Learning To Live

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!!! 5:18pm Friday, Apr 20, 2007 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 treate...

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...

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 ce...

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!!!

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 ou...

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.

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.

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 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 ...

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.

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...

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.

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...

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'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 ...

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)...

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 ...