Wish I may wish I might first star I see tonight.....

Coming home from a family Christmas party Sunday, this is the conversation between me and Colton.

Colton- Mom I see the first star! What's the song to make a wish?

Me- Star light, star bright, The first star I see tonight; I wish I may, I wish I might, have the wish I wish tonight.

Colton- Star light, star bright, The first star I see tonight; I wish I may, I wish I might, have the wish I wish tonight, I wish they could find a cure for Cystic Fibrosis.

Me- You know you should wish for something for yourself sometimes.

Colton- Nope I will always wish for a cure.

Me- That's really nice buddy, thank you.

Colton- Your welcome, I love you Mom.


I love you too buddy!

Why I Fight...Blogger Challenge

Why I Fight for a Cure for Cystic Fibrosis...

To live for Colton, my 7 year old son. That is the very first thing that comes to my mind when people ask. And then there are the other reasons that come to mind immediately after that. My husband, no one signs on to be a widower. My Mom and Dad no parent can imagine outliving their child. My Brother, he's one of my best friend's. My Grandma's, they once thought that they would outlive their grand daughter. For everyone in my family immediate, distant, and friends whether they are my best closest friends or the friends I have on facebook that I've never meet. You could say that I fight because I almost think it's expected of me, I mean what else do you do when faced with adversity. This is my life, I know no different, I have no idea what it's like to NOT fight for my life. And to be completely honest I wouldn't have it any other way, true I would love a cure and be "normal" or "healthy" for obvious reasons. But I almost guarantee I have a better appreciation for life then the average person, and appreciate the little things with more gusto. To me this is easy, when I think of the awful things in life me fighting CF is not one of them (most the time). The awful things is my Grandma losing her Son and Husband within 2 months of each other, a friend I went to school with and her 3 year old son dying in a horrific car crash leaving her 5 year old daughter motherless, and Scot and Mindy Christenson losing and having to bury their baby boy at just days old. Those things are awful, if this is the only burden I carry compared to some other awful things in life I can more then handle it. Then there is for all the other CF'ers out there, that my life has in some how helped with fund raising and research enough that soon a baby born with CF will be nothing, and those of us living with it will have our progression stopped in it's tracks so we can live our lives out long beyond what was expected for us. Which for those who don't know, my parents were told I would not live past elementary school, I have a diploma, I would never be old enough to marry, I have been married for 8 years, I could never have children, my son is the light of my life! And it comes full circle to why I fight.

Please take a look at this video that was put together by Emily's family and friends.

Emily's Entourage Video

Then take the challenge below!

Here are your official rules for participation:
1) View Emily's amazing video here, then consider making a donation of your own or "liking" her page on FB (neither is required, but both are encouraged!).

2) Create your own blog post, FB status update, or other form of social networking tool (letter, email, whatever). In the body of the message, place a small paragraph of why YOU fight for a cure for cystic fibrosis and why this cause matters to YOU. This can be your CF story, your wish for the holidays, your version of community -- whatever.

3) Link to Emily's Entourage Website and encourage your own readers to take up the challenge.

4) Comment on Piper's blog amatteroflifeandbreath.blogspot.com (it won't link for me for some reason) with a link to your blog a message about how you shared this vision for an automatic entry into a drawing for a very special CF/transplant-awareness prize package, including gifts from iheartguts.com, apparel, and other fun goodies!

5) Re-post these rules on your own page.

A day in my life with CF!

So my cousin's girlfriend has an assignment to do for her photography class. She asked me if she could document with photo's a day with me and everything I do with CF. I of course said absolutely! So I have been being photographed from the beginning of this morning from when I started my vest this morning, doing my morning IV med, sterilizing nebulizers, making and drinking my high calorie shake, laying all the pills out I take in a day, which is 47 all together including all my enzymes. We also got to document when my nurse came and changed my dressing. It was a good day to document CF. I was really excited for her to do this and honored for her to chose me and my story. She already showed me the ones she took while she was here and it was really neat to see myself from that perspective doing all my treatments and stuff, seeing what others see. I can't wait to have it put in a video slide show to use as a fundraising/awareness raising tool. I will share it when I get it!

A blog NOT about CF!

Me and my "baby"!


I blog a lot about my CF, it's just usually what's going in my life, and when it's not I'm too busy enjoying the good parts of my life! Well since I was in and cleaned out in July I have been feeling great and living and enjoying life.


My cousin and I lining up

One of the great joys in my life is of course Colton and I do everything with this kid and he does everything with me! But one of the other great joys in my life is my '69 Chevelle, it's like a second child to me! I have been working on it on and off during the summer slowly getting the parts that I needed for it. And although I do a lot of the mechanical work on it myself, I usual need help from my brother and my Dad, and they have been busy all summer, and my Dad works out of state and only home on weekends, so I really don't like taking all his time on his weekends. But he managed to work on it for a couple weekends in a row and got it all read for me to take to the track for open test and tune. I took it to the drag strip for the first time since I put my new motor in it (I had taken it the first year I bought it with the old motor). My best time for that day was 13.3 seconds in a 1/4 mile going 101mph, that is pretty good! I had a blast I LOVE drag racing! I love doing it now and I have always loved watching it. So we had plans for changing some stuff up and coming back in 2 weeks, that's kinda the point, and why it's called test and tune, you test the car out see what it's doing and tune it and change what you need to. We changed the fuel lines, carburetor, and fuel pump. I was having a problem of getting fuel to my engine and then it would die out losing my speed and better time. So after all the changes my Dad figured when I went back I could do at least 12.5. I never got 12.5 but I did get 12.7 at 107mph! My cousin has a race car so I invited him to come to test and tune with us and just run for fun, and my brothers girlfriend, Sarah, has a 2010 Camaro, and I also invited her to run her's for fun, she loves cars and drag racing too, I really more less demanded she come and run, because I knew how much she would love it after she got over the nerves and did the first time, and she did! Now she want's a "real" race car! I love my car and I love racing it! She's going in the body shop this winter, I'm so excited, she's gonna be as pretty as she sounds! I have only tested and tuned her, but next year I hope to enter an actual race!


Sarah and I lining up


One of my other loves has always been horse's I have loved horse's since I can remember. I had a Palomino Quarter-horse I showed in 4H when I was a young girl, he died when I was 17, I was devastated, but I was a teenager and had better things to do. I got another horse a Buckskin when I was 19 or 20, he was not trained well so I really didn't get to ride him much, and then I got pregnant and married and had little time to work with him. I had him for 3 years I believe, then when my son was about 1 we had to move and I had to sell him because we didn't have a place for him at our new home. At our old place we lived next to some great couple that had a horse farm and I would ride with the wife every once in a while. Well I rode with her the week before we moved, that was over 6 years ago, she told me to come and ride but I just never have. I miss my horse's and riding very much, and especially in the spring and fall because that's when I did a lot of riding. Well my husband works with and car pools with a very sweet lady, Judy, that has horse's, she's been telling him for a long time for me to come ride with her. Finally yesterday I had a very intense urge to go riding, for the past week it's been between 70's and 80's here in Michigan which is really crazy! So being so warm and beautiful I told Brad to call her I wanted to go riding! So he did, and she said send her over! So for the first time in over 6 years I got to go horseback riding, oh how I had missed the view between a horse's ears! It was amazing I got to ride a mare named Storie and she was a dream to ride, she knew what she was doing, I rode with Judy and her step daughter Maria. Storie was a leader because she has a faster walk and trot then the other 2 horse's. Horse's are a lot of work and although I long to have them again I can no longer handle the work they come with and I can't justifie making Brad do that work, because he has his own passions he enjoys, that he would rather spend his time on. I do not in tend on waiting another 6 years! I hope to make this happen a little more often. Although it's gonna be getting cold I'm confident I can get a couple more rides in this year.

Compliance, Judgement & Progression

I'm taking this challenge that was presented through a fellow CF blogger Confessions of a Cyster
http://www.blogger.com/img/blank.gif The challenge is as follows.
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.

This is so relative to me right now as I have been struggling to "manage" or "control" my CF. When the truth is I can't manage it or control it. I wish I could. I believe CF is maintained sometimes by how compliant we are, but I also believe that in some cases it doesn't matter how well you have taken care of your self this disease will take over for periods of time. My parents made me very compliant with my treatments, but they also let me skip treatments sometimes to live my life, because was the fight worth fighting for me to just be alive? No I was a child, I needed to live and enjoy the things kids enjoy like sleep overs, and camping. So as I grew into a teenager I stayed relatively compliant and have through my adulthood. Having become completely compliant in the past year, trying to re-gain some lost health.

I was recently criticized on facebook for supposedly being in denial about my disease progression, because I don't believe that what I have been going through for the past few months is, I truly believe there is an underlying reason. And I found myself defending MY illness to a fellow CFer. In his eyes I was in denial and needed to except the fact that my disease was progressing, because he had been through it and that's how it happen to him. Being in that position was weird, I was feeling like how do you judge MY CF story and MY progression based on your experience when we all know everyone with CF is so different. I hate the judging in some of the CF community! The your sick because you don't take care of yourself, or your CF isn't bad and that's why your healthy. I love to hear EVERYONE'S story's, whether they are in end stages or as healthy as a "regular" person. We all have our own story's, our own health stories, our own ways of dealing with OUR disease.

Disease progression is scary. I get scared every time I get admitted to the hospital, but I also don't let it run my life or overrun my thoughts. I do what I need to do to get past it and get home and get healthy. Do I cry when my son gets sad because he misses mommy, yes. That's why when I am home and healthy or feeling well I make every moment I can remembered and special for us. My worst fear when he was a baby was that I wouldn't live long enough for him to remember me. Did I believe I was dying anytime soon, no, but I still had those thoughts, I think because growing up I was told I wouldn't live as long as I have. As he's gotten older I know he will remember, and what I want him to remember is the times I was home and healthy, and our family vacations, and all the good stuff. Not the nights he cry's because I'm in the hospital. Living my life to the best of my ability is all I can do for him and for me. And if I miss a treatment every once in a while because we are out having fun well then so be it, I'd rather him remember that moment we were having then remember that we had to stop for a treatment. Some would argue that missing a treatment could take me away sooner, and would defeat the purpose of enjoying my days with him. To them I say, being alive isn't always living.

Not sure if I followed the "rules" but I went where my heart felt.

CF Sucks!

For those of you who are my friends on facebook the first 2 updates are from there and you probably already know this information. But the last part is new.

7-21-11
After my bronc-scope yesterday I went home and was having pain all around my chest and back, I figured it was from coughing so much after the scope. They gave me ibuprofen before I left, I went home and went to bed. I woke up and all the pain had went away except in my chest on the left side. It was excruciating pain, I couldn't breath in good because it hurt so bad, so I had to take small shallow breaths, which made my O2 levels drop. By the time I got to the ER my temp was 103.1, my heart rate was 150 (normal range 60-100), and I don't know what my blood pressure was but that was high too, my O2 level was 88, my normal is around 95 and my white blood count was 30,000 twice the normal range. The speculation was that maybe my left lung had collapsed, fortunately it was not. Ultimately it was a combination of the bronc-scope irritating my lungs and already being on the verge of infection. So they have put me on 2 IV antibiotics and one inhaled anti-biotic. I am going to be here until they get the final results back from my scope, which could be a couples weeks at least. Today I feel better then last night, but I'm still having pain, that's mostly being controlled right now. My breathing and O2 levels are back to normal, as well as my blood pressure and heart rate. They did the echo cardiogram this morning to check for pulmonary hypertension, the results from that will be in later this afternoon. I'm also having a port placed either later today or tomorrow, which is a semi- permanent central line for IV meds, it takes the place of having PICC lines placed every time I come in. The veins in my arms are no longer able to handle PICC lines.

7-22-11
I was hoping I would have got my PORT placed today, but because my blood count is still high they won't place one because of risk of infection. They also have to have negative blood cultures for 48 hours, I had them done Wed night so they won't be done until tonight and they can't do the PORT until Monday morning. Last night my normal IV went bad, it was the second one I had went through. And after 3 different people tried in 3 different places, they could not get a new one started, so I missed my IV antibiotics last night and this morning, only getting the inhaled one, which today the doctor took me off of one of the IV antibiotics anyways. So I'm on 1 IV med and 1 inhaled for now until they get my final cultures back from the Bronc. So because I can't go until Monday without my meds, they had to place (or try to) a PICC line. It was the worst experience I have had with getting a PICC placed! It ended up only being a mid-line, which only goes up to my shoulder. But it hurt so bad, I don't think the doctor gave me enough lidocaine at the site because I could feel most of the poking and prodding he was doing. I was in tears by the end and my arm hurt so bad I couldn't move it and is still is sore, 2 hours later. So the plan now is for my PORT to be placed Monday morning as long as my blood cultures come back clean.

7-24-11
I am feeling much better then I did on Wednesday, Thursday, or Friday. I have no pain in my chest anymore, and all of my vitals are back to normal. Other then I'm still on O2 most the time, only off for short period of times. Normal O2 saturation's should be between 90 and 100, 90 is on the low side and when I'm off the O2 mine stay right at about 90 or 91, my normal is between 94-96. I'm scheduled to get my PORT in the morning so can't have any thing to eat or drink after midnight tonight. The plan is still for me to stay here until the results come back from my washes the doctor took during my bronc, not sure how long that will be yet.

Update on Clinic

I went to clinic last Wednesday, just haven't had a chance to post about it until now. The results were nothing good. My PFT's were down again from 35% to 32%, which is not a lot but I have been steadily declining since April. We have 3 CF doctors in our office, 2 of which I have been seeing since I transitioned to this clinic back in '08, but the other one just came on a few months ago. This was my first visit with her, I like them all very much! I had some extensive cultures sent in when I was there in May, those so far are coming back normal, and by normal I mean only growing the bugs I normally grow. Although they test and grow these for 3 months, so the final report won't be until August. So still no clear reason as to my decline. Dr. Lehman wasn't comfortable doing nothing about the decline and fevers being back, but she didn't think it warranted an admission either. So the plan is oral anti-biotic (Leviquen)for 2 weeks, and return for repeat appointment. She wanted to give a few things a chance to work, 1 being the anti-biotic, 2 my recent increase in exercise and she asked me to add more to it making it 5 days a week, and 3 the recent fix in the house. So I go back next Wednesday, if my numbers are the same I think she will admit me and then they want to do a bronc-scope, where they put a camera down in my lungs and take sample's from deep down in. This is pretty much the last test that could give me any sort of answer as to why the decline, if it shows nothing unusual then I think I will be at a place where I have to accept it as disease progression. It's a hard pill to swallow, and I am not willing to accept that is true until all options are exhausted. I have always and always will do everything in my power to fight this.