Even Big Girls Cry Sometimes

Life always has a way of sending you curve balls. I admit I have been horrible at keeping up with my blog. A part of me wants to remain private while another part of me wants to have a platform to share my experiences with others. Also, with the internet being so accessible, a part of me wonders if my blog is actually keeping me from potentially getting hired at new jobs. My doctor advised me to write "anonymously" but I want people to see who I am because I am just like everyone else. And with this disease being so rare and uncertain I want people to know it can happen to anyone.

you + me = us (I know my calculus)

With that being said, today was not the best of days. I try my best to stay positive and deal with my disease day to day. But when you get diagnosed with a life threatening disease, there will always be doubts and insecurities. My first insecurity developed when I began bruising spontaneously from severely low platelets. At one point my legs were completely covered in bruises and stayed for months. Thank god for the maxi dress/skirt trend. When I started my cyclosporine pills, my platelets rose tremendously and my bruises began to fade but I couldn't be exposed to sunlight while on the medication. And that's when I became a Vampire. I avoided my favorite past time of being a beach bum. After 14 months of vitamin D deprivation, I stopped taking cyclosporine and rekindled my love affair with the sunlight. 

I was beyond ecstatic when I found out I could stop taking my pills. A part of me felt like I was slowly becoming normal again. Like my old self before getting sick. But like everything in life, its always uncertain. I had my bi-weekly doctor appointment today and found out my platelet count went from 115,000 to 50,000. Which means bad news for me. For those that know me, I rarely cry in front of people. It makes me uncomfortable watching someone cry so I try to hold it in. Today when Dr. Phan told me the news that I had to go back on cyclosporine, I cried my eyes out. Sometimes life isn't fair and you have to learn to roll with the punches. I have been doing some research and decided to try out some natural remedies to help increase my platelets before I decide to go back on medication. And the one thing I've learned is that you have to be pro-active in your health. Even if you feel like you have the best doctor in the world, always get a second opinion and do your research.

"Crying doesn't indicate that you're weak. Since birth, it has always been a sign that you're alive."

Heroin&Ectasy

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.

Peace & Love

  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.

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 :)

my rainbow  xoxo

HAPPY TWENTY 12!

One of my new years resolutions is to blog more. And my reoccurring resolution of not procrastinating. Although I am a little biased about new years resolutions since I feel like you don't really need the start of a new year to accomplish and set new goals. 2011 I am so glad to say goodbye. You were by the far the hardest year of my life. I learned a lot about myself and you taught me great lessons on life and love. But now I am ready for 2012, the year of YES! I want to try new things, slay new goals and overall just do what makes me happy.

Health wise I am actually improving. The cyclosporine pills I am currently on have been improving my platelet count. I have been able to push my blood transfusions further apart. I don't get shortness of breath that often. Bruises on my legs are kinda getting lighter. Just taking everything day by day :)

xoxo
 

I'm in a glass case of emotion...

Do you ever have that overwhelming feeling that makes you just want to cry. Not because you are sad but because you are happy and overwhelmed all at the same time. Today was one of those days for me. I went to a local coffee shop and enjoyed a nice coffee and bagel sandwich. Viento y Agua is the bomb.com for all you Long Beachians. Plugged in my laptop, which has collected lots of dust due to my Ipad2 take over, and began my FIDM application essay. I'm so excited but at the same time scared. When I graduated Cal State Fullerton in May 2010 I was stoked and ready to conquer the world even though I had no idea where my career path was headed. Now that I somewhat have a college degree in Broadcast Journalism, the career no longer interests me. I guess I could potentially get a job anywhere doing anything since most people don't even end up following their intended degree. But when I was hospitalized at City of Hope I had a lot of time to think about life. I wanted a job that I would love and enjoy. I HATE office jobs. I LOVE clothes, shopping and interacting with people. Why not combine all my loves? So I decided that my next ultimate goal is to open and run my own clothing boutique. I know the odds are against me but I honestly don't care. I never want to look back on life and wonder what if.

So as I wrote about myself in the admissions essay I got teary eyed. Looking back on the last year and a half I have been through so much. I'm not always open with my feelings and its hard for me to share personal things about myself. Hence the reason why I started this blog. Although I have been lazy on updating it. I'm just glad that I have new goals and aspirations to conquer. The past few months have been tough. I quit working in May and got on disability. The summer was nice not having to stress about work and getting to hang out and do whatever I want. But when September rolled around and everyone around me started school and work and became busy, I felt lonely and under accomplished. I was unsure of what I wanted to do and kind of felt like a failure.

But where there's a will there's a way....I am doing everything in my ability and using all my resources to go to FIDM. I will be going for merchandise marketing and business management in April if all goes according to planned.

Watch out world, here I come.

"Behind every beautiful thing there is some kind of pain."
-Bob Dylan

"Life is about not knowing, having to change, taking the moment and making the best of it."
-Gilda Radner

"Every man dies - Not every man really lives."
-William Ross Wallace