Adjustment

Hey guys. I can't wait to get back to regular writings and talking more about other illnesses, but for now I'm taking a short break. I'm in the process of adjusting my medicines right now and am feeling REALLY bad. My brain is super foggy, and my arms are very weak (making it hard to blog). Between that and the general muscle weakness, extreme fatigue, and constant nauseous feeling, I think a break is necessary! Hopefully this adjustment won't take long and I can get back to regular blogging soon. Hope everyone is doing well. HUGS!

Brooke

Cystic Fibrosis

Scott and Jaime!

BACKGROUND:
Cystic Fibrosis, or CF, is a disease that is caused by a genetic mutation. It causes thick, sticky mucus to build up in the lungs and digestive tract. Some of the most common symptoms of CF include: delayed growth, fatigue, chronic congestion, recurrent pneumonia, and difficulty breathing. This terrible disease eventually worsens to the point where the person is disabled. Today, the average lifespan for a person with CF is 35 years.

PERSONAL TIES:
Growing up, I had never really heard of Cystic Fibrosis. I didn’t know anybody who had it and so it wasn’t something that I thought about often. However, when I began college I met a sweet girl named Jaime. Jaime appeared to be normal, and honestly if she hadn’t told me I don’t think I ever would have known that she suffered from this illness. One night we were out bowling and Jaime told me she had to leave. I asked her if she felt alright and she explained that the bowling alley was too smokey and not a good place to be for someone with CF. When I got home I looked up Cystic Fibrosis and tried to learn all about the causes and effects of this mysterious illness. Meanwhile, back home my parents were beginning to work with our local triathlon club and make friends. Through this they made friends with a man named Scott Johnson. Scott’s amazing story was revealed to us shortly after meeting him. He also suffers from Cystic Fibrosis and had received a double lung transplant, which allows him to continue to run triathlons and even an Iron Man or two! Both Scott and Jaime are AMAZING people who I love dearly. I admire their courage and their strength and often think about them when I am having a bad day or feeling sorry for myself. If you want more of Scott’s story, here is a link: http://www.youtube.com/watch?v=ngvkj3IAb-I

MYTHS ABOUT THE ILLNESS:
Myth: A lung transplant can cure CF
Fact: While a lung transplant can greatly help someone with CF, it is not a cure. A lung transplant may be useful in prolonging life or adding to the quality of life, but not completely curing.

Myth: People with CF look sickly and pale
Fact: Much like any other illness, CF manifests itself in different ways in different people. Most of the time you can not tell that a person has CF just by looking at them!

So there ya go! Some facts about Cystic Fibrosis. I would encourage you to look it up on Youtube or Google. There are some pretty great stories out there!

-Brooke
P.S.- cute story- when children get diagnosed with CF, they are told to call is 65 roses because it is easier to say then Cystic Fibrosis ;)

Let's Educate Ourselves!

My mom is 4’10’’ and not even 100 pounds. My dad is 6’3’’ and skinny as a rail. Needless to say, I’m certainly not destined to be a large person. Sometimes I hate being a girl, due to the extreme emphasis that is placed on women’s weight. If a girl is too skinny, she has an eating disorder, but if she is too large, she cannot be beautiful. I have ALWAYS been teased and judged about my weight. I can remember back in first grade when my teacher weighed me in front of the whole class. We were doing an activity about tall and short, and she measured the tallest person in the class and the shortest. Then we learned about big and small, she weighed me and then herself. It didn’t bother me at the time, but looking back on it, that’s just the first of many experiences where I was criticized for my weight.
When entering high school I was almost 70 pounds. People told me I looked like a wet rat, while others just yelled at me to eat a sandwich. I thought things like that only happened in movies like Mean Girls, but apparently it happens in real life too! So by 10th grade, I became fixated on my weight. I loved having the ability to have control over that aspect of my life.
Anyways, long story short, I have always been highly aware of my weight…sometimes trying to lose, and less often, trying to gain. But now I am at a point, where I physically feel like I cannot put on anymore weight and it’s kind of scary. I keep losing and am only 1 bad day away from being in the 80’s again.
All of this to say, an eating disorder is a serious illness and is not something to play around with. I think that there are many illnesses that are stereotyped or less commonly accepted and that’s why I want to take this week to write and inform about some illnesses that are less common or less known about. The more informed we are, the better we can try to understand what people are going through, right?

So, some blog topics coming up this week include: eating disorders, cystic fibrosis, Lyme disease, depression, Lou Gehrig’s (ALS), Down Syndrome, anxiety disorders, diabetes, and of course dysautonomia. All of these illnesses are near and dear to my heart, as I have known someone with or lost someone to each of these illnesses. Can’t wait to learn more and share it with yall. Hope everyone is well.

Brooke

Bucket List

So, a few years ago I made a bucket list for myself...like a list of things I want to accomplish throughout my life. I just found it today and it's so fun to go back and see that a lot of my hopes and dreams are pretty much the same, and some of them I have already even accomplished. So here it is...my bucket list...so far :)

1. send a message in a bottle
2. grow and eat my own vegetables
3. sleep under the stars
4. take a long roadtrip with friends
5. shower in the rain
6. get married at Orton Plantation
7. swim with the dolphins
8. leave the country
9. participate in a library rave
10. be kissed in the rain
11. dance in the rain
12. give birth
13. save a life
14. make an original music CD
15. change a life
16. go on a roadtrip with no predetermined destination
17. sing on a stage
18. read the whole Bible
19. learn how to play the guitar
20. have a porch swing
21. write a song
22. take a homeless person to dinner
23. vote in a presidential election
24. own a pig
25. give blood
26. do a corn maze
27. be in 4 places at once
28. write a book
29. learn to juggle
30. ride in a hot air balloon
31. create an extended family tree
32. find my real grandparents
33. be a maid of honor
34. create a popular youtube video
35. have multiple children
36. be in a movie/commercial
37. buy the Friendship House
38. ride a horse, bareback
39. try pot
40. adopt a child

Some of these things aren't possible, some of them are more possible then ever. I can't wait to see how things turn out in the future.

Brooke

One reason...

Here is the one reason I am not blogging today...

Dance Ramble

oh gosh. enjoy this piece of self humiliation. cute costume, right?

As my mom was cooking dinner, some great music came streaming from the kitchen. I had the urge to get up and have a dance party by myself, so I did. Bad idea. Immediate tachycardia and general weakness for the rest of the night. Oops! I remember a time in my life where dance WAS my life. I began taking dance classes at the age of 6 and kept on dancing until I was 15. I started off as a regular little girl who took dance lessons once a week and performed in the yearly recital. But by 5th grade dance had become so much more to me. I auditioned for a competitive group and made it in with the seniors. By the time I was in 6th grade, I had dance practice Monday, Wednesday, and Friday from 4:00-9:30, Tuesday, Thursday from 4:00-10:30, and Saturdays from 8:00-2:00. I literally would wear my leotard under my clothes to school and go straight to the dance studio. Getting ready in the mornings, I remember packing a lunch for school and a dinner for dance. We always had a 30-45 minute break at dance to eat or do homework. All of this madness was only during off seasons…during competition season, which spans from March to May, all of this time was spent at the studio, but Fridays after dance we would stay for costume fittings, before jumping in the car for competition weekends which lasted from Friday nights to Sunday nights. It was a lot of hard work and we trained hard, but it was so fun and exciting. I formed some of my deepest friendships at the studio, since we all had a common interest and spent so much time together. We laughed about things others wouldn’t find funny; the Dansco brand shoes someone bought by accident, the plum eye shadow someone had instead of violet, the fake eyelashes and the glue that stuck your eyelids together, the Vaseline on our teeth. We did crazy things for competitions….waking up at 5:00am to put in fake hair, makeup, Vaseline on our teeth, make sure you’re wearing the right tights, costume, and shoes. Is your hair in a low pony for this one or a high bun? Are you wearing your body tights, or the footless ones? Do you have an extra hair net, my 800 bobby pins ripped mine! Oh no, I left my red lipstick in my other dance bag! Mom, I have to pee but I’m wearing underwear, tights, bloomers, spandex, and a unitard! Do I have time to eat a granola bar before we go on next? What dance is next? I know, I know, remember to smile. Kissy faces. Do I start stage left or stage right? Did you see how many judges were out there? The stage isn’t as wide as we thought, shorten all moves! My costume ripped, my tights have a run, and I’m tired. My hair piece doesn’t match my hair anymore! Why is HE in the dressing room? Where is my mom? Is the stage marked? Mom, we’re gonna run out of hairspray and destroy the ozone, can you stop it!? ALL of these things and more can be heard backstage at any given competition. It sounds stressful, and it is. But it’s what bonded us girls, and sometimes guys, together. There is no greater feeling then sitting on stage during awards and getting a platinum award while your teacher and parents cry with excitement and pride. There’s no greater feeling then going out to dinner with your group after a 15+ hour day and feel like you have all of the excitement and adrenaline in the world. There is no greater feeling then running through the hotel and finding all the other dancers, when really, you should have no energy left. And as much as I hated it at the time, there is no greater feeling then going to school on Monday and hearing what everyone else did during their weekends, and when they ask you and you try to explain all the hair, makeup, dancing, adrenaline, and awards, they roll their eyes. It’s a bond. It’s a release. And there is no greater feeling. I remember going to dance some days and being so stressed about school, homework, or family, but once my feet hit the smooth, grey floor, it all went away. Nothing mattered while I was dancing. So, no, maybe I’m not the healthiest person. And maybe I can’t go back to doing double pirouette turns and scissor leaps across the floor. But that’s not what I’m looking for. I’m looking for the dance or music or something that will allow me to feel that same feeling, that in the moment…nothing else matters.

Sitting, Waiting, Wishing...

Things have been crazy. Serious chest pains and trouble breathing = no fun. I couldn’t get a cardiology appointment right away, so I’m on the cardio emergency list. This basically means that I have to be ready to go in at a moments notice. I’m thankful to be on the list but anxious about waiting. Hopefully I’ll get called soon. Hope everyone is well.

Brooke