The itch of restlessness....

Today's word of the day: restless.  Some days I just wake up and I feel like I slept in a bed of ants. The only solution to this, normally, is to allow myself to sit in silence for a while. Today after a very unfocused yoga session, while attempting to meditate I scratched my head, face, neck, arms, etc 100 times in 20 minutes.  So much for sitting in silence.

Inhale. Exhale.  

What does one do when they can't even do the one thing that always calms them?  Well, the high school runner in me just felt the itch, literally, to run.  Well, it's not like I can just leave to go run the neighborhood, I tried owning a treadmill once; that ended up being a laundry rack.  So, what's a girl to do when she needs to release some energy?

She runs, back and forth on her deck until she can't run anymore.  The dogs both running with me confused as to why I'm just running to run and not trying to chase a squirrel or one of our many backyard pets.  I ran for about 20 minutes laughing at myself tripping over the dogs, watching Steve the several times I passed the french doors in our bedroom give me the look of confusion.  He's in there thinking, "Now what's that woman of mine out there doing now?"

I was spending about 30 minutes after I attempted to meditate trying to determine, what I needed to calm me, what I should blog on, what I needed to do with my day, etc; and then when I let all the "what SHOULD I be doings" all go, and just started running, it became clear to me.

Let go Hope.  I just kept thinking it over and over.  Let go. Let go.  

This past hospital visit, I was kindly named the control freak. :)  It's okay to be the hovering caregiver, especially when I'm his biggest advocate; but to try to control EVERYTHING in life, is not working.  I was trying to CONTROL the energy rather than letting it go.  

Of course, releasing control of things doesn't mean becoming lax and not taking care of my responsibilities.  A friend of mine came to visit this past week, and she said to me something she read, "Instead of giving yourself a list of things you SHOULD be doing, think of it as if I really wanted I could do this today."  To start seeing myself as capable of doing the things, and releasing some pressure.  Realizing that most of the course of the day is out of my control, and what I do have control of is my reactions.  

So there you have it.  Unconventional running mornings for the win.  

What do you need to let go of? I'm sure I'm not alone here.  Share with me, if you're up for it. xox

Listening to your feelings, to navigate your need for balance.

We have an owl that lives in our backyard, and today while I was reading my earth medicine daily readings, I heard the owl talking to me.  So I stopped and really focused on what I was reading and it said, "The will is directed by our emotions and intuitive feelings,  When we are cut of from these feelings, we enter a state of confusion."  

Something that life continues to teach me, is that without balance, I will be knocked off my path. When I'm in the flow, and I'm too focused on going, doing, creating, making, helping, doing, going, going, going....I always end up somewhere off path, lost searching around surrounded by trees and no clear idea how I got there; confused, unfocused, and frustrated.  However, if I remember to find the balance of work and play, flow and pause, going and stopping; I can enjoy the beauty along the path without getting lost so many times.  If I trust my feelings and allow them to determine the pace, I find myself focused, happy, peaceful, healthy, and all the good adjectives. 

I have become pretty clear on what I want my life to be, and I've gotten pretty in tune with my self, that if I really stop and listen to what I'm feeling, it guides me.  My biggest challenge I will have to overcome is  that when I'm feeling overwhelmed instead of taking a break; I forge on through.  Because, to me taking a break sometimes is making excuses.  I should be doing this, I have all this to do, I want to be doing all this, ideas, needs, responsibilities, .... Then I reach the not so pretty crash and burn further down after weeks or months not listening to that need for a breather.  It's a cycle, that is up to me to put an end to. 

If I actually stay in tune to myself instead of trying to allow others to determine my flow of life, I find myself in my favorite day dream.  Okay, let me paint it for you. :)

If any of you are Incubus fans, this song is playing, Aqueous Transmission.  I'm laying safe on a raft and floating down a river, perfect flow.  I see what's going on around me, I can process it & feel it.  I grow, I learn, and I make impact on people I'm passing by.  Life seems to flow to the pace that serves me best, and even when the rapids get rough, I'm strong enough to hold on.  

I am starting to listen.  Yesterday we ended up having to turn Steve twice, and I really felt depleted and sick going to bed last night.  I had a mental fog, sore throat, and barely any energy.  I turned off my alarm, and slept until 8:30 today. Which, I haven't done in a few months.  I value my morning time, so I'm usually up and going by 6:30.  That extra sleep helped any signs of the sickies coming to go away, as well as helped me regain some focus.  Life is all about paying attention to your feelings to keep your balance.  

Learning to better use my energy and time, will ultimately be the biggest thing I learn in life.  Yeah, you read that correctly.  I have so much I want to do in life, and learning how to keep my balance while I strive; is how I'll make the impact on the world, that I can do.  Listen to your inner self because your intuition is always there to guide if, if you just tune in.  

Specifics.

For those that follow my blog, you notice I took my social media cleanse to total silence half way through, which ultimately was interrupted by a hospital visit.  Well, I'm back. :) 

As I'm slowly easing back into a routine, that I loose even with such a short hospital visit; I am slowly clearing the hospital/sleep deprived/anxious fog.  I want to start this blog with some gratitude:
 1. Steve didn't want to go to the hospital, but after a full night and morning of this anxiety/breathing stuff he decided it was time to go.  He didn't have to change his mind, but I'm so thankful he did.  We were able to get a lot done in the hospital, that helped ease my mind of a lot of unknown.   It's a beautiful blessing to me and all who get to witness his journey the determination he shows, while showing up with love and kindness and a smile through it all.  
2. On this same topic, the hospital staff all understand Steve's wishes to be home, and they hustled.  If you follow facebook you saw all he had done, but here is a list for those who want to know.  Trache change, discovering a collapsed right lobe in lung (chronic pneumonia & ALS), vent setting changes, bronchoscopy, picc line change, cultures on everything (literally), discovering new infections, removal of ingrown infected toenail, wound care, ultra sounds, new foley catheter,  list of new orders to make life easier at home, & a blood transfusion.  Also, they never give up on us, no matter how many complications we add to the list they are always willing to work through everything with us.
3.  My in laws for all their help the past month or so.  Lots has been happening that requires a load of extra help.  When our list of people to call on becomes less and less, despite them being in their 70s are there at the drop of a hat to help me with Steve.  Often days, when I have NO one else.  Literally. 
4. Our home health team (pharmacy, nursing, aid, & respiratory):  ya'll always ride the waves with us. We couldn't do this journey with out you.
5. Wrap it up with a thank you to those who step up when we are sinking.  Without hesitation or excuses you come to our aide.  There's too many to list, but you know who you are. 

As I continue to get Steve and I settled, and we incorporate some new things into our routine, my main focus will be researching ways to rid these infections.  What once was a colonized lung infection has started spreading to multiple areas.  Is it alarming?  Of course.  I won't sugar coat it. There were no words needed in the hospital as the cultures began growing more and more, everyone's faces read what they needed to say.  No one wants to see Steve have more battle added to his list.  It's just a lot, and it's hard.  

So yes I am feeling that reality, but I will not give up hope.  Just as Steve is still doing his best to live life on his terms, as he's shining that light from within; I will do my best to help ease some of the burden on his body.  As a caregiver, I used to feel the need to defend myself with outsiders on why this was happening to Steve.  I would constantly explain my actions, and feel like I had something to prove to everyone.  If I'm honest I don't know why I'm writing this in past tense. Before leaving for the hospital I begged Steve to finally let me wash his hair, because I didn't want to deal with all the judgmental stares and comments.  Of course, he was too sick to worry about his hair, and my ego needed to take a back seat.  There were indeed a few comments, but mostly as I worked hard to change my perspective I was able to see that it's all me. 

Truth is, much of why things happen to Steve is unknown, and much is the fact that because he has gastroparesus and doesn't get to eat real food; his body can only do so much.  An Ayurvedic proverb I learned in class was "When diet is wrong, medicine is of no use.  When diet is correct, medicine is of no need."  While, we are so blessed with the best team to follow Steve weekly for his TPN (IV nutrition) and it saved his life, and continues to do so; it only goes so far.

So, now that we have an almost healed sore on that booty instead of a scary not healing sore; we can begin to plan our action to get that stomach accepting some nutrition.  That's first, second is herbal remedies that he can tolerate also.    We did start this after our last hospital visit, but we immediately stopped when the sore came because of bathroom talk.  When you are fed IV food, BMs happen once every other week or so, instead of the goal of daily with food by stomach.  With a sore down there, and having just overcome sepsis, Steve put up the stop sign on the stomach; for good reasons.  

If you've ever wanted to know how to pray specifically for Steve or what to visualize for him, here it is.  Heal sore, stomach begin to tolerate foods, stomach also to tolerate some natural remedies, and infections to clear.  

I know that Steve's exhausted, he's been literally battling (people often tell me not to use that word, but that is the TRUTH) for his life this entire year. As long as he does I'm right there beside him.

Onward & upward warriors.  

disconnected feelings and thoughts...

Some days when I sit to write a blog, I have clear words floating in my head I can't wait to let flow out of my finger tips, some days I write straight from my journal from thoughts that arouse the day before; and then some days like today, I write and hit back space at least 10 times before words start to formulate any coherent sentences.  

Suddenly closing my eyes, I tried to make out what was going on most in my head today.  The full moon is one, but not everyone (ahem mom) understands my fascination with the moon...All I can see are a bunch of different thoughts floating around.  As I am sitting here typing, I have about 30 of them floating around playing bumper cars with one another. How am I supposed to get my thoughts coherent today?  

So instead of thoughts, I closed my eyes to listen to my heart.  What do I feel today?  I feel the moon :), I feel the Mondays, I feel....breathe and really open up to listening.

Great, I don't even know what I'm feeling today?  How am I so disconnected from myself?  I'm in full preparation mode.  It's Monday.  Any minute now it's time for Steve's bath and wound care, then later this afternoon it's time for nurse to do her weekly visit.  There's some planning that needs to be done as well today for future appointments.  

That is literally ALL I CAN THINK ABOUT, and I think it's all I'm feeling; is the need to be prepared.  Maybe its the idea of summer solstice, right?  Maybe all I should be thinking about is preparing for all that needs it?  

Either way this disconnect from myself feeling anything and unable to focus, is an important thing to recognize, and maybe that's all there is for me to do today.  Recognize it, sit with it, and then work through it.  I don't know.  Maybe I'll give in to it, and just let this be the blog for the day.  

Because this isn't the first time this has happened, but it's the first time I've sat with the feeling instead of burying my head into my phone as a distraction from the uncomfortable feeling of not knowing what I'm feeling...

This blog has been brought to you by real life. 

Holding space for others.

Now that I have a better understanding of holding space for myself, I'm starting to be able to see, more clearly, how to hold space better for others.  For a while I felt like I was doing an excellent job at doing this with Steve; but recently I've been able to see that I can only hold space for someone if I can truly sit with them, and not put my feelings on to them.

The blog I wrote when Steve first got out of the hospital this last visit, was my most viewed blog I've written; because I think it was the start of me truly accepting some hard truths. I'm starting to truly absorb and sit with them. Even yesterday while, chatting with Steve and his parents about some ongoing symptoms happening with Steve, and the question on which steps to take.  Of course, when the hospital is mentioned, Steve says, "No hospital please."

My first reaction on a typical basis is to then spend some time trying to convince him to change his mind.  Yesterday however it was sort of different.  

He calls the shots now, so we sat for a while yesterday and talked it out.  Okay, if the hospital isn't an option, let's find another one.  One that Steve's agreeable with.  Steve's not giving up and doesn't plan to anytime soon, so I am counting my blessings on that; but he doesn't want to do so much intervention anymore.

He said, "If it's my time, I'm ready; and until then I'll live the best I can."  

His message was heard for maybe the first time by me.  I used to get so confused on how to accept that he is still going to put his energy in living the fullest life he can; while no more hospital interventions.  Yesterday I heard him say, "allow me to live this life how I can best be happy and positive," without saying it. He's happy at home, he's comfortable, in control, surrounded by art and nature, he has his peace when he wants it, and he doesn't want anyone else to take care of him, but me.  So that's what he will get. :) 

So we now have a much less traumatic and invasive plan to help solve some complications (mainly based around a picc line malfunction) and I feel peace.  He's still here.  He's still willing to do the work, it's just on his terms.  I can now hold space for him as he is living the best way he knows how with ALS; and it's beautiful. <3 

Give yourself space...

So something is coming to a head these past few days, that has given me some serious clarity.  For more time than I can remember, truthfully, I would get deeply offended by people offering me unsolicited advice.  It was an interesting automatic response that I would then fight myself over. How could I get mad at someone for offering me knowledge?  

Especially some of the people, being so knowledgeable, how is it okay for me to be put off by them? I would often try to hide my inner annoyance but I'm not very good at the whole fake it til you make it thing.  I'm pretty transparent for the most part, so a lot of people offering me good wisdom, were then put off by my resistance to hear them. 

I didn't truly understand it or actually try to for a long time.  Suddenly yesterday it was like the clouds parted and the sun came out, I finally had an understanding as to why it's bothered me for so long. For a long time I have perceived myself as incapable of a lot of things; but mostly I saw myself as a lost girl who will never be able to comprehend it all. 

Because I was perceiving myself this way, I felt like everyone else was too.  Were these people actually seeing me this way?  I'll probably never really know that, and that's not even important.  It's how I perceive it, and why do I?

In the past 5 years I've barely given myself the space to absorb it all.  All the stretching, growing, learning, etc.  I wonder how many of us do this to ourselves?  Get so caught in life without actually giving ourselves the space to understand it.  

What do I mean by space?

Taking time, where you shut out the noise around you, and listen to yourself.  Turn off the TV, disconnect from the internet, don't talk to others about what's going on, etc.  Yesterday I wrote for hours, pouring the words out on to the pages, and as they came flowing out so did so many answers.  

There's lots to process, but to start with I'm going to work on how I perceive myself. Because the truth is that's what rules the rest of it.  If I see myself as incapable, how am I ever going to be capable? 

Guess what?!  I AM capable.  I AM intelligent.  I AM in charge of my truth.  MY truth. 

Anyone needing space to process anything? 

 If so, take it.  Don't wait.  I obviously am doing it on my terms, so can you.  I'm still here for Steve, and he's in my space; and that's okay.  You can make your situation work for you, as long as you want it to.  

From the eye of the storm...

As some of you have seen I'm going to be taking a little social media hiatus, for an unknown time. Could be a week, could be two; it depends on how much time I need.  I have been feeling a lot of additional anxiety and pressure, and as I wrote on all social media, I was beginning to feel like I had 100 lb weights on my chest.  It was suffocating and overwhelming.

After I wrote yesterdays blog I went to check on Steve, and suddenly I had a thought.  I am treating Steve like a burden,  because the truth is I have let so many things pile up undone around me, that everything feels like a burden.  Of course Steve's not a burden, and thankfully he knows that, it's just me feeling overwhelmed; but that's where the social media break comes in.

It's time to clear off my huge list of things I've let behind. Which I will need all the energy I have to catch up while still being present in our current state of chaos ALS brings. 

So as we are laying in bed watching a movie last night, half a day into my social media cleanse; Steve suddenly says, "I can't breathe."

So many different things make Steve feel this way, I have to start with my list of explanations.  I first check his color in his face.  Okay he's bright red, not white or purple, so that's good. I check his vent numbers, title volume 404, that's what we want, so that's good.  I check his temperature, 98.8, no fever, so that's good.  It's 9 o'clock so I say, "Why don't I give you your meds and if you fall asleep it's probably anxiety, and let's see how you are in the morning.?"  Ok, he says, as this is almost a regular things these days.  

He isn't awake yet, but for the past two months this is happening several times a week.  It's beyond exhausting for both of us, because it's a question game.  Are we doing the right thing not going to the hospital?  Is it anxiety?  Is something brewing?

Thankfully Steve gets labs done weekly, and I can use the little information that provides us with to usually tell, but little by little it's worn the confident caregiver down to a weary, anxious, hot mess.  

This is just one of the factors of what's been happening the past few months.  I've written about the sore.  It's obvious that his healing is improved the more often we do wound care, in fact if he takes more than one day off, it goes backwards.  So we have worked out a schedule where we are doing wound care 5 days a week.  Little by little, that's eating away at my energy, because as I've written about before, watching the one you love suffer being turned while cleaning a sore on his bottom; is hard.  

All in all, I thought I was coping well, but turns out I wasn't really coping at all.  I started putting things off since the last hospital visit which was over 2 months ago, and haven't been able to catch up with ANYTHING.  It's like I'm a puppy, who can't decide which toy to play with.  Should I make these orders, or get my taxes done, how about finishing my Ayurveda class (I took my final this week, finally, and then had a cupcake to celebrate), or how about.....the list is boring and goes on.

Point is, I need all the energy I have left inside of me to truly get back on track, to get Steve back on track, our life back on track.... Social media takes up a lot of my time because it's truthfully how I interact with 90% of the people we interact with.  

I know Steve and I are often stretched, pulled, and tossed around so we will continue to grow and continue to inspire those around us; but in order to have that positive impact we want, we have to keep it together right now.  

I will be blogging daily, because this has helped me get some accountability back in my life.  Making sure I blog after I do yoga and meditate is building some consistency that I so desperately need right now. 

Thanks for supporting us near and far, and for loving us.  You all help us in more ways than I could ever explain.  

Sometimes being authentic is hard hard hard....but self love helps.

In an effort to be authentic with ya'all, I will tell you today I woke up in a pool of self loathing, that even writing a blog seems like a facade.  Let me explain a little bit of what I mean.  

I've grown to see myself how I want to be, as it helps me to be the person I want to be.  I want to be loving, kind, patient, strong, supportive, open, and authentic. Well yesterday and last night for reasons I can't always understand snippy Hope came out and well, I of course made it a point to make Steve feel like a burden for waking me up in the middle of the night.  I think the words were, "Ugh have respect for my time and stop being so needy when I'm sleeping."  

Insert the defeated emoji face.  It breaks me, to see me like this.  

So some of you are thinking, Hope you're being hard on yourself, middle of the night grumpies are normal.  Sure?  Maybe they used to be normal, but I don't want to be grumpy for my helpless husband needing me in the middle of the night.  So it made me feel pretty crappy today.  

Just one day of being less than I want makes me sad, because I WANT to be that person I see myself as.  I want to be loving, patient, kind, and supportive.  I don't want to snap just because I'm a little weary.  While meditating today, the words were floating around in my head, this is MY time, stop interrupting it. I kept trying to shake them away, and on one exhale Marlowe (our black lab) came over to me unprompted and started kissing my face. She's always so in tune to me.

She was showing me love, and somehow my thoughts shifted in that moment; to show myself some love today.  With love comes forgiveness.  Gosh, the amount of times Steve and I have forgiven each other and ourselves, it's what marriage is about right.  Forgiveness. Honestly, it's what life is about.   I started breathing the word, forgiveness, in and really focus on feeling it.  By the end of the 20 minutes I knew I felt okay enough to get through our wound care morning without beating myself up; and I also knew I needed to blog about it.

I know some of you may wonder why I share these things.  I know you're wondering it because sometimes I wonder it myself, but truth is; the more vulnerable and real I am with everyone the more we all grow.  It helps me grow to hold myself accountable and share the dark sides and how I work through them, and I hope it gives everyone courage to be able to look at theirs too.  Looking at our weaknesses isn't fun, but it's powerful.  

So today, after wound care, I have a self love date with myself.  Because as much love as I put out to Steve and others in our world, I need to make sure I'm giving myself the same.  Often times I'm leaving myself weary by trying to be everything for everyone and these episode of grumpies are often an indicator that it's time to take a break from super hope and work on some self love time.  

Today's self love = messy paint times.  My favorite thing.

Again I use feedback to prompt writing...

I have come to realize that the feedback that you all give us so generously in all forums, greatly influences my writing.  In this journey, and I'm sure many others can relate, I don't always know what to share and what to keep to myself.  I've always been sort of an over sharer, I'm just really an open book; but sometimes the vulnerability can leave me wanting to hide in the closet instead of sharing.

So yesterday I got a message from someone asking me, "How do you outwardly appear so happy but also share the struggle you have with ALS?"  This person explained to me how they had been a caregiver for someone with ALS and that they struggled with this everyday; trying to find joy in the rubble as they put it.  They then asked, "How does one know if you're being genuine when you share one story about your struggle, and in the same day you're posing with your paintings smiling?"

So this is a fair question, and I hope y'all don't mind that I tend to blog from feedback. Honestly, it just makes me think if one persons thinking it, I'm sure others are too; so why not use it as a prompt as to what to blog about.  *Also note, this person did not have bad intentions, so no negative thinking towards them; they asked a question from the heart and I appreciate it.  

You all know this by now, that I don't like using overused quotes; but sometimes they are so relevant I can't help it.  So.

"Not everyday is good, but something good happens everyday." 

This quote is what first came to mind when I was reading this message, but it's really much more than just these simple words.  Truth is that yes we are in the thick of it.  Steve's been on this journey for 5 years this August, and when I think of the complications he's faced it astounds me; his beautiful spirit has not been broken.  I sometimes look back and wonder how we've made it through each trial, because this one currently seems like it's going to break us.  

We've had this sore now for a month and a half, and we've made strides in healing it mainly by doing wound care almost everyday.  That's excruciating pain for Steve for hours at a time everyday. It's exhausting for all involved, while also encouraging.  As Steve moves more, the movement becomes a tiny bit less traumatic each day, his lungs are showing signs of clearing for the first time in 4 years, and the sore is healing.  Nothing will teach you patience quite like waiting for a sore to heal, they take time.  

So as we are making progress we see a light at the end of the tunnel when suddenly Steve gets a hemorrhoid.  Steve already having anemia of chronic diseases, when he looses any blood his body wants to shut down.  We went a tiny step backwards on the progress of healing because his body had to use all it's strength to rebuild blood.  (Note: If you're pALS has this, pure absorb liquid iron is your secret weapon).

So again, we are hit.  It's hard not to give in to that defeated feeling, but this is the most important thing, is to not give in.  The truth is yes these days are hard, and we are feeling a bit weary, and poor Steve has no energy to even type on the tobii, to play the stock market, or even follow his sports like he loves.  One thing it can't take however, is the joy that Steve's still here with us.  He's still choosing to battle this disease and he's doing it on his terms; at home in his bed surrounded by pups, birds, friends, and family.  He still gives me a smile every time I walk in the room, and he still gets excited with every bird that comes to visit.  Truth is, as long as he's still alive, I'm thankful.  As long as he's still able to smile at me and give me that twinkle in his eye, of course I will still find joy in my life. 

 If I don't find a way to refuel everyday for Steve, I wouldn't be able to do this job.  It's hard and it affects me, you may not see it; but take one look at my skin and it shows.  Of course it's hard to see the one you love most struggle, but it's also inspiring and a poignant reminder.  How could I not see everyday as a gift, and find the beauty all around us everyday?  How could I not, when him being ALIVE today is the biggest gift of all.  He still smiles after we finally get him comfortable from moving and says, "Thank you for helping me I love you."  How can I not see the beauty in that?  

So yes, while I feel the struggle of this journey, I also feel the gift.  The gift is I have my hands, legs, eyes, mobility, I can breathe on my own, I have a voice, I have talents that sure as hell don't deserve to be wasted,...  So yes, I will share how much we are struggling with this situation currently and then I will paint it out (or whatever activity I choose that day).  Some days all I can muster to be thankful for is another day around the sun, and that's okay.  Trust me the days you don't see smiling photos with me covered in paint are the days, I'm just sitting and starring at the fish swimming in my pond offering thanks for just making it through the day. 

I hope this helps some of you in the struggle.  I know it's hard to find the beauty because some days it's so hidden in the muck, but t's still there. 

First action, then prayer.

I've been sharing with you all my recent journey to feel life, even the hard stuff.  To really face it, sit in it, and come out the other side.

Yesterday I couldn't figure out "how to sit" with all that was going on around me.  Between things with Steve and the world I was feeling too much.  In conversation there have been several people (who I won't call out on the blog), tell me "Give it to God and let it go," or the popular, "Give it light and love and let it go." 

So sure, there is a time and a place for these phrases.  However, I feel like there's been a lot of giving it to God and not a lot of action.  We need action.  I understand I'm limited with what I can do in our situation and that trying to take on too much is useless because it will lead to burn out and frustration.

For whatever reason people like to read what I write in different forums, and for that it makes me feel like this is my call to action.  To use my voice to speak out for what I believe in.  If we all used whatever skills we had to bring action and change instead of just giving it to God, we can make a much bigger difference.  Interestingly enough the Dali Lama talked about it yesterday.  He said, "Real change comes through action....then on top of that some prayer."

This is how I imagine God when he hears prayer and sees very little action.   (note:I'm not quoting or suggesting by any means I know what God thinks, just making a point.)

Insert prayer for planet/country/violence.
God, "I would love to help you dear ones, just as soon as you all learn to help yourselves."

In my mind I feel like it is OUR responsibility as humans to solve problems we've created.  What can we do?  I've been doing some serious brain storming on what I can do, and the best I've come up with is to write about it.  So I will be over the next several days, in hopes that it can inspire those WHO can, to DO.  Most of us are capable of doing SOMETHING to help.  

Here's one thought I will leave you with and will blog about this subject a little more in depth the next couple days.  I keep thinking about the saying, "Hurt people, hurt people." Are we reaching out to those hurting around us?  There's so many stories and different speculations about why this man decided to shoot 50 people and injure many more; and from what I can see is that he was a hurt person, who decided to hurt other people to try to stop the hurt.  

If you see someone hurting.  Talk to them, hear them, send them love.   The more we try to connect with one another the more we can try to eliminate the hate, the pain, and the senseless violence.  I know my time is limited and I don't have it to put on my therapist cap for everyone I come in contact with, but if I listen to just one hurting person, and can help them feel loved and come back to love; I've done enough.  We don't have to think about helping everyone, because only one person did this crime this past weekend.  If someone had gotten to talk to him where would we be today?  

Where do you feel called to action? Share with me if you're feeling it. 

I love you all. xo

Love really is the answer

Okay i'll be honest my emotions are all over the place today.  Between the journey we've been on with Steve the past few months and the Orlando tragedy yesterday, I can't think of anything more important to write about than love.

Love after all is what fuels me on days like today where I'm getting ready to do our 2 hour bath/wound care/positioning with Steve in 30 minutes.  How am I going to do it my weary mind thinks? The answer is love.

The only answer I have to the massive amount of hate that was shown in this Orlando tragedy is to show more love.  I have always wanted to leave a positive impact on people I come in contact with, but truth be told it's those out there that don't see love that I need to reach.  Those that are full of hate, anger, hurt, or whatever it is; those are the people I want to reach.  Those are the people we NEED to reach.  If I could help one person who feels nothing but hatred and anger to feel love, and to give love.  Then i'll be making the impact I want on the world.

That's what I want.  I want to reach those who are so far to the dark side, they think what they did was okay.  I don't have to understand why they think it's okay even, I just have to show them that LOVE really is what the answer is.  Love is the only thing that will fix all the madness going on in the world. 

So today I am going to do the only thing I know how to do, I am going to take some time out of my day and send out love.  I will send it to every family member who lost someone in this senseless act, to every single person in the club that night, to their friends and family, to the whole LGBT community, to our whole world, and yes; even to the man who did this hate crime.  Because clearly he needs love.  

Show everyone you meet love, and allow it to fuel you.  Let's be the difference we need in this country.  No more pointing fingers as to who was in the wrong; we already know the answers to that. Let's make it stop already.  No more violence, no more senseless tragedies, no more hate.  ONLY LOVE.  
Love will find a way. <3

Inspiration.

in·spi·ra·tion

ˌinspəˈrāSH(ə)n/

noun

1. 1.

   the process of being mentally stimulated to do or feel something, especially to do something creative.

   "Helen had one of her flashes of inspiration"

   synonyms:

   creativity, inventiveness, innovation, ingenuity, genius, imagination, originality; More
2. 2.

   the drawing in of breath; inhalation.

What a beautiful word with beautiful meaning.  

I'd like to think we all want inspired lives.  We all want those moments of inspired creativity in whatever area of work we do.  The author is inspired to finish his book, painter, scientist, designer, creator, etc.  We all draw sources of inspiration in our life.  We make inspo boards to look at to draw ideas from, we hang pictures of our inspirations, we create spaces to seek inspiration from, surround ourselves with people who inspire us, follow their lives on the internet world, we watch the movies, listen to the songs, etc....

Then I read number 2.  The drawing in of breath; inhalation.  It makes me think of another interpretation of this; how often do we inspire ourselves?  I know I draw a lot of inspiration from people around me, and one of my favorite compliments is when someone tells me I've inspired them.  It's a moment where I can see me living my life out loud has positively impacted someone else's life.  Don't we all want that?  Of course, but what about inspiring ourselves?  We take the beautiful gift of drawing in a breath, and we allow that to truly be inspiration.  

Let me make this as simple as I can.  The act of being able to draw in air into your own lungs without a machine is pretty damn inspirational.  You have that ability.  What a gift to be given.  I don't know how often we think about it when we take in a breath, unless it's intentional; that this breath I'm breathing is inspired living.  If we can all look at life this way think of the things we could do in our lives.  Constantly inspired by the act of taking in a breath.  

Let's live life more in awe.  Inspired by things we easily take for granted.  In case this isn't sinking in here are some simple examples: "I'm so inspired by my ability to move my legs, I think i'll go for a walk today." "I'm so inspired by my ability to see, I think i'll look deeply at EVERYTHING I see on my walk."  I'm so inspired by my ability to breath, I think I'll write about it."  "I'm so inspired by my ability to use my hands, I think I'll create with them."................

Every moment of this life can offer those beautiful moments of inspired living.  Don't let that magic go.  Don't forget that simply being able to breathe on your own, is inspiration enough to live your life the way you've always wanted to.

This is for my cheer leading squad

Okay so I know I have been doing a lot of honest calling myself out lately, and there's a group of you, that I will now call my cheerleaders, who are worried that I'm not taking the time to reflect on the goodness I possess; while I find these areas of growth.  So today, i'll blog on some strengths to assure you I am really quite good at giving myself praise.  Truth is, I really wasn't good at looking at the shadows. 

So, I will acknowledge that my job is one of the hardest in the world; it's devastating, exhausting, draining, challenging, and ever changing.  The silver lining is that my paycheck is in form of kisses, snuggles, boopy surprises, and all around LOVE.  I talk about Steve and I fighting, because I truly believe if we all would talk about the dark places, and actually face them and work them out, everyone can have a bond like Steve and I.  What I don't talk about often on here is how much I love him, and how wonderful most of our days are, our team work, and connection; and I think the reason I do that is because we SHOW that more than talk about it.  

One of the things I did when first stepping into this role was a little ceremony with myself where I asked God to help me learn and grow and become the best version of me during this.  I had no idea what that would mean!  Growth like this, that I wanted for my life, was something that couldn't come without facing challenges.  Well, I knew I would be facing a lot of challenges beside Steve, and I wanted it to help me.  Then I had the same ceremony with Steve.  We set intentions for our bond to grow, our connection, love, understanding, strength...

Obviously, I will say, that making that choice, and being an active participant in this life, has served me (us) well.  I am happy with who I am as person today.  The reason I write about the dark stuff, is because in order to really become happy with who you are, you have to really accept all sides of you.  Now that I see the dark I am also able to actively working on bringing them more to the light side.  I do like to acknowledge my growth and strides I make, and I don't always share with others, unless you're in my immediate circle.  So yes, here it is in writing, I know I am blessing Steve's life with being here for him everyday and all that goes with it. I know that I am growing and learning and changing, and making positive impacts.  I'm so grateful for it!

The important side in that is that Steve's blessing my life equally.  We are equals in this journey and if I will give myself some accolades he deserves them too.  He equally wanted to grow and become stronger with this, if his mind wasn't the amazingly powerful machine that it is today, he wouldn't be able to do all he has to.  Steve's list of ALS induced complications are too long to list here, but through it all he still remains the humble, sweet, loving, funny, strong, warrior he is.  His energy is so limited today but he will still find time to chat with his other pALS needing Steve's encouragement, and still find ways to share this journey with you all, and shower me with love.  

So yes I've grown, and I'm truly pleased with where I am.  I will always have work to do, because I'm human; but most importantly I would like to thank Steve for growing with me.  That's why we have made it where we are.  We did it together.  It's a beautiful journey and for those of you who might be afraid of facing a challenge with a loved one, don't let fear lead.  It will be hard but if you go at this together with love, you both will be amazed with what life has to offer you.  

Thank you all for reminding me to share with you, that yes I am light.  For the record for y'all, so ARE YOU. xox

I have a confession...

I haven't really said anything on the internets about my not drinking this year.  Mainly because I wasn't sure what it was.  I just felt like I needed to stop drinking, but I mostly was using the reason, "My skins in rough shape, let's help my body by eliminating some things/foods and help my body deal with this intense amount of stress I take on each day." 

Sure so I stopped dairy 100% also, but that was easy.  So I call myself 97% vegan.  I just love eggs, and free range chickens with beautiful lives bring me these babes, so they stay. 

Still alcohol actually was easy also.  I tried to quit smoking cigarettes maybe 200 times before I actually quit.  I've never tried to stop drinking.  I've had a relationship with alcohol before I was born, (no my mom didn't drink while pregnant), it's just in my family.  I was so afraid of that little bit of cray that lives in my mom growing up.  (Look I got it too, part of intentional living is owning all sides of you.) So I didn't drink much mostly growing up, because I couldn't ever lie to her, she always knew.  

Until I met the older boy.  We all know where it goes from there.  Insert party girl phase.  I won't go into detail here, trust me I share all kinds of not so flattering stories in my book.  I loved parties, and loved alcohol, and it loved me.  I've only gotten sick a few times, and a few of those were maybe because of some other things, and a few unfortunate me not know some other thing was in there moments.

Girlfriends are your biggest asset in college.  How many times we all saved each other.  So fast forward to becoming a drug and alcohol therapist.  So that was interesting.  Who knew an addicts daughter becoming a drug and alcohol therapist.  How predictable.  I won't down play my role in that job though, because I saved a lot of people's lives.  There were a lot of lost souls deep into some heavy life threatening things/ and yes alcohol.  Alcoholics who were on their death beds and still needing that bottle.  Helping is what came natural, but even still I drank.  I mean I have seen alcoholics in all shapes, sizes, colors, and tolerances; but never did I think I had any "problems" with alcohol, so I drank.  

Okay fast forward to Steve & I's relationship with alcohol.  If you've watched the documentary you know Steve & I already have an interesting relationship with alcohol (if you haven't plug, do so :)), so of course we loved bar nights.  Sitting at the bar with our many drinks and packs of cigs just talking about everything there is to talk about.  Steve and I were fun.  I mean we are fun now, but it's a tame fun.  We were wild.  I like wild.  I never wanted to loose it.  So we just brought the party here. Everywhere we would go I would bring travel mugs of wine even the hospital), I would drink at least a bottle every night, smoking my last pack of cigarettes for the 3497th time and just unwinding; tipsy and pass out every night.

During these times, I was having fun, lots of people over, fun parties, socializing, etc....but was I being a good person?  I mean I don't think I had started to get it.  I was trying to, reading all the right words about how to be the person I wanted to be.  How to lead with kindness and love and to be mindful of my feelings and behaviors, words, etc.  Those are my ambitions in life, I don't think I was absorbing anything.  My priorities then were to socialize with as many fun people as possible and keep the party and attention going for as long as possible.

Then comes the inevitable crash and burn that leads to the point of the story.  Turns out drinking kind of fed into some not so flattering behaviors in me, that I just never wanted to admit.  I would make excuses for my behaviors, "Oh I'm not being short tempered with Steve because I'm tipsy, it's just really stressful and he caught me at a bad moment."

I would rationalize this in my head, that it was justifiable to snap at a helpless man needing his full time care giving wife to help him with who knows what this time.  It wasn't okay.  I had to see it wasn't okay, and stop making excuses for myself before I could do anything.  You know marriages obviously I'm not the only one who would cut or fight, Steve and I are good fighters.  We are warriors it's just sort of in us.  Learning to tame the beast is the biggest challenge for a warrior.  There is always a time and place for that warrior in life, and snapping at a helpless man for something is NOT the time or place.

So yes, my 6 months without alcohol has given me a new understanding that I only recently admitted to myself and now I'm admitting it out loud.  You might be wondering why?   I wonder how many of us are looking at our dark sides?  How many of us actually look at that not so flattering behavior?  Then how many of us try to figure out why it's happening?  And how many do the work?  

I know I wasn't doing all the work.  I wanted to be something that required work and commitment of me and I was spinning my wheels why nothing was working.  It's because I wasn't actually do any work.  I spent my nights sipping wine stalking free people peeps on insta, because in my mind that was my next challenge.  I was so in-congruent and it was showing up all over the place.

Now could I have gotten to where I am today, feeling my wild side still having a place while taming the beast, without cutting out alcohol?  Sure maybe.  Am I suggesting everyone stop drinking?  Nope. Certainly not.  This is just me admitting that in MY journey it wasn't working, it took me 6 months of not drinking to actually admit it to myself.  Will I ever drink again?  I don't know.  I often day dream of Steve and I sitting in Italy eating endless pasta (Yes even with gluten) and drinking loads of wine, so who knows.  I just know right now, with what I want in our life, and where WE are.  Alcohol just doesn't fit.  

There I said it.  In writing even.  

My least favorite A word.

In practicing meditation I've learned some days my brain is much like a well behaved dog.  It does what I tell her to do, and even a little extra just to make me smile.  Then some days, like today, it's has so many things bouncing around, and into each other; it sends me on a long mind trip I didn't ask to go on.

So I'm sitting on my cushion, in my spot.  Feeling the bits of the sun beam on my face and the chilly morning breeze blow through my hair.  I let out a big exhale as I give in to the sounds of the birds and waterfall, and suddenly it happens.  "What if not doing wound care everyday set you back?"  "What if there's something brewing and that's why he hasn't felt well?"  "What if you made the wrong choice keeping him home?" "What if what if what if what if...."

Shaking my head much I like I see my dogs do when they get wet, I shake the what ifs.  I sigh and try to settle my shoulders back into my practice.  The birds are singing to me and that frog who likes to sing during the morning is there now too, as if to cheer me on; and here it comes again, "You know you can't give Steve the meds he wants today for his, you'll have to take his anxiety from him..."

ah ha.  There it is.  The key to why my brain won't stop.  Anxiety.  My least favorite A word.  My entire life I've had an interesting relationship with that dirty word. I used to have these dizzy spells as a kid, where the world around me would be moving so fast but I was stuck, and I would be forced either sit down or pass out.  They weren't common but of course they led to doctors appointments and all that.  They did find some mineral and vitamin deficiency's and everyone said, "That must be what it is."  Of course it wasn't, but it was so infrequent I would learn to play it off, "I must need food or water I'm dizzy.  Sit and breathe through it and then I was okay..."

For those who don't know I have my masters in clinical psychology.  I've learned the ins and outs on this A word, and I have even successfully helped some clients learn to get a grip on their debilitating anxiety.

One extreme case comes to mind, he was agoraphobic (afraid to leave the house) and it was my job in one summer to help him conquer it.  I was so sure of my counseling skills in these early days, i'll admit, but even my inflated ego was a little unsure if I would ever be able to help this man.  Without too many details he was transgender and newly had undergone some sex change therapy.  My first day with him I'm trying to be like a sponge and take it all in.  His world, his feelings, the way he perceives the world etc.

A few weeks later, I suggest we take an outing.  Because I worked in the field I would see people in their homes and often take them on excursions.  Our first outing i'll never forget for as long as I live.  We get to a coffee shop, and as we walk in, I ask, "Can you place an order for coffee?  I'll buy."  I should add I worked with the very underprivileged and undeserved population at this time.

He walks up to the counter, and starts crying, and hyperventilating.  Suddenly, I see maybe for the first time in my life TRUE debilitating anxiety.  Not just that dizzy feeling you get occasionally or the the butterflies in your stomach for talking in public.  He runs out the door, and I meet him at the car.

"I want to go home."  He says through forced breaths.
"Can you tell me what happened?"  I ask.
"Take me home."

The entire car ride he is struggling to breathe between tears and as we get to his house, and he gets out of the car he vomits and falls to the ground.

It was humbling and I could write about this forever, in fact I may in the book; but this was my first glimpse of that out of control anxiety that I've heard of and studied, but never REALLY saw it.  Sure all of my teenage clients had anxiety, but I would often tell them, that's hormones and growing up you don't need a pill for it.

I never experienced this type of anxiety again, until Steve.  We don't leave our house these days, that's no secret, but the reason why is very similar to the story above.  On several occasions out of the house, we get out of the car and people approach us, suddenly Steve can't breathe, even while on the vent; because he's hyperventilating.  In that moment there is nothing I can do for him, like there was nothing I could do for my patient.  Understanding in that moment all I could do was take him home and tell him, it's okay.  Don't beat yourself up.  Obviously with ALS and the pain and sickness that Steve feels on a daily, I'm not working with him to get him on outings, because he doesn't want to, so neither do I. :)  I just now bring the party to us, and he doesn't have to experience that trauma.

So I went on a long tangent on this A word, and I'm going to leave it, but I want to talk briefly about my relationship with it.  So these dizzy spells will still happen, and much more frequently these days. Now that I fully know what they are I have a trick and it helps me every time.  Of course I don't have the trick to stopping the A word from creeping in but at least I've learned to take control back.  I sit down honestly no matter where I am on the ground and just breathe and as I'm breathing to take back control of my mind, I say, "I am in control of my mind,"  "I am okay," and "thank you"

So today as I focus on my breath all day to keep the A beast away, I will offer some gratitude for my understanding of how to make this life work for me.  I hope that for everyone.  That's what made me want to be a therapist.  In hope we can all learn to find something that works for us to conquer whatever challenge we are facing.  It was also to encourage others that YOU have the answers in you already as to what will help, you just have to find them.

So with lots of breathing today I send y'all love in hopes that you find what works for you for ANYTHING you have going on today and beyond.

xo.

Writing this blog for me, and for lollipops. :)

Here I am holding myself accountable.  Give me a lollipop.  ;) 

So I sit here while our 15 year old Jack Russell lays on my lap/chest sleeping.  I'm thinking I don't know what to blog about today anyways, and Ozzy clearly needs the cuddles he's not feeling well. Maybe, I skip the blog today.  I mean I don't want to just write bland words in sequence without feeling them.  Who will that impact or inspire?

You know who?  Someone pretty important.  ME!

It will impact and inspire me because instead of giving into life's excuses I'm following up with a commitment I made myself.  Did you know I wake up 4 hours before Steve?  4 hours!  Yes half of that time is spent cleaning up the house from whatever activities happened the day before, yoga, mediation, and garden time, but then I have 2 hours to work on things.  To blog, write, study, ready, start working on a project.

I have a really bad habit of doing the "filler" where when I know a nurse/someone is coming at 11, I will do stuff up until 10 and sorta just doddle until 11.  I have a fear of them interrupting my process and me never getting back into it so I stop.  So instead I waste time.  Leading life with fear is as useless as a pen without ink.  

So I'm guessing y'all are wondering why I am writing on this topic AGAIN?  

It's because I still HAVEN'T gotten it. Because life doesn't just stop coming to present me excuses that I can totally choose to use as a way out of something.  Life still requires me to show up EVERYDAY and choose to follow through and do some work.  Just because I said, "Ok world, ths is what I want to do with my time..." doesn't mean magically the universe is responsible for making sure I ACTUALLY DO IT. 

 Nope, it's all on me.  When I have the time (which is a gift) I need to CHOOSE how to use it.  Wisely and mindfully or waste.  

Well, here I am showing up.  Taking the first step.  Following through.  Living congruently.  

Yes yes. Applause accepted, or I'll accept the, "It's about time," as encouragement also. 

Where haven't you been showing up?  If you're reading this and you live a fully congruent and mindful life I would love to hear from you!  Seriously.  I'm sure you are one of the many changing our world in so many ways it's mind blowing.  If you're reading this and you maybe have some work to do.  Join me, will you?  :)

If I'm a tree you're a tree. Or something like that.

When you really become in tune with yourself and your habits and reactions to life, it's interesting what you discover.  In some areas I work best with structure, but I'm also very free; in all ways.  So as I find myself finally in the zone while being focused on what's actually ahead of me in that moment instead of the hundreds of things buzzing around me, I have some structure.  I find me making lists and checking things off.  So much productivity.    

Suddenly, I'll have this constant heavy thought of I'm too free of a personality type to live with this structure, it's stopping my creativity, and I'll let it all go, finding myself floating around aimlessly living in a nice dream world.  Doing things as they come or as I'm inspired, and this works for me for a few weeks, until the smashing reality of things left undone pile up and fall on top of me.

Then I'm left confused as to how I'm supposed to be or live or function.  The only thing that makes sense to me is caring for Steve and the rest is too overwhelming to process.  So then I shut down for a few days and crawl in a bubble to lick my wounds, until I'm finally able to get my head back on straight and then I go right in for structure to start the pattern all over again.  

The pattern flows very closely with the moon. No surprise here. So as I've really put it in my mind to be mindful about what is working for me, and what can I do that will continue to work for me, I've come up with something I will name Hope-tree-ivity.  

In me sharing this, I hope it helps others who don't fit society's molds feel inspired to make their own. Because one size fits all does not fit me, and I'm going to guess it doesn't fit A WHOLE lot more people than you would expect.

Here it is.  It's simple and I don't know why it took me so long to get here.

Have an equal balance of the 2 in a day.  So simple right?!  Why is it one or the other?  Why is it structure OR free.  You say, "oh, Hope you can't be structured and free flowing at once", and I say, "Yes you can."

Think of it like a tree.  

The structure is what roots you in the ground.  It keeps you from floating in the clouds all day, and helps you find routine in areas that NEED it, and the free flow is the leaves, growing in different shapes and colors in all directions.  Aiming towards that light and flowing in any direction the wind takes it.  

I was writing in the book yesterday and I continued to draw lines of connections between me and trees and this thought came to me.  Certain areas of my life I need structured.  Okay hope, so wake up and do your morning practice.  Okay hope, fulfill these obligations that require immediate attention and do your packaging and shipping. Structure.  Then the creative side, sure work on whatever project calls you that day.

With my creations I have a process where I'm fortunate enough that those who support me understand.  My custom orders have a completion time range from 1 week to 1 month.  It's mostly because Steve's my number 1 and if he needs me all day, there is no taking my attention away to work on a custom order.  That's only one side of it though.  When I create I am putting my energy and intentions to bring something good and positive in the world.  I want this mala I'm making you to bring you that feeling you need.  You need peace, okay I'm going to make your mala when I feel peaceful.  You need love, well I certainly won't make it for you after I get done with an argument with Steve.  Same goes with all creations, but I've blogged on this before. 

Why are we trying to put ourselves in a box when we are trees!!  We need more room, more ideas, we grow, we are ever changing.  So a simple acceptance that everyday needs a little structure, but it can also have that free flow that I (and others) love so much.  

So I'm going to root down like the tree and enjoy the sun shining on my face, the breeze blowing me around, and the rain falling down to nourish me. 

Side note: If I was typing this on my phone, it would be inundated with tree emojis. :)