Emotionally, physically, and mentally drained....

I have another post I recently wrote in the "Treatment Decisions" section of this discussion board, that explains a lot of my situation.

But this is how things are going today....
The nurse my insurance company assigned to me can only be an emotional support for me. He is only set up to be a nurse for people with diabetes and asthma and stuff...Tricare I guess doesn't have nurses for sarc. The nurse told me to call the doc and demand the stinking referral to the pulm. disease specialist. So...I called my doc yesterday and told them that I desperately want to see the pulm. specialist, and today they called me back to say "No," again, and wait for my appointment on the 25th. I'm tired of being sick, I'm tired of waiting, I'm tired of them not having any answers for me, and I really do sometimes believe that the doctors just want me to die off so I will be out of their hair. I feel like I can't fight anymore. I've been fighting this for 3 years. I've been very nice and agreeable with them, and I am just not strong enough to be assertive. I'm so tired. No one believes me. I don't know how much more of this I can take without being hauled off to the looney bin. I've decided that when it comes to sarc...I hate any and all general practitioners...what do they think they are going to accomplish by ignoring me?

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Oh gosh, I hear you!!!! Get another doctor if you can, I switched mine and the new ones are so nice.

Sarcoidosis can cause many many MANY problems , one new doctor pointed out to me the effects of sarcoid on my hand. I can't remember his exact words but he could see the shapes of my hand changes from sarc and arthritis......

Before the changes of doctors I was crying a lot and my therapist kept reasuring me that I 'wasn't' a hyphochondriac. Yeah, I have Post tramatic Stress and OCD, but my head is clear. My pain is real....

When I was first diagnosed in 1992 I bugged that doctor for a year to take xrays of my lungs because I 'felt' something was in them.........Well, he finally did that to 'prove' there was nothing wrong, he couldn't understand why I was coughing so much, but didn't believe the cause was my lungs.....Boy, was he shocked when he had the xrays done and I was loaded with 'spots' that needed to be diagnosed....2 bronchoscopies later it was definately sarcoidosis!!!! Never heard the word until he said it.....I said "oh god, what is that?!" New information has come along over the years and I realize it's GOT a big control over my body....!!!!!

Hang in there, if you've been fighting for 3 years your a VERY STRONG person...A lot stronger than you realize because of THEM.....They need to listen and stop hurting the patient....They get paid to deal with the patient and if they don't know what it is, In my opinion, they should recommend a doctor who might or does.......

take care of Yourself!

Rosie Marchand

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Keep up ur insistance. General practioners can be quite ignorant of the disease. When I was first diagnosed in 1999 they told me I had lymphatic cancer and only had 6 months to live. 10 years later I'm still here and did not give up in my persistance. I had similar difficulties getting a referral. I can tell you if the hospital ur dealing with is accredited they must have an impartial third party called an Ombudsman department that acts as a patient liason. I had to work with the Ombudsman department for 3 years and ultimately the Administrative Board of Governors ordered my case to be turned over to a Pulmonary specialist. It took alot of hard work but I was finally referred to the department chairman and not just some resident. I was in pretty bad shape by that point, had lost 350CC of my lung capacity and had O2 Sats as low as 67% but many years later I am stable and surviving. Best of luck to you.

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Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

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