Princess Talana's Kingdom

Latest Clinic

2011-07-16T00:33:00.000-07:00

Today's CF Clinic was interesting.

For a few years now, my FEV1 (a measure of how much air can be pushed out in the first second) has been hovering around 30%. Sometimes a bit higher, sometimes a bit lower. This is somewhat a "magic bullet" number in the CF world, a line where transplant becomes a serious conversation. When I started to hit 30% regularly, Portland seemed to advocate a wait and see model. Wait for something else to happen, because I was still functioning very well, and rarely had infections. It was a stance that I was semi-uncomfortable with. Yes, I was stable then, but it is impossible to tell how long I was going to stay stable. I wanted to start the transplant process, as far as at least meeting the team in Seattle, which is the closest transplant center to Eugene, OR, where I was living at the time. Starting some of the tests to see how damaged my lungs were. Portland did not agree with me on this, and when I moved away, we were still at this impasse.

Moving to Vegas, they were surprised with the attitude that Vegas took. They thought that while I was healthy, while I was stable, I was close to the edge, and that tipping point could be tomorrow, or years from now, but that tipping point was close, and getting the transplant ball rolling would be in my best interest if the tipping point indeed happened sooner, rather than later. In the short year that I was in Vegas, I completed the majority of tests for transplantation, and made a trip to meet the team at UCLA. They too thought that I was too healthy at that current moment, but that it would be wise to check in with me a couple to a few times a year to make sure that I was not declining. They said that if I demanded it, I could be listed for lungs, but given my low infection rate and ability to function, staying with my current lungs was probably in my best interest.

And now I'm living in the Bay area... with another CF team. They take a fairly similar perspective to the Vegas team. I am close, but not quite there, and my doctor thinks that right now, the two lung transplant centers would say that I'm not quite sick enough to qualify. Because of the newer system of allocating lungs based on need as opposed to wait time, 30% is not quite the magic number that it used to be. It's now much more based on the patient, and how they cope with their numbers. How they cope with the severity of the disease. And while there is no question that my lungs are severely diseased, they aren't quite ready to give up on me yet. This could change tomorrow. Or I could sit here for many years. There is no predictor. Even with having MRSA, which can be very harmful in some patients, it appears that to me, it does not cause the steep decline seen in others. They have had me complete a few more tests that are needed before one can be listed for transplant... but otherwise we just wait and monitor.

My lung function tests today had some interesting numbers. My FEV1, was 29%, which is what it was last clinic. However, my FVC, the total amount of air I can get into my lungs, declined a bit. This is somewhat unusual to not have a drop in FEV1, yet have a drop in FVC. Because of this decline, I'll be doing a course of oral antibiotics, including one that I have not tried yet. I really enjoyed that my doctor gave me the reasoning behind the drugs he chose. He is also starting me on a weekly osteoporosis med. It's something that I've been close to needing for years. But my latest bone density finally show a change from osteopenic to osteoporosis. Though, I am literally on the border, strong bones are essential for post-transplant survival, and living long in general, so I'm starting on this med.

Also, my last sputum cultures showed a very odd strain of Pseudomonas that I've never had before and is resistant to everything. My doctor thinks that it may have been a one time thing, that it didn't colonize, and will not show up again. This is backed up by me getting sick pretty hard right after that culture, than feeling better than I've felt in some time. He's hopeful that my immune system took care of it... me too...

I am also changing my diabetes medication. Gone is Januvia... but replaced by another oral med that I only take when I am eating a carb dense meal. I'm not sure yet what I think about this plan, but I am willing to try it, especially to avoid insulin as long as possible, because I really do not want to add something more intensive to my medication routine. I also run several low blood sugars, without insulin, so it may not be the wisest thing for me right now.

So that's a long overdue update on my health. I hope to get back to writing more. I can't really explain my long absence, other than I've not felt the strong urge to write. Or more accurately, I have not felt that I have been able to write something up to the standards that i hold with myself.

One Year

2011-03-27T00:00:00.000-07:00

I know where I was a year ago. Standing on the Hoover Dam, when I got the phone call... Eva was gone. I knew it was coming, despite my greatest hopes that the miracle would come. It had been clear for a few weeks that it probably wouldn't. Still, to know that it would never come, my heart broke into a million pieces.

Standing on one of the greatest monuments to man standing up against nature, creating life where it wasn't meant to be, I had a hard time bringing the words to my lips to tell my husband and one of my best friends that was in town that she was gone. I didn't want to say them, because I didn't want to validate them being true. My FB and twitter began to fill up with condolences. It meant a lot. The little village that spanned the world, brought together by CF and her unflinching words, was there to help rally around me.

I've had a hard time writing ever since. It's hard for me to pinpoint why. I feel like I should. I need to on some level. But, it just, I don't know. I met Eva through this keyboard. Through the internet community. We stood by each other through loss. We had a blessed day together when she was the picture of health. And I got to see her sparkle on the red carpet. And now, I'm left to help carry on her legacy. And I feel that nothing I write would ever be able to capture how much she meant to me.

The unflinching truth about me? CF is slowly getting me. I'm still not quite sick enough for a transplant, but I doubt I will ever have a day where I truly feel GOOD until I am hopefully blessed with the gift of life from another. That's a lot to deal with at 28. My house is a mess around me. It's hard physically to do the work, and mentally to deal with that I can't do all that I want to. But, I am trying. Slowly I see more of me appearing from the bounds of my body.

But the winds continue to swirl. The sun rises and sets. Life continues. My life continues. I continue to try, though I don't always know where I'm headed, I try to head there with love. Love. Always love.

Bad Times are gone!

2010-11-14T02:52:00.000-08:00

We have employment! An update on the major changes in our lives to come soon!

Bad times here at the Fairfax household. As of Thursday, Matt unexpectedly lost his job when his company shuttered their doors. They were the whole reason behind our move to Vegas last December, and now we have nothing coming in beyond my disability.

He's madly looking for another job... that may leave us here, take us back to Oregon, or anywhere between the Bay Area, to the Carolinas... but we have to find something.

I am of course, freaking out about medical costs, what to do about insurance, and all of that. Will be putting a call into the social worker here, and probably at my old clinic in Portland to see what my options are. Going on Medicare is an option, as well as Cobra, but we have no idea how much these two things will cost us. I have an okay stockpile on medications, though some I have virtually none.

I don't know where our lives are going to go. And that is terrifying. Though I really hate asking for help, I will include a link to my paypal. Even a few bucks will help us out right now, until we get our feet under us again. I've been in the position so long to be able to help, and have. It's strange and scary to be on the other side.

Dear Eva

2010-11-02T23:41:00.000-07:00

Dear Eva,

7 months since you left this world. Tonight another cystic friend left this world. Invite Gess to the party... he may be shy at first, but if anyone can pull someone out of their shell, it's you.

For Good is on right now, playing on my iTunes shuffle. I don't know how well I'm doing, living the life lessons you taught me. Right now, my life is going so many directions, yet at the same time I feel stuck in the doldrums of being sick. but I'm starting on the next big step. My first meeting with the transplant team at UCLA happened on October 14th, nearly a year to the day after I last hugged you. I know you and Jenn were there with me... my CF cysters who hold me when I'm scared.

The transplant team thinks that I'm still too healthy, which I agree with, but they're going to keep a close eye on me... for which I'm grateful for. I am so scared of getting too sick, waiting too long, or suddenly being gone like Jenn. I'm scared for my family, for Matt, for my friends... I need to make it through this, I need to breathe again.

I miss you girl, each and every day. Squish Jenn for me, have a dance party, and welcome Gess. I'll talk to you again soon.

Talana

Slipped Stitch Stripey Hat

2010-09-14T18:01:00.001-07:00

I made this lovely hat with yarn that was graciously given to me by the lovely people at Crystal Palace yarns. I love the mochi line, with its rich colors, and amazing softness. This hat has an option to fold the brim up to have a short hat, or bring the brim down to cover the ears.

Materials - 2 balls of Chunky Mochi
Size 10 Needles

Abbreviations -
k - knit
p - purl
s|1 - Slip one stitch
k2tog - knit two together

Procedure -

Brim - Cast on 64 stitches using the long tail method. Join to work in the round. *K1,P3* until brim measures 2 inches. On the following round, knit all stitches. Then purl all stitches for a round. This creates a nice line for folding, and a break in the visual line between the brim and the body of the hat.

Body - Round 1 - *k3,s|1*
Round 2 - *k*

Repeat these two rounds until hat measures approximately 4-5 inches from brim.

Decrease Rounds - Round 1 - *k1,k2tog,s|1,k3,s|1* (56 stitches on the needles)
Round 2 - *k*
Round 3 - *k2,s|1,k1,k2tog,s|1* (48 stitches on the needles)
Round 4 - *k*
Round 5 - *k2tog,s|1,k2,s|1* (40 stitches)
Round 6 - *k*
Round 7 - *k1,s|1,k2tog,s|1* (32 stitches)
Round 8 - *k*
Round 9 - *k2tog,k2* (24 stitches)
Round 10 - *k*
Round 11 - *k2,k2tog* (16 stitches)
Round 12 - *k*
Round 13 - *k2tog* (8 stitches)
Round 14 - *k*

Kitchner stitch the remaining 8 stitches together. Weave in ends.

Today's Clinic...

2010-07-01T00:13:00.000-07:00

Didn't go so great. Despite being up 10 lbs, which should be cause for celebration, my PFTs were down 5%. Under 30%. They wanted to admit me, start me on IVs, but I have to hold off. We have plans, and as I don't feel bad, I am going to go home to Oregon, then to South Carolina to see Matt's family, then I will go into the hospital. I know some people out there in cyberland think that I'm probably crazy for doing that, and that I'm not putting my health first. Maybe. But maybe not. Because I know my emotional and mental health would take a HUGE hit not going home in 8 days... it's my birthday weekend and I want to be home. And we haven't been to South Carolina in a year and a half, and I'm desperate to see that side of my family. Plus, I don't feel bad. Other than shortness of breath, I am trucking along just fine. So my doctor reluctantly handed me oral antibiotics and some prednisone. When I get back at the end of July, I'll go in for those IV's, as well as starting testing for a lung transplant evaluation.

Conner

2010-06-25T01:42:00.000-07:00

I hate CF.

When I can't breathe.

When friends die.

When the bills are too much to pay.

But nothing is greater than the rage, sadness, and desperation for refuge that I feel when a young child dies of this beast.

Conner, you fought so hard. Peace and love to your family, as you finally run and play without gasping for breath

27, planning 30

2010-05-21T22:41:00.000-07:00

I'm already planning my 30th birthday. It doesn't matter that I'm yet to turn 29, or even 28 for that matter, I'm already thinking about what I want to do for my 30th. I don't think there is anyone else in this world that anticipates 30 quite like a cystic born in my generation.

When we were born, 18 was about the best that anyone could ask for. Parents were told to take their kids home and enjoy them while they still had them. Growing up was a dream. Our childhood was a period of great discovery in the CF world, from finding the gene, developing new medication, and discovering better therapy protocols. By the time we were teenagers, the life expectancy had grown to 30. Where it sat. And sat. And sat. It's slowly crept up since then, but for a long time 30 was the magic number.

And now 30 is slowly coming into sight. I know that it's still a long time off though, when you only have 30% lung capacity. It's a very real possibility that between here and there, I may have a lung transplant. It's a very real possibility that I stay the same or very slowly decline. It's also a very real possibility that I won't see 30 at all.

I'm pretty sure I'll make it to 28. Shoot, the groceries I'm buying lately have my birthday as their use by date. If they can make it to July 12th, then so can I. And 28 is awesome... but it's no 30.

Do I have a huge party? Would anyone come? (wait Talana, the "I'm insecure and nobody loves me" post is for another time) Maybe a cruise? I'd want some people that I love to come with me like my parents and my sister.

Holding Fast to Quicksand

2010-05-04T05:25:00.000-07:00

This weekend was a study in all the parallels of the CF world. Of all the intrinsic parts of holding on to fleeting moments.

I traveled to Boston this weekend for Paul's memorial service. Though he passed away last year, the service wasn't until this weekend. It gave the perfect opportunity for a large portion of Q's online community to plan their travel from all corners of the US. North Carolina, California, Washington, Indiana... cystics climbed in their cars, boarded planes, and traveled to gather to honor one of their own. We're not supposed to. We're not supposed to ever meet. But we do. Germs be damned, a gathering of those that understand at a level that could never be understood by a non-mutant, a genotypical, is something to behold. I'll post pictures later, but seeing so many strong, wonderful, beautiful people that all share the same monster is amazing. People that despite having a lung transplant mere weeks ago, or lugging a portable oxygen concentrator, or hooking up an IV during lunch, are able to laugh, smile, and be so happy to be a part of the coughing chorus.

But even as we stood there, baking in the unusually warm Boston spring day, friends were dying of the same monster. We lost several in the CF community this weekend. Some of those that were healthy, living, so alive, only weeks ago. Infections that were so fierce that they couldn't be defeated. I don't remember a time before that so many people went from moderate health to dead in only a few weeks. It's scary, because I know it could be me next... or any of my friends.

Some wonder, why would you subject yourself to knowing so many people with CF. The emotional pain that must come from it must be extreme. The dangers of meeting them in person, the possible transfer of bugs, how could you possibly risk that? I wonder how I could possibly not. I would not be the same strong, resolute, and emotionally stable person without these friends. Without these people that get me. And while the online world is amazing, knowing them in person, hearing them cough just like me, seeing them pop their pills, and rest at the bottom, middle, top, and 15 more times in between while climbing a hill, words can't express what that does for my mental health. What that does to make me feel less alone. More connected. More reasons to do my treatments, to fight, and to walk down that transplant path which is rapidly approaching. Giving me strength to start the evaluation process in the near future. I couldn't do it alone. And while my genotypical support group is also VERY important, I couldn't do it with out my nebutants.

Knitting :)

2010-04-13T00:50:00.003-07:00

When you sit at home all day, unable to work, and your only vehicle with your husband at work, you have a little time on your hands.

So you knit :)

Also through knitting groups, I've found fantastic friends here in Vegas... which is so helpful to my mental health. Moving from the area where you've lived your entire life, where you can the into the grocery store and see your cousin, or wave a pedestrian across the street and notice it's a kid you used to babysit, or even somewhere that your Dad's boss is a kid you graduated with. Vegas, I seriously knew no one... so meeting these wonderful women, who also share a fiber obsession has been a huge help!

Eva

2010-04-03T01:51:00.000-07:00

It's taken me a few days to be able to even write anything. To even process.

The weight of you being gone, it just sucked the air out of me.

A glance at my piano. The piano that I played the sheet music on that you bought me while you sang, when those lungs were giving you the life that you always dreamed of.

The pile of red yarn sitting next to my bed, destined to be designed into a shawl to remember you, tiny beads of rouge and silver, glass roses, red of course, to play along the edges.

The lessons you taught me, the ones that you said that I taught you, even though I can't hardly imagine that I could have anything to offer you. I always was amazed that you picked me, chose me, in all my broken and selfish and me ways, that you picked little ol' me to be part of that special group. It's strange looking up to someone who is younger than you, though that looking up was always literal, you made me feel like I should launch into a rousing rendition of "Lolly Pop Guild".

I may appear to a lot of people to be fairly fearless. You saw right through that. Saw all the walls that I put up around my insecurities. That I don't live in fear, but I don't live vibrantly, because if I don't, then I don't have much to be scared of. You're one of the few people that ever saw it, that ever had the words to tell me to buck up. You told me, as my health began to slip, to never be afraid of living. To not give in to the fact that I was sick and to crawl into a hole. That I still needed to live, vibrantly. Lord knows that I try. It's scary. Unbelievably so. You had a way of pushing me, to say what I was scared to say, because I didn't want people to know what I really felt. I don't know how, but you were able to do that. And I know I pushed you sometimes. When I saw a bit of me reflected in you.

Though I don't talk a lot about my faith on here, it's a theme in my life. One that you latched on to. You told me that I helped you find God. It gives me a lot of comfort right now. I rarely proclaim my Christianity, because I'm often judged to be a poor Christian, because I don't go to church, I'm a proud liberal, who is pro choice, pro same sex marriage, and I cuss like a sailor. I'm not perfect. But I do believe in God, and I do believe in Heaven, and I've had experiences that make my faith rock solid. That this girl, who has been told by a few too many Christians that her faith is not worthy because of her beliefs, helped someone believe, by living a quiet believing life. That's a part of God's great miracle.

That's the thing about us. Though we grew up miles apart, in different countries, there was so much that I could see in you, that I felt in me. Not that I could ever be as loving as you. That takes something, a gift that I wasn't quite born with. But yet, we both always tried to see the best in people, the best in situations, even though it sometimes takes me a bit do so, once I dealt with my demons. The same demon that haunted you at the end. Fear. But love was able to calm the demon.

So to you, for you, my Eva, I will try. I will try to be as honest with myself, and my readers, and my friends, and my family, and everything, that I can be. Because that is what you wanted from me.

Dance for me sweet girl. Until we can run, and dance, and play together, never once gasping for breath.

2010-03-24T00:16:00.001-07:00

I have a lot of little news bits...

*started on night time oxygen, and I'm loving it

*changed enzymes to zenpep, hoping this will address some issures

*I have a cold of doom

*I'll be in Boston April 30th-May 3rd

Silly Canada

2010-03-22T02:55:00.001-07:00

When I was a very little girl, I thought that since both Heaven and Washington were up, that clearly, when I looked at the sky, I was looking at the bottom of Washington, and the people in Washington were looking at the bottom of Heaven. Imagine my surprise when I learned that Canada was above Washington, and up meant nothing on a sphere.

The Elephant in the Room

2010-02-24T16:19:00.000-08:00

A CF mom blog broke my heart today. The comments in it broke my heart further. Moms who plan on not telling their young CF kids that CF is fatal. Their reasoning is that it some how lessens the fight, or makes it more difficult. And my heart breaks in a million pieces for these kids. Because like it or not, CF is fatal. And that isn't stopped by positive thoughts and rainbows. Truth, reality, facts, they don't change the fight for a cure, the fight to live. They only make the urge to fight stronger, the will to live even more passionate, because the chance of dying is brought into focus. The following is an excerpt from my comments on the blog, and replying to a mom saying that being realistic makes their fight harder, something that totally baffles me, since we are ALL IN THE SAME FIGHT.

In reply to the blog:

This may seem unwanted, or out of line, but I beg you to not conceal from G that CF may kill him. I'm unclear if you would do so or not by not telling him it's fatal... but I know a number of cystics who had a VERY rough time because their parents didn't tell them that CF was fatal. That learned from playground teasing, or an encyclopedia, or a news article. A pretty devastating way to learn, that really damaged some people, and ruined the trust bond amongst many children and their parents. The new therapies on the horizon are very promising, but it remains that CF will kill, eventually. Parents who didn't tell their now older children thought very much like you that CF would be beaten before it became an issue, and it very well may be, but it very well may not be.

Vertex is the greatest hope in a long time, but it is still not a cure, and it's unknown what the long term battle with CF will look like with it.

Yes, CF sucks. Yes, we need to fight. But hiding the truth, as it now stands, about CF, doesn't make you, or G, or any cystic, any less of a fighter.

And in reply to the comment that said I was making the fight harder:

I'm sorry that you feel that being realistic makes your fight harder. That somehow we are on different sides in facing the same monster. My heart breaks a little for your young CFer... as it does every time that I hear a fellow cystic being withheld information about the monster that lives within them.

I was raised by parents who felt that the most effective way to help me deal with CF, and all of its realities, is to NEVER hide anything about CF. To never shy away from the fact that its possibility of killing me was very high. And I can't thank them enough for that. From the time I was very little, I could ask any question I wanted to about CF, and know that it would be answered truthfully.

I was maybe four or five when I started asking about my future. About maybe what CF meant in that. Very, very young to start asking those questions. And my parents had a choice. Hold on to hope that CF would be cured before my mortality came into question, let me know that the monster within may very well kill me. Sure, this was the mid 1980s, and the lifespan prognosis for CF was very different, but the ultimate outcome was not. This was the time they were finding the gene, and proclaiming that a cure was 5 years away, 10 at most. Surely their very healthy child, who yet needed so much as a nebulizer or a hospital stay could hold on for that long. Surely they wouldn't need to let their preschooler know that she lived with a ticking time bomb. But they did. And I praise them for that. They let me know that CF was very serious, and it was a very real possibility that someday I may get very sick, and that someday CF very well may kill me.

I know. No parent would ever want that conversation. I don't really remember any of this talk. But I do remember always knowing that CF may mean a shortened life. That keeping healthy, going to the doctor, and fighting for a cure were all ways that I could look this fact in the face. It made every treatment, every doctor's visit, and every day worth more, because I knew how vitally important they were.

When I was eight, I learned that a friend, my age, had died of CF. The reality of what death, CF, and everything came crashing in. It was a VERY rough time, but something that I came out the other side much stronger... because my parents were willing to be there, talk about mortality, and acknowledge that there was no way to know what mine, or anyone's future may bring. I emerged from this rough patch a short time later, willing to do all I could to fight... and knowing what was at stake if I didn't. I didn't have to experience years of being unsettled about not knowing why I did my treatments, like some friends whose parents not only hid fatality, but the very existence of CF from their kids. I didn't have to feel like I couldn't trust my parents because they hid something so vital, as far too many people I know did because they found out on their own what CF meant. I didn't have to be shocked by another kid proclaiming "My mom says CF will kill you", as a sickening number of cystics have over the years.

Not admitting that CF is a deadly disease does not change the fact that kids, young kids, kids who are not even teenagers, still die of it today. It's not as common, but it still happens. It does not change that there is not a cure, it does not change that a life is irrevocably altered by CF. Understanding fatality does not decrease the fight, does not make life less lived, and does not end all hope. In my mind it increases all of those things a million times, because all cards are on the table.

ETA: I find it a pretty sad commentary that this CF mom blocked me from following her site. It won't start me from voicing my opinion and the damage that has occurred from not being very frank about the realities of CF.

Ginger

2010-01-27T02:50:00.000-08:00

Today Ginger was supposed to turn 29. Instead, her young son and devoted husband spend their first January 27th without her.

By all measures, Ginger was healthier than I was. Higher lung function, better weight, and less harmful bacteria. We chatted often at http://www.cf2chat.com and I loved her humor and light. On my list of things to do while visiting the inlaws in South Carolina was to meet Ginger.

Then she got the swine flu...

and it was too great of a challenge for her CF lungs. Her death really shook me. It was one in a string of deaths this fall, but her decline was so quick, so head-spinning quick, that it really felt like it came completely out of nowhere, even though she did struggle for quite awhile.

On another note, it's quickly approaching a year since Jenn died. A year since I talked to my wonderful, beautiful, amazing friend. We may have never met in person, but I still count her amongst my closest of friends, and I know that she would do the same for me. The pain of her not being her is not as sharp. Slowly I'm able to feel more like the old Talana. It's hard for me to reconcile how deeply these people I've never met, affect me, my soul, and truly add to my life.

New Clinic

2010-01-13T23:38:00.000-08:00

I had my first visit today with the Las Vegas clinic... something major for me, since I've never seen anyone for my CF except for the doctors at OHSU. First impressions? I'm in good hands. It was a long visit, but I talked to the nutritionist, social worker, nurse, RT, and doctor.

The waiting room was a little scary... the clinic is located near where Vegas starts to turn scary... the area that any large city has. My Portland clinic is far from this area, and Eugene isn't big enough for an area like that, so it was a change to be sure... but once back in the clinic (though I do have to say the check in people were very nice), it was made of awesome.

I was called back into the clinic area, when I got the good ol weight... still sucky... 104 lbs, leaving me with a BMI a hair over 18. My o2 sat (the amount of blood cells that are saturated with oxygen) was 96%, which was surprisingly good for being at the higher elevation of Vegas and with as coughy as I've been lately.

Then I talked through my CF with the nurse... then time for my PFTs. Given how junky my lungs have been, I didn't hold out much hope. Yet, I saw the best numbers I've seen since May, and the third highest I've had in 2+ years. WOOO HOOO! Even though this clinic uses a different predictor model, even my raw numbers were up. Hello FEV1 of 38%.

Then more meeting of people, more talking, more seeing where we needed to go. They were encouraged that I am seemingly stable. Concerned about my problems with malaborbtion, despite being on a very high enzyme dose. So, to address it, I'm trying one week on the newest enzyme, Zenpep, to see if it makes a difference. I'm also going on a course of cipro to address some low lying infection issues, as well as trying singular for SOB issues.

Also on tap is getting my yearly bone scan and doing yet another night time o2 study to see if I need it!

You may think less of me, but this is what I think...

2010-01-09T13:16:00.000-08:00

My friend Sarah, posted a link to this blog written by a breast cancer survivor about the recent meme that has swept through facebook. The one where women post their bra color in the name of cancer awareness. I participated (bright blue byt the way), but like many things on facebook that are the definition of "flash in a pan", I didn't really think that it would raise much awareness about breast cancer. But, of course, with anything, people are sensitive to it.

The blogger wrote about feeling left out from this meme, that was to raise awareness about her own disease. How it's insensitive to those that have lost their breasts to cancer, because they have no bra to wear. How life is radically changed for them because of the lack of boobs. Part of me feels for them, but a even louder part of me says "Boohoo". Why this shocking lack of compassion, from me? Because I would give up my hair, my breasts, even a leg to have a chance at being cured. But it's not that simple with CF. You can live without boobs. You can live without hair, get by without legs. You can't live without lungs.

Yes, cancer is tough. Chemo, radiation, surgery, and a radical jump from normal life into the world of the sick. You are guaranteed nothing about the outcome, only sure that the journey will be twisty. It's the path that I and all my CF friends walk every day... however, we all know where our journey's outcome will be... death by CF if something else doesn't get us first. Even with secondary cancers, a loss of normal functionality, and a number of other complications, it's not all or nothing with cancer.

Then as these thoughts, these emotions of "I would kill to be able to walk your journey for a cure", I feel horrible for lessening the suffering of another human being. For thinking that they just need to get over their lack of boobs because they are alive. Guess what, clothes don't fit? Oh well, you are alive to wear those clothes! Get funny looks in public because you don't fill out your top, or your hair is only an inch long after chemo... you know why, and you can be proud that you can be out in public. I'm not saying that the blogger in question, or any cancer survivor that is alive isn't absolutely grateful to be alive, but complaints about cosmetic issues that are the sole reason that they are alive really, really hurts me. Because I can't go down and have a body part removed to be healthy. Right now, I'm locked into a life that I will slowly get sicker and sicker. Until I need a lung transplant... where I am waiting on someone else to die... so I can throw my own Hail Mary at life. One, just like any cancer surgery, does not have a guaranteed outcome. But unlike a cancer surviver who gets the label of "cure" after 5 years of no evidence of disease, a lung transplant patient has a 50% chance of being dead at 5 years. If you are alive, you still take handfuls of pills a day, still have to be afraid of every germ that comes your way, and get regular scans to see if the very drugs that are saving your life may have caused cancer. How's that for irony?

I want to shake myself and day "get over it Talana"... at the same time wanting to shake these women that are alive and say "get over it, you're alive"!

Or every year, during childhood cancer awareness, it is common for people to post that cancer kills more than a number of other diseases combined... CF being on that list. I want to vomit every time I read that. Vomit at kids being lost at a cruel killer... vomit at the fact that these kids have a chance at a cure, when CF kids don't, so why are we even equating them. That they deserve more awareness because there are more children dying of cancer? A child dying of anything is not okay. Saying that you deserve a cure because it kills more, at the cost of a list of other diseases? The logical part of me knows that probably isn't what they are saying... but the emotional knee-jerk side callously says "I'd take a child sick with cancer over one with a 100% death sentence." And then I vomit on myself a little for thinking that.

So maybe I should make my own meme... what color of mucus are you coughing up today... post the color in your status for CF awareness... (pea soup green), though it may be insensitive to my CF friends who have new lungs, who don't deal with mucus anymore, but still have CF, but hey, I don't think they'll care that much.

It's been awhile...

2009-12-09T21:34:00.000-08:00

a hard while.

Several friends have died of CF. Close friends... ones that I'm not sure I am even ready to process their passing, and am frightened about my own well being... one was even healthier than me... before she came down with H1N1. Each deserve their own words, when I am ready... and tonight I am ready to give words to Paul Mooney, lovingly known as Q.

Q helped me earn back confidence as a writer. As somebody who actually knew the English language. In college, I has a professor who basically destroyed any confidence I had in writing and a good chunk of my self worth.

Q, as the gifted writer that we know him to be, helped me rediscover the writer that I was before that professor. The girl, who while may not always have pitch perfect grammar and spelling, is able to turn a phrase in an unexpected way, bring home a point, and find a unique voice among common words.

The fact that Q, as this gifted writer, and a professor in his own right, valued and sought out my opinion about issues related to writing... I don't have the words to really express what that meant to me.

Thank you Q, for making me feel like I had some worth... I may even be able to finish that book, in your hono

Another moving box...

2009-11-12T16:19:00.001-08:00

Less than a month until the big move!

- Posted using BlogPress from my iPhone

2009-11-11T19:52:00.000-08:00

Please pray for my Eva tonight... she's in the hospital, not able to breathe... she needs new lungs. 2 year post transplant they are failing her. This girl means the world to me... below is Jess, Eva, and I at the Vancouver premier of the documentary about her transplant 65_Red Roses.

4pm

2009-11-11T16:12:00.001-08:00

Means wiggly cuddle time in Itsa's world.

- Posted using BlogPress from my iPhone

A confession

2009-11-11T02:41:00.001-08:00

I have been terrible about my treatments lately.

2009-11-10T00:26:00.001-08:00

Lizzie is my official neb and vest buddy. She will come running when she hears me start and will hide under my blanket, curl up on my lap, on snuggle beside me. I think she knows she has her "lady" sitting still for a long period of time.

- Posted using BlogPress from my iPhone

2009-11-05T23:09:00.001-08:00

Tonight will be quick, since I am already in bed. I do have to say that I really do have wonderful friends. I often struggle with the insecurity that no one really likes me. Nights like tonight show me differently.

CF Sucks

2009-11-05T00:27:00.000-08:00

Already this month we've lost two in the CF community... two... and we're barely 5 days in.

Will's journey is one that I've been following for some time. He desperately needed lungs and received them over a year ago. Sadly, his body never really took well to them. He spent months on the vent, clinging to life, lost most of his sight, and also had severe kidney damage in the process. But rather than quitting, he kept fighting. He made it off that vent. He made it home. He made it to basketball games, his love, and he got to cuddle his sweet niece. And then today, he's gone. Nothing was easy for him, but I've learned so much through is blog about living to the best that you can with what you have. Will showed that tenfold.

Lauren was someone who was very involved in the CF forums, using her voice to offer encouragement, faith, and knowledge to other cystics. Her and her husband were an amazing example of a relationship that worked with all of the hassles of CF.

There are also so many that are so desperately sick right now that need prayers. One of my dear chat friends is on the vent, another is in the hospital with high fevers, and so many others are struggling with complications... it just freaking sucks.

H1N1 Shot!

2009-11-04T18:35:00.000-08:00

So I missed yesterday... I chose to believe that the 3rd of November never existed.

Today, I had an adventure... I went to my local H1N1 shot clinic!

The county health department was offering shots for high risk groups at local schools this week. Knowing that we have MANY CFers very sick with H1N1 and some that have even lost their battle, I really wanted to get my shot ASAP. The clinic at the high school a mile down the road was open from 2-5. I showed up at noon... and was already about 70 people back in line.

I took my seat, between two parents getting shots for their asthmatic kids. I sat, played on my iphone, knitted (to which I was asked if I was doing needlepoint, ah men), and talked some with those around me.

Then some county health officials went down the line and asked why you needed the shot and handed out consent forms, based on if you were in the nasal mist category or the shot category. Cystics are the shot category, since even the weakened virus is not good for us.

I was hoping that if I had paperwork in hand, then I would be guaranteed a shot... but the county had a big debacle early this week because the city they were in gave out tickets, which the county didn't offer and they had people fighting over vaccine, so I took nothing for granted.

At a little after 2, after 2 hours in line, the line started moving forward. Those at the back of the line were turned away because they didn't have enough vaccine, as shown by they didn't have any more forms. Hope went up in me that I would get my shot.

Then slowly, slowly, slowly the line moved forward... finally I could see where they were giving the shot. I had to stand for forty five minutes, waiting for the backlog of people in front of me to clear, then I got screened again. Then in the line of screened people. We all were chatty here, where one old man gave me a line I think all us cystics should bother... "I have lungs like a parakeet!" It's so true... after a bit of chatting, then waiting... I GOT MY SHOT!

I'm proud to report I have not oinked yet.

So four hours,

New Kitten

2009-11-02T22:40:00.000-08:00

One of the many things to happen during my neglect of the blog was finding a new and wonderful little kitten!

Our house backs up on a small green way that is a city park. We noticed this summer that a very small kitten was coming out of the park into our backyard. She was terrified of us, but also very curious about us humans, and would sometimes show off, playfully flirting from the safe distance of 20 feet away, then 15 feet, then 10. Through about three weeks, she slowly trusted being around us more, until she was coming up on our porch to eat the dry food we provided. Matt worked very hard with her to gain her trust, and slowly but surely, we finally were able to touch her. Around this time, she started limping very badly... and a pack of raccoons was stalking our porch at night, so we scooped her up and brought her inside. To say that she loves her new life would be an understatement. She loves cuddling with us, playing fetch, and just living life. She has an endless fascination with human food, and is unafraid to try any new taste... going as far as trying to steal white chocolate from my purse, popcorn from my bowl, and cheetos from the bag... all of which rank high on her list of best foods in the world.

Lots to talk about...

2009-11-01T23:51:00.001-08:00

More in the morning, but count this as 1/30 in my attempt to blog a little every day of November....

2009-10-07T14:13:00.000-07:00

It's been forever!!!

First off, United drama has been resolved. I'm not 100% happy with the solution, but at least they did something, which is better than nothing. Basically they technically did not break the law, but realize I was very upset about how I was treated and gave Matt and I each $150 towards future travel. Getting the baggage overcharge on our return flight was VERY difficult, and involved over 2 hours on the phone for me, 4 phone calls, multiple failed promises of a supervisor calling me back, then them offering me less money than they owed. Finally they resolved it as a "one time thing" which is idiotic when it was THEIR system that failed...

Anyway, I digress....

And leave with a huge teaser in news....

Come December, I will be leaving my beloved Oregon, and will be moving to Vegas, following my husband's job....

More later, because I need a reason to blog!

More United Drama

2009-09-07T18:56:00.000-07:00

So I am yet to hear back from United... but they added to their problems with our return flight home. Safe to say they will be getting an earful from me tomorrow, and if they choose to not act, I will be going to the media.

So, for our return flight, we decided to just check our bags, as we really didn't feel like dealing with drama. We were both tired, stressed, and since we already asked for a total of $80 to be refunded, we figured we'd check. I used United's online check in portal at the business center of the hotel. With two checked bags, one for each my husband and me, the charge was $22. Why this is cheaper than the airport is beyond me, as it is the same amount of work on their side, but they'll do anything to get a dime off someone after it's too late to go the cheaper route. We use the credit card to pay the charge that is on the screen of $22. Then I look at the receipt that printed out... one bag for my husband... three bags for me... total of $168!!!!! I never said I had 3 bags, and I was displayed a charge of $22. Luckily the money is in the account, still, this holds up some of our money when it shouldn't be. We brought our issue to the ticket counter at SFO, where we were informed that they cannot issue refunds at the airport and I needed to call their refund line... which is closed for the holiday weekend. The ticket agent made it sound like the process should be easy, but since the receipt clearly states that "baggage fees are non-refundable", I doubt it will be easy.
Also Ted misquoted the amount that we would be charged for our bags. While he said we was charging us $20 for each bag, for a total of $40, something he confirmed when he handed us the receipt, they were really $15 each for a charge of $30. This was because we bought our tickets before May 14th according to United's website. Ted did not lie to us per say, but I really feel uncomfortable that he didn't know what he charged us, and didn't pay attention enough to know it was a different amount and let us know. He could have told us that the charge was different, but didn't. What if it was higher instead of lower? Would we have had no idea?

Tomorrow I will be contacting United. We'll see if they decide to atone for their mistakes or force me to go to the media.

I know I haven't blogged in forever...

2009-09-02T22:28:00.000-07:00

but I felt I needed to make public the treatment from United Airlines today. The following is the email I sent to their customer service department. If I do not hear back soon, well... I think I make it clear in my email.

I am writing to complain about the treatment I received by your agents before I even boarded the plane. I fly frequently, but have never been forced to pay for having medical issues. Today and your airline marks the first time.
I was born with Cystic Fibrosis, a medical condition that requires me to follow an intensive medical regimine. To go on a five day trip, like I did today, I have to carry several bottles of pils to accommodate the fifty pills that I take a day. I carry a compressor, several nebulizers, and a small cooler for my inhaled medications. I also carry a large medical device, called a vest, that I must use twice a day. All of these items take up a significant amount of room. My vest alone is a large carryon item, one that I can not use for other items, medical or personal. This leaves me to use an additional carry on for all of my other medical items and, if I am only going away for a short time, my personal items as well.
My husband and I arrived at the Eugene airport with our bags. We have used these bags previously on United as a gate check and have never encountered a problem. In the past when the number and size of our bags has been questioned, a quick explination of my medical needs was all that was needed. This time proved very differently, and was the first time that I have ever seen my legal rights as a medically handicapped person infringed upon.
My husband and I were approached at the gate over the size of our bags. I explained that two of them included medical equipment, which is why I had them my possesion. The gate agent repeated that they were too large to carry on and they must be checked. I simply refuse to check medical equipment as a rule and am in my legal rights to do so. Upon further pushing, I conceded that the bags could be checked, but charging me to do so could be grounds for a disability lawsuit. The gate agent rudely informed me that I did not need to go to that point. I have never been rudely informed like that when standing up for my rights.
The gate agent called over her supervisor, Ted Dewey. Ted informed me that the bags must be checked because they included personal items. This brings up a number of issues. First, my bag would not be as large, without the medical equipment. Secondly, I have always had my first bag fee waived by other airlines that realize my medical equipment is what pushes me over. They are willing to accomodate me, and follow the laws set up to protect me. Ted was unwilling to do so. He offered to bring me a bag out of their storage for my medical equipment, but this was not a feasible solution for a number of reasons. First, I did not feel comfortable unpacking my bag in the terminal. It is carefully paked to protect my medical and personal items. Second, I would still have the large bag in question, now poorly packed lending my personal items to damage, and I would still have to pay the fee, as Ted informed me he didn't have to make any accomodation for my personal items. However, again, these personal items would not be an issue, if it were not for my medical equipment. Ted semmed oblivious to this issue. Thirdly, by being asked to unpack in the terminal, I felt as if I was being asked to prove my condition. When you don't look sick, people in authority often feel the need to have sickness proven to them.
My husband and I feel like we have been discriminated against. We know that the lack of accomodation is grounds for an ADA lawsuit. Not being litigous, we wish to avoid that, but are willing to take nescisary steps to ensure that we are compensated for our baggage fees, and the time it takes to reach a resolution on this issue. Fair compensation, at this time, would be a full refond of our baggage fees, which will total $80 after our return flight on Sunday. We are uninterested in vouchers for future travel, as we are unwilling to fly an airline that breaks laws to make a dime off of the disabled. Also, we may take our story to the media, as we feel that other people should be informed at how far United will go to make money. I was reminded at how greedy an airline could be when Ted informed me that accomodating a bag could lead to $100 price hikes, and I should feel lucky that I only was paying $20 a bag. Amazing how that doesn't add up, but little in this day did.

Peru!

2009-05-18T20:16:00.000-07:00

More photos can be found - here

After two not so fun days at sea where Matt got very very sick... and needed on board medical intervention... and lots of time in bed... we arrived in Peru.

I noticed something was amiss when I woke up because we weren't docked... and there had not been an announcement of what deck we would be debarking from. Turns out, they thought we were a plague ship! Depending on who you listen too, the authorities thought we were coming from Mexico and were possibly infected with the swine flu. The other account is they needed to inspect everyone from Mexico for signs of the swine flu. Regardless... it took over an hour to clear us that we were able to dock and not infect the entire country. There was a media circus on the dock... and everyone had masks and gloves and such to protect themselves from us.

While we waited to see if we were allowed in the country, I took some shots of the fog that surrounded us...

By the time we were allowed in port, look how clear it was!

We then boarded a bus that took us from the port city of Callao, right next door to Lima. On the bus I saw some pretty interesting things...

First, the Eugene child in me was impressed by the number of bike paths... even divided from the main road.

I don't think I want to know why there is a fish in the back of that car... I just... no... I don't want to know... or smell...

The guy standing beside the car? He was selling soda. There has been more than once stuck in traffic I probably would have killed for someone to do that.

I liked the message... basically along the lines of God, my mom, and you are my three loves.

Did I mention that people in Lima don't know how to drive? Our entire trip was a 30 mph white knuckle journey of cars making up their own turn lanes... pulling out whenever they wanted... it was... wow.

Sadly most of the downtown area of Lima is very rundown. Hardly anyone lives there and the great old buildings are going to ruin.

Even though this was not in a great area, I thought it was a really cool hotel.

Our bus took us to the central square in Costa Rica. The main Catholic church for Lima was here along with the government building. Some shots from the square...

Then we got back on the bus... we headed towards the craft market, winding through some areas of Lima that are more tourist friendly.

Reading... while driving...

Soccer stadium...

Craft market...

Scenes around the boat after we got back.

When we got back to our room, we noticed we had a "friend" on our balcony.

And our towel animal...

Sunset at Sea

2009-05-13T22:33:00.000-07:00

We had a number of great sunsets... this one was on April 29th, between La Serena, Chile and Lima, Peru.

And for your viewing pleasure... a video preview of what we saw in Lima...

La Serena, Chile - Recap 2

2009-05-13T15:45:00.000-07:00

First a quick answer to a question - All my panorama shots were taken with my Olympus Stylus 1050 SW digital camera. I bought it for the underwater capabilities, but discovered it also has an awesome feature that allows you to put together panoramic shots with a handy screen guide.

Larger versions and additional photos can be found HERE

First the ubiquitous muster drill photo!

After a overnight sail, we arrived in Coquimbo/La Serena, Chile. We had booked an excursion up to the big telescope in the area, but it was canceled... which made me super sad because I love astronomy.

So, we took advantage of the free shuttle to downtown La Serena.

Our boat!

Scenes from La Serena

We stumbled upon a parade!

Then I bought this beautiful hand crocheted sweater...

Next was lunch at the market...

Entertainment for lunch was provided by watching people come and go from the market.

A video to break up these photos, of the first part of our morning...

Then we took a walk around...

And found a long park with the best sculptures EVER!!!

Why yes... I do work out!

Why... hello there!

I think he may be auditioning for a deodorant commerical...

After the ladies...

Oh did I mention Matt was on the trip too?

A panorama of the park

After our long walk, I was exhausted, so we caught the shuttle back to the boat. While in La Serena, we found some pictures of some murals that Matt really liked but I was too nervous to ask a local where to find them... well guess what we spotted from the ship.

Some other views from our ship in port and departing...

And last, our towel animal of the day!

Swine Flu

2009-05-12T17:21:00.001-07:00

Okay... I think I win on Swine Flu experience...

So lets see... what have I experienced in the last 17 days or so because of it???

Arriving in the Santiago Airport on April 26th. We got the unique honor of following the mask distributor through customs. He was giving out one to every employee... despite the fact that all the flights coming in at that time were from the US and at that point it was just barely exploding in Mexico.

Getting on the boat... finding out that our Mexico ports may be in jeopardy.

Arriving in Lima, Peru... our boat was stopped, not allowed to pull into port until investigated by the local health authorities. All the media was there (We freaking made it onto CNN international). According to the cruise line they thought we were coming from Mexico... according to the media accounts that I've read in Spanish, they wanted to investigate all Mexican citizens on our boat. Add to that the fact we had to call ahead for an ambulance because of a hot appendix, and well... it was a scene. We get off the boat finally, and all the port agents and vendors and such are wearing masks and gloves. Some of the tour guides were until they realized how ridiculous it was, and if we were exposed we'd all be sick by now and not touring around Lima.

Matt and I thought that we were going to be inspected, because my hubby had spent the past two days confined to quarters with a bad stomach bacteria that caused so much vomiting and diarrhea he needed 3 bags of saline and IV Septra and oral Cipro. Thank GOD I did not catch this!

In Ecuador, we also got the mask and glove treatment by a lot of port agents. By this time we also were told that we were not going to be allowed to go to Mexico... even though there were no cases in the areas that we were headed. I'm okay with that... but it sucks that we were going to miss 3 stops in a 7 stop cruise.

At Costa Rica we had to tell the health inspector if we had been coughing recently. Yes. I lied through my teeth. The worst was when we were later walking past the inspection station and I NEEDED TO COUGH a good juicy CF cough. I managed to hold on to it until we were out of range... but still... OY!

Then we got to enjoy 5 days in a row at sea avoiding Mexico, getting into San Diego a day early. But the good news? Matt and I will essentially be getting a free cruise. Because of our missed ports, the cruise line is offering us 25% of what we paid for this cruise towards a future Mexican Riviera sailing. Since they are a lot fewer days, they are a lot cheaper, so 25% will go along way. Then because Matt was confined to quarters for 2 days, they will be giving us credit for 2 days of our cruise applicable towards a future sailing. Oh, and we both have $300 travel vouchers on Delta.... lets just say we have a free vacation in our future!!!

Oh an not to mention when I'd get a good cough on the boat and people would start looking at me, I'd get to have the "CF talk" because face it... I'm spending 16 days with these people... they are going to notice!!! This was made easier by offering myself up as a "make-a-wish" poster child for their fundraising on board...

And Off We Go - Recap 1

2009-05-12T14:40:00.000-07:00

Here goes... A trip in review, spread out over several posts...

April 25th, 3 AM, Eugene Airport.

The Luggage is Ready to Go! A large checked bag for both Matt and I, two small carry-ons, my vest bag (also carry on) and my big purse of entertainment.

However, I am not impressed by 3 am. I am even less impressed because I had not slept all night/day.

So you want an idea what the Eugene airport looks like at 3am? Empty. No one in the one baggage claim, no one at the desk... no one at security...

Then we were on layovers... I knitted... Matt read. My knitting was really a bag to carry IV balls in, but I figured it could be a hat too!

After our flight to Atlanta, then a 10 hour flight to Chile, we ARRIVED! The customs area at Santiago was very crazy, with very little signage to tell us where to go... but we made it through. I had a small panic attack when the drug sniffing dog decided he needed to sniff... right where my marinol bottle was. Apparently synthetic THC was interesting to sniff for like 5 minutes... but not enough to trigger him to signal his handler... PHEW!

A few views from our bus trip to the ship, which took about 2 hours on a bus that could not climb hills... which was an issue! We did however get to see great valley vistas, wine country... and a lot of little roadside eateries.

Arriving in Valparaiso, Chile...

Finally off the bus... we got to sit in the terminal at the ship... and wait to board. Then go through line. Then finally ON THE SHIP!!!! Where we got to wait in the buffet for our room to be ready. Matt took the opportunity to nap, while I wandered around, met people, went to a talk about La Serena, Chile from the most crotchity old woman ever who was so unberable a number of us left early!

And lastly the views of the port from our room!

Chile here we come!

2009-04-25T00:59:00.000-07:00

Leaving for the cruise in 2 hours! I'll post when we get home in May!

Finding Jenn Project

2009-03-04T01:39:00.000-08:00

In memory of my dear Jenn, I have started The Finding Jenn Project.

Please visit and pass it along!

2009-02-23T01:29:00.001-08:00

2009-02-20T17:25:00.000-08:00

2 weeks ago she died....

1 week ago I was at her service, so many miles from home...

And today, I had my worst lung function tests, I think ever. FEV1 of 32% I think. Ugh. My CF team is not worried yet, as I look good, and I feel good, and I am having a definite flare in my sinuses that may be compromising my lungs. Also given the tests were the first thing in the morning, when I always have trouble. So since I still feel good, we are trying 2 weeks of Cipro and a month of Septra, both oral antibiotics. Hopefully in a week I won't be coughing as much. I am also being referred to have a sleep study as I think I may be dropping my oxygen saturation at night. I am always sore and achy, I have some headaches, some blue fingertips, and it just makes me wonder.

I know, not a good update. But really, the facts sound harsher than the reality. I still don't feel bad. I was able to play with my "nephews" in Portland, the lovely sons of my long time BFF (one of two) Jenn, lug my luggage up the flight of stairs and back down, drive myself to clinic, and not feel terrible doing it. I am sore now, but that is becoming more the norm that I just deal with until we can find the root of it. I am so thankful that my life is in a good place right now. That I have so much love and support around me, and that I feel good to enjoy what I have.

How you can help

2009-02-17T17:46:00.000-08:00

I've had a lot of people ask me how they can help after the passing of Jenn, either with donations of monetary or fiber. I do have a project that I am dreaming up, but I first am going to get permission from her family that they are willing to let her memory be used to support other CFers.

There are two ways to do a monetary donation. I am aware of a large donation already going to the Cystic Fibrosis Foundation in Jenn's name. If you choose this option, her full name was Jennifer Walsh, and the family should be made aware of this donation, even without her address (which I do not feel comfortable posting). Her local chapter was the Massachusetts/Rhode Island Chapter.

You can also donate through my walk for CF, this May in Eugene, Oregon. I'm walking in honor of Jenn this year, and you can find my page over here.

Again, I am in the process of creating a way for knitters to help, a charity knit or crochet that will be a way to reach out to CFers, something that Jenn strived for.

Jenn's Service

2009-02-15T14:12:00.000-08:00

I am home, and it was a good trip. I think that I needed it in a lot of ways. Below are some pictures, I'll write more when I get a chance, but Matt and I are headed out the door here in a moment.

Sunrise from cruising altitude.

Knitting my flight away.

My beautiful friend.

Memory Table.

Amy and I, representing Jenn's online friends. It was amazing to meet her, and we had a great time, despite the circumstances.

Her family and friends are absolutly amazing as well. :)

Boston Here I Come

2009-02-12T06:52:00.000-08:00

Early mornings are not my friend... and I forgot to pack a mask for tomorrow for when I encounter CFers...

But I'm on my way.

Still Blank

2009-02-08T15:20:00.000-08:00

I feel like I need to write something, but I have no idea what that should be. Just watching the cursor blink, trying to figure out what I should say... how i can express how I feel.

Right now, I can't imagine what her family feels like. With CF, you always know that early death is almost inevitable... but it's not supposed to come so swiftly.

I spent yesterday, finding all the places that I knew her. Looking at pictures. Tyring to figure out if she left with any regrets. Trying to figure out if I left anything unsaid. I don't think I did. But that doesn't really comfort me right now.

I am taking care of myself... I'm actually doing better about doing that right now. I keep trying to think what I can do to make myself feel that I am honoring her. That I'm doing what she would want for me. Right now, that's taking care of the physical the best I can, while the emotional works its way through.

She's Gone...

2009-02-07T14:05:00.000-08:00

The miracle didn't come...

She died yesterday morning...

I don't even want to think about it...

Because I'm scared the tears won't stop...

I should be comforted the pain is gone...

And that she is in a better place...

But that all seems like ways to ignore...

How crappy this really is...

A Boston bound plane, may find me soon...

To go to the service of a girl I never met in person...

But loved so much, and miss so much...

It's really not fair.

The 100th

2009-02-05T00:33:00.000-08:00

I noticed this is my 100th post on here. I wish I could celebrate, but I don't have it in me. Jenn is still on this side of forever, but it's hard to know for how long, or if the miracle will come. I tried to exist normally today, and for anyone not looking too hard, I did. But I hurt. I hurt really bad. And I don't want to talk about it, or acknowledge it, or anything, because that will make it real. And the more real it is, the more I feel that I have already given up on her, and I can't do that. I have to hope against hope, because she would do the same. I don't know what will happen. But right now, the middle ground? It sucks.

Praying

2009-02-03T15:14:00.000-08:00

The hazard of being connected to the CF world, is the inevitable, that we are all living with a fatal illness that shows no mercy. Usually you can slowly see it coming... the progression of CF is usually slow, steady, and you can prepare.

But I'm not prepared at all. Right now, one of my closest friends with CF is clinging to life in Rhode Island. Jenn had been in the hospital for the past month, working through a number of health issues, and was improving. Then a few days ago, she had a very bad lung bleed. Currently she is in ICU, vented, and it doesn't look good. I am praying with every fiber of my soul, but I am in so much shock as it came from nowhere... and it's MY JENN. Someone that I bonded with so much, though we've never met in person. The cruelty of no warning, nothing, no preparation... it hurts so badly. She is in the process of getting listed for lungs, but now that chance, a chance for new life, may be gone. It just hurts too much.

Hi!

2009-01-27T16:54:00.000-08:00

I know, I'm a terrible blogger!

But life has been pretty good over here. It took me awhile to physically recover from our trip, especially the unexpected monkey wrenches with staying overnight, especially in the thin air of Salt Lake City.

But I do have some amazing news...

In April, Matt and I will be going on a cruise! My lovely, wonderful, amazing, God sent husband, got us a cruise from South America to San Diego for my Christmas gift... I can't wait, and as an incentive to blog, I'll be writing more later.

2009-01-16T14:27:00.000-08:00

Thanks to Piper who tagged me on her blog, I get to join in on the photo fun. The rules are pretty simple:

1.) Go to your 4th folder where you store your photos.

2.) Select your 4th picture (no exceptions)! Seriously.. no exceptions.

3.) Post the picture with an explanation and link it back to your tagger.

4.) Tag 4 people to do the same!!

This was Matt's and my first Halloween together, just a few weeks after we got married. His pumpkin is on the left, mine on the right!

And I tag...

Froggy Momma :)
Becky
Jess
Sarah

How to get back to Eugene in 30 hours

2008-12-29T10:48:00.000-08:00

Take my last entry... replace the long delay due to fuel line on plane with lacking crew but having plane, make the location Atlanta. Then take the overnight in Cincinnati and replace it with Salt Lake City and you have a rough story line of our trip back.

But... we are home.

How to get to South Carolina in 30 hours

2008-12-20T10:33:00.000-08:00

So we are in South Carolina, but it definitely was not the smooth trip that I wanted! Prayers worked for clear weather in Eugene. It warmed late Wednesday, then rained all night, not dropping below 35 degrees. We arrived at the airport at 4 am, got through security no problem, then boarded our plane on time, and left Eugene at 6:05 A.M.. On to Salt Lake City we headed, grateful for our good fortune with the weather. We arrived at Salt Lake City, where our smooth trip went down the drain. Our connecting flight to Cincinnati was delayed about an hour because they needed to fly a part in from Atlanta. We settled in the chairs at the airport, knowing that with the delay we'd miss our connection. The airline had already rerouted us to go to Cincinnati, then Atlanta, then finally Charlotte, and also put us on standby for the final direct flight from Cincinnati to Charlotte. We knew it would be a much longer day, but had faith we would make it.
Well... then we watched as our flight delayed further. Then the part from Atlanta did not work. They then decided to replace the entire fuel line of the plane. An hour longer of repair turned into a half hour longer, than a half hour more. Finally 5 hours after our flight was scheduled to depart, they decided that the plane in fact could not be repaired in a timely matter... and they got us another plane. At this point, everyone on our flight was unable to get their connections in Cincinnati. We landed in Cincinnati at nearly 10 PM... where we were sent downstairs to collect our accommodations in local hotels, paid for by the airline since it was their fault that we found ourselves in Northern Kentucky. Yes, you read that right... the Cincinnati airport is in Kentucky. We "lucked" out with our accommodations and ended up at the Hyatt. Some of our fellow "distressed passengers" were sent to budget inns! We also were unable to lay hands our our checked bags... so all we had was our laptops, my medical stuff... and well, that's about all! Matt didn't even have his coat, figuring the bulk of our time outside was spent in Eugene, so he checked it! 32 degrees and waiting for a hotel shuttle was not fun for him! The airline provided us with a small bag with a toothbrush, hairbrush, a packet of toothpaste, q-tips, cotton balls, a t-shirt, and most baffling of all, a packet of laundry detergent. I suppose they expected passengers to find a washing machine and wash the clothes on their back while wearing only a t-shirt? The visual image of that had me giggling pretty good.
After a short rest at the hotel... where my body decided I was napping and not sleeping, so I didn't sleep much at all, we found ourselves at the airport at 615 am, ready for our 8 something departure to Charlotte. At this point I wasn't sure what time it was, let alone what time zone I was in. It's a good thing we got out of Eugene, as the weather turned nasty again after we left, dumping more snow on the city that sees it maybe once to twice a year, and almost never before Christmas.
Our plane in Cincinnati boarded a few minutes late, but we thought we were finally on our way... only to get stuck on the tarmac waiting for a place in line to take off... then Charlotte grounded all incoming flights for fog... finally after sitting on the ground for about 30 minutes, we took to the air... and finally arrived in the Carolina's... only a day late!

But we are here, and happy!

Snow

2008-12-15T17:14:00.000-08:00

It snowed last night and today! I love the snow, but hope it doesn't interfere with our travel on Thursday. Right now they are calling for more snow and freezing rain on Wednesday night and Thursday, so things don't look so good! But I'll enjoy it while it's just pretty and not messing up my plans!

Hiya!

2008-12-07T15:34:00.000-08:00

I know I have not posted about my health in awhile, so I'll be doing that, after I make a few random musings!

First, as to my last entry, Carleton University did reinstate the CF Fundraiser. This, however, was not the biggest issue in my mind. It was the terrible spirit in which it was removed, the lack of research that went into it, and the lack of foresight by the students of the board to not realize how badly the motion would reflect upon them. The writer of the petition has since resigned, but it took nearly a week before any real apology was issued by any of the principle people involved. That to me is disgusting. But I digress...

On the non-health front, life it pretty darn good. My roommate Richard moved out, leaving just Matt my husband, myself, and our roommate Tyrone. A change, both good and bad. Thanksgiving was at my house, celebrated by Matt, Tyrone, my parents, my Grandma Vickie, and my Great Aunt Flora and her daughter Susan. Food came out very well, and then I spent 14 hours sleeping off my hard labor :) This Christmas will find Matt and I, along with my parents and sister in South Carolina at Matt's family. It will be the first time that they've really met, as only Matt's mother and aunt were able to make it to our Reno wedding. I am so excited for this trip, as the days tick ever closer. I love Matt's family so much and I'm so happy to see them and have one big meeting of people that I hold near and dear to my heart.

On the health front...

The last several weeks have been tough. I've not been well, but I've not been sick. It started with a severe cold a few weeks ago, that settled in my chest. I was never sick enough to say "I'm sick and I need antibiotics", but I was also never well enough to really feel good. With our upcoming trip, I decided that if I was not in top form, I'd get really sick, so I went on oral antibiotics and prednisone last week. I feel a lot better... better than I've felt in a few weeks :) Pray that my body can handle the long trip and the stress that undoubtedly comes from being away from the home environment.

Major CF Misinformation

2008-11-25T13:52:00.000-08:00

Hey all,

I came across This Article from Carleton University in Canada. Apparently, they dropped fundraising for CF because, "It primarily affects men and exclusively white people". The inaccuracies of this statement are so amazing, that I am flabbergasted it would come from anyone, let alone those going to University. I wrote a letter to the student newspaper, and I encourage all of you to do the same. Below is a copy of my letter.

To The Student Board of Carleton University,

I am writing about your recent decision to drop fundraising efforts for the Canadian Cystic Fibrosis Foundation. The facts used to make this decision are so off base, the action taken is deplorable. The presentation summary alone was full of misinformation and a such a lack of factual basis, it is shocking to me that it comes from a University organization. "And Whereas Cystic fibrosis has been recently revealed to only affect white people, and primarily men." Cystic Fibrosis is an inherited condition that affects men and women equally. The cystic fibrosis gene is carried on the 7th chromosome. It takes two bad copies of the gene to cause CF. Anyone with a basic understanding of biology would know that this has nothing to do with sex. How the writer of this proposition got this idea is beyond me.

It is true that CF primarily affects those of Western European descent, but this is not always the case. I could point you at the Stenzel Twins, who are 50% Japanese. I could point you at Milan, an African American girl living with CF. You could even visit the American branch of the Cystic Fibrosis Foundation and find the entire site translated into Spanish to address the ever growing population of Hispanics with Cystic Fibrosis. Straight from http://www.cff.org the website for the Cystic Fibrosis Foundation it states, "The disease is most common in Caucasians, but it can affect all races.". To further provide researched statistical data, I have provided a breakdown of races and their chances of having the CF gene.
Chances of Being a Carrier
European Caucasian, Ashkenazi Jewish 1 in 29
Hispanic American 1 in 46
African American 1 in 65
Asian American 1 in 90

Changing a fundraiser to a different charity is something that unfortunately happens from time to time. However, doing so based on information that is so far from factual is absurd. It would almost be funny if it were not so hurtful to so many, from those that have Cystic Fibrosis, to those that care about someone to CF, to people who value making decisions based on fact.

You may be curious as to why a person from Oregon, who has never heard of Carleton University is writing. You may have guessed that I have Cystic Fibrosis, and you would be right. This letter is not out of anger that you decided to drop funding for life lengthening and someday life saving research, but the lack of facts used to make this decision. Being University students, you would think that you would value finding correct information. If any of you were to write a paper using the facts presented about CF, you would be failed in a heartbeat. Voting with such fanciful information is completely deplorable, and if I were at your university, I'd be asking for the removal of board members who believed it was okay to vote without any factual basis.

Lastly, CF research does not just impact CF patients alone. Because we are such a large group for a genetic illness, cutting edge genetic research is often started in the CF population. Research that could one day also cure Parkinson's, Multiple Sclerosis, and a number of other devastating genetic illnesses. The world is a community. Saying that one group is unimportant because they are not large, is a very shortsighted and dangerous point of view.

Talana Fairfax
Eugene, OR

Am I American Now..........

2008-11-06T23:24:00.000-08:00

I've stayed away from politics here. I prefer to have a lot of give and take when I talk politics, and it couldn't possibly be good for me to just go off on my own. If you feel you need to leave my blog because of this... than that is your choice, although I question the wisdom of only reading material that agrees. I spend hours each week reading material that agrees with my views, and does not. Small shifts happen in my viewpoints because of this, and I am able to feel stronger in my convictions. This most likely will be the only time I touch on this subject.

That said, I'm ecstatic. In President-elect Obama I see a quality that I've not seen in politics that has overlapped with my life... but I see the potential in him that I see when I look at FDR, Lincoln, or JFK.

That said... I'm disgusted by things that people are saying about our President-Elect now that it is over. First off, many off them are filled with a vitriolic tone that should never come out of the mouth of someone that claims they are Christian... sadly most do. A Christian should accept what has happened, because as they always say "all in God's plan". What if this is God's plan... no one is able to say. It is this hatred, the spewing of biblical passages to slander, that helps turn people away from faith. I believe in God. But when I hear the bible used to hate, to slam, to judge anyone that disagrees with a select group of "Christians"... I wonder how many people they turned away, if I am disgusted. I pray for these people, that use their faith to wage harsh judgments. Who walk around with a sense of superiority. Jesus preached to the least among us. He did not judge... and as a Christian I am led to not judge others. So instead, I quietly pray for these people. That they will look at themselves and see if they are helping people find light, or find another reason to turn away.

There has been another question ringing in my ears since Tuesday night. The last 8 years have been filled with the slander "unpatriotic" the second anyone dared to question a Bush policy. "Your either with me or against me". If I was not happy about something happening in this country, my love of it was automatically questioned. Strange, when the foundations of this country were built by those seeking asylum from countries that ruled with such policies. However, many that threw these labels, are now the ones saying they will never be able to work with Obama. That no matter what, they will not be happy. I've read probably 100 blogs, ranging the spectrum from left to right, red to blue, in the last few days... and I never saw the question of patriotism of those that "refuse to work with Obama" questioned (I'm sure they exist, but out of my sample, I was unable to find one). The Mary Sunshine in me would love to believe that as a country we have moved past using such a misleading term, but I know that probably is not true. Because those that fervently pointed their fingers with their lips wrapped around the word "unpatriotic" are now wrapping their mouths around words of hate and discord. But, I would never call them unpatriotic. Just as it was my right, dare say, my responsibility to evaluate and question my leaders of the last 8 years, it is now their turn. But I hope that they are able to set aside their preconceived notions, and evaluate Obama by his on the job performance and not from their fear. I speak from a land of experience here. I was terrified when Bush was elected... but the most dire, most frightening predictions, never came true. Remember that when you read predictions. Did I agree with very little that the administration did in the last 8 years... yes. But I also tried to judge each step along the way. As the 8 years progressed, I did not lose a love for America, but I did not like our direction. It is possible to have both.

And a quick note to what I read in several blogs today. That they would not vote for a candidate who was not anti-abortion, and that is why they would never vote for Obama. That is fine, as that is their choice, but McCain also does not support the abolition of abortion. Yet, I only saw Obama's name mentioned. I wonder if they did enough research to know, or played ignorance. If you are going to be "pro-life" then by logical reasoning, you should support all diplomatic options before engaging in war that is very anti-life. You should support the health of your fellow citizen, as so many die in this country because of everything from lack of access to health care, improper diet, often spurred on by economic conditions, to countless others that choose between heat, food, or medicine. I don't know if full government funded health care is the answer, but we obviously have one that does not work. We are only as strong as our weakest links... and when a person can be denied insurance for a pre-existing condition, a disabled person has to wait 2 years before they get any insurance help from the federal government, and children who go years without seeing a doctor because a family cannot afford it with or without insurance... we have a lot of weak links.

And to those who wonder how people who voted for Obama could be so blind... I wondered the same about Bush. I gave him a chance, now it is your turn to do the same. It's all I ask of you... but if you don't... you are no less American.

More Yucks

2008-10-28T16:23:00.000-07:00

So I definitely think that I had a stone. I'm feeling a lot better now, and all is back to normal in my back. However, right when the back pain started to die down, I have found myself battling a nasty sinus cold that has crept into my chest. Clinic is a week away, and I'm honestly scared to go. My breathing is shallow and painful... and I really do not want to do a lung function test (PFT). I may be back in a week, but I don't bounce back very easily or quickly anymore...

We'll see....

No Fun...

2008-10-20T22:52:00.000-07:00

I have not updated in awhile. I am working at getting better about it... after all I have 16 people subscribed to my updates through google reader which shocked and amazed me!

I need you prayers tonight. I am having a lot of pain that feels very much like a kidney stone. I went to the after hours clinic tonight, and despite one test showing blood in my urine, a second test on the same pee did not show it, so the doctor decided I was fine. Really, it was a terrible experience, and I'll probably go to my real general doctor tomorrow. I hurt so bad, and it sucks that I was completely dismissed... like he didn't even bother to care that I have a history of stones, CF, and can barely walk or think straight from the pain.

Fall Fun

2008-09-29T14:01:00.000-07:00

When you have an apple tree in your back yard...

Not good...

2008-09-18T13:28:00.001-07:00

So my culture that was "clear" for MRSA finally grew it. To say I'm upset would be an understatement. I just want to go and hide in bed and just forget about the world. 2 more weeks of home IV's now. I was really excited about getting off on Monday... now no more. I was excited that maybe all my prayers to kick MRSA had been answered... and now I just don't even know. I still have faith, but I also don't even know if I should bother to hope that this inscesant bug can go away. I'm just so over it...

A Million Prayers Answered

2008-09-13T23:59:00.000-07:00

So Friday morning, I was going about my buisness, feeling better, wondering if I would be able to get out on Monday. As early mornings are known for in the hospital, people were bustling in and out of my room... why hospitals think simulating Grand Central Station at 7 am is good for anyone's health is beyond me. Anyway, my nurse casually mentions that they are discontinuing my Vancomycin, one of the most powerful IV antibiotics, and one of the very few that have any efficacy against MRSA. MRSA... the big bad boogeyman bug that had the media all in a tissy in the last year has colonized in my lungs for the last few years. While it did not cause a great change in my health, it was a complication that was unwanted all the same. Once MRSA colonizes, it is very difficult to get rid of. So when it was mentioned they were pulling my vanco, my mind started reeling... could it be possible? Could MRSA not have shown up in my cultures? I eagerly awaited the med team arrival that morning. Sure enough, my cultures came back, MRSA free... and I gave an amazing sputum sample. While I am not saying that it is gone until I have a few more cultures under my belt... I feel like great prayers have been answered. I never prayed for my CF to be gone, as I would never feel okay if I was the only one cured, taking this one small burden from me was something that I hoped for in my darkest times.

With the news of my MRSA being gone, and my general energy level increasing by the hour, my cough no longer roaring, and mucus no longer coming up with every hack of my warn lungs, they released me today to continue my IV's at home. My shortest stay ever... one where I did not have the constant worry of my weight, where I did not struggle to heal. I know not every visit will be like this, but a bright spot is something to illuminate so many other times.

Tonight, when I got home, I immediatly looked to connect with my husband, roomies, and kitties. I was told that my Hazard had not been seen since Friday morning, not unheard of him to be gone so long, but not normal either. I called him a few times, then decided to wait until night when he normally comes home. On our way out to dinner, only a quarter mile from the house, I saw a sickening site. The body of a pure black cat was laying on the side of the road. My heart rate quickened, but I did not feel an instant pit in my stomach... hope despite the evidence. Matt and I pulled over to take a closer look. The cat was in bad condition, you could tell they were gone instantly. I looked for Hazard's distinctive qualities... and found some on this cat. Long black hair and no color patches... but I also did not see his long hair sticking out between the pads of the paws and the ears did not seem to be the same as my baby's. Matt and I could not definitively tell if it was Hazard, but I let the cat know whomever he was he was a good kitty. I was sad, but okay if it was my Hazard. I knew that my boy could still be alive, but wouldn't believe it until I saw him. After dinner we came home, and I called him again... no answer. Thirty minutes later, Tyrone opened the door to talk to his cat, and my big black fuzzy boy came bounding into the house. He meowed when he saw me and immediately nuzzled his mom, who'd he missed for the last few days. I hugged him tight, and he couldn't understand why we were all fussing over him, but tonight I am so happy to have my boy back.

So tonight... my prayers are full of thanks... and I thank all of you for the ones you have sent my ways!

Tune Up Time

2008-09-10T15:55:00.000-07:00

Hey all!

So I'm writing this from the lovely confines of OHSU hospital... as is normal with CF, it was time for me to get a "tune-up". Some CFers rarely need them, while others need IV clean up several times a year. My body seems to need it about every year, and it's that time of year for me. I started feeling worse about a month ago and was put on oral antibiotics. They helped, but I declined rapidly after our return from Seattle (another forthcoming post). At my clinic appointment on Tuesday, I knew it was probably time, packed my bags, and my doctor and I decided it was time. Amazingly enough, despite how bad I feel and how bad my cough sounds compared to my normal, my lung function tests were not down. Usually an infection of this magnitude would make them terrible, and I would have a hard time gaining back what I lost. This time, by catching it before I decrease, I hope that I may even have improved function after. On another positive note, I have also gained a small amount of weight... unsual when I have been dealing with a persistant infection...

So even though I find myself in the hospital, I find myself incredibly blessed!

Update a Long Time Coming

2008-08-25T12:53:00.000-07:00

I know I haven't posted forever. Honnestly, I don't have a good reason at all. I haven't been in a depressive hole that keeps me from updating. I've been busy, but not every single day. Life has just settled into a comfortable pattern, and for some reason writing just seems nearly impossible.

I had a good birthday... that was over a month ago. I had a good visit with the diabetes doctor where I found out that the pill that I've been on is working, so I won't have to go on insulin :D My sinuses threw me more issues, I had to go on prednisone, but I think that already they are starting to go downhill again. I also came down with a pretty intense chest cold that I got antibiotics for. They knocked down the infection, but I really don't feel like I bounced back all the way. My body feels a bit weaker... I think that I'll probably need a hospital stay after we get back from Seattle... Yup, we're headed up to Seattle on Wednesday and getting home on Sunday. I promise to try my hardest to post stellar pictures. I also became an aunt again in the time that I haven't been posting. Matt's sister had a beautiful baby boy, who I cannot wait to meet in December when we go out to South Carolina for Christmas.

I know I've been missed :) I also need to share pictues of my BEAUTIFUL new bedroom set. My garden has also started to produce a lot of good food... mmmm food. Today is a lazy day on the couch... reserving my energy to have as much as possible for Seattle.

Love to all my friends...

Talana

Quick Update

2008-07-14T14:21:00.000-07:00

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!

2008-07-12T14:01:00.000-07:00

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

2008-07-11T15:00:00.000-07:00

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

2008-07-10T15:00:00.000-07:00

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?

2008-07-09T15:00:00.000-07:00

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

2008-07-08T15:00:00.000-07:00

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

2008-07-07T15:00:00.000-07:00

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

2008-07-06T15:00:00.000-07:00

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

2008-07-05T13:47:00.000-07:00

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!

2008-07-04T15:00:00.000-07:00

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

2008-07-03T15:00:00.000-07:00

(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!

2008-07-03T12:50:00.000-07:00

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

2008-07-02T14:34:00.000-07:00

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

2008-06-20T16:19:00.001-07:00

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

2008-06-16T22:30:00.001-07:00

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

2008-06-14T13:14:00.000-07:00

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...

2008-06-14T00:28:00.000-07:00

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

2008-06-06T22:01:00.000-07:00

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

2008-05-21T00:35:00.000-07:00

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

2008-05-18T15:51:00.000-07:00

(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

2008-05-15T16:21:00.000-07:00

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!

2008-05-11T00:19:00.000-07:00

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...

2008-04-24T13:31:00.000-07:00

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

2008-04-21T19:04:00.000-07:00

* 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

2008-04-19T03:30:00.000-07:00

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

2008-04-15T17:25:00.000-07:00

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

2008-04-13T02:06:00.000-07:00

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

2008-04-08T21:52:00.000-07:00

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

2008-04-05T13:27:00.001-07:00

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

2008-04-03T22:57:00.000-07:00

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

2008-04-03T04:52:00.000-07:00

(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

2008-04-03T02:24:00.000-07:00

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

2008-04-02T15:13:00.001-07:00

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

2008-04-01T15:47:00.001-07:00

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!

Walking Around in Ordinary Clothes

2008-03-31T13:19:00.000-07:00

I've always wondered if Jesus walks around in ordinary clothes, seeing how we treat people. It's a common wonder as a Christian. I've always wondered more after the experience I'm about to share.

My senior year of high school, I worked at the local McDonald's. Cottage Grove is a small town, but I-5 runs right through the town and is a convenient stop for travelers, and the first with several amenities in either direction, especially for travelers headed North. Thus, the only jobs for teenagers in Cottage Grove seems to be fast food. I didn't mind terribly working at McDonald's, even though we were insanely busy most nights. Being a freeway stop, we saw a number of travelers. Those from sports teams, greyhound bus passengers, truckers, and vagrants.

The night was one of those insanely busy nights. I was working the front counter and we had all four registers going, filling orders and moving at a very fast pace. The lobby was full and no matter how many people we served, there always seemed to be a crowd waiting. I noticed a man standing off to the side of the crowd. He swayed back and forth as he stood, wringing his hands, disconnected from the world around him. His clothes were not clean, his hair tangled, his face deeply tanned. I watched him while I filled a few orders, trying to figure our what he needed. The next chance I got, I motioned for him to come over to my register.

He approached with his head down, shuffling his feet as he walked. He mumbled as he ordered, with few comprehensible words. I worked with him trying to figure out what he wanted. Being a natural teacher, I always have had the tools to figure out how to know what people need, to help them express what they want. After a few minutes of working with him, I figured out what he wanted, a cheeseburger and french fries. He painstakingly counted out his money, mumblings as he did so. As I filled his order, I noticed him furiously scribbling on a piece of paper. I handed him his order. He lifted his head, and seem transformed... his clothes seemed less disheveled, his hair less tangled. He said to me, clearly, with confidence, "Thank you so much, God bless, this is for you". I looked at the piece of paper, and a few bible verses were on it as well as his name. The writing was clear and perfect, just as his last words to me. It was as if my kindness and patience transformed him. I had to take a moment to myself, as all of it seemed so surreal. I asked my coworkers if they had seen what had happened, and none of them had seen the man. As I had worked with him for several minutes, and he stood there, writing, which was unusual, I would have expected someone to notice, but no one did. It was if it was an experience just for me.
I still to this day wonder about that experience.

Praying

2008-03-30T21:30:00.000-07:00

I'm sending prayers, positive thoughts, and good vibes to Tricia tonight. If you have not read their story. Go ahead and do so... then join me in praying that her transplant is a go, for a safe journey through, and for the donor family who lost someone today but gave the gift of life.

I've been through this wait a number of times with other CFers, but it doesn't get any less filled with nervous, anxious, excitement. It never lacks in pain for the donor family that lost someone, but gratefulness at giving new life to someone who needs it so badly. If the surgery is a go, it comes on the birthday of my dear friend Eva who breathes every day with new lungs... fresh and full of life. It always seems that transplants come on the birthday, transplant day, or death day of someone related to the CF community.

update It was a "dry run", the term assigned to when you get the call and the lungs are determined not right. It can be for a number of reasons, but it is fairly common. But it doesn't make it suck any less. A chance for new life put on hold and still a life lost.

Swimming

2008-03-29T00:40:00.001-07:00

So I know I have not posted in a bit... as Matt keeps reminding me! I don't know, just haven't had much new to say!

Today however, I took an important step in trying to maintain what lung function that I have. I went down to our community recreation center down the road and bought a 3 month pass to the pool/fitness center. Then I went "swimming" today. Okay, I really don't lap swim, but I did move around in the water, made my lungs and muscles work, and got a very productive cough. I'm going to try to go often, as I like moving in water, it's great for improving lung function, and I paid for it so I should use it!

CFRD Appointment

2008-03-20T20:45:00.000-07:00

So I had my appointment on Wednesday and it went fairly well. No radical changes to my diet other than continuing to watch my sugar intake... trying to balance what I eat. I monitor about 3 times or so a day, and I send in the results in 2 weeks, then see where we go from there. Mostly a waiting and watching game.

In other news, I'm already halfway to my goal on my CF walk!