Join the Conversation on
6K people
0 stories
391 posts
About Sarcoidosis
Explore Our Newsletters
What's New in Sarcoidosis

Medical care too expensive

How many people have trouble affording the doctor? I literally had to cancel appointments because I already owe so much. My freaking deductible is $6000, which is just crazy. Some things covered before then but not much 🤦‍♀️. It is so frustrating. #Doctor #doctorappoinment
#PolycysticOvarySyndrome #Sarcoidosis #Headache #Migraine #ChronicFatigue

31 reactions 9 comments

I'm new here!

Hi, my name is sarcoidfighter. I'm here because after years of misdiagnoses and doctors telling me "It's all in your head" or "See a therapist" I finally have a diagnosis of Systemic Sarcoidosis.


8 reactions 5 comments

Mercer County NAMI Walk

Hi Everyone! I am not sure where any of you are located, but on May 18th 2024 there is a National Alliance of Mental Health walk that I participate in every year.
I was wondering if there is anyone here who would like to join my team? My team is The Mighty Minds. :) We will walk to help stigma on Mental Illness. If anyone would like to join or donate to my team I will put the link below.

It would be so cool to have you guys there. I'd love for anyone to be a part of Mighty Minds!!!

If the link doesn't work you can message me on here and we will figure it out. I'd love for you to join. ❤️

#MentalHealth #BipolarDepression #Depression #Anxiety #CushingsSyndrome #OpticNeuritis #MultipleSclerosis #Steroids #Sarcoidosis

NAMIWalks Mercer County

I'm supporting NAMI!
4 reactions 1 comment

What I wish my Doctor did before deciding I deserved physical and mental abuse.

In 2010, I already went through 2 years of going blind in my eyes. No answer but great job trying to find one. Shots, drops, and full blown surgery. Still keep coming.

Many new issues in 2010. Pain there was no answer. Headaches. Pain so severe in my armpits, neck. Family Doctor: I am faking it because she had no idea what it was.

Then dots all over my lungs. Another new problem, I severe triggers. I say my oxygen goes to 70 on pulse ox. Doctor I am faking it.

Go to lung doctor. Multiple issues that my family says get a new lung Doctor. Hygiene: sneezed into paperwork he handed to me. Did not tell me in biopsy that I could get collapsed lung but got one. Left biopsy on my bed that was wheeled into the recovery room. Wife found it and gave it to the nurses. Collapsed lung, quickly discharged from hospital and sent to off sight imaging center. Told you have a collapsed lung, we have an ambulance on standby. Lung Doctor: go home. Nothing else.

Eye Doctor: If lung biopsy is sarcoidosis, that is your eye problem and we can get proper help now we know what it is. Ask lung Doctor for records.

Family Doctor: I try to say exactly what the eye doctor is telling me. Ok, my mistake. I thought they talked to each other. Going on for 2 years. Doctor tells me, 2 other patients get no treatment for sarcoidosis, so I will not consider it for you. Eh?

I want to be out of work until an answer can be found why my oxygen goes so low. Triggers. Cold weather. Smoke. Happens one step out of my door. You are faking it, best place for you is at work. Work telling me unless you get out on disabilty, they will can me.

Go to lung Doctor and ask for records. He says and I quote, “No one needs to know what I am doing” Adds “Plus Sarcoidosis is nothing in your eyes, a couple of drops and it goes away.” I tell him about triggers. They happen one step out the door. Can’t breathe. No air in nor out. Tells me to go to work and ask about a certain welding. That welding he is referring to has been banned for over 30 years. It is not welding.

I got to eye Doctor, she asks for records. What did he say? Lung Doctor refuses and I say what he told me. My daughter was present at this appointment. Eye Doctor calls lung Doctor ignorant. Tells me, get a new lung Doctor. Tells me where, not whom though.

I plead with family Doctor to not send me to work. I am going to die. She brushes me off. “You are not going to die”. I tell my wife, I am going to die today. When I do, find out what is wrong with me as I am not making it up.

My co-workers will not allow me to do anything. Does not matter, it is the cold weather. Friday, I leave work to go into cold weather. I get to my car but I can’t get air in nor out. I pass out. Some long time later, I come to. Hundreds of co-workers gone, I am only one in parking lot.

Saturday, I call family Doctor to request a new lung Doctor that my family had been asking about for months now. Family Doctor says and I quote, “He is my lung Doctor, so he is your lung Doctor”. I repeat. She repeats. I repeat louder. She repeats louder.

Go to eye Doctor. She tells me and I quote, “So your family Doctor was wrong what is wrong with you?” Walks out of appointment.

Why for 14 years running has no one ever asked, “What happened to you?”

Why not ask me why I did not want that lung Doctor?

Why did I not dismiss that family Doctor?

That was 2010.

2011 my oxygen goes to 70 in surgery Easter. Never received an answer why.

Many real nasty things said to me. 2011 thru 2015. What I believe is how my PTSD started was when my heart stopped twice in 2014. I asked my family Doctor, “Why was I not helped?’

Family Doctor says, “you were not helped because you talked about other Doctors and some Doctors don’t like that”. Added, “I no longer use lung Doctor anymore because of all the compliants”

So 14 years of both physical and mental abuse because I told the truth about a lung Doctor she no longer uses because of all the other complaints.

Just some of the quotes:

Go kill yourself.

No one cares about you.

You deserved it. (Multiple times)

You were lied to going back to when you were first disabled.

You will find it impossible to get proper mental help because of how you received the trauma.

You were given prednsione induced diabetes A1C, heart failure and kidney failure on purpose.

You must agree that you wanted your lung problem to be Sarcoidosis or you will never know what is wrong with you.

You must agree your family Doctor (who told me to go kill myself) did not know about mental health disease.

You should fear what more Doctors could do to you.

I have been blocked from leaving a Doctor’s office once. Physically blocked. You can hear me on recordings asking to let me go. They were trying to TRIGGER a response.

PTSD diagnosed 2018, not told. Told to leave and find care elsewhere.

Stop going to Doctors.

Last mental health provider told me CPTSD was because of asthma mistakes which is a lie. It was on purpose and those words that family Doctor has said to me is what I think about ALL THE TIME.

I see no path forward. Only if the family Doctor wants to admit she did not help me on purpose because I talked about a lung Doctor she no longer uses.

Now it is WAY more important to protect all those providers that failed to help me because that family Doctor said to do it. That I deserved it.

So I stopped going to Doctors long ago. No more lies. No more physical abuse. No more mental abuse. No more blood pressures 200/120. No more chest pain.

I have papers that say, severe high risk asthma. Doctors have known it long ago. They are screwing with me. Do no harm is just a bunch of words. They have no meaning in real life. All it takes is one Doctor to say you deserved to die. The rest do nothing but try their best to join in. Or cover it up.

The good providers I can tell who they are. They dismiss me as a patient after one appointment. They don’t want to get involved. So my choices are the wolves or nothing. I am done with the wolves.

Why was I not asked why I did not want that lung Doctor? None of this had to happen. NO ONE DESERVES THIS.

See full photo

Current update

Since my sarc seems to have advanced significantly & it’s now causing extremely painful flareups in my heart muscles on top of my lungs, eyes, etc. I’ve had to resort to a very high dosage of steroids just to be able to breathe, sleep, function. It’s not sustainable. #ChronicPain #RareDisease #Sarcoidosis

5 reactions 1 comment
See full photo

Does managing your illness(es) feel like a full-time job?

I’ve got all my specialist appointments scheduled for the new year now that my deductible has hopefully been met. Time to start pursuing treatment plans, procedures, diagnoses, etc. It starts all over again. Back on the phone being a secretary. The trips to Atlanta are often extraneous too. It’s exhausting being chronically ill & there’s no paid leave or vacation time from it. I just wish I could escape it all somehow. It feels like everything falls on the patient. I’ve worked very hard organizing a team of Emory doctors so they’ll communicate with one another better over my care. It hasn’t been easy because I’m a uniquely “difficult” case due to my PI or primary immunodeficiency on top of everything else. I can’t just take biologics & steroids all the time because it lowers my ability to fight infections & I’m already prone to them. That’s why I receive monthly plasma infusions. It just makes pursuing my other rare diagnosis that much more difficult since I don’t produce my own antibodies. I need the official diagnoses so I can reapply for SSI again. It’s just so costly being this sick & disabled. I’m over it. How do you bear the burden of it all? I rely so much on my spouse & immediate family for support. I can’t even drive myself anymore. I want my independence & health back. Unfortunately, the older you get the more our immune systems get depleted. I’m determined to continue on fighting & advocating for myself. Thanks for having me in the Mighty community. It means a lot to have a place to come to that understands. #Spoonie #ChronicIllness #ChronicPain #ChronicFatigue #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #RareDisease #Sarcoidosis #Arthritis #CommonVariableImmuneDeficiency #PTSD #MentalHealth #Anxiety #ObsessiveCompulsiveDisorder

16 reactions 5 comments
See full photo

Dear Chronic illness warrior, it’s okay if…

•You can’t get out of bed today.
•Your needs change.
•You take longer than others.
•You cancel or change plans.
•You can’t hide your pain today.
•You use a mobility aid.
#ChronicIllness #ChronicPain #ChronicFatigue #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #Arthritis #Fibromyalgia #Sarcoidosis

22 reactions 5 comments