Wednesday, August 25, 2010

Team Nuclear

Follow up specialist appointments are always scary. So when it is good news, I'm not sure how to take it, or if I am understanding correctly. I'm sure it's too good to be true.

Somehow, my blood levels are 'over normal' - just slightly but over twice the amount in December. 

My organs look okay, and my other tests, the ANA's are the bitch. They are always so confusing, but also have two months of being slightly negative. Which is confusing. 

I asked what was happening, and he didn't have an answer. I asked him about my feet - that besides the extreme pain - they go from blue to white to red with white spots. I asked him about the twitchies, and told him of the new suppliments I was taking and what or how much he reccommends.

He said "Well, you tell me then". Sigh. He did match my GP's recommendation of two LBP's at night, which I suppose is not so bad in the scheme of things - it's not chemo, and it's not other opiates.

This disease is one where  you will never get a concrete answer, and a positive can be negative and a negative can be positive. It's a fucked up brat, that takes alot to fight it, physically but mentally also.

It's an invisible disease, which means double the fight. No scars, nothing tangible on the outside - just a body tired of trying to fight itself. He is very concerned with the fibromyalgia still. However, no real plan as of yet.

I'm going nuclear on Monday. I've had radiation two years ago, and I said I wouldn't want to do it again. Who am I to say no to the lupus specialist? It wasn't an option. My option was to go to the hospital or to a satellite centre - I chose the satellite centre. 

I went to the hospital first, and that was when I was able to walk with pain, but I want a smaller place, a reasonable parking lot and it is staffed by hospital techs and nurses. 

I have the experience so at the very least I know what to expect. I promise though, I won't tweet the funky colours that will be peed out eventually.

And if I have to take out my nose piercing, I will be pissed. ;)

This is a song that was shared by a dear friend, and is my theme of the week.

Thank you for pressing the shiny button on the right, and for sharing this blog. There are quite alot that it helps so much with, from parking, forms, to the day to day expenses that are required. That you think enough to share is humbling, and thoughtful and I thank you from the bottom of my toes. Thank you.

1 comment:

  1. If you can, you might want to get a friend to go pick up a non-metal retainer for your piercing. I know I can order them online too.
    It can be a good thing just to have in case you end up needing an MRI or a head xray at some point.

    I have such mixed feelings about negative test results. "oh good, that's not wrong" but then "if that's not it, what is? Oh gawds, will the docs just assume I'm crazy now."

    I hope the radiation helps.