Oh so much time...to waste

Wow it's been awhile. So I've been on and off I.V.s since January with only a month, at the most, in between. Last time I was in there for a full week which is the longest stay I've ever had because they generally let me go home on home care after a few days. My base line is not all that great so when someone asks me how I'm feeling I want to say good but in truth I feel pretty shitty most of the time, I just feel better in comparison to how I felt before. I'm afraid that when people see me and I look ok and I say I'm good that they'll be asking themselves why the hell I won't get my ass off the couch. That is where my ass has burrowed for quite some time now and frankly, it's staying there. Thank god for all my little servants (and I mean that in the most endearing way guys), I'd be crying in a ditch right now if it weren't for them. I have tons of trivia games on my phone and computer that keep my mind going. Day in and day out, more of the same. I'm luckily one of those whose deterioration is happening slowly and the docs know that so I have a feeling my wait will be a long one. They know I have time to waste...away....slowly. Time to perfect my little ass nest. I go to my CF clinic tomorrow. I get to find out how my G.I. test went. The last time I was in the hospital I had to eat a high fat diet for six days and then collect my shit in a paint can for the last three. Oh how dignifying. This was all to check my pancreatic sufficiency. Back when I was really young they didn't put me on enzymes right away like my sister. I was able to gain weight normally and I didn't notice any g.i. effects as do most CFers. I was finally put on ECS 8s at the age of 12 apprx. I never thought I needed them. It didn't matter if I missed taking my enzymes, I never seemed to have problems in the stomach or bowel area. So one day I just stopped taking them to see what would happen and nothing happened. I could gain weight normally and still, no stomach problems. I told my doctors this and we just assumed that I was one of those lucky ones that didn't need enzymes. Well now that I'm on the transplant list the doctors want to confirm my pancreatic sufficiency because it will affect the dosing of the medications I will have to go on. Obviously someone whose pancreas doesn't work well at all will need a higher dose than others based on the fact that most of the medication isn't being absorbed. So I'm curious so see what the results are. I don't really expect too much from this visit. It's basically a follow up to stopping my I.V.s last week. I don't think I'll need more right away. Monday I had transplant clinic and that went ok. I don't really see the point of those things. They know where I stand. They talk to my doctors. I'm already on status 2, what more can they do anyways? It basically goes like this:
THEM - "How are you feeling?"
ME - "Same as before."
THEM - "So I see you needed IV meds again."
ME - "Yep. It has been a month."
THEM - "Okay well keep us posted."
Am I ever glad I waste my day for that. And let me comment on the bitch that greets us at the counter of this place. Why is that there are so many bitchy receptionists in this world. I know there are good ones too but there are A LOT of crappy ones and this one falls into the crappy pile. In a place where everyone she meets is dealing with so much shit you would think she would be able to look at her own life and think, "This isn't so bad." Maybe her life does suck though. Who knows but she's one snarly biatch. Our nick name for her is smiley.
Today was a rough day for humidity. It felt like the air weighed a ton. Physio went okay but I had to push myself extra hard to get through it.
Anyways, I'll try to update tomorrow on how clinic went.

Later,
luv ya,
Carla :)