Yep. Time to talk about the illness. I got a call today from my GI doctors nurse. He finally decided to man up – to an extent – his nurse called me. The appointment was changed so that I will now be seeing the man himself on the tenth of December. That is going to be interesting. I am going to try my best to give him a chance. But I will not let him treat me as less then I am.

I find in times of the really deep depression I focus on the illness and what it does for me. The other day, I found a wierd spot. Of course, prior to this – would have just thought – hmm – new mole? But now – the first thought is – ok – need to tell the medical people that. Then the mind gets carried away – wondering what that bump is.

But when I feel good (today and yesterday I feel pretty good overall) – I think about it in terms of – someday something is going to come up that I am going to have to deal with (being diagnosed with what I have and the age I am – 31 – I probably should have had at least a few major surgeries by now) but am completely grateful to be as lucky as I am.

I am not sure if the diagnosis changed me or if I changed because of the diagnosis. But I think I am stronger now. I know I have a better circle of support because of it. I have made some friends that I would not trade. That is something I never had before. Now I have some people that I can tell anything and trust that they won't judge me. It's been a hard thing to adjust my thinking to – knowing that there are people out there who don't judge you by how you feel… and actually want to know when they ask.

Why does this matter? Sometimes I wonder. My family is not behind me. My parents – I'm not even sure they know about the diagnosis. They were against my being tested so I haven't kept them in the loop. When I told one of my sisters that I was positive – she called me back the next day and asked if I was sure I wasn't making this up… and the beat goes on.

I think my husband (E) is scared of it. I know he was a little scared of the depression stuff. I think that you pile on something that he feels is real – it makes it that much worse. So he has his own junk to work out – and hasn't really been the best support.

But what I think about? I look at Sequoia and I know there is a little girl in the state I live in that is about her age that has Cowdens. I want that little girl to know that she can grow up and have a good life. I want her to see that it is worth it to fight for what she needs. If I want her to see that I also have to believe it. And that's another thing I am trying to work on.

1 Comment
  1. leslie 9 years ago

    I am also burdened with disease. My kidneys are just for show as I like to say, but I don't know how you do it without family. I am here if you need to talk. What is the disease you have? No judgement really just want to understand it so I could maybe give better advice. I used to be in the medical profession before I got sick. If you feel comfortable with that just let me know. Stay strong!

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