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

Thursday, February 28, 2008

Today

Today was a great day!

I was able to do dishes, clean the sink, get groceries, make a little something, and get some other things done!!! I feel amazing and wonderful and best of all:

big ugly IS GONE!!!! GONE!!! They came and took big ugly away. No more O2 for this gal!!!

Other things that are going on:
I'm planning a couple big projects, that I LOVE!!!

I'm still having nightmares. They come and go - a couple nights ago i had one - it wasn't horrible like they have been in the past, but it was still a nightmare.

I needed to do something for myself to possibly help feel strong and powerful - more strong and powerful than him. I found the letter I wrote to the school principal and it brought up all sorts of things. I read most of it and realized that in no way does it show how terrified or terrorized I was. It is simple language stating what happened, and doesn't explain at all how scary it all was - it all is.

I'm sure at the time I wrote the letter I couldn't express feelings without flashing back. I know while writing it I had flashbacks and it took me two weeks to write. Just skimming it over today made me close to a panic attack. I don't really remember writing it, and there are things in it that I had blocked out (again).

I think I need to take my bedtime meds so I will calm down.

But this is real. It's what I deal with - and the things in the letter are the things that happened to me, minus the emotions I felt. And this is how I became the jumpy person I am.

Whatever Happened To Carla

I found this while going through things on my computer. I still have nightmares because of what happened to me, and I think it's going to help me to post this letter, even if no one reads it. It's extremely long, but it's what happened to me.

Dear Mr. Greiger:

I am writing this letter to file my complaints of sexual harassment against Mr. Howard and to expose what he did to me when I was at the high school. When I was still in high school I tried twice to express my concern, but was never taken seriously. Because I wasn’t taken seriously and I was afraid my grades would be affected if I went further, I dropped the issue and took matters into my own hands. Now, almost two years after my graduation I have decided to come forward because I hate thinking other girls are going through what I went through because of Mr. Howard.


I would be willing to talk to anyone about this, but I feel for my own safety I should not be at the high school. I know there are certain identifying details, but I would like to remain anonymous at least for the next two weeks. I am moving, and after the first week of April I would be okay with my name coming out if necessary.


The following is a chronological summary of events – it is not completely inclusive, merely a summary of what I remember:

Freshman year

Fall 2000: I got Mr. Howard for advisement and U.S. History.

I get a strange feeling when I’m around Mr. Howard, so I avoid advisement. I find a club to attend on every club day, and on other days I find excuses not to go to advisement. I never get a pink attendance slip, but Mr. Howard threatens me with a DR if I don’t come to advisement more often.


End of first quarter, fall 2000: My parents and I met with Mr. Howard for my parent/teacher conference. Howard struts in and says I am doing well academically, but should be more athletic. He suggests soccer, and my mother stands up and firmly and loudly says, “Don’t you dare tell me how to raise my daughter. She has cystic fibrosis and physically can’t be athletic. Don’t tell me what my daughter needs.”

Later in the day Mr. Howard comes up to me and says he had no idea about my lung problems. I become nervous because most people don’t know and I say, “Yeah, most people don’t know.”

About one week after the parent/teacher conference, Howard is lecturing during class and randomly brings up cystic fibrosis. He makes a point of looking at me before mentioning CF again and moving on. I panic because no one in my class knows and I don’t want them to find out. Later in the day, a friend who knew about my CF came up to me and said that Howard had talked to her class about me and my CF. I know this happened at least two more times, including once my sophomore year.

Beginning of second semester, January 2001: I don’t go to advisement because I went to a club meeting, and Howard pulls me out of the cafeteria at lunch and walks me down the hall, up the stairs, and to the deserted teachers’ lounge to tell me my class rank. I thought it was strange he didn’t even need to look at the list once we got to the teachers’ lounge. I was eleventh.


February 2001: I need to switch history hours to switch my Spanish class, and when I go to Howard to ask for permission to switch from his 3rd hour to his 4th hour U.S. History class, he stares at me for several seconds before saying, “Sure, anything for you, Carla.”


I took advantage of my opportunity to switch classes and actually skipped class to discuss it with my guidance counselor so I wouldn’t have to go to history.


In my new history class Howard puts me where there is an empty desk next to me and one in front of me. He sits on these desks to lecture and often sits next to me during tests. He also made me the attendance taker in both my new class and in advisement. Even though it made me uncomfortable, I took attendance because I always did what my teachers asked me to do.


One day I went to staple and turn in my test, and Howard was sitting at the front table where we turned in the tests. I stapled my test and went to put it on the pile. He took hold of the other end and wouldn’t let go. He looked me in the eye and said, “When I get married, I want to have a daughter… just… like… you.” I dropped my test and went back to my desk.


March 2001: In my 8th hour geometry class my seating assignment for March is closest to the door. Howard comes in everyday to write Pi=3 on the board just to annoy my geometry teacher, Mrs. Castner. Everyday as he leaves, Howard winks at me. After about a week and ½ Mrs. Castner asks if I would like a different seating assignment, and I said yes. I always viewed my 8th hour geometry class as a safe place away from Mr. Howard, especially after Mrs. Castner changed my seat. Several days later, Mrs. Castner had a family emergency and Mr. Howard volunteered to substitute. I walked into my 8th hour class expecting my safe environment, and find Howard sitting at Mrs. Castner’s desk.


May 2001: Howard assigns a letter writing project in advisement. Some of my friends are against it, and I rolled my eyes at the idea of homework for advisement. During a history quiz, Howard calls me out into the hall. He stands too close – less than a foot away – and corners me against a locker. He breathes on me with his coffee breath for awhile before telling me why I’m out in the hall. He tells me that I am a role model and should influence my friends to go along with his idea.


After that episode, I have my first nightmare. I dreamt that I had gotten Mr. Howard for sophomore history. My nightmares became recurring, always him chasing me or trapping me in his class room. Not until spring of my freshman year in college would my nightmares be diagnosed as Post Traumatic Stress Disorder caused by the trauma of my history teacher.


After my first nightmare, I go to guidance to make sure I didn’t get Howard for sophomore history. I told my counselor how uncomfortable Mr. Howard made me feel, and that I thought some of his actions towards me were inappropriate and I didn’t want to have him as a teacher again. I expressed my complaints to Ms. Coddington, who brushed them off, but told me that my request to not have Howard again as a teacher would be taken seriously. I sat with her as we changed my schedule and I made sure I had a different teacher for both ancient and modern civilizations. When I got my schedule at registration for sophomore year, it had me in Howard’s ancient civilizations class. I was so upset I collapsed on the floor sobbing. I went to guidance to try and fix the mistake, but was told that all the other classes were full.


Sophomore year

First day of school, 2001: I walked into class and Mr. Howard put his arm around me and asked about my parents. I reminded him that my parents didn’t like him, and he asked how my lungs were doing, and started to walk away. He turned and said, “Say hi to your mom and dad.”


My assigned seat was in the back corner with an empty desk directly next to me and directly behind me. Mr. Howard lectured mostly from those desks, and during tests would always sit behind me and breathe on me. Once, he even started flipping through my day planner, which I had placed on the desk behind me so it would be out of my way. I turned around, gave him a funny look, and took my planner back.


From the first day of sophomore year I was Mr. Howard’s designated helper. I took attendance, recorded quiz grades in the grade book, and marked participation points on the seating chart whenever someone spoke. I remember one instance where Howard insisted that I should sit at his desk to record grades in his grade book, but I insisted on recording them at my desk.


One day I came into class and sat at my desk. My good friend Dylan sat caddy-corner in front of me, and we were talking. Howard brought a newspaper over, moved my books from my desk to the desk behind me, and spread the newspaper out on my desk. He put one arm on either side of me and leaned over me to show me which stocks were his and then asked me to record the daily changes. I told him, “I am not your secretary and I’d like my books back.”


At one point during the semester Mr. Howard had changed the posters in the room, and the one that was behind my desk partially fell down. Howard was lecturing, and asked me to fix it because it was distracting him. While standing on my tiptoes the top corner was barely in my reach, but I fixed the poster. The next day the same corner had fallen, and he asked me to fix all the posters in the room. The next day the same corner on the poster behind my desk had fallen, again. For several more days the same corner fell, and each day I was asked to fix it. The last day I fixed it I was standing on tiptoe and not really listening carefully to the lecture, but as I turned around I heard Mr. Howard say, “Marriage and then children, right Carla?” I was in too much shock and confusion to say anything. The next day Howard asked me again to fix the poster and I asked my friend Dylan to fix it. It never fell again.


By my sophomore year I had learned that I could get by with doing very little work in Mr. Howard’s class. Whatever I did I was going to get an A or an A+. There were tests I completely made the essays up, and I got extra credit points. On one he wrote, “Extra points just because you truly make reading your work rewardable.” On one test I wrote about how I didn’t study because I got the day of the test mixed up, and I got full credit and he wrote, “Good thing you are a smart puppy.”


During one unit Mr. Howard showed the class the movie Gladiator, and turned all the lights off to show the movie. The room was completely dark, and he would wander around and then sit behind me. I knew he was there because I could hear and feel him breathing, but I never knew exactly where he was.


I became very frightened not only to go to history class, but also study hall. I took study in the cafeteria until Mr. Howard started regularly coming to talk to Mr. Belfer. He would wave, wink or occasionally say something. I was uncomfortable so I started going to the IMC for study hall. I was content there until Mr. Howard started coming to work in the teachers’ area of the IMC. He would walk by and wink or brush against me. I again was scared so I went to the band room for study hall. I felt comfortable there until one day Mr. Howard came to talk to Mr. O’Keefe. I knew I was being stalked, so I asked Mrs. Ketter if I could spend my study hall in the choir room even though I wasn’t in choir. She agreed, and I finally had a safe place to take my study hall.


End of first quarter, 2001: Mr. Howard gave me an A- for first quarter. I was okay with that because I knew I probably hadn’t done that well in his class. One day I was walking with a couple friends during passing time, and Mr. Howard stopped me outside of room 60. He pulled me aside and said, “I woke up dreaming about you at 3am and decided you deserve an A instead of an A-.” I said okay, ducked around him, and walked away as quickly as I could.


Junior year

I didn’t have Mr. Howard as a teacher junior year, but I ran into him in the hallways almost daily. I changed my morning routine several times to avoid him, but always ended up seeing him. I usually ran the other way if I saw him in a hallway, but there was one instance I couldn’t avoid him.


A classmate and I had forgotten our textbooks, and our teacher sent us to our lockers to get them. My book was in my friend’s locker, and I was standing opening the locker. I did the combination wrong the first time, swore under my breath and started to try again when I felt a knot in my stomach and saw a hand on either side of my head. I knew who had me trapped against the locker. As I started to turn to defend myself Mr. Howard whispered in my ear, “Not having much luck today… with your locker?” I screamed, and my classmate, Peter, turned and said, “What the hell, Carla?” Mr. Howard walked away. Peter offered me a mint and we went back to class.


At the end of my junior year I again returned to guidance to request never to have Howard as a teacher again. Ms. Coddington assured me she would do everything she could, but when I received my schedule senior year I had him both semesters. I went to try and fix this, but again I was stuck. I needed the credit to graduate, and because of the AP classes I was taking the only hour I could fit history in was the hour Mr. Howard taught.


Senior year

First semester senior year I had Mr. Howard for modern civilizations. It is a sophomore class, so my best friend, another friend and I were the only seniors. Since I knew I was stuck I decided I had to be strong and angry so he wouldn’t control me.


First day of school senior year: I bet my friend that my assigned seat would be front and center, and I was correct. Everyone else was in alphabetical order, except me. He stuck me front and center. Since I was next to my best friend I figured I could handle it, and I’m sure that’s what he figured I would do.


The first two weeks of modern civilizations, all we did was watch videos. I rolled my eyes about the fifth day of video watching because I thought he wasn’t teaching. I felt that if we discussed the videos it might be worth watching them, but we just watched them. After he saw me roll my eyes he would say things like, “Although Carla doesn’t thing we should, we’re going to watch a video today.” He even went as far as to ask my permission on every class activity before we started class. It made me angry because all I did was roll my eyes once, so I became belligerent and uncooperative. He then would wink at me to upset me even more.


I stopped bringing my book to class because I didn’t have time to go to my locker between physics and history, and I didn’t have the physical strength to carry all my books. My lungs weren’t doing well because of my cystic fibrosis, and I wasn’t able to carry all my books or run all over the school between classes. Mr. Howard chose this as his new way to antagonize me during class. He would criticize me and point me out to the rest of the class even after I told him why I wasn’t bringing my book to class. To make a point, one day I did go to my locker during passing time to get my book. I came five minutes late to class because I physically couldn’t climb the stairs any faster, and he antagonized me in front of the class for being late. I said, “Well, that’s how long it took me to get my book and carry it up the stairs.”


He continued to harass me about my book and my opinions on class activities until November 25th, 2003, when I snapped. I announced to the class, “Everyone, notice where you’re sitting. Think about alphabetical order, and then think what my last name starts with.” One student said, “Hey, W doesn’t come after B.” Mr. Howard became angry and offered a seat at the side table if I was unhappy with my assigned seat. I said, “A seat right next to your desk? No thanks, I’ll stick right here.”


My best friend at the time was in my class and became friends with him. She skipped class to spend his prep hour with him and would visit him at lunch and after school. This was upsetting enough, but then I learned they would talk about me. I became even more angry.


Right before first semester exams I went to guidance to figure out a way out of his class for second semester, and there was no way. I was stuck. I decided to take control. I had been terrorized long enough by Mr. Howard and I knew I had to take charge. I marched to Mr. Howard’s room and confronted him. It was the only time I went to his room by myself, but I knew what I had to do. I told him I didn’t want him to speak to me, look at me, or come anywhere near me, and I was going to get the grade I wanted or I was going to go to the administration. He had given me an A both quarters in modern civilizations, but after my confrontation with him, I received an A+ on the exam and an A+ for the semester. He also gave me straight A+s for all of second semester.


Second semester was sociology, a class of juniors and seniors. I had another friend in the class who had always complained about things he had done to her. He put this friend front center and me in the back corner with an empty desk behind. My friend and I would point out the out of line comments he made.


February 13th, 2004: My best friend tells me Howard told her he wants me out of his class. I feel it is completely inappropriate for a teacher to talk about a student to another student, and I go to guidance. I tell Ms. Coddington why I want out of his class and that he has been sexually harassing me. She says he’s too nice and I must be misreading things. She doesn’t believe me, and I have no idea what to do, except show Howard I have power. I act mean and powerful and eventually he becomes more cautious with what he says.


Before he actually becomes more aware of what he says, he criticizes me because I don’t think he’s politically correct, and he returns to asking my permission before talking about any subject. One day he was lecturing, and asked my permission to talk about something. I didn’t say anything, and he starts talking. He then turns and winks at me. I became so angry I tightened my grip on my pen, and it broke in half, sending the top half flying towards his head. He never asked my permission again.


After that he would try and talk to me or try to sit behind me and I would either not answer or move. I did everything I could to get him to leave me alone.


Post Graduation

Shortly before I left for college, I was hanging out with the friend who had befriended Mr. Howard, and her phone rang. She didn’t answer it, but I saw on the display that it was him calling.


My freshman year of college his wedding announcement ran in the paper. The date was set for my birthday. I learned later that he chose the date.


My younger brother was in Howard’s modern civilizations class spring 2005, and my former best friend was visiting him often. One day Howard told the class about his first week of teaching at the high school. He said he had two girls in his class, Carla and Emma, and they made teaching difficult and made him very nervous. My brother told me what he told the class, and I let him know it was a lie. Emma didn’t move to Cedarburg until November of that year, and I wasn’t in her class until the end of February when my schedule changed. Even then, she and I weren’t really friends, and we didn’t sit in the front row. It was a total lie.


Spring semester 2005 I was in Madison going to school and recovering from surgeries in November that almost killed me. I was in therapy for PTSD, and one day was walking back from therapy when Mr. Howard drove past and waved at me. The next week I told my therapist I had seen him, and she said that if I ever saw him on campus again I needed to call the police. She asked why I didn’t get a restraining order when I was in high school, and I told her I was afraid going to the administration would make things worse and it could have affected my grades and GPA. I was too scared to say anything, especially after guidance told me I was mistaken.


I am willing to discuss what happened to me, and I hope by finally coming forward I can prevent some other girl from having to go through the same torment I went through.


Thank you for your time.

Sincerely,

Carla A.

CHS Class of 2004

big ugly

big ugly is LEAVING!!! I don't know when yet, but I am off the O2 for almost two weeks now, and clinic called today to say they would be arranging to get the concentrator out of my house!!!
big ugly is LEAVING!!!

My Favorite Things

I'm feeling really good today, and I want to write about my favorite things.

*Clean sheets. I love the way they feel against my skin and make my bed so much more snuggly. I feel I sleep so much better when my bed is newly made.

*Hearing my favorite song on the radio. I love driving and singing along - turning the music way up. I love to drive with the sunroof open and the sun shining on me!

*Watching my favorite movies.

*Dancing. Any dancing. Someday I want to have enough lungs to polka.

*Strawberry Twizzlers. Food in general. Amazing pizza, pasta, shrimp, fish, potatoes, cheese, anything yummy. I love pie. Cherry, Blueberry, Peach, Apple, Banana Cream. I love white cake with white frosting with vanilla ice cream. Eating is even more amazing when it's with great conversation!

*Spring, Summer and Fall.

*The first snowfall (after that, I would like it to be spring again). I glitters and covers everything and makes it magical.

*Being with my favorite people.

*Getting out of the hospitals or being healthy enough to stop home IVs. Pulling that needle out feels so good. When I went to do my last dose of medicine last time I laid out the meds, the saline and the heparine, when I realized I needed the special heparine because I needed to pull the needle. I started jumping up and down yelling "Yay special heparine! Yay special heparine." It was just so exciting!!!

*The ocean. I love seafoam and the waves. I love hearing them crash and watching them crash. I love the smell, and the way the sea air makes my lungs feel!

*Travel. I love seeing new things and hearing new sounds and eating new food. I can't wait to go back to Germany and see ITALY!!! I love Italian and learning the lovely language. Hopefully I will get to use what little Italian I know!

*I love being silly. I love prancing and doing random things just because I can!!!

Sunday, February 24, 2008

Proud

I'm proud of me. I did something that I've wanted to for awhile. Maybe I'm back where I need to be - or at least closer to it - emotionally. Physically I'm doing great too. So yay for me.

Photos

I thought I'd add some photos.


My (parents') dog Snowball. I love him.

Me at Christmas and my Italy book - and now the trip is happening!!! I'm so excited I can't believe it!!!
Me in the hospital - it was late and I was REALLY bored!!!
Me dancing - not a clear photo, but I like the blurry effect.
We have gotten a ton of snow this season, and we're slated to get more tomorrow. ICK.


I like photos. I take a ton of photos because I love memories. I love keeping memories alive. Photos are great.

Saturday, February 23, 2008

Funerals

Friday I went to my Great Aunt Emma's funeral. My aunt and uncle were there - I don't see them very often. Actually, I met a great number of relatives on my mom's side that I had never known. That was kind of fun.

Aunt Emma was a ballroom dancer - like me. She danced for years and years and now I know she's up in heaven dancing and looking down on me. She's my Ballroom Dance Angel. Last night when I went to UWMBDA I wore a rose on my lapel in honor of my Angel - Aunt Emma.

Funerals always make me think of my funeral. I came home yesterday and planned mine - at least more than I have in the past. I printed off worksheets and planning guides. And now I wonder if I went a little overboard.

Today I was able to dance for 3.5 hours STRAIGHT. It was so wonderful!!! My feet gave out before my lungs. I have no idea how that happened, but it was wonderful. All I can hope for is another week of feeling so great, and then another week after that. And someday maybe I'll be hoping for another week where I can go and watch, but maybe the dancing will help me enough to keep me healthier longer.

The big news today (besides my dancing success) was that our plane tickets for Italy are BOOKED!!! My Dad, Darin and myself are going to Germany and Italy in JUNE!!! I'm so excited I could cry - my dream of seeing Italy is coming true!!! It's coming TRUE!!!

Tuesday, February 19, 2008

Questionaire....

I got this from a girl who is doing a CF survey for her thesis. She's done with her thesis but I think I'll fill it out anyways. I will fill it out tomorrow/Thursday/whenever I get to it.

(Can you believe I got to it today, Wednesday!?!?! I sure can't!)

1) What do you know about Cystic Fibrosis?

Everything. Go ahead, test me. In a head-to-head match with my doctors, I could win. I know my CF stuff.

2) Do you think your doctors have helped you deal with Cystic Fibrosis? How have they helped?

Helped me deal with it? Probably not. If anyone has, it's Dr. Green, but only by keeping a positive attitude about the outlook on CF. I don't think a CF doctor can help a patient "deal" with the CF.

3) What do you think has gotten most in the way of your doing better?

Doctors. Yeah, seriously.

4) Are there things the doctors could have done to improve your care?

Listened to me. Dr. Green and my dad have been the only doctors that truly listened to me.

5) How do you feel about the way the doctors treat you?

They don't listen. Often I am a number, not a person. I am a medical subject, not a person.

6) Do you ever feel people treat you differently because of your condition?

Not since middle or high school. I think the majority of people have been wonderful to me. I love people.

7) How well do you think that you are able to take care of yourself?

Very well. And when I'm sick my parents help me.

8) What worries you the most about cystic fibrosis?

Losing the ability to do the things I love.

9) How does your cystic fibrosis affect you?

I have emotional issues because of it. I'm in therapy. I've had depression and anxiety and it's hard to know what was caused by being stalked and what was caused by my CF.

10) What do you hope will happen in your future?

I hope to live to about 30 before needing a transplant, and in that time I hope to raise awareness and money for CF and also help support groups get off the ground. I also want to get my book published.



These are more personal questions that were on the survey - but I'll answer the ones I find fitting.

What has been on your mind today?

Getting off the IVs!!! And all the little things that need to get done like dishes and phone calls and emails.

What do you enjoy doing?

Dancing, Watching movies, Traveling, Hanging out with friends, Working for CF, etc.

What really annoys you?

Doctors who don't listen.

How do you get along with different family members (mother/father/brother/sister)?

Mother: She takes care of me, and sometimes we don't get along.

Father: We always get along. He's the best.

Brother: We fought when we were young, but now we get along for the most part. He's a good kid.

What are your responsibilities at home?

I live by myself. I take care of everything and my CF.

Tell me about a friend/boyfriend/girlfriend.

My best friend since kindergarten has been Sarah. She's the best best friend a girl could ask for. I love her.

What would you change about the environment in which you live?

I would be married and I would have someone to take out the trash for me (not the only reason I'd want to be married btw.)

What is your school/work like?

I don't have one anymore.

Is there anything you’re looking forward to that’s going to happen in the next couple of weeks?

Hopefully planning a trip to Italy, studying Italian, and dancing :-)Oh! And going to see Avenue Q!!!!

What do you worry about?
Everything and nothing.

Slowing Down

I need to slow down...

...in my dancing. I tend to get ahead and am so excited I like to skip things. I don't usually do anything slowly, so having to be patient in dancing is going to be troublesome.

Also - I will not lead. I will not lead. I will not lead. I will not lead.
I have a problem leading. I'm supposed to be following, but I like to lead to get things going where they should.

I have always been a leader - never a follower haha.

This is short because I have to go to dance practice, but tomorrow should be my last day of IVs. YAY!!! We'll see how clinic goes.

Sunday, February 17, 2008

Livin' a Little, Learnin' a Little

I've had an amazing weekend. Just amazing :-)

Someday last week I learned my friend Scarlett who has CF is working on getting LISTED! I hope her wait for the new lungs is not too long and that the surgery goes well!!!

Friday I learned a secret. A special secret that made me very happy. I can't tell, but someday I will, and you'll see why it made me so happy. I'm now working on secret things because of this secret. :-)

Friday night I went dancing - which is always amazing. I cried at one point watching everyone dancing. It was overwhelming because I never know how long I'm going to be able to dance. Honestly, I was jealous of all the healthy people on the dance floor. I did well for me. I really love my dancing friends. They are the most wonderful people. Even when I don't feel like dancing they make going to UWMBDA so worth it :-)

Late Friday night I got home and my parents were at my place - my parents and SNOWBALL their dog. I love Snowball. He's amazing. haha. I talked with them for awhile and then went to bed.

Saturday morning I got up early and went to the train show with my dad. I ran into a kid I went to high school with (and elementary and middle school) but was never friends with. AWKWARD. But the rest of the show was fun! Dad bought track and a couple trains. I am proud to say that I know the difference in the scales - it's really dorky, but I've learned over the years from going to train shows with Dad. I had a ton of fun. I watched the little kids - and this brings me to an issue I'm having.

I want kids - or a kid. I know I'm probably never going to have kids of my own, and that just kills me. I know I probably can't get pregnant (and if I can, I really, really shouldn't). And I probably can't adopt, either. Even if I ever get married (a thing I've pretty much almost given up on, judging from how my other relationships have gone), no judge likes to give a baby to a dying mother. A dying father isn't so bad, but a dying mother is bad. And they don't let adoption happen period post-transplant. *le sigh* I love little kids, and I know I'm never going to be an aunt either - unless my imaginary husband (wait... "for-ever fiancé") has siblings with children. I know my brother will never have children. The thought makes me laugh. I want my own kids.

Saturday afternoon I had dance practice - fun! We foxtroted for two hours. It was dance practice :-)

Saturday after practice, Mom and I tried to change my port needle. I have an Infuse-a-port (portacath) and the needle needed to be changed. I tried to get it myself (as I had tired and succeeded for the first time the weekend before), but missed twice. Then Mom tried and she missed and then was scared of hurting me anymore (it really does hurt, but it's no huge deal). So we had to go to the ER. Right. Two hour wait in the ER for the intravenous team to come down b/c none of the nurses in the ER wanted to try. *le sigh*. The IV team nurse was AMAZING. I know I use that word a lot, but she was amazing. She taught me how to do it - FINALLY - I've only been asking them for 8 months to get someone to teach me how. You have to twist the needle as you push it in so it doesn't slide off the top of the port. Now I know how - and she basically emptied the supply room into a huge bag for me. She was great!!!

Not that spending hours in the ER was fun, but the outcome was good. And last night, I slept with out my O2!!!!! NO O2!!! NONE!!!! I feel amazing (there's that word again...) and I just want to jump around and play with little kids I feel so great!!!

That was my weekend. Today I slept about 16 hours and did IVs and ate during the other hours.

I need to go see if I have any acceptable yarn... I should, I have a ton.

Friday, February 15, 2008

Great Strides

Hello all!

Today I am officially kicking off my Great Strides fundraising!!! I love this time of year - I love the Great Strides walk. I got my facebook event started and my group updated and invited people. Next step is to invite walkers from the CF site and invite donors. LOVE IT.

I'm working on writing my letter for this year. I have used the CFF general letter in the past, but this year I want to write my own letter. I may make a third montage, too, because I love it.

My goal is to get everyone I know to donate at least $5 to make my goal of $5,000 this year. (That's the team goal).

That's all for now - later I will post fundraising ideas.
<3 Carla

Thursday, February 14, 2008

IVs for Valentines

I have a new doctor. He reminds me of my pediatric doctor. And that makes me happy.

On Tuesday my lung functions were not quite high enough, so I have to stay on the IVs for another week. I also am staying on the O2 at night for another week. I was hoping to be off of it by now, but I guess it makes sense that I stay on it while I stay on the IVs.

Another week of IVs. This is five weeks of IVs in two months. Five out of the first eight weeks of 2008 I will have been on IV antibiotics. At least I'm at home and not spending 5 out of 8 weeks in the hospital.

I tried to convince Dr. Cornwell that I could do Vancomycin at home when I need to - he laughed. I laughed. And then I said, "No, I'm serious."

Today is Valentines Day. I slept most of the day, but this evening I watched "No Reservations," because I'm a huge Abigail Breslin fan - she's adorable. "Little Miss Sunshine" is possibly my favorite move ever - well at least one of the top. Anyways, I enjoyed the movie - although it made me cry. I also rented "Love Story" and "Kramer vs. Kramer" - but I wanted something lighter than "Love Story." I know she dies in the end, and that would make me sad. Movies where the girlfriend/wife/young mother die are hardest on me. My all-time favorite movie is "Steel Magnolias" - but I always sob hysterically. Right from the beginning because I have it memorized. But it's a fabulous movie.

I got a delivery today - and at first I was really excited when I realized it was for me... a big box on Valentines Day, just for me??? What could it be? Who could it be from??? And then I realized it was my IV medication for the next week. That was more than slightly disappointing, especially when I opened it and realized they didn't send me enough red caps to last through the week.

I got IVs for Valentines Day.

Tuesday, February 12, 2008

This Is My Life

I'm sitting at my desk, watching episodes of Law and Order SVU on the computer and doing my IVs. I just got home from dance practice - which was amazing! - I didn't feel out of breath or have to rest once in the two hours. I feel so much stronger!

And this is my life. Dancing and IVs. Dancing and meds. Dancing and naps. Dancing and showers. Occasionally, it's Dancing and Dancing, or Dancing and Fun with Friends, but usually there are meds in there somewhere. It's what I live every day.

I heard a woman at the hospital talking on a cell phone today about how, if she entered a study she would have to do "something medical" four out of seven days. And she said, "How can I live my life like that?" And it almost hurt, because my life is medical seven out of seven days. Every day I have my nurse come and do my chest pt (the link is more than anyone ever wanted to know about chest pt... but if you want to learn...). Everyday I take my 50ish pills. I do my nebulizers -hypertonic saline - and I do my vest. I rinse my nose about once a week, I pour my meds once a week and order refills from the pharmacy. And there are other things I know I'm forgetting. This is just how I live. This is my life.

This is my life, and I'm going to live it despite my daily "somethings medical."

I decided that I don't need my mom to come back down to help me go to clinic. My parents will now come down this weekend because my dad wants to go to the train show. He loves trains. I'm so excited to go with him because I love watching my dad do things he loves. It's really fun to watch him light up.

I love to go fishing with my dad. I have no interest in fishing or sitting on a lake for hours at a time, unless it's with my dad. My dad is the most wonderful man alive, and sometimes it makes me sad when my mother makes comments that love doesn't exist or when she complains about my dad. I've never heard her talk about falling in love with my dad, but I have heard Dad talk about loving Mom. I think it's really wonderful that my dad loves her despite all her faults. And he STILL loves her - 30 years after they started dating.

I know love exists, but I don't know if I'll ever be happy in a relationship because I have my dad as a role model - and it doesn't get better than him. He's brilliant, and fun, and my dad.

That's why I'm excited for this weekend. The Train Show. I don't really like trains, but I love the quality time with my dad.

***
Today -
Today I went to the hospital to get PFTs done - they screwed up the time which frustrated me, but I got over it. When I first did my PFTs I was so disappointed. The numbers weren't as high as the last time I finished a round of IVs a month ago. So I don't know what to say, except that I feel amazing, and that's all I can go on. If I go by what the numbers say, I probably shouldn't be able to dance as much as I do, but I can't go by the numbers.

Another problem arose at the hospital. I have a friend who has been inpatient for about a week, and they are making her go home tomorrow - and not on home IVs. Her PFTs have gotten better, but still, she needs to finish the course of IVs so the bugs don't get more resistant. This is the work of Dr. doPico and his nurse practitioner Micalene. I can't stand either of them. This is absurd!!! I told her she needs to fight it, but she's just so tired of fighting.

I'm tired of fighting the doctors too - which is why I've decided I will never be in that hospital again until I am ready for transplant. They can do my transplant and then get me the hell out of there and I will go on with my life. No one knows what the hell is going on there, and it's scary. I don't want to go back ever. Ever. Never. Ever. Ever.
The End.

Monday, February 11, 2008

Call Me a Masochist

I'm happiest when my feet hurt. When there are giant blisters, hard calluses and I can no longer walk because of the pain, I am happy. I love the exhaustion. I just love everything that comes with my dancing.

I love the social dancing, the drilling practices, the lessons. I love everything about ballroom dance. I'm not sure where or what day this post will say, as it's taken me several days to think about it and finally write it down, but I went to my team dance lesson on Saturday afternoon, then Saturday night I went to the social ballroom club I belong to.

There weren't many people at the club dance - UWMBDA is the club - because of the weather and various other reasons, but I still had a blast! I love my friends that I go dancing with, and I love meeting new people and working the table. I just love it all.

I came home from dancing early because I had to do my IVs, but I was so happy when I got home! Dancing makes me want to dance around and spin and I'm just dizzy with happiness. It's my passion. There are three big things I am passionate about in my life right now: Dance, writing, and doing stuff for the CF Foundation (like trying to get other CF support groups going and talking to CFers and parents... but that's another entry).

All three of those things are good for my health in different ways - the writing helps me emotionally, as does helping other CFers and getting support groups started. But the dancing - the dancing keeps me physically healthy. I love to push myself hard when I dance. I want to open those airways and I want to breathe deeply!

The exercise and socialization I get from dancing is priceless. Last summer I tried very hard to exercise. I started out running. I would run to the end of the block and back, but I never made any progress. I just felt like the idiot who would run daily to the end of the block and back. It was so quick and it was over. Plus it was boring.

I don't like walking because I'm by myself. I will walk to the ends of the earth if I have someone to talk to, but usually it's just me trying to walk for exercise.

I tried bike riding. My boyfriend at the time was big into trying to find me a way to exercise and big into bicycles. The first time we went for a bike ride we were downtown Madison, and I hadn't been on a bike in about 8 years. It was a disaster. When I finally felt like I might not die on the bike, we had ridden so far that I didn't want to turn around and ride back.

This happened a second time. He said that we should ride our bikes and go play tennis. I said okay because he convinced me that it was a short bike ride. We got "almost there" as he put it, and my lungs stopped working. I couldn't breathe and we were on a bike path - and I was terrified. I started crying. It was awful. I rested for awhile and eventually rode home and we took a short cut through the woods and he carried both the bikes so I could just concentrate on walking - but that was the last time we tried bike riding. The rest of the summer the bike just sat in my dining room, and now it's in storage, where it will probably stay for all of this summer.

Dancing is different. If I'm tired I can quit in the middle of a song and sit and no one cares. I can sit for an minute or an hour - whatever I need. I think it is the most wonderful form of exercise- I never get bored, and I never am too far from home that I start to cry. I cry if I'm too sick to go dancing. Hopefully I'll be able to dance and keep healthy!

It's now time for me to go to dance practice!

Re-posting.

These are more posts from Facebook - random rants that I wrote.

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...
http://www.onetruemedia.com/otm_site/view_shared?p=2402101948ea051d1858ac

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.

Lucky

This was originally written as a Facebook note, but I like it, so I'm reposting it here. It was written when I was feeling really sick in November. I'm now FINALLY feeling better, but I still feel the same way about everything. And I know I'm lucky.

I am lucky.

I don't know if anyone will ever understand how lucky I am. I don't know if I really comprehend how lucky I am. I am alive. I am 21 years old. When I was born my parents were told I wouldn't live past 16. I just watched a video about a girl who died three days before her 16th birthday. She was born the same year as my younger brother.

Why am I still alive when so many little kids are still dying from this awful disease? I have the severe case - I'm a double deltaF508 too, and I'm still alive.

I'm sick. Right now, as I sit here crying, I can feel mucus rattling in my lungs. That scares me. I just got out of the hospital. I'm doing everything I can, and I have no idea how soon I'll have to go back. They didn't give me vancomycin this time so we could avoid putting more strain on my kidneys, and maybe I should have been on the vanco - maybe it was the MRSA that made me sick. They never showed me the results of my cultures, so I don't know. And seeing as they handed me my own IV one day and I had to hang it myself I'm not sure how much I even trust that hospital.

This video about the girl who died before her 16th birthday really hit me.
http://www.youtube.com/watch?v=HHXbux-lFrc

They said something in one of these about hoping for a cure. And as much as I am hopeful that someday there will be a cure, deep down, I feel there is no cure. There is research for better treatments so maybe I will get another 10 years before I need to go on the transplant list, but I don't feel there is a cure.

How do they cure this? How do they cure everything I've gone through and everything my family and friends have been through because of this disease? How do they cure the damage that has already been done to my lungs? I can never have a pair of healthy lungs unless I have a transplant. And even then, I'm immuno-suppressed for the rest of my life... I don't win either way. My lungs are already hurt.

How do they cure the diabetes the CF has caused? How do they cure the damage to my pancreas so I won't have to take so many pills to digest my food. Will a "cure" solve the absorption problems? Will I be able to stop taking the vitamins? Because I'm pretty sure it's the enzymes that my pancreas is supposed to produce that help those be absorbed.

They have some really promising drugs in the pipeline, and I'm hoping to be in the study for the most promising one... But it's not a cure.

Every cell in my body has the wrong DNA. I have a missing amino acid on chromosome 7. How do they fix that?

I'm never going to be like everyone else.

It really makes me think about lung transplant... and when I'm going to get sicker. Sometimes I just don't know if I'm strong enough to do it. I don't know how I'm going to adjust every time I get a little bit sicker. I like the way things are now. I could do without the hospital stays and the meds and the endless treatments, but it's not so bad. What am I going to do when I have to be on oxygen? When I have to give up dancing? When I have to give up living?

But I think about those little kids again and I'm so lucky. I'm still here, and I guess all I can do is fight for them, for the ones who didn't make it. I can fight for my friends with CF and all the other people fighting. I can fight for my family and friends. I can fight for me. And that's all I can do. That, and hope my luck doesn't run out.


This is another one about that girl...
http://www.youtube.com/watch?v=CZGuTSpgfU8&feature=related

And this one has the song by Celine Dion... if you know me REALLY well, you'll get the song. Maybe you'll get it even if you don't know me that well.
http://www.youtube.com/watch?v=skQs6hBmC-w

And I have a bunch of CF videos as my youtube favorites. Ignore the sesame street... I enjoy watching it while I'm in the hospital.
http://www.youtube.com/profile?user=Mangochica786

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