Wednesday, November 26, 2014

you CAN sit with me---No more mean girls

I am writing this based on a risky decision I made yesterday.  Now it was one that was thought out, discussed, meditated on, etc, as are most of my decisions; and I knew there would be backlash) but one thing I wasn't expecting was people being just plain old mean.

It got me thinking......& no I don't regret my decision of this:

In a world where people pay more attention to people's booties, color of our skin, size, how much photo shop, etc we have lost focus on what is important. I would like to CHALLENGE everyone to put the focus back to what is important. So clearly if it takes a little T & A to accomplish this, so let's have some fun with this.  I am challenging everyone to take a sexy photo of yourself for your cause. This comes with a twist, Steve Dezember II, Sarah Spicer, Matthew Moore, & Jeff Kaplan & I will be choosing someone who did this contest best on Facebook & Instagram & the winner gets: A HOPE for Steve DVD, a DRIVE Project painting, a Hope for Steve tshirt, bracelet, car decal, & a Hope Mala. Yep that's a lot. 

ALSO we will be making a calendar of the best 12 & all proceeds from calendar sales will go to

So here is what to do. 

Take a photo that makes you feel sexy & have fun with it, talk about your cause & why it's important & where people can help. Hashtag the following:#Sexyforyourcause #HopeforSteve (so we can see & choose the winners) &#ENDALS (because clearly that's the reason this all is starting). We don't want to limit this to ALS as there are so many causes & we want everyone to be able to speak about theirs. Share on your social medias & challenge 3-as many of your friends as you want.

So mine is obviously ALS. ALS has affected my husband Steve & within 3 years of diagnosis he is fully paralyzed, vent dependent, gets fed via IV, & communicates with his eyes as he has lost his voice. There is hardly a more frightening or devastating prognosis. The vast majority of patients die within two to five years of any symptom of the disease. ALS attacks your body killing your motor neurons and muscle. Since Steve's diagnosis in 2011, we have made it our mission to spread awareness about this disease which affects roughly 30,000 Americans. Through social media, our website, and the documentary, we have tried our best to show what an ALS patient goes through on a daily basis.
Photo: Jeff Kaplan
Editor: Retoucher Bianca Carosio
Styling: Steve Dezember II
Makeup: Candice Holloway

It made me think of how "meanness" has become socially acceptable.  I am all for people being authentic and speaking out for what they believe in, but do you really have to put people down to express your opinion?  Think about it?  How many things have happened this year and where you have seen so many mean things written while people share their opinions. 

When did we let this be okay?  Is it that people feel like they can hide behind social media or their blogs etc? Or has humanity really become meaner?  I believe in the good, I see so many amazing things happen on a daily basis, in fact this photo that was a bit of an envelope push, it was 95% positive feedback, so I hate to even address the negative.  BUT it just bothers me that anyone feels they should be mean to ANYONE.

We have to stop it, only we can.   As you are typing your message or comment remember you have plenty of time to think about your response & edit it before hitting send.  If you so strongly disagree & feel disappointed or angry maybe take a step back.  If expressing your opinion is so important after a few hours then do so but there is no reason to pull a mean girls.

I say we put a stop to this mean girl mentality. I say you CAN sit with me.  NO matter what color your skin is, or your religion, or you opinions of me or what I choose to do.  You can sit with me & I will show you love.  & I BEG of all of you to please show more kindness to one another.  We don't have to agree but we also don't have to be enemies.

Love really is the answer.

PS Yes for those who asked if I'm that desperate?  I am. My husband is dying.  Everyday ALS robs a little more of him from me & our life.  Every day he needs a little more sleep and feels a little more weak.  Everyday he faces another uphill challenge with courage. So yes, I am desperate. I am desperate people finally stand up for what is important because the whole world is desperate right now.  We need our voices & we need them to be speaking for the greater good.

Tuesday, October 28, 2014

Chaotic minds lead to beautiful messes

Those of  who have been following me, know by now, I like to explore who I am & I like to be creative in one form or another.  As I'm expressing creativity I'm experimenting with all things; painting, drawing, jewelry, writing, etc.  The more I have continued to learn about myself and how and why I am who I am + the combination of exploring creatively, I've really grown a life changing understanding of myself.  

My mind is chaotic, wild, it' doesn't stay in lines, or even know how to have them.  It's random, it thinks of something different every minute of the day.  It's loud, colorful, visual, & evolving.  I used to want to paint like I was an organized thinker.  I'm not.  Once I started understanding, "why do I have such a hard time being organized", or "working in a normal every day is the same thing job doesn't work", or "some days I want to write, some days I want to draw, some days paint, some clean; but if I don't want to do one of those things a day and I try it doesn't work."  My mind doesn't work with always doing the same thing, it's pulled by what energy I have that day.  My mind doesn't actually run the show here, my heart does.  

Realizing this was as hard to wrap my head around as it is to write about.  However, knowing that when I'm feeling like I want to paint and learning to paint how my brain works, I believe I have found my place.  The more I find my place the more the creative outlets start to find there place too.  

So today, after a small painting hiatus (between remodeling our room, Steve's birthday, the slight obsession with mala making, etc) I painted the 4 happiest, feel good, powerful energy, favorite paintings I've ever painted.  It was like my brain & heart were showing up on the canvas, once I stopped putting myself in lines.  

Wanted to share & encourage y'all to keep exploring yourself and you never know what you'll discover. 

Thursday, October 16, 2014

Hope Malas

As y'all have seen me blow up social media recently, I have become slightly intoxicated (sounds better than obsessed right :)) with making mala necklaces. They have special meaning aside from the initial meaning behind a mala and I wanted to share it with y'all.  

For those who aren't familiar with the story behind the mala.  These beads are used in many spiritual practices to help with prayer or meditation.  There are 108 beads that help you count while you are either repeating a mantra, a chant, or a prayer.  I find malas very helpful to use while I meditate, to help me focus and stay in the moment, then I find wearing that mala through the day to be a reminder to breathe and remain present and positive.  Often when I'm wearing a mala if I find myself stressed out, I instantly begin to count the beads which instantly grounds me and helps me shake off whatever stress was creeping in.   

Now obviously depending on the religion there are different meanings behind the beads or seeds used.  I have enjoyed learning about what particular value each different seed, rock, gem have to them and learning about there elements.  It's been a nice way for me to go deeper with my meditation as I learn but also making the necklaces themselves make me happy.  Often Steve wants me to sit with him and the malas are a great way for me to be able to be present with him but also be creating.  I am a very stir crazy personality so these ground me. 

My Hope Malas are all made with love and different intentions.  I want them to be able to be used by anyone no matter what your religious or spiritual beliefs to help you have the best most peaceful life possible.  If you wear them because you think they are pretty & they make you feel good then great!  If you want them to help with a meditation or a chant or a prayer great!  I always encourage people to do what is right for them and what feels right for them, and my malas are no different.  

So as of now 2 stores are selling them & I have some on Etsy.  I don't like the feel of Etsy so I am currently working on a website, but if you want a mala email or message me.  :) I can either create you something that I'm feeling that day, a certain color for you, or even use certain seeds or beads depending on what you feel you need.  

Thank y'all for constantly surrounding me with so much love & acceptance.  <3 

Sunday, September 28, 2014

Draw your own circle

I'm blessed with so many enlightened and intelligent people in my life, who inspire deep thought with every conversation.  Recently I've had conversations with several people about feeling guilt when I am put off by someone and their energy.  

See, my whole life I have opened myself up to everybody.  Anyone want it, sure you can come in my circle.  I even let them stay well past their time.  Obviously I look at everyone who is in my life as a lesson, with one of the most important being, it's okay to not allow everyone in or make people leave my circle.  It's okay if I trust my instincts telling me something about this person doesn't sit well with me.  It's okay.  You don't have to allow everyone in.  Sigh.  That feels good. :) 

It's not like I am mean to these people; unless someone brings out the warrior, I tend to be nice to everyone.  However, like the Nahko and Medicine For the People, song, Warrior People, ..."I will learn to be peaceful but keep my knife at my side, I will pray for compassion but if war comes to my door you know I'll be blasting warrior mentality"...but I digress. :)  I will try my best to show these people love and light and keep my distant.  So i'm human and obviously not perfect, so yes sometimes I judge the hell out of people & allow them to annoy me.  I own it & am working on it. :)  

Fall is the best time to shed what isn't serving us, like the trees there leaves. So remember it's your circle, make it your own. 

Thursday, September 18, 2014

Kindred spirits

I remember as a child being excited to visit my grandma's booth at the arts festival (or store).  I thought she was the coolest woman alive.  Turquoise wearing, festival working, sassy, craft making gem. I've always felt drawn towards creativity but tried to fit in the left brain mold.  (I've talked about this before).  

Recently since starting to make crafts, I feel a huge connection to my grandma.  I find myself wanting to make things she used to make (some I didn't even remember), & I feel her smiling at me while I make them.  When I started painting/making things it was just a creative way to deal with all the energy I have.  It has now become a way to share my energy with others.  

My grandmother's second husband passed away from ALS.  So maybe I feel connected to her at this time because of that, or because I'm following my passions like she always wanted.  Either way I'm glad to feel her energy.  I recently started making necklaces, which is my current favorite thing to do.  I was unaware my grandma made some very similar to mine.  :)

Follow the pull because you never know who might be behind it.  

In other news the DVDs are here. If you ordered one be on the look out.  Please share your thoughts & take photos of you watching.  We can't wait to hear what y'all think.  

Still need to order: click here

Monday, September 15, 2014

This is my space, that's yours. Namaste :)

Steve & I try to be open, while trying to remain positive in all things we put out there.  It's not always easy because somedays ALS sucks, our attitudes sucks, or our stir crazy wanderlust ways itch at us & we get agitated at the situation.  Some days we want to complain.  We want to be authentic and transparent in our lives (not just for others but for us), and we do embrace our feelings of "stand still" but we still choose not to put a complaint into the universe.  Complaining only left us feeling worse. We learned that we do better by accepting our feelings, and working on refocusing our energy to positive.  

I have been working on "protecting my space" and learning not to allow other people's energy to influence me negatively; because for as long as I can remember, I found myself attaching to other peoples energy, and carrying it as my own.  As I've been working on letting that go, I realized that also meant I had to accept people where they are, even if that means accepting their complaining. 

It is not my energy that is being put out there in a complaint, so why am I attaching to it?  If someone needs to complain to feel better, why do I need to even acknowledge it?  I am responsible for myself and only myself.  Other people's energy is theirs.  It is a simple concept that has taken a lot of work for me to acknowledge, accept, and learn how to separate.  

If I find myself carrying someone else's energy I acknowledging it, and then that's when I take space to do yoga, mediate, go stand bare food on the earth, smudge, read, write, paint, craft, etc.  I'm so blessed to have a husband who accepts me and encourages me to be the best version of me, who shares the same values, and who understands when I need to do meditation work.  I'm also so thankful to have such amazing, supportive, & understanding people in my life who accept me for all my quirks and shine so much love on me! I'm thankful for the continued lessons I'm presented with and for all the teachers that pop up along the way.  


Sunday, August 31, 2014

I am content not complacent

Today Steve & I had the honor to attend North Point Church (we usually watch online) & hear them use Steve's story in their message. 

The message was so powerful it inspired some deep reflection. Andy Stanely is in the middle of a series called In the meantime, talking about, "What you do, when you are faced with a situation that you cannot change." They used Steve's shining attitude and spirit while facing ALS as inspiration to help others be able to have the same faith and courage facing their own trials. Andy is so well spoken and the message is very powerful I highly encourage y'all to watch it. 

It made me think a lot about the idea of contentment and how it can be confused with complacence.

I am one that always wants to do more, see more, learn more, experience more, love more, live more, more, more, more, more... However, I am very content with my life. In fact more than content, I am grateful. The bible verses that Andy used in his message really hit home, Philippians 4:12 says, "I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want." I have known what it was like to be hungry and at that time I did struggle with being content in life, and it's not because I didn't have the money, it was because I was so complacent. I didn't even think about bettering my life. I learned through this battle with Steve how being content with your life no matter what is thrown at you is the only way to accomplish inner peace. It's a choice to be content and one that takes learning. It's a lesson some may never learn, and I'm forever grateful I have. My hope is that people don't have to go through something life altering to learn it.

I want to stress one thing, being content with life does not mean being complacent. It is important to always strive to be the best version of yourself as you can. It's something I truly believe that needs to be worked on daily. Even if it's as simple as, "I'm going to remember to be more thankful today," or as far as "I'm going to show up to life today and live as full of a life as possible, and do my best to do that every single day."

Knowing how to truly be content no matter what life throws your way, while striving to continue to be your best is, in my mind, the key to a peaceful & fulfilled life.

I end with one thought, "I can do all this through him who gives me strength." Philippians 4:13
For your listening pleasure. :)

Saturday, August 30, 2014

Manifest Reality

I recently took myself out of the box I used to live in, I simply realized I don't fit or belong in a box. I went to college majored in one thing, went to grad school got more specialized, worked in the field for 5 years. I was an excellent therapist when I could actually be in the moment, I however, actually never really liked it. No really, I would be able to accomplish break throughs with some and completely fail at others & they both bothered me just the same.  I carry people's emotions easily and I hadn't learned how to handle that yet. I was also bored. Genuinely with the job which you can tell because I had 5 different jobs in 5 years. It was more than just testing the waters, it was please tell me I don't hate all that I'm good at (so I thought) moment.  I am of course led to help others, so what better way than a therapist? 

Well guess what? I don't want just one title. I am a little about a lot person who was trying to live in a lot about a little world. I don't want to do one thing for the rest of my life. It's very unlike me. I want to do a lot of things with my life. My degree will always play a huge part into my future journeys just as it does currently, but I'm not just one thing. I am many thing.  I will never regret going to school even if I am not a working therapist those 4 years undergrad & 3 grad taught me so much more than just psychology.  

I am good at many things.  Once I could let go of those boxes of expectation I was able to realize I am good at several things if I just stay true to who I am.

You have find what feels most authentic and do it. I feel best taking care of Steve, being able to feel empowered and loved by someone and being able to take care of them in return. I enjoy painting, it feels right to me. Once I removed the box of only being a good painter if you can paint a certain way.  Art is your own expression.  If you receive happiness from doing something, do it, that's art.  I enjoy writing, and seeing myself grow as a writer. I enjoy being a part of films; anything from being in front of the camera, behind the camera, directing, etc.  I love yoga and meditating.  I feel pulled to teach everyone around me about it.  I am many things. So are you. 

Once you open your mind to the possibility, things will change. They will suddenly make sense & you will feel great.  When you have your intentions clear; work hard, believe in it, believe in you, & pay attention, the universe will be presenting many great opportunities to help you manifest those dreams.  

Started an Etsy page to sell some art
Our story from filming live with HLN

Friday, August 22, 2014

10 things you can learn from a person with ALS

I can't think of anything to write about other than ALS right now and currently it's in a good way.  Because Steve & I are over the moon happy with all this awareness I decided to blog on ALS.  Because remember we want to keep it trendy.  I have learned so much from all of the ALS patents in my life but obviously the most of this is from Steve himself.  So here are 10 things YOU can learn from an ALS patient.  There are hundreds but I know people stop paying attention after 10 usually so there's that. :) (Guilty!) 

1. Don't complain.  I get it complaining is supposed to help you "let it go" (blog coming on this tomorrow) because it doesn't actually.  When you realize that complaining actually doesn't help you at all, in fact it makes a crummy situation feel even crummier.  You have too much to be thankful for to ever complain.  All of you do & yes that includes Steve & ALS patients.  
2.  When given a crappy situation make it an awesome situations.  All of us are given situations and it's always our choices how to handle it.  If an ALS patient can be given a TERMINAL illness and still make sure they stay happy and live full lives so can ALL OF YOU.  You can, you just have to do it. 
3. When someone tells you, "There's no solution," you make your own.  ALS patients are faced with so many days and things that most find unsolvable, hence the no cure or treatment thing.  However, every ALS patient I have come across finds their own solution.  They find tricks to be able to communicate after they loose their voice, they find ways to get comfortable even when they are slowly loosing muscle control, having constant spasms, and excruciating pain, & they still find ways to fight despite their bodies giving up on them. 
4.  If someone tells you, "You are going to die & this is the sequence it is going to happen in," do NOT listen to them.  Part of why Steve is still alive is that he is determined to live until he is done, not the way ALS says it will.  He has outlived a lot of doctors expectations & constantly amazes people with his determination and fight.  I can say the same for lots of other pALS out there. 
5.  Be nice.  Seriously JUST BE NICE.  You never know when your words could be the last things someone hears.  I was lecturing Steve, the night before he coded the first time.  They told me he probably wasn't going to make it. The thought that my last words to him were, "Gosh stop being so damn stubborn and do what we ask you to," devastated me.  I was thankfully given another chance to tell steve how damn proud I am of him, and that I always want the best for him so sometimes I may have to be hard on him, but that it is only because I love him.  The nice way to say what you have to say.  
6.   Be with your loved ones.  Make the effort to see the ones you love, schedule visits, call, text, write a letter, Facebook; whatever way you reach out---talk to your loved ones, tell them you love them, & spend time with them.  As much as you can.  You never know when it could be their last day.  
7.  Take care of your head.  Obviously not all ALS cases are trauma induced, but Steve's we believe is. Looking at athletes that obtained numerous head injuries and the high presence of motor neuron diseases, just seriously take care of your head.
8. Take care of yourself.  Your health is much too valuable to take for granted.  If you can avoid a health problem with a lifestyle choice---do it.  There are some not given that choice.  Let food be thy medicine and medicine be thy food. 
9.  Do a lot of awesome shit.  Sorry no other way to say it.  Go on adventures, go live your dreams, see the world, meet new people, go to that show, paint that painting, have that glass of wine with your girlfriends and have baggy eyes the next day.  Live your life & live it full.  
10.   Your mind is a powerful tool.  ALS patients can always let the grim facts of ALS get them down, but I can say I have spent time with a lot of pALS & I am impressed at their ability to just choose to be happy.  I'm amazed at even when I see an ALS patient have a discouraged moment, it doesn't last long. They have the amazing ability to control their mind & it's a gift I think everyone needs to learn.  

Basically to quote Steve Gleason, "Awesome ain't easy." 

Monday, August 18, 2014

Keep ALS Trendy

By now you have all seen the Ice Bucket Challenge that is viral right?  You probably know it's for ALS right?  Well, maybe.

 Now let me start out  with 5 reasons this #icebucketchallenge to #strikeoutALS has been successful :

1. ALS has never made national news like this before, ever. (Let that sink in)
2. People are paying attention. Like really paying attention. 
3. It's trending to #keeptheiceinthefreezer where people are now donating to ALS. 
4. ALS patients can see and feel the love from everyone. Friends, friends of friends, family, friends families, strangers, etc. It's been amazing to see how many people want to make a video and or donation in honor of Steve.
5. It has proof that when we all come together for a common cause we can move mountains. We accomplished this together. Without each of you who participated this wouldn't be possible. We ARE capable to work together. Even those who think the challenge itself is silly, end up donating, they care about the cause, we ALL AGREE on this : Something needs done about ALS. There shouldn't be so many AMAZING people having to fight for their lives everyday. We are a capable society & this is our chance to make a movement towards good! 

Here's where I think we should go now.  Make more videos about ALS, what it does, show people with ALS, their families, talk about symptoms, talk about how people can help; etc.  Get creative & make sure people understand why it isn't just dumping ice.  Also, donations.  Donate to research, we recommend ALS TDI.  Donate to patients with ALS, guardian angels, etc.  Anyone who has donated us with the #keeptheiceinthefreezer or the #icebucketchallenge we will be donating half of those to ALS TDI.  Let's raise the money needed to fund the research to find the cure!  I am working on a new video soon! 

In efforts of continuing the awareness & research, I want to remind you from a portion of our DVD sales go to ALS TDI.  As well as a portion of our Drive paintings.  

Thank you to everyone who has talked about ALS, talked about HOPEforSteve, shared our story, a video, a personal story, called out powerful people, donated money, etc.  Because of you we have finally gotten the attention ALS has needed for hundreds of years.  This is history you are witnessing.  Thank ALL of you! HOPEforSteve on

Wednesday, August 6, 2014

The year I turn 30 truth

The year you turn 30 brings a lot of things, one is cellulite, but the more important is the feelings of "I didn't live up to this expectation I unrealistically set for myself."  Let's be honest, we all do it.  By the time I'm 30 I will have this, I will have done that, etc.  Let me tell you if you are reading this and have years before you turn 30---thank me now for what you are about to read.  Seriously.

Do NOT set must haves in life.  Yes set goals.  Goals and must haves actually are on a very thin line but are NOT the same thing. 

In my mind, by the time I was 30 I was going to have children because everyone used to say you should have them by then.  I was going to have my student loans half way paid off.  I have my masters, and owe a lot of money.   I wanted to have been to Italy.  I was supposed to own a house, have a fancy real job where I was putting into my 401k every paycheck, on and on. 

Well guess what.  I turn 30 in 10 days & I haven't accomplished any of the things I remember saying "I hope I do" by I'm 30.  Guess what else.  I am happy with my life.  Genuinely happy.  I feel great about the things Steve & I have accomplished, about the growth I have had, about the person I am today.  I love myself, for the first time in probably 29 years, yet I still have these weird panic sessions about turning 30 & where I am financially, successfully, etc.

Why?  Why do we set these "boundaries" on ourselves.  I live a life full of goals still, and hope to always do so, but goals are a lot more realistic these days.  I also know that as I grow and as I change I will change my mind.  I will want different things.  That is the beauty of life, you change, you develop, you grow, and yet you remain true to you.

So please, understand an unattainable goal is the same as no goal at all & don't put that kind of pressure on yourself.  Live the best you can, learn the most you can, strive for the most you can; but accept you, for you, at every stage.  You don't have to be a certain way by the time you are 30, you just have to be YOU and be HAPPY with you. & Live. 

Do it for the Love

Let me tell y'all about the Do it for the Love foundation.  This is the foundation that Michael Franti & Sara Agah made after their experience with meeting Steve & I at Wanee.  (Click here to read our thoughts on that experience.)  It's an amazing feeling that each person we see receive this wonderful gift of experience & live music, that we had a part in that.  I love reading all their stories because not only am I delighted to see so many people get a good dose of musical medicine but I'm also inspired by how many beautiful people there are that are fighting a battle and still able to enjoy life!  

They have blessed our lives with so much love and light.  Obviously our relationship with Michael is one we will cherish for life.  He took the time out to get to know us, takes the time out of his extremely busy schedule to still check in on us, really helps spread awareness for loving others, for ALS, & for so many other medical conditions that need awareness desperately, sends us positive uplifting messages, & positive uplifting people.  We've met some life long friends through him, and feel blessed to be surrounded by so much love.  I feel like Sara and I have been friends our whole life, she's an amazing soul & it's a blessing to have her. 

We've also gotten to meet Dave Matthews who has been a long time favorite of both Steve & myself. (here's a blog on that experience) We had the chance to meet Xavier Rudd & Ray Lamangntange (Steve was hospitalized both concerts and we unfortunately had to miss them but received love from those artists despite that).  

We met Trevor Hall at Soulshine August 1st whose music has really helped us in this journey.  His songs are a strong calming force that  inspires and ignites us.  He was a joy to meet, just as great of a presence in person as he is in his music.  Truly he heals my soul!  We left soulshine early due to Steve not feeling well, and missed meeting SOJA.  Steve got home and immediately messaged Lisa Rueff (without me knowing), who works so hard for Do it for the Love.  He said,  "Hey Lisa. It's Steve D, speaking to you with my eye's. Hope really loves SOJA and her birthday is the 17TH and i'm hoping you can get an autograph picture or something. Please let me know if this can happen. Thank you."  Well she came to visit us in the hospital yesterday with a bag full of surprises (I got to open one early) signed with love and excitement by SOJA.  It made my day to see how happy Steve was that he got to surprise me, that he was so thoughtful to ask that for me even while feeling so sick, that Lisa worked her magic, & that SOJA was up for sharing their love.  It was the light in the dark we always talk about.  

That's what Do it for the Love does.  They shine light for those who need it the most.  If you or a friend knows a child or adult with a life threatening illness, disability, or a wounded veteran please sign them up.  There are tons of amazing musicians they are working with.  These kind of experiences are life changing, they help your forget there is illness for a little, and heal!  

Tuesday, August 5, 2014

Steve's ALS in simple detail

I want to first state, I choose not to address most negative comments because, simply, positive breeds positive, & same goes for negative.  No need to breed any negativity in our lives. However, I do want to explain things to all of those who need further details to understand Steve's (our) journey with ALS.

For starters, we don't mind feedback from people, we opened ourselves up to y'all and that's what happens, we are cool with it.  I do want y'all to know we do read every email, message, etc, I just cannot always respond to everyone.

This is a simple explanation of how Steve's ALS is different than others ALS, simply because EVERYONE is different and EVERYONE handles things differently so this is Steve's (our) story. 

Steve was an athlete his entire life, which led to numerous injuries, including head trauma and broken bones.  Steve was also jumped while in college by some gang members, where those that know him, can say he never fully recovered from.  We believe Steve's ALS is trauma induced.  

Because of that Steve has chronic pain, so yes he does take a lot of pain medications.  To those who question why we would give Steve pain medicine despite their loved one never having pain---again I say Steve is different.  He has real life, can't make that up, extreme pain---so yes I will give him as much pain medication as I medically can to keep him comfortable while not doing damage.  Yes it helps.  No it doesn't have ANYTHING to do with the further complications.

After Steve got his feeding tube placed in Feb 2013 he got a severe infection in his feeding tube which was the beginning of the infection phase.  Once you get a severe infection and you are already compromised it becomes very difficult for it to go away fully.  Come April & May we all know Steve was hospitalized with severe pneumonia, he had to get an emergency tracheostomy, & there began our respiratory problems.  July is when we discovered Steve grew infections in his lungs.  Despite all the natural remedies, the slew of antibiotics he has been on since then---they are colonized.  Meaning they will never go away.  Now Steve is resilient and lives with these infections everyday.  Some days he feels great & some days he feels terrible.  We take full advantage of those great days & we let him rest on those not so great days.  Since the feeding tube was placed Steve had begun large problems tolerating feeds.  I even made our own food that was a special formula for sensitive stomachs, but the problem only got worse.  Come October of 2013 Steve began to no longer be able to take food by stomach AT ALL.  Anything we would give him, he would throw up, aspirate, get pneumonia, and lose more weight.  We got him placed on IV foods, tried slow feeds up until Feb 2014 but it only ever made him sick.  It's called gastroparesis.  No it doesn't happen to all ALS patients, in fact hardly any.  Yes it did happen to Steve. The same time Steve became vent dependent.  Upon initial diagnoses Steve did not want to be on the vent full time.  Yes he changed his mind. (yes I'm thankful he did)  Now, due to him only receiving IV nutrients he is malnourished.  He has developed anemia of chronic disease, where he is no longer able to make red blood cells.  Steve will need frequent infusions.  This has it's own share of risks but to put it simply is that one day he will not longer be able to receive a transfusion.  We have idea when that will happen, nor do we have a way of  determine when that will be.  Steve has experienced frequent UTI's since day one of diagnoses.  If you research you will see that the bladder gradually becomes weaker to where you can't fully empty, that will breed infection.  Add Steve having infections internally already that will never go away, add a catheter to help him to void completely, you get an infection festering paradise. As of now Steve is unable to urinate without a catheter.  Steve will have infections always and will be on antibiotics always, but Steve can live with infections if we continue to be diligent to stay on top of them.  

Now that you have the abbreviated version, let me touch on the most important part of this story.  Steve's courage and strength are amazing.  Not everyone has it.  He wants to live as long as he physically can & is willing to go through a lot to be able to stay alive.  He CHOOSES every day to fight, no one else decides it but him.  While Steve sleeps a lot more these days and sometimes forgets getting medicine or small things here or there, he is of VERY SOUND MIND. I will honor every decision Steve wants to make, ever.  Therefore, for those who question why we are still keeping Steve alive, know this; Steve is amazing, we live an amazing life, and he chooses to stay alive, so therefore I do everything I can along with our amazing medical team to keep him alive.  

Thank you to those who understands, supports, and respects our fight.  Thank you for those who can be brave and spend time with us despite how heavy things can be at times.  Thank you for those who know we are full of light, life, & happiness literally everyday that we have another day together & for those who help keep that light shining.  Not everyone will handle a diagnoses of ALS like this & that is okay.  Because the beauty is it's Steve's life & he is choosing to live it how he wants.   So I hope we all honor not only his choices but everyone else who is faced with this awful disease, because unless you are in their shoes you will never know what you would choose.  I also hope you never have to.

Thanks, much love, light, & positivity for y'all 

Wednesday, July 30, 2014

Know you. Love you.

If I have the chance to sit outside, I will always take it
If someone offers me wine, the answer is always yes
I don't eat meat and never want to again
Yet I want a cigarette almost everyday of my life
I don't smoke
Because I choose not to daily
I talk a lot
I also listen
I am a very good listener
I miss having people feel like they can confide in me like they did when I was just a therapist
People don't like to tell me their problems now
Because we all know nothing outweighs ALS
People are often scared to ask details about our life with ALS.
We don't mind.
We like to talk about it
We love our lives
I smudge a lot 
If you know what that means then we would probably get along very well
I'm open minded
I have strong beliefs
Yes at the same time
I want others to be able to decide for themselves
I don't want someone to tell me what to choose 
I respect others freedom
Because I value mine so much
Steve & ALS gave me a spine.
The things in the past that I used to tolerate doesn't fly with me now
I still consider myself a loving nice person
I love myself as well as others now
And that is why things have changed.
I care about what others think
I want people to feel happy around me
I want to be positive in their life
If someone doesn't like my outfit, tattoos, or hair I don't care
I will be offended if you call me ugly
But much more so if you call me dumb
I had to work hard to learn what I have
And never want to stop learning
I hope I learn something new everyday of my life
Because that's how I grow
I am deep
I analyze my thoughts and actions every day
I journal almost everyday
I like writing
I have realized I'm actually good at it
While I still have a lot of grammar issues to work out
I believe I am a good writer while I struggle with grammar
I like to learn
I keep trying to learn
The more I learn the better I become
At everything
I meditate every day
If not I worry and fall apart
which I cannot afford to do
I also need to keep my feet on the ground
Some days life is surreal
And some days it gets to me
So I mediate
Every day
Yoga started because I'm vain
I want to look the best, feel the best, & be the best I can
I call it self care vain
Yoga turned into more
It is a lifestyle
Yoga helped me become the Hope people need me to be
The Hope I want to be.
I presently live to make a difference in the world
And I hope I always will.

I hope each of you feel this much clarity with who you are currently or one day.  I hope that you are patient to understand that you are ever evolving and changing. I hope you learn to know you.  Most important I hope you can all learn to love you.  

Tuesday, July 22, 2014

Positive energy for the win

Sometimes life presents certain situations that could get you down, if you choose to let it.  Sometimes it's so easy just to pout, scream, cry, swear, and stay in bed a few days.  However, that route isn't very satisfying.  It makes you feel bad, sad, even angry.  Holding onto those feelings eventually can cause physical sickness.   So why not do the work & feel better?  Once you learn to start thinking more positive, working on communicating why you are feeling these things, and then working on letting them go, the work becomes easier.  To the point where you begin to say, "Yeah the whole staying in bed pouting thing is not an option,"  and you put your big girl pants on and do what needs to be done.  

It's a beautiful thing actually when you can start to catch yourself in that process.  You say "ah wait I'm focusing on the negative right now, and allowing that to control my mood and feelings,  I don't want to feel negative, I want to feel positive."  You then change your focus. It's beautiful to reach that point.  Be patient with yourself because somedays the negative will be harder to kick than others, but if you can be the one to stop it, that's progress.  Each time you stop it and shift your energy back to positive, the easier it becomes to remain positive and come back to positive more quickly.  

When it is hard ask.  The universe will help you find the positive energy and let go of the negative if you ask.  Pray for it, ask for help getting the positive energy, surround yourself with positive people, plan fun things, do a sage cleanse, do some earthing etc, whatever you find that works for you.  If you set your intentions of wanting to remain positive and something negative comes up, ask for the positive; it will come.  I promise. 

I can say this because it's been a process of mine for a while, and I have been seeing the change & feeling it.  I can honestly tell you from experience that if you do the work, it will pay off. 

Monday, July 21, 2014

It literally changed my life

I don't know if I'm alone on this but I have a lot of "it changed my life" moments lately, and here's what I think about it.  Before, when I never paid attention to the world around me, hardly even paid attention to the people I was with, I never had a lot of life changing moments.  I've always had a positive outlook on life but never really experienced a lot of ah ha moments. Now that I am open the experience, it happens more often.  I see it in everything.  

The amazing people we met on our honeymoon, taught us the value to looking at the simple things in life, being grateful, & focusing on what we do have.  Also, the amazing feeling we got from traveling and connecting with others inspired lots of new experiences.  Wanee (the first year and second year), 2012 Wanee taught us to get in touch with nature and others in a deeper way. Taught us to relax more and have fun; always dance, be happy, & to try to make it to as many shows as we can because music is healing. The 2013 year is when Michael Franti showed us the most amazing kindness and shared our story with thousands of people (both at the show & after online).  Steve & I have always wanted to reach the massess with our story because of the ALS awareness & our story of our love, and with Michael's help we have reached more than we imagined. The documentary premiere even; to be able to feel and revive that much love from the room. It was a dream come true shows us that if you have a dream, never doubt yourself, go for it. If you work hard enough it will come true. ☺️

You have to be open to what the world is presenting you with---if not you will miss lots of life changing experiences. 

So give yourselves a chance for these moments to happen. Open your hearts and your minds, & be present.  You will be amazed how many days become more than just amazing but they change your life as well.  

Friday, July 18, 2014

Self love

 I've had a few people message or say sly remarks recently about my like of photos of my self, a selfie, or a photo shoot. Photo shoots are fun y'all. Seriously & if you don't think so you haven't done it up right. The perfect hair & makeup, awesome outfit, great photographer who understands angles and lighting and capture you looking your best. That feeling of seeing a photo and seeing your true beauty. It's something everyone should feel. Imagine if we all realized how beautiful we actually are. Showed ourselves more love---how much happier the world would be.

I grew up thinking I was ugly.  More awkward than ugly but still didn't consider myself pretty. No one should ever feel that way. That's why getting dressed up & taking photos makes me happy & should make you happy too. Have fun & love yourself more. You are important and taking care of you is important, & you can't properly care for you until you love you. Let's stop beating ourselves up & start lifting ourselves up. So when someone tells you to stop taking so many photos of yourself---say no I think you should take more of yourself. ❤️

So on the subject of photo shoots, I want to tell y'all about my Free People dream come true.  A few months ago they asked me to be apart of their fpme shoot.  Of course I was worried about who would take care of Steve, but thankfully he saw this as a fun break for me, and insisted.  Thanks to my friends Jen & Meradith for coming to stay with Steve I had the chance to go have the best day! check it out :)  Free people inspires girls to be free spirits, strong, determined, adventurous, loving, happy, & well rounded girls.  Girls that should be looked up to, that inspire others to be great & look great while doing so!  I love to take photos in their clothes & share them on their site.  Since coming in contact with them they have sent me a few outfits as gifts, simply for being a free people girl.  It's an honor & wanted to share this side of what makes me, me. :) 

photo: fp Jana Kirn