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.....
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
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.
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
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 :)
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.
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.
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..
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.
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.
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
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
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.
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..
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 :)
Quote from: sass on January 11, 2013, 10:06:00 PM
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..
The Jewish version of guilt, or the Catholic? :D
Seriously, we are here to help each other. And how can we help you if you don't share the bad as well as the good? We know you are carrying a very heavy burden, and we want to help you carry it to the extent that we can. But you have to be willing to share!
Hugs, Sharon II
The my momma's gonna guilt me to death and whip the tar out of me.Southern style about everything till i just stayed home version!
The name of my lung disease is OBLITERATIVE BRONCHIOLITIS-Mine has been definitely been proven to be a complication and caused by Sjogren's syndrome by The Mayo Clinic in Scottsdale AZ..THIS IS NOT COPD or BOOP! I am on oxygen almost always..I also have a back and neck issue that have and are causing me a lot of pain. I have been to Pain Management and had an injection recently..it helped for a bit and now is back..I have pain medication also..but as you can imagine with my disease they do not want me to be knocked out..I cannot have anesthesia, my docs say that my lungs would not be able to handle it..so i fear what happens if i am in the need for surgery??..they say again,,i can not have.
ALTERNATE NAMES
Bronchiolitis Obliterans; Constrictive Bronchiolitis
DESCRIPTION
Obliterative Bronchiolitis (OB) is a rare, irreversible, life-threatening form of interstitial lung disease that occurs when the small airway branches of the lungs (bronchioles) are compressed and narrowed by scar tissue (fibrosis) and inflammation. Extensive scarring results in decreased lung function. Causes of OB include collagen vascular disease, organ transplant rejection, viral infections, drug reactions, prematurity complications, rheumatoid arthritis, oral emergency medicines (for example, activated charcoal), exposure to toxic fumes (for example, diacetyl, sulfur dioxide, ammonia, chlorine, mustard gas, ozone), and idiopathic (no known cause). Symptoms of OB include coughing (usually without phlegm), shortness of breath on exertion, wheezing, fever, night sweats, weight loss, frequent or persistent eye, nose, and throat or skin irritation.
OB is not the same disorder as bronchiolitis obliterans organizing pneumonia (BOOP), which is a treatable disorder with a favorable prognosis. OB is also a distinctly different disorder than pediatric bronchiolitis, which is a very common childhood respiratory illness with a good prognosis.
DIAGNOSTIC TESTING, PHYSICAL FINDINGS, AND ICD-9-CM CODING
Diagnostic testing: OB can only be definitely diagnosed by a lung biopsy. Other diagnostic testing for OB includes lung volume assessments and chest x-ray with evidence of hyperinflation; and high resolution computerized tomography (CT) of the chest at full inspiration and expiration showing evidence of heterogeneous air trapping, mosaic attenuation, bronchial wall thickening, cylindrical bronchiectasis, or scattered ground glass opacities. Spirometry may show airway obstruction or restriction that is generally unresponsive to bronchodilators. OB can only be definitely diagnosed by a lung biopsy.
ICD-9: 491.8
ONSET AND PROGRESSION
The progression of OB varies from person to person with symptoms starting either gradually or suddenly. Two to eight weeks after a respiratory illness or exposure to toxic fumes, dry cough, shortness of breath (especially on exertion), fatigue, and wheezing may occur. Severe cases often require a lung transplant. Post-lung transplantation, OB continues to be a major life-threatening complication, affecting up to 50-60% of people who survive five years after transplantation.
TREATMENT
There is currently no cure for OB. Bronchodilators, inhaled corticosteroids, oxygen supplementation, and, in the case of lung transplantation, immunosuppressants, are prescribed to control symptoms. Response to treatment is generally poor.
My dear sweet Sass:
I just hate what this terrible disease has done to you. You have never done anything to deserve all the pain and suffering that has been placed in such a heavy way on your shoulders and I wish I had words to take this awfulness out of your life and body.
I want you to know that I often think of you with very appreciative thoughts of the many times that you were there thru my own struggles and I am always so very grateful for who you are and I am sure that all of us who have benefited from your kindness and caring feel the same. You never need to apologize for anything in my book and certainly not for sharing what you are going thru right now in battling this horrible disease.
Hugs and love,
Daisy
Thank you Daisy, I so enjoy reading yours and everyones sweet post..I had not read yours before i sent you a message, an d was pleasantly surprised ti have on waiting on me...
Your words are so endearing to me...thank you so much ~sass~
Sass I am glad you are able to talk about your pain. Where else can we do that? Hang in there and keeping yapping.
;)
sass, I hear your pain too and you are most certainly justified in your whining, complaining, whatever you want to call it.- There ain't no momma here who is going to tell you to "stuff it."
You can vent all you want and never, ever feel guilty about it. You are entitled to vent and say whatever you want. We are all here to listen and though it is hard to understand completely, we can certainly imagine how hard this is.
I don't have any answers for you. Like everything else on this earth lately, there are more problems than there are answers. I don't know if it was always this way, but things have gotten so complicated. The more we know about something, the more we find out what could be done but isn't and won't, the more confused and helpless one feels.
It sure sounds like pain control would really help you a lot. Is there anyway to do some nerve blocks that might curb the pain but not interfere with your respiration.-- I would think that you have had more suggestions and ideas brought to your attention and nothing is of any use. That is the sad part of you illness.
Have you tried Marinol which is an oral marijuna. I gave it years ago to a fellow in hospice who had such bad pain and nausea. It helped him a lot. Hard to do at that time as only one doc would write the script and don't even know who filled the script. I don't know what the options are for oral drugs in this day and age. With all the technology that is going on in the world you would think that pain control would be top notch, but it is still a huge problem.
Please keep on going. Cry all you want and do anything you can or want to do that you will enjoy. Life is short---but the pain makes yours feel really long. Have you considered acupunture??? I have seen movies( from medical people who traveled to China) of people who had surgery while using acupuncture. Thyroid surgery and gallbladder. Unbelievable. My prayers are will you girl. Hugs Irish
Sass
It is always good to see you post here. It doesnt matter if you are venting...thats why we are all here..so we can vent or have a hissy fit where we wont be judged and we are understood! you have given all of us so much support and love-its our turn to recprocate so sit back and soak in the love.
I am so very sorry that you are in so much pain. Has your state passed a medical marijuana bill? If so look into it. The dispensaries offer it in many forms so its not always a "smoke" there are lollipops and all sorts of things.
Please continue to post whatever you are feeling. We all want to know how you are doing and I for one look forward to seeing you on here. Love and hugs
Donna
Totally off subject. Sorry Sass. I just wanted to thank 4kids for the fundraising website. My best friend just told me her niece was starting chemo today. She is almost four and they found a tumor on her liver. So I told her about the website to help raise money for her medical expenses. Sorry to ramble on. Again thank you.
Dear Sass, how are you doing today, I pray they can get your pain under control,
Sounds like they are throwing the book at you just now.
Hate to hear your suffering so badly, you have had more than you deserve! God bless and chin up,
Hugs Dolly x
((((((Sass))))) Can I just offer a hug and a BIG "I UNDERSTAND!!!!!!!!!!!!!!'
Please never feel like you are whining! It is really hard to live this way. I know others understand too...and you are never a bother. I wish I could get on here more to offer more support because we really DO need one another!!!!
You have all my prayers and positive thoughts that I can muster up. I am VERY, VERY sorry for your suffering and pain. I wish I had a magic wand to make things better for you hon.
EllaBlue
Sass...we are all in this together. The good, the bad and the ugly.
Please know that it takes courage to vent and allows those of us who are silent when we are feeling 'trashed' to know 'we' are not alone...and in that there is the comfort of company. Who else but those in our shoes knows?
And how many times do you share inspiration ... lift the trodden soul.
How many times do you think of us and include us on your journey so that we are educated...
While your exact issue may be unique, we share your 'good, the bad and the ugly'
....Just a few month to spring dear Sass...and the joy of your garden and chair.
Dear Sass, you can unload all you want. You are always here for all of us. You have no reason to feel guilty for it. And I know you didnt mean suicide. Your just upset, angry and in pain.. I get it.. I so understand what you mean by not needing something for depression, but need something to fix the sjogrens and other illnesses causing the depression.. Your latest diagnosis is scary.. So unfair.. I hope you can live long in spite of it. I hope you can find some relief from your pain.. We are always here for you.. Please feel free to come in here to vent, unload and whatever you need.
LUna
Please don't feel any guilt, or that you must apologize for anything. What you may not realize is that sharing the bad can help another every bit as much as sharing the good. I feel stronger and not so alone when I find myself in the position of listening and offering comfort or advice to another Sjogrens sufferer. And I know that when I just can't take it anymore and simply have to let it all out, there will be people to help me through it all. It's like the waves on the ocean..we give to each other, we receive from each other.
If you only shared the good times, then others may feel you don't really, REALLY know how it feels to be worn so very thin by constant pain, never ending doctors appointments, the fear that comes with it...etc.
My warmest, hugest hugs go out to you. Just remember you aren't alone, and in sharing your emotional pain with us as well as your symptoms, you give us a gift as well so that we may feel the connection that comes with helping shore up someone who you know is feeling exactly as low as we've often felt.
I don't know about you, but even though we feel an exhaustion & pain that others can't fully understand, on top of it all is added the extreme mental & emotional exhaustion just trying to get others to understand the scope and depth of what we go through.
If I find a fellow someone who is being beaten up badly in everyday, by Sjogrens and all it entails, then it's truly comforting to me to comfort another. That's what we're here for. So please, never, ever add to your pain by feeling guilty about simply expressing what you feel.
Much, much love!