this is your life, are you who you want to be?

I’m kind of freaked out at the moment. Okay, let’s rephrase that. I’m very freaked out. I very much want to go in the ministry. I want to teach, to reach, to help. But I don’t think that Director of Christian Outreach is right. I’m not made to witness to people! I can’t do these face to face convos, calling people to faith! I can’t help a pregnant woman, because I don’t fully believe that abortion is wrong. I can’t help a gay person, because I don’t know that it’s wrong to be gay and I’ve become more accepting of it over the years.

But how can I be a director of Christian outreach when bringing people into the church freaks me out? I don’t want to bring new people in – I want to help the ones who are here. I go into a cold sweat, panic, puke, cry, clam up, and my mind goes blank when I have to do this stuff – even though I know it all logically. I can do it over a messenger. But if i have to do it in person? It’s a living hell. I’m not made to do this! I want to teach! I want to read about Mark (my favourite gospel) and make it relatable! I want to play with children! I want to do young adult ministry! (I can’t deal with teenagers :P) I don’t want to pull new people into the church! I’m fine with helping the broken, Lord knows i want to help those who have been broken be it by the church or by life or both. But I’m not the one to pull them into a relationship with Christ.

I’ve been struggling with this for awhile. It doesn’t help that my eating disorder is out of control, it doesn’t help that my pain and depression and ADD are not medicated. (I go to pick up my Remeron  tomorrow). It doesn’t help that I’m struggling to pass math. It doesn’t help that I’m trying to find an apartment, move off campus, line up doctor’s appointments. And at times it feels like I’m doing it all single-handedly. It doesn’t help that I feel so stressed out.

It’s like I’m playing Pokemon, and I’m up against a trainer who has the attack that’s super effective against me. We’re down to a grass pokemon and a fire pokemon, and I have no other pokemon left other than my poor Leafeon and they’re kicking ass with Rapidash. I can’t flee from a trainer battle, and so attack after attack is hurled at me until I faint, until I black out.

Y U PICK ON ME? THAT NO IZ NICE.

Ahem. Anyway, I’m struggling with this. This is my life, is it who I want to be? I try to make the changes to make things better but it’s hard. And there are some things I cannot change. I guess it’s like the serenity prayer:

“God, grant me the serenity to accept the things I cannot change,
Courage to accept the things I can,
And wisdom to know the difference.”
It just seems like such a struggle some days. Every attack is super effective, and wears me down more and more. I just don’t know what to do anymore and how to keep pulling through. 

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.

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.

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.

So tired that I couldn’t even sleep

December 3, 2004.
3:43 AM Eastern Standard Time

“sometimes, i just want to give up. i just want to scream. and cry. just to avoid the look in people’s eyes. just to avoid the look in people’s eyes. it’s why i hate talking to people, you see the pity in their eyes, not only pity, but concern, but love…

Did I say I hate love? I really don’t know. I hate pity. I have having people worried about me, and concerned. And love…it almost scares me. I’m not talking about a boyfriend “oh my gosh you’re so cute” love, or a grandmotherly “I want to squish you” love, I mean a more of..compassion? a more of I care about you, Angelique love. and in a way, it does scare me. having people love me. having people care about me. That honestly is a scary thing, because if I screw up, I have people who will be worried about me, because they do care. If I show them how much I’m hurting, I have people who will be worried about me, because they do care.

and it’s just…I don’t know. I don’t even know anything anymore. Well, I know stuff, saying I don’t know anything is like saying a fish doesn’t know how to swim. and I just want to break down. and let someone hold me, and let me tell them what all has been eating at me. and it just seems…like I can’t. like there’s a wall.

And I know I’ve always been one to build up walls. I’ve built up walls for so long, I don’t know if there’s anyway to tear them down.”
****
I wrote this 7 years ago. I was 17, homeschooled, and still living with my father. This was before all the shit hit the fan.

I wonder the same thing this days about love. And walls. Do I put up walls to protect myself, or do I put them up to protect the ones I love? Do I really love? Love still scares me so much. To allow myself to be loved, and allow myself to love. To be that vulnerable, that open, that free with someone. I don’t know that I can allow myself to do that… and it scares me because I almost like my walls. They’re not the best for me, but they’re safe.

How do I tear down and allow myself to be vulnerable?