Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: arabrablynn on October 25, 2008, 09:06:19 AM

Title: Young Yins. Age 25-35?
Post by: arabrablynn on October 25, 2008, 09:06:19 AM
I have actually noticed several people that are young (like me) being diagnosed with sjogren's syndrome. I thought maybe I would start a post for those of us in the 25-35 year old age range. I love support from everyone on this site but thought it would be nice to converse with people my age as well. I am 30 btw...
Title: Re: Young Yins. Age 25-35?
Post by: lady nova on October 25, 2008, 10:24:59 AM
Hey there,


That sounds like an awesome idea. I like that a lot. I think also being young there are things that Sjogren's does to our social lives and things that are particular with people that are supposedly young with Sjogren's. UGH!!!


Take Care,


Lady Nova :)
Title: Re: Young Yins. Age 25-35?
Post by: daydreamer on October 25, 2008, 02:49:41 PM
Hey there,

Yup ditto here! This community is great for support, but to have people in your own age group that can relate to your problems is especially nice. Look forward to talking to everyone. Take care and best wishes.

Kim
Title: Re: Young Yins. Age 25-35?
Post by: SilberKatze on October 25, 2008, 07:43:24 PM
What about someone who is 19? can she be in it too?
Title: Re: Young Yins. Age 25-35?
Post by: Nathan on October 25, 2008, 08:39:38 PM
Or 23? Heh.
That is a really good idea.
Title: Re: Young Yins. Age 25-35?
Post by: daydreamer on October 25, 2008, 08:50:47 PM
Hey guys,

Sure why not  ??? I'd say 18-35 is a good age bracket  ??? What do you think arabrablynn?

Title: Re: Young Yins. Age 25-35?
Post by: arabrablynn on October 25, 2008, 09:01:13 PM
Of course 18-35 is a good bracket! I didn't mean to exclude anyone. :)
Title: Re: Young Yins. Age 25-35?
Post by: Billydude on October 25, 2008, 10:51:07 PM
Perhaps we should have one then for the older people and exclude the younger.  LOL     Support is support no matter what the age.
Title: Re: Young Yins. Age 25-35?
Post by: Linda196 on October 26, 2008, 05:05:52 AM
But Steve, none of us is "OLD"!

I know the "youngens" don't mean to exclude anyone...they just have more in common with each other than Sjogren's. Of course, we of more experience and expanded lives, probably discuss a lot of things outside the realm of SjS that they aren't familiar with too...like "the hippy  years" and "walking to school, 10 miles in a blizzard, uphill...both ways!"

"Kids", if you want a thread for your own interests (I'm guessing school, dating, young families...just getting your lives on track and started), I think the "Social Hour" would be a great place to start it. I think of that topic as the "over the back fence, neighbour's chat", coffee-shop atmosphere, just for hanging out.
Title: Re: Young Yins. Age 25-35?
Post by: lady nova on October 26, 2008, 05:58:41 AM
Perhaps we should have one then for the older people and exclude the younger.  LOL     Support is support no matter what the age.



Hey Everyone,


     I'm sorry if it seems that this message board excludes others, but there is a stigma of being young and sick. A lot of people can't believe that you are young and sick... because you don't look sick. Let's put something into perspective for you guys... imagine being a young man or woman, and you are having a really bad day with your Sjogren's say with dry mouth, and you are out on a date that evening, and you can't kiss the person you are with the way you would like because of Sjogren's. Trust me, kissing with a very dry mouth is not fun. Anyway, you have to kill the moment and explain to your date or significant other why you can't do this or that... and you have to pray that they will be understanding, or that you are kicked to the curb. I will tell you this, particularly from what I have observed with my generation is that they are lacking in compassion. It is VERY rare to find someone that is compassionate. I know that there are those of you that are old with spouses that don't quite understand it... so I do feel for you guys. And not to criticize anyone that got Sjogren's later in life, but those of us that have lived with autoimmune issues for practically ALL of our lives, some of us the last time we felt well and healthy was when we were in elementary school.

    And yes, there is job discrimination, I don't care how young or old you are, but when you are sick, unless you have a really cool boss that is willing to work around your health issues, you are screwed. They do not want to help sick people. There have been mornings that I have been in EXCRUCIATING pain where I could barely get out of bed in the morning, and I got into an internship I had at 10 AM, instead of say 9AM. I could NOT tell my boss that I am sick, and that the reason why I come in kinda late is because I'm in pain when I get up in the morning and need the extra time to feel like a human being. When you are a younger person and you get sick, and you are low on the food chain in the job market, you are definitely expendable... and in this job market that is just a fact of life. It is like Social Darwinism at work... Eat or get eaten!!!! I would be ROYALLY screwed right now if it weren't for my parents. But if you were to ask me roughly 10 years ago at almost age 18 if I would still need my parents support for my day to day living I would have said NO.


All Best,


Lady Nova :)
Title: Re: Young Yins. Age 25-35?
Post by: lurkernomore on October 26, 2008, 06:55:31 AM
At age 51, I strongly suspect I may have had Sjogren's since my early thirties. But my real problems did not begin and become unavoidable until a few years ago. I cannot imagine trying to take classes, work or have a social/dating life in the shape I am in right now.

So I totally understand the desire to have a place, thread, whatever, for the people who are going through these hardships to hook up and discuss what their lives must be like. And to all you young whipper-snappers (and I do mean that jokingly, not disrespectfully) I want to say that I feel very deeply for you and respect your drive and ambition to keep going with what you are dealing with.

For those in our 40's, 50's, 60's and 70's, I admire US, too. This is like a war we are waging within our own bodies and it is an every hour, day-to-day war. But we must be winning, or at least, staying ahead. Because hey, we're all still here posting, right? ;) JMHO, but I hope people will understand that it has to be daunting to be dealing with SS at such a young, tender age and the need to touch base with those who are going through the same thing must be very strong.
Title: Re: Young Yins. Age 25-35?
Post by: daydreamer on October 26, 2008, 09:46:06 AM
Arabrablynn,

I didn't mean to imply you had wanted or meant to leave anyone out. I hope you didn't take it that way. I just feel that we do need a thread where we can talk to people within our age bracket that can relate to us on a better level. I figured 18-35 would be a good range. Thanks for starting this thread it has brought out us "youngins" so that we can converse with one another.


To the older people out there,

I'm not saying (and I don't think any of us younger people are) that you can't help us and give us support. I appreciate (as I'm sure we all do) your feedback and added wisdom. However, we do need peers that can understand our struggles with this illness being young and trying to establish our place in life.


Lady Nova,

I couldn't have said it better myself! I've been sick since I was 11 (just turned 29 last month) and never had a normal teen experience  :( I had spent most of my middle and high school years on home instruction and dealt with the ridicule of my peers. "How can she be sick, she looks fine" "She just wants attention and is trying to avoid school" etc. etc. etc.
 
The pain, the fatigue....I can relate to it all. Oh and yes the "she doesn't look sick" line I've even heard that now as an adult. At my job (which I unfortunately haven't been able to go to in the past month or so) I've had people tell me "no one is going to understand or believe you when you tell them you're sick because you look too good!" How aggravating!

Title: Re: Young Yins. Age 25-35?
Post by: kcoffiner on October 26, 2008, 04:13:07 PM
Hi:

I am a young one too. Dx'd at age 26, 27 right now. I would love to chat with any youngesters my age. It is really hard dealing with this illiness especially at a young age when we have so much pressure to establish careers, meet significant others, etc. Not to say it is easy at any age, it is certaintly not, but it would be nice to chat with others who feel the same pressures I do.

Count me in.
Title: Re: Young Yins. Age 25-35?
Post by: lady nova on October 26, 2008, 07:06:38 PM
Hey Everyone,


    I second what everyone else has said too. For once, I don't feel so freaky. Like honestly, sometimes even I get sick of trying to explain how I feel to people. I mean people that don't understand. I always feel like I have to wear a badge that certifies that even though I don't look sick, I am in fact quite sick. Ok, and just to clarify, I'm  better now than I have been in recent years. But still... I'm getting a bit of a flare this weekend and it isn't fun.


All Best,

Lady Nova :)
Title: Re: Young Yins. Age 25-35?
Post by: SilberKatze on October 26, 2008, 07:54:33 PM
Has anyone heard of the Spoon story? it's on "www.butyoudontlooksick.com" 

I find it to be very helpful when trying to explain to people how I feel everyday. there are some Sjogren's peoples there also with others. ^_^  I go there when my dr. thinks I have something new or if I have a question. I go there to find out, since they have many people there with different types of stuff. it's neat.

Title: Re: Young Yins. Age 25-35?
Post by: lady nova on October 26, 2008, 08:31:31 PM
Hey SilberKatze,


    I have heard of that webpage. I liked the spoon analogy. If anyone doesn't know it, here it is in brief. This woman that started the website needed a way to explain her lupus to a friend. They were out a a diner, and she picked up I forget how many spoons. Anyway, she explained that she has to choose carefully what she does during the day. Like say getting dressed in the morning, that would take away a spoon or two. and if she had say 5 spoons, that would be she would have 3 left so she had to chose her activities very carefully. As each spoon was taken away, it mean less energy you have to do things. Once all the spoons are gone it means you have no energy to do those things, and the things you did do, you are suffering the consequences of having done them because it is painful to do those activities. It is a great analogy.

All Best,

Lady Nova :)
Title: Re: Young Yins. Age 25-35?
Post by: Lowell on October 26, 2008, 11:24:52 PM
Hey there,

I'm 22 (almost 23) and totally understand how hard it is to be young and sick. I got sick back in January and when I got married this June I was sick on my wedding day and on my honeymoon- which sucked but I made the best of it. I was still undiagnosed in June (I wasn't diagnosed till August) so the plaquenil helps some now.

Looking forward to talking to everyone!

Lowell
Title: Re: Young Yins. Age 25-35?
Post by: lady nova on October 27, 2008, 06:30:29 AM
Hey Lowell,


    How is your hubby taking it? Is he supportive? I'm still young and single, and I find it is difficult for people to understand because I don't look sick, and I get so sick of explaining to people that I'm not making this up. I'm glad the Plaquenil is helping you. I think that was the big thing to help my fatigue.


All Best,


Lady Nova :)
Title: Re: Young Yins. Age 25-35?
Post by: Lowell on October 27, 2008, 01:41:14 PM
Hey lady nova,

My husband has been really great about all of this. I'm really lucky that he is so supportive. I had to stop working in March (because of the fevers and fatigue- which I still have) and even then he was great and told me to just focus on getting better. I think it's hard for him to watch me be so sick and not be able to do anything.
I understand what you mean about not looking sick and people not understanding what's going on. Without makeup, I do look sick though- I have really really dark circles under my eyes and my skin is pale. What I find especially hard is explaining how I feel to people who don't see me everyday, like friends from out of town. On Saturday my husband and I were invited to a Halloween party my friend from college was having and it took a lot of effort on my part to get all dressed up and go out, but I was determined to go and have fun. I got there and there were people at the party I hadn't seen in a while and they came up and asked me how I was doing and how life was going and I didn't even know how to answer them. I didn't want to bore/burden them with my whole story, or tell them I was sick. I did tell this one person I'm friendly with that I has SS/Lupus but she didn't know what they were and it was really awkward trying to explain it in the middle of this party. So the rest of the night I just said I was fine. Even my friends who I see on a regular basis don't really get it- they sort of think I have the flu or I'm just really tired. I don't blame my friends though- I mean how can anyone really understand what we go through except us (and possibly some people really close to us). But it still is really hard.

All the best,
Lowell
Title: Re: Young Yins. Age 25-35?
Post by: Maremma on October 27, 2008, 06:08:15 PM
It really is a good idea for the people of the same age group to support each other. I was in your shoes and had to walk it alone. I was very ill in my teen years and it just got worse and worse on the inside all the while the outside just "looked so good". My heart breaks for every one of you. Even at the  age of 40 people are still incapable of grasping the concept that I just cannot keep up with them indefinately. I'm sure none of us "older people" have any hard feelings whatso ever.
Title: Re: Young Yins. Age 25-35?
Post by: lady nova on October 27, 2008, 08:06:32 PM
Hey Lowell,


      I know what you mean. I've just smiled and nodded to other people, I don't tell them the truth as to how horrible I would feel. I got sick at a much younger age than you did. I was 13 when it started, but I believe I've had issues with Sjogren's and another disease I have since I was very very young. The pain, and fatigue that I live with started when I was 13. So for the longest time life was not very fun for me. On a positive note, at least I got out of doing volley ball in gym class growing up. ;D  But in all seriousness, most people can't believe I'm sick. I just say I am "fine". The nice thing is that I have a close knit group of friends and they are totally coo about me being sick, and have been very supportive. Also, my family, particularly my mom has helped me a lot.

     I am doing better now than I have in years, but at a price. I've gained weight from some of the meds I've been on because I was soooooooo royally depressed and everything. It has been horrible. It isn't fair. Is your hubby your age? How did you meet him? I hope you don't mind me asking. You don't have to say if you don't want to say, or you can if you want just to send me a private message. You are lucky that he cherishes you. I think in this day in age, people don't always understand what marriage means. I'm really glad we have this board for us "youngin's". Cant' wait to read more of your posts.


All Best,

Lady Nova :)
Title: Re: Young Yins. Age 25-35?
Post by: SilberKatze on October 27, 2008, 10:02:19 PM
It really is a good idea for the people of the same age group to support each other. I was in your shoes and had to walk it alone. I was very ill in my teen years and it just got worse and worse on the inside all the while the outside just "looked so good". My heart breaks for every one of you. Even at the  age of 40 people are still incapable of grasping the concept that I just cannot keep up with them indefinately. I'm sure none of us "older people" have any hard feelings whatso ever.

That reminded me of some things about when I first found out I had Sjogren's and whatnot.
At first my boss didn't understand at all, but she still kinda did. like giving me a couple months to heal and whatnot, but nowa days, I find it impossible to try to tell anyone about what I feel everyday simply because they either don't listen or don't understand. Even SS thinks I'm perfectly fine because I'm "young".  heh

Title: Re: Young Yins. Age 25-35?
Post by: lady nova on October 28, 2008, 04:47:50 AM
Hey Everyone,


      It is funny, even though I'm technically young, I feel very old. Today is my birthday, and it is making me depressed because I'm not where I would like to be in life. It reminds me of the YEARS of my life wasted being sick. Waiting for the day I would feel normal. I guess "normal" is a relative word. Like I have friends that are married, and some on pursuing the career paths of their dreams. I'm just hoping I stay feeling relatively ok... and pray that things look up for me, and everyone else on this board.


All Best,

Lady Nova :)
Title: Re: Young Yins. Age 25-35?
Post by: Linda196 on October 28, 2008, 05:10:09 AM
HAPPY BIRTHDAY LADY NOVA
[/size]

As I do with everyone on this board, I wish for health and happiness for you.
Title: Re: Young Yins. Age 25-35?
Post by: navydad on October 28, 2008, 12:37:57 PM
Two years ago,, I actually felt like i was 35,,, now I feel my age plus 10 years,,, so i think i;m going to forget about my last two birthdays and go back to feeling like i am 35 again
Title: Re: Young Yins. Age 25-35?
Post by: daydreamer on October 28, 2008, 12:55:21 PM
Way to go navydad!! That's a great perspective and attitude to have! Hey, I was griping that I recently turned 29 and fell like I'm elderly  >:(. I've told Lady Nova that maybe we could say we're 21 then maybe we'd feel like it  ;)

Lady Nova Happy Birthday! Hey at least people say you look young.....I get that a lot too  ;D....now back to about feeling young again....yeah we have to figure that one out  ???
Title: Re: Young Yins. Age 25-35?
Post by: SilberKatze on October 28, 2008, 01:50:12 PM
Well then Happy Birthday Lady Nova. ^_^ 
Title: Re: Young Yins. Age 25-35?
Post by: lynnmarie219 on October 28, 2008, 06:57:38 PM
HAPPY BIRTHDAY LADY NOVA!!!!


I hope you had a great day!
Title: Re: Young Yins. Age 25-35?
Post by: eyeamdry on October 28, 2008, 07:28:19 PM
Happy Birthday, Lady Nova
Title: Re: Young Yins. Age 25-35?
Post by: Lowell on October 28, 2008, 10:11:37 PM
Happy Birthday Lady Nova!

I hope you had a great day and I wish you a year of health and happiness.  ;D

Back to your earlier post- I met my husband (before I got sick) through mutual friends about 4 years ago. We were friends for quite some time before we started dating. He's a little older than I am- 28.

Sorry to hear that you're depressed on your birthday! I know how hard it is not to be in life, where you thought you would be. I was just thinking last night of what I failure I was for not building the career I thought I would be building. But then I have to remember that I didn't stop working because I'm lazy, I stopped working because I'm sick and can't work right now with the fevers and fatigue I have. I can only focus on getting better and try not to be so hard on myself.

Happy Birthday!
Lowell
Title: Re: Young Yins. Age 25-35?
Post by: lady nova on October 29, 2008, 07:39:17 AM
Hey Everyone,


    Thank you so much for the birthday wishes, and greetings. My birthday was a nice one actually. My mom gave me a little figurine as a little treat, some Ashers' chocolate covered pretzels, and a beautiful card. My dad unfortunately couldn't be here because he had a conference and is out of town, but he sent me this tea-cup and saucer with small pink roses, and baby's breath, with a sweet note he wrote in it. During the day, I went out "shopping". I had a gift card left over from Christmas, so I bought this little silver ring, inscribed on it were words like courage, strength, love, and joy, and on the inside, it said "family" on it. I thought it was sweet. Then, I went to Barnes and Noble, and had one of their fancy over-priced sandwiches and fancy desserts and drinks. I figured what the heck, it is my birthday. That evening, I went out to dinner with my mom, brother and gf. So all and all, it was a nice birthday.

   Today, I'm feeling depressed though because I am not where I want to be in life. If I were, I would be a physician now in residency, and helping people. I wouldn't be the one that needs a doctor. I still have the aspiration to do it, but sometimes my fun diseases have other ideas. I'm also 28 like Lowell's hubby. But I feel old because I have not done much with my life. :(  Also, I'm in a flare today. So not fun by any means. I wish every one the best. And again... thank you all for your birthday wishes.


All Best,

Lady Nova :)
Title: Re: Young Yins. Age 25-35?
Post by: SilberKatze on October 29, 2008, 07:43:13 PM
Sounds like your birthday was pretty good. ^_^

I wanted to be a computer tech, but now it looks like that'll never happen. I wanted to because both my parents are, my fiancee is, my uncle and aunt is. I never even finished homeschool...so I don't know everything I should, and I forgot most of it.

I hope you feel better. ^_^
Title: Re: Young Yins. Age 25-35?
Post by: lady nova on October 30, 2008, 08:57:31 AM
Hey Silberkatze,



     I believe it is never too late. Well, I always try to remind myself of that mantra. It took me 7 years to finish college, but I did it. Even though I felt stupid at times going to classes with people much younger than I am. In that regard, I like grad school much better because there are people from all walks of life in my classes. Like from people old enough to be my mother to say people a few years younger than I am. So it gives you a perspective. I had issues with my memory for quite some time so that made school VERY difficult. I am quite the grammarian, and I would make mistakes all the time. I would forget words I knew... I had quite the vocabulary, and I had been fairly fluent in Spanish. During that period of my life, I forgot it all practically.

I wish you all the best.


Take Care,


Lady Nova :)
Title: Re: Young Yins. Age 25-35?
Post by: SilberKatze on October 30, 2008, 12:19:09 PM
I was actually learning Spanish and some German, then at the end of 2006 when school started up for me...I couldn't remember very much...and I was failing alot of my classes. My aunt tried to reteach me the rear before's math...but I had forgotten alot more than that. So after trying for a year to get it all done and whatnot I thought I'd redo it when my memory is better. I have most of the books I need I have, so I can start anytime really.

Title: Re: Young Yins. Age 25-35?
Post by: arabrablynn on October 30, 2008, 05:27:19 PM
Wow! I've been out of town for a week for a medical convention and it looks like this forum took off! I'm going to get to reading the posts! I'm so glad to see a response!
Title: Re: Young Yins. Age 25-35?
Post by: arabrablynn on October 30, 2008, 06:06:20 PM
I just read the posts. I can relate so much to the "you don't look sick". People blow me off all the time. I totally say that "I'm okay" now instead of trying to give a full out explanation like I used to. However if anyone does ask about Sjogren's I'm all about educating! LOL.

People tend to get distracted and bored and just "push it under the rug". Like we're making them uncomfortable when we talk about our problems. Maybe they just don't know how to respond and want to change subjects so they don't feel that discomfort. That's why these forums are so great. We can blah, blah, blah all day and most everyone here is nice and doesn't take offense to anything you say.

Instead people seem to understand and take your perspective with an open mind.

There's no need to get defensive in here. We're all in this together. Some of us can just relate to each other more than others.

It's all good. :)

Title: Re: Young Yins. Age 25-35?
Post by: Nathan on October 31, 2008, 11:31:36 AM
I do the same thing, when people ask me how I'm doing, "I'm fine." How are your eyes? "They're okay." Very rarely does anyone want to know what's really going on (My 'rents). I kind of have to play it off as if nothing's wrong (to stay employed, among other things).
Title: Re: Young Yins. Age 25-35?
Post by: Kimmie02 on November 06, 2008, 07:25:02 AM
Happy Birthday Lady Nova!!  I'm sorry for the belated birthday wishes, but I am glad that you had a nice birthday.

You definitely hit the nail on the head with your earlier post.  It is hard to explain to people what you are going through, especially if you're young and don't look sick.  There are days where I think I look God awful, but I know it's really only my thinking and it's on the days where I don't feel so great.  People will notice when I don't wear makeup (because I normally do) but that's usually it.  I still try to walk around in my stilettos on my good days also because I am such a shoe fanatic and also on the short side (not quite 5'1"), so I definitely do not look like a person who experiences joint pain everyday.  I am lucky that my bosses are pretty flexible with time off, so if I ever need to go to the doctor or work from home once in awhile, they are very understanding.  I still can't help but feel guilty though because there is always so much work to be done and I want to do a good job for the company.  The thing that has been so helpful and important to my though is that my company has good health benefits.  When I was still in school and turned 23, I couldn't be covered under my parent's insurance anymore and that was such a hardship.  I had to work on top of going to college just to get some kind of coverage, which really didn't cover much.  Have any of you had to go through, or are still going through that?  I know that the costs between docs and meds can really add up.

As for the dating scene, Lady Nova I completely understand how hard it can be.  When I was diagnosed I had dated a guy who tried to be understanding at first but really didn't get it.  He would get upset when I was feeling blah and was in pain.  He would make me feel guilty for feeling that way because it happened too often for his liking.  I did eventually break up with him for various reasons, but that definitely was one of them.  Well now I have been with my current boyfriend for almost 4 and half years.  I have to tell you at first I had a difficult time because I would still feel "guilty" feeling the way I do and I would feel bad if I complained about it.  My boyfriend Chris though is wonderful and finally got it through my tired head that there was no reason to ever feel guilty and he wanted to know how I felt so he could take care of me.  I know that he can never completely understand what I feel (he's a very lucky man who almost never gets sick!) but he does his best.  He's my definitely my rock. 
I know it's difficult when you're single to find the right one, whether you're sick or not, but believe me there are wonderful people out there who will try their best to understand and take care of you just because they love you.  You will find that right person one day I know it!!

As for the age thing, I just turned 29 in April and have decided that this is the age I'm going to stay at , LOL!!  Next year I think I'm just going to be 29 again!!  ;) 
Title: Re: Young Yins. Age 25-35?
Post by: pudmott on November 06, 2008, 08:15:31 AM
LAdy nova

there is someone for everyone and when the time is right they will present themselves in your life. I believe people come into your life for a reason,  season or a lifetime and the come when its meant to be. I know there will be someone for you.

Kimmie
I wish i stayed 29. It was after i turned 30 that everything went downlhill.  I will be 36 next month. i think i will go back to 21 and start again but with the benefit of the last 15 years knowledge and experience..............lol

Pud
Title: Re: Young Yins. Age 25-35?
Post by: Kimmie02 on November 06, 2008, 08:29:34 AM
Pud,
That does sound like a good plan!!  It still feels like I was 21 just last week, it's really amazing how time flies by!
Title: Re: Young Yins. Age 25-35?
Post by: erinthevalkyrie on November 06, 2008, 02:55:38 PM
Hello to all the younger Sjogren's people out there.  I found this site a week ago, as I have been showing symptoms for a few months, but didn't put it all together until now because I am 27 and "too young" to get Sjogrens (even though my father, 3 aunts, and grandmother have it!).  Anyways, that is what doctors were telling me. 

But at the great advice of the members here I have my first Rheumy appointment next week to try to get to the bottom of this and start getting better.

A lot of you mentioned that your friends and family don't quite understand how you are feeling, and I guess mine mostly don't either.  But I think what has been most upsetting for me is the responses I have gotten so far from the medical community.  Maybe it's because I wasn't seeing the right type of specialists, but I have had 2 primary physicians and one ENT tell me I'm too young!  That has been the frustrating part of my very short journey with SJS...that the people I am looking to for help don't seem to have update their knowledge on this disease!  Are they still using the textbooks from 1970?  AAAHH!
Title: Re: Young Yins. Age 25-35?
Post by: lady nova on November 07, 2008, 06:28:16 AM
Hey Erin,

    Sadly, that is sometimes the case. Remember that not all doctors stay up to date on things in their field. Everyone here has had their share of shoulder shrugging doctors. But you have to keep going, persist and try to find the right one that will listen. Do you live near a medical school? If you do, you might get a good doc there. I know in my small town, the doctors generally suck! So all of my docs that I go to are in the city. It is funny when they all train at the same schools, and they are that way. I had docs treat me like my problems were psychological!!!!!! GRRRRRRRRRRRRRR!!!!!!!!!!!!!!!!!!!!!!! I'm glad you found the posts  board for us "youngin's".


To Kimmie,


    Thanks for the Birthday wish. It is funny this friend of mine I'm kind of seeing now, his name is Chris too. Well, I'm also Chris, but it is short for my name. I told him before we met up for the first time (I met him online chat... and yes I knew he was legit. LOL I checked out his background)... anyways, I said, you have no excuses not to remember my name. Getting back to it though, we have had a very complicated past. So we are trying dating each other again, but we aren't exclusive which ok I hate, because as we started talking again. I realized that I do love him, but the way things are I can't tell him that because it would probably push him away. So in my mind, I think of him as just a friend, and nothing more than that... or at least I tell myself that so that if he dumps me for this other woman he is dating that it won't hurt as much.


     Ok, let me explain so you guys know. I've talked to him since I was 21, and he was like 32 (I was going to be 22 that year). We were in yahoo chat, and either I was about to message him or he was about to message me, but one of us messaged the other. Anyway, he fudged his age a little and said he was 29. LOL Anyway, I found out he has his PhD and at the time he was an instructor at med school (well, he still is, but has been promoted since). So I was like, ok you definitely do not want to talk to me. Generally, at that age I found anyone in their 30's did not want to talk to a stupid kid. So, he said to me, "I didn't say I didn't want to talk to you." We just instantly had all of these things in common. It was crazy, honestly, I think I felt an instant attraction even online. I know that is crazy. Fast forward to say 2003 or so, and one day he goes and says to me, "Ya know? We should go out on a date." Well, that totally freaked me out, I was still in college, I felt I had nothing to offer him. Not to mention, I was living with severe depression, generalized anxiety disorder, panic disorder, and I was agoraphobic, that even extended to not wanting to answer the phone... It was crazy!! Of course, I later found out that all of that crap can go along with having an autoimmune disease. I'm sure I've had these things for years. Well, anyway, I wasn't very hopeful that the depression etc... would lift. I thought I would never graduate from college... all of these things. I did tell Chris about them, and I couldn't understand why he wanted to date me "as is". I would always tell him he should date a "professional woman" someone that was his equal. Someone that was sophisticated...not a broken woman like me, that couldn't move like other women quake and sigh. Ok, and I'm like his total opposite, I'm nerdy/artsy. I'm one of those people on a good day that wears a ring on each finger. So Kimmie, I totally understand about the stiletto thing. At my worst with RA symptoms (I do think I have RA by the way, just that my rheumy doesn't want to diagnose me with it), I would some days have trouble dressing myself. I would wear like sweatpants to school because I didn't have to deal with zippers. Oh, and washing my dog (he is a shih tzu kinda requires a lot of work) I had to have my mom help me. Some days it was way too painful to brush my hair so it would look like crap, I would kinda just tie it back, and then throw a bandana around my head to hide my hideous hair. That is a little window into my life at the time.


    I thought I would have been a burden to him. So, I said, "if I graduate from college, I will go on a date with you." Well, of course that day came. LOL Then I felt like well, I wish I had a job first and all, but I didn't wait that long because I figured I would have pushed him away. So roughly after a month after I graduated from college I met him for the first time. Then at the time I also liked someone else, and he pretended to be even more attracted to me. Another online guy, but I never met him in person. He turned out to be a fake.

   So in my head I was all confused. Then on my dates with Chris, OMG we heated up on the very first date. I thought it went a little too fast. Second date was even hotter, but having RA like symptoms that night didn't help. I tried pleasuring him with my hands (I didn't want to go too far too soon), but anyway because of the way I was feeling within minutes of starting to pleasure him, my hands were in agony, and I couldn't get him anywhere close to well you know. So with all of this confusion, I did want to continue to date him, I just wanted to slow down with the sexual stuff. I needed time to see if we had feelings for each other, and it hurt like heck trying to just pleasure him with my hands, so doing anything with my hands like that was too painful.

   So, he did act like a jerk about it, and he acted like he was all about one thing, and that I was neglecting his needs. And ok, he did pleasure me, but with that stuff, I have such a hard time enjoying it when I don't feel well. So, he was bugging me about taking care of his needs. I was so annoyed, and angry and hurt that I left and never spoke to him again until a yr later. The other guy was a jerk... like I said I never dated him. He never would come to see me, but spoke mushy words which meant nothing. So here, I started talking to Chris again... the whole thing bothered me so that is why I had to explain why I left. He did apologize about acting like a jerk about my hands. He said he didn't realize it at the time.

   Well, just for the record, I did tell him that at the time. I felt badly that I couldn't take care of his needs, and I wanted to date him a little longer to do other more intimate things. For a long time we talked about getting back together. I wanted to start seeing him again just hang out together, build from there. Just even if at most we just kissed each other. Heal past hurts, there are other things that happened and would take too long to type. LOL But suffice to say we both did things that hurt each other, so I wanted to know that we were healed, and had forgiven each other. So, we would meet up, and argue over this point. But honestly, by meeting up and talking again, that is what I was asking of him. So I basically got what I wanted without him realizing it. LOL So, now like I said, we are seeing each other again, and he is way more understanding. And honestly, when I talked to him for years, he always acted like a very compassionate man... with everything I lived with and all. So, I was stunned by his reaction when we first dated.

   I do worry that he will want this other woman more because she is not a broken woman like I am. Another thing is that I gained weight from the psyche meds I took over the years, and I have not lost any of it. So I just don't feel attractive to anyone. When I'm with him, if I could hide in a mumuu that would be the best. Also, I'm sure you guys know I'm finishing my MA thesis. So I have no job. I still feel like I have nothing to offer, but I'm trying to over-come that. Thanks for listening.


Take Care,


Lady Nova :)
Title: Re: Young Yins. Age 25-35?
Post by: arabrablynn on November 08, 2008, 07:45:04 AM
Chris, I like what pud said:
"there is someone for everyone and when the time is right they will present themselves in your life."

Not just people though, that applies to life period!

Diagnosis, Jobs, relationships, .. EVERYTHING.

My motto is "everything happens for a reason".

To everyone on this board. Keep your head up. Our young diagnosis feels unfair but we will learn and grow from it and we're going to make it! Because of us, doctor's are going to learn that this condition does NOT exclude young people. We're going to advance medical knowledge and new treatments are going to be available to us by the time that we get older and our symptoms get worse.

Knowledge is power and, armed with the knowledge of what we have to deal with, we are lucky to be able to better prepare.

I'm signing up for disability insurance next week, for example!
Title: Re: Young Yins. Age 25-35?
Post by: carol55 on November 11, 2008, 08:12:57 AM
I am a mother of a 27 year old daughter with sjorgrens and I am very frightened and worried about the whole thing.  Everytime she goes to the doctor for blood work I am afraid something will be wrong.  I just fear so much for her future.  I never knew this existed either.  Seeing so many of you young people dealing with this is good to know just for my peace of mind if nothing else.
Title: Re: Young Yins. Age 25-35?
Post by: markt on September 12, 2017, 08:09:13 AM
Hi, I am a 30 yr old just recently diagnosed with primary Sjogrens.  It came particularly hard to me as I am a Navy Officer and used to long hrs/demanding work environment... I am facing the fact I will have to change my lifestyle, expectations for myself, diet etc.  At least until I can figure out how best to manage my symptoms (mostly intermittent dry eye, mouth, skin.)  The symptoms really came on all at once, and I had experienced nothing like them in my life.  Lab work ordered by my ophthalmologist (Bowden Eye in Jax) was what brought on the suspicion of Sjogrens...later confirmed by my Rhuemetologist. I just started treatment (prednisone pack, plaquenil & pilocarpine) and am just now returning to a somewhat functional life. Hopefully it only gets better as I learn to manage it. Thanks to all for the great tips, advice, and resources shared here!  Your all in my prayers. - Mark