Thursday, January 24, 2008

I can't believe people read my first post!

So, I created this blog after reading http://www.flowonlupus.blogspot.com/ as I found her message so inspirational. I really didn't think anyone would read my thoughts and after creating that first entry, I kind of stopped thinking about it.
Well, I was completely surprised and happy and excited when I decided to check it today (while at work - don't tell) and I saw 7 comments all from great people out there dealing with the same issues that I am. I can't tell you how completely inspired I am by all of you! Apparently, I'm going to have to start writing in this blog every night now because I don't want to disappoint my audience :)
This has been a strange week for me as tomorrow I have an appointment with my new Nephrologist to discuss what's going on with my kidneys. I've been waiting for this appointment for a month and a half and now and I feel like I've built it up so much in my head that I'm bound to be let down by the outcome - no matter what that is. I know that most likely a kidney biopsy will have to be scheduled, so tomorrow probably won't be the day where I get the definitive answers and treatment plan that I so desperately need. Not knowing is so much worse for me than knowing because at this stage anything is possible (i.e. kidney failure, dialysis, chemo, etc. - I just don't know).
I feel like I've been holding my breath about everything in my life until I know what's going on with my kidneys. I desperately want to get a new job, but I can't even begin thinking about it until I know what the immediate future holds in terms of my health. Anytime that Lupus rears its ugly head and gets in the way of what I want to do my immediate reaction is that of a petulant teenager - "Lupus, you can't control me! I'm going to do what I want to do!" But in the end, I always follow my doctor's recommendations and live my life to the best of my ability, weaving in and out of this lupus maze. Does anyone else out there ever feel like this?
I read an amazing quote yesterday that really inspired me: "Everyone dies, not everyone truly lives." I'm kind of meditating on that right now and for some reason it helps.
I'm sure I'll have much more to write about tomorrow.

3 comments:

LFA said...

Morning Butterfly Girl ... hope your appointment goes well.

Also wanted to let you know I gave you and your blog a "shout out" on the LFA blog. Check it out http://lfa-inc.blogspot.com/. My best to you.

Wick

shelliwiley said...

I was so excited to find this site this morning when I was surfing the Internet. I've had a lupus diagnosis for a few years now and have spent that whole time feeling totally 100% alone. The doctors are all so matter-of-fact about things, friends and family have no idea what is going on and can't even begin to empathize with how I feel some days. It's a real solace to find a site like this with other people who feel like I do! Thank you!

Besitos said...

Greetings Butterfly girl,
I'm about to go for my first appointment to talk to the Rhumatologist, as there is a suspected Lupus, but only further tests can clarify.

And yes, very lonely, and unclear of what lies ahead. I've had asthma all my life and ruptured my spleen, so prednisone is not my favouirite drug. But, hey...if I have to take it...well so be it.

But I found your blog really comforting. These biopsy treatments, are you awake or sedate when they sample your kidneys? I'm a bit shocked about that.