Cysters and Fibros:
Before I get into a discussion about Cysters and Fibros and our online CF community, let's fist pump at the fact I have done 10 nebulizer treatments and my stomach feeding every day since New Years. I EVEN jogged today, it was at 5am, but it counts!
The last couple nights I have been thinking about the Online Community CFers (ppl w/Cystic Fibrosis) have built. The terms Cyster ("sister" with CF) and Fi-BRO ("bro" w/CF) is what have we have started to call each other in online groups. It makes sense when I think about how much we share with each other online. I'm in 5 CF sites/ groups. I have gotten to know quite a few people this way, and have become good friends with some too!
It may seem weird that people can get to know each other so well online, but you have to remember CFers are discouraged to be around other CFers, since we can spread the "CF bugs" from one to the other. Therefore, I , like many, go online to share my negatives and positives about CF.
However, where it gets a little weird, is when I think about stuff I have shared on CF pages and not with non-CF friends that I see day to day. I tend to not want to drag them into my "CF stuff."
It's weird knowing they aren't part of that. I've been up the last couple nights just thinking about how much I want to keep getting healthier.
Take Sunday for example: I saw on one of our groups that a fellow Cyster (an upbeat, amazing girl that was my age) passed away. I also saw another "cyster" friend is on the transplant list. And I was reminded Danny's 28th Birthday would have been next month. It just made me realize how forunate I am and how much harder I want to push to keep myself as healthy as possible. Sunday was a huge motivation to keep me on the right track. I thought about it for a long time that night, then thought about more ways the CF community could reach out to each other while I was jogging that morning. Sometimes going for a jog makes me think better, and get my mind and thoughts out of the way of my sleeping. I will wake up wide awake thinking, so I go jog, clear my mind, and go back to sleep... It works. During my Jog, I thought of a lot of ways/ideas that I can take my personal experiences and use them in my career (Medical Social Worker) to help other CFers. I want to make sure CFers have the programs, meds, machines, financial help, and all other kinds of help that may be needed, in order to help them achieve their goals and maintain their health. All the online and social networking that is available today can help me to achieve this goal!
When tough days happen, it can be hard to think about everything. But the toughest thoughts or days always motivate me the most.
I'm going to continue to do all my meds (10 breathing treatments) and stomach feeding every day, while jogging when I can. (note: I have gone upa few lbs in the last week too) On the right track and very much looking forward to my next clinic! :-)
Before I get into a discussion about Cysters and Fibros and our online CF community, let's fist pump at the fact I have done 10 nebulizer treatments and my stomach feeding every day since New Years. I EVEN jogged today, it was at 5am, but it counts!
The last couple nights I have been thinking about the Online Community CFers (ppl w/Cystic Fibrosis) have built. The terms Cyster ("sister" with CF) and Fi-BRO ("bro" w/CF) is what have we have started to call each other in online groups. It makes sense when I think about how much we share with each other online. I'm in 5 CF sites/ groups. I have gotten to know quite a few people this way, and have become good friends with some too!
It may seem weird that people can get to know each other so well online, but you have to remember CFers are discouraged to be around other CFers, since we can spread the "CF bugs" from one to the other. Therefore, I , like many, go online to share my negatives and positives about CF.
However, where it gets a little weird, is when I think about stuff I have shared on CF pages and not with non-CF friends that I see day to day. I tend to not want to drag them into my "CF stuff."
It's weird knowing they aren't part of that. I've been up the last couple nights just thinking about how much I want to keep getting healthier.
Take Sunday for example: I saw on one of our groups that a fellow Cyster (an upbeat, amazing girl that was my age) passed away. I also saw another "cyster" friend is on the transplant list. And I was reminded Danny's 28th Birthday would have been next month. It just made me realize how forunate I am and how much harder I want to push to keep myself as healthy as possible. Sunday was a huge motivation to keep me on the right track. I thought about it for a long time that night, then thought about more ways the CF community could reach out to each other while I was jogging that morning. Sometimes going for a jog makes me think better, and get my mind and thoughts out of the way of my sleeping. I will wake up wide awake thinking, so I go jog, clear my mind, and go back to sleep... It works. During my Jog, I thought of a lot of ways/ideas that I can take my personal experiences and use them in my career (Medical Social Worker) to help other CFers. I want to make sure CFers have the programs, meds, machines, financial help, and all other kinds of help that may be needed, in order to help them achieve their goals and maintain their health. All the online and social networking that is available today can help me to achieve this goal!
When tough days happen, it can be hard to think about everything. But the toughest thoughts or days always motivate me the most.
I'm going to continue to do all my meds (10 breathing treatments) and stomach feeding every day, while jogging when I can. (note: I have gone upa few lbs in the last week too) On the right track and very much looking forward to my next clinic! :-)
Hi Cheriz!!! I have enjoyed following your life and how you kick CF's butt. Thanks for sharing it with us.
ReplyDeleteSo you have to do 10 breathing treatments a day?!?! They cannot just be HTS and pulmozyme 5 times each......What meds are doing?
You are one very dedicated cyster my friend!!
Hi John,
ReplyDeleteThanks, I ennjoy following your blog too (cute Christmas photos of you and your family)! I do Albuteral, Hypetonic, Pulmo, Cayston (in morning). Then Albut, hypertonic, cayston (afternoon), and then those 3 again at night. = 10. When on Tobi instead of Cayston I do 9.
I haven't always been this dedicated. In college, I slacked off a lot and paid the price with my lung function. Now, I'm just trying to turn that around and help show others they can too!