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...

Tricia update

(I posted a chapter of my history below, be sure to catch it too)
Tricia made it through surgery... and taking a page out of Eva's book...

I read the news.. "Surgery Successful"

I smile

I'm joyous

And I feel releived

And now I pray for this next stage to go well... step one, surgery down. Recovery is even more perilous for most... I pray for the donor family... Praise the Lord... for thing great we can see, things unseen. Solace in times of pain... and blessings in darkest hours.

Post College Break

As I wait for news about Tricia (I never sleep during transplants) I will write another chapter...

This is Chapter 13 in my history...

After I graduated from college, I was not quite sure what path my life would go down. I had my teaching license, and I had applied for several jobs, but there seemed to be little opportunity in Oregon for a newly graduated elementary teacher. The golden market that was supposed to happen when I graduated didn't pan out. There was the large number of teacher retiring, like promised, however due to dramatic cuts in education funding, schools were not replacing these teachers and instead making classes bigger. Thirty in a first grade classroom was not unusual. I considered options out of state, but hardly had the resources to make such a move. The fear of leaving my safety net of family and health care providers was also a factor.

On June 1st, just before I graduated, an eviction notice was placed on my apartment door. Even though I had never missed a payment, they were terminating my month to month rental to renovate it. I was again in a bad roommate situation and wanted to leave, but I really wanted to stick it out for the summer to see if I could get a teaching job somewhere but keep working my job at Mervyn's to keep my insurance until then. Instead, I was being forced out of an unhealthy situation, but was uncertain where I would live in 30 day's time. Fear grew that month as I continued to not get calls for interviews. I thankfully had two good friends at work both offer me couches to sleep on if I couldn't find a place. I ended up having to do that. I didn't want to find a new apartment if I were to get a teaching job and have to move right away. I also didn't have the money to cover a move at a time. So I became homeless for the summer, or as my dear friend Tommy who took me in called it "you're not homeless, you have a couch".

By the end of summer it was clear that I wasn't going to get my own classroom that year. I was sad, but also so burnt out from the previous year, that I was almost glad to only focus on working at Mervyn's and myself. I found an apartment with my other friend that had offered me a place to stay. We settled in our tiny apartment and went about our year. Mervyn's was not the best place to work, but I was able to pay most of the bills and I had health insurance. I was still relying heavily on my parents and was in big debt, but I was also trying to make it.

As the next summer came, I really started to try to find a teaching job... I applied to everything, had a few interviews, and once again came up empty. It broke my heart and I felt like a failure. I started to see more and more of my peers from school get jobs. I felt inadequate and a lot of the feelings that I had dealt with when I had that horrible professor reared their ugly head. It took me a few weeks that September to pull myself back up and dive into the world of substitute teaching.

Mervyn's was starting to go through some major financial issues at that time, and the cut my benefits. I don't remember the exact month this happened, other than it was at this time. This was terrible news... while I would be eligible to buy COBRA coverage, it came at over $500 a month. I had no option but to buy it... and if it weren't for my parents, I probably would have gone into bankruptcy at this point. I barely made more than $500 a month. With my bills, rent, food, and debt, I would have drowned. I am so grateful that they were there to support and help me. I still worked at Mervyn's, just so I would have a job for the summer, but I cut back my hours.

I began substitute teaching that October. Work was fairly easy to get, as it's Oregon law that substitute teachers have to be licenced, thus the pool of people is limited. I quickly found that I actually could have fun subbing. The horror stories didn't apply to me most of the time. I had a confidence as a sub, and a good rapport with the students.

That November I had to go back into the hospital. November 2005. The hospital stay, the break from my hectic life, and one email would change my life... but that's for the next chapter!

Transplant for Tricia

Well, it sounds like it may be a go this time for Tricia's transplant. I am praying hard for them and for the donor family!

Swimming and Big CF Drug News

I went again today :D I was going to go yesterday, but my day ended up being a show of errors and nothing going as expected, although my dinner that I invented the recipe for turned out great! 4 Cheese Stuffed Shells with Alfredo Sauce and Breaded Chicken.

I did some more just movement in the water, than I swam 3 laps in back stroke. I know it's not much, but it's something. My lungs fought me, as they are still weak from my latest cold, but I did it. I plan to try and go again on Thursday and add one more lap. I may go tomorrow, but tomorrow is also bowling night... and I want to be on my game. Bowling is probably my favorite form of exercise, but it really does not work the lungs, so swimming it is for that.

This past week there has been news about a new drug that has really helped CF patients in the trial for it. Marked improvement over 2 weeks time, VX770 a pill, targeted the sodium channels that is the basis for why CF is what it is. While this news was great, it wasn't so much for me. See VX770 is targeted to a specific mutation of the gene that causes CF. CF can be caused by several gene mutations... this drug was targeted for people with a mutation from the G group, while my mutations are both Delta F-508, the most common mutation. However, from reading Carla's Blog I learned that right behind VX770 is VX809 in the pipeline... and it's targeted right at my mutation. It's still being tested for safety, and not even out for trial for CF patients yet, but if it's anything like VX770, this could be huge news!