Monday, July 25, 2011

Life, now.

Wow, it's been a while. I received a few emails from fellow bloggers, and some facebook messages so I figured I would come on here and force myself to update. Life has become hard. Although, I am proud to say I haven't been in the hospital since June 20th! A big improvement for this year. I usually find myself in the hospital a few times a month. One of the big problems I have had is the feeding tubes. I have two of them, one in my stomach, and one in my intestine. The one in my intestine has coiled back in my stomach so much that I've had it replaced four times. Their last idea last month worked, although it is more painful. They put in a bigger longer tube and now it seems to be staying put. I was able to gain some weight and eat a little bit over the last month, but of course the consequences are painful. One of the reasons that I haven't been in the hospital is the realization that they can't do anything for me except give me pain and nausea medication through IV and all that does is give me a break. Ultimately, I always go back to the same starting point. I figure, it's just an expensive break and I choose now to attempt to struggle through it at home. There are treatment options that I can explore but I feel are too drastic to consent to. Stomach removal, and gastric bypass are options but do nothing ultimately for the pancreatitis. Pancreas removal, partial or full is an option but would alter my life significantly forever. A pancreatic nerve block is an option but only works 50% of the time. So, I choose to not follow through with any of those options at this time. If I were older than 29, and the chances of improvement were more than slim to none then of course I would have a different decision to make. All of those options at this time would change my life more so that it already has been changed and come with their own separate set of problems. Do I live with pain everyday already? Yes. But right now, I am still holding onto the hope of a different outcome that would at least make life tolerable. I am on so much medication that it is crazy. Normally if a person takes 8mg of dilaudid, they are at least knocked out. Not for me. That 8mg of diluadid is also mixed in with another pain killer, a series of uppers and sleep medication. Yet, I find myself unable to sleep most of the time. Sleep would probably come easier if it didn't cause so much pain just to breathe. During the day, I have learned to breathe shallowly as it's less painful, but eventually a deep breath is necessary and awful. A sneeze is typically described as an "Ah-coo" sound, however mine is now "ah-chouch!" Laughing even hurts, I just double checked because typing "ah-chouch" made me laugh a little bit!

With that being said, I will go ahead and confess--- I have found myself in a place that I can only describe as dark. It's very hard to admit, and very hard to realize. People say I am different now. And surely it is to be expected. I was never supposed to make it out of the ICU. The majority of people in the situation I found myself in, don't make it out. I should be thankful, yes, I know. My daughters now 6 and 4 still have their mother. Even though if at this point I find that all that's left of me is the shell. I feel like I've lost my spirit. I am more defensive and argumentative. When I remember who I used to be, I was fun and random. Quirky even. My life can no longer be that. I have to plan for pain. Sitting down hurts, so I need to either be completely vertical or completely horizontal. It's been almost a year since I have been able to work now. My savings has gone completely to the cost of medical care. And perhaps as early as the end of the year we may no longer be able to afford to live in our house. A weight and burden that's takes a heavy toll on one's soul.
I have always thought of myself as fortunate and lucky. While I do still consider myself those things, it's different now. I have a family and an obligation to them that I am unable to fulfill. My husband and I have always been able to do the things we love. He loves to teach, and that's what he does. I love to talk, and that's what I did at my job. I got paid very, very well just to do that. A task that I now find to make me more nauseated. At this point, I am unsure when I will be well enough to return to "work." I say "work," because I loved my job. I was great at it and it really didn't even feel like a job. I hope these feelings change. I want things to be different and I am pushing for it. No matter when that is, I find myself feeling like it will be too late to catch up. Part of me wishes this was my fault. That I was one of those people that just drank way too much alcohol and brought it on myself. But I didn't. In fact, I hate the taste of alcohol entirely. Anyway...

I want to take a minute (quite a few of them, actually) to thank the constants in my life. My family. All of them. While they may never read this, I still want to put it out there. From my husband and children, my in-laws and my friends who are my chosen family members. You've been amazing through all of this. When things seem like they can't get any darker the visits, text messages, even something as small as a missed call has had an impact on my life. I've missed so much of everyone's life, but you all make it seem like I was there. I don't remember New Years, my daughters birthday, or barely even my birthday because I was incapacitated but it doesn't feel that way because I know they were all there. They've smiled for me when I couldn't bring myself to smile. Dried my tears when I thought I have cried all I could cry. Held my hand and been there for me, for us, for my family when I couldn't. There are no words that could possibly convey how grateful, thankful, appreciative (I know I just said no words!), and humbled I am.

There is also one other constant that has been in my every day life that perhaps maybe I have taken for granted in the past but now feel I need to mention and thank. It's not a person, per SE. I have turned to it before when I needed strength and inspiration. It's always there when I need it. And this year more than ever, it's been there for me when I was in a hospital that was too far for my family to come see me often. Whenever everyone was asleep. When I was in pain, in more darker moments than I even find myself in now. It's music. It's always with me (Thank you iPhone~!). There are a lot of "things" we have that we take for granted and I never truly appreciated music until this year. March, specifically. I always listened to music, but I hear it differently now. It takes me places I can't take myself, emotionally and spiritually.

In March, I found myself isolated. Alone in a hospital that was too far for my family and friends to come visit more than once a week. I was there almost the entire month. After spending all of January, and 99% of February in a different hospital. In hospital time, it felt like years. Life of course had to go on without me. I knew that. My daughters still needed to be attended to and loved. So, I retreated back to music, and back to one musical group in particular. A group that my husband introduced me to when we first met. We went to their concerts when they were on our side of the country, and I even was able to obtain autographs by sneaking around back to the venue almost 8 years ago. When I heard them for the first time, I loved it. I listened to their music over and over again. But honestly, I don't think I really heard them until this year. Until March. I listened to them so much when I was pregnant with my first daughter that their music soothed her as a baby. When she was a baby, she called them "treasure," and still asks to listen to "treasure," even today.

Who is this musical group that I have listened to day in and day out since March? Their name is Dredg. And like I said, I really never truly heard them until this year. I used to pick and choose which songs I listened to, but I no longer do that. I turn on my I-pod, go to Dredg, hit all songs and shuffle. From the moment I start it, to the moment it stops playing I KNOW I am going to hear 97 songs, for 5 hours, 46 minutes and 15 seconds. What am I going to hear? Everything. They deliver to me every emotion I have ever felt. From darkness, to pain, to happiness, inner soul searching. They do what no other musical group has done for me--- they say what everyone in the world is thinking or has thought in their lifetime. When I am in pain, and want to know that other people have felt pain; they give me that. When I feel like my life is dark, and I need to know other people have been in dark places, that it's not just me; they give me that. I know their music so well at this point that I could speak in nothing but their lyrics. I could answer questions and have conversations with just their lyrics. It's not just music and vocals to them, it's instruments too. I can take their words and incorporate them into my life without ever knowing the story behind them. Even the instrumentals are moving to me as well. It takes talent to be able to make your audience apply their own life, feelings and meanings so effortless, they seem to make it for me. The rainbow of emotions they themselves put into their work just flows freely to me now. I actually HEAR them, and feel it and I don't feel so alone on nights like these when I can't sleep. I may never know their story behind the words or behind their sounds but that seems to matter less to me now than it did before. I always asked "why was this written, what is the meaning behind it?" Music isn't about that anymore, not for me. Dredg also has always had impeccable timing with their releases. While in the hospital in March my husband sent me a message with a link to a song they just released this year called "The thought of losing you." The time, like I said was impeccable. And you can probably guess by the title of the song that it was one that hit home for me, for my family and for my husband.

Do I still listen to other things, yes. Even stuff that I consider mindless fluff? Yep~! Sometimes fluff is good. But this year, I needed more. I wanted to know that other people ask themselves the same questions, wonder the same things, feel the same feelings, have been to the point of no return and came out able to share it, and the most important feeling I found. Hope. A present that I will cherish forever.

Here are some lyrics that I love:

"Maybe you've never seen it, maybe you've never been through it. It's the only way to understand. Save your clever statements. Brave your severed view of it. It's the only way to understand it."-- Convalescent

"Pessimistic yes, it may seem. But if you’ve been there, you know what I mean.
A struggle and suffering that won’t go away. It won’t go away."-- Stamp of Origin: Horizon

"The thought of losing you is not an option. The thought of losing you never was. The thought of losing you is not an option, it's not an option. After all this pain, the pain's no more. After all this pain, the pain endured. After all this pain I'll be sure that the future is bright. Come follow me."-- The Thought of Losing You

"We’re drawn together by accident. We’ll be forever with these words and melodies they’ll guide us through this speck in time. We’re trying to get the missed attempts.
We are forever with these words and memories they’ll guide us through this night."-- Mourning this Morning

"Was put in a round room and told to sit in the corner."-- Light Switch

"Pages of happiness to be read, although that book hasn't been published yet. Feeling like we've been through this all before. You'll get over it."-- Where I'll End Up

"It's not that simple. I've needed it from the start. To guide my way. To be okay. I've needed this from the start to wake up. If all else fails, if all turns to dust. We'll set sail on a ship built from trust. If all else fails, if all starts to rust we'll set sail on a ship built for us."-- Not That Simple

"I'm the addict on the corner. I'm the lawyer in the tower. I'm the body with the coroner. No, the leader with all the power. You're the pillow, the cool side. The sand during high tide. The cocktail, poolside. The water when clouds collide. From the inside out we were formed. From the inside out we will fall. Soon this all will come to an end."-- Sang Real

"Never content nor satisfied,
Intentions of self,
Massacre change and history,
Borderline paranoia,
Yelling out their own right…
Does anybody feel this way?
Does anybody feel like I do?
Half of me is gone,
The lonesome part is left,
I cannot find the other half."-- The Canyon Behind Her.

"Watch it explode
While it’s not impossible for flowers to bloom and grow,
Next to graves, and babies are born in the same buildings where people go,
To pass away, to pass away…
Pleading with nothing,
Why don’t we lecture about something?
Protest the way, we’re passive today."-- Triangle

"I can’t even concentrate on this,
It’s over thought, anticipated,
The pen ink is running dry,
It’s been thrown to paper and wasted,
Creativity has been blocked and over tasted,
Maybe in time, I’ll appreciated it…"-- Sanzen

Who am I kidding? I like them all. And would have to put all of them here. If you haven't checked them out, you should. Well, that's my update. I don't know when it'll happen again. Like I said, sitting hurts... a lot. I hope that everyone is well and perhaps found some new music to listen to. After you check them out, check out The Canvas Waiting. Maybe my next blog update will be about them. ;)


Laurel said...

I can't imagine what you're going through, but I think it's so admirable and brave of you to take the time to put it all down in words. I know that this will serve as a type of comfort and inspiration to others going through their own darkness and terrible pains. You are such a strong person.

I'm glad that you have the music... I have always depended on music in times of darkness I think. I have not heard the music you have written about here, but I will look them up and check them out.

Cmcelest said...

I have been thinking about you constantly! Rod and I want to come visit soon. Hopefully you'll be up for visitors in August sometime. Love you and miss you!

Rune Ariala said...

I'm thinking about you and your family. Remember that every day, new things are happening in the world of medicine. Keep up your hope!


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