So I'm not exactly sure why I am starting this right now. I'm getting over having acute bronchitis and I'm tired. I have a dermatologist appointment on Friday to see what's going on with my discoid lupus (lesions present on my scalp which is causing me significant hairloss). Also, I have another appointment with a kidney specialist at the end of this month. I am VERY worried about the degree of kidney disease or failure going on - I think I'm really sick. I saw this look on my doctor's face when she was reading the test results from a 24 hour urine test I had to do (basically you have to pee in a jug for 24 hours straight and then they test your levels - important for me was the amount of protein being lost).
I'm apparently losing 4,000 mg of protein per day and I'm still not sure what that means. It's pretty much all I think about right now. Well, to be more exact, all I think about these days is the life that has been lost for me - that life that I always imagined I would be living when I was a young girl thinking about what being an adult meant. I'm supposed to have lived up to my potential by now - and I guess the most irritating and depressing thing is that I think I would have if not for this disease. But then I realize that "potential" is bullshit and I'm striving to be at peace with myself, this disease, "where" I am in my life. Because in actuality things are pretty great - I have a fantastic (most of the time) boyfriend, a shitty (but not really) job that pays my bills and health insurance, a great apartment, wonderful friends, etc.
Okay, I realize this is just total stream of consciousness writing and nobody but me will be able to tap into it. Basically, I'm trying to cultivate mindfulness right now and I guess I think this might be a good way to get my thoughts and feelings out. Hopefully, maybe some other people will be sharing a similar experience - or at the least, learn what lupus is.
As I say, this is my first blog and my very first post so give me a break. Mostly, right now I'm not necessarily afraid I'm going to die (although the thought does cross my mind and makes me so sad for all I'll miss and for the people who will miss me), but I'm more afraid of the terrible treatment options out there if I have kidney failure, or permanently lose all of my hair.
If anyone out there is actually reading this, I'll try to be more coherent and grammatically correct next time around.