hole in my heart

There’s a hole in my heart. Okay, yes, both literally and figuratively. However these holes are very unrelated. Physically, my heart is flawed. I have an ASD, or Atrial Septal Defect. Basically it is a congenital heart defect where the wall that separates the upper chambers of the heart doesn’t close all the way. A hole. I already have POTS which makes my heart beat abnormally fast anyways, but other then that I really have no other symptoms. I meet with my cardiologist kinda frequently in order to check the flow and the strength of the heart wall, as well as checking for clots that might travel through the little hole.
Figuratively, I have a HUGE hole. I know it may seem dramatic, I know, but my dog died on Tuesday. It is so strange, everything reminds me of him. Being an only child, he was the closest thing I had to a sibling. He had been around through elementary school, middle school, high school, and almost all of college. He had been around through all of the hard times in the family and all the illnesses. It’s strange to not have to close the bathroom door when I leave. It’s weird to not have a big, brown lump at the bottom of my bed when I’m sick. I miss my Bailey. I think it’s a combination of missing my dog and the fact that all of my friends have gone back to school, leaving me home and very very lonely. I’ve picked up a good book and think I’m going to spend time drawing, reading, and sleeping. Haha. I hope you all are doing well. I plan on getting better about more useful blogging, rather then just whining and moaning.

-Brooke-

little girl, BIG world

Hi guys. I know I have been pretty MIA recently. Truth is, I have had a rollercoaster of a ride the past few days. I got pretty sick and ended up passing out and falling down the stairs. Needless to say, I've been pretty sore. It was also my best friends 21st birthday, so I tried my best to help her celebrate (and maybe overdid it a little bit...no I didn't even drink). So, I've been doing a lot of sitting at my computer and playing around online.
This may sound random, but trust me, it ties in eventually...but I have recently had the pleasure of meeting and talking to Sophia Bush. She is an AMAZING woman with such a strong spirit and desire to make this world a better place. I have always been strong in my beliefs, but Sophia has really taught me to not just think on these beliefs, but ACT on them as well. A few big things that have really been big in my life, or some things that I am very passionate about include the oil spill and cleanup in the Gulf, as well as The Ronald McDonald House organization. Soph is VERY passionate about the gulf and is even training for a half marathon here in Wilmington in November to raise funds.
So basically, what I'm getting at is that even though I may be stuck on a couch or in bed because of my illness, I can still make a difference in this world. One of the things I desire the most is to change this world for the better. I think that it is one of the COOLEST things in the world to be a part of something bigger than yourself. No matter how big, small, tall, short, old, young, sick, or healthy you are, YOU can make a difference. How cool is that?? I would love to do a benefit CD or concert, or something like that. Just brainstorming some ideas. I hope that the inspiration that Sophia's provided me can be passed on to you guys!

For more ways to help, check out Crowdrise.com. You can also collect pop tabs and mail them in to the local Ronald McDonald House to help chronically and seriously ill children and their families!

Love to you all!

Brooke

Sorry!

Hey guys. I am the worst blogger ever, I haven't updated in a while. I've been so busy, I feel like my head is spinning in 70 different directions. I worked on the set of One Tree Hill last week for 13 hours each day. Apparently, that's not something someone with POTS should really do. haha. I have off work until Thursday though, so hopefully that will be enough time to catch up. I'm a very stubborn person and don't like to limit or restrict myself, so since being diagnosed with POTS I have been working on seeing and accepting my limits. Right now I'm at the stage where I see my limits, I see the line I shouldn't cross...but I haven't quite gotten the acceptance part, I still cross that line and wonder why I feel like crap the next day.
It will all be worth it when my episodes air on the CW in September? probably not. but for now I'm having fun and doing as much as I can (and more)!

Hope you all are well. I really am super thankful for a community of people who are so understanding. Praying for you all.

Love!

-Brooke

Lights, Camera, Action

Lights, Camera, Action...it's not that glamorous. It's actually more like. Rolling, Sound, Background, Action. Cut, Reloop! I've spent the last 3 days working on the set of One Tree Hill. It's really fun, but super exhausting, which is why I haven't been updating. My call time for tomorrow morning is 6:00am for hair and wardrobe. Surprisingly, and with the help of my new medicines, I have been feeling pretty good the past few days, despite the exhaustion. However, I know in the next few days I know I'm gonna have a major crash. Oh well. It's fun now getting to hang out with Sophia Bush, Austin Nichols, Kate Voegele, Lisa Goldstein, Jackson Brundage, Stephen Coletti, Bethany Joy Galeotti, Shantel Van Santen, Jana Kramer, and Robert Buckley...and those are just the actors. I've have a blast with the crew and extras and am now know on set as the "dancing girl", since I'm always rocking back and forth between takes. haha! When things slow down, I will get back to regular blogging, but until then, I have to go get as much rest as possible!

Love to you all!

Brooke

Eating Disorders...very personal

<-- Me at my lowest weight...

I have been very skeptical about writing about this next topic as it hits very near to my heart. But it is something you can’t deny. Here are the facts:
1 in 5 women struggle with an eating disorder or disordered eating. Eating disorders affect up to 24 million Americans and 70 million individuals worldwide. At least 50,000 individuals die each year as a direct result of an eating disorder. Read that again…50,000 people, lives, sisters, mothers, daughters, cousins, brothers, friends. How about this…according to a recent study, over half of females between the ages of 18 and 25 would prefer to be run over by a truck then be fat. This is a serious illness that affects MANY individuals. Although there are many different types of eating disorders, the two most common types are Anorexia Nervosa and Bulemia Nervosa.
Anorexia is characterized by refusal to maintain a healthy body weight and an obsessive fear of gaining weight due to a distorted self image. Signs of anorexia include obvious, dramatic weight loss; soft, fine hair growing on the body; food rituals; temperature intolerance; depression; baggy clothing; swollen joints; and abdonimal distention. The main difference between Anorexia and Bulemia is that a person suffering from anorexia restricts and diets, while a person with bulimia often binges and purges, or sometimes just purges.

Personal Connection:
Ever since I was young, weight has been a big issue in my house. I have always been underweight and seemed to grow up to find my identity in being “the small one” or “little Brooke”. When I grew up and went through the awkward middle school phase, I hit a growth spurt and grew taller. I was now average height, yet still on the skinny side. I longed to be “little Brooke” again, and having control wasn’t half bad either. So I began dieting. Secretly, of course. I started running every night after dance practice and eating more salads and less protein and fat. By the time I was in high school, I was skipping meals and losing weight. My mom assumed it was from stress and anxiety and continued to encourage me to join the cross country and track teams. I loved the feeling of having control over my diet and the results I saw. Things were bad, but I hit my low during my sophomore year of college. During the span of a few months my friend killed herself, 3 of my grandparents died, one of my friends died of cancer, and I was forced to medically withdraw from school after finding out about a hole in my heart. Needless to say, the stress was more then I could handle and I began a dangerous habit of skipping meals and purging. I dropped weight, lost friends, was constantly exhausted, and was basically in and out of conciousness for a year. I distinctly remember a week where I went 8 days in a row with only drinking water and eating a single cough drop. Throughout the whole thing (12 hospital trips included), my parents somehow stayed in denial about my problem, making it hard to get treatment. However, with the help of some wonderful friends, I eventually got to a doctor and nutritionist a few times a week. While I gained some weight back and got a much healthier mind set, I really do believe an eating disorder is something I will continue to struggle with for the rest of my life. Somedays are harder than others, but I really do see the importance of healthy body image and eating habits.

Myths:
-Eating disorders do not only affect women. Men can be affected by these disorders too!
-You cannot just tell someone with an eating disorder to “just eat”. Most of the time it is not even about eating, as much as it is about control.
-People with eating disorders are not stupid and attention seeking. It is a real medical problem that needs to be treated with respect and sensitivity. Imagine looking in the mirror and seeing yourself with green hair. And then imagine everyone trying to tell you that your hair is a beautiful blonde, brown, or red color. Yet, every time you look in the mirror, you see the green hair.

Eating Disorders are VERY real, VERY dangerous, and often recognizable and preventable. If you or someone you know has an eating disorder or any disordered eating patterns, don’t be afraid to seek help. If there is one thing I have learned it is that eating disorders are not as glamorous as they are made out to be by magazines or Hollywood.

I have never been very vocal about my past with this condition, but if it can help just one other person, then it was worth it.
And remember: “To be nobody but yourself in a world which is doing it's best, night and day, to make you everybody else, means to fight the hardest battle, which any human being can fight, and never stop fighting.”

-Brooke

ALS/Lou Gehrigs

Rest in Peace Jerry Chatlos.

ALS has many different names. ALS is commonly referred to as Lou Gehrig’s disease and stands for Amyotrophic Lateral Sclerosis. ALS is a disease of the nerve cells in the brain and spinal cord that control voluntary muscle movement. Symptoms of ALS usually don’t develop until after age 50. Loss of muscle strength and coordination gets eventually worse, making the person unable to do routine tasks such as going up and down stairs, getting out of chairs, or swallowing. Often breathing and swallowing muscles are the first muscles affected.
Symptoms of ALS include difficulty breathing, difficulty swallowing, choking, head drop, muscle cramps, muscle weakness, paralysis, speech problems, drooling, muscle spasms, and weight loss. There is no cure for ALS, however the symptoms can sometimes be treated using medicines. The drugs are used to prolong life, but do not reverse or even stop the disease from progressing. Medical interventions are also used to improve the quality of life. Because choking is common, patients may have a tube placed in their stomach for feeding. Breathing assisting devices are used as well towards the end of life.

Personal Connection:
When I was 15, I had my first job working as a summer camp counselor at an art camp. One day, a man walked in to come and pick up his two children from camp. Nadia and Sandro were 8 years old and beautiful, well-behaved children. When their father walked in, I immediately knew there was something wrong with Jerry. He walked with a slight limp and slurred his speech. Not knowing what was wrong with him made me slightly uncomfortable, but we ended up having a very nice conversation. I learned that him and his wife just moved into town from Atlanta in order to be closer to family, as he was just diagnosed with Lou Gehrig’s disease. Believe it or not, their family had actually just bought the house 3 doors down from me. Because Jerry’s condition was worsening, I offered to help out by picking the kids up for camp in the morning and taking them home in the afternoon. I ended up babysitting these children and spending time with this family for years to come. As Jerry’s conditioned worsened, him and his wife would have date nights at home while I babysat the children. Often times I was babysitting the children and Jerry as well. I took him to the grocery store and drove him to the bank. I helped him help his son to build a car for the local soapbox derby, and I watched with tears in my eyes as he got fitted for a special wheelchair. I helped him on and off of the toilet and spoon fed him blended food. I felt a mix of emotions when Jerry passed away in May of 2010. He was a great man and a wonderful father, but knowing that he wasn’t suffering anymore was somewhat of a relief. I watched Jerry go from an accomplished opera singer and very vocal and active father, to a small man who lost his ability to speak and eat. By the end of Jerry’s life, he had recorded messages that he would play, but was no longer able to speak. And he had a feeding tube inserted because he could no longer swallow. Although Jerry’s muscle tone and independence deteriorated, his strength and courage never wavered. I am happy to have known Jerry and feel like I learned so much from his incredible life.

Common Myths:
-It is often believed that people with ALS are mentally challenged or retarded. However, the brain function of someone with ALS is not altered at all. Mentally, they are fully functional and capable individuals.
-ALS is NOT contagious. It is a genetic defect that cannot be spread by contact.

For more information about all things ALS, visit http://catfishchapter.org/ .

Get informed!

-Brooke

Lyme Disease

Lyme disease is a bacterial illness. This disease is spread by ticks who carry the disease and can cause abnormalities in the skin, joints, heart, and nervous system. Lyme disease affects different areas of the body in varying degrees as it progresses. The site where the tick bites the body is where bacteria enters through the skin. As the bacteria spreads in the skin and away from the bite, the infection causes a reddish rash and “flu-like” symptoms. Lyme disease can be described in 3 phases. In the first phase, it is a early localized disease with skin inflammation. In phase 2, it is an early disseminated disease with heart and nervous system involvement. And in the 3rd late phase of this disease, motor and sensory nerve damage are involved. Patients often cannot recall the tick bite, as the ticks can be as small as a period in this sentence.

Lyme disease signs and symptoms greatly vary because Lyme can affect various parts of the body. General symptoms include a rash, flu-like symptoms, fever, chills, fatigue, body aches, migratory joint pain, and neurological problems. If caught in the early stages, antibiotics can often be used to treat Lyme disease, however late stage Lyme disease can be more difficult. Years of antimicrobials and more complicated treatment plans are necessary to treat late stage Lyme disease. Often when treating late stage Lyme disease, something called a Herxheimer Reaction occurs. This happens when the bacteria is killed off and releases toxins into the body. These neurotoxins and endotoxins effect a persons brain and organs, causing symptoms ranging from seizures, migraines, pain, dizziness, heart problems, and much more.

I do not know much about Lyme disease, and I have never physically met someone with this disease. However, through my own illness, I have been blessed to meet a wonderful and strong girl named Candice. Candice is affected by late stage Lyme disease, and yet she is one of the strongest and bravest people I know. She takes life one day at a time and finds joy in the little things. She has great things to say and knows WAY more about Lyme disease then I will ever know. If you get a chance, please check out her blog at http://infectiousoptimism.blogspot.com/ .

Take care and I will blog again soon!

Brooke

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

Quotes

So, it’s about 11:30pm and it’s my first time really out of bed today. Haha! Oh well…some days are better than others, right? So needless to say, I’m not feeling super original or creative today. I think for this post I’m just going to leave you guys with a few of my favorite quotes (I’m a bit of a quote junky).

-I have an overwhelming desire to be part of something big.

-Wilmington is just a place somewhere in the world. Maybe it’s a lot like your world. Maybe it’s nothing like it. But if you look closer you might see someone like you. Someone trying to find their way, someone trying to find their place. Someone trying to find their self. Sometimes it seems like you are the only one in the world who is struggling, who’s frustrated, unsatisfied, barely getting by. But that feeling is a lie. And if you just hold on, just find the courage to face it all for another day, someone or something will find you and make it all okay. Because we all need a little help sometimes- someone to help us hear the music in their world, to remind us that it won’t always be this way. That someone is out there. And that someone will find you.

-You just have to know. And when you don’t know? No one can fault you for it. You do what you can, when you can, while you can. When you can’t, you can’t. (I have found this quote SO comforting)

-We are adults. When did that happen? And how do we make it stop?

-At the end of the day, when it comes down to it, all we really want is to be close to somebody. So this thing where we all keep our distance and pretend not to care about each other, is usually a load of crap. So we pick and choose who we want to remain close to, and once we’ve chosen those people, we tend to stick close by. No matter how much we hurt them, the people that are still with you at the end of the day-those are the ones worth keeping. And sure, sometimes close can seem too close. But sometimes that invasion of personal space is exactly what you needed.

-It's like so much awful stuff has happened now that the bad stuff is what seems normal and normal just seems weird. But I'm not falling for it! Bad is not normal. Normal... normal's not weird. (sometimes I have to repeat this to myself over and over again!)

-You do this thing where you stop making plans. Because you had plans but then they fell through and your plans disappeared so you just... I just try to get from sunup to sundown. That’s as far into the future as I can handle. I have to be fine with that. (I know all my chronically ill friends understand this one)

-We could all use a little hope sometimes, you know? That feeling that everything is going to be okay, and that someone is there to help make sure of that.

-Being happy isn’t having everything in your life be perfect. Maybe it’s about stringing together all the little things- making those count for more than the bad stuff. Maybe we just get through it and that’s all we can ask for.

-There is no dishonor in losing the race, there is only dishonor in not racing because you are afraid to lose.

-Things will happen in your life that you can't stop... But that's no reason to shut out the world... There's a purpose for the good and for the bad...

Ok, well now that I have overloaded yall on quotes, I’m gonna stop. And tomorrow when I read this post back, I’m probably gonna be sad that I posted something so pointless…but for now I’m content!

Goodnight!

-Brooke

LIVE

Wahoo! It’s that time of year again. Living in a small, beach town in North Carolina, you would think life would be pretty boring around here…and it is, most of the time. But this is the time of the year where directors, producers, makeup and camera men, actors and actresses all flock to my little town to film TV series or movies. It’s been pretty clear that the town is preparing for it’s big arrivals. Sophia Bush’s plane arrived today, and Fall Out Boy was spotted at a local coffee shop. A lot of things have been filmed in Wilmington (Matlock, Blue Velvet, The Secret Life of Bees, Eastbound and Down, Little Britain USA, Nights in Rodanthe, Bolden, One Tree Hill, Surface, Dawson’s Creek, Domestic Disturbance, Weekend at Bernies, Firestarter, A Walk to Remember, I Know What You Did Last Summer…plus more!) However, my favorite is One Tree Hill. I love being able to run out and do errands (when I can) and run into Lee Norris at the grocery store or Sophia Bush at church. Amongst feeling pretty crappy the past week, I did get a chance to audition for a commercial, so hopefully I will find out whether I get the part or not by tomorrow.
Anywho, I found a quote today that I really love. Jonathan Swift once said “May you live every day of your life”. Goodness knows there have been days where I wake up and look forward to going back to bed and look forward to the next day, but how many times do I actually LIVE each day. I can live even when I’m sick; I’m alive and even though I may not be in the best of health, I CAN live…and I WILL live. Living may look different each day; some days it might be just laughing at something on TV or making someone else smile, and some days it might be going out and hanging out with friends. I guess that’s part of the excitement of life…you never know what each day will bring. But I do know that I have the ability to LIVE. And I hope you guys take every opportunity to live each moment!
Hugs to you all!

-Brooke

P.S.- for more on a person who REALLY lived every moment, visit ivestrong.com. Sydney Ives was a young girl battling cancer, and yet somehow through all the hard times, she managed to keep a smile and bless everyone in her life.

Blessings and Brain Fog

As much as I hate what dysautonomia has taken from me, I am SO blessed with so many good things as well. I’ve been home alone all weekend (my parents are usually here) and pretty sick and it has definitely taught me to not take the little things for granted. I love my parents, I get so annoyed with them sometimes, but I really do love them. I never realized how much energy it takes to live on your own. I usually have my parents to pick up my slack when I’m sick, which I am so grateful for! I’m also so thankful for the friends I have made from having this illness, either through face book or the dysautonomia connection…I have so much support and feel much less alone because of them. Someone always manages to brighten my day, whether it’s an IM from David, a cute video Kyli made, a sweet and cheerful post from Candice, or a funny response by Frank, it really does make me feel like there are other people out there who understand…and honestly, even though I haven’t met any of them, they are some of the strongest people I know!
So, because I’m stuck in super brain fog, I’m gonna finish this post with some Pits/Peaks of my weekend.

PITS:
-feeling super nauseous all weekend long and not being able to eat.
-losing weight because of the nausea.
-having a sick dog.
-the heat.
-passing out while home alone.
-just feeling down/sad.

PEAKS:
-a friend came into town and spent the night.
-watched “Remember Me” (a GREAT movie, P.S.)
-auditioned for a commercial
-successfully ate a non-dairy milkshake without feeling like vomiting.
-trying and liking a new flavor of Gatorade
-reading a good book. (The Weight of Silence by Heather Gudenkauf).

Anyways, I know that was a super random post, but I figured it was better then nothing. I hope everyone is having a good weekend.
Sweet Dreams!

-Brooke

Vent Sesh.

So, I need to vent. I hate venting because I feel like I’m being annoying, whiny, and needy and I know there are other people way worse off than me, but sometimes I just need to vent. I have been feeling CRAPPY. It’s been a constant battle these past few days between the weakness, nausea, and exhaustion. I’m so nauseous that I can’t eat anything without feeling like I’m going to be sick, but because I’m not eating much, I feel so weak…not to mention absolutely exhausted. My head is spinning, heart pounding, and it’s hard to get a good breath. Now, I wouldn’t wish these feelings on anybody ever, but sometimes I just wish I had someone who knew exactly what I was going through. My mom is trying to understand, but she just can’t. I think tomorrow I’m going to go to the hospital to get some IV fluids. I’m hoping that will help to get me some energy and maybe curb the nausea. Who knows? I hope everyone else had a good week!
Hugs!

-Brooke

Just Say NO!

I’m a people pleaser. I’m afraid to speak my mind or confront people. It’s difficult for me to say no. I’m an idealizer. I seek out powerful, accomplished people to look up to and idealize them by putting them on a pedestal. I please to get approval and love; I please for fear of judgment; I please to be needed; I please for self-esteem. I love being needed and I hate when people are mad or upset. But sometimes not being able to say no is a bad thing. I find myself stressed, overworked, tired, and emotionally and mentally drained. With POTS, I’m learning more and more that it is okay to say no. It’s still a struggle, but I’m working on it. And hey, the first step is admitting you have a problem, right?
Well here it is…
Hi. My name is Brooke. And I am a people pleaser…but I’m working on it.

-Brooke-

Whirlwind!

awesomely cheesy red, white, and blue attire!

Well, it certainly has been a whirlwind of a week! I finished summer classes last Wednesday and had people coming to town on Friday, so I definitely didn’t have a ton of time to rest up. On Friday my old roommate came to town, so we hung out, ate, played mini golf, and just kinda relaxed. On Saturday my other friend came in to town to help celebrate the 4th of July and my birthday! Me and my 4 friends ended up having a lot of fun, which was especially great because 2 of them are old friends from home, and the other 2 are friends from school. Saturday was pretty good; I felt fine even though my blood pressure was a miserable 70/35. However, by dinner time I was out for the count with dizzy spells and blacking out, I ended up passing out after making it to my mom’s bed. After I came back around and ate some dinner, I was feeling a little better, but we rested and watched movies the rest of the night. The next day was the 4th of July and let me just tell you, I love this holiday. I love America, I love lighting things on fire, I love barbeques and grillin out, I love the laid back atmosphere, and I love that it’s the day before my birthday. The whole family, plus friends, ended up going to a cookout at my best friends house, decked out in our red, white, and blue gear…did I mention that the awesomely tacky attire is another reason I love this holiday? After the cookout was time for the fireworks, which I LOVE. We usually drive downtown to see them, but traffic is crazy and so this year we decided to go to an old cemetery and watch them. We used to do this all the time when I was a kid, because it’s still a great view with way less traffic. BUT not this time. The trees must have grown or something, because there was absolutely no view. At all. So we spent the evening star gazing and searching for fireworks. Haha! Then we rang in my birthday with the ultra-patriotic red, white, and blue jell-o shots. For all those POTSies out there, in case you didn’t already know, alcohol + POTS = not good. It was my 21st birthday though, so I wanted to try it out. Bad idea. I was up all night with tachycardia through the roof, tremors that shook the whole bed (said my mom), sweating, and nausea. So I learned a lesson that most people don’t learn until later in life…”I’m never drinking again”.
Anyways, between school ending, 4th of July, and my birthday things have been super crazy around here! Not to mention, I have a commercial audition on Thursday and people coming into town on Saturday. Hopefully I will get some rest before then!!
*On a more serious note, my POTSy friend Colleen is going through a really hard time right now. Her dad passed away yesterday. So PLEASE keep Colleen and her family in your thoughts and prayers. I know this is a really tough time for her and I can’t even imagine what she is going through.
Hugs to you all!

-Brooke-

One word...

One word to explain why I haven't been posting.

FINALS.

I'll be done on Thursday and back to posting more, promise!

-Brooke-

I'm BAAACCCCKKKKK!

I’m BAAACCCKKKK! And boy am I exhausted! I had a wonderful few days in Charlotte visiting friends. I stayed with my old roommate/best friend Lindsey. It’s so funny how alike we are and it’s great that she is so understanding when I need a nap or just to rest. I had lunch with my old Bible study leader, Amy. I haven’t had much time to catch up with her since she got married so it was great to be able to reconnect. Then I hung out with my friend Wendy. It’s always interesting spending time with Wendy; she is a counselor, so a lot of times her analytical side comes out. She has helped me through some of the toughest times in my life. I also got to see my friend Amanda who had been gone in Ghana for a semester and my friend Jamie, who I love SO much!
Anyways, I had so much fun spending time with friends and laying out on the lake, but I’m EXHAUSTED. I probably pushed it a little too far and will be paying for it for the next few days. Sadly, I have finals coming up this next week, so I’ll need to rest up for that!
Ok, I can’t focus anymore so I’m gonna go. Promise I’ll update more interesting things soon!
-Brooke-

Fathers Day and other ramblings...

So today was Fathers Day. I am lucky to have the best father in the whole wide world who loves me very much. I think it's kind of cool because my dad was adopted and doesn't know who his real parents are, so in this world I am the only person my dad knows who shares some genes with him. We always joke that it's just us two carrying on the crappy genes. We had fun today, he let me sleep in while he went to the beach. I got 14 hours of sleep last night and was still tired today. haha.
Then we opened presents and went downtown to go antique shopping and get ice cream. We ended up doing more driving around and looking at houses, cause it was just so darn hot outside. Then we came back to the house and I worked on homework before we went out to dinner. It was a great day and I think he really enjoyed it! Then I had to start packing. Blah. I am going to Charlotte for a week to visit like 5 million people (really only 4). I'm really excited, I'm just really nervous too because it's my first big roadtrip without my parents while having dysautonomia. It's only a 4 hour drive, so hopefully I'll be okay, but it still makes me nervous.
Anyways, I feel pretty gross right now, with a POUNDING headache where it feels like my brain is going to leak out of my skull. Super high heart rate and very low blood pressure (bp is 80/60 and heart rate is 148). NO FUN.
Anyways, I hope everyone had a good weekend and is feeling well. I'm thinking about all my dysautonomia friends and praying for good weeks for everyone. Goodnight!

-Brooke-

P.S.- Here is a blood pressure chart for what is "normal".

Life gave me lemonade!

One of my absolute favorite things to do as a kid was have a lemonade stand. I remember going to the grocery store with my mom to buy the lemonade mix and then coming home and mixing it up in a big pitcher. I would set the pitcher in a cooler of ice so that the lemonade didn’t get watered down. Then my best friend would come over and we would spend at least an hour making signs. We used stickers and bubble letters, and even balloons sometimes! We would then march up the street and post the signs on the stop signs before running back to the house to set up the stand. We sat in little lawn chairs under an umbrella and set up my mom’s card table with the drinks and money box. A delicious glass of lemonade was only 50 cents, and we were sure we were going to get rich of off the sales. I remember that as each car drove by without stopping, our hearts sank a little bit. I think the most we ever made in a day was $5.00, which when you split two ways, not very much. But it didn’t matter, we felt accomplished, we ended up with more money than we started with, and we had fun.

I remember the disappointment I felt when my mom told me I was too old to have a lemonade stand. But then something so fun happened yesterday…
I was driving to the grocery store to pick up some honey and peanut butter (a terrible thing to run out of). And on my way, I passed 3 kids on the street who were having a lemonade stand. I could only imagine how much fun they were having, despite the near 100 degree temperatures. They had made elaborate signs with glitter and everything, and the price was $1.50 for a glass of lemonade. I pulled the car over, knowing that, although I had just chugged a HUGE thing of Gatorade, I had to stop and buy some lemonade. I got out and approached the kids, who were clearly super excited! As they started pouring my lemonade, we talked for a minute and the little boy informed me that 50 cents of every dollar was going to the Humane Society. What a cool kid! He was going to save up the rest of his money for a Nintendo Wii. As I bought my lemonade, I found great satisfaction in knowing how excited I was making that kid.
I was so sad when I couldn’t have a lemonade stand of my own, yet I was so happy to be old enough to have enough money to buy lemonade from someone else. This reminded me of other situations in life and especially the whole “when one door closes, another door opens” philosophy. Just because I’m growing up doesn’t mean I can’t have fun anymore, it’s just different fun. And just because I’m sick doesn’t mean I can’t do anything; it just means I do different things.
Anyways, I know that was super random, so props to whoever read all the way through it. I hope everyone is well today and is having a great weekend. Hugs!

-Brooke-

p.s.-here's a great song that I have always loved. very relavent!
http://www.youtube.com/watch?v=73aMawhB0TE

So smiling makes you feel better?

So, I was looking for an inspiration quote to start off today’s post, but I came across some that were more interesting…

The first quote: “You can set yourself to be sick, or you can choose to stay well” – Wayne Dyer

Welp. All I know is that this Wayne Dyer character never had a chronic illness. Last time I checked, I didn’t set myself to be sick, and if I could, I would definitely choose to be well. But I don’t think that’s gonna happen any time soon! It’s things like this that make it harder for people with chronic illnesses, especially invisible illnesses, to get credibility. I can’t count how many times I’ve heard “you’ll feel better if you have a positive attitude” or “just will yourself to feel better”. I do understand that having a positive attitude is good and can be beneficial in ways, but it usually doesn’t stop my heart from racing or my blood pressure from dropping. My parents are the masters of “drink some water and think happy thoughts”. If anyone has a more positive take on this quote, please let me know. Maybe I’m just misinterpreting?
Anyways, I know a lot of people who are going through a lot of hard things right now. Some are sick, physically, and some are just mentally and emotionally drained. I’m not one for peppy speeches and I know sometimes you just need to have a bad day, but I did find a quote that I LOVE! It says “Every day might not be good, but there is something good in everyday”. Now believe me, I know for sure that sometimes days are pretty bad and just all around sucky, but if you think really hard (REALLY REALLY hard), there is usually something good that came out of that day; even if it is one small, tiny thing.
The other day I had one of these no good, terrible, horrible, very bad days. My pressure was low, my pulse was high, we thought we were going to have to put my dog to sleep, my family was driving me crazy, my car broke down. It was just one of those days where nothing could go right. I decided to give up for the day and head to my bed, but when I got there I found a pretty, white Gardenia on my pillow. My dad knows that gardenia’s are my absolute favorite flower, so he went outside and picked one for me and left it on my pillow. And, although my day was super crappy, in that minute that I saw that flower, that small gesture of kindness, my day was okay.
So, whether you’re having a really great day or a really terrible day, try to make time to think about one thing that was good in your day. I’m not saying that this is going to cure you, or make you feel better, but it might make you smile, even if only for a second.

-Brooke-

From Catterpillar to Butterfly...

“and just when the caterpillar thought the world was over, it became a butterfly…”

This is has always been one of my favorite quotes. When I think of a caterpillar, I think of a little helpless insect who wraps himself up and hides from the world for a few days. This may be seen as weak, but it is during those days that the caterpillar is wrapped up and hiding from the world that it is doing its hardest work. The caterpillar is shedding its old skin and transforming into a beautiful butterfly. When the caterpillar emerges from its caccoon, it is no longer a frail and helpless bug, but a beautiful and elegant butterfly. I think that the butterfly is the ultimate symbol of strength and transformation. Yet, before a caterpillar can become a butterfly it must shed its skin, becoming completely vulnerable to the world. And once the butterfly emerges from the caccoon, its wings are wrinkled and stuck together.
I think it’s the stages that captivate me the most. Something starts off so small and weak must become more vulnerable and weaker in order to become beautiful and free; and even then, the transformation is not fast. Sometimes I feel like a caterpillar, and other times a butterfly.
I think one of the many things I’ve learned from this is that transformation takes time and that in order to get better, one must first become more fragile and vulnerable. Much like the caterpillar, I am often perceived as weak for having to stay home and lay in bed; however, I would rather think of it as going into my caccoon so that I can emerge stronger! I have learned a lot from Dysautonomia, but it has also taken much from me too. Soooo, for the rest of this entry I’m going to do ‘pits & peaks’.

PITS of Dysautonomia (I won’t name them all)
-I was having a conversation with my mom about me joining my school’s acapella group since I love to sing so much, but we realized that I run out of breath too quickly and I can’t stand for that long.
-I miss walking the loop. I live at the beach and we have a 3 mile loop around the beach. One of my favorite summer activities used to be walking the loop after dinner with my best friend and her dog. I tried again this summer and it didn’t turn out so well.
-Last summer I used to drive from my house to Charlotte to Greensboro and back whenever I wanted. From my house to Charlotte is about a 5 hour drive, but it was really no problem. I’m going to attempt to go visit my friend in Charlotte next week, but am super anxious about the drive. I now have to plan my sleep schedule days before so that I will have enough energy to drive for 5 hours.
-I miss being a good babysitter. I think I’m still pretty good, but I used to be great. I never have enough energy to plan and do activities with the kids, so I usually resort to a movie or a small arts and crafts project.
-friends, energy, standing in the grocery line…the little things I miss.

PEAKS of Dysautonomia
-I have gotten to watch SO many good movies while I’m on the couch. (Rent, My Sisters Keeper, The Secret Life of Bees, Precious, A Walk to Remember, The Road…so many good ones!) Also, I am now addicted to TV shows like The Bachelorette, Toddlers and Tiaras, Kourtney and Khloe Take Miami, and House.
-Salt! And a lot of it! I have always always always loved putting salt on my food, but everyone always made fun of me. Well now I get to put salt on everything and no one can stop me!
-I have found that people, strangers, are usually nice and can be the most encouraging. I have found a lot of support on The Dysautonomia Connection (http://thedysautonomiaconnection.org/). People who are total strangers have all been responsive to my silly questions. Thank you Kyli, Shannon, Emily, David, and plenty of others! It has been fantastic to have support.
-It has taught me to appreciate the small things. Being able to eat a meal without feeling sick, being able to stand in a grocery line, being able to get through a day without a nap, and being able to lay down and still be able to breath, being able to walk out to the mailbox without going into tachycardia…it’s the little things that I always took advantage of that I am learning to appreciate.

It’s the small victories, and I’m okay with that for now. Goodnight guys.

-Brooke-

Fast Heart, Slow Brain

Today was rough. I woke up with my pulse soaring at 152. I could feel it in my chest, my legs, my arms, my head…everywhere. I had just woken up and I was exhausted! I managed to push through the nausea and eat a waffle before heading back to my bed. After a few minutes of resting, I had to get up to go babysit. I have no idea how I managed to get in the car, drive to a day care center I’d never been to, pick up the kids, drive home, and play with them…but somehow I did. I came home and went straight back to bed after chugging some more Gatorade. I woke up feeling miserable still. My mom came in and lay in the bed with me. I told her that I was really sick and that I could not manage to take another sip of Gatorade without feeling like I was gonna barf. My mom looked at me and told me there was nothing more anyone could do for me so I needed to just drink more water and “think positive thoughts” cause it couldn’t be that bad after all. I began to cry, well as much as I could being dehydrated and exhausted. The thought that my own mother wasn’t being supportive and that she didn’t believe how bad I felt was hard. I know I’m not crazy, but I want her to know it too. I know I’m sick, and probably need to go to the doctor, but she doesn’t believe me. It’s hard when your friends and family don’t understand what you are going through. Luckily, I have found an awesome group of people on The Dysautonomia Connection. They understand and know what I’m going through. Anyways, I’m not really feeling good and I’m sure if I read through this again, none of it will make sense, so I’m gonna stop. I hope everyone is well today, and remember to JUST KEEP SWIMMING…even when it’s hard!

-Brooke-

The Sleepiest

Today has been a pretty okay day! I woke up and hung out with the family a little, then went off to babysit. The girls (9 and 7 years old) had never seen Matilda before, so I brought it over for us to watch. It brought back the most bittersweet memories. When I was younger, me and my best friends Sarah and Emily watched that movie ALL the time. We would sit at stop lights and pretend to change them from red to green with our eyes; we would pretend that we were girls escaping the evil Ms. Trunchabel and going off to live in a beautiful cottage with Ms. Honey. Between that and A Little Princess, we spent most of our days drifting off into an imaginary world…but anyways! So, after me and the girls I babysit watched Matilda, I was thrilled when they said that they wanted to “play” Matilda. Drifting back into childhood was definitely a highlight of my day. I came home and found myself exhausted, so I checked my blood pressure and heart rate. With a pulse of 140 and a blood pressure of 70/40, it was no wonder I was so sleepy, so I decided to take a nap. After my little nap, my dad and I ate dinner and finished up our game of Monopoly (I won, in case you were wondering). And now here I am again, trying to work on homework, but am SO sleepy. My arms are weak and my head is a little bit spinny. I’m thinking due to the heat today I might be a little bit dehydrated. I always read about people with POTS or Dysautonomia who are hospitalized for dehydration and I always wonder how you know where the line is between “regular dehydrated” and “hospitalized dehydrated”? Anyways, I can’t concentrate anymore so I’m gonna stop writing. I had a nice blog post planned for today, but I guess I’ll just save it for tomorrow!
Hope everyone is well.

-Brooke-

Hot, Hot, Hot!

Woo! It was a hot one today (104 degrees Fahrenheit). There was actually a heat advisory in our area today, meaning I did my best to stay inside. However, there were some things working against me…my aunt came to town today. Some people enjoy visits from their relatives, some people don’t. I don’t. My aunt and my mom are basically the same person, so when they are together it is pointless to try to get a word in edgewise. So, mom, dad, and aunt came home from the airport and I escaped into my bedroom to try to get away from the unnecessarily loud chatter coming from downstairs. I felt pretty good today; I blacked out a few times, but only when standing. Dad and I decided to play Monopoly, since it is a summer tradition for us. However, another summer tradition is to play Monopoly on the back porch. So, in keeping with tradition my dad and I set up camp on the back porch. About 20 minutes into the game, the heat was definitely getting to me. Tachycardia was setting in and my head was feeling airy. We put a pause in the game when heavy brain fog set in (imagine trying to count money, buy houses, and move a piece while foggy!). By the time we came inside for a break, my heart rate was up to 130 and I was feeling it. I rested up, watched some TV, and ate dinner, before going back out to finish the game. Unfortunately it’s Monopoly, so the game still isn’t over…it’s on pause until tomorrow night. On a scale from 1 – 10, with 1 being a terrible, sick day and 10 being perfect health, I would give today a 7…which is pretty great! So for today, I’m going to count my blessings and hope for more 7’s while keeping my eye on tomorrow’s weather. It’s expected to be 107 tomorrow. WhooWee!
Hope everyone is doing well and has a great start to the week!

-Brooke-

The Beginning

Hello all! I have decided to keep this blog to share my journey through life with an invisible illness. I'm going to try to be honest; the good, the bad, and the ugly. So here it goes...

I was a "regular" girl until the age of 20. I say "regular" although my life has been anything but ordinary. In 7th grade I was diagnosed with panic disorder, which progressed into agoraphobia by 10th grade. For about a year in 2005, I was homeschooled with severe panic attacks. I thought that this was the worst part of my life, and whether I was right or not, I'm still not sure. I do know that ever since then, everytime I have fallen ill and gone to the doctor, it has been chalked up to anxiety and panic. I think somewhere in the back of my mind I always knew that there was more to all of my sick days then just anxiety.
However, on February 12, 2010 everything changed...and quickly. I was on a weekend away with a school group and began passing out, 4 or 5 times each day. I thought it might have been the change in altitude or anxiety. I had passed out a few times before, but I believed that to be from the hole in my heart, little did I know it was so much more than that.
On March 1st, I went in for a tilt table test, in which I took 4 minutes to pass out. I was then diagnosed with Dysautonomia.
Dysautonomia is a malfunction of the autonomic nervous system. The autonomic nervous system controls the unconcious bodily functions, such as heart rate, digestion, and breathing patterns. Some symptoms of dysautonomia include extreme fatigue, thirst, dizziness, anxiety, tachycardia, low blood pressure, trouble breathing, syncope, intolerance to heat, blood pooling, etc.
Each day presents a new challenge while living with dysautonomia. New challenges that lead to frustration, tears, laughter, and lessons. I'll try my hardest to keep you updated on all of the above.

-Brooke-