Reality Is Reality:
A Look at the Reality of Living with Sarcoidosis and DI
By Gilbert Barr, Jr.

Gilbert Barr, Jr., wrote Me & Sarcoidosis: A Lifetime Partnership after his diagnosis with sarcoidosis. Here is an interview with him about his book and experiences.

1. How long have you had to live with serious health problems?
I was diagnosed with sarcoidosis in April 1991, however I started experiencing health problems around 1986. At that time I was 28 years old and had never had any prior health problems in my life. In fact I was very active and athletic, primarily playing basketball, so this was something I wasn't familiar with at all.

2. How many different serious health conditions are you dealing with?
I'll try not to make this answer too long...Because of the organs affected by the sarcoidosis, which are my lungs, liver, lymph nodes and especially my pituitary gland; I have a multitude of permanent secondary conditions such as an insufficient endocrine system, an abnormal immune system, chronic fatigue, hypertension, hypothyroidism, insufficient testosterone levels, sleep apnea, severe acid reflux, severe muscle cramps, diabetes mellitus and of course DI, along with other minor conditions that are just now a part of my daily life.

3. Often, being diagnosed with a serious health condition can be traumatic. How did you feel when you were diagnosed with sarcoidosis?
Actually I had mixed emotions. First you have to understand that I had spent years being misdiagnosed and was told I only had 2 to 3 weeks to live. So initially I was relieved that finally my diagnoses explained why I was feeling the way I was and hopefully I could get back to a normal life. Then reality kicked in followed by the questions I think we all ask ourselves in this situation, "Why me?" then "How am I going to deal with my new health situation?" It was never a question of "If I was going to be able to live a happy, productive life" but instead "How was I going to accomplish it?"

4. How long did it take you to adjust emotionally and mentally to the diagnosis? Do you ever get used to the fact that you now have serious health conditions you must live with for the rest of your life?
I'll answer your second question first...NO! As far as adjusting emotionally and mentally, I'm still adjusting each and every day. I'm a strong believer in understanding your reality then facing it head on. I also have a strong Faith and a very supportive caretaker in my wife, along with others in my life. But still the emotional and mental aspect of living with a chronic health condition is the hardest thing to master. I understand my health problems, why I feel the way I do and why I can or can't do certain things in my life. I'll never be the same as I was in my pre-sarcoidosis life. However even understanding these facts, there are certain days when the mental aspect gets the best of me. That's when the reality of survival kicks in and I dig deep within myself and use whatever resources I have available to me to make it through the day because tomorrow is never promised to us. It's a constant battle, but what other choice do you have? Once you lose the mental battle you've lost the war.

5. What do you tell yourself each morning as you wake up to deal with the various symptoms of these health conditions?
First I say my morning prayer then look at my wife and tell her "I love her" before I take my morning medications. That's it! Then I start my day and deal with whatever health symptoms are present on that particular day, which will determine what activities I'm able to do. With everything I've been through, I appreciate that I made it another day so just the fact I woke up is enough motivation to push me. Even on those "bad" days I try to stay positive, which is another reason why I'm still adjusting mentally to my conditions. No matter how strong you are you never get used to not being able to do the things that were normal to you because of a health condition. It's a daily battle.

6. How have these conditions changed your approach to life?
It's only natural as you grow older your philosophy about life changes. Growing up I had a rebel attitude of sorts and didn't give any thought to life except to live it for the moment. Then when I was 28 I lost someone very close to me to sudden death and that had a major impact on my outlook on life. I began to appreciate life in general and understood how quickly your life could change. This was also about the time I started experiencing my first symptoms, so even with my new appreciation toward life, it was hard to appreciate my life. Once I was diagnosed with a lifelong chronic health condition along with the fact that I found my soul mate in my wife and now had the responsibility of raising a 7-year-old stepdaughter, which in turn gave me a stronger appreciation of my parents and the things they had done for me during my life, I began to appreciate each and every day of life itself and still do. Having a family is the most important thing in life and without your health having that family is not possible. It has taken me a long time to truly understand this fact and start putting my health first so that I can then take care of my family. So from a philosophy standpoint I've turned the negative of having a life-altering health condition into a positive outlook on life itself. I can't describe the impact of appreciation you get when you can't do something you love anymore due to a health problem. It gives you a real sense of what is important in life.

7. How has having these health problems changed (or not) your expectations for your life?
As I stated previously, it has given me a real honest appreciation of the little things in life. I expect nothing and appreciate everything!

8. Why did you decide to write a book? Writing a book, especially one that runs more than 300 pages, is a lengthy and serious undertaking, and a task that even professional writers find daunting. How did you find the confidence to know you could do it?
I've always wanted to write a reality-based book that would pull emotion and have an impact on others. What better subject than dealing with a chronic health condition that affects everything in your life and is an emotional roller coaster? I strongly felt my story would inspire others and have a positive impact on people's lives, as they could relate to my experiences. I'm an average person just like the majority of my readers and I felt they needed a book available to them they could identify with. So after getting over several personal hurdles and starting a disability leave, I just sat down and started writing. It wasn't until I completed the book that I realized how long it actually was. Then the work started as I made my writing into a book, which was the hard part because I've done everything myself. As far as having the confidence, I have confidence in myself and I know my story will have a positive impact on those who give it a chance! So confidence was never an issue.

9. Who did you write the book for?
I wrote the book for 3 groups of people. First were the many patients who live with chronic health conditions, especially sarcoidosis. I wanted to give them a story from an average person's perspective that they could relate back to their lives and let them know they can make it. When you have a mysterious disease such as sarcoidosis or DI, you think you are alone and a lot of times even your medical professionals don't have a clue. I just wanted them to read my story and relate. Secondly I wanted to give the caretakers their due. Being a caretaker for a chronically ill patient, especially for someone you love is one of the hardest responsibilities in the world and I felt they didn't get their proper respect. I'm fortunate to have a wonderful caretaker in my wife who has made such a positive difference in my life but a lot of other people don't. So I wanted to write about the impact she has made on my life and hopefully let others realize that the patient/caretaker relationship is just that...a relationship that takes effort and sacrifice on both parts to be successful. Last I wanted to let others such as the medical profession understand the impact of their actions or non-actions on their patients. I wanted politicians to understand the impact their support of health care issues have on the people who elected them into office. The corporate world and the impact their policies and benefits they provide have on their employees. Then there are the everyday people who might know someone with a chronic health condition or just deal with the general public. I wanted them to walk away with the understanding that you never know what a person who you come in contact with has going on in their life so please treat everyone as you want to be treated yourself.

10. If your readers glean just one lesson from your book, what would you want it to be?
No matter how bad things might seem, never give up. Understand your reality then do what you must to live a fulfilling life.

11. One of the unstated themes that run through your book is choices. You carefully choose your primary care physician, you choose to pursue a serious relationship despite questions about your health status, you choose to take control of your conditions, you choose to advocate strongly for yourself, and now others. Where did you find the strength to make some of these rather difficult choices?
That one is easy...my faith in God! I'm a very organized person who likes to understand my options and look at the reality of my situation. Then I think about my options and follow my inner feelings or gut reaction, which in my opinion is really God leading me. I don't mean to make it sound so easy because a lot of times I'm scared and know a wrong decision could have a major impact on my life but really it is that easy when you have Faith. I also have no problem admitting mistakes and correcting them before it's too late. Another motto I live by is "Don't worry about the things I can't control and change the things I can." So even though once I make a choice I move on, if it isn't working out I have no problem making a change, especially when my health or family are involved.

12. With even one of the various conditions you have to deal with, another person might have adopted a "no can do" attitude, yet throughout your book, you stress a very different approach. Why is maintaining a positive, "can do" philosophy so important for people with serious health conditions (or for that matter, people without serious health conditions)?
Your mental outlook on your life is the most powerful factor in the success and happiness you will acquire, regardless of your health situation. It's normal to get down or depressed at times because after all we are human, but you can't dwell on those negative feelings. I personally can't change the fact I have sarcoidosis regardless if I have a negative or positive attitude, so why not be positive and make the best of my situation? I just can't stress enough the influence staying positive will have on your life, whatever your situation might be.

13. You state again and again throughout your book that "reality is reality" but your attitude toward the events and people can very much affect that reality. How do you think your approach to life and what has been thrown at you shaped your reality?
First let me explain what I mean by that saying. I believe it is important to understand what you can and can't do in all aspects of your life whether it is your health situation, your current and future financial means, your strengths and weaknesses or any other aspects in your life. This is not to be misconstrued as being negative or putting yourself down but instead if you truly understand your strengths, weaknesses and options then you can successfully deal with anything. Use your strengths to overcome your weaknesses and don't waste time or energy trying to do something you know you are unable to do. During my life I've lived a very diverse lifestyle and done things that most people told me I couldn't do but I succeeded anyway because I understood the reality of what it was I was trying to do and stayed dedicated to my principles. Whenever people told me I couldn't do something, that just made me find a way to do it successfully. Even though I have a health condition that could make me extremely depressed if I let it, it's the hand I've been dealt so I must understand and accept the reality of my current situation. By doing that I'm able to keep an open mind and find the things that make me happy and productive then concentrate on those activities. I understand the reality that I have sarcoidosis and all of the other chronic health conditions and by accepting my reality I can honestly say I'm able live a happy life. For me being diagnosed with sarcoidosis was not the end of my life but instead the beginning of a new lifestyle.

14. Has being a published author changed your life at all?
The one change I've experienced is the opportunity to go out and speak at sarcoidosis events, which along with emails I receive from readers, gives me the chance to have communications with other sarcoidosis patients or others with chronic health conditions on a one on one basis and most importantly have a positive impact, regardless of how small, on others lives.

15. After reading your book, I feel I know you. Yet I'm still a stranger to you. What does it feel like to have so many strangers knowing fairly intimate details about your life and health?
Being a private person I can only describe the feeling as weird. But I was prepared for it so it doesn't bother me in the least. Actually that was the last hurdle I had to clear before I started writing my book. My story is the true story of my journey with sarcoidosis and everything associated with having a chronic health condition. If I didn't tell all of the details then I might as well have written a novel because without all of the facts then the story would not be complete since all of my conditions interact with each other. Plus I wanted others to understand that they should not be embarrassed or feel less of a person because of symptoms they might think they are the only ones who experience them. Understand it is a medical problem, be honest then get help so you can get back to living a fulfilling life. Although people all over the world now know a lot of personal things I deal with I also know without a doubt that more than a few have read my story then said, "I thought I was the only one who experienced that." Another positive are the emails and conversations I've had with people who after reading my story and are experiencing some of my same symptoms are now getting tested for conditions such as sarcoidosis and DI, which by the way is the most asked about condition I have when I speak at sarcoidosis events.

16. In many ways, writing your book seems to have positioned you to become an advocate for people with sarcoidosis, DI, or other health problems. What changes would you like to see in the way government, society, insurance, etc., treat people with serious medical problems?
I'll try not to stay on my soapbox for too long but here goes...I feel we first need legislation to give an accurate legal definition of sarcoidosis so that the insurance industry can stop denying disability claims and other benefits based on their own definitions. I was once denied a disability claim simply because the insurance company used a definition of sarcoidosis that stated I should only be fatigued, therefore able to work. As a Board Member for the National Sarcoidosis Society based in Chicago, we, along with other organizations, unsuccessfully attempted to get a national sarcoidosis awareness day last September, which would have for one provided funds for additional research. We did however get a local state sarcoidosis awareness day in Michigan, even though no media outlets even showed up for the event. Awareness and more importantly understanding is needed in all areas of our society. Sarcoidosis can attack anyone and any organ at anytime but yet we have no known origin, no standard tests ran to detect it, no legal legislation and no cure. Since people are actually dying from the affects of this disease, I don't know what it's going to take to bring positive changes. Here's another example of needed change regarding corporate America, legislation and the insurance industry. Last year when I went to get my DDAVP filled in January I learned the price was not my monthly $15 co pay but instead it was about $90. My new policy required I use a generic, although in my case the generic doesn't work but for a few hours. My endocrinologist wrote a letter to the insurance company explaining the situation but they said I needed to appeal to my corporation who provides the requirements or to the state insurance commission. Seems that in my new policy there was a calculation that determined if I didn't use a generic I would have to pay the difference of the higher price plus the generic co pay even though the generic didn't work. Neither I nor anybody else I asked could find documentation regarding the calculation anywhere in the material we had received, including my corporate benefit group or at least that is what they told me after about a month of research. Come to find out in Michigan the insurance company doesn't have to send you the details of your policy for 120 days after the policy starts. Now something is wrong with that law! I can't think of anything else you would buy not knowing what you are getting until 120 days after you bought it then you can't exchange it. Now as fate would have it I left the corporation on April 3rd with the issue still unresolved nor had I received my documentation from the insurance company. I immediately went on my wife's health care policy where I could again use the DAW brand of DDAVP at my $15 co pay. Although it was the same insurance company for both corporations, it was what the corporations themselves offered that made the difference. Always keep in mind it is your corporation who actually determines your health care. Now as you can see there are a lot of changes to several industries to correct that issue and others like it so that the patients are not the ones who always feel the negative impacts. For now all I can do is do everything I can to continue to bring awareness to sarcoidosis, DI and the affects the diseases and policies have on patients and their families. There's so much politics involved that it makes me angry when I think of the people suffering by being misdiagnosed due to a lack of understanding, denied insurance coverage, medical procedures, disability claims, medication, employment opportunities and so much more on a daily basis. People with medical problems need to be treated with respect and understanding because just because you have a medical problem by no means does it mean you can't be a productive member of society. So for me I'll continue to fight to bring awareness to my story and the experiences I've been through so others will hopefully not have to endure the same.

17.Why is it important for people to learn to advocate for themselves? What is the best way to advocate for yourself?
If you're not going to advocate for yourself, then who is going to advocate for you? Please do whatever you can to ensure you have a say in your own destiny. One thing you can do is pay close attention to what your elected officials actually do in regards to health care, not what they say they are going to do but look at how they actually vote or if they even voted. Pay close attention to the line items of bills they passed because most bills passed into law have many line items that have absolutely nothing to do with the premise of the passed bill. Then on Election Day go vote! If you don't think your vote makes a difference, remember the 2000 presidential election. United we can make a difference in bringing awareness and changes to how patients with sarcoidosis, DI and other health conditions are treated. But in order to be united each individual must get involved. Please do not wait for the next person because they might be waiting for you. It takes effort on your part to advocate your cause but I think your health condition and quality of life is worth the effort. I can't stress enough that you have to take control of your own destiny and do something about it. Anything you can do regardless of how small, will make a difference but by doing nothing you put your future in others hands. Keep an open mind and try to gather as much information as you can instead of just believing the sound bites the media gives you in order to make up your mind on what is really best for you. Knowledge and understanding are powerful tools. Acquire both then don't let anything discourage you in regards to being your own advocate.

You can learn more about Gilbert Barr's story and his book Me & Sarcoidosis - A Lifetime Partnership (2002, Writer's Club Press, New York, NY) by visiting his web site at www.gilbertbarrjr.com.