Friday, December 16, 2011

You know you have CF when...

On one of the CF facebook groups someone started a "fill in the blank" thread. I got a kick out of them & had to share some of the answers we came up with.

You know you have CF when....

You walk a block & look & sound like you ran a marathon.
your "over night bag" consists of a suitcase carrying all your machines.
You're on a first name basis with the pharmacy.
you sound like crap, feel like crap, but look amazing!
You tell your friends you have to go home to get a good beating.
Your dog licks you cause you're extra salty!
You can eat 4000 calories a day an not gain a single pound.
Your pharmacist knows who you are by your voice.
The receptionist at your doctors knows you by your voice.
Discussing your bowl movement & mucus color is a normal convo.
You can swallow 5 (or more) pills at once.
When at least once during a convo your voice gets crackly.
Your family & friends can find you in a store by your cough!
When your best friend has a bottle of enzymes in her purse.
When you trip on the IV pole in your room while getting ready.
You leave the drug store looking like you bought the whole store.
When your dog can find you in the house by your cough.
You can tell the nurse how to run the IV pole or PFT machine.
You can sleep through anything thanks to your oxygen & vest machine!

I hope you enjoyed these as much as I did! This is only a small portion of the list, but these were some of my favorites. Oh the life of a CFer. Feel free to add on to the list (:

Wednesday, December 14, 2011

The ups & the downs of the CF community!

It's been along time since I've blogged. Now that school is finally out I'll have some time to update this, but that will have to wait a little bit longer.

I wanted to talk about the wonderful CF community for a bit. I haven't been apart of this online community very long, but I can't imagine my life before them. It's this huge support group of people that deal with the same things you do. They are there to celebrate your highs & to lift you up through your lows. They give you advice & someone that totally gets what you're going through. Out of this HUGE online community there are a handful of people that I've become very close to. One of my best friends I've never met in person yet I feel like I've known her forever. Others I can truely say I love them & am so grateful for their friendship in my life. We don't always talk about stuff dealing with CF in fact alot of our conversations don't touch on CF at all, but it was the CF that brought us together to begin with. Many of these friends I won't ever have the privledge of meeting in person, but it still breaks my heart to see them struggle.

It's been a roller coaster of emotions these last couple months for those in the CF community. We celebrated many getting the gift of new sparkly clean lungs & the gift of finally, for the first time in their lives, know how it feels to truely breath. We've also suffered heart break as we had to say bye to too many of our beautiful CF warriors so close to Christmas. Just because you've never met in person doesn't make the loss of a life from someone you had grown close to, someone you celebrated life with & someone who was taken too young from the same thing you have, any less heart breaking. While heart break comes hand in hand when you get involved in the CF community, I wouldn't trade all the friendships, support & great memories I've made over the past couple years for the world.

One of those we lost this this past month was one of my first CF friends. Ms. Hannah Ruth. She was one of the most amazing people I have ever known. She was strong, positive, beautiful caring, determined and so many other things. Through her I have met so many others in our community that I don't know if I would of met other wise. Hannah made me feel good about myself & always pushed me to be better. The night she passed away it was a flood of emotion. I cried for the loss of an amazing friend, but I felt relief that she finally wasn't in anymore pain. I still get on facebook hoping to see a wall post or update from her... if only heaven had facebook. I will always look up to Hannah. I hope that in face of adversity I can be as strong as she was. I love you to the moon & back baby girl, we'll miss you.

During this holiday season I'm asking everyone to please count our blessings. Tell your family & friends you love them & how much they mean to you. Don't take a single breathe for granite. So many fight every day to breathe & far to many families have lost loved ones this holiday season. Remeber the reason for the season. It's not about the presents & the holiday parts, no matter how awesome they may be. It's a time for giving, a time for family & a time to remember Christ.

Friday, September 16, 2011

Our new plan... Things are looking up!

I haven't really talked much about my health since my last rant about my adult clinic doctor saying my 14% drop was my new baseline & wasn't going treat it. That was a little over a month ago and a LOT has happened since! So here is a little catching up.

My actual CF doctor put me a month of IV Merrem & decided to keep the Bactrum I was already on for another 3 weeks. In the first 10 days my lung function jumped up 12% to 45. I felt amazing! I talked about my concerns with the adult clinic doctor with him & it felt so great getting it all of my chest. He told me there isn't much he can do clinic wise. I have to see the adult doctor. She knows more when it comes to lady stuff & bone density or heart problems then he does & because here in vegas we aren't backed by the hospital we don't have the money or resources to have an actual adult CF team. He did say that if I leave clinic visits feeling something should of been done or not happy with what happened to call him right away. He told me that she is a good doctor & he has no idea why should wasn't going try anything, but we do have a close enough relationship that I can call him anytime. He told me that I know my body & my life is the most important thing. He works day and night to keep us healthy and if I ever have any concerns even with something he did to be straight forward with him. He is also the only on call doctor so if it's after hours or the weekend any message left at the office goes straight to his cell phone & he'll call me back. So even though I still have to see the doctor I don't like I know Dr. N has my back!!

About 2 weeks later we had a "family meeting" to discuss where I am in the disease and what we can do keep my numbers up and me off IV's for longer then 3 or 4 weeks. He doesn't feel like my baseline is in the low 30's because I can hit higher 40's after meds. We talked about how this up & down is common for my age and that I'm kind of paying the price of my rebellion of all medically thing from my teen years, but he's proud of all the hard work I've put in over the past few years. We decided to end tobi (yipppe! I've been on that for YEARS) and just do Cayston then try an inhaled Levaquin on the old 'Tobi months". It's more of an experiment, but both my Staph & Stenotrophomonas react to Levaquin very well so inhaling it every other month should help hopefully! We also decided to start pulmonary rehab. That was my idea, but as soon as I said it he was very excited. No only will it help work my body out & hopefully give me more energy, it will also help me strengthen my lungs without damaging any part of me. We are hoping that will help stabilize things a bit. I'm off IV's & besides random nagging pains in my lower lungs that I have my Mom do PT on every night, I'm feeling alright. A bit exhausted from school, but I can't wait for our new plan of action to get started!

I'm so grateful to have such a supportive doctor & a even more supportive family. My Mom is there for everything, & fights for me when I just can't do it anymore. Being back in school has been wonderful. I love learning. & to top it off I've seen two of my best friends in the last month! Both Rachel and Sherise came to vegas for a bit to visit. It was nice having friends to spend time with again even if it was only a couple days. Things are looking up & if I have anything to do about it they are gonna stay this way. I hope everyone is loving life & all it's many wonders out there. It's up to us if we are happy or sad & I am choosing to be happy. I've spent plenty of time feeling sorry for myself & being frustrated with life lately. With things looking up, I'm embracing the opportunity to really focus on my blessings & enjoy living. Life is so much better that way!

Monday, September 12, 2011

I love you to the moon & back Hannah.

One of my dearest friends & by far one the strongest girls I know Ms. Hannah Landess recently did an interview with Fox news in Dallas. It breaks my heart knowing how sick she is & how little the doctors can do to help her at this point of her CF, but she never gives up. This girls a fighter!! Her Dad is a fire fighter in Texas & they're having their annual "Climb For Life" where the firefighters and any other locals can come and walk or run the stares at the Bank of America sky scrapper to raise money for CF. It's gonna be a BIG event! I wish I could be there! I love you to the moon & back Hannah! I hope in the face of adversity I can be as strong as you are. I've always looked up to you. I'm hoping that not only will this video & interview raise awareness of CF but that everyone that watches this video will cherish their life a little bit more. Something as simple as breathing, can be an impossible task for another. Appreciate every moment you've been given. (Below the video is the link to the article)

Hometown Hero: Climb for Life:

Friday, September 9, 2011

Holy Potato, I love Idaho!

I'm super late on posting this, but I wanted to share some of the fun pictures from our trip up to Pocatello, Idaho this summer. My Grandparents, Aunt Spring & Uncle Shan just recently moved up there. We've always spent time in Utah & Idaho for family reunions every summer because my Grandpa's family is from there, but this trip was different. This time we got to spend a week at my Grandparent's house enjoying their company. We ate almost every meal out on the deck in the beautiful weather, we got to visit Idaho Falls & America Falls to feed the fish. We went to the zoo & all our favorite food places up there. It was such a fun relaxing trip. We even got to spend some time in Salt Lake with my Aunt. It's been hard having them not in vegas anymore since they've been here my whole life, but it was a really great vacation. I'll spare you & only put up a few of the pictures & keep the rest to my facebook page so you can seem them there.

The Idaho Falls visitor's center at the Temple

My sister & I in front of Idaho Falls's well.... Falls!

Idaho Falls Zoo. My brothers arms are as long as a Golden Eagles wing span!

Idaho Falls Zoo again.

The tiger was in it's cave for a nap so was the next best thing!

Feeding the fish at American Falls.
These fish would jump out of the water to get food from you!

The river just off the Dam from American Falls. So pretty!!

My Aunt Spring trying to throw Sam off the edge into the rapids!

American Falls! The Dam made these falls in the early 1920's.
The whole town had to pick and move over a bit for the reservoir.

The whole gang besides my Momma

Gotta rep Idaho State Bengals for my Grandpa.
He grew up in Pocatello

A memorial for all the aborted babies in the HUGE & OLD cemetery in Pocatello.

The first known case of CF in my family.
My Grandpa's first son.

Shaved ice at Ross's park!!
I had yummy strawberry daiquiri flavor

Feeding the squirrels at the cemetery is tradition.
We have at least 3 generations of family buried in this cemetery.

We've seen every Harry Potter with my Aunt Spring so we waited till we got to Idaho to see the final movie with her! I've drawn a scar on my forehead for every movie, worn my Gryfindor robes for the last 5. I love being a nerd!

Picnic at Ross's park on our last day! Little fun fact thanks to my Grandpa it's been around since the late 1920's. My Grandpa played in this park growing up!

Swinging at Ross's park.

Ross's park. Full of memories. I love it there

Only in Idaho to they have pizza with Potato!

My lovely Grandparents

The view from my Grandparents front yard!

The garden! Of course the huge things in the corner are potatoes

Monday, August 29, 2011

Moments That Matter Most

"We would do well to slow down a little, proceed at the optimum speed for our circumstances, focus on the significant, lift up our eyes, and truly see the things that matter most! The four key relationships in our life are: with our God, with our families, with our fellowman, and with ourselves.... As we evaluate our own lives with a willing mind, we will see where we have drifted from the more excellent way. Let us joyfully partake of them in their simplicity and plainness."

^^ above is a couple random excepts from a talk President Uchtdorf gave that goes along with one of my favorite videos the church has put out. It's such a simple & sweet video with such a power message. It is so easy for us to get caught up in every day life. We over book ourselves, we spend too much time watching tv or on the computer & not enough time enjoying the simple things or spending quality time with loved ones. I love when President Uchtdorf say, "proceed at the optimum speed for our circumstance." That really hits home for me. There are many times where I have felt inadequate because I've had to slow down or put things on hold because of CF. My biggest example of this was this last spring semester when I had to withdraw from all my classes & move back home with my parent because I had gotten to sick to continue on with school & to sick to live on my own for the time being. This was a very humbling time. I had to realize what was most important in my life and I had to accept myself for all my flaws. I spent a lot of time finding the little things in life that were going right, that I could be grateful for; including all the support I got from my family and some of my better friends. It could do us all good to slow down a little bit, take a look around out the beauty all around us. Turn off our electronics, slim down our schedules were we can & spend some more time loving and appreciating those we have in our lives & all the blessings & beauty that surround us. Don't forget to take time out to care your yourself. Don't lose yourself out there in the world. Always find time to strengthen your relationship with our Heavenly Father. Without him none of this would be possible. Make time for church, go on a date (with a spouse a friend, even a sibling), smile at someone while you are out & about, play games with your family.... ect. Never lose sight of those things that matter most

Wednesday, August 17, 2011

A little concern would be nice.

**Disclaimer: This post is not a happy positive one. I needed to vent and get out my frustration out from the last couple weeks with concerns about my health. Just thought I'd let ya'll know before you kept reading (:

Back story for today's story:

I've explained how our clinic works a few times, but just in case I'll do it again. So here in Las Vegas there are only 3 pediatric pulmonologist & one of those doctors started the CF clinic. At the time there weren't as many adult CF'ers, it was the only CF clinic within 5 hours of vegas and he had his original practice to run along side that so he searched long & hard to find a doctor that could do the Wednesday clinic appointments for adults. When I first switched over it was weird. She had been doing it for years & years so I didn't think much about it plus I was leaving for school. So even though I didn't care for her much I figured no big deal. Well over the last year I've been having a ton of serious complications with my CF. I see my real CF doctor 1-3 times a month since I moved back home in March and before that I was seeing my doctor in Reno twice a month who talked to my doctor back home. I never once I saw the clinic doctor. Well now that I am back I have to see her for clinic every 2 or 3 months. So when I go in to see her she goes well there are a lot of notes here from Doctor N. (my real doctor) why don't you tell me whats been happening, and I spend the next 10 or 15 mins catching her up on my life.

The past two weeks:

*2 weeks ago I had my clinic. I had been seeing the doctor once a week for a month while on IV's. My lung function went back up to almost my base line and things were great. He decided I didn't need to come in the following week and just wait 3 weeks for my clinic appointment. So of course I met with the doctor & we talked about the last 2 months & the complications. We looked at my PFT's and they had dropped 14% all the way down to the low 30's which is lower then they were when I was admitted to the hospital in Reno at the beginning of March. I was sure I was being admitted & I was making plans in my head for being in the hospital. Well she decided that would be pointless and she thought it was just asthma. I told her I've never dropped this much for just asthma & even though I was having wheezing problems I felt like it was more serious then that. I was also really concerned because school started in 2 and 1/2 weeks & I needed to be better for that. She was still sure it was asthma and some steroids would solve our problem and told me she had no idea what she'd be treating if she started IV's s she wasn't going to do it (in my mind I thought put me in the hospital and run test till you figure it out) but she wasn't gonna hear it and sent me out with prescriptions.

* Today I went back to check up on my PFT's (at the clinic again not my main office). My wheezing was gone and I was breathing easier, but I was still exhausted all the time and losing my breath a lot so I knew I wasn't going to be happy with my numbers. I was right they weren't better they had actually gone down 1% more. Not much but something. Instead of me waiting for the doctor to see my numbers they said they would show her when she was done for the day and let me know what she wants to do. I never heard back from them. I want to be put in hospital. I need to figure out what's wrong so I can get through this semester, there is only a week and a half till school starts. But mostly I am frustrated with the lack of concern from the adult clinic doctor. She doesn't know me. She doesn't know what a complicated history I have always had. I'm also hurt that she didn't listen to me when I was talking about my frustration and disbelief that the steroids wouldn't do the whole job, but I gave her the benefit of the doubt. Sure I haven't been through years of medical school, but I have had MY cf for almost 21 years. I know my body and I knew something was wrong.

I am calling in tomorrow to see what the clinic doctor said. If I don't have a serious answer I am calling my REAL CF doctor and asking him about fitting me in this week. He is so great to me. He listens to all my opinions & concerns and tells me as soon as I am feeling sick to call him and he would squeeze me in so that's what I am doing. I am not okay with not being listened to & I am not okay with taking my 15% drop into the low 30's lightly. I have a lot a head of me and I am going to school this semester. My base line is 48-50% not 33. It scares me to see my numbers this low and it scares me to be out of breathe from just getting ready for the day, but some how my clinic doctor doesn't seem to rushed. When I go in to see my real CF doctor I am going to talk to him about letting me see him for my clinics instead of the adult one. This is the second time I had a big drop in PFT's that she didn't admit me when I wanted to be. The first time I ended up being admitted a few weeks later by my main doctor. I need a doctor to listen to me. I need her to show more concern. I just don't feel like I'm in the best of hands & I'm not okay with that.

Phew, that felt great to get off my chest!

Tuesday, August 2, 2011

Blogger Challenge on CF progression & control

A fellow CF'er, Piper, wrote a blog about some questions someone asked her about the tx process & the worries of not being "good enough" to qualify for a transplant. She then offered a blog challenge on how we fell about CF progression & control of it.

* CF Control: the worlds biggest oxymoron.

Every case of CF is unique. Anyone can see that within the CF community & within my own family. All 3 of us kids have CF but there not much we have in common besides our diagnosis and mutation. Why did my sister cultured MAC, but my brother & I haven't. Why do I have no problem with my digestive system and pancreas, but my brother and sister do. How about me going into the hospital or doing at home IV's multiply times a year, where my brother and sister can go a year or more without needing more then oral antibiotics? CF is unpredictable. How can you control something that you can't predict?

A HUGE word within the CF community is compliance. So many people think that with compliance to your doctors every wish & word is the answer to our problems, but the reality of that is it's not even close! I do 3-4 treatments a day, never miss a pill, I'm staying active but I can't seem to stay off antibiotics for more then a month or so at a time. My sister does two treatments a day, does sports all year long for her high school but still cultured MAC & my brother well lets just say he's in the "rebellion stage" I think every CFer goes through where he'd rather not do a treatment and when he misses it doesn't bother him. Yet his numbers are pretty stable and still high. One of the most frustrating things for me is when I am being 100% compliant, but we can't seem to keep me healthy. As most of you know these last 11 months have been hard. I have had my port for about a year now and I have only had it flushed 4 times because it's been in use the rest of the time. Over the last 6 months I've only had about a month or 2 off all together from some sort of antibiotics. I've had a bronch that didn't give us the answers we were hoping for, spent time in the hospital on oxygen because my body wasn't producing enough of it's own & I had to withdraw from school because I was to sick to get down to campus.

Don't get me wrong, compliance is a HUGE part of our lives, but it doesn't solve everything. We still get sick, we still have mean ole bugs throwing parties in our lungs that just don't want to leave & sometimes don't ever leave once you culture them. Now this is starting to sound a little depressing. Yes, CF is a progressive disease meaning it will only get worse, but like I said CF is also unpredictable! No human knows how long they have on this beautiful earth & just because I have a chronic progressive disease doesn't mean I shouldn't plan to live to be 80 years old. I have dreams & hopes that I will work to accomplish till the day I die. I'm working on becoming a special education teacher. I go to church, and hang out with family. I have some of the most amazing friends. At one point I was living in an apartment 500 miles away from my family and doctors and I was doing great! I have plans to get married, have my own kids. Maybe I will even get to serve a mission with my husband one day. CF will never stop me from me dreaming & will definitely never stop me from doing everything in my power to accomplish those goals.

But with all that said I can't be naive. The life expectancy for someone with CF is only 37, but that means there are those who live older then that. Every year there are new meds & new discoveries helping us live longer and healthier lives. I think progression & control go hand in hand. We do all we can (being compliant) to slow the progression of CF & enjoy the lives we have, but we have to know that there is so much that's not in our control. I don't know if at my next appointment I am going to culture a resistant bug of some sort making lung infections harder to treat, I don't know if my next sugar test will show I have CFRD (CF related diabetes) heck maybe I will go my whole life never having CFRD or culturing a resistant bug. Nobody knows, but as long as I am doing everything in my power to stay healthy, helping those around my that are struggling , encouraging those who are doing great & am still working towards my dreams I know I am living a great life and not letting CF hold me back! At times I might be upset, I might break down and cry. There are lots of times I feel so discouraged, but why work so hard to stay healthy to let it hold you down and leave you feeling like less. If I am going to work as hard as I can to stay healthy I am also going to try my hardest to count my blessings and live an amazing life.


Wanna participate in this blogger challenge? Here are the guidelines:

1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.

2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.

3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.

4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.

5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved ones.

Saturday, June 25, 2011

500 miles and the chance of a life time!

About 20 years ago North Stake did a bike trip for the young men spanning 500 miles. They would be driven up to Salt Lake from where they would ride their bikes home. My Dad as a 16 y/o went on this trip! 5 years ago they did this very trip again, this time around my Dad was one of the leaders that got to ride with the boys. This past week was the third time this trip was taken. This time around my younger brother was on the bike, my Dad was support truck and my Momma was part of the cooking crew!

My parents headed up to Salt Lake on Friday to make sure things were in order for the boys who go there Saturday. First came the day of rest then Monday they started riding! We were worried about my brother making it the whole way. For those who know my family you know that all 3 of us kids have CF. Having CF has never stopped any of us from trying something new, but he had to train and plan alot more for this ride then the other boys. He trained with Boyd (one of the leaders, who is also my Dad's best friend, a relative and has done this ride 3 times now) 2-3 times a week and also did the long weekend rides with all the other boys. My mom working with out CF team to make sure he had all the salt and carbs he needed to have the energy and power to make this ride. His first long weekend ride he passed out towards then end from then on every Friday night we had pasta and the week before the ride we made dinners that would help him "carb load". Unfortunately even when you plan everything out there is always those things that aren't in your control. One of those things is the mean Mr. Cold Virus! A few days before the ride my brother was stuffy, had a sore throat and coughing. He did extra treatments and went on the trip as planned. Sunday night he was given a blessing and every night before bed I said a prayer that he would have the strength to make the ride the next morning. Guess what?! He rode all 500 miles!! He even made the longest day with the highest hill. I couldn't of been more proud of him! There ride coming in didn't go as planned. They were back in Nevada so it was HOT, there was a 30 mph headwind which slows them down drastically, and my poor brother was losing more salt then he could consume, but he pushed through and made it. 2 hours later then planned all 80 boys, support trucks and their leaders rode (drove for the trucks) into the church parking lot that was filled with signs, balloons and loved ones to congratulate them! 500 miles, 5 days, only one bad crash between bikers, and too many flat tires to count and those boys have completed a ride that has changed their lives! I am so proud of all of them. Oh and to top it off since Sam started training for this ride his lung function has gone up 15%!

My brother and his friend Ryan during one of the lunch breaks

Sam after riding up the biggest hill on the 2nd day!
Take that CF! Sam just kicked your butt.

The entire group riding home!

Welcome Home!

First thing my brother wants after his hottest ride?
A sip of Mom's Pepsi!

500 miles and he still gets the girls!

Brother and sister!!The balloons were from our Uncle Kib.

So I am windblown and unshowered, but Sam's hair was stuck like that!
Between the helmet, salt and sweat his hair wasn't going anywhere.

Monday, June 20, 2011

Oh June, can't a girl catch a break?

Well it's been a month since my last post and I didn't even get a Fathers Day post written. My second post EVER was actually on Fathers Day. Here is Father's Day post from last year! I love my Daddy and anything I could say wouldn't do him justice.

So far it's been a very long month. Heck it's been a really long 4 months. Anyone who has been following my blog or is a family or friend of mine you know what of conundrum I've been in health wise. I've basically been on some sort of oral or IV antibiotic since February with one hospital admit and also a bronch. The only thing really coming up on cultures is my normal staph but the medications that it's sensitive to isn't making me feel any better. Within a couple days of coming off the antibiotics I drop right back to where I was and start feeling really sick, and at one point I even coughed up blood for the first time. Not fun at all. An X-ray I got in March showed a "suspected pulmonary nodule" which could be an isolated infection which would explain all the problems so we got a CT scan and made an appointment with my doctor. I went into that appointment hoping to have the answer to my questions, but ended up having my doctor show me my CT scan and tell me for my age and numbers my lungs look great! (I know that should be good news, and it still was but that means we still had unanswered questions) We decided next step was a bronch. Maybe I was growing something deeper in my lungs, and it could never hurt to have a good clean out! Well I went in this week because I had sores in my mouth, I come to find out my numbers had dropped again. Luckily they actually had the results to my bronch. So far 3 things have grown, two of which are the same things I always grow and one was a mold. This mold doesn't normal cause problems like I am having unless you have an allergy to it. So they set me up on IV's (two meds I had never done before) and they ordered blood work to see if my IEG levels are high which would mean I was having an allergic reaction to the mold. Long story short I am not back on IV's for the 2 time in 4 months and these two meds are now the 5th ones I've been on in those 4 months. I'm crossing my fingers that this works and kicks what ever in the butt and I can finally have a few months of normal life without feeling exhausted and sick.

Don't get me wrong, even though I've been sick I still have it better then so many people out their and I've been so lucky to have such an amazing support system! Between my family, a friend I've grown very close to over the last few months (you know who are love!) and the other cysters out their that I've become veryclose to. I have such a blessed life, and am lucky to have a CF team that will do anything to help me feel better. I have a few pictures I would love to share of all the fun and good things I've been able to have on the few days I've felt good over the last few months (don't worry I won't show you my Arizona trip pictures again!)

Movie date and relaxing by the River on my last day in Reno.
I miss my best friends so much!

Easter Sunday outfits right after church,
before ALL our family came over for dinner!

Coloring Easter Eggs with my sister

Hanging out with my little cousin Kael.
His family came to visit from AZ!

Scavenger Hunt for the singles ward FHE.
"Take a picture with a trash can"

"Take a picture with a movie poster"
Yes I am kissing Harry!

Swimming with my cousins Sierra and Dulcie!

Tuesday, May 24, 2011

I LOOOVE the summer time!

Why do I love it so much? No it's not because of the weather, for anyone who's been to Southern Nevada during the summer knows just how miserable 115 degrees is. It might be a little because there is no school, but mostly because of the all the traveling and family vacations we get to go on! We just got back from 3 days in Mesa, AZ (which is part of the phoenix valley) for my cousin Mitchell's mission farewell! That was the funnest weekend I have had in a VERY long time. I had missed my cousins Tori and Colten mission farewells, which were my family last to trips to AZ, because I was up at school in Reno. I know college is for getting out on your own and growing up, but I don't think that means you have to go so far away you miss EVERY family get together and celebration. I hated not being able to be there for cousins. So being able to be there for Mitchell was so great. Growing up I would spend every summer break with him and Colten, but I stayed at Mitch's house, so I was always a little but closer to him, but man those were amazing summers with both of them. I am so proud of Mitchell for getting to this spot in this life. He gave a great talk at church on Sunday, and he's going to make an amazing missionary. He's at the MTC right now for 3 weeks then is off to Tulsa, OK for 2 years. Not gonna lie I'm really nervous about him being out there with all these crazy tornadoes, but I know the Lord will keep him safe.

This trip to AZ was like every other! Way too much food, TONS of talking (if you've never spent time with a large group of Houston's you'd probably be very surprised at the things that end up in our conversations), lots of laughing, Bahama Bucks, great pictures, meeting new baby cousins, not nearly enough sleep, which all adds up to one heck of a vacation! My cousins from Logendale and family from Texas were even able to make it! I will never go 2 years without seeing them all again. We even had some excitement on the trip up there. After leaving Kingman, where we stopped for dinner, we saw a van flip off the side of the road. SOOO scary! We called 911 and the boys ran over to help. In the van was only 1 guy and he wasn't hurt, but he was completly wasted! It set us an hour back since the boys had to fill out police reports and what not. While the boys were over the highway helping this rancher who owns 80 acres right were we stopped came up to the window to ask my Mom if we needed help. Scared the crap out of me cause I was pretty sure he was going to kill us! I know, I know I always jump to the worst conclusion, but we all made it to my aunts house in Mesa in one piece and had a fabulous time! The only sad thing was missing out on the lake trip on Monday afternoon since we had to head home a day before the others, next time though! Being on a boat in the middle of the lake with my cousins is the happiest place on earth without a doubt!

Here are some pictures from out trip!

Anthony was using Collin's leg as a guitar while he sang for us!

Sunday lunch after church with the family

Hangin out with baby claire.

Boys and their video games in this family.

Just a (very) small portion of us cousins!
Houston is such a stud.
He must get it from his parents (:

I love me some Bahama Bucks!! Just before we left.

Thursday, May 19, 2011

I am one happy camper!

So after I called the CF Coordinator and told her the office said they were booked and to what until clinic she called them and had them talk to the doctor and of course he agreed to squeeze me in at 4 before they close. Well lucky for me they had a cancellation and could see me at 10:30, wooho!!

So Mr. Doctor Man said for my age (which he called me old!) and for what my PFT's have been he was very happily surprised with how good my lungs looked in my CT scan. I mean they were definitely a CF'ers lungs but nothing to significant. While that is great it still leaves us without answers. We talked a bit about how I have been feeling and then what I thought we should do. Then he listened to me and told me he agreed with my game plan! My PFT's dropped 3 more % since I was seen two weeks ago. We put me on 2 weeks of orals then 6 days of prednisone. We are also setting up a bronch to give me a good cleaning out and to get some cultures of deep down in there to see if there is stuff growing that isn't showing up just from regular cultures. He is worried that I am growing Pseudomonas again. But after we figure out what is being so mean to the my lungs we are going to do an aggressive round of IV's and get me in tip top shape!! I left very happy with our plan, and ready to kick some CF butt!!

Life is too beautiful to just sit back and watch it pass you by. So I am taking some serious initiative and getting myself back to my base line then I can work on getting higher. I got alot of life to live still, so here is to a long road ahead but a very bright future after that! I would like to thank all my family who has helped me and been so encouraging during these last few months of being sick so often. I would also like to give a shout out to all my wonderful cysters that have been so uplifting and encouraging. We might of never met and maybe never will but man it's crazy how fast we have built a relationship. They are all so amazing and strong, love you guys!