No matter how positive you are about life, there are times when that positivity gets thrown out the window and replaced by unadulterated frustration, especially when living with a chronic illness like sarcoidosis.
If you follow my blog you know that I am an anomaly, and doctors have no explanation as to how I am not only alive, but thriving. If you were to see me walking down the street you would never believe that I have Pulmonary sarcoidosis with stage four scaring of my lungs, cardiac sarcoidosis with heart failure as a result, an implanted AICD (twice) , unilateral diaphragmatic paralysis, a hole (pluged) in my heart, had a mini stroke, osteoporosis of the spine (thanks prednisone) , osteoporosis of the hip (thanks again prednisone), migraines, severe cluster headaches, had secondary pulmonary hypertension (which I was cured of and totally baffled doctors) and oxygen for sleep, exercise and any strenuous activity.
I climbed to the top of Mont St. Michel in France, without oxygen. There is an uphill cobbled stoned street for 200m and then a 350 step staircase straight up to the abbey. Last year when we visited The Netherlands, my Apple Watch clocked me walking a total of 48 miles (without supplemental oxygen) over the eight days we were there. Yet, with all that, when I get under the weather, it is cause for concern amongst my doctors.
For the past couple of weeks My heart rate was accelerated even at rest. My rate would get up to the 130s just sitting. Then my breathing started to get tight. Fatigue. Body pain. Nausea. All the signs that sarcoidosis was flaring up.
I did the cardiologist and pulmonologist route with the mandatory tests and waiting for the results. My heart medication was switched and joy of joys, prednisone increased.
It just always feel like I made so much progress with this disease and then when I begin to get comfortable with myself, it raises its ugly head. And it is frustrating.
I hate the fatigue and all the other symptoms that come with a flare up. And I get frustrated. And angry. And I allow myself to feel those things. I don’t deny myself. Then I pick myself up, dust myself off and try to live as normally as possible because dwelling on the negative only prevents you from seeing and appreciating all the beautiful other positive things in your life.
And most of the time your body is just telling you to slow down.