New here and wanted to say Hi :)

[angielyn]

I have just been diagnosed but like I'm sure a lot of you I've had this a long time and never knew it. I knew something was going on but did the jumping hurdles with Drs who had no idea what was wrong... And to be honest, the dry eyes I blew off as allergies, other things I assumed was dry air so never even mentioned these to my Dr. DUH lol But for about 15yrs I had on and off fatigue, swollen glands, sore throats etc. Been tested for lupus more times then I can count!!! Of course it's always been Neg. I do not have family support at all, I'm 39 and all my kids are grown and out on their own and I guess are sooo tired of mom being sick that they think it's just all in my head. My husband did go with me to my appt. and knows the out come but I think he's as tired of it as he can get that he hasn't said one word... My kids haven't even asked how I made out at my Drs appt. sooo I haven't even told them the outcome.  It's bad enough to feel this way then to have family who just don't care doesn't help any at all. I don't feel sorry for myself or expect anyone else to either. I just wish they didn't expect me to be wonder women when I can barely function from day to day. So far it's just Sjogrens, my Dr did do more blood work and wants more x-rays to check for RA. I'm sure it will be neg. BUT who knows.

[stickgal]

Welcome!! From one newbie to another. There will be such support and understanding here for you that you have certainly come to the right place. Of course, nothing can surpass the love and concern of our mate or children. What a crushing blow that is! Make hubby read some literature or some of the threads here if he will and maybe he'll start to understand the depth of the illness(es?) you carry. If not, just do what you have to do for your own health and wellbeing and keep reminding him you can only do your best, not the best he might be used to. Chances are you are like many of us and tried to "do it all" and "be it all" despite how bad you felt. Now it's time to make them understand or make them get out of the way! I am one of the lucky ones. Course I've only been married two years, but he is very supportive and understanding. Good luck to you and I wish you the best!!

[Katybarstool]

Welcome Angielyn

Stickgirl is right, it seems us Sjoggies do our best to plese everyone, at the expense of our own health and, sometimes, peace of mind.

This place has been my sanctuary - I never leave without feeling heard. I'm sure you will be heard too.

Stay with us.

Kathyx

[Bucky]

Hi Angielyn - welcome to the forum.

You are not alone when you mention no family support.  For myself, my family is very supportive - they don't "get" the whole scope of this Sjogren's diagnose, but they are supportive.  Here's a link to another thread that might be encouraging to you to find others here that are in the same boat as you, https://sjogrensworld.org/index.php?topic=9429.0

Rest assured that when you come here, we "get it". 

This is a world-wide community of fellow Sjogren's sufferers made up of both men and women (although, the women far outnumber the men).  We range in age from 6 -70+ and everywhere in-between. 

Have you been put on any medicines for your Sjogren's yet?  If you haven't already seen an Ophthalmologist, I would suggest you see one for your eyes.  There are a slew of doctors that treat Sjogren's, but, each one is separate and has their own specialty.  It's also not uncommon to have more than one diagnose as Sjogren's tends to run in packs.  (RA, etc.)

I don't know if you are currently using any eye drops for your eyes, but if you aren't, when you do get drops, get the ones that are preservative free.  You can pick those up at any store like Walmart, CVS, Walgreens, etc.

I hope you find this site helpful to you in your Sjogren's journey.  You WILL find support here from people who walk in your shoes.

Bucky

[Joe S.]

Welcome to the forum. Most kids are not interested unless it impacts their lives. That is the way my youngest was. Now that she is married, has two small boys and has her own challenges with AI. Her view of her dad has totally changed. She even listens to my suggestions from time to time and understands my frustration with modern medicine. She and her older sister do use a mix of alternative med and western med just like I do.

Find what works for you.

[Kim]

Angielyn

One more newbie saying hi.  This site is so informative and helpful. 

I went back and read Bucky's link and everytime I read of unsupportive family, I feel blessed.  Because I do have a supportive one.  Even through all the years of not knowing what all was going on.  Probably 10 years at least.  Evaluated over and over for MS. 

Only recently have diagnosis started tumbling down.  Sjs, fibromyalgia, diabetic neuropathy, and CFS.

I had decided though that ANYONE who was negative about my illness(es), who didn't believe I was sick, who thought I just needed to rest or who said they got tired too and still worked, well they were dismissed from my life.  I wouldn't be rude or hateful or negative.  Always polite and civil.  I have suffered too much for anyone elses attitude to effect my life. 

My husband has been there every inch of the way.  God bless him.

God bless you too and I hope you soon find support.

[Carolina]

Hi Angielyn,

This condition/disease/whatever doesn't really show.  'But you LOOK terrific"!

Also, it is impossible to really grasp, most doctors don't understand it.

Your best place for understanding is here.

I find, too, that once you work through things, to some extent you just work with your own limits, take care of yourself, and realize you can't control what other people think.

If stuff doesn't get done, it doesn't get done.   The world doesn't come to an end.

Tell people what you want them to know,and let the rest go.   Easy to SAY of course.

Also easy to talk about working it out.   Things tend to change, and I find I can get thrown off track pretty easily.   like this month I've had a bad cold the entire month.

And a ton of medical tests for other things (my heart, legs and arms) AND minor surgeries on my hand on Tuesday!

It's always something more.

Oh, and 'so far it's just Sjogren's' is the world's biggest understatement!

Sjogren's is part of a huge constellation of autoimmune conditions and Sjogren's alone can attack every organ of your body. 

Seriously, having Sjogren's can be managed, but it can't be stopped.   If you're lucky you'll stay where you are.  But do keep reading here and do study up a bit.

The links here can give you an idea of the range and variety of conditions that can come with Sjogren's.

There's no need to panic, but trust me Sjogren's Syndrome is all you want!   More actually.

Welcome to Team Sjogren's!   I'm just a hanger on, since I'm always sero normal for every auto immune condition, but have Sicca Syndrome  (dry eyes/dry mouth), and a bunch of other boring stuff.

This is the sweetest smartest funniest most supportive group around.

Keep us posted.

Hugs

Elaine

[dbab]

Hi angielyn... Welcome!  I know exactly how you feel.  I actually have it both ways.  I have people I don't talk to about it because I know they probably don't care to hear and then I have people that I don't tell about it because they would just worry about me to death.  Either way, I pretty much need all of you to get through it day to day. 

[angielyn]

Thanks everyone for the Welcomes and words, they mean a lot.

Let me say that my hubby really has been great through all of this and sometimes I think maybe I ask too much of him, maybe not. It's just confusing. He never complains about my always being tired and being in bed. He does try and get me to be up and about lol BUT that doesn't work... I sometimes get mad at him and tell him to knock it off I don't feel good Thankfully though we both can and do laugh a lot. I have a bad issue with tripping and when it happens he'll ask where I'm going, I also tend to choke (can't breath) from time to time and he gets so mad at me because I panic and take off running! If I need crackers cause my stomach is bugging me so much he'll run to the store. He is great.. BUT, he doesn't seem interested in actually knowing what the problem is. I guess that could come from being told it's this or that and everything has always been neg. (Lupus, Lyme Disease etc.)

As for medications... My Rheumy has given me scripts for Lyrica and Mobic. PROBLEM is the pharmacy lost my Lyrica script. I do have an RN through my ins. who helps me lots with getting appts done, getting my Dr. to open his eyes and try this or that. She called me today to see how my Rheumy appt. went and I told her how they lost my script. SOO she's been on the phone all day giving the pharmacy an earful then calling my Rheumy to have them fax another script. THEN since my meds. need to be approved she's going to see if she can push them up a bit so it doesn't take too long. So, right now I'm taking nothing really. As for eyedrops right now I use Visine for dry eyes but they really don't always cut it. I did look at the pharmacy the other day and WOW they had way to many to pick from I ended up getting none lol

Kim, I have to say your comments on things people say are so true. I get so tired of hearing how people are tired to and still work, I need to get out etc. I really have an issue with this because it's just not the same!!! One day I posted on my facebook that I wish everyone could feel like I do for just one day. Just one.... I had an Aunt who said "What a live". First I wanted to come back with a smart comment then thought NO I won't let her get to me. My reply was "That's the problem, I don't feel alive" I understand she had breast cancer and beat it and all that and it bothers me, I was there for her and called her to see how she was. Then to comment to me something so stupid just really made me angry. But, I really do wish everyone could feel like I do for one day. And a WHOLE day lol My Dr. at one point had me on Celexa because I was getting so depressed. I was starting to feel like life wasn't worth living if this is how it would be. I kept telling my husband if it wasn't for him and the kids I'd hang it up. I know that sounds bad and I know I wouldn't ever do anything but man some days.... Some days it just gets me so bad. I really hope once I find medications that at least semi help I may have "normal" days/times etc.

I have had the "If it doesn't get done it doesn't get done" attitude for months. If I can't do it and no one else does it then it don't get done. If someone wants to complain then they can do it themselves. I feel bad enough I refuse to push myself because only I will suffer for it the next day. It's just not worth it to me. Most days I'm lucky I make dinner lol I honestly can not stand doing dishes because of how it makes my hands feel.

It's just sort of funny, after a few days of being dx'd I now sit here and LOTS of things make sense that didn't before. It actually amazes me that I never put any of it together. Then I sit and wonder about my daughter who is due to have a baby right now. She has a lot of symptoms but have heard it's not hereditary. She's had up to 25 ulcers in her mouth at one time, constant eye dryness etc. She is actually a week over due on having her baby, which is one main reason I have not mentioned anything to her. She doesn't need mom issues right now lol We need this baby to be born

Anyhow, once again I thank all of you and I'm off to read older posts

[Scottietottie]

Hi Angielyn 

I just wanted to add my welcome too!

Take care - Scottie 

[Pisces24]

I work with a BC survivor of 6 yrs and you'd think that person would be understanding of others with illnesses. No way. It is all about her and complain complain. It got so bad that if anyone in  the dept would cough - she'd send em an email on 'should they be working sick, she has tylenol & cough drops, tea might help that cough, etc etc" and it got to the point where management had to get after her to stop.

I am always surprised that the number of people who dont' understand and think you are lazy or faking it! I was a caretaker for my folks for many years so I guess my prescpective is different but Geesh!
Well they call Sjogrens the "But You Look Good" disease!

BTW: I am solo with no family at all but I have some 1st cousins I am close to that understand. I had to learn to be an advocate for myself which was hard as my history is being an advocate for anyone but me. 
But you learn.  Welcome to the Group!