Sarcoidosis

You have sarcoidosis. Ok. so I have sarcoidosis. What is it and how do we fix it? 1993, Mercy Hospital, Pittsburgh, PA. I remember that day well. I was in the doctor’s office having a tube put down my throat into my lungs while I watched. I wasn’t really that brave. They did give me medicine to numb the area where the tube was bending through my insides. It was kind of interesting. Snip. Just a tiny piece will tell the story. But the story doesn’t end there. Nothing in life is that simple.

Sarcoidosis. The chest x-ray showed tiny bubbles (isn’t that a song?) clustered in one fourth of each lung. Those tiny bubbles were making it harder for me to breathe, were making me tired, and were causing a bit of chest pain.

My next question was “how do we get rid of these things?” Inhaled steroids. Sounded simple enough. I would puff on inhaled steroids and they would just go away. Well, it worked. I puffed on the steroids and the sarcoidosis went away. For awhile.

It’s 2007. Enlarged lymph nodes in my neck. My mom died of lymphoma and my grandma from Hodgkins. Could this be? I’m so tired all of the time. My body aches all over. I’d better get it checked. I did.

“We will need to do a biopsy. Your chest and neck xrays came back with abnormal findings. The lymph nodes in your neck and chest are enlarged enough to be suspicious. It could be the sarcoidosis, but then again, it could be something else. We need to check.”

The next thing I know is that I am undergoing a biopsy. This is the kind of biopsy that can be performed only once as it is quite risky. They sliced open about a two inch gap right where the indent is on the top of my clavical aka breastbone. This area is right at the base of your throat, it’s soft and it’s where you can put your finger in. They went inside to take a look around.

Minor surgery? Hmmmphh. It took several weeks to recover from the pain of that surgery. What did they find? Sarcoidosis. I was grateful that it wasn’t lymphoma or Hodgkins. That’s the good news. The bad news is that when the enlarged lymph nodes come back again, there will have to be one large enough to lance from the outside. If the blood tests are normal then I will know it isn’t lymphoma or Hodgkins. If not, then that’s another story all in itself.

Sarcoidosis has only affected my life in a minor way. It can attack just about any organ in your body, but in mine, it has chosen the lungs and the chest the last two times. I do get some pretty severe chest pains and because I have asthma, it can be difficult at times to determine which disease is causing all of the problems.

Sarcoidosis is not a good disease since it is one that baffles the doctors because there is no cure. I had a very hard time getting an increase in my life insurance because it is considered to be a very bad disease. I did get the insurance increase eventually, but a diagnosis of sarcoidosis may affect your ability to get insurance. It certainly did affect my rates as I have to pay more for my insurances now as a result.

It’s also difficult for individuals to get on disability with sarcoidosis. Your life can be going along normally until it hits. Then days or weeks go by when you have pain and just want to sleep, but in the real world, as a single mom, that just never happens.

My point is that sarcoidosis is painful and does make you tired, but I have been living with it since 1993 and am still able to function almost normally. If you don’t think about it and don’t worry about it, life can continue to be a blessing. If you focus on it, you can scare yourself to death. It can be found in just about every or any organ. It can leave scar tissue and it can cause some permanent damage. In spite of all of this though, keep forging ahead and deal with each problem as it happens. It does say in the bible not to worry about tomorrow because today has enough of its own troubles. It then says, “trust in the Lord with all your heart and lean not on your own understanding”. Do both and don’t let sarcoidosis rule your life. You rule it.