Tuesday, June 29, 2010

One word...

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


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


Friday, June 25, 2010


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!

Sunday, June 20, 2010

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!


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

Saturday, June 19, 2010

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!


p.s.-here's a great song that I have always loved. very relavent!

Thursday, June 17, 2010

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.


Wednesday, June 16, 2010

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.


Tuesday, June 15, 2010

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!


Monday, June 14, 2010

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.


Sunday, June 13, 2010

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!


Saturday, June 12, 2010

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.