What Hurts the Most...

I really, really hate this disease sometimes.

Sure, it robs me of my future, my breath, the time out of my day to do treatments, and makes far more decisions for me than I do the older I get.

But that is not what my true passionate hatred is reserved for.

That comes from when I watch people with CF, especially those that are significantly younger than me. Today Haley Palmer passed away from complications of CF at only 12. A year ago she was going on vacation, playing soccer, and living life to its fullest, the way any CF patient learns to live by virtue of their illness. In a short time her lung function tanked, rose again, then almost inexplicably tanked again. Usually lung function decline does not happen that fast in CF, but it doesn't matter... the killer that lives within me and thousands of others took another brave, and all too young fighter. As I spent the afternoon, reading journal entries about her life, she was flying up with the angels to God.

I hate this disease with the heat of a thousand suns tonight. It turns us into fighters, makes us love life, appreciate moments, be strong... but then it also always takes in the end. I'm okay with my fate that I'll probably die with CF... but Haley? She didn't even get the chance to go to High School, get a transplant, or reach the age of adulthood. I can't say that she didn't get the chance to grow up... CF forces kids to grow up in so many ways... yet we still are able to live, laugh, love, and have pure joy, something that many adults lose with the passing of the years.

I don't regret having CF. The lessons it's taught me are numerous. But even knowing that, I still am hurting tonight.

Lazy Days but Relaxion Hard to Find

I know it's been awhile since I've updated. I apologize... in part, it's not because that I've been too busy, or too tired, or had nothing to say... I just haven't. It's hard to explain. In many ways I feel like I'm stuck in Groundhog Day. Each day with ever so slight changes, but the script plays out with the same arch's day in and day out.

I wake up in the "morning", rather it be morning at 11:30 am or 2 pm. I drag myself from bed, usually try to motivate myself to find food and do my meds. Some days I succeed, others I fail. If I have something to do that day, I head out in the world. Sometimes those days are amazing and great and happy. Others I don't feel good and they are painful and dreadful. I never know what I'll wake up to.

By 6pm I've usually ate, done meds, and possibly gone out for the day... or I've spent the day watching TV in bed. I start to think what I'll do for dinner for Matt and I, possibly get up and start cooking, or other days resign myself to something quickly thrown together as that is all the energy I can muster.

Evenings is when I'm usually at my best. I watch TV with Matt, I become more animated, more energized. I've always said I'm at my best after 7pm. I'll take my bath, do my meds, and feel good and happy for a few hours.

Then into the wee hours of the morning 1,2, 3 A.M., Matt and I curl up in bed, read, and go to sleep to start another day.

What's special about this script? It's full of my trying to accept me. Figuring out what I am still capable of doing. Pushing myself to do what I can. But struggling deeply to find acceptance when I can't do something. That's been the story of my life for the last year or so. I've always been so capable despite my health. I was able to exceed so many expectations of me. Now, I can't. Some days picking up clutter in the house is enough to wipe my energy for the day. And that is so hard for me to take. I don't like it, I don't want to accept it, but I really don't have a choice. I lash out at those that help me, I've never liked help in the first place, but now the fact that I need it hurts me deeply because it makes me realize how much I've slowly lost. It's said that you don't miss things until they are gone. Slowly, my physical abilities have wained... and I often question when things disappeared. Because they left me so slowly, I sometimes don't realize how much I can't do until I try and fail.

Given all that, I'm still trying and fighting. Really there is no choice. I'm working on accepting what I have... valuing it because things could be worse. I'll forever be grateful for how long my CF held off. What I was able to do that so many others were unable to do. I'll fight jealousy at those who still can operate like a normal person.

Quick Prayers and Blessings:

Nate, Tricia, and Gwyneth are home on the Outer Banks of North Carolina. Their story still amazes me. All the blessings, the grace of God, and strength in the darkest times.

My Grandmother is going in for gall bladder and hernia repair surgery on Monday. I'll be taking care of her for the most part. While I know that it should go fine, I'm naturally worried. She's 82, so any surgery is not taken lightly. Prayers are needed for her. I will try to be as nurturing as I can, something that does not always come easily to me.

Lastly, I leave you with a video from my beautiful Eva. Watch it. At 8 minutes, it is long, but so powerful. If you want an idea of what CF is like, then watch. Eva is living beautifully, thanks to the gift of life that she received last Fall.

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 :)

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!

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 :)

Being Eight

This is chapter 3 in my history.

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.

Diagnosis to Eight

My History - Chapter 2

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.

From Birth to Diagnosis

This is post #1 of my history. :)

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 :)

My Contract With My Readers

So tonight I was thinking about where I want to take this blog... its purpose. I've known from a young age that one of my most powerful tools in combating CF was to share my story. I've found amazing support, generosity, friendship, and love in doing so. This blog is going to be my mouthpiece... a window on the world of cystic fibrosis. I'm at a point in my life where I am teetering on falling into increased sickness, and I want to take as many people down that rabbit hole with me. I've had incredible experiences in my life... many of them directly due to my CF. I will share the past here. Let the world know that CF kids can grow up strong and happy, go to college, live out their dreams. Let the world know that we are still dying, that far too many dreams are cut short, that life is full of pain as well as joy.
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.

A trip to the pharmacy...

So today I got to do my big visit to the pharmacy. I make several trips a month, but there is usually one big one where I pick up my auto refills and any over the counter meds I need. Today was it....



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!

Talana

Coming Soon

I will be working on this blog soon as a chronicle of my life with CF. As I prepare for declining health and eventual transplant I find it important to have a place for people to come and watch my progress and support me. I will still maintain my live journal, but it be moving towards a friends only setup.

Talana