Tuesday, February 21, 2012

Day 18 of 30 day blog challenge

5 Things that irritate me.

1-People that complain about something they have the ability to change or do something about.
2-Most self portraits on facebook, but more specifically self portrait addicts, you know the one friend that does it ever day, maybe even every hour, and the from up above shot, and OMG the duck face pout "I think I'm hot kiss face". I honestly think I could do a whole post on things that irritate me about facebook.
3- People that are not appreciative of what they have.
4- Jersey Shore. I simply cant stand the fact that they make millions off the degrading, distructive behavior they display. Also hate the influince it has on young people.
5- People that still use their cell phone in the movie theater! Turn it off or I will turn you in! Yes I'm the tattle tale :)

Saturday, February 18, 2012

Day 16 and 17 of 30 Day blog Challenge

I'm doing day 16 and 17 together.
Day 16 - Describe a passion you have.

I like to think I have a lot of passions in life. But I think mostly their just interests. What I can tell you I know I'm passionate about. Being a mom, I love Colton beyond anything I could ever imagine. But it's not just my love for him I'm passionate about, it's raising him to be a wonderful man, husband, and citizen. Love is not enough to do that, I mean yes it takes lots of love and patience, but it also takes the right kind of discipline and guidance. The love is the easy part, the other stuff not so much, but I love him enough to teach him the difference between wrong and right. I would not be doing him any favors if I didn't.

Another passion of mine is my husband and our marriage. We have been together almost 9 years, married 8. When we got married to each other we talked about it a lot, and even had to have per-marital counseling. Both our parents are still married, and we verbally agreed before the wedding that divorce is not an option, ever! We had a few rough years, and let me tell you it was not easy! But we came out of it stronger then ever and I am so thankful we both have the drive to fight and never give up on each other no matter the obstacles.

I am passionately in love with my dogs!

My last passion that really gets me excited and feeling full of life is Drag racing my 69' Chevelle! I can't wait to have it back and running again, there is no other feeling like running 103 miles an hour down the track, trying to get the best time and beat the guy next to you. Track opens in April!

Day 17 - How you hope your future will be like.

Long, healthy, and hopeful!

Wednesday, February 15, 2012

Day 15 of 30 Day Blog challenge

Something you don't leave the house without.

My purse. I was thinking my cell phone, but I forget that, a lot actually, and at the worst times too. Like when I'm running late, or like the other day I suppose to be meeting someone and needed to call them. I've been known to leave my purse to though, and not just at home, restaurants, doctors offices, and store dressing rooms. Brad always ask now when we get in the car "got your purse,got your cell phone?" I always answer yes, and then sometimes I will say yes, no oh s#*t! LOL

Tuesday, February 14, 2012

Day 14 of 30 Day Blog challenge

TV show (or shows) you're currently addicted to

The Voice, I love this show! I don't like very many of the music shows like American Idol, or X Factor. I like this one because there isn't judges, there is coach's, and they don't get to look at the person while they are auditioning, taking away the ability to judge them by what they look like! Then the coach's choice whether or not to turn around and see them, giving them the chance to be on their team. There is some great talent and I love Adam Levine, he's one of the coach's.

MTV's Teen Mom 2, follows 4 teen mom's through life and what it's like to be a teen mom. It has a lot of drama sometimes, and I think some of them are not the smartest, but they are young and I hope they learn and their babies grow up to be great people.

Biggest Loser. Probably don't need to explain. I dislike Conda, I don't care that she is from my home state, about 40 miles from me! She is not nice and cause's un- necessary drama.

Ink Masters. It's a tattoo reality competition. Tattoo artist (I don't remember how many they started with or how many are left) compete for $150,000.00 and the title of Ink Master. They do challenges and accredited tattoo artist in the business judge them and eliminate based on skill.

There's a few, I enjoy TV very much, so I have a lot of favorites.

Monday, February 13, 2012

CF Advances and my thoughts on it...

Here's an article about Kalydeco. Press Announcements FDA approves Kalydeco to treat rare form of cystic fibrosis

So it's kinda old news, but I wanted to write about Kalydeco. It's the newest drug on the market for CF, more specifically for CFers that carry the G551D mutation. It is a small portion of the CF population, around 5%, but it is still a huge wonderful step in the right direction for all of us. I am EXTREMELY happy for those it will help, this is what I fight for, fund raise for, and dream of. They are currently working on another drug in connection with this one that will target the most common gene mutation DF508, I carry 2 DF508's. It is in clinic trials right now, and when I spoke to my doctor he said depending on those results it may be up for the FDA to approve in as little as 2 years. It took Kalydeco about 2 1/2 years with trials and the FDA approval, it was the fastest the FDA approved a drug, ever. I'm hopeful for the drug that will help me.

That being said, it's hard to put into words my thoughts on new drugs and my thoughts on a cure being found, but I'm going to try. I grew believing I would die young. Now I don't want this miss con-screwed, my parents never said your gonna die young, but they also were always completely honest with me in an age appropriate way, and instilled in me how important it was for me to do my treatments and take my pills, because yes the predicted age is young, but no statistic holds your future, God does. I for a long time had hope for a cure, and was continually told they were so close, 10 more years, 5 more years, it's coming. I went through getting promising new drugs and treatments such as Pulmozyme, TOBI, and The Vest. I seen results with all these things, but it did not stop my progression. As I got older I came to believe a couple things, I was not going to live to be 30, and there was not going to be a cure in my lifetime. I still believe one of those things, I'm 29 my birthday is in October so I think I will make it another 8 months, God willing. I still believe there is not going to be a cure in my lifetime. I'm optimistically/Doubtful, I hope that there will be for the new generation of CFers, but I'm very doubtful for some of my generation. The new drug has been proven in the short term to improve lung function by about 10%, more for some, and the ability to gain average of 7 pounds, which don't seem like much but is a huge deal for some of us. Let me put that in perspective for what that would do for me, if the one for my gene comes through and I'm in the same health I am now. My lung function is about 37% out of 100% right now, my weight is at 130, I need to be at about 140. So if I was to get the drug it would bring my lung function to about 47% and my weight about 137 (these are estimates). I would still be under weight by 3 pounds, and my lungs would still have permanent damage, and I would still breathe with less then 50% lung function. Now let me tell you I would be grateful for that, I really would, but honestly it's not going to improve my life that much. What it might do is, pro-long my need for a lung transplant, or for better drugs and once again yes I would be grateful for that, just like I am grateful for the other drugs and the vest getting me to where I am now. It's just a never ending race, I am chasing my life expectancy, and quite honestly I get tired of running the race. I would never give up, but not because of me because of Colton, Brad, and the rest of my family, they would kill me themselves if I gave up! This is my outlook for me in the situation I am in right now. I think this is huge for the young children and young adults with CF and it will most likely have a huge impact on their life. In an article I read about kalydeco it said that of the CF population 49% is above the age of 18, that is great but that still leaves 51% children, to me this is still very much a children's disease. More the half are still dying in childhood. The average number of CFers in the United States is 30,000, and that never changes because people die daily from CF and babies are newly diagnosed daily. Both those facts hurt my heart. But that's also why I continue to raise money, because I may have doubt's for my chance to see a cure, but I haven't given up hope for the babies. I just Pray I am proven wrong!

There is a whole other reason why I don't think we will have a cure but I'm not going to go into that one right now. Maybe another day.

Day 13 of 30 Day Blog challenge


*FYI* I skipped Day 12 which was, Your relationship status. That was clearly identified on Day 7.

A few of your favorite quotes, mottos, or versus.

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

"You can't change your cards, so you might as well play the hand you were dealt." I don't know if this is someone else's, it's just something I've always said, kinda my motto.

"No matter how bad you have it remember someone else always has it worse" Mom and Dad told me this growing up if I was dwelling on the bad in my life and feeling sorry for myself.

"Be still and know that He is God" Psalms 46:10

Sunday, February 12, 2012

Day 11 of 30 Day Blog challenge

What's in your makeup bag/purse.

I have loved purse's and carried one for as long as I can remember. Funny little story. I was about 5 or 6 and was with my Grandma and Mom somewhere I don't recall the exact place, in fact I don't really recall this story at all but it has been told to me by Grandma, she still thinks it's funny. I caught her getting in my purse and I declared "Get out of there, I got important stuff in there", who knows what was in it, probably one of my Mom's old drivers licenses, a chap stick, and maybe some change.

Today's list of "important stuff" includes.
-My wallet
-My checkbook
-My truck keys
-My new prescription for sleepiness
-Pill container with enzymes, pain reliever, and vitamins in it
-A small note pad with a little pen that sticks in the side, it was just to cute to pass up a JoAnn Fabrics for a $1
-3 Pens
-A pair of Purple knit gloves
-A portable hair brush, this thing is the size of a pocket mirror with a bruch that folds in and out, got it at Wal-Mart for .97 cents, my long hair get snarled easily.
-JACKPOT found a quarter in the bottom!
-My house keys
-A travel size bottle of lotion from Bath and Body Works
-3 lip glosses
-4 Chap sticks, what can I say I like options!
-A pair of earrings I thought I lost!
-3 peppermints
-2 Lens cleaner wipes
-2 AA Batteries, I have no idea why!?
-5 Hair ties, again with the long hair!
-My brothers SD card, again I have no idea!
-My flash drive with all my picture on it
-A pen light, I stole it from Brad! hehe
-A digital photo key chain Brad got me for Christmas
-These tiny little bolts that go to my alternator pulley for my car, I've almost lost them like 3 times, and when I just pulled them out I almost threw them away! That would be BAD!
-And the most favorite thing I carry in my purse is a sterling silver frog, about the size of a pea, he was a gift from my Mom or my cousin one time when I was in the hospital, he is said to be carried at all times to bring good luck. I don't know if he's from my cousin or my Mom because they both got me one and I carried them both until I lost one. I do not switch purses without my good luck frog!

So there you have it my "important" things I carry. I only use a medium size purse, imagine the possibilities if I carried a large one!

Saturday, February 11, 2012

Day 10 of 30 Day Blog challenge

A picture of your favorite place to eat.

Okay so this is a picture of Colton from a couple years ago making homemade lemonaid. But it's in my Mom's kitchen which is my favorite place to eat. Favorite meal? Spaghetti

Thursday, February 9, 2012

Day 9 of 30 Day Blog challenge

A photo of the item you last purchased.

Engine cleaner and degreaser

I am a gearhead, motorhead, grease monkey and I love my '69 Chevelle. She is currently in pieces at the body shop getting a full frame and body restoration with shiny new paint. My dad and I had to pull the motor out of her, again, for the work. So I am taking it and power washing it tomorrow and I needed some degreaser to help with the process. Once it's all cleaned I will re-paint the block and other parts that go on the motor, put it back together and put it on the car frame. That way my body guy can put the body over the frame and motor with no worries of messing up the new paint job. This post would have been about toilet paper had I not forgotten to buy it, I think that would have made a good blog! LOL

Wednesday, February 8, 2012

Fianlly Answers to my constent fatigue!!!

I'm not sure who knows what I have been dealing with over the course of a year. But in a nut shell I had a lot of exacerbation's and have had a lot of sleepiness during the day, needing naps a lot! I have been searching for answers and after several night sleep studies and one day time nap study I finally have answers.

My doctor diagnosed me as Narcoleptic without Cataplexy, I don't have the spells that are called cataplexy where I just seemingly fall asleep with no warning. Mine is classified more of excessive sleepiness.During my daytime sleep study I fell into REM sleep within 5 minutes at every nap time, actually the longest it took me was 4 minutes 45 seconds! The sleep study started at 10am I napped for the 15 minutes (the max they allow, it's how they test) and then every 2 hours after for 5 times did it again. I had a total of 5, 15 minute naps every 2 hours. If you read the definition it takes a person with normal sleep patterns a hour or so to reach REM sleep. It is not that I don't get enough sleep during the night, I do. My brain just tells my body that I need sleep all the time, it's a protein malfunction. It is completely un-CF related, although in the definition is does say it can be caused by a virus during brain development, maybe I had one when mine was developing, it's very possible. I am starting a stimulant pill I will take 2 times a day. The doctor said I should see results within a couple days. And that with my sleep disorder being treated he is optimistic that my overall health will improve, like my PFT's and maybe some weight gain. I have had this feeling something has been wrong for a long time and I would only get so far with doctors. It started in high school, they tested my iron and that was low fixed that and it helped, and then when I brought it up again they blamed hypoxia (lack of O2) and restless leg syndrome, both treated and I had improvement. But it was never enough I have always been excessively tired. Recently some have told me it was the progression of my CF, I had a rough year with my baseline dropping about 10%, I refused to believe it was progression. I am SO VERY THANKFUL TO GOD for giving me my CF doctor who believed in me and didn't dismiss my complaints, and who also happens to be not only a CF pulmonologist but a specialist in sleep disorders as well. I almost cried today and I wanted to hug him, I am just so relieved to have an answer and be vindicated. I am very hopeful and so is Dr. Fitch that the med will help me and I can get some sort of normalcy in my life that is not revolved around whether I need to sleep or if I have had enough sleep. Let me be clear I'm not happy I have this, I don't think anyone thinks I am, but since I do have it I'm just happy to finally be treated :)
In closing I just want to say follow your instincts, and don't back down because a doctor tells you it's nothing, don't leave any stones un-turned! I have suffered a long time and although I'm happy to have answers now, I just wish it wouldn't have taken over 10 years, I believe my path in life may have been different had I been treated sooner. I think of all the things I have missed because of my constant fatigue, that makes me sad, especially things that effected Colton. He begs me every afternoon to not fall asleep, and because I have no control over it I do. I hope now I can spend afternoons with him and have quality son/mom time where I'm not half with it.

Here is the definition from Wikipedia of Narcolepsy

Narcolepsy is a chronic sleep disorder, or dyssomnia, characterized by excessive sleepiness and sleep attacks at inappropriate times, such as while at work. People with narcolepsy often experience disturbed nocturnal sleep and an abnormal daytime sleep pattern, which often is confused with insomnia. Narcoleptics, when falling asleep, generally experience the REM stage of sleep within 5 minutes; whereas most people do not experience REM sleep until an hour or so later.[1]

Another one of the many problems that some narcoleptics experience is cataplexy, a sudden muscular weakness brought on by strong emotions (though many people experience cataplexy without having an emotional trigger).[2] It often manifests as muscular weaknesses ranging from a barely perceptible slackening of the facial muscles to the dropping of the jaw or head, weakness at the knees, or a total collapse. Usually speech is slurred and vision is impaired (double vision, inability to focus), but hearing and awareness remain normal. In some rare cases, an individual's body becomes paralyzed and muscles become stiff. Some narcolepsy affected persons also experience heightened senses of taste and smell.

Narcolepsy is a neurological sleep disorder. It is not caused by mental illness or psychological problems. It is most likely affected by a number of genetic mutations and abnormalities that affect specific biologic factors in the brain, combined with an environmental trigger during the brain's development, such as a virus.[3]

The term narcolepsy derives from the French word narcolepsie created by the French physician Jean-Baptiste-Édouard Gélineau by combining the Greek νάρκη (narkē, "numbness" or "stupor"),[4][5] and λῆψις (lepsis), "attack" or "seizure".[6]

Tuesday, February 7, 2012

Liebster Award

Liebster Award

I was honored this morning to learn that my cyber cyster over at My Life as Livingston http://adamandjennylivingston.blogspot.com/2012/02/liebster-award.html chose me for the Liebster Blog Award. Jenny and I are Mom's fighting CF, we have become close friends via blog and facebook. Our lives seem to parallel each other quite often with our illness, being in the hospital at the same time and dealing with what this disease happens to throw at us both ironically at the same time. We share many of the same interest and find ourselves continually shocked, but not really, at the things we have in common. We both have no doubt that if we lived close to each other we would be the best of friends and most likely inseparable :)

Liebster is a German word that literally translates to "favorite", "dearest" or "beloved". By one blogger giving it to another, they are essentially saying, your blog is a favorite of mine. I think it's great that I have been awarded this. I blog mostly to get things off my mind, it's like a journal to me. I find myself surprised people want to read it or find it interesting, but there is a few that do I guess.

The rules of the Liebster Blog Award are:
1) Acknowledge the blogger who gave the award by linking back to them
2) Give this award to 5 other bloggers (who have fewer than 200 readers), and let them know through a comment on their blog
3) Post the award on your blog
4) Best of all - bask in the glory, have fun and share the love!
My link tool has not been working or I can't make it work right, so I am just going to post their links.

The Breathing Room- Krista is a mom of 2 little girls Ayla who has CF and 2 month old Autumn Faith who by the grace of God does not have CF. Krista blogs about her life as a mom of a CF'er and their struggles, her faith and life in general. I enjoy reading her writings I think because I can relate as a mom and someone with CF. http://thebreathingroomcf.blogspot.com/

Salty Superstar- Salty Superstar has a great way of writing in a matter of fact way, I love reading her personal stories that have affected her outlook and changes in her life. I have read as she struggled with the changes in her CF, and not wanting to be defeated, I relate to her in those struggles. http://cfsuperstar.blogspot.com/

JAMIEBUG CF CEPACIA LUNG TRANSPLANT- My fellow Jamie had a lung transplant 4 years ago after almost dying from CF. I was attracted to her blog first off because of her honesty about the end stages of her CF before her transplant. I had never heard someone talk about what it was really like, and I wanted to know. We also share a love of horse's and particularly palominos. http://jamiebug.blogspot.com/

Inhaling Hope- Inhaling Hope is a 27 year old CF fighter. She also happens to be expecting her first baby this summer. I found her on Cystic Life looking for information about other CF moms as she was taking the journey to become a mom. I wanted to share any info I could with her about my experience. I enjoy reading her writing about her pregnancy. http://hopefulwithcf.blogspot.com/

Eleanor's Life- Eleanor is a 3 year old with CF, her mom writes the blog about Eleanor. She just got a baby brother Thomas who does not have CF. I enjoy reading her moms writings about the way Eleanor takes on the world and seems to love every minute of it. http://eleanorguilford.blogspot.com/

Monday, February 6, 2012

Day 8 of 30 Day Blog challenge

A song that fits my mood.

I'm not sure if it fits my mood, but it's been stuck in my head. I don't usually care for most country music, but I have been into a few songs lately.

Blake Shelton - God Gave Me You

Sunday, February 5, 2012

Day 7 of 30 Day Blog challenge

Your dream wedding.

My Grandma once told me "You have to kiss a lot of frogs to find your Prince". I don't think that was completely true for me, but I did kiss a few frogs before my Prince came along. They always say it's when you least expect it, and that was true for Brad and I. I don't want to make this super long so long story short I planned my wedding in about 3 1/2 months, you can read about Brad and mines story in a previous blog, I tried to link it but it wouldn't work. I had to make decisions without second guessing anything purely because I had no time for second guessing. This I think made me less stressed and focused more on the Marriage then the wedding. I never had a huge dream of what my wedding would be like, and quite honestly I think it's because I never believed I would live to be old enough to get married. Not to say I didn't want to as a little girl or fantasize about being the girl in the white dress, I just didn't plan it out in my head. My wedding was beautiful and it was everything I wanted it to be. My Dad asked me when we were doing our Dad daughter dance "Is it everything you dreamed of?" and my response was "Everything and more." It wasn't about the dress, the cake, and the ring. To me it was about making the commitment to spend the rest of my life with Brad. I mean my dress and my ring was amazing! But I truly didn't focus on those things. My dad wanted to send us off to Las Vegas to get married, and I was tempted, but ultimately I wanted my family there to celebrate with us. But Brad and I have plans to renew our vows in Las Vegas for our 10 year anniversary, and let me tell you I have dreams about that one!

I enclosed the songs I danced to with Brad and my Dad.

Tracy Byrd - The Keeper Of The Stars

Gary Allan - Tough Little Boys

Saturday, February 4, 2012

Day 6 of 30 Day Blog challenge

A photo of an animal you'd love to keep as a pet.

I can't have cats, I'm allergic, but I wish I could.

I'm posting the list here, in case any of you want to join. You can jump in at any point; the posts don't have to coincide with the day of the month or anything like that.


Day 1 - Your Favorite Song
Day 2 - Your Favorite Movie
Day 3 - Your idea of the perfect first date
Day 4 - Your favorite photograph of your best friend(s)
Day 5 - Talk about your pets
Day 6 - A photo of an animal you'd love to keep as a pet
Day 7 - Your dream wedding
Day 8 - A song to match your mood
Day 9 - A photo of the item you last purchased
Day 10 - A photo of your favorite place to eat
Day 11 - What's in your make-up bag/purse
Day 12 - Your current relationship status
Day 13 - A few of your favorite quotes, mottos, or versus
Day 14 - TV show (or shows) you're currently addicted to
Day 15 - Something you don't leave the house without
Day 16 - Describe a passion you have
Day 17 - How you hope your future will be like
Day 18 - Five things that irritate you
Day 19 - Your reflection in the mirror
Day 20 - The meaning behind your blog name
Day 21 - A photo of something that makes you happy
Day 22 - A letter to someone who has hurt or OR made you happy recently
Day 23 - 15 Facts about you
Day 24 - A photo of something that means a lot to you
Day 25 - 5 of your favorite movies/books
Day 26 - A photo of somewhere you want to go
Day 27 - What kind of person attracts you?
Day 28 - In this past month, what have you learned?
Day 29 - Something you could never get tired of doing
Day 30 - A photo of yourself plus 3 good things that have happened within the last 30 days

Wednesday, February 1, 2012

Day 5 of 30 Day Blog challenge

Talk about my pets.

I have 2 doggies which I mentioned in the last post and included a picture of one. Colton also has a goldfish, which I don't really consider much of a pet, and were only on about the 10 fish now, lol!

Our oldest dog child Casper is a 7 year old Lab mix, we got him when he was 8 weeks old. I had Dog when Brad and I meet (she passed away in Sept 2009), Brad wanted a dog of his own and we thought it would be nice for him to grow up with Colton, he was only 5 months old when we got Casper. So Brad went to his friends cousins where she had 2 white lab mix puppies, Brad took the little one (because I told him to choose the littlest, it's something my dad had always made me do) and our friends took the other larger male white lab. I'm not sure what he is mixed with but he's yellow lab, but he's not the typical yellow lab color, he's much lighter. When he was a puppy he was a white ball of fur, hence the name Casper, you know Casper the friendly white ghost. I'm glad I had Brad pick him because his brother Jordan our friends dog, is NAUGHTY! So Casper was stubborn like a lot of Labs, wanted to run off all the time, I couldn't keep track of him and the Colton who was a baby still at the same time. Unfortunately Casper ended up being chained up a lot which I hated, he now has a radio shock collar knows his boundary and doesn't cross it, he can come in and out when he likes and I like it that way too. I will admit I disliked him very much when he was young a naughty, but he's gotten older and better behaved and I love him very much now. He cuddles with me every morning, he's mama's baby.

Diesel is our 3 year old English Mastiff we got Diesel when he was 4 months old. Diesel has more names then most, we call him D, Des, Dessers, Drooly face, big boy, and the list goes on he just came into these names as we got to know him, he respond to all of them too. He was my clearance puppy, Brad works with a guy who breeds Mastiff's and I had been wanting one for years. Well he told Brad about this lady in Grand Rapids that had one male fawn (tan and black face) left and she was selling them for $200.00 these dogs usually go for between $800 and $1000, so I called her and said I'll pick him up in the morning! Boy was I glad I did, he was living in a small house in the city with a tiny back yard, they had 3 grown mastiffs, a akita dog, a bunch of Chihuahua's and maybe 6 cats! It was not a nice place, you could tell they were breeding dogs for money only and not for the love of the dog, not good breeders at all! I had rescued him, their other Mastiff was gonna have another litter anyday and when that litter came he was set to go to the shelter. And the smell was horrendous, he smelled really bad too, glad I brought a blanket for him to lay on. He was a great puppy right from the beginning, slept on my lap the whole way home, it's like he knew he was gonna have a good life. We stopped at the pet food store to get some puppy food for him, we put the bag in the back of the explorer and he was back there too and started pawing at the bag and had his nose glued to it! It was so cute and funny, but yet I knew it was because food was scarce and he was hungry. He fit in great with the other dogs and potty trained super fast, he truly is a great dog. He has cost me a lot of dough though! Had to have his knee replaced at only 1 year old, which because he's a large breed he had to go to a expensive animal hospital, he also has ear and skin issues! I always joke it's a good thing he was on clearance, cause he's cost me a fortune! But I love him dearly, my house would be lonely and dull without my drooly face gentle giant.

I miss my baby girl Dog so much, I think of her still almost daily, and the thought of her still bring tears to my eyes. She was one in a million. She was a Lab/Saint Bernard mix and I featured her life with us on my blog shortly after I lost her. She died at almost 7 years old. I can't talk about my pets without including her.