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!