Surgery for MALS

Well last week (I think it was) I had the consult with the surgeon and I now just today I got the call that I will be having surgery for MALS on January 25th.  They will be tag teaming me and attempting to do it laproscopicly first to save on recovery time. This will be my doctors first attempt ever at doing this surgery and doing it laproscopicly, hence the tag team. So the other doctor on board is an experience MALS doctor who only has done this surgery by opening up the belly, he will be there to assist and if need be open me up and take over if they should find the need.  So I guess the choice is really out of my hands at this point I don't get a say in what happens at this point really but continue to read. My choices are simple stay in pain live with these diseases that are debilitating, risk surgery that may or may not work (my doctor gives it 70% chance of giving me some relief) the surgeon wouldn't give me any odds at all. If you research MALS you will find that sometimes surgery works sometimes it doesn't, I am going to be optimistic though that this will work for me cause this crappola sucks and I want out of this daily pain. 
The hardest part in all of this is I just cant suck it up.  No body knows what its like going though all of this, my world changes daily, I have 2 diseases that will never ever go away.  They constantly throw curve balls at me and I really do my best at taking one day at a time, but I don't look sick, but I am.  Its hard I'm angry, but really who wouldn't be.  Can anyone reading this say that they would have or would like to think about dying at 37? Because whether or not anyone one of you likes it I have to, and I do think about it for my children sake. 
People tell me I look great when they haven't seen me for awhile, its nice to hear, but in a way I feel bad, how do you let them know that yes I have lost 47 lbs in a short time, because I am sick.  Does it make them feel bad? Would it make you feel bad if you didn't know? I would feel bad if someone I knew was losing weight so fast because they were sick and not trying to lose it.  My point don't feel bad if you see me. I like the weight loss.  Just don't give me shit if I gain it back. Deal?
Anyway enough for today, just wanted to give an update and get that off my chest.  Hope everyone has a great New Year. Gosh I hope my 2011 goes WAY better than my 2010 did cause lets face it since Feb. 10 my world has be flipped upside down and now I am still trying to figure out my new normal. 
My pieces are still changing!
Chane

The Pieces Keep Changing

So I was asked to give an update and as I thought about it for a while, I wondered what should I write about?  At first I thought I should probably do a happy upbeat life is going great, I am thankful for everything blog. But then I realized that would be pretty much sorta a lie.  I say sorta a lie because I am thankful, I am thankful for family and friends that have been there for me this past week especially. I am thankful for the medicine my doctors give me in order to keep me going. And I am thankful for many many other things in my life which are far too many to mention.  I was also told by a wonderful friend of mine that I do not give myself enough credit so I will do that too.  I am doing pretty good in school right now.  Finals are next week and provided I do well on all of them I should get two A's and a B and if I am lucky I will pass my Math class. (its a pass/fail class) (Math is not my strong suit)  So some how through all my stresses I have managed to keep my grades up... GO ME!  Now that being said please stop reading now if you don't want to read my depressing, complaining and otherwise whining about my medical problems yet again b.s. Thanks.

However, life isn't so great right now, I haven't been feeling so hot.  The MALS has been acting up something awful, so much so that now I am on a steady diet of Compazine (an anti nausea med). Which by the way happens to be my new favorite drug of choice. FYI take my Compazine away from me and pretty sure there will be a hell of a fight on your hands! The reason for this new love of mine is the chronic pain has gotten much worse in my guts and I have started to puke now too. Oh the joy of being chronically ill. 
The FMD seems to be okay, I have had a couple of dizzy spells and headaches that are a bit weird but I chalk those up to mini mini TIA's and nothing to get into a fuss over.  There is not a damn thing the ER would do about them as they are over practically before they start anyway.  Oh I had pneumonia last week and still feel the lovely side affects from that, its been a joy too let me tell ya.
There are some mental health areas that need addressed too as you might have guessed due to all these things, as I am still not over the anger issues I have.  I suppose because not even a year into the diagnosis its just too dang hard to accept everything.  Is this normal is that normal.  It feels like I'm puzzle, but the pieces keep changing!  Not even the edges are edges anymore. Maybe that's the best way to describe how I feel. I told an instructor at school today that I think I am going crazy.  Ha maybe I am.

Anyway, I really hope everyone has a very Merry Christmas and Happy New Year, just in case I don't update before then.  Be safe, enjoy each other, and be kind!
Love,
Chane