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Pulmonary Sarcoidosis: How are you dealing with it?

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

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@clay1969

I am a 51 yo widow whose husband died of a rare muscle disease 3 years ago. After his death, I was dx with Sarcoidosis. I have so much pain and breathing problems. The ER said the CT Scan revealed that it is progressing. When I returned to my PCP, he asked me if all my symptoms were in my head because I am also Bipolar. It has been rough. It is hard supporting myself. I am on disability, but I work part-time to pay for medical bills and medicines. This is wearing me down. Nobody knows what it’s like, not even my family.
All Alone,
Karen

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Replies to "I am a 51 yo widow whose husband died of a rare muscle disease 3 years..."

Sarcoid is a tough one Karen. It’s not in your head. It’s in your lungs! 🙂 Sorry some doctors are insensitive. Prednisone is a help and of course inhalers, but your bipolar meds might interact with a steroid. I don’t have that kind of info. What I will suggest is you see a lung specialist to determine how best to ease your symptoms. There is help! So sorry for your loss and sadness.

We see a great neuro doctor my husband has neuro sarcoidosis this is sarcoidosis in the brain basically And sarcoidosis he is agressive at treatment , he is in fort Wayne Indiana he has listened and treated never judged us

Dear clay, U R NOT ALONE, I know it’s a lot easier to say than do. But believe me u r not alone. Everyone goes thru the trials & tribulations of every day LIFE. Some of us more than others. There are many programs that help people who truly need it. This crazy virus is not in your head at all. You have been thru a lot, unfortunately Sarcoidosis starts to react to the Stress ur body goes thru when dealing with such tough situations, that you have had to endure. You really need to open up a line of communication with someone, you feel comfortable with, family member or a friend. You are a young widow, and this Dr needs to be more understanding, instead of making comments like that. It only shows his ignorance
and well, lack of knowledge about Sarcoidosis. I don’t know where u live but there r many Drs. Who take on patients who r on disability. U should also make an appt. with a Pulmonary Specialist who knows about Sarcoid, you should also ask him if knows of a good Dr. u need to find one. I am so sorry, u have to deal with so much by yourself. We all need a good support system, if it’s not family then friends old or new, could be very helpful. U know u don’t say if u have any children. If u do, and their older they could be a great support, we as adults, don’t give the young ones a chance, they have a different way of looking at certain things going on. We just have to be careful, as sometimes their ideas could be quite outlandish, but they will most definitely make u laugh. Thru the tough times & thru the bad.
If u you like you could write me & we could be pen pals, I promise you I will write you back. No doubt, no one should feel or be alone, it’s a horrible feeling. Remember it’s always good to meet new friends.
I hope you start to feel better soon. Remember you can write, anytime, I have insomnia, one of the pleasures of having Sarcoidosis, LOL
Mo

,

Tysm Irene. I see my pulmonary doctor on Wednesday, May 3rd. I will definitely talk to him about my concerns.

Good luck!

I would love you to write. My family and daughter aren’t there for me. Especially my 27 yo daughter. She has enough problems of her own. Please contact me here or by private message.

Hi @clay1969,
You’ll notice that I removed your personal address from this public forum. According to our Community Guidelines, we recommend not sharing personal contact information publicly. https://connect.mayoclinic.org/community-guidelines/

You may wish to use the private message function.

Ty. I didn't know that about the address.  I call myself reading most of it.

My name is Jody vicaro I have been plaqued with this disease I have it in my lungs along with a mass in my right lung and skin and getting check for other organs I very nervous to it being found in my heart I also have high blood pressure and mitravalve prolapse and very prone to heart valve infection don’t know very much about the diseases but want to know more it has been terrible to say the least is very painful and debilitating

I’m still trying to stay employed for my kids sake but fear for all the time having to miss work and not being able to keep employment due to the disease if social security benefits would be a better option my question is can I get disability benefits for this terrible disease

I have been labeled with disease I have it in my lungs along with a mass in my right lung and skin and fear it to be in my heart because I have a mitra valve prolapse prone to heart valve infection and possibly other organs pending further test my vision is effected as well I can’t keep employment but keep trying I’ve worked all my life for my children and I am falling behind on that my question is can I get my social security disability benefits due to this painful and life altering disease

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