In a previous blog I spoke of CF Advances and my thoughts on it. In that post I stated that I didn't believe there would be a cure found in my lifetime. I still believe this and stated I would explain at another time, I think I'm ready to try and explain.
I want to go into this blog by stating that I completely believe and have faith in the CF Foundation and they do everything in their power for CF patients, new meds and striving for a cure. There is very much evidence to prove this statement, if you do some research you will find that the CF foundation does exactly what they say they do, and the money that is raised through and given to them absolutely goes to new research. I am not a pessimistic person. I am positive almost all the time and am highly annoyed by negative people, whiners, and complainers in general. I am also a realist. I always have faith and give a great deal of my troubles to God. But I also believe in the facts in society.
Disease is big business. Pharmaceutical companies make A LOT of money from drugs to treat disease. Let me give you an example.
Vertex executives said Kalydeco would cost $294,000 for a year's supply, placing it among the most expensive prescription drugs sold in the U.S. Specialty drugmakers are known to charge $300,000 or more for drugs that treat very small groups of patients.
"The drug is priced for the value it will deliver to this very small group of patients," Vertex Executive Vice President Nancy Wysenski told analysts.
Wysenski said Vertex would provide the medicine for free to people with no insurance and household income of $150,000 or less. The company will also cover 30 percent of copay costs for select patients who have insurance.
$294,000 a year, $24,500 a month, $6,125 a week, and $875 a day. Of course as stated they will help families without insurance, and with co-pays. But lets do some math, math was always my weakest subject so forgive me if I am wrong. Kalydeco helps about 5% of the CF population approximately 1,500 persons. 1,500X $294,000=$441,000,000. The reason the drug is so expensive? It only helps a very small group of people, meaning less is being manufactured which cost more. Which ever way you cut it that is a very large amount of money. The CF foundation works in collaboration with Vertex Pharmaceuticals and other companies to do the research and production of these drugs. They do this to expand greatly on the resources pharmaceutical companies have to labs and chemical compounds, improving there chance of getting these drugs developed. Vertex and other companies also invest in the drug research, giving them profitability. Now honestly I have no idea how much money they make from Kalydeco, and I find it somewhat comforting that they invest back into the CF Foundation. The CF foundation also funds programs for patient support and care.
This is only one example of a drug, a ground breaking drug in the CF community. But If you think of all the other diseases and drugs the treat them, there is a lot of money to be made. That is why I don't think there will be cure for CF or a lot of other diseases. What I do believe is at some point there may be a daily drug that will significantly slow or stop CF. That is like a cure, yes, but a cure to me would be something as simple a vaccine, or a simple procedure to fix the defect. Would I be happy with having to take a pill daily and stay healthy forever ABSOLUTELY! Like many do for many diseases. The bottom line to me is it's a business. The CF community always stays at about 30,000 because people are always dying and always being diagnosed. We are never ending money maker for these companies. I don't think they do this out of malice, and I believe their is many in the business to cure disease. There's just a lot of bureaucracy that goes along with it. Someone once told me "We can put a man on the moon, but we can't cure CF?!"
I really hope this doesn't come off as me being pessimistic or from a place of anger. I am not angry about it or nor do I dwell on it, it's just my honest opinion. I will continue to raise awareness and money for the Cystic Fibrosis Foundation and donate to other great causes working towards treatments for Cancer, Huntington's Disease, and many more. I will take as many drugs a day it takes to save/extend my life and raising and giving money to CF Foundation will lead to those drugs. Because although we may never have answers to these diseases there is always medical advances, and that is the next best thing.
Please visit www.cff.org and look through some of the info they have, you can read all their reports and view the drug pipeline showing which drugs are where in trials.
Wednesday, November 14, 2012
Monday, November 12, 2012
I love my little life!!
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| My Brother, myself, and Sarah his girlfriend. |
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| Me, Grandma Mable, and Colton |
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| Horseback riding |
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| Out in front of the Bed and Breakfast |
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| Downtown Holland |
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| Frankfurt Pickard Purchase |
Wednesday, October 31, 2012
I made it!
Today is my birthday, I am 30! An age I honestly never thought I would reach until recently. As most of us with CF born in that time period, our parents were told we would be lucky if we made it to grade school. But my Mom and Dad never treated me any different, and my Mom says that she never thought I was going to die at a young age. I was always told the truth about CF, always knew the age median of my estimated life expectancy. It never really scared me, but I always felt like I was chasing my own death. I would reach an age and the life expectancy estimate would increase, which is awesome! I want to make it clear that my parents or anyone ever made me feel like I was going to die, in fact the exact opposite. It's just the inner part of me that has always felt/thought like this. A little less then 8 years ago I lost a friend to CF she was 31 and has 2 daughters that were quite young at the time. I was a newly married, new mom. This loss hit me hard, I was terrified I would leave my son at to young of an age where he wouldn't remember me. I remember telling my best friend "I will be happy if I make it to 30, at least then Colton will be old enough to remember me." I am beyond thrilled I have reached this milestone. I have done so many things my parents were told I would never do. I graduated high school, I married, I have a son, and I have even traveled some. I have lived my life to the fullest and experienced amazing things! I lived to see my 30th birthday. I am over joyed and now that I have made it this far I will not except anything less then at least another 30 years. I also have a heavy heart. The CF community lost 5 lives on Friday to this terrible disease! Two of which were in their 40's which is amazing, but not enough, it's sad that 40 is an amazing age to reach, when in reality it should be the start of a new era in someones life! Sadly the one beautiful young lady was just 22 with her whole life ahead of her. With countless others fighting for their lives. I love my birthday, I always have. It's Halloween which has always been so much fun for a birthday. I cherish my birthdays dearly. But this monumental birthday for me has been by far the most cherished, and mostly because I never thought I would see this day come. Do me a favor and cherish your birthdays too, don't complain about getting another year older, rejoice in the fact that God has given you another year to live on this earth. We always dress up and go out to a costume contest. This year I decided to be a Sugar Skull which is from the Mexican holiday Day of the Dead. It really was very symbolic for me.
Wednesday, September 19, 2012
Lung Transplant in my future??
There was a time in my life when I was maybe 16 or 17 that I had decided I would never get a lung transplant. I had read stories of them in patients with CF and at that time it seemed like a lot of pain, suffering, and difficulty for a chance to maybe live a few years longer. It didn't seem worth it to me at the time.
Asking myself this question 13 years later and the answer is yes I will get one if my health comes to that point, I am able to be listed and most of all actually get a donor. A lot has changed over the course of those 13 years, not only with me, but in the medical world as well. What you might ask made me change my mind? And no it is not a maturity thing, as a lot of CF'ers I was very mature for my age at that time. I thought way more about my future then most, and didn't think I even had 10 years to live. First and for most though I am a Mom. Being a Mom brings your mind to a whole new setting. That setting for me is do everything in my power to stay alive to be here for my son. I am also a wife and I have the most amazing, and loving husband and cannot give up a chance to spend more of my life with him. I am a Daughter, Sister, Grand Daughter, niece and cousin. It would be selfish of me to not take a chance to live, because I know how much they all love me and I love them. Medical advances are also a huge difference in change of mind. I have spoke with several CF lung transplant recipients and all have promising lives ahead of them because of the chance to live with new lungs. And I would be lying if I told you the idea of breathing with lungs of full capacity or near it was not exciting, or the possibility of running, biking, or hiking without getting short of breath. Heck I'd settle for not getting short of breath folding laundry!
You have to understand a little bit about lung transplant in CF. It is not a cure to CF, it's trading one demanding part of my disease off for another demanding regime, although it's worth the trade when it's successful. You have to be sick enough to need new lungs, but healthy enough to receive them. Which is a fine line to walk. I am "fairly" healthy right now, but that could change at anytime, one infection could tip me into transplant range. They most generally start to look at you for lung transplant when your lung function is in the low 30's and below, there are other factors they look at as well, but that is one of the main ones. Mine have been bouncing around in the 30's for about a year now. When you get to the point of being sick enough it's almost a "what have I got to lose" scenario. You run the risk of going into a transplant and not surviving, but you were facing death soon anyways. It's very hard to explain for me, especially because I'm just learning about it more in depth.
If I could stay where I am at now and live a long life I would be happy to do that, and I will continue to fight to stay and always improve upon where I'm at. But the ugly truth about this disease is I most likely won't stay in this state for a long life. That is why my CF doctor, Dr. Fitch (my hero) wanted me to have a consultation with a transplant clinic, so today I did. My CF clinic is in Grand Rapids MI at Spectrum Butterworth Hospital, they started doing heart transplants about 2 years ago and have been in the process of setting up a lung transplant program this year. They have all the doctors on staff, and are just waiting for their UNOS certificate to start doing lung transplants which they expect to receive in December or January. I had a consultation appointment today with Dr. Girgis to go over my history, and just explain the whole process. It is basically a meet and greet, I will see him every 3 months now along with Dr. Fitch my CF doctor, to establish a relationship and follow me. If I get to the point where they feel I need to be listed I will then start that process, which includes a lot of medical, physical, and psychological testing. They then gather all that info together and decide whether I would be a good candidate to be listed or not.
So is lung transplant in my future maybe. But only God knows his plans for me. But in the mean time there are over 70,000 on the active waiting list for organs, some of which are my friends, so become a donor please. https://services.sos.state.mi.us/OrganDonor/Registry.aspx this is the link for Michigan, if you live in another state just google how to become one in your state. It's easy and takes less then 5 minutes.
Asking myself this question 13 years later and the answer is yes I will get one if my health comes to that point, I am able to be listed and most of all actually get a donor. A lot has changed over the course of those 13 years, not only with me, but in the medical world as well. What you might ask made me change my mind? And no it is not a maturity thing, as a lot of CF'ers I was very mature for my age at that time. I thought way more about my future then most, and didn't think I even had 10 years to live. First and for most though I am a Mom. Being a Mom brings your mind to a whole new setting. That setting for me is do everything in my power to stay alive to be here for my son. I am also a wife and I have the most amazing, and loving husband and cannot give up a chance to spend more of my life with him. I am a Daughter, Sister, Grand Daughter, niece and cousin. It would be selfish of me to not take a chance to live, because I know how much they all love me and I love them. Medical advances are also a huge difference in change of mind. I have spoke with several CF lung transplant recipients and all have promising lives ahead of them because of the chance to live with new lungs. And I would be lying if I told you the idea of breathing with lungs of full capacity or near it was not exciting, or the possibility of running, biking, or hiking without getting short of breath. Heck I'd settle for not getting short of breath folding laundry!
You have to understand a little bit about lung transplant in CF. It is not a cure to CF, it's trading one demanding part of my disease off for another demanding regime, although it's worth the trade when it's successful. You have to be sick enough to need new lungs, but healthy enough to receive them. Which is a fine line to walk. I am "fairly" healthy right now, but that could change at anytime, one infection could tip me into transplant range. They most generally start to look at you for lung transplant when your lung function is in the low 30's and below, there are other factors they look at as well, but that is one of the main ones. Mine have been bouncing around in the 30's for about a year now. When you get to the point of being sick enough it's almost a "what have I got to lose" scenario. You run the risk of going into a transplant and not surviving, but you were facing death soon anyways. It's very hard to explain for me, especially because I'm just learning about it more in depth.
If I could stay where I am at now and live a long life I would be happy to do that, and I will continue to fight to stay and always improve upon where I'm at. But the ugly truth about this disease is I most likely won't stay in this state for a long life. That is why my CF doctor, Dr. Fitch (my hero) wanted me to have a consultation with a transplant clinic, so today I did. My CF clinic is in Grand Rapids MI at Spectrum Butterworth Hospital, they started doing heart transplants about 2 years ago and have been in the process of setting up a lung transplant program this year. They have all the doctors on staff, and are just waiting for their UNOS certificate to start doing lung transplants which they expect to receive in December or January. I had a consultation appointment today with Dr. Girgis to go over my history, and just explain the whole process. It is basically a meet and greet, I will see him every 3 months now along with Dr. Fitch my CF doctor, to establish a relationship and follow me. If I get to the point where they feel I need to be listed I will then start that process, which includes a lot of medical, physical, and psychological testing. They then gather all that info together and decide whether I would be a good candidate to be listed or not.
So is lung transplant in my future maybe. But only God knows his plans for me. But in the mean time there are over 70,000 on the active waiting list for organs, some of which are my friends, so become a donor please. https://services.sos.state.mi.us/OrganDonor/Registry.aspx this is the link for Michigan, if you live in another state just google how to become one in your state. It's easy and takes less then 5 minutes.
Friday, August 31, 2012
DIY Thirty One bag liner (my first DIY blog!)
So I like most every other woman in America am obsessed with Pinterest! I find myself re-pinning everything, wanting to learn to sew, bake, use power tools, and just be creative! I occasionally find something I think I can pull off. Well I found this one a while ago and it only lead to a picture no blog or instructions to go with only a short explanation in the caption. But it was pretty self explanatory anyways.
This is the picture from the pin
If you own a Thirty One Utility tote you know it doesn't stand on its own, it slouches down. In the original pin they had used a summer vinyl table cloth so it can be wiped off if needed. I couldn't find one I liked and figured a shower curtain would serve the same purpose, so today when I found a colorful zebra print shower curtain(my favorite) on clearance at Meijer I decided to go for it.
I first went to my Thirty One catalog to get the dimensions of the bag, I could have measured, but they already do and I'm not that accurate at measuring. I then went to the garage and used some card board box's from my car parts that luckily had not been recycled yet. I cut 3 pieces the size of the front back and bottom of the bag 11.75"H X 21.5"W which is the same size, and 2 pieces the size of the sides 11.75"H X 10"D. I brought the pieces in to do a fitting before I covered, I did end up having to trim them down even more to fit nicely.
Because the shower curtain I bought was kinda see through I had to paint the card board for a background color, I originally thought black spray paint would work good, but it didn't work very good and didn't set my pattern off very good either. So after looking through our paint collection I decided to use a lime green we had used in Colton's room a few years ago. Now had I used a table cloth or solid shower curtain I could have avoided this step, but it was on sale and I liked it.
So I painted all 5 pieces and let them dry, I could have done 2 coats but one was enough with the print on top to cover any imperfections. I then measured enough of my curtain to cover each piece and cut it up. Then I just used spray adhesive to glue the shower curtain to my card board pieces. I'm not that great at getting things to fold and cover tightly, but the curtain was kind of stretchy so it worked pretty good.
I love the way it turned out and the colors and patterns together! No more slouchy Large Utility Tote for me.
Sunday, July 15, 2012
But I don't want too.....(insert 5 year old whiny voice here)
The last time I was in the hospital was in November, it was pretty routine I had a sinus infection and didn't want it to get out of hand before the holidays. (I realize referring to spending weeks in the hospital as "routine" is kind of ridiculous, but that's my world) So anyways at that point in time it had been 4 months since I had been in, which was not bad considering my spring consisted of 2 stays within 2 months. Well I have now gone 8 months without being hospitalized, which is great, it's been a long time since I've gone that long between a stay. You get where this is going don't you?! Yup I think it's time to head in for some drugs. All the tale tell signs are there, having more day's of not feeling well,laundry not getting folded or taken care of, I moan at night in my sleep when I can't breathe good, Brad says that I do this almost always when I need to go in. It's hard to explain sometimes. Do I feel terrible? No. Do I feel great? No. Do I always let myself slowly feel worse until I realize I need it? Yes. This happens because with the way I feel it kind of happens slow so I adjust to it without realizing it's even happening. Then when I go in get meds and the works, I realize how bad I felt, because when I'm done I feel SO much better. Having a tight chest the last few nights, and having to put on my O2 the other night before going to bed (I only wear it when I sleep, unless I need it which is usually only when I'm at this point) just sitting is kinda the wake up call for me. I said to Brad tonight "I need to go in the hospital" his response "Your just now saying it out loud?" Yeah he knew, he knew I knew, but like the good hubby he is lets me do it on my own time. I don't hate going in the hospital, I know that sounds ridiculous. I hate it more now that it affects Colton and Brad, but growing up being there so much I am kinda use to it. But what I do HATE is going in during the summer! That's more time Colton is home, when I am his primary care giver it makes it hard to be away, not to mention I miss him (although I will admit the first couple days away are not to bad! Oh my gosh I'm a horrible mother, I'm suppose to miss my child every minute I'm away! Well sue me then because that's how I feel! lol). Colton had a hard time last year when I was in a lot, so I'm always worried about him. I talked to him tonight explaining I hadn't been feeling good (he can always tell too though) trying to let him down easy, and he says "well maybe you need to go in then" I said "yeah I probably will" he then said "well better for you to be gone for a little bit then forever". This kid is wise beyond his years, and continues to melt my heart and bring me to tears. Now I really do feel bad for enjoying my first few day's "away"! It's sometimes hard for me having to rely on my in laws and my parents to take care of him while Brad's at work. But he's always in good hands, by the way, I have amazing in laws! I'm looking at my calendar thinking of all the stuff I'm gonna miss, pouting like a baby, my favorite band Shinedown concert, just got my car back from restoration and had some car shows in mind to take it too. Brad being that great hubby again, says "Those things don't matter!" and he's right in the grand scheme of my health they don't matter. But I still hate missing things! I am the farthest thing away from a home body, I am social and love to keep busy, "running' the roads" as we call it. But we live in a very rural area with lots of small towns 5, 10, and 15 miles apart, in which during the summer there is a festival of some sort going on almost every weekend with lots of fun, free entertainment. So I miss out a couple weekends, but I don't want too!!!! (insert that whiny voice again)
Friday, July 6, 2012
All things Disney! Warning this is long :)
Tuesday, June 26, 2012
My Dream for CF..
Wow! Been too long since I blogged last! Proof I have a tendency to not finish things, the blogger challenge, I failed. Moving on..... Let's see I have been feeling great, we went to Disney in March, I'll post a blog about that soon I hope. I had clinic in May, PFT's were same, weight was same, still hoping to increase both by the end of the summer.
We had the annual Great Strides walk Cystic Fibrosis in Edmore that I coordinate. We did fantastic, raising over $12,000.00! I had some great awareness opportunities this year as well. Myself and some volunteers were featured in a couple news paper articles. My cousin's daughter nominated me for a Pay it Forward Person of the Week at our local FOX news station, so they did a story about me and the work I do for the Cystic Fibrosis Foundation. That lead to some other opportunities for fund raising and future events. A local EMT/firefighter had written a book called The ER loading dock and donates proceeds to different charities. After seeing my story on the news he contacted me and wanted to donate 2 months worth of his book proceeds to the Cystic Fibrosis Foundation! So make sure you go here and get your copy by August 17th! I also volunteered at a new CF walk location this year in about 30 miles north of me. A family I meet last year through the Edmore walk decided to coordinate their own walk in their home town, their son Parker has CF. That event was today and raised over $15,000.00! I'm pretty proud of our area, with 2 walks we have raised nearly $30,000.00 for CF research, that is simply fantastic! I was asked to share "My Dream" for CF, the CF foundation has a series of videos on their youtube page of different peoples dream for CF in the future. This is what I shared today. Hi, I'm Jamie Purchase, I am 29 and I have CF. I had many dreams as a child, I wanted to be a princess, a doctor, a figure skater, a model, a beauty queen and the list goes on and on. But what I dreamed of most was to not have CF or be defined by it. My dream is the same today. I dream of a day when CF is known not because it's a deadly genetic disease, but because it is no longer a deadly disease. I dream of the day I don't turn on my computer to find another friend has lost their battle against CF. My dream is a CURE!
I have lots of topics for blogs on my mind, and now that I have a laptop again I hope to post more regularly again :)
Monday, March 26, 2012
My Video 3/26/12 at OneTrueMedia.com
A few months again I posted a blog about my cousin doing a photo shoot with me in a day with CF. Well I finally got a video done with some of those photos and few of my own. I hope you enjoy it!
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 :)
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!
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
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.
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.
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
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*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!
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
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
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]
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
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
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
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.
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.
Tuesday, January 31, 2012
Day 4 of 30 Day Blog challenge
A picture of me and my best friend(s).
The first one is obviously my hubby.
The second one is my best girlfriend Chasta. I meet her after marring my hubby, he went to school with her and her hubby and they were long time friends. I'm so happy she came into my life, we were like long lost friends, we had an instant connection.
And last but not least is my puppy dog Diesel. Diesel is a 148 pound English Mastiff who thinks he's a 15 pound lap dog! I love him, and I love cuddling with him. You will find him and my other puppy dog Lab mix Casper (I couldn't find a picture of him on this computer) in bed with me every morning after Brad gets up. I love my dogs like my children.
The first one is obviously my hubby.
The second one is my best girlfriend Chasta. I meet her after marring my hubby, he went to school with her and her hubby and they were long time friends. I'm so happy she came into my life, we were like long lost friends, we had an instant connection.
And last but not least is my puppy dog Diesel. Diesel is a 148 pound English Mastiff who thinks he's a 15 pound lap dog! I love him, and I love cuddling with him. You will find him and my other puppy dog Lab mix Casper (I couldn't find a picture of him on this computer) in bed with me every morning after Brad gets up. I love my dogs like my children.
Sunday, January 29, 2012
Day 3 of 30 Day Blog challenge
My idea of the perfect date.
Well I have been married for 8 years now, and I can say that I have never had the idea of my perfect date with my husband. Not to say we haven't had good date nights, we have. When we started "dating" we never really had a first date. He just started coming and seeing me at work, we'd hang out at his parents house or mine (Yes we lived at home still and didn't even live together until 3 months after we were married), we would go out to movies or dinner and shop, but nothing extravagant. I think the fact that we didn't made it better because having fancy dates I think would set my expectations high, and I don't think Brad could have lived up to them for a long period of time.
So say I did have my perfect date. He would drive me to a ranch, no doubt in a hot muscle car (preferably a 1969 Chevelle), we would ride horses out into a beautiful meadow, have a picnic, make out madly (this date is of course with Chaning Tatum), take a nap on a blanket, make out some more and then head back to the ranch. Cruise in the hot muscle car the rest of the night, finding a beautiful spot to sit on the hood to star gaze and make out some more. He would take me home, and because I 'm a lady we would kiss goodnight and he would leave, with plans for a helicopter ride the next day to have lunch on top of a skyscraper.
See that's just too much for Brad to live up to. I think I watch to much of The Bachelor, and all the fantasy dates.
Well I have been married for 8 years now, and I can say that I have never had the idea of my perfect date with my husband. Not to say we haven't had good date nights, we have. When we started "dating" we never really had a first date. He just started coming and seeing me at work, we'd hang out at his parents house or mine (Yes we lived at home still and didn't even live together until 3 months after we were married), we would go out to movies or dinner and shop, but nothing extravagant. I think the fact that we didn't made it better because having fancy dates I think would set my expectations high, and I don't think Brad could have lived up to them for a long period of time.
So say I did have my perfect date. He would drive me to a ranch, no doubt in a hot muscle car (preferably a 1969 Chevelle), we would ride horses out into a beautiful meadow, have a picnic, make out madly (this date is of course with Chaning Tatum), take a nap on a blanket, make out some more and then head back to the ranch. Cruise in the hot muscle car the rest of the night, finding a beautiful spot to sit on the hood to star gaze and make out some more. He would take me home, and because I 'm a lady we would kiss goodnight and he would leave, with plans for a helicopter ride the next day to have lunch on top of a skyscraper.
See that's just too much for Brad to live up to. I think I watch to much of The Bachelor, and all the fantasy dates.
Friday, January 27, 2012
Day 2 of 30 Day Blog challenge
Hands down Dirty Dancing!
Now let me set the scene. Dirty Dancing came out in 1987, I was 5, the first time I watched it I feel in love, with the movie and Patrick Swayze. Mind you I was to young to understand half of what was going on in the movie, I remember wondering what "knocked up" meant! lol It was way to old of a movie for me, I don't know why my parents let me watch it, I guess they figured I was too young to even realize, which I was. Every year for my birthday I would have a sleep over and my Mom would rent it for me and my friends to watch, I loved it, still do. If I am channel surfing and find it I will watch it every single time no matter what part it is at. And no lie today when I started this post while at my nap study it came on the family channel, I unfortunately couldn't watch then because I was getting ready to take my nap for the study and then go home. I cried when Patrick died in 2009. He was my first movie star crush, that was until New Kids on The Block came out!
Now let me set the scene. Dirty Dancing came out in 1987, I was 5, the first time I watched it I feel in love, with the movie and Patrick Swayze. Mind you I was to young to understand half of what was going on in the movie, I remember wondering what "knocked up" meant! lol It was way to old of a movie for me, I don't know why my parents let me watch it, I guess they figured I was too young to even realize, which I was. Every year for my birthday I would have a sleep over and my Mom would rent it for me and my friends to watch, I loved it, still do. If I am channel surfing and find it I will watch it every single time no matter what part it is at. And no lie today when I started this post while at my nap study it came on the family channel, I unfortunately couldn't watch then because I was getting ready to take my nap for the study and then go home. I cried when Patrick died in 2009. He was my first movie star crush, that was until New Kids on The Block came out!
Tuesday, January 24, 2012
Day 1 of 30 Day Blog challenge
A few of my blogger friends are doing this and since I haven't been blogging much I figured I'd give it a try. I may not do one everyday (I will try) but life happens and things get put off sometimes. I will do them in order though.
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
Day 1- My favorite Song
This is so hard because there is so much music I love! If I had to pin point one song I think it would be AC/DC You Shook Me All Night Long. There are many reasons for this. I have so many memories attached to this song, a lot of them are at a young age rocking out with my parents! And this is the one song that will get me on the dance floor every time.
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
Day 1- My favorite Song
This is so hard because there is so much music I love! If I had to pin point one song I think it would be AC/DC You Shook Me All Night Long. There are many reasons for this. I have so many memories attached to this song, a lot of them are at a young age rocking out with my parents! And this is the one song that will get me on the dance floor every time.
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