U ever feel like u are just waiting around to die???

[karleesgranny]

Now before yall start thinking of calling the suicide hotline....I'm not suicidal I'm just tired...tired of waking up to the same pain...tired of going to bed with the same pain and not being able to sleep... it's like waking up to the same nightmare everyday...everybody that don't live this life either look at you like your a hypochondriac and lazy or they want to say stuff like we'll if you lost some weight you would feel better or if you would exercise you would feel better...I mean come on y does everybody either think they can give you the answer to your problems in one sentence or they think you are fake...so I stay at home away from everybody so I can just hurt in peace.. like I said waiting to die...rant over thanks for reading...

[machenza]

I do,

Not there yet, but I understand you. When the time comes, I will be ready, and NO, I am not afraid to face it. However, I hope I will get lucky at list in that and go fast, and with little pain.

Only 100 years ago people only lived around 50 years on average

I pray for you.
For us

Nellie

[finallyadx]

Karleesgranny - so very sorry to hear you feel so sad and depressed and in so much pain.  Yes I can relate and I definitely have days where I feel like I am just "waiting around to die" and sometimes I feel like "is this it" "is this what I was meant to do and be" on this earth?  And then I have a "better" day where I do  not feel so much pain and I can actually accomplish some things and enjoy life and my family and then I do not feel so desperate or alone.

We have ALL been there and done that - and I am so very sorry you are now there.  I am no expert, so please do not take this as me telling you what to do...just a suggestion or possibly something to look into...I notice you take some antidepressant medication(s) - have you had those levels evaluated to see if possibly they have stopped working or need an adjustment of some sort?  Also are you taking medications for pain management at all?  And if so, have those been changed recently or evaluated? 

It sounds to me that you need more supportive, loving and understanding folks in your life.  We are here for you to listen and offer kind words.

Again, I can relate and I can totally understand with your feelings...I hope you can find some hope, strength and encouragement. 

I am sending you positive thoughts and prayers.

Keep us posted.

[gurs]

Chronic suffering is horrible...if people only knew what we go through...we are the true warriors!!!!! I often wished I would have
gotten something that was a "fix". It makes me laugh when people with severe illness can sometimes get their life back..we, or most of us cannot. Some of us suffer a lot more as well. Years ago my SS was manageable, but its so bad, I cant imagine what the years ahead will bring? I just try and look forward to something that might help..keep moving and motivated.

Some people do very well on antidepressants..talk to your doc. Hang in there!!

Gursie

[eija]

Yep.
Right now.
So sorry.

[DryGuy]

Gurs, how long have you had SjS for?  I'm admittedly depressed and just started antidepressants a little over a week ago.  I'm just about to start my career and got hit with this, sometimes I wish I would have died in a car accident or something instead.  It really hurts me to think like that but I'm afraid of what the future is going to be like and 1 yr ago I was so excited for my future.  Depressing I know...

[cccourt1942]

/quote]

Me too....but one year ago I knew that something was different.  I had been in NYC with lifelong friends in mid March...and while walking my mouth was so dry I couldn't breathe.  Drank water constantly.  This was the first time I noticed the dry mouth except in the middle of the night or upon waking.  I thought it was what it was like when you were old.  I purposefully took three more trips last year.  I think I had a premonition.   

Now?  I can understand what granny is saying.  I mean, we all die.  That isn't it...it's the difficulty of living.  As she stated, no one is thinking suicide.  EVERYONE is thinking death ain't so bad a thought.  That's all. 

[lolo1979]

Not me...in fact, just the opposite. I am terrified of dying and have major death anxiety. I want to be here for my family and children as long as possible, and live as full a life as I can muster with this disease. 

I will concede that sometimes I feel like a sitting duck, lying in wait for the next autoimmune disease and/or other health issue to crop up. But I am determined to do whatever I can to fight this off.  I know that I might not be successful, but I feel like I have no other option but to try.

If you are feeling that miserable right now, I would encourage you to have that discussion with your doc. Do some internet research. See if there are any other meds you could try.  See if your doc is willing to be more aggressive, maybe even up to something like Rituxan. 

There are also other AI medications just getting approved and/or just around the corner from getting approved, so that should also provide some comfort and hope that we are moving in the right direction.  A new psoriasis medication just got approved in the last month - it is a PDE4 (enzyme) inhibitor that helps modulate the immune response.  Aso an IL-17 antibody medication in phase III trials right now. That one is also starting with approval to treat psoriasis, but will likely also be effective in other AI diseases (IL-17 is a known inflammatory cytokine implicated in pretty much every autoimmune disease). That one is called secukinumab, and I think it's Novartis that is developing it.

I think they start by testing these medications in psoriasis because it is one of the more visible AI diseases, and thus easier to objectively determine efficacy and results.  But ultimately I guarantee you these medications will be tested in other AI diseases and eventually there will be something else available to help us.

Don't give up!!

[kimberly64]

Karlessgranny,
I feel this everyday and have told my husband this. Its hard living each day when your symptoms control your day and are always there.  Living is hard but I dont want to die but I want peace and happiness again.
Kimberly 

[Tivia]

I am getting worse because of where I live there isnt much in the way of treatment. I can barely eat now, and I am sick and fatigued everyday. The dryness is worse but I dont really notice it anymore with all the other ills I am having. I hate that I fill pill cases now so I can rem if I took them since I take so many. The thought of continuing to have to take pills for the rest of my life to live makes me want to just stop.

Up till a few years ago my life was stable...what happened?  I am not living life anymore, there seems to be no happiness in life anymore. The thought that hey as we get older and time moves on the illnesses we have will also move ahead. Great I should be on a feeding tube by next year.  I think everyday why bother, but I am scared to die. I want to live because I have some crazy hope they will find a cure, or it will all go away. The reality is they wont and it wont. At my GI doctors yesterday discussing an upcoming procedure to maybe widen my esophagus. She asked if the dryness is progressing..then made a comment of...I think I am getting a touch of that.

Is there such a thing as a touch of sjogrens lol man doctors so flippant

[sassygal]

Karleesgranny, I could have written the same post!

CCCourt, you put it so well... the difficulty of living with sjogrens!

Tivia, isn't it amazing at the stupid stuff people say to people with chronic illness. I once had someone tell me "oh, I have a little bit of fibromyalgia in my back too"! ? Can you get "only a little bit"? LOL I guess if you can get a touch of sjogrens you can get a little bit of fibromyalgia and maybe
a dash of RA as well and call it the lighter side of AI's!

sassygal

[1722Mich]

Karleesgranny....I think you have come to the right place.  I find this message board more helpful than anything I've ever come across.  Just hearing from others going through the same things, getting their support and finding out that perhaps some of it they've gotten over (sad feelings) is invaluable!  This site gives us hope and without hope there is nothing.

I think every one of us has had days where we want to just curl up, cry and "eat worms".  On those days it is more important than ever to get on this site and vent or just read the postings.  I try to make it a daily thing.  I get on here and just cry and thank God that "at least I don't have that" or "at least my (symptom) isn't as bad as that".  It helps me keep my complaints in perspective.  No matter how bad your symptoms are, someone out there has it worse and would happily trade places.  Not trying to sound heartless here.  Just want you to see that no matter how bad it is, it could be worse and since it isn't rejoice in what you do have.

Every day above the dirt is a good day.  Not saying you aren't allow to wallow once in a while.  I think there is a bit of healing in a good wallow.  Just don't dwell because tomorrow is yet another new day, an opportunity for things to get better.  Be stubborn.  Cling to the hope and don't let your symptoms define who you are.  For example, I have Sjogrens but I am NOT SJOGRENS.  I am a wife, a mother, a shepherdess, a nurse, a writer, a friend and a formidable adversary when the need arises. 

Yes I hurt.  Yes I have days where I am so dog tired that I can barely function.  I have many days where I am so physically weak I can barely brush my hair.  I absolutely hate those days and they drag me down like anchors.  I have days where my family tease me for being tired...."What do you have to be tired for?  You just got out of bed."  "It's only noon and you need a nap?"  "Why can't you clean this house?"  Their expectations are more lead weights to drag me under.  It would be so easy to just succumb.  To just crawl into my bed and let life go on without me.  It is a slippery and enticing slope.

No matter how bad it gets though, you have to hang on.  Be kind to yourself on the bad days.  Don't listen to those outside voices who criticize.  You live in that body and know your limits.  If you are tired, be tired not guilty.  Your illness may not be visible but we all know only too well that it does exist and it is tireless in its ability to impose limits and throw up obstacles.  Be water and go with the flow.  Water eventually wears a path even through the hardest stone.  Do what you can and rejoice in each moment of success.  On the bad days, rest, recharge and strategize.  Keep fighting.  You are a wonderful person with much to contribute.  I am sure you are still here for a reason. 

Big hugs!

[ammasgirl]

Karleesgranny- I notice that you are on prednisolone, which of course, makes sense to control your symptoms, but I wonder if it could be making your depression worse. My mother-in-law had been on predisone for over two years for severe arthritis when it started to cause terrible mood issues. This was confirmed as the cause when it resolved as she was tapered off the drug. Of course, the depression makes sense, but perhaps your meds need some adjusting.

Please hang in there and know that better days will come and hopefully much better treatments are right around the corner. I am so sorry that you don't feel like you are not getting all the support you need. I understand when some people say that they have suffered more with Sjogren's than they did when they had cancer and were undergoing chemo. People just don't seem to understand how serious this can be. It's not just dry mouth; it's endless fatigue and pain and new mystery symptoms every day. I hope you can make your family understand that you need empathy and support- why on earth would anyone want to spend their days unable to function if they had a choice?

[gurs]

Dryguy,

Ive had sjogrens almost my entire life...diagnosed at age 13, but I think it started even earlier than that. My mom said as a baby/child, I slept all the time. Im also now remembering how in grade school, I had my head on my desk most of time, and my stomach issues started way back then too. The mild gastroparesis even.

I still was able to live a semi-normal life. I started on plaquenil in my 20's, and that helped a lot. There is also a tons of other medications I would also give a whirl too..some of them can really help. I love the natural route and take tons of supplements,
but found that I need actual "medicines" to help me as well..the supplements were not slowing down the progression of my disease, and this clearly became evident to me when I stopped plaquenil, and within 3 months, I started having severe neuro issues and my SS went haywire. Its super important to find a good rheumy. It doesn't mean to have to go to a top hospital or anything, as I learned, they
seem to help the least with me anyways. A lot of us also have multiple AI issues, plus a host of other things too. We all need different treatments.

Sounds like you are young, so please don't just "give in"..try to focus on finding a treatment that works for you...believe me...I tried a few medications that really seem to help, but, because of my severe systemic yeast, I had major issues and had to stop them.

Just hang in there and take it each at a time.

Take care,

Gursie

[Cassi307]

This is quite timely topic. Death has been on my mind a lot lately. I am 62 having my first anniversary with the Sjogren's diagnosis. I have had symptoms for years. This past year has been very difficult for me. I never feel well. I have difficulty standing and walking. The fatigue is hard to manage. The dryness is not much of an obstacle and I don't think about it much. And I just found out I have hardening of the artery in my brain. The prospect of dialysis now that I am 4th stage.

I do think a lot about the quality of life that I miss. I gave up a job that I really loved and now do clerical work which I really don't love. But at least I can work a little bit. I realize that at this point I'm probably depressed from trying to stuff it and live with all the negative aspects of this disease. I constantly lie and tell people I am fine. I struggle to keep up with my son sports activities. I have no other family to help and my brother in Ohio doesn't seem to get it. I have one friend from this board that I am very grateful for because she has pulled me up more than a few times and I thank her for that. But isn't that the point of this board?

For me death is a release from this misery. There's so many more important things to do though. Right now I am looking to get my son thru college and hopefully into his first lasting relationship. I have pets that I intend to outlive. There's more than one way to be released from misery and that's to pursue a treatment for a better quality of life. I want to wake up tomorrow and the day after. In between better days will come.

I hope that you find that sliver of light to get you through this. This is a very tiring diagnosis. Hang in there.



J