Still waiting…Another Sarcoidosis Vent

As I sit in my chair, on hold, waiting for the insurance company and the pharmacy to decide if they will finally fill a prescription that was written last Friday; I wonder just how long will I have to go through this crap!

Last Friday the test results were given to my by my new Rheumatologist. Confirmed, the Sarcoidosis in now affecting my liver, bones and the lining of my joints. All of the complaining to physicians that something was not right and that the pain could not just be the result of Fibromyalgia was answered. Being told, “oh, you are just to overweight and need to exercise,” or “let me sign you up for another round of PT and that will fix it,” or finally, “I will increase you pain meds and that will give you some relief.”

Talking about sick and tired of being sick and tired of it all. Battling this debilitating disease is enough, but not getting answers is a major problem.  When you have physician’s who think that it’s all in your head or just try to give you a quick fix instead of fixing the problem itself, they are not really looking out for your best interest. Does that make sense?

So now I have been diagnosed and the physician prescribed a medication that will attack the problem, but my insurance company and pharmacy are arguing over who haven’t submitted the correct paperwork.  Another thing that was told to me was that the drug is not covered by my insurance company.  What to do?

English: Signs and symptoms of sarcoidosis

English: Signs and symptoms of sarcoidosis (Photo credit: Wikipedia)

Sought out a 2nd opinion…Tired of being in pain..


At the suggestion of my Rheumatologist that I thought I loved, I found someone who examined me, listened to me, read my chart thoroughly and diagnosed what I kind of already knew. Well, my prednisone prescription was tripled and I am to take, after labs, is a drug that is the next step above methotrexate. Forgot what it was called unfortunately.
Sarcoidosis is now affecting my bones and joints. I called it a long time ago because the pain was extreme, but was told it was the Fibromyalgia or Rheumatoid Arthritis. MRIs and Xrays showed that my lymph nodes were swollen, yet it wasn’t being addressed.
All I ask is for prayers and to all who read this, listen to your heart. If it seems as though you are not being taken seriously, seek out another doctor. Don’t waste your precious time making them rich for doing nothing.

Warning! Just Venting!!!

I listen to everyone talk about their various symptoms and how they are seeking help from doctors here and there. I need help here; in Delaware!
I am seeing a lot of specialist to treat my Sarcoidosis and I really only want to see one. Why is it so hard to have one Sarcoidosis Doctor in my State to treat me? None of my doctors seem to want to communicate with each other except my Rheumatologist who I adore. It’s going on 14 years and I am totally tired of being tired all the time. It seems like I am getting worse rather than getting better. Everything hurts! I don’t want any more pain meds! My hands, even as I am typing this, are swollen, painful and inflamed. When washing my body today, it hurt when the wash rag touched my skin.

Now I am faced with the care of my elderly 85 yr. old mother-in-law and I can’t even care for myself. She has Parkinson’s, but other than that, she gets around better then me. I have the support of my children who all live at home (25, 22 and 13) as well as my husband. Though very understanding of all of this, I feel for them.

Monitoring my numbers, all these meds; tired of it all.

Thanks for letting me vent.Image


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