Where to look for information

You can always google things. It’s good especially if you just have a simple questions. You can go to Cff.org. It stands for cystic fibrosis foundation and gives information about the disease along with how to help spread awareness and donate. You can look at different blogs. It’s good to read things from people’s perspectives.

My blog and my sisters(art and roses) are good things to read for information as well as perspective points. You can also find on our blogs stuff from the hospital.

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Ways to spread awareness

Since cf is not a common disease, not a lot of people know about it. Part of the reason I’m doing this may challenge is to hopefully spread awareness. Every year there is a cf walk. I typically try to go, but this year it was raining so I didn’t go, since it is outside. It’s a get together to donate and spread awareness about it. Different groups will be given recognition for their donations towards a cure. There’s food, and then people walk around a track. Some people bring there dogs. Sadly I can’t pet the dogs though since I don’t want to receive or spread any germs of other people with Cf.

My family does a yearly golf outing at our nearby gold course to help donate and spread awareness. Our family and friends will come and help out. Some donate, we do it where people golf and me, my sister, and dad go around and hand out raffle tickets and take pictures. Once everyone is done golfing we have a silent auction with gift baskets, and then do a raffle for golf gear since a lot of people like to golf.

For more information about cf walks or ways to donate or spread awareness go to cff.org

Daily Photography #6

There were some hot air balloons over near my house so I decided to take some pictures. I’m pretty sure the rainbow one landed in our neighborhood somewhere. Me, my mom, and sister were yelling hi at both.

Motivation

Having cf can lead to some frustration and causes my life some common difficulties. Therefore I do have times where I am not motivated. Sometimes it has to do with health issues. I can have a lack of motivation to do things, like shower, get out of bed, etc. Especially on bad days where I feel worse, I won’t want to do anything rather than sleep, but I have to push myself. I go to school, do homework. I have to stay on top of taking medications and doing treatments so my condition won’t worsen. I also have no appetite and underweight issues, so at times I won’t want to eat or don’t want to eat a lot. I have to push myself to eat more since if I don’t I will lose a considerable amount of weight which can also cause a decline in health.

I will also have problems with motivation towards art or anything I don’t have to do. For instance I don’t technically “have” to do art or my hobbies, unlike my school and medications, it’s a choice which sometimes I don’t choose. Either I’ll not feel well, or I just have no motivation towards doing anything, it does affect me. Art is something I like to do and sometimes it will be frustrating not doing it for awhile due to other things that I need to prioritize.

Coughing

So I cough, sometimes a lot sometimes a little. It’s just my body’s way of moving all that excess mucus. Ya it sucks, but I can’t do anything about it.

I cough more with strong scents or smoke.

It’s annoying, since I am in school I can get self conscious about coughing, especially if it’s a worse day.

In public sometimes people look at you. I’m not contagious chill.

I cough especially more when I have a lung infection.

Problems throughout the body

Since cf is a multi organ disease there is many aspects and problems throughout the body.

There is a build up of sticky mucus in the lungs that causes frequent lung infections due to bacteria and germs building up in the lungs and not being able to pass.

People with cf have a lack of enzymes due to mucus that is treated by having to take enzymes before eating. If not it can cause stomach aces, pains, etc.

There can be sinus issues, heart, kidney, liver, and bone issues.

People can get osteoporosis at a young age and arthritis. Some people end up getting diabetes from the mucus which can scar The pancreas.

People can get spine issues also.

Health Update

I’ve been having more problems. Breathing problems, feeling pretty crappy ya know the fun stuff. I went to my doctors on Friday and got pfts done. She said they were down a little bit.

She put me on an antibiotic for a lung infection. I have an appointment scheduled for a month out for more pfts.

We’ll call back if I get worse or if the medicine doesn’t work.