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!