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 people.com


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
Genuinely
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 
Ever.
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
Yes
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.