve?  I got him fixed!  And that's how his name came about. He started out as 'Cow Kitty' because of his cattle type markings. But cow's are girls, so he became a bull. After getting him fixed, well, he's no bull any more... so ... Noble!   :D 

(We 'Aussies are a weird lot!)

I look forward to getting to know y'all and learning more about this disorder. It's good to know I'm not alone.

Cheers,
Flitterby

Linda196

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Re: G'day from an SJS Newbie
« Reply #1 on: June 03, 2009, 05:41:52 AM »
Hello and welcome Flitterby.

It sounds like you have a pretty good handle on things SjS related, and I'm so glad if this site in any way helped with that. The "brain fog" can, indeed be part of SjS, you'll find lots of mention of it here, and some practical approaches that people have found helpful. I find that it becomes worse if I become tired or stressed, improves with R&R, and that I seem to benefit from daily "mind games" that exercise the brain...word puzzles, Sudoku, and (my current addiction) hidden object games. "remember the milk" sounds great, I'm going to check it out.

Are you taking any treatment for the osteoporosis? Rib fractures from a cough are so unexpected and painful, I hope there's something you can do to strengthen the bones and hopefully prevent that from happening again.

I'm a butterfly fan as well, cats...not so much, we tolerate each other I guess  ;)
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Flitterby

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Re: G'day from an SJS Newbie
« Reply #2 on: June 03, 2009, 06:04:52 AM »
I'm taking Actonel for the osteoporosis, and walking daily. I also do aqua aerobics twice a week. It's helped a lot. I'm no longer cracking ribs all the time, and thanks to the aqua aerbics, I'm much more flexible than I had been.  I just recently bought a treadmill because it's going into winter here, and it rains a lot so this way I can walk whenever I want to and catch up on TV while I'm at it.

I like sudoku as well - and solitaire games. I try to get at least one game in a day. Hard, because I really struggle with time - I always seem to run out of day before I'm done with what I want to do!

Oh, I'm also on Plaquenil and Fenac.  I was told it takes about 6 months for the Plaquenil to help with the inflammation and arthritis, so I should continue taking the fenac until the other kicks in. 

JJ

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Re: G'day from an SJS Newbie
« Reply #3 on: June 03, 2009, 09:11:42 AM »
Hiya Flitterby,

   I'm JJ...just a hop skip and jump away, from your family living in IL now but was born in Georgia,

father in Air Force so moved all over. Ended up in Texas after he retired and now I'm

in a cold state due to love...I'm really thinking on the love part now due to the Raynauds...LOL..

I have Rheumatoid Arthritis along with Raynauds, BP, Thyroid, and SJS. People always talk about

the places they want to go like Hawaii, Italy, Greece, not me....always wanted to go to Australia.

Since this probably will not happen I'm just gonna make you my virtual Australia tour...lol..My ex

mother in law has Osteoporosis and i know how it can be for you. Coughing is something that

we have in common...sometimes its dry and then will change to mucus like in a blink of an eye...

okay not a blink but it is very peculiar. Brain fog for me is devastating due to my being a cashier in

a grocery store part time...If i get rattled because I forget somethin it makes me worse...this is

stuff i was doing in my early 30's and now it seems like a chore...back then I could remember codes

and I was a Office person who dealt with the closing reports...but i just don't think I manage as well now.

The thing is it isn't all the time but when it happens at work it can cost you.

As far as what Linda was saying like butterfly's ...cat's and I have this thing, I do not particularly like them

but for some reason they love me. Anyway I'm glad to meet you and hope to hear more from you in the

future and hopeful more good than bad. But remember we are a big family and are here for one

another to listen, and bounce ideas off of. Welcome!

JJ


djean87

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Re: G'day from an SJS Newbie
« Reply #4 on: June 03, 2009, 10:03:55 AM »
hi there hope you find info on here that helps ya i was living in georgia till 2005 around savannah.now up north of indiana with new husband of a year got married last may diagnoised in july last year with sjs,lupus,ra and depression ,htn.dry cough then wet cough also familar here,tired alot was a nurse for many years now trying to be my own nurse.am cat lover too have 4 of them and new puppy.unconditional lovers so to speak.have always wanted to see australia too.hope can get to know each other more.take care hope to hear more from you

Fairy

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Re: G'day from an SJS Newbie
« Reply #5 on: June 03, 2009, 11:19:06 AM »
Hi Flitterby!
Nice to meet you. I like the name. I like butterflies too, hence the name, Fairy. I like the adult Fairy paintings with the beautiful wings!
I'm glad you found us. I have 3 AI's. SJS, Hashimotos, and RA. Plus, fibromyalgia, OA, DJD, DDD, and RSD. I'm 43 and feel as though I am a mess! You will find so much support here, and answers to so many questions.
Welcome.

Dolly Dimples

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Re: G'day from an SJS Newbie
« Reply #6 on: June 03, 2009, 02:24:43 PM »
  G'day  Flitterby, welcome to the club,

                 you certainly got a lot going on .. but seems like you have adjusted to it ..
                                                                                                                    as well as one can!

         I'm Dolly in the UK, got the dry issues, with intermittent upper back & rib issues.
              Stay with us and enjoy the ride!.. Dolly.


   


       

lynnmarie219

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Re: G'day from an SJS Newbie
« Reply #7 on: June 03, 2009, 04:54:19 PM »
Hi Flitterby (love the name) and Welcome to Sjogrens World!

I'm so glad that you found us and told us some about yourself! Its nice to meet you and I hope that you continue to find this site useful and a place where you can  feel comfortable and supported! Everyone here understands because many of us have been through so many of the same things on varying levels...I agree with you....its good to know we are not alone in all of this!

Browse the posts, look over as much information as you care to and join in a chat if you feel up to it.

Welcome to the family!

Scottietottie

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Re: G'day from an SJS Newbie
« Reply #8 on: June 03, 2009, 04:56:03 PM »
Hi Flitterby  :)

Welcome to Sjogren's world. Coughing and breaking ribs - ow! Brain fog - par for the course. Make sure with all the blood tests that they always do thyroid tests too. Sjoggies thyroids often go wrong and that gives you brain fog plus!!

Plaquenil does take a while to work and may ease the fog. It helped mine - and also gave me more energy. I'm still popping pain pills though. (Some of that may be osteoarthritis though)

I hope you find the site useful.

Take care - Scottie  :)
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Flitterby

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Re: G'day from an SJS Newbie
« Reply #9 on: June 04, 2009, 06:06:19 AM »
Thanks for the warm welcome everyone!  I just sent my husband a link to the conversation on Brain Fog because so many of the comments could have been my own. I know he's aware of my issues because it's usually when I'm talking to him that I forget what I was saying or forget a word mid-sentence.

And the cough!  Man, just knowing there are other people who have the dry/wet cough issue is a blessing to me. I've felt like such a weirdo.


Anyway, back to read some more...  :-)

eyeamdry

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Re: G'day from an SJS Newbie
« Reply #10 on: June 05, 2009, 09:27:32 PM »
Hi Flitterby-
I'm reading this from Kalamazoo, MI.......as you know just a couple of hours from Saginaw, MI.  I just now thought of the song "l was born in Saginaw, Michigan"  by a country singer and am having brain fog.  But, the reason I wrote was to say hi and it's really funny to hear a Michigander now living "down under."  Welcome, Lucy

PS. Now I have to google the song to find out the singer.  Glen Campbell, no, Mel Tillis, no.........ck....

PPS.  I googled and found the names Lefty Frizell and Bill Anderson both "attached" to the song.  I remember Bill Anderson
« Last Edit: June 05, 2009, 09:35:36 PM by eyeamdry »

Americana_Mama

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Re: G'day from an SJS Newbie
« Reply #11 on: July 21, 2009, 08:52:21 AM »
Girl...once a Michiganian, always one...good to have you on the board! I'm living in Oxford...south of Lapeer, north of Pontiac. I love the Australian folk, however. Some of the coolest people alive! Hope you are having a good day today.

Robin


Patze

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Re: G'day from an SJS Newbie
« Reply #12 on: July 21, 2009, 02:24:18 PM »
Hi Flitterby,

Let me also welcome you to the SJS World!  I'm glad to see that you've found us! 

A transplanted Aussie, eh?  No worries, we are from all over the planet.  I too like your name and I spend the early part of the mornings just watching them go about their lives when I can; they are so amazing! 

And yep, I also got adopted by a four legged feline (well, kidlet went about her life and we had to adopt each other! ;)), and huge too (got to be big around here as they are some brutes running around this town, and I ain't even talking about the ones that are packing (just kidding)! ;) :D).

I'm super glad to see that you've been diagnosed!  That's great as you don't have to wait it out for a diagnosis!

I know what you mean about the brain fog, good grief!  I tell you, people used to wonder what the heck was wrong with me - and that went on for quite a while before I found this board and some answers; a lot more than I was getting from the doctors.  I'm still learning how to deal with it, but it's a lot better than it was, and that's always a plus!

Please come often, and I hope to chat with you soon.

Take care -

Patze
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