Random Facts

Now that all of the posts for the may challenge is done, I have to think of different post ideas, so why not do random facts? You’ll walk away from this post knowing more than ever about random things that you probably never knew and never really needed to know.  How fascinating. Note the sarcasm.

Octopuses have three hearts, which you may remember from finding dory.

Butterflies can taste with their feet.

Polar Bears have black skin.

Koalas never drink. Their name means no water.

Potatoes were the first plant grown on space.

The inventor of the waffle iron did not like waffles.

You cant breathe through your nose with your tongue out.

You just tried the fact above.

A tomato is a fruit.

More people are killed by falling coconuts than shark attacks.

Giant Pandas can spend more than 14 hours a day just eating.

The unicorn is the national animal of Scotland.

Lego is the largest tire manufacturer in the world.

Earth used to be covered in giant mushrooms not trees.

I’m not sure if some of these are true, but the great google has led me to these facts and there is no harm in knowing about pandas, and giant mushrooms. Hope you liked this post and if you have any ideas for future posts please comment because I am running out of interesting posts to write.

 

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How many people have cf

Cf is a rare disease, no surprise there, but how many people have it?

There is around 70,000 people worldwide who have cf. 30,000 cases are in the U.S and 40,000 others throughout the world.

Cf is a genetic disease, which I’ve already gone over in previous posts. In order For people to be able to have cf, both parents must have a copy of a defective cf gene. These people are called carriers. Every 1 in 23 people are a carrier, which equals to 12 million people.

With that many carriers you’d expect more people to have cf right? Wrong.

Even if both parents have a copy of the gene there is still a 1 in 4 chance that their child will actually have cf, therefore making it a rare disease.

Hacks

Cf is a pain, we all know that, but there are some things to help. Here is a list of hack for people with cf or possibly any chronic illness.

Buy picc line shower covers from amazon instead of using press and seal.

cut the foot part off of socks to make a diy picc cover. Yes you can buy covers for piccs, but this is a much more affordable way, plus then you can have a variety of different picc covers. I have one that I like to call “the fancy one” and it was a decent price, but works well especially when exercising. It has a hole that you put the tube through so you don’t have to take the cover off every time you have to be hooked up to ivs. Here’s the link…

https://mighty-well.com/

Bring your own vest to the hospital. (Mine doesn’t provide the one I have so when I’m admitted I bring my own since it’s more comfortable)

When admitted have noise blocking headphones. I borrow my dads Bose headphones when I’m admitted and listen to a noise app during the night. It helps cut out noises and machines.

Have a pill container for am and pm. I used to have a pill container that was just one column, but I soon found out that having one with two is much easier. It made it a lot easier, especially to differentiate the pills I take in the morning to the ones I take at night.

Good days and bad days

We all have good and bad days. With an illness it happens too.

On good days I can go to school, do homework, and art. I still don’t feel 100%, but I am still able to function. I might have headache or some light joint pain, but nothing too bad.

On bad days I sometimes can’t go to school. I’ll have no motivation to do art or any hobbies, and barley do homework. When I have bad days it usually tends to be when I’m getting sick, or sometimes I just don’t feel good. On these days I have to take Advil more than once, for headaches and joint pain. You will most likely find this unicorn on the couch watching tv or on my iPad, just trying to sleep. I will be wearing pajamas and fluffy socks, cuddling with my dog.

I might have a bad day because of doing a lot the previous day. For example I might go to classes, hang out with my friends, and do homework, and maybe have a doctors appointment here and there. Doing a lot or even a little more than usual the day before can lead me to be plopped down on the couch for the whole day or two.

Clinic

I’ve written before about clinic, but I’ll go more into depth with this.

Clinic is where you go around every three months to see all of your doctors. During clinic I do pfts, sometimes blood draws, throat cultures, sometimes X-rays, talk to my cf doctor, nutritionist, nurses, sometimes physical therapy,.

With my nutritionist I talk about weight and height gain. She discusses gtube stuff with my sister, and partially me. Asks us how are acid reflux and stomach is. She says what percentile we are for both weight and height.

The physical therapist will talk about exercise, huff coughs, all that Jazz. We don’t see them that often since we see them a lot when we’re in the hospital.

You know how it goes with pfts. You go in this thing that has a machine hooked up to it and it tests your lung capacity and more technical terms I don’t know how to say.

My cf doctor talks about everything. How’s it been going, how are my symptoms, do I need to go or add any medications, etc.

Clinic can take anywhere from 3-6 hours. It takes a long time.

CFRD

Cfrd is Cystic Fibrosis related diabetes. One, is caused by the thick sticky mucus scaring the pancreas. This causes people to not produce a healthy amount of insulin. Additionally people with cfrd might not respond to insulin in the right way, which is called being insulin resistant.

It is common in people with cf especially as they get older.

Starting when people are 10 they have to get glucose tested once every year. Depending on where you get it done they might do it differently. The first time I got tested for it I did it in a place in my town. They drew my blood, then I had to drink this gross liquid that contains a lot of sugar. You have to wait around an hour before you get your blood drawn again. At this place that I got tested they drew my blood three times after being tested, and the person was horrible at it. Keep in mind I was ten and this lady said “I’ve never done this on kids before.” I never went to that place again.

Since then I’ve been tested 2-3 more times. I now get tested at my hospital where they do a much better job. They only draw my blood once before drinking that stuff and once after. So it’s much better. I do not have cfrd, but that can change.

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.

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.