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.

speechless. humbled. and amazed.

I. have. no. words.

Take advantage of this rare and precious moments, folks, because for a girl who can talk a mile a minute till next Tuesday, this gem is one to be appreciated.

I have no words. I am simply in awe. Amazed by my God.

I feel energized and alive like never before.

I don't have to words to describe all that I am feeling right now and all that is happening within my heart. I feel like my head and my heart are gonna explode. And I'm so excited. I have been on cloud nine, giddy like a school girl since I left the office this morning of a job that I am still humbled by all the ways and things God orchestrated. The Lord is doing so much. I am blown away and grateful and simply in awe of Him.

His love never fails.

a grateful heart

Today, I am feeling excited, energized, enthusiastic, alive, valued, seen, known, treasured, loved. Encouraged, determined, grateful, full of hope and peace. Thankful for the God who gives and takes away. Is the Healer and Restorer of all things. Jesus, thank you for your grace and tender mercies. The way you love and take care of your children. The way you never leave their side.

-- it is well --

he refreshes, he restores my soul {psalm 23}

- one of the photos i took during my first time seeing the pacific ocean a few weeks ago, fell absolutely in love. going to be beach is a religious experience. felt baptized by the water. surrounded and reminded of how beautiful and big is our god.

He has restored me.

I feel rested. I feel renewed. I feel restored, healed, made whole. I do not understand all the ways the Lord provides, all the ways in which He truly meets His children wherever they're at, comforts them, lets them be angry and throw a fit when they need to and love them all the same, but He does. He isn't afraid of my anger, frustration, questioning, disappointment in Him, He longs for me to just come to Him, with my hurting and broken heart, just as I am. I still find it odd and strangely puzzling, yet so totally God that the feelings and things we're often most afraid to voice, admit and bring to Him, are often the very vehicle that leads us to the pathway of healing and peace. "Our wounds have to be shared to be healed," He sees and knows our broken hearts. He longs for us to quit trying to be strong, act like we have it all together, constantly profess unbroken faith and hope in Him and simply admit when we are weary. He has restored me. In more ways than one. "Yes, You are my God of great faithfulness, my Jehovah Jireh, my God of unfailing, everlasting love." Father, Jesus, I thank you. Thank you for saving a wretch like me. Again and again and again. I don't know where I'd be without your grace.

-- our wounds have to be shared to be healed --

Ironically enough, getting out of the feelings, all the yuck and hard within my heart that I can sometimes feel ashamed to feel, or ashamed to let others see, doing so led to being healed. I was reminded of this as I was chatting with Ben and realized I already felt lighter. I already felt this heaviness and weight lifted, and again as I was washing dishes and doing a few other things and being able to engage with the world again, feel like myself again, the smolten anger no longer burning like a raging fire within. I realized in that, something I deeply value and believe, but somehow had forgotten. How important it is to acknowledge and deal with all we are feeling, how the feelings we're afraid will overcome us if we let ourselves feel them fully, are the very vehicle that leads to our souls being free, of us moving past those emotions to where we can come to a new place and encounter god in the midst. While I do process and acknowledge my emotions alone and with my husband and friends, there was something about me posting it more publicly that I needed to do. I don't know why and I can't explain it. Part of me facing and choosing to no longer let these fears and insecurities control me. I found that as I shared, as I acknowledged and typed out all I feel I couldn't share, in the process, I was healed, restored, made whole again. My heart is still tender, my emotions still raw, yet He is healing and has healed me. "Our wounds [truly do] need to be shared to be healed."

how long, o lord

this is how i feel right now. i feel tricked, i feel betrayed, i feel disillusioned, angry, and depressed. i don't understand. for the life of me i cannot understand. it feels so unfair. i just want out of this nightmare. i want to wake up and have this all be over. i'm damned if i do, damned if i don't. i don't care anymore. i don't know why i even try. people can't understand. or why i don't write on here or email or post health updates anymore, people are going to misunderstand you anyway, so what does it even matter. i don't care anymore. i'm just going to let it out. i can't believe where i was two weeks ago. the darkest and most devastating setback physically we've endured in years. it catapulted me into what it was like the first six months to a year i was sick. then breakthroughs. recoveries, victories. the week after that was a different story. then this week. all up until yesterday was fine. all up until yesterday afternoon. i just don't understand. i don't want to be in this anymore. get me out of this hellhole. i would give anything to wake up and have a normal life again like everybody else. my heart can't take it anymore. i'm tired of it. my patience and hope has worn thin.

yesterday was the first time i felt it. the morning treatments had me in good spirits. i felt like i could see light at the end of the tunnel. i still knew it was going to be a long however more month, year process, but that quickly evaporated by the afternoon. for the first time i realized something i have felt/fear/entertained from time to time but a reality that became far too real as i sat there again in the dentist chair with a millions eyes looking at me. there may never be an end to this.


i feel wounded, i feel hurt, i feel defeated, i feel crushed, i feel disappointed, i feel discouraged, i feel disillusioned, i feel furious, i feel vengeful, hateful, humiliated, betrayed, disgusted, offended, infantialized, controlled, vulnerable, bewildered, and trapped.

and i usually don't write on here, but i don't care anymore. people don't get it or understand anyway so what's the harm in being even more judged, looked down upon, dismissed, and misunderstood. i say people, but that doesn't mean everyone. i have a handful of friends who are supportive and do get it and understand. but all of us know no one can really fully know and understand what we are going through unless they are going through it. no one who really knows, gets it and sees like god. this isn't just our situation, this is everyone. all of us have hard and painful things in our lives that bring about this loneliness because it is a road only we full know and understand. this is my friends, this is my family, my acquaintences, the people i envy. i know none of us on this earth feel completely understood in all our circumstances.

sidenote, but that just needed to be said. continuing where i was going.

up until now, god has given me patience. but that patience wore thin at my third appointment at USC dental, a four hour long mind-numbing session with a student dentist i'm switching from and going to go with the guy i worked with yesterday, then things were okay, but now i've lost it again. i found myself as i came back to our apartment, already fragile when i was out there trying to have a conversation with them,

--
okay, so i got interrupted. ironically, after writing all of this, i am feeling better. maybe i should give this blogging thing a try again. i came back to my old blog because i realized i needed something familiar. so much is changing, new and different in my life right now and my heart needed a familar place where it could be raw, real, unedited, come undone.

maybe i will blog again, maybe it is good for my heart. so much of what has held me back from posting on here or my other blog or health updates in emails or facebook save the handful of friends i email regularly with health updates/prayer requests and other things in the midst of our transition, is my fear of what people will think of me. this sound juvenile, but we all know it isn't. i want to be free. i want to stop caring about what people may or may not be thinking of me. being in a situation with living with an undiagnosed illness only heightens this insecurity. it brings a level of shame i cannot describe.

a level of shame i was painfully reminded of yesterday as i was met by stares and silence when i was grilled on why i was on all this medication, as if i want to be taking all this prescription medication at my age, and when they asked what the diagnosis was, what the test results said, and i had to say, every test has come back "normal," have you seen a neurologist, have you seen a this, that, the other, yes yes yes, i told them. and what did they say? what have they been able to figure out, and i had to hold it together even though i was seconds away from tears and tell them, they haven't been able to figure out what is wrong yet. then i nearly lost it when i was grilled on dental work in the past. as if i want to be here.

as if i enjoy going to the dentist all the time. i just want my life back i told them. i don't want to be here and have to have all these procedures done all the time, we just want to fix everything as fast as we can, we don't know what got us here, but we are fighting and want to get it all done. i'll probably regret posting this later. i'll probably do what i always do and take it down, make it private. but for now, i'm letting it out. i'm choosing to not be shackled by my fear of others' opinions of me. i am choosing to do what is good for the sake of my heart, wherever I'm at, regardless of my fears of what may or may not happen. i just want to be free.