I don’t like to talk much about my disease sarcoidosis, but today I felt I needed to say something. If nothing else, just to get a little grieving over and done with so that I can move on for a while more.
The worst thing you can say to someone suffering with sarcoidosis is, “…but you don’t look sick.” It is a silent disease.
Sarcoidosis is from the root word sarc meaning “flesh” where we get the word sarcasm from, which means “to cut the flesh.”
When I think of afflictions I think of Job and everything he went through. How it all started when Satan appeared before God’s throne and Jesus asked him, “Have you considered my servant
Yesterday I read that “sarc” is called the ‘snowflake disease’ because it manifests itself in so many different ways in each person it affects. Inward symptoms can involve any organ of the body, but my specific inward symptoms are cancer-like spots on my lungs, inflamed lymph nodes in my chest, and inflamed nerve endings. I have a long list of symptoms, but my worst outward symptoms are a persistent tickle in the back of my throat that always leads to a compulsive cough, pressure point pain that can manifest itself anywhere at anytime all over my body, watery eyes, and a relentless fatigue.
Three people have died from sarcoidosis who were involved in 911. The latest was just a week ago or so. There is obviously something about the inhaling of harmful substances that have to do with it manifesting itself in certain people, but there isn’t enough research to find a definitive pinpoint reason.
Sarc is a rare disease and not much is known about it. The doctors seem perplexed when trying to treat it. They act as if it is the big bad giant in the room and they have no idea how to slay it. Everyone of them that I have seen seem very uncomfortable with the disease, and I think it has something to do with the fact that they are clueless and have to confront their own inability to play God and facilitate healing. This is a stubborn disease.
My worst fear is that I will die a horrible painful death gasping for breath, or that this disease will progress to engulf every organ in my body and cause a myriad of horrible complications resulting in a painful death. I can’t help but let my mind go there once in a while, and I don’t think it’s a bad thing that I do. It helps me to number my days rightly so that I may gain a heart of wisdom.
My son told me that God gave me this rare disease because He thought I was pretty special. To the unbeliever that might be an offensive statement, but to me it was just the right thing to say at just the right moment. See, I trust my Savior explicitly. He died for me. He chose to be nailed to a cross and bleed to death so that I can live. And live I will. I can say, like Job, I know my Redeemer lives and that in the end I will see Him face to face.
I know that I have this disease for a reason. I know that this disease has come to me by permission of my loving Father. I know that I am being tested and refined through this disease. All I have to do is be patient in affliction.
Having this disease has unearthed a few sins I have rooted deeply in this sinful flesh. Stubbornness and sarcasm are two that come to mind immediately. Every time I look in the mirror and see the scar from the mediastinoscopy that biopsied my disease I’m reminded of both. The scar is my scarlet letter for the world to see. No disease is worse than the sins I commit against my loving God.
And this reminds me that Jesus wears my worst scars for me, and that is like Christmas in July to this “snowflake-diseased” child of God.
Father God, It hurts to say this but thank you for sarcoidosis, thank you for those who pray for me to be healed, but most of all thank you for Jesus. Your cross is the loving arms of God picking me up and carrying me when I don’t feel I can go any farther. Please heal me, God. Amen.