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’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.

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.

living with, not dying from disease

We’re kinda taking a different spin from Northwestern Issues today, to write about something that’s important to me.

Feb 28, 2011 was Rare Diseases day. And it’s interesting, you know? I suffer from a variety of “rare diseases.” I’m an alleged “medical oddity.” But when I look in the mirror, I am no different from you or you or you or you. I have two eyes (albeit one is cut off in that picture. Fail). I have a nose, a mouth, ears, and hair. I smile and I laugh, but I also weep and I cry. My disorders may one day take my life, but that doesn’t mean you should be afraid to get to know me.
I may always walk with a limp, even if I don’t always have crutches. I may always suffer from back pain, even after back surgery which will allegedly help it (famous last words, Dr. Dude). There is no cure for my three throat problems, just monitoring. Add in all my other array of stuff, and that’s my life.
But you see – I am just like anyone else in many ways. I laugh and sing and dance and hope. I weep and cry and grieve and mourn. I have passions and dreams. I love anime and manga, monkeys and armwarmers, RENT and The Princess Bride. Take away my health problems, and I’m still very much me.
I think at times, I tend to let my health issues define me, as much as I try not to. On one hand, I claim to not let them define me and that I am still me beyond them all. But on the other hand… they very much are me. I sometimes can’t hang out with friends (and feel like a friend failure) because my health holds me back. I fall behind in class and ask for extra help because my pain flares. I miss on hanging out due to doctor’s appointments. Instead of spring break being a time of refreshment, it becomes an ideal time to fill up with doctor’s appointments so that I don’t have to miss class.
And what I don’t get is how people think I’m strong, how I’m brave. How they couldn’t do what I do. But you know what? When it’s your life, you learn to live and adapt. I don’t have a choice if I do it or not. You don’t know how I do it? I don’t. Some things give. Some things fall to the wayside. Not everything gets done. It’s life.
I don’t know what the true point of this entry is. Maybe to see what discussion it spurs about disabilities. Maybe to make people think of what it may or may not be like. Or maybe because my poor blog was looking just a tad neglected and needs life again.