Carl DeLine

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 sarcoidosis. The interviewer is Carl DeLine, administrator of the Sarcoidosis Facebook group and the interviewee is Jaz O.

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 online. 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! 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!). When I was working every day on a nine-to-five 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 online have a deep respect and appreciation for you. How has your sarcoid 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! Although 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! It has also taught me that there are good people in the world and that silver linings exists around every cloud. Although 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!

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

Jaz: Boy, where do I start? Lack of financial support and/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 let’s 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 one 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 have 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. 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! Let’s 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!