When impermanence is your reality - Where Steve's health is today

So if you follow us on any social media you know we had a recent hospital trip.  It was brought to my attention this trip, that I probably haven't fully explained in one place where Steve is currently health wise, so allow me to attempt to fill in all the blanks here.  

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Steve was diagnosed in August of 2011, after a year of misdiagnosed symptoms.  Upon diagnoses he started falling more frequently, and was loosing a lot of his muscles to atrophy. Late 2012 Steve had a feeding tube placed, as he was starting to choke more, that became infected the same day (insert infections that NEVER left). It was April of 2013 that he went into the hospital for pneumonia where he coded twice, actually died and was resuscitated once, that ended in him getting an emergency tracheotomy.  At the time of surgery Steve was on his decline to below 100 pounds.  We had no idea then what exactly was going on with his stomach, we assumed he was using most of his energy to breathe and that was the main cause of his weight loss.  Steve was not ready for the ventilator more so mentally than physically at that time, so he waited until October of that year to really begin to explore the vent.  He started on bi-pap settings, and quickly reached the point by 2014 where he needed full ventilation.  

During all of this Steve began vomiting most things that he would get in his feeding tube.  We initially thought it was just he couldn't tolerate formula or traditional tube feedings so I began to make his own food.  In early 2014 after a hospital visit where I expressed my concern for Steve's vomiting, then aspirating, developing pneumonia, and being hospitalized pattern we were in.  He was rapidly loosing weight.  Spring of 2014 Steve reached 67 pounds and I couldn't even get water into him, so I took him back to the hospital after only being home one day in between and I said, "We aren't going home without IV food." 

That's a very brief back story but currently Steve sits at 150 pounds (although maybe 30 pounds are the fluids his body holds), and I will speak on where we are currently.  Steve's stoma (Trache site) has stretched he has the biggest size trache (10) and a hole big enough you could stick your pointer finger in it along with his trache (don't worry no one does that).  So many people ask me how that happened?  It was the perfect storm : getting trache, immediately followed by loosing drastic weight, violent vomiting with aspiration happening, followed shortly by gaining significant weight, receiving all of his nutrition via IV (it may have saved his life but it only goes so far for skin integrity), and the use of peroxide (I should write a post on this alone before we knew better we were told peroxide was good for trache care, peroxide is terrible for your skin especially broken down skin-please never use it); so all combined led to a very stretched site internally and externally.  

2 years ago Steve developed anemia of chronic disease, again TPN (IV food) while it sustains him, it only goes so far. A year and a half ago Steve developed his first pressure sore on his left sit bone after being on the gurney in the ER for 6 hours.  It was set back exactly a year ago while going to a procedure and it became a stage 4 (all the way to the bone).  As of this hospital visit his wound is OFFICIALLY HEALED! Yes we are celebrating but also very well aware that the way a 4 heals means that tissue is very fragile and a recurrence is almost expected.  Regardless though, he has proven he can heal!

Also a year ago Steve's right lung began collapsing one lobe at a time.  It's suspected this happened because of constant pneumonia and turning off his wound.  So there we were with a stage four wound on his left butt, and a fully collapsed lung on the right side.  Normally you would want to be turned off of either of these, but that was no longer an option.  Steve has championed through these.  His trache stoma isn't the only "hole" in his body that has stretched because of extended length of use and the way his skin integrity is compromised. His feeding tube site and catheter site are both using the largest sizes and still leak.  

A year ago I began to finally get Steve's stomach to tolerate little bits of food (he has a G/J tube so I skip the GI and go straight for the Jejunum).  Since then, the times he can tolerate foods his infections do better, he doesn't need blood transfusions, and over all he has more energy.  I wouldn't be surprised if it also played a role in his wound healing (also our IV team increased vitamin C to help as well).  This week since being home is the first his stomach has tolerated foods since getting his gallbladder removed end of August, and for that I'm grateful.  Despite only getting roughly 80 CCs in him a day (broken up in 4 doses) that little bit at least builds his hemoglobin and helps him have energy to participate in his day.

Needless to say we are complicated so when we go into the hospital these days it is truly us just following theories.  We believe this last visit was mostly him needing a little antibiotics and extra TLC to fully recover from that gallbladder being removed.  I was worried he was reacting to his TPN, because he would have episodes at night only, where he became very anxious with tachycardia.  Which comes first the chicken or the egg here, is it anxiety or the heart.  Still unknown, truly, but this visit all of our theories were proven wrong, and somehow he just adjusted.  If you know anything about human anatomy, then you understand that Steve's heart is vulnerable (for more reasons aside from living with complications of advanced ALS) because of the way his lung has collapsed.  Your lungs protect your heart, and slight tachycardia is his new norm, so when it goes up we are talking the 150's.  

Of course there are hundreds of reasons for increased heart rate and Steve obviously has a lot that could be the cause, but for now we are thankful his body sorted out whatever it was.  Sometimes we have to admit we don't understand what's going on in Steve's body; which isn't an easy thing to do for doctors or me, but we have to.  So that's where we are.  The impermanence while there for everyone, that's already increased from a diagnoses like ALS, is really really real in your face these days (our face).

So if you're reading this and you maybe haven't spent a lot of time with Steve over the past few years because life just keeps you busy.  We understand, we have no hard feelings, but allow this to be a friendly reminder to come now.  His well-being requires naps but right now it also requires interaction with people aside from just his wife, immediate family, and our aide; so please come. He obviously can't tolerate a party full of people, so when you message me don't be surprised if I throw out dates where he doesn't have any visitors, rather than taking the last minute "can I come today". :) 

 

Through shadows and in the light.

Today is Steve's and my 6 year wedding anniversary.  Wow! 6 years.  When we got married it was very unknown if we would even get 6 years.  ALS and the stress it brings definitely tried to stop us from making it through these 6 years.  

Photo: Raymond Adams 

Photo: Raymond Adams 

The past 6 years I've been through more with this man, than I've been through in all my life combined.   Even though some days I feel the weight of it a little extra, I'm thankful for it, as I wouldn't be who I am today without this journey.  

The further along this journey Steve and I go, the more I see how our union was to not only help share stories of love and overcoming challenges with the world, but also to help make us as individuals meet our highest potential.  

Prior to us meeting Steve and I were not exactly on a path towards progress.  Following that pull towards each other, trusting it after such a short time and deciding to face difficult circumstances together catapulted us into possibilities we never saw possible for ourselves. 

Suddenly we were being shown our capabilities and opening up to pieces of ourselves we were closed off to.  Lots of growth doesn't come without fights and challenges that you need to overcome.  The trauma you choose to endure going face to face with ALS only makes you a better person going through it.  If you know someone in an ALS journey I know you'll agree.

Often times we know (both being intuitive) that people question our choices.  They question our love and our life, and sometimes it makes us question it.  At the end of the day when it's just Steve and I, we know that our love is beyond just the heart opening growth we get to experience it's about so much more.  We together serve a purpose that's so profoundly needed in this world, and remembering that gives us the fuel we need to keep overcoming these challenges. 

The beautiful gift this life has brought is the understanding of how in our lives we are all each others mirrors.  Showing us where we need growth, where we shine, where the shadow lies, and the light hits.  Steve and I mirror our strengths to one another, we mirror the ways in which we are capable of doing anything we set our minds to.  We also mirror our mean streaks, our love for calling people names, our addictions, need for control, and our need for attention.  

photo: Raymond Adams 

photo: Raymond Adams 

These shadows aren't there to break us apart, although it's really f'ing hard not to let them sometimes.  For Steve and I , what I consider the most fortunate with our love and life is that no matter how difficult and dark we've gotten our strength has always persevered.  Just like we come out of these hospital visits a little stronger so does our love through facing ourselves in each other.  The selves we want to run far away from. 

It's a blessing to be able to grow with someone and to be able to watch yourself AND your partner break through old patterns that were leaving us in the shadows and walk into the light together.  Our marriage on the outside is an inspiration because we choose to keep battling this journey for our love.  On the inside here it inspires me because we have fully faced ourselves, faced one another, and have remained in love.  That is what I love about us.  If I could add anything to our vows I would add, that I promise to stay with you through the shadows and in the light. 

photo: Raymond Adams

photo: Raymond Adams

Self encouragement wins today. <3

I just finished packing before sitting down to write this blog.  Oh, where you going Hope, somewhere fun? 

Nothing fun, but some place essential.  A place I'm super thankful for. Today we are taking Steve to the hospital.  I have a few things to finish up before we go so this will be a short blog.  This will be a blog where I offer myself some encouragement today. 

I would like to say that you're handling this well, Hope, and I'm proud of you.  I do NOT normally handle hospital visits well.  Lots of crying, a bit of screaming, and loads of complaining.  To Steve of all people.  Like he wants to be going there any more than I do.  It's something that I always feel super shitty about upon returning home from every hospital visits.

Processing anything prior to a hospital visit isn't happening while at the hospital.  What is happening a lot of tuning in to Steve to help guide the doctors, a lot of comforting and wiping tears from Steve's eyes, a lot of advocating, and the growth is the most I've experienced in my lifetime.  Hospital visits are holding onto what brings comfort and surviving, for both of us.  

So prior to going in this trip, I would like to take the 15 minutes it's taking me to write this blog to send myself a little self love.  Because WE ALL NEED to be doing that.  In these days more than ever.  So take my cue.  Take 15 minutes today and give yourself a little pat on the back for what you are doing well with in life right now.  YOU DESERVE IT. 

 

A refocus.

You can either spend your energy focusing on what not to do OR you can focus on what to do. 

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Turns out this blog hiatus I've been on taught me something different than I was anticipating. Instead of finding a list of things I should be letting go of, like I have been doing for years, instead I found a shift of perspective. I've learned that instead of spending my time focusing on what I need to let go of, I am better served by focusing on what I CAN DO in my life.  

No more trying to break some habit that isn't working in my life, instead I'm focusing on having more of what is working. Because when you're focusing on what it is that inspires you, what you want to create/do in life, and you're really putting your focus there, you no longer need to focus on what not to do. Because you're where you need to be; In that moment. What doesn't serve you goes away naturally, little by little. 

 As I'm putting my energy into what is flowing nicely in my life, to my surprise I found habits I've been spending years trying to rid, just naturally going away.  All this time I've been doing the work to let it go, tracking my habit, noticing my triggers, doing the steps to stop it, forgiving myself when I fall back into the habit, getting up, starting again.... 

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Turns out all I really needed was a refocus. A shift to focusing back on what I CAN DO, what I want to do, what I'm pulled to do. Focusing on doing rather than not doing, seems so common sense, yet I've spent years waiting to let go of some stupid habit to be ready to start doing what is I should be doing. Writing. I've been waiting until I felt ready. I've been waiting to feel READY to do. 

"I'm not inspired," "I'm not in the flow," "I don't have words," all reasons why I wouldn't blog, I wouldn't work on my book, and eventually because I was finding it acceptable to not show up there, I would stop showing up in my journal as well.  I adopted morning pages after reading, The Artist Way, by Julia Cameron 4 years ago.  It changed my life, and brought me back to myself in a child like way. Journals saved my life as a kid, and again as an adult. Eventually I became so focused on what wasn't working I forgot to focus on what did.  WRITING. 

So here I am, after a refocus, and coming to you honestly. My days are still uncertain, because Steve's days are really never the same; but I've realized something, much like my focus on what isn't working has been a crutch for so long, so has my "unpredictable days".  I would think, well there's no way I can ever fully commit to these goals I have, because I just don't know what Steve will need from me or if I will have the space. Turns out it's all been a bunch of BS excuses. 

Do I need to allow myself to have "off" days? 100%, we all do really; but where's the line that doesn't let you excuse everyday as an off day? I had no line. I had no limits to my excuse because I wasn't "ready" to be doing anyways, because I was still trying to learn how to not do...

The other morning Steve was convinced he needed to go to the hospital. He then had a rough bowel movement, that is complicated due to his gallbladder being removed. The first 5 hours of my day I was in the room with him. It's where I needed to be, my focus was on what can I do to help ease his pain, and help him get comfortable. Once he was finally through the rough part, I was able to leave, exhausted, I told myself, okay nothing on the to-do list is getting done and immediately went to my cushion.  After some meditating and some prayers, I pulled out the trusty journal. I did my pages, even thought they couldn't happen in the morning. I sat and wrote all the feelings I was having, and spilled all the words clogging my mind onto 8 pages of paper. After I immediately stood up, and completed some stuff on my to-do list, did laundry, cooked lunch, and sat down and worked on the book.  

Something happens when I allow myself the space to focus on what I AM doing in that moment instead of finding myself weighed down by a list of things I need to not be doing, or holding on to 5 hours of unprocessed feelings, I worked through them, and I had energy. Not the I just drank a cup of coffee energy, but sustainable flow energy. 

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Recognizing this need to shift my focus has been a welcomed gift to my life, which helped me begin to see where I DO HAVE THE SPACE to do. Not only do I have the space, but this focusing on what I'm doing, it fills me up with more (space, love, energy,...).

So I leave you with some questions.  Where are you focusing?  Do you need a refocus?  What are you using as your excuses?  Leave me some comments, I would love to engage more with everyone reading my blogs.  What the world needs more of these days is certainly community.  

<3 

 

 

STOP AVOIDING

If you know me well enough, you know my constant pursuit of knowledge runs deep.  So it's of no surprise then that I am in two courses one my herbal immersion program (which is two years), and recently I began an intuitive plant medicine course which runs through spring and summer.  

Both are equally blowing my mind, but an exercise I was assigned for the intuitive course yesterday, provided me with some insight into myself, that was always on the surface for me to just recognize, but I never wanted to acknowledge it. 

With it being ALS awareness month as I spoke on yesterday, and I'm used to sharing my ups and downs with Steve, I want to share this one.  The rest I think I'll keep to my journal, the plants, stones, trees, and me. :)

So I have moments with Steve, where he could say, "you're beautiful," and I want to bite his head off.  This is beyond just a wife being annoyed at her husband, or a caregiver annoyed at her patient (I don't like that word but it's what fits here).  It's much deeper and hidden, because I of course avoided looking the issue in the eye.  I hid it with all sorts of excuses and hurt feelings.

Truth is, I feel stress every single minute of every single day about Steve.  When I sleep I will sometimes jump out of bed in a panic to see if Steve's okay; tossing and turning through the night with lots of visions of wounds, and UTI discharge, and unpleasantries.   (I really feel like that should be a word).

Every herbal remedy I learn about, I contemplate if I can use it on Steve, every plant I talk to, I ask it to help guide me with Steve.  It's like my life is completely run by Steve and ALS. Without wanting to recognize that I have been filled the the brim with anxiety, it comes out in little spurts of, "Stop interrupting me's."  This isn't the first time I've written on understanding my behaviors with Steve, nor will it probably be the last.  I am well aware that life is a constant teaching (if you're paying attention).  

Here I am trying to do things to feed my soul, so I can be a better person, caregiver, wife; and instead of it feeding my soul, it's feeding my obsession.  I'm a woman obsessed with finding things to help.  Obsession isn't new to me.  It's something that happens, I find something I like and I'm obsessed until I get what I need out of it, or it takes over me, and I have to let it go.

Well, I'm here laying under a pile of obsessive thoughts, clearing away some of the rubble to reach the light.  Of course, I don't want to dismiss all that this journey has brought me, and the deep connection to the earth and flowers I'm growing.  It's not that I'm not being enriched in any way, it's that there is a big bug eating away at my beautiful green leafs, and instead of stopping, the bugs reproducing and taking out the whole crop. 

So what do I do about it?  One is to acknowledge it.  I'm anxious, I'm obsessed, I'm stressed out, and it's all my mind.  It's constantly going and even while I meditate it's still spewing it's baby bug eggs.  

This is where I am, and maybe I need a fire ceremony, or a group of my girlfriends to come and dump bottles of wine down my throat?  I don't truthfully have the answer, because I haven't wanted to admit it.  I just want to avoid it like I have been everything.  I avoid people, bills, responsibilities, voicemail, messages, mailing products, admitting where I'm spiraling.  So maybe all I do for now is sit with it.  Stop avoiding.

Sometimes I don't know why I feel so pulled to share my weaknesses on a public forum. Seriously, today after I wrote all about these thoughts, I couldn't shake the feeling.  I literally said out loud, to all that's listening, "Not this, really?"  I went about and got things ready for wound care, and the computer was pulling me in like a magnet.  So here I am.  Maybe it's the fairies guiding me to help someone they see needing the words, or it's God reminding me that I can't hide from anyone including myself.  Either way, here's some awareness on life with ALS for you.