Friday, February 29, 2008

More from the Past

These are more Facebook notes I wrote. I often wrote when frustrated in the hospital or just frustrated in general. I realize this is a lot of writing I have done... but I feel it should all be in one place. My feelings about my CF should be in my Living with CF blog. Pay attention to the dates if you wish... some of them are almost 2 years old.

H-O-M-E HOME!!!
Well it's a long story why I'm home, but I may go into a little detail.

I wanted to go to a musical with my friends tonight, so I thought I could go out on pass and there would be no problem. My mom wanted to take me home for a couple hours, too. I asked for a pass and they said that they don't give passes in adult-land. If I'm well enough to go out on pass, I'm well enough to do my IV meds at home. Fucking unit clerk... her and her damn issues with me having a boyfriend... sorry the stick up your ass prevents your from being desirable... bitch.

I felt like I was being treated like a little kid, and I cried like a little kid. I couldn't believe what I was being told - and everyone else I've talked to has been SHOCKED that they wouldn't write me a pass.

There was also the issue of them not doing PFTs on me... fuck them.

I decided that I'm never going to be hospitalized again and all my IV meds will be done from home. The hospital has gone to hell and there's nothing good there but some of the nurses and most of the respiratory therapists.

I have this horrible illness that is awful to deal with in the first place. Then, I have to be in the hospital for treatment, making things worse. The only reason I wasn't going insane and wasn't throwing things at people was because of the people that cared enough to come keep me company. Then they harass me about it... and they make my life difficult by not listening to me or even letting me try and live a normal life, despite the fact that I'm in the hospital.

My goal in life is to not let my CF get in the way. Doing IVs at home is harder than doing them in the hospital because I don't get as much rest. In the hospital, if I'm sleeping the nurse just hangs the med and I continue to sleep... but at home I have to be up and alert to do my meds. Home IVs take my energy and prevent me from being active... but now that they won't let me out of the hospital to BE active (even though exercise is recommended in CF), I might as well be at home.

Also, a perk of being in the hospital is that I monitor my progress and do PFTs twice a week... in Adult land, it's not clinically necessary, so they only do them when you come in and when you leave... no checking in the middle, so I may as well be at home.

That hospital is criminally fucked up, and I've always trusted them with my care, but I can't anymore. Now that I'm an adult they're treating me like I'm a little kid...

What do you do when you're really sick and don't trust the doctors anymore???
*****
I was planning a "Carla's gone three months without being in the hospital" party.
Today I had clinic.
I did PFTs. They sucked.
Dr. doPico said I should do IVs.
I will be admitted for about 4 days.
I will come home and do my IVs at home.
I HATE doing my IVs at home. It's sooo much work, and I just don't want to.
I don't want to go to the hospital. This wasn't supposed to happen.
I was supposed to stay okay. I was supposed to be able to keep going.
I want to dance and party this weekend. I DON'T want to stay in the hospital. I don't want my parents to have to drop everything and help me do my IVs... FUCK FUCK FUCK.
I DON'T WANT TO DO HOME IVs... I HATE THEM. I guess the hospital is too full for people to do the IVs in the hospital.
I wanted things to keep going the same. I was so happy.
Now I have to adjust again and be happy despite being sick.
*****
I am an island. I've always wanted to live on an island but I never wanted to BE an island. CF made me an island. No matter what I always feel a little isolated. The only place I don't feel isolated is during group, but that's once every six weeks. Also, volunteering at the CF Foundation helps because we're all fighting the same thing, but not every one is fighting it in the same way.

CF has isolated me because we are not allowed to me other CF people in person due to contact precautions. Infections are transmitted easily between CF patients. I feel like this is the only disease like this. Cancer patients can hang out together, AIDS patients can chill and get coffee... hell most people with other illnesses can date within their "own kind." That's not how I wanted to word that, but it's the only way I can think of to say it. I know there are people who get together and ignore the contact precautions, but it's still there - it's taboo for CF patients to be together. Every time I talk about group with my mother I get criticized because we don't follow precautions as strictly as she would like. I should have never taken her to group with me. ::Sigh::

When I was young all I wanted was to find my CF friend. I wanted someone who really understood what this is like. I can describe it all I want, but no one really understands the emotional ups and downs and the physical ups and downs unless they actually have CF.

As I got older I created my own world where any guy I had a crush on automatically had CF. He, much like me, was hiding his CF and in my imaginary world we would fall in love and then we would find out that we both have CF and live happily ever after. I looked for signs that he had CF... any cough, pills or inhalers were sure signs of cystic fibrosis. I know better now. Now I just hope to find someone supportive enough.

I love my friends and family more than anyone knows. They help me through everything and I am so grateful for them, but deep down I still wish I could curl up with my imaginary CF boyfriend, only I wish he weren't imaginary. I guess he wouldn't even have to have CF, he would just have to completely understand what I'm going through... and now I've looped back again to say that the only way he could understand completely is to have CF, I guess.

I don't know how to explain it, but anytime I feel that someone might actually understand what this is like I tend to latch on to them and not let go. It's gotten me in trouble before, but that's too long of a story. I'm so afraid that even the most understanding people are going to get sick of dealing with the CF and leave. I pretty much get hysterical when I argue with a friend because I'm so scared of losing my friends. I need them.

Dating terrifies me because I'm sure the next thing I say is going to be the point when me being sick is just too much and he can't handle it anymore... arg. Why does everyone else seem to have a boat that allows them to flee my CF island? I want a boat.

Let me know if you find my boat... I'm itchin' to get off this island.
*****
These are the rules I wrote for myself while I was in the hospital. I also wrote them for Mom because she was having a hard time. I love you all. Here are my rules:

1. Follow advice from RENT. It is possibly the most important guide to life for people with an illness or for near to illness, or for anyone.

2. Happiness is the most important thing. All work should be because you are working for happiness. (Ex. I think of all the work Carly is doing for college to get into vet school, and I know working with animals is going to make her happy... Keep going, Carls!)

3. Life is too short to not be dizzy with happiness

4. Being silly is essential to happiness. There is no reason not to be silly.

5. Overwhelming feelings are to be avoided. Deep breaths and calming thoughts are better. (This is for Mom)

6. Everything can be accomplished in due time with patience. No need to panic.

7. Don't bother worrying about things you can't change.

8. Dance whenever possible.

9. Boogie through the pain.

10. Watch little kid TV every now and then - it keeps you young and fun. (Dad and I enjoy BooBahs and VeggieTales. We laugh until we cry. It's also good to listen to Raffi. He's very philosophical.)

11. Make fun of everything. You're taking life too seriously if you can't laugh about it.

12. Laugh at yourself. It keeps you grounded.

13. Polka in the kitchen until you laugh so hard you can't breathe anymore.

14. Eat cake. Or Pie. Dessert is a good thing.

15. Life is fun.

16. Live life without regret. You can't change the past so don't worry about it.

17. No Day But Today.

18. Be spontaneous.
*****

I feel like I have completely and totally failed at life. That sums up my current emotions. I don't know what to do.

I see friends graduating from college - I see friends with CF with careers and college degrees and I feel like I have failed myself. Why couldn't I complete college. Hell, why couldn't I complete one semester???

There are people just as sick as I am going to college - why was I a failure??? Did I not want to go to college badly enough? As I recall my entire life was spent trying to make sure I would get into Madison... my college lab notebook with the duplicate pages still makes me smile. I'm pretty sure I was smart enough. So what was wrong? I couldn't even finish one semester of Italian because I was so afraid of getting sick. I think that was my biggest issue. I am so afraid of getting sick I can't hang in through cold and flu season.

I know that when I had school work I didn't have enough energy to take care of myself, let alone cook or do laundry or basic cleaning. Hell, I can barely keep up with those things when I'm not in school. Fuck. My parents and brother came down this weekend and pretty much wiped me out. They did the cleaning and laundry and played catch-up, and I ended up exhausted. I didn't really do much - walked around sam's club, washed a sink, did my treatments, tried on clothes that no longer fit so we could get rid of the "sick" and "healthy" double wardrobe thing.... basically my family did all the work, and I had to take a 2 hour nap yesterday and a 3 hour nap today to catch up.

I feel so useless. I feel like a wasted life - I have no purpose here but to waste my parents' time and money. Why am I still here?

I don't know what to do, or how to feel, I think I should just go to bed.
*****

Today is my first day of clinic in the adult world. Dr. Green has been my doctor since I was three... so I'm incredibly nervous to turn over my care to Dr. doPico. I know he's competent and a nice guy, but I'm going to miss Dr. Green so much. I don't know what to do... I'm so nervous for clinic today. Maybe I'll call around and see if anyone is alive and willing to go with me.

I suppose for my sake of being an adult on my own I should go alone... but I don't want to. I don't know if I can face leaving pediatric pulmonary clinic by myself. It's not like I'm physically leaving clinic... it's just that I'm not going to peds anymore.

This is strange. I didn't feel like this when I left high school... I was overjoyed. I didn't feel like this when my parents dropped me off at college... I just smiled, made friends, and unpacked my stuff. I have always seen Dr. Green more than I've ever seen my own grandparents. This is a bigger deal than being away from family. I have put all my faith and trust in treating my cystic fibrosis in the hands of Dr. Green... and now I'm no longer seeing Dr. Green. He's taught me a lot... but I'm going to doubt anything any other doctor reccommends. how do I get over that???

This is probably one of the hardest days I've ever had. I don't know how I'm going to feel after clinic. I'm nervous because I don't know how adult clinic works. I'm just nervous for so many reasons.
****

40 of The Most Random Questions You Will Ever Fill Out

1) What side of the heart do you draw first?
right

2) Can you dive without plugging your nose?
Nope

3) What color is your razor?
blue... VENUS

4) What is your blood-type?
A neg. need to know that one!

5) Who would you want to be tied to for 24 hours?
Sarah Heffron b/c in 24 hours we could conquer and rule the world. :-)

6) What is a rumor someone has spread about you?
That I died. I hadn't died.

7) How do you feel about carrots?
Diet food. Nutritious.... both things I avoid, but I am not anti-carrot. I have some in the fridge at home.

8) How many chairs at the dining room table?
Four... but the table is also my kitchen/living room table.... it's the everything table. It is glass and pretty.

9) Which is the best Spice Girl?
Ginger.... and to Emma b4... I am ginger... you can't take Ginger.

10) Do you know what time it is?
7:19... I'm waiting for RT to get here so I can do my treatments then go to bed.

11) Do you know all the words to the Fresh Prince?
Well, the starting song, yeah.

12) What would you do if you were stuck in an elevator?
Dance

13) What's your favorite kind of gum?
I'm allergic to gum.

14) All's fair in love and war?
NO. you have to be nice.

15) Do you have a crush on anyone?
Yes :)

16) Do you know how to use some words correctly, but not know the meaning?
WTF, mate. this is a dumb question.

17) Do you like to sleep?
YES... specially when there's someone to cuddle

18) Do you know which US states don't use Daylight Savings?
Indiana... well, partly... and maybe Hawaii or Alaska?

19) Do you know the words to the song Total Eclipse of the Heart?
Duh. there aren't many songs I don't know the words to.

20) Do you want a bright yellow '06 mustang?
NOOOO I only drive seafoam green or maroon cars. Duh.

21) What's something you've always wanted to do?
Go to Italy, Spain and Morocco.

22) Do you have hairy legs?
yeah.... i'm in the hospital and the shower is tiny and hard to shave in.

23) What does "Semper Fidelis" stand for?
It doesn't "stand for" anything... it TRANSLATES to Latin for "Always Faithful." I hate incorrect word usage... I agree with Boo.

24) Would you rather swim in the ocean or a lake?
I love the ocean.... but won't swim in it.

25)Do you wear a lot of black?
I used to... but only for forensics b.c it made me look older and hot.... LOL

26) Describe your hair?
Red. Wavy. Curly. Loveable.

27) Do you have Entomophobia?
nope

28) Are you an adult?
Yup

30) Do you have a tan?
no... i'm anemic and fucking pale.

32) Do you enjoy spending time with your mother?
most the time.

33) Are you a sugar freak?
I luuuuuuuuuuuuv sugar.

34) Do you like orange juice?
Allergic.

35) What sign are you?
Leo

36) Where do you wish you were right now?
i wish I were home.

37) Who did you copy this from?
Emma Boo

38) How do you know them?
Friend from High School.

39) Have you kissed anyone in the past week?
um.. i'm in the hospital...

40) What are your plans for the weekend?
BE OUT OF THE HOSPITAL!!!!
*****
The Girl in the Bubble.
November 10, 2006

Recently I have been watching season three of the L word. For those that haven't seen it, one of the characters, Dana, gets breast cancer and her friends are amazing. I think cancer would be better than CF. I'd rather have breast cancer. People have beat breast cancer. No one has ever beat CF. Some people have lived fairly long lives if they have the mutated form, but no one with the ^F508 common type lives to astonishing lengths without a lung transplant. And then, after transplant a high percentage of people get.... you guessed it... cancer.

This last hospitalization was probably the last PICC line for me. I'd be very lucky to get another in my arm - it probably won't thread because there's too much scar tissue. This means I'll have to have surgery to put a port in. A port will make a liittle scar above my breast. Under the scar will be a little balloon of fluid with a tube attached that threads into a vein and then into my heart. Um.. yeah. It is permanent and can last up to 5 years before it stops working and they have to surgically remove it and put another one in - making another scar.

Carly made me promise her i'd never get a port, and I did. I knew I could never keep the promise, I just did it to humor her. Sorry, Carls. There are just things I can't promise. I can't promise I wont get sicker. I can't promise I'll ever be able to live by myself again. I can't promise I won't end up on the transplant list. I can't promise I won't die.

That's why I wish I had cancer instead. When you have cancer the whole world rallies around you to support you through your cancer. I don't think CF is any easier than cancer, it just lasts longer. I wish my friends would rally like Dana's friends in the L word. Especially when I'm in the hospital or any time I'm dealing with CF, which is wait... all the time.

I'm living in a bubble no one can get through. Maybe they try, but eventually they give up. I stand alone in my bubble watching the rest of the world live their lives. I want to leave my bubble and join the world.
*****

I miss the days when I didn't have to think about conserving my energy. I never will take for granted anything I am able to do. I have to celebrate every small thing I accomplish and not worry about the abilities I am losing. Today I went to class and prepared for tomorrow's class. Today I worked a little on the purse I am making. Today I did the dishes. Today I took a shower.

I am sick again. I didn't think it would be this soon. I had no idea the downward spiral happens so quickkly. I guess I have heard that CFers go from pretty healthy to deathly ill in just a matter of months. I hope I am not headed there now. I need a few more years. I am not ready to be sick all the time. I don't have the emotional strength to accept I will not get better. I only have the strength to keep fighting. I just need a few more years. Please.

But I am sick. I hope my PFTs are better this week, but I can feel in my lungs things aren't right. Plus, I have a nasty sinus infection less than a month post sinus surgery.

I hope I don't lose more friends as I get sicker. I've already lost a couple who didn't want to deal with me getting sicker. I think that is probably the worst feeling in the world. Someone cares enough for you to not want to see you get sicker, so they altogether leave. We could have been friends if the disease I was born with weren't gradually killing me. Too bad that's what CF does.

I want more than anything to keep my wonderful friends. I am so afraid that because I can't do as much anymore I'm going to gradually drift apart. I know how busy people are with their classes - hell I tried that three semesters. I just want to be invited, even if I can't participate.

What's going to happen to me?

I currently have zero energy to spare. This first day of class wore me out. Darin being here this weekend wore me out. I nearly collapsed on State street I was so weak. I have had to pull out of all my volunteer work for the CF foundation because it was taking too much energy. I have been able to play a little DDR - the hope is to rebuild muscle and general stamina, but I don't know if it will work. I have no idea if I am ever going to be able to dance again like I used to. OMG I can't even think about that; it's too depressing.

I don't think I'm going to have enough energy for the football games this year. I think I'm going to sell all my tickets. I need to take care of my health instead of waiting until 3rd quarter to Jump Around. Start bidding on the fabulous underclassmen tickets I have. Seriously, let me know which games you want.
*****

Well, after I wrote that note, I ended up in the hospital for five weeks. Don't ask about the number of visitors I had, because I can count them on one hand. Don't ask about how many doctors I screamed at because I lost count. Don't ask how many times I thought I was going to die because of the meds they gave me, because once again, I lost count.

I still got to go to class and I kept up with Italian pretty well, considering. What a nightmare.

I only came home because I was getting sicker in the hospital (yeah... lung function tests worse than when I was admitted). We demanded I come home.

Now that I'm home I'm not any better, I just have more treatments to do. I still have my PICC so I have to flush that daily and wrap my arm to shower. I now also have to check my blood suigar before every meal. Since I've been home my sugars have been fairly normal, but who knows how long they're going to stay that way.

On top of all this, my parents have to take turns living with me so that things like meals and dishes happen. I don't have the energy to take care of myself, plus there's no one else to do my treatments.

Eventually, if I get a little better (to the point where I could handle taking care of myself thursday through Sunday) my mom will only live with me to take me to class and then she'll go home on the weekends. I don't think I'll ever have the energy to drive to and from class again.

I'm not taking any spring classes, which is sad. I'd like to take Italian 203, but the winter is just too hard on my lungs.

I'm thinking of buying a wheel chair to keep in my car. It will be for outtings with friends/family where it is just too hard and too far to walk. Examples: the mall, state street, anything with more than one block of walking.

I'm here. My lungs may never be what they were. I'm not so scared anymore. I know I have the strength to do this. Bring it on.

What I'd really love to avoid is drama - holy fricken crap. I just need support without drama - how hard is that, really?
*****

And that's it... those are all the relevant notes I wrote on Fackebook

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