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bboxer (@bboxer)

Pulmonary Sarcoidosis: How are you dealing with it?

Lung Health | Last Active: Aug 10, 2020 | Replies (106)

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@chesneydell1965

Riverotter
I just read your post, I’m so sorry how this nasty disease has ravaged you.
My husband has both sarcoidosis once DX like you said it spread to his feet and neurosarcoidosis
You spoke of stages of sarcoidosis. Could you explain. Or send a link we have not heard of this yet.
The heart doctor has cleared him said no heart issues. Lung doctor says minor changes nothing to worry about. But he still has this chest pain the keeps him in pain in bed. Any ideas as to what this could be ?
Tammi

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Replies to "Riverotter I just read your post, I'm so sorry how this nasty disease has ravaged you...."

Hello. Boxer, Sorry it has been a while since I was able to write back, i have many complications since we last wrote. I meant to tell you and other people who are seeking more answers regarding Sarcoidosis. There is a fantastic website that is strictly designated for this horrible unanswerable virus. The site is Team Inspire.com, it site is world wide, you will be surprised at how far reaching this crazy, don’t know how, why or where, I could’ve come in contact with this illness. Give it a try, maybe some answers you have & im sure there r plenty, might be answered. I open all doors, where I could possibly find a answer, or some new information regarding an illness that many people are being Dx with. Some answers are very helpful and some are not, some r happy, and some are sad. But that’s a reality people who have this type of virus must come to terms w/ some of us will go into remission, but unfortunately there are those that don’t. I do know one thing is sure STRESS, will bring any Sarcoidosis that’s in remission to start to ravage our bodies again, & again, only each time it comes back it’s WORSE. One of the hardest things a human being can try to do and that’s avoid stress, not these days. So what r our other options, some r in a constant battle w/ pain, some get so depressed b/c they feel very alone & a burden to their love ones, some r able to get in a few minutes here n there of stretching, or walking, but tire easy, and then there r those who breeze thru this virus w/ no problem or care in the world. I have met both types. Thru talking and reading about different levels of Sarcoid, is a very good thing, we learn about how other people r dealing with this at different stages.
Sometimes it’s the unknown that scares us the most, I know it scares the heck out of me.
And I’ve been thru the ringer & back again, & it’s not any thing to laugh about.
You will find that the Team Inspire.com page has a lot to do with the Mayo Clinic, the Mayo diet is strongly encourage, helping us to learn how to cope with all the things that come from Sarcoid. It’s a great benefit that these 2 websites r available to us, we meet, learn, cry, laugh, share, understand, and feel better. We also see that we r not alone, and everyone tries to help each other cope. Well now that I’ve said a mouth full. LOL
Please keep in contact, as I would love to know how everyone is doing, and at anytime you might need to have a shoulder to lean on, or a ear to listen, or to hear a good joke, and laugh a little I’m available. Please don’t be shy,
Everyone please feel better, &. Stay safe
Mo

Thank you. I try to learn as much as I can about any condition I have. I expect to find out soon if I have neurosarcoidosis.

I put castor oil packs on my chest and feet. It relieved me from my pain.