Thursday, January 31, 2008
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 :)
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'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
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
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
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
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.
Thursday, January 24, 2008
After I understood what CF meant, my life returned to normal. I stayed healthy and out of the hospital. Besides the occasional bout with a lung infection that required oral antibiotics, I seemed perfectly normal.
I spent nearly every summer playing softball. I was never the best, but I knew the game and often was put in by the coach. I found my niche at pitcher and shortstop. I was fearless with the ball coming at me and would dive on the dirt to catch it. I taught myself to pitch, and prodded the coach into watching me. While I wasn't fast, I was very accurate and had good control over my pitches. Because I had this degree of control I pitched often, even though it seemed sometimes to take an hour for my pitch to get to the plate. I also played basketball for awhile, but I quit in early middle school as the girls began to grow taller, and I, already short, stayed behind. Because of the digestive issues with CF, we often experience delayed puberty and often do not reach our growth potential because of malnutrition. I already come from a short family, so having those issues kept me as one of the smallest and shortest in my grade.
It was also during this time that I started to develop a love for theatre. I always loved attention, so it seemed like a natural step. We have videos of me from when I was a young girl demanding people pay attention to what ever little song I happened to be singing... bowing after a group performance like it was all about me. I did my first play at the community level when I was 11 or 12. "How the Grinch Stole Christmas". It was a mostly kid production, but as being one of the older kids, I took a leadership role and relished being the first on stage each night. I was hooked. Theatre continued to define my life for many years.
I struggled some socially in middle school, as so many do. I've always been a little social awkward, and at an age where that is exacerbated, I felt like I struggled. I had a few close friends, Wes, Julie, and Jessica, and they helped me through. While we are no longer close, I thank them for keeping me from drifting off into social oblivion.
CF wasn't a huge factor in my life for those years. I started doing my first medical trials, taking medication that they were trying for CF care. While people questioned rather a kid of my age should be on trials, my parents and I agreed that we needed to do what we could to improve my health and other CF patients. Life is inherently risky. While on a medical trial, your health is more closely monitored than normal. Also, all the trials that I have been on have been different formulations of proven medications, making it be very little risk to me.
My weight issues, that got me diagnosed in the first place, started to show back up as I went through middle school. While I was always skinny, I started to fall further and further behind for my height. I began pushing in as many calories as possible, snacking through the day, and being very vigilant with my digestive enzymes. Middle school gave me the freedom to carry my pills with me and take them as I needed. Despite being very open about having CF and not hiding it from my peers, a few rumours started to crop up that I was bulimic and taking diet pills when I was really taking my enzymes. I mostly ignored these rumors, but would set people straight on the facts if I knew they were thinking incorrectly. This only lasted a short time though, because soon after the rumors started, a popular boy, a year ahead of me, came up when I was taking my pills at the water fountain. He asked me what they were for and if I was bulimic. I told him the real story, and he told me that he would make sure that the rumors would stop and they did. My peers were always pretty good about handling my CF, but some of my teachers were not. That's a story for another day when I talk about teaching.
I am going to stop right before I enter high school. There is a reason for this that will be revealed in the next chapter.
Wednesday, January 23, 2008
This week's question comes from Moma Grizly:
"What does the vest do? I've heard about CF patients being "pounded" on their backs - is that what the vest does?"
CF patients need some sort of regimen of airway clearance to clear the thick sticky mucus in our lungs that make it hard to breath and promote infection. As a whole, this is referred to as chest pt, and can take a few different forms.
The vest (look at last post for a picture) does the basic work of being pounded on. "Pounding on" refers to the hand or manual percussion therapy that is used to clear the lungs of CF patients. A trained person pounds on the chest with either their hands, a cup shaped piece of soft rubber, or a electric percussor. The therapy loosens the sticky mucus and makes it easier to cough out. It is very uncomfortable as the chest needs to be hit with some force to make a difference. Also the patient must lay in a number of positions to facilitate the airway clearance.
The Vest is very similar to this, but does not require another person to help me. The vest fills with air, then the air vibrates, causing the lungs and airways to vibrate, loosens the mucus and causes coughing. It's annoying but far less than having it done by hand. I still have manual therapy while in the hospital, but use my vest while at home, 20 minutes in the morning and 20 more at night. I like the freedom to still watch the TV, be on the computer, or even talk. There may be a video coming with how funny I sound while on the vest.
There are also other techniques of airway clearance but the vest is the one that has worked best for me and that I have been most willing to do. However, the vest is very cost prohibitive, and before insurance retails for $16,000. Thank the Lord for insurance!
I should be able to publish the next chapter in my history tomorrow, but now off to sleep!
Tuesday, January 22, 2008
Doing my vest, sucking on my nebulizer, and letting the words flow out of my finger tips.
Monday, January 21, 2008
and in that time....
I've gained 6 lbs. Something I've needed to do forever. I need to gain more, but I'm on my way. And I thank all of you. It doesn't matter if you prayed, if you thought good thoughts, or were just silently here. You all helped.
Sunday, January 20, 2008
The eigth year of my life had was a major turning point. In the few summers prior I had went to CF camp. A week up in the mountains with kids like me. Kids who took pills with every meal, kids who got thumps, kids who were thin as rails. I was one of the healthiest there. I had a window on what my future may be. I saw kids who took more pills, had CF Related Diabetes (CFRD), and the most fascinating to me, kids on nebulizers. I remember in my childhood naiivete, telling my parents that I would never need them, that I was going to stay healthy forever.
My parents never sugar coated what CF meant. Unlike so many others that I know, my parents never hid any facts from me about CF, not even the mortality factor. I knew CF was deadly. I knew I would have it for life. I knew that I wouldn't get old. But I was also eight... and things like that were beyond my level of true comprehension. Even though I knew, but didn't understand, I am forever thankful that my parents didn't hide anything from me. There are too many that found out CF is fatal from a teasing kid, an encyclopedia, or some news article. I got it from the people I love and trusted the most. But even that didn't make the blow of understanding come easily.
I don't even remember when it happened. Only that I was eight and that I was in third grade. A young girl that I had met at camp that summer, Amanda, was very sick, along with her sister. Amanda was my age, but her and her sisters time on earth was short. I don't know which one died first, or how close together that they both died, but I know one died closely after camp that summer. I think it may have been Amanda. Being so incredibly close in age, the same illness... it hit me. It took awhile... I'm not even sure how much longer after I found out... but I broke down. I remember very little about this time of my life. When I try to remember all I see is blankness and feel fear, panic, and sadness fill my chest. So I will recount some of what my mother told me about what happened.
I was at school, when suddenly I broke down crying. My teacher figured out that it was something unrelated to school and called my mother. I was scared out of my mind. The reality of "fatal" had hit me. I may have even went home from school that day. For about three weeks the usual bubbly, happy, loud Talana was gone. She was weepy, sad, despondent. I cried a lot, I needed a lot of hugs and quiet time. I was a shell of myself. School was hard, home life was hard, I stopped both inside and out. I now understood phrases like "average life expectancy of 25", "progressive", and "incurable". Before I knew them... then I understood. It was a lot for an eight-year-old.
The last part though, I remember. It was a sunny day. The sun was setting between the trees over the creek. I was standing in our driveway looking at it. I looked up at the sky. I turned and watched my father work in the garden, heard my mother in the kitchen. And suddenly it was okay. I couldn't change any of those phrases that made my heart so heavy. I couldn't bring back any of the children that had died of CF. But I could live. I could run, play, laugh, smile, and love. I would be okay... I was alive, so I may as well live. I walked up to my dad in the garden and gave him a hug, full of life. It was my way of telling him that I was okay.
Morbidity is a concept that shouldn't be so profoundly understood by an eight-year-old child, but that is the reality of CF. I also remember not being able to remember the past few weeks right after I "woke" up. My mind blocked it from me almost immediately. A blessing, maybe. I'm not sure.
I can't say that I've always had a rosy attitude since then... but in moments that profoundly changed my life, that ranks high. It's a part of me, something that CF caused that made me different than everyone else. As traumatic as it was, in some ways it was also a gift. I understood how precious life was. It changed how I approached so many things. It made me a smarter person.
After it was discovered that I had CF and was placed on digestive enzymes, my health greatly improved. My parents also began to search out all the information that they could about Cystic Fibrosis. They also studied our family history to see if there were any other relatives that had CF. While they did not find any other official diagnosis of CF, they found that my Grandpa Paul had a baby sister die as a toddler. She died of "failure to thrive", with very similar symptoms to CF. Being the 1930's and living in Idaho farm country, CF was not known. But with the revelation of my diagnosis, we are nearly sure that I am not the first Lyda baby to have CF. My mother also spent a good deal of time at our small town library trying to find all the information she could about CF. Being a small town, before the information age, most of the stuff that she came across was out dated and gave an even more grim prognosis for her baby. As I had yet to show lung involvement, the doctors held some hope that I may stay healthier for awhile, they also gave grave information to my mother. Average life expectancy was 18-21. Expect frequent hospitalizations, declining health... a life time of struggle.
But typical CF was not to be my fate. For the first ten years of my life, except for my skinny stature, there was little outside clue that I had CF. I was never hospitalized, my lung infections were infrequent and treatable with oral antibiotics. It was always difficult to keep weight on me, but my voracious appetite helped with that.
My parents also threw themselves into fundraising. It was shortly after my diagnosis that CF went from a disease that few knew about to one in the minds of the public consciousness with the release of the book and movie "Alex: The Life of a Child". While many CFers are uncomfortable with the portrayal of Alex in the book I thank Alex for saving my life. CF became a known disease and the money that poured into CFF got the ball rolling on life extending research. Below is an image from when my parents hosted a bowl-a-thon to raise money for CF when I was a toddler.
As I began to get older may parents began to understand that they had a smart, feisty little girl on their hands. While my sister was the easy, laid back child, I was stubborn, loud, uncooperative child. I also was a quick learner, who began reading when I was four. Also when I was for, we had my first semi-related CF event. In the Spring of 1987, I began to experience stomachaches. Because of the difficult digestive system of the CF patient, and being someone who had a lot of digestive issues, this was not out of the realm of expectation. I had a lung infection and was put on oral antibiotics at the time, but nobody though that the two things were related. After about a week of me complaining my belly hurt, then laying down and have it feel fine, the true problem was revealed. On my parents 13th wedding anniversary, I got up and went to preschool, came home and ate lunch, then went down for my afternoon nap. A short time later I awoke screaming in pain with an elevated temperature. My mother rushed me to the doctor, were we got in quickly. All it took was one quick touch on my belly (and the loudest most pain filled moment of my life) before I was diagnosed with a "hot" appendix. I was moved the couple of blocks to the local hospital where I had emergency surgery to remove it. Although unlike a normal infected appendix, mine had essentially rotted. What happened was my appendix was infected, probably heading towards bursting, when I was put on antibiotics for the lung infection. They think that the antibiotics had killed the infection, but the infection had killed my appendix, leaving it to die inside of me. Because of this, it was as serious as if it had burst. I spent a week in the hospital and still have a large scar to this day.
I attended preschool and Kindergarten, meeting friends who I still keep in contact with. Below is a picture of me from my Kindergarten graduation with my "boyfriend" at the time, Leslie.
Around the time that I started first grade, I also started two things that I would be involved in for several years... piano and softball. I played several sports during my elementary years, but softball was always my favorite. While I was never the most athletic, never the quickest, I made sure that I knew the rules and how to smartly play my position. Because of that I spent a lot of time on the field, especially at short stop and pitcher. Where I was lacking in speed and athleticness, I made up for in accuracy. I made due with what God gave me and used it to my full talent. I also began the Piano, playing on the piano that had been in my family since the early 1900's. It is one of my most cherished possessions, one that is now in my home. I took lessons for 10 years and now play for fun. I am stopping this entry at age 8, as that is when my life took a turn due to my CF. Chapter 3 will focus on my life changing up until my teenage years.
Saturday, January 19, 2008
So last night... I drank the last pepsi in the house.
So I'm quitting a several year addiction. As much as Pepsi was not good for my pancreas, for my teeth... they try to pack as many calories on to us CF kids as possible. Now I get to find them in other places.
I have a rip-roaring headache today. I know some if it is my sinuses acting up... another CF related issue. I'll be going for a consult with my sinus doctor and probably setting up surgery on the 30th. I also get to see the CF doctors on that day. Combining both days into one as it is a two hour drive up to Portland, the closest CF center.
Thanks for all the visitors. It excites me to watch the little dots appear on my map. I've always been fascinated by geography and places. I spend a lot of time looking at maps. Have since I was little, so watching the dots appear makes that side of me happy. It also gives me a feeling of support.
May post again later tonight... probably another chapter in my history.
Friday, January 18, 2008
I'm not "diabetic". My fasting blood sugar is normal. However my 2 hour level after the sugar drink is high... meaning I'm "glucose intolerant". One step away from diabetic. Basically my pancreas is lazy. It will process sugar, but I stay at a high level for awhile, putting a lot of strain on my body. So I get to cut out my love... Pepsi. I can switch to diet, but ooooo my Pepsi. While I don't have to switch to a full diabetic diet, I do have to be more careful. May start monitoring my sugars as well... the doctor team is going to talk that over. It probably has a lot to explain for why I have had such trouble gaining weight.
I'm just mad right now.
I was born on July 12th, 1982 to my parents Mary and Terry. They had tried for several years to get pregnant with me. My mother had severe endometriosis, which was discovered as she struggled to get pregnant with me after getting pregnant quickly with my older sister, Heidi, who was born in 1975. Like so many other families, my parents had no known family history of CF so they had no idea that they were carriers.
At first I appeared perfectly normal. A 7lb 15oz baby girl. My parents brought me home and started to settle into life with two daughters.
It soon became obvious that something was wrong with me. I was not gaining weight. They tried switching me to formula, then to a high calorie/fat formula. All of these seemed to make a small change, then I went back to not gaining weight. My mother finally began documenting the amount they were feeding me, and when the doctor saw this, he knew that something was seriously wrong.
This picture was from right before I was diagnosed. My doctor ordered a litany of tests. The only one that came back positive was Cystic Fibrosis. I wasn't even 6 months old yet. After I was put on a proper diet and digestive enzymes, my health turned around. That will be the next chapter :)
I want to share this all. And I want to share it with as many people as possible. Please link me, please comment (Thank you Meredith, my first comment. Your prayers are appreciated). As a teacher I know that the world is changed one person, one lesson, one iota at a time. This is the first drop.
Thursday, January 17, 2008
Please comment, I'd love to hear the people that are here! :)
time to pick up my Ultrase 20's (digestive enzymes (and harrass the staff about billing it right to get my free weight-gain shakes and vitamins)) iron tablets (sometimes anemic), albuterol (keep those airways open), advair (contorl the airway inflamation), flonase (help those sinuses), and birth control (if you don't know what that's for talk to your mommy). I already picked up zantac and cranberry tablets when I visited to order these meds. Still waiting on my doctor to send in a refill on my miranol (appetite stimulant). The kitty was not picked up at the pharmacy :P . That is our baby Lizzie, checking out what mom brought home. This trip was under $200... thank the Lord for insurance. Thank the Lord even more for insurance free for spouses through my hubby's work.
This is my med area. In front is my basket of all my non-refrigerated meds. There is a lot of them. All the ones listed above plus my allergy tablets, aleve, and my 7% saline. Behind the basket is my nebulizer, all ready to go with my 3 nebulizers. One for my pulmozyme, one for my TOBI, and one for my 7% saline. Next to them is my vest machine. The vest vibrates my lungs to help loosen the mucus. I do my pulmozyme once a day, every day. It helps thin the mucus in my lungs. I do it for the first 10 minutes of my evening vest treatment. During the last 10 minutes of my morning and evening vest I do my 7% saline. This makes me cough violently because the salt water is making my body pump water into my lungs to correct the salty environment. This thins the mucus and makes me cough. Last I unhook the vest and start my TOBI which I do morning and evening, one month on, one month off. It is an antibiotic that helps control infection in my lungs. I will soon do a picture tour of doing my meds :)
Comments and questions are loved and welcomed!