Sarcoidosis

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In 1978 it was discovered that I had sarcoidosis. Sarcoidosis is a disease that has unknown origins. It seems to present itself in multiple forms. The following entries are discussion that has been placed on Facebook. In the last two years I’ve talked with a number of people. Some of these people have responded by writing longer entries. For the sake of my own history I now publish these conversations on my website. In the future I will create a blog entry, identified as relating to sarcoidosis and then post on Facebook.

Interest in sarcoidosis is growing. My concern is no longer about the disease as much as it is how to live with the disease. It would be wonderful if sarcoidosis could be eradicated. I have lived with it for over 30 years. It seems to attack without any warning. I will be adding my own thoughts as time goes by. If you are struggling with sarcoidosis or any other disease that flirts with life itself I encourage you to contact me and I will share with you some of the tools I have used. May God’s blessing go with you, Amen.

[This discussion was originally posted on Facebook’s Living with Sarcoid discussion board.]

Carl DeLine: Many years ago when I was first diagnosed with sarcoid the doctor’s did not know what was going on. It was then misdiagnosed. The disease did terrible things throughout my body. The doctor’s then asked that since I was dying could they experiment with medications. At the time it was thought that I would probably not live more than two weeks. Two weeks led to another two weeks, then two months, then two years etc. I live now with both the negative aspects of this disease and the positive aspects of it not killing me. It is easy to understand the negative but here is the positive. I took that concept of two weeks and began to plan as if that is all I had left. I asked what could be done in two weeks? Over the years my work has been in the community. I encouraged people to look at two week intervals and create a plan for the next two weeks. The issue was not to recreate the world in two weeks, it was only to leave it a little better for the next person. What came after sarcoidosis has been a tremendous gift to me. It has given me the freedom to add meaning to both my own life and to other people lives as well. Please know that you are not alone. Also know that sarcoid is now fairly controllable. More and more is getting known about it each day. While it is nothing to play with. Please do not allow it to take the play out of your life. check out coached by grace on facebook.

Janet Forsythe: I came over here, (to this sight) and thought, What can I say? Ive been through so many things with this deasese. There where times I thought, Im just loosing my mind. or the Doctors are going to think Im a Hypocondriac. Some of the things that have happened to me sounds crazy. Like I had these little bone fragments coming out of my hands and wrists. They did a byop. They in turn told me I was allergic to myself,or maybe the sun. Maybe my ammune system was confussed and was attacking my own body.That was before I was diagnosed.How was I supposed to feel? I found this sight and try to respond to people because I realize they need to feel like someone understands. It has helped me to understand it more myself, to realize I AM NOT ALONE. Im still very confussed about my symptoms. There is always something new coming up. I have my days where I feel I cant do this anymore. Then I think of all of you, going through the same thing and I have a wonderful family. Thank you Carl, I have also decided to live my life differantly. I was also told at one point that ,they thought I had Cancer. If it was, they gave me two weeks.Ive lost alot of people in my life to tragedy. WE Should always live each day as if it where our LAST!! Thanks to all of you for helping me.

Carl DeLine: To say I understand is not to minimize anything. I can only identify with the struggle. Please, take a big hug and pass it on.

Carl DeLine: There are days when I am just tired. I slept all night only to wake up tired. I am told that that happens to a lot of people and it is a part of sarcoid. Take care, take a hug and pass it on.

Janet Forsythe: That is true. I can not explain the weakness and tiredness. Then turn around and have insomnia and restlessness. I know people that have sarcoidosis, know what Im talking about, because Ive seen them try to explain it here. Thank you Carl, for being here.

Carl DeLine: Since joining this forum I have been pondering how my thoughts and words could be useful. On more than one occasion the medical “industry” has given up on me. It seems that there are a lot of consistencies in what people are saying. It also seems that people’s life situations move in parallel directions once Sarcoid is diagnosed. Because of this I thought I would just reflect on a few days with Sarcoid. if this would help others then that would be good. If not, then it will have at least given me a forum to let myself know that I didn’t make all of this up and for 30 some years I have not been fooling myself.

I woke up this morning humming a tune. Oh what a beautiful morning, oh what a beautiful day…..funny, here in Minnesota it is raining, the snow has melted down to show all the dirty stuff buried by the last snows, the sky is overcast, gray is the color of the day….but I do not have pain right now. I sat at the breakfast table laughing at the incongruity of the song. It then dawned on me that I have lived with pain for so long that it has been internalized in my psyche. When there is a reprieve the rest of me grabs onto the moment and celebrates life. It almost seems like a cat and mouse game with both the cat and mouse trading roles, one moment the one is good, the next moment the other. One moment life seems to be on the search for food and sustenance while in the next moment life is saying you will never get me. I will survive.

I do not know if this thought is helpful. Pain has been a reality for a long time. Now that I am older I know that pain is not always caused by Sarcoid. But Sarcoid has not been a sickness unto death, therefore I have learned to live with it.

Please take a hug and pass it on.
p.s. find someone having a heat flash, hug them, borrow their heat and thank them for being alive…simply put…thanks I needed that!

Carl DeLine: It is another day. Yesterday I talked with a friend who said he had sarcoid. He said he was having trouble sleeping. He said he was awake every morning at 2:30 or so. I told him that I understood. Sure enough, I woke up at 2:30, checked out face book and there he was. I laughed and went back to bed. I woke up tired and started to work. Today I feel fine, just a little tired. My brain is going a mile a minute. Two years ago we decided that I would be on prednisone for the rest of my life. When I went off it sarcoid activity flared up in my lungs again. I started taking 100 mg daily and worked my way down. Once it got down to 10 mg a day we switched to 10 mg every other day. This week we decided to switch to taking 10 mg every third day. I think much more clearly without the prednisone. This week my brain activity makes me think I am playing shortstop for the Twins. I am going multiple directions at the same time. I think I am more tired just because my brain is working in ways that it hasn’t for a long time. Have a nice day, take a big hug and pass one on.

Janet Forsythe: Funny, how some people might think you have lost your marbles. I again, think wow,someone does understand what this is like. How I would like to find the words to make this all clear. Thank you for understanding!!

Carl DeLine: When Sarcoidosis first hit me a few things happened. One of those things was the swelling of my eyes to the point that the retinas tore off. The emergency room in the hospital I went to was so backed up that it took almost three days for me to be seen. The pain was terrible. Once the swelling began to recede my retinas grew back on, but crooked. Perhaps this is one of the things that has been the hardest. Normal gets redefined. This new normal conditions the eb and flow of life. Once the body is damaged the body does start a process of healing but like trees on a mountain top they may behave a bit differently. They may look a bit different but they are non the less still trees. There came a point where I accepted that I still had life and the issue was to make out of life what could be made. In phrasing this I am careful to acknowledge that it is not what I made because I quickly became dependent on the team of people around me. Today over 30 years later I reflect how that process introduced/created a very beneficial pattern for me. In a conversation this week with someone else about sarcoid I could not help but reflect on the role family and friends play in living with sarcoid. I have a constant reminder of this as the retinas grew in crooked and there are small folds that create a blur in my vision. Today I am grateful that while there is a blur I can still see. Have a nice day, take a big hug and pass one on.

Jack Walker: Carl, I appreciate your hope! It is a breath of fresh air to find someone else encouraging others to stay positive. I heard 11 hugs a day chemically changes your body so I will take one and pass it on. Thanks.

Carl DeLine: thank you! Enjoy.

Carl DeLine: The weekend is over. I spent time with my son learning Word Press. We are getting ready to do a major push on the work that I do. Something strange happened in that I noticed that my memory was better. Often it seems like I have to read things over and over again. Then it dawned on me…my prednisone level is down to 10 mg every three days.

I have a standard line when I do public speaking. If I stop and stare off into the distance without responding, don’t get alarmed it is only the prednisone. I have sarcoidosis and it flares up every now and then. I take the prednisone and depending how much I am on you could tell me your name and seconds later I would not remember it. If I wander off topic it is probably the diabetes. I will need your help, so just raise a hand and I will go back to my notes. If I say anything of magnificent wisdom, my wife asks me to remind people that we have been married for 36 years and it probably took that long for her influence on me to start showing through.

I have found that it is important to not take myself too seriously. It is also important to create perimeters and recognize when I am close to the edge. It does not mean that I am cannot go there, it means that my brain must understand that it is an intentional decision. The older I get the more I realize the truth of this last thought.

Have a nice day, take a hug and pass one on.

Carl DeLine: I woke up this morning with pain, not excruciating but just pain. My hands are tight, so it is back to the two finger approach for keyboarding. The pain fills my body, every joint. I have had two back surgeries and the spine tingles to move. They say I also have Costochondritis which is chest pain, inflammation of the cartilage. Today is one of those days when I take the pain medication. I am careful to discipline myself and monitor intake of everything as best as possible. My head hurts, my eyes bother me and I know that as it intensifies I will end up taking a hot shower. It will minimise the pain for a few minutes but it will be back. If it stays to long I go in for a chest x-ray. If there is activity in my lungs we will no doubt jump to 100 mg of prednisone and start over. My belief is that it will last a day or two and then I will feel better again. During times like this I give myself permission to do menial tasks until I can think more clearly.

Have a nice day, take a hug and pass one on.

Janet Forsythe: Carl, sounds like you are writing about me and my days with this ugly thing that controls me. I take long hot baths. Today is one of my bad days as well, and yes, it takes forever to punch out the words that come slowly to my fogged up mind. No, it is not because Im on meds. that cause this!! The pain is extreme. Sometimes I get up and walk the floors. I cant get alot done when the pain is too much. I had a hard time buttoning my blouse this morning, but Im going to get SOMETHING done today! It just has to be slow. I pray for anyone going through this! Its not fair, I just wish more people understood what is happening! God Bless.

Carl DeLine: Often pain comes and goes. Today I am fine again. I hope these entries have been helpful. My desire was to take a few days and reflect. Sarcoidosis is a hassel. It can get bad then good then bad again. It can affect a lot your organs. People have died from sarcoidosis and people have lived through it. Please read the posts, share the good and the bad and may God bess. Take a big hug and pass it on.

Clementine Bentley: Carl they have been very helpful, I just finished reading your entries. The one that I identify with is that (I’m paraphrasing you) that “Normal is redefined and like a tree that has been damaged, it heals itself a bit differently but continues to grow.” (Sorry my paraphrasing could be better). How beautifully put.

Kindest regards on this journey,

Clementine

Carl DeLine: Clementine you asked about the organs:
1. it started with an elevated fever
2. http://en.wikipedia.org/wiki/Erythema_nodosum, large nodules on the legs’
3. my eyes began to swell and the retinas detached on both eyes

http://noairtogo.tripod.com/sarcoid.htm#Personal

4. I then went into the hospital, the next thirty days were a blur. I was told that my kidneys, liver, heart, had all been attacked. finally my lungs began to malfunction. at that time it was described as a tornado going through my body. the disease was un predictable.
5. It had gone on undiagnosed. Finally the word sarcoidosis was introduced.
6. the only treatment suggested was prednisone in large dosages. If I remember correctly I was given 80 mg twice a day.
7. then the sarcoid began to slow down.
8. after that I became a guinea pig for experimentation. It was pretty well decided that the damage had gone to far and I was dying.
9. That was over 30 years ago.
10. since then I have been hospitalized a number of times with either sarcoid or some other immune deficient symptoms.
11. all in all I feel stronger today then I have in years.
12. I meet regularly with a specialist, have my lung capacity checked, meet twice a year with an eye specialist-we laugh together as both eyes are scarred terribly, yet with my glasses I have 20/20 vision.
13. but.. I never had chemo.
14 have a nice day, take a big hug and pass it on.

Angela Pratt: So good to find this,I am in New Zealand. I was diagnosed with Sarcoid due to large lymh nodes in my chest in 2007, masses of pain in my left side was on Mophine & Codine for months, they did a biopsy on the lymph nodes and found sarcoid. That was in March 2007, I started having paralysis incidents in February. i would be paralysed for up to 20 mins at a time on my left side, this happen 7 times until finally after telling my drs about them they gave me a MRI and found that i had been having strokes (really). After that MRI I had a cerebal angiogram and was told that I have premanent brain damage on the right front of my brain. mainly memories are missing which can be hard some times, I don’t remeber seeing people or doing things from a few years previous and zlso some long term memory. I was 35 at the time. I’m now on Aspirin 100 mg a day and also take fish oil capsules. but I still have the brain fog I liken it to baby brain. i got pregnant in September 2007 and the Sarcoid went into remission, but now it’s back I have word salad days when none of the right words come out of my mouth, but no more strokes, so aspirin is thinning blood enough.

I won’t take perdnisone as I had to much when I was younger as treatment for my severe atopic ezcema and it had too many side affects.

Carl DeLine: OUCH! please remember that the brain can re-route thought process. Permanently damaged areas are often side stepped in such a way that new patterns are introduced for older tasks. It takes time but it does happen. The human body is a wonderful creation, it survives daily onslaughts by so many different forces. It rebuilds itself molecularly and cellularly. The next step is to rebuild the emotional part of our lives. The emotional side often seems so very difficult. For myself I began yo realize that emotions could be rebuilt by creating an intentional understanding of how many times I had been in this/that situation before. One of the gifts of age is the freedom to understand that many of these experiences do repeat themselves. Reader’s Digest once put this thought at the bottom of one of their pages. “The pessimist sees the tunnel, the optimist sees the light at the end of the tunnel, but the realist sees the tunnel, the light at the end of the tunnel, and…the next tunnel. Retraining ones brain is much like that. Each tiny victory, no matter how small, can be followed by another victory. I wish you well, May God bless, and please take a hug and pass it on.

Clementine Bentley: Hi Angela, First let me commend you on your courage, and thankyou Carl for explaining your sarcoid process. Mine is more similar to yours, except that it hasn’t gone to my heart or brain. Angela, Carl has been very inspirational, for me with this disease. Don’t get me wrong I do have days when I get so frustrated with my body not working right, but I’ve learned to appreciate the good days I have.

Good luck to you my friend,
Clementine

Chris Mauerhan: Hey Chris here from Brisbane, I was diagnosed with Sarcoisosis in 1999 after finding a rather large mass between my lungs, I had a horrible 5 years with the disease and it cleared up and I now live a very normal life. Im 35 years old and life is good. I wish you all the best with your journey, for some it will be easier than others , I couldn’t have done it without the support and guidance of friends and family.

Carl DeLine: I was told when I was diagnosed that approximately 1 in a million people are touched by sarcoid. 1 in a million of those people get it bad enough to need treatment. One of the positive thoughts has been to know that makes each of us stand out people. We are all truly unique..in fact you are 1 in a billion. CONGRATULATIONS!

Carl DeLine: Yesterday was a write off and today I am tired. As I look back over the years things get accomplished not because of 100 yard dashes but because of long walks where each step could be savored and the finish line was like being greeted by an old friend. Have a good day, take a hug and pass one on.

Carl DeLine: This was first written five years ago.

The doctor walked into the room. He was a short man, balding, darker skin and wearing a short white jacket. He seemed to be searching the floor for words that may bring hope to this moment. The silence captured the moment. “Doctor,” I said, “how much time do I have left?” “At the rate you are going you have less than two weeks.” Again silence controlled the moment. “Thank you, I can live with that.” A gentle peace came over me. By the time I realized what had just happened an hour had gone by. The doctor was gone. I was alone with my thoughts.
I had been in that Doctor’s position many times. As both a hospital orderly and as a chaplain I knew the moment only all to well. This time however it wasn’t about someone else. It was about me. That was over thirty years ago.

I had originally included this on a web site because so many times people had asked about saracoidosis. They had a friend or family member that had just been told they have it. I believe you will find support from people on this site. Please take care, be gentle with yourself, take and big hug and pass one on.

Carl DeLine: I have been wanting to mention this for sometime and just keep forgetting. When I was first in the hospital Sarcoid had really done a number on me. I was very weak and as I have said in other posts the Doctor’s did not believe I was going to pull through. On one day a couple came by to see me. They said hello and I started to laugh. After about 4 hours of swapping stories about dying and the times we would have probably looked forward to it the nurse came in and scolded my friends for staying so long. I said it was Okay. She said it was not Okay. About two hours later the Doctor came by to visit. She came in the room and started to tell the Doctor that my friends were not going to leave and could he do something about it. He said Carl do you want your friends to leave. I said absolutely not. We were having a blast swapping stories. The nurse then said, Doctor he is too weak to be putting up with such a long visit. The Doctor said wait a minute, what is is diagnosis again. She blurted out he’s going to die! The Doctor then said, it seems to me that he has a choice, should he die laughing, or die alone in his pain. The discussion continued with even more laughter. I am not sure anything we said was funny. I am sure that after that moment I felt better and if I remember correctly my vitals began to improve. Can laughter be a part of the healing process. I strongly believe it can. With that in mind please take time to laugh. Enjoy want you can, and don’t forget- take a big hug and pass one on.

Carl DeLine: The good news is, I made yet another donation to the medical system. The bad news is the lymph node swelled up. I went to the doctor. The diagnosis at first is simple, it is some form of infection. But, because of the history of sarcoid, sarcoid now becomes a variable in the diagnosis. The donation gets larger.

This whole question on health care has to be looked at all over again. People with terminal illnesses and long term illnesses actually help to keep people in the medical industry employed. Pre existing illnesses tied to genetics or environmental situations do exist. To lump these categories together and then for the medical process to refuse treatment is obtuse. It reflects the need to be a blame oriented society. That is wrong. I have lived in both Canada and now again in the United States. Both health care systems are flawed. One system declares the need to push forward no matter what the cost, the other system says lets wait, see what kind of damage happens, if it is bearable the patient can either live with it or we will try to minimize the damages. Please take time to tell your own story and apply it to an effective resolution on this process. One side, then the other continually use chronic illnesses as illustrations of “see, I told you so.” The forest gets so full a person can’t see the trees. The arguments get so plentiful that systems buckle and illnesses like sarcoid are put on the back burner. I will stop now. Perhaps this is only letting off steam but recently I called a research facility, described my history and offered to give my body to research. The response was simple. We aren’t studying that any more.

Please have a nice day, take a hug and pass one on.

Carl DeLine: Today I have shortness of breath. I will do my best to walk as much as possible. I enjoy just listening to older music. It does not have to be classical, but classic sounds have significance. This rendition of an old prayer makes sense to be. It is Breathe on me Oh Breathe of God. http://www.youtube.com/watch?v=c3PHjA43iJE Have a nice day, take a hug and pass one on.

Carl DeLine: The night seems so short. The crackling sound in my lungs woke me up again. I wonder what it would be like to sleep all night. If I take a Tylenol PM sometimes that works but then the pain from laying in one position wakes me up. It is so important to keep moving. I have found that denial works sometimes. Sometimes I laugh and say, there – life has more to offer than you think! I gave up arguing with myself over the validity of selfish dreams. Who has rights for this or that. The only rights we have legitimately is to be there beyond our personal level of frustrations. It is in giving that we receive.
The time spent in meditation and prayer is very refreshing. It gives me permission to look beyond a specific reality to the hope beyond reality. Life comes back into focus and the sting of pain, the sting of unfulfilled moments lose their sense of loss. A new joy takes their place. A hug no longer means only I am here for you, it means I am here with you. lol. :-) It is time to go back and rest. Take a big hug, and pass one on.

Carl DeLine: Many years ago my wife and I declared thursday to be a day of saying thank you. The thought was to identify at least one thing, person, or situation that could be highlighted. We began to look forward to thursday as being a break from the routine of the week. When sarcoid hit me I found it hard to think this way. Then I began to identify what it felt like to experience the moments of relief. This freedom to be verbally thankful has been very helpful. By hanging on to thursday as a day of thanksgiving hope was nurtured in the healing process. I identified what was working for me. I identified what was strengthening for me. We still do this together. We have now been married for 37 years and can look back to see how that concept has helped us through so much. So if you can, find someone you can hug today and thank them for being there for you. Then ask for a hug back.

Janet Forsythe: Carl, I sugesst To go read “The Walk” New release by Richard Paul Evans. It is a great book . I just read it and it reminds me of your journey (And mine) Great read!!

Carl DeLine: thank you, I will check it out.

Carl DeLine: Allergy season hit Minnesota early this year. Pollen counts are up to 1700. Funny, in all these years pollen has not affected me much at all. This year, on top of the sarcoid, there were times when I could barely breathe. I am staying inside and even then it is bad.

Janet Forsythe: Allergies are awful! Every time I go to the Dr. I have to drive 100 miles north over the Mountain to Provo or Salt Lake City! We live in a small town. The ride to the City with all the pollution brings hard breathing. I try to stay inside alot. But…. you gotta live!

Carl DeLine: This morning it seems every joint hurts. Even my skin hurts. My eyes don’t hurt. So I thought I would read for a while. Have a nice day, take a hug and pass one on.

Carl DeLine: good morning people. Yes! We are human. There are times because of the sarcoidosis I have wondered if that was true. It seems that natural remedies for all other human beings work, but, mine don’t. However, today is Thursday. It is a day of Thanksgiving. A long time ago my wife and I declared Thursday to be a day of Thanksgiving. There are some people who say they don’t need crutches to survive. I gave up that mentality a long time ago.( just after I broke my ankle for the second time) I have learned that I need other people. I have learned that I need technology. I have learned that I need to trust what comes my way. Today is Thursday. I have wanted to post on this discussion as often as I could. It only seems fitting that I post today. I am thankful that most of the pain has subsided. I feel uncomfortable but I can work and I seem to be able to breathe without much problem. I hope you have a good day, please take a hug and pass one on.

Carl DeLine: PS Janet, The Walk just came in at the library. I started reading it last night. The first 50 pages went well, thank you.

Carl DeLine: Hello Todd,
reading your post brought back a lot of memories. I had to learn how to think all over again. There were days when the headaches were so bad I would just sit there in tears. The first thing I did in my recovery was to start using a spreadsheet for everything I did on the computer. I began to structure the letter’s, research, all the work I was doing on a spreadsheet. The structure of the spreadsheet began to force my mind to think in patterns. As time went by I did research papers, letters, sermons, everything on the spreadsheet. Eventually I started using goal setting techniques in small increments. The spreadsheet allowed me the ability to record information in a visible way. Ultimately I developed a tool that I have used with people over the years. Having sarcodosis is like being brain-damaged from drug overdose. The recovery includes a defogging process. I now give this information away free on my website, www.makingtodaycount.info Have a good day. I hope this is useful.

Carl DeLine: Janet, you were right, the book The Walk was delightful. It has been a very long time since I read a book in one sitting. Too bad the next book does not come out until 2011. Gentle story line and so true about the people met along the way.=

Carl DeLine: Today is rainy and cool. I am finding it hard to breathe. My chest hurts. I will no doubt slow down, but I know the secret is to keep moving and keep my mind busy. Do one thing at a time. Don’t forget to get help if you can’t smile or laugh.

Carl DeLine: The last couple days have been quiet, I have been using three pillows to prop myself up. That way my lungs have not rattled. My neck gets pretty stiff though (LOL). Take a hug and pass one on.

Carl DeLine: This morning the rattling woke me up. I have to breathe through my mouth. I am sure the breathing will either awaken my wife or keep her awake if she is already awake. Thousands of thoughts have crossed my mind while figuring out if I should get up. The fact that I am writing this should reveal that I did not stay in bed. I will have breakfast and then try to take a nap.Have a good day, take a hug and pass one on.

Carl DeLine: This last week has been difficult. The breathing has gotten better but now the diabetes has taken the next step. The lack of sleep has triggered a surge in sugar level, the prednisone has triggered the sugar level. The high sugar has made it hard to concentrate. The old question, what came first, the chicken or the egg? This is both relevant and irrelevant. Sarcoidosis came first. Prednisone came second. Diabetes came third. Sarcoidosis flared up. Prednisone was increased. Diabetes flared up. Lived with the whole thing, then sarcoid subsided, prednisone was decreased, diabetes backed off. Hopefully the cycle will take a rest. Have a good day, take a big hug and pass one on.

Carl DeLine: Woke up this morning after a full night of sleep. Very tired, can’t wait to take a 1/2 hour nap, that usually pulls me out of it. My arm muscles feel like they I just did a hundred pushups. (not that I have ever done that LOL) I will do my reading and work on my morning posts. Have a blessed Memorial Day. Take a big hug and pass one on.

Carl DeLine: Feeling good, hadn’t realized so much time had gone by. Take a big hug and pass one on.

Carl DeLine: The lungs have had a set back again. Last week the lung capacity was down to 50%. Tomorrow there will more tests. Hopefully things will have started to turn around again. I will soon turn 60. It is the first time in years that I actually said I think I will see at least another 20 years. Take care, take a big hug and pass it on.

Carl DeLine: Well here it is- 60. Imagine that! How many times have the doctor’s said …well… we just don’t know. Never thought I would see 40, then 50 and now 60. Sarcoid may have met it’s match. Now the doctor is saying that because of my health problems it forced me to watch out for other problems. While sarcoid is still a “miserable” force to deal with the teeth seem to be getting duller.

Carl DeLine: Just stopped by to say hello. I am on a breathing machine at night these days. It helps me to sleep but I am still tired when I wake up in the morning. I used to be able to nap but that has not been happening lately. I some times dose off and then wake with a start. I know there are worse diseases out there and that helps me to keep perspective. I also try to keep this in perspective of my understanding of my faith.

Carl DeLine: In response to a person who has just been diagnosed at the age of 50…
I am 60 years old and have lived with sarcoid since the late 70′s. There are times when I could not work, times when I wish I had not been working and other times when I knew if I quit working that would be the end of me. All of that to say that sarcoid will give you set backs. You will learn to live with them. I will be on prednisone for the rest of my life. I watch it daily and there are times when I actually convince myself that I will live for at least another 20 years. Not bad for having been told that I had two weeks to live….way back then. Have a good day, take a hug and pass it on and God bless.

Carl DeLine: This next post is a part of a letter I have sent to a new friend with sarcoid. Sometimes when sarcoid backs off I forget and I want to catch up on so many things in life I have missed. Then the illness itself reminds me that it is time to slow down. I hope these thoughts are meaningful.

Dear friend, please accept my apology for not responding earlier. I am very happy to hear from you. I am saddened by what is happening to you. A lot of the illness you describe could be sarcoid related. Kidney, asthma, diabetes, are words I hear over and over from people. Some things you say bewilder me. …. At this time do you have supportive people around you? Do you have medical help? My battle with sarcoid has been a long one. It has been over 30 years for me. I have found prayer, and talking with God to be both powerful and important in my life. These last two months have been very very busy for me as my work has been growing. I have found so much confusion in the world today. I hope for you the healing that is needed. Sarcoid often goes in cycles. Today it may be strong and then it changes. Tomorrow it could settle down. When I was first diagnosed I was given 2 weeks to live. I now look at life from a 2 week perspective. What can I do to help others or what do I need to do to put my life in order for the next 2 weeks. That has helped to keep anxiety and stress to a minimum. Sarcoid does not have to be a life sentence. For me it has become a life calling. Please take care. Hold tightly to your child. You are right, sometimes faith is not enough, so it is important to keep a small group of others around you who can have faith for you in a genuine supportive way. This is not a passive pious group. This is a group who talks and walks with you without pity, but recognizes your strength and loans you theirs in moments when you least expect it. I hope you can accept these thoughts as a hug. Thank you for contacting me. You have reminded me of my own calling at a time when life has gotten so much busier. I am indebted to you for this. Thank you.

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[This discussion was originally posted on Facebook’s Living with Sarcoid chapter 2 discussion board.]

Carl DeLine: This next post is a part of a letter I have sent to a new friend with sarcoid. Sometimes when sarcoid backs off I forget and I want to catch up on so many things in life I have missed. Then the illness itself reminds me that it is time to slow down. I hope these thoughts are meaningful.

Dear friend, please accept my apology for not responding earlier. I am very happy to hear from you. I am saddened by what is happening to you. A lot of the illness you describe could be sarcoid related. Kidney, asthma, diabetes, are words I hear over and over from people. Some things you say bewilder me. …. At this time do you have supportive people around you? Do you have medical help? My battle with sarcoid has been a long one. It has been over 30 years for me. I have found prayer, and talking with God to be both powerful and important in my life. These last two months have been very very busy for me as my work has been growing. I have found so much confusion in the world today. I hope for you the healing that is needed. Sarcoid often goes in cycles. Today it may be strong and then it changes. Tomorrow it could settle down. When I was first diagnosed I was given 2 weeks to live. I now look at life from a 2 week perspective. What can I do to help others or what do I need to do to put my life in order for the next 2 weeks. That has helped to keep anxiety and stress to a minimum. Sarcoid does not have to be a life sentence. For me it has become a life calling. Please take care. Hold tightly to your child. You are right, sometimes faith is not enough, so it is important to keep a small group of others around you who can have faith for you in a genuine supportive way. This is not a passive pious group. This is a group who talks and walks with you without pity, but recognizes your strength and loans you theirs in moments when you least expect it. I hope you can accept these thoughts as a hug. Thank you for contacting me. You have reminded me of my own calling at a time when life has gotten so much busier. I am indebted to you for this. Thank you.

Kevin Lowe: Dear Carl,
It is tremendous to hear you speaking so positively about what you have gone and still going through. I think sometimes to receive such a shaking in life does have the positive benefit that it allows you to see your life in a fresh and new way despite the fact that you are still suffering in a terrible way. I am utterly convinced that it was only by God’s hand that I was saved from a premature end caused by sarcoid, that must then mean that I was saved for a purpose and despite the problems sarcoid may throw at me I have a peace and confidence that were often very difficult to find in the busy life that I had before. I must say that sometimes I am daunted by some of the things I read on how sarcoid is effecting people and I wonder will I go through this next? However I now realise that you can’t anticipate or predict sarcoid so why worry about it? worrying will not help or improve the situation just heighten the anxiety. I think I foolishly believed the line that sarcoid tends to go into remission after 2-3 years now I suspect that this will be part of my life for a lot longer (so I’d better get used to it) . I thank God daily for each new opportunity to see and enjoy his amazing creation again, and for my family who are tremendous in thier love, support and kick up the rear when required. Thank you for your fresh and positive perspective – God Bless.

Carl DeLine: Hi Wendy,
Your question causes me to smile because I’m aware of both the very simple answer and a very traditional answer. Dissolving anxiety takes time. Your mind, and your stomach, go through multiple learning cycles. When you say God is in control and sarcoidosis keeps messing up your life it is hard to believe that God is in control. Over time, and after measuring multiple results patterns develop. It is in these patterns and the results of these patterns that a person learns how God is in control. Anxiety begins to diminish as each little light comes on. My initial statement about smiling is simply that I have been around a long time and have the gift of hindsight rather than the expectation of foresight. I have seen how God has used sarcoidosis to touch other people’s lives despite of me, and also through me. I honestly stopped taking one day at a time and switched to taking two weeks at a time. I did this because a doctor told me I had two weeks to live. I kept doing it because I discovered that I needed to live to a time frame that held me accountable to manageable/measurable tasks. As I saw the tasks completed or just “stopped” I also saw my anxiety level begin to drop. In addition, this gave me permission to clarify with my family and supportive friends that I do have an illness. It is a very serious illness. I have not discovered the magic wand to get rid of this illness. I have prayed and prayed and prayed and asked God to remove it but the illness has stayed with me. What I have discovered in addition to patience and controlling anxiety is that God is alive, God actually cares about other people, and God actually cares for other people through me. That conclusion causes me to understand that I have a purpose in life beyond my sarcoidosis.

Sherri Russo-Velte: Carl
Thos are very profound and powerful words. I’m sad that you also have to live with Sarcoid but am happy to read that you have a positive outlook. It is rare, I read so much about people feeling bad for themselves and it frustrates me because I have learned that attitude is 80% of the battle. Doctors, meds and holistic methods can only do so much. We can have control. Who we are defines us, not our illnesses. I have had Sarcoid of the Lungs since 1999, I was diagnosed in 2001. I’ve had Rheumatoid Arthritis since 1990, it’s in it’s severe stage. My sarcoid is always present, my left lung is mostly scar tissue and my right is not as bad but still affected. My lung function is at 30% – woohoo. I used to be very active and into health and fitness. My lifestyle has changed, I still mourne the body I had and I get angry at the body I have. But mostly I push on, I am too stubborn to let these weird things define who I am. I have modified the things I love to do and do them when I can. I have learned that it’s alright to lay on the couch or stay in bed if my body needs to and it’s ok to be angry sometimes. But I am blessed to be alive and to be able to do the things I do and have the family I have. That’s what I try to focus on. Have goals and work to achieve them. I was given less than a year to live when I was first diagnosed, that Dr. was a quack so I got rid of him. He told me to go home and get my affairs in order, stop working, don’t do this, don’t do that. It was a death sentence. But I refused to believe I was dying and did nothing he suggested. I went on prednisone and O2 at 36 years old and continued to do what I needed to do to live. I found amazing Dr’s who wanted me to keep active and supported me at every turn. I’ve had horrible times and great times. My sarcoid flares about once a year or so, the Dr’s don’t have a clue how to treat me but they work very hard and work with Dr’s around the country to come up with answers. And I get to control what I do and when I do it. Anxiety is a part of my life, but what you say is so true, we can lessen the anxiety. I have finally gotton off anti depressents and have been good for 4 months without them, but if I have to go back on high doses of prednisone I will take them again. I wish you and everyone you touch well. Your message is strong and should be heard. I have learned through friends with kidney failure, breast cancer, RA, disc disease that our attitudes determine a large part of how our disease affects our lives. Blessings.

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[This discussion was originally posted on Facebook’s Farruggia Rita Sarcoidosis discussion board.]

Farruggia Rita: HOLA A TODOS…SOY DE ARGENTINA, Y ME DIAGNOSTICARON SARCOIDOSIS DE MEDIASTINO Y OJOS HACE 3 AÑOS….TOME CORTISONA 3 AÑOS….Y HACE UN MES Y MEDIO QUE ME LA SUSPENDIERON, Y HACE DOS DIAS COMENCÈ CON FIEBRE DE NUEVO……POR FAVOR SI PUEDEN HABLENME DE LOS PRODUCTOS NATURALES, COMO SE LLAMAN PARA VER SI PUEDO UTILIZARLOS ACÀ EN ARGENTINA…GRACIAS..UN ABRAZO….

Guy Anderson: Hey I am not sure what you said there – but God bless you and take care of you and your Sarcoidosis

Carl DeLine: Farruggia Rita said – HELLO TO ALL … I AM FROM ARGENTINA, and I was diagnosed MEDIASTINAL SARCOIDOSIS OF 3 YEARS AGO AND EYES …. TAKE CORTISONE 3 YEARS AGO …. AND ONE MONTH AND A HALF TO ME, suspends, and two days ago I started MOUTH …… AGAIN IF YOU CAN PLEASE Tell me about NATURAL PRODUCTS AS CALLED TO SEE IF I CAN USE THEM HERE IN ARGENTINA … THANKS .. A HUG

Carl DeLine: PS that was taken from google translation.

Guy Anderson: Carl you Rock!

Carl DeLine: I’ll pass that on to my kids…thanks for putting it in writing :-)