Keep your eye on the end result

I have a confession to make. (How many are singing foo fighters now? :))

I tend to carry myself as though I don't allow the heaviness of the world get me down, or like I have my shit together really.  I don't always know why I do it, maybe defense mechanism.  The truth is, some days I'm a hot damn mess and the past few days I've been drowning in ALL of it.

The IRS investigating me, the noise of the world, student loan and financial harassment (new year, new line of collectors calling), what more can I do for Steve, trying to hustle to make money, taking class, and relentlessly trying to shine a light in all this darkness.  Yesterday as I sat on the floor unable to barely function as an adult, I couldn't help but feel like a fraud; and kept having flashbacks of well intended and well written blogs, where I'm sure I made it appear I had it all figured out.  

Here's the truth, some days I can't do anything but numbly tend to Steve's regular needs and nothing extra.  I try, I promise you I'm crawling around here trying to function or create something, maybe wipe a kitchen counter full of herbs; but damnit I can't do anything.  When I have these moments, words from a grad school professor that I obviously haven't let go of still ring in my ear, "Hope, have you ever considered you're bipolar?"

Having my masters in clinical psychology, I don't like to downplay the importance of mental health, but let's stop diagnosing everyone with a disorder for having normal human emotions, shall we?  Am I bipolar? No.  Did I feel like maybe I was yesterday and begin to talk to myself as though all I was, was a damn mess who would never get her life together.  Yep.  Sure did.  Old patterns are hard to break when you're in the thick of it.

I went to my trusty friend who is a practicing shaman, and has been teaching me endlessly from the night she walked into our hospital room to be Steve's nurse; and she said one sentence that helped me clear all of the weight.  She said, "Keep your eye on the outcome." Hearing those words lifted the weight, and helped me begin to put one foot in front of the other.  

Truth is I'm not a damn mess and seeing myself that way only creates more mess. I am a human being carrying more weight some days than I can handle; and my relentless pursuit to be able to handle it all comes crashing in on me.  

So here I am as I deal with the many tests being thrown at me, and accepting my side of responsibility for this.  My inconspicuous two last names, and lack of follow through on organizing life has caught up to me.  When you decide that maybe you're going to be a light worker the world is going to test you.  It's trying to see if you are really invested in this path. So when you get beat down, it's hard not to allow the feeling of failing tests to add to the weight.   

Why am I sharing this?   Well, for starters I know I have done nothing wrong (on the IRS side) and it's mostly a lesson in why being organized AND wildly free and creative is an important balance.  Also, because I know I'm not alone in having those days where it's hard to peel yourself off the floor; and if me sharing my journey helps one person, it's worth it.  Bonus reason, so you can understand why I've been a little more silent lately and why our paypal account is locked. 

So while I search for someone to spend some hours with Steve so I can clear up some of this nonsense, be patient with us.  If you're one of the kind souls who help support us, and have asked how to donate with our Paypal being down; you can now send money securely through Facebook messenger.  Wow, right? I said the same thing, when a donation was deposited right away the day it was made, (thank you angel who likes to remain anonymous for always shining some light our way).   I will blog regularly again soon, as I find the words that are more than spreading my shit like peanut butter on a piece of toast ;).  

If I can accept responsibility, I promise you can too; you can handle this.

I have always felt a sense of responsibility for doing anything I could to help; to help people, our planet, the collective well being, etc.  This responsibility is one of the first solid pieces of my personality that I can identify.  It's a large reason why I was able to chose love and marry Steve, and let go of any bit of fear that would try to stop me. 

I stepped into this role very well aware of the responsibility it would take, and was totally up for it. I never knew how to prepare for something like this, but just trusted I would figure it out. In the midst of some of our craziest times, I would be given little gifts of knowing how to handle it. I pulled from every stage of my life and the lessons they provided me. When I was able to take a step back, I was given clear insight on how my entire life has prepared me for this moment.  It's the reason I am on that up hill trudge of book writing, and why I blog; why I share so much of my life and what we have going on in this moment. 

This blog is often all over the place, speaking out about more than just ALS or what affects JUST US, because I follow the pull I have come to trust, it guides me well.  I've never had such an understanding of why I am where I am in my life.  It's probably why I am able to take in so much, and still shine light, because it's what I'm created for.

Now, as I stand here on the same level as you, because I'm not on a pedestal; I'm here with you, I want to ask you to look me in the eye.  Can you please look at me, and tell me are you showing up fully?  To me showing up, isn't about me.  It isn't about what's best for me.  Trust me I have learned balance with self care and having to show up for myself; but that will never mean that other people stop mattering.  Showing up, is understanding how every person matters.  

This also goes into animals and the planet.  Showing up, means you realize that we are given voices, and capabilities not just to have followers, notoriety, or making something pretty; It's to use those things to stand up for the greater good for ALL OF US.  Not just for you.  That's not showing up fully to life.  

If someone else is being shown injustice, it does directly impact me which will then impact everyone who follows me, which will then spread in what direction they take it; leading to a ripple effect.  The ripple effect is God's way to try to remind us that whether we are willing to see it, we ARE connected.  Same goes with our planet, if you're disconnected you might believe it's out of our hands but I promise with the rate of people just accepting more drilling, fracking, oil, etc you will have to face this problem a lot sooner than you could prepare for.  I also promise that if we ALL did something about it, we could slow this all down.  We can't forget our role we play in all of this. We can't forget our responsibilities.  

I feel the speed at which we are moving, and as hard as we all are trying to stand firm in our positions, the world's shaking us up.  It's shaking everyone awake.  If you aren't awake yet, just give it time, all of what is happening WILL impact you.  So what do we do with this responsibility?  Do we simply share articles that prove our point or are we being a part of the change.  

There's a reason I'm studying gardening/repairing soil and herbs so much, there's a reason I'm on my hustle game to try to get enough money to invest into these renewable s out there. There's a reason I'm sitting here taking time from my day to blog.  There's a reason I'm tuning into myself and my needs while I still exert large amounts of energy to show up for others. There's a reason Steve and I use our little platform in this world to speak up. 

I know that by me accepting the responsibility it reminds you, of how capable you are of doing the same.  You all may look at me like I'm some crazy person, or maybe a super hero; but you are JUST AS CAPABLE, you are just as powerful, and you have just as much of that super hero in you.  I just was given the gift of seeing it in myself.  So please, now that you're doing looking at me, look at you.  Look at how much YOU CAN DO.  

Fear is the enemy, not people.

Yesterday's blog while important, was short and simple to help me fulfill an important obligation I made to myself, while having a migraine.  I was using that exercise to muster the energy I needed to get through wound care, and boy did I need it.

While I was struggling to get Steve comfortable as we had to rearrange pillows and pads that prop him up off his wounds, I was struggling. The truth is it took every bit of energy I had not to rush him through this process because I didn't feel well.  One thought helped me through and it was, "What a privilege that my problem is just a strong fucking headache."  I could be in Steve's position.  

I have very little tolerance these days for people complaining about something they can control, or something they can't.  Hell let me be honest while I'm at it maybe it's complaining in general, which is why I'll beat myself up if I do too.  Steve didn't complain as we turned his stiff, lifeless body three times to get the pads and pillows positioned in a way where he can continue to heal.  He didn't complain when his catheter bag leaked on him, and we then had to clean him again, so tell me again how you are going to complain about that extra 30 minutes you sat in your car that you're privileged enough to own to go to that job or home or wherever you're privileged enough to be going. 

So here it is: 

I see people sit comfortably from their homes, safe, with their family nice and safe saying things like, "Y'all need to calm down, and let Trump do his job."  I have a hard time not to get upset about the lack of compassion or maybe it's the lack of acknowledgement about privilege.

It's hard because we have seen family members, and friends put themselves into harms way for the safety of our country, and I have read people say, "How are we going to help these refugees when we can't help our own veterans, and poor?" 

Any veteran deserves our respect and reverence as well as our help, agreed.  Tell me, have you helped? Have you donated time, money, services, etc to anything to help our veterans out? How about the homeless you see on the street, did you stop to help them?  Did you think about them when you ate your warm meal?  YES those people do desperately need our help; but what they don't need is us to then use them as our excuse as to why we can't help others fleeing for their lives. 

I do try to put myself into other people's shoes on this and see your point of view; but ultimately where this comes down to, is real humans who have been living in our country contributing to the collective well being suddenly aren't allowed here because of where they were born.  For us not to see this as blatant white privilege is probably a large reason why I was struck with a migraine. 

Growing up in the church, I learned early on that people love to attack Christians for not practicing what they preach, and while some may need reminded, there are some out there speaking up for helping EVERYONE, let's not forget those.  Those who aren't for helping refugees or stopping the muslim ban have been lumped into generalizations; which isn't fair because It's not because they are bad people. Please recognize your generalization of lumping all christian's being bad people, is just as lumping all Muslim's into being terrorists.  There are some that hide behind a religion to mask their bad behaviors, it's not the religious affiliations fault, it's the individual persons.  While, I'm hoping people can open their minds and hearts to seeing how it is our duty to help anyone suffering; I know that judging them for their fear isn't the answer. 

So maybe they need someone to calmly sit with them and show them how if they take the bible as their way to live life, they need to see EVERYONE as deserving of love, understanding, compassion, etc; instead of being seen as a threat. 

We are changed by every act of terror on any country, because it's a very small group of a population creating world wide fear on anyone like them.  It's what they want, and it's what is happening.  I hesitated to write on this because every time I try to become truly educated on the subject, I get another opposing article thrown in my face.  It's a ping pong of information back and forth from one side or another.

So instead I look to the people who are actually affected.  The videos and photos of the refugees and those being detained from coming to their HOMES.  That told me all I needed to know, human beings are hurting because of the lack of compassion or understanding from other human beings.  We are hurting each other because instead of communicating with grace we are shouting, and raising fists.  We are all pissed, and also so sure we are right, that we forgot how to treat one another with dignity.  

I'm sorry if my fear has ever caused you any pain, or if my inability to see my own privilege ever cause you any pain.  I'm sorry that we are here; but also I'm still hopeful.  

Before you start searching for your stones, let me tell you why.  I'm hopeful because we now have an opportunity to apologize for our mistakes, forgive those who think differently, and strip all of it away and really get on a human level.  Because the media, the president, government, etc isn't going to solve our problems; because you don't really ever see the whole story or the truth.  What is going to save us, is us being stripped of our comfy lifestyles where we've gotten away with avoiding to look those hurting in the face; and finally see it there blinding us.  Really look at those suffering, look at their faces. 

Look at what a reaction it's bringing from us.  I want to please encourage those feeling fear, to follow that fear to the human level.  You're afraid for your family, while those fleeing for their lives (or those who fled years ago and have lived here for years) are also afraid for theirs. PLEASE SEE IT, they are hurting, they need our help, don't turn away.  If we can do this for everyone, we won't have to be afraid for ours.  Is this finally our chance to see it?  

I know it's easy for me to type these words, while Steve and I are safely tucked away in our little corner of the world.  We don't leave our house, and we have control on who enters our spaces much more than most.  I understand that privilege and I understand that the only thing I physically can do in this wild situation you probably don't even understand because it's too hard to look at; is to write.  So here it is, a mess of vulnerable true heart writings.  

Because I know deep down when you remove EVERYTHING we care about people.  Those people who are wanting the Muslim ban to end care about innocent people's lives being ruined by a generalization, but that doesn't mean they don't care about your family or your safety.  On the other side, I know deep down some of you who agree with the ban, care about those being detained and the refugees lives, because I know some of you personally.  When you remove all the attacking on social media, I know you care; but your fear is winning.  

Fear is the enemy here, not people.  I am here to ask those on both sides, let's try to communicate again, let's really listen and speak to each other with dignity.  I know I'm guilty too, because I'm quick to shut down those opposing to me; so while I do my work, will y'all please join me?  It's the only thing that's going to help.

Simple exercise to start your week.

Here's a simple blog today.  The whole world needs this one today.  

Immediately after reading this, close your eyes, (because I really hope you aren't reading this and driving;)) and proclaim 5 things you're grateful for.  If you don't feel full of joy for your blessings after 5 do 10, 15, 20...however many you need to do.

Now, I know some are quickly going to answer with 1 of 2 things.  Hope, I don't have anything going well in my life right now OR Hope, how can I be thankful when the world has so many others hurting?

1. You do have things going well, it's perspective.  If you are awake, have the ability to move your body, breathe on your own, speak, eat, and leave your house; there's an easy 6.  If you don't I can almost guarantee I don't have to tell you to be thankful, Steve's one of the most gracious people I know.  

2. There certainly are a lot of people out there suffering, and it is hard to see and not feel like we have to carry their suffering.  Trust me I get it.  However, you owe it to them to recognize how blessed you are.  You owe it to them to revel in the magic that is your freedom to think whatever you want even if it means you get into Facebook fights with your family!  Recognizing your blessings, also puts into perspective that no matter what you feel about anything going on in the world, we all deserve the freedom to be who we are.  

Okay, now that we are feeling thankful for our blessings, I have one final request : SHOW LOVE to someone today, someone that you find hard to show love to normally.   

That's it, short and simple.  If you read this and it helped you shift perspectives today, share it.  Because you never know who needs to hear this. <3 

Instead of tearing down, I want to build up.

What if we build each other up?

I have this thing where I write about every ex after a break up, to try to download all the lessons, I've included small pieces of vague references in my book, which happens Steve’s favorite part. It's very insightful, that type of insight I hope to reflect through the whole book.  Yesterday while editing, I read something an ex said to me, and it sparked this blog. 

He said, “ You know people are going to think you're fake because you're always complimenting everyone.”

"Well that's a silly thing to say." I replied, both of us surprised because I didn't speak up much in these days, and I even continued, “ If you really look you can find something good in everyone, why wouldn't you tell them what good you see? If you can't do that maybe you need to look in the mirror.”

Apparently he didn't want to do that, as he did me the biggest favor of my life by ending our relationship.

I never truly processed this until I felt the power I receive from Steve when he builds me up.  He's been building me up since day 1 and it's because of the way he sees me that I've ever been able to do anything that I have for him. From the first time ALS showed it's true colors, and I proclaimed, "I don't know what to do," Steve was there to tell me, "You're smart, you're strong, and you're creative; I know you'll help me figure this out."  Learning each new stage, when he would sense I was nervous he would remind me with a smile, "I trust you with my life."  He has never seen me as anything but capable, intelligent, loving, etc and by him holding me in this space, I became stronger and more powerful than I could have ever imagined.

Now imagine if we all did that for just one person (or more if you can muster it.) Damn the positive power we could generate.  It's not hard really, you just look at the person and say, "Did you know you are really kind, smart, creative, caring, whimsical, magical, healing, funny, talented, capable,...." Don't stop reminding them, even when they can see it for themselves; because the type of power we can cultivate by helping people see the good in them, is stronger than any negative force around. 

A Brief Look into Our Journey with Earth Medicine. :)

A lot of you have asked me recently about my  herbalist path, and a lot have asked what all I've been doing with Steve.  I'm pretty slow to share a lot of our process because I am still a student and am still learning, and what I use is particular to Steve's case shouldn't be anything used across the board.  I will share some things, but I want to do one VERY IMPORTANT note before I start.

In herbal medicine, it is important to research and understand contraindications.  For example, Steve is on pain medication that doesn't mix well with all herbal medications, as well as his kidney and liver are compromised so we pay attention for anything harsh on them, he's on blood thinners because he has a PICC line so if an herb thins your blood he definitely shouldn't be taking them, and even more subtle things such as Steve's history of extreme water retention, means he shouldn't be taking herbs like licorice.  This is why I'm not always shouting out our herbs, because the more complicated your situation, the more you truly need to customize what you're using.  

With that said, when doctors tell you, there's nothing else you can do, you will begin to try anything.  I know that sense of urgency, and it's probably the reason I've failed so many times at getting Steve's stomach to work.  Until I began to attempt herbals, I hadn't adopted the number 1 key principle.  One thing at a time.  When I was trying to introduce Steve to food, I didn't make him complicated foods per say, but I wasn't doing just 1 thing at a time.  So here is a short story, now that I gave this VERY IMPORTANT preface to the story. 

Steve's first hospital visit, ended in an emergency tracheotomy and his first lung infection. Steve battled UTI's most of his life, so because of modern day living with antibiotics in food and his history with antibiotics he already started with a slight resistance to antibiotics.  When dealing with an illness like ALS you are susceptible to the big bugs! So we started with Pseudomonas and MRSA.  This was in March 2013.  Fast forward to 2015 when Pseudomonas became colonized and Steve would have as many as 2-3 active infections at a time in multiple areas.  By this time Steve had already been diagnosed with gastroparesis, gotten down to 67 pounds, and was placed on IV nutrition that started his weight gain to his 150 lbs and IV antibiotics for months at a time. 

In 2015, I had a dear friend introduce me to Ayurveda and it began to change both of our lives in incredible ways.  The most important take away was in how food is medicine, and I knew someday I would get Steve's stomach to tolerate food, so I started studying nutrition and reading any book I could get my hands on.  With little success with foods at this time, we started some light teas that had no contraindications with Steve; things like Ginger, Eleuthero, mint, and Calendula.  I began using Calendula on some fungus issues the years of antibiotics caused (finger nails, feeding tubes, legs, toe nails) & started using turmeric on them also.  I didn't venture too much further away from this, and the sporadic failed attempts of food. These little things helped, but come mid 2016 we reached a wall.

Steve was officially resistant to antibiotics, they weren't touching his infections, they were spreading all over, his body was deteriorating literally inside and out, so Steve and I decided okay we are at a point where we have to go further into the herbal world.  We are fortunate enough that because Steve is on IV food, we have an incredible pharmacy and nutrition team that follows Steve, and that means weekly labs.  So I decided we start with one thing a week, and if his labs stay positive we keep if, if they got negative in any way we stopped it.  This triggered the same journey with food.  I started with 80 % water and just lentils, and when he tolerated that, I would get the consistency to 50/50 (it's still that watered down), and when he tolerated that, I added one thing at a time.  If you follow my instagram stories you know I give him up to 7 ingredients at once now and he tolerates them beautifully!

 That same slow process with the herbals during the same time has gotten us to present day.  Steve's hemaglobin is up to 11, when he's spent years at 8 as his norm, needing transfusions every 2-3 months (when it's below 6) to only able to raise up to 10 for just a few days after a transfusion.  He's infection free.  He had that small hospital visit, where he was finally able to respond to antibiotics again.  

We are also healing a wound.  If you've followed our wound story, you know we've been hit with several set backs; mostly associated with hospital visits.  Half way into this wound journey, after speaking with a wonderful wound care nurse, I started making Steve my own medicine to put on his butt.  It's what I've come to call green calendula oil/salve/honey.  Now I'm sure I'm not the first to use the two power house healers of marijuana and calendula together, and I'm also sure I'm not the first who waited to talk about it until after our state finally approved it's use for ALS patients.  What's up big brother. ;)  

I use this salve on his feeding tube, trach, and his wound.  All simply because these issues were left to us with, "There's nothing we can do" on the medical end of the spectrum. So, we went there, and with the same patience this all has taken, we are seeing results on healing.  

I want to state, when you start to build up stride in a routine, it's extremely hard not to let a set back discourage you.  It halted our forward progress many times because we would be so discouraged, so don't beat yourselves up if you find yourself feeling bummed.  It's frustrating, but truthfully it's ALS.  Even us healthy folks catch the common cold here and there. :) 

So if you needed the nudge to educate yourself, here it is.  Please remember, while there's magic from the earth, you do need to understand how everything interacts.  If anything our journey taught us that if you search you will find a team of doctors, nurses, pharmacists, nutritionists, etc that will be a sounding board for you.  If you don't have one right now, don't get discouraged.  Three doctors told us that Steve was dying and they wouldn't help him when he was going through the gastroparesis, needing a doctor to follow us for IV phase.  Had we listened to them, we wouldn't be here today.  Not to say you still won't come across the doctor who comes in and says, "There's nothing we can do," in fact you might reach that point, with all; but if they are truly invested in your care they will support you as you journey into the natural medicine world, like ours has.

So with 2017 being the year of truths, here it is, but it's also the year of education, so I wanted to assure I wrote this blog in a way, where I reminded y'all to do your research before you add anything.  Truthfully even if someone tells you, unless they are educated in the area, I would do your own searching.  I've fallen into listening to others suggest something, and we use it assuming it's innocent to discovering it causing other problems.  Simple example is aloe.  I used it on Steve's feeding tube because his tube leaks stomach acid leading to burning his skin. Well, aloe mixed with Steve's situation caused a yeast infection.  Who would think something that innocent would create any kind of problem, but it did.  So do your research, I can't stress it enough. :)  Most importantly though, NEVER loose hope. :)