Showing posts with label neurology. Show all posts
Showing posts with label neurology. Show all posts

Monday, February 10, 2014

you are WORTH fighting for [letters to _______, no. 07]

**Stream of consciousness, raw and rambly, unedited and straight from the heart.

Dear _________,

There is so much I have to tell you tonight, I'm tired, my body is weak, my soul is worn out, yet I can't sleep before getting this out and telling you. I'm afraid if I don't do it now, tomorrow it will be gone.

There is so much I have to tell you. The biggest one is: DON'T GIVE UP.

Don't give up, don't give up, don't give up.

Don't ever put away that piece inside of you that won't sleep, the part of you that KNOWS there is something wrong with you and that one day you WILL, they WILL find it.

Don't ever let that dream die. That dream isn't a dream, it's reality.

One day, one test, one doctor, one person, WILL find it.
And it's going to come out nowhere. When you least expect it.

I can't even tell you how much I'm feeling this right now. I had something happen at the dentist today that I felt was a premonnition of what is to come.

It was a time in which I felt for the first time, I could really see and feel the light at the end of the tunnel.

They wrestled for about an hour and a half just to figure out where the pain was coming from.
I felt myself slip into that part of myself I have learned to reside.

I could feel it come on. The part of me that was like, here we go again. I was trying to explain the nature of the pain. I was trying to show them where. And then I was like, are we really going to find it or are they just going to do a procedure but that then I'm left wondering if we even really got whatever "it" is out of there.

But these people were different. This lady was different, this faculty was different. There was a level of care and concern like I have not experienced before.

Maybe it was because I made a big deal the last couple months about switching student dentists, but you know what, I'm not at all ashamed about it.

Something within me was rejoicing today.
A part of me deep within that was saying, YES, this was worth it.

All the hell to go through just to switch dentists because I was not happy with the level of care I was receiving with the other girl, ALL of it was worth it.

Something within me was restored today.
A part of my self-hood, a part of my dignity, a part of the parts of me that see, hear, experience and feel God.

A part of me I have not felt alive nor restored in so long.

The part of me that was saying, YES, this is what we were fighting for.

I've said I've had so much I wanted to say to you, if there's anything that kept pressing upon my heart to tell you all throoughtout my appointment today it would be this:

FIGHT for people who will FIGHT for you.
You are worth it, YOU DESERVE IT.

If you are not happy with your doctor, dentist, nurse, if you have any shred of doubt within you with their plan, their perspective on the situation, DO NOT WASTE ANY TIME MAKING IT KNOWN.

Don't be ashamed.

YOUR HEALTH is on the line.
You are worth it, it's important.

Today I was proud of the fact that I was the only one who could see that Mazvita was not being treated well nor receving the quality of care, understanding, and competency needed.

I left nearly every appointment this fall in tears. Not from physical pain. That I can handle. There were times even in appointments, during procedeures that I was fighting back and wiping away the tears.

Tears emanating from a deep place within, a wave of grief and nausea sweeping over me saying to my God, the only One who can fully see, God, are you kidding me? Are you seeing this?

I can't believe this.

I didn't like her from the start.
Trust your gut.

I didn't know why but I knew. I knew it wasn't going to work out.

She didn't get it. She couldn't see the full scope of the situation, I was like, I can NOT believe this is happening right now.

I don't have time for this.

Every time I'd have to re-explain my situation.
Every time as I'd hear her repeat back to the attending faculty, I felt that knot again forming in my stomach.

I want to throw up.

It felt like the room was spinning. I was getting that all too familiar feeling of here we go again.

I want you to know that you're worth it.

Fight for someone who will fight for you.
We're the hardest ones to fight for some days, but I'm telling you, I don't know the last time I felt this good.

I had just had a four-hour procedure done, but I walked out of the dentist chair floating.

I can't even begin to tell you how much I've been thinking about you today.
I would do anything to spare you from the pain I have endured.

I realized today too, you might face this too. The whole, do I text/email/tell anyone about this appointment/procedure or not.

The whole, I know that God is in control, whether I have friends praying or not, does it change what is going to happen anyway, do I want to deal with having to tell everyone what happened, how it went, how I'm doing after. Sometimes, most times, I don't tell cause I just want to live my life.

I want to be able to leave the appointment and go on with my life.
I'm still processing myself, let alone trying to explain something to people in words that which can't be explained.

It's to be experienced.
You and I both know, no matter how much we talk about it describe, share, try to depict, only you and I truly know what it feels like.

I'm the one who knows what it's like to sit in the dentist chair for the millionth time.
To gear up for appointments.

To even sit there today, wondering if there was even a point in sharing. Will people be able to understand? They can't fully and we have to accept that.

But, today there was something taking place, something that reached down and gripped my heart.

I knew all of this were things I was eventually going to have to share.

Like I said, I would give anything for you to not have to go through this. The pyschological impact of living with an illness the medical profession cannot see. Test after test, remaining a mystery. Though that word betrays itself upon being spoken because though it's a "mystery," it's not a mystery to the person experiencing it the most: you and me.

We live night and day with a  monster that won't let us sleep. Medication, various treatment plans, have helped our bodies function to a certain degree, but even just being a few to several hours without meds, we are humbly reminded every waking minute that something is terribly wrong.

Something that has changed every aspect of your life whether you've wanted it to or not, something we live with, day and night that does not sleep.

We've learned to conceal our little friends. We've learned what to say and not to say. We stop sending emails, we stop posting health updates, we stop telling people about appointments because we're tired of being judged, people trying to fix us, being burned. We can't handle the pain of being misunderstood again and again by people who have no idea what it's like to live or walk a day in our shoes.

We suffer silently. Yet, we are not alone.

We are not alone.

Today I encountered again the God who sees me.

Everything about this doctor has been different.

This is all totally God, all totally His grace.

That I was assigned this student doctor. Her personality, her competency, from the moment I first spoke with her on the phone last week, I knew this was going to be different.

It's amazing how much a good doctor/dentist can really make a difference.

And the attending faculty, he was incredible.

I heard things I have never heard before.
I was told things I've never been told before.

MY BODY AND MY HEART AND MY SOUL WERE REJOICING.

I wanted to give her a hug.
I couldn't believe it.

I could not believe it.

I'm rambling. I'm tired, but I couldn't not write.

He is healing me. He is restoring me. Fully bit by bit every day.

There is going to be a day, a day I felt I got a glimmer of today in a situation that was a microcosm of this whole journey, a day when this will indeed all be over.

I was dreaming of a day when my teeth didn't hurt. A day when we would REALLY be done, have all the work completed, all the prolblems in my mouth fixed.

A day that I know is coming. When this will all really be over.

I think I'm going back to something I was starting to say then got distracted. As I was just looking back at a couple old blog posts that posted some songs that have really impacted my heart and my life during this time it is that I think part of why it's hard for us to share is we have been on this incredibly personal and lonely journey with you and you alone.

One that it's almost hard to bring people into. There are so many roads that have been traveled, things we have experienced and learned, even as I was talking to my husband, the person who is the most understanding, supportive, and truly in this with me person in the planet, even he, doesn't fully know what this has been like in the way You do. He hasn't been the one who has sat in a dentist chair for the millionth time. Drilling after drilling. Only You Lord.

Yet, I have had you on my heart. Today I was proud of the decision I made months ago to stand up for and fight for little Mazvita. The Mazvita who wasn't protected, fought for, or taken care of as a child, the part of Mazvita that needed healing, needed to know and say, no this is not okay for me.

Because of the Lord's help, great love, and power, He enabled me to jump through all the hoops to demand a new dentist.

Because I'm worth it. My life matters to God and He says I'm worth fighting for.

I want you to know that we're going to get through this. There will be many more rough days ahead, but don't give up. Don't ever stop fighting. You are not crazy and you are not alone.

I know the journey is weary. I know how hard it is to pick yourself back up and head to another appointment. I know how emotionally, physically, mentally, and spiritually exhausting it all is.

It's okay to be weak. To need Him, need others, need  a break.

Remember that this race is a marathon, not a sprint.
We're going to get there one step at a time.

Today reignited my heart with hope.
The fact that they spent such a long time looking for and trying to get to the root of it all, no pun intended, reminded me that there will also be a doctor like that.

The one I've been waiting for.
WHo will dig and dig and dig and be the one to find this needle in the haystack.

Lord, I thank you for all that You are. All that You are doing. In this and so many other aspects of my life.

I thank you, I praise you, I love you.

Dear friend _________, lastly, I want you to know that you are seen.

"And she gave this name to the Lord,
Yes, You are the God who sees me,
I have seen the God who sees."

:: genesis 16:13

Monday, October 21, 2013

a new song [letters to _______, no. 06]

he has put a new song in my heart.
my god who has spoken and who has seen.

the one who whispers to my heart, words he has promised me,
words of what he has done.

"behold, my dear child,
i will restore what the locusts have eaten."

i am fighting for you.
i love you.
i see you.
i know you.
and i am never going to leave you.

i am for you.
i am with you.
i am here.

i will restore you.

and she gave a new name to her god.
"yes, you are my god who sees me,
you have restored what the locusts have eaten.
you are my god who has not forgot.
my god of great faithfulness, mercy, and grace,
my god of unfailing, everlasting love."

be glorified.
for you are my healer.
the one who will never abandon israel even in her long and tireless walk through the desert.

you are my sustainer.

my god whose love touches, heals, restores.
my god who restores what the locusts have eaten.
from out of death comes new life.
life in abundance, more fuller and richer than ever before.

i sing a new song to my king.
our god has not forgot.
________, he has not forgotten us.
we are seen. we are known. we are held.

held by a power greater than anything on this earth.
held by the hands of the one who holds it all, holds us together.
our god whose love never fails.

there will be pain in the night.
but His joy comes in the morning.

he will restore you [letters to _______, no. 05]

"I will restore what the locusts have eaten."

Dear ________,

It's been a busy day. I have so much I have to tell you. I am blown away yet again at the countless ways our God sees and knows our hearts, our every need, how He longs to provide.

He has done that in ways in which only He can.

Encouraged and restored and lifted my heart in ways that only He knew would speak to me the most. I am amazed. He heals the brokenhearted. He saves those who are crushed in spirit and I can tell you last night I was in the pit of despair. The most heartbroken, disillusioned, and crushed I have felt in a long time.

But, I have to tell you something. Before I even get to tell you more about the last 24 hours, I've been wanting to write all day but it's bee a busy day and I'm finally getting a chance to sit at my computer for more than a few seconds and I've got a busy day ahead of me tomorrow so I'll have to share more later, but these words all day have been on my heart:

These eight words that encompass more than I can find words to express right now, words that speak to that which He has been doing the last three to four weeks and really since we moved out here, through now and what He will continue to do. This God who plots for our joy. Who does not bring us a cup of suffering without also bringing with it an offering and over-abundance of joy. Life as we've never seen nor lived it before, life in the fullness of Him whether in the eye of the storm or in times of supposed safety. He is there and He is plotting for YOUR joy.

I realized I need to start talking.

Something happened within me today when I realized, as the fog and the heaviness began to lift and I slowly felt like I wasn't walking through a daze anymore that has shrouded the last few days, it was as if the breakthrough happened instanesouly, and suddenly my eyes were opened.

I had these words enter my mind as the breakthrough began to happen. It was when I realized I have been silenced by my Enemy. The One who does not want this or the story God is telling through the various circumstances and experiences God is bringing me through right now.

I made a promise. I made a vow.

No longer. No longer, not one more day am I going to allow the Enemy to STEAL how the Lord has restored what the locusts have eaten.

Not one more day, will I let him silence me. Keep me from sharing the wonders of your love, who you are, and how you fight for your children.

We are never out of your sight.
There are no lengths to which you won't go to have us.
When one of us is lost, you stop everything, abandon the 99 to find the 1.
We're that important to you.

We matter.
You see your precious children.
You fight for them all day long.
You love them more than they could ever imagine.
And you've given up everything for them. Just to be with them.

In hopes, in desires that we would just simple turn, simply look to You, walk with and trust You.

You who is our Hope.
You who is our Strength.

You who is our everything.
Jehovah Jireh.
Our God is a God who provides.

You love us.
You love me.

You have seen and heard of my misery.
You lifted me from the pit of despair.

And reminded me, restored me, encouraged me, and healed me. Reminded me of who You are and who I am as a result.

I am deeply and dearly loved.
You love me more than I could ever imagine.
And your joy comes in the morning.

His joy may not come right away. It may not come the next morning. Or the next day, or the next.

But, hold on. Take heart. For your victory is coming.

God is plotting for your joy.
His joy comes in the morning.

He has not forgotten us, dear friend.
He is especially, especially near.

And there is so much more to this battle, so much more going on than you and others can even now yet see.

Hold on, I promise you, there is more.
Our suffering is NOT in vain.

He is my peace. He comforts me with songs of joy.
I don't have words to explain all that has happened, all that I do know is that He can heal and restore even our deepest of heartaches, but the times of despair, the times of devastation, frustration, disppointment after disappointment are not bad.

In fact, admitting them is necessary. For we cannot move on until we do. We can't gloss over those feelings in hopes of them just going away. As one of my favorite authors says, there is a cry of the soul that demands to be heard.

This is what my letters are to you. My raw, unedited cries of the soul. Cries of the soul that demand expression, that need a place, and a home.

Our feelings at any given moment aren't threatening to Him.
He knows that working through, admitting and acknowledging them is the first step.

We must bring our full selves to Him. The parts that hurt as well as the parts that rejoice.

There are going to be nights like last night where it feels like it there will never be light again. The times the darkness is so real and so heavy you can't see past or believe there will be dawn.

But then there are also going to be times when joy truly does come in the morning. When He heals us in ways only He can.

God is plotting for your joy. For you and for me.
I promise, it will get better.

The darkness will, when we least expect it, again turn to dawn.

letters to _______, no. 04

Dear _________,

Do you ever feel like life is passing you by? That everyone else is getting to live and do the things you wish you could?

Me too.

letters to _______, no. 03



Dear _________,

Do you ever feel so alone you feel invisible? I don't understand why you and I have to suffer. I don't understand why there are millions of people in this world, many people in my life, and as the prayer requests went around at my women's small group the other night, many people in each of lives living with physical ailments.

I don't understand why there has to be pain. Disease. Sickness and death in this world.

It's something I know theologically and in my head, but an issue I struggle to reconcile with all that is within my heart.

I don't know why you and I have to suffer. Why we have to live with ongoing health conditions that despite our ever living hour and fight to place this thing in its cage and not let it rule or control our lives, its burden is like hiking uphill with lead in our boots and bowling balls in our backpacks.

Our lives and our bodies breaking beneath its weight.

I wish I could take your pain away. And you mine. I wish prayers and the advancement of medicine, and the love and support of friends and people who long to see us made well could make it all better, take our suffering away.

I dream of waking up and everything being normal. I found myself waking up to that dream even yet again just this evening. A dream that came crashing down as I reconginzed that first piercing pain in my legs.

Reminding me this is far from over, I am not yet home.

Tonight, I'm praying for you and for me. For though we feel invisible, helpless and utterly alone at times, our suffering and our pain is not invisible to God. He sees and knows and grieves with us. Even though just writing that last sentence I am reminded of a question that resurfaced Thursday in some of the greatest physical pain I've been in in a long time. If He can do something, why won't He. Why hasn't He. If He can take it away, why hasn't He yet.

These were questions I wasn't even entirely sure I wanted answers to, yet questions that surfaced and just needed to be admitted for what they were. Cries from a heart that is broken, a pain emanating from a place deep within.

A place that knows in her heart as well as her head that she is loved, that she has done nothing to deserve this, yet a place that still wonders even still, but am I, but what have I done to deserve this.

I don't know why you and I have to suffer.

I don't know why life as we knew it got ripped out from underneath us like this, I don't understand or know why it has to be like this.

But as much as I don't want to say this, I know it will all make sense one day.
Hold on.

And don't be afraid to ask the questions on your heart.
For they are there for a reason and often the questions themselves become the answers we're longing for. Oftentimes, those questions begin to be the very thing that lifts, heals our broken hearts.

Hold on.

Our victory, our help, our relief is coming.
One day, one question, one heartbreak, one victory at a time.

letters to _______, no. 02

{the pain we hold inside}

Dear _______,

Do you ever fear that people don't believe you? I'm not just talking doctors, I mean friends, family, co-workers, people around you?

Making new friends, I find I want to keep this buried down within like a secret.

I don't want to let it out for fear of how it will be received.

After the other night when it came spilling out, I found myself facing that as I was talking with girls after small group. The dynamics changed, some of them seemed to be looking at me differently.

I had to wrestle with this very real reality in the coming days: I fear they don't believe me. Which later became, what if they don't.

It's crazy meeting me now at this time and stage of the game. If you didn't know me before, my life and my capacity looks normal. Even to people who did know me before, my life looks back to normal.

Am I being fake, am I wanting/trying to fool people? No, I'm just trying to live my life. Make the most and the best out of everyday I'm given.

I live till it hurts.

There is no amount of physical activity, big or small that doesn't cost.

But, what's the alternative.

I'm going to be tired and in pain if I sit at home all day just as I am if I choose to go out with friends.

It's going to cost me physically, but fill me up emotionally and spiritually.

Living with a chronic illness, especially one that has not been probably properly diagnosed brings a level of shame and scrutiny far too much for any one person to bear. I wouldn't wish this on my worst enemy.

But then again, we all know there are days when we do. Days when we wish others knew the hell we were daily living in. The hell in which we have had to make and look functionable, when it feels like everyone else just gets to live their life. Free of this battle, free from these chains and the myriad of ways this thing rears its ugly head into every nook and cranny of our everyday lives and very existence.

Life's not fair.

Somehow that's strangely comforting as it is disparaging. We wish it was. If it was, we wouldn't hurt so bad.

It hurts when you realize others may not only not believe you, but think you're being a baby/just not able to handle or tolerate pain.

The world of chronic pain is a world I wish nobody had to live in. It's a harsh, cruel place. One that affects not only those afflicted with the pain personally, but those closest in its midst, in its wake. The caregivers in the forms of husbands, spouses, family members, close friends.

It's something that colors everything it touches.

And you find yourself wondering, longing for what normal even was or felt like.
Something that only feels like a dream. 

letters to _______, no. 01

I never thought I'd be a person with a chronic illness. Yet here I am. The term "chronic" illness is one that seemed somewhat of an oxy moron to me before. It baffles logic and begets ridicule.

Don't you just somehow get better? Eventually? Sometime?

How can you really be "chronically" ill?

Living with the daily challenges of a chronic illness is a world I wish I never had to live in. It's one of those things you hear about and can somewhat imagine, but one that can't be fully understood till you're living there.

I wish I wasn't sick. I have been laying in bed most of the afternoon, my body is completely deplete of iron as my supplements from my pharmacy in Missouri have run out and I've been trying to find something remotely close here in California but because of how even something as small as an iron supplement, the wrong mix of this and that can interact with all of my other medications, I just gave up looking. Now I've been paying for it. Ben didn't even know till last night when I brought him something at the library. I've been more and more tired and low on energy the last few days. Today, I couldn't wait to get home from church and lunch with friends just to sleep.

The only thing that got me out of bed a bit ago was needing to go to the bathroom and then after I tried laying back down, the all too familiar most often reason why I have to get out of bed mid-sleep got me again, I needed to take my meds.

It's almost like this game I like to play with myself. It had been more than 8 hours since my last dose (I'm supposed to take my regular meds three times a day or roughly every 4 hours), and as I was becoming more and more conscious and awake, I could feel all the things my body knew but my brain wasn't attuned to while I was sleeping.

I could feel the pins and needles in my legs. I could feel the tiny pricks of burning sensations grow stronger and stronger in my arms and legs, like getting pricked and poked with a sharp needle over and over again, but feeling like its coming from internally. I could feel the muscle spasms. The tightness in all of my muscles that I knew would only get worse the longer I lay there trying to act like it wasn't that bad. Can I make it till morning? What if I just don't take anything, if I'm laying down, won't it be okay.

Life and each day is filled with a million of these questions. I am exhausted. Exhausted from this battle and this journey, I'm more than ready for this nightmare to be over, yet we're only at the beginning of another long stretch of several new treatment plans, new doctors, new dentists, new hopes, new possible solutions, new disappointments, heartaches, dreams.

I never thought I could be sick this long. Living in this alternate-reality that looks normal from the outside, but everything is far from it. I never knew it was possible to live like this, with pain, physical challenges, and symptoms being a part of my everyday daily existence. Life is a blur of activity, meetings, work, relationships, doctors appointments, dentist appointments, crafting, groups, meeting people, managing my illness, and over again, repeat.

I long for a day it almost hurts to much to hope for.

A day when my body is completely healed and restored.
A day when I will suffer no more.
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