I decided to be a good cyster and take a workout class to make sure I get some fitness in, despite my lack of will-power. I joined the Aerobic Dance & Conditioning class at 8 every Tues/Thurs morning. So far, it has showed me just how out of shape I have gotten since high school!! The first real day of class, last Thursday, we did circuit training with push-ups, crunches, running, and a few other things. It hurt, but it felt great! Tuesday, we ran a 1.5 mile run. We will do it again at the end of the quarter to see how we improved. I ran it in 15:35, so roughly a 10 min. mile. Works for me!! I thought that it was pretty good for being out of shape, so I can't wait to see what I can do in 10 more weeks.
-Andrea
Wednesday, March 16, 2011
Sunday, March 13, 2011
2 Years!
Dear friends,
It has been right about 2 years since I've been in the hospital. My last IVs (at this time) were for my sinus surgery/post-surgery pneumonia if you want to even count that as IV treatment. If not, then the last time for IVs was in NOVEMBER of 2008. WOW!!!
I just wanted to post that because it dawned on me today that the end of March was that milestone. How exciting!
Thought I would share in my excitement!
-Andrea
It has been right about 2 years since I've been in the hospital. My last IVs (at this time) were for my sinus surgery/post-surgery pneumonia if you want to even count that as IV treatment. If not, then the last time for IVs was in NOVEMBER of 2008. WOW!!!
I just wanted to post that because it dawned on me today that the end of March was that milestone. How exciting!
Thought I would share in my excitement!
-Andrea
Friday, March 11, 2011
Body talk
So as of late I've become more aware of my body shape/size compared to my peers. It helps that other people like to comment on it too. Don't take me as vain, I'm not, but it's nice knowing that my good and bad genes are working together to create something that isn't half bad!
I'm the friend my friends like to dress up. Seriously. I'm the Barbie of some of my friends. It's actually really fun though. I'm the size of most mannequins, seeing as I like to take the clothes off of the mannequins and buy them! I'm thin, not too thin, and actually have some shape and character to my body. I'm not a twig (anymore). Finally, FINALLY, I like my body.
The only thing I don't like is my lack of muscle tone, but guess who just started doing circuit training again!! Oh yeah, I'm getting those legs back. Can't wait.
However recently I had a bump in the road. I went to a store, that shall remain publicly nameless, to find a dress for meetings. I found a really cute one, grabbed the small, and went to try it on. It was way too small for me. It also came with a belt that wrapped around the smallest part of the waist: I couldn't clasp it.
Hear me out: I'm a size 3 and couldn't fit into a SMALL at a normal store that I have bought clothes from before. I was livid and gave the store a piece of my mind. I didn't fuss at the employees, it's not their fault, but I stood outside of the store and fussed to the general store opening. Pathetic, maybe, but think about it for a second: if I was a "normal" 20 year old girl, I might have serious body image issues and might feel I'm too fat, since I can't fit into a small, despite the fact that I'm a size 3. It's moments like those that feed the body image problems of anorexic girls. Touchy subject, but it is a REAL subject and a REAL problem. And putting me, and girls my size, into a medium dress may not sound like a big deal, but even I was embarrassed for myself. It took me a minute to come back to reality (that maybe the dress was shaped different that I am, that maybe it was labelled wrong, that maybe it was just that style of dress, etc.) but that minute was long enough to hurt my feelings! And I'm TRYING to get fat!! Just think, for just a moment, how if that scenario can mess with MY head, how much damage it can do to a young lady's mind who already has body issues. Yeah, now we're on the same page.
Enough body talk for now.
Have a great day. :]
It's FRIDAY!
-Andrea
I'm the friend my friends like to dress up. Seriously. I'm the Barbie of some of my friends. It's actually really fun though. I'm the size of most mannequins, seeing as I like to take the clothes off of the mannequins and buy them! I'm thin, not too thin, and actually have some shape and character to my body. I'm not a twig (anymore). Finally, FINALLY, I like my body.
The only thing I don't like is my lack of muscle tone, but guess who just started doing circuit training again!! Oh yeah, I'm getting those legs back. Can't wait.
However recently I had a bump in the road. I went to a store, that shall remain publicly nameless, to find a dress for meetings. I found a really cute one, grabbed the small, and went to try it on. It was way too small for me. It also came with a belt that wrapped around the smallest part of the waist: I couldn't clasp it.
Hear me out: I'm a size 3 and couldn't fit into a SMALL at a normal store that I have bought clothes from before. I was livid and gave the store a piece of my mind. I didn't fuss at the employees, it's not their fault, but I stood outside of the store and fussed to the general store opening. Pathetic, maybe, but think about it for a second: if I was a "normal" 20 year old girl, I might have serious body image issues and might feel I'm too fat, since I can't fit into a small, despite the fact that I'm a size 3. It's moments like those that feed the body image problems of anorexic girls. Touchy subject, but it is a REAL subject and a REAL problem. And putting me, and girls my size, into a medium dress may not sound like a big deal, but even I was embarrassed for myself. It took me a minute to come back to reality (that maybe the dress was shaped different that I am, that maybe it was labelled wrong, that maybe it was just that style of dress, etc.) but that minute was long enough to hurt my feelings! And I'm TRYING to get fat!! Just think, for just a moment, how if that scenario can mess with MY head, how much damage it can do to a young lady's mind who already has body issues. Yeah, now we're on the same page.
Enough body talk for now.
Have a great day. :]
It's FRIDAY!
-Andrea
Thursday, February 24, 2011
Fear can sometimes be encouragement
The title of this post says it all. I have a twitter follower request from a 24 year old woman waiting on her new lungs. Cystic Gal got her lungs right around age 30. The boy JM I've mentioned before got his lungs in December. Even Grey's Anatomy today was about a CF patient getting his new lungs! I read Facebook posts, blog posts, tweets, and news articles about people getting new lungs. I even cut open a sheep's lung the other day in my Anatomy & Physiology II lab. Lungs lung lungs. I like mine. I'd like to keep mine. I hope to never have to give them up.
My good results from Cayston at the last check up gave me hope. If I stick with Cayston, Albuterol, Pulmozyme, and the Vest, plus my cardio I'm adding next quarter...well, let's keep these air bags healthy!! Sound like a plan?
At my last appointment, I spoke with JM's mom. She spoke about his year prior to his transplant. It was a very tough year for him, brought on mostly by his own personal life choices that had finally all caught up with him. She asked me a question that never in my wildest dreams would someone ask me at this point in my life: "Have you ever had to be on a ventilator?" The look of shock on my face was clear. Of course not. I'm 20, healthy, and living my life. Why on earth would I be vented? Well JM had and his mom described it as one of the most terrifying things.
Hello, motivation.
While my doctor's have never even whispered the word "transplant" to me, and my PFTs are too high to even think about it, it sure has been on the front of my mind a lot. I'm actually kinda bullied into being on top of my treatments by the overwhelming amount of transplant talk. Is that a good thing? Maybe. The result of the lingering topic is good, but being scared into good health isn't. I'm hoping that I can alter my own attitude from being afraid to being proactive. Either way, I plan on keeping these lungs forever by taking care of them and staying in shape.
I once told my friend, crying, that if I was ever excited about being on a TX list that she needed to snap me back into reality. While it may be an exciting time for many people, and congrats to them, it is some place I hope to never be.
I apologize if some of you find my last statement offensive. It is not meant to degrade anyone, but simply voice my personal feelings about the situation in regards to myself.
On a lighter note, I'm done with Winter Quarter! I get a short break, then back for 2 days, then off for MARDI GRAS! Sophomore year is flying by. WEIRD.
Sorry for being MIA lately. I really had to buckle down and focus all free time on school. You even missed a leg injury that I really thought was a fractured bone!! 2 weeks later (today), it still hurts to the touch and sometimes even to walk. So maybe I did do something to it. Regardless, I'm a quick healer and was walking normally by the next day.
That's all for now. Hope to be back posting more often now that I'm done with finals!
-Annie
My good results from Cayston at the last check up gave me hope. If I stick with Cayston, Albuterol, Pulmozyme, and the Vest, plus my cardio I'm adding next quarter...well, let's keep these air bags healthy!! Sound like a plan?
At my last appointment, I spoke with JM's mom. She spoke about his year prior to his transplant. It was a very tough year for him, brought on mostly by his own personal life choices that had finally all caught up with him. She asked me a question that never in my wildest dreams would someone ask me at this point in my life: "Have you ever had to be on a ventilator?" The look of shock on my face was clear. Of course not. I'm 20, healthy, and living my life. Why on earth would I be vented? Well JM had and his mom described it as one of the most terrifying things.
Hello, motivation.
While my doctor's have never even whispered the word "transplant" to me, and my PFTs are too high to even think about it, it sure has been on the front of my mind a lot. I'm actually kinda bullied into being on top of my treatments by the overwhelming amount of transplant talk. Is that a good thing? Maybe. The result of the lingering topic is good, but being scared into good health isn't. I'm hoping that I can alter my own attitude from being afraid to being proactive. Either way, I plan on keeping these lungs forever by taking care of them and staying in shape.
I once told my friend, crying, that if I was ever excited about being on a TX list that she needed to snap me back into reality. While it may be an exciting time for many people, and congrats to them, it is some place I hope to never be.
I apologize if some of you find my last statement offensive. It is not meant to degrade anyone, but simply voice my personal feelings about the situation in regards to myself.
On a lighter note, I'm done with Winter Quarter! I get a short break, then back for 2 days, then off for MARDI GRAS! Sophomore year is flying by. WEIRD.
Sorry for being MIA lately. I really had to buckle down and focus all free time on school. You even missed a leg injury that I really thought was a fractured bone!! 2 weeks later (today), it still hurts to the touch and sometimes even to walk. So maybe I did do something to it. Regardless, I'm a quick healer and was walking normally by the next day.
That's all for now. Hope to be back posting more often now that I'm done with finals!
-Annie
Monday, February 7, 2011
Interview with Fatboy and Beautiful!
Many thanks to CF Fatboy and his wife Beautiful for taking time out of their busy schedule to answer a few questions!
Fatboy's interview!
1. Tell the blogging community a little about yourself, Fatboy.
We live in Tampa and I graduated high school with a full-ride scholarship to USF (Go Bulls!), which I promptly lost and had to get a job. 13 years later, I finally graduated and got on with my life with that monkey off my back. I proposed to Beautiful the month after she graduated from USF (we dated her whole time at college) and were married that fall. That was 4 years ago! We now have a townhome, 2 cars, 0 kids, and 0 pets - almost average by all accounts.
2. When were you diagnosed and how did your family react?
I was full of crap coming out the chute, so they knew I had issues. I suppose they were freaking out about how to pay for all the surgeries I needed and relieved to know what was wrong with my older sister. She lost her fight a couple years later, so all of their energy was spent keeping me going, and here I am - 32 years old living life better than they could have dreamed 28 years ago.
3. What are your gene mutations?
ΔF508/ΔF508
4. Tell us a little about your medical history; surgeries, hospitalizations, and anything else other than CF that plagues you!
Meconium ileus, jejunal atresia, 10 sinus surgeries, and countless blockages. I have a knack for getting in-grown hairs that require a trip to the family doctor for some scalpel work. Other than that, CF is pretty much the root cause of all of my health issues, though I may be facing diabetes (even from otherwise healthy family members) and rheumatoid arthritis in the next 10-20 years.
5. What has been your greatest motivation throughout the years to stay healthy?
Times past, nothing. Now, I have Beautiful. I'm not allowed to die before her.
6. What has been your greatest challenge?
Finding balance between relationships, work, health, and "me time." I am a workaholic who is a recovering lazy butt by nature (though never really by actions - strange, I know) who is finally living the dream of owning my own company, working from home, and finally trying life with one income for some added sanity. This constant drive to work has a negative impact on my health because stress directly affects my weight and ability to fight off infections while wife and "me" time are left fighting it out for the available time when I'm not working.
7. Who is your greatest inspiration and why?
I'd have a hard time deciding between Beautiful for putting up with me and Joseph in the bible for all the crap he went through being sold into slavery and how he persevered to become the second most powerful man in the land. I sometimes think I have his determination, and that helps keep me going sometimes. It's a great account of a great man, for those who haven't read the whole thing.
8. What is your greatest fear about having CF?
Leaving Beautiful with a mortgage and a bunch of business deals that she would have to make contact with to tie up lose ends and some freak thing where my life insurance gets denied on a technicality, leaving her only with what we have saved. I do NOT want to leave that as legacy!
9. What are you most grateful about for having CF, if anything?
It keeps me humble. It's my thorn in my side. That's all I have to be thankful for having it, even though some nice things have come from the people I meet and things I do, but I'd never wish it upon my worst enemy.
10. What are your goals for your CF health and your life in general?
I will be here for the cure and the eventual progress with transplants to get new lungs after they perfect the whole rejection thing and will outlive everyone in my generation and above me, looking like a pro athlete all the while; the more like a linebacker, the better.
11. So why did you enter the blogging world and what did you hope to accomplish with it?
Unrelated to CF, I started blogging in 2005 and made quite an alias name for myself back then. One thing led to another to another to another, and when I was finally ready to turn my CF health around, blogging about it was the natural thing to do. I aim to change the standard of thinking about CF and what people can do with it and how they can beat its natural progression.
Now that all of those tips and steps are there, I am moving more into motivational topics. It's so easy to default to letting life get you down, even for healthy people, so anything I do to put some positive things into daily living to stand out from the din of depression that is the majority of life's input into our minds will hopefully help others, too.
12. Continuing with the previous questions, what HAVE you accomplished with your blog?
I've heard from quite a few people that I've done just that already, so I aim to keep on keeping on. So far, moms have changed their thinking from despair and grief to hope while guys just like me have ditched the idea that CF has complete control over when we go on IVs, making gaining weight a key component to healthier life.
13. Why did you decide to sell the CF Awareness Bracelets and how would someone go about ordering one?
I decided to sell them after we attended our Great Strides walk and they gave us yellow bands for the leaders (Hello, Lance Armstrong) and blue ones for the other walkers. What the heck? CF's color is purple. I looked around and couldn't find any purple CF awareness bands online. I'm out of stock right now, but we just ordered more this week, so when they arrive in the next couple of weeks, they can be snatched up at http://www.cffatboy.com. Coming soon, we will have some more options for CF awareness, but we are going to work out those details when I have finished some more projects.
14. So I read on your blog the other day that your wife is now working with you. How’s that going?
We are 2 days in and so far so good. We just celebrated our second company anniversary on Groundhog Day!
And let's hear from Beautiful!
1.Tell us about yourself, Beautiful!
I'm 26 years old. I'm a University of South Florida graduate. I majored in Business Administration with a minor in Marketing. I married the best husband ever, 4 1/2 years ago. I enjoy shopping, scrapbooking, reading, and blogging.
2.When did you and Fatboy start dating? How did you meet?
We started dating right after I graduated from high school. Our families went to the same church, so we met doing youth group activities together. We dated all through my time in college, and got engaged as soon as I finished my degree.
3.When did he tell you he had CF and how? How did you react? How were you able to accept it?
I kinda always knew something was "wrong" with him, but I didn't know what it was. It was pretty sad and scary to think that he was never going to get better. I just had to decide that I would rather spend as much of my life with him for as long as he had, then to leave him now because of the fear that he might get sick sometime.
4.What roles do you play in Fatboy’s health?
I try to encourage and remind him to do all of his treatments everyday. I keep track of all of his prescriptions and fill his pill container with his daily vitamins. I also try to plan meals that I know I can add a little extra calories/fat to his portion, like topping his half with extra sauce or cheese.
5.You have a blog of your own! Why did you decide to start blogging and what did you hope to accomplish with it?
Jesse had been trying to talk me into my own blog for a long time. I honestly didn't think that anybody would read it. Then I realized how much time I spent enjoying other people's blogs and thought I would finally give it a try. I really enjoy it because it gives me a chance to process things that happen in our lives and share them when I'm ready. The best thing about blogging has been all of the CF friends I have been able to meet. It is so great to get to know other people that are going through the same things that you are.
6.Are you excited about working with your husband from home?!
I am so excited about starting to work at home. We have been wishing we would be able to do this for a long time. I can't wait to see what great things we are able to accomplish this year by putting all of our energy in one direction!
Thanks again! Please pay them a visit at www.cffatboy.com and www.kristinology.com!
-Andrea
Fatboy's interview!
1. Tell the blogging community a little about yourself, Fatboy.
We live in Tampa and I graduated high school with a full-ride scholarship to USF (Go Bulls!), which I promptly lost and had to get a job. 13 years later, I finally graduated and got on with my life with that monkey off my back. I proposed to Beautiful the month after she graduated from USF (we dated her whole time at college) and were married that fall. That was 4 years ago! We now have a townhome, 2 cars, 0 kids, and 0 pets - almost average by all accounts.
2. When were you diagnosed and how did your family react?
I was full of crap coming out the chute, so they knew I had issues. I suppose they were freaking out about how to pay for all the surgeries I needed and relieved to know what was wrong with my older sister. She lost her fight a couple years later, so all of their energy was spent keeping me going, and here I am - 32 years old living life better than they could have dreamed 28 years ago.
3. What are your gene mutations?
ΔF508/ΔF508
4. Tell us a little about your medical history; surgeries, hospitalizations, and anything else other than CF that plagues you!
Meconium ileus, jejunal atresia, 10 sinus surgeries, and countless blockages. I have a knack for getting in-grown hairs that require a trip to the family doctor for some scalpel work. Other than that, CF is pretty much the root cause of all of my health issues, though I may be facing diabetes (even from otherwise healthy family members) and rheumatoid arthritis in the next 10-20 years.
5. What has been your greatest motivation throughout the years to stay healthy?
Times past, nothing. Now, I have Beautiful. I'm not allowed to die before her.
6. What has been your greatest challenge?
Finding balance between relationships, work, health, and "me time." I am a workaholic who is a recovering lazy butt by nature (though never really by actions - strange, I know) who is finally living the dream of owning my own company, working from home, and finally trying life with one income for some added sanity. This constant drive to work has a negative impact on my health because stress directly affects my weight and ability to fight off infections while wife and "me" time are left fighting it out for the available time when I'm not working.
7. Who is your greatest inspiration and why?
I'd have a hard time deciding between Beautiful for putting up with me and Joseph in the bible for all the crap he went through being sold into slavery and how he persevered to become the second most powerful man in the land. I sometimes think I have his determination, and that helps keep me going sometimes. It's a great account of a great man, for those who haven't read the whole thing.
8. What is your greatest fear about having CF?
Leaving Beautiful with a mortgage and a bunch of business deals that she would have to make contact with to tie up lose ends and some freak thing where my life insurance gets denied on a technicality, leaving her only with what we have saved. I do NOT want to leave that as legacy!
9. What are you most grateful about for having CF, if anything?
It keeps me humble. It's my thorn in my side. That's all I have to be thankful for having it, even though some nice things have come from the people I meet and things I do, but I'd never wish it upon my worst enemy.
10. What are your goals for your CF health and your life in general?
I will be here for the cure and the eventual progress with transplants to get new lungs after they perfect the whole rejection thing and will outlive everyone in my generation and above me, looking like a pro athlete all the while; the more like a linebacker, the better.
11. So why did you enter the blogging world and what did you hope to accomplish with it?
Unrelated to CF, I started blogging in 2005 and made quite an alias name for myself back then. One thing led to another to another to another, and when I was finally ready to turn my CF health around, blogging about it was the natural thing to do. I aim to change the standard of thinking about CF and what people can do with it and how they can beat its natural progression.
Now that all of those tips and steps are there, I am moving more into motivational topics. It's so easy to default to letting life get you down, even for healthy people, so anything I do to put some positive things into daily living to stand out from the din of depression that is the majority of life's input into our minds will hopefully help others, too.
12. Continuing with the previous questions, what HAVE you accomplished with your blog?
I've heard from quite a few people that I've done just that already, so I aim to keep on keeping on. So far, moms have changed their thinking from despair and grief to hope while guys just like me have ditched the idea that CF has complete control over when we go on IVs, making gaining weight a key component to healthier life.
13. Why did you decide to sell the CF Awareness Bracelets and how would someone go about ordering one?
I decided to sell them after we attended our Great Strides walk and they gave us yellow bands for the leaders (Hello, Lance Armstrong) and blue ones for the other walkers. What the heck? CF's color is purple. I looked around and couldn't find any purple CF awareness bands online. I'm out of stock right now, but we just ordered more this week, so when they arrive in the next couple of weeks, they can be snatched up at http://www.cffatboy.com. Coming soon, we will have some more options for CF awareness, but we are going to work out those details when I have finished some more projects.
14. So I read on your blog the other day that your wife is now working with you. How’s that going?
We are 2 days in and so far so good. We just celebrated our second company anniversary on Groundhog Day!
And let's hear from Beautiful!
1.Tell us about yourself, Beautiful!
I'm 26 years old. I'm a University of South Florida graduate. I majored in Business Administration with a minor in Marketing. I married the best husband ever, 4 1/2 years ago. I enjoy shopping, scrapbooking, reading, and blogging.
2.When did you and Fatboy start dating? How did you meet?
We started dating right after I graduated from high school. Our families went to the same church, so we met doing youth group activities together. We dated all through my time in college, and got engaged as soon as I finished my degree.
3.When did he tell you he had CF and how? How did you react? How were you able to accept it?
I kinda always knew something was "wrong" with him, but I didn't know what it was. It was pretty sad and scary to think that he was never going to get better. I just had to decide that I would rather spend as much of my life with him for as long as he had, then to leave him now because of the fear that he might get sick sometime.
4.What roles do you play in Fatboy’s health?
I try to encourage and remind him to do all of his treatments everyday. I keep track of all of his prescriptions and fill his pill container with his daily vitamins. I also try to plan meals that I know I can add a little extra calories/fat to his portion, like topping his half with extra sauce or cheese.
5.You have a blog of your own! Why did you decide to start blogging and what did you hope to accomplish with it?
Jesse had been trying to talk me into my own blog for a long time. I honestly didn't think that anybody would read it. Then I realized how much time I spent enjoying other people's blogs and thought I would finally give it a try. I really enjoy it because it gives me a chance to process things that happen in our lives and share them when I'm ready. The best thing about blogging has been all of the CF friends I have been able to meet. It is so great to get to know other people that are going through the same things that you are.
6.Are you excited about working with your husband from home?!
I am so excited about starting to work at home. We have been wishing we would be able to do this for a long time. I can't wait to see what great things we are able to accomplish this year by putting all of our energy in one direction!
Thanks again! Please pay them a visit at www.cffatboy.com and www.kristinology.com!
-Andrea
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