Author Topic: Have you thought that life with sjs is'nt worth living?  (Read 4616 times)


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Re: Have you thought that life with sjs is'nt worth living?
« Reply #15 on: June 02, 2012, 08:11:15 AM »
Have you thought that life with sjs is'nt worth living?
All the time.  In fact, just before I got on the computer and read this thread I was thinking .... 'I am pretty useless .. I contribute nothing ... I can't work ... I can't really enjoy life like I want to .. I suck up money to pay for food and can't earn anything ... etc etc'.


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Re: Have you thought that life with sjs is'nt worth living?
« Reply #16 on: June 02, 2012, 10:58:37 AM »
GRRRRRRRRR........I just responded with a long but to the point post and I lost it going back to make sure I spelled your names correctly GRRRRRRRRRRRRR!!!

So now my good thoughts for all of you are lost but I will say that Tuurre, Joe and Liz you are in my prayers for your better health.  And although I don't have family Tuurre, I got out of my "pit" believing that I have to live for my dogs and my husband (who btw is in denial).  Yes, dogs are Gods creation of perfection and the most pure form of unconditional love :D

To everyone else who has posted Tuurre with hope.....I wish you a better day today, tomorrow, the next day and forever and ever!

Dx#1:  dx changed to Sicca Syndrome + UCTD (how wonderful)
Dx#2:  Osteoarthritis and high cholesterol
Meds:  my golden retrievers, my doodle, otc tylenol, ibuprofen, mobic, vitamins, omegas, oral pilocarpine, liguid chondroiten/glucosamine with


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Re: Have you thought that life with sjs is'nt worth living?
« Reply #17 on: June 02, 2012, 06:01:15 PM »
Hi Tony!   

I have read your subject title several times and was almost afraid to open it.  I guess I was afraid I would see me!  And yes I did. But it was a good thing!  It is hard to bare your soul and share your innermost thoughts.  Especially on this subject.  No!!!  I am not suicidal either. Not at all, not ever!  So with that out there, yes I have wondered the same thing.  I feel like I am a burden to my loved ones.

Depressed??You bet I am!  But not the kind where I lay in bed all day, every day!  But I do a some of the time.  Fighting the pain and now this oxygen thing.  Never really being diagnosed is a depressing thing for me.  Many of our friends here all have different opinions on that.  For me, I want to know.  I want a name to put on this thing.  It can't have this much power and not have a name.  All my SJS blood work and my lip biopsy came back as a negative.  The Rheumy still feels like I have it.  Does disability care about his opinion??  No!  They want hard core results.  But, I had still been working up till Feb, when I developed this lung condition that has me tethered to a machine now!
I am 53 now and I guess mine got actively bad around the age of 30.  But we keep going, and keeping that old chin up.  I do not mean to disregard anyones feelings or anything, but I get tired of the cliches of "just put on a brave face"  or "put on your big girl panties and deal with it"  I have done that for a long time and yes for the most part it does help.  But you get to a time that you have a question like yours and just want to lay it out there.  I have had that thought millions of times...what kind of life is this?  what kind of life is this for my husband, my children.  I watched my own mother down this path and wished for a happy healthy mom.  Not just for me , but for her!  She seemed so unhappy! 

But for me, Even with all the pains, the expense, the burdens, I do feel like life with sjs is worth living.  I do what I can.  I do things for others.  And though it may not sound like it, I am an encourager. My children, grandchildren, husband and Father love me.  I have joy and I bring joy.  I can share my experiences with others starting down a path of an illness and help them feel calm and hope.  I bring a lot to life.  Many times I have held the hand of a stranger and prayed with them, laughed with them and cried with them.  My life does have meaning.  Even while I am in the hospital or in a lab having blood drawn, I can say something silly and make just one person smile of laugh, a child giggle, because I can wiggle my ears, then it is worth it.  I have a mission.  A mission that in spite of this lousy, crappy, illness, I can still help somebody. I may not can scrub my own floor but I can make someone smile. 

That said, I still do admit to the thought of at 53, what will I be like 1t 63, 73?  Will I live that long..will I be more shackled than I am now.  Will my family be limited because of my limitations.  I don't know.  But I know that I will do everything in my power to give them the freedom to come and go in their own lives without feeling the need to hang around and take care of me.  What will bring me the most joy is for them to get on with their own lives.  And , THE BIG AND..that they not have this same horrific "syndrome".  And yes I have other things wrong, but I got a lot right too!!!

 I often love to hate those sugary quotes on life is what you make it.  My Life is not what I make it.  My life is what sjs has made it.  I had no control over that.  But I can tell you, My life is still mine and I get up out of bed and move forward.  I look forward to hearing my grandchildren giggle and see my children smile and hear my husbands voice.

  Your question is so legitimate and I applaud you for asking it.  You show your own strength by going there.  No one here will disregard that.  You are free to express whatever concerns that you may have.  We do not all have to agree, but everybody here will support you.  This is THE BEST support group, forum, whatever you want to call is THE BEST
Love all you guys and Thanks for the helping hand you offer so openly!     ~sass~


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Re: Have you thought that life with sjs is'nt worth living?
« Reply #18 on: June 03, 2012, 10:42:12 AM »
Soo tired and nervous for tomorrow!

Thanks Pie Joe Liz Gold Sass

Sass your post was wonderful, i can rely to a lot but being 26 when getting ill it's so much sorrow at the moment, being 40 and i'm sure of that crappy lymphoma issue, if it just would be living with sjs i could take it but living with the fear 24/7 feeling like a stranger in your own body with no own family to support, it's tough.

Hugs to you all.....

/ Tony


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Re: Have you thought that life with sjs is'nt worth living?
« Reply #19 on: June 03, 2012, 11:39:13 AM »
Just wanted to wish you good luck tomorrow Tony,  I'll be thinking of you and hope you get some answers and some relief.

I also wanted to share with you about Lymphoma...My aunt was diagnosed with lymphoma back in the 1970's.  It was in her abdomen, groin, neck, all over the place and she went through chemo and radiation (that was how they treated it back then).  She went into remission and lived until 2006, she was 83 years old when she passed away.  It was hard for her going through the treatment, but she had a long full life afterwards, and this was back when many people didn't survive Lymphoma, they are much better at treating it now.  Just wanted to give you some hope to grasp onto.  She was a very hopeful and positive person and I believe that helps us deal with things like this. 

I hope your appointment goes well, you get some answers and most importantly appropriate treatment!  Good Luck!



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Re: Have you thought that life with sjs is'nt worth living?
« Reply #20 on: June 03, 2012, 01:18:45 PM »
  The age thing really is an issue.   I am 61 and am a former businessman, mentor to young people and long-time coach.  This SJS is very very difficult.   I have tried and tried to slow down.  I am now being forced to.   I still walk briskly for an hour every morning but it is often mind over matter.   The pain, discomfort, fatigue and blasted tinnitis make life tough.  And,, my 18 year old son does not help, lol.  But, the age thing really is an issue.  It is so very metally tough to slow down.  It makes life hard.

I feel bad for all of you in here and fully understand what you are going through.  I am blessed with a terrific wife who really understands and a wonderful rheumy doc.


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Re: Have you thought that life with sjs is'nt worth living?
« Reply #21 on: June 03, 2012, 05:25:37 PM »
I sometimes get into the funk not so much about the physical impairments with sjogren's (and scleroderma), although I do that too, but more the mental and emotional impairments.  I have no patience anymore, and a short temper, and I often feel it isn't fair to my family for me to be this way.  I used to be a much nicer person. I've become so much more bitter, maybe because of the unending fatigue.  Anyways, I was just thinking today about whether sometimes they'd do better without me but what stops me in my thoughts is never wanting to put them through that sort of pain and sorrow.


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Re: Have you thought that life with sjs is'nt worth living?
« Reply #22 on: June 03, 2012, 08:54:20 PM »
Good Luck Tony!!  Will Be thinking of you with a Prayer being sent up for you too.  I see my pulmonary doc tomorrow for results too.   PS  where are you from?     It helps me focus to know.               sass


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Re: Have you thought that life with sjs is'nt worth living?
« Reply #23 on: June 05, 2012, 06:35:28 PM »
Well done for writing this post. I know positivity is important in fighting chronic illness, but sometimes it just makes me feel worse. You can?t talk yourself into feeling something you don?t, I think sometimes you just need or want to vent!!

I know where you are coming from. Although my symptoms are not as bad as yours, I have extreme fatigue and weakness that affects every aspect of my life. If I overdo it, or have a stressful day, I get severe migraines and can?t function at all for days. Like you, I was diagnosed young, at 24 and at the time was in University, successfully completing a course I loved. 6 years later, I had to drop out of my course as it was too demanding. I got little support from my institute, fell out with many of my supervisors and fellow students (I?m sure they consider me as unreliable) so I feel like I burned my bridges there and can?t go back, even if I wanted to. I can?t find a suitable job so money is a huge and continuing worry for me. I feel that many of my family and friends have no understanding of what life is like for me, their attitude is: you just have to get on with it, things can?t be that bad. Most are like- you?re always sick, or are you STILL sick??!? I feel like such a complete failure. Despite all this, for me, the hardest thing to deal with is the envy I feel toward my healthy friends and family. I see how they have moved on, finished their education and gotten great jobs, while I?m trapped in the past. We have little in common anymore. I hate feeling like this and really feel selfish, it?s not like I wish them anything bad, but I see the way things work out for other people and can?t help feeling jealous and angry! I wish I knew how to deal with these feelings.

On a non-personal note, I noticed on your post that you mentioned pets- I have 3 dogs and sometimes they are the only thing that can cheer me up. I know it is small consolation, but animals love you unconditionally and can be a real crutch. I hope you can have at least this small comfort. I?m so sorry that you have had such a long and difficult journey. I hope that there is some relief in sight for you with your new doctor. Best of luck- Let us know how you get on.


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Re: Have you thought that life with sjs is'nt worth living?
« Reply #24 on: June 07, 2012, 11:34:02 AM »

I'm crushed the rheuma rejected me and she does'nt listen to my symptoms i have a constant high esr rate and no tears at all and all these other 30-40 symptoms but cause the lip biopsi turning out negative i'm not getting any help from the medical system. I'm devastated!
Dont know what to do?

I'm from Sweden Sass and thanks for sharing and supporting

Thanks Nancy for the comforting thing about lymphoma.

Amberjolie1 know what you mean and especially i know what You Pmod2009 mean it was like you were talking about me, feel that aswell feeling disconnected to others and envy everything, all the things that were normal, like i was an elite soccerplayer and had to quit when i got ill at the age of 26. But nowadays i envy small stuff, going to a work, or just the fact that hearing, vision, touching things and feel the way they felt before getting polyneuropathy, i would pay a fortune to get a day of  "ordinary life" not feeling like an alien in this body.

Thanks all wish the best for you aswell

Hugs Tony


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Re: Have you thought that life with sjs is'nt worth living?
« Reply #25 on: June 07, 2012, 01:02:52 PM »
 :'( Yes, that crosses my mind.  Usually briefly.  Like you it took many years of pain and confusion to even put a name to my discomfort.  Worst of all, the depression was what the health professionals decided to focus on and I had very little success with their remedies for it.  Most of them simply made me feel worse.  I find it odd that one of the side effects listed for antidepressants is depression.  LOL  Nevertheless, just getting a diagnosis and treatment options has been uplifting even if it hasn't been enough time to work fully yet.  Also, now that more time has passed, I recently found out there is a specific neurological reason so many of the antidepressants caused further depression.  Hopefully, in a week or two the new option will arrive and some relief will come from it in the following months.  I feel more hopeful just having an option even if there are limited ones due to this little quirky brain I have.  LOL 

From one of my favorite movies-- Young Frankenstien with Gene Wilder.
Dr. Frederick Frankenstein: Ah! Very good. Would you mind telling me whose brain I DID put in?
Igor: Then you won't be angry?
Dr. Frederick Frankenstein: I will NOT be angry.
Igor: Abby someone.
Dr. Frederick Frankenstein: [pause, then] Abby someone. Abby who?
Igor: Abby... Normal.
Dr. Frederick Frankenstein: [pause, then] Abby Normal?
Igor: I'm almost sure that was the name.
Dr. Frederick Frankenstein: [chuckles, then] Are you saying that I put an abnormal brain into a seven and a half foot long, fifty-four inch wide GORILLA?
[grabs Igor and starts throttling him]

Humor is my best friend throughout all of it ;D.  I don't know if I would have survived this long without my best friend.  It's kept me company even when other people let me down out of ignorance or misinformation.  It's helped me win some of them back.  I highly recommend the use of humor in every aspect of life but especially when you are confronted with seemingly insurmountable odds.  Laugh your butt off!  It not only works out some muscle tension... if you do it long enough you even generate a few extra tears and everyone with Sjogrens needs that...  Maybe that's why they call it Show-grins... you gotta grin and bear it, you gotta show people you can grin, and we gotta keep each other grinning to give ourselves a reason to keep chugging along this rocky road. 

My father used to say all the time, "What's the world come to if a fart isn't funny anymore."  I try to think of those depressing times when I question my existence as gas pains.  Mainly, because they are usually accompanied by severe bouts of physical pain... but also because the pressure builds, I think stinky thoughts, I blow a little hot air at the people I love, they don't like that much, but eventually it passes and I feel much better for a short while.  It's easy to forget those good times as bad as the bad ones are.  Granted the bad returns.  But maybe its a natural process and we shouldn't turn our nose up at it.  Or at the very least, it does about as much good to turn your nose up at it as it does to get bent out of shape about farts.  Better to just go on without judging yourself by the low points especially when if you are like me you have more lows than highs these days.

Today I try not to hold myself up to the yardstick that others have.  My value is not in my ability to work, earn alot of money, be productive in the sense that other people claim to be.  My value is in what I can offer to those of us who have a tougher row to hoe and in how well I can represent to those people who don't have our special experience why they should open their minds to our potential but different value as well.  That is best described by a buddy of mine who told me, "if you can get thru what you are going thru then I can definitely get thru what I'm going thru."  It's not exactly the example I wanted to be.... an example of the trials and tribulations of the human spirit... but hey we all have to play the cards we've been dealt.  And I got a stinky hand.  But I can laugh about it on good days and on bad days I try to hold on to the fact the bad days pass just like farts.  GG


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Re: Have you thought that life with sjs is'nt worth living?
« Reply #26 on: June 14, 2012, 12:51:07 PM »

Ashewoman it?s nice to hear that you look at it from the positive side, i?m not able to do that at the moment maybe further ahead.

To many disabilities to accept, thats the way i feel right now. I know it?s bad for anyone to victimise yourself but right now life really Sxxxxxcks!

Take care