CF Awareness Month Blog #10 - Pros & Cons

Pros:

• I think the CF has really helped shape me into the person I am today, and I'm very proud of that person - I'm independent, strong, determined, a leader, optimistic & loving.
• I've been welcomed with open arms into the great online CF community! It's a wonderful place to meet people who are struggling through similar things and it's also an excellent place to reach out and help others. Thanks to Blogger, CysticLife, CFLiving, Facebook, etc...
• CF has forced me to be the healthiest version of myself. I want to take care of my body so it can last as long as possible. I feel that if I didn't have CF, I wouldn't understand how precious having a "healthy" body would be, and I don't think I'd take care of myself as well as I do now.
• Kind of going with the above statement, I feel like I have a greater appreciation for life. Being faced with a life-threatening disease, it makes you appreciate each day that you have knowing that your health could decline really at any moment. Of course, I hate to think like that, I really try to stay positive, and that's really made me enjoy everyday even more! And that's my motivation to be the healthiest version of myself!

Cons:

• It's time consuming! Having CF takes up a lot of time in my life with daily treatments and lots of doctor appointments. Sometimes I wonder what I'd be doing with all my time if I didn't have to do treatments...Along the same lines, it's annoying to have to lug all of my treatments with me whenever we go out of town.
• It's always something. I feel like there's always something that is 'wrong' whether it's low lung function, low weight, chest infection, diabetes scare....they never seem to all be 'good' at the same time.
• CF is expensive.
• It's emotionally tolling. It took me a long time to accept CF as a part of my life. It's always in the back of my mind that my health can decline, and that one day I might have to be in the hospital regularly with IVs, and that one day I might have to be listed for a lung transplant.

With all of this being said, to me it seems like the Pros far out-weigh the Cons here, for me. But I would still never wish that anyone would have to go through this. I can't say that I wish I never had CF because I don't know what kind of person I would have become without it and I am very proud of the person I am today. If I could get rid of CF today, I'd gladly do that because I'd still have the understanding and appreciation from living with CF for nearly 25 years...if that makes any sense.

New CFF Regulations

I received an email today from the Cystic Fibrosis Foundation informing me on the new infection control regulations between CFers. (My thoughts about it are below)

CF Foundation Updates Infection Prevention and Control Policy for All Foundation Events and Meetings

March 14, 2013

The Cystic Fibrosis Foundation recently updated its Infection Prevention and Control Policy for all Foundation events, meetings and offices to protect the health of people with cystic fibrosis.

The Foundation took this step based on increasing medical evidence of a greater risk that people with CF could spread destructive germs to others with CF, which may lead to severe or worsening lung disease. The new policy reflects the advice of leading CF medical experts and published medical research.

The key elements of the Foundation’s policy are:

• Indoor events: At any Foundation-sponsored indoor event or meeting, including gatherings such as chapter committee meetings, only one person with CF may be present and he or she will be designated in close consultation with event chairs and key event volunteers.
  
• Outdoor events: At Foundation-sponsored outdoor events or gatherings, people with CF need to maintain a distance of at least 6 feet from each other.
  
• B. cepacia: Under no circumstances shall individuals who have ever had a confirmed positive sputum culture for Burkholderia cepacia (B. cepacia)complex attend any Foundation events, meetings or offices.

“We understand that these changes may be difficult for many in our community,” said Robert J. Beall, Ph.D., president and CEO of the Foundation. “However, we want to be sure that we are doing all we can to reduce the risk of cross-infection among people with the disease. The health and well-being of people with CF is our top concern — it is at the heart of all we do.”

The Foundation is expanding its use of teleconferencing and live videocasts to help make it possible for people with CF to participate in indoor Foundation events and meetings and is exploring other new technologies to engage people with CF in all of its activities.

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I'm not quite sure how I feel about this. On one hand, I understand. It's to keep us healthy and from spreading our germs/bacteria to other CFers...but at what point to we have to put ourselves in a bubble? What about when I go to my CF clinic appointments, how are they going to seclude us in the waiting room? And I've even seen that at some Great Strides events (even though they're outdoors) CFers have had to wear a lei to identify themselves as having CF. Are all CF fundraising events going to be like this now? What about the black tie events and indoor things throughout the year where several CF patients were able to speak and tell about their experiences? It's tricky when we're trying to live as normal as possible, but yet we can't because we can't be around each other and everywhere we go we have to identify as a CFer. I'm not just a CF patient. I'm a daughter, sister, wife, aunt, teacher, and friend, too.

All I have to say is thank goodness  for social media! I'm very thankful to have things like Facebook, CysticLife, CFLiving.com, blogs, etc to connect with other CFers. When you're going through something, and you feel like no one else understands, what do you want to do? You want to talk to someone who's going through the same thing as you; you don't want to feel like you're completely alone in all of this and that's what Facebook, CysticLife, CFLiving, blogging, and forums have been able to do for me and many, many other cysters, fibros and parents of CFers. Although this is discouraging, we can't let it define us! We have to keep our relationships strong exactly how we've been doing it. It's so important now to spread the word about these amazing websites and forums for CFers to connect. 

Anyone want to buy me a webcam so I can keep in touch (and see) my cysters & fibros since I'm not allowed to see them unless we're yelling, outdoors, six feet away?! ;-)

Hodge-podge

This blog is going to be a little bit about a few of things I have on my mind currently - some will be a little bit of venting (sorry in advance) and some will be a little update on recent events, and whatever else I can think of.

First of all is my little (might be bigger than expected) venting session. Now, if you're a fairly new reader you might not be caught up on my hatred for smoking, so if you'd like to read about it you can go here. We have also faced a similar situation to which I'm about to explain and you can read about that here which makes me even more annoyed that I'm having to deal with this AGAIN, that was the whole reason we moved in the first place! Today I got home from school (work) and it smelled like not cigarette smoke in our apartment - it was the first thing I noticed. Now, I HATE the smell of cigarette smoke and I HATE even more the hate of this kind of smoke!! I kind of had a rough day at work, then I had to stay late (which was fine), then I had to go run a couple errands after work, so I was already kind of annoyed and tired, then I got home and smelled this and I was furious. (Sorry, Tim! He had to listen to all of my complaining.) I immediately went downstairs to talk to our neighbors.
For those of you who don't know, we live in the upstairs of a house and there are two guys that live on the main level. They've been fine so far (although I have smelled this before, but not this bad, and I've let it slide because we've always had the windows open), very nice and quiet. But now that we have the heat on and the windows closed, the smell was very strong. I knocked on their back door and a few seconds later one of the guys answered the door and I said, "If you're going to smoke, you need to do it outside." He said, "Okay." And then I said, "Because I can smell it coming up through our heat and it's going to be a major problem." He nodded his head and said okay. I went upstairs and opened the windows and turned off the heat to try to get rid of the smell. It doesn't seem too bad anymore, but I can't tell if I'm just used to it, or if it's going away. Hopefully I won't smell like it tomorrow when I leave the house - I don't think it was that strong for long enough to make everything smell bad. But, if I do smell it again, I will be calling the landlord (a good friend of mine's mom) to have her do something about it. They're lucky I'm not a b***h - I really could have called the police on them for something like that, but I wouldn't do that. I'm assuming they won't do it anymore. If they do, I'll tell them about my CF and why it's so important to do that OUTSIDE (or really not at all, but I'll keep that part to myself), but today I was too annoyed to tell them about it (plus I think he was in la-la land when I was talking to him). Now that I have that 'off my chest' I'll try not to be so crabby tonight.

Another thing I wanted to write about was the wonderful weekend we had! It was Tim's sister's baby shower this weekend, so myself, Tim, and Tim's aunt & uncle drove down about 4 1/2 hours to spend the weekend with her and our family. She's due in December with their first child, a little boy, who they'll be naming Isaac David. I'm very excited that we're going to have a second nephew! :-) She got lots of cool stuff for baby and we're all anxiously awaiting his arrival. I also got several comments about how when Tim and I have kids, we need to have a girl because there are too many boys in the family right now. :-)

Speaking of babies, I have to say CONGRATULATIONS to my fellow fibro (male w/ CF) Ronnie and his wife on their beautiful baby girl born this morning! I follow his blog which you can read here, and he also is the creator of my other favorite site CysticLife. Their daughter was born a couple weeks early, so she was a surprise to all of us on CysticLife who have been anticipating her arrival soon!

And finally, I wanted to clarify about my compliance lately with my treatments. Don't worry, I'm still at my record of 10 weeks, but it's been about 97.5% compliance. I have completed 100% of my Vest treatments and all nebulizers since July 31st. I have, unfortunately, missed a few puffs of my Advair and two or three days of vitamins. I know it may not sound like much missed, and it's really not, but I would love to be able to say that I haven't missed/forgotten anything since the end of July, but I am still very proud of myself for what I have accomplished. I was very tempted to skip my nighttime treatment on Saturday because I was so exhausted from our day's activities and we were staying in a hotel, but I forced myself to do it. I wasn't going to throw away 10 weeks of hard work and dedication to get to bed just a little earlier, especially when I dragged all of my crap along anyway. It is still possible to do treatments in a hotel:

Darn it!!! I just realized that I missed the first 30 minutes of my new favorite show, The Sing Off. And I said to Tim, "UGH, this is the worst day ever!!" It's really not, I'm being overly dramatic and I'm extremely hungry (which means crabby). I just need to eat and go to bed!

Ahhh....It's just one of those days...

Never In A Million Years

Never in a million years did I think I would be posting about something like this and posting pictures. But it's something that I've had to deal with my whole life, especially more so over the past few years as I've gained weight. Don't get me wrong, as a CFer, I'm supposed to have a healthy weight, so gaining weight is encouraged, but it's hard when I don't like the way it looks. What am I talking about? My lovely CF belly! If you know me, you know what I'm talking about and I'm sure you've seen it. I thought it was just the way I was built until I joined CysticLife and realized it's a CF thing....awesome, thanks CF.

I was always underweight in high school and before, but when I went to college, I started steadily gaining weight. For CFers, it's hard for us to absorb fats/nutrients from our food, so it's hard to gain/maintain our weight. When I started gaining, my doctors were very pleased, but I was not. It was hard as a college student to start gaining weight, and noticing it physically, but I knew I had to do it to be healthy. I'm now at a healthy weight that both the doctors and I are pleased with, but it's still always in the back of my mind that my belly sticks out. Plus, I have three scars on my stomach from a surgery when I was born, so I feel like it gives a look of rolls...even better. It also doesn't help that I've got skinny little arms and legs, so I feel like it sticks out even more. Doesn't matter how much I've eaten, or not eaten, if I'm bloated or not, it's always there. In fact, last week at school I had a student ask me if I was pregnant -- not something I was happy to hear about, but oh well, gotta laugh it off. I can't wait to actually be pregnant so I have a reason to have a belly! I'm not posting all of this to say how I feel bad about myself, it's just another 'joy' of CF. So, without further ado...here are a couple lovely pictures of the infamous CF belly:

July 2010 - Lovely, huh? Doesn't help that I'm about
to eat an enormous amount of my birthday cake!

October 2010 - I hate that I have this picture because
it's from my wedding day, but that's what it looks like
when I'm relaxed. Plus I was at my heaviest
weight here (4 pounds more than today)

July 2011 - Taking a break from hiking

I want to thank Inhaling Hope (another CF blog I follow) for giving me the courage to create a post about this - read her blog about her CF belly here....see I'm not the only one! :-)

Out Run CF

Since joining CysticLife and getting myself more involved in the CF community, I've come across this new awesome opportunity for exercise and CF awareness! The best part, is that anyone can do it! I've just started exercising (mostly walking) and this is something I plan on participating in this year, hopefully running! I am inviting every single one of my readers to register, too!


The first Out Run CF Virtual Race was a huge success. Runners and walkers from all over the world came together with one thing in mind, to Out Run Cystic Fibrosis! This fall, on October 1, 2011, we plan to do it again. The Rock CF Foundation and CysticLife are joining forces, once again, to bring you another Out Run CF Virtual Race.

In case you missed out last time, or need a refresher, here is how it works. Anyone and everyone is invited to participate: Fibros, Cysters, parents, spouses, friends, extended family, you name it! Participants will find a route near their house. Then on October 1, 2011, EVERYONE will lace up their sneakers and hit the pavement in their Out Run CF shirt (Each registrant will receive a t-shirt unique to this fall’s race from us in the mail).

No distance is too long, or too short. YOU pick YOUR mileage. 1 mile? 5K? 10K? 10 miles? Half Marathon? Marathon? It’s up to you! Nothing is too fast or too slow YOU pick YOUR speed. We just want to get the entire CF community out of their houses and into their running shoes on the same day, for the same cause.

Registrants can blog about their training, ask questions, and share tips on CysticLife.org. We want the entire site to be plastered with talk of exercise, running, and encouragement. On race day, we want people to post their times and their experiences. Let’s make this Virtual Race even BIGGER than the first one! Let’s make it the biggest race the community, and the world, has ever seen!!

So here again are the hard facts:

Who: Everyone
What: Outrun CF Virtual Race held by Rock CF Foundation and CysticLife
When: October 1, 2011
Where: Anywhere
Why: Because anyone can run—whether it’s for a minute or a marathon! Together we can Out Run CF.
How : Register at http://www.active.com/running/anytown-mi/out-run-cfvirtual-run-fall-edition-2011

Helpful sites to get you started:

CysticLife.org—Blog about your progress, ask questions about training to the community, post Airwaves with your daily run updates, connect with others to encourage them and be encouraged

Dailymile.com—Make and account and join the Rock CF/CysticLife group to track your miles and keep track of others!

Facebook.com—Join the Out Run CF group to see how many people are outrunning CF and connect with them! 

You Know You Have CF When...

This is something I found off of my new favorite site, CysticLife. Obviously not all of them apply to me, but most of them do! Enjoy!
*You do a happy dance when you hack up a huge wad of mucus, show your dad, and he gives you a congratulatory high five.
*You know more medical terms by the age of ten than most people know their whole lives.
*You have your pharmacist, family doctor, CF doctor, the emergency room that you always use, and your medical insurance company as numbers 1-10 on your cell phone's speed dial.
*You have multiple scars from PICC lines, IVs and other 'experimentations' as the doctors like to call them.
*You are so used to getting your blood drawn that you are the proverbial 'test dummy' for all the new nurses fresh out of college - you don't mind, do ya?
*You have antibacterial gel in your purse, in your car, on the kitchen counter, in the bathroom, in your friend's dorm, in their car - hell everywhere!
*You can smell smoke hundreds of feet away and go searching for the source so you can thump them upside their retarded heads!
*You adamantly think that smokers are some of the dumbest people you know!
*You laugh at those who bitch and moan from a common cold or worse yet, stay home because of it!
*You are truly sad for those cute little lab mice who must suffer from experimentations so we can have medicines to help us live - for about 1 milli-second then you jump for glee because they came up with something to help you breathe!
*You can instruct the nurses how to work the IV machine at the hospital.
*Some of the most memorable times with your friends is hanging out and wasting time at the hospital.
*You have also learned who your real friends are because most people can't take the pressure of being around a person who has CF.
*You make people wince on a daily basis because of the sound of your cough.
*The checkout lady at Wal-Mart has confidently told you that she just got over whatever I have and Theraflu worked for her, which you calmly and sarcastically say, 'I will make sure to tell my doctors.'
*You can sleep through anything - you perfected the skill by being shaken by your Vest all of these years.
*You are a multi-tasker by need. While you're doing your Vest you MUST eat breakfast, do your nebulizers, homework, make-up, straighten your hair and have a conversation with your mother about your most current ache in your chest all at once or it would never get done.
*You learn by the age of 15 that life is a gift and most people don't see it's pretty paper.
*You have used your Vest multiple times as a torment device for your dog by blowing air at him and watching him try to catch it in his mouth, entertainment device for kids because a shaking vest is a fun 'toy' and a laughing tool for adults when you try to talk to keep up with the conversation, even on the maximum setting.
*Many adults have commented to you that you are very wise/mature for your age.
*If Albuterol and Xopenex were living things you would marry them because according to you, they were sent from heaven by God to us CFers for a little help in the breathing department.
*You laugh at your friends and their newest drama - ha! Don't we all wish it was THAT easy!
*You are constantly on the go, realizing that time stands still for no one.
*You feel as if there is ALWAYS someone worse off than you somewhere.
*You truly get pissed at people who don't put 'yes' as organ donors on their driver's license.
*You grew up thinking that everyone in your class does machines, nebulizers, inhalers, sprays and pills for an hour or two each morning before they came to school and an hour or two after.
*You are more scared of losing your loved ones, family and friends than you are of dying yourself.
*You realize at an extremely young age that you can buy everything but time and as a CFer, that is one thing you would love to have.
*You get asked on a daily basis how old you are - and you just have to laugh when people rudely say you look 12 and not 18.
*When dogs and babies lick your ever-so salty skin.
*After working out, or just being in the heat, you have a visible film of salt covering your entire body.
*You look at food labels and say things like, "Sweet! 600 calories per serving!"
*You are so tired of people saying "have another smoke!" after you finish a coughing fit, and you wonder if they are worth the real explanation.
*You have an extra dessert and everyone wonders where you put it, because it sure doesn't go to your hips!
*You make sure you don't go to the bathroom BEFORE you get weighed at clinic - every ounce counts!

Communication

People with Cystic Fibrosis are not supposed to come into contact with other people with CF because they can share each others germs and/or get each other sick - makes sense, I suppose. But sometimes it's nice to be able to talk to someone who really understands what you're going through, and thankfully the internet is making that possible today. I recently joined a site called CysticLife which is a site where people with CF (or people that know someone with CF - like you!) can chat with each other, or post questions to everyone and get some advice and feedback.
I really enjoy being a part of this site, because although I know I have so much support from Tim, and my friends and family, it's hard for anyone to know exactly what I'm going through or how I'm feeling. It's nice to be able to hear what other people with CF are going through and see what works or what doesn't work for them.
Like I mentioned before, just because you do not have CF doesn't mean that you can't join the site. I am considered a "cyster" because I am a female with CF, the males with CF are called "fibros" and then everyone else would be called "husband, wife, mom, dad, friend, etc." If you're looking for a site where you can get more personalized stories, or you have questions about your role in a CFers life, this is the perfect place to go!
I'm very interested in hearing how other people feel when they have someone with CF in their lives. That's another part of the site I really like. I can read stories or answer questions from parents who have children with CF. It makes me think about how my parents must have been feeling when they were raising me.

What is it like for you to know someone with CF (maybe not just me)? Does it make you think any differently, or do you completely forget about it until I post something about CF? I honestly would love to hear other people's points of view on what they think about my CF, or what they thought when they found out, etc. Please feel free to share your thoughts by commenting at the bottom of the post (or if you don't feel comfortable doing it publicly, you could always send an email). :-)

My First Post!

My name is Colleen, I'm 22 years old and I have Cystic Fibrosis (CF). I was diagnosed with CF at birth and have accepted it as a part of my life. Luckily, I've been very healthy and have not been hospitalized since I was born. Keeping a positive attitude and keeping up with all of my treatments is going to keep up that record, hopefully for years to come!

I love the saying, 'live, laugh, love' and will base my blog off it when I can.

Live: "You were given this life because you are strong enough to live it." One thing you'll learn about me, is I really like quotes. I think this quote is absolutely true. This is the life I was given, and I'm going to live it to the fullest of my ability, because I can! The average life expectancy for a person with CF is late 30s, maybe into the 40s. I am determined to beat that statistic; to live!

Laugh: I laugh at everything! Laughter is the best medicine...it makes me cough! Having a sense of humor is important to me and laughing everyday is a necessity. Joking and laughing with friends and family is the best!

Love: I have lots of love in my life, especially from close friends. I recently got married in October 2010, to my super supportive husband, Tim, and became a part of an extremely loving and supportive family of in-laws! Without happy, supportive, encouraging people surrounding me in my everyday life, living with CF would certainly be a struggle.