by Cindy Geyer

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 was told that after the biopsy I would be down for a week and I could not lift anything over 3 lbs for 4 weeks. So there I was in pain from whatever I have raging through my body and now dealing with incisions in my side and the pain from the surgery. Also, it was the holidays. So how am I supposed to cook Thanksgiving? How do I get my house ready for Christmas? How do I shop for my family and do all the traditions we have fun doing? 

• I know that I am not done yet.  God still has a plan for me. 

I struggled with these questions a lot. Why this detour God? What is the purpose for this? People quote Jeremiah 29, “For I know the plans I have for you,” says the Lord. I know He has all this in His hands and he will not leave me. But Papa God, do you realize all that my life, as a mom, entails, especially during the holidays? 

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

by Cindy Geyer

The Living Word: I remember my affliction and my wandering, the bitterness and the
                    gall. I well remember them, and my soul is downcast within me. Yet this I call
                    to mind and therefore I have hope: Because of the Lord’s great love we are not
                    consumed, for his compassions never fail.  Lamentations 3:19-22

The Word in Motion:
Little did I know how long this detour was going to be.
 
As I entered the conference room that Sunday morning, the only thing I could think of was that God had called me for a purpose. He had me in the palm of His hand. “Be at rest, Cindy, and trust Me in the fire.” The conference was amazing but by the end of the day all my symptoms had increased in intensity. It is hard to explain the pain I was in. On Monday morning, I could barely walk the pain was so intense. My ankles and feet were so swollen. The rash was unbearable. Every joint in my body hurt. My husband said, “That’s it, we are going to the doctor.” We went to the doctor and he wasn’t even sure what was going on. His first thought was that it was an allergic reaction to something. So the blood tests began. My doctor gave me every kind of blood test he could think of. He even called infectious disease to see if there was anything that they thought I should do. When he exhausted his thoughts, he sent me to dermatology about the rash and granulomas that were growing on my hands and feet. The dermatologist did a biopsy and checked out the rash. It was not skin cancer, praise God. She called it erythema nodosome. She then referred me to rheumatology. Rheumatology checked out the swelling of the joints and the rash, it was not rheumatoid arthritis, but my inflammation markers were extremely high. He wanted to start me on prednisone. This is where I said “No.” I knew the side effects and the risks with diabetes. I wanted to know what was going on before I threw meds at it. He did agreed with the dermatologist that the rash was erythema nodosome. He wasn’t exactly sure what the swelling was though. So, he sent me home saying it may go away on its own. He told me to keep taking the Ibuprofen every 6 hours for pain and to touch base with him if my symptoms got any worse.
 
This journey wasn’t just a detour. It also had a giant stop sign. I was now in a position that I couldn’t walk or get up on my own. I had to have my husband and boys lift me from the couch or my bed to go to the bathroom. I couldn’t even use my hands. No cooking, cleaning, typing, writing, I couldn’t even crochet. It was pitiful. The swelling, the granulomas and the pain made it impossible to do things on my own. I was not eating much and losing weight fast. All of these things concerned us and the doctors, but no one knew what was going on.
 
The strange thing during this time (2 long months) was… I wasn’t afraid. I was in pain and frustrated with my body -- but not afraid. I knew God was there with me. I was sure He was the flagger on the road saying, “take this detour.” Does this mean I was at peace and calm? No, this was one of the hardest and most painful times in my life. It was rough on my family, also. It was also a very lonely time. How do you explain to people what is wrong when you don’t even know?  People would ask me, “Well, God must be speaking to you during this time then. What is He revealing to you? Anything profound?” I was not hearing anything profound.  It was just quiet. Quiet BUT not silent. I knew He was there. “Yea, though I walk through the valley of the shadow of death, I will fear no evil, for you are with me!” Psalm 23.

I had this profound sense of peace. Yes, I would get emotional and, at times, even angry, but my spirit and my mind were assured of God’s purpose in all of this.

You know how you desire to come to a place where you just trust and not fear? But, normally when things happen you go to the worry and complaining stage instead, even though you really want to arrive at that place of trust. Well, this is what I was experiencing:  that place of trust. Kind of the calm in the eye of the storm.

Then the severe coughing started and I was having a very hard time breathing. I had pressure on my chest that felt like a weight pressing down on me to smother me. This time I got sent to Pulmonology.

The detour has now turned into a gravel road with pot holes and sharp turns. It is getting a lot harder to navigate and I don’t know if I want to be on it anymore. I just want to go home.
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What now God? What is wrong with me?


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More to follow: look  for Part 3