Bye Bye Appendix!

So I figured I'd write about having my appendix out.

I had a general malese feeling all last week. I was generally weak and tired, but not too bad from Sunday on. Low grade fever, chills, just had what I figured was a general run-on-the-mill infection. By Wednesday I felt fairly crappy, and didn't even fold most of my laundry by the time I did and just chucked it in the laundry basket. I muddled through thanksgiving and felt worse and worse as the day went on. I woke up on Friday feeling terrible. I spent most of Friday arguing with my friend about if I should call the doctor or not, and she finally convinced me to at least email the nurse advice line. I emailed, and they told me to call. I called, and they told me to go to urgent care. We couldn't go straight to UC as we still had to finish up some things in Hastings, so we did what we needed to do, then headed to the Highland Park clinic.

The clinic sent me straight to the ER, telling me not to eat or drink anything, that it was likely my appendix. I didn't believe them as I'd been told this before and figured it has to be kidney stones or the flu or something. It couldn't REALLY be my appendix this time, could it? I wasn't running a high fever or anything, but after I got triaged and into a room at St Joseph, they ran a CT scan.

Not long after, Anna and I hear the words "something something really appendix." We don't know if they are saying it's really my appendix, or if it's not really my appendix. I've been seen in hospitals before with suspected appendix issues, but clearly it's never been. Welp, this time it was. And that's when the downward spiral started. Pain meds, antibiotics  I quickly got sicker as the night went on because I got my diagnosis as 1:30 am, into a room a 2:30, and surgery was at 6 am. However, appendicitis is very fast acting so I was a sick young lady by the time the surgeon saw me (who commented on how sick I looked). I remember being strapped down on the OR and being given an oxygen mask, but not much after that! The next thing I remember is absolutely flipping out in recovery because I didn't have any friends there (Anna had gone home to sleep until after my surgery) and they hadn't allowed me to bring my bear or blanket with me. I had no comfort objects in my general vicinity  They did give me some pain meds, and I calmed down I guess. I was completely maxed out on pain meds (I remember being told I'd stop breathing if they gave me more, and I was really suffering post op!). and eventually, I'd stabilized to the point where I was returned to my room. When I of course got on my smartphone and made pain and drug induced smart-phone posts all oer the internet. I even emailed professors, concerned about making up course work. Ever the good student, I am.

My friend Susan contacted the church pastor, and he and my roommate actually arrived at the same time. We talked for awhile, and then he left and Anna and I just hung out for awhile. After Anna left, CJ came for a bit. We'e made up as friends and that is a good thing I think. :) We played Pokemon and talked and stuff. I didn't sleep much because I was up all night in a combo of in pain and coughing. It sucked. Steph kept me company when I was up in the middle of the night coughing my lungs out and watching Inuyasha, even though I was a crabby Pikachu. She is a good, good friend.

Sunday was similar with visitors (Susan and Aaron, Anna and her Mom, then later just Anna), doctors, smartphone posts, and watching anime on my laptop. And me freaking out to my professors about ALL THE WORK I HAVE TO DO, and them trying to tell me to just worry about recovering and once I'm healthy we will cross those bridges. Spent a lot of time talking to friends (Steph!) on Messenger too to keep me company. :)

Anna and her parents rearranged the room. Set up Anna's old bed for me. YAY! My stuff got rearranged so I'm in the process of trying to find all my stuff... that's kind of interesting... I'm still running fevers and I'm dizzy.

I did learn a valuable lesson. I'm lucky I was in the ER/hospital as I quickly got sicker. I know that appendix issues can be stress induced and I know I have been stressed lately. I know it's also not very smart to put off going to the doctor when you are sick and I saw how quickly after I got diagnosed the downward spiral happened - even the surgeon commented on how sick I looked. I still don't look all that great. I can't keep putting off going to the doctor because while things worked out this time... I could have wound up with a ruptured appendix and gotten very very sick. I'm still sick (feverish - but it's only 100.8 and the call the doctor point is 101) and dizzy, but this time if it doesn't go away, I will call the doctor even if they think I'm being weird and paranoid for bugging them.

My health is a far too valuable thing to lose. I need to keep myself healthy. I'm horrible stubborn and wanted to do my homework while in the hospital - neither Anna or Steph will let me (nor will they let me do it while recovering at home, how rude!). Perhaps getting so sick is my body's way of telling me that sometimes, it's okay to cut myself some slack and I don't need to set such impossibly high standards for myself. That it's okay to LET myself be sick. I mean, who emails disability services and their professors mere hours before their surgery to arrange make up work? And then follows up just a few hours after, freaking out about how they are going to do everything? Disability services kind of ripped my head off and told me that getting my appendix out was a perfectly acceptable reason to take a break and I really need to take care of myself before I worry about all this. :)

I think I've learned a lot from getting one small body part taken out.

As my memories rests, but never forgets what I lost

Like my father's come to pass, seven years has gone so fast
Wake me up when September ends
Here comes the rain again, falling from the stars
Drenched in my pain again, becoming who we all

September marks seven years since everything flipped upside down, since everything turned topsy-turvy, since my life went totally off-kilter. It's kind of funny because even though my father isn't actually dead as in he kicked the bucket, emotionally he's dead to me as I don't speak to him, haven't seen him in seven years.

Funnily enough, this time seven years ago this song was all over the radio. I heard it on the bus going to school every single morning (along with the DHT cover of "Listen To Your Heart"). Kind of funny that seven years later, it sums up my feelings about the month of September.

September isn't as loaded as October 31st is for me, but September is still a month of loss, a time of grief. September 2005 is when my health started spiraling out of control. September 2005 was when I started to realize who my true friends were. So much happened seven years ago. So much happened.

As my memory rests, but never forgets what I lost
Wake me up when September ends

I fully believe that one day my memory will be at ease, but I don't know when that day will be. I believe there will be one day that's not taunted by flashbacks and nightmares and painful memories. I fully believe that will be a day where it will all just be another faded scar, another jaded memory. Kind of like the lyrics from the opening theme of my favourite anime (taken from the Japanese translation to English and not the English version): "Even when yesterday's wounds remain, take yesterday's tears and turn them into tomorrow's strength."

I don't have to let the past control me. I don't have to let myself be consumed by the memories. But just because I finally process the pain after all these years, just because I finally come to terms with the past, doesn't mean that I forget it. It doesn't mean that I have to forget it at all, but it also doesn't have to be at the forefront of my memory.

A lot has changed in seven years. I've gone from an 18 year old high school senior to a 25 year old college student. I never dreamed on my first day of high school that these seven years would turn out the way that they did: The whole ordeal with my father, losing my health, losing some of my mobility, moving to Minnesota, taking time of school, still being in College, this, that, and the other. It's kind of baffling, really, what all has happened over the course of seven years. And how in some ways I'm so different, but in some ways some things never change.

All this doesn't mean that sometimes I just want to skip the month of September, and October as well for good measure. Maybe one September, I won't just want it to end before it begins .Maybe one September, I won't want it to just go away.

will i lose my dignity? will someone care?
will i wake tomorrow from this nightmare?
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.

It's not September yet. It will be in just over an hour. It may be a difficult time - but maybe this year at long last, I can start healing and fully living it the now, instead of being trapped in the past.

Chronic Pain Chronicles

Rate your pain on a scale of 1-10 with these really cheesy, not very helpful faces.

 For as long as I can remember, I've lived with chronic pain. I don't know what it's like to live a day without pain. It's so far out of my grasp that I cannot even envision it, I don't remotely know what it would look like. I was officially diagnosed with fibromyalgia last fall, but I've had the signs pointing to it for years. Interestingly enough, emotional trauma can cause fibro and I can't help but wonder if my childhood played a role in my development of the disorder.

It's hard. Some days, just a simple chore like doing the dishes takes everything out of me, and then the trash still leans against the door to be taken out, the clutter spreads over the floor, and I flop in bed with a n64 controller or a TV remote. It's hard. Some days just crawling out of bed to do a chore as simple as get a glass of water takes every ounce of effort I have.

It gets downright soul-crushing at times to know that all your friends are out having fun and living their lives, yet you are curled up in pain. Your life is on your computer, because being in the real world and interacting with people is far too painful. You ache and you hurt and it's to the point where you just plead with the doctors for a relief from the pain.

What sucks? The relief for my pain is out there. But my insurance refuses to cover it. Living in pain and knowing there are drugs out there to help but you cannot afford them is a real kick in the spirit. I try to keep upbeat and positive about the struggle, hoping maybe this treatment will help, maybe this drug will help. But I'm not Molly Clock from Scrubs, I can't keep rolling with the punches and keep upbeat and happy. 

It takes such a toll on my spirit. And it makes me hurt inside as well as out. I am sick and tired of being 24, and living in chronic pain. I'm sick of it. And I just want relief from it. I don't care if it's a drug, a treatment, a surgery. I don't care what it is anymore - I just want to live pain free for once. Some days I think just one, just one pain free day, completely pain free, would be enough. Just so I know what it's like. Just so I get a taste of what it could possibly feel like to not live like this.

I'd be happy to get the pain down to a tolerable level. I even told my doctor I've given up hope of ever being completely pain free.

But oh, how I wish it were possible. 

"I cannot find my voice."

I have this habit of locking down inside myself. Oh, there is so much happening. Images dancing in my head, sights, smells, sounds, twisting together, tangling, intertwined. It's safer to stay silent. It's safer not to speak. I'm afraid to speak out. Speaking out senior year and being shushed solidified that fear. I was only eighteen. I was a senior in high school. And I was heartbroken. I wouldn't wish the choices I made that cold October morning to my worst enemy. But yet, the choices let me to where I am today.


I've grown so much since my senior year. I should hope so, considering I'll have graduated six years ago come June. Six years is a long time, and even as I got my diploma that warm June evening, I had no idea the changes that would come over the next few years. I had no idea I would legally be declared disabled before 21. I had no idea I would sever ties with my mother as well. I had no idea that I would be called into the ministry. I had no idea I wouldn't finish college in Canada and that in 2012 I'd still be working on my undergraduate degree. I had no idea I'd live in frick-fracking MINNESOTA where it's frick-fracking cold. I had no idea I'd still be battling PTSD, cutting, eating disorder... I suppose I thought it'd magically stop, but NEWSFLASH: IT WON'T.

I had no idea that both my grandparents would die before I completed my undergraduate degree. I had no idea that I would make beautiful friendships, meet my future best friends, and go through heart-wrenching grief. I had no idea of any of that.

I had no idea at age 24 people would STILL think I'm 14. Heh. Funnily enough, side story. I was on my way to a doctor's appointment and I mentioned how I still had a specialist at the Children's Hospital. "Oh, you could easily pass for 14." Me: "Mmhmm." "You'll like  more as you get closer to your 30's!" *silence* "I'm 24." "WHAT?!" "Yeah, I'll be 25 in June." "...." "You're not 18?" 18 is the oldest I've been mistaken for in awhile, so I suppose that should make my happy. Anyway. Done with the side story.

Tori Amos said in her song "sometimes I hear my voice and it's been here, silent all these years." Problem is, I don't hear my voice. Sure, I blog and I write and I talk. But I bottle so much up. I keep so much inside me. And I don't know how to pull it out. There are things about my past that repulse me, that I haven't told anyone. And it scares me that it's there. And I don't want to talk about it because I'm afraid people, even those who want to help me so badly, won't like me anymore. Will think horrible things. Won't understand. And so, I carry the burden.

When will I realize how stupid that is?
When will I realize how dumb that is?
When will I find the way to pull out my voice and be strong?

And she fools all of her friends into thinking she's so strong but she still sleeps with the light on

My bed is soaked with sadness
My sadness has no end has no end
A downward of  spiral of dispair
That I keep falling in 
I need you how, how I need you 
(...)
Your silence is like death to me,
so won't you hear my desperate plea?
-I Need You, The Swift

It's hard some days to get myself out of bed. My alarm goes off, a few swear words slip past my lips, a stuffed animal may fly across the room. I'm not a morning person by nature, never have been. But when you're trapped in depression, when your greatest enemy is that reflection in the mirror, sometimes hauling yourself out of bed is one of the most difficult things of the day.

I suppose I make it sound like I'm drowning in depression. Some days I am. Some days I wonder why I get out of bed when I've barely slept the night before and daytime is the only time I'm able to actually sleep. When I'm running on two to three hours a sleep a night, and a couple hour nap during the day. Why I bother even trying to hope, trying to dream, when it seems like my hopes and dreams and wishes will just be crushed. It's hard.

Living with depression is like fighting a monster every morning. My days and nights are reversed. I just want solace - just some relief from all the pain I'm trapped in. It feels like just doing simple things - hanging out with friends, eating, hauling my butt out of bed, doing the laundry, drain all the effort and energy out of me and I'm left alone with my thoughts.

All I want to do is be free from this demon I battle. I want to be truly happy again, and not a person that I want to hide from. But I don't know how. I don't know how to open up about the past and allow people - friends, therapists, pastors, et al, help me. I don't know how to let people understand and even begin to give me a chance to have hope again.

For as much as I want to hope, dream, laugh, love, and carry on with my life, it scares the everliving shit out of me. All I've known for over a decade is depression. All I've known is bleakness. All I've known is living in fear and terror. And as exhilarating and thrilling the other side might be - it's completely unknown. It's something I've never felt before. What if it's too much? What if I don't like it? What if I taste the other side, and I don't like it at all? What if it hurts? What if I get a sampling of it, and I wind up falling back into depression? Would the relapse be that much worse because I've tasted the other side? Or would it be better once I pull out of the funk again, because I know what the other side is like? 

I get sick of trying various antidepressants. I get sick of feeling like this - I don't WANT to be like this! But how do I attempt something I've never tried, how do I try something I just don't know? How do I even attempt to spread my wings and fly, when every time I've tried to fly I've fallen?

Depression sucks. I'll leave you with Adventures in Depression because that sums it up better than I ever could.

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.

I'm walking impaired

Being disabled is really such a strange thing. This is a horribly bad picture of me, but you get the gist:

I feel that when people see the crutches, they cast a judgement. They they think I'm weak, that I'm not smart, that I'm deaf, that I'm dumb, that I'm mute (HA! I bet my friend wish at times), that something isn't right with me. I feel because I have a bad back, off-kilter balance, weak knee, and more that I'm somehow incomplete. That something isn't right with me.

And it's a horrible, horrible feeling. I wonder if I'm broken. I wonder if I can be fixed. I wonder what people think when they see me. And I wonder if I will ever live a day without pain. There is literally nothing they can do for my knee at this point in time. My back has been fused.My balance disorder has an unknown origin. As I get older, my NF will continue to progress and I will become more and more disabled. I may be able to achieve my two dreams: get a license and go overseas, but that will take more time and energy and effort than most people.

It's a hallowing feeling, knowing that I'm only 24, yet already destined to live a life of pain. I will likely never know what it's  like to be fully pain free, only how to better manage and control the pain. I will never know what it's like to do so many things that so many people take for granted. I don't know what it's like to not have a laundry list of disorders, or to make sure every place I go is somehow handicap accessible. I will likely never know what it's like to have a child, as the disorder would not only harm me, it would harm the baby. I get so angry. I get so frustrated. And I wonder why God chose me to walk this path. I get frustrated that over the course of a year I see more doctors and specialists than most people see in their entire lives.

I'm told that God must have a special plan for me, that He must know something. Perhaps he does. But it doesn't change how angry I am that I was made this way. That my life is consumed with appointments to just try and give me a normal life, something others take for granted. That in addition to the physical ailments, I was cursed with PTSD and ED-NOS (coming soon in a blog entry near you about those).

I wonder if it would be easier if I had a family support structure, that when I'm up in pain at 5:30 in the morning, crying because I can't sleep because my back kills and I can't move my leg, if that would make it better. Or if it's better that I often suffer silently, so that others don't know, don't worry, don't have the chance to care.

It's funny the thoughts that run through my head - even though I know most of them are purely irrational. I wonder how much the pain fogs them.

And now, a rant from your resident Nora

I've been told before that I'm lucky to be on Medicaid. While I don't deny that it has it's benefits, do any of the people having any idea of the hell I face?

In order not to have chronic nausea, I require a medication that costs over 2 grand a month. I don't get it.
In order to not have chronic pain, that would run nearly 200 a month. Instead of paying for that, they pay for trigger point injections, acupuncture, physical therapy, and more. When if they just paid for the damn medication, it would be cheaper.
They denied my spacer for my asthma inhalers. 30 bucks. Complete with rude pharmacy tech who got snippy with me when I told her I couldn't pay today.

I'm filing an appeal for my CT scan. If it's denied, it's over $1,000. Why did I have it? To make sure that the rods from the back surgery that we had to FIGHT to get covered, hadn't shifted. Yet, oh no, it's not "medically necessary."

I can't get the cough medicine I need to sleep some nights. It's only $35.

I don't have the money laying around to cover these meds. I go without medical treatment that I need, just like everyone else does. Just like the people who have "good" insurance, I go without.

Just because I'm on welfare doesn't mean that I get everything handed to me on a silver platter, which many seem to think. I still fight for my medical needs, and yes, I go without.

Don't just judge me because I'm on welfare. I don't have it easy, either.

Every lament is a love song

My dad's dad died in 1975.
My Grandma Dixie (dad's mom) died when I was eight.
My Pawpaw (Mom's dad) died when I was nineteen.
My Mawmaw (Mom's mom) died when I was twenty-three.
There was my great uncle, my great aunt, etc, etc, you get the picture. I've been to more funerals than weddings in my lifetime.

I've had various friends die over the years. Most were ones I used to be close to but then fell out of touch with. One I used to be close to, then we had a fight and never made up. Others, I just got busy and selfish with life and we just didn't talk anymore. And it sucks. I have various memorials set up in my room to various people: a stuffed pee cup for Nick (LONG STORY), the teddy bears Rachel sent me long ago, my grandpa's beanie baby lady bug, the list goes on.

Hell, I just don't grieve well, I don't think. I stuff and I stuff and I stuff and I stuff. My puppy (Pirate wasn't even a year old when he died) died 10 years ago and I still haven't fully processed it.) But my biggest fear is that I am going to die young. I'm plagued by health problems. What if I die young? What if I leave friends behind asking the same questions I am asking now? What if it isn't my health that takes me, but a car accident? Something else? Will I leave behind a legacy?

I just can't help but wonder these things. I'm terrified of dying.

Mrs. Tanner: Sweetie, I'm seventy-four years old, I'm ready to go.
J.D.: Yeah, but with dialysis, you could live another...eighty or ninety years.
Mrs. Tanner: I think you're being a little irrational.
J.D.: No I'm not.
Mrs. Tanner: Everybody dies sometime.
J.D.: No they don't.


***

Dr. Cox: (In mock crying voice) But what about our duty as doctors? (Back to normal voice) Look. This is not about Mrs. Tanner's dialysis, this is about you. You're scared of death, and you can't be; you're in medicine for chrissakes. Sooner or later, you're going to realize that everything we do around here, everything is a stall. We're just trying to keep the game going, that's all. But, ultimately, it always ends up the same way.


***

I'm terrified of death, which is odd considering I was hospitalized in 2006 due to being suicidal and in a crisis home for the same reason in 2009. But I'm terrified of death. It scares me senseless. and that's just... I don't even know. I'm out of words to describe how it makes me feel. But I know that my health is falling apart. I know I'm not a healthy 24 year old.

And it breaks my heart that one day, likely while I'm still young, my friends will be wrestling with the same gut-wrenching questions that I wrestle with.

Every lament is a love song,
yesterday, yesterday,
I still can't believe you're gone...

ready to smile, and love life

Here she stands today, in her brilliant shining way
Stronger than her pain, in her brilliant shining way

><> ><> <>< ><>

I know what it's like to have crippling depression.
I know what it's like to be consumed with hopeless.
I know what it's like to be drenched in pain, both physical and emotional.
And for the first time, I'm starting to see the other side.
I'm starting to reach out of the abyss.
I'm starting to spread my wings and leap -
leap into hope, leap into the future,
leap into a new life.
I'm a dreamer, a starry-eyed girl, passionate
I love and I live and I laugh and I learn
And I'm more than my disabilites.
I'm more than a list of medications,
a ball of symtoms,
and rattled off disorders.

I am more than an abused child,
rather, I am survivor.
I am more than a victim,
I am an overcomer.
I am more than a child with questions -
Questions about faith and life and love
and God and Jesus and the Holy Spirit
and creation and forgiveness and
sin and the past and the present and
the future
but rather, I am a seeker
Trying to place the pieces of the puzzle together,
trying to finish the row of Tetris.

I am learning to live...
and it's a beautiful ride.

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.

Six Week Surgery Update

So I decided to hell with it, and made my blog public again. I like having a public blog, and I figure there's a report button for a reason, right?

This marks six weeks post op. I look like this these days, as you can see up there. Well, I usually don't have a random 3 year old with me, but she's there sometimes. And I chose this picture because you can tell I'm sitting straighter. I did have to get new crutches, because the old ones were way too heavy after surgery and I could barely walk with them.

My insurance still has me listed as a patient at the rehab place, when clearly I'm not, so I'm starting to raise hell. I still live in horrible back pain, and I think my scar might be slightly inflamed but I can't tell. I find out at my post op on Thursday. And will hopefully find out who whoever medicated me and landed me in the ER on oxygen.

I'm doing two summer classes. I'm finally learning algebra. I'm a little behind, but I took today off because I needed a day off. I'm also doing health, which is proving to be interesting. My life is currently juggling health and school and therapy, which is exciting.

My next update will be a real update for the real purpose of this blog - exploring my faith during a broken time. But I thought a six week post op update would be a good thing so there we have it.

she wishes God would give her some answers and make her feel beautiful

I had back surgery on May 9, 2011. This is what my back looked like before I went into surgery. It was bad. I believe the curve was between 38-40 degrees. The black spot is called a dural ectasia and only occurs in EDS, NF1, and Marfan Syndrome (along with a coupe other rare disorders). There are small fractures in the bones, but you really can'tsee them. what you also cannot see is the way my vertebrae are deterrating. They were also scalloping, which no, does not mean there were fish in my back. My back was in really, really bad shape. The surgery was scheduled for May 9, 2011. Getting everything set up was a nightmare. One professor didn't want to move the final, but she did and I got a B. I got a C+ in another class. I don't know about the third yet. Anywa,y yeah, that' my back before. Before going under was terrifying. They let Rollie,a church pastor come back, along with Susan and Adelaide (who happens to be my favorite three year old girl ever). They talked to me and calmed me down, and I was in good spirits. The hospital also gave me a sweet gown that allowed me to control the tempeature of the gown. Sweet. A heated gown.

Not long after talking to them, th

ey put IDs on Norabear and Zoephent back to the OR with me. They gave me Versed and the last thing I remember is hearing Adelaide giggle. I woke up after the producure with something draining shit from my back, and a cath draining my bladder (

when they took that out a few days later, best feeling ever!). They had my warm, fuzzy blanked that my friend Kim and her daughter Naomi made for me over me, and had nestled Norabear (which kim's daughter Dolly and Millie made) in my arms. My first words were "Where's Susan?"

Now, I bet you're wondering what my back looks like.

It looks like this. There are no screws or hooks in the middle because the vertebre were too thin. I was on high pain meds for a few days, and I'm still on a good dose of them. This is the scar. I'm linking to it because some of you may not want to see it.

http://img.photobucket.com/albums/v16/summerskyz/9bb23e6e.jpg

I still can't do many things, like I can't do my own hair, and I sometimes have torublewith my t-shirts. Walking is uardl but a special friend ordered me a new pair of light weight crutches that I get on Monday.

Six days post op, they took the dressing off, gave me a shower, and allowed me to wear real clothes. I'm told I look pretty good for six days post op:

One of the nurses helped me get dressed, and did my hair for me. And let me tell you, it felt GERAT to be dressed in semi-normal clothes. Friends visited, and they were way too kind to me.

I was released to a nursing home/rehab center on Tuesday. I'm the youngest here by like five decades. They do lots of therapy here to get me back to normal. I'll need a PCA and likely a home health nurse. I'll have friends helping me cook and I'll be in a studio, so if anyone needs to they can stay the night.

For the first time since surgery, I wore jeans today. Since I got taller from surgery.I am no longer tripping over them . Susan helped with my hair and for about 12 days post op I look pretty kick ass:

So that's it. I move to Concordia on Monday, with the help of some friends. I'll get all settled into my apartment, and life will be groovy. Really can't wait to be in my own place! I do need to get a TV off Craigslist or Freecycle so I can hook up my N64 and get a cheap DVD player so if anyone in the area can keep their eyes open on Freecycle and Craigslist that would be great and i'll happily reimburse you.

All that to say, I'm doing better than the doctors expected. I'm still living in pain, but it's getting better. They're trying to control it with the meds the best they can. Which is all I can ask. Hopefully this surgery will change my life, and be the upswing to my health getting better

Peace out!

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.