July 26th, 2012

I wish I had really understood.

I really REALLY wish that someone would have taken me aside when I was healthier and skipping all those breathing treatments and hanging out in stupid smokey nightclubs and slapped the shit out of me. I really do.

I wish that I would have had some sort of avenue (like facebook) back then to reach out to hundreds of other Cfers and had been able to gather some wisdom from those who had gone through the shit that I am going through now.

The docs and the hospitals were so scared of cross-contamination that they kept us separated. It's only since the advent of social networking have we been able to reach out and create new efriends in others with our condition. I was too poor and too rural to attend any of the Cf camps before they closed them down. We weren't always closed off from each other. Do you have any idea how shitty it feels to be isolated away from people that actually understand what you are going through? After a while, I began to feel like a leper of lepers.

I know that having such regrets about not taking care of myself in the past is not going to change what is happening right now, but my mind goes there anyways.

I'm sick again. I've only been out of the hospital since July 17th. I am more than likely getting admitted again next Wednesday at my clinic appointment. This will be the shortest amount of time between stays that I have ever had, even in high school (back then, I would be out for three weeks before having to go back in).

I don't know what else to do. I feel like I have all this stuff I have to do. I have some things that need to be done, like emails and paperwork. Really simple things that feel like lifelong tasks at the moment. My blood sugars have been so crazy due to the illness that I am just lethargic when I'm not actually asleep. I sit on the couch and crochet. Then I get up and do a treatment. Then I either go back to the couch to crochet, or I go take a nape. I'm scared to eat although I DESPERATELY need to gain weight because I know that my sugars are going to skyrocket and make me feel like shit.

When I was little, my father used to administer my evening "poundings", as we called them. As I look back, it must have been so frustrating for him. To be given this task that would help me with my disease, just to have me scream and cry and tell him that he was hurting me. I swear, it was like he was trying to beat the disease out of me.

He would get angry and send me to bed early. I would bawl and run to my room. I used to stand by my bed and cry and curse god for hating me so much to give me Cf. I would think that I must have been a really horrible person in a past life to deserve such a thing. My 6 year old mind thought that maybe I had been Hitler and this is now my punishment (I had older siblings and the most horrible person I knew at that time was Hitler).

On a funnier note, I used to attribute his poundings to why it took me so long to grow boobies. :-P

And now, we are going to be talking about a G-tube placement. G-tube is a Gastronomy tube that goes directly into the stomach. It's used for people that have problems eating normally. I don't have this problem, but I need to gain weight before tx, so I'll be using it for night feedings. YES! Eating while sleeping! Maybe I can also just wear diapers and cut out the 4am trip to the toilet too. <---sarcasm. Cuz' diapers are TOTALLY sexy. <---more sarcasm.

My Aunt Trish is flying in Saturday night and I am way too excited. I haven't seen her in almost five years. She is my primary post-op caregiver and is flying in for the mandatory tx education. She'll be here for about three days. It'll be nice to see family. I haven't seen a family member for almost two years now, basically since I left Minneapolis. I wish I had the energy to take her out and see how beautiful this part of the country is, and the reasons why I love San Francisco.

Well, I'm tired and hungry again. Looks like eating and sleeping are up next, but I'm gonna put up a fight. I really want Thai food, so that means Grub Hub and an hour long wait. :-)

Sorry that my blogs have taken a pretty bad turn for the morose. I don't have much on my mind these days but survival, and my thoughts can be pretty morbid at times. Thanks for putting up with me. Leave comments if you like, I enjoy hearing from all of you!

~E



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