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.

WAYNE:  OK.

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
info@carldeline.com

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