After the shock of my appointment wore off, I began to worry. Frustration and despair followed as I contemplated the situation I’m in. Fearing the results of my tests is just the beginning.
Knowing that the doctor suspects something worse than Sjogren’s Syndrome has made me afraid. I’m afraid of Sarcoidosis. I’m afraid of Interstitial Lung Disease (ILD). As I’ve read about these diseases, I now know how horrible they are. They aren’t diseases with a cure or even a steady treatment. People with these diseases have to deal with numerous appointments with specialists to try to stay on top of the possible symptoms. Because these diseases don’t just stop at attacking your lungs, you have to fear for your organs, heart, eyes, and skin.
Sarcoidosis was considered rare in the past, but not any more. There are not great treatments, because not much is known about it. No one knows what causes it. Patients are given high doses of steroids or immunosuppressant drugs. The disease can lead to fatal attacks on organs.
If my x-rays show signs of these diseases, there will be many more tests to diagnose (including biopsies). Between every appointment, there seems to be a three-month wait. These diagnosis’s take forever, because the waiting drags them out for months or years. I should know; I’ve been trying to get diagnosed since 2011. Waiting with no help has really gotten unbearable!
When I started being non-functional in 2011, I thought that doctors could do some tests, figure things out, and give me treatments to feel human. But, that hasn’t been the case. Each doctor refers me to someone else, for yet another test. I’ve had the same tests repeated over and over and over….
Along the way, there have been a few revelations. Doctors diagnosed me with: Ehlers Danlos Syndrome, chronic migraines, Mast Cell Disorder, osteoarthritis, osteopenia, and more. I just found out the results of my x-rays from 2016. The doctor didn’t tell me that I have: degenerative disk disease, bone-spurs, arthritis on my spine, anterolisthesis, and calcification. All of these cause me pain on a daily basis, yet no treatment was offered.
Every time I meet a new doctor, they question every diagnosis that I’ve ever had and want to re-test many results. It seems that connective tissue diseases, auto-immune diseases, and similar diseases have no one that can just find solutions. I’m so sick of all of this! No one cares that you live for years in the bed with no answers and no solutions. All I can do is hope and pray that someday this search will end.
Disclaimer: I’m not a medical expert. This post only contains my experiences. If you have physical problems, please consult a personal physician.
@2018, copyright Lisa Ehrman