Author Topic: Hi, I'm a Newbie too....  (Read 5149 times)

Leelabird

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Hi, I'm a Newbie too....
« on: June 13, 2009, 09:40:34 PM »
Hello Everyone:

I've been all over the internet looking up various things about Sjogren's for a little over a month now.  I was diagnosed with Sjogren's and Psoratic Arthritis about two months ago.  My Rhem. doc has me on methotrexate now for about a month and a week now.  Sometimes I have a hard time understanding that I have something wrong and that these various things are not just in my "head".  It is so strange that all these things that have been wrong with me for years all of a sudden add up to these two diagnosis.  I'm still stunned and in disbelief I guess.  I'm up tonight because my legs were killing me.  Sometimes they are fine...but when they hurt....they hurt.  They ache..sometimes I can only describe it as bone pain...sometimes it feels like muscle pain.  Yesterday it was my neck aching...I also have lower back pain...dry eyes and mouth.  I also have psoriasis...which strangely enough is actually starting to look a little better since last week.  Hopefully that is a good sign.  My face at times gets really red...it causes my eyes to flare and look like I have something wrong with them.  My eye doctor said I have bletheritis due to rosachea, but since that time i was diagnosed with this sjogren's ...so I don't know if it is all related.  At times my face can feel like it is burning off...I am married and my husband has been very patient with me....although he is very quiet about it and will listen to me, but is not really interested in learning anything about it.  Perhaps that is just being a man, I don't know.  I think if it was the other way around, I would be helping him ...reassuring him that things would be okay.  Sometimes I just want him to talk to me about it...but he is just so quiet.  I've been gaining weight the past two years..part of it is from quiting smoking, but the past few months I've put on another 20 pounds.  This is really worrying me.  I haven't had much willpower to exercise ...I've been having alot of fatigue.  Boy...I just feel like such a winer and I don't want to be!  Well...it is 12:35 and I"m rambling...I haven't read too much on this site yet...but I plan too.  I'm so glad to see that there is something out there for folks like us.  Best to all...

lynnmarie219

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Re: Hi, I'm a Newbie too....
« Reply #1 on: June 14, 2009, 01:54:41 AM »
Hi Leela and welcome to Sjogrens World!


So glad that you found us....now you know you are not alone....everyone here understands and doesn't pass judgment because we have all been there in one form or another...so vent away....it will make you feel much better to get it off of your chest!

I'm so sorry to hear that you are in so much pain....I hope the methotrexate kicks in and begins to help with some of that. And in the meantime...feel free to read the information here and ask any questions that you may have...someone will come along and try to answer he best they can.

Welcome to the family....you will find support and friendship here!

jonnell

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Re: Hi, I'm a Newbie too....
« Reply #2 on: June 14, 2009, 05:11:11 AM »
Hi Leela and welcome to the forum.  My 4 year old little girl Jenna was diagnosed with sjogrens and this forum has been a God send for me.  The people here are wonderful and Ive learned so much.  Im sorry you are in so much pain,  Jenna has a lot of leg pain.  She started plaquinil about a month ago we hope that will help her.  Hope that you make some new friends here,  I have and it makes things so much easier to have the support of people who know what Jenna is going thru.   Hugs and Kissess  Jonnell and Jenna

Katybarstool

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Re: Hi, I'm a Newbie too....
« Reply #3 on: June 14, 2009, 06:32:08 AM »
Hi Leela

Welcome from me too.

I know what you mean about having a husband who listens, but doesn't want to learn more. Mine is the same. I have been drip-feeding him with information for the past couple of years since I was diagnosed. He has taken the most important message on board though - the fatigue, and is really good when I'm completely whacked. I hope yours is the dame.

By the way,  take Celebrex for my arthritic pain. Within a couple of days of taking it, the pain was more manageable. I have no experience of methotextrate, so can't offer any thoughts about that.

You will meet lots of wonderful people here, with lots of good advice. You will also have a few laughs.

I hope to get to know you better.

Kathyx

Patze

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Re: Hi, I'm a Newbie too....
« Reply #4 on: June 14, 2009, 07:18:46 AM »
Hi Leela!  

Welcome to the SJS World!  Please do look around as there are so many topics and oodles of information that it could make one's head spin (at least mine!  All right guys, quit the laughing already!  Tough crowd! (I'm just teasing);) :D).  Honestly, this is a great board, and there are so many wonderful members too!  

I'm sorry to hear about the body aches, my body does the roving aching too.  I just wish it would stay in one area all ready! ;)

Wow, the bletheritis must be driving your eyes crazy!  What do you do to manage that if you don't mind my asking?  Have you been put on Restasis by chance?  Or any other med for it?

Ugh, the stinging of Roschea is awful!  Do you do anything for it?  

Again, welcome and I hope to chat with you soon!

Take care -

Patze
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Scottietottie

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Re: Hi, I'm a Newbie too....
« Reply #5 on: June 14, 2009, 09:44:52 AM »
Hi Leela  :)

Welcome to Sjogren's world from me too.  Like yours, my husband is not interested into researching Sjogren's either also he certainly researches anything pertaining to himself!

I hope you find the site useful. It's certainly a friendly place to be.

Take care - Scottie  :)
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Leelabird

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Re: Hi, I'm a Newbie too....
« Reply #6 on: June 14, 2009, 07:39:52 PM »
Everyone:

Thanks so much for the welcome.  Wow...it is amazing how many people suffer from this disease and how different and personal it is for each person...not to mention that it can effect small children too.

Patze you mentioned about the Rosaecha and if I do anything for it...well I was taking an antibiotic....tetracycline I think it was called for a little over a month.  Then I was diagnosed with the Sjogren's.  During that time I had a UTI and perscribed another antibiotic...and I couldn't take both/ Anyway...I don't know if I can go back on it or not.  I actually have to ask my Rhem doc about it.  My eye doctor told me to scrub my eyes with eye wipes each morning and to use eye drops during the day.  I use the gel kind.  My eyes are still very dry at times.  I need to schedule another appt to let him know that I've been diagnosed with the Sjogren's.  My Rhem doc said the eye doc will probably have to give me a steriod type drop when I have a flare.

Do any of you have problems with your bladder too?  I get alot of UTI's...sometimes I need antiobiotic and sometimes I don't.  I think I have interstitial cystitis, but haven't had an official confirmation.  I've been to see 4 urologists in the past and one of them said I have inflammation in the trigone of the bladder and that it will stop after menopause.  Another one said alot of women get blood in their urine.  Well I just don't have blood...I have a lot of pain.  I could swear I have menstrual cramps...but it is in my bladder.  Very strange.  My Rhem doc said alot of people with Sjogren's have problems with their bladder.

Anyway...I hope I don't sound like I am complaining...I try to stay positive about things and thank god everyday for what I do have.  I do still feel like things could be alot worse then they are so I am thankful.

Thanks again everyone for your kind words and welcoming me to this great place on the web.  Have a good night.  Talk to you soon.

Gail

Linda196

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Re: Hi, I'm a Newbie too....
« Reply #7 on: June 15, 2009, 04:33:06 AM »
Hello and welcome from me, too, Gail.

You hit the nail on the head when you said
Quote
it is amazing how many people suffer from this disease and how different and personal it is for each person...not to mention that it can effect small children too.
. It's probably the most individualized of the autoimmunities, although MS must run a close second.

You'll find many kindred spirits in the bladder department, and hopefully some useful information, like the fact that some are on continuous or long term prophylactic antibiotic coverage, or the pros and cons of things like cranberry juice (as I understand it, big YES for infection, big NO for IC), and just how people cope!
Please check out our home page at http://www.sjogrensworld.org/index.html {{INCLUDES A LINK TO AMAZON SHOPPING!!}}
; and live chat at https://kiwiirc.com/client/irc.dal.net/#SjogrensWorld