Thursday, June 30, 2011


I have been blessed with the best family EVER. I'm especially thankful for my close friendships with my cousins. We joke that we're together by default, but I really enjoy their company! We don't get a choice of what we're born into, or how we're brought up, but I'd choose my family over anything.
While family was in town, we decided we wanted to go to the Newport Aquarium. Even before I opened my eyes that morning we had planned to go, I knew it was one of "those days". I was upset. I decided not to join them because of the pain and numbness from my legs. It's like standing in fire... it feels like the flames are licking my calves and the stinging sensations are shooting up over my knees and thighs. My legs might swell, twitch, shake, or just completely give out from under me. Do you know the feeling when your legs "fall asleep"? I know they're still attached, but I can't shake them back "awake".  It's like they've been filled with sand. It's similar to the feelings I had after finishing my first half-marathon last year, but it's beyond just weakness or being tired. So that morning, as I was resting in bed, I started getting really upset. I wanted to go see the aquarium and, more importantly, spend time with my family. I was furious. I wasn't going to lay in bed all day and feel sorry for myself. I wasn't going to waste another day. The pain wasn't even my biggest obstacle... it was my ego. If I wanted to go to the aquarium, I was going to have to use a wheel-chair.
I suppose anyone could just wheel around all day, but I actually needed this assistance. It was a humbling experience. People looked at me. I smiled back at their questioning and curious glances. I'm sure they wondered why I was being pushed around.. I had to use the special doors and sometimes couldn't even see all the exhibits. After I got over my embarrassment, I had a great time! I really enjoyed myself and everyone I was with. The pain and numbing sensations were significantly decreased, and I could keep up with them as we made our way through the aquarium! I just know that wouldn't have been possible without the wheel-chair.
I pride myself in the fact that I can push through the daily pains, so it was truly hard to accept the fact that I couldn't depend on my legs that day. These symptoms are newer and may be caused by a condition called "Peripheral Neuropathy". I'm thankfully not bound to a wheel-chair full-time, but I understand I may need one more and more in the future to do the activities I want to.
I am concerned about my future. Walking is such a simple thing I took for granted. How am I supposed to walk to class everyday at a campus far from home? My house isn't handicapped accessible, but at least at home I don't get funny looks when I have to rest at the top of the stairs I just crawled up.
I'm learning to worry less about my pride and try not to look at my situation as just being "high-maintenance". I know it takes more courage from me to ask for assistance.
I'm so thankful I got to go to Newport! I love the ocean. I love water sports. I love swimming! Unfortunately, I can't lifeguard or swim anymore. Ever since watching my favorite disney movie, visiting an aquarium is the only thing closest to becoming a mermaid princess I can get!
Another one of my favorite memories is when I snorkeled in the Caribbean. I got to swim with some of the most beautiful and colorful creatures I've ever seen. It was a magical experience that I'll never forget! But I couldn't breathe under water without a snorkel, and I couldn't have seen them without some goggles. So while it may require some tools of assistance to make make up for the things that have been taken away from me, it's these challenges that make me appreciate life so much more. Every pill, injection, treatment, wheel-chair, etc are all worth it. It's like when you jump into the deep-end, and you sink all the way to the bottom. The further down you are, the harder it is to swim back up again. You've made this journey to the surface a million times before, but it still makes you anxious as you kick back up to the surface. You have no choice but to keep swimming, your eyes on the sunlight above. After every challenge I overcome, it's like that relieving feeling you get when you take that first giant gulp of air at the top of the water.
It's a beautiful life, and if I need some physical help along the way, so be it. I at least hope I learn enough to pass on my own assistance to another.
"Now I know there's much more dignity in defeat than in the brightest victory."


Hummingbirds are glorious, tiny balls of excitement! They are so much fun to watch. After HOBY, I had Hummingbirds - The Benefit Show. I was very caught up in the craziness of HOBY before, during, and after. I really did very little to help plan this wonderful fundraiser, but I was so thankful to be apart of it!
I first met the man responsible for Hummingbirds, Christian Stargell, through Dayton Philharmonic Youth Orchestra, and he has turned out to be a wonderful, selfless, and generous friend. He took the initiative to plan everything! It truly exceeded all of my expectations! I look forward to working with him again in the future.
It was such a beautiful night! On June 24, at the Cannery Art and Design Center, about 200 people came together to raise money and awareness for ME/CFS, The Seedling Foundation in support of the arts program at Stivers School for the Arts, and to help Christian afford his summer music study in his pursuit of a professional music career.
I was beyond impressed with all the performers, artists, and supporters. The Stivers students and others who donated their talents really touched me. It meant so much that all these people were so willing to benefit others. Many had never met me in their life prior to the show, and they gave more than just their time that night- they truly gave me hope and inspiration! Awareness is so important to me. I feel we really made a difference that night. I'm only one of many who are dealing with this same disease, but I  doubt any other patient has the support like I do.
I had a blast. It was truly a very fun and enjoyable evening! It was physically and emotionally exhausting, but Hummingbirds is something I will never forget. Thank you for everyone who came out in support and for all of those who were involved.
I think hummingbirds are a great symbol for those dealing with this disease. Many were extremely active before falling ill, and like hummingbirds, they must fight to stay flying.

Hummingbird, bird of beauty
Glorious green, purple, and yellow
You don't sing a lot, but you don't need to
Hummingbird, struggling to stay in the air
With all your might, Fight! Hummingbird, fight!
Little Hummingbird, You are the mightiest
You are like a cloud in the sky
But you are not alone, I am here
Drink the nectar of flowers, gain your strength, fly high!
Hummingbird, people stop and stare, they say, "Oh it's so beautiful"
Hummingbird, buzzing around, You are my focus
Christian Stargell

Sunday, June 26, 2011


For the first time in a very long while, I was actually caught up in LIFE. I've been wonderfully busy, and more importantly... I've been able to (mostly) keep up! While my activities and health aren't even close to being back to "normal", I've been so happy to be involved again. Most of this is because of a new medicine I've started! At the beginning of June, I went to the cardiologist for the first time. She was FANTASTIC. It's always such a struggle to go to a new doctor. They usually don't understand or don't have any clue where to start with me medically. It's even worse when you see a specialist... they only know their areas of study, and it can be difficult to try and get them to see the big picture. I was very reluctant to go to this specialist at first. There are definitely barriers of communication; I explain my entire medical history to the nurse, she passes it on to the attendants or interns, and then it gets to the doctor. I could tell that the attendant had walked in with a mind set of my condition already, I just assumed the doctor would feel the same. I assumed wrong! She was willing to work with us... I was beyond relieved. Because ME/CFS is such a complex "umbrella" disease, I've also developed Postural Orthostatic Tachycardia Syndrome (POTS). This itself may be responsible for a lot of the fatigue, dizziness, fainting, headaches, etc. While she was hesitant to prescribe a potentially risky medicine for treatment of POTS after only one visit, she respected our research and background prior to visiting her, and decided it would benefit me to start this new treatment. With this new medicine, I have improved significantly! Finally, medicine is on my side. Not only was she so cooperative, she came in privately after our visit and shared with me that she too had been sick like me for years. It was so inspiring to see a successful, working, and strong woman with ME/CFS, EBV, Celiac, and POTS! I plan to follow similar footsteps someday...
On the 12th, I turned 17. My mom had an adventure trying to find ingredients for a chocolate dairy-free, gluten-free birthday cake. She's awesome, and so was the cake! Although, my adapted taste-buds may be a little biased...
Besides celebrating my birthday, I was preparing for HOBY!
HOBY stands for Hugh O'Brian Youth Leadership. Check out or Last year, I had the opportunity to go to HOBY as a sophomore ambassador for my school. That first four day seminar was a very unique experience... to say the least. It was completely eye-opening and inspiring! I love what HOBY stands for and I hope to continue supporting this great organization for the rest of my life. A blog post can never ever do it justice. I really believe in HOBY's mission. This year, I returned as a volunteer. For once, I was useful again. I was able to accomplish many projects before, during, and after the seminar! I didn't necessarily expect the mental rejuvination this time around. I was mostly behind the scenes for the seminar, but I was able to sit down for one speaker, Jenny Buser.
She's one of those people who you can just see the light of God shining through. Because of her wonderful, selfless, and truly genuine personality, she easily touches people. Jenny returned to this year's seminar without any notecards for her speech (as usual). She had us all very casually sit on the floor in front of her. Jenny opened with a prayer, asking for God to speak through her. She touched on the subject of molestation, which she had experienced as a young child. While I was not able to relate with some of her trials in her life so far, she really touched me when she spoke of the importance of angels in our life. Her motto was "...and you learn to laugh". At the end, she sang "Angels Among Us". This older woman caused an unexpected flood of tears. I can't remember ever breaking down in the past 7 months... but I really just let go. So many emotional teenagers and adults came up to her after and thanked her... I know Jenny knew nothing about my life and my struggles prior to coming to the seminar, and she was still able to break through my barrier I had built to defend myself from any emotional weakness. I am even more thankful for my good friends at HOBY who were able to truly comfort me. Thank you for those who didn't ask, and didn't treat me like the sick girl. Thank you for those who went out of their way to make sure I was okay, and allowed me to vent a little (or a lot). HOBY brought some really remarkable people into my life. HOBY, and all my good friends involved, really became such a life-saver for me. After my episode with the Ambien, I started to turn numb. I closed up defensively... HOBY not only gave me something to do, but sparked the fire back in me that I was missing. I am so very thankful! HOBY hugs to all of you angels! :) What a wonderful start to my summer. It seems sunshine, laughter, tears, family, friendship, and Florinef are the best medicine for me!

Wednesday, June 1, 2011

South Park.

South Park can be an extremely annoying show. The other day, I turned on the TV, and it was on the channel. But I didn't change it... thankfully.
The episode was about one of the characters falling sick. He was very upset because his friends were living successful lives, and he felt he was being punished. He came to a conclusion that God could not exist if his life was so unfair. His Jewish parents immediately tried to show him how important faith is in times of struggle. They pushed how we must always be thankful, no matter what. They explained to him the book of Job I.
The story of Job was one that I was not very familiar with. I knew the scripture, "The Lord giveth, and the Lord taketh away", but I didn't know they were related. Job was a very blessed and righteous man. He had all the riches he could ever want! He always lived for God and he always gave thanks to Him. One day, Satan challenged God over Job's integrity. Satan reasoned the only reason Job was such a faithful man was because God protected him from harm. God then removed his protection, and Satan destroyed everything Job had. Job's bountiful livestock and servants were murdered, and his beautiful family died in a collapse of his giant mansion. All in one day. At the end of that day, Job didn't curse God like Satan had hoped for. He didn't even ask "why?". Instead, he shaved his head, stripped himself of his robe, and bowed down before God in worship. Job said, "Naked came I out of my mother's womb, and naked shall I return there. The Lord gave, and the Lord has taken away; Blessed be the name of the Lord." (New Kings James Version)
I was in awe of Job and his faith. I know if that happened to me, I'd probably be a little upset. I was even more embarrassed that South Park taught me such an important lesson... I know that the book of Job, and the story of his unwavering faith and love for God is very inspiring for me! It just goes to show that God is always reaching out to us in ways we'd never expect. God has the best sense of humor ever.


Medicine is a practice. Practice often involves mistakes. As humans, mistakes are ultimately unavoidable. Drugs are made by humans. I found Ambien, a sleeping medication, to be one of these mistakes.
While my body may be inadequate on some levels, my thoughts and my mentality are so important to me. I want to be able to find peace within myself even when I'm surrounded by this chaos. M.E. is a neurological disease, too. The daily pain and struggles don't even compare to the struggles I have mentally. I'm almost embarrassed to admit that this may be affecting me cognitively. I took so much pride in the good grades that came naturally to me... It's hard for me to focus and concentrate now. Even with writing, I have to search longer than usual for the sentences that once flowed out of me. Granted, I have been out of school for nearly 6 months. I'm also taking a lot of medications with these continuous lists of side effects. But I get so embarrassed when I slip up. I usually just brush it off with a "I'm just a little out of it". Meanwhile, my mind is racing. Searching. Trying to find where I missed that piece of vital information. Nothing is more disheartening to me than when I can't find the source of the problem. Even with all the pains, I can at least explain them physiologically. I'm accepting of what life has played out for me, and I just focus on each day. I cling to every good moment I can, taking mental recordings to play them later when I'm feeling lost. This way of living seems so.. empty, sometimes. I wake up, and within a few moments, I may wish that it was the next day already. Sleep serves as not only a time for my body to heal itself, but as some peace of mind. I know when I wake, I'll have a fresh start. 
Insomnia is a very contradicting side effect of this disease. I go between sleeping hours and hours to just laying awake, twisting and turning out of discomfort. I feel tired most of the time, but it's more than just being "tired". I've had lead blankets put on top of me for MRIs, and CTs, and X-Rays. It sometimes feels like these blankets have taken a permanent cover over all my skin. Sleep is what I need. Sleep doesn't always come, and it doesn't always stay. Sleeping medications assure that I'll fall asleep quickly, and stay asleep, despite the aches and irritation. 
With my new sleeping medication, Ambien, I certainly fell asleep quickly. But with this drug, it only placed my body into a trance. Like hypnotizing. My mind was still conscious. It's very hard for me to describe the night terrors that overwhelmed me the following nights while on this medicine, and the ones that stayed around even when I stopped taking it. Without going into too much detail, it's understandably hard for anyone to shake that bad dream during the day. These terrors seemed to suck me in to their vivid moments of agony, torture, and despair completely. I was so terrified. I was afraid to sleep. I was afraid of my own mind. This drug cracked the strong barriers I used to protect myself from the expected emotions that come with any struggles we face. My mind, the very thing that kept me sane, turned on me. I had no control over those images and scenarios while I was asleep.
I noticed my Cleveland doctor was hesitant to prescribe me this medicine. I honestly didn't do a lot of research on it before I took it- it was FDA approved, and I was very eager to get a good night's sleep. I obviously missed the scary side effects... things besides just sending weird texts or rearranging the objects in my room while asleep. I understand that every drug has a different effect on each patient. I stopped taking this medication almost a week ago, and I'm still apprehensive for each night's "rest".
I haven't blogged in a while, simply because my mind was so chaotic. This situation is much more private to me than I'd normally feel comfortable sharing. I hope those reading understand my embarrassment, confusion, disappointment, and insecurity on this topic. Although, I have found that blogging about this seems to give me some distance from it. If I remove the fear of the situation even slightly, like by taking some courage to post about it, it will have less control over me. My mind serves as a safe place, a good place, despite it all.
Mistakes are meant to be learned from. I'll continue to preach to do research on your own health and medications, and to be an advocate for your own body. This idea of accepting and conquering what life throws at you is very, very hard sometimes. I'm healing slowly, filling in that crack. We're sensitive creatures. I always stress the importance of the angels in my life, but there also has to be some sense of independence and self-relience. My relationship with God (no matter how rocky it may be), with myself, and with those who support me help keep my peace of mind protected. It is well known how a very small thing can have such a huge impact on us. That goes for everything we do in life. Our words, our actions, our body language, and even our thoughts can make a difference- for better or for worse. The Ambien pill is not even the size of an M&M. I took a half a pill for only a few nights. It was so tiny, yet so destructive.