We all sing with the same voice, and we live in harmony

This is what sick looks lik. This is what sick IS. I don't look it? You don't realize that my body is fighting itself. You don't realize that I'm allergic to four antibiotics,  an asthma medication that would make my life a lot easier, and a food allergy. You don't realize that I have an autoimmune disorder, a neurological disorder, rods in my back, an eating disorder, PTSD, anxiety, and a non verbal learning disorder. You don't realize that I have a balance disorder, that I have a crapload of medications surging though my body. I don't look it, but you know what? This is what disabled is. 

 You see people like me every day, everywhere. You see people with disabilities everywhere you turn. We are people, just like you, and we have feelings, too. I understand it can be awkward at times when you come across someone with disabilities, but never fear! I'm hear to help you out and avoid awkwardness. NOTE: These are tips from MY personal experience. Other people with disabilities may have different feelings and a different take on life.

1. Never, ever ask me "What happened?" or any variant there of. If you want to know more about my disabilities, there are better ways to phrase it. It's awkward for both of us when I explain it's lifelong, and it's chronic. Trust me, you're not going to get an epic skiing accident story.

Nothing like that, I promise. You may think it's making friendly conversation, but you're really not and just making everyone uncomfortable. Also, don't ask it while I'm clearly struggling to walk or with a door. I'm really not in any shape to answer you then, and you're more likely to get a slightly rude come back. It's rude to ask a stranger these type of question. Get to know me for me. And then ask your questions. I'm more than happy to talk about my disorders with you, as long as you are respectful.

2. For the love of peaches, NEVER ask me "can I ask you a personal question?" This is a good analogy:

It's never okay to ask a random woman if she's pregnant. Same way, it's never okay to ask me if I'm able to have sex, if people want to date 'someone like me', if my husband/spouse/siblings are also disabled. YOU DON'T KNOW ME. YOU JUST MET ME ON THE BUS. It is NOT the time or place to ask me a "personal question" because generally? They are rude and disrespectful, and I am a human being, just like you. You wouldn't ask someone without a obvious physical impairment these questions, so why the hell is it okay to ask me?

3. Don't give me your home remedies. Don't tell me such and such person.  Don't tell me how if I do x, y, z I'll do better.

Don't tell me if I do crossfit, if I go paleo, my health will get better. I've already given up gluten for health reasons. I don't need your 'quick fixes'. My doctors and I have gone through many of these things. It isn't helpful for you to throw this at me, despite your good intentions.

4. Oh my god, don't play the Jesus card. You will seriously incur my wrath if you do.

If you say or act like that, I will get angry and upset. I have prayed so many times. I've wept to God to heal me, and he hasn't, for whatever reason. God has a reason for leaving me disabled, and I've come to terms with it. Please don't tell me to just pray. Please don't tell me if I just trust God, he will heal me. He hasn't chosen to heal me, for whatever reason. I don't know what that reason is. I don't know why I was chosen for this path, and why I'm destined to live a life of physical pain. But you know what? It's just the way things are.

Now, I do sometimes want to have this reaction to people who are stupid about disabilities:

Really, I just wanted an excuse to use this picture

But you know what? We are people too. We are just like you. We laugh, we play, we cry, we sing. We weep, we rejoice, we bleed, we heal. We do things differently. But we all sing with the same voice, and we live in harmony.

you give and take away...

I haven't written in awhile, so midnight while watching Soul Eater is the perfectly logical choice, right? Of course. As I'm curled up here in bed, wishing my summer had taken an incredibly different term, the start of school just days away (f I can afford it, but that's another rant for another day), not knowing how my life is going to play out, it's sort of terrifying watching where my life is going.

On July 9, I had repeat back surgery, this time to do a partial hardware removal. Things were expected to be fairly uncomplicated. Two day hospital stay, sent home to recover, not a big deal, right? Well, I should have known better. My two day stay turned into a nine day stay, as I developed hospital-acquired pneumonia, diagnosed the night my fever hit 104.7 degrees (highest fever of my life, man). Nearly a month later, I still have a Foley in. Walking is incredibly difficult, as my high school knee injury decided to completely flare up and crap out, so I have a very attractive full leg brace. I knew at one point I may need a full leg brace, but it was a hard  pill to swallow alongside the back surgery.

The surgery also gave me wicked insomnia. I'm able to sleep, some nights, but not others. My primary (who is named Happy Thanksgiving... yeah... really...) prescribed Lunesta but my insurance is denying it and we're having to fight for it. Le sigh. Just like my Lyrica fight and that took a few weeks to get approved. It's hard, man, it's hard.

The simplest trips exhaust me, the most basic chores make me feel like death on a stick. I'm struggling with recovery, and it sucks! It's been a rough, rough road. I just don't know how I should feel about it, even. Should I feel relief that I'm recovering? Regret that things have turned out so poorly? Thankful that, for the most part, my doctors finally got their heads out of their asses are and trying to help me?

I find myself terribly angry at God. While at one point, my faith is keeping me going, another part is filled with rage and anger. Why did He let things turn out like this? Why can't He just freaking HEAL me already? He's God, right? Surely He can make me better and take away my pain. But at the same time, He's not. And I can't understand why. I can't understand what lessons He wants me to learn from this.

My life has become a whirlwind of appointments, and when it's not, doing some simple picking up and laying in bed playing Persona 4, Final Fantasy, or Zelda. Or watching Netflix. It sucks that this is what my life has turned into. It sucks that this is how I'm spending my summer. Not having fun outside, not having fun with my friends... but laying around in pain. I mean yes, good things are happening this summer, but at the same time, so much not good is happening. I'm watching my health fall to shambles, and not a single thing can be done.

I just wish there was an option to make it easier. I just wish there was an option to make this pain go away. I just wish there was an option to make things better.

Jesus loves me, loves me still, though I'm very weak and ill

I feel like my world has been shattered and turned upside down. I knew going into my appointment today that there was the chance I'd need another back surgery, but  now it's facing me dead on and I'm scared and I don't know what to do.

I went in for my two year followup today (two years is tomorrow. I graduate a year from that. Cool).

I looked super classy, man, super classy.

And... they don't know why I'm in so much pain. They don't know why the facet blocks failed, why physical therapy is failing, while I am just suffering at the moment. There is no answer. The doctor is considering removing some of my hardware, but it doesn't come risk-free. At the same time, leaving them in doesn't come risk-free. So do I put myself through another surgery? Or do I just live with the pain? Do I do a surgery that could cause possible future NF complications, or do I continue with the way things are, suffering?

The doctor can't give me clear-cut answers. There are no clear-cut answers. I have to make a decision, and live with the ramifications of it either way. I wish I did have a clear neon sign telling me which choice to make, but there aren't any of those. 

Because reason says I should have died three years ago

I am told that it is nothing short of a miracle I am alive, be it by the circumstances of life or be it by my own hand. I am told that many other people in my shoes would be homeless, would be drug addicts, would be drunkards. That I shouldn't be alive due to medicine mixups, ailments, and various things I have.

At the same time, I've been told that if I just had more faith I would be healed. If I just believed I could overcome, things would be better. The truth is, I've accepted things to be the way they are. It doesn't mean I don't channel my energy in recovery. What it does mean is like in the serenity prayer, I accept the things I cannot change and must have the courage to change the things I can.

Oh look, I can climb the twisty thing!

Just because I've accepted my disabilities, I feel, doesn't mean that I've let them pull me down. I've really beaten incredible odds. I've overcome so much. I still have much to overcome. I know that due to genetics my general health will continue to demolish itself. I know that if I try to push myself, believing if I just do a little better I can overcome, I will wind up making things a bazillion times worse. To focus on what I cannot do would be foolish. I can play on playgrounds, I can wade in the water. I can take walks. I can so much! Why pull myself down by  bashing myself?

I can play in the water!

I can't control what my father did in the past and I can't deny the impact it has with me today. I can control how I choose to act on the result. I can't control the fact that I'm disabled for likely life, but I can choose to accept it and make the best of my life, no matter how long or short it is. The important thing is that I keep on keeping on, and instead, continue to defy odds. Continue to shoot down the ones who say I can't make it. You know what? I may not make it in the traditional sense. But it doesn't mean I have to give up hope, that I have to quit at life. Instead, it fuels me to go forward, propels me to keep swimming (even though, well, I can't swim) and gives me a reason to survive.

And if you care to find me, look towards the western sky

As someone told me lately, everyone deserves a chance to fly

And if I'm flying solo, at least I'm flying free

To those who ground me take a message back from me!

Tell them how I'm defying gravity, I'm flying high, defying gravity...

Wicked - "Defying Gravity."

Nine months down

Medication and hydration! 

Nine months ago I have my back fused. It's kind of hard to believe it's only been nine months, and in other ways it feels like the time has flown by. Nine months ago I had rods put in my back. Nine months ago I had major issues with rehab and wound up in the ER.

It's been nine months, and how have things changed? Do I regret the surgery? Part of my recovery problems have been my fault. I still carry around a heavy backpack. I had a bed collapse on me because I was digging around under it. I sometimes forgot to call to schedule follow ups.

I guess I'm partially still bitter because of my NF1, I still have issues with my back - hairline fractures, scalloped vertebrae  and dural ectasia. I will never  have a full recovery from pain, and it's a hallowing thought.

But I don't regret the fusion. I'm taller now, and the pain is somewhat better, although there are still days where I'm curled up in my bed with a N64 controller and a cup of tea because anything else hurts too much. I totally rocked the hospital gown too, as evident in this gorgeous picture taken 5 days after surgery (and before a shower and real clothes, ick!)

I look like death on a stick.

I had my share of adventures in the hospital, such as the IV falling out and the weird feeling of a catheter. Learning how to walk again was difficult and painful, although I caught on quickly. It was awhile before I could use my crutches the way I was used to again, and I know had I not had limited mobility to begin with, walking again would have been a snap.

My scar is healing nicely, and so that's good. I have almost all my mobility back. I do sometimes (I'm hyperflexible) sit or lie in weird positions. My back is like "OH HAI ANGELIQUE YOU HAVE RODS IN ME REMEMBER LOL" and I'm like "oops" when I realize I can't always move exactly how I used to. Thankfully, bodies are adaptive and I just learn new ways to move around! It's still terrifying, though, because my surgery was so major and I still live in fear of the doctors discovering something that went wrong after surgery and having to go back in and fix something. I wonder if if all the pain I'm still in is normal. I wonder if my bones won't fuse properly. I wonder if the rest of my spine will shift (not unheard of with NF, but not common either) and I'll have to have more of my spine fused. And sometimes I still feel like just a scared child who wants someone to hold her and tell her that it'll be alright, which I don't think is a bad thing, per se, but at the time time it's heartbreaking because does anyone really know if it will be alright?

Perhaps it's hard because the recovery was brutal due to rehab messing things up and my NF. Perhaps it's difficult because I still live in pain due to both the NF and the fibromaliga. But is there a way things could have turned out different? Had I not had the surgery, my spine would have continued to curve and that would be, well, bad. I would have had to have more fused and quite frankly, that would suck. My scar is impressive enough as is. But yet, nine months out, I'm still living with pain and I'm still struggling. And I can't help but wonder - three months later, will it still be like this?

But at the same time, I find myself grateful that I've been given the chance to heal and the chance to move on with my life. I'm stronger than I was before surgery, both emotionally and physically. Even if my back doesn't fully heal properly it doesn't mean that the surgery was a failure, but rather that there's a different plan in store for me. The ride may be difficult and bumpy, but it doesn't mean that I'm not in it for the long haul. But no matter what, nine months with rods in my back have passed and I'm recovering, in some way, shape, or form.

Making Choices That Matter

Considering that I am running on two hours of sleep and keep shouting "WHAT!?" at my math homework (and it's not even due until Wednesday!) writing the blog entry about the big step I took today seemed like a good idea.

I've had a knee brace since my senior year of high school, so fall of 2005. I don't wear it nearly as often as I should because I'm horribly self conscious about it. Here's a picture of when I wore it in 2009:

It's rather obvious it's there. And even though I wore it under jeans, the bulge is obvious and yes, I got asked about it. I kept having to fix it after classes. Yes, awesome = sitting on a table in the math building fixing your knee brace as the other students are leaving. Yep. That's the awesome person you're talking to! ^_^

Thing is, it helps somewhat. And another thing is, I may need a new, more intrusive brace so I figure I might as well get re-used to the knee brace. It is hard, though.

I don't like drawing attention to myself. I sometimes feel that people see the crutches and not me, or that people see me as a cripple or a gimp (I hate those words T_T), and not a person. And I feel that adding a knee brace to that compounds it greatly. But it helps. My knee cracked far less today (my ankle made up for it) and the pain has lessened, although still intense.

I guess you're likely wondering what I have a knee brace to begin with. I played volleyball (I sucked. The one time I served the ball over the net the other team, who had played us before, was so shocked they didn't even move for the ball when it soared over the net. And I, being the ninth grade genius I was, didn't even realize it went over and I'd scored a point. Nevermind the insane cheering from our team.. I just thought they took pity on me and gave me another shot!) my ninth and tenth grade years. In ninth grade, I did a dive for the ball during a practice. Only upon my knee impacting the ground did I realize a critical detail: I'd forgotten to pull up my knee pads after the last bathroom break. Oops. Better yet, I played the rest of that season and the entire next season, plus two seasons of cheerleading on that knee. Even better I didn't see the doctor for it until my senior year. Not really my finest moment when I told him when I'd injured it. Ahem.

Nice Doctor Dude sent me to Other Doctor Guy as he was a sports medicine guy, fresh out of his fellowship (mmm, fresh blood! Seriously, I love doctors fresh out of their fellowships. They're on the up and up, and don't yet have the callous, cynical attitude some of the older doctors get. And plus, it's fun to be a medical mystery with them and baffle their young brains.). Ahem. I became a frequent customer between ODG and the clinic, because, well, to put it nicely, I'm a klutz. He wanted to get me a bubble suit and put me in a white, padded room (when I left in 2008 he told he to keep him updated on stuff. I forgot to. How weird would it be, almost 4 years later, to write him one?) and whatnot. I still remember the time when I was on underarm crutches, hyperextended in front of the clinic doors, and completely wiped out. Doctors, nurses, and patients: *panic panic panic* ODG; "Oh, it's only Angelique. Somehow I figured it would be you." GEE THANKS ODG.

Now that was a tangent if I ever saw one! Ahem. I was dx'ed with Patellofemoral pain syndrome . See how it says "malalignment of kneecap"? Means my kneecap snaps in and out of socket. And it hurts like hell. There's not a lot that can be done for my case, as the doctor's aren't big on doing surgery but they may look at it in the future if this keeps up. In fact, when I saw a doctor for a surgical consult in 2009, that's how I wound up finding out I needed back surgery because they realized "Oh hey, chica hasn't had back xrays in awhile. OH SNAP HER BACK LOOKS BAD THIS ISN'T GOOD." Yeah, that's pretty normal in my life.

I always hated the brace because it's big and clunky. And it's not fun to wear.. But I sucked it up and ponied up and wore it, like a big girl. I should do this about more things that are good for me. :)

Meet the Blogger

I suppose now would be a good time to write out some more info about me.

I go by the nickname Nora, but my legal name is Angelique. I live in Minnesota, but I was born and raised in Ohio. I'm 24 years old and a junior in college double majoring in psychology and ministry, with a minor in communications.

All that to say, my life is pretty busy during the school year. I'm doing some work with the TV studio this year which will be interesting, because most of my training and knowledge lies in radio. I ran my own radio show, The Coast to Toast show, at my previous college. I really enjoyed it, but had to give it up because of health issues. I miss radio like mad, though. I am, however, truck trained and certified with CTV North Suburbs (community access TV in St Paul) but most of what I know is with graphics and sound. I want to learn more about video type work because I am a dismal artist and so I would love for video to become my art form.

I love to sing. I'm a 2nd soprano/1st alto swing, depending on the piece. I'm not doing choir this semester because my life is crazy with school and doctor's appointments. I suffer from a genetic disorder known as NF1 (click the NF1 tag below to read more about it), along with a myriad of other issues. I had major back surgery this summer, and I'm still recovering from it. They say full recovery will take a year if no issues arise.

Musicals are awesome. I love RENT, Hairspray, Annie... if I were to list them all you'd be here way too long *laugh*. Movies are fun, too. I love those 80s movies and early 90s flicks that are so bad they're good. I love watching movies, and falling for the characters... that escape into another realm. I also love to read. I'm currently reading the Chronicles of Narnia for the first time ever, and it's pretty incredible. My favourite is The Giver, with a close second to Tuck Everlasting. I love the Harry Potter series, as well as A Series of Unfortunate Events (I really wish the movie had been better, though for the latter).

I love anime. Love love love. My all time favourite is Fruits Basket. I'm currently working my way through Fullmetal Alchemist, Full Metal Panic, and Ouron High School Host Club. Yes, all at the same time. After this, Negima, Fullmetal Alchemist: Brotherhood, and Full Metal Panic: The Second Raid are on my list. My favourite off air TV shows include Scrubs, Newsradio, Fraiser, WKRP in Cincinnati, Three's Company, and Family Ties. For current shows, it's mainly How I Met Your Mother and The Big Bang Theory. I love video games. I rock the N64 and hope to acquire a Nintendo DS and a Playstation 2. I'm an RPG fan girl, but I also love beating the crap out of things.

My favourite colour is orange. I also love yellow. Colours are important. Song lyrics sum up my life. I quote them, use them as Tweets (what a weird word), use them in Facebook status, etc.

At one point, I would have said my faith is my life. Now, I'm at a point where I'm recreating my beliefs. I believe there is a God, but I am not sure what He is. I believe there is a greater force out there driving us, but I'm not sure how it lives in our lives. I don't know what I am. I'm not agnostic, I'm not an atheist. I hesitate to use the label "Christain" because it holds such a strong many people.

I'll close my about me with a few song lyrics, as they say what I cannot. I told you I like song lyrics!

It just takes some time, little girl
You're in the middle of the ride
everything, everything will be just fine
everything, everything will be alright, alright (Jimmy Eat World - The Middle)

"Sometimes I hear my voice and it's be here...
silent all these years." (Tori Amos - Silent All These Years)

Things will get better, this I promise you
you won't feel this way forever
Things will get better, this I promise you (and I know)
Loneliness won't last forever (Spoken - Promise)

There's only us, there's only this
Forget regret, or life is yours to miss
No other road, no other way
No day but today (Various parts of RENT by Jonathon Larson)

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

-c1987 by Emily Perl Kingsley

Now, I'm not a parent of a child with a disability. I am a child with a disability. I will never walk without pain. I will never walk without a limp that is now corrected with crutches. I will never live a day in my life without pain. It's not the life I saw for myself as a child.

As a child, I dreamed BIG, as all little girls do. I wanted to grow up to be a tractor driving librarian (shut up! it wold be AWESOME! I'd drive a tractor to bring library books to kids stuck on farms!). I'd chase my dreams overseas. I'd sing and laugh and I would have a wonderful life. I had my health problems as a child, but no one knew they'd grow into what they are now. No one knew what I'd be facing now.

But yet, at the same time it offers things that I wouldn't have otherwise. It offers chances I wouldn't have otherwise. If I didn't have these disabilities, I don't think I'd live life the way I do. I know my outlook wouldn't be the same.

There may be nights, like tonight, where I succumb to tears, hot, bitter tears rolling down my cheeks as I lean against the shower. As the grief of losing so much - parents, health, friendships, lives... hits me full force. As I shake and weep, tremble and cry. Alone - with no one to hold me as I cry and no one to tell me it will be okay. I have my breakdowns too.

And I can't say that everything will be okay. I can't say that I wish I was in Italy instead of Holland some days. I can't say that my heart, my spirit, my very flesh doesn't ache, because that would be a lie. But yet... Holland is where I am. And it's where I'm meant to be, for reasons I will never understand or I'm not even sure I want to understand.

And so, I live with what I'm dealt, grateful for it in some strange way.

All About NF

I was born broken. My left lung collapsed. From early on, I had a long, rough road ahead of me medically speaking. The amino said I was fine. Everything pointed to me being fine - but people were mistaken. I was not the healthy, vibrant baby that my parents were expecting. If only the collapsed lung was the only problem...

When I was three years old, I was diagnosed with neurofibromatosis type 1. NF1 occurs in one in every 3000 births. I currently have no visible tumors, but have lische nodules, or benign tumors, that are visible in both of my eyes. I have several cafe au lait marks, which is one of the trademark signs of NF1 (in fact, I don't believe there is another disorder that these marks occur in). I have armpit freckling, a larger-than-usual head, and bone deformities. I have learning disabilities (namely dysgraphia and an in-process DX of one in math).

NF is kind of my overarching disability. All my others stream out from having NF. I see a specialist for it, and I'm at high risk of getting cancer or tumors some day. My back surgery is so important because due to the NF1, I have dural ectasia and vertebral scalloping in addition to the regular curve.

NF affects my heart, it affects my learning, it affects everything about me. My NF is the reason that I am the way I am now. There is currently no cure, but there is work being done to find one to help children. I, with a moderate case, am one of the lucky ones, believe it or not. My case is progressive, and will continue to take over my life.

May is NF awareness month. To keep up to date on progress on this crippling disorder, become a fan of the Children's Tumor Foundation which will give you all the info you need.

May we one day find a cure.

May we one day find an answer.

May we one day heal this disease that causes me to live in pain every day, bounce from doctor to doctor, and suffer silently.

May we one day be able to say, NF is an extinct disorder.

And until that day, may we find a way to live in peace.