just need to unload.

[slccom]

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?

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

[sass]

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.

[Daisy1234]

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

[sass]

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~

[gloria]

Sass I am glad you are able to talk about your pain. Where else can we do that? Hang in there and keeping yapping.

[irish]

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

[angels04]

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

[Wicked angel]

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.

[Dolly Dimples]

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

[EllaBlue]

((((((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

[quietdynamics]

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.

[Luna]

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

[crmak]

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!