just need to unload.

[sass]

oh my, oh my...i hate to be a complainer..as the world probably already knows i do far too much of that.  I really do know that all this is not all about me..it is not..but i just can't get beyond the pain and loneliness that happens when you go through this.  My entire body hurts already from this wretched Sjogren's.  Every muscle, Every fiber of my being.

And then we throw in the other illnesses, of the pain of swallowing from Esophageal Motility, etc etc...just to many to list anyway and who really cares!  Not a question, a statement.  All from Sjogren's.

Then you feel like you get your teeth kicked in time and time again...yet you continue..and then you suddenly are told you have more...and this time it is terminal....you get lucky enough to get SSD because it is..Compassionate Care they call it..With no care involved whatsoever..You still have to wait 2 yrs to "qualify" for medical care...

So, you still try to encourage others, but you get slammed here and there..
I really do not mean to sound so bitter.  I just hurt so badly.  That is not your fault.  I will be told that I need some help..that which can not be offered here..which may be true..but sadly with a new $5000.00 deductible to meet, will not be happening.  I do not need help with Depression..I need help with what is causing the depression..and that is Sjogren's.

I have always tried to inspire and i feel that I will let a vast majority of you down in this post..I am so sorry..i really am..please forgive me..but I can no longer bear the burden...Let me get this very, very clear though..I will not, nor every will  in any way form or fashion take my own life..so ease any concern that you may have there..

I just have to unload and maybe get some feedback..please do not tell me to go get help for my depression..i have already talked with all my doctors about it.....

[4Kids]

Hugs hugs and more hugs.

there is a website for "go fund me" where people fund raise to get all help for stuff. I have no idea if you would consider such a thing but I would help out with that deductible. Here in canada we do not face those choices, it is ridiculous that the US makes people go through this.

We have been without insurance for almost 3 months. I need dental (not covered), some prescriptions (not covered, I get the cheap ones) and my son needs glasses.  I do not consider this a hardship, we are waiting so please don't think I am comparing myself. But to imagine what you are going through (compared to my little plight) makes my heart hurt.

I am so sorry.

Jackie

[sass]

no, no, no  Jackie..please I am sorry...not worried about all that..it is not about the insurance not the money..that too is an issue..but it is the pain...and no I would never ever ever consider..thank you for your sweetness..I deleted some of what i typed so I guess it turned out wrong...i just needed to unload myself...of this inside me...unfair of me to ..but again i am so sorry.

[SjoDry]

Oh Sass..

I am so sorry for you. We all get to that place...the place that makes you feel like giving up because you are just so worn down from it all.
I frequent that place. Those are truly the hardest days to keep on, keeping on. But what choice do we have, right. And yes...suicide is not an option, though
we have those fleeting moments. No..we're not on the ledge...and would never act on that kind of thought...but an escape from the relentless ravages of Sjogrens
even for awhile would be such a gift. 

We all know how you are feeling, because we are living it also.  Pain is such an intruder into our lives. It can take even the most sane of us
and turn us into people worthy of a flaming DSM IV diagnosis. I don't have any feel good answers, because there are none. This illness sucks...some days more than others (if that is possible).
I have found that through the years on my really horrible (fetal position in bed days), that I can escape with Lifetime movies and CHOCOLATE! I tell myself that if I can just get through the horribly, sucky day...that the next day will be better. And usually..I am right...the next day usually is or seems better. I guess on my really bad days...if I hang onto that hope...it gets me through some of my worst moments.  Either rightly or wrongly, it is my "worst moments' coping strategy. BTW...I can even rationalize that dark chocolate is good for me 

You don't need to feel bad about letting anyone down...this site is for your support as well as ours. We are here to help and lift each other up.. in bad and in better moments. Please know that there are some better moments ahead and we are here for you 
SjoDry

[susanep]

Sass letting out how you are feeling is a good thing to do. It is like a bucket that water keeps slowly dripping into until one day it is full and needs emptying.

We are all here to listen, and let you know we care, and help you empty your bucket so it can start all over again catching all the day to day stuff.

Hang in there. You are a blessing to everyone.

susanep

[quietdynamics]

Sass, I am lucky.
Taking Cymbalta for Fibro deals with Depression. Does not take it away ... just lessens both...numbs both.

When I lived in the Northern part of the state with less medical access...and the long trips...feeling like a 'ping-pong' ball being batted about... it was overwhelming to me; just beyond comprehension that in our Top Rated country Drs. could not find answers. I mean I watched people from other countries being flown in here for free care, top politicians getting better after devastating incidences... so what was 'I' doing wrong?

And I was told by the original GP ....SJS/Lupus (original Dx) can have an 'active' normal life. I thought to myself "what planet are you from?" But, since I had read this same exact statement on the net, I did tell him "Some people should stay off the computer!"...LOL.  Felt good.

It feels so hopeless.  I felt like life was like in the old cartoons. An image of a calender with the pages/days flying away. Next thing I knew 4 years gone... my daughter went from 13 to 17 and I was there, but I wasn't.

Unloading is good.

[bloodless]

Unload all you want. No apology necessary. We know what you mean. If you try to unload to friends in family, they just don't get it. Or worse they get annoyed by your complaining or overreact and think they can rush to the er to fix it. This is definitely the place you can share without all that.

[sass]

i don't know, but being told you have a lung disease that is considered fatal on top of all these other issues..have brought me to a whole new level..one that is not pleasant..I have been sobbing uncontrollably for days on and off..earlier this morning has been one of those times..   Even the stuff I deleted,  i felt guilty so i would not post.

the chocolates and a movie would be nice, but i cannot even concentrate on that..i have quit watching TV..I have no escape..my friends are all gone.....Reading about Kamie and seeing the post about a Memorial..is just more hitting home for me..

Sjogren's is wicked..

[lighthouse33]

Sass, I'm sorry you are having to go through all of this.  Suffering chronic pain is so hard on the mind and body.  It helps to post about it and have people that understand. 

I've been reading on my Kindle a book entitled "Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness."  It is very inspiring.  I've even purchased the workbook and CD's that go with it.

Sometimes the only way I can lessen the pain is to meditate.

[susan]

Sass,

I think this is one place where we can say anything, and can be understood, and not judged.

There is no need for you to apologize about anything !!!

It sounds as if your pain is severe, and you have been patient for a long time. One can only bear so much without some sort of release of the anguish. Venting here helps some.

Wish I could do something tangible to relieve your pain.

[CMNK12]

SASS,
  You don't ever have to apologize for your feelings. Sometimes it is just too much, overwhelming and unbearable. I have just begun the fight and you are my inspiration. So don't loose faith or think that you are useless.
   In Dec I was put on LOA because of progressive shortness of breath and cough. My meds have been changed to high dose prednisone and cellcept for pulmonary inflammation of some kind. I am not better...showering is an effort these days. I can't do basic things without feeling like I am breathing through a straw if that makes sense. I am tired and frustrated and somedays i get down right mad. I feel sorry for myself. I spent my life ,prior to sjogrens, exercising,eating right,working hard and doing all the right things....Now look at me!HA! Makes me want to scream like a crazy person.
  I say all of this to say you are not alone. I worry about my job..already have my termination date(after 20 years of employment)nice!
  So shout to us, to me..I will listen. You are human. Feel what you feel.
Get those doctors to treat your pain.. there are pain specialists. Chronic pain is horrible. Please , please get those doctors to help you. I am praying for you. Ck

[sass]

thank you all so very much for your outstretched hands..I had to respond for now..but it is more than i can handle at this very moment..i will check back in later this evening...thank you all again very much.   you have all touched me very much indeed...some say i am being dramatic..but i am not...the hurt i have is from within as much from the chronic pain...it is my soul that hurts

[Sleepy In Seattle]

Sass, I am SO SORRY that this (*&^%$ disease is trying to crush the life out of you...I know it feels that way! What a nightmare - I cannot imagine what all you are dealing with. I wish I could do something to help - I know we all do, from your friends to your doctors to your family to your neighbors...

It just flat-out sucks all around.

You are not a burden here - I am amazed at your honesty and wit. Somebody should collect your posts and turn them into a book. You are honest and sometimes very raw, and to let other people see that is a gift, not a burden. I hope that sharing those things here helps you in some way...I am SURE it helps others. Most of us are not brave enough to write so openly of our fears and struggles - but reading about yours gives a lot of people strength.

I don't know what caused your pain in this particular case...I have not kept up with all the forum threads...but it sounds like people were concerned about depression. We're not psychologists or psychiatrists (well, maybe some of us are, but we're not in that role here, anyway...), but we are an open ear. A concerned one!

We do what we can in this life - for ourselves and for others. That's all we can do. A kind word, an open ear. We can't control everything - or even, sometimes, ANY thing, LOL...

Anyway - for what it's worth, I really enjoy your posts and think of you often, sending love and healing as much as I can.

[sass]

okay, i want everyone to know how much i love you..I can't keep doing this to you guys though..I was raised on guilt..lol..and it will follow me forever...i hate hate hate the idea that i am unloading on you...enough is enough...happy threads..

[susanep]

Sass some of us here consider it an honor that you trust us enough to share your feelings with us.

Also, you said you have terminal lung disease. Do you know what it is called?

susanep