If you have been with living with sarcoidosis for any amount of time, you know that this nasty disease will often kick you in the teeth and leave you frustrated just about every day. As a fellow sarcoidosis sufferer for about the last five years, I know that I wrestle with setbacks a lot, and I often get down on myself for not being able to handle them. However, I also know that we are warriors, and this disease has made us versatile, flexible, and adaptive…pretty much by necessity.

Recently, I suffered another setback – physical this time – and it really caused me to struggle with my limitations. But, out of this setback, came a valuable lesson that has really encouraged me and I hope it does for you too. After a quarterly checkup, my healthcare team decided I needed to wear a cardiac monitor for a few weeks, to see if my disease has spread to my heart (I have sarc in lungs, lymph, skin, eyes, & neural so far). When the monitoring device came in, I let it sit for a few days, not really wanting to do it. (Do you ever get tired of all the testing, treatments, & appointments like I do? As if sarc-fatigue wasn’t enough!). However, after a couple ‘bad’ pulmo-cardio episodes, my wife ‘encouraged’ me to begin the darn test.

So, early last Monday morning, I did all the prep and began the test. I logged in online and, over the next few days, reported a handful of times I felt something might be wrong. On the fourth day of my wearing the monitor, I was having a ‘good’ day and thought I would do some light gardening (my mental therapy). After only about 30-40 minutes, I became very lightheaded and decided I should be done for the day. On the way to my patio to sit in the shade, I got very winded and needed to stop and take a seat on the ground. Feeling I should report this on my cardiac monitor, I reached for my chest. When I tried to push the button to mark an ‘event,’ I felt the entire monitor slip and slide down under my t-shirt. Apparently, it was hotter out than I thought, causing sweat to loosen the adhesive on the monitor. My wife had to help me to a chair on the patio, and I became more frustrated and upset with every painful step I took. In just a few minutes, I went from doing something I enjoyed to needing help to even walk. Did I tell you how much I really, really dislike sarcoidosis?

As I rested, trying to catch my breath (can you relate, sarc-people?), I grumbled about how I would get in trouble by the doctors, how I would have to start the test over, and how I would probably have to argue with my insurance company. Further, I moaned about not even being able to do the simple things of life I enjoy anymore because of this stinking disease. I was in a real sad state when my wife brought me a cold drink and the ‘hotline’ number for the cardiac monitoring company.

So, in a few minutes, I called the hotline, monitor in hand with warning lights flashing. A nice, southern-sounding woman took my info and asked what kind of problem I was having. I went into my long story, apologizing for causing a problem, and whining about having to start over. She let me finish, and then gave me this stunning guidance, ‘Honey, just put it back on.’  I don’t think I really understood her- being lost in my sorrows- and I began repeating my problems. She politely stopped me, and reaffirmed, ‘Just put it back on,’ adding, ‘Press the button when you are ready to restart.’ This time it hit me. Wow, I thought…I’d just heard some amazing guidance!

Sarcoidosis is going to give us some setbacks in life…that is an unfortunate reality. We are going to get knocked down; we are going to have to rest and catch our breath (a lot of times); and, we are going to get discouraged and frustrated by this evil disease in our life. But, you are strong, you are a survivor; you are a sarc-warrior.

So, what do you need to do when you suffer a setback? Follow these steps:

1. Just “put it back on’ – Acknowledge your setback and your limitations, but don’t dwell on it. You are greater than your setback and limitations. Put your strength and warrior armor back on!

 

2. When you are ready, press the restart – Just start over….setbacks happen, but your life does too! Make your life your focus, not your setbacks! Restart your life with your setback behind you.

 

3. Repeat these steps as often as necessary.

 

Jim Kuhn

In 2014 I was diagnosed with sarcoidosis in my lungs, lymph nodes, eyes and skin. Earlier this year I was also diagnosed with neurosarcoidosis. The illness has caused me chronic fatigue and chronic pain, that is often debilitating. I was forced to ‘medically retire’ in 2016 because of my sarcoidosis and have been on permanent disability since then. I struggle with keeping to any schedule (like a normal work day) due to the fatigue, along with cognitive issues (fuzzy brain & concentration), balance, and stamina. In my ‘old life,’ before sarcoidosis, I spent 30+ years as a global business leader, primarily in technology services. My last 5 years of ‘work’ were spent as a full time missionary with my wife, with a global medical mission group. We would take medical and non-medical teams to developing countries and put on week-long (or longer) free medical, dental, vision, and pharmacy clinics. It was amazing, and I hated to leave it. I find I can only manage a couple hours of anything on a day to day basis. So, I try to squeeze in things I like, such as flower gardening, movies, and travel with my wife.