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.
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