A Look Ahead at 2015!

A few years ago, I read a book named The Shack. In The Shack, there is a struggle for a man to find peace with his young daughter's disappearance.  The Shack is a story of sadness, turmoil, trauma and ultimately triumph.  An emotionally charged, spiritual journey begins, then meanders along a painful path of realizations, tears, anger and ultimately --forgiveness.

Over the past few months, I've recalled this book many times--how the man refers to his daughter's disappearance as "The Great Sadness", lines like "before The Great Sadness entered our lives" and "after the Great Sadness came along".  I remember reading this book and feeling grievous for the man.. even flipping to the back of the book many times to see if the story was truth or fiction, not wanting this to be real...yet wanting the healing that took place to have validity to it.

Now, barely two months after being faced with a horrific family event, I sometimes wish I could find the fictitious cabin from The Shack, g o there, seek refuge, healing and a real face to face with God.  You know, sit down with Him, ask a few questions, perhaps gain a little insight into the future-- really see what all of this is about. How does this fit into The Plan? Where do we go from here? How do we move forward?

I really have no questions about my life to this point...my story is simple, true and yawningly unheroic.  Yes, I've got an abuse story, a cancer story, a bad health story, a few brain surgery stories...but really-- Who doesn't have a story that parallels mine? Nothing really stands out.  I did the typical things in my story-- I lied to myself about my life, I said it was okay to hide and cover up medical expenses just to keep the peace in the house. I said having cancer at age 25 wasn't a big deal.. I mean, I thought it was at the time, but was swiftly put into place on that one...my medical issues were all in my head, I was a hypochondriac just looking for ways to spend money on medical bills....and most recently (a year or so ago) I was told that during those years I was a prescription drug abuser... (FYI-- it's impossible to get high on anti-inflammatories and antibiotics)---Funny how these things are said.. then evoke some type of validity just because they are heard.

Imagine my surprise, relief and vindication upon the diagnosis of Chiari Malformation Type 1.  This obscure, little disorder had been affecting my health since birth..waiting silently to be discovered.. tossing out little clues like breadcrumbs..but on a trail no physician wanted to follow.  Weak cry as an infant, tooth crumbling as a child, scoliosis as a teen, crazy scarring issues after every surgery (causing the need for more surgery) as an adult, random lipomas appearing on my body, stress fractures (one from simply walking on the beach) that wouldn't heal, crazy breast discharge with no apparent cause (now we know my pituitary gland was flattened and not working)...until vertigo hit me in 2012-- I had no answer.. I only had the voice in my head saying this made me less of a person, less of a wife, less of a human being... and that I cost too much to keep alive.  I felt like every move I made had a dollar sign attached to it...until one day the feeling suddenly stopped.  That gnawing feeling of unworthiness just packed up and left.

That day didn't come when I filed for divorce and it didn't come when I admitted my money failures, my reasons behind trying to cover up the expenses.  It didn't come when I accepted my part of the responsibility for the divorce or even when the divorce finalized and I felt free for the first time in years. It didn't come when I took more than my share of the debt because I had such guilt, though I had only about 1/5th of the salary.   Still, I felt like a dollar sign, a balance sheet...an unwanted, unnecessary burden.

As I was slowly coming to a happy place in my heart..finding joy and love again-- then the Chiari diagnosis arrived.  Along with the vindication came what I feared most-- no, not brain surgery-- that was really no big deal.  What I feared more than having my skull cracked open was the medical expenses, being a burden to my new husband, having him possibly feel the same way about me as my previous spouse.  I feared him yelling at me for being so expensive,  costly to maintain.. being, once again, not valued.   I feared it so much, I refused to let him pay for my medical expenses. My first brain surgery was only covered at 50% by my insurance and I was off work for six months.. so I used my savings for my expenses.  I was determined to NOT relive my former life.  I was frustrated, disappointed in myself--and totally stopped loving my body. My body became the enemy.  I became, once again--unworthy. The gnawing feeling still firmly intact.

Now, please understand. My precious husband did not facilitate this train of thought...he just strapped himself in the front seat of my personal roller coaster of emotions and held on for dear life.   I became a vigilante of sorts about my finances...  I didn't need his help...I could do it all.. and I would ask the court, the law, the powers that be to uphold the parts of my divorce decree that had for some time gone ignored by my former spouse (and FYI--that battle still wages on-).   There was only one little hitch in my plan... one minor detail I chose to ignore.  I, in fact, STILL have Chiari Malformation Type 1 --and a pesky arachnoid cyst.  I have physical limitations.   However, I was determined to keep working as an RN.. to make my own money, to manage it all.

So, six months post op, I went to work in a lesser RN job, at about 75% of my prior salary.. working three 12 hour shifts in a row...and totally wiping myself out.  I did this for six months, before my husband relocated with his job and we determined working that much was not great for me.  We determined this by default.  That default being brain surgery #2.   Here is where financial humility started setting in.  We had better insurance..so the expenses weren't as bad (which was great because I was still paying off the first surgery)-- and I was coming to the realization that nursing was not a great fit for my body.  And yes, I was still mad at my body about this.  What couldn't it just conform? Just behave for once... just get a good report?   That gnawing feeling was growing larger teeth. My still yawningly unheroic life just needed a little health boost..a little light at the end of the tunnel. I needed to feel like I could still have a purposeful life.

So, I poured myself even more into this blog, into a local support group, into helping others that I came in contact with in my same situation. Bob and I started our own business with a product I believe changed my recovery..a gleaming light could be seen at the end of the tunnel. This time, I was working at four weeks after surgery, had never felt better and for once, I was sharing my financial burdens with my husband...and to my great surprise (which should have not been a surprise), he was totally fine with it.  Never one negative word about my medical expenses escaped his mouth.  Not one.

I became fulfilled with my meager nursing work and my advocacy work with other Chiarians like myself.  Even when expenses were tight-- I never felt guilty.  I felt (and still feel) totally loved and supported.  Yet my soul still ached for a little more.  I was busy taking online business classes.. trying to get a grip on what my true desires were, while at the same time telling anyone that would listen (which were very few people) about this new product I was taking. I was excited, encouraged and living a great life.  I began to love my body again. I traveled at the drop of a hat.  Eager to hop a plane for a weekend jaunt with my husband, a business trip, or to help out a Chiari sister, yet all the while with that still small voice that said there was something more.

This past August while in Paris with my daughter, that something more came to light.  Magically, my purpose became clear. I arrived back in Dallas with new vigor, new vitality...finally it all made sense. How can I travel the world, still help women (and maybe a man or two), write--and afford it all?  All of the pieces fell into place and I embarked upon the path of becoming a internationally certified transformational coach... Perhaps you've heard of life coaching?   Yes, I help women transform their lives by resurrecting the parts of themselves that were buried due to abuse, divorce, health issues. Women who have lived for others so long that they don't even know what THEY want anymore.  Women like myself.. with what they deem unheroic lives..that are, in fact-- miraculous.

So, I embark on this journey..gaining momentum as I go. Speaking my truth, working on my wealth consciousness, getting clear on my desires in life, culling the naysayers, back biters and just plain mean people from my life... and feeling really good about where I was headed.  One day realizing the gnawing feeling was nowhere to be found. Gone in a poof- as if it never existed.

Then--crime hits our family.  I mean--it smacks us down.  Hard.  Sometimes I feel like I'm picking gravel out of my face from hitting the ground so hard.  Some days I can't breathe. Some days I can't talk.  I look back on my life to this point.  The life I thought I had survived, overcome, grown past.. the unheroic life...and I look forward to what life will be like from now on.  I realize we will forever be divided into the before and after of a Tuesday night in October...and everything up to this point has been merely a dress rehearsal.  Now-- we play for real.  Now-- we play for keeps.  Now- the show must go on - and with a vengeance.

So here I am today. The day that marks two months since "IT" happened.  I awaken in tears, which is almost a daily occurrence for me.  My daughter, home for the Christmas holiday, is asleep in the other room.  My daughter that normally never cries, but whom I've seen cry more in the past two months than in the previous 22 years combined.  The daughter that I am in awe of for her bravery, her resilience, her raw tenacity.  I know today I will put her back on a plane and send her out into the world where I can not protect her.  I woke up thinking of The Shack and longing for that refuge.

To put things in perspective, I look ahead to the coming week, no work for me, but three MRI's, a session with my coach and a session of B.E.S.T. therapy, New Year's Eve, New Year's Day, homework and back to life, back to living on purpose, back to working on my coaching business, back to my nursing job. back to......
I almost typed "back to normal".  Who am I kidding?  There is no "normal" anymore.  There is no "back to", from here on out-- this is uncharted territory.  An adventure of sorts.  So, I suppose that is how I'm going to look at 2015.

This new year, 2015, will be my year  of exploration, new experiences, new enterprise, new travels and my own brand of personal rebellion.  In 2015, I will muster all of my moxie and charge ahead into whatever is waiting. I will welcome those who want to charge ahead with me..and I will let go of the rest. One thing I have learned in the past two months is that we can't force others to share our journey.  The faint of heart will fall away. Very few stick with us for life and most people just don't have the stomach for dealing with reality or even the desire to know the difference.   Many people hide behind "I can't" when what they really mean is, "I won't".

What will 2015 hold for you?  What is your great desire? Your mission statement? Your word for the year? What tragedy did 2014 (or any other year) hold for you that needs to be dealt with, worked through, or grieved past? Are you living your purpose? Do you know your purpose?  Are you up to the challenge? Or down for the count?  And if you are up for the challenge...do you need help finding your true desires? Do you even have a word for the year?...A common theme to guide you day to day?  If you want to shake it up a bit, resurrect the parts of yourself that are buried under years of self-denial, up level your thinking and become the best version of you possible... reach out to me via email  (or just click the big orange button at the top right of the screen) to set up a 30 minute Discovery session to see how we can work together to make 2015 your best year ever!

Oh-by the way... This my word for the year- (Just saying it makes me feel better)--Let me help you find your word..it's the first step to finding the new you!

mox·ie

 noun \ˈmäk-sē\

: the ability to be active

: courage or determination

Full Definition of MOXIE

1

:  energy, pep

2

:  courage, determination

3

:  know-how

Are you ready to commit to a New You in 2015?  If so, click here to schedule an Intensive with me at my Introductory rates- Only good for January 2015!

Perspective

I bet you thought I would never post again...
Truth is..  I didn't think I would. I'm forcing myself to write this post.
Is there an update on my health status?  No, not so much.  
I did contact my neurosurgeon. He did order an MRI.  I did have it done.
I worked the day after my MRI, promising myself to overnight the cd to my neurosurgeon the next day.
That was weeks ago.  
That night, we were awakened in the middle of the night by a call that our college age daughter had been involved in a violent crime.  Actually, we were just called by our very calm daughter telling us she was with the police.  However, as the details became clear and I hopped on a plane to go to what I thought would be a one day visit down to meet with police...I realized (and am still realizing) the
magnitude of what has happened.
Every day gets a little bit easier and a little bit more difficult.
Every day I find a little more joy and a little more sadness.
At the same time, every day I am grateful to still have my precious daughter.

I am not including details, as they are not needed and it's better to keep some things vague for everyone's sake.

I'll just say the random thoughts that have crossed my mind.. I feel I need to say something.. I've had a few messages from the Chiari community asking if I am okay...and the answer is yes, I am.  I'm broken on the inside.. in at least a million pieces.  So, here is my rambling list of thoughts.....

I'm sorry.  I have let down a few of you, there were surgeries I was supposed to attend, support I wanted to and planned to give, cards I intended to mail.  I still have the intent, however, most days I feel all I can do is get to work and get through the day.  The weight of what has hit our family is so big, carrying it seems to be all I am able to manage.

I am stubborn.  I am stubborn and selfish.  I am not answering calls still, except for a select few people. I can't. I won't. I flat out refuse.  Usually when I talk, I cry..and I can't cry all the time.  I just can't.  I've drawn a line that I'm not allowing myself to cross.  My husband intercedes on my behalf where he can, besides that...my main focus is taking care of my daughter.  I'm being stubborn about it.  I'm sure you understand.

I am shocked.  I'm shocked at the petty people who will always hold grudges, meaningless grudges, at a time when people need to unite.  I'm shocked at the callous comments of people who are "in the know", who seem to poke around for details,  just for the sport of being able to have a juicy morsel to "share in love" with their church, their neighbor, or anyone who will listen.  Get over yourselves already.  There are so many more important things in life than holding a grudge, some misplaced sense of loyalty, or searching for some detail in order to have the most interesting prayer request at church.  This is the time to band together, to live what we preach and to for goodness sakes, have the decency to respond to messages or emails without feeling like you are somehow betraying some misplaced sense of loyalty.  Are we not of the same mind? Of the same heart? Of the same family?

I am saddened.   Of the things that have happened in my life...health battles, divorced parents, my own divorce, brain surgeries x 2, various abuses---I have never had anything just wipe me out like this.  Sleep escapes me, yet I'm so very tired.  I feel like I have to be on go all the time, ready at any moment should a dragon arise that I must slay.  My headaches, vision problems and vertigo do little but anger me.  I brush them away with the resolve of a warrior.  I have no time for Chiari right now. No time for neurosurgeons, neurologists or another surgery.  I only have time to press on to the next thing on the list and that action, that pressing on,  is the glue that holds all of my million of pieces together.

I am sublime.  Yes, sublime: meaning great or magnificent.  How could I not be?  I am a mother.  I don't mean I'm all, "Happy Happy Joy Joy"... I mean, my bond with my daughter is so great.. so big, so wonderful... I literally feel her pain, her joys, her fear.  How fortunate am I?  These times, these times that are so dreadful we cannot speak, but we can only look at each other with tear-filled eyes and know there is no need for words... these are the times that remind me how awe-inspiring being a mother really is.  When I make phone calls on her behalf and take up an offense for her, I am honored that I have this position -that she was entrusted to me.   I am so grateful to be her mom. So grateful that her brother loves her so very much.  So grateful to know that we all have each other.  So grateful for a husband that supports my decisions and loves my children.   So grateful for my precious daughter that even in the face of such pain shows such compassion, such grace, such resilience. How magnificent is that?

So, dear Chiari friends... I will ask for your understanding for my absence, but I'll not apologize for it.  I will update when I can, where I can, as I can.   Everything with my health is on hold for the foreseeable future.   If you are looking for support in Texas, namely the DFW area.. private message me and I'll see someone contacts you.

When you finish reading this, go hug someone you love a little tighter,  smile a little bigger, laugh a little longer.  Life is precious and family is a miraculous gift.  In light of all this, my big brain problem doesn't seem bad at all.  Perspective.

Pseudomeningocele Anyone?

Okay, so here it is.
I have written and rewritten this post.. trying to sound upbeat and positive..
Which I really am, but everything I write comes across flat and empty.
Here are the facts...and nothing but the facts!

I find myself just over six months post op... again. Surgery #2.  I am doing quite well, working more than ever (since surgery #1), both as a nurse and on our personal business.  I'm taking a year long class that I absolutely LOVE and I have so much travel planned that my calendar is having a hard time keeping up!

I just a have a little neurological fine tuning that is getting to be rather troublesome...and I have to make a decision pretty soon about calling my doctor.  When I say doctor- I mean neurosurgeon- the only doctor I dread calling.  Not because I don't love him or trust what he says-- but basically, because I know that any call to him can result in another trip to the operating room... and really, who wants to deal with that?

So, I'm open to opinions, advice, etc... post comments, private message me.. what ever-- and yes, this time --IF I go for a follow up, I am considering another opinion.  I hate to do that because I have internal shunts.. and Dr. Kim placed those.. they seem to be working fine, so I don't want to mess with them...so this is what's going on:

You may recall, a few months ago when I flew for the first time I had the area at the base of my skull sink in.. like abnormally sink in.   Like, I've been hit in the back of the head with a brick.  Yes, not attractive.  I called Dr. K then- his response: "This can be normal for the first 5-6 months"  Well, now I'm 6 months and 2 weeks post op.  Two weeks ago, while at a neurosurgery appointment with a friend, I was told by her neurosurgeon (when he examined my surgical site-at his own request) that this is happening because I have a pseudomeningocele there.  He also said if it doesn't resolve within the next few weeks I may want to get it checked out.   Sometimes these have to be surgically repaired.

 Per Wikipedia: 

A pseudomeningocele (soo doh mi nihn guh seal)  is an abnormal collection of cerebrospinal fluid (CSF) that communicates with the CSF space around the brain or spinal cord. In contrast to a meningocele, in which the fluid is surrounded and confined by dura mater, in a pseudomeningocele, the fluid has no surrounding membrane but is contained in a cavity within the soft tissues.

Pseudomeningocele may result after brain surgery, spine surgery, or brachial plexus avulsion injury.

Treatment for pseudomeningocele is conservative or may involve neurosurgical repair.

So, now I am at the point of ... do I get it checked now or wait?   Every time I fly (both neurosurgeons insist there is no reason for me to stop flying) a short trip.. either a two or three day turn around  with brief flying times... I end up in bed sick for a few days.. and it has been up to ten days.   I have lots of visual issues still.. unless I take a large dose of anti-seizure medication and I still have hearing loss.  I have a very painful (but not red or swollen) area at the base of my skull, the part that sinks in and puffs out when flying and typically get a very tender spot on the top left of my head, very sore, whenever I'm fatigued or at all under the weather.

So I guess.. I am just throwing this out there for any comments or suggestions.  I'm not asking for a new doctor or a referral.  I will visit my NS and another one in Houston if/when the time comes.

I did not post this in an open thread in a FB group because honestly-- those things get out of control-- but I would appreciate your feedback, experiences, etc.   Thank you!

Bob and I at CCWAA  Houston, TX  Sept. 2014

You may notice, I had a newsletter sign up form here, and now it has been removed. You are welcomed to message me if you would like to be added to my email list.  I removed the sign up because my website is being restructured. I made the decision to put this newsletter on hold. I will still send out updates, but I do not want to be tied to a newsletter commitment with the new things that have really shaken me to my core over the past few weeks.  I am so excited and am totally filled with joy and optimism with what the year ahead holds.  So, please, if you want to be in on the updates and be sent newsletters when they are ready to start on a regular basis, please, please send an email to me at info@michelecollum.com.  Thanks so much!

Today I am reading a book that I am assigned to read, not a book I picked up to read just because..I am reading a book by Napoleon Hill called Think And Grow Rich . The writings are profound- about every other line I stop to jot down a note in my journal.   However, the last line, I decided to share with you, my loves. I believe we all know how this feels:

          "You have been disappointed, you have undergone defeat...., you have felt the great
           heart within you crushed until it bled. Take courage, for these experiences have 
           tempered the spiritual metal of which you are made--they are assets of incomparable
           value. Remember, too, that all who succeed in life get off to a bad start, and pass through
           many heartbreaking struggles before they "arrive." The turning point in the lives of those 
           who succeed usually comes at a moment of some crisis, through which they are introduced 
           to their "other selves." 

I know how if feels to feel disappointed, defeated, afraid and in crisis. If you read back through my blog, you will find a roller coaster of emotion, of ups, downs, moans, groans and even laughter... I hope you take away hope and encouragement.  I hope you find your turning point.

What Would You Do?

At some point in my journey with these crazy brain things, I stopped feeling beautiful.  Not just physically beautiful, but beautiful on the inside, beautiful in my heart, in my spirit....
Do you feel this way? Do you feel as if you have become unattractive or defective?
Sister of my soul, you are not!
If you could choose one thing to accomplish with your beautiful life...what would it be?  Please comment below, your comments encourage others.  As for me... I am out today, running errands and making my life just a little more beautiful!  Have an Amazing, Limitless day!

Michele

Inspiration

Daily walking through this new neurological fantasyland is quite surreal.  Many times I stop and catch myself saying, "My neurosurgeon...." or "After my second brain surgery....".  I've even stopped and looked at my husband and said, "How unreal is that?" "Is this really our life?"
You know what? This really is our life now.  Our life does involve MRI's, opthalmology appointments, neurology appointments, dragging multiple meds on every outing (just in case) and ample planning for rest.  At any given moment, my day can change from great to grievous within a matter of minutes.  Happy to horrible.....Perfect to Painful...Fabulous to Frightening.  Literally, emotions turn on a dime and we have to be prepared for whatever comes our way.

Perhaps you, too, suffer with Chiari Malformation or you have an arachnoid cyst, or syringomyelia-or arachnoiditis.   Maybe you are the parent or spouse of a person with one of these disorders...or really any life altering disorder.  Has the strain of it all gotten to you?  Are you wearing thin with the doctor visits, decisions, misinformation, family members and friends that don't listen/care/understand/? Is the fight for validation, treatment, or just to simply be heard getting to you?  If this is you- I have been where you are.  I occasionally go back to where you are.  I want you to know that you are not alone. I know you feel alone-but you are NOT alone. No matter where you are...you have landed on the right page, the right blog..and you are welcome here.

I am very aware there are fabulous foundations out there. ASAP, Conquer Chiari, ICA, CSF. ACYST.ORG, Column of Hope.  These foundations are digging in and doing research and promoting awareness.  I serve as a chapter leader for one organization, am on the Board of Directors for another and am participating in a walk with yet another.  What I don't see..across the board..is a great deal of personal advocacy.  Encouragement on a personal level.   So, That's what I have to offer you today.
A place to call home.  A place to share triumphs and struggles.  A place to thrive regardless of the obstacles we all face. A place where we all have a voice.

Some of you may know my personal story, which I will only briefly summarize here, about how I suffered poor health for many years.  I was in a marriage for almost twenty years where my health was a big issue.  I was belittled because the doctors never diagnosed me.  I knew there was something wrong, but I had no voice.  My voice was quieted with harsh words, name calling and emotional abuse. My life was under much constraint. It was as if I were some second class citizen unworthy of love because of my health.  I eventually left that relationship and after a lot of therapy met a wonderful man and found a precious love..just in time to be diagnosed with Chiari...a constricted cranium... (more constraint). As a result, the past few years of my life have been a struggle of diagnosis, surgery,  recovery, financial loss, career change/loss, more surgery, more recovery...but it has also been unbelievable.   Under the most physical duress of my life I have: gotten married, traveled to Paris (twice), traveled to London, taken flying lessons, sold my house, moved to Dallas, TX, flown with friends in a private plane to New Orleans for the weekend, flown commercially to: Seattle, WA, Houston, TX, Orlando, FL, Tampa, FL, Dayton,  OH, Lexington, KY, New Orleans, LA, San Antonio, TX, Savannah, GA, Gainesville, FL, Washington, D.C., Memphis, TN, Austin, TX-- I've started my own business, been featured in Woman's Day magazine, Helped start a support group and am currently organizing my own fundraiser (details to follow soon!)  I am LIVING!

My Daughter and I in Paris last week.

Now this isn't a "Yay Me" post.  This is a .."YES YOU CAN!!" post.  I was in Paris this past week.  As I walked along the streets of Paris...I saw a gorgeous pair of shoes-- heels.  I haven't dared to wear heels (except wedges for less than an hour here and there) in quite a while.  I always say in my head "you can't wear those, you will get dizzy and fall over" -somehow, in that instant I realized I was buying into an "I can't" mindset.  I was setting limits on myself that didn't even really exist. Granted, there are things we can't or shouldn't do (roller coasters, trampolines)... but some things we self limit ourselves with because of fear.  I realized I was living in the old fear and constraint of years before.  I had somehow started hearing the old voice in my head-and believing it. I had been treating myself like I deserved less from life because I am damaged goods.  I made a vow right there on St. Germain du Pres to stop and to take my life back. Immediately, I was overcome with this desire, this passion.. this urgency to come back home and encourage you, to advocate for you, to join you in your fight where you are...however you are.  So that being said...Whether you are new to this blog, or a long time visitor...get ready..because things are about to change!  A new website is in the works that will link to this one and a weekly newsletter will begin September 1, 2014.  Please enter your info in the box in the upper right corner to be added to the newsletter email list.  Also, I will be sending out other Freebies as I get this up and going such as: Symptoms checklists, info lists to help you when talking with your doctor, homeopathic and essential oil helpful tips, exercises we can do (yes, there are some we can do).  Also, for those of you with writing flair and vast knowledge, I'll be looking for guest bloggers to feature.. this isn't a me thing.. this is about all of us...our lives and how we choose to write our stories.  We are only limited by the limits we put upon ourselves!

Why Are We, Chiari? (I Wanna Get Better...)

 

                Let me preface this post by saying a few things about the author of the post below.  Taren Thomas came into my life  a few months ago, just as I was having my second surgery and she was just days away from her first.  She is one of the most precious, strong and encouraging people I've met through this crazy beast we call Chiari.  She has been a blessing in so many ways.  Yesterday, our support group met and I was able to spend a few minutes with her- which is always a treat. I am honored that she shared her writing with me and that I am able to post it here on my blog.  On the way home from that meeting, a meeting where we all feel normal for awhile when surrounded by those in our tribe..then we head back to our lives..the real lives we live every day with the rest of the world.  Taren and I both tackled driving again yesterday...and survived..  So on the way home, I put the top down for a very brief time, and this song came on...so I turned it up and let it blare.  (this song is not about suicide btw.. it's about being alive.. and BETTER...and for me, how hanging out with Taren, and Alicen and Aimee yesterday actually took me back to that place of not knowing how lonely a part of me was for a tender hug from an understanding person... the look in the eyes of those who have undergone the knife to the back of the head..and live out loud in spite of it).  So.. as you read Taren's most excellent thoughts below.. turn up your speakers and let it blast out...  I WANNA GET BETTER BETTER BETTER!!!  Not just physically..  in all aspects... We all should want this every single day, no matter our circumstance! ---Enjoy!   Michele

                         

Why Are We, Chiari?

I wake up most mornings just like everyone else, except when I glance to my right where my night stand holds my clock, I see it is only 5am? “What?” my mind races again, “Seriously? I only slept four hours. Uggh!!!” It makes me want to scream, but to what end? That would only make the devil playing my with brain come to beat the drums.

So then I lay there focusing. “Does my head hurt?” This sounds like an easy question, simple enough in fact right? WRONG! You see I have not sat up yet, this thought is crippling because I know once I propel myself into an upright position I have given away all my defenses. I cannot simply just lie back down and receive instantaneous relief. I mean that would be glorious, but even if I could who wants to live on their back all day?

 Well, unless perhaps you are a Victoria Secret’s bathing suit super model being paid millions to gingerly roll around in the sand with your long legs extended, but let us get back to my reality. That is not in my future.  

Okay so where was I?  5 am right? So I begin thinking I might as well get up and start bracing myself for the day. I have two small, noisy, energy-filled-to-the-brim children, who I will have to take care of, so let this momma face this day head on. So I do just this. I clamber out of bed, taking great care to ensure that I can actually trust the legs I call my own. Some of the times they have the very own mind controlled by the devil who lives in my brain. At these times, they do not want to walk with me or even worse that they want to have sharp tingly pain throughout them. AWESOME!! 

I make it to the bathroom and shower. RELIEF! It is truly one of my joys in this lifetime. If I were a billionaire I would want to help people all over the world get running water, of course for clean water, but also for a nice warm shower. Oh relaxation!  Taren.. just don’t forget to watch… Damn ruined it! You see- I put my head in the water before cooling it down, rookie mistake at this point really, no one else to blame. Ever since my decompression surgery hot water on my scalp feels like being doused with gasoline, since my decompression in 2014. It was followed shortly after with another surgery for a staph infection.  I mean with those odds I should play the lottery!! Now that is an excellent way to ensure that you are definitely awake before waking your children, feeding your pets, making their lunches, and getting them to school all with a smile on your face, of course! 

Now do not get me wrong, I do not take this life God gave me for granted or any part of it. I actually believe I am quite lucky to be here. You see I am a rarity in this society of Chiarians and have been blessed to find such loving people who have opened their hearts to me. Unlike the majority of people with Chiari, who are born with it, I acquired it at age 25 from a series of complications following meningitis. One of which was a significant spinal leak. I should have died then, but I am still here. I was told after my decompression before they operated to remove staph that I should have not made it, but yet here I sit. So I am truly blessed. Weird legs, no sleep, bad vision, still almost constant headaches, burning scalp, and I am happy. 

Now I just need to figure out what to do with my life. I am sure there are many out there with that same question. Can I go back to work? It does not seem like it. I am constantly exhausted with no sleep and a headache at every turn and that is without going to work 9 to 5. 

Then, what is my value? Sure I have value as a wife and a mother, but I want more value than that. As I am sure at least some of you have felt at some point in your Chiari journey.

Why are we, Chiari? I can honestly say I have no answer this question. I can say that I know we are the ones, who by no choosing of our own are strong,  enough to bear this burden. Whether we do it with the help of our family or support groups - we do it. None of us should ever discount that. Do not ever forget that you too are strong and have survived something, are surviving something, weaker people could not. So hold your head up high and do not give up. 

I do not know about everyone, but I find myself saying at least it is not cancer, boy am I lucky. You know though at least doctors take cancer seriously, especially if it is in a child. I am blessed this was acquired for me. I cannot begin to imagine what the parents of small Chiarians go through to get heard. It took me four years and four neurologists. To me this has to stop! Maybe it is not a death sentence for all, but having Chiari is having a life sentence. For most of us this is not a life any of us would chose for ourselves or our worst enemies. Surely more can be done. For now I will be happy. I am here to vent. I will be happy that I have met some of the most amazing, strong, enduring people on this Earth. I will say I am blessed to have a family that loves me and takes me for who I am, even if that is limited now. I will end by saying thank you to Michele Robinson Collum for finding me and guiding through this crazy labyrinth that is known as Chiari. 

By Taren Thomas

Thank you Taren!... You ROCK!!!

Taren and I yesterday at DFW ASAP Support Group Meeting 8/2/2014

"Well, Bless Your Heart" (Uber post)

Last night, I had a lengthy visit to a neurological ophthalmologist, Dr. McHenry in Dallas.
Due to the appointment timing and my eyes being dilated--I had to call on Uber to pick me up and transport me home. (YAY- LOVE UBER!!- Get your own Uber account using my promo code for a FREE  first ride: michelec79 at www.uber.com- or use the app store)
Anyway, my Uber driver, Scott, was awesome.  He picked me up within 5 minutes of me ordering a car and whisked me home.  Making small talk, he asked about the doctors office being open so late.  I dropped the brain surgery bomb.  I am fascinated with the different reactions I get from strangers.  Sometimes I get a blank stare. Other times a gasp. Last night, "Oh you poor thing!"
Really?  "You poor thing?"
Now, Scott was a wonderful guy, a great driver and for goodness sakes, he's from Tennessee (so he really knows how to talk .."whiiiiite, briiiight, niiiight, liiiight"- Which honestly is music to my ears--I get a little homesick from time to time (except for the life of me, I can't determine where home really is?).

SO anyway, amid the Dallas traffic and the droning voice of the navigation system, I educated good ol' boy Scott on Chiari Malformation Type 1, Arachnoid Cysts, Ehlers-Danlos Syndrome, Craniotomies, Posterior Fossa Decompressions- the differences in neurologists, neurosurgeons, opticians, ophthalmologists and neurological ophthalmologists.   I daresay- this, Scott's first night driving for Uber...will be his most educational one. AND- possibly his most opinionated one.

See after Scott declared me a "poor thing", he also blessed my heart.   It had to stop there.  I refuse to be victimized or pitied. Now seriously, do I seem like the kind of girl that wants pity?   Granted, I believe a certain amount of respect is due to any person that faces life's challenges head on and continues to daily rally and do it again...but pity is where he was headed..and where he was promptly stopped in his tracks.

Starving, shoeless orphans in Cambodia---they can be pitied.  Chiari Warriors - we are to be revered, applauded and hailed as the victors of our daily battles. Arachnoid cyst/arachnoiditis patients--no pity required.... We just wake up and do it again and again and again.  We know what works for us, we know what doesn't.  We know when to crawl in bed, we know when to push ahead.  Fighters for normality of life...Life is to be lived, not merely survived.

Survival of the fittest?  Not this chick- Living Life Carte Blanche--Why not?   Why the heck not?

Please know--this little pep rally comes on the heels of me being in bed for over a week...no kidding- over a week!  I flew to Orlando over a week ago- then I flew home.  I had multiple plane changes on the long route home and my head couldn't keep up with the altitude changes.  So my ears didn't finally completely clear until about two hours ago.  So that was- 10 days of stasis of fluids in my head--- which led to sore throat, cough, fever, headache, fatigue, eustachian tube dysfunction, laryngitis, and bronchitis. I still feel like I'm swallowing razor blades and I sound horrible.  I've slept more than I've been awake and every cough is like someone hitting me in the head with a hammer.  - However-- I went to work at my RN job two days, attended my grandson's birthday party, strolled the Bishop Arts District of Dallas for a few hours with my mom and managed to make 10-20 calls each day for our home business (left lots of voice mails that may or may not be understood by the recipients).  I don't say this to brag...or to dishonor those that are in worse physical condition than myself.   I say it to really set the scene for what life is like for some of us..and how we keep living normal lives regardless.

Now, I know, Scott-the Uber driver, meant no harm.  I did not chop his legs off and put him in his place.  But- I did kindly and gently lead him down a path to understanding my weird brain thing and I  told him-without telling him- I am no victim.   We all have a choice in how we handle our physical deficits.  My choice is to live well in spite of mine  I hope you will choose the same.

BTW:  If you sign up for Uber, use my code to get a FREE ride: michelec79

Thoughts That Appear In the Middle of the Night

In addition to my efforts to raise awareness and education in the medical community, I seek to encourage and empower others. My passion is to offer the needed extra hand of help and a shoulder of encouragement. 

Lately, I have had many sleepless nights. Many moments of praying, "God..How will you use me? How will you use this in my life?  What can You reveal in my life that shows Your hand in all of this?" 

I'm not having a faith crisis.

My faith is steadfast. 

The lens through which I view the world has been altered. 

My questions come from what I now see through this new lens. 

Skewed and distorted images have become frighteningly clear.

I do not like what I see. 

I see men and women raw with the emotion of their illness lashing out at others. 

Bullies have arisen in our small communities of hope. 

Prejudice actually exists due to number of surgeries, presence of syrinx, symptomology, ability to work, decisions about having children, even minor grammatical errors. 

Communities of hope become necrotic at their core. 

Clarity of sight is not a gift. 

Many live in situations with supposed loved ones who daily berate and belittle due to their lack of understanding. 

Intolerable cruelties are spewed forth and the sting of harsh words fall on precious shoulders and stick, never to be scrubbed off. 

Financial ruin lurks at every turn. Every moment filled with the "what-if's" of life. 

Fear of failing health and lack of resources nag at the silent places in souls. 

Taking steps to secure our financial futures is criticized by those who are just like us. 

As if they don't have the same fears. 

Or maybe the problem is that they have given up and are jealous of our ability to rally  and continue to fight and press forward. 

Relationships change. 

Friends disappear.

Families disengage.

We become less lovely to be around. 

We know this is not the game of life.

This IS life.

We do not take it for granted.

We may go into our cave of quiet and dark out of necessity-

and blessed is the friend or relation that  ventures into that cave with us.

The cave need not be massive.

Only a few will enter.

We cry alone in the night. 

We cry out loud at the injustice of it all. 

We cry silently for what has been lost-for what never was- and what will never be again.

How is it that we never saw this clearly before?

For myself, I have a running mental list of people who need their lenses cleaned.

Surely they just do not see clearly.

For if they did, their actions would be more carefully chosen.

Words would contain less venom. 

Shallow, petty complaints would subside. 

Life would be grasped full force. 

Amends would be made. 

Excuses would no longer be offered for bad behavior.

Excuses are but empty boxes

meant to fill in the vacancies left by hurt, failure, dishonesty. 

They are a poor substitute for what is really needed. 

Truth. 

I have two life threatening neurological disorders that affect every moment of my life.

Every moment.

I refuse to go quietly and humbly into  a place of defeat.

I refuse to accept ill-treatment from others. 

I refuse and reject many things these days. 

I boast to stand strong and proud. 

Then in the next instant- I'm alone again crying in the shower or hiding in the bathroom texting the only two people in the world that care enough to live every moment of this with me. 

The only people that can handle the truth.

The ones I don't have to muster up a smile for and say, "I'm fine". 

I realize how clear my lens of life really is. 

And how all of this clarity still offers no real answers - yet urges me forward . 

I realize what a contradiction of emotions I am and I despise myself for it. 

I ache. 

My head aches. 

I reach up to touch it and feel the new deformity there. 

A tear rolls down my cheek. 

Anne Lamott's quote comes to mind, "My heart was broken and my head was just barely inhabitable."

I pick up my laptop in the middle of the night and I write. 

I write for no one in particular, yet for everyone.

I write for myself. 

I write because the blank page makes no judgements, has no expectations and has never let me down.

I write and once again- I am free. 

I am so sad and heartbroken I can't even write about it. I have no words.

Independence Day

As I scroll through my Facebook, I see flags and Thank-you's to our military. 

I see families cooking out and enjoying the day together. 

I see lots of water. 

Tonight, I expect there will be lots of fireworks. 

I'm home today. My husband is working. 

I've spent the day in silence.

A couple of phone calls to update on a sick family member, one brief business call, but mostly--silence. 

I like silence. 

There was a time when I didn't like silence.

Silence meant I was alone, with myself, with that tape that plays in my head. 

The tape was detrimental for the majority of my life. 

Some of it's greatest hits were, "you aren't good enough" "you are worthless" "you are a financial burden" "you don't deserve love" "there is nothing wrong with you-your illness is all in your head" "you are lazy" "you have a head full of useless knowledge'...

The majority of these were placed in my head by my former spouse. 

Words hurt, they maim, they cripple. 

They are not biodegradable.

Words are styrofoam.

They last forever. 

Now, after a few years of healing emotional wounds, learning to love and trust again and being diagnosed with two neurological disorders (and the diagnoses that come with them)--

I've learned to welcome the silence. 

As much as Chiari Malformation and Arachnoid Cysts have impacted my life in negative ways, they have also been very positive. 

I've written a few times about the incredible people I've met as I walk this path. 

But I don't think I've ever written about how the validation has healed part of me that I didn't realize was broken. 

Being chastised for years for the many physical ailments that came my way caused great damage to my self-esteem. 

I knew I was not exaggerating things or making them up.

I knew the doctors were missing something.

I just knew it. 

Validation came when my diagnosis led me to research symptoms. 

That's when I found out I am not lazy, there was something wrong with me all along, I was not a hypochondriac, any of 28 different doctors could have diagnosed me if they had not dismissed me.

The worthless, financial burden, undeserving part...well, I guess that depends on someone else's opinion of me.

Certainly not my opinion of myself. 

I have always known my Father is a King. He said I am fearfully and wonderfully made, so how is it possible for His creation to be worthless?  

So, for me- Validation = Independence. 

I have been set free of the old mindset, of the old tape playing in my head. 

Some days, I hear the volume of the old tape increasing. Usually, this is because a headache has zapped my defenses and I can't wrestle the volume switch back down. 

However, most days are victorious. 

Most days I'm waving the flag of Independence. 

Most days I am overjoyed with my life and my happiness. 

Most days.  

This past week I had the pleasure of hanging out with a sweet young girl. 

I fear she may be in bondage to a bad tape.
I made a new friend-in bondage to a bad husband and my same neurological disorders.
I fear she may not have the strength to withstand both.

I want to set these people  free. 

I want to validate their lives. 

Everyone should live free. 

Everyone should be comfortable with silence. 

Today-on this Independence Day-

Listen to that tape in your head. 

We all have one. 

If it is lying to you..

Declare your Independence. 

You are not defined by your illness.

You are not defined by someone else's opinion of you. 

You are not defined by your financial status, the balance of your medical bills, your dress size, marital status  or your ethnicity. 

Do whatever it takes to validate your existence, 

recognize you are the son/daughter of a King. 

Hold your head high (even if it hurts) and declare today your Independence Day. 

At FL 330 Without A QRH: My First Flying Adventure After Brain Surgery

You may ask yourself..."Self, What the heck is she talking about? Isn't there enough acronyms in my world without adding another? Already I have the learn NS, NL CM1, EDS, AC, POTS, IIH, CCI...and here we go again! 

Stay with me..I will explain.

Remember, I aspire to be a pilot...one day..one shining day, I will solo.
I plan to pick my lessons up again as soon as the air begins to chill here in Texas...
Then watch out!

In the meantime, my adventures in aviation are limited to those that require me to fasten my seatbelt and stow my electronics at take off.
However, I feel I take that to the next level. I feel I fly more frequently than most. I've gone from being an occasional flier  to a virtual globetrotter.
I love it and I refuse to be limited by a little pain.

That being said, I thought I would share my first adventure in flying after my second surgery.
Again, as passenger, not pilot.

So, we board the plane.
Already, we are in a state of fatigue.  Due to rain we were bumped and re-routed to another airport.
We were assigned seats in First Class...by this time it's 11 p.m. and we've been at the airport since 1 p.m.  Our flight is to take two hours.

I settle in the leather seats of the AirBus A319.  As the other passengers board, a wave of panic hits me.  In all of the packing, prepping and planning for the trip, the fact that this was my first flight since surgery had not crossed my mind.  I grab for my bag of "just in case" meds and pop a Flexeril,  three Valium (6 mg total NOT 15 mg) and four Ibuprofen (800 mg).  I mentally berate myself for not bringing my travel pillow.  Open the blanket and prepare for the worst.
I mean.
I have flown post op before..but NOT with shunts.
My mind is a flurry of "what if's "--"What if they clog? What if they move? Can they move? What if the pain is so severe I can't take it and I can't get out of this plane? What if I have a seizure? What if....?"

You will be glad to know that I think I dodged all of the "What If" scenarios that came to mind.
So what happened?
Something I totally did not expect. Something I did not find in the QRH, something no one warned me about...but given the fact that I'm very verbal with my physicians that I fly frequently, perhaps they could've mentioned and avoided a panic.
First, my ears got stuffy...normal occurrence when flying.
Swallowing didn't correct it..so I just went with it.
My head began to ache..not terribly.
My muscles spasmed in my neck and shoulders..not a new thing for me.
Then..my skull caved in.
I mean it sunk in.
Or medically, a large indention appeared at the base of the skull at the site of the craniotomy defect and cranioplasty.
It was freaky.  I felt as if I instantly looked like E.T. with his misshapen head.

See that indention on the back? -Just call me E.T.! 

I kept this too myself..not wanting to be a whiner. 

We landed, found a hotel..I took a real pain pill..we slept. 

Next morning, we are out the door to grab a rental car and make our way to our target destination. 

The headache builds.

And builds.

And builds. 

The spot sinks, and sinks and sinks. 

We finally get to Bob's sister's home. One sister is a nurse. I ask her to check out my creepiness. 

She sort of gasps. 

Yay.  That's reassuring! 

She gets my husband to look to see if it's normal. 

The verdict.."NO!" "Not Normal!" 

Headache is continually building. 

I'm chugging water and start medicating. 

Laying down..while everyone else visits downstairs. (I despise this feeling- like I don't get to be a part of the fun club--and they all whisper about me..you know, "She looks good"-- or "She looks really bad" Or "I'm really worried about her." 

So I call the doctor.  Of course he's in surgery. (I guess that's what neurosurgeons do). 

I am told to hydrate and rest...and of course..go to the ER if I feel it's necessary. 

This furthers the worry in the house. I stay upstairs as long as I can..and finally make my way down to the living.  Whispering subsides but concerned looks remain.  "I'm fine!" I blurt out. "I do this EVERY day...it's new to you..not to us." 

I supposed the agitation in my voice rocked everyone back into their normal state of being and we focused on the task at hand: eating dinner. Sometime during dinner, as I swallow, my ears finally clear..about 15 hours after the flight.

At long last, when the nurse finally calls back - I am able to scribble a note in my own personal QRH, 

"Swelling and depression at surgical site with changes in altitude can be perfectly normal, especially for the first six months after surgery." 

So- the rest of the story is that I flew three more times, so a total of 4 flights in 7 days. Each time I had the swelling and sinking, but no more headache.  

I guess my body got the message I silently sent it as I laid in bed with a headache the first day, 

"You will NOT beat me. I will NOT stay home. I will NOT hide--You do NOT win!"

So yes, I found my self at FLT 330 (on an airplane at 33,000 feet) without a QRH (Quick Reference Handbook)--but I did what most pilots, nurses, moms, dads and Chiari, Arachnoid Cyst and really all neurological patients do. I made the best choice I could at the time, with the resources and information available.  

Life comes with no instruction manual. 

Just live it and roll with the changes. 

In The Zone

Many times I  have a "bad" day and I shake it off. 

I'm one of those people that will audibly say, "Shake it off" and shake my shoulders, then set my mind on something else. 

Today, there is no ability to verbalize or physically shake.

Today, I seriously feel like this is a top day in a never ending pile of similar days. 

You know what I'm talking about.

When every single day is filled with, "I'm sorry". 

Not that others are sorry for their less than stellar actions-

But when you spend your time apologizing for your headache, your nausea, your fatigue.

You feel like you are the common thread of misery in the lives of your loved ones.

They all say it's okay, but you innately know it isn't. 

You're friends say they are sorry you feel like you do..

But you don't even want to hear it. 

You just want them to shut up and quit being so freaking nice. 

OR 

You are angered because they can't be sorry if they don't even know or understand what is going on. 

Some people try to sum it up by saying, "I'm sorry you feel bad". 

I DON'T FEEL BAD! 

I AM A PERSON THAT FEELS GOOD INSIDE A DEFECTIVE BODY!!!

Of course, the shouting only exists inside my head. 

Shouting would make my head ache worse. 

So I mumble or moan something pacifying and go back into my zone.

The SERIOUSLY! Zone

Only a few people get to come into this zone with me.

I'm thinking of printing membership cards. 

-Which is genius on my part!

Then, when someone asks how I am..and I know they are asking to be nice and really don't care..

I can say, "Can I see your membership card?"

If they can't present one in person or text me a photo..

They don't get in- and I don't even have to respond!

I am sure you are sitting there marveling at my genius..

OR you are sitting there thinking, "Not only do I not have a membership card, I don't want one!"

And you know what...that is fine by me. 

Very few people want to really walk the path of life with another person. 

Some want to visit  at convenient parts, but few want to get on the path and stay on the path. 

I mean seriously. 

Seriously! 

                      

       Some people ask why I watch this show when I'm sad....

Why not? 

(You people...you don't get a card either!)

Today, I was forced into a curb, popped a tire and spent all day at the car dealership getting a new one.  Apparently, the Germans made sure no one else in Dallas carried my tires.

As I sat the the plush waiting room of Park Place Mercedes (which offered me computer access, but no iPhone charger..However-If I had a Samsung..I would be taken care of..seriously?), 

my phone died..

and my adrenaline died down. 

I've been extremely uncomfortable ever since..and there is no time for pain. 

No time. 

I have work to do, I have to go to work and I have a plane to catch. 

Except for my night was spent, not preparing for these things, but in bed, with an icepack, taking Zofran like they are Skittles and slowly taking pain medications like I'm counting them with an abacus. 

I slide two Ibuprofen and a Flexeril to one side...then swallow.

Two hours later... I slide over a Fioricet with an additional Tylenol...then swallow.

Then because of the caffeine, I'm wide awake..so thirty minutes later...I slide over two Valium (don't get crazy..only 4 mg total)and a Tramadol....and swallow. 

I add another Protandim..for no reason other than I figure my cells could use the help. 

Swallow. 

Third day in a row for prescription pain medications.  I went five days in a row with none prior to this. 

Two steps forward three steps back. 

I remind myself of all the things I have to be grateful for...so along with the pain, I get to endure a hefty dose of guilt for being such a loser. 

My Facebook app tells me I've got twenty-eight notifications. 

Which means twenty-eight people that care enough to be a FB friend. 

But not enough to be a real one.

I text the few remaining people in my life that have walked this path and stick around for more. 

(and I love you guys like you would not believe)

There's not much room left in my heart for the faint of heart, or the fair weather friends. 

I want to see the membership card.

This is my life today. As, my husband sleeps, I stare at the wall. 

Should I have gone to the emergency room?  Who has time for that? 

Tears roll down my cheeks. 

I'm in the zone.

Yes, tomorrow will be better.

But it's not tomorrow now. 

Seriously?!

Yesterday...I was The Bug!

                      

Anyone remember this song from a few years back?
(I tried to get the ad out of the link...couldn't make it work..sorry!)
I had an extraordinarily awful afternoon yesterday.
Well, I guess it started the night before.
I was scheduled to work, so didn't take my usual muscle relaxer at bedtime. I have an innate fear of sleeping through my alarm and missing work.
So about an hour and a half into my night's slumber--someone pulled my hair.
I mean, they pulled my hair hard. It woke me up with a jolt.  "Stop it!" I screeched, then turned over to see Bob sleeping soundly, gently snoring even.
"Weird", I thought-then I turned back over.
The invisible hair puller kept it up all night and most of the day yesterday.
Even with ice pack applied and my hand applying pressure, the sensation was still present.
So, I got literally no sleep, could not take pain meds and had to be at work at 0730.
So off I go to work running on empty.
Before leaving, a quick glance outside encouraged me to try to find a raincoat and an umbrella.
For those of you late to the party, we just moved.
Neither were to be located.
I pulled on the chic little hat of mine and sped off to work.
Three minutes later as I pull into the paid parking lot behind my building (with no umbrella or raincoat, I was NOT walking five blocks from our designated parking garage just so my parking would be free).
I walk in the building and get to work.

Here is where I hit the windshield.
Late in the day I'm informed that some of my hours must be cut.
I'm optional staff-so that's not a big deal.
Then, I'm led to believe that another nurse has a problem working with me because of my "brain thing".
I'm being gentle and evasive in my description of this--as I don't know who might find this blog and take it personally.
So, let me just say, it's the first time since this whole ordeal started (about 2 years ago) that I felt -maybe not discriminated against..but-well-- SPECIAL.
You know, like a person with leprosy may feel, or someone with a blatantly obvious facial deformity.
I felt ugly, undesirable and sort of unemployable.
By the time I made it home, in the still rainy weather...I was a wreck.
That three minutes home was enough time to review all of my life's failures,
all of my physical defects and I made the decision that I
am a total loser at life.
I walked in, blurted this all out to my husband in a tearful, rambling way that made him look at me  with this look that said, "I don't know what to say, so I'm not saying a word."
When he finally did say something, it was an update on someone very dear to him that had a grueling, superhuman twelve hour long surgery yesterday..a surgery that he entered with only a 50% survival rate. That was the final straw.
Not only was I defective, undesirable, possibly unemployable, but I was a self-centered, selfish shrew as well.
Here, this young man is undergoing this tragic surgery...and I'm crying because some kid on the playground doesn't want to play with me.
I excuse myself, go in the bathroom, lock the door, turn on the shower, sit on the floor and wail out my anguish.
I text Katrina...ALWAYS a good idea.
If I hate something...she hates it too-and with a vengeance!
I love friends like her.
About seven days ago, she was in the bathroom crying texting me-
So believe me-- she understands.
I'm not given those rainbow and butterfly responses from her.
There is no:
"Put on a happy face"
or
"Be happy-or fake it 'til you make it"
or
"When God closes a window, He opens a door."
or
"You should be grateful, it could be so much worse."

She gets down and dirty and takes up an offense like nobody I've ever known.
Then, when the rant dies down..
She says, "But this is our life...."
This is how it's gonna be.
We think it's going to one day magically be better, but it isn't.
So..with that reality.
I
CRIED
HARDER!

I realize what you must be thinking-
I mean, I have this blog, so I must be above all of this petty whining.
Actually, I have this blog because of this petty whining.
If I didn't get to get these words out of my head, I would not be able to face a new day.

Usually, I make peace with and accept my place in this world.
I can turn this into something good and reach out to others.
I just can't do it every day.
I can't help but image life without this diagnosis.
I would've finished grad school by now.
I'd be an FNP somewhere.
Life would be different.
I would still feel smart.
I would still function with the rest of society.
I would be the old me.

But, today I ask..would it be better?
I don't have a good answer.
I'm glad to have met the amazing people I've met over the past two years.
I'm honored to be able to mentor a few people and hold their hands through surgery.j
I am moved by the strengths I've seen in myself and others.
and at the same time,
I'm so brokenhearted to be such a burden on my husband and my family.
I'm mad at myself for taking a leave of absence from school, I've never started a class I didn't finish.
I resent my body for not complying and doing its job!!
and I'm afraid of what the future holds.

So..I'll say most definitely, yesterday..I was the bug.
Today is still in the works so I'm not quite certain how it will play out.
However, I am quite grateful to still be playing.