Tuesday, June 28, 2016


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.  

Monday, June 20, 2016

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. 

Sunday, June 19, 2016

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 

Saturday, June 18, 2016

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.  

Friday, June 17, 2016

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.  

Thursday, June 16, 2016

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.

Wednesday, June 15, 2016

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.