I want to be an AVATAR!

This Friday our friend Crystal B. took Ryan , Lyndsey (Ryan's sister) and I to Olympia to watch AVATAR in 3D. It was the BEST movie I have ever seen. The producer of the movie James Cameron is an on screen genius! He puts so much thought and detail into his work and makes you really believe in this place called Pandora where the Na'vi people live. It took him 14 years to write, create, and finally produce a movie he couldn't so many years ago due to the lack of on screen animation/special effects.

The best part of this movie besides the stunning visuals, was the connection between the Na'vi people, their animals, and plants. It was beautiful to see everything come full circle. Becoming one with nature so to speak :) Avatar brings us as close as cinema ever has to actually visiting an alien world. The beautiful enviorment, the exotic creatures and incredibly lifelike natives of Pandora arrest the senses, visually, aurally and emotionally.

It will be a long time before we see any movie of this magnitude. Go out and see it soon. If you do I highly recommend to watch it in 3D or even at the IMAX!

Its only been 5 months!

Well, its only been 5 months since I have last posted a blog. I think that's far too long :) So many good things have hapend since this summer that I don't even think I have enough room to type it all in detail so I will briefly list them.

* I'm ENGAGED :) (Will def. post proposal story and pics next)

* Emily is now 4, and my mother and I took her to Disneyland for her birthday

* I moved to Central Park with Ryan aka: the love of my life

* My health has stabilized, I feel better than I have in a couple years , I have increased my oxygen intake in my lungs by 1/2 liter :) HUGE SUCCESS.

So there you have it..... all great things.

They started me on a new medication which has made it possible for me to live and enjoy life again. I can grocery shop with Emily, clean my house, and do other fun things WITH energy and not feeling like I'm ready to go to bed at 11am after just waking up for my day at 7am. Because of this my o2 level has increased which makes it possible for me to just wear my oxygen when I'm working out. SOOOOOOOOO Happy about that one! By no means are my lungs good or will their ever be, all this means is that I am able to hold off on transplant until I start to show signs of shortness of breath to the extreme at which it was. They will check my progress with PFT'S (Pulmonary Function Tests) every 3 months and determine where I am at. I completed the whole transplant workup process which took 3 months and a TON of appointments. They said that I would not have to go through the entire process again but things like blood work and pft's would have to be re done when I'm ready to be listed for transplant.

Overall , I enjoy life more now than ever. I'm so thankful for my Christmas wish come true. I just wanted to be able to breath. God is good!

Its SWINE time!

So...... as you can see with the picture attached to this blog you probably get the hint. No its not that i love pork but it is that i was just diagnosed with SWINE flu. The fancy name being Influenza H1N1 virus.

In my previous post i was complaining of mouth pain. Mouth pain turned into stomach pain, night sweats, constant fevers, fatigue, and many other things i don't think are too necessary to post :) I checked into the UWMC emergency room on Friday night with a heart rate of 125 and oxygen saturation of 72. Both NOT good! ER docs ran all the normal tests and decided to keep me for the weekend to see if any of them came back for any viruses or such. I was sent home Sunday evening as I was feeling much better only to receive a phone call this morning saying I tested positive for the "H1N1 Virus" I remembered from all the media frenzy that that fancy code word was short for the swine flu. I asked the nurse if that is what she meant and she said yes unfortunately. How fun! So all this time that they couldn't find anything out I had the swine. I'm on the tail end of it now and received antibiotics today to help me through it. All in all its just one more near death medical experience for Lisa to add to her list. OINK OINK!

My little PIKE

Emily Started swimming lessons at the YMCA 2 weeks ago. She was in the beginners "pike" class and did so well. Monday - Thursday for 2 weeks was quite a bit for a 3 year old I thought but she handled it wonderfully. She still needs to work on putting her eyes underwater when told by the teacher. On her free time she jumps under the water like crazy but when the teacher tells her to put her eyes in she does not do as well. We are going to start the Pike class again on Monday for another 2 weeks and hope she graduates up to be an eel!!!!

She made a lot of friends in her swimming class, but there is a little girl named Aden who she seems to just get along way too good with. They often get each other in trouble for talking too much. Adens mom and I sit next to each other during class and we decided to put the girls in the upcoming soccer class and dance camp. Its so beautiful to see Emily come into her own. To see what excites her and what she is good at. Im finding that her warm personality and outgoing-ness is a sign of the woman she will become and I just couldn't be more proud. Its a joy and a pleasure to be a mother to such vibrant and loving little lady.

Baby Steps

July 1st I went back to see my new pulmonoligist for more PFT's (pulmonary function testes) We have been doing them monthly to track my lung function and see if i am staying the same or getting worse. After the PFT's I was shocked to hear the results. In a PFT there are many levels of lung function that they monitor but the 2 most important are the FVC and the FEV1. The FVC is the forced vital capacity which measures the total volume of air expired (pushed out) after a full inspiration (breath in) The other level is the FEV1 which shows a decrease in percentage in patients who show an obstruction and narrowing of the airway.

Last month's FVC 79% of predicted
This months's FVC 77% of predicted

Last month's FEV1 35% of predicted
This months FEV1 31% of predicted

After my PFTS my mother and I sat down with the pulmonologist to go over the results. I asked him what the FEV1 meant and at what percentage he would become concerned with lung transplant. His response was, " I was concerned at 35%!" He said that this category is important in my disease as it shows the obstruction and the narrowing of my airway. He explained that when we get sick we naturally decrease our lung volume and the liters of air that we are able to take in and push out. With my level of function being so low already , getting a run of the mill cold or flu could literally kill me or put me in the hospital until i could breath on my own again. Ok with this being said there is more to this story.

As of Tuesday of last week I no longer have my Dr. , my partner in crime though all of this. His name is Jack and he has been with me since the extraction of my castlemans tumor. He is my comfort, my courage, and the reason I am so educated in my disease. To lose him at this stage of the game is devastating to say the least. He has moved to a different clinic and seeing him is just not possible. Now, I can see a college of his who is actually his attending physician BUT its not Jack. I feel like I'm starting all over at square one in many ways. This new pulmonologist that I am hooked up with does not have a go get em attitude. He is afraid to answer the hard questions about my destiny. I do not think his personality and mine mesh. I absolutely do not want him dealing with my care. I need a Dr who is willing to speak to me a very matter of factly. I need someone with a plan for a plan with a plan. I don't have time to wait to get sick. I am sick. With this said, I am now looking for an Oncologist, Pulmonologist, and a local dr to help me here when i cannot make the 2 1/2 hour drive to Seattle.

Last week I started experiencing mouth pain consistent with the pain that I felt with my PNP breakouts. My lips are bleeding and broke open. I have not been eating well as it hurts so bad. My mother made me some homemade soup and macaroni salad because she knows that I could get that down. She is so thoughtful and so sweet. Its almost like the PNP is only affecting my gum tissue right now. That means every tooth feels like its loose and about to fall out of my face. My lips are burning all day and I have to keep Vaseline on them again constantly. This blog is helping me track my progress and helping me put out how I REALLY feel about all this. What a crazy week it has been. All I can say is I have one goal for this week and that is to find my new team of doctors who are going to help me get through this. That is step one....

Baby steps.....
Baby steps.....

I can remember...

I can remember being a little girl and all I wanted was a pony.

I can remember being a teenager and only wanting a car for my 16th birthday!

I can remember going to college and wanting nothing more than to become a teacher.

how many kids will i have, how many pets, where will i live, who will i marry, how much money will i make..... all questions a young lady might ask herself in trying to plan her life.

As a young adult i have learned there is no such thing as "your" plan. Gods plan is "the" plan!

Here I sit on a Friday night. My little one fast asleep in her bed......

All that is running through my head is Gods plan, and how I have no control over so many things.

............I can remember being a young lady of almost 26, sitting in my house on a Friday night and only wanting , needing, and desperately asking for one thing...... My life.

Cups, Gardens, and Lemons Oh My!

The way in which we choose to view life usually shows what "kind" of person we are or better yet the "way" in which we deal with stresses and hard times. My silly , amazing, loving, caring, unbelievably adorable boyfriend has in this short time of knowing him made the most simple sayings resonate through my soul like you could not believe.

"Life is a Garden, Just Dig It!"

"When life gives you lemons, say *&^% the lemons and bail!"

"Is the glass half empty, or half full?"

I'm going on the record and saying that this boy, has a way of making the simplest things that I have heard a million times like, "is the glass half empty or half full" make more sense than they ever have. Why does it make so much more sense hearing this from his lips? The only reason I can think of is that I not only trust his words but feel confident that what he is saying is worth listening to. Anything that comes out of his mouth no matter how insignificant it is ..... I listen. I now understand why it is so important to surround your self with people who uplift you, inspire you, and people that you respect. Yesterday when Ryan (the man) asked me if my glass was half empty or half full, i laughed. Later that night when I was getting frustrated about my upcoming Dr's appointments, and all the crap that goes along with them the first thing that popped in my head was "half empty or half full!" He probably has no clue that because of the love I have for him and how much I respect him his simple words will stay with me forever. I don't think I have ever allowed myself to love like I am now. Its a beautiful thing to experience.

All I want to be able to do 100% of the time is be able to have the strength and courage to face this hurdle (my health) with grace and determination. I am lucky enough to have my little girl as my driving force, and my Ryan as my Oz, like the Wizard of Oz. Whenever I need those little bits of inspiration and insight I will go to Ryan to hear such things as, "When life gives you lemons, say f&*% the lemons and bail!!!!!" haha ok maybe not that one but you can see how he can put a smile on my face :)

Totally Inspired to get my head out of my REAR!

Last night was one of the weirdest nights I have ever had. The impossible has been done. I found another person with Paraneoplasatic Pemphigus (PNP), and she is ALIVE! Those who have followed my struggles with PNP and my Castlemans disease know that I have felt so alone in all of this as most of the people who have PNP die before you can get the chance to speak to them. Her name is V and she is the reason for me getting my head out of my ass. She is the reason I start this blog/journey today.

I think I have always been afraid to track my progress, set backs, and emotions through words because they are hard to look back at. Hard to see the pain that I was feeling at that moment and in general I just didn't want to be the "sick girl!" Not anymore. In most peoples eyes I am the "sick girl", the girl they pray for in church. The girl that when they pass by me in the grocery store they say to me, "Well it was nice seeing you, I hope you feel better." Whatever category you want to throw me in is fine. I will no longer pretend that I do not struggle every day with fears of the unknown.

The biggest issue that I have been facing latley is my most recent diagnosis of Constrictive Bronchiolitis. It is a rare and life-threatening form of non-reversible obstructive lung disease in which the bronchioles (small airway branches) are plugged with granulation tissue. My lung function is now HALF of what it was and should be. The things I have always loved to do like workout, DANCE, and run are something I will never be able to do again unless I recieve a "successfull" lung transplant, or recieve some sort of divine intervention (MIRACLE!) :)
Walking hand in hand with my 3 year old daughter reminds me daily of how ANGRY I am for this dreaded lung disease. "Mommy catch me!" "Mommy lets race." words that would normally bring a smile to my face, now bring tears to my eyes. I push myself! Emily helps me stay strong and in charge of my emotions. I love her for this.

Looking up information on any of the 3 diseases that I have (Castlemans Disease) (Paraneoplastic Pemphigus) (Constrictive Bronchiolitis) you will find one common thread. The word that gets me every time...... Fatal. I have my moments but overall I have always remained very positive about the hand I have been dealt. So much so that most people arent even aware at how severely limited I am in my day to day life. I say this because I have never felt like it is my time to go. I have been told countless times that I have less than a year to live, even been told that I would be lucky to make it out of surgery. I am still here. Fighting with a purpose and a love for life. I would like to think that we have a loving, understanding, and patient god. I know him to be all of these. I know that no matter what path he has chosen for me to go down, or what time he chooses to take me from this realm the outcome will be no diferent by me not LIVING my life today.

Through this blog I made a promise to myself. To say the things that I want to be heard in such a way that it makes you question YOUR spice for life. To be honest and raw without holding back. Im sure not all of my posts will be uplifting and empowering but thats life and thats me. I would be lieing if i said I lived a life of optomisim, and fearlessness. I know I have never meet anyone as optomistic as I am but when your dealing with an illness of this magnitude, I dont think you could ever be too optomistic. My journey is just now begining. There has to be something left for me to accomplish out there.... I cant wait to see what that is!