Wednesday, June 2, 2010

In The Midst Of "Fibro Fog"

Hello, everyone!
Whew, this is one day that I am glad is almost over. I am so tired, I can barely keep my eyes open and it's not even 6pm yet! Pretty soon my husband and I will have the same bedtime as the school children, or going to bed as the sun is doing down! Gone are the days of young, where I'd be revving up to live the night life. In my teens and twenties, I LOVED the night life and felt more alive and functional. The mornings would be horrible for me and I couldn't ever get awake before 1pm most afternoons. That is why when I worked, I worked the night shift. Not because it's quieter (anyone who says THAT obviously works days as night shift was NOT quiet at any hospital I ever worked at!) but because I was a lot less stiff and my joints had a long head start to be functional by the time my shift started at 7pm.  And the infamous "fibro fog" would have lifted by that time, too. Not always, but most times.

I don't know if I ever explained the term "fibro fog" to those of you that don't have fibro. It's a condition that renders your brain completely blank at certain times of the day or night. It brings no minute it's here and you couldn't have a rational thought to save your life and then the next minute it's gone, and you can think again!  It like a heavy blanket over your just gets "dull" if you know what I mean. That's the best way I know how to explain "fibro fog."  It just makes you feel numb and dumb!!! People ask a question and you just sort of stare back at them, not knowing what on earth they are talking about!!  I guess when you are older, it's called having a "senior moment." Whatever the name, it sucks!!! And I've been in this fog on and off for a matter of a month now! When I need my brain the most, it takes a hike!!!

Anyway, today Frankie had his PET scan that will show his surgeon if he has any "hot" spots inside him of cancerous activity. Cancer cells grow much quicker and use up glucose, so with this test, he is injected with a radioactive dye based on glucose so the cells inside him that "gobble" the glucose up the quickest will light up on the scanner as being "hot" or red spots.  This means that that area of his body has a tumor there that is quickly growing and using glucose. If nothing is seen on the scanner, then he is "cold" as nothing has eaten the glucose injected inside his system. We are hoping that is the case. But, if worse comes to worse, we are catching this at the very earliest stage and treatment options are much better. In Frankie's case, the only options are surgery and that medication called Gleevec or Sutent.  We will know much more after the surgeon gets the results and see what course of treatment he should be started on.

I'd be lying if I said Frankie and I are taking this well. We are both very scared and worried inside. We've dealt with this before and thought our battles were over, but nothing, I"m finding out, is EVER really over with. It just kind of lurks in the background, waiting to pounce.  We both haven't been sleeping well, so naturally my fibro is taking full advantage of this fact and the "fog" is worse than ever. I don't even know what day it is, for Heaven's sake! I didn't learn until late last night it was Tuesday, not Monday like I had thought!  So I missed "Hell's Kitchen" premier because I thought it was Monday night! :(  I swear, I need a keeper!  Frankie and I have so much going on at the same time, our appointment book is just a big mess.  If we didn't have doctors to go to, we'd have no where to go!!!

The swelling in my feet has been horrendous today. My shoes gouged into my feet, leaving deep crevices in them that hurt sooooo bad. After I write this post, I'm going to lay down, prop them up, and call it a night. I waited over 2 hours in the little waiting room at the PET scan place and just sweat my butt off as I don't think they had air on in there.  It got to be 97 degrees today and my hair was just soaked. The receptionist felt for me and said, "I turned the air up more for you!"  (Is it up or down for cooler? See-that fog again!!)  ANYWAY, when the test was over we got back out onto the roads of rush hour Phoenix. My favorite time of day!!  But we finally go home and I took off my damp clothes and got into my nightshirt. My feet are KILLING me....swollen, pain, pins and needles, everything rolled into one.  Tomorrow I gotta go shoe shopping at Walmart and get a larger shoe. Hopefully they can find the cause of my swelling and fix it.  I keep praying for that!!!!

Well, next on the calendar is Frankie's test on Friday where the surgeon takes a camera down his esophagus into his stomach and examines what is down there. Hopefully NOTHING is there. Then he will inspect a little of the small intestine. Maybe take some biopsies if able. Then we see what happens with the biopsies and when he will be scheduled for surgery to have them removed.  So please keep us in your thoughts & prayers. We need 'em and we pray for you, too.

I'm gonna close and give my poor brain a break. The heat is here to stay in Phoenix, we'll be up to 110 by the early part of next week.  Why can't we have these health crises during the winter?????

Hope you all are happy and healthy and thank you for "following" me along with my stories.
Until next post,

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