The Ugly Truth about my Beautiful life

This is a post most different from my previous, I (with the help of a good friend) have promised to not edit out the "ugly" and raw truths.
I am not ok
I am sick, for the rest of my life I will be sick. I will wake up every morning...sick. I will go to sleep every night ...sick.
I will play at the park with my children ...sick. I will go to church...sick.
I will help my neighbor...sick. I will date my husband...sick. I will celebrate every holiday... sick.
I will pour my formula and hook up my feeding tube everyday...sick. I will crush and prepare my medication...sick. I will cook dinner for my family....sick.
And I DON'T want to be sick anymore, I hate it for the life I feel it stole form me. I don't want to rest or have limits, I don't want to say that this is ok...It is not ok....I am not ok... I am sick
I am angry, there is always more to anger than just anger...there are emotions hiding under the blanket of anger.
I am scared, I am tired, I am hurting, I am overwhelmed and frustrated. BUT I have wanted people to only see me be happy because I want to be HAPPY. I can be happy...sometimes. I am trying to be ok with not being happy all the time, because sometimes I am not... and that is ok.
I feel hope and discouragement in the same breath, I feel healing and pain at the same moment. At times I am feeling so much inside this broken body that the outside world of light and sound can overwhelm me.
I can feel the sun setting on the survival mode I have lived for the past five years. It has become my safe place. A warm comfort of uncertainty and questions that has pushed me forward to find answers.
There are answers now, and a light of calmness will rise like the sun in the morning.
But for this moment I struggle....to see what woman will I be when the sun does rise, I look for her in this darkness . I can not be who I once was. Life has changed to drastically. I can not even see her in the distance anymore, that is ok... I have learned to much to go backwards.
I struggle as I must decide who I will be, how much do I let this change me...for good. How do I know who I will be...what will my life will look like, which way to turn?

I have been stripped down to the basics of my soul. And I stand here before the world with only a foundation of my faith to hold me up. A testimony of the love of my Savior, and a loving Father in Heaven. A testimony of the eternal plan, that families can be forever, that I am a child of God. That with my faith I will find myself on the other side of this trial, a stronger better me. That I will glean from this pain and difficulty a stronger belief in myself. That all things will be for my good, reminding me when I can not see that, I am loved, I am not alone, and that I am strong enough to do this.
The sun will rise, and I will walk through the next day to the next sunset and then the next sunrise. I will find myself...the new me. The best me...
the best sick me, because I am ok....I am sick...and that is ok.

Finding a balance in chaos

When I was a little girl I enjoyed the thrill of witnessing tight rope walkers. The amount of control and the ability to balance was something I wanted to emulate. It is something I usually feel is just out of my reach. My favorite moments of these balancing acts were when they could pretend to be about to fall...and maybe they were but they were able to pull it back to center and get balanced once again.

Bare Naked Honest Truth....I am fearful of chaos, it panics me to my soul, I need to feel secure with a plan in place and a list of what needs to be done. For me balance was stability, and stability kept me safe. Then I thought of those tight rope walkers. They were not in a "stable" environment on that high wire, they were not safe. They were bringing a little control to chaos.

I try not to let myself ponder thoughts of what life was like "before" I got sick. I am sick...and that is not going to change...so I have to find a new balance for this life... the "after" I got sick life.
There are SO many things I miss and it is not just food :) although I miss partaking in the social aspect of sitting down and enjoying food with my family and friends. It is truly more difficult than I thought it would be, I really thought that my bodies hunger for food would be the most difficult aspect of my feeding tube. It is not. It is the inability to share in the social life that comes with sitting down and enjoying food together. It requires me to find new ways to celebrate holidays and birthday's , date nights, baby showers, weddings, girls night out, movies... I miss having endless energy and the ability to push my body. I miss feeling happy without much effort. I miss freedom of spontaneity... not being tied down to medication schedules and feeding tube schedules...doctor  appointments, testing and procedures...

The list could go on and on...

But the buck STOPS here!

I am learning..
I can not control everything and that leads to relying on my faith more than myself. Not the most enjoyable lesson to learn, but for me a vital one.
I am learning...
to push my resourcefulness to new levels. To think outside the box, even outside the room to make things happen.
I am learning..
that I can trust others to help me and that I am still a good friend
I am learning...
How blessed I am to have the children God gave me, they truly are amazing blessings in my life
I am learning..
To enjoy the moments of blissful harmony when they come, and never stop searching for them when I don't see them straight in front of me....because they are there
I am learning that...
when I can't do it on my own, that doesn't mean I can't do it... I just need help
I am learning that...
sometimes being in control means letting go of it first
I am learning...
to ride through the chaos and not fear it (to much)
I am learning..
how to balance while riding a roller coaster...it might not be graceful but my goal is to do my best to find joy even in the chaos

the struggle for perfection

the struggle for perfection

Well if you know me...you know that  I like things to be "right", in their place, organized and clean. I might have been referred to a time or two as a perfectionist or...cringe...anal retentive. I can testify that a few years with multiple chronic illnesses has eased my passion in perfection.... a little.

Lets just say my house is usually clean... but I don't scrub my baseboards with a toothbrush on a weekly basis anymore. I try not to let  my own OCD weigh in judgment upon those who live a more relaxed lifestyle.... I like clean lines and no clutter....in my own space. I am learning to try to see my ten year olds chaotic artistic approach to decorating... her room is visible from my bedroom.
I am the oldest child of a large family and I think that is where some of my drive for perfection came from. Being a "good example" to 12 other siblings weighed heavy on my mind as a child. I have learned a bucketful of lessons in my life as to where responsibility falls...and thank goodness we are all responsible for our own choices. I also figured out that perfection was not a destination... but a journey. That my goal for perfection would not be achieved in this life ;) but that it could be my goal to do my best in order to be my best everyday.
I know it sounds a little silly but I used to think that if I was perfect.....life would be so easy

 

I wouldn't struggle with trials. Well I can say that I am far from perfect, but that does not change my goal as I open my eyes to a new day each morning.
Back to the idea of obtaining perfection to have an easier life.... If I was only perfect this life would not be so difficult. I will be the first one to tell you that I don't enjoy struggle...but their is a natural high I feel when I am able to accomplish something difficult,

 and that I most definitely enjoy. I currently "enjoy " teaching a 12 year old son to find the joy in the journey. You can enjoy washing dishes with a good attitude and the thoughts of accomplishment. Well that is a lesson I think might take awhile...I still need to be reminded myself at times....like laundry. I've been pondering the word struggle a lot lately... maybe because I have been struggling a little. It is a funny thing how our body's, mind's and spirit's are all tied together, or maybe it makes sense I just don't think about it all that often. My body's health is like a giant amusement park sometimes. The roller coaster in real life is in fact one of my favorite activities... but not at this park, and although the fun house has an inviting name I think I would rather go for a long ride on a happy merry go round.

 At least that is the thought that passes through my mind now as I struggle.
There was a time in my life, not long ago actually. Right after I had survived the marathon of having 4 children in 8 years. They were getting old enough to not have a constant eye. I remember vividly thinking... My life is slowing down a bit, it's kind of boring. I don't want a boring life. Hahahaha I have to laugh at myself because shortly after that thought, 2 weeks to the day, Craig came home and let me know that Micron would no longer be his place of employment. It felt like I hit a brick wall.

We had made it through the many layoffs with confidence before. We had been in our newly built house for about 2 1/2 years. We loved our neighbors and best friends that resided in our perfect quiet little cul de sac. We short sold our house and lived on our savings as we struggled to find work for Craig. I went back to teaching until he found something. It was a long rough six months....we moved in with family... and I started on my road of chronic illness. Thankfully it was one step at a time. If you would have told me then what I know now, I might not have made it. That was 4 years ago...it has been a bit of a struggle.
I share this not for pity, I know that we all have our own struggles. I hope it helps you understand where I am coming from. My life is not more difficult than others, at times it is just more visible to the world. We all struggle at our own pace. Some struggles are self inflicted and others are just part of life.

(and now she finally gets to the point :)
Like a fish swimming up stream

Struggle...
I never liked to struggle, there came a time when I wouldn't even say the word. I want to live a happy life and how could I do that if I admitted I was struggling.
After a lot of down time and the ability to use my mind when my body took a hiatus, I not only began to appreciate the word...but am proud to say that I struggle. Like most other people the amusement park of struggle has it's off seasons, thank goodness, mine just picked up business the last four years.
My mind change concerning struggle came when I decided to look for a definition of the word, to study it's meaning until I no longer feared it.
To struggle is to move forward with great effort. Now I can't say I wouldn't mind moving forward with little effort every once in awhile ;) But like accomplishing something difficult I enjoy that feeling of conquering an obstacle.
I realized that there is no shame in admitting to struggle....It is the moments of no forward movement that I hope to avoid. I want to progress and learn... moving forward...improving...struggling.
Having a perfect day does not exclude struggle. For me moving forward with great effort toward perfection WITH a happy heart is my goal. I am not perfect so I struggle, I struggle forward. I struggle with a happy heart (most off the time) and when it gets difficult I am blessed with those who enjoy assisting me struggle forward,

 but that is another post for another day.
My advice.... Struggle... take life for all it has to give... struggle forward... appreciate the feelings of pain and sorrow for the window they open to see the depth of peace love and beauty. Struggle forward with a happy heart.

<3 a fellow struggler