Sunday, February 24, 2008

If You're Going....

(ETA - I am super sorry about my horrible mistake with your/you're in the title... what I get for writing before engaging brain in the morning)

Hey all, I haven't updated in a few days, and there is a very good reason for that. I've been in San Francisco since Thursday. Matt came down on Tuesday for a video game conference. I drove down (10 hours, thanks for asking) and here I am. Tyrone, one of our roommates came as well to stay with his uncle. I spent Friday at the conference, checking out all sorts of things, while my lovely husband worked his both, answering all sorts of technological questions that are far and beyond anything that I could understand. I did a little shopping then off to food. Yesterday was spent attending WonderCon, a comic book convention. It's totally not my scene, but I bought some awesome shirts, and met a really cool artist named Llyn Hunter. After we wrapped up there, we went down to China Town. We ate dinner, then went to the Chinese New Year Parade. It was very awesome, colorful and loud. But it was also at the height of a rain and wind storm so most people outside my 6th generation Oregonian genes were fairly miserable.
Today we are off to Fisherman's Wharf and Coit Tower. Then Monday, we'll be driving back up, taking the coast route this time and going through the redwoods.

Saturday, February 16, 2008

Question Wednesday #3

Okay I'm late --- but this week has been long! Wednesday night Matt and I got back from bowling. Matt had to work on things for an upcoming conference next week. I stayed up with him as long as I could before falling asleep around 6 AM. My phone rang all morning, all phone calls of things that I had to deal with, one that led to a few more phone calls. By the end of that I was done even trying to sleep and got out of bed and sat half awake until it was time to go to my dentist appointment. Two hours later I was cavity free. I made a quick stop at Target for prescriptions and some new soft bamboo sheets to surprise my honey with, then home. Then as soon as Matt got home we drove an hour to Salem to the theatre pub to have our Valentines dinner and see Stardust, which is an amazing movie. My hubby also got me balloons, flowers, and cuddly love bug stuffed animal :)

And now on to the question!

Terri C. asked : What is TOBI?

TOBI is a concentrated form of the antibiotic Tobramycin. It is a very powerful antibiotic that has been used for a long time, mostly in IV form. They used to put the same IV form in nebulizers to aerosol it and have CF patients inhale it. From what I hear, this was a 45 minute long form of bad tasting torture. In the mid 90's they decided to try and concentrate the tobramycin down and make it easier and quicker to inhale. They created TOBI and started the clinical trial which I was a part of. Once I was on the drug it showed improvement in my health. The tobramycin antibiotic is very effective against pseudomonas aeruginosa (psuedo for short). Pseudo is a bacteria that is found all over the place that is harmless to the normal population but is especially dangerous for those with compromised immune systems like those with cancer or AIDS, and bad for us kids with CF too. Most people with CF eventually end up having pseudo infection. It becomes a matter of keeping it under control and not letting it flare, as our thick mucus makes it nearly impossibly to completely get rid of.

A person with CF is typically on TOBI for a month, twice a day, then off it for a month. This is to help prevent the pseudo from becoming resistant to the TOBI. As much as it helps, I really don't like taking it. It tastes horrible, it adds another 30 minutes of med time to my day, and it makes the chest very tight, especially in the first week of use. I know how much good it does, but I still have the right to not like it much.

I recently had the chance to be on the newest way they are trying TOBI. It really excites me and I hope it gets approved by the FDA. They take the TOBI and turn it into a powder. You then breath the powder in through a little plastic thing, not much different from the Advair inhalers that they advertise on TV. Five little pills full of powder are breathed in, and the treatment is done. It took me all of five minutes and was awesome. I now miss it as I finished my part of the study and had to go back to normal TOBI.

Friday, February 15, 2008

Posts Coming

I know I've been quiet and missed Question Wednesday... two long, exhaustive days here... not bad just LONG. Hopefully will post up tomorrow. Right now I doubt I could write much of a coherent sentence!

Monday, February 11, 2008

Social Isolation

This is Chapter 8 in my history. Other chapters can be found by clicking the history link at the right.

As I progress in telling my story, I find it necessary to break from the chronological format that I've been following and instead start talking about broad concepts as my life began to get more complicated and less easy to break into small pieces.

I started college in September of 2000 at Western Oregon University. I had known at this point for a few years that I wanted to be an elementary teacher. I chose one of the best colleges in the nation for teaching, earned scholarships, and I was ready for a new challenge. I always had good grades growing up and learned easily, so I was not very intimidated by the world of academia. I was excited about the opportunity to challenge myself academically.

Because I lived my entire life in a small town, I knew everyone and I was fairly comfortable socially at that time. I wasn't the most popular, but I got along with the popular kids, I had a large group of friends that I trusted, and I was known for my bright and vibrant personality. This all was thrown in turmoil when I started at Western. There was only one other incoming freshman that I knew, a guy from my graduating class that I also had worked with at McDonald's. We weren't close, friendly enough to eat together in the dining hall, but nothing more. My long term crush, who was a year ahead of me, also went to WOU, but I hardly had the courage to talk to him, let alone create much of a friendship.

I thought that I would be okay at college. That I had grown from my social issues that plagued me in middle school. I quickly found though that I was very much an outcast at WOU. My dorm mates on my floor quickly bonded over shared experiences of getting trashed each weekend, skipping class, and keeping track of sexual escapades. While I didn't mind drinking with friends from back home, I didn't feel comfortable in the large party scene. I wanted to keep my scholarships and learn so I attended class. I believed in waiting until I was in love for sex, so earning points for doing it with two guys on the weekend was also out for me. I quickly earned the label of a square, nerd, and prude. It didn't help that I lived on a floor that was notorious for their escapades and I didn't quite fit in there. My roommate was okay and didn't participate in the scene of my floor either, but she was a star soccer player with a boyfriend so I spent as many nights in the room without her there than with her.

After a few weeks it became clear that I would not fit in on my floor. I tried out for the fall show, The Grapes of Wrath, and I earned a bit part after coming in second for the lead. I hoped that I could find some friends and acceptance in the theatre, which had been my home for so long. Instead, I found a group of already closely bonded friends who didn't have much room for a dorky freshman girl. I was never invited to go to cast parties, out to eat with them during breaks, and only involved in conversations if I made it a point to be involved. It was exhausting trying to be noticed. When I didn't try, I would be ignored and left to feel worse about myself. By November I was pretty sure that if I dropped off the face of the earth, no one at WOU would be the wiser. I'm still pretty sure that would have been the case.

By the spring of my freshman year, things had started to turn around a little, but the pain of that fall was still intense. I finally started to make friends from other parts of the dorms that I met in class or in the dining hall. Josh was another education major and he is still one of my good friends to this day. I also formed a friendship with his future wife Mik'ael. Jesse and George were roommates that couldn't stand each other, but I formed a friendship with both. I still talk to George, despite some rough patches, and he married one of my best friends from growing up, Jenn. I also formed a friendship with Lise, but lost track of her after time. But beyond that, I didn't have many friends at school. I would have people I was friendly with, but beyond those friends I had no one to hang out with. This trend followed me through all 4 years of school. If I had not had such strong friendships from growing up and renewed others from that time, I probably would not have made it through school and instead fallen into a deep depression. I'm fairly sure that I spent most of college depressed.

My sophomore, junior and senior years were spent living in very unhealthy roommate situations. I wasn't comfortable or happy at home or at school. My life was stress and it started to show in my health, something I will talk about later. My senior year was probably the most stressful. I had to deal with a situation that will be a chapter within itself that broke me for a long time.

I'd like to say that I became a stronger person for living through all of that. But as a social person, I think it hurt more than caused growth. I am glad that I was able to come out the other side okay, but I still am rebuilding myself. I still become anxious when I feel ignored or that people don't want me involved. I don't think that will ever change.

Make a Wish and Scholarships

This is Chapter 7 in my history... the rest can be found by clicking on history at the right.

I graduated from Cottage Grove High School ahead of the game for most of my peers. I had decided to go to college at Western Oregon University, I had earned scholarships, and I knew that I wanted to be an elementary teacher, something that Western specialized in. I fought hard to earn money for school, knowing that my family's financial situation made it so that we could not afford to send me without help, but the only help we qualified for was big loans. I ended up earning a scholarship through my father's employer, a lumber mill, and also through Western Oregon's Diversity Scholar Program, a program that aims to give students with a different background a chance to go to school and raise awareness. The award was based on any type of diversity, not just racial, so I used my experiences of growing up as a CFer in my essay. I ended up earning 4 years of paid tuition, a dream come true.

But before I could pack my bags and move up to college, I had an opportunity to have another wish come true.... seeing Broadway.

From time to time when I was little, my parents would receive a call from the Make-a-Wish foundation that my name had been referred to them and if we wanted them to grant me a wish. My parents always declined, asking that they spend their money on families where the kid was sicker, dying, or were in worse financial shape. I was fairly healthy, had a normal life, and while we didn't have much extra, we always made it by. I agree with this decision. It's this selflessness that has enriched my life that I learned from them. When I was 17, the social worker at my CF clinic at Oregon Health and Sciences University asked if I had ever had a wish. My mom told her that I had been nominated in the past, but always declined to give it to those who needed it more. Wendy told us that while it was true that there were kids who were sicker, we had to deal with situations and hardships caused solely by my CF. She was going to nominate me again, and this time I was going to take it as I was about to become to old. Sure enough, the phone soon rang, the MAW foundation. This time we accepted the offer. Two wish granters came to the house to talk with me and find out what I really wanted. At first I held back, asking for maybe a computer for school, but after a little pushing, I reviled that I really wanted to go to NYC and see Broadway. After years of doing theatre, collecting soundtracks, and learning to play songs on my piano, I wanted to see it all live. MAW made it happen for us... the most amazing trip of my life.
My parents, sister Heidi, and I went to NYC in September 2000. Our hotel was in the center of Times Square and we had 6 days in the city. MAW arranged for us to get prime tickets to Cabaret, Chicago, and Swing. All were amazing. I was so happy to see Cabaret, as it was, and still is, one of or my favorite musicals. We also toured the city, getting a VIP trip to the top of the Empire State Building, the ferry to the Statue of Liberty and Ellis Island, and trips to all the top museums. We also got ourselves into see the Rosie O'Donnell show (who has a nephew with CF), Dave Letterman, and saw a taping of the Today Show. We never had a dull moment... and it was amazing.
I am forever grateful for that trip... one of my biggest dreams came true. I was going to college, I had graduated high school, I earned scholarships, and I had seen Broadway. So many of my goals were achieved in a short little window. I looked forward to college with great optimism... however, it soon proved to be the most difficult and challenging period of my life. Something that will probably take awhile to write about, so stay tuned.

P.S. - I will be posting a few pictures of the trip, but I need to make a trip to get them and scan them :)

Friday, February 8, 2008


For several years, I've had chipped front teeth... this is due to a combination of my neglect of my teeth plus not having much enamel on my teeth from having antibiotics from when I was little... but the last month I've been getting them worked on... so I show you my teeth :)

Thursday, February 7, 2008


So I'm feeling better. I still have congestion in my chest, but I think I am on the uptrend. I've been doing my vest for an hour and a half to two hours the last few days instead of my usual forty minutes. Trying to beat all the junk out of there. I also started back on my TOBI for the month, which is an inhaled antibiotic and that should be helping as well. :)

I'll be posting more in my history soon...

Also no question Wednesday yesterday as no one gave me any!

Tuesday, February 5, 2008


I hate this disease today. I woke up this morning with a cough and feeling like I had been hit in the chest with a 2x4. May be getting sick, may be nothing... you never know. I just hate having a good run and seeing it crash. Through no fault of my own. I pray that it's just a one day thing. I know it may be. I know that it may not be. I gather my strength, I pray, and I try. But I also whine, I kick, I moan, I scream. It's natural.

Monday, February 4, 2008

Book Meme

From time to time I like to do these... they may not be about CF, but if everything were then I wouldn't be very healthy mentally or emotionally, now would I?

My Dear Sarah for this and since no one ever tags me here I go!

1. Pick up the nearest book ( of at least 123 pages).
2. Open the book to page 123.
3. Find the fifth sentence.
4. Post the next three sentences.
5. Tag five people. (I did this in my Live Journal).

The helpfulness that I felt all spring did not go away, but at least I had begun to combat it. My 8:00 A.M. English class met four times a week and remained the only class with which I could keep pace. Other classes depended too much on the work of the past ten weeks; I had to drop photography and Russian history.

From "The Stones Applaud" by Teresa Anne Mullin - a book about CF. Honestly not my favorite. She often seems bitter in it about many situations, rather it be things that were unknown at the time like mist tents and putting CFers in the same room is a bad thing, or injustices that she faced at school because of CF. While she does provide a view of CF in the 80's... I often felt like I was reading her bitterness, not the triumphs that she had.

So not my favorite book... but I usually try to read all that I can about CF, even the sad heartbreaking stuff, so I read it. I own it since I like buying books. May read it again, may not, which is huge statement from me because I usually will read a book repeatedly... I'd say 90% of the books on my shelf I've read at least 4 times.

Also, I would love book recommendations. After so many years of my life focused on becoming a teacher, I've fallen out of touch with good adult books. I have recently read P.S. I Love You which I really enjoyed and now I need something new :)

Friday, February 1, 2008


You may be wondering why I have a post titled Extraordinary and a picture of my car keys.

It goes like this...

We rush around this world, but sometimes pausing, finding something unexpected in the soup of chaos and randomness... well that is the word extraordinary and my keys.

Think about it, on a basic level, extraordinary is a compound word composed of extra and ordinary. Extra means more... and ordinary means the same, normal. So if one were to logically think about them put together, wouldn't it mean more of the same? But it doesn't. When thrown together they have a magical interaction and go beyond their means to create something else. Something very special. Two simple words, boring on their own, together create synergy.

And my keys? I placed them down on the coffee table as I brought the mail in today, then went about my business. It was only when I looked at them later, that I noticed that in that moment rules of physics, normalcy, and tedium paused and made something that I probably could not do if I sat down and tried.

It makes me wonder where extraordinary things come from. A line up of small boring things that all come together at the right moments and make something that probably shouldn't happen. Something that should not happen. So take a moment and stop, and look at a little piece of something unexpected.