My Hell - written in October, 2007
Today was hell.
I hate going to my clinic appointments by myself. I get all upset and there's no one to calm me down or support me when I'm scared. It's just me.
Allergy clinic - did PFTs, my lung functions sucked. Got all upset and was crying while waiting for the doctor. Doctor was an ass - no surprise there. I've met him before, he was an ass before.
I got my flu shot. Yay. I made them let me re-do my PFTs upstairs in the lab. The nurse who gave me my shot said it was too late in the day and that PFTs take an hour. I told her to stop giving me bullshit. I've been doing them since I was five, and they don't take an hour. They know me personally in the PFT lab. What bullshit. I had the receptionist call up there and of course, like I said they would, they took me.
I redid my lung function tests... and they were better, but not great.
My FVC (full volume capacity) was only 80%
and my FEV1 (air forced out in the first second) was only 46%
RAR... I want those numbers to be higher. For all the work I've put in, they should be higher. It made me a little sad.
I went to the pharmacy to pick up my meds.... they hand them to me in a giant grocery bag. yay.
Pouring meds for the week tonight, then bed. Someday I'll cheer up.
One Step Closer To Winning My Fight with CF - written Oct. 2, 2007
I have cystic fibrosis. I have CF-related diabetes. I have severe lung infections and am unable to digest my food correctly. I take my blood sugar and do my vest and chest PT and my nebulizers every day. Every day I take nearly 50 pills. This is the fight I wage every day, but it is not what I want to be doing.
I want to be fighting to help others with CF. My dad and I recently were able to get the pulmonary unit put back together at the hospital. We no longer will see a gen med team - we will see our pulmonary docs again. I was so happy I cried when I learned that I had made a difference at the hospital. My dad wrote a letter on my behalf to the president (at the time he was vice president) of the hospital, and a couple days ago my dad got a response email from Dr. Getto. Dr. Getto wants to thank us in person for pointing out what was wrong with the system.
I have accomplished one big thing - getting the hospital closer to treating us the way we should be cared for - but I want to do MORE. I have recently helped a media storm about CF get underway.
I want to change even more things at the hospital - I want to fight to get mid-stay PFTs done. Lung functions tests are so simple, it's dumb not to do them often to monitor progress. I want to change the pass policy. I think it is good to be able to go out on pass - to go sit by the lake on a sunny day for an hour or two would make me feel better. Going home for an hour relieves stress of the hospital.
When I'm sick I need to be in the hospital because I need the nursing care. I need the nurses to do my IVs because when I do them I don't get any rest. The "if you're well enough to go on pass you're well enough to do your own home IVs" policy is bullshit. I'm not healthy enough to do my own IVs, but I am healthy enough to go out and have lunch with a friend, or go see a play - or hell go to my brother's graduation. That needs to change, and it's my next goal. I will chip away at the hospital until they understand my disease and what I and my fellow CFers really need.
I want to set up our parent group that we have planned. I want to travel the country to help CF Centers set up support groups like the CF Connections group in Madison because that group changed my life.
I have no desire to finish my chemistry degree, because despite the fact that I love chemistry, I love working with and working for the CF community a thousand times better. I don't want to put my health at risk to earn a degree I don't want to use.
I want to finish my book and get it published and do the media circuit to help others with CF learn the priceless lessons I have learned.
And if you haven't seen it...
I'm working on a better one for next year's walk.
Reasons I Worry - written April 27, 2007 I was angry with a friend at the time - and my friend and I are now very close again :-) This is what happens when I get frustrated.
So, for those of you who know me, you probably know that I'd rather not fight with people, but at the same time I do speak my mind. I don't put up with bullshit, whether from my friends, my parents, or the doctors. If someone doesn't know the whole story I like to set things straight. If someone continuously causes me problems I'm most likely going to stop hanging out with/speaking to them.
I like to avoid drama in my life. My CF causes me enough grief, so I like the rest of my life to be fun and not complicated.
For kicks and giggles I thought I'd make a list of the things that are worrying me today:
1. One friend keeps making the bad guy and I'm tired of it. I'm pretty close to being done with her. (this is probably the smallest problem I'm worrying about, but I put it as number 1 because it's the biggest waste of my time, currently.)
2. My PICC line comes out tomorrow - that's the line that runs from my elbow to my heart through a vein. This is the biggest PICC i've ever had, so I'm nervous about it coming out.
3. My PFTs (lung function tests) are "high enough" to take my line out and stop this course of antibiotics, but they're still pretty low.
4. I have to accept the fact that my lung functions are dropping. There's only so much I can do to stop this, and it pisses me off.
5. The changes at the UW Hospital - this should get it's own sublist.
5a. The new "generalist" system at the hospital. There is no longer a pulmonary service, only pulmonary consults. You can ask me more about this if you're interested, but just know it's a bad, bad thing.
5b. "If you're well enough to go out on pass you're well enough to do your own home IVs" Yes. That's what I was told. Yes, I've done pretty well doing my own IVs, but when will I be too sick to go out on pass?
5c. When I am in the hospital they refuse to do lung function tests in the middle of a stay to make sure the meds are working. I get to worry whether or not they are for two weeks, and THEN find out. If they aren't I get another two weeks of meds, etc, etc.
5d. Two words: Lung Transplant.
Dr. Love left the hospital and there hasn't been a lung transplant since he left. The guys who are left don't have the skills. Sue (the nurse coordinator) is sending people to Chicago when they get sick enough to have a transplant.
5e-z.... I could go on for years about the hospital
6. When will I need a lung transplant?
7. By the time I need a transplant will I be able to have it here or will I have to move to Chicago???
8. How am I going to fit in my treatments today?
9. Who will move to Chicago with me to take care of me?
10. How can I make people understand what this is like???
...I may not have classes or exams anymore, but I still have a few things to worry about. Fuck those of you who are making my life harder.
That's all for now. Maybe I'll post some more old stuff later.