Life is one craaaaazy journey. Or as the youth say "that shit cray." Since being diagnosed, I have overcome some really big fears. I am a baby when it comes to pain. When I was little I was terrified of summer ending and school starting all because I knew I would have to get the dreaded TB shot. Even though my mom would try to distract me and tell me it would only be a little prick, I would full on panic and cry. The same went for taking medicine. Cough syrup and pills made me gag. To the point where someone would have to physically hold me down and force me to swallow it. My great-grandma, bless her soul, thought she was clever when she would make me french toast and sprinkle crushed up aspirin on top and tell me it was powdered sugar. "Eww grandma it taste like chalk!"
Needles and pills were never my thing. Unless it's heroin and ecstasy. I kid I kid. Even at 22 when I drunkenly got this tattoo in San Diego, I didn't even watch as the lady with the lion thigh tattoo permanently etch a sketched this pretzel on my wrist. Unlimited Wetzel Pretzel for liiiife son.
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| Peace & Love |
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Yes, those are my current nails. And no it is not a pretzel. It's a heart with a peace sign in it. In all honesty I just felt like doing something spontaneous. But it made for a great memory. If my future children are reading this, please make sure you know what you want before you get it and ask your dad to take you :)
Nowadays, needles and pills are an everyday part of my life and survival. Not because I do heroin and ecstasy. But because it is a part of my treatment. A lot of people ask me the same questions so here are some answers to better clarify things.
*There is no reason or actual known cause as to why or how I got this disease.
*Bone marrow failure doesn't target a specific age, gender, race. This disease is an equal opportunity spreader.
*There is not really a cure, but a bone marrow transplant is the best/worst option for a chance of survival.
*I am on the bone marrow transplant list, but with a 40% mortality rate I decided to try other options first.
*I have FOUR siblings but since they are all half siblings, they don't match.
*No I don't have an eating disorder and I have been skinny my entire life. [Someone actually thought I was sick because of an eating disorder. If you would like to challenge me to an In&Out eating contest, please let me know when. Tab is on you though.]
*I stay positive and use humor because if I didn't I would never make it out alive.
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| Like a Boss |
Besides getting my blood drawn every Friday to check my blood levels, I also get the pleasure of seeing my wonderful Dr. Phan every two weeks. Since September 2010 I have been getting my Soliris treatment through an IV every two weeks to treat my PNH. In high school I hated my extremely veiny skinny arms and now I am thankful everyday that my protruding blue veins are a blessing in disguise. And for my amazing nurses that do such an awesome job at making me feel comfortable and at ease. Quick shout out to Michelle, Crystle, Somaly, Patti, Puddy and Linda. These nurses have become more like family and friends to me. I still can't watch the needle being inserted in my arm though. That part never gets un-scary. I also get IVs put in my arm when I get blood transfusions. But I am
TRANSFUSION FREE in 2012 so far. Whoo whoo.
Blood transfusion aren't scary. It is kind of weird thinking about some random strangers blood getting pumped into my body. Sometimes I feel like maybe I'm really vampire. But that thought quickly fades as I don't sparkle in the sun and can eat garlic bread by the loaf. But like everything in life, there are always risk. I could get an allergic reaction to the blood. Or my biggest fear of iron overload :( There is a treatment for it but the side effects aren't worth it.
I am a pill popper. Not by choice. And unfortunately I can't crush these horse pills on a piece of toast and pretend its powdered sugar. Nope. The Cyclosporine pills on the left are gigantic compared to the extra strength Tylenol on the right. I'm not really sure why I threw the quarter in the mix. Anyways, I take two of those bad boys twice a day. Total of 4 a day. Pill colada anyone?
And there you have it people. A glimpse into my life. If I can overcome my fears, doubts and phobias so can you. Even when you think you can't just keep pushing forward. Stay positive. Take everything one day at a time. There will be days when you feel like giving up. Just remember,
there will always be a rainbow after it rains :)
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| my rainbow xoxo |
