LOVE

As I'm sitting here listening to our waterfall in the backyard, rushing to get all my morning routines done before Steve's bath, I take a break to look at the coffee mug I'm drinking my cinnamon cardamon bullet proof coffee out of.  'I don't know what I will blog about this morning', I'm thinking and keep looking at the mug.  Love is written on the side of the mug. Love.

Maybe I should write about LOVE.  Now I could probably write 100 blogs about love, so how do I write something meaningful in 20 minutes about love, when the word means so much.

Then I look down at my shirt, and read the words, "Just be yourself."  It strikes me as these are the words I'm seeing while trying to think of the words to write, and a thought came to me.  

This is how my brain works. :)

Have you ever witnessed someone say or do something very horrible to someone they love?  Haven't you yourself done this?  

I know I have.  I've talked before about snapping on Steve or whoever is near me in times of stress. Why do we do it, if we love them?  

It's because when we say or do these not so great things, we aren't operating out of a place of love.  I know when I'm focused on "doing it for the love" (shout out to Michael Franti and Sara Franti's www.doitforthelove.org) I act lovingly.  

When the anxiety, frustrations, disappointments, hurt feelings, etc are where I'm operating from; it's not easy to come from a place of love.  What if we all stopped for 1 minute before responding, and thought simply about the word love.  

Is my response from a place of love?  Is my response true to my authentic self?  Do I want to be the person who snaps and screams because you caught me at the wrong time? 

I often find myself using the mantra, "I AM LOVE."

Because when I snap, or find myself spitting out words that I immediately wish I could swallow back whole, it's because I am not operating out of love.  When I stop and remind myself that I AM love.  I can step back and find a loving way to reply.  

Just  because you are replying out of love doesn't mean you loose your voice, or that you aren't being true to yourself.  Because yes you are feeling that anger and frustration with that person; that's real life.  Feel them, but don't let them guide your actions or responses.  

You can still tell someone that they've made you angry out of love.  You can still explain to someone how fearful you are with love.  You don't have to have the angry response to stand your ground.  In fact your message will be heard more clearly if you pause and allow love to take over.  

It's a practice I participate in daily.  I want to always come from love, and do it for the love, and spread the love, and show only love.  It's not always easy, but learning to be true to my deepest desires of myself; which is to BE LOVE, it's worth it.  I find myself growing stronger each time I pause and repeat the mantra, and act from love.  I find myself able to let things go easier.  Often times not even feeling angry anymore. I find myself loving myself more.

That's a big one.  When I come from love, I love myself more.  Self love is important love too, but that's a whole other blog.

There a short blog on love, with 5 minutes to spare before our manic Monday starts.

Choose love this week, and watch your heart grow, y'all.

I LOVE YOU! xo

when judgment becomes education

I typically write my blogs while Steve's still off in dream land. His body loves sleep, so he will go until 10:30 or 11 on average.  So after I wrote my blog yesterday, and did a few things around the house, I went to wake him up to give his meds before his dad and I did wound care.

However, he wouldn't wake up for 10 minutes.  Of course the PTSD from Steve's coma over Christmas had me worked up.  Finally opening his eyes, he's starring at me wide eyed and panicked. Because Steve has such debilitating anxiety I often say, if I'm not scared, you don't need to be.  Well, I was scared, so he was beyond it. 

So if you saw my facebook or instagram post you know we held medicine until later in the day, and gave his body a rest from turning.  He slept until 1:30 until I went in there and really shook him awake.  Yes, I literally grabbed his shoulders and shook him (gently).  Again, his wide eyes are looking into mine, this time no panic---more annoyed.

"Why did you wake me up, I was just in a deep sleep."  He typed clearly now that his eyes actually were open.  I feel a sense of ease that he's communicating more clearly with me and gratitude that he's sassing me.  Sass means he's just fine. :)

I got an out pour of love, and support from our followers, loads of suggestions and encouragement from our medical team helping me sort out the medicine, and yes even some judgment.  

I want to write about this judgment, and it's not coming from a place of "how dare she judge me" that I used to reside in.  I would cringe when people would question my motives, or question how I care for Steve, question our choices, etc.  I would immediately regret making our journey so public and like a turtle I would retreat in my shell, hiding from everyone's opinions and thoughts.

Here's where I stand with it now.  Steve and I talk through EVERYTHING!  There are so many things that go on with Steve's care that if it was MY choice to make things would be different, that's probably no secret.  The thing is, it's not my choice. So yesterday when the judgments came in it felt different.  I didn't want to retreat or even defend myself (although I am writing a blog about it...).  

I instead wanted to reply to all of them excited, "OMG you're judging me and I don't care.  Not one care in me!!"  I wanted to display my ego centered, "look at me rise above it" for everyone to see.  I was so happy that I wasn't bummed out by what people were saying to me that I almost missed the lesson.  

So I opened a dialogue with these people.  Really hearing what they were saying, and offering some education on Steve, his journey with pain and medicine, with natural alternatives, etc.  It was an area where simply not allowing them questioning my choices to not bother me, I had to also not gloat that it didn't either.  

People say things/ask things mostly because they want to learn.  They want to understand the situation.  I know sometimes the suffocating feeling of being told how you should be handling your situation from a stranger, and I know the feeling of wanting to hide or snap.  (Lots of turtle references happening here.)  However, when I look at it from a different perspective, that feeling goes away. These people weren't intending for me to feel judged, it's how I perceived it.  They were showing they care!

How many people do we push away because we perceived their actions wrongly?  Trust me I know some people just need cut out, I've cut out entire families I'm such a pro.  But as someone who used to ALWAYS get upset over a little feedback, I can honestly say if I spent time in an actual open conversation with them I wouldn't feel that way. 

We educated one another.  Loads of people educating me on some new alternative natural medicinal's that exist for pain and me educating them on pain with ALS and pain with Steve. It was lovely to have open conversations with others and to really hear where they were coming from and in turn them really hearing and understanding our story and where we stand.

So for those who must know:  Yes Steve has tried a load of natural medicines for pain from the green sticky we know and love to creams, and tinctures, to oils, and beyond.  Dosing and availability have always been our battle here.  It's so hard to understand Steve's body and how it processes things.  Because he is only receiving nutrients via IV it's hard to know what's happening when you put things in his feeding tube.  Also, that gastroparesus limits us from putting things in his stomach, we go straight to the jejunum. 

For those who have no idea what any of that means.  I'll break it down in simple terms: Steve has a condition where his stomach will not empty what is put in it so it will come up instead of going down.  After we experienced his 67 lbs phase was when we started him on IV foods.  We've always had hope and even still do that one day i'll be able to fix his stomach, but it hasn't happened yet. 
So because of this special feeding tube placed in him we can still give him meds and a few things via the tube by passing the stomach and straight into the intestines.  So absorption of things are hard to understand in this complicated system.

Then there are the sub-lingual (under the tongue) ways to take some medicinal magic, well that absorption seems to offer zero release.  We can't explain why?   

So we will be cutting Steve's medicines again.  We had him down to a much more digestible dosage before this wound he has been working hard to heal, and we will get him back there.  It will be rough because we do have to move him so frequently for wound care; but I believe we will get there.  

Ultimately we need to find the balance of quality of life for Steve and not causing extreme harm.  We know there are long term effects.  More importantly I should say Steve knows.  Believe me they've been talked about in great detail the past few hospital visits.  From Steve's stand point; all he has is this very moment.  He can't think about long term effects, because that makes him not want to try to keep living with this awful disease.  He can only think about NOW.  So that's where I will be also. Here with him, in this moment; doing all that I can to keep him safe and comfortable.  

Thank you to everyone who supports us.  It's hard to be on this journey with us, and I understand it. So many of you feel so much love and compassion for Steve, it's beautiful to see.  So thank you.  It carries us through these crazy waters.  

So our plan is onward and forward the best we know how. xox. 

What is the lesson?

As life has been presenting me many opportunities to grow, I've learned some things that have been so helpful to me that I wanted to write a mini blog on one in particular.

It's a simple question, "What is the lesson?"

I have found myself being triggered by people, learning to identify where I feel the trigger in my body was the early steps.  She makes my stomach hurt, or he makes me feel like I can't breathe, or when he says that, I feel the anger crawling up my spine.

This was helpful in being able to identify what I was actually feeling, which was an important step, but none as important as what's next.

Why?  Why am I feeling this way?  Are they my mirror, showing me something I don't like that lies within myself by them acting it out?  What is it teaching me?  There's always a lesson.

Maybe the lesson is simple, and it's telling you, this persons energy isn't good to be around.  It's okay to be protective of who you allow yourself to be around.  Is it to bring up an old wound you haven't healed?  Maybe a parent or an ex did something similar and you never processed this.  Is it you?

Look just like the rest of every human around, I have dark sides that I would love if I could stay hidden.  However, it doesn't work that way.  If I don't learn to accept and own it, trust me it will be shown to me repeatedly.  

For instance, recently I got upset because I felt like Steve was wasting my time.  He would call me in the room and then sit and watch TV instead of typing what he needed.  I felt so bad about how CRAZY it made me.  I would get so upset and walk out of the room before he even told me what he needed.

So why am I sharing this unflattering story about myself.  Because in meditation I finally asked, "Why am I getting mad at Steve about this?"  Suddenly a friend came to visit, and taught me the practice I wrote in previous blogs about accounting for my day, and it dawned on me; I'm wasting my own time.  

Steve was just a mirror.  That's how it works in relationships.  You are triggered and it's up to you to figure out why and how to stop it.  It's not up to Steve to figure it out.  Once I was able to see that it wasn't actually Steve, it was me, I was able to right my wrong behavior and put the work to stop wasting my own time.

This is why I do my work.  Not only do I deserve me being the best me, but Steve does also.  

Enjoy your weekend y'all, and don't forget to ask the questions.  

Mindful follow up.

I received some sweet messages after yesterdays blog, about people worrying if I'm being too hard on myself.  

First off, thank you for caring for me like that.  It's surreal sometimes to feel so much love and support from so many people.  I'm so so thankful for all of you and the constant flow of goodness you send to me.

So am I being too hard on myself?

The answer is 100% no.  You want to know how I know this?  Because for a few years I went from being way too hard on myself about EVERYTHING and then slingshot to the other side of the spectrum for a few years I was way too easy on myself.

I understand I am human, in a pretty difficult situation; watching anyone you love suffer, is awful. There's no sugar coating it, it's one of the most difficult situations I will do.

However, being in this position for close to 5 years now, I see how I've been given many beautiful gifts; one of those being the gift of empowerment, and the ability to see exactly what I am capable of. I know what kind of an impact I can make on this world, but only if I am doing the work.  If I'm floating around sort of lost in the clouds, how can I reach those needing to hear from me.

I have work to do and it's time I hold myself accountable.  I've learned that no one else will do it for me.  Because, it's not their job to, it's mine.  So that's what yesterday was.

I will still strive for some me time everyday, it will just be spent doing more productive and mindful things.  Yesterdays blog was to recognize the ease to get lost in my news feed, that half of it doesn't serve me.  It was an admission that I wasn't fully practicing what I preach, with living in the present.  It was a statement to myself and the universe that I am aware of the mindless nonsense and I will work through it.

Will it happen over night?  Of course not, because I still rely heavily on social media to get our story to others, to have connection with those caregivers scattered across the world going through a very similar situation as me, to keep up with my beautiful friends and family, to sell whatever creation I muster up that day, etc.   

However, it's on me if I haven't gotten anything done with my day because the 300 Steve related "distractions" that happen in any given day is enough for my brain.  Add social media, and I'll spend a whole day, going from Steve needing me every 30 minutes, to walking around aimlessly in between not able to focus because my phones in my hand and the other hands scrolling. 

I don't like to use the word distraction above with Steve, however I can't think of another way to explain it.  So let me put this here for those who don't already know.  I will always happily drop whatever I'm doing to go to Steve when he needs me.  Caregiver is my #1 hat.  All the rest is bonus. The point is, because Steve needs me so frequently, some days, I don't NEED any distractions.  I NEED to be spending my time that I'm not with Steve doing something that grounds me, or brings me joy.  Not wasting it mindlessly.  

I've realized how important what I ingest food/beverage wise is to my body and health  in dramatic ways the past year, and I've learned the same with my eyes and ears.  It's just as important and I am going to be mindful of what I intake.  

To be the best me, it takes a constant awareness.  It's not being hard on myself.  It's holding myself accountable to reach my highest potential.  It's an understanding of how much I can be doing in the world when I'm grounded, balanced, and focused.  So here I go off on another day of practicing mindful living.  Practice, practice, practice. 

I love you all. xo

Mindfully accepting.

With every new challenge ALS brings to us, it takes acceptance and adjustments.  Acceptance that this is the reality now.  First comes the feeding tubes, the catheters, the traches, the vents, IV food (for us), to loosing more and more mobility, to bed sores.  Once you can accept the reality the adjusting seems to come a little more naturally.

Acceptance has been something that we have had to work towards.  It's a hard thing to accept the realities of this disease.  It's hard to accept that there's not more I can be doing, or that there's no more help I can be given from nursing stand points, or that there's no medical treatment for all these complications, or that we have another wound to address.

Sometimes trying to wrap my mind around accepting things I do no like, is a challenge for me.  My warrior mentality kicks in, no way will I accept this.  I don't like it.  I want to change it.  I will change it....

Then I get exhausted by running around with zero focus, accomplishing close to nothing; because I'm still wracking my brain on how to change the unchangeable.  On moments like this, where I'm stressing the situations I cannot change, I find myself doing the mindless scroll on the phone. Basically, I'm filling my brain with other peoples lives and dreams, to avoid facing my reality; because I haven't accepted it.


*God help me to accept the things I cannot change* Yes yes....I hear you serenity prayer.

This, without meaning to play on words, is unacceptable.  Here's a simple truth I realized this week, because I have been indulging in the many distractions in front of me; I've been holding myself back. I haven't worked as hard as I could, I haven't done our taxes, finished my Ayurveda class, worked on my book until yesterday.  The list of things I have not made the mind space for is long, and something to add to my list of accepting.

Aside from our daily 2-3 hour wound care and re positioning and the many other minutes to hours I spend with Steve, I have been wasting my time.  Accusing all kinds of other circumstances of doing so.

Of course, I'm accomplishing tasks, EVENTUALLY.   I have too much to offer the world to be wasting my time on the mindless checking out.  Don't get me wrong, social media is a huge part of my life; and probably always will be.  We have grown to love a lot of our followers and supporters and have even made life long friendships with people we've met on social media.  It's important to share our story, as it's making a large impact in the world; and it's a beautiful thing to see Steve light up as he's changing lives.

However, there's mindful social media, and mindless; and it's time I let go of the mindless.  There I accept that I've not been fully practicing what I preach, I have found chunks of my day where I can't tell you what I did with it, and now I know that I'm not always living in the present.

IT IS SO EASY to check out, to do the mindless scroll, and to try to hide from the reality of the situation, however it doesn't help anything.  All it has done was leave me feeling like I am not living up to my potential.  I have so many ideas, creations, words, visions, etc that if I better used my time I could see come to fruition.

So here it is my public acceptance that while yes I am doing the very best for Steve in being his caregiver, the rest of my time; I've been a hot damn mess.  I accept that most days I will not be able to do enough for Steve.  I can't take away his pain, or stop him from having to endure so much to stay alive; but I can be there with him fully present and allow him to experience this knowing he's not alone.  Then because he does enjoy alone time, I owe it to him and myself to be using it wisely.

So I'm going to be making a change.  I'm not saying it will be easy and I accept that, but it will sure as hell be worth it when I can go to bed at night knowing that my day was spent in mindful activity.  I want to know that I put my all into each day.  Because life is too short for the mindless distractions, and I'm a damn warrior-meant to do much more with my life.  So it's time I step up.

I'll still be here in the social media world, so you will still see me.  I just will not be spending hours mindlessly scrolling through a feed seeing things that may or may not even serve me.  It will be more dedicated to actual conversations with people who inspire me, people who support us, and hopefully it will be a place for me to continue mindful living.

Words from the flow.

Some of you really resonated with yesterdays blog, thank you for your feedback.  One message, suggested, I should follow up the blog with some thoughts from the flow days.  

Well, I happen to like that idea, and thankfully, I am blessed with a flow day, today.  So I shall take this feedback and run with it, or shall I say flow. :)

Allowing myself the space and freedom to have days where I do have down time is only part of why I am able to have such productive, energized, monumental, inspired flow days.  Those down time days, aren't spent in vein.  They are spent in the garden amongst flowers, or covered in paint, or time having netflix marathons with Steve, cuddles with the pups, extra time in meditation, chatting away with social media connections, do you get my point,...?

No?

Okay well, I find nourishing and comforting things to do when I feel the need for a little extra energy. I didn't always do this.  In fact Steve encouraged me to try this one day, and it's the most life changing decision I've made.  I used to spend those days sleeping in, or moping around, or not doing ANYTHING when I would feel the need for rest or pause;  and it would rarely refuel me. I was spinning my wheels working hard at this and that, doing what I could for Steve, and barely having the energy to do much else.

I had to have a shift.  It had to be this "Okay, if I need to just sit let me do it outside with the birds, the sun, the flowers, the breeze; or let me sit on my meditation matt."  or "Okay if I'm going to watch TV I'm going to do that with my best friend, who happens to spend most of his days watching TV.  I don't even have a remote to our bedroom TV Steve does it with his tobii, or working cable in the living room; because if I'm going to watch TV I want it to be with Steve."  

Another example if I haven't painted a clear picture, yes paint.  "So I'm feeling stir crazy, instead of allowing it to turn into anxiety, I should paint."  I used to pick fights with Steve because I wasn't allowing myself to really feel life, because I had zero coping skills.  So instead of FEELING the stir crazy, BREATHING through it, AND finding a NOURISHING ACTIVITY to do to use that energy, I would fight with Steve.  Steve thanks me for learning to live mindfully.  Trust me, he's been a pro at this for a while; I believe a terminal illness definitely puts you on the expert track to mindfulness.  

Steve and I have a beautiful bond and relationship now, but if you've followed us closely you will have heard both of us sharing openly the work it took us to get there.  The best decisions either of us ever made was to tap inside to see what made us flow, and what helped us get back to it.  What did we both enjoy so much, that we could physically could do; and will make us feel happy, inspired, and fulfilled.  Individually first, together next.  

It's not easy, but I promise it's worth it.  I shared mine with you all, and I'm sure some may wonder what Steve's is.  He loves painting days when he has the energy to get out of bed.  On the vast majority of days when he's needing to rest, he will work the stock market, edit my book (his brain is astounding), chat with his buddies on facebook, and of course follow his GA bulldogs (yes all year y'all, he loves him some dawgs).  

He finds joy in almost every simple moment that he isn't experiencing excruciating pain, and even then he still shows love.  I tell you it's beautiful to be around.  What an honor to spend my days with him.  

So there you have it my friends, some words; from the flow.  

The flow of life

It's interesting when you can let down your defenses when someone questions you about something, you will see how, what they really want is to understand you.  They want to learn more about you, and how we perceive that determines, if we can use it as a moment to teach others more intimate sides of ourselves or not.  

So recently I was asked, "Why I don't post more on Hopie Hippie?"

That simple question that I took and gave my own interpretation of, "They must think I sit at home and do nothing all day, or if she spent less time on the phone she could get things done."

Did any of the people say that when they asked me?  Of course not, those are judgments I have on myself.  Now of course it's obvious I don't sit around and do nothing all day taking care of an ALS patient is a full time job, but the phone thing; hey I love my social media community, I've grown a lot from them and the support is invaluable.  So it's not too much time, but it is a commitment of time.  

After I was able to let go of the made up drama it clicked, that it would be powerful to share with people about the way I live my days.  I start my days whenever I naturally wake up, which thankfully is usually 7:30.  Alarms wake Steve up and he needs his sleep, and thankfully because I don't HAVE to be up I don't use an alarm.  

I immediately check social media and emails and respond to people right when it's fresh on my mind while I soak up some puppy cuddles in bed.  I then do yoga and meditate before anything else, as it truly sets my day up with good energy, and me being entirely present.

That's the key to our life going well.  It's not about how many malas, weavings, paintings I make and sell.  Although I love creating days and put a lot of love and energy into my pieces as I love making them.  The most important key to me is how mindful and present am I today.  

Being entirely present and mindful in a 12 hour period is hard and it takes work.  It's a constant coming back to the moment, but days where I learn to follow the natural flows of life, are the days where I am able to be the most aware.  I'm a better caregiver, writer, creator, and all around person when I slow down the "I have to get this list of things done by this time" thinking and come back to, whatever I'm doing that day I really want to be there.  If I'm sitting outside and starring off into the sky, I'm going to be present and enjoy it.  Not feel guilty.  

This means some days I spend my whole day with Steve because he really needs me to, or on good days when he's kicking me out to watch his sports, I go with what I'm really feeling and drawn to. Intuitively I will walk over and pick up my journal and just start writing for hours on days when I have to work through life with words.  Some days I'll find myself walking aimlessly through the garden not really able to find the pull to do anything else, and then I'll have a garden day and really soak up that energy from momma earth to refill.  There are days where I'm pulled to weaving and malas and painting, so much, and there are days where I find myself lost and blissful; and those are great days.

However, the forcing life or creativity, just doesn't work for me.  Because I pour so much of myself into everything I do from taking care of Steve, to making our environment inspiring and interesting for us to spend our days in, to taking care of the pups and the garden, to every creation I make; I listen to myself and flow with life.  When I go against it, life shows me.  I'll fight with Steve because he's interrupting me while "I'm working" (I mean really), i'll make a mala and it's so half-assed it breaks (what's the point in that), I write crappy writing, or create something really uninspired and unoriginal.  

My way of living may not meet society's standards as to how one should consider oneself successful or not; and that's okay.  It's what works best for Steve and my life right this moment.  If you ask Steve, he can attest to my kindness and patience levels increasing as I allow myself just to experience life rather than constantly chase some number.  Trust me I'm still creating magic, and making my print on the world; I'm just not loosing myself and the ground I'm standing on in the process.  My life (and Steve) thank me for it.