Living with Sarcoidosis

Living with Sarcoidosis can be very frustrating. Since most people have never heard of it, they don’t know what to make of it. Let me assure you, sometimes we don’t either. You can get sarcoid any where in your body, any organ, every piece of you may be affected. Pulmonary sarcoidosis is one of the worst. As in my case. Let me tell you what it’s like, so that you’d understand.

My Sarcoid

It is not easy living with this. Having to give up a lot of the things you like to do. Being home bound most of the time, not being able to even carry groceries at times. When you have the desire, as I do, we can get some things done, but even that is not enough. It is not easy to carry that oxygen tank every where you go, sometimes two or three, depending on how long you’re going to be out of the house, and then being hooked up to another breathing machine while inside the house. People tend to give you strange stares and feel pity sometimes without even noticing. That’s OK, we understand. Sometimes they see me walking, or on my scooter and then driving, I know this must drive them crazy, but it’s depending on how I feel that day. The reason for the scooter is because I can’t walk for too long, so if I’m going to be in the neighborhood, I take it instead of driving.

Also a lot of medication is needed. As I said before, prednisone is the most prescribed, but there are more. Antibiotics are a great part of mine, used to fight off infections. You see, I can come down with almost anything, since sarcoid affects the immune system. I can not give you Sarcoid. It is more probable to get something from you, than vice versa. If you see me wearing hospital masks, which I use a lot (not trying to imitate Michael Jackson), I am just trying to protect myself and it’s not because I have come down with something contagious. Still I go on with my daily routines as best as possible. Deal with every day things, just as you would, just take my time doing them, and do it at a slower pace.

The harder part is dealing when they say, “But you don’t look sick”. Thank you, I don’t want to look sick, but what am I supposed to look like? Truth is I am not as healthy as you are. I may be able to walk, but not too far. What for you is a walk to the store, for me is a walk across town. While a little cough for you is just inconvenient, for me it could be life threatening if my oxygen is not near me. My coughing is not contagious, it’s just the lungs are not as flexible as yours, they are hard, scarred, and don’t hold too much oxygen, so I will cough more than you. Right now my heart is also starting to be affected, adding to the shortness of breath and coughing. All my medications make me moody and no matter how hard I try, sometimes there’s nothing I can do. They also make me anxious and angry, when I can’t seem to be able to do something. The same goes for other sarcoidosis patients.

I am not looking for excuses, pity or charity. Just so that you’ll be more informed about what sarcoidosis is, what it can do and what it’s like to live with it from day to day. If you have read all the way to here, let me thank you in advance, hope now you have a better perspective and have learned something new. You have a good day. 

-Luiggie