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Jill Jill

Take a Moment to Feel Alive and Thankful this Holiday Season

HAPPY HOLIDAYS TO ALL OF OUR OUTDOOR MINDSET FRIENDS AND FAMILY!

This year, don't let the craziness of the holidays overtake your life. With family coming into town, gifts to find, things to do, houses to clean, and meals to be made, let's all not forget to cherish the little moments during the holidays that should be the primary meaning of this season:

to give thanks and spend time with those you love, doing the things you love, which hopefully also includes some R&R in the outdoors, as well. 

To help put this in perspective, we have a guest blog from one of our fabulous Outdoor Mindset Guides, Natalie. In her story you'll read below, you'll find that amidst recovery from brain surgery (and you think the holidays are stressful!), Natalie found herself in the middle of a lake in her kayak giving thanks for every second out on the water, feeling alive and thankful for her neurological experience and the new path her life was on. Take this inspiring and amazing story with you this holiday season and give thanks for the many blessings you have in your life, and take on a new appreciation for the little moments we should all be thankful for.

Here she goes: 

The "New Normal for Natalie"

My journey with neurological challenge began in April of 2005 with what the radiologist report said, "accidental find" - a brain tumor in my right anterior temporal lobe, about the size of a golf ball.  It was a  Friday morning.  I was so confused about the information they handed me on the paper that I went home and began to google all the types of tumors and the impacts to the areas of the brain that may be affected by my type of tumor.  What I found was pretty upsetting and I didn't have anyone to talk to about it.  I didn't want to scare my family and yet, I needed emotional support.  Hearing "brain tumor" is a pretty scary thing and the thoughts of "Okay, now what the hell do I do?" are the ones that come first, finding all the information you can and then of course determining the approach with your doctors is the process that isn't so easy to have patience to endure.  I wanted answers quickly and found that in some cases, they simply don't have answers to provide.  Plus, everyone and every situation is different.  I was thankful cancer was ruled out and still, I had a tumor that caused "mass effect" in my head.

My approach was to rule out some of the serious side affects that "may" happen if we waited and watched my tumor for a while.  My wonderful team of doctors (really love them) admitted that they really didn't know much about my type of tumor and given, that it represented less than 1% of all intercranial masses, they were very rare.  I truly appreciated their direct, honest feedback and the amount of time they spent with me to understand what I was facing.

With MRI's planned every six months (unless new symptoms appeared) - we "watched" my tumor.  We watched it slowly grow.  I knew it was growing given the increase in pain I had been experiencing from the intercranial pressure, it's similar to the symptoms of meningitis.  I could deal with those and often wondered what a "regular" headache would feel like.  My pain tolerance began to increase and dealing with the pain became routine.  All this while working full time in a management executive role - and being a single mom to 2 wonderful boys.

We watched it...  In the mean time - I continued to do the things I loved outdoors; fly fishing, kayaking, hiking, water/snow skiing, boating,   Occasionally, I would be debilitated with the pain and be in bed for a day or two but I was able to get back into the swing of things quickly.  I rarely missed a day of work and learned to push through the pain or "nut up" as my sons would say.  ;-)

In the fall of 2008 I started to feel different.  The painful "headaches" were getting more frequent, lasted longer and I became WAY more sensitive to light and noise.  I also noticed my sleep was far more interrupted.

On December 19th, 2008 I experienced my first partial complex seizure.  Everything changed on that day.  I was alone, had just come down the stairs of my home when out of blue, with no warning my head/neck were rigid and my chin was close to my left shoulder, my left arm was rigid and I couldn't move it.  I felt my way to the bathroom with my right hand, sat down and waited.  The seizure lasted about 60 seconds but seemed much longer.  I was confused - I didn't know what to do.  In my post seizure funk, I drove to work.

It wasn't until I was at work for a while that I realized what I had just been through.  So, I went back home and called my doctors.  I was immediately put on Kepra and a few other drugs.  The MRI revealed my tumor had grown to about the size of an egg and surgery was scheduled.  I asked for the surgery to be in March of 2009 so that I had time to get my "house" in order.  The list of risks from the surgery was long.  After you read "death" - all the other ones seem like pretty good outcomes.

The seizure clinic revealed I was having partial complex seizures through the night as well.  No wonder I couldn't sleep.  And, that the cause of the bigger seizure was the growth of the tumor.

My surgeons did an amazing job with the craniotomy.  Prior to the surgery they said there was a 50% chance my tumor would come back.  After the surgery, they felt it was less than that and had hope I wouldn't need surgical intervention in the future.  But again, we're "watching" it.

I had many challenges to face before, during and after the surgery.  The most important message I think I can share is to learn to accept there will be a "New Normal" for you when you're faced with a neurological challenge.  Folks would ask me if I was 100% - back to normal.  I think it took me a while to realize that through such adversity and challenge I could not help but be changed as a person.  After my recovery, I was more grateful for everything from the smallest thing like birds visiting my bird feeders to being able to hold my sons.  I looked at everything differently.  My New Normal was a gift.

This picture of me in my "cloud" kayak was taken about 9 weeks after my surgery.  It was the first outdoor experience I'd been able to have after my surgery.  It was a turning point for me in my recovery.  I had many weeks of confusion, fear, worry and stress.  Because my tumor was pushing on my emotion center - with so much pressure that it actually also thinned the skull wall - I felt confused a lot and I suffered short term memory loss.  I would often wonder "Am I feeling the right thing, did I say the right thing, was I empathic, did I even know how to be empathetic any more....... etc."  But I couldn't find the words to share that with anyone.  I would express that frustration in other ways towards those that I loved.  Like complaining that there were no pictures of my recovery.  What that really meant was - I need some evidence of what happened, I have no memory of it.  But again, I couldn't find the words to say that...

Being on the lake that ONE day in my kayak and my belly boat fishing was the first time after my surgery where I didn't worry.  I didn't feel like a victim of a brain tumor.  I was ALIVE.  I savored the warmth of the sun on my face, I prayed to God and gave my thanks for getting me through my challenge, I dropped my hand in the water and appreciated that my hands worked, I cried at the beauty of the calm mountain lake water and each fish I caught (and released) I would kiss them and thank them for biting my fly.  I didn't worry about how to tie my flies or how to cast - it came naturally to me and I was grateful for every single second...

That trip fly fishing was by far the biggest catalyst in my healing.  After that trip, my short term memory challenges began to subside.  I had renewed hope and strength to fight.  I was able to get off most of the meds by June and went back to work.  I traveled internationally to Sweden in mid June and kayaked there as well.

Being outdoors, in nature - especially around water and then doing the things that I used to love prior to my surgery helped me realize that I am settling into my "New Normal" and it's pretty damn cool to come out the other side of all this as a survivor.

I was introduced to Kyle, from Outdoor Mindset, by my surgeon - we have the same team of doctors.  I am honored to be part of the Outdoor Mindset team and cannot express enough gratefulness for a group like this existing.  Being a Guide also helps me by being able to "give back" or "pay it forward" - by sharing my experience. After all is said and done - when you connect with another person facing a neurological challenge, no matter where they are in the process - you GET IT.  There are no words that can be expressed to share what that connection is like - it's deep, powerful and a feeling of relief comes over you that you don't have to try and explain what is going on in your head.  It's SO helpful to have someone to talk to - someone who has been there.  I hope I can be that "someone" for many folks and I would feel blessed to be next to you in your journey.

~Outdoor Mindset Guide, Natalie

I don't think any other words are needed.

Live BIG this Holiday Season and thank you for everything you do,

Jill

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Jill Jill

Play Your Cards Right- Like Channing

Today we have a special guest blog from one of the most inspiring, awesome almost-18 year olds I've ever met! Channing, who lives in beautiful Basalt, Colorado, contacted us at

Outdoor Mindset

about some ways to get involved and help spread the good word about Outdoor Mindset. We thought the perfect Step 1 would be sharing her amazing story of LIVING BIG with epilepsy and continuing to get outdoors as a form of inspiration and solace in her life.

Here's a little background on Channing before she jumps in: She was born and raised in Aspen, her favorite colors are

orange

and

purple

, loves almost all things outdoors, and is interning with Glenwood Vet Clinic. Oh yeah, and she's a killer when it comes to Texas Hold'em!

Here is what she has to say to you all:

"Everyone is dealt a bad hand in life. It’s what you do with that hand that makes one so unique. This can be anywhere from being rich to divorce, epilepsy to quadriplegic, homeless to starving. Everything in life may not happen for a reason, but without the bad in life, we cannot experience the good. I graduated high school on the 28th, so I am no expert, but I do know, I would not be the person I am today without it.

My dreams about becoming a veterinarian technician-possible vet, an EMT, and ski coach came earlier than I thought. I started riding horses when I was five years old and started competing in hunters at the age of seven. However, three years later I was diagnosed with epilepsy after having multiple tonic clonics. My passion, what my life revolved around seemed to be gone. Epilepsy didn’t take anything away from me. My family and I, instead, created a solution. We got a titanium helmet, and in the event I fall off, we got an inflatable air vest that protects not only my head and neck, but all of my internal organs. My first epileptologist didn’t like the idea of an epileptic riding horses and thought I should have collected stamps. 1) Every horseback rider falls off, 2) horses have an amazing connection and sense with their rider and in the end will come to a halt if they sense something is wrong… I’ve had two tonic clonic seizures on my horse and as well myoclonic jerks, and 3) I’m not the only one falling off their horse, it could happen to anybody, maybe people I ride with will have a seizure on their horse unexpectedly out of the blue. Because of my horsing habit, I believe in animal therapy so much. Now I jump four feet and compete against professionals in more advanced shows that go on for two weeks all around Colorado. I have a crazy dream of going to the Olympics.

I work for the manager at the ranch (Cozy Point Ranch) I board my horse at. There I have learned not only about good horsemanship, but how to care for horses if they are injured. I found my interest in veterinarian medicine there when we were caring for a horse that had fell down a cliff and its owner asked Cozy Point Ranch help take care of him. The manager asked me to clean its wounds out, wrap him, put gauze on his back, and scrape the scabs off that I could. That’s where I started out. Today I do ride along's with one of our local vet clinics. Now I get to do post mortems on cows, castrate calves, and do pre purchases on horses, look for arthritis in horses’ legs, and much more hands on.

I’ve always loved blood and guts, but twelve years of medical school wasn’t for me. I was able to take a first responder course and get certified in October of 2010. Since then I follow up with once a month refresher medical classes through the fire department. This fall I hope to get my EMT.

Skiing has been a large part of my life living in the mountains. I knew how to ski before I knew how to walk. Later I joined the freestyle program at a ski club we have. I started competing in small competitions around Colorado. When I stopped competing because it wasn’t for me, the director of the program asked if I wanted to be the club’s first coach in training. Three years later I was an assistant coach, and next thing I knew, I had my own group as a ski coach. I wear climbing harness with no legs, connected to a daisy chain with a carabineer on the chair lift. It acts like a seat belt in the event I would have a seizure on the chair, I wouldn’t fall off. The harness goes through the belt loops on my ski pants, I throw the daisy chain over the back of the chair and under, and then the carabineer connects to the harness. The group I teach knows how it works. At the beginning of each year, I tell the kids what epilepsy is, and what to do in the event I have a seizure. I give a lecture to the parents at the beginning of each year as well.

This past winter I did an internship with ski patrol. I loved how they took me out of bounds, under closed ropes, showed me avalanche areas, and did training with me. They taught me how to drive a toboggan and showed me the ropes.

It’s not what cards you are dealt; it’s what you do with the cards dealt to you.

You can find a solution, or become isolated. But you only live once, and you don’t want to ruin all the potential you have.

“The idea being to accept fully what you are.”

~ Mattox

Outdoor Mindset

is a great example of living life to its fullest despite having a neurological disorder. Still using a safe environment, this organization is just one of many that shows you can still lead an active lifestyle, pursue your dreams, and be an everyday person, while living with epilepsy or another neurological dis-order. It gives those who are isolated a chance to be “normal”, whatever “normal” means… Don’t waste talent or any goal for that matter, because I guarantee there is a solution that allows you to keep your hopes up.

- Channing Seideman, almost-18 (yes, that's right, just 18)

Now who wants to talk about limits? Let this story remind us that there are no limits in life, just obstacles we need to work around and dominate.

Learn more about Channing’s continued story and success in overcoming her epilepsy here.

Outdoor Mindset

can be there to help with this journey every step of the way.

Over and Out,

j

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Heads up doc, I’m ready to go!

More than a year has passed since the idea of Outdoor Mindset was tossed around by founder Kyle Martin. It has been a privilege and a lot of fun to be a part of the journey to turn an inspirational idea into a functioning organization. The folks who have made it all happen are a special crew, and I feel lucky to be part of the team behind the vision! All the hard work is paying off and Outdoor Mindset is on its way to affecting lives everywhere with its new Guide Program!

My participation and belief in the vision and mission goes way beyond fulfilling a personal philanthropic ideal. I was diagnosed with epilepsy when I was eleven. My family figured it out when I fell off a horse as a kid. My dad is a doc, and he was pretty sure he just witnessed a seizure. When they took me to the neurologist and ran some tests, sure enough, I was diagnosed epileptic. At the time, the diagnosis didn’t really affect me. I went on living my life, doing all sorts of crazy stuff on bikes, skateboards, snowboards, and playing hockey with no limitations.

Having epilepsy never had significant negative effects on my life since the majority of my seizures happen while sleeping. I won’t lie to you. The ones I do have while awake are pretty embarrassing. Particularly when I’m on the ice during a hockey game, drop in front of a crowd unexpectedly, slide across the ice shaking, and slam hard into the boards! Well, I guess for spectators it could be rather entertaining.

My epilepsy has never been controlled. I have failed medication after medication. Weekly seizures have been a part of my life for the past twenty-seven years. About two years ago I began to notice some changes in the presentation of my seizures and things that were WAY out of the ordinary for me. My memory began to fail, I had trouble concentrating, and I started having anxiety and panic attacks. Something was definitely up! I was referred to a team of specialists in Denver, CO. They put me on a ‘cocktail’ of multiple meds, but the seizures persisted. Then they mentioned brain surgery as the best next option. They wanted to take out a part of my brain. Now that freaked me out!!

After a long indecisive contemplation of which way to move forward, I opted to have the surgery. To my surprise, a few board members at Outdoor Mindset knew someone who went through the same situation I am facing now. Her name is Diane Van Deren and she had a temporal lobectomy ten years ago. Diane is currently a professional adventure athlete sponsored by The North Face. Now fully recovered, she travels the world and competes among an elite field of endurance athletes. I can't tell you how valuable her friendship, advocacy, and first hand experience has meant to me over these past several months. Diane's support, spirit and determination are an inspiration to me. She shoots me straight from her own experience in what to expect from the surgery, what to anticipate throughout the recovery process, and how it has impacted her quality of life.

The new Guide Program that Outdoor Mindset is launching is the real deal! Diane’s and my relationship is a testament to what a difference it makes to have support from someone who knows the ropes of neurological diagnosis.

Diane, Kyle, and I are headed on a hut trip in the central Rocky Mountains of CO for a day of backcountry skiing the night before I head into the hospital. I figure after that I can walk through those front doors with an ear-to-ear grin, goggle tan, and powder burned face that says ‘BRING IT ON’! Once it all goes down I hope to become a Guide myself, and offer my own experience to someone who needs support. Check out Outdoor Mindset and our Guide program - we’re gonna be big!
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Dominatin' Diagnosis

First off, let me say this organization rocks... I've never see anything like it in the neuro-support world. Most stuff out there is WAY too clinical, depressing, and just no fun. This organization is all about living big, despite pesky neuro baggage!

My friend Kyle contacted me a few months ago, asking me if I wanted to grab a cup of coffee. Being a full on 'Joe addict', I naturally took him up on it. That's when he threw out his situation (you all know the story). Knowing Kyle and his 'get at it' dogma, he wasn't gonna let this neuro diagnosis sway his spirit. After an in depth conversation, with ideas flowing, the seeds of Outdoor Mindset were planted.

Kyle thought I might be interested since I was in the non-profit management world in my previous life. He also knew I had uncontrolled epilepsy.

Long story short (bear with me), when I was twelve, I dropped in front of my friend while on summer vacation, and freaked him out pretty good. Turns out it was a grand mal seizure. Lots of tests, and visits with a bald neuro doc later, I was tagged epileptic. Hmm, epilepsy. That's interesting, I thought. So, I got put on some meds and life went on as normal. I eventually grew out of the spastic grand mals, and have had partial complex seizures ever since. I'm now 38.

Thankfully, 95% of my stuff goes on in my sleep. The other 5% have occurred anywhere. On the ice during hockey games, on a glacier in Alaska, or watching TV with friends. They have occurred pretty regularly for the past 26 years. My stance on my diagnosis has always been 'I have epilepsy, no big deal'. Over the years, docs have tried several meds to control my seizures, but they're persistent little buggers. I've failed three meds, and am now on a high dose 'cocktail' of two newer meds- still having weekly seizures. None the less, I've been an avid athlete all my life, and have been adventuring in the mountains on all sorts of toys since 1996.

This status quo changed a bit this past fall when my doc leveled with me. For the first time, the word 'brain surgery' reared its ugly head!

Stay tuned...
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