Category Archives: Sarcoidosis

Living with Sarcoidosis – Kallina

I haven’t been to war, but I have scars,
It’s these scars that tell my story, I survived!!!

A most delightful interview with a young lady about to be wed!
Living with Sarcoidosis – Kallina

Here is another interview based on conversations about Sarcoidosis on Facebook. It is my hope that as people have more and more words they can be empowered to speak with medical people. In time we will discover patterns that will be beneficial in both the diagnosis and treatment of sarcosidosis. The interviewer is Carl DeLine, administrator of the group Sarcoidosis and the interviewee is KALLINA SATHABRIDGE.

KALLINA, thank you for being willing to share with us. It is my hope that as we talk this conversation will prompt others to think of specifics they can share as well. This will be an open forum and is not intended to reveal “personal” information other then what is opinion, concept, or historical information relevant to the words/conversation we are having.

Before I post this interview I want to say the usual questions I raise were very quickly moved away from as Kallina related a very difficult part of her story. A part that so many of us will understand and identify with.

carl: Kallina, where do you call home?

KALLINA: I am from South Africa.

carl: what type of work do you do

KALLINA: I’m a business manager more specialized in sales and marketing.

carl: When were you first diagnosed with sarcoidosis?

KALLINA: 30 January 2008

carl: How did sarcoidosis present itself?

KALLINA: So this is my story ….on the 8th of January i felt a lump in my neck area. I went to my GP and he sent me for Xrays. I know instantly when they called me to do my Xrays again that there was something wrong with me.

I remember my prognosis was TB, lymphoma or sarcoidosis…..

my GP referred me to a specialist.

I had to wait two weeks before a got an appointment with a specialist.

On the 22 Jan which is also my birthday i met with the specialist and after looking at my Xrays said i need a biopsy….so i was admitted into hospital the next day.

My biopsy was done and was diagnosed with sarcoidosis….at that time….i referred to it as sarcoid WHAT!!!!!

he he he

I was 28 years old

carl: same age as me when I was diagnosed

KALLINA: and how long are you living with it

carl: I am now 63.

KALLINA: wow that is awesome and can i turn this interview around….how has the journey been?

carl: I will answer all the questions you want. But please finish your story. I get to relive some of my story through you.

KALLINA:and sooooo my journey began…….

carl: What road has sarc taken you? what have been some of the symptoms and eventual outbreaks?

if u want to while i am busy typing read my blog

carl: great where?


Over the Bridge

I haven’t written in a while though but its outlines my journey with sarc.

I went through a journey of hate….self hate and hating the world….why me????


my family couldn’t understand and neither could anybody else believe I am sick

but in fact to them I really wasn’t sick.

carl: wow-hate is a stroooong word, you obviously, by the words in your blog have moved on

KALLINA: Yes hate is a strong word but i really felt that way…

i felt like i had my whole life ahead of me and its going to fall apart

this was mainly due to me being uneducated about sarcoidosis…..

carl: so how did you start to glue it back together?

KALLINA: there was no information available in South Africa

and i tried to get into contact with people from here also living with sarc but with no luck.

thats why i started my group Sarcoidosis SA

carl: Tell us (me ) about your group? What is the name and how has your group been helpful. SARCOIDOSIS SA -LETS BEAT THIS!!!

KALLINA: I started to learn…about sarc my body and other people that have it. I started many friends around the world…and then i got hope….Linda Ann was my first contact and Stephen Waugh…they made me feel better and that there was hope.

carl: what happened?

KALLINA: My group was intended for people in South Africa to share our experiences and to connect but unfortunately there are not many of us here but i connected with lots of other people around the world.

carl: what parts of their stories connected with you?

KALLINA: the fact that we had sarcoidosis

They were young also but living normal lives

carl: Your blog: Over the bridge – Winds of change brings us to the words of identification, denial and acceptance. Did your new found friends talk about these things as well?

carl: what is normal- it sounded a bit like others were not accepting of your illness yet you knew differently?

KALLINA: yes as i said in my community we don’t talk about illness and if you “have” something is all hush hush….

It was the usual oh you have a disease….then a look of horror

carl: —-in my head I am remembering- it has been so long.. what is unique about your background?

Im Indian. The Indian culture, we have a close minded background,

carl: like leprosy to be ill—-I feel like someone just stuck a dagger into my chest—-I remember-wow

KALLINA: Indians don’t talk about “bad” things

carl: yes- a culture in denial

KALLINA: U become like the talk of the families….they would say things like did u hear Kallina is sick….and they would go oh what did she do? and then its shame such a nice girl sooo sad

carl: Oh Kallina- with sarc, among my Indian friends I had become “dung”

rejected – untrusted

KALLINA: Sooo u understand….good

carl: nothing Is good about it- I am so sorry for your pain

KALLINA: at the time i had a boyfriend…and on those days when i didn’t feel well he would tell me get up you got things to do…get up and stop pretending

carl: if this is too painful it is up to you about what part of this we tell or write

yours has been a journey of discovery

KALLINA: you can write it all… I am not ashamed…I have embraced who I am and what I have become and my fight to survive…I’m a survivor and if you don’t respect that then you don’t know where I came from …thats my motto

carl: OK- then I will with your permissionI will turn the interview and share with you a new thought

I find listening to you so exciting —- you are on a very special journey!

KALLINA: yes it is…i must say sarc has definitely added a spicy dimension to my life

in many ways sarc is destructive- terrible. I have discovered the climb out of the valley has so much to offer

yes and wow i have become a better person because of it…the fight…the strength the will to get out of bed kicking and screaming too

carl: LOLOL tears of laughter – yes

yes true….a roller coaster ride

carl: OK I am starting a new page called Join me in the Expedition – the journey to discovery

The idea is to daily discuss what you are discovering in your life and life around you

how sarc has been the lenses toward this revelation

does this make sense to you?

KALLINA: Yes I understand fully

carl: I know this is real to you. Can you reflect on how sarc has given you a different/special insight into life

KALLINA: When people say live each day to the fullest….ppl normally has flashes of a holiday or money bags or the most expensive things in life

When I say live life to the fullest….its being kind…smiling that your jaw hurt…helping somebody less fortunate…and most of all be appreciative that you have got one more day

carl: thank you- I speak of the integrity of each moment, the integrity of creation- does this spark a thought for you?

KALLINA: Yes….treat others like you would want to be treated and will be treat you the way u want to be treated…..

if you are kinder then somebody will be kinder to u

its the circle of karmic action

carl: you mentioned your own sense of brokenness – how do you see your brokenness opening you to a richer life?

not money

KALLINA: he he he i never think money.

I am trying to inspire…motivate and even make a difference in some way in the lives of other people

I started with my sarc group creating those little pics with sayings trying to build awareness and give hope

carl: keep talking–I don’t want to interrupt

KALLINA: so well i must tell you that I have been so lucky and blessed .

I have very like symptoms of sarc and almost no pain except for my legs

so i figured and also believe that everything happens for a reason…if the bad comes into your life for a reason

Also there are so many sarc survivors that have it bad….and if I can give them a smile or hope on that bad day with a pic then thats awesome

I’m shutting off now but will carry on ….see u soon

carl: Kallina and I have moved toward the purpose of the new page being created. We will continue this discussion at a later time. But please understand what she is saying. Her’s is a very special word to each of us.


Living with Sarcoidosis – Jaz

Here is another interview based on conversations about Sarcoidosis on Facebook. It is my hope that as people have more and more words they can be empowered to speak with medical people. In time we will discover patterns that will be beneficial in both the diagnosis and treatment of sarcosidosis. The interviewer is Carl DeLine, administrator of the group Sarcoidosis and the interviewee is Jaz Owens.

Jaz, thank you for being willing to share with us. It is my hope that as we talk this conversation will prompt others to think of specifics they can share as well. This will be an open forum and is not intended to reveal “personal” information other then what is opinion, concept, or historical information relevant to the words/conversation we are having.

carl:  Jaz, I love that name, what is the story behind your name?

JAZ:  HaHaHa, it’s complicated but it’s catchy and it works!

carl:  It does. You have a lot of friends here on line. Jaz works! Others feel the same way. So often when I ask a question someone will say- well Jaz knows that! You are very well respected. How long have you been diagnosed with sarcoidosis?

JAZ:  WOW I had no idea! I just share what I can when I can and if I don’t know I go to those who do! I’m glad to know that I’ve had at least a small positive influence with people!

JAZ:  I was diagnosed with Sarcoidosis May 5, 2006 but in retrospect after learning what I now know about Sarcoidosis I believe my symptoms started in the Summer of 2001 when I was pregnant with my 12 year old son.

carl:  In what ways has sarcoidosis affected your daily living?

JAZ:  Well of course with Sarcoid things are very unpredictable and over the years my struggles have varied from extreme to not so extreme. The unpredictability of the extreme fatigue has been the worst of it all for me … Not knowing if when I wake up in the morning I will be able to successfully have a “normal” day (whatever that is) LOL!

JAZ:  When I was working every day on a 9 to 5 I was challenged with completing my daily work on the computer because Sarcoidosis likes to attack my hands & wrists when it flares. I think the looming of mystery and not knowing if Sarcoidosis will be to my demise has been a challenge to keep a handle on

carl:  As I said earlier, so many people here on line have a deep respect and appreciation for you. How has your sarcoidoidal life experience taught you to deal with life?

JAZ:  It has taught me that keeping a positive mind is my strongest weapon of defense coupled with my faith to effectively battle this disease! I always push myself to keep going even on the worst of days when possible because I’m determined to not let Sarcoidosis take over my life! I mean let me be real, it does have the power to dictate sometimes but during the moments that I over power it with my will I do!! All though I’ve always known this, it has reminded me that every moment, every day is precious and shouldn’t be taken for granted and that the love, understanding and support of family and friends is priceless!

JAZ:  It has also taught me that there are good people in the world and that silver linings exists around every cloud.

JAZ:  All though having Sarcoidosis SUCKS, I’ve met some WONDERFUL people because of it and some have become like family to me and they have helped me forge through … We’ve helped each other!

carl:  You have started a group here on Facebook. You have a very inviting name for that group. Please share the name and the significance of that name to you.

JAZ:  I chose the name A Song for Life Sarcoidosis Foundation because “Music is Magical” … Music has the ability to bring people together that would not otherwise come together, it has the power to heal and it has the magic ability to take us places in our minds and hearts like nothing else does! That’s what I want to do with ASFL, I want to bring people together for the cause and provide a positive platform for people to learn, share and give back to help make strides with Sarcoidosis! Initially, I started out putting on a Sarcoidosis Benefit Concert and my goal was to have one annually but due to the lack of funds I have been unable to continue it, but it’s still my goal and I hope to resume with it soon! I have always loved music and have been around it personally and professionally off and on my entire life and it just felt right for me!

JAZ:  Love it!!! It has the magic ability to take us places in our minds and hearts like nothing else does! When you allow yourself to go there and you think about sarcoidosis what thoughts come to mind.

carl:  Wave that magic wand and tell us the positive things you see happening.

JAZ:  Well I like to envision more camaraderie within the Sarcoidosis community. More of us coming together and working better together … For some reason their tends to be an energy of competition that exists among various groups and with individuals and that just holds us back! I hope to see us working better together. I really see broader recognition and awareness on the rise with Sarcoidosis … It’s been slow moving but inch by inch awareness is gaining momentum. I would like to see some breakthroughs in terms of alternative disease management … Less toxic treatments that offer better results of relief for patients! That’s one of my goals is to find and share alternative options that may exist. Of course in my most magical imagination I hope to see a definite cause and cure found in my lifetime!

carl:  I share your dream for working together. For that reason I am inviting leaders from other groups to share their vision and create joint dialogue. This group is moving toward entertaining a servant model. We will together do everything we can to reach the ultimate cause and cure!

carl:  As group leader what are some of the “traditional” concerns that keep popping up?

JAZ:  Boy, where do I start? Lack of financial support &/or benefits for Sarcoidosis Sufferers who are unable to hold down a regular job and have trouble getting approved for Disability Benefits. Unknowledgeable doctors who don’t do their due diligence about Sarcoidosis. The overwhelming concern about the overall affects of the medications patients are being treated with. Lack of support groups The list could go on …

carl:  For a moment lets imagine you are standing before a United Nations sub committee they want you to make a plea to the global community about the growing cause and awareness of sarcoidosis, you have 1 minute, you are on global network television-say your words lady:

JAZ:  Oh boy Carl I’m not prepared for this question … LOL! I’m not gonna try to be elegant in my answer I will just make a basic point that I believe “The World” needs to get … Sarcoidosis is a Silent Epidemic that is mysteriously claiming the lives of people around the Globe and can no longer be ignored!! It’s imperative to our families and communities that the Leaders of the World stand up and put their minds and resources together and help give Sarcoidosis Sufferers the ammunition needed to effectively fight to put an end to Sarcoidosis once and for all!

carl:  In years past people on Facebook has opened the door for groups to put issues in front of people. My goal in presenting the interview is to talk about the little things and show everyone how important these little things are.  I am moved and appreciative to have heard from all that is Jaz

carl:  Do you have other thoughts you want to share?

JAZ:  Aww, thanks Carl! I as I’m sure others appreciate your efforts in the cause for Sarcoidosis. If I could leave people with something it would be to continue, to Keep the Faith, Support One Another and to know this fight is Not a Competition! We are in this ring TOGETHER and we are only as strong as our weakest link! Lets share, help and uplift one another and recognize everybody has a gift to share … Where one is weak and unknowledgeable another is strong and full of wisdom, we need to recognize and remember that!

carl:  Take a hug lady.  Thank you.




Living With Sarcoidosis- Cristal

Here is yet another interview based on words from previous conversations with the Sarcoidosis group on Facebook. It is my hope that as people have more and more words you can be more and more empowered as you talk with your medical people. In time we will discover patterns that will be beneficial in both the diagnosis and treatment of sarcoidosis. The interviewer is Carl DeLine, Administrator of the group Sarcoidosis. The interviewee is Cristal Davis.

Hello Cristal, thank you for sharing with us. It is my hope that as we talk it will prompt others to think of specifics they can share as well. This will be an open forum and is not intended to reveal “personal” information other then what is opinion, concept, or historical information relevant to the words/conversation we are having in the the Facebook group called Sarcoidosis. Because this is an open group our discussion will be available for all to see. Thank you again for being willing to share in this venue.

carl How long have you been diagnosed with sarcoidosis?

CRISTAL I was told I had it in 2009.

carl In what ways has sarcoidosis slowed you down?

CRISTAL Sarcoidosis has slowed me down in many ways. Taking steroids caused me to have avn in my hips so its hard for me to walk distance. i get so tired doing anything if its shower day just taking one causes the rest of the day to stop. my line of work i was a cook in big restaurants i cant move like that no more cause sarc causes me to be slow and give out.

carl what is avn?

CRISTAL Vascular necrosis (Avascular necrosis is the death of bone tissue due to a lack of blood supply. Also called osteonecrosis, avascular necrosis can lead to tiny breaks in the bone and the bone’s eventual collapse.)

carl You have started a group here on line. Tell us the name of that group and what makes that group special.

CRISTAL yes my support group is called Promote Courage for People with Sarcoidosis, what makes my group special is we are a family unit that is there for each other no matter what. I am not only a founder I am on call 24/7 just to bring a smile or to listen cause you are having a bad day. I am for the patient I care with all my heart. This group is here to promote courage to fight another day!

carl Where is home for you?

CRISTAL Augusta Georgia

carl Have you ever lived anywhere else?

CRISTAL Oh yes, I am a military brat!

carl Some people are asking if sarcoidosis may be brought on by the environment. Have you identified any similarities between the members of your group and yourself that reflect issues that may be environmental in nature?

CRISTAL I believe my environment plays a big role in my sarc life especially if i can go outside.

carl How so? Do you see such things as weather, climate, chemical plants, smog etc affecting you?

CRISTAL Here summer I have a lot of ups and downs, it is really hot and the humidity is really bad. Winter I love it, I can breathe because we don’t really have bad ones.

carl I really like the name you have given your group. Can you say more about how you hear people expressing words of courage?

CRISTAL Always I even get like that but we just need to open our hearts and listen and let people know its going to be ok, maybe not tomorrow or next week but we have to build our self up and keep telling ourself that we are strong and because of us one day someone else my not have to suffer. The key is to always know that that we survived the day, tomorrow is tomorrow.

carl Thank you so much for sharing that really important thought- we are here for the next generation of sarc people. The number is increasing so quickly. I believe I heard somewhere there are almost 300,000 people in USA alone with sarc. It takes courage to live with this but also courage to stay in the face of the system.

carl What do you think will be the best help with sarcoidosis?

CRISTAL Well I guess it goes as the old saying goes different strokes for different folks but for me I do what what Drs say to do but I add my own kick, I use a heated blanket for instead of heating pad cause it covers more area for leg pains and instead of laying in bed I get up and try to keep my life as normal as possible.

carl What does normal mean for you?

CRISTAL Normal is trying to maintain everyday life. Sometimes it don’t work out that day. At least you tried and you tried to stay positive, we all know that its hard, it sucks, its painful but even when you think you don’t want to do it no more reach out and talk cause somewhere in that talk you will find something to laugh about in this illness.

carl If you could identify some helpful patterns what would they be and how do they help you?

CRISTAL Patterns are hard, cause to be honest you never know what a moment will bring with this illness!

carl Another question comes to mind. It deals with mental and emotional help. We know you help so many others, how helpful is it to know you have this special purpose in life?

CRISTAL Two years ago I thought there was no way I could go on. I just didn’t want to do it anymore. My life sucked, My health sucked, everything, was never in my mind going to return to normal again. Then I thought about it and I realized that what made me me was helping others and fighting for awareness that brought me out the slump. That purpose helps me a lot, it makes me feel like I did something that even if I can’t do my old life I can at least help others

carl Yessssss! So you also find energy and strength from helping. How many groups are you a part of?

Cristal I am part of a lot but not active. I am very picky, I don’t do drama, we have enough to deal with. I want to be apart of them all but running my own group and making them number one is big. As a founder I think you should be very attentive in your group.

carl What kind of education would you like to see available to sarc people, doctors, family etc. ?

Cristal Patients teaching Drs what it is really like to live a moment in our shoes. Also more things for people with sarc, like resources.

carl What do you mean by resources?

CRISTAL Places like cancer centers have more things to help with the every day fight, something to just help us live a little easier. We fight hard, even getting SSI to fight for us.

CRISTAL I want to see shirts and items in stores, shirts raising awareness,
I want us to let people know this is real we are here, self image building!
Cancer sells in stores, why cant we? … a breast cancer ribbon, shirt, oh its real! why cant there be a purple ribbons, shirts that says sarc awareness?
I want public awareness public knowedlge of us!

carl As I listen to you and others there seems to be something like a curtain hiding this knowledge-it is kind of like the lets make a deal tv show. What is behind curtain # but then a commercial comes and curtain # never gets revealed. Join us next week to find out what is behind curtain #. The schedule changes and next week never comes.


carl powerful feelings

CRISTAL I for one want to change that but how?

carl To re-say the introduction, Thank you for sharing with us. It is my hope that as we talk it will prompt others to think of specifics they can share as well. This will be an open forum and is not intended to reveal “personal” information other then what is opinion, concept, or historical information relevant to the words/conversation we are having. Because this is an open group our discussion, your comments, will be available for all to see.
The interview content from your returned email to me is what will be posted. Do I have your permission to post this interview?* Thank you again.
* Because Facebook claims ownership of everything on their site (with your permission) I will also post this on my personal blogsite. This will guarantee the integrity of the whole interview as approved by you.
Carl DeLine

Living with Sarcoidosis – Wayne

Here is the second interview based on previous conversations with the Sarcoidosis group on Facebook. It is my hope that as people have more and more words you can be more and more empowered as you talk with your medical people. In time we will discover patterns that will be beneficial in both the diagnosis and treatment of sarcosidosis. The interviewer is Carl DeLine, administrator of the group Sarcoidosis and the interviewee is Wayne Hunter.

Wayne, thank you for being willing to share with us. It is my hope that as we talk this conversation will prompt others to think of specifics they can share as well. This will be an open forum and is not intended to reveal “personal” information other then what is opinion, concept, or historical information relevant to the words/conversation we are having. Because this is an open group our discussion, your comments, will be available for all to see.


carl:  My first statement is to say thank you for the help you give to so many. I believe you are an administrator on a number of pages and member on others. How many groups are you participating with.

WAYNE:  At last count, between Facebook, Yahoo Groups, and local Sarcoidosis Support Groups, I participate in 16 different Sarcoidosis Support groups.

carl:  Again I want to say thank you for all the support and insights you share with so many of us.
when were you first diagnosed with sarc and how many different areas of you have been ‘attacked?’

WAYNE,  I was first “Officially” diagnosed in 2000. I have had Sarc problems since around 1980, but undiagnosed. For me, it is easier to say where I have NOT had Sarcoidosis since it has been all over my body. I am lucky because it has not significantly affected eyes, brain, liver, spleen, or heart.

carl:  You have lived in a number of different places. How has the temp and atmosphere affected you?

WAYNE:   I can’t say that weather significantly affects my Sarcoidosis. I do have some joints that ache with weather changes, but that happens everywhere I have lived.

carl:  As you have been administering pages have you ever been surprised by the stories or questions people ask?

WAYNE:   Yes. Early on when I was still learning about my Sarcoidosis, I was greatly surprised by people saying that they had problems outside the lungs due to all of the information on the web and that I could find. Once I learned that Sarcoidosis is an Immune System Disorder, I understood that it is everywhere in the body, so it can do very strange things.

carl:  How has all this “junk” affected your state of mind? Do you wrestle with depression at all, much, never?

WAYNE:   I learned from an accident with a crane that fell on the back of my head and almost killed me that the mind is not really as strong as we think. After that experience, I had already learned to use Mental Health professionals to help me cope with life changes. Sarcoidosis was just a new life change to add to my list.

carl:  great point, I am sorry to hear about the head injury.  What advice would you give the younger and newer members about using the online groups?

WAYNE:   Please read all you can from the groups because there is more experience with Sarcoidosis from the people who live with it daily than all the Drs in the world. Then, ask questions. Sarcoidosis can do so many things that there is no way that any information out there can cover all the problems and symptoms. Then, be willing to share what you learn with YOUR DOCTOR and discuss this with him or her.

carl:  Wayne, when you think of diet whether self imposed or prescribed from the Dr. what have been your favorite foods, your patterns around an eating schedule? You are one of the people in this group who has lived the longest with sarcoid, what would you encourage others to not do when it comes to eating?

WAYNE:   Diet is just another part of the experiment of treating Sarcoidosis. The main thing about diet is to make sure your Dr knows exactly what you are doing so that if it works or if it makes you worse, they can use that information to help them design the next treatment experiment for “YOU”!!! I used to be the “Garbage Disposal” around our house. I could, and did, eat anything, and everything, and never gained weight before Sarcoidosis. After Sarc, and especially Predni-Crap, I gained 50 pounds. Because the treatment and medications affect the body, YOU have to be willing to experiment with different diets, foods, etc. to figure out what works for YOU and for each different medication you take. As with anything when you have Sarcoidosis, there is NO SINGLE ANSWER that works for everyone. You have to experiment and find out what makes YOU better, what makes YOU worse, and what has no affect. Because many of the treatment medicines make us gain weight, YOU also have to learn to ignore the people who try to mentally abuse you about weight and learn to live with the ups and downs of weight with treatment. The mental fight with Sarc is another topic.

carl:  Good point, what are the “tools” you use to maintain as much stability as possible? Included in that, have you found yourself becoming a bit of a recluse?

WAYNE:   The main tools I use to maintain as much stability as possible with Sarc are:
1) Learn as much as you possibly can about the disease from your Drs., research online, and support groups. Try to participate in at least 2 support groups if you have the time and energy.
2) Find a GOOD General Practitioner (PCP) for your personal Dr. Things that make a good GP are that they listen to you, believe you, are willing to admit when they don’t know something but are willing to research it for you, and are willing to refer you to specialists as well as manage all the specialists, reports, and coordinate medications for you so that you don’t get medications from different Drs that should not be taken together.
3) Research the medications to learn about side effects and risks. Understand that side effects may be dose dependent, so they may never occur to you, but be prepared if they do so you can let your Dr know immediately. Your pharmacist is a good person to meet and become friends with as they are a good source of information about medications, side effects, and interactions.
4) When being provided with a new treatment or medication, be ready to ask questions about what the dose, is this a large or small dose, and how long will I be on the medicine to know whether it will work or not?         5) Keep a diary or log of any new symptoms, medications, and changes that occur. Make sure you have this with you for all appointments.
6) Write down any questions you have for a Dr BEFORE you go for an appointment. When you are with the Dr and they are doing all their tests, it is easy to forget things that are important or that you need information about. I often write down my questions and give them to the nurse when she is done doing the Blood Pressure and other tests. She puts this with my record so that the Dr can look at my changes and questions before she comes into the exam room. That way, she has time to prepare if she does not know the answer to the questions or to put together a list of any new tests she wants done based on new symptoms.

carl:  These are excellent points. Are you comfortable sharing about how your family has made adjustments to all this?

WAYNE:   My family has had many rough times getting to know the new “ME” and live with both the Sarcoidosis and Predni-Crap!!! I have learned that not only do I need Mental Health treatment, but the entire family needs this treatment. The family has just as much need for grief counseling as the patient, because they have also lost a person they loved and knew to this disease and to the treatment medications. We, as patients, often forget that our children also get scared that they will permanently lose a Mommy or Daddy to this Friendly Green Monster. We also need to do family sessions because we need to be able to discuss our fears and frustrations with a “referee” in the room to keep the discussion civil. If it were not for family counseling sessions, I am sure that I would not be living with my wife today and getting ready to celebrate our 39th wedding anniversary.

carl:  Thanks for your honesty. This is a very special answer for me.

carl:  When you think of your support groups, I know you are a part of quite a few, can you share them with us and how this ‘cross-fertilization’ of words has been helpful?

WAYNE:   I would be willing to share all of the groups with you and others on this site. We can discuss how would be best to do that, either in posts or in a File.

WAYNE:   While I have had Sarcoidosis for over 30 years and diagnosed for over 10 years, I still learn new things about Sarcoidosis, new treatment medications, new diets, new symptoms, and new friends (unfortunately) from my participation in online and local Sarcoidosis support groups. Even the Drs who specialize in the treatment of ONLY SARCOIDOSIS don’t know everything about it. I often copy things from the groups and send it to my Sarc Specialist at Johns Hopkins to ask if it is from Sarc or something else. This helps him see possible new symptoms that this Monster can cause or learn about new treatments. While he only treats Sarcoidosis and researches it, he does not have time to search through all the medical documents to look for new Sarcoidosis papers published in the world. So, by having so many dedicated Sarc people in the world on all the different support groups, I often get knowledge before the experts. Then, I try to share this with all the groups to spread the knowledge to other Sarcies as well as Drs.

carl:  If you could wave a magic wand describe what you would see as the elements necessary to educate a. self, b. family, c. medical staff, d. foundation people e. government. just a short question .

WAYNE:   Necessary education for the patient requires an international Sarcoidosis organization that can simplify the medical reports to a level that the average person can read and understand. The biggest issue is that there is no coordinated International organization at any level or any country specifically designated for Sarc for funding or work. Without an organized effort, the patient can’t educate the family because they are too busy trying to get healthy. The WASOG is just starting to get active and get formed in the last 3 years. There are way to many problems and different organs involved in Sarc for the few researchers to actually even scratch the surface. I can’t pinpoint the problems with the foundation. Coordination and leadership to get local groups organized and funded is probably the biggest problems. Without a good National and International coordination at the foundation level, we don’t have any political organization and clout. We also need a person with Media connections to admit they have Sarc before they die and coordinate the media advertising and campaign for Sarcoidosis funding and research.. All the actors, pro athletes, etc., don’t want to admit they have it because it doesn’t kill, so no pressure to get it funded and advertised. The Golden nugget hiding in the wings is in the Netherlands. They are now the Worldwide Research Program for Sarcoidosis due to King Willem-Alexander having Sarcoidosis. He may be the catalyst that Sarcoidosis needs to get organized, funded, and supportive of the patients.

Just a short answer!!

carl:  lol-  there just never has been any short answers. Thank you for taking time to share.

carl To re-say the introduction, Thank you for sharing with us. It is my hope that as we talk it will prompt others to think of specifics they can share as well. This will be an open forum and is not intended to reveal “personal” information other then what is opinion, concept, or historical information relevant to the words/conversation we are having. Because this is an open group our discussion, your comments, will be available for all to see.

The interview content from your returned email to me is what will be posted. Do I have your permission to post this interview?* Thank you again.

* Because Facebook claims ownership of everything on their site (with your permission) I will also post this on my personal blogsite. This will guarantee the integrity of the whole interview as approved by you.

Carl DeLine

Living with Sarcoidosis: Jacki

Here is an interview based on last weeks conversations concerning Sarcoidosis. This interview has been posted on the group Sarcoidosis on Facebook. It is my hope that as we have more and more words you can be more and more empowered as you talk with your medical people. In time we will discover patterns that will be beneficial in both the diagnosis and treatment of sarcosidosis. The interviewer is Carl DeLine, administrator of the group Sarcoidosis and the interviewee is Jacki Cindy Hemmings Parsons

carl   Hello Jacki,

carl   Thank you for sharing with us. It is my hope that as we talk it will prompt others to think of specifics they can share as well. This will be an open forum and is not intended to reveal “personal” information other then what is opinion, concept, or historical information relevant to the words/conversation we are having. Because this is an open group our discussion will be available for all to see. Thank you again.

carl   How long have you been diagnosed with sarcoidosis?

Jacki   Diagnosed in May this year.

Sorry should be last year now. Just over 7 months

carl   Was this diagnosis done in hospital?

Jacki   Yes. Had a CT scan to put my mind at rest as they thought it was just a sinus problem. This showed nodules in lungs and swollen lymph glands. Told it could be cancer or sarc. Had an FNA which was inconclusive so then a gland removed from the supraclavicular region which presented with Sarcoidosis.

carl   What is an FNA?

Jacki   Fine needle aspiration. They go down through the throat, airway or feeding tube to take a biopsy.

carl   At the time of diagnosis, what type of support was discussed with you?

Jacki   None. I went online and found two sites myself. Had never heard of it so needed to find out as much as I could.

carl   Now that you are beginning to understand more, what kind of support do you believe will be helpful? My next question will arise out of your words so say as much as you want here.

Jacki   If my gp knew more it would be useful. Out of 11,000 patients there are 9 of us with it. They are fantastic but I have to feed back to them anything I find out. Local support groups, there was one running in a town about 30 minutes away but it’s since folded as the lady in charge is poorly. There’s one in London once a month but it means travelling by train etc at night after work. Knowing exactly where to look for literature would be good too. My nearest sarc clinic is in London too, my local hospital has no experts .

carl   Thank you, excellent description.

carl   As I listen to the group these are the consistent words I hear.
1. On line,
2. local clinic/hospital,
3. neighbor or client based group,
4. library type resources,
5. some type of way to have medical people hear the story process.

How do you think these group situations would be of benefit to you?

Jacki   I think they would all be beneficial. Whilst the online groups can literally be a lifesaver I do find I while away too much time with them now I have a more up to date phone. I really should get on with other things. A local clinic/hospital would be ideal as travel is obviously tiring. Neighbour or client based group would mean you could set aside that time and speaking with people face to face is sometimes easier. I have met with another lady with sarc who lives across town and her son goes to the school I work at, so we have now other topics to chat about when we meet which is nice. Library resources, I would love as I do like a good read! A way for the medical profession to listen….maybe open meetings with ‘them and us’. I have begun to keep a log-these could be shared and compared. I think at some stage we all feel very alone, I certainly had some very dark days in the beginning but the more I find out the better I am able to cope now.

carl   Thank you, I will now move on to the next thought. How has the willingness of others to share their story benefited you?

Jacki   Enormously! All the ailments that have cropped up over the last 8 years or so are coming together to complete the jigsaw when others bring them up. I gain strength from seeing how others cope and don’t feel so alone.

carl   yes, it is like being in a room full of people and standing there while others talk right by you, and other times as if they walk right through you not knowing you are there.

carl   just a point of clarification. 7 months or 7 years.

Jacki   indeed.

Jacki   7 months diagnosed but I believe from my symptoms it was triggered by my hysterectomy back in Feb 2005.

carl   That is a long gestation period for a diagnosis.

carl   This leads me to the next point of mental health. Others often have a hard time living with our sarcoidosis. Can you share a little on how that “relational ambiguity” may have affected how you survived?

Jacki   Again the putting together of all the pieces-symptoms.

carl   By the way we have almost reached the 1 hour time I asked for. I can continue but want to be sensitive to your time.

Jacki   Not sure if I understand you but here goes.

Jacki   I’m fine for time.

Jacki   Having a diagnosis made everything a lot easier. My husband-who had by now moved out- researched it which enabled him to understand my behaviour etc. My eldest daughter did the same and again this has helped enormously. Another daughter will listen to everything I tell her and we can have some dark humour about it all. My son and youngest daughter(16) don’t really want to discuss it. I am much calmer now I know what is wrong with me and that I need to take things easier which means all my relationships are improving. Is that the kind of thing you mean?

carl   Right on. I believe/hope that as this group grows and develops it may empower people/families to understand that this “junk” is real and has tentacles into many facets of our lives.

Jacki   Oh my goodness it certainly does!

carl   The next question has to do with diet/food.
carl   How have you adjusted your eating patterns because of this?

Jacki   Ah now that is a good one. I had begun to replace some meals with veg and fruit juice not only lose weight but for general health as am very overweight. However, the sarc doc I saw recently who started me on steroids emphatically told me not to do this. Even though it’s almost a given that I will develop diabetes now. Unfortunately over Christmas all good intentions went by the wayside but again now portion sizes are smaller and I will be juicing because it makes me feel better. I am cutting down on wheat and dairy too because this does make a difference. I just have to lose weight as my daughter gets married in September this year and as I did nothing much more last year than sleep I didn’t manage to lose much then.

carl   I am sure the whole group will say- we understand. LOL

Jacki   haha oh yes.

carl   As I look at the remaining words I see that we have touched on most of them. I think I will stop here and give time for us as a group to ponder your GREAT input. I will now cut and paste this discussion, dress it up a little, send it back to you for approval and then post it for discussion. Can you share your email address with me and I will send a final copy to you. Thank you again for sharing. This will be a great start for us.

Jacki   It’s a pleasure, anytime. I truly believe that the more we know about this disease the better we are at coping with it.

carl   To re-say the introduction, Thank you for sharing with us. It is my hope that as we talk it will prompt others to think of specifics they can share as well. This will be an open forum and is not intended to reveal “personal” information other then what is opinion, concept, or historical information relevant to the words/conversation we are having. Because this is an open group our discussion, your comments, will be available for all to see. Your returned email to me is what will be posted. Do I have your permission to post this?* Thank you again.

* Because Facebook claims ownership of everything on their site (with your permission) I will also post this on my personal blogsite. This will guarantee the integrity of the whole interview as approved.

Carl DeLine

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

and so, an evening, a morning, a new day

This is a conversation I had with a NEW friend from Australia. She accepted me into a group from Australia that discusses the disease Sarcoidosis. It happened within the last 20 hours.


J- Welcome Carl

C- Hi Janise- thank you for your kind words.

J- This is a very supportive group.

C- i am enjoying researching and talking with people. I love my Australian friends

J- We have a wealth of knowledge between us and we need to share

C- I am developing a 12 days of Christmas sharing that will start and develop around what we want the special people in ours lives to know about sarcoidosis.

J- So what does that entail Carl ? I am curious, although i am not feeling to Christmassy this year having only just come to terms with our diagnosis’s

C- I am in the process of writing the introduction to that as we talk. I will post that introduction in a couple of minutes.

J- Ok no problem I will be back in a minute just supervising my son getting his sausages off the griller. lol risky he is probably feeding them to the dogs !!

J- what time is it over there here is is almost 8 pm and way past dinner time but better late than never !

C- It is 5:42 a.m.

J- OMG ! Ok and it is probably cold there ? Here it is summer time and we are in for a scorcher of a week almost 40 degrees and could well hit that on sunday !

C- We are not that far apart. -30 in the morning and we will warm up to about 3 or 4

J- here is the intro. does it make sense to you?

C- We are 13 days away from celebrating one of the greatest holidays of all time. It is a time to celebrate a gift of life that overcomes, a gift of life that does not dwell on the oppressions of life but on the hopes and expectations in life. It is a time to understand that out of the darkest moments comes a glimmer of light that encourages us to move toward greater light. This is not a celebration about brokenness. It is a celebration of how in the midst of a dying world one new life has made the difference. A few weeks ago I asked you to think about things you wanted to talk about. As I scanned your words and the words of people from other groups one immediate desire kept coming up. The desire was to help others understand . With that in mind I have followed various threads of thought. As I kept these thoughts in mind I found myself becoming stronger. In the next few days I hope we can share in a journey that illuminates what sarcoidosis is and how we live with it on a daily basis even though we may “not look sick.” Please identify a person you want to share this journey with, ask them to follow our collective posts and then talk together with you about it.

J- Sounds good Carl, so a wee bit cold over there is it ?

C- no this is warm. last week it was cold. lol

J- OMG !! i can’t even imagine it ! Excuse my ignorance what exactly is Sarcoidosis Carl. Myself and my now adult children have just been diagnosed with an assortment of Lyme related diagnosis 25 years post tick biters. I have joined as many sites as possible as i need to learn about what we have and absorb it has been a bit mind blowing to say the least !

C- one of the things that will come out in the next days is the “mass” confusion about what sarcoid is. The many experts add to this confusion as each expert speaks as if they have the final word.

C- sarcoid manifests itself in multiple ways and has unfortunately become a catch all term for many. the problem with this process is that the diagnosis then gets minimized, things get worse and massive amounts of steroids become the “quick fix”

J- I just googled it so is it connected/triggered by Lyme or just made worse by Lyme Carl ?

C- the quick fix doesn’t happen and then the solution begins to add a whole series of new symptoms

J- not sure what you mean ?

C- mine never had lyme even mentioned with it

C- mine apparently started in my blood

C- then went to my eyes

C- then to my lungs

C- in each case each symptom was treated

C- as things got worse sarcoidosis eventually was identified

C- treating sarcoid didn’t happen until after blood treatments, eye treatments failed

by the time the lungs were treated 70% of both lungs had been affected

long pause

C- sorry – did I lose you?

J- No I think I understand now as in no doctor ever looked at you as a whole person just bits of you and treated that ‘bit’ according to his/her area of expertise and never mind the collaterol damage it caused. Is that what you mean ?

C- yes, and what wonderful words. I hope you share those with the group as this discussion evolves. I really like how you said that.

J- Thank you Carl after what seems a lifetime of trying to get Doctors to look at both of my children as whole beings. wouldn’t it have been lovely for a doctor to step back and say “Ok now lets look at the big picture, why is this and this and this happening and what correlation do they have with one and other . It has taken a while but at last we have a lovely Lyme doctor who is doing just that and “God bless his Little Cotton Socks” ! At last !! I wish the same for us all !

C- amen sister preach it. please carry this intensity into the sarcoid group. we have a wonderful group of people who often struggle with not so much what to say but how to say it.

C- would you mind if I enter this conversation onto my blog.

Sarcoidosis | Coached By Grace

J- That’s fine Carl no problem at all.

C- thank you. and please take a hug and pass one on.

J- Thanks Carl and one for you also. stay safe and stay well and keep fighting and never ever give up !! nite


I HAVE ENTITLED THIS BLOG ENTRY  and so, an evening, a morning, a new day

The longer I live I discover more people who are living with some form of terminal illness. I hear people say, “I would just rather die. Why can’t I?” Damage is done not only to the individuals but also to the families that want to be supportive to those who are living with dying. Patients suffer guilt over the cost of time and money that doesn’t produce the miracle cure, families suffer with guilt and anger about not being able to wave that magic wand and see healing happen. Stress in relationships grow to breaking points. In the next days you are invited to join in this discussion. Sarcoidosis is only one of many diseases that has an unknown origin and an often unpredictable path of destruction. Please take the time to share your input while inviting a friend or family member to join with you at

Eighth Day of Creation: An Evening Blessing, A Morning Blessing, A New Day…

Reflections from posts and ongoing discussions on Facebook.


It is evening. Another Friday is passing in this part of the world. May God bless you, give you peace, may your families and homes be safe from the intrusions of evil and desperate acts. May you know the gentleness a good nights rest brings and may you be prepared to start another day sharing the love that our Lord fills you with. Amen.
An evening blessing, the first day.
Good morning. The night is over, a new invitation to be God’s people reaches out to us. An old song reminds me of how wonderful each day can become. For all my friends who struggle with something as minor as a head cold all the way to those who do not know if they will see tomorrow. Please enjoy: Cat Stevens – Morning has broken 1976 Morning has broken, like the first morning Blackbird has spoken, like the first bird Praise for the singing, praise for…
A morning blessing: A new day!


This evening as I take a moment to consider the discussions of the day I am moved because so many people shared so much pain. Then right in the middle of all this pain came funny moments. Not just moments to smile but moments to be blessed with a laughter that controls the very muscles of the face. I am so appreciative because Facebook has become such a gift. I have been careful to choose friends who have chosen to be a part of my life. I have lived more years with sarcoid then not living with it. Sarcoid has conditioned so many aspects of how I live. It also pushes me to work at being creative. It forces me to push my mind to clear thoughts each day and start fresh each day. I know there are moments when I don’t make sense. I know there are moments when I continue a conversation that people wonder where that comes from. Yet, you continue to stick around. Thank you. The blessing this evening is simple. May the Lord bless you and keep you, may the Lord make His face to shine upon you and as you dream may you awaken with the joy of the Lord and may that bring laughter. Amen.An evening blessing, the second day.
I overheard a conversation this morning. It went something like this. Just because you are up and awake doesn’t mean I have to get up. “Come on!” the voice said, “there are things to do, places to go, things to see.” “NO. If you want to go, go alone” the second voice said. Then I realized no one else was in the room. It was my left eye simply saying, stay in bed, I do not want to open up. It was arguing, you don’t need to listen to every crazy thought that comes into your head. Listen to the rest of your body. Pain is the norm! The covers are warm! Give into it.

The blessing for the day is simply. Light comes out of darkness, chaos clears through movement. Have a blessed day, take one step at a time, one breath at a time, allow your friends to laugh with you, and you to laugh with them. In the words of an old friend; “and may God bless you real good.” A morning blessing: A new day!


Where did the day go? It is evening already. What did I do? Was it that unimportant or was it so important that it was okay to just keep moving? Strange, there is this odd sensation of satisfaction. It is a gentle peacefulness that leaves no suspicion of not being accountable to the day. Yet, there is a strange accountability to experiencing healing by just being. Perhaps a little esoteric, perhaps a little off the wall but still a feel good moment capped by Haagen-Dazs chocolate ice cream and a chocolate chip cookie. Blessings and a good nights rest to you. Lord thank you. Amen. An evening blessing, the third day.
Morning had struck. Both eyes woke up at the same time. There was a strange presence. A question looms. Is this the beginning of the week or the end of the week? Is this a time for reflecting on the past or a time to look forward to what is coming?

The sarcoidosis in me is a cause to always be reflective, what actually happened in the past week that added meaning and joy to my life? I think of all the young people over the years who had been the castaways of life, of how I felt privileged to be a part of their lives. I think of how this has not been one week but years.

Then I look forward, understanding fully, knowing this alien creature known simply as sarcoidosis looms like a cat waiting for prey, awaiting that moment to strike, waiting to take the joy out of life. Looking to the future reminds me that the cat often forgets, the warmth of the morning sun causes the cat to doze off and the mouse runs away.

Then for me I know this is the beginning of the week. It is a time to seize the moment, a time to seek the warmth of each moment, to look forward to when the evil of the day loses its power and life can be grasped. I think of the exhilaration as momentum, a time to move ahead looking with both eyes to see what the future gives, never ignoring the evil that exists, but fulling knowing the joy that each moment grasped gives. It is a time to look forward!

May this be a day of quiet reflection. May this be a day of joyous response. May the tension between them give you a greater appreciation for the life that is yours. May God bless you and may this be a day of discovery. Amen.A morning blessing: A new day!


It has been a day. It was time to move, just like when the runner who lined up and the race was about to begin. The gun went off. Each runner appeared anxious to win the race. It was not a long race but one runner seemed especially intent. That runner took off with lightening speed, then without any perceived interference the runner just dropped. For a moment he lay there as he used every ounce of energy to stand up and continue that race. Then, slowly he pulled himself up, putting one foot in front of the other. The race was eventually over. This contestant stopped at the finish line and wondered what had happened.

In some ways I feel like that runner. I was ready for a day of discovery. Minutes into the day everything stopped. Each event seemed like a drag. There was no cohesion to what might be discovered. As the day went on little things began to break in. Moments of familiarity brought meaning. By the end of the day there was joy. Satisfaction was discovered. Joy was experienced by simply admitting that I did not have to win the race. I had done my best to finish the race.

The blessing simply is; rest in peace, know the presence of God as you have experienced strength for the day and hope for tomorrow. Amen. An evening blessing, the fourth day.
It is morning. My body is rested but my mind is exhausted. Somewhere in the middle of the night a decision was made. How often there have been times when I wanted to talk things through with someone. Each time I started the discussion it seemed to stop as fast as it started. Then in the night time the conversation happens. Sometimes there are dreams. Sometimes there are just one liners, single thoughts that leave a matter of fact conclusions. These thoughts cannot be argued, they are to be dealt with. I am reminded that today is a new day. I can only act upon what I know is true. This is the day the Lord made, let us rejoice and be glad in it. Amen. A morning blessing: A new day!


This is day five out of eight days of morning and evening reflection. I am beginning to see specific patterns as I travel through each day. Patterns that do not reflect the past so much as becoming a pattern that will lead to something new.

Lord give definition to the change that is happening. Though we walk through the valley’s of life, though we live in the shadow’s of death, may we discover the ways of light and dwell safely in this path. Amen. An evening blessing, the fifth day.
The morning. A time to rise and shine!
Wait, it is still dark outside,
the alarm hasn’t gone off,
the bed is still nice and warm,
I don’t smell breakfast being made.
Stay in bed, it is still the middle of the night!

Lord bless us with the understanding
to rest when it is time to rest and
to work when it is time to work.

May we understand that everything has
it’s season. Amen.
A morning blessing: A new day!


An evening prayer.
Lord help me to know what to take seriously,
and what to treat lightly,
help me to simply know what were aversions,
help me to know my presence had meaning, had significance.

Lord bless us,
may we together experience a fullness
that ultimately overflows,
that is beneficial
to those you have entrusted to us;
Friends, family, neighbors, people we work with,
those we share time with. Amen
An evening blessing, the sixth day.
Morning sounds are often inviting.
A percolator?

the sound of something getting hot,
the sound of something getting ready.

What a strange sound to wake up to.
Yet that is the sound that woke me this morning.

The events of the last few days,
the thoughts I have been reflecting on
cause me to understand that all aspects of an idea must be thought through.
Cause and effect needs to be given time to perk.

May God bless you as you take the time to think through
the events of the last few days.
May God bless you as you take the time percolate those ideas
that will become the foundation of your tomorrow.
A morning blessing: A new day!


There was evening, the seventh day.
A friend died, a person I only knew through
these pages and the words of those who knew her.
Today was a quiet day of sorting,
doing bill pay and catching up, getting ready for tax time.
There are certain things that have become constants in life.
The proverbial death and taxes. Here I add one more.


Images from military to baseball,
from cats to dogs,
from vehicles to puppets,
from physical cares to emotional cares,
from food for the body to food for the soul.

In all ways there seems to be multiple starting points.
There seems to be an unfettered flow of story lines.
There also seems to be an underlying trust among friends.
I don’t really know how relevant these words are
but I do know that because you have words I know that I am not alone in the darkness, in the chaos. I have someone in the morning and the evening.

Bless us Oh Lord, may we not be afraid to be there for each other
as you are for us.

Mississippi Children’s Choir – His Eye Is On The Sparrow

An evening blessing, the seventh day.


The sound of the rain, the coolness of the morning,
the anticipation of what might be.

There is a blank feeling,
is this rest or is it exhaustion?

What will the day bring?

Lord I pray for your presence today,
may you be seen in the quiet moments,
may you give strength in times of activity.
This is the day the Lord has made,
we can rest and know that there is a purpose
greater than ourselves
yet small enough to include each of us.

Today sums up the 7 days of reflection.
As I have read your posts, your input into my life
It has been immensely revealing to me.
There are so many thoughts and experiences
that could not be written. In these words I tried to present imagery
in a way that would cause you a moment of reflection on both my words
and your own experiences.

I spent time in prayer for each of you my friends.
As I read your stories, your thoughts, your experiences.
At times I was brought to laughter, at times to deep thought,
other times to tears.
Some of you I have known for only a very short time.
Some of you I have known for almost sixty years.
One of you I have known before we were even born.
Some of you are family, some of you are closer then family.
With all of you I share a sense of humanity.
With some of you I share a common illness, with some I share a common faith.

The EIGHTH day is a day of reflection.
It is a time for you to read, to ponder, to laugh, to cry
and to write your own thoughts
fully knowing that night and day are often blurred.
Today I simply ask God to hold you close
that you will know a sense of security, hope and love.
May God bless your new day.

copyright © Carl DeLine. All rights reserved.

It’s Monday…today is a day of praise!

It is Monday. It is a special time for giving praise.

It is a time to know that even when things seem upside down progress can still be made.

It is a time to understand the technology that is so often relied on may not work THE BEST. It may be more beneficial to go back to an “old fashioned way” to discover a sense of focus and direction.

Today is Monday. It is a day of praise.

It is a day to remember there is a Source of Life way beyond ourselves. IT includes us. IT can not be explained. To try to do so would be to lessen IT’S power. IT is something to be experienced. IT is to be shared.  In your moment of savoring this reality please take a hug and pass IT on.



P.S. Thank you to my friends on Facebook who so readily share their photos and thoughts.

Sarcoidosis on Facebook.

Mary Ann, let me introduce you to sarcoidosis on Facebook.

As you have already experienced, life is becoming a series of decisions about making choices. You will be crossing many bridges while choosing not to cross others.

My most recent  post on addictions will introduce you to how I started on Facebook. One of the first contacts for me on Facebook was a Sarcoidosis Group.  I met some really great people here and we had some very supportive conversations. Then as I read other people’s post I also learned more about myself.

Sarcoidosis Reach for a Cure was the second group I tied into. Again very supportive people.  These folks were on a strong membership drive. One of the key things I have learned from them is the necessity to tell the story over and over again.

Sarcoidosis Real has just been a fun place to drop in on and say hello. Again some very supportive people. What has been a consistent thread here is the – hi – how are you mindset. Good feelings!

The Foundation for Sarcoidosis Research   is a good place to join as well. They are connected to researchers and people with support groups. Check things our before you get locked in. Here is a link to their web site. Foundation for Sarcoidosis Research.

As you begin to live with your sarcoidosis please remember you will not be alone. At times it will feel like that. Take the time to read other people’s stories then write your own. Share this with your family, they will not be able to read your mind, especially if you are trying to keep a “stiff upper lip”.

Take care and God Bless. Please take a hug and pass one on.