When life gets complicated you adjust.

This will be my last blog for a little while.  I plan to take an extended social media break starting tomorrow, that will last for as long as I need it to. I'm using the full moon today, to jump start some changes, and for that reason I will be disconnecting so I can focus all of my energies on what's going on here.  As usual don't worry if something happens that is worth reporting, positive or negative, I'll let y'all know.  I appreciate how much you all do care about Steve & me, and how much you love to follow along with our journey.  

As most of you know, Steve's laundry list of complications have grown to an overwhelming amount. I don't always do the best job sharing this kind of stuff with you, so I want to go into it here.  This is just touching the surface, but will give you an idea on why it's hard for me to get anything done around here.  I consider it a huge blessing to be able to care for Steve, and the extra projects are never as important as taking care of Steve; but because he requires more time for me, I need to really get a grip on my "me" time and get a routine in so it's used best for my mental/physical well being.  

To start with we have the wound on Steve's left lower booty cheek, that's been there since April.  We are healing thankfully, and while we have decreased turning him by one day per week, we are still spending large quantities of time to assure we continue on the right path.  Steve's right lower lobe of his lung has collapsed on itself from this chronic infection he has had for 3 years now.  There's the constant trial of antibiotics, ranging from IV to feeding tube, that his body is slowly rejecting more and more.  He's currently on a break from all antibiotics due to extreme stomach complications from them.  Then comes the feeding tube, that because his body only gets fed IV foods (due to the gastroparesus) the 'holes' introduced to his body have all stretched; feeding tube included.  Now it leaks stomach acid on the hour, requiring immediate cleaning of the site and redressing.  The only way they will change his tube out from this point on is if it stops working, because the more they try to introduce new tubes, the more stretching we will have.  Now comes our biggest & scariest complication the trach.  If you followed us closely while we were in the hospital, you know Steve has the largest trach made, and unfortunately his trachea and stoma have deteriorated.  It's speculated these three things are the cause: from when Steve would violently vomit anything put in his stomach (back in his rapid approach to the 67 lbs days), the copious amounts of sputum in his lungs constantly trying to come out, and again he's fed IV.  The TPN (IV food) saved his life, but it only goes so far in nourishing, food (and water) really is life. So Steve's trach will now leak 5-6 times a day requiring extensive trach care, packing the stoma, and adjusting the cuff to stop the leak.  Of course, all while helping Steve maintain his calm.  Because of constant stomach problems, we have an absorption problem.  Doctors are unable to figure this out, because some days, Steve will be given his medication and he feels like he hasn't received any and some days he gets the same amount and he can't even open his eyes.  Since the overdose that happened in December because of the absorption problem, I have to monitor his alertness to determine dosage of medications.  Because there is no way for us to fully comprehend his body, there is no clear cut dosing for him anymore. 

So this is just the additional add on's to what ALS already presents us with.  If you've ever watched the movie, The Revenent, with Leonardo DiCaprio, most of us have compared him with Steve.  He is constantly facing challenges that can easily kill him, yet he overcomes every one, much like Steve. Every discussion with a doctor is the same thing, Steve's outliving everyone's expectations, and they really are all doing the best they can, and keep praising Steve on his strong will to live.  Both of us truly understanding this journey is a day to day, accepting that any number of these complications could be enough to take him, we are facing the impermanence of life daily.  Fortunately we also choose not to live in fear, and instead live in gratitude for everyday we do get.  That part was easy to adjust to, what hasn't been is how I should be spending the time when Steve's napping/resting/watching football.  Because it's all so much for my brain to comprehend some days I just walk laps around the house trying to decide what I want to do.  

So, until I can get a full grip on how to truly nourish myself with some down time everyday, I'll keep feeling depleted, overwhelmed, anxious, and frustrated.  I am okay health wise, so please don't get alarmed; when I explained this to some close friends they immediately became concerned that maybe I wasn't well.  I promise I'm okay, and this is to assure I continue to be.  I will of course be keeping up with my daily writing habits except mostly it will be for personal growth and the book.  If I write something exceptional while I'm gone, I'll tuck it away to share when I'm back.  

I'll leave with this simple truth:  If I can create a consistent, realistic, routine between Steve and myself, I can accomplish all I want to.  I know I am capable of all that comes to my mind, I know I can do better with my time, I know I can continue to maintain my vibrant health, and I know I can keep Steve going as long as he's in, I'm in.  I know I can do this all, but know it requires some changes that will take work.  SO, with that said, I will see you all as soon as I'm happy with the course we are on.  

If you need me and can't figure out how to reach me, email me hope.ann.cross@gmail.com  I will still check my email a couple times a week, and if you have my number of course text me.  Hopefully after I get a balance I'll actually get better at replying to people; although I wouldn't hold my breath (some things never change ;)).

We love you, and again thanks for caring, supporting, praying, etc.  You all help us so much more than you will ever know.  

Happy clouds

Flow state: A moment filled with that special energy of getting so much done with little effort (being in the zone), much like I imagine it looked like when God made clouds, or how it does look when Bob Ross paints them.

I, like most who experience a flow state, want to have the flow as much as possible, and I pursue it in ways to try to create the energy every day.  Because we are humans the flow state doesn't come to us everyday, even if we try all of our rituals, tricks, & routines. What trips me up is, having so many thoughts and ideas in my head that I just want to do them all, that even if I'm going against that current, damnit I still want to accomplish my tasks.

Recently I discovered that on days where the flow isn't there and I'm trudging against the current to get things done, I'm frustrated, anxious, and exhausted. I don't know why it actually took me this long to understand the frustrated periods. Watching Steve champion through the last 5 years, I've learned 3 important things from him (really 300,000 but there's no room for all of that), 1. Take advantage of the good days. 2. Live and enjoy every moment, even if it's not what you wanted that day, you take it and make the very damn best of it. 3. Really there's so many more important things in life, than to worry about taking a day off here and there.

Here's where I caution people, please do not tell me the cliche, "Slow down, you have time."

No I don't.  Neither do you.  Stop telling everyone we have time.  We don't.

If we did I wouldn't wake up praying that I get another day with Steve every single day, innocent people wouldn't get murdered, the earth wouldn't be rapidly warming up while people stand around acting like they can't do a damn thing about it.

We don't have time.  So naturally I don't want to waste it, but having the discernment to know how to take the ebs and flows and truly live in whatever moment life is presenting fully and openly, and making the best of them, adds some hours-days-weeks to the clock.

So what we have is choice to use our time wisely.  Not time. Choice to pursue the flow, accept the changing winds, and to really show up everyday no matter what it presents you with.

Guided by Nature

Sitting feeling the chill on my legs, and the wind blow through my hair, with peaks of sunlight squeezing through the trees.   Mosquito's reminding me that it's not quite autumn, but the smell of leaves in the air are screaming, "Home girl, hang tight, I'm coming." 

The nature surrounding me has become my best friend, much like it did as a child.  Guiding me through the many changes in life, teaching me to flow with the season change and utilize there energies.  So with the promise of autumn, I feel an ease of releasing things that are no longer serving me to make space for that new growth this spring.  

So in an effort to open people up to some self reflection for what they need to release I will share one of mine with you all.  Because, autumn is coming y'all! *Insert excited face* The thing of all things, that I'm learning to release is, me getting out of my own way.  I am more clever than you probably have ever seen of me; because instead of using my time properly, I find 101 excuses why I should just go with whatever the day brings me, instead of a routine/planned day. 

Learning more of my inner workings has helped me understand ways in which my wild works for me in amazing ways, and ways in which it doesn't at all. The ways it works are obvious, the ways it doesn't aren't, so let me state it; my rebellion for structure & routine.  I spoke yesterday on having to learn to establish realistic routines because I will use every excuse there is on this entire planet, not to stick to one.  

So around here there is no "Same thing we do everyday..." skit happening, because there is not same everyday.  Of course, when it comes to Steve I have routines with him, and I promise you as important as it is to stick to it with him, we both resist it.  Two wild seeds planted in one wild life together, is a lot of fun, and we grow, stretch, and really experience every moment; but it's not always the most productive of environments.

Let me preface this with; no we will not be turning into productive robots that pump out items like an assembly line.  It doesn't matter how many special powers the two of us may have, that isn't in the realm of possible with the two of us.  However, a little less resisting of some structure to allow for a little more follow through come spring, is my main dying leaf for autumn.  

So with each leaf that falls, it symbolizes my release for resisting the most fundamental ingredients to me reaching my highest potential; ritual, routines, follow through, and maintaining.  Thank you nature for always pushing me forward.  There's a reason once you find the connection with the earth and her ways, you will defend her with every ounce of energy you have.  I hope you all find this connection in your lifetime.  

I'm only here for the habit

There isn't a bone in my body that wanted to write this blog today.  It's not that I don't totally adore y'all, it's just that today has been hectic, and I don't want to show up to work today.  But, alas, here I am fingers to the keyboard, keeping a commitment I made to myself to create a habit of writing daily.Feeling more at home here in my writing desk, the more words I type. 

I've been doing a lot of reading about habits the past week, sort of by accident.  I ordered two books (one audio & one hard copy) because as I'm sure you're not surprised, I can't read one book at a time.   Both are going to an extensive length to stress the importance of habits; for daily life and creative life.  

I can't say if it didn't happen to rain at 6 PM today, I would be sitting here writing this, because I'm sure I would be out in the garden or playing outside.  As you can see the habit hasn't formed quite yet.  

Habit: In simplest terms possible: something that you do so often and regularly, sometimes without knowing that you are doing it.

When most think of the word habit, they think of the negative habits they or someone they love has.  Of course letting go of bad habits is important to make space for the good, but the creating of good habits is just as important.

So how does one start?  Well, I am learning it's as simple as that first cigarette you have at the park swing set, except it probably won't make your head spin or make you want to throw up.  Even if it does, still do it.  The key is to do it enough times, that it becomes part of your subconscious.  Choose your good habits as often as you find yourself nibbling on that fingernail without thinking about it.  

Find something that will make you show up everyday.  Routine helps, but as a caregiver allow me to remind you, an unrealistic routine can backfire.  Too many things happen here for me to get into a routine of "I must do this, at this same time," because that one time Steve's up and needs me during my routine and I crumble, snap, pop, and break down to no longer having one; just doesn't work.  

So to help me work to stick this habit, it isn't I show up at 7 AM every morning and write; it's I will find the space of time to sit at that desk and write something ANYTIME today, even if it's just a paragraph.  There now a realistic goal I can keep enough to help form the habit.  

So here it is, me learning how to form a healthy habit, in front of everyone.    You're welcome.  <3 

If you don't like my fire...(passionate one this time, not the green kind)

Had some laptop troubles this week, so the blog was on pause, but I'm back. :)

So, today I'm here to stir up some controversy to make up for my missed time.  

I had a boyfriend once, who had me convinced my purpose in life was to attend classes, come home clean/cook/ and wait for him to come home.  I lost most of my friends and most of myself to this guy. Suddenly one day, someone asked me to model for them, thus introducing me to new people.  I started modeling while finishing grad school, which lead me to new people reminding me that I have actual feelings, emotions, and imagine this, opinions.  

A few months into my new life, I watched a documentary that made all kinds of things click for me, that made me decide to be a vegetarian.  One day I brought this boyfriend to a party, and someone asked me about my new decision to not eat meat.  After I very thoughtfully explained my choice, he suggested it was time to leave.  On the way home he said, "You know you're much prettier, when you stand and smile, instead of speaking your mind so loudly."  

Of course, I smiled, and shut up like the good little girl I was at the time.  Thankfully this boyfriend did me the best favor of all time, and broke up with me shortly after.  Albeit in the worst way possible, but I was then sent on my way to find my voice again. I wish I could say I immediately regained my spine quickly, but it took several years for me to do so. From where I sit today, I will never allow someone to take away my voice again.  

This (past 5) year(s) I have had several people suggest things to me like, "You shouldn't be so vocal about causes when you're trying to push your own cause." "Maybe you should tone down the activism, people will stop following you." or the ever so common, "Maybe if you weren't lecturing me with this, I would hear what you're saying."  Another favorite, "You would be more successful if you chose 1 passion, and stuck with it."  "You care about too many things." 

Let me start this by saying, I'm forever grateful for a man like Steve to be on this journey with.  When we decided to share our story so vocally we also decided to share ourselves.  OUR REAL selves. Not only is Steve on board with me sharing myself, he is constantly reminding me not to loose myself in the midst of care-giving life.  This man is the ideal partner in a world where strong women are often silenced. Real men, really do empower women.  There will never be a time where Steve and I will remain quiet on something we feel passionate about because we might loose followers.  It's not the tribe we are trying to build here. 

On to the lecture comment, that if you saw a post I made this morning: I spoke on this happening twice this week alone.  That's just this week.  I've been told maybe a hundred times the past 5 years, the because I am strongly speaking out about something I believe in, it sounds like I'm lecturing everybody.  To me, I consider this statement to be insulting.  Now I know I'm perceiving it this way, much like those offended by my posts are perceiving my words as a lecture, and it's not always intended this way but I want to speak on this.  I've seen this phrase used to remind women, "You should be gentle, soft spoken, and tread lightly."  I'm here to say, women please roar; scream, shout, curse, speak as loudly and as passionately as you want.  Never let someone convince you that your passion, is too much.  If it is for them, that's not your fault.  They can simply choose not to read your posts.  It's that simple.  I will never allow someone else to silence me again, and I hope that every female reading this feels empowered to live the same.   

Last but not least; PEOPLE there is no such thing as too many passions or caring too much.  Please stop insulting my intelligence by thinking my mind is too little to hold all my many passions.  Maybe I don't want your definition of success for my life anyways.  Someone telling me I'm too passionate in my mind means, "Hope I think I know what your time is better used for."  Honey, no you don't.  

I beg of everyone reading this, two things.:
A. If someone is too much for you, simply remove them from your feed/life/whatever you have to do.  DO NOT TRY TO PUT OUT THEIR DAMN FIRE.
B. IF someone's trying to put out your fire, tell them to kindly move along, to somewhere far away from you.  

From idea to flow

Have you ever had a time where you have so many ideas running through your head, that you actually feel a bit tired from all that energy expended in your mind?  That's how I feel right now. Typical me (It's the Vata in me for those who know Ayurveda), just wants to run with every wild idea, and thinks that I can really take them all on.  So often I do attempt every wild idea, because until I try it on and see how it fits, I can't really discern if it's meant for me or not.  

I share this process a lot maybe without going into full detail, because I feel like so many of us have wild ideas, and we think, "oh it's just another one of those," and blow them off. Since I've decided to start trying on a few of these wild ideas; I have found weaving and gardening; two of my favorite things to do right now.  

When your mind won't stop, you do need to practice discernment in what you do pursue; but I think it's just as important to be open to the ideas.  I now try out these ideas, and then ask myself, does this feel aligned with my higher purpose?

"Wait, Hope, how do you know that?" You ask. 

Here's how I've learned to understand it.  If I'm working on something, and I suddenly feel in the flow, while I have an emotional response; such as joy, excitement, amusement, even sometimes fear, then it's probably meant for me.  If I feel the call to it multiple times a week to daily, and I continue to grow the ideas for this particular project, then it's one that sticks. If it's not for me, I will feel it; I will be disconnected to the project, I will loose the spark, or it will simply just repeatedly not work to where I finally realize I'm fighting with a much larger force than myself.  

Another question I've been asked, and know others are thinking, "How do you know what your higher purpose is?"

From my perspective, my higher purpose has revealed itself to me overtime.  I often chased certain things that I thought were my path towards my purpose, and prior to me being in tune with my feelings and intuitions thought I was on the right path, and eventually life came to dramatically steer me elsewhere.  I've come to find my purpose as this: learning to love deeply and pure through caring for Steve, really opening up to all sides of myself, writing about my life in some form everyday (whether journal, book, blog) because writing helps me process life and helps others grow. I need to create things that helps me feel that alive joyful feeling, and continue to grow an eco system in my backyard and work towards my goal of being totally self sustainable one day.  I will continue to be a warrior for our planet, for ALS, and for my freedom to be me.  

Don't be afraid to try things, and if it gives you that feeling of "I have to do this" then follow that feeling.  Don't allow it to become negative, protect it, practice and grow, and really trust your intuition.  It's constantly guiding you, if you just listen.  

Because after all, I'm not an alien.

From migraines to dealing with skeezy health insurance, my week isn't what I had planned for it.  Of course, by now in this journey I've grown accustomed to the ever changing winds.  Having goals and hopes for the week are great, but being open to what comes is really my trick to survival.

I caught myself saying something awful to Steve the other day, that I sometimes can't believe I share with you all.  Still the urge to type these words just won't leave me, so here I must again show my shadow to the world.  

I said, "Ugh this is totally ruining my day."  As I was working on something for him.  Translation that couldn't be lost here, 'You're ruining my day.' 

Steve, looking at me, tells me, "Hope Go," ignoring whatever it was that he needed at the time.  To which I properly stormed out and proceeded to tell the insurance company where to stick it.  Not my proudest moment. 

Why?  Right, why do I share these moments with you all?  Yeah, sometimes I ask myself that very question.  Truth is, I have so many people praise me on a daily basis, that my ego likes it, so days when I show the natural frustrations, I feel awful about myself.

It's probably no surprise to most that I would describe myself as an extremist.  So days when I do show my shadow, it's hard for me to accept.  I don't want to be that person.  I guess even a part of me doesn't want to be human at all, right?  I mean it has to be that extreme for me to expect myself never to say/do/think/feel anything negative.  

This is just another case of learning to roll with where the day takes me.  Sure I ate 3 cupcakes that day, and probably caused myself the migraine and I cussed out Steve, the dogs, and 5 different (innocent) people working for humana; but again, as I keep saying it doesn't make me a bad person.

So this is why.  This is why I share.  We (humans) often feel defeated after days like this, and I once did as well.  I would enter a state of self loathing, that would take me to a bottom of an empty hole, leaving me to have to crawl my way back out. Now I feel the need for pause, a need for some self love.  If I'm eating that many cupcakes and swearing at anyone I cross paths with (especially my dogs) then I need to stop trying to do it all.  

So I did.  Yesterday I didn't blog, and after doing the must do's with turning and cleaning Steve & making some must do phone calls, I shut off for the day and painted.  Then ending the day with another I ate too much sugar migraine I let go of judging myself for that day, and laid in bed with Steve (more like next to him in our 'I love Lucy' bed arrangement) and said, "It's okay.  It's all okay."  

So what's the lesson in these scattered words?  Let go of the judgement of yourself, when your shadow appears.  It should go without saying, that I obviously strive for my days not to be like this, and I would hope most of us do as well; but the off days shouldn't leave us hating ourselves.  It comes with life.  f we didn't have an off day on the occasion, we wouldn't be human, and as much as I like to pretend I'm an alien; I'm not.  I'm pretty sure you aren't either. :)