Rebellion...

Today my new tattoo completed it's healing. It has officially become a PART OF ME. There is no seam, no more scab, no more pain.... just me. A colorful me. I have always been interested in tattoos, since i was young i liked body art. I don't know how old i was when i first dreamed of a tattoo, but i must have been quite young as i have a memory of wanting a purple butterfly on my knee...
Tattoos are for sailors and drunken old biker men... They are for the alternative life-style type, they are not for the preppy, chronically ill, goody-goody type.. or are they?

I say they are!

I was thinking about how now i have finished my tattoo career, not because of my own choosing, but once i receive new lungs, it is no longer wise to adorn my body with art from a needle (as the infection risk is just not worth taking). I have always been so fascinated by this practice. For me, it has been a way to put something that is apart of me on the inside on the outside, how to adorn my body with beauty and take control after my body has been ravaged and deformed due to my CF. My first piece of body art was when i was 7 years old, i got my ears pierced for the first time. I remember my third piercing was in my cartilage, and i was only 13, which got a lot of respect from my peers. It was my first piercing done with a needle and not a gun. I was so proud of my piercing, but man, did that healing process hurt. I remember my mom turning and cleaning my earring for me and crying because it was so sore. I think we had to soak it and soak it, but i was never infected, just took a long time to heal. I remember for a long time after, if someone knocked into me it would be sore. But i never took it out. I still have it. It is a small badge of courage.

I currently have 9 piercings: 8 in my ears and 1 in my belly button.
I have 3 tattoos: 2 on my back and 1 on my ankle.

I was never a rebellious young person. I did what i was supposed to, i followed the rules, i did what was asked. I never rebelled against my treatments for CF, i just continued on....
I realized today that this may be my way of "rebelling" most who look and act like me don't have this many adornments of their bodies, it is thought of as "alternative" maybe this is my "alternative" to rebelling...

There is not an adornment on my body that i am not proud of. I thought i would take this installment of my variety show to explain the story behind my tattoos....

Tattoo #1
My zodiac sign of cancer. I have always identified with my summer birthday, the summer is the time when i feel most alive, healthy and vibrant. I feel that i personify the qualities that are described as "a cancer"
Emotional and loving
Intuitive and imaginative
Shrewd and cautious
Changeable and moody
Overemotional and touchy
Protective and sympathetic
Clinging and unable to let go
This describes me pretty well.

Tattoo #2
A purple rose. Cystic fibrosis has a nick name of "sixty five roses" The rose has come to be a symbol of CF. Therefore the explanation is pretty simple. My idea behind it is to put something beautiful on my body that spoke of CF instead of my chicken legs, pot belly, big chest, and clubbed fingers...

Tattoo #3
The Koi. This tattoo has been years in the making. Because of my "Obsession" with tattoos, i have always admired those with big pieces on their bodies, not just any tattoo, but a beautiful one. Obviously not all art is created equal and neither are all tattoos. I was on a search for the best artist i could find, no matter the financial cost (well, within SOME limits). My priority was a beautiful piece of art to symbolize my journey.
There are many japanese and chinese myths about the Koi, one of them describes the Koi as swimming up the waterfalls to reach the end, at a gate where the Koi is to transform into a powerful dragon. The Koi is also described as one who if caught will calmly lay waiting for the knife without a quiver, just like the samurai for the sword. When it is shown with flowing water, it is to symbolize courage, perseverance, and the ability to attain high goals.
I find strength in this meaning. I am coming upon the hardest fight in my life, that at the end of my CF lungs journey and the beginning of the new journey with transplanted lungs. I don't expect it to be easy and i hope to draw courage from the beautiful art that i display proudly on my back.
The other elements in my tattoo are the colorful vibrance of the fish, which symbolizes my personality. The Koi's strength and vibrance exemplifies the courage and strength it takes to mentally and physically "swim" through the journey of chronic illness. I find a lot of the beauty is the contrast of the delicate cherry blossoms which symbolizes the the delicate nature of my sick body. I find it beautiful and inspiring... I hope that you will now understand my reasoning for my "alternative" way of life.....

Normal today

I had a great relaxing weekend. I spent time with my Casey, slept, ate, and spent time with friends. I even cleaned the cat box and did some dishes, and folded some laundry, and even painted. It sounds sooo busy to me, but i felt pretty good. I just finished Cayston a drug that i can only take every other month, and makes me feel fabulous because it works so well to control the infection raging in my lungs. But i was able to do some "normal" things that others do tediously every day, but to have the energy to take care of some stuff in my own house felt quite nice. Don't get me wrong, when my mom arrives tomorrow i will be thankful to have her help (and need it), but being able to feel a little normal for a weekend helps my mental sanity.

I must say that despite the fact that my lungs are having a hard time and i need more help. It was a nice respite today to spend time with two of my really good friends (and Casey) and eat sushi and wine, and go for a small walk on the park, then sit and enjoy eachother's company and the nice evening. Having friends like these, who rise to the occasion to adapt to a world that i can do, means so much to me. I notice every offer,every visit, every washed dish, every errand, every kind word and i thank you.... it really means so much to me and helps me keep fighting on.

I guess i still can feel normal and like myself in this sick body of mine....

A little plastic surgery

I figured my blog needed a facelift but I held off on the breast augmentation,a variety of other facial reconstructions, and the lower back shaping since Heidi Montag looked a little alien-like after all her surgeries (Trash reality TV refernece). So I am back and fancy as ever...

Over a year later....

Well, I guess i am back in action. Because of high demand (6 signs of support on facebook) I will resume posting on my blog. I am not sure what will come of this, as sometimes i am hesitant to share stuff because the big wide world can read it. But I will see what authentically comes up, as the story of my life is crazy, funny, scary and totally predictably unpredictable. Casey will comment on my bad grammar but he will just have to deal with it ;) I will probably spell stuff wrong, and sound like a total idiot, but I plan to try to keep this up.

I am reading Julie and Julia, in which Julie is keeping a blog about cooking all the way through Julia Child's cook book. She is encouraged by her readers and feel that they "need" her. I guess in some respects i am doing this because I "need" YOU, my readers. My life is so crazy these days that i feel like i need to share it and document it. To allow my life to not seem completely meaningless I need people to witness it.

I noticed the blog post that came before this one, Memorial day last year. I would have never guessed that I would be where i am today one year ago. My day now is scheduled with treatments and eating and sleeping, with appointments scheduled in between. I spend a total of 4 1/2 hours doing respiratory treatments. This seems outrageous to me (and my doctor) because just a few months ago i only had to spend at most 2 hours. This is not only because i need MORE, but because i needed to change the modality that it is administered. I can no longer use the VEST, a mechanical device that helps clear my airways which I can use completely independently, but now it makes me suffocate and does not clear out the viscous and vicious crap that is stuck in my lungs, as well as it used to. So i now must do the nebulizer treatments separately and it takes 45 minutes for nebs and 45 minutes for CPT beatings. So my life is consumed 3 times a day. I also have to plan out when i eat...
I am on the early bird special dinner diet. I must eat by 6pm if i am to get to bed at a decent hour. I need time to digest before i cough for almost an hour. The alternative is not too pretty. So basically i am trapped by this disease these days... I am trying to live as well as i can, but there isn't much left that i can claim as my own. The other thing is that my mom has to make my meals and help me with things like laundry and dishes, because i just don't have the time and energy. It is a family game, my mom, dad, sister, casey, and a variety of you wonderful friends help to keep beating and feeding me. It is a task to keep weight on and work so hard at coughing and sleeping... Doing nothing takes a lot of work!
Today is Thursday so my sister is coming! YAY.
Right now the Oxygen guy is here taking my R2D2 human-sized tanks and filling them with icy-cold liquid oxygen. It takes about 20 minutes for him to roll them out fill them up and bring them back... it is just constant motion keeping me breathing...

Now it is neb time again...

Memorial vacation!

I am back from a fantastic vacation! We left on Friday and came back yesterday, Tuesday. We had to first attend Casey's sisters graduation, and party, then we headed out to Murphys.
Saturday was a day out on the lake on the Ranger. WE CAUGHT FISH! Mucho fishies. My mother caught the mother of all fish (hehehe, pun intended). We didn't weigh it, but it was large, I would guess a 5 pounder. The most remarkable thing is that it got IN THE BOAT. My dad helped by tackling it. It was a great exciting thing. I caught a bunch that day, and Casey probably pulled in the most. It was a great day! After we got off the lake at about 730pm we picked up pizza and beer and some figgy sticks. We chowed down and it was fantastic. Figgy sticks are these amazing cinnamon rolls with frosting that are delisious with beer.
The next day we took a day off of the lake and had a Picnic at Indian Rock Winery (on our street). My parents know everyone now, so it is fun to know people...They had live music, tri-tip, potato salad, and free wine. We drank and ate and relaxed in the sun. This whole weekend the weather in Murphys was only about 83-85. It was perfect! We walked over to the indian rock pond, where they have GIGANTIC trout. I realized i had had a bit too much wine, and then we proceeded inside to try out some more. I had to stop and start drinking water since I felt a little tipsy. We hung out over across the streed at the Barn, which is a little store that our friends in Murphys own. It is such a cute place with art and fun stuff... They are having a gopher problem and the new thing is to chew up gumballs and drop them in gopher holes to take care of the problem, so I offered to do the chewing. I can't resist candy! That was fun, but when you chew 20 gumballs your jaw starts to kill. After all this we headed to downtown and did some more wine tasting (Casey drove me). We came back and had BBQ hamburgers for dinner. I did a treatment then passed out. Drinking in the day is very tiring.
Monday we went out on the lake again, and caught more fish. I caught a few, but not as many on Saturday. My dad was the kingfisher that day... he kept pulling them in. The fish I did catch were decent size, so i was happy with that. It is so nice to hang out on the boat all day. It is nice to soak up the rays. We got a good ride in, it took about 20 minutes to get to the fishing spot. Nothing beats going 45 mph on the water... I LOVE IT! We had an amazing encounter with a bald eagle. He sat on a branch, and we trolled around on the water and got to admire him. He was probably 20 feet away. We got some great pictures, which I will put on later... We also saw a snake swimming across the lake, my mom thinks it was a rattler, which freaked me out. Gives me the chills, but it was cool to see. It was a great day!
It was nice to get away from all the loss, and just get a vacation. My lungs did well, and i feel good. usually I feel pretty exhausted after vacation... but i feel good.... i still need to rest, but i am not worried about crashing this time...

Do a little dance

Do a little dance, make a little noise, MOTHERS COOKIES ARE COMING BACK!!!!!!!!!
I can stop wearing black now....... and crying myself to sleep.
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Time goes by....

I am sitting here thinking about how amazing time is. Sometimes it flies by, when you are enjoying yourself, or have a million things to do, and can't get them all done in a given amount of time, or it just slowly ticks as if life will never come to an end. I am feeling somewhere in the middle right now. This morning buzzed by, but now it is going slow, as i don't feel so hot. This weekend was supposed to be fun and productive, but it turned out to start out fun fortunately but that didn't last long. We had our friends Kristy and Ben over for dinner (yay) and we ate and watched a comedy DVD, which was great fun. I was really happy by body held out for it. Then right as they left, BOOM. I started to feel like crap. I know the reason i felt like crap, so don't go reporting me to the CDC for Bacon lung... I took my first dose of Actonel, for my bones, which I was hoping would heed better results than the fosamax, which I was severely disappointed, did not come to fruition. I got a fever at about 11pm, it went away by 1pm but came back with avengance at 3:30am, to shakes, chills, nauesa, tachicardia, and oh yes, puking. I think i have thrown up more in the past 2 months than I have my entire life. I need to stop making this such a habit. Well, anyway. I had to deal with that until 530am. I finally fell asleep. Then about 11am i woke up with it again, however not as bad. Anyways, to say the least it wasn't fun. Then on Sunday I had this weird eye pain, so i could only look straight ahead, then last night i developed this weird pain in my foot, inside my bones. Not fun at all. Well, I am just taking it easy now, trying to feel better. My body feels like it was hit by a truck. I am not sick anymore, but I feel like I need to recover from all of it. So that is what i am doing. My wonderful mom offered to pick up my groceries for me today, so i get that help, then i am going to make fresh pesto pasta for dinner and artichokes. YUM. I guess that is all for now. My mother will be here shortly with my delivery... just gonna waste some time now.... i mean rest...