Originally Posted September 24, 2011
For every action, there is an equal and opposite reaction. For every white there is black. For every wonderful day of weather you enjoy, there is probably going to be a rainy one or two coming up. The day must be followed by the night, and vice versa. No matter how dreary your winter, spring flowers will follow.
And so it seems with sarcoidosis. It stays in the background, sitting, waiting, looking, patiently hoping for an opportunity to get up, raise from it’s quiet and slap you in the face and remind you it is still there, and that it has always been there, and will do everything in it’s power to stay with you.
The last two months were very peaceful, relaxing, enjoyable and detached I have had for a while. I took two vacations, my mother and my wife’s family visited, we went on a road trip. I felt pretty fine, just a few days of hard breathing, but nothing to really complain about. It was my period of spring after a period of colds, suspected pneumonia, intestinal pain, tests, scans, blood draws. It all seemed so quiet, so peaceful. Two months of not seeing a doctor, only one blood test. It was peace.
My thoughts very seldom, if ever, went on my disease and my conditions. And I was relaxed. I felt like me again. I am about to restart massage school after taking a three year break after finding out about my pulmonary hypertension. I finally felt well enough to return, to finish what I started, to begin to live again.
But sometimes shit happens. And it seems there is a possibility that my sarcoidosis may be out of remission and showing it’s ugly head again. This week I went for my routine visit to my sarcoidosis specialist, no complaints, no troubles, no worries. I did a six minute walk test, which I thought went well enough, and then my routine pulmonary function test. I always blow through those, no pun intended. The results are always the same, or a little bit better than the last time. Cockiness can warrant a slap in the face, because I guess I was cocky on Monday, thinking that I was just going through the motions of the tests and everything would be fine.
Instead I left Mt. Sinai with the new instructions that I need to be on oxygen all the time, except when I am at rest. A sleep study test I did some time ago also determined that I need to sleep with oxygen now. Normal activities are enough to drop my oxygen to levels that would put additional strain on my heart. The tests also show a possibility that my sarcoidosis is acting up again. I have a PET scan scheduled to see if it is active.
I try to be a positive person, but there are times when you just have to sit back and ask, “WTF?” Will this freaking disease never leave me alone? Is it not enough to have given me the addition of heart failure and pulmonary hypertension? Now it needs to attack my lungs some more? Maybe even the heart too? I just have to keep my positivity, make some lifestyle changes that are very overdue, and beat this thing again. I’ve done it before, and I will do it again, and I am going to invite everyone to my 84th birthday in 2046. You can slap me as hard as you can, but I’ll just blink, rub the spot and move on.