Monday, November 18, 2013

Winter cold.....F*k you

This is the time of year that I have a love hate relationship with, as I'm sure a lot of you do. There are so many new illnesses out there, and cold is a major factor in how they affect us. 

We all have to work, or have things we need to get done during the day, if we are not working, and when it is cold, I know that I, want to curl up in front of a roaring fire and stay there. For the whole winter. 

Realistically we can't. Ha! Don't I wish. I've talked a little about my illness in my past blog posts, but not what it really does to me. What it is. How it works. The name is Retro peritoneal Fibrosis. It's an auto immune disorder and a silent one. You cannot tell the person has it. It does not really limit us day to day, but in the long term will be the death of us. It's treated with Tamoxifen, which I have opted out of at this point. (it's oral chemo therapy) 

There is no cure for this, and when I was diagnosed 12 years ago, it was an orphan disease. Meaning, no research money for it, and very little known. 800 people in the world had it. I was one of them, and they basically gave me a year. As you  can see, I gave them a big fuck you and I'm still kicking. 

It's now being classified as a cancer, and so I am assuming more and more people have it. I still do not do any conventional treatment for it, and I have more and more flareups. What it does to me is hurts me. It's in between the peritoneum and the stomach and it's inflammation of internal organs. In the winter, it hurts more, and there are days where functioning normally is difficult at best. 

I do my days in blocks of time to get through. Mornings are consumed with getting the boys off to school. Then of course is my social networking and running my on-line business. Then its a break time, sorta... chores, shopping, laundry, ect. Then the boys are home, homework, dinner, a show maybe and then bed.  Pretty mundane, but it gets me through. I take Ibuprofen when I have the worst of the pain, but have lived with this so long, that I just sort of deal with it. 

Whats difficult is telling people about it..... when I am asked why I get sick so frequently, or why I'm not at a certain event, and so on. How do you explain what a silent illness does? Not easy. 

My out look on life is pretty positive for the most part, but I do have my days. I try to keep busy to muddle through those, and this is feeling like its gonna be one of them. This illness puts me at risk for non Hodgkin's lymphoma, Leukemia, and all blood disorders and cancers. Fun stuff. So far I have been lucky enough to dodge the bullet on these. 

So my advice to people out there who suffer from any thing.... we all have something we deal with, whether physical, or mental, or what ever it may be. Life is not easy, but don't make it harder by focusing on what you have, make it easier by accepting it and moving past it. 

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