The Living Word:
God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging.
He says, “Be still, and know that I am God... Psalm 46:1-3, 10a
The Word In Motion:
It was just quiet. Quiet BUT not silent… I knew God was there with me. A lot of people think the quiet is that, God is missing. “Where are you God?” is the question that gets asked. It may be quiet but I promise God is still there – He’s still here. It is quiet, but He is not silent. He is still with me and directing me during this time. I am not alone. He has not abandoned me. He was the flagger on the road saying, “take this detour.” He directed me to this path. The destination is still the same, just a different route.
So now I’ve developed this cough that won’t quit. I have had bronchitis and pneumonia before, but this cough was worse. When I started coughing I could not stop. I also had this pressure on my chest that made it hard to breathe. So went to my primary care to see what was going on. They took an x-ray and told me that they wanted me to get a CT scan. While waiting for them to schedule that appt., my chest pressure/pain, my voice ( I could barely talk) and my breathing were getting worse. I called the nurse and she said for me to go to ER. They did the CT scan and then sent me to pulmonology. At the same time that this was going on, my doctor had my blood tested for pneumonia and tuberculous. They came out negative, but the CT scan showed some masses in my chest. When I got to the pulmonologist he said that they needed to do a biopsy of the lymph nodes and the granulomas that were in my lungs. He felt it was either lymphoma or a disease called Sarcoidosis. So a biopsy was scheduled for the next week.
- I know that I am not done yet. God still has a plan for me.
- I know that I am not done yet. God still has a plan for me.
It is hard as a mom to come to a place where you cannot do anything. I was sitting watching my family moving and carrying on, but I was stuck on the couch in pain. I couldn’t even cook dinner. Help me, God, to see the good in all of this.
Well, after Thanksgiving the diagnosis came back. You do not have lymphoma, but you do have Sarcoidosis. I praised God when they told me I didn’t have lymphoma. I didn’t have cancer.
Now at this time I felt very relieved, I don’t have cancer and many others said the same thing to me. Almost responding with “its only Sarcoidosis.” But as I am learning more about Sarcoidosis… I’m not sure that it is any better. I have been diagnosed with a hyper-immune disease. Here is some information to help explain this disease.
Sarcoidosis - is a rare inflammatory disease that affects multiple organs in the body, it causes heightened immunity, which means that a person’s immune system, which normally protects the body from infection and disease, overreacts, resulting in damage to the body’s own tissues. It causes abnormal masses called granulomas. These granulomas may alter the normal structure and possibly the function of the affected organ(s). The disease can and usually does affect others organs, too, including (but not limited to) the skin, eyes, liver, salivary glands, sinuses, kidneys, heart, the muscles and bones, and the brain and nervous system.
No one knows exactly what causes Sarcoidosis – and there is no cure.
I have the granulomas in the lungs, and the lymph nodes in my chest are so swollen they are pushing against my aorta (hence the chest pain). This has them very concerned.
So treatment is “immune suppression therapy”. Remember earlier when I mentioned that I felt I shouldn’t take prednisone in the beginning? Well, my pulmonologist was very glad I didn’t take it. It would have masked my symptoms and they wouldn’t have been able to find out what was wrong. I would have just gotten worse until I was in a chronic state. Praise God, I listened to that still small voice! (Quiet but not Silent). But now that they know… prednisone is the main part of the treatment.
They suppress the immune system to reduce swelling and stop my immune system from hurting me. I am on several medication to help me with this. The side effect is, I can get sick easier. So have to be very careful when I go out and who comes over. The decision to take the medications that I needed, was very hard for me. I don’t like meds or the side effects of them. The doctor put it very directly to me: “Cindy, you have a disease that is very serious and you can die from it, if we don’t do this. We have to get the inflammation down in the lymph nodes. They are pushing on your aorta and the granulomas will keep growing.” This kind of helped me with my decision. (You think?) I still had to wait the 3 weeks for my biopsy incisions to heal before I could even start this regime and get some relief. This made the holidays very interesting needless to say.
So... this therapy is a wait and see therapy. At some point they will lessen the meds and we will wait to see if the Sarcoidosis has calmed down. This will not cure it, it will only calm it down. We don't know what will trigger it to activate or even where in my body it will become active. And so we wait.
The detour is a different path to my destination, but is it a bad path? I never knew I would be in this situation. I didn't plan for this. Sometimes I am unable to move or help my family with simple daily things. I can’t go out due to the immune suppression. We were told, that if I got sick I would probably end up in the hospital. Basically I don’t have a working immune system. People are always recommending all these things to help me, but with this disease if my body sees it as a foreign substance it will attack it and then it will attack me! So everything needs to be carefully studied before I can breathe it, ingest it, or use it. I have moved into the twilight zone of Sarcoidosis.
In Lamentations 3: verses 18 through 26, it says
So I say, “My splendor is gone and all that I had hoped from the Lord.”
I remember my affliction and my wandering, the bitterness and the gall.
I well remember them, and my soul is downcast within me.
This is a time that I could wallow, be discouraged, and even angry. As Solomon so succinctly says, “I well remember my affliction: and my soul is downcast” Yes, I do get discouraged and frustrated but I refuse to wallow. I want to do what Solomon does next… He says YET! Yet, this I call to mind and therefore I have hope:
What does he call to mind? What does he remember that gives him hope?
I need to remember what he calls to mind, because now there is a concern that the Sarcoidosis has become active in my heart.
More to follow - look for part 4