World Rare Disease Day

Well I just saw this and couldn't not repost it on here. Today February 28th is rare disease day and well for those of you who do not have to worry about this then good for you. But in my work, my volunteering and even in my friendships in life I have seen people suffer in many different ways due to a rare disease. The biggest being Cystic Fibrosis, what I truly believe is one of the worst things you or your family can deal with. Today I will be thinking about all the people who are affected in life someway by diseases like this and I will say my prayers when I go to bed tonight for my health and the health of my family.

In honor of this I'm reposting a blog I wrote in 2010 that has to do with this very thing: (warning its long and emotional but necessary today).

Yesterday Was One Of Those Days....

WARNING RIDICULOUSLY LONG EMOTIONAL BLOG POST BELOW.

March 27th, 2010 this date will be burned into my mind for numerous reasons. All of them important all of them deserved their own day, but two moments of this day turned out to be nothing short of life changing. These two moments I know will stay with me...forever.

Early yesterday morning I woke up about 4 hours earlier than I usually do on Saturday mornings. I put on my black stretch leggings, I put my lucky tank top on, a few layers to battle the cold and I made my way out my door to compete in my first ever running race. I know to some this may not be a big deal, but to me you have to understand who I am and where I come from. I do not run. I am not a runner. I can run. I'm capable. But its like swimming, I look like a fool doing it and I usually fail. Which is why this 10k has been taunting me for the last 5 years. Every year it runs all over my neighborhood and I stay inside like a coward and think 6.2 miles? Yeah right. Never ever going to happen. Well this changed last year.

I was laid off by my employer, bored, and took up...yes running. Slowly but surely I started running, and running more and running more. And slowly things in my life started to change. I was healthy again... and most of all my head was in a better place. With running, I get this release of there is nobody in the world who is in my thought at that moment. Its just me, my sneakers and the road. Yet still the thought of being next to actual "runners" scared all that confidence right out of my body. This is why yesterday was so important.

Yesterday I completed the 6.2 miles of the Ukrops Monument Ave 10k, completely alone (well there were about 39,000 other runners but you know what I mean). I did it by myself. I woke up by myself. I ran by myself. I cheered myself on. I treated myself to a drink after. And I and me alone was the only thing affecting the outcome of yesterdays race. Why did I do it this way? For a few reasons. I had no expectations. Nobody waiting for me at a certain corner. I was going to disappoint or make happy nobody other than myself. Which is the point of running right? Personal victories?

Well the outcome? I finished 6.2 miles in under 50 minutes. WTF!?! My time was easily better than anything I could have imagined or dreamed of. I couldn't believe it when I crossed the finish line. I felt amazing. Satisfied. My legs were jelly, but my mind was on fire. I had felt as if something had come into my body and finished that last 1.2 miles for me when my body said no. I had no idea what it was but the energy and feelings that I had finishing yesterday was satisfaction times 5. I proved to myself that if I did put my mind to something it could happen. But all day yesterday I was still reeling from my time. I just couldn't believe I ran that fast, I knew it was cold but really? Still was amazed.

It was about 6pm last night when I picked up my phone and read this email from my dear dear friend Amy. "Eva died. I am SO PROUD of you for running today and appreciating every breath.".

My world stopped for a moment. I was getting ready to walk out the door and meet two of my good friends for celebratory beers when all of a sudden this bomb was dropped and then the beginning of the day, the under 50 min run, the mind on fire, the feeling of awesomeness started to all make sense. Eva....Eva. Eva. Eva.

Meet Eva. She is by far the most inspirational, lovely, beautiful person that I have ever had the pleasure of knowing but never ever speaking to or meeting in person. Through her journal entries in her blog I feel like I have been living with her fighting the fight with her her to stay just alive and continue her journey for the last few months.

I was introduced to Eva and her blog "65 Red Roses" by my good friend Amy who works here in Richmond with one of the greatest organizations the Cystic Fibrosis Foundation and every day she works hard to make CF stand for "Cure Found". Every day she comes across stories of people who usually are much much younger than I am who are battling this horrible horrible disease. If you are not familiar with CF I highly suggest you research it, then do what you can to support people living with this disease.

Eva was an inspiration to anyone who is living with CF. Ava would have turned 26 next week. 26. She had been living with CF for her entire life. She had somehow managed to keep a brave face while faced with double lung transplants, horrible diagnoisis's and year after year of failed treatments. Yet she created her blog a few years ago to share her personal "little victories". Here is her statement:

"I am positively ecstatic about my future. I feel like happiness radiates out of my pores. Even when my anti-rejection medications have me shaking like a leaf, I know that it will get better. I am well and able to run, skip and cross-country ski. I have so many big plans for the future but for now I have so many little plans, so many tiny victories. This journal is now a place to celebrate those tiny victories. May there be many more to come!"

Amy introduced me to her blog a few months ago (she has been following Eva for over 2 years). I remember that I was reading it for a few weeks every morning. She would talk about her boyfriend, her crazy fire red hair, her sister and her parents that absolutely adored her, the movie she was working on. She would talk about her future, her life, but most of all would talk about LOVE. You see LOVE. Is what was keeping Eva going. The love of everyone around her, of her internet friends who she had searched out to find "other people with CF who understood her" she just loved to LOVE to everyone in her life.

That is why the morning of February 11, 2010 was so hard. That morning Eva posted this video below (warning on the sad sad subject matter of the vide0). Eva shared with us that morning that she was losing her battle with CF. That really there was nothing left for doctors to do but make her feel comfortable. Yet she wasn't here that morning to make us feel sad for her, she did it like she always did, with the message of inspiration of hope of most of all LOVE. For you see the most important message she gives in this video is that "the greatest thing you will ever learn is just to LOVE and be LOVED in return" (Eden Ahbez).

This video was recorded on February 11th. For over the last month Eva has been updating us on her journey. The good (her getting a diploma), the bad (more failed tests) and the ugly (the drugs and treatments shes being going through). Every morning I wake up and check her blog to see how she is doing, to see if she made it through the night, and most importantly if she is still Eva.

As I said above, Eva lost her battle with CF yesterday morning. Probably around the same time that my legs were turning to jelly during my running race. Its ironic that the slogan for the CF foundation is "Breathe" and its all that I could think of doing yesterday morning. Breathing in and out. One step at a time. Just like Eva. Breathing in and out. For one last time.

I would like to thank Eva and her family and friends for sharing her inspirational journey with the world. If you have time today I would go to her journal by clicking HERE, read her thoughts, her story and her journey of life. She is an inspiration that I know I will never forget.

So yesterday March 27th will go down as just one of those days I will never, ever forget.

May you finally rest easy Eva.