My Personal Journey with Chiari Malformation Type 1, Arachnoid Cyst, Ehlers-Danlos Syndrome, Mast Cell Activation Syndrome, Hashimoto's Disease, Craniocervical Instability and Atlanto-Axial Instability.
Guess what happened to me last night...
Wait- Let me rephrase that-- Guess what occurred.
I'm trying really hard to not take a victim mindset on things. Nothing really just "happens" to me anymore. My reaction determines my mindset.. my intention helps set the path before me..
So let me frame my day.. I had an eyelash appointment at 9 a.m. I left home a few minutes late- only to get to the lash studio and find it had been broken in to.. so because of the broken glass--its FREEZING--- Yessinia, the lash guru, finds some blankets and I snuggle in for a relaxing hour of eyelash magic.. when BAM!!--
The table/bed/thing I'm laying on collapses.
COLLAPSES!!!
I, of course, hit the floor. I try to catch myself.. which leads to instant muscle spasms in my neck.
My first thought, "oh great, we have New Year's Eve plans-- I'll never be able to go out tonight!!!"
My second thought, "I was supposed to wear a hat to this Mad Hatter NYE party-- no way a hat is going on this head tonight."
My third thought, "With an attitude like mine...I'm doomed. Stop it, change it, set the intention..and so it is."
And so it was! As I laid there for the hour getting my lashes all glam- I prayed and visualized. I repeated to myself.. I am healthy, nothing hurts, I am prosperous, I am capable. I am free of pain. All of the cells in my body are healthy and I WILL go ahead with my plans tonight.
And so it was! I have to share this... Not only did I go to the party.. I stayed until after midnight (quite a feat at my age), wore my hat and even danced... YES-- you read right.. this girl right here, the one that has trouble sitting for an hour without resting her head on something.. danced...--- to Salt N Pepa ...yep.. Now I know if you are visualizing that you are probably laughing.. (and let me say, I remember when this song came out and it was risqué ...now.. the video seems almost laughable and Salt & Pepa are pretty modestly dressed--I thought I'd post it just for kicks)
The thing is... I was laughing, wearing a little pill box hat, wedge booties, dancing with my best friend and husband...I felt NORMAL!
I felt as though I had really turned a corner... all I've been learning in my transformational coaching training about positive thought, conscious language, wealth consciousness.. all of it clicked into place-- and for the first time in a long time-- my body didn't dictate my day.
Now, I know you are thinking that's not such a big deal... because I do stay fairly active and work a couple of jobs.. but guess I'm so wowed because I truly grasped what a miraculous event has taken place. I have been transformed literally by changing my thoughts and intentions. I stopped wanting to get better and decided to be better. Yes, my vision is still a wreck and my left foot--still numb.. and only three days ago I had three MRIs.. and I'm currently battling a pressure headache. I guess my point is that it isn't ruling my world. The health issue that took center stage for the past two years is no longer in charge. Life is meant to be lived, not merely survived!
So what happened to me last night? What occurred? Nothing miraculous to many people.. but for me...I lived without reserve, danced, laughed. I felt lighter, I felt happy, I felt victorious.
So let this be encouragement for you if you are not feeling well today, if you (like myself) sometimes have felt trapped in your body, if you just need someone to say.. "Don't give up.." I'm saying it to you. Nights like last night are to be treasured. ( I would love it if you would share some of your positive experiences in the comments section. )
Also.. to the right of this post you will now see a button you can click if you'd like to schedule a time to speak with me. I am launching my transformational coaching business this month and would love to schedule a time for us to talk and see if we are the right fit to work together. I am currently scheduling complimentary discovery sessions...so claim your spot!
Thank you for reading for the past two years...for being on this journey with me through diagnosis, surgery, a wedding, flying lessons, another surgery...loss, sadness, anger, joy--Every time I post I get encouraging feedback and that feedback has been the catalyst of change in my life. So thank you for reading.. and HOLD ON an INCREDIBLE 2015! I plan for this positivity, this thirst for life and laughter to be my #newnormal!
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!
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.
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.
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
Tuesday, September 9, 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!
Wednesday, September 3, 2014
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.
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!
