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