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