This Past Week

I will be honest this past week hasn't been my finest. I've been bitchy and complaining to my entire family and taking this whole thing out on them. I yell, cough my head off, swear, you name it. Its just been a really bad week because I've realised I don't know what to do anymore.

You have to understand after years of being in the hospital and as a CFer I know what I'm doing. I am what I call a professional patient. I know hospitals and illness inside and out. I know when I'm sick and when I should wait it out for a while. I know when I have a lung infection, I know when my o2 stats are to low or my diabetes is out of wack. It's scaring me that I don't know whats wrong anymore. Too much o2 ? or not enough? High heartrate for no reason? shortness of breathe sitting?, feeling sick to my stomach, shaking from high dose cortisteriods, shaking from to much o2?? I DONT NO. Am I so sick I should be in the hospital? or should I just be calling clinic? Which clinic do I call? transplant or cf ? or both?

I'll be honest I loss some faith in the cf clinic this week when they told me they had no idea i'd had my assessment and was already listed for transplant ? WTF? I know don't swear or freak out, BUT SERIOUSLY? They...THEY sent me for assessment in May, Ive been in the hospital 3 times since then..and I got listed in October...and they were told this...they knew this....sooo what the heck? Not only that..they had no idea i was in the hospital in November? I don't no what happened last clinic but I was looking at them like they were nuts. Whoever was in charge or writing my chart last time I was in is getting a BIG F. I just couldnt get over the shocked faces of my clinic nurse rachel (Ilove her) and one of the docs..god nos i forget her name :p who had seen me 2 weeks ago.>ADMITTED and just blank stares.."really you were admitted" -doctor "Yup , 3 weeks, you saw me when I was in hospital"-me

Ya not a good moment.
But back to the point of this. I don't know whats wrong. I mean I know my lungs are getting ready to kick the big one, but last night I didnt sleep, I started coughing, then i was hot, then cold, then feverish, then I woke up with blue finger nails and realised..."damn" i need more o2, turned up the o2 ..then got shaky and out of breath..and got up cause it was like 5 am..took my predisone and all the other steriods and in an hour..was feeling better...and went back to bed and slept till lunch...sooo im assuming this is all predisone related..and YES now I remember why I hated predisone in highschool so much..i had forgotten after years on the same dose and no issues all this is really hard to get use to again. I just keep thinking PAGER GO OFF.

Im being impatient I know this. But I don't think Im patient enough to wait a year or over a year...I don't have a choice..but I keep thinking..how the heck am I going to be able to stick this out till then? I've never been this tired, out of breathe..and weak. I keep getting morbid thoughts ...planning my own funeral..because I don't know are they going to get me lungs in time?
The only postive news I have to report is I looked up my size and blood type and appartently its pretty common..soo I might not be screwed that way. Its just frustrating.. I told cf clinic Im now status 2 on the list..and they were like "OOOO any day now" ..and I felt like slapping someone lol ....Its like dont get me hyped up for something I want so bad ! Don't get me thinking of how awesome of a christmas gift that would be. I mean it could still be months...
Any chest pain and Im freaking out , I have panic attacks..literally. I never get panic attacks. Im SO afraid of my left lung popping again..and if it pops im screwed. I always have my cell phone on next to my head just incase so i could call my parents upstairs ..and call 911. my pager and phone are now extensions on my body.
Im down, depressed, and at this point wish all of us cfers could hangout..because Im lost. I don't know what Im doing anymore. I know if I go to emerg and Im not sick there going to think Im mental... ive done this before..actually september.. :p and i got lectured that I didnt have a lung infection..and november appartently i didnt have one either yet..my pfts keep getting worse and i cant breath..they say its all inflammation...SO STOP The inflammation>!!! if only it was that easy.

Ive stopped thinking about the bad that could happen after transplant, the many ways I could die during, after and post hospital stay. If it happens , it happens...im trying to write letters to everyone but its so hard..i dont no what to say....

I just want to be that spoiled little kid that kicks the floor and says " JUST FIX ME!" i dont want ur pity I just want to be fixed.
Its the fact that I walk from my bedroom to the bathroom and need to take a break. And walking upstairs from the basement to the kitchen is almost impossible. I don't know how long I can do this and Ive never thought that before. Everyone says Im strong. Yes I am strong , but I am because I have to be, I dont have a choice, either deal or die ..pick one. I've found just going with the flow is alot easier on my body then fighting with it or sitting in a dark cloud of misery. I keep getting called an "inspriation"...yumm Ive done nothing inspriation im sorry..staying alive to me is not that at all..its merly trying to survive. When I make world peace happen or climb everest...call me that then lol

a very smart person said to me
What doesnt kill you. Doesnt kill you lol the rest is bonus
Im in a weird mood.