12 days that changed the world! well not really but…..

A few days ago I began writing some thoughts about a disease called sarcoidosis. I read multiple posts on Facebook from people who have sarcoidosis. One of the recurring thoughts was how much misunderstanding there is among families, friends and the medical profession about this disease. During this time there were over 3000 views and comments from people with sarcoidosis. Each day a new post brought up a new subject. Each day a different rendition of the song We Shall Overcome was used to illustrate the complexity of attempting to minimize the understanding of this disease. While words are often used, words often fail to communicate.  Please take time to consider these thoughts.

Day 1

In the next days there are many important things we can learn about sarcoidosis. When I was first diagnosed the belief was that it was a very rare disease. One person in a million they said got it. Then they said one out of that million got it as bad as I was attacked with it. Since then I have found that not to be true. I have found thousands of people with it. The fact that it was supposedly so rare allowed it to be ignored. Please share with us your story of your diagnosis and how long you have had this disease. You are not alone and there is growing support both in the medical arena and in support circles. When we add all of our years together we have thousands of years and we can say I am not alone! We are and will be overcomers.

Please enjoy:  Joan Baez – We shall overcome

Day 2

On the second day of this 12 day event please tell us about your diagnosis. My first diagnosis was Erythema Nodosum . My second diagnosis targeted my eyes as both retina’s detached. My third diagnosis was dealing with blood work. Something was rapidly affecting the heart, the kidneys, the liver, the spleen and then finally the lungs. Even then no clear cut diagnosis was made.

Sarcoidosis is at best baffling. In reality the first few diagnoses were simply: we don’t know, is all the Dr.’s would say. Once the diagnoses was confirmed too much damage had been done and the next question dealt with how much time I had left. They asked if they could experiment with medications. They gave me 80 mg of prednisone twice daily. During that time I had to come to grips with my death. A wonderful sense of peace overcame me. An old preacher said God can giving living grace, but you can also receive dying grace. I have chosen to share the song We Shall Overcome as a way to recognize the need to overcome the fires of life. Unlike the rendition by Joan Baez, Diana Ross comes at this music from a whole different perspective. I am convinced that dealing with sarcoidosis needs a total different approach as well.

Please enjoy: Diana Ross – We Shall Overcome

Day 3

On the third day of this 12 day event we look at the surface and ask how has sarcoidosis manifested itself? Just what do people really see? They often say, “but you don’t look sick.” The lumps on my legs were visible. The pain in my face from detached retina’s was visible. My liver, kidneys and spleen were partially visible from the bent over posture. The pain in the muscles and joints was visible by the awkward walk. The lungs were pretty much only visible by the sound of raspy breathing. What about you? What are the visible symptoms of how sarcoidosis has affected you? How have you been able to talk about this with others?

Each day I have been sharing the song We Shall Overcome. The first day was a very traditional mode, then a classic well disciplined orchestratal mode and now a bit out of the box.

Please enjoy: Bruce Springteen We Shall Overcome.

We are all talking about the same disease but share a lot of different words and stories. Please share yours here. Don’t forget to be inviting your family and friends along on this journey.

Day 4

On the fourth day of this 12 day event I share my battle with the medications. Medications can be as devilish as the disease itself. I am also convinced that the only drug I took for sarcoidosis is prednisone. I am also convinced that other medications were brought on because sarcoidosis began to influence my body in multiple ways. One time I remembered walking almost 3 miles a day for almost 4 months. I gained over 50 pounds during that time. I was on prednisone. At the end of the 4 months I was diagnosed with diabetes. At the same time my blood pressure went through the roof. Story after story introduces yet a new medication. My medications include prednisone and some others on this lists in the comment area. Each of the other medications address another condition different from sarcoidosis but happened in conjunction with a sarcoid flareup. I recognize some of the medications from the lists found in the below columns. Some I have used but usually in conjunction with hospital visits. Please share a list of medications your remember using over the years and some of the repercussions. The medication story line illustrates there is a time that is important to collaborate. An illustration of that is found in yet another rendition of We Shall Overcome.

Please enjoy: The Moorhouse College.

Day 5

As a young child I can remember singing the 12 Days of Christmas. When we got to the fifth day we could finally take a breath. Some years later I was going to preach a sermon that started out by asking people to close their eyes and feel their pulse. The sanctuary got very quiet. An elderly lady who had not been in church for weeks, due to open heart surgery, was then heard to tearfully say, I’m alive! then laughingly she said it again I’M ALIVE! I remember when the Doctor told me my lungs were shutting down and I was dying. All of a sudden I knew I was breathing. Like the moment, when as a child singing, I could feel the air rushing into my lungs, I was alive! I could breathe. Breathing to me has become a special event. Sometimes I hear the crackling of my lungs, I feel the tightness in my chest, I stop moving just to catch my breathe. At times I feel the gushing breath or the soft and gentle moving of air, still I know that I am alive. Please share with us your moment of reflection. YOU ARE ALIVE! On this the fifth day of 12 days of celebration I encourage you to stand, to walk forward, take as deep a breath as you can and go out and be the person you really want to be. Limitations are understandable but they are not defeating. Remember we do this together. We shall overcome.

Pete Seeger reminds us of this in a refreshing and “breathy” rendition of We Shall Overcome!

Day 6

On the sixth day of this 12 day event I share how guilt and isolation are so real. Each day I read about 50 posts from over a dozen groups of people struggling with sarcoidosis and other conditions. I know that I am dying. I also know that I am not dead. Originally the Dr. suggested that I may have two weeks to live. I remember laying in bed in a Chicago hospital, not moving, just laying very still. At that moment a gentle spirit overcame me. As I listened to the silence of that moment I understood that both living and dying have grace. As I read your stories I have seen the things I have done right and things I have done wrong. I have felt the hurt on both sides. I have known the aloneness and the isolation this life with sarcoidosis has caused. When the Dr. said two weeks, I made the decision to live those last two weeks in the best way I could. I learned that it was in dying that I learned how to live. I have made many mistakes over the years, some out of being human, some out of stupidity, some out of arrogance but none out of the range of forgiveness and reconciliation. I listen to the brokenness this disease creates in our lives. At times as I understand the good and the bad I am overwhelmed by the tears concerning things done right and the guilt of things done wrong. At times I feel terribly isolated and alone. I have also found tremendous support and strength from groups where people in their vulnerability give reason for hope. Please share with us some things you have chosen to do to help you understand that you did not choose this disease nor did you choose to “wreck” other people’s lives? Sarcoidosis must be lived in dialogue, both the bad and the good that arises from it’s ashes have the possibility of being gifts to those around us.

Please enjoy: Maria Fidelis Gospel Choir – We Shall Overcome 

Day 7

On the seventh day of this 12 day event please share with us a motivating moment when you experienced some sense of liberation from what ever sarcoidosis had/has been doing unto you.

This is a true story. My friends Charlie and Sue came to visit me in the hospital. They had only heard I was there and did not know why. It was about the sixth week of being in the hospital. Sue peaked around the door and asked if I was awake. I had been dozing. Charlie barged in laughing and said, “if I came this far he has no choice but to see us.” Sue slapped him on the shoulder and said, shhhh. He’s not well. Charlie said he’s not dead look he’s moving. I started to laugh. Sue laughed, Charlie laughed. Our friendship was that kind of friendship. I loved them and they loved me. We never talked about that love we just cared for each other. Then they sat down and started to visit. We laughed whether what was being said or not was funny. Four hours later a nurse came into the room and asked Charlie and Sue to leave. Charlie said no, we don’t get to see Carl much any more and we thought we would take him to supper. What a crazy idea, I started to laugh again until tears were rolling down my face. The nurse got angry and said you don’t understand. This man is dying. Charlie said we’re all dying. Now we are enjoying one another, we are not leaving! As the nurse stormed out the Dr. had just showed up on rounds. The nurse grabbed the Dr. by an arm and pulled him into the room. She said angrily I told these people to leave. They have been here laughing all day. This man is dying and he needs his rest. The Dr. started to laugh. Laughingly he said this man has had nothing to laugh about for weeks. The fact that he is laughing is good. The nurse protested his answer. The Dr. then asked the nurse a question, a very profound question, “would you rather Carl die, quietly disheartened in his bed or die laughing?” The nurse stormed out. Charlie, Sue and I laughed until ten o’clock that evening. From that day on my vital signs began to turn around.

p.s. The nurse and I reconciled a few days later.

Please share one of your favorite stories then remember today, we are alive, we have overcome yesterday and the days before. Just as the crowds understand this has to be a joint effort do not forget we are overcoming!

Please enjoy:  We Shall Overcome in Madison 

Day 8

On the eighth day of this 12 day event I raise the question of the necessity for family to function as a whole. Reality is I have not read anywhere that someone put Sarcoidosis on their wish list for themselves or anyone else. It is the kind of disease that needs to bottled and frozen in space somewhere or burned in the hottest pit available. Now that I have said that, I was reminded this morning that families often need to be reminded they are families.

Sitting in the breakfast room of a Super 8 Motel in Norfolk Nebraska this morning I listened to stories about family life. It reminded me of an old teaching, if one part of the body suffers the whole body suffers. I suppose it is also true if one part of the body celebrates the whole body celebrates. In reality I have found teachings like this going by the wayside. It non the less caused me to think in this direction. People don’t get sarcoidosis, families do. For instance multiple vacations were taken at different parts of our lives: This one, we arrived in Las Vegas. I was chipper, we were all talking about what we wanted to do. We were then introduced to the “ElNino” virus. Silly me, I had left my immunity shields back home on the shelf. El Nino sliced into me without any compassion. 105 fever, aches and pains all the way from the hair on my head to the bottom of my feet. Enough said. Now comes the checklist:
a. first thing not done, family spent day worrying about dad in delirious state.
b. day 2 helping dad get admitted to hospital.
c. going to hospital visiting dad laying on a hospital gurney waiting for spinal tap. Then family checking back in toward evening, only to see dad suffering from the pain of two spinal taps that didn’t take.
d. waiting two days for dad to finally get on plane and fly home leaving vacation early.
e. later looking at pictures of fatherless vacation.
f. Repeat this scenario at other times and on other vacations, kidney problems, broken bones, etc.
Our children finally concluded that we don’t take vacations, we visit hospitals.

People don’t get sarcoidosis, families do. How many vacations, birthdays, special events have been lost to sarcoidosis. I chose the next rendition of We Shall Overcome becomes it brings together many of the voices who are identified with this song into one place.

In many ways I believe this is what is needed for families to survive sarcoidosis. We must be intentional and stay focused on one common issue. Here is the Ensemble  please enjoy!

Day 9

On the ninth day of this 12 day event LETS TALK ABOUT FOOD. I like food. Most foods like me. But after certain foods and me get together we don’t always live well together. Certain foods, once they get inside this digestive track say I never thought it would be like this, they kick up a storm, ‘something terrible.’

Shortly after my wife and I were first married we moved to Chicago. She would complain about how bad the meat smelled in the grocery stores. She decided we needed to try an alternative food plan. I was fine with that. We cut out all meats and tried blended proteins. Within weeks I was in the hospital with the dr.’s asking, “what happened to this man?” We discovered that I needed red meat. My body did not have the capability of making complete proteins. A few years later I was diagnosed with gout. I was told not to eat red meat. I limit myself to one piece of red meat a month these days. I eat chicken, turkey, fish(minimally) raw vegetables to balance out these two quirks. I have found many fruits to be way to acidic. I have not ignored what people say to me about food but I have learned what works for others does not always work for me. Inevitably I find myself going back to the old reliables. Today I want to talk about the old reliables. My breakfast often consists of toast with peanut butter and a sliced banana on it. I drink Earl Gray tea with that. Please tell us what your old reliable is.

We all know that diet and exercise is important. We also know that sarcoid has made this a day to day thing. We try to do what others say is right. It often doesn’t work. We research and experiment only to fall back because we are under attack by an unscrupulous demon. I enjoyed the last breath of words from Martin Luther King Jr. in this speech. These are very important words, he says: “walk together children and we shall over come!”

Tell us how you walk and what is that one item of food you can fall back on to give you comfort and sustenance.

Please enjoy: “We Shall Overcome” – Martin Luther King, Jr.

Day 10

On the tenth day of this 12 day event I started out making a list of my Dr.’s. Much to my amazement they have ALL retired and moved on. Just recently I walked into my family practice clinic. There was a substitute Dr. We started to talk. He knew more about sarcoidosis then any Dr I had ever met. I asked him How could he become my regular Dr. ? He said, “sorry, I am just filling in,” at the end of this month I retire.

Dr.’s have been a bit of a frustration. Maybe not the Dr. so much as the system that connects Dr.’s to patients. On the Facebook page Sarcoidosis I have listed the best sources of information for me in this last year. Please share with the rest of us where you get the greatest help.

Because so much of my life with sarcoid has been improvised I share an Improvisation of We shall Overcome.

Please enjoy: Improvisation on We Shall Overcome- Organ Postlude

Day 11

On the eleventh day of this event please take time to think about your support group. It will always be true that some people will be surrounded with an excellent support group while others will have minimal support. Some support groups may be large but have minimal effect in providing support while other groups may be small but the chemistry is fabulous. What it comes down to is not how much energy any group can offer or how much energy any one person can offer. It is about synergy and how people react and respond to one another. Sometimes all it takes is to know that someone else knows. Your support group may be just one other person. As long as you feel safe and there is a special chemistry that strengthens both of you that has to be good for both of you. If one person leeches themselves to another and ends up dragging the other person down that is not support. Each person needs to be intentional about how they give to others as well as how they receive from others. Please take time to either share the name and information about the support group you are a part of or take time to connect on the internet with an existing support group. Below in the comment section I will be listing a number of online groups. Remember some of these groups are closed groups. Some will be open groups. Please respect the nature of each group. There are times when that one person or one group comes along. They put perspective on life that brings healing and “okayedness” about life. One such person for me has been Louis Armstrong.

Please enjoy: Louis Armstrong singing We Shall Overcome 

Day 12

On the 12th and final day you are asked to consider how each of the days work together. Look at each day as a piece of a puzzle. As you do you have a list of subjects you can share in an INVITATION LETTER to help dignify the struggle with working toward an understanding of the “realities” of sarcoidosis.

Dear ……….,

You are not the only person trying to come to grips with this disease. I have sarcoidosis. It is a disease that has baffled medical science since the beginning of time. Because you are a person who has asked about my illness I want to share these basic thoughts with you. Over a period of 12 days over 100 people discussed this disease. During those 12 days people viewed and commented on the daily subjects many times. Here is a listing of each daily subject.

Day 1 Sarcoidosis can no longer be considered a rare disease and is now becoming the focus of research and medical discussion.

Day 2 Often sarcoidosis is misdiagnosed, in fact, a diagnosis does not often happen until the disease has entrenched itself in destructive patterns.

Day 3 People with sarcoidosis are often described by others as not looking sick. Sarcoidosis as a disease hence becomes minimized, and each person with sarcoidosis becomes marginalized.

Day 4 Very powerful and potentially destructive medications become the tools of last resort.

Day 5 Limitations caused by sarcoidosis are a reality. These limitations become debilitating over time and do not follow any one specific pattern.

Day 6 Guilt and isolation are two subjects that are constant companions of the person with sarcoidosis.

Day 7 Inspiration and motivation for the person with sarcoidosis often come in small dosages from “regular” people.

Day 8 Sarcoidosis affects the whole family and/or circle of friends.

Day 9 Food.

Day 10 General practitioners often see very little and understand very little about sarcoidosis. Historically the medical profession has often worked in isolation but now specialized departments and clinics are evolving.

Day 11 People with sarcoidosis need support via the medical profession and through groups that are developing.

Day 12 Understanding sarcoidosis will take time and effort. It should not be done in isolation. I wish you success as you learn together.

In conclusion I do not believe these subjects are exhaustive. I do believe what people have shared give a very good introduction to sarcoidosis.

I turn now to a message that is ageless, sung by one one of the most revered singers in modern history, Mahalia Jackson singing We Shall Overcome

Comments

One Comment on "12 days that changed the world! well not really but….."

  1. Judith king says:

    Thank you for all your hard work in compiling this information. It helps us realise we are not alone in this even though it feels like it most of the time.


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