Wednesday, September 7, 2011

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 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 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 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  huge 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'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 readers(?)) 

Thanks for listening. Have a fantabulous day! 

-I Lava Juice =)

Thursday, August 4, 2011

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

Dear Readers,
    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, 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 (that I can’t touch). 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

Thanks for reading!! I hope you'll let me know what you truly think!! I appreciate all the feedback I can get!! Have a fabulous day!! 

<3 ILavaJuice/ Aurora

**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.

Wednesday, August 3, 2011

Thank You Followers and Commenters!

Dearest Loyal Followers and Commenters,
      Thank you so much for taking the time to read my posts and then to take it a step further by commenting on my posts. It really makes me feel special and like people really care about what I have to say (or...write I guess haha).

       Since most people don't check back on the comment page, I'm going to be starting a followers/frequent commenters page where I'll leave some personal love for people I feel truly deserve it. So check that out.

      For now, thank you to:
  1. KG (a loyal follower and commenter): I hope your mother makes a full and speedy recovery!! (What happened! Feel free to message me @)!!!
  2. Melissa (a loyal follower and commenter): thank you for your feedback on 20sb! And my sign off name comes from the fact that I was I was thinking I love me and then I got to thinking about how much I love all of those people who give me support...and I Lava Juice sounds like I Love You so it's a way of saying I love you to all of the people who give me support :)
  3. Irene Cortez (a loyal follower and commenter): my very first commenter and follower! Way to get the ball rolling!! 
  4. 20 Going on 80 (a loyal follower): thanks for following! I love your  name! That's how I feel!
  5. Little Missy Me (a loyal follower and commenter): it's great to find a fellow language lover! Are you a linguistics or literature major? I'm a Spanish Literature major myself!  
  6. Remy (a very loyal follower and commenter): I've been following you for ages, and still do on both this account and on my RRR ( account. 

Thank you all! And if I forgot anyone, well you just let me know!! Lots of love! Keep reading! Oh, and the contest is being extended to August 19th (b/c my cats' birthday x2 because they're awesomely cute twins!!!)) is on the 18th.

Shnookums (L)(aka Choop) and Sweetie (R) rocking the lion cut

Choop in the sun. You can tell he's a
"Smoke" Maine Coon 
Sweetie "helping" me study for my Bio exam

Ta ta for now dearies!
-I Lava Juice

P.S. What do you all want to be called because I feel like loyal commenters and followers is kinda blah! 

Sunday, July 31, 2011

Health Update

Dear Readers,
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 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. She told me dad how much sedation medication she gave me and my dad gave a low whistle and spoke 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).

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!!!

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

-I Lava Juice

Blog Changes

Dear Readers,
You'll (hopefully) notice some changes around the blog. I'm hoping it will make it easier to read; however, I may wind up switching it up again! Let me know what you think! All feedback is appreciated!!

-I Lava Juice

Monday, July 25, 2011


Song for this Post
Dear Reader(s),

I need people to read my blog, to leave me love, and to follow me. So in order to accomplish this, I've decided to create a contest. Here's how it works:

M(hehe):Your mission (Bond) should you choose to accept it (channeling Steve Irwin: despite the dangah) , is to bring as many active participants to my blog as possible from now until August 18th. The first time someone posts a comment, they should mention you as their referrer or you could tag me in your blog! The prize? Your favorite book  (to be determined) and a goodie bag filled with YOUR favorite goodies (based on info I get from you) as well as handmade jewelry and/or candles.

Is this absolutely shameless? Yes! Am I desperate? Pathetically so!

So let's get crack-a-lackin!

Thanks and have a fabulous day!

And remember,
A spoonful of sarcasm can make the ughness go down!

Sunday, July 24, 2011

Where Are My Manners? Allow Me to Introduce Myself

Dear Readers,
Where are my manners? My mother would be rolling in her grave...except she's alive sooo...not so much; but if she were!

My name is to remain unknown if you must call me something, you may call me, Aurora.
I like long walks on the beach and candlelit no but seriously:

I'm a college student double-majoring in Psychology and Spanish going into my junior year and I love it because I love to learn.
While I may rant on my family, they have been semi-supportive in recent years and I know they do love me. However, they all agree, I am the scapegoat.
I love to read everything I can, learn anything awesome (random facts, languages, history, biology, anatomy, etc), craft nifty things, bake yumminess I give my friends and finally  eat ice cream (when I'm able to eat lol)
Oh and did I mention my fantabulous cats? I saved the best for last!

About the blog:
I'll have contests and reader involvement!
So stay tuned!


Saying So Long Family and I CAN do It

Dear Readers, 
I'm not usually a complainer; I promise you that, but things are bad and my family is just making things worse and worse. When I turn to them for support they accuse me of doing it for attention, of being crazy, and to top it all of, they blamed my horrible ER experience last night on me
    I guess I should tell you what's going on: I'm having severe acid reflux; I can't even drink water and I haven't been able to eat for 3 days. I've lost 7 pounds. I have severe heart burn. I'm doing everything "right" and nothing helps. 
     When I spoke to my various family members the defense they used for it all being "attention-seeking behaivor" was me never having mentioned it before. Hmmm...I wonder why???I'm sure the astronauts saw  that one coming from space last week! I don't ever mention anything, any pain or physical issue unless it is absolutely intolerable; I deal with it because I know the reaction I'll get. Did I mention I come from a family of doctors? Seriously. 
    Stress makes things worse, no doubt about it which is why I've decided to go it alone. I'll have the GI guy (not GI Joe though that would be flippin' awesome!) call my dad and tell him the results. 
     I really wanted a normal relationship with my family for once in my 22 years. I tried so hard. But the fact that I spent the night in the ER alone said it all. 
    Whoever said when it rains it pours had it right (well...and wrong because obviously it drizzles a lot in Florida and Seattle). This whole situation makes me miss the man I was a caregiver for. He passed away in December and I miss him every day. He was my family, my adoptive dad, and everything I ever dreamed of in a family member: unconditionally loving and accepting , supportive; he assumed the best (not the worst), he always had time for me, and he emailed me every day even though our entire time together was spent with him dying of Lou Gehrig's disease. He believed in me more than I believed in myself and he brought me out of one of the darkest times of my life. He told me that I was everything he could ever want but never have in a daughter. =)
    So, I will feel better and I will graduate from college with honors and I will get into medical school despite my family's total belief that I will not. I will do it for myself and I will do it for my Adoptive Dad. I will do it for everyone who is in pain, who is suffering alone or is afraid. I will accomplish my goals and see my dreams realized. I will become the best doctor I can bee. i believe in me.
     And now to go down some tums, try to drink some water and study for class tomorrow in the bath tub! 
Viva la resistance! Lol

Sorry for the rant haha! I hope you stay tuned because I'm not usually falling apart at the seams! 

-Lalalalava Juice