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. 

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?

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. :)

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.

Inside a disabled person's mind.

I am disabled. There's no easy, sugar-coated candy-sprinkled way to say it. I was born with a fairly common genetic disorder called NF1 and the vast majority of my other issues stem from it. And the ones that don't are the rare ones/unheard of disorders.

I'll never do many of the things others do. I'll walk with a limp, I'll struggle down stairs. I won't run and I won't jump. I'll sometimes need help carrying things, and I might need help up when I take a tumble due to my ataxia.

But I am still human. Don't talk to me like I'm deaf - I hear you clearly. Don't mock me when my back is turned - I am not blind. And even if I were deaf and blind, I would not be immune to your cruelty.

I am still like you. It hurts me, too, when people act like this because of a disability. But most of all, do not pull God cards on me. Do not tell me that if only I had enough faith, I could be healed. If only I prayed more, I could be healed. For each time you tell me that, I can point you toward a Godly woman who died of breast cancer. I can point you to a Godly man dying of prostate cancer. I can point you in so many ways.

I believe that there is a God who heals, but His healing isn't always physical and isn't always in this world. Sometimes, part of God's healing is using medications. His will may be for that woman to undergo that surgery, with the doctor's using the wisdom they gained in school. His will may be for that man to undergo chemo. And sometimes, I believe God doesn't just want to give handouts and wants us to do things ourselves.

So maybe God wants you to get therapy for your self injury, depression, eating disorder, what have you. We're humans - created to fellowship. Maybe it's God's will for you to see the doctor instead of just "praying" and "having faith" that He will heal - maybe he wants to learn to advocate for yourself. Maybe it's God's will for you to take medication - for you to admit that you cannot do things on your own strength and that you need help.

I wish people would think before they told me faith would ill me. I wish people would think of how much it hurts to be told to pray illness away. Do you think I haven't tried that? Do you know how many tears have been shed, begging God to take away my pain and illness, only for my pleas to seemingly fall on deaf ears? Do you know that I've lived with this for nearly 24 years? Do you have any idea how many people have prayed over me?

Think before you speak. And know that even though I am disabled, I, too, have emotions and feelings. And above all, I am a human.