tag:blogger.com,1999:blog-34196565539288631942024-02-06T22:02:38.341-08:00My Constricted Cranium: A Chiari TaleMy 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. Michele Collumhttp://www.blogger.com/profile/00640668111778263055noreply@blogger.comBlogger139125tag:blogger.com,1999:blog-3419656553928863194.post-2126286430477872502019-10-05T10:54:00.002-07:002019-10-05T10:54:51.334-07:00Countdown to Surgery #3- Nineteen Days to go"I don't even know how you begin to plan for something like that..." <br />
As soon as my co-worker said it, I felt hollow inside. I half smiled and shrugged my shoulders, shrugging it off as no big deal as I went back to my office.<br />
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Once in my office, I opened my planner. I felt grateful to still be a week away from having to turn the page to the next month, October, where the words SURGERY were written across the date of Thursday, the 23rd. Still a month to go, so no need to panic. Right?<br />
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Now, I've turned the page to October, and the days are slowly rolling one day into the next as I plan and prepare. I've had all of the required scans and am waiting for a follow up conversation with my surgeon. I've submitted all of the documents to my employer, my primary care doctor, my surgeon's office and I'm waiting on responses. Pre op labs are scheduled, hotel reservation is made. Flights are booked. I bought new pajamas and am considering cutting my hair. Things are moving right along, both very quickly and at the same time, at a snail's pace.<br />
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I have a million questions for the surgeons that spin around in my head continually. How much range of motion will I lose? How do you determine where to fuse me? How do you know what my natural gaze should be? Will I have trouble eating or swallowing? And the list goes on and on.<br />
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I busy myself with packing- because my husband I are likely insane to be moving the week before surgery. When I'm not at work, I either pack or rest. Or, like today, I research. Today, I'm researching foods I should avoid with mast cell activation syndrome, because I want to have a list of the foods I can have available for those taking care of me. I worry about how I'll feel post op, then I stop and pray and try to clear my mind.<br />
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I decide to pour this out on the block I started about nine years ago--I don't even know if anyone ever reads it , but I plan to use it to track my recovery, So I decided to start today.<br />
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19 days and counting!Michele Collumhttp://www.blogger.com/profile/00640668111778263055noreply@blogger.com1tag:blogger.com,1999:blog-3419656553928863194.post-20496703388169659342019-10-05T10:36:00.001-07:002019-10-05T10:36:21.880-07:00Chiari Awareness Month post- 2019 For the last few days of Chiari Awareness Month- I thought this to be a fitting cover photo-- Since so many of us get brushed off by well-meaning doctors, friends and family because we don't "look sick". I am very grateful and thankful to God every day for not "looking" the way I feel. I posted this over six years ago- before my first Chiari surgery. Now, over six years later, I am counting down the days to Chiari Surgery #3, a combo of Chiari decompression revision and occipitocervical fusion for craniocervical and atlantoaxial instability. While I haven't posted about it much, I've had many months of traveling to see specialists, medication protocols, new diagnoses, relentless dietary changes, physical therapy, neck brace trials.and more MRIs than I can count. -Literally- <br />
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Each specialist has brought new light to some aspect of Chiari and I am so grateful, even though while going through it, I've been ridiculously emotional, frustrated and sometimes just down right angry. <br />
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What started out as simply "Chiari" has expanded into, arachnoid cyst, Ehler's Danlos Syndrome Hypermobiity Type (hEDS), craniocervical instability, atlantoaxial instability, mast cell activation disorder, Hashimoto's,...and possibly more that my neurosurgeon is now investigating. <br />
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I've worked with top neurosurgeons from basic Chiari surgeons, Dr. Dong Kim (Mischer Neuroscience-Houston, TX) and Dr. Kaisorn Chiachana (Mayo Clinic, Jacksonville, FL) to actual Chiari/EDS specialists, Dr. John Oro (Chiari Institute, Aurora, CO), Dr. Fraser Henderson (Metropolitan Neurosurgery, Silver Spring, MD) and Dr. Jeffrey Greenfield (Weill Cornell, NYC, NY). <br />
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I've learned so, so much over the past six years- and am realizing that this process will be ongoing, nothing is certain and each of us has to be their own best advocate.<br />
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So, If you have read all the way through- thanks so much for taking the time- Bob and I would appreciate any prayers as we travel to NYC next month for surgery on October 23 with Dr. Jeff Greenfield and his team at Weill Cornell.<br />
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And remember, don't let looks fool you, you never know what struggles are hidden behind smiling faces on Facebook. #ChiariMalformationAwarenessMonth #EhlersDanlosSyndrome #ChiariMalformation #Imakechiarilookcool<br />
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Michele Collumhttp://www.blogger.com/profile/00640668111778263055noreply@blogger.com0tag:blogger.com,1999:blog-3419656553928863194.post-1111863155967419442019-05-11T10:29:00.001-07:002019-05-11T10:46:35.656-07:005 Year Post Op UpdateMy birthday this year, April 16 marked five years since my last brain surgery...<br />
I am still amazed and sometimes even stunned to realize I've actually undergone two such surgeries.<br />
Surreal isn't quite the word for it. I guess for me the feeling is more like "unreal".<br />
I know it happened, I sport around the scars that prove it.<br />
Yet it still seems to have happened to someone else. Someone in a different lifetime. Someone that wasn't quite ME!<br />
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As these words appear on the page before me, I feel silly for thinking it. People all around have health issues of all types from chronic to terminal. Pain, suffering and sadness float around these people like an ominous cloud.<br />
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I wonder if I have such a cloud. If so, is it visible? What do others see when they see me?<br />
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Chiari Malformation and related disorders are more "invisible" conditions than most. Chiari patients appear normal on the outside. No one considers them "sick" or "ill". We are a stoic group, only showing our weakness, sadness and/or pain to a select few individuals that we very selectively let in to our inner sanctum. <br />
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Blogging was a huge outlet for me when I was first diagnosed. I wanted to make the world aware of this very common yet "rare" condition that is misunderstood by the medical community and barely understood at all by the general public. After two surgeries and now five years of recovery and living a "normal" life with a busy full time job, I am more reclusive than I ever thought I would be about Chiari. Chiari is a lonely disorder, isolating with its 'flare ups' (for lack of a better word) and activity limiting. To be honest, I think we self-isolate in order to better care for ourselves, physically and mentally. Explaining Chiari over and over and over again to the same people is tedious and frustrating. I suppose that's why I stepped away from this blog for such a long while. Discussing Chiari with friends, family and even strangers became monotonous work that had to be repeated all too often. Comments like, "but didn't you have surgery to cure that?" and "but you don't look sick" weigh heavily, making the Chiari patient feel defensive, needing to continually justify his/her illness/symptoms/reason for missing social events/etc.<br />
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Five years has been a huge roller coaster ride with this disorder. Really, I've been riding the roller coaster longer than that- being diagnosed in August 2012. I searched for months for a neurosurgeon to treat me. I went to a few of the "greats", being turned away or brushed off, or told to "give it time". Then had my first surgery in January 2013 and the following in April 2014. <br />
That being said, I can trace symptoms back to childhood and even before I was born I exhibited signs of the disorder that are now considered a reason for concern in an unborn child. <br />
It has been a long, winding, bumpy road. And it keeps going.<br />
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In 2017 my symptoms recurred. Not to an alarming point, but at least to a point of concern. I again saw neurosurgeons, neurologists and primary care doctors. I was told my MRIs look stable, so I have just lived with the things that recurred. Just part of life, no big deal. Dizziness when looking up, head and neck pain, intolerance to riding in cars/trucks, spontaneous choking, blurred vision, tinnitus, intractable fatigue, inability to sleep, numbness, vision problems...but- still, I've worked and figured out a way to live a relatively normal, reclusive life. I've isolated myself more and more from friends, family and society at large. I've focused on work, writing, existing.<br />
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February of this year, things changed drastically. I was hit from behind in an auto accident. My car was at a total stop waiting to turn and the person that hit me didn't see me. He never even attempted to use his brakes. Of course the hit jarred me, snapping my head forward. Instantly my vision blurred and I had left sided facial, hand, leg and foot numbness. My head and neck throbbed and I was taken from the scene to the emergency room. In the ER, I was seen by a nurse and a PA. No one did a neurological exam. I was sent for a CT scan and given a shot of Dilaudid for pain. The PA told me things looked "stable" on the CT and that I should see a neurosurgeon if not better in a few days.<br />
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Now it's May and my symptoms have worsened consistently. Head and Neck pain, difficulty swallowing, ringing in ears, can barely stand to ride in a car, but can drive one if the road is relatively straight and not bumpy, numbness in pelvic area, electric shocks in feet, numbness in back, brain fog, blurred vision, dizziness...and the list goes on. I finally got into see a neurosurgeon a month after the accident only to be told my case is very complex. (No kidding?) A referral was made to a more specialized neurosurgeon in Maryland and today, I currently await for May 23rd when I see that doctor.<br />
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I'm not complaining really. Perhaps this is more of an "explaining" than "complaining". Or maybe its the guilt of not being more active in the Chiari community like I was before. Or maybe the guilt of not being more active in the lives of others as I once was. I don't think I'm depressed. I think I'm just exhausted with the process. Each doctor visit with any doctor turns into a battle of sorts. I think my armor has gotten a little chinked and I am a little war weary. Maybe that's my problem. It's possible, that there is no problem at all, I'm just a normal person having a normal little venting session.<br />
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Maybe I have expectations that could not possibly be met. I had hoped and really thought that by five years post op I would have a remarkable new health status. I was told to figure one month for each year of age I had symptoms for recovery time. I had the last surgery at age 44, so I guesstimated a four year return to "normal health". I knew I would likely never be symptom free, but admit I am disheartened to be back at what feels like the beginning, begging a doctor to listen and to actually want to help me. <br />
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So, that's my 5 year surgical update and whining session.<br />
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On the brighter side, during those 5 years I gain two more beautiful grandchildren, another beautiful daughter in love, bought a new home and have worked at a "new" job for the past 3 years. I've traveled to Australia, France, Italy and Greece, along with several destinations in the U.S. - Without those surgeries, I wouldn't have been able to enjoy life as much as I have and I am very grateful for that! <br />
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I will post an update here after my visit with Dr. Henderson in Maryland later this month. Michele Collumhttp://www.blogger.com/profile/00640668111778263055noreply@blogger.com0tag:blogger.com,1999:blog-3419656553928863194.post-32797632329712930002017-07-01T05:21:00.002-07:002017-07-01T05:44:18.945-07:00Deja Vu...It can happen to you (Um, I mean...Me!)<br />
News Flash: I am an addict. <br />
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There, I said it. I need a twelve step program for addicts.<br />
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I am addicted to Dictionary.com. Totally addicted.<br />
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I can't put two sentences on paper without using it as a reference. I get "Word of the Day" email alerts and I thrive on acing every quiz on the website. Maybe that makes me more of a nerd than an addict. Either way, it's a problem I am aware of and I plan, one day, to seek help.<br />
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But, not today.<br />
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Today I referenced, <i>deja vu. </i> I needed to be certain of using the term appropriately. Here is what Dictionary.com has to say about this term:<br />
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<header class="luna-data-header" style="box-sizing: border-box;"><span class="dbox-pg" style="box-sizing: border-box; font-size: 20px;"><span style="color: #351c75;">noun</span></span></header><br />
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<span class="def-number" style="box-sizing: border-box; display: block; float: left; padding-right: 5px;"><span style="color: #351c75;">1.</span></span><br />
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<span style="color: #351c75;"><span class="dbox-italic" style="box-sizing: border-box; display: inline; font-style: italic;">Psychology. </span>the illusion of having previously experienced something actually being encountered for the first time. </span></div>
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<span class="def-number" style="box-sizing: border-box; display: block; float: left; padding-right: 5px;"><span style="color: #351c75;">2.</span></span><br />
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<span style="background-color: white; font-family: "verdana" , "arial" , sans-serif; font-size: 15px;"><span style="color: #351c75;">disagreeable familiarity or sameness: </span></span></div>
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<span style="background-color: white; font-family: "verdana" , "arial" , sans-serif; font-size: 15px;"><span style="color: #351c75;"><br /></span></span></div>
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My focus is on the second definition. Because, this is where I live right now, in a state of disagreeable familiarity about what is going on inside my skull. I'm not happy about it. Not one bit, but it's time to face the music. </div>
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It's happening again. All of it. </div>
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Around January or February, sporadic headaches began to come in more frequency, dizziness, pressure...not continual, just subtle reminders that yes, I have a less than normal situation existing within my skull. Slowly, these issues have increased, or perhaps morphed is a better word..into almost constant neurological issues. Pressure headaches wax and wane, but feel I have on a tight headband at all times, in varying degrees of tightness. Vision problems hit me hard about two months ago, and now added to that is a constant high pitched hum that drowns out everything except the constant dialogue I have going on inside my head. </div>
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The dialogue has been going something like this, <i>"Am I dreaming this? Is it really happening? Should I go to the doctor? Do I need a doctor? I don't have a doctor. This will go away in a few minutes. I have to go to work. Does anyone care? Do I care? Should I tell someone? Who should I tell? Does anyone really care? Will my family be annoyed? What the heck is going on here?"</i></div>
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Over the course of the past several weeks, I have been in touch with my neurosurgeon's office and will be going back to Houston July 10-11 for a new set of scans and a face to face with the man himself, Dr. Dong Kim. Dr. Kim is a world-class neurosurgeon. He does not claim to be a "Chiari Specialist", but he is a brain tumor rock star. By definition, arachnoid cysts are considered to be a form of brain tumor. Since I have a custom cranial combo of Chiari and Arachnoid Cyst...Dr. K is the guy for me to see first. He performed my Chiari Decompression and Arachnoid Cyst Fenestration in 2013, then my Cranioplasty and Intracranial shunting in 2014. He told me then that if we got to 5 years post op we were likely home free. Now, I am three years post op and feel like I've done really well. No complaints from me. I've traveled all over the world. I work a rigorous full time job. I have a full, beautiful life that would not have been as full without the last two surgeries. </div>
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<b>So now, here we go again.. </b></div>
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I hesitated to post on my blog about this...or anywhere. For two reasons: 1. In recent years, I've dropped out of Facebook Chiari Support groups due to so many bullies in those groups (which is really the saddest thing I've ever seen) and in recent years, I've dropped out of the lives of many people. </div>
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Not too long after my second surgery in 2014, tragedy hit my family. At the time, I was busy coaching others with Chiari, helping them rebuild their lives. I was very involved in support groups in Dallas and I felt great about being the advocate I had become for others. Yet, when tragedy hit home (which I won't go into, but if you know me personally...then you know), I did not get support in return. I got lashed out at, dropped, deleted, snapped at, even slandered. So, I just retreated from it all. </div>
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A few months ago, when symptoms started returning, I stuck my head into a few groups and honestly, am appalled at the bullying that still goes on. I have found only a few places that feel supportive and I am truly deeply saddened that some people have turned their own physical pain into a weapon to use against others. Really, people that live with neurological challenges need each other. We need the understanding of other people that have been right where we are, face the same challenges, have the same thoughts and fears. </div>
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So, here I am. I'm putting my thoughts and words out into the world again on this blog. I realize there is purpose in all of this. Writing about my experience may only help one person, but one person is enough. </div>
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In the past, I've held back a little on this blog. I didn't realize it until I re-read some old blog entries. Those days are over. Expect the writing to be more raw, real, even visceral. Remember, if you don't like what I have to say, you have the write to not read. Exercise your rights. I'm all for you. </div>
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So, here is an excerpt of my personal journal entry from yesterday: </div>
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<div style="font-family: Cochin; font-size: 14px; line-height: normal; text-indent: 18px;">
My ears ring so loudly I can barely hear over the deafening hum. </div>
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When I stand too quickly (which is normal pace for the rest of the world) I can hear almost nothing for 5-10 seconds. The pressure in my head is so strong and forceful on standing that I have to stop in my tracks. There is no choice. I have to stop. I can't even speak at these times, only pause, wait then slowly, press on.</div>
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I’m back where I was 4 years ago. I feel like I am constantly wearing a very tight headband. </div>
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Very tight. </div>
<div style="font-family: Cochin; font-size: 14px; line-height: normal; text-indent: 18px;">
Pain…ever constant in my head, neck, shoulders. Dull pain, or sharp pain. Some pain- 98% of the time. </div>
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I’m mad about it. </div>
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I don’t know how to not be mad about it. Or frustrated. Or sad. I am all of these things. </div>
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The thought, the mere thought of another brain surgery makes my insides wince. I don’t know if that will be the answer, but if so, I don’t know how I will get through it a third time. I also don’t know what I will do if Dr. K says there is nothing to do about it, just live with it. I know nothing at this point. In 10 days I will be in Houston looking at scans with him. He will be hugging me and kissing my cheek like every time I’ve seen him before. </div>
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Whatever the outcome, I will rally and face it boldly. My face may be tear streaked, but my chin will be held high and I will not give in to pain or fear. </div>
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I’ve changed over the past three years. I’m stronger now. Stronger for myself. Stronger because I had to be. I realize the only person that can advocate for me is me. </div>
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So, I’ve got a lot of work to do. </div>
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Deja Vu...A disagreeable familiarity or sameness. The word totally fits. </div>
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My Constricted Cranium...the Saga Continues. </div>
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Michele Collumhttp://www.blogger.com/profile/00640668111778263055noreply@blogger.com2tag:blogger.com,1999:blog-3419656553928863194.post-70084244543445011452017-02-21T08:47:00.001-08:002017-02-21T08:47:26.311-08:00Sometimes I forget I have Chiari...and how remembering brings me JOY!Sometimes I forget I have Chiari.<br />
How is that possible?<br />
Living with a disorder so relevant to my daily activities, it seems its presence would smack me in the face all day, every day.<br />
Yet, it doesn't.<br />
Many days, Chiari, or my brain, or brain surgery never comes to mind (no pun intended).<br />
Then, other days, I am overwhelmingly aware of its presence, of my uniquely shaped skull and those things that once screamed out at me as limitations.<br />
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Today has been one of those days. Having the flu, with coughing, body aches and chills really is not so fun. Not fun at all. As I reached my aching arms out from under my bedspread this morning, willing myself out of bed--it hit me. Hard. Vertigo. I fell back on the bed and braced myself until it subsided, <i> just head congestion,</i> I thought. Eventually, I fell back to sleep. Hours later, I shivered myself awake. Freezing, I attempted to roll over and snuggle up to my husband when it hit me again. Debilitating vertigo. Spinning, can't-move-so-hold-on-until-its-gone vertigo. <br />
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Then I remembered. Last time I had the spinning dizziness this bad, I was diagnosed with Chiari. Now almost five years later, again- the room kept spinning. I allowed my body to go limp as I laid in my husband's arms and sobbed. The nurse in me knows this is likely brought on by the flu virus my body is busy fighting. Rationally, I know the odds of this being some problem that could require another surgery are super slim. Yet, just for a few minutes, I allowed myself to become a victim again. <br />
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My mind raced back over the past few years of diagnosis, the search for treatment, surgery, recovery, pain, losses, wins, physical therapy, massage, work, writing, loving, losing, supporting, giving up, giving in, letting it be, hating Chiari, hating my body, loving my body, the people I've met through this, the people I've lost through this, financial loss, financial gain, travel, headaches, MRIs, choking, walking, fatigue, energy work, body work, inner work....then I slept. <br />
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Upon waking, the tears had dried on my face making my eyes feel tight, my damp shirt clung to my body as I slowly and purposefully turned over, sat, then stood. On shaky legs, I steadied myself against the wall, crept slowly to the door and down the stairs. The room never started to spin, I did not get dizzy. I did not fall down.<br />
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I did, however, drink a glass of water, make my way to the sofa, snuggle under a blanket, watch the sunrise and shed precious tears of gratitude. Appreciation flooded my body as I realized, nothing has changed. I am still beating the odds. My body is up to the task of living, loving, thriving (not merely surviving). <br />
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As my tears once again dried up, I realized that I had forgotten for a brief time that I had Chiari. Like the way one forgets for awhile they they were abused, raped, abandoned or betrayed, stumbling intrepidly forward in life, with each feeble step putting distance between what <i>was </i>and what currently <i>is</i>.<br />
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Often, I am asked (sometimes angrily) why I delve into the past, examine my life, dissect minute details and question, question, question everything. <i>"Can't you just be happy to have survived? Can't you just move on? Be grateful? Don't you realize that other people have things so much worse? Well, you should just count your blessings." </i><br />
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Don't get me wrong, I am not opposed to counting blessings. I do not write these thoughts in a manner of comparison or competition with the wins and woes of others. I write, I ask and I examine because it feeds my soul.<br />
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Examining the why of it all, the wonder of it all, the pain of it all catalyzes the meaning of it all. Understanding leads to acceptance. Acceptance soothes the barbs of sadness. Soothing evokes easy movement. Movement leads to increased energy flow. Increased energy flow ignites endorphins and soon there is an eruption of joy.<br />
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Having the flu reminded me I have Chiari and that my neurological system is delicate. Understanding that because of this, the flu and its remedies (like Tamiflu) affect me differently. Accepting this helps me give into the process of healing, even the moments of sobbing defeat. Soothing and being gentle with myself makes moving through the process easier. As the movements occur, my energy is increased, I feel better and more invigorated...and I use that energy to spill my thoughts onto this page. Writing brings me great joy.<br />
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So, yes! Sometimes I forget I have a Chiari Malformation... and remembering that I forgot brings me great joy.<br />
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<br />Michele Collumhttp://www.blogger.com/profile/00640668111778263055noreply@blogger.com0tag:blogger.com,1999:blog-3419656553928863194.post-39144780316776841512015-07-25T06:02:00.002-07:002015-07-25T06:04:23.936-07:00Pursue Life With Passion<span style="background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 19px;">I </span><br />
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Brain surgery blues? Been there, done that...(still doing it most days)...But there is so much more to life than that part of who I am. </div>
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Who are you? Who do you want to be? What is it worth to you? </div>
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I ask myself these questions on an almost daily basis when I have to kill the desire in me to stay in bed and nurse a headache, dizziness or vision problems...some days the pain wins, but most days...living life wins. I whisper to myself, "Get that rebel inside you up and moving..." So that's what I do, and it's not easy, but I want life more than I want to feel comfortable. Pain is just pain, so unless it's knocking me down...I keep myself on track for the day. This is why I do what I do now. I coach other women to defy pain, emotional, physical, spiritual. Breathe new vigor into their life. Resurrect their inner rebel. Live out loud. AND--I LOVE IT!</div>
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I love the thought that my passion for life may be inspiring to my (very grown-up) children...After sleepwalking through an unlived life for twenty years, the past 5 have been a roller coaster of passion, travel, writing, creativity, brain surgeries, moves, new frontiers and not backing down from any challenge that came along the way. I love the <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/bigmagic?source=feed_text&story_id=10153499557809104" style="color: #3b5998; cursor: pointer; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 19px; text-decoration: none;"><span aria-label="hashtag" class="_58cl" style="color: #627aad;">#</span><span class="_58cm">bigmagic</span></a><span style="background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 19px;"> that is continually flowing through my life. My hope is that my two creative, passionate, brilliant kiddos continue to pursue their dreams & live life on their own terms with the unique gifts they each bring to the world.</span><br />
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<span style="background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 19px;">So how about you? Time to #resurrectyourinnerrebel? I'm your girl. Visit my website to schedule a strategy session...You can transform your life. www.michelecollum.com</span>Michele Collumhttp://www.blogger.com/profile/00640668111778263055noreply@blogger.com0tag:blogger.com,1999:blog-3419656553928863194.post-76157809553071785402015-07-20T10:43:00.000-07:002015-07-20T10:43:17.625-07:00Writing Around In Circles Until The Truth Comes Out<div class="separator" style="clear: both; text-align: center;">
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Each time I start to write, thinking something profound will come from my words, </div>
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Nothing does. </div>
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I have all of these profound thoughts to share with the world about how it feels to live with Chiari, and how it feels to live with a history of emotional abuse, </div>
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and how it feels to just want life to be "normal".</div>
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I stare here blankly at the screen, in my dedicated writing time </div>
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and I'm blocked. </div>
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I realize now that the block is not caused because there is nothing to say. </div>
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The block is because so many words can't fit through my mind hole and filter down to my fingertips. </div>
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Like rushing waves crashing agains a dam, waiting for the spillway to open up. </div>
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All I feel is loss. </div>
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For a person that is upbeat on a most regular basis,</div>
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A princess that has found her prince, </div>
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An heiress to grace, </div>
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All I <i>feel</i> is loss. </div>
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No, no loved ones have passed away. </div>
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No further tragedies have occurred. </div>
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My loss is deeper, graver, </div>
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Etched into my being. </div>
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I'm often reminded of the tragedy of the unlived life. </div>
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I vow with all that is in me that my story will be one that is lived out in technicolor. </div>
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As I vow, a tear rolls down my cheek </div>
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and I wonder. </div>
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What hinders me in living my dreams full out? </div>
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What keeps me small and still (at times)? </div>
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And what is my purpose really to be? </div>
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Is it to be the mouthpiece and the spokesperson for all who suffer with my same neurological disorder? </div>
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Is it to help carry the broken to shore while mending their limbs? </div>
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Is it to be strong and true and keep putting myself out there in relationships with friends who will never remain friends and family that barely remains family and a public who forgets heroes as quickly as they appear? </div>
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Should my writing be more dramatic? More factual? More autobiographical? </div>
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And quite honestly, does anyone really care? </div>
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Should anyone care? </div>
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Should it matter that children are starving in our country and all over the world? </div>
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Should it matter than an unfathomable number of pregnancies are terminated in the womb? </div>
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Should it matter that churches oppress people to the point of abuse...While using the name of God? </div>
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Does my voice even matter anymore? </div>
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Am I effectively ineffective? </div>
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Where are those who vehemently supported me in leaving an abusive marriage? </div>
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Where are they now but in the camp of my abuser? </div>
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Where are they who supported me through my surgeries, held my hand when I was fearful, </div>
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Eased my pain? </div>
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Hiding behind their own wounds I suppose. </div>
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The ones I inflicted when the great darkness came and I fell into loss. </div>
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These thoughts go through my head and I slay them one by one. </div>
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I cover the transgression with love and bid it farewell, </div>
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To be neither seen nor dealt with again. </div>
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And that works just great until another blow hits. </div>
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Another pain surfaces. </div>
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Another blow that hits below the belt and crumbles me into a pile of rubble. </div>
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Then once again it smashes down and I begin the slow march to restoration. </div>
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So today, with a headache and blurry vision, I am digging myself again from the rubble. </div>
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Going through the motions-Getting from A to B. </div>
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Getting the work done...and most definitely doing the work. </div>
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The work of living, of pushing forward, of pushing through. </div>
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I'm grinning and bearing it (with out the grin). </div>
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I just wish it didn't have to be so hard. </div>
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Honestly, all I want is one day without some sort of physical pain. </div>
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The emotional pain I can handle (I think).</div>
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I just want to have no pain...just for today. </div>
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Aren't I selfish?</div>
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I know...I'll do what really works. </div>
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I'll just smile and say I'm okay.</div>
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Works every time. </div>
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Michele Collumhttp://www.blogger.com/profile/00640668111778263055noreply@blogger.com0tag:blogger.com,1999:blog-3419656553928863194.post-34671909561147165092015-07-12T18:24:00.002-07:002015-07-12T18:48:11.185-07:00Release<div style="text-align: center;">
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Like many people, I can be really shallow. </div>
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I can take a situation, look at its surface, it's perceived appearance and make a quick, split-second assumption. </div>
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Dangerous. </div>
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Like many other people, I can be really deep. </div>
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Actually, I sort of live in the deep end. </div>
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I'm one of those people that dissects every aspect of my life, troubling situations and normal day-to-day activities. </div>
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Still Dangerous. </div>
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In my world, the world of entrepreneurs and the world of emotional damage and the world of Chiari and the world of writers (which I've got to admit is a weirdo freakazoid mix)...</div>
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In this weird, unparalleled, totally random mix of characters...self-inspection is a vital act. Self-inspection provides the life blood, the energizing force that drives creativity, healing, forgiveness, blame, intention, sorrow, bliss, awe, control, lack of control, frustration, perfectionism and random humor. </div>
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As an entrepreneur, I depend on this life blood, this catalyst to spark the next project or offer, as a survivor of emotional abuse...I let my experiences fuel my passion for helping others move past their scars to a life of receiving, as a woman with Chiari Malformation Type 1 and two brain surgeries under her belt, this energy shakes me out of bed on the worst days and challenges me continually to press on regardless of what symptom might be tossed my way. And, as a writer, this same self- inspection forces my hand every time I sit down to write. It leads me to a place of truth regardless of pain, shame, blame, guilt or regret. I often find I write better during these moments, they are more comforting to me than those unfamiliar thoughts/feelings of love, security, joy, happiness. </div>
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Sometimes, I have to reel myself in and Tame The Beast. </div>
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That's my pet name for living life in the zone of "what if" ...</div>
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"What if I have to have another surgery?" </div>
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"What if I don't?"</div>
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"What if my writing never sells?"</div>
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"What if it does?"</div>
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"What if the truth is that I am defective and undeserving of love?"</div>
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"What if I am?" </div>
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Success is just as scary as failure in my world. Honestly, it's all scary. </div>
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From moments of feeling fine to suddenly dizzy, shaky and ready to throw up, </div>
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Being able to exercise three days in a row to three days of being in bed. </div>
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No headache moments to excruciating headache within seconds. </div>
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The only thing I seem to be able to plan for is that whatever the plan is, it's sure to change. </div>
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Then getting caught up in the horrible "What Ifs" </div>
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This only adds to my misery and confusion. </div>
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Yesterday, I had a Scarlett O'Hara moment.. You know, the moment when you fling yourself on the bed in a fit of tears and wail as you cry. (If you don't know what I'm talking about...stop reading now, this blog isn't for you).</div>
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Fortunately, I had a friend talk me down...talk me through and get me back into reality about where I am in life and just what hell I've been through. </div>
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My last 3 years....almost unbelievable. My last 9 months...I should sell the movie rights. (my entrepreneurial mind is always at work). </div>
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My friend suggested my current major health issue.. and infection that is being stubborn, so stubborn in fact that I am on my 8th... count 'em EIGHTth round of antibiotics, which is what sent me in to the Scarlett moment... My friend suggested that perhaps the metaphysical parallel is correct... that the infection keeps coming back to the same area because I am "pissed off" at someone. </div>
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Some ONE? How about Some TWENTY or so? As we talked, I saw the faces in my mind of the people who have hurt me over the past year or so, they have abandoned me, or lied about me, or manipulated words to shed a bad light on me, or professed to love me...then when I needed them most they turned away...oooh.. or the big one---they hurt my child. I ran the hurt roster through my head to determine just which person was the culprit. Who am I focusing so much anger on that I'm keeping myself sick? Which one? The jerk ex husband that has made up so many stories about me that even HE believes them now? Or maybe the ex-friend that claimed and professed her undying love and friendship only to pack up all of her friend toys and get the heck out of Dodge when she saw the cowboys coming. How about the other friend that cares so little about my condition that she can't even remember what it is...Now that would make anyone upset. </div>
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Alas, what I realized at the end of the list of sins of others was that none of these "others" really brought up any anger in me. Disappointment, yes. Sadness, yes. Loss, of course. </div>
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My final conclusion (insert drumroll here), I'm mad at MYSELF. </div>
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I closed myself off, shut myself down, built a really sturdy wall and dared anyone to come in. I'm upset with myself for doing that. I'm upset with my body for not being stronger. I'm enraged that I can't do all of the things other people can do. No, not mad at God. Mad at myself. Mad that I get sucked into the "what ifs". Mad that I am not able to continually shake it off and keep coming back for more with no ill effects. Mad that at the end of the day I am what I feared all along:</div>
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I am merely human.<br />
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I'm not a super hero or a martyr. I'm not special or chosen or set apart. I am not indestructible or saintly. I'm just your average, ordinary girl from Mississippi who gets scared of things that go bump in the night. </div>
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I am neither immune to the "What If" Beast that taunts me in my weakest moments nor am I so benevolent that I can't just continue relationships with people that have hurt me as if nothing ever happened. </div>
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So the conclusion, the answer...the way to sort this out in my mind. One simple, easy word: RELEASE. </div>
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Easy to say, hard hard hard to do. </div>
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So today, I'm practicing releasing. Releasing fears, expectations, guilt, blame, false beliefs, anger, bitterness. And I'm releasing myself from the constraints I put on myself to be SuperHuman. Today, I start taking it as it comes with no pretense or anxiety. I live in the moment. </div>
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I am okay being all of the things that make up ME. </div>
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And once again, all is right in the world. </div>
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Well...almost. </div>
Michele Collumhttp://www.blogger.com/profile/00640668111778263055noreply@blogger.com0tag:blogger.com,1999:blog-3419656553928863194.post-78813047158898182192015-07-05T13:31:00.002-07:002015-07-05T13:31:47.881-07:00Open Apology to the Chiari Community<div class="separator" style="clear: both; text-align: center;">
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So, you honestly may not remember me.<br />
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There was a time I posted to my blog daily, even hourly.<br />
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Then.... I....stopped.<br />
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Why did I stop? What caused me to drop off the face of the planet for several months? <br />
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Whenever this thought or question came up in my mind, I blamed it on several things: family issues, working on my new business, moving...the list goes on and on. All of these are very valid reasons. The family issues you wouldn't believe if I told you...I mean, it's the stuff movies are made of...and the business-- yes, it's been difficult to transition my love of helping others into a business... and moving, well, if you've ever moved, you know the drill.<br />
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However, last night, one of the worst Chiari-symptom nights I've had in quite a while...my own truth smacked me right in the face.<br />
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SMACK!!! "<i>SNAP OUT OF IT!!!" </i>I literally yelled at myself. <br />
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The ugly truth? I wanted to be done. Finished with the Chiari story. I wanted to live above it all. I wanted to keep all of my symptoms, pain, fear to myself. I wanted my last surgery to be my LAST surgery. <br />
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I mean really, who cares if my depth perception is almost non-existence and I can't stand driving? Who really wants to know that my head has been hurting for about the past 10 months straight? Why does it matter if I'm having trouble swallowing again or if bladder issues are intermittently rearing their ugly heads? Does it really matter if I have tremors, numb spots and am continually saying the wrong word at the wrong time to the wrong people?<br />
<br />
Because of all of this.. Isn't it better to turn a blind eye to it, make everyone in my world assume I'm better and just get the hell over it?<br />
<br />
I just wanted to <b>make it stop</b>! <br />
<br />
I just wanted normal stressors to be normal stressors.<br />
<br />
In moments of weakness, I went to doctors, I had MRI's... and I never followed up on results or even sent my MRI's to the neurosurgeon that ordered them. Worse than that...I have never even looked at them myself.<br />
<br />
I'm a fraud, I'm a sham, I'm a fake.<br />
<br />
I put myself out into the world to be this Chiari Crusader...and I don't even want to face my own illness anymore.<br />
<br />
What did I do? I hopped on a plane every chance I got to go anywhere in the world that I could find a purpose to go. I ran. I dug myself in to my business... noble as it may be.. I dug in to helping others manage their lives with Chiari or A-cysts, or their lives after abuse... or their small businesses. <br />
I really did.. I dug in and did all of these things. <br />
<br />
I became a champion at handling my personal anxiety surrounding the trauma in our family. You know the drill... 2 Flexeril and a Klonopin and the anxiety just melts away... Then I could get down to business.<br />
<br />
I could work. Work, work, work.<br />
I could write. Write, write, write.<br />
I could ignore. Ignore, Ignore, Ignore.<br />
I could blame. Blame. Blame. Blame.<br />
<br />
Yes, I could do it all...No Chiari was going to rain on my parade. No one was going to tell me to slow down. No one else's opinion even <i>began</i> to matter.<br />
<br />
All doctors are idiots and I'm going to prove it by not needing one.<br />
<br />
Until last night, last night it all came crashing down. Last night, I needed a doctor. Last night, I needed a Chiari friend, like the ones that I used to text in the middle of the night. The ones that quit speaking to me when I started pretending I was no longer "sick". Last night, my world became <span style="color: #674ea7;">purple</span> again.<br />
<br />
Last night, honestly... <b><i>I was scared. </i></b><br />
<br />
Last night, I realized how I had abandoned the very community I set out to help. I was so busy being annoyed that no one reached out to me in my time of need (except for one..you know who you are)...I realized I had shut myself down. I was NOT serving others. I was serving my own ego, my sense of pride and wearing my badge of martyrdom as an invisible chip on my shoulder.<br />
<br />
SO here, I apologize to you, my tribe, my Chiari sisters and brothers and I vow to stop ignoring my condition, stop ignoring the cold hard FACT that we all need each other...and to stop ignoring the Fact that no matter how much I "say it isn't so"... things in my body are just not right. It's time to seek to another neurosurgeon, find a local neurologist and to face what's happening. It's time to get involved again, risk caring about people again and make amends where they are due.<br />
<br />
To my family...You are all right. I need to slow down. I need to be where I am and let go of the guilt and shame that surround where I am. <br />
<br />
No, I'm not stopping my business. On the contrary, I'm still pursuing it with all of the gusto I can muster. As one of my mentors, Gina DeVee often says, I'm "taking a stand for the AND". Chiari and Coach can exist in the same body. I do not have to forsake dealing with one in order to succeed with the other.<br />
<br />
I am giving my health it's rightful place in my life, making finding a new set of doctors a priority and making a conscious effort to reconnect with the community I do love so very much. I am proclaiming it to you...even though you may not know me...because I believe in going back to basics, back to the core of who I am and how I got to where I am now. At the core, we are the same. We have the same basic struggles, basic fears. <b>You are my tribe. </b><br />
<br />
Thank you in advance for your understanding. Please comment any thoughts or insights below...I'll be seeing you around in all of the old familiar groups and of course at the Conquer Chiari Walk in 2015 (not sure which location just yet).<br />
<br />
Thank you for reading this post and for your support.<br />
<br />
Michele<br />
<br />
www.michelecollum.com<br />
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<br />Michele Collumhttp://www.blogger.com/profile/00640668111778263055noreply@blogger.com6tag:blogger.com,1999:blog-3419656553928863194.post-19529250258016688312015-05-21T03:41:00.000-07:002015-05-21T03:41:09.102-07:00When Pain Enters The Game<br />
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<a data-mce-href="http://www.michelecollum.com/wp-content/uploads/2015/05/Thats-The-Thing-About-Pain-It-demands-2.png" href="http://www.michelecollum.com/wp-content/uploads/2015/05/Thats-The-Thing-About-Pain-It-demands-2.png" style="color: #555555; cursor: pointer; font-style: inherit;"><img alt="That's The Thing About Pain- It demands-2" class="alignnone size-medium wp-image-825" data-mce-src="http://www.michelecollum.com/wp-content/uploads/2015/05/Thats-The-Thing-About-Pain-It-demands-2-300x300.png" height="300" src="http://www.michelecollum.com/wp-content/uploads/2015/05/Thats-The-Thing-About-Pain-It-demands-2-300x300.png" style="color: inherit; font-style: inherit;" width="300" /></a></div>
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What really happens when pain enters the game? When our bodies</div>
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unwillingly dive into fight or flight mode? When the silent (or not so silent) alarm</div>
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goes off within our neurotransmitters that alerts us to pain?</div>
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Physical, blatant, oh-damn-that-really-hurt pain. Invisible, silent, my-life-willnever-</div>
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be-the-same pain. Screaming, shouting, why-won’t-they-listen-to-me pain.</div>
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Aching, longing when-will-it-ever-stop pain.</div>
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I’m sure there are many other types of pain…but these four strike me tonight.</div>
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These four seem to swarm around my life like a perpetual beehive of activity.</div>
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Waning for moments here and there..then bursting through with an unmistakeable</div>
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buzz and an unconsolable bite.</div>
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Physically, I am daily challenged by a life of chronic pain. Getting out of bed</div>
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is continually an act of will…something I must do in an effort to prevent being</div>
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sucked in to a life of woe and misery. A life filled with doctor appointments and</div>
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outrage at the medical community. A life riddled with more and more and more</div>
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instruments and foreign objects being jammed into my head, making me less me</div>
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and more synthetic. In particular, I’m challenged by daily activities, walking my</div>
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dog, carrying groceries, lugging my luggage around the airport. Previously, I wrote</div>
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about this pain daily…only to find the more I wrote about it… the more I dwelt</div>
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upon it.</div>
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Emotionally, I am a bit of a hot mess. I have this amazing life that makes me</div>
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so grateful it brings me to tears. I have this past life, where I’m continually being</div>
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burned at the stake, which also brings me to tears. My tears flow in gratefulness</div>
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because I now see that God is pouring out on me the blessings I was told long ago I</div>
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was not worthy to receive. I was told I was stupid, I wanted to much and I needed</div>
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to stop trying to be “Billy Graham” in everyone’s lives. I was told church wasn't</div>
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important and that I was an embarrassment to be seen with. I was told I wasn’t</div>
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worth the medical bills I incurred and that a “bullet is cheaper”.</div>
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That was my story, and my underlying belief for many long years. I wore</div>
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shame like an ill-fitting cloak as I prayed to God for a sign, a reason… some basic</div>
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worth. Until one day, like Elizabeth Gilbert said,<em style="color: inherit;"> “the only thing more difficult</em></div>
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<em style="color: inherit;">than leaving, was staying”</em>. So, like Elizabeth...I made a decision… to pray, (you know, like</div>
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...to God) to make peace with</div>
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God and to leave that abusive facade of a marriage, praying that even if God left me alone for the</div>
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rest of my life, I would be okay with it because I would be free of scorn and</div>
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ridicule, I would live without fear and life would become a virtual bed of roses.</div>
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The truth is, I am not free. The more time that passes- the grander the stories</div>
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about me grow. That causes more pain. Sure, there is the "sticks and stones may break my bones but words</div>
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will never hurt me" approach. Let's get real, who did that ever work for?</div>
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I want to scream at the top of my lungs:</div>
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“Haven’t you hurt me enough?”, "Haven't you hurt our children enough?"</div>
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“When can I stop being your whipping boy?” and</div>
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my favorite way to put a spin on it , “Wow, you must still be really hung up on me to make up all of</div>
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that…”</div>
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Pain comes from “friends” and “family”. People who have turned a blind eye to what</div>
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has happened to you because he is part of their family. (Gentle reminder, so was I for over twenty</div>
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years) That’s fine, support your family...but does it have to be an either or? Did I cease to be a person</div>
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because I chose to cease to be a victim?</div>
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</div>
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Emotional pain comes from rejection. Even within the Chiari communities ,</div>
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rejection happens. The very minute I started standing up and declaring I would go</div>
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against the odds and this disorder would not rule me…my allegiances changed. I</div>
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became an outcast, a loner, a freak. I take no scheduled meds and only contact my</div>
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neurosurgeon on the rarest of occasions. I want to move forward, shake it off and</div>
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still LIVE. So what if I have to take two muscle relaxers and a clonazepam upon</div>
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returning home from a trip-- I am LIVING! I am seeing the world. I am going for it in life.</div>
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For this, I am judged. I am scorned for not “checking in on people”…though no one seems to</div>
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notice that “no one” is checking in on me. Will I always be the girl showing up with a casserole when</div>
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others are sick, only to find on my darkest days...guess what? No Casserole.</div>
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Did you know that two way streets really do go two ways?</div>
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Then family tragedies hit.. and the “friends”, they scatter like flies. Pain</div>
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results. The pain of really longing for a friend to just sit down and pray with you.</div>
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Or to even care enough to ask questions. The longing for understanding, for acceptance, for just a simple</div>
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hug.</div>
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I suppose this really is just an essay about pain in its many forms. Real pain. Pain that has grown from</div>
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neglectful parents. Pain that has been watered by harsh words and neglect. Pain</div>
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that seems so uncontrollable that though it be emotional, it is felt physically and it</div>
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will not be silenced.</div>
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Feeling like a single parent. The weight of the world on my shoulders. The</div>
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joy of triumphs with the children and then the agony of defeat. The sheer agony</div>
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of knowing a child has been so traumatized that mom’s TLC won’t help. The fear</div>
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that inappropriate advances were made by a family member..knowing that story lies</div>
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just beneath the surface-waiting to pierce through and reveal itself at any given</div>
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moment. The pain of an unjust legal system and the search for good (and affordable</div>
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resources for PTSD). Knowing I'm going it alone in this area simply because I'm still</div>
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being punished by an ex husband that is too blind to see that his efforts to hurt me and</div>
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make me "pay" for some contorted sin he made up to justify his own lack of parenting is</div>
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only hurting his children. Then the realization that he hides behind a church pew while he</div>
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dishes out his untrue, justifying and blatantly neglectful edicts results in a different type</div>
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of spiritual pain that is better left for another essay.</div>
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Pain… it comes in all flavors, it’s fat-free and has no carbs or calories.</div>
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However..this <em style="color: inherit;">pain</em>, it keeps us small. No one really wants to know pain, yet</div>
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everyone wants transformation. Everyone wants to evolve, to grow, to level up. In</div>
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perfect balance, transformation cannot occur without pain. So we must be careful</div>
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what we want, really inspect the desires of our hearts and ready ourselves for the</div>
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aches and pains that lend to metamorphosis.</div>
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I believe my part of the pain process is to acknowledge it, and assign it a</div>
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home, a label, a purpose. As a master chef, I slice it, dice it, stir-fry it and serve it</div>
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up beautifully until I can swallow it completely…typically doing so just before it</div>
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takes over and ultimately consumes and controls every aspect of who I am.</div>
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I imagine this to be how depression feels…long bouts of pain on steroids.</div>
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Hurt, rage, guilt, shame all morphing into such a heavy burden that it’s victim is</div>
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weighed down with it to the point of becoming paralytic.</div>
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So today, I write about pain. Tomorrow… I may write about pain again. Or</div>
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perhaps joy… or perhaps daffodils… But what I truly believe is that I will continue</div>
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to write about pain until its all written out of me and I am free of it. I share it with</div>
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you because if what’s most personal is most universal, then you struggle with pain as</div>
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well.</div>
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Behind every perfect smile and in every “perfect” home, pain lurks in</div>
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the corners, in the silence, in the dark. Those without voices are consumed by it.</div>
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Those with voices cannot hold it in. Truth will always be revealed. No matter how</div>
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much it may fight to stay hidden. I believe the truth of pain lies in our very core, in</div>
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who we are, who we were always intended to be.</div>
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I believe the denial of its existence is like scoffing at God and His divine plan. I</div>
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believe pain is part of the fiber of our being… so what I truly believe is that pain</div>
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doesn't<em style="color: inherit;"> enter the game</em>. Pain merely sits patiently in on the sidelines until we are</div>
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available to play.</div>
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In today's contest, I emerge as the victor. I will rest my weary bones, soothe</div>
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my tear-worn eyes and ready myself for the next match.</div>
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What I know now is that using my voice is more than half of the battle.</div>
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Visit my new website www.michelecollum.com to see just how I'm using my voice. </div>
Michele Collumhttp://www.blogger.com/profile/00640668111778263055noreply@blogger.com0tag:blogger.com,1999:blog-3419656553928863194.post-67807489899065093502015-03-12T23:41:00.002-07:002015-03-12T23:59:44.758-07:00Become A Student Of LifeAs I am reaching yet another Zipperversary...well, in about 4 weeks anyway...<br />
I am taking time to ponder everything that has happened over the course of the past year.<br />
This time last year I was prepping for a second brain surgery...had just moved to Dallas and just started a new job. My husband and I had started our own business and we were busily laying its foundation.<br />
<br />
Then it happened- a quick review of an MRI sent me back to Houston for testing and surgery. Round two of brain surgery recovery began.<br />
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As recovery began, our business activity slowed down. Everything slowed down. The surgery was deemed a success, though my vision would beg to differ. I set about on a journey to get my vision "fixed" - to no avail. Apparently, my brand of vision difficulty is a mystery...which should come to no surprise to anyone who has Chiari. We always seem to be the ones that defy the medical books.. that keep the doctors just shaking their heads. <br />
<br />
While dealing with this vision issue-- I managed to keep my job, take several business trips (and a few trips just for fun).. visiting family and friends in Ohio.<br />
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August found me hanging out in Paris, France for a week or so, for both work and pleasure. Seeing Paris with my daughter is one of the highlights of my life- I'll never forget it.<br />
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In September, I began a certification program to become a Transformational Coach, specializing in helping women reclaim their lives after divorce, abuse, trauma or chronic illness diagnosis. We took a brief trip to Ocala, FL to visit our family and friends there, and I even made it to the Houston Conquer Chiari Walk Across America, where I was excited to spend a few days with a dear friend in the Houston area.<br />
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In October... I went to Hawaii for a little over a week, where I simply marveled at the beauty around me. Before that, there was a business trip weekend in Long Beach, CA, where I wore high heels for the first time since surgery. It was both excruciating and elating! For a few minutes, before it became unbearable--I even felt pretty.<br />
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The end of October brought sadness to our family in a form that I still have trouble discussing. We are still reacting to this trauma as we slowly heal. Very, very slowly.<br />
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Since then, there has been a blur of travel, school, work, healing, tears, stress, loneliness, exhaustion. My daughter graduated from college and I've been to Southern Indiana, Miami, Memphis and Sydney, Australia. <br />
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I am still working, trucking through school- and I go back to Paris in about 8 weeks.<br />
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I can no longer make sense of what life is now or what it was. Everything seems upside down at times, while other times it makes perfect sense. <br />
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This is what I know. I've grown through it all. I've let go of people who I should've never held on to. I discovered the difference in a friend and an acquaintance. I found that the strangest people become support in the most difficult times-- and it's never who you think it will be. I've found that people mistake pain for indifference and that at the end of the day, the people who one can really count on are those who they least suspected to be there. I have found that tears are truly unending..they just never run dry. I've found that sometimes the best thing I can do for myself is just lay down and indulge myself in a good, long, sobbing cry.<br />
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The problem with crying is that it makes my head hurt, then my ears ring, then I get dizzy, my vision gets wonky and I'm done for. So, I tend to just hold it all in as long as possible until a breaking point comes and my defenses hit the ground. <br />
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So I guess my point is this-- I've survived yet another year after yet another brain surgery. I have packed more into this last year than most people pack into a lifetime. I have ached over losing people who never thought twice or looked back and I've gained a great many new people who seemingly appeared from nowhere, yet made all the difference. I've learned that getting too attached to this world can be dangerous, but not getting in the game of life can be lethal. <br />
<br />
I'm fully in the game. I am transforming the lives of women everyday through my work. I am slowly healing my own wounds and praying for the continued healing of our family. I've ac<br />
cepted about myself that I'm living life the only way I know how... with all my cards on the table.. I am all in. No halfway, no mind games, no agenda. No time for "I can't" "I shouldn't" or "Maybe later". No apologizing for who I am, what I stand for or what my desires are. I have the love and support of an amazing man...a family that loves me and a career I am passionate about. <br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-fQ2gOHhklAstODXpDLnSoux0mgOCa9pPuxTHrZsXjQ9bAuqbzYTZRZTBiJ7aN5ok8vogA5pdnv32kvwbHUyPzz4AHYd0DYxCq6wWkVxdhBUczILeAHPicbWusJgZVucR-LbrqUfeBok/s1600/IMG_3680.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-fQ2gOHhklAstODXpDLnSoux0mgOCa9pPuxTHrZsXjQ9bAuqbzYTZRZTBiJ7aN5ok8vogA5pdnv32kvwbHUyPzz4AHYd0DYxCq6wWkVxdhBUczILeAHPicbWusJgZVucR-LbrqUfeBok/s1600/IMG_3680.jpg" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Beautiful coastline of Australia, photo taken on the Bondi to Coogee Coastal Walk near Sydney, Feb. 2015</td></tr>
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So as I review the past year and look to the year ahead... I visualize more places I will travel (Paris, Los Angeles, Spain (several cities), Savannah Ga, St. George, Grenada-- already in the works!!), more lives I will touch, more people who will fill me up with joy, tears and amazement. I love setting goals and reaching them...I encourage you to do the same. Life is so much sweeter when every person you meet and every thing that occurs is viewed as a teacher. (Yes, even our pain is a teacher...learn from it) Then you are free to learn all you can from everything, soak it in and then release the person or event back into the world. Become a student of your own life. I promise you, your outlook on everything will change. Mine sure did.<br />
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<br />Michele Collumhttp://www.blogger.com/profile/00640668111778263055noreply@blogger.com2tag:blogger.com,1999:blog-3419656553928863194.post-74380760788873369992015-02-22T12:00:00.002-08:002015-02-22T12:00:41.508-08:00Living It Up Down Under<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgndliVP0IUD1vT9mi1vnoX9_W7UDHMTlMbbzGRaMdy5HrNiAFxZM-E2HIsniNx-kShBPGq6Z4Tja_UGfqquGkYgwcYeR39rVbIc5NySp8vG76gTd0qL-Y6UJ7m_HHtUozU27EALaU8Y1w/s1600/10403159_1625945997633948_386306725346827180_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgndliVP0IUD1vT9mi1vnoX9_W7UDHMTlMbbzGRaMdy5HrNiAFxZM-E2HIsniNx-kShBPGq6Z4Tja_UGfqquGkYgwcYeR39rVbIc5NySp8vG76gTd0qL-Y6UJ7m_HHtUozU27EALaU8Y1w/s1600/10403159_1625945997633948_386306725346827180_n.jpg" height="217" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My daughter and I out shopping in Sydney, Australia</td></tr>
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<br /><br />Sorry I haven't posted in quite awhile. <div>
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So a few updates: </div>
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I finished my Sugar Detox... felt great during it and afterwards. I was really glad to have my coffee back every morning... I have noticed a connection between gluten and tinnitus... so am not gluten free- but very conscious of how much I take in. </div>
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My coaching business is going well. Though I did have a week of Chiari headaches last week and three days of vertigo... I've been able to keep the plates spinning, work and handle my clients while also investing time in self-care-it makes all the difference. </div>
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Several days ago...(I've truly lost count)...we boarded a plane and flew 14 hours to beautiful Sydney Australia, where I am meeting with other coaches from around the world. </div>
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Besides a little jet lag on the first day.. I have never felt better...or in more harmony with my life, work and purpose. </div>
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Last night I attended a beautiful Soiree, wore heels.. and besides the fact that my left foot is numb again (I've learned heels=numbness), it was fabulous. I am so thankful to God for leading me to this place in life where I am able to travel this beautiful world and to encourage and be encouraged by so many purpose driven and like minded women. </div>
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I will post more later... Have a beautiful day today! (I'm sending this message from your tomorrow!) </div>
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Michele Collumhttp://www.blogger.com/profile/00640668111778263055noreply@blogger.com0tag:blogger.com,1999:blog-3419656553928863194.post-82122861586400085162015-01-25T16:50:00.000-08:002015-01-25T16:57:45.645-08:00Sugar Detox: Day 8One week down. Two to go. Don't I look happy?<br />
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I'm trying to make every decision about food, exercise, business, life, relationships...well, every<br />
decision about everything- very personal and purposeful. <br />
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I had no joiners in the detox... NONE! Apparently, it's too difficult to give up sugar, soy, caffeine, alcohol, gluten and dairy all at once.-- NO KIDDING!!! So, I had to decide just how badly I wanted to detoxify my body... and I truly want to. Paraphrasing Rose Cole (and I'm sure doing a poor job of it.. my apologies, Rose), she says that not being able to control my diet is like telling God I've got all I can handle and can't handle any more...any more success, any more responsibility, any more of anything. When I look at this detox, and my life through the lens Rose presents... Well, It makes every decision much more important. Each conversation more meaningful.<br />
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My truest desire is to impact the world. How can I impact the world if I'm unable to impact my own health? I mean I do what I can do for my health. Eat the right foods. Move my body. I know, I know.. we are zipperheads. We have holes in our skulls, most of us have loose joints due to Ehlers-Danlos and many of us have cranio-cervical Instability....but we can move. Maybe not jump... (Okay, definitely not jump)...and running is taboo... but we can move. Those of us that can walk.. well, we CAN walk.. and we should.. or ride a bike. Do yoga, pilates or floor work. I've started doing simple exercises with cans of soup or veggies...EVERY movement helps.<br />
<br />
So.. to sum up my week... It's been really smooth and easy. Since brown rice is on the menu, that has been my staple. I also made a beautiful soup from some uber colorful gourmet carrots, cabbage and quinoa. The ringing in my ears that had persisted for awhile now was gone after the first 24 hours. <br />
All in all it's been really easy and I am rarely hungry. I have to even remind myself to eat. I drink lots of water...and the only real craving I have is for blueberries and oranges... but I'm muddling through. Heck.. I'm almost halfway there!<br />
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This is the truth of it. I really am ready for more. More business, more travel, more of life. My desires in this life, in this world...I choose to do what ever it takes to receive them. No silly brain surgeries are going to hold me back. All they have done is give me enough extra grit to feel empowered enough to reach for the stars. <br />
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Do you have desires? (Notice I don't say dreams...a mentor of mine once said, "little girls have dreams, women have desires") Do you want to move forward, beyond your current reality? <br />
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Are you not quite sure <i>how</i> to do it? Well, my friend, neither was I...but I kept plugging away until I found my niche, my tribe, my calling. What I know now is to act with intention and faith, take inspired action and the <i>how</i> will come. <br />
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So as small as it sounds, one of my inspired actions is a 21-day sugar detox. Start small..but don't play small with yourself. If you don't like your your life...change it. It's your story..You <i>can</i> change your story. The world is waiting for the special gift only you can contribute.<br />
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Wanna try a the detox.. click<a href="http://www.rosecole.com/handouts/21DaySugarDetox.pdf" target="_blank"> here</a> for the one I am doing. Add yourself to my mailing list for special offers and handouts...You'll be glad you did!<br />
<br />Michele Collumhttp://www.blogger.com/profile/00640668111778263055noreply@blogger.com0tag:blogger.com,1999:blog-3419656553928863194.post-44514507358384582062015-01-18T14:39:00.001-08:002015-01-18T14:39:25.831-08:0021-Day Detox: Day 1As an experiment to see what food sensitivities I may have, I'm doing a 21 Day Sugar Detox. I'm following a plan prepared by Rose Cole. I am removing the following from my diet: all sugar and sugar substitutes, caffeine, gluten, soy, dairy and alcohol. I am halfway through Day One and am missing caffeine already. <br />
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Wanna join me? Here is the link to the detox I am following.. http://www.rosecole.com/handouts/21DaySugarDetox.pdf<br />
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I have a chat with Rose Cole tomorrow morning, so I'll pass along any pointers. <br />
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I can't wait to see how my brain reacts to this! At least life is always interesting! </div>
<br />Michele Collumhttp://www.blogger.com/profile/00640668111778263055noreply@blogger.com0tag:blogger.com,1999:blog-3419656553928863194.post-18311797941364888912015-01-18T04:44:00.001-08:002015-01-18T05:08:35.578-08:00Feeling Isolated? Speaking truth in this critical world is never easy.<br />
Occasionally, I get an email or comment from some stranger that has read a blog post who will<br />
tell me to quit whining, or that every one has problems or to "not quit my day job".<br />
And, occasionally, I get an email or comment from someone that reminds me that speaking truth<br />
in this critical world is necessary, however, it is rarely popular. <br />
So, if it's okay with you...I'll keep writing about the uncomfortable topics in life. Just remember, you make the choice to come to this site and to read. Your participation is optional. My writing is not.<br />
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I have spent several months of the past year taking classes... business classes, coaching classes, personal development classes, writing workshops, nutritional classes. I've learned that I am a perpetual student. I have this deep inner drive to learn, to grow, to expand my mind, to see all I can and to soak up every detail. Through these learning experiences, I connect with people. I engage. I fully commit to each relationship. I see the face value of a person.. the surface, the first impression and I totally engage, lock in, relate, love, befriend and care for. Sometimes I see this as a blessing, other times its a curse. <br />
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I am now 9 months post op for my second brain surgery...and almost two years post op for the first one. After all of this time, when I weigh the painful times, the dizzy times, the hearing loss, the speech issues, and currently-the vision problems that alter my activities on a daily basis, I can honestly say the worst part has been the isolation. <br />
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Being separated from activities and people has been the hardest part. While yes, I've been in multiple classes and know many people. Chiari is a very isolating condition. Initially, people are involved..but over time, these same well-intending people fall by the wayside. The expectation is that Chiari surgery is like any other... you get diagnosed, go under the knife, take a few weeks to recover and you're good to go. Now, wouldn't that be nice?<br />
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On the contrary, that's not what happens. What happens is that some symptoms are relieved, some are not, some symptoms worsen, some disappear completely and some new ones arise. So every day is a new day. One of my dear friends developed nerve damage after her surgery that was causing worse pain than she had before, so she then needed a second surgery to relieve the nerve damage. Yet another friend developed a post op infection that has eroded her skull, so now she lives in danger every day. Yet another now wears a brace for even the of shortest car rides, without it the pain is unbearable. For me? My surprise takeaway from surgery is my vision... or the lack thereof.<br />
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Much of my isolation comes from this rather than pain. I'm thankful for the lack of pain. However, I am very social and thrive on relationships. Now, I find myself often frustrated and even angry that I can't participate in my life like I did before. Let me explain. I am limited in the distance I can drive by myself...and I know I better drive early in the day before my neuro system fatigues. AND- I'm a better driver when not in traffic. (and I live in Dallas-so good luck with that!) Just yesterday, my son flew up to Dallas for a few hours. I drove to the airport, took him to pick up his new car, had lunch, then went to Whole Foods. I was in heavy traffic part of the time--very visually stimulating. However, I actually felt pretty good. Not really tired at all. So after I'm at Whole Foods for about 30 minutes, my eyes started to have this weird feeling that I always know means...<i>"Hey, we're about to be done for the day, so we hope you aren't driving." </i>But, of course, I was driving. <br />
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I stopped my shopping immediately and went to check out. <i>Thank Goodness! No Line!</i> But by the time I got finished checking out.. I couldn't see the numbers on the pin pad to put in my debit card PIN. And I was in Arlington, 35 minutes from home. I got in my car, and drove very slowly and cautiously home. Traffic was light, yet it still took about 55 minutes to get home. I walked, found the bed and collapsed. A heard few text messages had come in my phone. I looked at them, but couldn't read them and the light from the phone was harsh. My eyes burned and the double vision was exhausting. I closed my eyes and mentally checked out for a little while. Visually, my day was over. <br />
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Now I don't say all of this for pity or as an excuse for not showing up for life sometimes. I guess I just feel that someone else has to relate to this. I back out of many things because I know I can't do them alone. Like, driving to Waco, where my son lives. I just don't go that far anymore without someone with me. I can't trust that I will get safely home. My doctors have no explanation and can't determine how to help. I even feel guilty for complaining about it because in my mind I think it could be so much worse. I could be in great pain every day like many people with Chiari. I'm one of the lucky ones.<br />
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Fortunately, I am able to go and do many other things. I can hop on a plane and travel. I am seeing the world in a whole different way now. I can use Uber when driving is precarious. I can Skype with clients and business colleagues. However, what I really miss, what I lack...close personal relationships with people I can see, touch, hug. <br />
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I wonder how many people feel this way? Do you feel isolated? How do you cope? As you see others living their lives without you...as if you were never part of their world...do you wonder if they even notice? <br />
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I'm in many Facebook groups...and I see many bitter and upset people. I try to not engage in much discussion because it seems so many of us are so angry. I see bullying by some people and I see others taking advantage, using false fundraisers even a few drug seekers. Is it the isolation that causes the bitterness? Is it anger? <br />
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So, you can see where a super social person like myself has trouble with isolation. In my world, things have changed. Living with the ups and downs of Chiari combined with an emotionally paralyzing family trauma, my innate desire for relationships and personal connection has become quite problematic. Isolation is not my friend...but has become my constant companion. <br />
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True to my nature..I speak my truth. I reach out to people and say I miss them OR I get upset with them for not reaching out to me.. or to us. I am not afraid to say what I need or that I'm hurt or disappointed... or all of the above. I have learned though to speak it and leave it. Responses are rarely curative and most often hurtful. <br />
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So, the cure for feeling isolated? Perhaps there isn't one. I now believe that people come and go in our lives for a season. They aren't all meant to stay. It's nothing personal. It just is. Accept them as pilgrims on the same journey. The few that stay, they are the blessing. Love them. Cherish them. Celebrate having them every day.<br />
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<br />Michele Collumhttp://www.blogger.com/profile/00640668111778263055noreply@blogger.com1tag:blogger.com,1999:blog-3419656553928863194.post-17815815611777453422015-01-11T11:56:00.001-08:002015-01-11T11:58:03.482-08:00You are NOT Your Body! <div class="separator" style="clear: both; text-align: center;">
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Incredible TED talk that reminds us all that we are NOT our bodies...our diagnosis, our perceived imperfections. Very fitting for each of us. No matter what, there is a hope and a purpose for you!<br />
I would be honored to help you find your unique purpose!<br />
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And, for those of you that have been following me for some time.. YES! it's time for me to get back to those flying lessons!!<br />
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<br />Michele Collumhttp://www.blogger.com/profile/00640668111778263055noreply@blogger.com0tag:blogger.com,1999:blog-3419656553928863194.post-42815902925773015612015-01-10T08:09:00.000-08:002015-01-10T08:09:03.928-08:00That's When Chiari Came To Town<div class="separator" style="clear: both; text-align: center;">
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Lately I find myself writing for hours on end...then posting nothing.<br />
I feel as if in many ways my feelings don't mesh with the reason I started this blog. My purpose has transformed and I've decided to stop avoiding it and make peace with it.<br />
I realized yesterday how much I have really disconnected with the Chiari community(and really all communities and most people) over the past few months. I have been somewhat of a hermit while also being somewhat of a social butterfly. As I review my actions, thoughts, feelings..I try to find balance between the two and I can't.<br />
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Chiari for me has taken a backseat in my life. Not that I am not still deeply affected by this disorder everyday OR that my compassion for my fellow Chiarians has waned. I believe that what has happened is that I've been successfully able to make a shift in thinking that is not centered on daily symptoms. Honestly, daily symptoms are merely an annoyance in my life. Being dizzy= annoying, headache=annoying vision problems=annoying numbness=annoying trouble driving=annoying, and of course, -- having to re-educate a doctor-- double annoying. <br />
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Chiari has become a mosquito that is hummingly flying around my ear. I'm swatting at it, but moving forward... refusing to let it land, sting or bite. I believe this is a good thing. Chiari no longer takes up the entire room or overwhelms me. I'm more positive, more productive, more purposeful.<br />
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I believe this happened by default, as I dove into building my coaching business, then became overwhelmed with family issues, I simply forgot to think about my brain, its function, it's lack of function, etc. We all know memory problems come along with this diagnosis...I'm finding this to be a blessing. In short... I finally quit thinking so much about MYSELF and got outside of my own head. (Pun Intended)<br />
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Last night, a dear friend text me something to the tune of me having a "perfect life". Funny how our lives, that we deem a mess or out of control or anything but <i>perfect</i> can appear so different to those on the outside looking in. After a few laughs with my friend, insisting my life was in shambles, I took a few minutes to write down the positive, the really good things in my life..and guess what--<br />
She was right! My life is perfect. I am <i>exactly</i> where I need to be for this time in my life and I am doing <i>exactly</i> what I need to be doing. I am living out loud, fearlessly, boldly and decisively. I am unapologetic about putting my desires out into this vast universe and standing firm on my non-negotiables. Long gone are the days of "grinning and bearing it". Long gone are the days of saying "Yes" when everything in my spirit is saying "NO!". Long gone are the days of not living my purpose. <br />
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For awhile I thought my purpose was to spread Chiari Awareness. Yes, I educate every person that asks about Chiari and no, I don't mince words or sugar coat it. I also don't wear purple every day or spend all day posting Chiari photos and banners...not that there is anything wrong with EITHER of these activities. The people that do this are called to do it and I whole heartedly applaud you... But this is NOT my purpose. My purpose to to advocate, mentor and coach women (and men) with this disorder back into life, to encourage, build up and transform their lives. THAT is what brings a glow to my cheeks and a spring to my step! We can still live in spite of this thing..We can still excel, produce income and make a mark on this world. We can have not only an ordinary life.. but an EXTRAORDINARY life!!<br />
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I was living an ordinary life before I was diagnosed... but when Chiari came to town... riding in on a radiology report (I'm hearing a theme song from a spaghetti western in the background, while Clint Eastwood rides up with my MRI report in his hand)...That's when my best life truly began! Every experience is a gift, every trip I soak in with a vengeance, every acquaintance I make along the road of this journey ministers more to me than I to them. <br />
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So if you are newly diagnosed, newly decompressed, living in fear, pain, sadness... this is your opportunity to live anew...You can have an extraordinary life! I believe you can and I believe if you will spend some time listing your gifts, your strengths, your desires..then you can find the why of this thing in your life. Be encouraged that it's not all gloom and doom. Be encouraged that there is life after being diagnosed, after brain surgery, after whatever your situation is! Grab on to your life! Get busy living it!<br />
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Michele Collumhttp://www.blogger.com/profile/00640668111778263055noreply@blogger.com4tag:blogger.com,1999:blog-3419656553928863194.post-8959395739986206772015-01-01T16:40:00.002-08:002015-01-08T09:22:43.278-08:00And 2014 Goes Out With A Bang! <div class="separator" style="clear: both; text-align: center;">
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Guess what happened to me last night...<br />
Wait- Let me rephrase that-- Guess what occurred.<br />
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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..<br />
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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!!--<br />
The table/bed/thing I'm laying on collapses. <br />
COLLAPSES!!! <br />
I, of course, hit the floor. I try to catch myself.. which leads to instant muscle spasms in my neck. <br />
My first thought, <i>"oh great, we have New Year's Eve plans-- I'll never be able to go out tonight!!!" </i><br />
My second thought, <i>"I was supposed to wear a hat to this Mad Hatter NYE party-- no way a hat is going on this head tonight."</i><br />
My third thought, "<i>With an attitude like mine...I'm doomed. Stop it, change it, set the intention..and so it is." </i><br />
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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.<br />
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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)<br />
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The thing is... I was laughing, wearing a little pill box hat, wedge booties, dancing with my best friend and husband...I felt NORMAL!<br />
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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. <br />
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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!<br />
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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.<br />
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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. )<br />
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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! <br />
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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!<br />
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Michele Collumhttp://www.blogger.com/profile/00640668111778263055noreply@blogger.com0tag:blogger.com,1999:blog-3419656553928863194.post-41305610015114233052014-12-28T07:05:00.003-08:002015-01-02T05:47:36.202-08:00A Look Ahead at 2015! A few years ago, I read a book named <u>The Shack.</u> In <u>The Shack,</u> there is a struggle for a man to find peace with his young daughter's disappearance. <u>The Shack</u> 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.<br />
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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. <br />
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Now, barely two months after being faced with a horrific family event, I sometimes wish I could find the fictitious cabin from <u>The Shack</u>, 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?<br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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.<br />
<br />
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--<i>that </i>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. <br />
<br />
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.<br />
<br />
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<br />
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. <br />
<br />
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. <br />
<br />
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.<br />
<br />
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.<br />
<br />
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. <br />
<br />
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 <u>The Shack</u> and longing for that refuge.<br />
<br />
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......<br />
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.<br />
<br />
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<br />
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".<br />
<br />
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 <a href="mailto:info@michelecollum.com" target="_blank">email</a> (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!<br />
<br />
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!<br />
<br />
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mox·ie</h2>
<input class="au" style="background-image: url(http://www.merriam-webster.com/styles/default/images/reference/audio-pron-hw.gif); background-position: 0% 0%; border: 0px; cursor: pointer; height: 17px; margin: 0px 10px 4px 4px; padding: 0px; vertical-align: bottom; width: 18px;" title="Listen to the pronunciation of moxie" type="button" /><span style="background-color: #e8ecf5; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px;"> </span><span class="main-fl" style="background-color: #e8ecf5; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px;"><em style="color: #717274; font-size: 12px; font-weight: bold;">noun</em></span><span style="background-color: #e8ecf5; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px;"> </span><span class="pr" style="background-color: #e8ecf5; color: #717274; display: inline; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; margin-left: 10px;">\<span class="unicode" style="background-image: none; font-family: 'lucida sans unicode'; font-size: 0.9em; margin: 0px; padding: 0px;">ˈ</span>mäk-sē\</span><br />
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: the ability to be active</div>
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: courage or determination</div>
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<h2 class="def-header" style="background-image: url(http://www.merriam-webster.com/styles/default/images/reference/hardrule-background.jpg); background-position: 0% 50%; background-repeat: repeat no-repeat; color: #c3857a; font-size: 12px; margin: 20px 0px 10px; padding: 0px;">
<span style="background-color: white; background-position: initial initial; background-repeat: initial initial; padding-right: 15px;">Full Definition of MOXIE</span></h2>
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1</div>
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<span class="ssens"><strong>:</strong> <a href="http://www.merriam-webster.com/dictionary/energy" style="color: #1122cc; font-size: 14px; font-variant: small-caps; text-decoration: none;">energy</a>, <a href="http://www.merriam-webster.com/dictionary/pep" style="color: #1122cc; font-size: 14px; font-variant: small-caps; text-decoration: none;">pep</a></span></div>
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2</div>
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<span class="ssens"><strong>:</strong> <a href="http://www.merriam-webster.com/dictionary/courage" style="color: #1122cc; font-size: 14px; font-variant: small-caps; text-decoration: none;">courage</a>, <a href="http://www.merriam-webster.com/dictionary/determination" style="color: #1122cc; font-size: 14px; font-variant: small-caps; text-decoration: none;">determination</a></span></div>
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3</div>
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<span class="ssens"><strong>:</strong> <a href="http://www.merriam-webster.com/dictionary/know-how" style="color: #1122cc; font-size: 14px; font-variant: small-caps; text-decoration: none;">know-h</a>ow</span><br />
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Are you ready to commit to a New You in 2015? If so, click <a href="https://michelecollum.satoriapp.com/offers/41048-personal-rebellion-project-intensive" target="_blank">here</a> to schedule an Intensive with me at my Introductory rates- Only good for January 2015!<br />
<br />
<br />Michele Collumhttp://www.blogger.com/profile/00640668111778263055noreply@blogger.com0tag:blogger.com,1999:blog-3419656553928863194.post-11736756265584151872014-11-28T19:39:00.002-08:002014-11-28T19:39:49.816-08:00PerspectiveI bet you thought I would never post again...<br />
Truth is.. I didn't think I would. I'm forcing myself to write this post.<br />
Is there an update on my health status? No, not so much. <br />
I did contact my neurosurgeon. He did order an MRI. I did have it done. <br />
I worked the day after my MRI, promising myself to overnight the cd to my neurosurgeon the next day. <br />
That was weeks ago. <br />
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<br />
magnitude of what has happened.<br />
Every day gets a little bit easier and a little bit more difficult.<br />
Every day I find a little more joy and a little more sadness.<br />
At the same time, every day I am grateful to still have my precious daughter.<br />
<br />
<br />
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<br />
I am not including details, as they are not needed and it's better to keep some things vague for everyone's sake. <br />
<br />
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.....<br />
<br />
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.<br />
<br />
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.<br />
<br />
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?<br />
<br />
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.<br />
<br />
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? <br />
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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. <br />
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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.Michele Collumhttp://www.blogger.com/profile/00640668111778263055noreply@blogger.com0tag:blogger.com,1999:blog-3419656553928863194.post-15260565642644756342014-09-28T14:14:00.000-07:002014-09-28T14:29:21.139-07:00Pseudomeningocele Anyone? Okay, so here it is.<br />
I have written and rewritten this post.. trying to sound upbeat and positive..<br />
Which I really am, but everything I write comes across flat and empty.<br />
Here are the facts...and nothing but the facts!<br />
<br />
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! <br />
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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? <br />
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So, I'm open to opinions, advice, etc... post comments, private message me.. what ever-- and yes, this time --<i>IF</i> 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:<br />
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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 <b><i>pseudomeningocele</i></b> 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.<br />
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<span style="color: #252525;"> </span><span style="color: #351c75;">Per Wikipedia: </span></div>
<div style="background-color: white; font-family: sans-serif; font-size: 14px; line-height: 22px; margin-bottom: 0.5em; margin-top: 0.5em;">
<span style="color: #351c75;">A <b>pseudomeningocele (soo doh mi nihn guh seal) </b> is an abnormal collection of <a href="http://en.wikipedia.org/wiki/Cerebrospinal_fluid" style="background-image: none; text-decoration: none;" title="Cerebrospinal fluid">cerebrospinal fluid</a> (CSF) that communicates with the CSF space around the <a href="http://en.wikipedia.org/wiki/Brain" style="background-image: none; text-decoration: none;" title="Brain">brain</a> or <a href="http://en.wikipedia.org/wiki/Spinal_cord" style="background-image: none; text-decoration: none;" title="Spinal cord">spinal cord</a>. In contrast to a <a class="mw-redirect" href="http://en.wikipedia.org/wiki/Meningocele" style="background-image: none; text-decoration: none;" title="Meningocele">meningocele</a>, in which the fluid is surrounded and confined by <a href="http://en.wikipedia.org/wiki/Dura_mater" style="background-image: none; text-decoration: none;" title="Dura mater">dura mater</a>, in a pseudomeningocele, the fluid has no surrounding membrane but is contained in a cavity within the soft tissues.</span></div>
<div style="background-color: white; font-family: sans-serif; font-size: 14px; line-height: 22px; margin-bottom: 0.5em; margin-top: 0.5em;">
<span style="color: #351c75;">Pseudomeningocele may result after <a class="mw-redirect" href="http://en.wikipedia.org/wiki/Brain_surgery" style="background-image: none; text-decoration: none;" title="Brain surgery">brain surgery</a>, <a href="http://en.wikipedia.org/wiki/Vertebral_column" style="background-image: none; text-decoration: none;" title="Vertebral column">spine</a> surgery, or <a href="http://en.wikipedia.org/wiki/Brachial_plexus" style="background-image: none; text-decoration: none;" title="Brachial plexus">brachial plexus</a> <a href="http://en.wikipedia.org/wiki/Avulsion_injury" style="background-image: none; text-decoration: none;" title="Avulsion injury">avulsion injury</a>.</span></div>
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<span style="color: #351c75;">Treatment for pseudomeningocele is conservative or may involve neurosurgical repair.</span></div>
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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. <br />
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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. <br />
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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!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2wQ2kUcsZW-sLbhdNzvxQ7DAoFNsGmyvBzcn-0vGBgfRr6SzgdkQORU0cnU-p8AJdOTkABVzmFLlpVCvZQmJLVcVJjn-_jzfZxD7Vx6FmS-IvgItF0HWMZxpGtJONyswnX5PmtO7DRb8/s1600/IMG_3524.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2wQ2kUcsZW-sLbhdNzvxQ7DAoFNsGmyvBzcn-0vGBgfRr6SzgdkQORU0cnU-p8AJdOTkABVzmFLlpVCvZQmJLVcVJjn-_jzfZxD7Vx6FmS-IvgItF0HWMZxpGtJONyswnX5PmtO7DRb8/s1600/IMG_3524.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bob and I at CCWAA Houston, TX Sept. 2014</td></tr>
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<br />Michele Collumhttp://www.blogger.com/profile/00640668111778263055noreply@blogger.com2tag:blogger.com,1999:blog-3419656553928863194.post-31283705751599090292014-09-09T17:24:00.001-07:002014-09-09T17:24:26.725-07:00You 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!<br />
<br />Michele Collumhttp://www.blogger.com/profile/00640668111778263055noreply@blogger.com0tag:blogger.com,1999:blog-3419656553928863194.post-14107779553380161272014-09-03T16:02:00.001-07:002014-09-03T16:02:12.923-07:00Today 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 <u>Think And Grow Rich</u> . 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:<br />
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<i>"You have been disappointed, you have undergone defeat...., you have felt the great</i><br />
<i> heart within you crushed until it bled. Take courage, for these experiences have </i><br />
<i> tempered the spiritual metal of which you are made--they are assets of incomparable</i><br />
<i> value. Remember, too, that all who succeed in life get off to a bad start, and pass through</i><br />
<i> many heartbreaking struggles before they "arrive." The turning point in the lives of those </i><br />
<i> who succeed usually comes at a moment of some crisis, through which they are introduced </i><br />
<i> to their "other selves." </i><br />
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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.<br />
<i><br /></i>Michele Collumhttp://www.blogger.com/profile/00640668111778263055noreply@blogger.com0tag:blogger.com,1999:blog-3419656553928863194.post-9967688266231520232014-09-03T07:37:00.001-07:002014-09-03T07:37:08.321-07:00What Would You Do?<div class="separator" style="clear: both; text-align: center;">
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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....<br />
Do you feel this way? Do you feel as if you have become unattractive or defective?<br />
Sister of my soul, you are not! <br />
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!<br />
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MicheleMichele Collumhttp://www.blogger.com/profile/00640668111778263055noreply@blogger.com2tag:blogger.com,1999:blog-3419656553928863194.post-8719944491266900182014-08-26T09:05:00.001-07:002014-08-27T09:01:50.460-07:00Inspiration<div class="separator" style="clear: both; text-align: center;">
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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 <i>really </i>our life?" <br />
You know what? This really <i><b>is</b></i> 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.<br />
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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.<br />
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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.<br />
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. <br />
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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! <br />
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My Daughter and I in Paris last week.</div>
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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 <i>"you can't wear those, you will get dizzy and fall over"</i> -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! Michele Collumhttp://www.blogger.com/profile/00640668111778263055noreply@blogger.com3