I've always wondered if Jesus walks around in ordinary clothes, seeing how we treat people. It's a common wonder as a Christian. I've always wondered more after the experience I'm about to share.
My senior year of high school, I worked at the local McDonald's. Cottage Grove is a small town, but I-5 runs right through the town and is a convenient stop for travelers, and the first with several amenities in either direction, especially for travelers headed North. Thus, the only jobs for teenagers in Cottage Grove seems to be fast food. I didn't mind terribly working at McDonald's, even though we were insanely busy most nights. Being a freeway stop, we saw a number of travelers. Those from sports teams, greyhound bus passengers, truckers, and vagrants.
The night was one of those insanely busy nights. I was working the front counter and we had all four registers going, filling orders and moving at a very fast pace. The lobby was full and no matter how many people we served, there always seemed to be a crowd waiting. I noticed a man standing off to the side of the crowd. He swayed back and forth as he stood, wringing his hands, disconnected from the world around him. His clothes were not clean, his hair tangled, his face deeply tanned. I watched him while I filled a few orders, trying to figure our what he needed. The next chance I got, I motioned for him to come over to my register.
He approached with his head down, shuffling his feet as he walked. He mumbled as he ordered, with few comprehensible words. I worked with him trying to figure out what he wanted. Being a natural teacher, I always have had the tools to figure out how to know what people need, to help them express what they want. After a few minutes of working with him, I figured out what he wanted, a cheeseburger and french fries. He painstakingly counted out his money, mumblings as he did so. As I filled his order, I noticed him furiously scribbling on a piece of paper. I handed him his order. He lifted his head, and seem transformed... his clothes seemed less disheveled, his hair less tangled. He said to me, clearly, with confidence, "Thank you so much, God bless, this is for you". I looked at the piece of paper, and a few bible verses were on it as well as his name. The writing was clear and perfect, just as his last words to me. It was as if my kindness and patience transformed him. I had to take a moment to myself, as all of it seemed so surreal. I asked my coworkers if they had seen what had happened, and none of them had seen the man. As I had worked with him for several minutes, and he stood there, writing, which was unusual, I would have expected someone to notice, but no one did. It was if it was an experience just for me.
I still to this day wonder about that experience.
Monday, March 31, 2008
Sunday, March 30, 2008
Praying
I'm sending prayers, positive thoughts, and good vibes to Tricia tonight. If you have not read their story. Go ahead and do so... then join me in praying that her transplant is a go, for a safe journey through, and for the donor family who lost someone today but gave the gift of life.
I've been through this wait a number of times with other CFers, but it doesn't get any less filled with nervous, anxious, excitement. It never lacks in pain for the donor family that lost someone, but gratefulness at giving new life to someone who needs it so badly. If the surgery is a go, it comes on the birthday of my dear friend Eva who breathes every day with new lungs... fresh and full of life. It always seems that transplants come on the birthday, transplant day, or death day of someone related to the CF community.
update It was a "dry run", the term assigned to when you get the call and the lungs are determined not right. It can be for a number of reasons, but it is fairly common. But it doesn't make it suck any less. A chance for new life put on hold and still a life lost.
I've been through this wait a number of times with other CFers, but it doesn't get any less filled with nervous, anxious, excitement. It never lacks in pain for the donor family that lost someone, but gratefulness at giving new life to someone who needs it so badly. If the surgery is a go, it comes on the birthday of my dear friend Eva who breathes every day with new lungs... fresh and full of life. It always seems that transplants come on the birthday, transplant day, or death day of someone related to the CF community.
update It was a "dry run", the term assigned to when you get the call and the lungs are determined not right. It can be for a number of reasons, but it is fairly common. But it doesn't make it suck any less. A chance for new life put on hold and still a life lost.
Saturday, March 29, 2008
Swimming
So I know I have not posted in a bit... as Matt keeps reminding me! I don't know, just haven't had much new to say!
Today however, I took an important step in trying to maintain what lung function that I have. I went down to our community recreation center down the road and bought a 3 month pass to the pool/fitness center. Then I went "swimming" today. Okay, I really don't lap swim, but I did move around in the water, made my lungs and muscles work, and got a very productive cough. I'm going to try to go often, as I like moving in water, it's great for improving lung function, and I paid for it so I should use it!
Today however, I took an important step in trying to maintain what lung function that I have. I went down to our community recreation center down the road and bought a 3 month pass to the pool/fitness center. Then I went "swimming" today. Okay, I really don't lap swim, but I did move around in the water, made my lungs and muscles work, and got a very productive cough. I'm going to try to go often, as I like moving in water, it's great for improving lung function, and I paid for it so I should use it!
Thursday, March 20, 2008
CFRD Appointment
So I had my appointment on Wednesday and it went fairly well. No radical changes to my diet other than continuing to watch my sugar intake... trying to balance what I eat. I monitor about 3 times or so a day, and I send in the results in 2 weeks, then see where we go from there. Mostly a waiting and watching game.
In other news, I'm already halfway to my goal on my CF walk!
In other news, I'm already halfway to my goal on my CF walk!
Monday, March 17, 2008
Hero of the Day and CFRD
So I've really started to kick it up on the fundraising side for my CF walk. Part of my campaign was to see if I could get a bunch of small donations from a shopping site that I'm a member of, Jellyfish. JF is a site that auctions off one item at a time, with the price going down, until someone buys it. There also is a chat component where people talk while the price ticks down. I started to use the chat to share my story, this site, and the link to donate to my CF walk. I quickly had numerous donations rolling in and I was touched. Today I was nominated for Smack Hero, which is ceremonial by nature, but also gets the word of CF awareness out there which is something that is deeply meaningful and touching to me.
On the health front, I've started my path down the road of dealing with my CFRD (CF-related diabetes). I've always known that I was at high risk for CFRD. The older us CF patients get, the more our risk goes up at developing diabetes. This is mainly because with the CF affecting the pancreas, it slowly slows down, and decreases it's production of insulin. I've ran some high blood sugars for years, but finally at my last fasting glucose test it was determined that while I do not fully have CFRD yet, I am glucose intolerant, meaning my body does not process blood sugar as quickly as needed.
I had my first appointment with the endocrine team at OHSU on Wednesday. Right now they are still formulating a plan of action. I'll be going back up to OHSU on Wednesday, where I'll be meeting with the diabetes educator. They will most likely have more diet changes for me besides cutting out Pepsi which I have been fairly successful at. I'll also be getting a meter, which I'll probably have to use intensely for 6 weeks. We'll be working on determining if I can control my CFRD through diet, if I need pills to stimulate insulin production, or if I need to go all the way to shots. I'm not looking forward to doing the monitoring, but I don't have a choice, so I'll have to accept it and move on. Something that I'm fairly used to at this point. I just hate not knowing the exact plan. That's my main complaint with CF. I never know when the next major infection is going to be... I don't know when or if I'll get a transplant... and it bothers me. I'm fine with what the results are going to be, but I just want to know....
On the health front, I've started my path down the road of dealing with my CFRD (CF-related diabetes). I've always known that I was at high risk for CFRD. The older us CF patients get, the more our risk goes up at developing diabetes. This is mainly because with the CF affecting the pancreas, it slowly slows down, and decreases it's production of insulin. I've ran some high blood sugars for years, but finally at my last fasting glucose test it was determined that while I do not fully have CFRD yet, I am glucose intolerant, meaning my body does not process blood sugar as quickly as needed.
I had my first appointment with the endocrine team at OHSU on Wednesday. Right now they are still formulating a plan of action. I'll be going back up to OHSU on Wednesday, where I'll be meeting with the diabetes educator. They will most likely have more diet changes for me besides cutting out Pepsi which I have been fairly successful at. I'll also be getting a meter, which I'll probably have to use intensely for 6 weeks. We'll be working on determining if I can control my CFRD through diet, if I need pills to stimulate insulin production, or if I need to go all the way to shots. I'm not looking forward to doing the monitoring, but I don't have a choice, so I'll have to accept it and move on. Something that I'm fairly used to at this point. I just hate not knowing the exact plan. That's my main complaint with CF. I never know when the next major infection is going to be... I don't know when or if I'll get a transplant... and it bothers me. I'm fine with what the results are going to be, but I just want to know....
Friday, March 14, 2008
Finishing College
This is Chapter 12 in my history.
After the whole debacle with the professor, my college life change drastically. Instead of having stress from that situation, I had stress from teaching, working, staying alive, and I thrived on it. I was so busy that it really didn't matter that I felt socially isolated because I would not have had time to hang out with anyone anyways. But I was also starting to make life long friends at work and some of my friendships that we once strained were starting to heal.
I spent the last two terms of college insanely busy. I was living in Monmouth, student teaching in Corvallis, and working in Salem. My days were as follows...
6:30 AM - Get up, shower or do a treatment if I took a bath the night before, and get dressed
6:55 AM - Get on the road for my 30 minute drive to Corvallis. Snack on random food I grabbed while running out the door. Stop at the grocery store on my way to school and grab something for lunch.
7:30 AM - Arrive at school, get my last minute stuff together to teach or assist all day.
4:00 PM - After a long day of teaching either head home on my few days off from work or head to Salem for work. Salem was about an hour drive from Corvallis. I would get some sort of fast food to eat on my drive to hold my appetite over while I worked.
5:00 PM - Rush into work just in time to clock on. Work my over 5 hour shift running the women's department. I was a benefited team member which made me basically an assistant manager of the department. I was responsible if my manager wasn't there and spent my shift directing the department and moving constantly clearing the contents of the fitting room as I was our best "runner" in the store, something to this day I find ironic on my 50% or less lung capacity.
10:30 PM - I'd usually get out of work at this time. I would drive home, sometimes stopping at the store for a snack or dinner for that night or meals for the next day. After my nearly 30 minute drive home I'd get home and do any remaining lesson planning, treatments if I was up to it, then crash into bed.
My weekends were often filled with 8 hour shifts at work on both days, catching up on sleep, doing any lesson plans I could to get me through the week, and enjoying my own cooking after a week of processed and quick-cook foods.
Needless to say, this type of schedule would be harmful to a healthy person, but to me it was flirting with serious complications. But there honestly was no way for me to avoid the situation. I had to live in Monmouth for my low rent, I wasn't about to give up my dream of being a teacher after fighting so hard, and I needed to work at least 24 hours a week to hold on to my health insurance. As hard as it was, I was deeply proud of myself that I was able to do it. When classmates complained about how hard they worked when they were only teaching I laughed at them on the inside, wondering what they would do if they were in my position. I learned that I was more powerful than my situation, that if I really wanted something I could do it. I was stubborn, but it's the only thing that got me through.
After several months of this schedule, only weeks before graduation, my body finally started to protest the abuse that I put it through. I managed to hold off lung infections, I think through sheer willpower and grace from God, but my body needed a break and chose a very violent way to get it.
I had just wrapped up my 3 weeks of solo student teaching and had just returned to team teaching with my mentor teacher. School had let out for the day and I was spending the time after school working in the office at the paper cutter. I looked forward to my evening without work and was relaxed, when sudden, blinding pain rushed over me. It felt as if I had been stabbed in the back. I reached back to feel what was happening, but only found the tense muscles of my back. I knelt down to the floor, as waves of nausea rushed over me. My back was killing me and I could feel the muscles of my back and stomach tense. I stood up slowly, gathered my things, and willed myself to walk to my classroom where I laid down on the couch, waiting for the pain to pass.
After about 15 minutes the pain remained at high intensity. My mentor teacher saw me, noticed how poorly I looked, and sent me home. I made my way to my car in a fog of pain and used every last cell of my body to focus on the road... one more mile, one more instant, I could do it. I made it a few miles down the road where I felt the intensity of the nausea kick up. I stopped at a grocery store and rushed to the bathroom. I couldn't vomit, but I did use the bathroom, and rationalized that I was just backed up and going would make the pain better. I went out to my car, pain still gripping me. I continued my drive home, glancing at the hospital on my way, wondering if I should be driving to the ER and not home. I decided to go home, as I knew I was probably just having stomach cramps.
A few more miles down the road the waves of nausea turned into a huge crashing storm. I pulled over in the first safe place and was puking out the car door before I even got the car fully stopped. Two big heaves and my stomach was empty. I figured that I just had intense food poisoning, after all my ranch at lunch did taste funny, and I drove home, figuring the pain in my back would go away. I made it home, not even remembering the last 10 minutes of the drive. I hopped into the bath as soon as I got home, scalding my skin with the heat. The pain and tenseness in my back didn't go away. I climbed into bed, put a hot pack on my back and watched some TV. As soon as the water was hot again, I took another bath. Then to bed... and 15 hours later I awoke in bed in the same position I had passed out in. The pain was still there. A little voice in the back of my head started whispering "kidney stone". I dragged myself to my computer, looked up the symptoms. They matched me perfectly. I called my friend and we drove to Salem where I was quickly diagnosed with a kidney stone and gave heavy duty oral pain killers. I spent the next 2 days in bed, pain at a less loud roar from the drugs. The fourth day, I still had not cleared the stone and I was still in pain, but I had to go to school as we only were allowed 3 days off. I was useless, and my mentor teacher realized it, but I was still there. Finally that weekend my stone passed. It took me several days before my body recovered from such pain.
A few weeks later, college was all over, and I was off to start my adult life...
After the whole debacle with the professor, my college life change drastically. Instead of having stress from that situation, I had stress from teaching, working, staying alive, and I thrived on it. I was so busy that it really didn't matter that I felt socially isolated because I would not have had time to hang out with anyone anyways. But I was also starting to make life long friends at work and some of my friendships that we once strained were starting to heal.
I spent the last two terms of college insanely busy. I was living in Monmouth, student teaching in Corvallis, and working in Salem. My days were as follows...
6:30 AM - Get up, shower or do a treatment if I took a bath the night before, and get dressed
6:55 AM - Get on the road for my 30 minute drive to Corvallis. Snack on random food I grabbed while running out the door. Stop at the grocery store on my way to school and grab something for lunch.
7:30 AM - Arrive at school, get my last minute stuff together to teach or assist all day.
4:00 PM - After a long day of teaching either head home on my few days off from work or head to Salem for work. Salem was about an hour drive from Corvallis. I would get some sort of fast food to eat on my drive to hold my appetite over while I worked.
5:00 PM - Rush into work just in time to clock on. Work my over 5 hour shift running the women's department. I was a benefited team member which made me basically an assistant manager of the department. I was responsible if my manager wasn't there and spent my shift directing the department and moving constantly clearing the contents of the fitting room as I was our best "runner" in the store, something to this day I find ironic on my 50% or less lung capacity.
10:30 PM - I'd usually get out of work at this time. I would drive home, sometimes stopping at the store for a snack or dinner for that night or meals for the next day. After my nearly 30 minute drive home I'd get home and do any remaining lesson planning, treatments if I was up to it, then crash into bed.
My weekends were often filled with 8 hour shifts at work on both days, catching up on sleep, doing any lesson plans I could to get me through the week, and enjoying my own cooking after a week of processed and quick-cook foods.
Needless to say, this type of schedule would be harmful to a healthy person, but to me it was flirting with serious complications. But there honestly was no way for me to avoid the situation. I had to live in Monmouth for my low rent, I wasn't about to give up my dream of being a teacher after fighting so hard, and I needed to work at least 24 hours a week to hold on to my health insurance. As hard as it was, I was deeply proud of myself that I was able to do it. When classmates complained about how hard they worked when they were only teaching I laughed at them on the inside, wondering what they would do if they were in my position. I learned that I was more powerful than my situation, that if I really wanted something I could do it. I was stubborn, but it's the only thing that got me through.
After several months of this schedule, only weeks before graduation, my body finally started to protest the abuse that I put it through. I managed to hold off lung infections, I think through sheer willpower and grace from God, but my body needed a break and chose a very violent way to get it.
I had just wrapped up my 3 weeks of solo student teaching and had just returned to team teaching with my mentor teacher. School had let out for the day and I was spending the time after school working in the office at the paper cutter. I looked forward to my evening without work and was relaxed, when sudden, blinding pain rushed over me. It felt as if I had been stabbed in the back. I reached back to feel what was happening, but only found the tense muscles of my back. I knelt down to the floor, as waves of nausea rushed over me. My back was killing me and I could feel the muscles of my back and stomach tense. I stood up slowly, gathered my things, and willed myself to walk to my classroom where I laid down on the couch, waiting for the pain to pass.
After about 15 minutes the pain remained at high intensity. My mentor teacher saw me, noticed how poorly I looked, and sent me home. I made my way to my car in a fog of pain and used every last cell of my body to focus on the road... one more mile, one more instant, I could do it. I made it a few miles down the road where I felt the intensity of the nausea kick up. I stopped at a grocery store and rushed to the bathroom. I couldn't vomit, but I did use the bathroom, and rationalized that I was just backed up and going would make the pain better. I went out to my car, pain still gripping me. I continued my drive home, glancing at the hospital on my way, wondering if I should be driving to the ER and not home. I decided to go home, as I knew I was probably just having stomach cramps.
A few more miles down the road the waves of nausea turned into a huge crashing storm. I pulled over in the first safe place and was puking out the car door before I even got the car fully stopped. Two big heaves and my stomach was empty. I figured that I just had intense food poisoning, after all my ranch at lunch did taste funny, and I drove home, figuring the pain in my back would go away. I made it home, not even remembering the last 10 minutes of the drive. I hopped into the bath as soon as I got home, scalding my skin with the heat. The pain and tenseness in my back didn't go away. I climbed into bed, put a hot pack on my back and watched some TV. As soon as the water was hot again, I took another bath. Then to bed... and 15 hours later I awoke in bed in the same position I had passed out in. The pain was still there. A little voice in the back of my head started whispering "kidney stone". I dragged myself to my computer, looked up the symptoms. They matched me perfectly. I called my friend and we drove to Salem where I was quickly diagnosed with a kidney stone and gave heavy duty oral pain killers. I spent the next 2 days in bed, pain at a less loud roar from the drugs. The fourth day, I still had not cleared the stone and I was still in pain, but I had to go to school as we only were allowed 3 days off. I was useless, and my mentor teacher realized it, but I was still there. Finally that weekend my stone passed. It took me several days before my body recovered from such pain.
A few weeks later, college was all over, and I was off to start my adult life...
Wednesday, March 12, 2008
Humanity
The last few days I have been touched by a lot of people, many of whom I've never met, who have supported me and have given to my walk generously. I am overwhelmed by this and it all comes at a time that someone in my life deeply hurt me and isn't even aware that they did so. I love that just when I feel like there may be few good, caring people in this world, God reveals to me a side of humanity full of love and compassion.
Tuesday, March 11, 2008
Great Strides
So every year the CF foundation puts on Great Strides, a nationwide walk-a-thon to raise money. It's their biggest fundraiser and I've participated a few times. I am already 10% of the way to my goal with 9 weeks to go til the walk. I'm planing some cool things that may or may not happen, but you can check out my page and even donate using the link on the left or going to http://www.cff.org/Great_Strides/TalanaFairfax.
My goal is only 10 dollars from each donor. If you give more than I will be incredibly touched. At just 10 dollars a piece I only need 90 more people... and I know that I have more than that in people coming to this site in a week. We still have 2 months before the walk, but I'm ready to get cracking to raise money to save my life!
My goal is only 10 dollars from each donor. If you give more than I will be incredibly touched. At just 10 dollars a piece I only need 90 more people... and I know that I have more than that in people coming to this site in a week. We still have 2 months before the walk, but I'm ready to get cracking to raise money to save my life!
Monday, March 10, 2008
Non-compliance
I know I haven't updated for a bit. I've been pulling into myself a little more lately. Times like this I become less social, more disconnected, and I find it hard to make myself do my treatments. I had a long run of perfection, something that I didn't have forever, but I'm back to struggling with doing all of my treatments every single day. I just finished my morning treatments and I feel proud that I did them, as they are the ones that I struggle most with forcing myself to do. But I have had some people show concern about me not doing them... caring about me... something that I didn't really have or notice for my years of non-compliance. As much as I begrudge this attention, deep down I appreciate their concern for me. So I am picking myself back up and fighting... doing my meds.
Monday, March 3, 2008
Falling Apart
This is Chapter 11 in my history... others can be found by clicking the history tab at the right
After my stain in the hospital, I returned to Western Oregon University to start the education program. I was excited that after years of school I was finally about to dive into the core of what I was there for.
Every student in the WOU education program is placed in a group with about 15 other students and one advisor. I ended up being placed under a man who was acting as his first term as an advisor. I will call him D, only to protect his privacy, but after this story, it's hard for me to do because I want to scream to the world about what he did.
I was familiar with D. Only a few terms before he was a fellow student with me in Teaching Writing. This was the class that I often butted heads with the professor in. I didn't think anything of D carrying over experiences from the class to being my advisor, but it happened.
At first I didn't really notice any problems. Going to class, working on projects, networking with fellow students was my concern. I think that entire first term I had a few weird feelings after things that D said to me, but nothing that really triggered much. The entire first term of the Ed program was devoted to starting work on our professional portfolio. We had to take pieces that we worked on through the term and show how they fit into to competencies that were required by the state. It was a time intensive project, something that I worked several hours on, and turned in with a sense of accomplishment.
The rug was torn out from under me when I met with D to discuss my portfolio. He berated my work the entire time. My work was filled with red marks, several per page, and paragraphs of angry words about my lack of competence as a student and a writer. I always struggled with grammar and spelling and having it all laid out in red screaming words hit my panic button and a deep seeded hurt. He picked apart every page, every thought. Even passages that were grammatically correct and spelled right were ripped apart because he did not agree with my style. I was devastated to say the least. Insult to injury was added when he picked apart how I acted in our previous class when we were both students. He told me that if I couldn't shut up and listen to a professor then I was giving myself a disservice to my education and I could never be viewed as a professional. That if a professor says it, I should automatically believe it as the only truth because they are the professional.
I came away from the meeting deeply hurt. I had an entire summer to lick my wounds. I considered several times contacting the university and being switched advisers, but I didn't know if I had just reason, and I believe in giving everyone a fair chance.
Fall started exactly where I left the situation the previous Spring in D's office. He continued to try to break me down as a person and as an academic. The volleys of insult increased in frequency and intensity as the weeks ticked by. I took solace in the fact that there were a few other students also being attacked by D, but I also received the brunt of it. D started to use my name in class to speak poorly about my work. Comments like "Well quite frankly what happened to you this week because your work was more terrible than normal" were said in front of the entire class. The irony of being taught that naming students by name and their performance was illegal in other classes that term was not lost on me.
I continued to take the abuse. I figured I'd show him that I could listen... but the pain, the shame, the desperation was building with each comment. We started out in the schools that term. My mentor teacher and I had a good working relationship and I was excited to be in the classroom. D frequently came to observe, and I know from asking other students that he came to observe me more frequently, waiting for me to slip up. He wrote me a vaguely worded email that I was not dressing professionally. That he had been approached by multiple people about this. While I doubted this claim, I knew that I did not dress as preppy as other kids in the program, mostly due to a lack of funds. My clothes were threadbare at times, and I didn't have time to iron everything as I was still working about 30 hours a week on top of my school work. At the end of the email he put that I "needed to watch myself". This single line pushed me over the edge. I took everything that I had documented about D, the occurrences that I have mentioned and many more similar ones, and I emailed them to the professor that I trusted most in the program. I also sent a copy to D. I felt that I should give him the chance to change, a last chance rope to appeal to his humanity.
I realized that I was being harassed. It may not be sexual harassment as so many young women experience in college, but it was pure harassment. Sending that email was difficult, but I couldn't stand to be his victim any longer.
My email was forwarded around the education program, but before any action could happen, I found myself in my final evaluation with my mentor teacher and D. A week before my mentor teacher had given me glowing reviews. After a closed door meeting with D, where he shared my email to him with my mentor teacher, which included nothing about her, my mentor teacher gave me a harsh review of my time. My scores on professionalism went way down based on my email and relationship with D. I was highly upset by this as nothing that happened between D and I effected my time in the classroom. Sharing that email was a huge slap in the face.
After this meeting I was called to the university to meet with D and the supervisor of teacher placement at WOU. What I was told was a mediation session turned into an assault on every thing that I did the entire time I was in the program. I was accused of doing things that never happened, I was told that I wasn't going to make it through the program, and that D had never done anything unprofessionally. When I gave examples like him sharing comments about my work, I was told that it was his right and that he was only doing what he could to teach me. I went from being deeply hurt to feeling my entire world fall apart. They cooked up a contract with a number of terms that were unfair to me as a student and told me that I had to sign it or I would be kicked out of the program. While I did not agree, I also felt I had to sign it as my dream was to become a teacher. I made sure that my disagreements with the contract were noted on it before I signed. They also refused to change me out of D's group, one of my main demands. I knew that no amount of "mediation" would make the situation better. I was tempted to quit there, because I was not sure how I could make it another two terms with D, after how badly he had broken me after the two previous. Before I left the mediation I also made sure that D and the other advisor knew that I was going to contact a lawyer about the harassment that I had received at the hands of the university.
In the fifteen minutes that it took me to get home, the university started singing another tune. They were more than willing to change my advisor, but I had to stay with the contract. This was something that I was willing to do, as long as I was freed of the toxic environment of D. I had to move to a new school to do my student teaching, but I was now under that trusted professor that I had sent the original email to. I didn't have the easiest time, but my new mentor teachers loved my work and crowed about my talents. They also realized that having a chronic illness, working 30 hours a week, the amount of commuting I was doing, and being a full-time student teacher was a lot to handle. They didn't require perfection from me and I flourished in their classrooms. My new advisor, while at times harsh, was far better than D.
I wish I could say that D was fired over the incident, but he wasn't. He continued to advise the other students, but I heard from them that he was less harsh on them after me. He disappeared from WOU that Spring. I soon found out that he was teaching at a local middle school. The thought of him working with students who were younger and weaker than I was at 21 broke my heart. However, D was found a few years later engaging in inappropriate conduct in a local park with several other men. I take solace in the fact that this got him removed from the classroom. He should never be allowed to break people like he broke me.
I am still recovering from D. I still feel very anxious when my spelling and grammar are corrected. I didn't write much for an entire year after college, even though I had so many other people tell me that I was talented. I always felt less capable in professional situations. I'm slowly getting my confidence back, but it has taken far longer to return then it left me. I also learned in the passing years that I was saved from D being my advisor by threatening that lawsuit. Unknown to me at the time, a top professor in the Ed school was under investigation for sexual harassment. While mine was not sexual in nature, the school did not need two harassment suits at the same time and went to all lengths to prevent it. State laws passed because of the other case setting up clearer pathways for students who feel harassed. I am happy those rules are in place, but they are mostly focused on sexual harassment. I hope the colleges realize that all forms of harassment exist and they are all devastating.
After my stain in the hospital, I returned to Western Oregon University to start the education program. I was excited that after years of school I was finally about to dive into the core of what I was there for.
Every student in the WOU education program is placed in a group with about 15 other students and one advisor. I ended up being placed under a man who was acting as his first term as an advisor. I will call him D, only to protect his privacy, but after this story, it's hard for me to do because I want to scream to the world about what he did.
I was familiar with D. Only a few terms before he was a fellow student with me in Teaching Writing. This was the class that I often butted heads with the professor in. I didn't think anything of D carrying over experiences from the class to being my advisor, but it happened.
At first I didn't really notice any problems. Going to class, working on projects, networking with fellow students was my concern. I think that entire first term I had a few weird feelings after things that D said to me, but nothing that really triggered much. The entire first term of the Ed program was devoted to starting work on our professional portfolio. We had to take pieces that we worked on through the term and show how they fit into to competencies that were required by the state. It was a time intensive project, something that I worked several hours on, and turned in with a sense of accomplishment.
The rug was torn out from under me when I met with D to discuss my portfolio. He berated my work the entire time. My work was filled with red marks, several per page, and paragraphs of angry words about my lack of competence as a student and a writer. I always struggled with grammar and spelling and having it all laid out in red screaming words hit my panic button and a deep seeded hurt. He picked apart every page, every thought. Even passages that were grammatically correct and spelled right were ripped apart because he did not agree with my style. I was devastated to say the least. Insult to injury was added when he picked apart how I acted in our previous class when we were both students. He told me that if I couldn't shut up and listen to a professor then I was giving myself a disservice to my education and I could never be viewed as a professional. That if a professor says it, I should automatically believe it as the only truth because they are the professional.
I came away from the meeting deeply hurt. I had an entire summer to lick my wounds. I considered several times contacting the university and being switched advisers, but I didn't know if I had just reason, and I believe in giving everyone a fair chance.
Fall started exactly where I left the situation the previous Spring in D's office. He continued to try to break me down as a person and as an academic. The volleys of insult increased in frequency and intensity as the weeks ticked by. I took solace in the fact that there were a few other students also being attacked by D, but I also received the brunt of it. D started to use my name in class to speak poorly about my work. Comments like "Well quite frankly what happened to you this week because your work was more terrible than normal" were said in front of the entire class. The irony of being taught that naming students by name and their performance was illegal in other classes that term was not lost on me.
I continued to take the abuse. I figured I'd show him that I could listen... but the pain, the shame, the desperation was building with each comment. We started out in the schools that term. My mentor teacher and I had a good working relationship and I was excited to be in the classroom. D frequently came to observe, and I know from asking other students that he came to observe me more frequently, waiting for me to slip up. He wrote me a vaguely worded email that I was not dressing professionally. That he had been approached by multiple people about this. While I doubted this claim, I knew that I did not dress as preppy as other kids in the program, mostly due to a lack of funds. My clothes were threadbare at times, and I didn't have time to iron everything as I was still working about 30 hours a week on top of my school work. At the end of the email he put that I "needed to watch myself". This single line pushed me over the edge. I took everything that I had documented about D, the occurrences that I have mentioned and many more similar ones, and I emailed them to the professor that I trusted most in the program. I also sent a copy to D. I felt that I should give him the chance to change, a last chance rope to appeal to his humanity.
I realized that I was being harassed. It may not be sexual harassment as so many young women experience in college, but it was pure harassment. Sending that email was difficult, but I couldn't stand to be his victim any longer.
My email was forwarded around the education program, but before any action could happen, I found myself in my final evaluation with my mentor teacher and D. A week before my mentor teacher had given me glowing reviews. After a closed door meeting with D, where he shared my email to him with my mentor teacher, which included nothing about her, my mentor teacher gave me a harsh review of my time. My scores on professionalism went way down based on my email and relationship with D. I was highly upset by this as nothing that happened between D and I effected my time in the classroom. Sharing that email was a huge slap in the face.
After this meeting I was called to the university to meet with D and the supervisor of teacher placement at WOU. What I was told was a mediation session turned into an assault on every thing that I did the entire time I was in the program. I was accused of doing things that never happened, I was told that I wasn't going to make it through the program, and that D had never done anything unprofessionally. When I gave examples like him sharing comments about my work, I was told that it was his right and that he was only doing what he could to teach me. I went from being deeply hurt to feeling my entire world fall apart. They cooked up a contract with a number of terms that were unfair to me as a student and told me that I had to sign it or I would be kicked out of the program. While I did not agree, I also felt I had to sign it as my dream was to become a teacher. I made sure that my disagreements with the contract were noted on it before I signed. They also refused to change me out of D's group, one of my main demands. I knew that no amount of "mediation" would make the situation better. I was tempted to quit there, because I was not sure how I could make it another two terms with D, after how badly he had broken me after the two previous. Before I left the mediation I also made sure that D and the other advisor knew that I was going to contact a lawyer about the harassment that I had received at the hands of the university.
In the fifteen minutes that it took me to get home, the university started singing another tune. They were more than willing to change my advisor, but I had to stay with the contract. This was something that I was willing to do, as long as I was freed of the toxic environment of D. I had to move to a new school to do my student teaching, but I was now under that trusted professor that I had sent the original email to. I didn't have the easiest time, but my new mentor teachers loved my work and crowed about my talents. They also realized that having a chronic illness, working 30 hours a week, the amount of commuting I was doing, and being a full-time student teacher was a lot to handle. They didn't require perfection from me and I flourished in their classrooms. My new advisor, while at times harsh, was far better than D.
I wish I could say that D was fired over the incident, but he wasn't. He continued to advise the other students, but I heard from them that he was less harsh on them after me. He disappeared from WOU that Spring. I soon found out that he was teaching at a local middle school. The thought of him working with students who were younger and weaker than I was at 21 broke my heart. However, D was found a few years later engaging in inappropriate conduct in a local park with several other men. I take solace in the fact that this got him removed from the classroom. He should never be allowed to break people like he broke me.
I am still recovering from D. I still feel very anxious when my spelling and grammar are corrected. I didn't write much for an entire year after college, even though I had so many other people tell me that I was talented. I always felt less capable in professional situations. I'm slowly getting my confidence back, but it has taken far longer to return then it left me. I also learned in the passing years that I was saved from D being my advisor by threatening that lawsuit. Unknown to me at the time, a top professor in the Ed school was under investigation for sexual harassment. While mine was not sexual in nature, the school did not need two harassment suits at the same time and went to all lengths to prevent it. State laws passed because of the other case setting up clearer pathways for students who feel harassed. I am happy those rules are in place, but they are mostly focused on sexual harassment. I hope the colleges realize that all forms of harassment exist and they are all devastating.
Sunday, March 2, 2008
Losing Gamps, Finding God
This is Chapter 10 in my history (9 was posted last night, so if you haven't checked for a few days read that too)
By March of 2003 the years of not taking care of myself and the progressive nature of CF finally caught up with me. I needed my first "tune-up" the term used in CF for going into the hospital for IV antibiotics. It's routine for most people with CF, going in for a course of antibiotics a few times a year, but for me it was a strange and unusual world. I had been in the hospital a few times, for my appendix, putting in my feeding tube, and once while I was on a study so they could monitor my calorie intake and output while on a study for digestive enzymes.
While I was a little scared, I wasn't that off put by being in the hospital. It fell right at the perfect time. I was able to wrap up my last finals for the term then go straight to the hospital for spring break. Because the closest CF center is in Portland, I was isolated from all of my friends at the time, and it was over a 2 hour drive for my parents, so I spent most of my stay by myself. It was a bizarre time for me. I was anticipating the start of school, since it would be my first term in the four term education program that would enable me to earn my teaching licence. I had some stress with the application process but made it through and I was ready for all my hard work to start to take flight. Work was not going well for me, but I finally had a boss who understood and respected me, so things were looking brighter there.
My only entertainment while in the hospital was the TV. I love watching TV, but even the TV was in a strange time, as it was the very beginning of the Iraq war, something I deeply disagreed with and doubted highly the reasons as to why we were there. All of the channels were all Iraq all the time. I watched the first tanks roll out of Kuwait, I watched as the first reports of death, I watched because there was nothing else I could do and the news fit my sense of lack of control.
While I was in the hospital, my paternal Grandfather, Paul Lyda, was recovering from pneumonia. Gamps had been sick for many years with Parkinson's disease, and he and I had a close bond. My primary after school care for many years was found at my grandparents, and Gamps was always patient enough to sit for hours playing board games with me. He taught me how to play the harmonica, and I have many memories of sneaking sweets with him, much to my Grandmother's chagrin. He loved listening to me perform on the piano and sing... his special request was "Rocking Around the Christmas Tree" which I played in the heat of the summer, the rains of March, and with extra gusto during the holidays. Grandma and Gamps also took my sister and I to church every Sunday. While I had not attended for several years at this point, I had a foundation of faith in my life, but like many believers, I would sometimes doubt it all. I believed, but I wasn't sure how it all worked.
One night while in the hospital, I had a very unsettled feeling. I felt restless and that I was waiting for something to happen. The little voice in the back of my head was telling me that I had to stay up, that something was going to happen, that I needed to wait. I watched the TV, bored, glazed over eyes, but I knew that I couldn't fall asleep. It was the strangest feeling. What I did not know was that my Gamps had taken a sudden turn for the worst. Over 100 miles away, my family was gathering at his bedside, saying thier last goodbyes.
It was the wee hours of the morning. Suddenly, my room was full of light. The unease that I felt melted away. I felt a warmth and comfort. Then I heard Gamp's voice... "It's okay, I'm alright Tweetums, I've gone home to God". I felt his presence drift away from the room. The unsettled, waiting feeling was gone. I looked at the clock, noted the time, and fell into a deep sleep.
In the morning I was woken up by my mother calling. Before she could tell me something she knew would break my heart, I told her that I already knew. She wondered who told me, but I told her my story. Gamps came and said goodbye to me at the same time that he left his earthly body surrounded by our family.
The next few weeks were difficult for me. I had to deal with getting out of the hospital, home IV's, and memorializing Gamps. But I also would never doubt in God again.
By March of 2003 the years of not taking care of myself and the progressive nature of CF finally caught up with me. I needed my first "tune-up" the term used in CF for going into the hospital for IV antibiotics. It's routine for most people with CF, going in for a course of antibiotics a few times a year, but for me it was a strange and unusual world. I had been in the hospital a few times, for my appendix, putting in my feeding tube, and once while I was on a study so they could monitor my calorie intake and output while on a study for digestive enzymes.
While I was a little scared, I wasn't that off put by being in the hospital. It fell right at the perfect time. I was able to wrap up my last finals for the term then go straight to the hospital for spring break. Because the closest CF center is in Portland, I was isolated from all of my friends at the time, and it was over a 2 hour drive for my parents, so I spent most of my stay by myself. It was a bizarre time for me. I was anticipating the start of school, since it would be my first term in the four term education program that would enable me to earn my teaching licence. I had some stress with the application process but made it through and I was ready for all my hard work to start to take flight. Work was not going well for me, but I finally had a boss who understood and respected me, so things were looking brighter there.
My only entertainment while in the hospital was the TV. I love watching TV, but even the TV was in a strange time, as it was the very beginning of the Iraq war, something I deeply disagreed with and doubted highly the reasons as to why we were there. All of the channels were all Iraq all the time. I watched the first tanks roll out of Kuwait, I watched as the first reports of death, I watched because there was nothing else I could do and the news fit my sense of lack of control.
While I was in the hospital, my paternal Grandfather, Paul Lyda, was recovering from pneumonia. Gamps had been sick for many years with Parkinson's disease, and he and I had a close bond. My primary after school care for many years was found at my grandparents, and Gamps was always patient enough to sit for hours playing board games with me. He taught me how to play the harmonica, and I have many memories of sneaking sweets with him, much to my Grandmother's chagrin. He loved listening to me perform on the piano and sing... his special request was "Rocking Around the Christmas Tree" which I played in the heat of the summer, the rains of March, and with extra gusto during the holidays. Grandma and Gamps also took my sister and I to church every Sunday. While I had not attended for several years at this point, I had a foundation of faith in my life, but like many believers, I would sometimes doubt it all. I believed, but I wasn't sure how it all worked.
One night while in the hospital, I had a very unsettled feeling. I felt restless and that I was waiting for something to happen. The little voice in the back of my head was telling me that I had to stay up, that something was going to happen, that I needed to wait. I watched the TV, bored, glazed over eyes, but I knew that I couldn't fall asleep. It was the strangest feeling. What I did not know was that my Gamps had taken a sudden turn for the worst. Over 100 miles away, my family was gathering at his bedside, saying thier last goodbyes.
It was the wee hours of the morning. Suddenly, my room was full of light. The unease that I felt melted away. I felt a warmth and comfort. Then I heard Gamp's voice... "It's okay, I'm alright Tweetums, I've gone home to God". I felt his presence drift away from the room. The unsettled, waiting feeling was gone. I looked at the clock, noted the time, and fell into a deep sleep.
In the morning I was woken up by my mother calling. Before she could tell me something she knew would break my heart, I told her that I already knew. She wondered who told me, but I told her my story. Gamps came and said goodbye to me at the same time that he left his earthly body surrounded by our family.
The next few weeks were difficult for me. I had to deal with getting out of the hospital, home IV's, and memorializing Gamps. But I also would never doubt in God again.
More College
This is Chapter 9 in my history... rest can be found by clicking the links at the left.
It was very difficult to deal with the social issues that I had while in college. However, there was something much more difficult headed towards me, but that is still a few stops down the road, as there was good to talk about while in school, and a single moment that changed my life forever and made me never doubt my faith.
I loved almost all of my academic opportunities in college. Being able to take classes in the multitude of subjects that I was interested in was amazing. Having always had a strong aptitude in math and science, I took high level classes in meteorology, astronomy, and oceanography. I was recruited by nearly every math teacher I had to switch my major to math. While I knew I was talented in math, I wasn't interested, but knowing that other people recognized my gifts was awesome. Dabbling in choir was something that I wanted to do and never had the chance before, but did during my sophomore year, creating harmony with nearly 100 other talented students. I even got to take bowling as one of my PE credits. Nearly all of my classes came easily, but I also struggled some, something that was strange and unusual for me. I've always had difficulty with grammar and spelling, something that I have learned to be very effective in hiding or working around, but taking the three required classes in linguistics to get into the teaching program was pure torture for me. The concepts flew out of my head as soon as they were taught and the book made little to no sense to me. It didn't help that most of the professors were second language English speakers, so they had a hard time believing that a seemingly bright girl with English as a first language couldn't understand the material. There was one professor that I had most of the classes with that I repeatedly butted heads with. Between having her for linguistics and teaching writing, it was clear that we saw the world very differently. She was the type of teacher who taught by offering her opinion and way of doing things as the only way... while I knew that this was not true, and I was not afraid to challenge her. This is something that would later come back to me in unimaginable ways, but I will cover that later.
Summers during college I was offered opportunities to leave Oregon and work at summer camps. I spent the summer of 2001 working at Camp Vega in Maine as a nanny to the child of two of the employee's. The next summer I worked in California at Gold Arrow Camp as a drama counselor. Both camps opened my eyes to a world of riches that I was not exposed to before. The parents of the children paid more to send their kids to these camps than I earned in an entire year. I enjoyed my chances to see different pockets of the United States and people who lived lives far different than my own.
Also while I was in college I had the amazingly cool opportunity to be a support runner for the Olympic Torch when it passed through Salem, OR. I ran with 3 different torch runners, one of them being a September 11th widow who gave me the chance to run part of her leg of the relay. Having that torch, knowing how far that flame had been, and that I was the only person in the world holding on to it was very profound.
I also found a job that I was able to work my junior and senior years that also offered health insurance if I put in 24 hours a week. This was a huge deal as it took away stress that I felt about finding insurance coverage after I graduated and was dropped from my parents' policy. While working many hours a week would put great stress on me, I felt empowered by the fact that I was able to do it all.
By the middle of my junior year, the years of not taking good care of my health started to catch up with me. I often did not do my meds because I decided I was too busy. I think on some levels I felt that no one cared for me, so why should I bother to care for myself. I had nearly stopped doing all of my meds outside of my digestive enzymes that helped my process my food. This took a slow toll on my health, and by the time that spring break rolled around in 2003, I was sick enough for my first hospitalization. It was during that trip I had the most profound and faith assuring experiences of my life...
To be continued in the next chapter...
It was very difficult to deal with the social issues that I had while in college. However, there was something much more difficult headed towards me, but that is still a few stops down the road, as there was good to talk about while in school, and a single moment that changed my life forever and made me never doubt my faith.
I loved almost all of my academic opportunities in college. Being able to take classes in the multitude of subjects that I was interested in was amazing. Having always had a strong aptitude in math and science, I took high level classes in meteorology, astronomy, and oceanography. I was recruited by nearly every math teacher I had to switch my major to math. While I knew I was talented in math, I wasn't interested, but knowing that other people recognized my gifts was awesome. Dabbling in choir was something that I wanted to do and never had the chance before, but did during my sophomore year, creating harmony with nearly 100 other talented students. I even got to take bowling as one of my PE credits. Nearly all of my classes came easily, but I also struggled some, something that was strange and unusual for me. I've always had difficulty with grammar and spelling, something that I have learned to be very effective in hiding or working around, but taking the three required classes in linguistics to get into the teaching program was pure torture for me. The concepts flew out of my head as soon as they were taught and the book made little to no sense to me. It didn't help that most of the professors were second language English speakers, so they had a hard time believing that a seemingly bright girl with English as a first language couldn't understand the material. There was one professor that I had most of the classes with that I repeatedly butted heads with. Between having her for linguistics and teaching writing, it was clear that we saw the world very differently. She was the type of teacher who taught by offering her opinion and way of doing things as the only way... while I knew that this was not true, and I was not afraid to challenge her. This is something that would later come back to me in unimaginable ways, but I will cover that later.
Summers during college I was offered opportunities to leave Oregon and work at summer camps. I spent the summer of 2001 working at Camp Vega in Maine as a nanny to the child of two of the employee's. The next summer I worked in California at Gold Arrow Camp as a drama counselor. Both camps opened my eyes to a world of riches that I was not exposed to before. The parents of the children paid more to send their kids to these camps than I earned in an entire year. I enjoyed my chances to see different pockets of the United States and people who lived lives far different than my own.
Also while I was in college I had the amazingly cool opportunity to be a support runner for the Olympic Torch when it passed through Salem, OR. I ran with 3 different torch runners, one of them being a September 11th widow who gave me the chance to run part of her leg of the relay. Having that torch, knowing how far that flame had been, and that I was the only person in the world holding on to it was very profound.
I also found a job that I was able to work my junior and senior years that also offered health insurance if I put in 24 hours a week. This was a huge deal as it took away stress that I felt about finding insurance coverage after I graduated and was dropped from my parents' policy. While working many hours a week would put great stress on me, I felt empowered by the fact that I was able to do it all.
By the middle of my junior year, the years of not taking good care of my health started to catch up with me. I often did not do my meds because I decided I was too busy. I think on some levels I felt that no one cared for me, so why should I bother to care for myself. I had nearly stopped doing all of my meds outside of my digestive enzymes that helped my process my food. This took a slow toll on my health, and by the time that spring break rolled around in 2003, I was sick enough for my first hospitalization. It was during that trip I had the most profound and faith assuring experiences of my life...
To be continued in the next chapter...
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.
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.
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.
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 :)
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
TEETH!
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
Better
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!
I'll be posting more in my history soon...
Also no question Wednesday yesterday as no one gave me any!
Tuesday, February 5, 2008
Down
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 :)
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
Extraordinary
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.
Thursday, January 31, 2008
The Devil's Work
This post on Nate's blog really resonated with me.
I've been reading a number of blogs written by parents of kids that have cancer on a daily basis. I routinely come across comments that are to the effect that the cancer is the Devil's work or that it's his presence and God will remove it. This always deeply disturbed me both as a Christian and someone with a fatal illness.
I think of my CF as a challenge from God. To trust in him that I would never have more than I can handle. To use my CF to build strength to share with the world and also be humble enough to accept strength from others. If disease and hardship were the Devil's work, then that's saying I was born with him in me. That's not okay in my mind. To me I only see Satan working where people have abandoned hope... not in the faces of fighters who fight every day for health. Satan is found where hurt is purposeful, not a byproduct of a challenge.
Never once have I thought that CF was from Satan. I know it is in a plan far greater than my understanding, and while it is hard to accept, I work on doing so all the time, I do accept it to the best of my capabilities.
As far as praying for a miraculous healing. I don't. That may sound terrible, but I would never pray for a miracle just for me. If I were to wake up tomorrow without CF it would break my heart, because there would still be thousands out there with CF, suffering, dying, and not breathing free. I pray for God to guide the researchers to find a cure, to speed it along, but eradicating it from just me? That would be selfish, and that goes against my Christian and self values.
I don't know why I am posting this, but I feel that I need to. I want people to know where I am coming from, in all realms. I invite you to share your opinion. I do it with some trepidation, as I know some people will not agree with me. I am okay with that, but if you do, please do not try to change my mind. I would love to hear your views, but know that they probably will not change my ideas, but I also cannot say that they won't, because I am a strong believer in always leaving the possibility for change. Just remember to be respectful :)
Cheers!
I've been reading a number of blogs written by parents of kids that have cancer on a daily basis. I routinely come across comments that are to the effect that the cancer is the Devil's work or that it's his presence and God will remove it. This always deeply disturbed me both as a Christian and someone with a fatal illness.
I think of my CF as a challenge from God. To trust in him that I would never have more than I can handle. To use my CF to build strength to share with the world and also be humble enough to accept strength from others. If disease and hardship were the Devil's work, then that's saying I was born with him in me. That's not okay in my mind. To me I only see Satan working where people have abandoned hope... not in the faces of fighters who fight every day for health. Satan is found where hurt is purposeful, not a byproduct of a challenge.
Never once have I thought that CF was from Satan. I know it is in a plan far greater than my understanding, and while it is hard to accept, I work on doing so all the time, I do accept it to the best of my capabilities.
As far as praying for a miraculous healing. I don't. That may sound terrible, but I would never pray for a miracle just for me. If I were to wake up tomorrow without CF it would break my heart, because there would still be thousands out there with CF, suffering, dying, and not breathing free. I pray for God to guide the researchers to find a cure, to speed it along, but eradicating it from just me? That would be selfish, and that goes against my Christian and self values.
I don't know why I am posting this, but I feel that I need to. I want people to know where I am coming from, in all realms. I invite you to share your opinion. I do it with some trepidation, as I know some people will not agree with me. I am okay with that, but if you do, please do not try to change my mind. I would love to hear your views, but know that they probably will not change my ideas, but I also cannot say that they won't, because I am a strong believer in always leaving the possibility for change. Just remember to be respectful :)
Cheers!
High School
My History - Chapter 6
I started high school fresh from surgery for my feeding tube. I remember being very overwhelmed at first, but I soon feel in with a great group of friends. Some were old friends, some were new friends, but they were my circle. I still speak with many of them today, and still have very close relationships with some of them as well. We were not the popular kids, but we also weren't the dorkiest also. Nearly all of us shared some interest in theatre, so that is how we slowly came together. I also developed the unique ability to flitter between groups if I wanted. The popular kids didn't hate me, and I reached out to the social outcasts. As a person who has always been socially awkward, having a built in group of friends was amazing. I think that by the time I was in my Junior year I felt like I was finally okay socially. I'd lose this in college, but that is for a later chapter.
When I was in high school I started to fall into the trap that so many teen-aged patients hit - non-compliance. It started fairly simple, missing a nebulizer treatment occasionally and slowly morphed into I missed more than I did it. I would be perfect if I was on a study, but quickly lost it when I was not. I didn't see much affect on my health when I was good or bad, so it was hard for me to do it. Being an obstinate person, I have always tried to fight against what others told me to do, and in my mind, not doing my meds was a way that I could fight back and have some control over my CF. I lied to my parents that I did them and got really good about faking that I did do them. I also started to miss a lot of my chest PT. My health didn't fall though, at least not right away. I still stayed out of the hospital, I stayed active, I lived. I wouldn't see the affects of this until I was in college when I got even worse at doing my meds.
It was also during high school that the power of the Internet enabled me to feel like less of an outsider in the CF world. Because of research done in the late 80's they ended CF camp due to concern of sharing bugs with each other. Since I was never hospitalized, this severed my contact with people who had CF. The Internet gave me a safe way to meet others with CF without being exposed to germs. I saw so many that were far sicker than me, but there were also people just as healthy. I made friends, I lost friends, and I still have friends from that time. Sometimes the pain of losing people would cause me to pull away for awhile, but I always came back because it was somewhere that I could be understood without saying much at all.
By the time I graduated, I had accomplished several things that I wanted to. I finally left the country and flew on a plane down to Mexico. I participated in several theatre productions. I took piano lessons all the way up until I was 15. I mostly got good grades, earning a 4.0 my Junior year, and I graduated high school, knowing that I had enough money in scholarships to make going to college realistic. I knew that I wanted to be a teacher. I spent quite a bit of time in high school working in elementary classrooms and I knew it was something that I loved and wanted to do.
I will leave off here with my future looking bright. Up next, my Make-a-Wish trip and starting college.
I started high school fresh from surgery for my feeding tube. I remember being very overwhelmed at first, but I soon feel in with a great group of friends. Some were old friends, some were new friends, but they were my circle. I still speak with many of them today, and still have very close relationships with some of them as well. We were not the popular kids, but we also weren't the dorkiest also. Nearly all of us shared some interest in theatre, so that is how we slowly came together. I also developed the unique ability to flitter between groups if I wanted. The popular kids didn't hate me, and I reached out to the social outcasts. As a person who has always been socially awkward, having a built in group of friends was amazing. I think that by the time I was in my Junior year I felt like I was finally okay socially. I'd lose this in college, but that is for a later chapter.
When I was in high school I started to fall into the trap that so many teen-aged patients hit - non-compliance. It started fairly simple, missing a nebulizer treatment occasionally and slowly morphed into I missed more than I did it. I would be perfect if I was on a study, but quickly lost it when I was not. I didn't see much affect on my health when I was good or bad, so it was hard for me to do it. Being an obstinate person, I have always tried to fight against what others told me to do, and in my mind, not doing my meds was a way that I could fight back and have some control over my CF. I lied to my parents that I did them and got really good about faking that I did do them. I also started to miss a lot of my chest PT. My health didn't fall though, at least not right away. I still stayed out of the hospital, I stayed active, I lived. I wouldn't see the affects of this until I was in college when I got even worse at doing my meds.
It was also during high school that the power of the Internet enabled me to feel like less of an outsider in the CF world. Because of research done in the late 80's they ended CF camp due to concern of sharing bugs with each other. Since I was never hospitalized, this severed my contact with people who had CF. The Internet gave me a safe way to meet others with CF without being exposed to germs. I saw so many that were far sicker than me, but there were also people just as healthy. I made friends, I lost friends, and I still have friends from that time. Sometimes the pain of losing people would cause me to pull away for awhile, but I always came back because it was somewhere that I could be understood without saying much at all.
By the time I graduated, I had accomplished several things that I wanted to. I finally left the country and flew on a plane down to Mexico. I participated in several theatre productions. I took piano lessons all the way up until I was 15. I mostly got good grades, earning a 4.0 my Junior year, and I graduated high school, knowing that I had enough money in scholarships to make going to college realistic. I knew that I wanted to be a teacher. I spent quite a bit of time in high school working in elementary classrooms and I knew it was something that I loved and wanted to do.
I will leave off here with my future looking bright. Up next, my Make-a-Wish trip and starting college.
Question Wednesday #2
No questions....
So.....
I'll make one up!
Hey Talana. I notice that you use Daydee a lot as an Internet name. What is your reason behind that?
I use Daydee because that is the name of my imaginary friend from growing up. I don't know where I got the name from, nor could my mother ever get me to tell her because I would respond, "That's what she told me her name is". It's something that is unique, I've ran into one other user that uses Daydee. I hear it is her real name, named after her father's imaginary friend. I think Daydee may have cheated on me! She didn't let me know there were others before me! Daydee lived in a VW bus and liked bright colors. My Eugene area raising may have a little to do with that!
See how simple that was!
So.....
I'll make one up!
Hey Talana. I notice that you use Daydee a lot as an Internet name. What is your reason behind that?
I use Daydee because that is the name of my imaginary friend from growing up. I don't know where I got the name from, nor could my mother ever get me to tell her because I would respond, "That's what she told me her name is". It's something that is unique, I've ran into one other user that uses Daydee. I hear it is her real name, named after her father's imaginary friend. I think Daydee may have cheated on me! She didn't let me know there were others before me! Daydee lived in a VW bus and liked bright colors. My Eugene area raising may have a little to do with that!
See how simple that was!
Wednesday, January 30, 2008
Clinic
Today's clinics went exceptionally well... best clinic that I've had in years.
My weight was up about 5 lbs. I was 110 on the nose, been a long time since I've seen that number on their scales.
My lung function was the best it has been in 2 years.
My sinuses may or may not need surgery. We're going to try a course of steroids to cut down my inflammation and pain. If I need surgery, then I need it... I've been lucky to avoid it this long.
I have to set an appointment with the diabetes educator and start monitoring my sugars... joy of joy. Then a few weeks after that go to an endocrinologist (diabetes doctor). More trips to Portland for me!
The drive home was scary! Snowy most of the way, but it started sticking my last 30 miles or so home. People were driving crazy like, I couldn't see, and I REALLY NEEDED TO PEE. All of this made a very stressed Talana who took a nap as soon as she got home.
I'm very happy over how my clinics went :)
My weight was up about 5 lbs. I was 110 on the nose, been a long time since I've seen that number on their scales.
My lung function was the best it has been in 2 years.
My sinuses may or may not need surgery. We're going to try a course of steroids to cut down my inflammation and pain. If I need surgery, then I need it... I've been lucky to avoid it this long.
I have to set an appointment with the diabetes educator and start monitoring my sugars... joy of joy. Then a few weeks after that go to an endocrinologist (diabetes doctor). More trips to Portland for me!
The drive home was scary! Snowy most of the way, but it started sticking my last 30 miles or so home. People were driving crazy like, I couldn't see, and I REALLY NEEDED TO PEE. All of this made a very stressed Talana who took a nap as soon as she got home.
I'm very happy over how my clinics went :)
Monday, January 28, 2008
:) - Because I'm Random Today
I don't know how much I have to say today, so these words are just pulling out as I think of them...
First thing - I don't have ANY questions for question Wednesday. Feel free to comment them or email me at the email address in my profile - which I updated :) - because I want this blog to be as interactive as possible.
Speaking of interactiveness brings me to...
Second - I love, love, love the comments I get on here. Each time I get an email letting me know that I have one I get all excited. Come, comment, interact.
I will be doing my high school chapter in my history next. I'm having trouble thinking about how I want to write it so it's not easy for me to do. I have college and post college all written in my head, but high school, I don't know, just not coming to me.
I've enjoyed the snow. We may get more tonight. Which makes it really dicey to get to Portland for my clinic tomorrow. Matt and I may head up tonight and just stay in a hotel room. I'll make the call when I watch the evening news here in a bit.
First thing - I don't have ANY questions for question Wednesday. Feel free to comment them or email me at the email address in my profile - which I updated :) - because I want this blog to be as interactive as possible.
Speaking of interactiveness brings me to...
Second - I love, love, love the comments I get on here. Each time I get an email letting me know that I have one I get all excited. Come, comment, interact.
I will be doing my high school chapter in my history next. I'm having trouble thinking about how I want to write it so it's not easy for me to do. I have college and post college all written in my head, but high school, I don't know, just not coming to me.
I've enjoyed the snow. We may get more tonight. Which makes it really dicey to get to Portland for my clinic tomorrow. Matt and I may head up tonight and just stay in a hotel room. I'll make the call when I watch the evening news here in a bit.
Sunday, January 27, 2008
SNOW
I love snow. As a girl living in the Willamette Valley, some years we get it and others we can only see it up in the mountains. Growing up in the hills above Cottage Grove, I'd often have snow when the lower valley didn't. My parents have already had snow a few times this winter, but I got nothing, until this morning :) Silly weatherman was only predicting rain with some snow in it. My 5-6 inches proves him wrong!
My Name
Since I have several readers that do not know me, thought I would provide a pronuciation guide for my name:
Talana = Tah-la-nuh.... or the Ta in tall, the la in lawn and the na in fauna.
My father knew a little girl named this, a family friend, and always really liked the name and wanted to name a daughter that someday... so here I am :)
Talana = Tah-la-nuh.... or the Ta in tall, the la in lawn and the na in fauna.
My father knew a little girl named this, a family friend, and always really liked the name and wanted to name a daughter that someday... so here I am :)
Friday, January 25, 2008
Starting High School - Feeding Tube
My History - Chapter 5
As the summer ended approaching my freshman year of high school, it became more and more obvious that I was incapable of gaining weight through diet alone. Despite eating around 3,000 calories a day, I was stuck at 4'7" and about 72 lbs. The decision was made that I needed a feeding tube. The type of feeding tube that I was to get, a G-tube, is placed in the stomach, then punches through the stomach wall and allows access on the outside. It looked very much like the plug that is on a blow up beach ball... leading me to joking that I was the world's most life-like blowup doll. I had the tube placed the last week of August 1996. The tube allowed me to eat all day, then hook myself up to calorie rich formula at night and have it run into my belly all night long.
A feeding tube is not unusual in CF. While I do not know the exact number of how many of us end up getting one, I do know that girls, especially those who are starting puberty, often need help to gain weight. I was one of those girls. Without the tube my health would have dramatically declined. Lung function, the ability to breathe, is directly related to weight.
The impact on my weight and well being was almost immediate. I rapidly gained weight and I stopped losing lung function, hanging out at 70% of what is normal for several years. While 70% offers some impairment, daily life was hardly a challenge. I handled the plug hanging out of my stomach with humor. Since my peers knew about my CF (a grace and a blessing of growing up in a small town) I rarely was teased, but I also was not brave enough to buy a bikini until I had the tube removed in the Summer of 2001, after I proved that I could maintain my weight on my own.
I am grateful for the health that my tube gave me. It changed me significantly on the outside. Although the site never healed properly, and I was often in pain if I rubbed it wrong, it was worth it. I may need another tube again. My weight has been hard to manage over the last two years or so. I don't know what I think about this now that I am married and bringing a feeding tube in affects both me and my husband. While we both are committed to doing everything to make me healthy, I am not sure if getting a tube will help that much this time. I am trying my hardest to gain weight on my own so that I don't need a tube and have had limited success. We will see where I am at when I go to clinic on Tuesday... prayers are needed.
As the summer ended approaching my freshman year of high school, it became more and more obvious that I was incapable of gaining weight through diet alone. Despite eating around 3,000 calories a day, I was stuck at 4'7" and about 72 lbs. The decision was made that I needed a feeding tube. The type of feeding tube that I was to get, a G-tube, is placed in the stomach, then punches through the stomach wall and allows access on the outside. It looked very much like the plug that is on a blow up beach ball... leading me to joking that I was the world's most life-like blowup doll. I had the tube placed the last week of August 1996. The tube allowed me to eat all day, then hook myself up to calorie rich formula at night and have it run into my belly all night long.
A feeding tube is not unusual in CF. While I do not know the exact number of how many of us end up getting one, I do know that girls, especially those who are starting puberty, often need help to gain weight. I was one of those girls. Without the tube my health would have dramatically declined. Lung function, the ability to breathe, is directly related to weight.
The impact on my weight and well being was almost immediate. I rapidly gained weight and I stopped losing lung function, hanging out at 70% of what is normal for several years. While 70% offers some impairment, daily life was hardly a challenge. I handled the plug hanging out of my stomach with humor. Since my peers knew about my CF (a grace and a blessing of growing up in a small town) I rarely was teased, but I also was not brave enough to buy a bikini until I had the tube removed in the Summer of 2001, after I proved that I could maintain my weight on my own.
I am grateful for the health that my tube gave me. It changed me significantly on the outside. Although the site never healed properly, and I was often in pain if I rubbed it wrong, it was worth it. I may need another tube again. My weight has been hard to manage over the last two years or so. I don't know what I think about this now that I am married and bringing a feeding tube in affects both me and my husband. While we both are committed to doing everything to make me healthy, I am not sure if getting a tube will help that much this time. I am trying my hardest to gain weight on my own so that I don't need a tube and have had limited success. We will see where I am at when I go to clinic on Tuesday... prayers are needed.
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