If only I could grasp reality

There's rumors of there being a cure for people with my disability, Spinal Muscular Atrophy.  I'm excited, but I'm hesitant.  I've been waiting for this news for so long and although nothing is open to all of us with this condition the clinical trials will be starting soon and up until now there has only been good results.  There have not been any side effects and so far the only limitation it has is that it cannot be injected into those that have spinal rods (such as myself and many others) but the pharmaceutical company working on this cure is already looking to alter it for those that need it.  This advancement in medicine (along with my recent addiction to Grey's Anatomy) has made me realize that medicine is advancing at an exponential rate.

If you wish to donate to SMA research and the rest of the neuromuscular diseases please visit MDA.org  

Adios readers,

Yomara :)

Grey's Anatomy Post Cleanse

So it's been about a week since I have watched Grey's Anatomy and I'm definitely having withdrawals, but read on to see my opinion and thoughts on the show.  As I said in my last post I was hesitant about watching this show because of the hospital anxiety I have, but I did some research about the show and found out that all the surgeries they show on the show are actually dead cow body parts and obviously fake blood and actors.  Once I programmed my brain into thinking that the actual medical stuff was not real and focused on the scene ending or put more focus on the drama of the characters it was actually a lot easier than I thought to watch.  I really enjoy the character development of Meredith Grey and Christina Yang, they are definitely my favorite!  I love the plot twists and super intense moments, although let's be honest how could so many bad things happen to one hospital's staff!  My favorite panic situation portrayed was the shooting, mostly because it was so believable--I mean if you think about it how many people would not go crazy after having their significant other be shut off from life support!!!  I'm surprised I haven't heard of more people losing their minds over situations like these.  It really makes you think to talk things over with your significant other and/or family when you are well to be better prepared for an emergency.  If you chose to not be resuscitated or taken off life support you really should think about how that may affect your loved ones.  It's also important to realize that if you do wish to agree to either of these then that is completely your choice as well--I say this for terminally ill patients who sometimes know there is no possibility of getting better and wish to end their suffering and prevent more costs for those that stay alive.  Sorry for being so morbid, but this show really made my mind see the fact that these situations may occur and with my cripple mindset I guess I'm kind of used to thinking about the bad possibilities.

After that morbid paragraph I want to highlight the fact that Grey's Anatomy does an amazing job of highlighting the possibilities of medicine and incorporating faith in the show.  It makes me so happy to see the doctors on the show strive for excellence and bettering the treatments to care for their patients.  As someone who needs modifications to just about every treatment plan I really appreciate when the doctors try to find a solution to a problem and they are constantly innovating new ways to better treatment.  It makes me glad to know that medicine has progressed and patients like myself have a better chance of surviving.

The sex scenes are pretty famous and according to statistics and even the actors that is how they get their ratings.  I think it's a smart tool to gain viewers, but honestly it's not why I watch the show.  I focus on the characters' emotions, drama, storyline, and medical experience more than I focus on their sex life.  Frankly, I find it kind of gross that a lot of them play musical chairs with their sex life on the show, but I guess it keeps you guessing who they're gonna sleep with next!

My major complaint with the show now, even though I love it, is that Christina Yang got taken off of it.  I found her character so compelling and I guess I related to her with my constant desire to triumph and achieve my goals.  You've gotta hand it to her since she was the best doctor in that hospital!  I really hope she comes back, but I guess we'll see in Season 11...

Adios readers,

Yomara :)

Grey's Anatomy and Coffee

So as I've said recently Ali had to quit and leave her position as my caregiver, facing this extreme sadness I've had to resort to extraordinary measures.  To feel like a part of her was still with me everyday and that she was not employed by some other place I started drinking coffee and watching Grey's Anatomy.  The combination of these two is literally almost as good as having her here (well it's not really, but it'll have to do).  The craziness of me watching Grey's Anatomy is that I've hated it since it started, now I feel like a horrible person because I never gave it a chance and I've been missing out on Shonda Rhimes' genius story development for the show. The thing is I hated for so long because over the years my hospital anxiety has gotten really bad, my heart rate is literally through the roof the moment I enter a hospital.  Now I don't have photographic memory like Lexie did on the show, but I remember how I felt in the hospital: in pain, afraid, and confused.  All these feelings made me miss out on my childhood, every time I was hospitalized and I hold a grudge for these feelings--I can't let them go, they have control over me.  A normal patient would be given anti-anxiety medication, but with my disability I would end up breathing less, and since my lungs are usually the problem that gets me into the hospital the doctors chose not to medicate me.  The only time I went to the hospital for a good thing was when my little cousin was born, and even that was stressful because my aunt was in a lot of pain from the c-section.

So I took swallowed a large gulp of my iced soy caramel latte (took me several tries to figure out what coffee I liked, Ali always drank it super strong so I had to dilute it) and pressed play on Netflix.  In 2 months I have finished 9 Seasons!!!  Stay tuned for my review of the show!

Adios readers,

Yomara :)

It's so different on the other side...

This post is kind of about Mexico, but not the political stuff because for one politics confuses me and two, I could not make an argument for either side publicly because I hate confrontation of any kind. So recently a few relatives received their visas to come to the US because their mom (my half-aunt) had a stroke last September and the probability of her ever going back to Mexico is really low.  Therefore her daughter and grand kids came here, and before I continue I just want to remind you that I am extremely observant, I analyze everything, and I come up with conclusions all the time (by no means am I saying I am right about my observations, I am just simply writing down my conclusions).  The kids appear to be experiencing culture shock, they look surprised all the time, and frankly a bit confused.  Their confusion mostly comes from seeing what a selfish society we are, these kids are SO polite and they appreciate everything!  They have never even met me and they greated me with a hug, that's saying A LOT when on a day to day basis people seem to be afraid of encountering people with disabilities.  It wasn't just the interaction they had with me that made me see how they have different customs, but even when it came to dinner, unlike some people (myself included sometimes) they did not protest what they were about to eat, they ate it all and cleaned their dish.  Once again, I am reminded of the little things we take for granted.  Ironically, I also found out that water, trash, and television is free in Mexico City, where here it is ridiculously expensive and rising.  Like I said I won't get into the political because my brain can't handle it, but out of pure empathy I do feel sadness for all countries suffering either because of war, poverty, or diseases.  Count everything you're thankful for and you'll see it adds up!

Adios readers,

Yomara :)

Growing up

I always used to think that growing up meant life would get better, I would accomplish more--I always equated age with an upside down parabola.  What I mean by this is that life was supposed to gradually increase in quality at a steady slope and then at the age of 65ish it would start to decline.  The best part of the slope had to be from 18 to late twenties, it's were it would be evident that the slope really started to gradually increase.  The thing is math--a subject I loved for so long--totally was proved fiction when I started to apply it to life.  You see not only is life completely unpredictable and not at all like any math function, but it just has no 100% certainty.  I believe in statistics as much as the next person, but the thing is outliers exist in this crazy world.  For example, my disabled friends and I have x probability of living into our twenties, with every surgery and illness we have been told it would take x amount of time to heal, the odds are often not in our favor, but the odds can be wrong.  I was always so sure that if I lived to be 18 then life was supposed to get easier, I was supposed to develop a foolproof way to deal with being disabled and take control of my life, spoiler alert: I could not be more wrong!  It's not that life has become more difficult (or maybe to an extent it is), the real problem is that new questions and worries take over the old ones.  It never ends, which is good because I want to be alive, but it's also insanely confusing because it literally makes the struggle very real.  

So in conclusion, life is difficult and it's not a math function by any means, and frankly statistics can only give you so much comfort (or most often in my case: doubt) that it's all just up in the air and that is why we should always live in the now.

Oh just in case you're wondering why I sound so borderline like a crazy analyst, a lot happened in this last year of school that makes me look at the bigger picture and realize I'm immensely thankful and blessed to be alive, but I'm unsure and confused at what's next.  Ali had to quit being my caregiver so she could financially progress into the next stage of her life (which is very exciting since it's marriage!!!), but it makes me feel out of control because caregivers really do not earn enough for the type of work they are doing and I financially cannot afford her to come back (fingers crossed I will eventually).  Secondly, my chair that I have had for 18 years (since I was 4!!!) broke down right before graduation and getting a new one takes several months up to a year.  I guess it's kind of my fault I didn't get a new one sooner, but since it kept working I don't think it would have made a difference to the insurance company and they would have probably denied my request anyway.  Thirdly, I have been applying for jobs and I have had no luck yet and I feel like the government has complete control over me once I do start working because I have already been told that since I receive SSI I'm basically monitored by the government.  Ugh it's like the government that helped keep me alive all these years is now confining me to their system for life.  Sadly, another camper from Camp Promise passed away this year and that's when it all sinks in: what's really worth worrying and being annoyed over when there's a life out there waiting to be lived: it's all about the moments that make it all worthwhile! :)

Adios readers,

Yomara :)

I'm a GRADUATE!!!

Yes, you read the title correctly! I am a university graduate!!! AAAAAHHHHH who would of thought it would happen so fast, since my last blog post was in September.  I graduated on June 15th, 2014 and it was very exciting, but more than that it took a really long time!  The ceremony started late and since I had to be there early I did not eat enough breakfast, by the time the ceremony started I already wanted to eat my cap and gown.  I tried to think about anything other than food, but when you try to avoid thinking about something is when you want it the most!  It's kind of funny and sad at the same time that instead of focusing on such an accomplishment I was focused on complaining and being hungry.  I guess the triangle of needs is really true, first you focus on surviving and lastly you focus on self actualization. Not to mention that because it was raining two hours before the ceremony and graduates had to wait outside I had to hide near the entrance to escape the rain.  I know it sounds like I did not appreciate my graduation, and I completely did because we had a great guest speaker and since we started late everyone involved in the ceremony did whatever possible to make it go faster, but it was just such a long event.  It may also be the fact that I remember high school graduation being so much shorter than this one, due to the less number of people.  After the ceremony my family and I booked it to get out of the parking as soon as possible and go to the restaurant to celebrate, more importantly to me: eat!  I chose Azteca because even though I'm Mexican I still really love Mexican food at any moment!  I did not want a party just because the day did not allow time to plan a party around it.  Speaking of that day, it was Father's Day and I probably gave my dad the best present ever: a degree that he did not have to pay for because of my scholarships!  I also got him a gift card because how could I not? 

The best part of that day was definitely spending numerous hours with Ali after I hadn't seen her for so long!!!  She made the annoying hunger subside with her awesome humor and sarcasm.  Ali is like the sister I always wanted, and it was very important to me that she be there because she's no longer my caregiver (a post on that later). 

So I'm a graduate at now I'm trying to find employment, so potential employers trust me you want a Yomara in your company!  Drumroll please, I achieved what I thought would be impossible for me: making it on the Dean's List the WHOLE YEAR (3 quarters) even with my double major!!! Oh yeah, after my Media and Communication Studies major I became really interested in the impact of media in society and how society works so I added the Society, Ethics, and Human Behavior major.  I'm sorry I've been gone a whole 9+ months, but my baby has always been school and after 16 years in school I am so grateful that I have gotten the opportunity to learn from some great professors and learn material that gives me a broader perspective into society.  I am an extremely lucky individual and I hope good things will come from my education.  So far, I am not going to graduate school, but who knows what the future holds?!

Adios readers,

Yomara :)

For when I'm not blogging...

I know sometimes I disappear and completely don't blog, so for those instances when I fall off the face of the earth here are some AMAZING blogs (and might I mention their blogging schedule is also very variable).  The only reason I make this post is because I am entering my Senior year and I'm petrified, and have no idea how often I'll be blogging due to the crazy amount of video creating and editing I'll be doing, but I know in the end I'll be able to show you all some awesome videos.

Shelby a Fashion Guru:

http://shelbyhintze.blogspot.com

Kyann an accessibility advocate:

http://lameperspective.blogspot.com

Allegra a writer on the rise:

http://allegrakeys.blogspot.com

Shane an SMA comedian and advocate:

http://laughingatmynightmare.1000notes.com

Hillabush couple working in the Philippines (their daughter is my caregiver!):

http://www.hillabush.ideadeaf.org

Jenica a seeing impairment advocate:

http://theblindspotinlife.blogspot.com

Happy reading!!!

Adios readers,
Yomara :)

P.S. I'm STILL going to blog, I just don't really have a set schedule when, but honestly did I even have one before?

Winter Quarter 2012

It's crazy to think that Winter Quarter was almost a year ago, but either way I am reflecting on it now. My biggest mistake of that quarter was Burlesque, no really that was the one class in all my years of education that I most regret.  It was just not for me, I'm a shy and not-okay-with-nudity person and although the class was titled feminism, it definitely did not feel like it.  My friend, also in a wheelchair took the class with me and the looks we both received were priceless.  We were required to make pasties (nope not pastries, you read correctly...pasties) as well as watch our fellow classmates perform.  It was the most awkward experience ever.  My so-called social experiment on the world regarding their reaction to two girls in wheelchairs was pretty much an epic fail because the class itself was so awkward.  Nonetheless, my friend definitely made the class bearable and we just laughed at the pity and awkward looks.  Even though I did not particularly enjoy the class, my friend has started a pasties-making business and has extended her creativity, so yay for her. :)

On the bright side my other two classes were very enjoyable, stressful and intense, but very rewarding in the educational department.  I took Media Across Cultures and a Social Movement class, both of these classes made me see that as individuals who participate in social media we can have a huge impact in this world.  These classes just made me much more aware of how much I use social media, like this blog, and what it can be used for, not just the conventional, as well as the pros and cons.  Knowledge is definitely power! Stay tuned for my Spring Quarter post!!!

Adios readers,
Yomara :)

Where have I been this whole summer?!

I know, I know where has Yomara been the whole summer? Honestly I've been getting a lot of tasks done, some fun, some just plain tedious, but nonetheless I have accomplished several things this summer.  Number one on the list was, and is because I haven't finished, going to my new hospital and meeting all my new doctors, I was officially let go from Children's because I am twenty-one, although let's be honest I have a young face and could easily pass for a twelve year old.  I took a five credit class that was condensed into a month instead of the usual ten week quarter system, that was intense because I had to put my brain on the topic of Social Research for a month!  Luckily the class was really interesting and taught me how much social research is a part of everyday life, not to mention our professor was really funny and that made the class go by a lot quicker. Last, but certainly not least, I was busy trying to raise awareness about Camp Promise and the fact that we were quickly approaching our deadline, but had not reached our fundraising goal. It was a very close call, but thanks to so many great donors camp was able to happen. Just like last year it was most definitely the best week of my year!!!!!!  I got to hang out with all my old friends, meet some new ones, and make more EPIC memories to suffice until the next time we get to see each other. I have many exciting news so stay tuned!!!

Adios readers,
Yomara :)

Defeat

We all experience defeat sooner or later in life, sadly it is often sooner rather than later.  To start off my defeat rant I acknowledge that I have not posted anything for more than three months, I was defeated by school.  Yes school won a round this year, but stay tuned to the end of  this post to hear how I punched school in the face! I had two of my core classes this year, one in winter quarter and one in spring quarter, which is why I was determined to get respectful grades in both classes.  Even when I had time to write all I could think about was the upcoming assignments I had to do.  Spring break was almost non-existent because I had a huge paper due the last day of finals week, and then the week of vacation I had I spent sleeping, watching television, and hanging out with friends.  So in terms of being loyal to my writing and this blog I was defeated, but if it's any consolation to myself I had to read and write so much these last six months that at least I know I was technically still writing.

Now although my writing is very important to me there is another way that I was defeated, play the violins now, I didn't get on the Ellen show.  Let's be honest that deserves a sad face :(  It's weird to admit this defeat because I felt so much support from my camp family and people that I have had the pleasure of meeting that I was honestly a bit surprised she never contacted me.  I put so much effort into all the possible ways I could reach Ellen that it was disappointing when my birthday came around and I didn't make it on the show.  The thing is things happen for a reason and I'm still a huge Ellen fan and I LOVE her show especially watching the great things she does for some very deserving people.  Most importantly she spreads joy and laughter through her show, so I only hope she keeps doing so! :)

I have many blog posts ideas so stay tuned my readers on my last year as an undergraduate!!!!!! :O  Oh did I mention I made it on the DEAN'S LIST for Spring quarter?!?!?!?!  Remember I had said that that was almost impossible for me because it's so hard to focus on school in the Spring, well I proved myself wrong and defeated the limitations I had imposed on myself!  I was also published in my university's online health magazine and made my first video project EVER!!!  I also stayed healthy and have managed to recruit and fundraise for camp! So if you ever feel defeated just keep swimming and you'll eventually reach a beautiful coral reef :)

Adios readers,
Yomara :)

Peace

So in case you have not gotten my recurring theme recently I will type it out for you: live today as if its your last. I'm not trying to sound depressing, but instead urging everyone of you to seize the day. Many situations have been happening this year in my life where people have died (from camp and distant family) or stuff I hear about on the news that is more evil and unjust from what I'm used to hearing about. Recently watching the Shane Burcaw video and The Buried Life I just keep realizing that life is so short and who knows if we're here tomorrow.  I guess what I'm trying to say is appreciate the good things in your life and tell the people you love that you love them.  Last week's episode on Glee made me think what I would do or say if I was going to die within a couple of hours or minutes.  So in light of so many recent events, like the bombs in Boston and the Sandy Hook shooting, don't take any day for granted.

Stay safe readers and adios,
Yomara :)

I spent most of this video trying not to cry...

 http://m.youtube.com/watch?v=NwZZZkrJycQ

This video is pure gold!!! Shane has the same disability as me, but a bit more severe. The guy is soooo funny, this is how I try to see life with comedy relief. :) His blog is also legit!!! http://laughingatmynightmare.1000notes.com/

I'll post things of value this weekend, promise!

Adios readers,
Yomara :)

21!!!!

Aaaaaahhhhh I'm a couple hours from turning 21!!! Can you believe it!? I can't! Today it has literally hit me in the face like a billion times! I know what you're going to say Yomara just walks out (see what I did there) on her blog for almost two months and then she comes back out of nowhere with a post about her birthday...really Yomara...really?!

Well yes really!!! Ellen hasn't gotten in contact with me yet, but I'm not giving up because I know she is still filming episodes until the end of May!  I'm almost 21!!!

Adios readers,
Yomara :)

The EVER ANTICIPATED reason

So you're probably thinking why is Camp Promise SO important to Yomara, she's only gone one year, she's just super exaggerated about why she loves camp.  No?  Well, that is what I think you are thinking, which just proves I overanalyze myself and other people all the time...oops!

So this blog post that I have worked on for awhile gives the reasons why I LOVE camp, you see aside from the awesome activities camp involves, the main component of camp is the people.  In everyday experiences people don't understand me, they don't treat me like a human being, and I get it I really do, a wheelchair IS intimidating there is no denying that, but at camp I feel accepted, I don't feel stares or uncomfortable situations.  I don't have to worry about being me, crippled and all, and the thing is I don't mean being accepted just because I'm around other people in wheelchairs.  The thing that makes me smile the most is seeing able bodied people (the staff and counselors) develop a bond or friendship with the campers.  Even if I were to never walk and the cure is never found in my lifetime, nothing makes me happier than seeing that I have made friends and changed able bodied people's perspective of the disabled.  Ali means so much to me because she takes care of me like a sister and that is what I see at camp--friendships and smiles, as cheesy as that sounds.

So (ugh that's the third paragraph I have started with that word...gross writing skills) Ellen DeGeneres these are the people that make camp possible, they fundraise, they work for a week WITHOUT pay, and I hope all these people COME BACK THIS YEAR!!!!!

Staff

Terin: You are the woman in charge!  You make camp happen!  You fundraise like crazy and you do everything in your power to make us campers have an unforgettable experience!  You are super funny and incredibly friendly, so much so that knowing you are in charge makes everyone feel like camp is in good hands.

Libby: You are always on the go, eager to help, or simply say hello.  Whether it be accepting a pie in the face or making sure everything and everyone are where they’re supposed to be you do it with a smile.

Beth: You are the mom of camp, you are constantly walking up and down the camp site tending to everyone's needs.  When supplies arrive at camp you make sure everything goes where it is supposed to.  You are so kind to all the campers and make sure everything is sanitary, which I really appreciate.

Matt: People may say you are strict about curfew, but I appreciate you for it.  You own that golf cart as you ride across the camp site and get stuff done.  You saved us from a cougar, that just proves you're hard core.

Nick: You charge forty plus power wheelchairs every night and you are Matt's right hand man in all things awesome. 

Mark: Your photography skills are the BOMBDIGGITTY and you're my favorite cheerleader.

Stephanie (lifegaurd): You made sure we didn't drown which basically means you saved our lives, and you had the best music playing by the pool.

Steph (not lifeguard): You made camp so fun with your humor, and you help spread camp love by being camp's publicist.

The Chefs and Nesil: Thank you for the THREE meals a day, prepared hot and very tasty.  Also for cleaning up after every meal.

April: Thank you for the endless fun in Arts & Crafts and for being our shopper every night and day for things we needed last minute.

PURPLE CABIN

Allison: You are AWESOME and cheesy like me.  Thanks for all the gossip and for keeping Niki alive for a week.

Angie: You are fierce and ridiculously funny.  Thank you for being my bet buddy.

Deanie: You are the friendliest and quick to the rescue.  Thanks for wiping my eyes when they would randomly start leaking from the light bulb's strength.

Hayley: You were so sweet and welcoming.

Stephanie (purple cabin): You have super muscles and can push a wheelchair like a boss.

Gabby: You are so glamorous, but you put your campers first and that says so much about your kind heart.

Loan: You were my morning buddy, thanks for the conversations.  You are so sweet.

Emilia: You came to the purple cabin's rescue, and you are so much fun.  Your fashion is amazing.

BLUE CABIN

Travis: It was your first year and you dressed up the BEST.  You were such a great sport in all the pranks and bets.

Nick: You were super nice and helpful towards everyone.

Andrew: Your poetry is wickedly good, and you're like really funny.

GREEN CABIN

Nora: You're so sweet and welcoming to my camp first time at camp.

Shannon: You are one inspiring woman, working and volunteering at camp.  You do so much for society, I appreciate all you do, EMT, Beauty Pageant participant, med school, superwoman.

Paige: Your custom made outfits are awesome and you own at the ukelele.

Sarah: Your camper wasn't there at the beginning of the week, but you were lending a helping hand at all times.

ORANGE CABIN

Kelly: I'm still unsure why we call you "Cousin Kelly" but you are incredibly kind and patient.  You also have really nice hair.

Omar: Just being around you makes me feel like a cooler person and you're incredibly smart.

BLACK CABIN

Tim: You're humor is the best and you're a doctor so you're automatically really cool.  <---This guy gets three weeks of vacation a year, he spends one at camp.

Queenie: You are hard core awesome because you go into burning buildings and save lives.  I've also watched your expertise shine through while crushing a pill, I was impressed.

Daniel: You stayed up many a night fixing a boat you had hopes of working, just to give us campers the experience of a lifetime.  You are also hilariously funny.

The Fantastic Four post from months ago... http://yoyoyomara.blogspot.com/2012/11/compliment-letter-for-fantastic-four.html

Thank you to Joshua who rents out the camp site and the volunteer nurses that give us our medications.  From across the world many people help make camp a reality :)

I hope I didn't forget anyone, and if I did it was unintentional.

Adios readers,

Yomara :)

Honestly Tomorrow?

I have an exam tomorrow...AAAAAAAAAAAAAAAAAAAAHHHHHHHHHHHHHHHHHH I'm a horrible person!!!  I really REALLY hope to post what I wanted tomorrow, it's just so long I haven't finished writing it...March 18 get here faster...I'm complaining and that is annoying, I should stop!  Tomorrow, parting is such sweet sorrow!

Adios readers,
Yomara :)

Tomorrow?

So, I'm writing my second essay today...I honestly don't think I have ever been this busy...I wish it was Spring Break already!!!!!!!!!!!  I WILL post tomorrow, I REALLY hope so.

Adios readers,
Yomara :)

I promise I'm still alive

Good news: I'm still alive, not that I was dying, but I've just had so many papers to write this quarter that I've been really overwhelmed. I pinky promise to post Sunday, because I have something very important to say ( No, Ellen hasn't called, e-mailed, Skyped me...YET!!!). I miss writing for my own pleasure...but stay tuned!!!

Adios readers,
Yomara :)

Busy bee

I'm soooooo busy this quarter, it's crazy! I haven't heard from Ellen, so I'm still working on that. This video, watch it, it made my day!

Adios readers,
Yomara :)

Ellen DeGeneres Please Watch This!!!

My birthday is in less than 3 months, Spring Break is in 9 weeks!!! Lets get me on the Ellen show raising awareness about Camp Promise!!!!!!!!! :)

Nostalgia

I miss camp...A LOT!!!!! :) Here's a Camp Promise experience, in case you ever wondered what it was like...AWESOME!

Adios readers,
Yomara :)