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Answering 'How Are You?' From the Maze of Chronic Diseases

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“Hey… how are you, Shannon?”

How am I? I don’t think everyone wants the real answer.

But here is the honest, scary truth — I’m lost in a maze of doctors who all seem scared to touch me for fear of anaphylaxis or death or that the insurance doesn’t want to pay anymore. It’s hard for others to know what’s going on because I truly don’t even know what’s going on.

My TPN (total parenteral nutrition) and central line were taken away because my insurance didn’t cover it anymore, and sadly, you can sometimes get treatment and other times you can’t. Getting treatment can be hard.

I’m not the hospital. I’m not better, and I won’t be better soon. I’m not stable, I’m not healthy, I’m not able to eat very much, and when I do, I spend time vomiting. I’m in pain, I’m malnourished, I’m not doing great…

Mood wise, I have good days. I have days when I am happy to be alive and thankful for the health I do have. When I am able to go shopping for a dress. I’m happy for laughs and giggles, and I’m happy for smiles and things. But I also have days when I can’t imagine living in so much pain. I can’t help but cry when the pain, the life I live seems too much. But I feel those emotions and then try to move on.

How are you? I will most likely never find a cure, but today, tomorrow, and for the rest of the weird life I live, I will keep going. I will fail, I will fall, but I will not fail my failing body. I will not stop going.

How am I? I may not be OK, but I’m happy. I love living my life. I love my friends, I love laughing, I love watching movies, I love TV, I love FaceTime, I love “The Walking Dead,” I love my blog, I love my friends’ blogs, I love vlogs, I love being alive, even though every day is a new day for me to die in a new way, and every possible bad thing can happen. But how am I? I’m glad… I’m glad to be here…

And to everyone else who is also lost in this maze, it’s all right to be lost right now. It’s all right to not be all right — you are not failing yourself when you ask for help. When you tell someone you are not all right, you’re truly being brave. It’s a good first step to make.

I’m dying, but I’m living. How are you doing today?

When you have theses diseases, you sometimes fall into that maze. But if you do, just remember the view can be very beautiful. I’m just praying that the maze isn’t made of corn, or else I’ll need my EpiPens and Benadryl.

Thank you for asking and caring.

How are you? Truly — how are you?

Originally published: September 7, 2016
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