Demands on Celebrity

Content Warning: assault

I feel like I'm watching Kanye West livetweet his mental and emotional decline, or at least turmoil, and I watch people continue to poke and prod him, make demands, and call him out. They believe they are still entitled to him and always will be. This prompted me to think about the demands we place on celebrities.

We, as a society, have decided that if someone is extraordinarily talented in some way that it means that we no longer have to treat them like human beings but rather like a spectacle, like an animal at a zoo.

If a person doesn't have mental health issues before they become famous, the fish bowl we force them into certainly can (and does) create them.

And we tell these individuals that that's the price they pay for being talented, for being compensated for their talent. They must sacrifice their: privacy, freedom, relationships, ability to trust easily, spontaneity, sense of safety, and often their mental health. How does this price disproportionately affect members of marginalized communities (LGBTQIAP, POC, poor, Disabled/sick/mentally ill, and intersections of them). How does it deter them from pursuing their talent and dreams?

Need I remind people that celebrities must have round-the-clock security teams to ensure their safety? That celebrities have been assaulted by fans? That celebrities and bystanders have been killed in pursuit by paparazzi and also by fans? We tell these celebrities, again, this is the risk they take, that the success, the fame, the riches, and the pursuit of their dreams outweigh the things they must sacrifice.

Average social media users (including myself) complain when we get bothered by a few trolls online, or when a handful of people target us all at once because they disagree with our content, but then we turn around and do it to celebs with no issue, with no remorse, with no awareness of the blatant hypocrisy, because we do not view a celebrity as one of us. Many of us discuss consent constantly but completely ignore consent and boundaries when it comes to celebs because we have decided that we are entitled to their bodies. They are public property and they cannot escape us or our agents that do our bidding, the paparazzi.

That's all for now!

Please comment and share!

Autistic Enough

Hello Readers!

Thank you for continuing to join me on my journey! 

I want to continue to discuss Autism Spectrum Disorder (ASD) and my experience with it, so if this appeals to you, keep reading!
I'd like to also take a moment to thank @petitpadthai for the blog post title idea! 

TRIGGER WARNING: mention of abuse 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Autism Spectrum Disorder. That second word is so crucial yet so few people (including loved ones, advocacy organizations, and health professionals) seem to acknowledge the existence of a spectrum of symptoms and presentations of the disorder. 

High Functioning Vs. Low Functioning

Currently, health care professionals characterize Autistics as either high-functioning or low-functioning with high-functioning meaning a person is able to be more independent and fit in more "appropriately" in neurotypical society and low functioning meaning a person may not be as independent and be less able to fit in "appropriately" in neurotypical society.

But here's the thing, the people who decide what is and isn't appropriate behavior aren't Autistic and the functioning labels are completely arbitrary, not to mention incredibly ableist. 

These labels pit Autistics against each other and devalue individuals' experiences. 

My Experience

When I'm doing well and functioning in a way that you deem appropriate, you erase my Autism and fail to accommodate my needs. You don't seek to understand how my brain works or how to make the world easier to navigate. You do not attempt to lessen the heavy burden you place on me with your assumptions...because I am not Autistic enough.

When I ask for an explanation because what you said doesn't make sense to me, or when I'm overwhelmed and overstimulated, or when I can't find something because the object doesn't look like what thought it should, or I don't want to spend time with people because it's exhausting to constantly monitor myself...suddenly I am too Autistic. 

I am always Autistic. My excess of neural connections will not suddenly disappear just because they make you uncomfortable. My Autism is not diminished, it will not be erased because I have made an incredible effort to fit into this hostile society that only values neurotypicality and literally abuses** Autistic people until we display your desired behavior.

Sometimes, you say I don't seem Autistic, and yet so often when I've been abused and bullied by my peers (and even adults) it has been for being Autistic.

I guess my question for you is...

#DidISeemAutisticWhen in 3rd grade, my teacher put my desk in a corner and mocked my accommodations in front of the class?

#DidISeemAutisticWhen I was in 4th grade and started pulling out my hair and eyelashes as a form of stimming? 

#DidISeemAutisticWhen in 6th grade when my teacher got sick of me and locked me in a dark closet for over 10 minutes?

#DidISeemAutisticWhen I couldn't read facial expressions or body language? 

#DidISeemAutisticWhen in 9th grade when my teacher planned with the rest of the class to mock my Autism? Allowing all of the students to come in late and imitate me? Falling out of their desks, dropping their pens, asking questions.

#DidISeemAutisticWhen in 11th grade students locked me in a cabinet as a prank? 

I am Autistic enough. 

My Journey With Autism

I had this blanket as a child that I called Woobie that had lace trim with satin ribbon running through it.  When I rubbed that satin ribbon between my forefinger and thumb, it was as if my whole existence shrunk down to a pinpoint. All the noise and chaos in my body was drowned out by that feeling.

When I was 8 years old I was diagnosed with Non-Verbal Learning Disability. When my mom asked the doctor what that meant, he replied that it was why I was such a freak. Over the course of my life I've been misdiagnosed with a lot of mental health and behavioral conditions but Non-Verbal Learning Disability, while wrong, was actually closer to the truth than most.

I was an extremely unusual child that didn't fit in in any social setting including my own home and school. I couldn't read body language at all so I missed those subtle clues that people were starting to get upset with me, or that posture that would have let me know that that person was annoyed and I shouldn't go up to them in such an upbeat and effusive manner. At that point of my life though, I didn't know that I was missing social skills. I just knew that I was being bullied and had no friends.
It wasn't until much later in life when I realized I had no social skills and I tried to teach myself body language that I started to put the pieces together.

You see, while there are books teaching people how to read body language, apparently that skill is inherent, or at least, it's supposed to be. But when I tried to find books to learn social skills as an adult? Almost impossible. And the more I looked, the more books I found for certain adults, so I finally checked out one of them, specifically "Be Different" by John Elder Robison. When I read that book everything made sense.

When I met with my psychiatrist the following week, I told her I thought I had Asperger's Syndrome. She asked me why I thought so and when I got half way through my reasoning, she stopped me and said, "yes." I asked her if I needed to take a test. She said there was no need and she didn't know why she hadn't seen it before.

I'm IsaJennie and I'm Autistic. I'm on the Autism spectrum. I don't want to be cured. Autism makes me who I am. My brain is different. It functions in a spectacularly complex way that neurotypical people cannot fathom and it is wonderful. What I want to "cure" is the way I am treated by neurotypical people. I want to make the world easier to live in for Autistic people.

Ableism..What The Heck Is It?

Dear Reader,
Addressing issues of inequality is not about being politically correct. In fact, many of those politically correct terms so many people use are actually just the ill-informed attempts of people (who not are quite knowledgable about real issues) to feel like they are doing something useful for "those poor tragic people." I do not use words for the sake of being PC or because my friends use them. I think about my word choice because the words we use have meaning and impact on the people around us. Words matter. My actions matter. If you disagree, that's fine, but I implore you to at least attempt to read this with the mindset that I most likely have a different life experience than you do and my life experience is valid, just like yours is. You do not have to know my pain and life to acknowledge that it exists. 

I've been putting off writing this for months, maybe longer. Why? Because ableism is a constant in my life and it encompasses so much. Trying to define ableism is like trying to capture a dark sky full of stars with a cheap camera...you might capture some of the light but you won't capture that awe-inspiring feeling of being so small yet so big. You won't know what you're looking at. I thought I'd try though. Bear with me and please ask questions in the comment section so I can address any shortcomings, make the post more understandable, etc. I'll mostly be defining ableism using examples as I've always found that helpful and it makes it more tangible! I hope you enjoy and share this post! 
Please note that while I am solely addressing ableism in a vacuum in this post, it absolutely DOES NOT exist in a vacuum. Intersections of oppression exist and make ableism more difficult. The way each person experiences disability is unique and is valid.
CONTENT NOTE: this post could be potentially triggering. Mentions of ableism, non-specific mentions of abuse

~*~

Ableism 

What Does The Dictionary Say?
n. discrimination against people with disabilities. 
n. a set of practices or beliefs that set inferior value to a person with a real or perceived disability (including mental, physical, developmental, etc). Via StopAbleism.Org


What Makes An -Ism?
For something to be a true -ism, it has to go BEYOND the individual! This isn't about one bigot not letting a Blind man with a guide dog into his restaurant, though this is a real problem that happens daily.
Ableism is bigger than individual behavior and is quite literally built into our society. Ableism is about power and privilege versus oppression. In fact, ableism is one of the oldest forms of oppression. Abled/non-Disabled (ND) people did not do anything special to be born Abled/ND, they just were, and yet, society values them more for the way they are. ND people earn exponentially more money (post to come), are able to access public and private spaces easily (their body and design of space allows them to), are viewed as equal (on the axis of Dis/ability), are seen as capable and autonomous, etc. (You can read more about privilege and oppression here: Privilege, Oppression, and Everything In Between.)


The Words You Use
How often do you use these words: d*mb, st*pid, r*tard/ed, -t*rd, m*ntal, cr*zy, ps*cho, n*ts, handicap, cr*pple/d, handicapable, differently-abled?

If you're like most people, I'm guessing you use them every day, if not multiple times a day. I'm not writing this to judge you or to make you feel guilty, I'm writing this so you can be educated on something that has a measurably negative impact on the lives of real people (in your life) with real feelings. I'm writing this so that at the very least, you take a moment to think on your words before you use them.
So. Why is it not just "bad" but oppressive to use these words?

 First of all, many of these words are rooted in historical abuse (cr*ppled, h*ndicap, m*ntal, cr*azy, ps*cho) and we haven't forgotten. Those words are still used negatively against Disabled people.

Secondly, these words are used as value judgments. Examine how you and others treat people after labeling someone cr*zy or st*pid. It suddenly becomes okay to no longer listen to them or treat them with respect. It becomes okay to treat them as lesser than and it is honestly terrifying to me that the act of verbally or otherwise labeling someone with a word associated with disability makes it acceptable to heap all manners of abuse on them.

Thirdly, when it comes to terms that relate to intellect, you are saying that something or someone is less worthy of respect, of dignity, of kindness if it/they is perceived as less intelligent, on the flip side, you are saying that something or someone is more worthy of respect, of dignity, of kindness if it/they is perceived as more intelligent. Even if you're referring to an object, those words transfer to real people. That same logic, that the more intelligent the more worthy of basic human decency and kindness and the less intelligent the less worthy, has been used for literally thousands of years to excuse the most heinous crimes against Disabled people, specifically intellectually Disabled people.

Also, though I didn't include them in the list, using terms like Blind and Deaf for ANYTHING other than someone who is Blind or Deaf is ableist!

Now, I'm sure you're wondering why I included the terms handicapable and differently abled. SOME Disabled people like them but the vast majority do not and the reason is two-fold.
1) they're inaccurate. We are not differently abled, that is to say, we don't have some awe-inspiring other ability that you non-Disabled folks don't have. To quote my amazing friend "It's not like I walk on my hands!"
2) It erases our very real disabilities and the role society plays in their maintenance.

Even if you're not using the above words in a directly negative way, that doesn't change their original meaning and it doesn't change that they still hurt people. .

Finally, you may be thinking to yourself "they're just words...they're just feelings...people are too sensitive." While I think that that is an incredibly upsetting opinion to have, I'll pretend that I agree for a moment. If you don't care about feelings, consider this: those words that you utter so casually because you can't be bothered to use the word you actually mean? Those words are almost always used when Disabled people are being beaten and abused by "loved" ones and even strangers on the street (70% of Disabled people have reported being abused). So those words are not "just words" they are triggers and they are violence, even if you don't mean them to be.

So instead of...

• ...that party was crazy last night!
• try: that party was ridiculous/too much/wild/out of control
• ...that's a stupid argument!
• try: that's an ill-informed/ignorant/illogical/ill-thought-out/incorrect/tragic/poor argument
• ...the weather is bipolar!
• try: the weather is all over the place/mercurial/hot and cold/indecisive/rude
• ..."the political blindness of millennials" or "Deaf to objections"
• try: "the political ignorance of milenials" or "obstinate to objections"

Examine your word choice. It may take some practice, it's easier not to do it at all, but not only are you making a positive impact on those around you, you're also actually saying what you mean! Maybe you can do what I did and institute a jar in your home and every time you or your housemate says one of the above terms, some sum of money goes in the jar. The proceeds in our jar went to a disability charity! 

Let's Get Specific

(* denotes it actually happened to me)

• Ableism is having to prove you're Disabled/sick so you can get "accommodations" while simultaneously having to prove you're not too Disabled/sick so your teachers coerce you into dropping the course*

• Ableism is your teacher saying that people who don't exhibit appropriate body language (squatting down, open body language, etc) in the child study lab will be marked down and when you tell her why you don't do it, being told, in front of your peers, that the teacher is "having trouble (believing) with that"...and still getting marked down*

• Ableism is being so sick that you are in and out of the ER, 2 weeks post major surgery, getting procedures done, but still doing assignments, and being told to do a medical withdrawal for missing lab classes...and then being failed in the course despite trying to do a medical withdrawal*

• Ableism is not providing an ASL translator at events because it's too expensive

• Ableism is not having a audio descriptions available on a show ABOUT A BLIND PROTAGONIST 

• Ableism is constantly being asked "don't you want to be healthy and take the stairs"*

• Ableism is being accused of faking for being able to walk while using a wheelchair*

• Ableism is being accused of being a drug addict for being thing due to illness and for having stomach problems*

• Ableism is asking someone "OMG ARE YOU BLIND!"

• Ableism is joking about a life threatening disease someone has*

• Ableism is valuing some Disabled people over others because they don't need accommodations 

• Ableism is valuing some Disabled people over others because they have normative bodies (in this case, meaning they look ND)

• Ableism is valuing some Disabled people over others because their disability doesn't make you uncomfortable.*

• Ableism is valuing some Disabled people over others because they allow you to use ableist language.*

• Ableism is valuing some Disabled people over others because they fit your idea of what disability is.

• Ableism is telling someone who is very sick "but you don't look sick" thus downplaying their illness*

• Ableism is telling someone who is thin due to extreme illness that you want their illness*

• Ableism  is dismissing someone's concerns because "they should get it"*

• Ableism is assuming someone is/isn't Disabled

• Ableism is using terms like Blind and Deaf as metaphors for situations...implying that they are a choice

• Ableism is using the phrase "stand for ____" instead of "solidarity with _____" 

• Ableism is assuming walking is universal 

• Ableism is being unable to access a classroom and class content

• Ableism is thinking it's okay to say and do ableist things because no one Disabled is around (or so you think).*

• Ableism is someone saying that they are more Disabled (because of their unique oppression) than a Disabled white woman when they aren't Disabled at all.*

• Ableism is denying Disabled people their sexual selves while simultaneously pathologizing them if they are not sexually active.

• Ableism is thinking that anyone who chooses to be in a relationship with a Disabled person is a saint.

• Ableism is sympathizing with abusive parents of Disabled kids because really, how much can one person take?  

• Ableism is having a professor not considering you missing class because you dislocated your shoulder valid but telling a kid who drunkenly cut his hand on a beer bottle that he didn't need to come to class.*

• Ableism is the entire education system.

• Ableism is the belief that physical disability looks a certain way. 
• 
  

Privilege, Oppression, & Everything In Between

Almost everyone has privilege, and almost everyone has oppressions. These are terms often used in the social justice realm and I thought I would take the time to break these terms down from my point of view.

PRIVILEGE
When you tell someone they have privilege, often times their reaction is "But I'm not rich! I've gotten everything I have because I work hard!" In this case, people are thinking of privilege as it relates to wealth. In reality, when people, especially people involved in social justice work or marginalized communities, refer to privilege, they're referring to a social advantage that is only available to certain groups. Admitting you have privilege isn't denying any hard work you've had to do to get to where you are, it is simply admitting that, through no fault of your own, society values some aspect of you that you have no control over and this has given you certain advantages.

Under the heading of Examining Your Privilege & Oppression you can find some tips for coming to terms with privilege.

OPPRESSION

Oppression is the counterpoint to privilege. In a phrase, it is unjust treatment, particularly of a group of people.

There is a tendency in the United States and other "developed" countries, to downplay the extent to which oppression exists. I believe this has to do with the values Americans in particular claim. It is very difficult to reconcile the degree of oppression we have in this country with our values of freedom, equality, and justice for all. Despite this contradiction though, oppression does exist and it has been studied extensively. I can direct you to scientific experiments, Department of Justice reports, books, survey responses, people's personal stories...all of these sources prove that oppression is alive and well. Oppression is also not a competition. I frequently hear people say that women in the United States aren't oppressed because women in Pakistan have it worse. There is no prize for being the Most Oppressed and it does no good to compare incomparable struggles. Oppression exists everywhere and it needs to be addressed. It is best to focus on the oppression we can most directly influence and then signal boost the struggles of those with oppressions we don't experience.

It is important to note that the oppressions and -isms discussed are SYSTEMIC and SYSTEMATIC meaning they are built into our institutions and our society. When I discuss racism, I do not use the dictionary definition but rather the social justice definition of racism. When we use the dictionary definition of racism, we are erasing the long and ugly history it has and decentering those that experience it most. White people love to claim that we experience racism because we are called crackers. Racism is deeper than this. The deliberate genocide and enslavement of Brown and Black bodies by our society is racism. The levels of police brutality experienced by Black and Brown bodies is racism. Being called a honky is not. However, PLEASE don't take my word for it! I am white and it's really not my place to discuss racism so please check out racismschool.tumblr.com and this amazing TedTalk The Power of Privilege

AXES

Privilege and oppression come in many different forms that exist on an intersecting continuum. At one end, there is privilege, and on the other end, oppression. Axes of privilege/oppression include, but are not limited to: race/ethnicity, dis/ability, religion, sex, gender, age, class, and size. I have created a matrix that should help clarify how they all coexist and intersect. There are some fuzzy areas and plenty of overlap...consider the matrix a rough visual! 

 *Please note that in dominant US society, sex is viewed as a binary so I only included man and woman as options for sex although that does not reflect my own views.*

EXAMINING YOUR PRIVILEGE AND OPPRESSION
Often, those that have privilege are completely unaware that they have it and of the advantages that have been afforded to them. Finding out you have privilege often comes as a shock and it can cause many people to react negatively: to lash out, to shut down, and to deny what the person is saying without taking the time to listen and process. STOP! Take a breath! Clear your mind. Now put yourself in the other person's shoes and forget everything you thought you knew. Now listen and learn!

CHECK YOURSELF CONSTANTLY! Here's a great source to examine how much privilege you have: The Social Privilege Test

Your privilege can help ease some of your oppression and your oppression can whittle away some of your privilege. Where you fall may change and may depend on the groups you're in. 

FULL DISCLOSURE
I urge you all to examine your privilege and oppression and in the spirit of open sharing and exploration, allow me to tell you where I fit:

Privileges: White, Educated, Cisgender (not trans), Upper Class, Gender-conforming

Oppressions: Young Woman, Pansexual, Disabled, Autistic, Chronically ill, Atheist

--------------------------------------

Any questions? Comments? Suggestions?

I plan to discuss ableism next so stay tuned for that! 

That/s All For Now Folks, 

-IsaJennie

2014…What Happened?

It's been a long time since I've last posted so I'm sure you're all wondering...What the heck happened in 2014?! To sum it all up: A LOT!
This post is just a quick overview of the highs and lows of the last twelve months!

Highs:
- elected to ASU undergraduate student government
- re-elected president of the LGBTQA Coalition (now the Rainbow Coalition)
- moved back into my condo with one of my best friends
- 2280 Twitter followers (@IsaJennie)

- I GOT GUMBY THE CAT!

Lows:
- impeached from ASU undergraduate student government
   Read more: article that started it all >>>ASU Black and African Coalition, student government fight blackface, ASU Senator impeached for violating Tempe USG guidelines, Huffington Post Article, ASU Student Senator Impeached for Speaking to State Press Without Informing Her Superiors, ASU’s Tempe Undergraduate Student Government media guidelines unfairly limit dissent, Student Press Law Center Article, Legal experts defend impeached ASU student government senator Isabelle Murray’s point of view

- had to have an emergency appendectomy (turns out I didn't have acute appendicitis but rather I have endometriosis that had completely grown over my appendix)
- f*cked up on Twitter with my privilege
- my Ehlers-Danlos Syndrome is still kicking my ass

So…that's my 2014 in a nutshell! Any questions? Comments?

I really need suggestions for blog topics! Please either leave comments on here, email me, or send me suggestions on Twitter!

Lots of <3

-IsaJennie

Whaddya wanna see?

Hello Readers!

     I'm going to be blogging at least once a week (and I'm thinking about starting a YouTube channel) but I'm not sure what I should focus on? I renamed the blog "The Adventures of IsaJennie" because the intention was that this blog would be about my thoughts, observations, things I'm passionate about, and occasionally, about my past and health. But I feel like it needs more focus...I mean, who wants to read about ONE white woman? I'm really nothing special (except for the genetic disease) and I'd rather not bore anyone.
   
    So..the question remains... what would you like to see from this blog? From a potential YouTube channel? Any ideas? Oh! Any ideas on the blog design? Do you like what you see or do you think an update is in order? What would you like to see there?

    I'd love to get your feedback so please comment and keep reading!

-IsaJennie

An Open Letter to Jane Doe

Background:

Jane Doe is a 16-year-old trans girl of color that is currently in an adult prison in solitary confinement and has been for over 50 days. She is there despite not having been charged with any crime. 

For more information about Jane Doe: We Must Not Forget Jane Doe's Humanity

To write a letter to the governor: Email Governor Malloy

To write a letter to the Commissioner for the Department of Child Services: Email Commissioner Joette Katz

To contact Jane Doe: Justice4JaneDoe@gmail.com

Open Letter to Jane Doe:

Dear Jane Doe,

    My name is Jennie (I'm 25) and I'm one of the thousands of people that are supporting you. I know you must feel incredibly alone right now. I know that in your letter to the governor you wrote that you felt forgotten and thrown away...I know that the so-called "justice" system is neglecting you...I know that you are almost always alone physically, but despite all of that, I want to let you know that in spirit, you are surrounded by people that care about you and that are fighting to get you out of the horrible place that you've found yourself in, through no fault of your own. Most of us have never met you, don't even know your name, but we care. We will not forget you. You are not trash to us but a wonderful teenage girl that deserves so much more than what life has given her. There are people around the world that are writing the governor, signing petitions, writing the commissioner, and spreading the word about the injustice that you are experiencing right now. 

    I'm a college student and I also have the privilege of being the president of my university's LGBTQA Coalition and I have let everyone in our coalition, and everyone I know outside of the coalition, know about what is happening to you. I, along with thousands of others, am tweeting #JusticeForJane every day and I've let all of my Facebook friends know what is going on. People are writing articles about your mistreatment by the "justice" system. Organizations are fighting for you. You are not forgotten. We will not rest until you are free and in a safe and healthy place where you don't have to be scared or lonely. 

    I've told you what we are trying to do for you, but if you need anything that you're not getting (other than freedom, which we're trying to get for you), please let me know what it is so I, along with others, can provide it for you!

     I know that the world must seem like a horrible place to you given what you've experienced, but there is good out there. Don't let the darkness that you're in right now dim the brilliant light inside of you. 

   

 Hang in there Jane! Stay strong! I hope to hear from you soon! 

Sincerely, 

Jennie

It's Been A Long Time...

Wow!
It's been a LOOOOOONG time since I've blogged. So much has changed since I've blogged last. I'm still in college, I'm still chronically ill, and I'm still writing, though now it's mostly on Twitter.
The biggest piece of news (other than the fact that I no longer have an appendix and I kinda have a dog now...and an awesome BFF Shelby-Lynn) is that I'm now (for the second time) the president of my university's LGBTQA Coalition and have been elected senator for Undergraduate Student Government. I have always been passionate about social justice and LGBTQIA rights, but after my diagnosis of Ehlers-Danlos Syndrome, I've become even more involved. As I was laying in my bed that year out of school, in constant pain and struggling to find a reason to not give up, I discovered activism and now I'm hooked. Everyone deserves rights. Everyone deserves respect and dignity and equal opportunities...and I'm working to make that a reality! So...stay tuned!

Hello 2012!

Hello my dear readers! If there are  any of you still left!

I hope you all had a positively fabulous time this holiday season! Like most people I've reflected on the past year and resolved to do some things differently this year!

I think it's safe to say that this past year has been a life-changing year to say the very least; going from thinking and generally feeling like I was perfectly normal to getting sick over the summer and then finding out I have an incurable genetic disease that will bring degenerative changes, as well as a most likely permanent autonomic nervous system, was quite a shift in my perception of who I am and what my future holds. I went from being a conscientious student to being a patient...I've decided to take this spring semester off as well...

Well, this year I'm starting things off in Pensacola, FL taking care of my adorable three-year-old niece Annika for about a month and then who knows? I do know that I need to quit wallowing in my physical and mental pain and get on with things. The only thing I have planned beyond nannying is going back to school in the fall. I would like to take a true vacation where I can totally relax and not worry about doctors appointments, responsibilities, or feeling guilty if all I want to do is lounge around and read books!

I've also made some resolutions like so many other people!

1. Blog at least twice a week
2. Do physical therapy exercises every day.
3. Follow doctor's orders: my new high sodium diet and other lifestyle changes for my POTS
4. Live instead of exist!
5. Journal every day.
6. Get to a more comfortable weight.

Now here are my questions to you, my dear readers: What have you learned this past year and what do you plan to do this new year? Have you resolved to do things differently? If so, what? How will you keep your resolutions?

Hope to hear from you soon!! 

That's all for now folks! Keep reading! 

-RRR

Finally! A diagnosis!

       Oh dear (bread and beer| if we were dead | we wouldn't be here) it's been a super long time since I've posted. My b my b. =(

        So much to say and so little time (especially since I'm 'sposed to be catching up with my school work).
To catch you up with what's been going on...:

"Last time on 'The Story of A Girl'..."

She was hurt; she had fallen and she couldn't get up. 

Left to die on the cold tile floor of her bathroom, covered in makeup...

Until...she got up.

Her brand new white bathroom rug was covered in carnage--makeup everywhere.

Her back was bleeding, her ribs aching, her head pounding.

She had been sick for awhile now...

With no explanation for what was causing all of the seemingly unrelated health issues

No explanation until....

She saw a specialist.

This is her story.

This is "The Story of a Girl"

(cue intro music)

          Hehehe. It made me giggle, therefore it has to be funny, because it's not like I'm biased or anything! Lol. Annnyyyywhhooo...I finally found out what's wrong with me, and apparently, has been wrong with me my whole life. Alas, if only my family would have listened to me one of the ba-ba-ba-bazillion times I told them something wasn't right....like the time (one of many) I told my dad that it felt like my hip was popping out of place (of course he responded that wasn't possible); apparently, not only is it possible, it's been happening to me for years! My shoulders are even worse (as are my knees, elbows and wrists); I can pop those babies out of place just by moving normally. Nothing says "I'm an old lady trapped in the body of a 22-year-old college student" quite like having your whole body smell of Bengay and then...snap, crackling, and popping louder than a bowl of Rice Krispies as you kneel down on a kneeler in Church...next to an old lady whose body is much quieter than yours. 

           Damn...I got off track again (typical). Like I said, I've known for years something wasn't right and I didn't think it was a coincidence or just bad luck that I had continuous health issues. I figured it was all related, since the chances of them not being related seemed next to impossible. In the last couple of weeks I've researched some things and guess what, I correctly diagnosed myself with a rare genetic disease. (Of course, my parents thought I was just being a hypochondriac and even now they aren't *quite* believing..."oh 'they' of little faith). I originally suspected I had a condition known as Marfan Syndrome, but after ruling that out it was pretty obvious, to me at least, that I had Ehler-Danlos Syndrome.

        When I met with my geneticist he confirmed it: I have Ehler-Danlos Syndrome or (EDS). It's a pretty rare genetic connective tissue disorder. When I told some of my so-called-"friends" that I'd been diagnosed, they thought it meant it affected my skin...(and also that I was an attention whore and a hypochondriac...as well as some other things that might offend some readers). 

So let me clarify, connective tissue is everywhere in the human body. Ever hear of collagen? Yeah, the type of EDS that I was diagnosed with (though I think they got the type wrong) occurs because of "a defect in the synthesis of collagen". This defect affects my joints (the ligaments and tendons around it), my blood vessels, my organs (including my skin), etc. People don't seem to think this is a big deal, but people with EDS are at  a much higher risk for aneurysms (including abdominal aortic aneurysms); this is a common cause of death (among those with EDS) most often seen in a person's 20's and 30's. EDS also affects the heart and the brain (in the brain it can lead to migraines, and POTS...both of which I either have or am suspected of having). As I age I'm most likely going to develop osteoarthritis (if I don't already have it) and osteoporosis. I could list all of the health issues that come along with EDS (like delayed gastric emptying, acid reflux (both of which I have)) but we could be here for a very long time. So suffice it to say: "my shit's fucked up" (pardon my French)

       The great irony is, not only is what I have rare, but among people with EDS, the degree of hypermobility (or range of motion greater than normal) I have in almost all of my joints, as well as the number of joints the disease affects and what joints it affects (notably my spine and neck...and every other major joint) is EXTREMELY rare. So basically I'm a freak among freaks :-p. My sister had come with me to my appointment and she said, "we did't need a doctor to tell us you're special...we've always known you were 'extra special'." It made me laugh. 

     I have mixed feelings about my diagnosis...it's nice to finally have a diagnosis because I can quit searching and now I have resources and a community of support (the Ehler-Danlos National Foundation); it's also allowed me to let go of the past and start living in the present because, honestly, who knows how long I have left; who knows how long anyone has left? I've learned life is too short to worry about hurtful, rude people or makeup for that matter. It's too short to waste any time at all. I contemplated taking a semester off of school but then I realized, I don't want to waste time, even time taking care of my health, because I want to be a doctor and I feel like I'm already racing an hourglass that is far from full. Of course, I've talked about all of the good things; I feel like the bad things are pretty obvious: having an incurable, relatively untreatable genetic disease sucks! I'm going to be in constant pain my whole life, and chances are, it's going to get worse. I don't know how much longer I'm going to be able to pretend I'm a normal healthy college girl; how much longer I can keep faking it. I don't even know how much longer my joints are going to hold up because, right now, I feel like throwing in the towel and getting a wheelchair my hips hurt so badly. 

        I have learned though, well, I suppose I have ALWAYS KNOWN, that someone always has it worse and that complaining does absolutely nothing, except, of course, pissing off my mom and dad. I took care of a man who had what I consider to be the worst disease in the world: Amyotrophic Lateral Sclerois (ALS) or Lou Gehrig's Disease. It is the worst way to die, robbed of your ability to walk or move at all, talk, eat, or even breathe unaided, and through it all being in constant pain with seemingly endless muscle spasms. 

And the life expectancy after diagnosis? 1-3 years *typically* after diagnosis, although lately I've heard about quite a few people who died within months of diagnosis. But the man I took care of, Stuart, never complained (he was able to talk by sacrificing some of his air (he used a smaller trach tube even though it meant he could never get enough air)) instead he spent his remaining time on Earth helping others: writing letters with messages of hope, volunteering with the ALS Association, being a mentor to me, etc. 

I'm going to try much harder to live the way he taught me to live. He always told me: "do well my gift" and that's what I'm going to do with whatever time I have been given.

        My plan? Go to class and learn all that I can, work to help those with ALS and their families, make people smile, go to doctors' appointments and physical therapy, become a doctor so I can help people with ALS...I'm going to do well (with a smile on my face).

    (so...don't cry for me...blog readers(?)) 

Thanks for listening. Have a fantabulous day! 

--Jennie the Nerdette 

Help I've Fallen & I Can't Get Up

Dear RRReaders,

    Ouch so the title of my blog post made me chortle (you know those horribly acted Life Alert commercials?Heeeelllpp I've fallen and I can't get up...*extend arm weakly*) and laughing hurt like a bi-atch. (And when I yelled “ow” from the pain of laughing I guess I sounded like a cat because my cat started meowing at me (although that could be because he was concerned because he can always sense when I'm in pain)). 

                             

      Anywho... back to the point...I feel like I should win an award because Tuesday (I think...) I fell and couldn't get up when I attempted to get out of bed to go to the bathroom. I had just woken up after a long Sleeping Beauty-esque sleep.  Picture it: Tempe, Arizona; the day: August 2nd, 2011

          I woke up as I heard “Don’t worry ‘bout a thing ‘cuz every little thing’s gonna be alright” for the umpteenth time. Bob Marley’s Three Little Birds is my mom’s ringtone (every Saturday she’d crank up the Bob and all of us (all 4 kids and my mom and dad) would clean the house top to bottom). I immediately texted her back because I hate phone calls, and I assured her, yes I was alive despite the fact I’d been asleep for 24+ hours. She relayed the message to my dad.

          I spent a little more time waking up until the “urgent pressure on my bladder” assured me I could wait no longer to make a much needed bathroom run…exactly 3 feet away from my bed.

So I crawl out from under my little burrow and as I approach the porcelain pedestal, I start feeling funky (ahem, funkier) and my vision starts dancing, going spotty and fading,  and my body starts shaking and twitching and then my body goes numb and I lose all the strength in my body…Crap...I can't lean on my towel bar or I'll rip it out of the wall. I can just picture that happening so vividly. I should try to make it back to bed before I collapse.

 Next thing I know, I’m waking up and, praise the Lord Hallelujah, I didn’t wet myself haha, but no seriously, I wake up sobbing hysterically and my back and ribs and my HEAD are throbbing and I’m covered in makeup (no, not my face, my body….I guess I pulled all my makeup off the counter (when I fell down and I had  just washed my white rug). And the first thing I think is FUCK (pardon my French) my mom is going to kill me…there’s no way I didn’t get another concussion** (see note).

          As I attempt to haul myself up, my back is screaming, so I pull my shirt up and I see big cuts up and down my back. My head starts throbbing…the throbbing morphs into a massive migraine: grab some Zomig, pull cap, insert into nose, pull trigger, toss away, pinch nose, tilt head forward, wait for relief. My ribs are so tender and sore it hurts to breath. As the day wears on it just gets worse.

_____________________________

          Today aka Wednesday (since I haven't been to bed...can't sleep), I can’t touch (or even think about touching) my ribs and there are 2 big lumps on my head. I’m thinking I hit my head on the wall when I went down and then again on the floor.

          I guess I can kiss my dreams of winning Miss America good-bye since I’m pretty sure you need poise for that haha! But no, seriously, I’ve been having this weird shaking dizziness for years and my mom says it’s because I stand up too fast…but nowadays, I can’t stand up fast lol so hmm (*strokes imaginary beard*)!

Who wants to see a picture of my back?

not my most flattering pic
& I didn't feel like taking a pic today of the bruising and bumps

That's All For Now Folks! Keep Reading and Commenting! Muwah!

-<3 RRR

**I had my first head injury (traumatic brain injury)@ age 8 months…then age 8…with multiple concussions in between (age 6, 9 &12, etc)  and a major concussion @ age 17 and then after that @ ages 18, 19, & 20, &22. & Even a slight head bump now has a profound impact.

Health Update

Dear Readers,

If you know me and are close to me in real life, then you probably know I haven't been doing super fabulously health-wise. If you don't know me in real life, well, you're just going to get to know me a whole lot better haha! 

      Have you been waiting with bated breath to find out the results of my fun tests from Wednesday?  I'm guessing you probably weren't lol but I'll pretend, just for a moment, that you were all on the edges of your seats! The whole testing process was as pleasant as can be expected and the staff at the hospital was top-notch!

It was so funny--as I was wheeled into the procedure room and they hooked me  up to "my own private oxygen bar" (as the nurse called it--shower curtain flavor she said) the doctor asked me: "What's been going on?" I, rather stupidly I might add, replied,"Do you mean in general?" The doctor laughed,"Oh yeah, what'd you do last night, what's your favorite TV show, what are your hopes and dreams! Silly, I meant what brought you to my procedure room?"

That definitely lightened the mood and after describing my inability to eat or drink and the constant acid reflux and heartburn I was experiencing despite taking Prilosec twice a day and chugging Maalox like a frat guy chugs cheap beer, they paused to make sure I was aware of the procedure they were doing, etc and then they administered some sedating medication and put a camera down my throat...and up elsewhere! Touchdown for the doctor!!!
_________________________________________________________________

When I woke up in the recovery room the first thing I asked the nice nurse as I opened my eyes was: "am I a hypochondriac?"
She looked at me quizzically and responded: "No (dramatic pause) there were some findings. Your father is on his way. You should rest."

Later, when my dad strode into the room, seeming to fill up the whole space with his tall frame and air of authority, my doctor came in with my test results and nifty pictures of my stomach and intestines. She spoke to my dad and my father complimented her on the recovery facilities: “These are way nicer than the ones we have at the hospital.”

 She told my dad how much sedation medication she had given me and my dad gave a low whistle and said to me; "You won't remember any of this or anything you studied before the procedure when you wake up tomorrow, the medicine causes antegrade amnesia." Fabulous, I thought to myself, I could have been relaxing when they ran that IV and gave me those enemas instead of studying. 

Then the doctor and my dad got down to business and my dad reviewed the results. I heard bits and pieces: "scalloping" "intestines""hernia" "motility""more testing"....and then I just slept. When the doctor left the nurse asked if I wanted juice. My dad told me to say yes so I said yes.

As the nurse went to get juice my dad told me: "They won't let you leave until you drink 2 glasses of juice." So even though I was scared to drink the juice (yep...scared. to. drink. juice (hey man acid reflux hurts)) I sucked it up and chugged that juice faster than you can say...chug. Then the nurse told me I could get dressed and my dad took me home and I slept all that day and the next day (after briefly waking up at 3 am and thinking it was 3 pm and getting really scared).

When I was more with it, i looked at the nifty pictures they took and read the results: Hiatal hernia (stomach in my esophogas) and scalloping of my intestines (which could possibly indicate Celiac disease).

                                        Here's a nifty pic of my stomach:

                               
___________________________________________________________________

On Friday I met with my GI guy, Dr. Patel, and he said I don't have Celiac Disease (yay!!!!) but during the tests, my stomach didn't move at all and there was still food matter in it (remember I haven't eaten in forever) so he's pretty worried about that. See...your stomach breaks down food by churning (contracting and relaxing) as well as by chemical (acid) means. But they're worried my stomach isn't contracting which means my food is just sitting in my stomach for days on end...but they won't know for sure until they do  more tests (a 7 hour one) and I have to wait until AFTER my class finishes on August 5th because my teacher hates me and won't let me miss any more class!!

But yep, that's what's going on in my tummy tum!!!

Are you asleep and drooling on your computer yet?? ;-)

Well, stay tuned for more fun stuff haha! Tomorrow my dad and I are meeting with my professor (she wants all sorts of medical documentation that she by law can't have so that should be really interesting!!)

But that's all for now folks! Keep reading!!

-RRR

Poetry Post

So I finally tackled some of the squalor that has become my condo and as I was cleaning my office I unearthed copies of the poetry magazine from my high school. As I thumbed through issue after issue and read over some of my old work, I realized I haven't written any poetry in eons! Which is downright bizarre considering I have stacks of notebooks filled with my poetry. It used to be my refuge; my solace. So I sat down the other night, slightly sleep-deprived and I wrote some poems. I hope you like them. 
______________________________________________________________________________________________


We are Numbers 


We are a series of numbers
40960585
85327403120
Social Security number
Drivers license number
Student ID number
Patient number

You take an exam,
You fill in your number
Your name, irrelevant

You call your doctor
You tell her your patient number
Your name, an afterthought

We are just another number in an endless sea of numbers
Undulating wildly
Ebbing and flowing
But always a number
Just 1 of many

__________________________________________________________________________________

Dreams


Dreams stay with me like a heavy fog that won't lift
Won't let go
Entangling in my reality
Blurring the lines
Which is which
Each leaking into the next
Until
Reality, Dream, Indiscernible
Until
They become totally, utterly enmeshed
Become one singular entity

What happened
What didn't
What was dreamt
What was done

That once faint  blurred line
Obliterated
__________________________________________________________________________________

So what did you think??


That's all for now folks!
Keep reading!
-RRR

We Want What We Can't Have

We want what we can't have; it's a fact! If you ever want a 3-year-old boy to eat his food, just use reverse psychology and tell him he can't eat it and watch how fast he eats his dinner.  When we're kids we want each other's toy cars and Barbie dolls, when we're adults, it's each other's boyfriends and spouses. The whole world is filled with toddlers who want what isn't theirs to have.

I am no exception. A lot of times, people will ask me how I have time for a boyfriend. I usually laugh and say I don't. The dad of the little boy and girl I now nanny for asked me the other day, "You're so busy between working and then school in the fall and Quiz Bowl...how do you have time for a love life?" I answered him honestly: "What love life?" This made him laugh but it's true.

I don't date, not that many people try to sway me lol. But every once in a while, I want what I can't have, what I don't really have time for; sometimes I think it would be so fun just to date some guy (and by "some guy" I mean some guy that's "just right"). I mean, I'm in college right? But I have rules for these kinds of things (and no it's not nearly as boring as it sounds); I don't date. I can hang out with a guy. I can have a great time with a guy, but I don't date. Aren't I just the little masochist? Constantly tempting myself but never letting myself get what I want.

As I write this, there's a certain song that's running through my head. You know the one. By the Rolling Stones? You can't always get what you waaant. You can't always get what you wa-ant. You can't always get what you wa-ant, but if you try sometimes well you might find... you get what you neeed oh yeah!  Except, am I getting what I need?


That's all for now folks
Stay tuned for more Randomocity and keep reading!
-RRR

Oh So Sorry

How long has it been since I've written?
I'm not even sure.
I see I've lost a reader, and I can't blame them! What's the  point in subscribing to a blog that never has new posts!!
I wish I had some super cool excuse like-- "Hey guys sorry I was climbing Mount Kilimanjaro and I didn't have internet soooooo yeah....my bad!"
Unfortunately, I don't have some awesome excuse like that. I'm sorry. Forgive me?

Stay tuned for frequent blog posts though!!! I'm going to be stuck in bed for 5 weeks soo expect lots of fun posts!

That's all for now folks! Keep reading!

-RRR

A Letter to My High School English Teacher

(Note: I apologize for any *bad* words or any other grievous errors in this post)

I found out today that my beloved English teacher, we shall call her Ms. S, was "let go" by one of my high schools (I went to 3). To say that I am upset about this turn of events is like saying BP spilled a "little" oil in the Gulf.
My two years (more like a year and a half) spent with Ms. S was one of the high points of my junior and senior year of high school; maybe that makes me a nerd, but it's the truth.

The first year (my junior year) at my new school, I was so nervous about failing and my performance anxiety was so bad, especially when it came to my academic performance, that I literally vomited . To this day I still can't eat bananas (Sorry TMI). Fun fact! Any who, I remember I always used to go after class and after school and constantly bombard Ms. S with the same questions over and over about the assignment she had given us; amazingly, she was patient with me and she took the time to make sure I understood everything and tried to reassure me.
You might think this is no big deal, but many a teacher before her had tried and failed to teach me while also actually being nice. Also take into consideration that my own mother once said that I could "drive Mother Teresa to drink." (She does have a point.)

The time she took to help me was worth it, at least to me. I never got anything less than an A on any of her writing assignments (or tests for that matter) and I did some of my best writing in her classes. I also read some of my new favorite books: Tess of the D'Ubervilles <3, Lord of the Flies (minus the whole Piggy dying thing) One Flew Over The Cuckoo's Nest, MacBeth, The Good Earth, etc.


(Oh and who could forget that *fabulous* movie adaptation of Beowulf we got to travel to KC to see in the theaters?)

I honestly think that one of the reasons she may have been let go is because, well, you know that teacher who is really good and ethical, the type of person whose moral compass always points true north and who believes that you "get" the grade you earn? The kind of teacher we need more (not less) of? Well, I think the reason Ms. S was fired was because sometimes the people in power at a school aren't always the people whose moral compasses point true north. (I should know...I graduated a semester early and I actually spent a year in therapy thanks to some rather unethical treatment by the school. Hopefully I'm not scarred for life...but that's a story for another day.) Or maybe they're just idiots. Sorry I know that's not very flowery or even very nice but let's be honest, sometimes, its the gosh darn truth! (Not that I'm bitter or anything!) 


But here's to you Ms. S! The best English teacher I've ever had! Maybe one day Hollywood will make an awesome movie about you featuring a young Katherine Hepburn (because she's classy and well-spoken)!

-RRR

Sunday Confessional Pt ?

G'day mates!
Another Sunday, another wasted weekend! And lucky for y'all, another confessional! And away we go!

#1: This is hard to admit but *gulp* but my cat Shnookums aka Choop has a drinking problem.
Unfortunately A.A. is not nearly as welcoming as they claim because when I brought him in they were less than friendly. Jerks.
But no seriously. Choop has kidney failure so he is constantly drinking water. He even has a drinking fountain that purifies the water!

#2: I'm struggling with Arabic this semester. I got an A+ last semester but I honestly think it was just because the teacher loved me. We didn't learn nearly enough and now I'm behind in this semester's class since they all had a different teacher. Ugh

#3: I most likely have Aspergers. I was diagnosed with a NVLD when I was a kid but now my doctor is thinking it's more likely that it's Aspergers which is weird because I totally understand figurative language..you should see me in my Hispanic Literature class!

#4: My dearly departed AWESOME dog KJ was a swimsuit model. Not really, but my sister took a photo of him on the beach near our house in Florida and his hair was all a-flowin' and I thought to myself "if dogs had a Sports Illustrated Swimsuit Edition, my dog would totally be on the cover" lol.

#5: I clearly have an unhealthy attachment to my pets lol.

But yep, that's all for now folks!

Keep Reading!
-RRR

A Clear Winner in Honey-Flavored Greek Yogurt!

Greek Gods' honey-flavored greek yogurt is delish but it has just a few hundred calories too many than I'm willing to spend on something that's sposed to be healthy; and greek yogurt is in fact healthier than its wimpy American counterpart: can you say protein (it's pronounced pro-teen)?!?! I've been trying to eat healithier lately and that's lead me on a quest to find a healthier, but still tasty, variety of honey-flavored Greek yogurt. I know there are tons of reviews out there reviewing other flavors of Greek yogurt, but there are none out there for honey (RACISTS, trust me I've actually checked. So I went to three different grocery stores, I kid you not, and picked up a slew of different brands of yogurt and the results were oh-so-conclusive; but alas, in order to find out who the Big Kahuna is, you'll have to read on!

#4: Oikos
(In VERY last place) Yuck. Just yuck. I am not exaggerating when I say I literally almost vomited when I ate this yogurt. If you've ever had the unfortunate experience of having the stomach flu, then you know what stomach acid tastes like. Well, if you were to mix some yogurt with that and put it in a yogurt container, seal it up, and send it off to the grocery store to be sold for a ridiculous amount of money, you would be the Oikos company, because that is clearly what they did. I did not taste any honey, or any yogurt for that matter, just a horrible very bad no good overpriced blob of stomach acid. Needless to say, I don't recommend this yogurt.

Tied for the #2 spot: Fage and Open Nature:
Fage is a favorite in the Greek yogurt world and I see why: they're product is so creamy it's almost custard-like! Plus it has really honey on the side! My one gripe is that the honey didn't seem to mix well, both physically and taste-wise, with the actual yogurt!
Open Nature is a fairly new brand but I think it's going to wind up with quite the following if for no other reason than their 6 oz container of organic honey-flavored Greek yogurt containing only 140 calories and 16 grams of PROTEIN! 16! That's more than some protein bars! Plus it tastes pretty darn good!

#1: Dannon Greek!
What a surprise huh? I highly highly recommend this yogurt! It is everything I want in my Greek yogurt-- low in calories, high in protein, creamy consistency, delicate honey flavor. It is mmm mmmmmmmm good! I mean day-um! I'm glad I bought 3 of these bad boys on a whim when I was at the grocery store because they are so going to be one of my new breakfast staples!
Also, if you're like me and trying to find a filling breakfast look no further...I have found a great combo: oatmeal with wheat germ, an orange (high in fiber and super high up on the satiety index) and a container of Dannon's Greek yogurt! Nom nom nom nom!

Your welcome lol!

Keep reading
-RRR

Monthly Goals!!!

Okey dokey so I'm going to be posting a bunch of posts after this one but I wanted to keep em all separate because that's how I roll ya know??
Any who, research shows that if you tell people what your goals are, you're more likely to follow through and accomplish those goals so what better way than to post em here?
My big goal for this month is something I need YOUR help for: I want to reach 500 page views this month!!! So tell your friends, lovers, neighbors, cats with opposable thumbs, and even that homeless guy down the street to head on over to my site! It'll be a grand ole time!!

Another thing I want to accomplish: I want to lose 7 pounds!

And that's all for now folks!

KEEP READING!!!