Fake it till you Make it...hmmm

It's been a saying that sometimes can cause some serious contention. "Fake it Till you Make it" 
I have been at both sides of this swinging pendulum and think I might have finally closed my own Pandoras Box on the subject.
One side says that sometimes you just have to pretend, fake it... you cover up your pain and discomfort and you tell everybody your are "good". Don't get me wrong I can see the idea of this sentiment... I can understand it, to some degree it is easier than opening up, being vulnerable...sometimes it is safer.
My issues have come when I have felt like I was trying to deceive... not just other people...but especially myself. First of all I am happy to share a lot about my medical life... but I was taught manners by a loving Grandma and I have trust issues ;), so I am not one to "spill my guts". On the other hand I have found that some sharing, in the right situation with the right person can be a healing process for all parties. I am also learning the importance of "To Thine Ownself beTrue".
So with that I decided that I am not going to lie to myself... I won't say I am Good when I am not... I won't deny that I am in pain or that I am struggling.
It is real... I am living it...I can't ignore it and think it will just go away.
BUT! and it's a big BUT.... I can't live my life always complaining, letting some pain and discomfort rain on the rest of this beautiful life experience...putting things off and wait for a "good day" to show itself. Time is to precious, energy is a commodity I am not willing to waste in waiting. I have SO much in my life that isn't disease and pain.
So I believe the hidden treasure I have searched for is as simple as a well known scripture turned song...

Ecclesiastes 3:1-8

 To every thing there is a season, and a time to every purpose under the heaven:

 A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted;
 A time to kill, and a time to heal; a time to break down, and a time to build up;
 A time to weep, and a time to laugh; a time to mourn, and a time to dance;
 A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing;
A time to get, and a time to lose; a time to keep, and a time to cast away;
 A time to rend, and a time to sew; a time to keep silence, and a time to speak;
 A time to love, and a time to hate; a time of war, and a time of peace.
SO
a balance in all things and everything in it's season
The balance in all things reminds me that although it can feel like medical things can at times consume my energy and time...I can still balance my life. No it will not always be equal..as in 50-50... at times it might have to be 90-10, but my goal is to keep it balanced, not always "fair" or "equal" but balanced and I think I might be starting to get the hang of that (like a baby learning to hold it's head up... I have got a lot more to learn)
Everything in it's season won't keep me from doing what I love...all of the time....but it does remind me that I need to take care of myself, because I have also discovered that I am important enough to take care for, and that is not a selfish thing. So I will rest and go to dreaded appointments, I will also have to sacrifice sometimes the things I want for the things I need.... and that is OK♥  I am still me...Stacy Lynn...and I will still wear my heart on my heart on my sleeve, I will still give all I can, I am and will continue to be the best mom I can be, a loyal friend , and a happy fun loving girl. I will also be true to myself, so if you ask me "How are you?" expect a polite honest answer...usually I am "Ok" :) and sometimes I am "Good" or even "Great" and every once in awhile "I am here".
So I guess I am not going to Fake it until I Make it.... because I will just Make It...balanced and honest in it's own time.

Taking my own advice...even when I don't want it

Today My SWEET little 7 year old, Bry had a choice to make.... she needed to go to her room, or sit in time out on the stool in the kitchen, after an "incident" with her older sister. Her answer ( for almost an hour ) was a strong "NEITHER"
I tried to  explain that "neither" was not an option... a choice had to be made. It was not the smoothest of afternoons but a choice was finally made (the rule is...if you don't choose than I have to choose for you) She took her time out. :)
Tomorrow I am taking a "sick day" and sadly I wish it was the flu or a cold, but it is my body letting me know that my "break" is coming to a close, with a nice little reminder that I am still chronically ill.
So as I lay on the couch after sending the last kid to bed...I had my DUH and Ah Ha moment Simultaneously ... I have been pondering my options... Do I go forward eating what I want and take advantage of every last second with food.... or do I begin to cut things out of my diet and prolong, well whatever is heading my way. TRUST ME it sounds like it should be a DUH..... but I have enjoyed having dinner with my family, and bbq's with friends. And as I sat there feeling rather ill and trying to decide.... My own words came hauntingly back at me....neither is not an option. I want neither... I want to keep enjoying food ( well... enjoy eating it, not so much enjoying the pain it is causing) So along with the swollen lymph nodes, the easy bruising, the lightheadedness that is joining my growing list of returning cast members for the sequel of "My Happy life as a chronically ill patient" I choose to cut the food and HOPEFULLY feel better longer. I obviously won't cut ALL food until we get to that place medically.... but tomorrow begins a change.... I have my juice boxes of elemental "juice".  It is not a FUN place to be right now... in this body...BUT I had a GREAT SUMMER, and it's not over YET! The difficult thing is that I KNOW what is coming... and I don't want it, that being what it is... I also know what is coming and I have done it before, I have blazed the trails and now I know which ones to take. The GREAT thing is that I had a BREAK...and I am grateful for every second I get to ride on this ride ( It ain't over yet)
A little nervous to post this...BUT I promised myself in the beginning that I would. I am still me... I am still Strong... and I can still live my life... no pity please...because I SO GOT THIS, even if I don't want it ;)

Roller coaster...HANDS IN THE AIR and a SMILE on my face

I know I know... I know, it has been way to long....and I am sorry. So much has happened in the last 3 months I have been CrAzY busy. Let me share.

In March I got the stomach flu (fair warning of possible TMI.. :) still unable to vomit (not as much of a good thing as you would think) but Stomach Flu none the less.... now this is a big deal for me, as usually my immune system is attacking itself so much that the guard dogs are already positioned for an attack. In other words, I don't get "normal" sick. Well I did...and we had family in town ( <3! shout out to our Wisconsin people) for a funeral :( I was feeling worse than normal and was not much of a hostess. But if you know me well...I made it work ( and so did my gracious visitors) Well I was getting really dehydrated and unable to have my formula running.( think of a garden hose pumping food into your stomach while you have the stomach flu AND the inability to vomit! yep good times). I was doing my best to avoid a trip to the infusion center for my four hour hydration vacation :) there was a lot going on, and I wasn't going to miss it. So I asked my sweet hubby to get me some pedialyte from the store...I wasn't getting it in fast enough with my feeding tube so I thought...why not .... just a sip... then for the first time in a L O N G time... not only did I sip it... I felt the cool refreshing liquid roll down my esophagus (when EoE is attacking I can't feel anything in my esophagus ) AND I sipped again.. My husband saw the gleam in my eye (and knowing me all to well) said ..."Don't you DARE! " I dared... I drank the pedialyte.... I could feel it all the way down to my stomach. Now as an adult I will confess my next actions would not be recommended. BUT as an adult I thought Why NOT ;) and I chugged last few gulps of my pedialyte. HAHAHAHA besides being severely dehydrated and having some issues with blood pressure and my heart IT FELT AWESOME. I called my GI (gastroenterologist) and let him know...He let me know he had been dreaming of this phone call for 6 years from me he said.... well I want you to try to eat...slow at first, soups, mashed potatoes. then call me in a week.  CAN I TELL YOU how CrAZy it all was....what happened next I find it difficult to admit to... in pubic...Oh Well.. I ate a CUPCAKE :) and it was AMAZING.
 I had a few more appointments scheduled and saw my new cardiologist ( one of my most favorite people I have met in the medical realm) and she was amazed at the progress....heart issues were improving... come back in two weeks.... two weeks later...NO PERMANANT HEART DAMAGE and the all clear for FULL ON CARDIO WORKOUTS ! Which is what I did as soon as I could get home and change my clothes... 2 mile elliptical :) sweat and everything. I  was On Top Of the WORLD. Soon after I saw my GI who wanted me to eat regularly and then proceeded to take my feeding tube out.... right then and there.. I cried.
 To be 100% honest I was not only super happy and excited but also a little scared about what the future would hold... would I be putting that tube back in any time soon. One thing I had learned through all of the last 8 years of my health roller coaster ride is to TAKE THE GOOD DAYS WHEN THEY COME! and boy did I :) Gym five days a week...eating healthy and MORE ENERGY than I had felt in what seemed like a life time. after about 2 weeks the adrenaline wore off...and I tried not to be afraid. Little things... pertaining to my undifferentiated connective tissue disorder (like Lupus with less answers) started to kick in. BUT hey I am eating and exercising and GAINING to much weight. I was told that my metabolism had been shut down for two years and that it would take up to 6-8 months for things to regulate....after about a month and a half and 40 POUNDS later I am still working out...eating well and doing my best to place my confidence in who I am and not my waist size. I am up to 4 miles on the elliptical Monday- Friday some ab work with the kids at night and a mile walk with my Tayleigh :)( and was finally able to RUN a mile without to much joint pain that I had to stop)
 I think fear has left and I hope it stays away for a little while...if I am adding my hopes in here... I hope that my metabolism turns on SOON and I am able to drop some of this unearned weight! Not everything is perfect and I am beginning to restrict my diet, hopefully just wheat and dairy for now. the best part is that I have learned to do pain... I can do discomfort (  I don't like it but I can do it) BUT having a full day of energy is something I am enjoying to the fullest! I don't know what this CrAzy body has in store for my future...but I think it's safe to say that I GOT THIS :) My kids are glad to have a mom who can taste what she is cooking, and join them at the dinner table. I am good to say farewell to my backpack and tubes and cords (even if it only for awhile) I am SO GRATEFUL to all my friends and family who have been there for me through all of this... I know it was difficult so many times, but because of you I can still smile and find joy! I will do my best to blog more frequently and save you from such a long....long... entry next time.

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