The way we would combat this new health situation was with replacement medications such as prednisone, synthroid, and injections of depo-testosterone along with DDAVP nasal spray for the diabetes insipidus.  Since the cells were now dead we could only replace with medication what my body should have been producing on its own.  This would turn out to be a tricky thing to manage. For example, if I added any body weight I would need to adjust my medication, if I started to throw up my body couldn’t react and since I couldn’t hold medication down I would need to be rushed to the emergency room.  Although still a challenge, over time and with good medical care/advice, I’ve been able to do OK.

     Over approximately twelve years since my diagnosis I have developed several additional conditions such as hypertension, severe acid reflux, sleep apnea and diabetes mellitus (sugar diabetes).  There are also many daily side effects to both my conditions and medications.  They include daily cramps (primarily in my feet, legs and hands), mood swings and depression, along with various eye and dental problems.  There is a lack of energy to just do the basic things a human being enjoys doing, which can make the mental stress overwhelming at times.

     Living with my newfound chronic health condition has been a major adjustment and continues to be as each day passes.  One of the most important and yet sometimes overlooked aspects of successfully dealing with your chronic health condition is your caretaker.  The people around you can make the difference between comfort or discomfort, happy or sad and life or death.  We as patients must understand their importance to our lives and not take them for granted or feel that for some reason it is required for them to take care of us.  It is usually a greater mental stress on the caretaker due to the helpless feelings they experience, especially loved ones.  We must understand this and not put guilt trips on them...sometimes they need a break from us.

     To ensure we get what we need another important fact to remember is that we must be honest about how we feel.  This includes not only to our caretakers but also to our doctors.  Crying wolf or holding back information can be deadly!  Since no one can truly understand how we feel, how can they help us if we are not honest?  Being a doctor is hard enough without having to try and read our pain.  Honesty can only help everyone involved.  This honesty is even more important when it comes to us...the patient!  The most vital aspect of dealing with the mental aspect (in my opinion) is to understand your situation then deal with it honestly.  It can be very difficult at times to honestly look in the mirror, but necessary!

     Another important aspect of living with a chronic health condition in the twenty-first century is learning how to utilize and understand your insurance policies.  Regardless of what you do regarding the medical profession or what services you receive, you must deal with some type of insurance.  Insurance is required or you will either go in serious debt or maybe not even be given treatment.  Understanding your insurance coverage is critical and will take effort on your part (along with a lot of frustration).  Do what you have to do to understand your policy!  Whether it be read your policy several times, call the insurance company and ask as many questions as many times as needed to get a full understanding or ask anyone who you feel comfortable with to explain your policy to you; you must understand.  Question everything!  Sometimes you have to take it upon yourself.  It is your money and entitlements at stake, not the insurance companies!  This area is also another good example of the importance of a trusting caretaker.        

     Mental stress is another major factor when living with a chronic health condition, mainly because your health affects everything you do in your life.  It helps to have good caretakers, caring doctors and an understanding employer to support you but the real support you need comes from yourself.  You must be able to accept and be honest with yourself about your health condition, then deal with it.  After all you really only have two choices; deal with it or let it destroy you.  In my opinion, being mentally strong is the hardest aspect of living with a chronic health condition, but is the most important.  Once you lose the mental battle then you are in trouble!

     Living with a chronic health condition is a daily challenge but with mental toughness, good support factors, good doctors and Faith; it is manageable.  You might not be able to live your life as you did before you developed your condition, but you can live a very satisfying and productive life with any type of chronic health condition and specifically with sarcoidosis.

     Life is too precious and short to not attempt to enjoy every minute that you are alive.  So please live everyday as if it was your last and do what you must to stay as healthy as you can.  The choice for happiness is really up to you! 

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Gilbert Barr Jr is the author of the book “Me & Sarcoidosis – A Realistic Patient’s Story About Living With A Chronic Health Condition”