[kbuchster]

Hi Y’all! I have a rare disease called COP (no D!) – Cryptogenic Organizing Pneumonia. I also have diabetes, Cusing’s Syndrome, Sjogren’s Syndrome, arthritis in my back, hands and elbows. I have a slew more but I was supposed to die, according to doctors at Presbyterian Hospital in New York, it will be 9 years this May (2016). I don’t go by expiration dates like the milk in my fridge.

The arthritis in the hands and back are from having to carry oxygen with me whenever I go out. Mainly doc appts. but I’m also addicted to the beach.

Coping is something you do each day. Is it a good day? Is it a bad day? If I get up, will moving around make it better? Will it make it worse?

Those who face diseases that can rear their ugly head, or make every day a struggle, will find friends and family will not be able to understand, no matter how educated they are. You find out quickly who your real friends are (including family members). How many times have I had to call off a dinner, lunch, get together because I was physically or mentally unable to? Did those involved understand, over and over? Those are the ones to hold onto.

I thank God I found this site and I hope everyone can connect and find at least one friend who understands your struggles.

Blessings to all!