Hi Friends,
I'm sure some of you are getting to know my sick sense of humor as I getting to know some of you. Now I know that some might not find this funny but some of you will and will really go off on it...some will be like "What a jackass" and that's okay....I'm used to it. For starters, just want you all to know that I am trudging through this disease myself. I was diagnosed 2 months ago with pulm. sarc and the prednisone treatment has been horrifying. I try to focus on the benefits and not the side effects, but I'm sure you all know, sometimes it is impossible. I was on my 2nd day without any sleep yesterday and had threw my back out from the "redistribution" of weight in my gut. I have not yet learned how to carry this weight. But I have to share this conversation because if someone smiles just a little bit, then it is worth it.
I am really close to my parents. As of yet, they haven't educated themselves on sarcoidosis, as I think they are in somewhat of denial that their daughter has this. My parents are extremely funny and have the biggest hearts in the world. And they are frightened, which makes me sad, but I think they are ready to learn what this disease is and here is the proof...........are ya ready?
My mom and I are driving into Omaha and she says "So, do you still talk to the people on the website about the sarcoidosis and the prednisone?" I say "Yes, all the time". She says, "So, do you like talking to the Sarcoidians?" I start rolling. I'm like "What?". She says "What do you guys call yourselves?- Sarcoidians?" By this point, I'm doubled over in laughter. I said "I didn't know we had to have a name." It was just so funny. I said "It sounds like two things to me. One is that we NASA has called out "Houston, we have problems, the Sarcoidians have landed and are invading- or "Why, yes, I'm Sarcoidian, you know, from that little country by the tip on Antartica, Sarcoidia!"
Needless to say, I told her we haven't named ourselves and not to feel bad. She said "Well, everyone that has a disease seems to have a name, but you guys don't". She just may have named us! God bless her heart! I'm just really glad she starting asking about it, it's here and that's the reality and I think she's starting to accept that we are not dealing with the common cold. It makes me feel bad for parents, I'm not one yet, but I would think that my parents are feeling pretty helpless. And they have been walking with me through this and there have been some really scary times with the breathing and times have I have been an absolute terror on this prednisone (really trying to work on that!)
Anyways, I don't know if anyone has coined that term before, but one of my coping mechanisms is humor. We still have to laugh. Not all the time, but if we can laugh or smile just once, even if we can only do it one time a day or week, we deserve it. And please don't think I'm making fun of sarcoidosis or any of us, I'm not that twisted. Just trying to make the best out of a life shattering situation..........hope this finds you all well and always praying, Dawn.................