*insert a witty remark about ableism here*

I was recently told that “My partner’s niece has CP and is in a wheelchair! She doesn’t let it hold her back. I sense that same grit in you.”

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Well then. I guess it’s true, to an extent. I am fiercely stubborn. I am fiercely determined. I don’t let the fact that there is no cure for my disorder mean there is no hope in my life. But the thing is, it isn’t always that simple.

Some days, I’m in the emergency room, like this day back in late May. Other days, I’m in bed in pain. Some days I do incredible things – not despite my disability, but because of it. Because I’m living with it. Because it’s who I am. But it isn’t a choice. I live with it – I move on because I have to. Life can’t stop because I’m disabled. But it doesn’t mean I have to be your inspiration. It doesn’t mean I have grit and determination just because I am disabled. It’s just all a part of who I am.

I kNow a Fighter

Photo on 3-2-15 at 7.58 PM

You held me down, but I got up
Get ready, ’cause I’ve had now
I’ve seen it all, I see it now
I’ve got the eye of the tiger, a fighter,
dancing through the fire
Cause I a champion, and you’re gonna hear me roar
Louder, louder than a lion
‘Cause I am the champion, and you’re gonna hear me roar.

This year’s campaign with the Children’s Tumor foundation is I Know A Fighter. I don’t know life without NF. I was diagnosed at three years old. I’m turning twenty-eight this summer. I’ve known had to say my disorder from that age. Apparently it’s cute to hear a three year old rattle it off.

I’ve never known life without NF. But perhaps someday I will. Perhaps some day I won’t see my doctors yearly , afraid another tumor has grown. Some things cannot be repaired – my dural ectasia cannot be fixed, my vertebrae cannot regrow.

But it doesn’t mean it’s hopeless. It doesn’t mean things won’t ever change. But until then,  I’m a Fighter. Until then, I fight NF. I fight the internal and external signs. And I keep on living.

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. 

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.