Christmas at home!

 I am SOOO HAPPY TO BE HOME! I've  been non-stop getting ready for Christmas, and I couldn't be more excited to be home with my family to experience it. I will update with lots of pictures from all my excursions this Holiday Season. I am so excited for all of you to see my family! Update coming soon.

Here is my Fill in the blank Friday. I missed last Friday because I was sick, but here it is now! And it's holiday themed.

1. Giving is one of the best things you can do. I love to give to my family and friends! My mom and I are crazy about holidays and birthdays. We go all out!

2. Receiving is always nice. It's wonderful when someone thinks of you and buys you a present. Even if it's a small, it's nice to be thought of. :)

3. The best gift I ever received was ....I know this might sound a little cliche, but as much as I love material things, the best gift I ever received is/was my family. I'm so thankful to have my family, I don't know what I'd do without them.

4. The best gift I ever gave was my love? I'm not really sure. I guess I'd have to survey all the people I've given gifts too. Although I'm sure the blue snuggie I bought my friend might take this one.

5. Something intangible that I wish I could receive is Adventure, and a long life full of deep breaths.

6. Something intangible that I wish I could give is awareness, strength, and compassion.

7. The one gift I always wanted as a child, but never got was One of those little cars you could drive around. ALWAYS wanted one, never got one, so I'm going to get my (future, hypothetical) kid one when they are old enough. 

First Thankful Thursday/big news!

Good news from the 206 (aka Seattle/UW)

As you all know, if you've read my previous blog entry about my procedure, I still have one more thing to do before I can be listed. AND, if you read that entry, than you also know that it's to get my clot handled and get my SVC stent-ed.
The cardiologist concocted a plan to fix everything. That plan along with cat scan with contrast images, and the footage from the procedure was shipped up to Seattle for review. Today the counsel meeting was held, and her plan was APPROVED! That's right, the mystery is gone, the procedure is pending, and I am soooo elated!!
Here's the plan:
Take my port out, remove clot, stent SVC, put new port in, seal me up, and send  me to recovery. It's so amazingly simple, and I know for sure that it is going to work out. :D
Now, I have a theory and I'm pretty sure I have never shared it in my blog, not even the CCA blogs I wrote. I have had a lot of shitty set backs in my life, I pretty much went from one intense bacteria to another my entire childhood, so unlike a lot of people I've always been sick. I've just never been this sick. With every set back came a new self awareness, and a new experience. It's hard for me to be bitter about it all because I feel everything that happened, happened the right way to bring me to the present. What's meant to be will be, but I think that it's determined by the person, it's what they ultimately want their life to be. We have been given the wonderful gift of being able to learn. We can learn from every experience in our lives and apply it to our future. The way that's most apparent for me is I am NOW physically ready for a lung transplant, as well as mentally and spiritually. 10 years ago when my doctors tried to talk me into it I had absolutely no interest. Not only that but knowing what I know about transplant, I can say that I would have not been able to handle it well. I would have been scared, and you don't want to do something like that being fearful. It's happening now because I'm ready for it, because when it was brought up to me again in February my life took a new direction. It changed from being mysterious and uncertain, to being hopeful and prosperous. I've always had certainty that my future would be a healthy one, and although life after transplant isn't exactly picture perfect health, I'll be able to live more than I have my entire life of being sick.
The crappy things that happened in my life have made me grateful for what I have, and what I get. They gave me the ability to see something for what it is and respect it/accept it, but know if it is or isn't right for me. I can also VERY clearly see where my life is going, I'm not hopeful anymore, I'm anxious. I just want to get to the finish line so I can take a break! Most of all though, I am self aware, I AM me. That being said, I'm completely positive that the whole transplant itself will take me to places I've never been before. All I can say is...I CANNOT WAIT!!!!

After I found out about the new development I had the realization that this transplant is happening for me. It's REALLY gonna happen, the bright shiny future I picture in my head....it's gonna be real. Nearing the end of that thought process I just started to cry, alone in my hospital room, sitting on my bed, just bawling my eyes out.
This is a picture of me on top of the Space needle on my last visit to UW. I'm looking happy and excited, because I was totally jazzed about my last visit to Seattle before being listed.

So this Thursday....I'm thankful for the amazing team up in Seattle, the amazing team down here, my amazing care team (all of you, not just mom and Morgan), for my strength which is always surprising me, and ultimately I'm thankful for the gift to be able to live another day every day.
This life is just too amazing to miss out on. I can't wait to see what's next.

To life, to love, to experiences (good and bad), and to the never dying spirit in us all.

Love, love, and more love
Phee

Cupcake Craving!

Still in the hospital. In the last 5 days (since I've been here) there have been 4 babies moved in and out of the room next door to mine. Usually I find babies to be quite cute and cuddly, but for the last 5 days I have heard nothing but screaming and crying. One could easily say that this directly contributes to my lack of sleep. On the subject of sleep.....
I had the BEST set of staff today. My nurse let me sleep all morning and into the afternoon, respiratory let me sleep, and my doctors who usually wake me up let me sleep. I could not be happier! I got to sleep in till 2 pm. Just as a reference point I haven't been able to fall asleep until around 4 am EVERY night. I am so exhausted as it is, but no sleep was driving me nuts. Here I am again, late at night with babies crying from every corner of the unit. I sound like a baby hater, but I assure you I am not. I'm just resentful because I'm exhausted.
Anyways.....

Tonight I am craving cupcakes. Not just any cupcakes either, I'm craving the delicious works of Le Cookie Monkey that they provided for us at our wedding. AND I'm so craving them that I went back to our wedding photos to look at them. Thought you should have the opportunity as well!

 

I would LOOOVE to be back in time on my wedding day. I would spend more time eating that delicious cake. I only got one cupcake, and that single bite of red velvet from our cake cutting. Unbelievable! They were a huge hit though, my family really enjoyed them. :) Really that's all that matters on your wedding day; Your guests enjoying the day with you! 

To all of my blog readers!

Here is our Christmas card! Unveiling and spreading the love. This is for all of you who read my blog too. I don't know how many of you there are, but hopefully you find this and enjoy it. :)

It's another late night in the hospital. I'm plagued with insomnia....

About to turn on Holiday Inn (one of my fave Christmas movies)
Here's to hoping I fall asleep and don't get woken up by a million people. This morning I woke up to a resident pressing on my belly after a full night of feeds. Ouch!

Good night blogger world!

Hospital Update

Another couple days in the hospital...
Fevers have come and gone.
My pleuritic pain has significantly diminished. When I came in pain meds would barely touch it, now I barely have to take pain meds. YES!
I did lose my voice which seems to be the only lasting grossness of my sickness. 
I'm already feeling better and, I'm getting tons of icky junk up and out of my lungs.
Other than my lack of sleep I'm feeling pretty good.

Hopefully out on Thursday!

I just finished making our Christmas cards that I'll be emailing to people, because I'm in the hospital and can't mail them out. They are so fun! This is the second year Morgan and I have done Christmas cards, but this year we have our dogs. :) I just got Mo a new puppy. His name is Panda! He's the sweetest. We are so in love with him. Of course Fancy will always be number one, she's my little princess.

Anyways, I'm having some Christmas stress because I'm stuck in here. I haven't been able to buy anyone a Christmas present and, if I don't get out before next weekend I'm hoping everyone will like their Christmas cards. Haha!

I'm going to attempt sleeping in this noisy place that isn't my home.

Sweet Dreams!

The last several weeks I have been extremely busy, or extremely sick. Unfortunately both of those circumstances caught up with me and I am once again in the hospital. I got in right before a cold started brewing...(Thank jeez!) Luckily, because I was just in a month ago I will only be here a short time. I'm thinking 7-10 days. :) Right in time for Christmas! I'm all settled into my room and, am currently being kept awake by one very unhappy wailing baby. Thought I'd try something new; here's my first "fill in the blank friday"

1. I am hoping my Christmas this year includes, lots of yummy warm drinks and, tasty treats. A fantastic amount of time snuggling with my husband and, quality with my family. I also wouldn't mind getting a pair of Solo Beats and, a memory foam mattress topper.;)

2. My biggest guilty pleasure is Teenage dramas and nerdy video games. My husband hates both....hehe! His guilty pleasures include goofy shows like Jim Hensons The Storyteller

 

3. I am most proud of my decision to get a lung transplant and everything I've done to get listed. This has been a great year for me, all my greatest accomplishments happened this year. The second thing I'm most proud of is marrying my husband. I am EXTREMELY lucky to have him in my life.

4. If I could choose one outfit to live in it would be My black sweatpants, the softest fitted tee over a cami, with my Muck Duck sweatshirt and, some toasty fleece socks with my slipper boots from Urban.

 

5. People are always surprising me in good and bad ways. In my life I have met a lot of wonderful people and I am thankful for every single one of them. They bring so much light to my life. I'm even thankful for the people who aren't so wonderful, they taught me the valuable lesson that not everyone can be trusted, and not very many people love with an open heart and open mind.

6. I would rather be sleeping next to my husband than by myself in my hospital room.

7. I love my mom and husband more than anyone/anything else in this world.

There you have it...I'm definitely ready for bed now and, the baby has stopped crying. 

Buonanotte! 

Love, love and, even more love

Phee

The best laid plans of mice and men

I've been home from the hospital for about a week and a half now. If you've been waiting for an update on the wonderful surgery I had to endure before I went home, than you will LOVE this post.
It was determined by an MRI with contrast that I had a clot in my superior vena cava. My port catheter seemed to go straight through the clot, and that's why my port still worked in spite of the clot. Seattle decided based on the MRI that they wanted to have a stent placed in my SVC before I was listed. I would do ANYTHING for transplant, and I really do believe the transplant evaluation weeds out the lesser determined people. Because god only knows why someone who doesn't really want a transplant would endure all of that. So there I was, a girl willing to do anything, who had to do EVERYTHING and a lot more.
The plan was to go through the femoral artery in my groin, move the catheter temporarily and get the clot out. Wham bam it's done. Unfortunately for the team, my poor family and friends, and most of all me...I am a freak of nature, and the clot decided to be complicated.
Here's what really happened.
The clot was wrapped around the catheter and had adhered to the walls of my SVC. They were unable to place the stent without locking in the port which is far too old to be left in there, the call to not do anything was made. In the midst of all of this, a little piece of the port catheter that was sticking out of the clot broke off and decided to go for a crazy ride. The doc went in after it and managed to get most of it, however a little piece lodged itself in my upper right lung. The whole procedure took 7 hours, and went until 12 am. They went in once in my right femoral, twice in my left femoral, and once in my neck. I'm sure my retelling is not that great, and there might be some blank spots but I was out of it and couldn't make sense of it all in my drugged haze. The conclusion is that the clot didn't get removed, my port didn't get replaced, no stent was placed and I'm going to have to go through an even more invasive surgery to fix all this.
A day prior to the procedure my nose started bleeding every time I coughed really hard. The reason is still a little unknown, but it was thought to be the oxygen that over time eroded one of the superficial vessels in my nose, and the pressure from my cough would make whatever clot had formed burst. My nose would clot and then I would cough and it'd bleed again. It was a gross mess!! It continued for several days after my procedure too. In addition to the nose bleed, I had a fever for several days but had no infection, I couldn't hold any food down, and I was in a lot of pain. There were 2 small hematomas that formed; One in my neck, and the other in my left groin. For about a week I was taking pain meds pretty consistently.
All of it was way more disgusting and disturbing than I can even put into words, and I'm disappointed the stent wasn't placed.
BUT I'm grateful to my cardiologist who knew better than to do it anyways, to my doctors for allowing me pain meds, and to the wonderful set of nurses I handpicked for post procedure.
Out of all this I learned a couple things... The first is that even on the surgery table you can make jokes about funny socks, and David Cassidy. The second is that I have the BEST care team in the world. My mom and my husband are so amazing, and they work so great together as a team. I knew my husband would be there for me and care for me, but I had no idea to what lengths he would actually go. Now I know there's nothing he wouldn't do to help me, or care for me. (which is EXACTLY what you want in a husband!) As for my mom.....Well, I couldn't dream up a better mother. She is so many things to me! My survival is so intricately entwined with hers, and I can't imagine any part of my life without her in it.

So the procedure did NOT go as planned, but a new plan is in the works and we'll know soon what is to be done about it. I do know this though, I'm in GREAT hands! I just have to keep the faith in all members of my care team, keep a lid on my misemotions, and not panic. I will get on the list, I will get my clot fixed, and I will be okay. I know all of that, I just have to keep knowing it in spite of whatever I have to go through to get to the end. :) But THAT is what I do, it's what I must do. Suck it up, be brave, and KNOW that everything will all work out the way it's supposed to in the end.

My Husband

Today is my husbands 21st birthday so I'd like to take this opportunity to talk about how much I adore him.
First of all, he's one of the most caring and loving people I know. Our parents introduced us, and when I first met him I thought he was the cutest boy I'd ever seen. I was a little mislead by our first interaction with each other. He came off as this "I don't give a damn, I'm super cool and I know it" kind of guy, and I wasn't sure if I wanted to deal with that. I can only imagine what Morgan thought of me....."She's a weird girl who says weird things, has a weird laugh that's always accompanied by a coughing fit" That's how I felt anyways. I hear from him now how weird he thinks I am, but we're married so I'm not going to worry too much about putting on an act. :)
We hung out a few times over winter break from school. I was sick and spent the whole time hacking, snotting, sneezing, and running to the bathroom every few minutes to cough up mucus. I wouldn't by any means call this endearing, but he sat and watched movies with me, asked me if I was okay, brought me water, and eventually cuddled with me. I started to know him as a shy boy who had a huge heart, and so much love to give. Eventually I couldn't see my life without him in it. Now I know him as the love of my life, my best friend, and my husband.
We have now been together for roughly 5 years. I couldn't be happier spending my life with anyone else. He is an amazing man with a very loving heart, and a sense of humor to boot. What more could a weird girl with CF ask for?
By the way.....He's still the cutest boy I've ever met.

 

 My rock star husband.

He's kind of a big deal.

HAPPY BIRTHDAY TO MY ONE AND ONLY LOVE.

Hello Doernbecher!

I'm in the hospital again. Standard thing: IV antibiotics, Chest Therapy, and some much needed RandR/TLC.
One would think that checking into the hospital would be a bleak experience, but I find that the kind of sick I get requires being admitted. The relief I get when I make my hospital bed and plug into some oxygen is so extreme. It's a safe place, where I know I can get better and the accommodations aren't too bad either.
One of the other bonuses is how long I have known most of the nurses here on 9N (8-15 years). These people are like my second family, it's my home away from home, and the bonds I have with some of the staff are amazing. There's no doubt that this is a loving place with people who love me, who I love back just as much. After only a week I am feeling much better, so much better. I am so thankful to the Cystic Fibrosis team here, and all the nurses who take care of me. Who knows where I'd be without such an awesome team looking out for me.
I have lung function tests on Monday to just see where I'm at. Unfortunately I won't be going home anytime soon because I have a surgery coming up. I'm getting my portacath replaced, and having a stent in my superior vena cava. I really wish that I wasn't too lazy to type out what those were. The links will take you to their wiki pages. :) Anyways, the surgery will be at the end of next week most likely. I am a little nervous, but I know that it will all be okay.
It's a pretty uneventful stay other than the surgery, which I am so grateful for. Here's a picture of me in my hospital bed.....Super foxy like of course.

To travel...?

The beginning of fall brings back many lovely memories from my childhood. One of my favorite though is the beginning of a new school year. I miss school shopping, and getting all my things together the night before, riding the bus, seeing my old friends and making new ones, but most of all LEARNING! I've always been a little geeky about my education. I love learning new things! Ever since second grade when I learned about Australia I've been completely enamored with history. It quickly grew to be my favorite subject, and I definitely flourished in it.
I've always wanted to travel and have adventures, but in my life I was never really able to do so without getting sick. However, I found out on my last trip to Seattle that Post-Transplant I will be able to travel. I immediately started listing the many places I wanted to go, but when I got back to the place I was staying the first place I looked up was Australia. I felt like a little 8 year old, once again learning about the world and planning the many trips I would someday take. This time it's different though, because now I know I will be able to go places, I know that my love for history and travel will grow fonder instead of resentful. I am simply in awe at this new opportunity.
The leaves are turning and the weather is changing, all of it reminds me that fall is just a worldly reflection of the change in my own life. I'm a completely different person now than I was last year at this time. It's a wonderful change, and I couldn't be happier, or more excited about my life. Of course my health will get worse before it gets better (post-transplant), but in the meantime I'm looking forward to this sight.....Ayers Rock. My first love in history.

The end and the beginning

This summer has been a long journey. It's been a crazy, fast, whirlwind of change. In March I decided there were 2 things I wanted to do this summer.
The first was to get married to the love of my life, and to have a wedding with all my family there.
I DID THAT! We had a beautiful wedding. 95% of my family came, my friends came, and we had the time of our lives. It was the most incredible fun I've ever had. I wasn't nervous, or stressed at all. I am simply fantastically in love with my husband, Morgan May. I am so blessed to have him in my life.

The second was to finish all my pre-transplant testing and get listed.
I DID THAT TOO!
The testing was hard, and it was an intense and insane list of things I had to do before I could get listed. But I'm on the other side of it now, and I see the beauty that comes out of the whole experience. Bob was not lying when he said this would be an adventure. This will be the biggest trial in my life time, but it will also be the one that gives me the most in return. It's a life changing surgery. And it's BEAUTIFUL!
It's like being lost at sea for as long as you can remember and seeing land for the first time. The possibilities and adventures are so palpably vast and incredible. A new life in the same life. A breath of fresh air.
I am listed as of August 11th.

My summer plans have come to fruition! I am in the hospital for a couple weeks to get back up to normal, and then I have a couple more to relax and enjoy the end of summer. It's been the best summer of my life. I cannot thank my family enough for always being there for me, and for staying behind me even when my plans are outrageous! Especially my mom though, who sticks by me no matter what.

All I can say now is that I have never been more ready to drop anchor, and take my first steps onto dry land.

To new lungs, love, and adventures!

L,
Phoebe May

Up to date

I've been a negligent blogger. I'm here now, and I'm ready to get back in the saddle of posting.

 Something you may not know (because I haven't been keeping my blog up to date) is that my boyfriend and I are getting married this August.....Only a month away! It was a very sudden decision, and I wanted to have the ceremony before I was listed. Luckily both of our families have been extremely supportive of our upcoming nuptials. We are so blessed with such wonderful family and friends!

I've also been super busy with all of the transplant stuff. We've been planning our 4 day UW visit for a little over a month now. Guess what? WE ARE IN SEATTLE! Me, my mom, and my auntie all drove up today. We are staying in a very interesting place. I have to say that it's kind of homey. That might just be because I'm used to hospital type stuff. This is like a perfect mix of home, hotel, and hospital. HHH! We managed to pack the car entirely of everything we'd need for our 4 day trip. When we put our bodies into the car it was FULLY loaded! No more room than what was in front of us. It was a very fun ride, but then I've always loved road trips with my family.
Our first appointment is at 8 am. Holy no sleep man. I'm going to be walking dead tomorrow, the only thing that will keep me on my toes is the freezing cold clinic rooms. Ahhhh! And possibly the weird "take a number" blood draw area. No joke....they actually have you take a number, and then they call it when they are ready for you. There's even one of those LED screens that say what number they're on. So strange. It's like one giant body processing center.
I know that at some point, either Monday or Tuesday, I have a PH monitor placement. I'm so nervous I could scream. I've never had anything up my nose and into my throat. It's freaking me out....! I'll get through it, I always do. Sometimes the thought is worse than the actuality of it. Like my nose piercing, I was so scared, but it didn't turn out to be that bad. Crossing my fingers.

In my transplant travels I find myself appreciating the world around me. This experience is different on so many levels. I'm looking at the world with new eyes, and feeling things in a new part of my heart that grew to accommodate them. This world is so full of love, and the more I dive into this life and community of CF/TX I realize just how much love there really is.

I should admit that this whole thing is still a bit surreal, but I can see through to the other side some times. This big world full of love and life is just waiting for me, and so are an unsuspecting pair of lungs.

Love and life,
Phee

Transplant Update

OKay everyone...I'm sorry I have been neglecting my blog. I vowed to start blogging after my CCA stint was over, and here I am not blogging for weeks. I guess I need a break, but also I've just been so busy. I have so many updates for you it's ridiculous.

I'm in the hospital right now to get my normal clean out, although my admission was rushed on account of a cold I caught. I've been here about a week and a half now. I've got at least another week and a half to go.

As you know I decided to go ahead with the transplant. The process has been long, and arduous so far. I became eligible for Medicare in February, so my other insurance was cancelled automatically. My mom and I must have spent weeks trying to get all of our bases covered insurance wise. We finally got it all done, and were able to move onto the referral process. Yay! We talked to the coordinator up at UW, and decided on having the first meet and greet appointment in the next 4 weeks. It was a good decision because I would be fresh out of the hospital and feeling as good as I could. However, a few days later we get a call from the scheduler who says if I don't come on May 3rd (this coming monday) for the appointment, than I won't get in till June. The sad thing is, I know I couldn't wait till June. I want to be listed by October.
So I'm in the hospital, and oddly enough my doctors feel very strongly that I go to this appointment. Later today I'm being discharged, going home to stay the night, and then leaving for Seattle on Sunday. My mom and I are going to stay in a hotel, and head to UW at 7:30 Monday morning. After that we are going to come home, only so I can get re-admitted. YES....RE ADMITTED on Tuesday! How weird. I basically am getting a long weekend away from my hospital stay!? The only thing that is annoying to me is that I have to pack all my stuff and bring it home, only to bring it back and unpack in a new room on Tuesday.
Whatever. It's all for the cause!!!

I'm wiped, and I have to pack in the morning...well later in the morning. I'm sure you are familiar with the CF insomnia....

Rose Garden

Today I went on a little expedition to the Rose Garden here in Portland. I am sad to say that none of the roses were in bloom yet. BUT the grounds were gorgeous, and the one spot that caught my eye was the Shakespeare garden. It's really just a tribute I suppose. Here is a little picture of it. The quote is what the engraved stone on the wall says. 

It's on a hill, and to get down to the garden you have to go down stairs.....I haven't really done anything active in a while, so I had no idea how hard it really is to have such low lung capacity. I felt like I was going to pass out. I was willing my legs to move half way up the hill. Blagh! It's sick. It makes me feel sick. On the bright side, I got a good workout. :)

Update on the transplant:

All of the insurance stuff is handled! YAY! It's incredibly weird navigating through the world of social security, and medicare. I am so happy about my insurance though, and am deeply in debt to the man who gave us the lowdown on what we needed. He is a miracle. 

So we called our contact at the Cf clinic to tell them we got the insurance stuff handled. Now we are on to the referral part of the game. We will be referred to UW in Seattle, and hopefully go up in the next month to meet the team. I hope it goes that fast anyways. Going up those stairs today made me wonder how long it's going to be before I have to be on oxygen all the time. And that thought made me want to throw myself down the hill. It's amazing how far you can fall in a year. 

I'm off.

L,

Phee

Cca #10: Final-e

Writing these blogs for the past 3 months has been a very great experience for me. I put into words my own personal philosophies to share with you. I hope that you enjoyed them, and maybe took something from them. I realize that maybe I didn't share a lot about myself other than my ideals, so for my last blog that's what I'm going to do.

I'm an only child of a single parent. My dad passed away when I was a baby, and though I don't remember him I hear we had quite the relationship. My mom is my best and most trusted friend in the world.  We have been through everything together, so we are not only best friends - we're war comrades. I can't imagine anyone better to be in the trenches with. She has 7 siblings, and 20 something nieces and nephews. My family is big, and has always been so loving and supportive of me and my mom. I am forever grateful to them for always being a call away. My life has been filled with love, and that's because of my amazing family.

Being diagnosed with CF at 6 weeks old prevented me from knowing any other kind of life. I tried to be a normal kid, and at one point I was so angry because it seemed impossible. In my teenage years I still strived to be normal, but it's now when I'm at the beginning of adulthood that I realize I'm just not cut out for normal. It's not because of my disease, although that's probably the catalyst, normal is just not who I am. I am an artist, a free thinker, an "old soul", a lover of originality and creativity, a someone who refuses to live a dull existence. I've always thought that the best way to live life, is to live it creatively. I'd like to tell you that I'm a very proud owner of the life I'm living. So I must be doing something right.

Everything I have shared with you has taken me a life time to learn, and even now I'm figuring new things out everyday. But the last piece of advice I have to give, the thing I have learned has the most value, is this; LIVE! Go out in the world and live the life you have. Love the life you have. Be the owner of your life. Because it's the most valuable thing you could ever own.

Thank you for reading.

Love,

Phoebe

Cca #9: Faith?

My time as guest blogger is almost up and there are a couple things more I want to tell you about. One of those things I haven’t really gone over is faith.  A belief in God generally helps people get through the rough patches. 

At times I have been asked how I deal with having an incurable illness, chronic health issues, etc.  I have been asked about my religion, whether or not my belief in God is what gets me through.  I don’t want to dwell on religion or God in this blog.  I just wanted to offer my version of “faith”. 

Being of a certain faith helps people in tremendous ways; it gives them hope where there might not be any, it keeps them positive, it aids them in living healthier lives, and also helps them live more fulfilling lives. These are things that I have observed for myself.

However, I never was part of any faith while I was growing up. Although that’s not uncommon by any means, I have found that a lot of people with CF, or any other chronic illness, are brought up as a member of a religion. It’s logical that having a belief system and faith in a higher power would help someone who is ill. It’s also safe to say that the people who experience illness through a loved one would also need that support. I know that the subject of religious beliefs can evoke strong discussions and emotions; what is true for some isn’t true for others, and what helps some might not help everyone. But I know there are people out there like me who don’t belong to a church, but who seek spiritual enlightenment and wellness. I know there are people like me who have made great strides in dealing with chronic illness without having a religious affiliation.  

My mom always taught me to look further into the world so I could really experience all that life had to offer. She taught me to believe in myself, and to make decisions in life based on what I thought was right or wrong, to understand about consequences of decisions I made (both good and bad), and to live in such a way that I would have no regrets. She allowed me to be an individual, and gave me freedom to form my own beliefs and make my own choices. Though I started as a baby with no beliefs, I eventually sprouted some, and here I am today 20 years old, my mind chock full of beliefs, some of which I have already shared with you in my previous blogs.

I don’t bother with questions like “why me?”, because it gets you nowhere. That is a dark abyss from which you may not escape, so don’t go there.  It doesn’t matter why. We are living in the present, and trying to live for the future. Everyone is eventually going to kick it.  Life is terminal.  So just live it and live it well!

I believe that I can steer my own course and create what I want out of life.  I believe that my sheer intention to live is the senior reason I am alive to blog about it.  I love my life.  I told my mom once that I didn’t want to hear doctors tell me how long I had left and that I would stick around as long as I was interested in being here.   I really don’t know if God has a plan for me or what it would be.  But, I know that I have a plan for myself and so far it’s worked out pretty well.

Love,

Phoebe

Clinic Appt.

Tomorrow I have a clinic appointment. It's the normal 2 weeks after you get out of the hospital kind of appointment. We'll probably talk about transplant stuff, insurance stuff, and how much my lung functions suck. Although the word "suck" most likely won't be used by anyone but me. :(
It's all part of the CF game though. On the brightside, this transplant business should be sorted out soon, and then I can go up to UW and meet the team. :) That is going to be amazing! I am so excited about it.

Until tomorrow few blog readers.

L,

Phee

Cca #8: Small things

I think that in life, especially life with a chronic illness, the future is unsure and unpredictable. We hold on to the big moments because they stand out, but it’s not until we’ve been on the mental border of life and death that we start to appreciate life as it is.

Making the decision to get a lung transplant has made me admit a couple of things:

1)  That being that end stage cystic fibrosis is a reality; it’s not just some far off thing that could happen but isn’t happening.  It isn’t the type of thing you can really know until you are kind of close to it.

2)  I’m not invincible.  Even though the odds are mostly in my favor, there could be a premature ending to my story.

Lesson learned!

 I’m living for the present and the future.  I’m appreciating the life I have now, because in a few years I will most likely be living a completely different one.  And I’m learning the importance and significance of the little things in life I tended to overlook before.

I have become a connoisseur of these small things; these moments. I have found they add to your happiness without defining it.  Like having fits of laughter with my family, chasing my nephew around the house, snuggling up to a movie with my boyfriend, or just driving around on a nice day.

Call me a sap, but making the decision to get a lung transplant has left me with the feeling that life, and EVERYTHING in it, is short lived and should be cherished.  When I say short lived I just mean that time is fleeting, and things are always changing.  I have found myself going through these moments in slow motion, and locking them up. I am truly experiencing them; sucking every ounce of them up so I can retain the joy they bring me and use it later.

I think it’s important for us to remember the way life was, and is.  Maybe I sound like a broken record, but remembering everything you’ve done so far (all the fun, all the struggles, the adventures, time spent with family and friends, time being sick, and time being well) gives you the motivation and the strength to make it to the future. Remembering simple times, and simple pleasures, and possibly even the boredom that sometimes accompanies them, makes the daily minutia of life a little more bearable. It reminds us that even when we’re not experiencing light or dark times, there is still life in us.

Living with a chronic illness is a series of highs, lows and coasting, but there are small things in every day, and in every breath that could be cherished and held dear, and that’s what I’m doing. 

How about you?

Love,

Phee

HI!

Hello Everyone,

I have been meaning to start a blog of my own for some time now. Right when I was working on it I was offered to guest blog for the CCA (childrens cancer association) teen blog. It was a 3 month slot of weekly blogs, and I'm almost done with it. :) It has been really fun blogging for them, and I'm so excited about this blog as well.
I can't wait to share things that are more personal, and less general. SO, I'm starting off with some of the blogs I did for CCA and then adding new ones.

Hope that you enjoy reading my blog. I would love any feedback you have to give.

L,

Phee

Cca #7: Patient Manual

Something you don't know is that I was just in the hospital for almost 3 weeks to treat my CF. There are things that I learn from every hospital stay, and sometimes I just learn the same lesson again and again. So I thought I'd share a bit of that with you this week.

This is my formula for being a good patient without being just another body for doctors to put meds into.

1. Be gracious. These people are here to take care of you and help you get better.
2. Ask questions! If you don't understand something in the slightest you need to question it. Ask questions, and get educated. Knowledge is power after all.
3. Trust yourself. You are your own best ally. Knowing yourself and your body is the key to a successful doctor/patient relationship.
4. Make sure you know what your protocol is. You will be surprised how much you don't know about it until you ask someone what it is.
5. This is the one that I have learned too many times to count; Stand your ground. If you don't agree with something, or someone is refusing to accept what you say, repeat until understood. I have had to do this with all sorts of people in the hospital. It's the one that comes up most, and if you don't stand up for yourself and what you think is right, you will definitely feel victimized by the end of a hospital stay.

I want to elaborate more on each of those just so you can get the full idea.

When you are polite and gracious your doctors will like you way more, which definitely makes them more inclined to listen to anything you have to say. And that directly connects with #2, 4, and 5. My mom always tells me "Phoebe you can catch more bees with honey." It is so true!

Understanding your condition and your protocol are required to have any power over your illness. When you understand your illness you will be able to identify things that are happening with your body, and you will understand why you need to be adamant about treating it. Some kids I have seen don't really care what it is, or what needs to be done to treat it, they just go about their lives feeling like victims of something they can't control. Maybe you can't control the illness, but you can control what you are doing to make things worse or better. So ask your questions, be curious about your condition, and treat it accordingly.

Over the 19 or so years that I have been going through my own illness, I have learned a lot about myself. I have learned how my body works, what it likes, and what it doesn't, what it responds to, and how far it can be pushed. I have also learned how much strength it really does take to get through everything I have to. I can honestly say that if I didn't know what I know about myself I would not be here today. It's because I know my body that my doctors are able to treat what they can't see. It's because of #3 that I am who I am.

In my experience the best thing I have ever done is stick up for myself, and my rights as a patient. There are lots of people on your case, and sometimes they do not coordinate with each other. You will probably have to repeat most of what you say over and over again. So make sure your story is straight, and you state what you think. It is not fun to be patient road kill. Believe me when I say that if you are not being your own advocate and standing your ground you will get steam rolled.

All of the things I have listed in this blog tie together in some way. So keep it all in mind when doing anything with medical professionals, and you will for sure make it out a happier patient. We are not just fighting for our lives, we are fighting for the best care, and if we can't act accordingly than we most likely won't get it.

Love,

Phoebe

Cca #6: Transplant?

Lately I have been debating the concept of getting a lung transplant. Now I don't know if any of you know about Cystic Fibrosis (CF), but basically your lungs get so diseased you need new ones, or if you don't want to do that then you risk a premature death. Either way the chances are not statistically good you will reach middle age.

For many years I opted not to even look at the possibility that I may one day get a transplant; I just couldn't look at it. The concept was repulsive to me; the thought of having someone else's lungs inside me, not to mention the surgery itself just freaked me out! My doctors have tried to talk me into it many times, but I was firm in my decision. It wasn't until recently I decided to reexamine the subject.

Now that you know the back story I'm going to tell you my thoughts. For those of you who know I'm thinking about it, (you also know that I'm not really ready to talk about it.....) read on. This is probably the most you are ever going to get from me on the subject. It is a surprisingly highly emotionally charged subject for me right now and probably will be for a while.

I am 95% sure that I'm going to go for it. (!!!!!)

My whole life has been about keeping my body going; it's been about staying healthy and in the meantime spending time with my friends and family living a semi-normal life. I have done a lot in my life. I have accomplished many things that I am proud of. I am proud of them because I do them in spite of my chronic illness. But my disease is tied to EVERYTHING in my life. I do so well because I can acknowledge that the disease is part of me, but not become a victim of it. One thing I was surprised to learn is that I'm actually really healthy aside from my lungs, and my lungs are pretty bad off (capacity at 22%).

So, my lungs are worse now, and I'm at the point where if I don't get a transplant I wouldn't be able to stretch my life very far. I would certainly try, because dying the CF death has never been my reality; it has never been anywhere in my vision of the future. However, it is a part of me, and whether I like it or not there is a fate tied to this disease. I've always taken care of myself, and I've been very adamant about not betraying my body by neglecting it. So to me, this is just that - not betraying my body, and also not cutting myself short. There are things I want in this life that I won't be able to do with the package I have now. I want to spend more time with my mom and my family. I want to marry my incredible boyfriend and spend the rest of my life with him (however long that may be). I want to create amazing things, and have adventures. I want to watch my nephew grow up. Someday I might also like to be a mom myself. Of course there is so much more than this, but those are my personal biggies.

The thought of dying and leaving everyone I love scares the crap out of me. I can barely stand it. And, it's because of them that I'm even willing to take such a risk; it's because of them that my life has been fun and full of love; it's because of them that I'm going to do it. The 95% of me is 100% on board, and the other 5% is just scared, but that is something I know I will work through on my own.

You can bet that when I am COMPLETELY decided I will not turn back. I will be excited for the first deep breath I've probably ever taken. It's weird to think that I don't know what deep breathing is like. I guess my life has just been a series of shallow breaths.

This is a big thing. Yes, it's a gamble. Yes, I could die. But I could also live; I could live more than I ever have. And the life that I've waited 20 years to start finally could. My entire life has been leading up to this point. Everything I have gone through will give me the strength to do this.

I've only ever chosen life, and I'm going to continue doing that.

Love,

Phoebe

CCa #5: Family

I love my family. My family is HUGE. My mom is the sixth child of a family that has eight children. There are so many aunties and uncles and cousins and nieces and nephews that its hard to keep track of birthdays and special days. There is, however, one thing that stands out and that is L-O-V-E.

I know it sounds corny, but my family is all about love and support. We are a family that is dedicated to each other. Let me illustrate: when I was just two years old and had my first hospitalization my uncle Paul drove all the way from Minnesota because he heard I was in the hospital. He showed up at 2am at the hospital because that is when he arrived in town. There are many instances like this that have happened over the years demonstrating the many ways that my family has been there for me. Like the time my aunt drove up from California to help my mom while I was doing home IV meds and made me a special drawer in the kitchen for tea. Or, the when my nana moved up from New Mexico and spent three years in Oregon (away from the sun!) so that she could be near us. Or, the many times my aunt Maxine has come down to Portland with Halloween costumes, Christmas presents, birthday surprises, etc. My aunt Shauna used to sit through every poke and procedure with me because she was the only one who could calm my nerves!

I am lucky. I know that and am so grateful that I have a family who loves me (and who I love right back!) and who support me and give me strength. I am always sad when I hear about a kid in the hospital who is alone. I just couldnt do this alone. Its hard enough just to be sick, but to go through this alone would be unbearable to me.

To my family, I love you with my whole heart! Thank you so much for the love and the laughter and those crazy random instances where you just showed up and made me smile! I couldnt ask for more because I cant imagine any other group of people being more loving or more supportive or more dedicated than you have been.

Because of my family, I will always know that LOVE is the currency that reigns supreme in life. Sure, money is nice, but you cant buy love, man.

Love,

Phoebe