Wednesday, April 7, 2010

What's it like?

Sometimes i dread this question and sometimes I yearn for the right person to ask it. I want those that care to ask. Friends that have been there for years and years and still don't understand. But I also don't want to tell someone that is just asking to kill time or show sympathy.

I have accepted the pain, the drugs, the doctors and all the unknowns. This week has turned into an interesting one. I went to my PCP on Monday about a 3 week long headache. To me going to the doctor was a waste of time since I knew the answer would end up being "just Lupus" but with all the people nagging me I figured I would kill two birds with one stone and ask about a side pain that was getting worse. And of course, my addiction to social media sites meant that I would share where I was. But I wasn't ready for what people told me.

"I'm sorry" that's what they said. I want to scream. Did you give me Lupus? then don't say you are sorry, cause you have no reason to be. It drives me crazy and really I know these people are just trying to give me some encouragement and show they care. But the words "I'm sorry" don't show me that. I don't want people to apologize for me having Lupus. After 10 years of dealing with it I have accepted it as my path in life and I am going to do everything I can to make sure I follow it as best I can and share my pain and resources with the many others that have it.

My other issue is friends that have been around me for years and still expect me to pitch in or go out. I can't always do the things I want to. Maybe I have been "faking" it too much. Maybe they can't see that holding a handful of playing cards is crazy painful. Maybe they don't see that when we go out on a friday night I spend Saturday napping off and on. Maybe they don't see that the weekend getaway would take me another 2 days to survive.

And i know that some of their ignorance is my fault. I don't want to talk about it publicly, I don't want to draw attention to myself when I am feeling the worst, and I don't want you to make me feel bad for having to say no.

As I am writing this I just realized that this month marks the 10 year mark to my diagnosis. Wow 10 years. Part of me wants to weep and the other just block it from my mind. It's hard, really truly hard. But I know my Lupus only effects a fraction of what it does to others and I need to be greatful that it hasn't gotten worse.

tomorrow I go in for a CAT Scan of my liver. We will see what happens in there. I really hope this is just nothing, but I fear it is something....

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