Quick Update

I had a great weekend, a great birthday, and a good time all around. I'll post more later, but right now I'm recovering from my very full weekend!

Happy Birthday To ME!

Exactly 26 years ago, at the moment this blog was posted, I was born! I am 26 :) Any birthday is a huge celebration for a CFer. I also send birthday wishes to my grandma. Even though she is not doing well, and this will quite possibly be her last birthday, she's my special, birthday sharing Grandma.

Time to go play on the beach!

Family Reunion

Right now Matt and I are on our was to Pacific City, OR to my yearly Lyda family reunion. A yearly tradition that I've grown up with, always the second weekend of July, and except for a brief break, it's almost always at the coast. This is the spot that 3 years ago Matt proposed to me. Below are a few pictures of what I'll be seeing this weekend.

Summer

I love summer in Oregon. Sure, we're known for our rain. The dreary days stretch out endlessly, but that is only in the winter. When summer comes around, the clouds run away, the sky turns blue, and the days warm. Sunny day after sunny day stretch out, lasting the entirety of July and August. Over two full months with only a trace of rain here and there. And while it may get warm, it hardly ever gets hot like so many other places in the country. Triple digits are rare, maybe a few times a year, and the humidity almost always stays blissfully low. A "muggy" day here would be laughable by the standards set by the rest of the country.
I never realized my favorite part about summer here though until I spent summer days in Maine, South Carolina, and Florida... my favorite part, is that every night brings relief from the warmth of the day. The crystal clear skies bring in cool air. Houses are thrown open, welcoming the coolness. It's almost average to have a low in the 50's, even in the heat of August. Air conditioners are rare in homes here, because of our cool nights. If you open up the house at night, and close it up in the morning, it will stay livable most days.
The landscape also stays fairly green, even though it doesn't really rain. Our months of rain before it creates a high water table, that is fed all summer by the melting snow from the mountains.

Glorious...

What do you think?

So what do ya'll think about daily 3PM posts that I have been doing the last several days? Do you mind that some posts may have been written a few days before?

Hazard

I know I have not introduced many aspects of my daily life... so here is the first..

This is my baby boy Hazard.




Right before Matt and I were married, we decided that we wanted a kitty for me. He already had Lil' One, who was devoted to him for life, and while she accepted my existence, she definitely was not a kitty I could call my own.



After much difficulty with the Willamette Humane Society in Salem, we decided to go to the Oregon Humane Society up in Portland, to see what they had. We already decided we probably wanted a kitten. While we are fine adopting older kitties, we wanted someone small to make the adjustment on Lil' One better. We showed up to the very busy Humane Society, as there was a mass adoption of Labradoodles going on. All of their kittens were spoken for, except for one black baby. We asked to visit with him and were escorted to a private viewing room. Soon they brought the kitten to the room, placed him down, and left, giving us a chance to interact with him. However, the little fur ball was not interested in us at all. He was not scared of us, but would not even feign interest in the toys that we dangled, did not want to be petted. No, instead this kitty needed to check out the room. He sniffed every surface, wiggled into all the corners, and got the lay of the room. As soon as he did, he switched into an entirely different kitty. He became playful, loving, and like any other friendly kitten. This personality quirk of fully exploring his surroundings when changed became the first of his many endearing traits.



That very first night, he taught us his name. We were driving him own, on a rain drenched, wind swept, dark night that signals the start of the stormy season in Oregon every late fall. The freeway was covered in water, visibility was bad, and the wind shifted the car like it was a small child's sailboat. Hazard was restless in the car, again showing his need to explore every surface inch of his new surroundings. He climbed out of my reach in the passenger seat, up Matt, the driver's shoulder, and out on his head. Two paws onto Matt's hat bill, chaos broke lose. Suddenly, in slow motion, I watched as the hat fell to cover Matt's face, his glasses tumble into his lap, quickly followed by a black furry streak. I grabbed the wheel with one hand, picked up the cat, popped the hat off of Matt's face, then handed him his glasses with a flair and coordination that I can only exhibit in situations where my livelihood is on the line.



After we were safely piloted by a driver who not only no longer had a hat across his face, but could also see with the aid of his glasses, I turned my attention to the small black cat. Exactly what type of cat would try to kill the people who just saved him? He didn't even let us get home before he tried to kill us! You would think that cats would know that part of being adopted was not to kill the adoptive parents... shouldn't they have a class or something? I held his face firmly in my hands and looked deep into his eyes.....

"Hey little guy, you can't be a road hazard".

As soon as the word hazard left my lips, the cat lunged forward towards my face, head butting me with a force of a big bear hug. I pulled him back and looked at him again...

"Hazard?"

He responded with another emphatic head butt, and another, and another. We had found his name... and another of his endearing qualities. The number of times that head has butted against mine are numerous. Soon we found that he communicated by varying his meows, able to express exactly what he thought about any situation. Him running in one morning, meowing a blue streak, telling me that Matt dared to feed them pate food was probably one of the funniest moments of my life.



My sweet, fuzzy, wild Hazard. There is no question in my mind how much he loves me... even if he did try to kill me!

Maybe They'll Still Know

First, I've added a couple more links on the right sidebar. Please visit them and show the great support to other blogs like you show me!

I've lately noticed a little habit of mine that I'm not sure how it started, and while it may have the greatest of intentions, probably looks a little funny.

There is a an interesection of two highways in town where it can be very difficult to get on the westbound highway, especially at rush hour. It's a difficult place to get on at, merging into traffic, hoping someone will let me in. You have to usually hope that people will give you a gap, and slip your car into it. Being a friendly person, I always wave once I've merged in, in a sign of my apprecation. That's normal, friendly thing to do. However, I've noticed that whenever I'm in my car alone, I mouth thank you while I wave. No one hears me, but I swear, they won't be happy with me if I don't say thank you! Yes I know the can't see my mouth, but I feel really guilty if I don't mouth it!

Maybe the universe tells them for me!

This quirk brought to you by the fabulously quirky me!

Across the Country 2007 - Part 2

After starting our drive in Eugene on Sunday, July 8th (actually you could say we started at the Pacific Ocean the day before), we reached my sister's place in Kentucky on Tuesday morning. Not bad time at all! Heidi, my sister, lives in Kentucky, where she attends Asbury Seminary where she is working for a degree in mission work. Matt and I spent most of the day sleeping in a real bed. After we felt more rested, we went out to dinner, then to the Harry Potter Chamber of Secrets Premiere. Matt and I slept again, ready to leave on Wednesday, make the final push to South Carolina, and get there before day's end, so we wouldn't spend Thursday the 12th, my birthday on the road. Here are some shots from this leg of our trip.
Matt and Heidi, hanging out.

Me, getting caught up with the world.

Did somebody say chicken?


Navigator's tools.

Hey, that's the state we were looking for!

A rainbow, right as we arrive at our destination.

Simple Things

I'm snacking on a whole pile of fresh pea pods from my garden. They are so tasty :) So far we've been able to harvest peas, strawberries, chives, radishes, lettuce, spinach, and one deliciously sweet onion. I love being able to go out and just much and graze :) Today I noticed my blueberries, slowly growing plumper by the day, and my first tomato, starting to turn color. I don't like raw tomato that much, but I love to cook with them :) Still growing and maturing in my garden I have rhubarb, peppers, squash, zucchini, celery, eggplant, pole beans, bush beans, artichoke, cauliflower, carrots, and kohlrabi. Points if you know what kolhrabi is! I leave you with a picture progression of my garden, from a few months ago to pictures from this morning.

Happy Fourth!

Note - Pepe has pulled through her transplant, but had to go back to the OR after a few hours to stop bleeding. This is not unexpected with the severity of her disease, but it was concerning none the less. She has made it through the second operation and is recovering... my thoughts are with her, her family and friends, as well as the donor family.

Happy Fourth all :)

Enjoy the fireworks... especially if you are in South Carolina which has fireworks that are so illegal here! Here, nothing can fly off the ground, the fountains are super limited in height... but oh the fireworks my brother-in-law, Josh, sells in South Carolina!

Across the Country 2007

(Please read my last entry about Pepe!)

In the Summer of 2007, one of my "always wanted to do" came true, and Matt and I drove across the country. I've always wanted to be able to go across the county, in a car, with the miles of road stretching in front and behind of me like a ribbon. Below is a small portion of our trip, with more portions hopefully coming.

A fully loaded back seat, all the essentials for a 3 week trip :)

Our first mountain pass, over the Cascades. I took the slightly longer route, the Cascade Lakes Scenic Byway as Matt had never been over it before. Winding between mountain lakes, bending around mountains, then falling into the city of Bend, it is a great drive on a sunny summer day. In Bend we had lunch with my Uncle Bob, Aunt Momi, Cousin Gerad, and Momi's mother Fumiko. It was great to touch base with them before heading out on adventures untold. The day before, we had seen my father's side of the family at the coast at family reunion, so seeing a bit of my mother's family as well was a great way to head off.

A stop for those little things you don't really think much about before heading out at Target in Nampa, ID, where the history of my family in the area is deep, with most of my father's side of the family working the land there in generations previous. I think we ended up buying batteries, extra sunscreen, a new CD player (as mine was terrible) and even a gift for Matt's brother while we were there.

We got back on the road, the sun setting at our backs, as we continued our journey eastward. Around 10pm that night, I was done driving, as I had been at the wheel since we left Eugene, and we were now approaching the Idaho/Utah border. Matt and I switched places, and I climbed into the passenger seat, curling up under my favorite blanket, and catching a night of sleep. We were in a hurry, as we needed to be in South Carolina by Friday, as Matt's cousin was getting married that Saturday. We made the decision to only stop for food and walking around on the way out to Kentucky, where we would spend the night at my sister's place. I took the day side driving, Matt tackled the nighttime. Sunday turned into Monday as we crossed the Rocky Mountains. At the Wyoming/Nebraska border, after we ate breakfast, it was time to trade off again. I drove across Nebraska, stopping at Cabela's to pick up my my father a few items from one of his favorite vendors.

Granted I didn't expect to see an elephant inside!

I like how they appreciate the fact that, well, places are a little spread out in Nebraska...


And signs directing us to well, ourselves, Fairfax, and in case we wanted Oregon, Missouri... there we go!


More to share later!

Miracle in Motion!

I woke up this morning, scared to check one of the blogs of my Internet friends who I have spent time chatting with at Cysticfibrosis.com. Gina a.k.a. Pepe has been very sick for a long time, with frequent absences from the nightly chat room brought by needing the vent again, or simply needing all of her energy just to breathe. I don't even know how long she's been in the hospital, but I know that she's been in for a very long time, waiting for a transplant, hearing the transplant may not be an option, and fighting just to live. All the while she maintained a wonderful spirit that I loved in the chat room.

Yesterday, my heart broke as I read the latest entry. I prayed for one more chance, for Gina to step past death one last time. I never imagined that THE CALL would come, that that is the first news that greeted me this morning. God came through greater than my biggest prayers. She still has a long road. Surgery is not even done, and her life hangs by a thread, in the hands of the surgeon's, guided by God.

Coming Home

This is chapter 15 in my history. Other chapters can be can be found by clicking on "History" at the right.

I know, it's been a long time since I gave a glimpse into my history, but here, goes, and we're almost up to the present.

I left off right after marrying my love, Matt. We settled into a tiny apartment in Salem, OR, with my long time roommate, Tyrone. Life was tough, between being in debt, Matt traveling an hour each way to work in Eugene, and living in a tiny apartment. I still was unable to find a teaching job, so I continued substitute teaching. By this time it was obvious that my health was slowly failing, but I was too stubborn to admit it. I was taking more and more days off from subbing, napping heavily on days where I did work, and never felt well. By Spring 2007, it was clear to me, Matt, and my parents that it was time for me to quit, but I was unsure if we could make it financially. This is when God's grace again touched my life and changed it radically.

Matt and I were both saying a prayer for a way to lift ourselves from the blanket of debt that smothered us. While we were able to keep a roof over our heads, food on the table, and the lights on, our credit card debt was out of control, especially mine. Years of living paycheck to paycheck and still not making it had caught up to me. All of my cards were over their limits, and the monthly minimums were impossible for me to make. I mostly stayed quiet about my struggle, the shame alone was too much for me to handle, let alone the humility to ask those around me for help. I sent up prayers for someway to wipe the slate clean, start over, and be free of the constant fear and paranoia of living in debt gave me.

Around this time, we were also considering a move to Eugene. This would put Matt in the same city as his work, and I could go back to a less demanding retail job, that hopefully I wouldn't bet as sick at. Tyrone, also ready for a new start, accompanied us on a low-income apartment search in Eugene. We started the next week, back to the grind of daily life, when Matt received news that would radically change the condition of our lives. The company that Matt worked for as a game programmer was being purchased by a larger company. The company would stay essentially the same, but now have capital to help make their goals a reality. In addition, they were buying the stock that the employees had invested. Matt had a significant amount of stock, and now we were set to receive a significant amount of money. Our debt would be gone, our worry lessened, and suddenly my not working didn't seem as scary. Not only that, but we had enough money to put a large down payment on a house... to go from one weekend looking at low-income apartments to looking at homes the very next weekend was quite the experience.

They say that money doesn't buy happiness, and at it's very core, that is a true statement. But the money made it so that there was so much less worry in our lives. The ability to relax and not stress as much led to more happiness and joy in our lives. We found a home fairly quickly and by April 2007 we were homeowners with only the mortgage hanging in our debt cloud. I made the official decision to quit work, and after an August hospitalization, I applied for disability. Officially resigning myself to not teaching anymore was difficult. I hated the thought of giving up the fight with my body to reach my dreams, but I knew that I couldn't physically handle it anymore. I was approved for disability, not a small feet for a first time applicant, and now we live in our home, happy and financially safe.

For the most part, this brings us up to today. There are many more stories to tell, but those will come, with time :) I am going to try to get better about posting more frequently, so we will see what happens!

Why I'm so shocked my lung function was up

I live in the Willamette Valley, which is beautiful, green, and temperate almost all year long. But the valley also has it's own little demon that shows its face every year, in late Spring, grass pollen. We grow somewhere around 90% of the grass seed for the WORLD here... and when you have a grass allergy and lung disease, that can be quite the challenge.
My allergies are not as severe as they were when I was younger, but it's always a challenge. My local paper did an article today that out lies how our "pollen soup" could effect the lung function of the elite athletes coming to town for the Olympic Trials. Imagine what that could do to little old me!

So lung function being up... a blessing indeed!

Good Clinic

Went to CF clinic today. To be honest, I wasn't sure what to expect. Up until last week, I was pretty sure that I may end up in the hospital. The last few days, despite increasing severity of allergy symptoms, I thought maybe I'd avoid the hospital.

Well...

My lung function went up. It inched up, slightly, so that my total capacity is 52% of what would be expected for my weight and height, while the amount of air I can force out in the first second, the number my clinic is most interested in, was at 44%, also a gain from last time. My weight stayed stable... a good thing and a bad thing. At least I didn't go down, but I really need to put on weight. More working and struggling with that.

Thank you for your prayers. I jump in lung function in the peak of allergy season is a huge blessing.

Leaving on a Jet Plane

This is me and my sister Heidi. As I type this,she is bound for Kenya, leaving for a month on a missions trip. Although I rarely see her, being that she lived in Kentucky, I'll miss being able to talk with her several times a week. I pray for her safety and that she will be able to do good work over there :)

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.

My Enchiladas

Being a CF girl, I spend a lot of time in the kitchen... being creative, I like to throw things together... this is probably the best invention I've done so far!

Enchiladas a la Daydee :)

4 chicken breasts
2 large cans enchilada sauce
2 small cans "mexican salsa" or pico de gallo, or diced fresh tomatoes, onion, pepper
1 packet enchilada spices
1 large tub sour cream
1/4 cup to 1/2 cup milk

Boil chicken breasts in water until cooked through, about 20 minutes. Set aside to cool.

While chicken is cooling, heat the enchilada sauce, spices, milk, and salsa in a large pot. Heat over medium heat, but don't let it boil hard.

When chicken is cool enough to handle, shred into bite sized pieces.

Add chicken and sour cream to sauce. If difficult to stir, add more milk. Bring to a simmer on low to medium low heat. It's ready to eat at this point, but gets better as it simmers.

I eat over rice, but others use chips to dip into it, plain, or with tortilla shells.

Great Strides

(A repost of the letter sent out to my donors today)

To Everyone Who Donated to Great Strides,

Thank you so much! I have been so touched by the friends, family, and strangers who have donated. When I set my goal at $1,000 before starting my fundraising, I doubted I would be able to make my goal. Soon however, I found donations rolling in quickly. I optimistically upped my goal to $1,500, thinking that I would be amazed if I got there. After a very generous donation, the $1,500 goal was left in the dust. I pushed my goal up to $2,500, and I'm proud to say this week I hit it. With my teammates bringing in nearly an additional $500, we were the top team in the Eugene walk yesterday, with nearly 40% of the total funds raised coming directly from my team.

CFF is a passionate cause for me. Because of the research they have funded, I've lived long enough to see the standard of care for a CF patient go up. In my lifetime, the life expectancy of a CF patient has nearly doubled. 37 years may not sound like much, but it is a huge leap from the 18-21 years that was average when I was diagnosed... and the Kindergarten life expectancy of someone born with CF before 1970. We still have a long way to go, but through donations like yours, awareness that I know has been generated, and working together, we are getting there.

Again thank you. You do not know how much your donation meant to me. The pride I feel when I know how many people are willing to stand beside me and fight for a cure.

Until CF stands for Cure Found,

Talana

Walk Update

So it's been a bit since I've posted about my CF walk...

Well....

I raised over $2,500!!!!

Hurray!!!!!

There is still time left to donate, walk day is Saturday :)

Long Absence!

Alright, so I never intended to not post this long, but I've been out living life!

Since I last posted:

* I had a small bout of depression when I realized how much my health has slipped in three years time. I have always had small bouts like this where I fall into depression suddenly, then snap out just as suddenly. I'm back to normal me.

* I've decided that Elton John, Billy Joel, and Eric Clapton have a conspiracy to dislocate a finger of mine as I've been working on learning Circle of Life, Written in the Stars, Piano Man, and Wonderful Tonight on the piano. Hard but rewarding work. I've always thought of Piano Man as one piece I wanted to learn but never thought I would be good enough. I guess I am!

* Went back to the diabetes doctors. Since I had several high, but not starling high blood sugars, they decided that I would be fine without insulin, but I needed some form of management. So I was placed on Januvia, and newer pill designed for Type II diabetes. It has seemed to lower my blood sugars which is a super good thing.

* Went to CF clinic. My lung function was marginally down and my weight was the same. Lynn and I agree that with the combination of the weather changes, allergies, and a slight cold, my lungs took a beating, but were also doing surprisingly well. We decided that I probably would not need oral antibiotics, but she wants me to come back in a month to make sure that I am still remaining well.

* I shook Obama's hand! I've been interested in and inspired by him since his 2004 speech. He embodies much of my ideals in politics. I went and saw him his last swing through Eugene. I almost didn't go this time, but a strong voice in the back of my head told me to go. I was having trouble breathing when I arrived and I knew that walking the several blocks to the end of the line would be very painful. I spoke to some volunteers and staffers, and they allowed me to wait at the gate and cut to the front of the line... and I was right in front, 15 ft away from him while he spoke... then he came and shook hands.



* Otherwise, all is good. I should be posting pictures soon of my garden :) I have done a lot of work and have been rewarded with all of my veggie seeds sprouting and beginning to grow.

Only a CF eye would see this...

So I'm browsing news stories today on CNN, skimming articles, when an add catches my attention out of the corner of my eye. Immediately I have a few questions...

1. Why in the world would someone advertise a feeding tube?

2. Why is the tube not in the proper place?

3. WTHOMGBBQ!

Then I realize, no, not a feeding tube at all!

Things You May or May Not Know About Talana

* Corn on the cob makes me violently sick, really fast, but I can eat any corn byproduct such as corn tortillas or chips, with popcorn being one of my favorite foods.


*I've never lived more than 5 miles away from the Willamette River, even though I have lived in multiple towns. The only time away from the river was when I spent my summers in Maine and California. In Maine I was told that I was pronouncing the name of the river wrong, even though she had never been there. It's Will-am-it people, not Will-a-met-tee or Will-a-met!

*I can bend my extra long fingers backwards 90 degrees, cross my pinkie toe over my 4th toe without touching it, as well as my big toe over my second toe. I often find myself picking up things off the floor with my toes.

*Every time I get a comment on this site, it makes me very happy, and sometimes I squeal like a little school girl.

Update

I know it's been a few days since I posted. Honestly, I have not been feeling great. Tired especially, some fevers, some belly junk, a little more coughing. Just generally not feeling great. Something that happens quite often when the weather changes very quickly, like it has here this week. Last Saturday it was 84 degrees. Right now as I type this, it's below freezing, and our high today is supposed to be like 42... half of last week. Ridiculous. I need to do some chest therapy, it's just so hard when I don't feel good :(

I'll be back though, I will bounce back.

What a Difference a Day Makes

Rembember Saturday when I said I was gardening in 80+ degree heat? Well yesterday I was planting a few color spots that I picked up... when it started hailing... pea sized hail for 10 minutes straight. Today? Instead of sweat running down my face, dressed in a tshirt and shorts, I was in sweats and my nose was running from the cold. 45 degrees... oh the life of an Oregonian. But I do now have some color spots in my yard, several summer time bulbs planted, and a bunch of veggie starts and seeds waiting to go in the ground :)

Hard Work on a Glorious Day

Today was one of those rarefied days for those of us that live in the Pacific Northwest in the Spring... It was sunny, over 80 degrees, and gorgeous. I took full advantage of this and continued my yard work that I have been sneaking in the last few weeks between rain showers. I am slowly building a flower bed in our front yard and a large garden bed in our back yard. The front yard, although a small plot, is painstakingly slow to dig. This is because when the yard was laid before we moved here, they used the instant lawn, but neglected to remove the netting that held it together and it was not of the biodegradable variety. So every dig just below the surface results in a fight to chop through the tough vinyl netting. I'm slowly working my way through, breaking the netting, turning the piece over, removing the netting, then mulching the grass and sod in. I have been and will be planting flower bulbs out here.

The back is less painstakingly slow, as my father rototilled the whole thing last year, but I am digging a large plot, about 8x15 ft. Small in comparison to the large garden that I grew up with, but perfect to have some fresh veggies all summer. I'm digging out an area, then Matt and I are going to put board sides on the plot, then fill it with soil. The digging work out back is made difficult by the large rocks, as we are not too far from a stream. I even found one the same size as a softball today.

I accomplished a lot on both plots today, despite the unexpected heat, and running away from the mowing of the grass as I have a fairly violent allergy to grass... my knees are still raw and red from kneeling in the grass over 12 hours ago. But I am so happy that I was able to do the work. Proud that I'm still healthy enough to do it. I may go a lot slower than most, but on slow work like that that takes endurance and strength I do well. Don't ask me to sprint, but I do have some endurance. I definitely consider all my digging today my exercise. Did some of it last night as well. I only managed to make it to the pool once this week, but I also took a bike ride around the neighborhood another day, taking advantage of these not so rainy Spring days... by Monday it's supposed to be back to cool, dreary, and damp... and I'll back to gardening between rain showers, but I loved the sun while it lasted.

Somewhere

There's a place for us
Somewhere a place for us

I was playing through this song on the piano tonight, and I realized while it may have been written about race relations for West Side Story, it is a good analogy for the CF world, both within the CF community and it's relations to the greater world.

There's a place for us,
Somewhere a place for us.
Peace and quiet and open air,
wait for us,
somewhere

Someday, in our world where there is a cure, where we will no longer be separated by our disease. CF isolates both the person from being part of the "normal" world, but in a cruel twist, CF also isolates from itself. Because of the unique bacteria we carry, cross infection is a great worry. While my childhood was spent going to CF camp, now CF people are not supposed to get within 3 ft of each other. Personal contact is discouraged, leaving each patient isolated on their own island. Imagine having our own safe place... no loud coughing, no loud machines, free breathing.

There's a time for us,
Someday a time for us.
Time together with time to spare,
time to learn,
time to share.

In the world of cure we don't have to worry anymore about running out of time. Don't have to cram in living while you still have the breath. As much time with those that we love as possible. But we also know the lessons of living life, enjoying, cherishing. We teach, we share this with the world. The joy of life, freedom, air.

Someday, somewhere,
We'll find a new way of living,
We'll find a way of forgiving,
somewhere.

A life not determined by med schedules. A life where we no longer get stared at by people when we have loud coughing fits. But also the ability to forgive those that didn't understand us... those that gave us the strange looks. That hurt us. Because everyone has their own ailments.

There's a place for us,
A time and place for us.
Hold my hand and we're halfway there,
Hold my hand and I'll take you there,
Somehow, someday, somewhere.

I don't have the answers to cure CF. But I do have hope for the cure. Do you?

The Stars Lined Up

This is Chapter 14 in my history:

As I said last chapter, one email changed my life during my November 2005 hospital stay. Here's the story:

I had been single for some time. I had dated a few guys in my life, but nothing ever felt serious. I never seemed to meet guys that were interested in me, my social circle limited. One night while feeling pretty down on myself, I posted on my Live Journal: "Seriously, if any of you know a guy for me, let me know, I promise I won't do the Talana freak out thing". I soon received a comment from Addie, a friend of a friend that I had met briefly in person a few times. She said that this friend of hers might just be perfect for me. My good friend Jennifer also commented on this, saying that she had met him and that Addie may be right. So I gave Addie permission to tell Matt about me... then I heard nothing.

Weeks, even months ticked by, and I gave little thought to that exchange. I was super busy, with subbing, and working, and life... I had little time to add something new to my life. My busy schedule finally caught up with me and my lung function took a dive as infections raged in my lungs. My good friend Richard lent me a laptop while I was in the hospital so I would not die of boredom.

Little did I know, this guy that Addie had told me about was thinking about me. Addie had told him about me, but never really arranged for us to meet. So he found my live journal, found the entry where I was asking if anybody knew anyone, and left a brief comment. As I was in the hospital, and had little to do, the comment came at the perfect time. I wrote him a quick email, letting him know about myself. Then he responded, then I responded. Soon we were writing long emails back and forth, getting to know each other, learning about each others' backgrounds. This provided me ample entertainment as I sat in the boring hospital. If he had commented at any other time, I probably would have been too busy to begin to respond. The fact that I was in the hospital played into our relationship. CF was there from the beginning, and if he was going to be with me, he was going to have to accept it.

I knew I was getting out of the hospital soon, so I dropped hints that I would be in the Eugene area that weekend. Matt picked up on these hints and arranged for us to have a date. I was understandably nervous, going on a date with somebody that I had never met in person, but I was ready to try something new. I dressed for our date, making sure my PICC line was covered by my clothes. A PICC line is an IV access that is by the elbow that allows patients to do home IV's. While Matt knew about my CF, I didn't want to flaunt it right when I met him.

The date went well. It was nice to know a little about each other before hand so that our conversations weren't the stilted, awkwardness of a first date. I decided that I probably liked this guy... and I wanted to see where our relationship would go. He walked me out to my car at the end of our date. I needed to go, as it was time for my IV's. When I settled into my car, I leaned out, and kissed him. I was so touched that he was okay with me, okay with my CF... and I was starting to be interested.

More dates followed, and soon we were spending several evenings together, despite the fact that we lived an hour apart. Our relationship moved quickly. The match between us was so easy, that it took several months before we even had a fight. I've never been in any type of relationship that was as easy as it was with Matt. He knew that he loved me pretty quickly, but it took me a few months to realize it. I remember waking up that February morning knowing that he was the one. We were engaged that July, flew out to South Carolina to meet his family. That October, with my COBRA coverage running out, we married in Reno at the same chapel that my parents were married at 32 years before, on the 34th anniversary of the day that they were engaged, another Friday, October 13th.



Everything aligned perfectly for us. I praise the Lord every day that I found him, that he found me...

A Little Performing

I've mentioned how piano is a passion of mine. I took several years of lessons, but I've always had problems performing under pressure... and filiming is a major form of pressure for me. But today I managed to pull out a fairly clean performance of the full suite from Forrest Gump. Warning, it is over eight minutes long...




Then I decided to try to see if I could get another song as I was able to get that recording on the first try for today (let's not count all the other attempts on other days). I was able to get this on my first attempt! Unchained Melody...