Taking control, of control. ;)

Control.

If you do some research on a size 10 trache (tracheostomy tube), you'll come to find that having a patient who has a size 10 is a very rare occurrence. Steve has a size 10 trache, and if you are new to our story, you may not understand just how many difficulties we've had with his stoma (the site in his neck where the tracheostomy sits).   

So to catch you up, I'll summarize quickly for you; when Steve first got his emergency tracheotomy, he was roughly 100 pounds.  He was quickly on his trip towards the 67 pound days.  Steve's diagnosis of gastroparesis came over a year after symptoms first started.  Much like his ALS diagnosis was 3 years after symptoms first started.  So this trache was a size 6, which is very standard for someone his size.

Well, instantly life as a trache patient brought infection (Pseudomonas and MRSA), and continued weight loss due to gastroparesis, and soon to follow was violent vomiting, constant aspiration and infections, and continued ALS progression.  It became very clear that until Steve was given alternate nutrition to support him (TPN -IV FOOD), he would die.  So Steve's been on TPN for a little over 3 years now.  It's saved his life, and has carried him far longer than any doctor/pharmacist ever hoped for. However, that type of nutrition while it did shoot him from 67 lbs to 150, only goes so far for truly nourishing your body. 

Skin integrity began to be a problem, to shorten our celebrations of the weight gain.  Trache stoma (along with every other stoma site, ie feeding tube) started to stretch.  Significantly so, where Steve jumped trache sizes to a 10.  Now the more a stoma site becomes compromised, the more any movement starts to add to the complication, to any wrong move during trache care or transfers; can be life or death at this point.  

So this started, me taking control over all that I could.  Because so much of what has happened to us has genuinely been out of our control.  Doctors marvel at the set of circumstances Steve has had to overcome.  It's one thing to take on a terminal illness that is relentlessly attacking your body, but then the added complications that collectively tear him down.  

So back to control.  No one is allowed to move Steve without me in the room became a loud and clear rule in the hospital, as I had to be there to assure the trache was okay.  If on the rare and extremely frustrating occasion I am not allowed in the procedure room (I'm calling you out intervention radiology) I put someone I trust on it. In fact the number of people even allowed to touch his trache I can count on one hand.  This need for control is one that I see as an okay time to take control of a situation.  However, it didn't stop there.  I discovered just how much I could control, and just how much better it made me feel about our situation.  That it wasn't long before I found myself trying to CONTROL EVERYTHING.

I mean everything, bless Steve's saintly heart, it's 10 o'clock, and I'm ready for bed.  He's not. Well, that's not very fun for him.  Because I then admittedly go into all the reasons why he shouldn't argue with me over this.  As innocent as this because YES I do deserve to have a large say on bed time because of how important consistent sleep is to me being able to survive the demands of full time caregiving; but this is just one of many ways in which I started to take what was once regaining my power, to then taking everyone else's.

The reason I can share this kind of really honest life with you, is because I've been digging deep into all the places I've gotten off balance, and really searched how I got there.  So I could understand how to regain balance.  Where I stand right now to keep that balance, I've had to pull away from some people I love very much.  Not because I love anyone less, but I can't be that great friend/sister/student/teacher/shoulder/etc, for anyone until I started to get balanced. So, if I can't be there for one on one chat's about my people's problems in their lives; maybe I can share openly about me working through mine here, and hope it helps them or anyone in some small way.  

I was giving so much of me out, in caring for Steve, and others, and the world; I sort of lost myself there.  I thought I had it together with my control trip I was on, that was fooling me into believing I had "everything under control."  Well, I was no where near "under control" and was off balanced in every space of my life.  Of course, I wouldn't be back to blogging again if I didn't feel a little more even, but it's not something that will happen in a month, or even a year. It's something I will work on daily.  While, I may not be able to be a good friend right now; I am a kick ass caregiver and finally giving myself that love.  I'll be back connected to others, before I know it. :) 

To those I've encountered in this process, who has been there through the many different phases of the ever evolving life Steve & I lead; I'm sure some of you are reading this proud of how much clarity I have, some may now understand why I (we) did something, and some may know I now understand why they did.  I'm so deeply grateful for the beautiful people traveling on this journey with us.  No matter which phase of it you've been on, you have played a huge role into helping us still be here living and loving today.  

So thank you, and know that while I may not be as vocal in some areas, It's not because I'm drowning anymore.  It's because I'm doing the work, ladies and gents. 

xo. 

A little mix of mercury retrograde and life speakings.

This blog is brought to you by Mercury in Retrograde. ;) 

I'm not one to ever try to form someone's faith beliefs.  I may spend a lot of time trying to convince you to buy into climate change, or eat less meat, and probably meditate; but one thing I will not do is tell you what you should believe, in spiritual terms.  I'm so thankful for my upbringing and lessons, and also eternally grateful for the opportunity to make sense of all that I've been taught and determine what works for me.  What do I believe truly and feel connected to.  It may not make sense to every(any)one else; and I'm okay with that, because I'm so sure in what I experience, see, and feel.  So when I write about these experiences know this is personal to me.  If it doesn't align with you at all, it's okay.  We are all allowed to see faith and spirituality our own personal way. Please don't ever feel like you have to be lumped into someone's idea of what God or religion should look like. Feel it, really tune in, if you're interested, and if so maybe you'll resonate with this.

Recently I've come to find myself attracting a lot of teachers in my life.  Some have been beautiful experiences and some felt more like those hard lessons that 2016 was full of.  I have an understanding of how much I am responsible for how my life manifests, but also appreciate how much God plays a role with the unknowns the world brings. 

I've learned a very helpful lesson, which is what we can call the purpose of this scattered blog today. :) 

The more you open yourself up to learning about the world, the more people will bring you their beliefs, experiences, knowledge, "stuff."  Some of it is may be meant for us to take from them, some NOT AT ALL meant for us.  The tricky part is both tend to present themselves in the same light.  Until I was able to actually stop picking everyone's stuff up without thought, I had a hard time seeing what was really my own.  Here I was wearing other people's thoughts, feelings, and beliefs walking around not feeling like I was living in my own skin.  Until one day, I laid everyone else's stuff down, and really felt what I was feeling about all around me; I finally felt my grip on my world.  

The ability to differentiate from what's yours and someone else's doesn't come to everyone with an aging process.  It comes with experience, which I have discovered is how much time one spends turned inwards. When is the last time you've stopped to think about who's stuff you're carrying?  Are you living your own life, or is it one someone else handed to you.   If something feels off to you, pay attention to it.  It's feeling off for a reason.

There's a reason certain feelings come to you through the day.  They aren't for you just to shake off, because you don't have time for them.  If you need to shelf it, sure, but the longer you keep it up there, the more it will come knocking you around.  Those feelings, those frustrations, etc; they are all here to show you something.  To show you what isn't serving YOU.  

So today, as some things came falling off the shelf, crashing me down in tears. I was shown another thing, that isn't serving me well.  Because if you are paying attention, life will help guide you on your path.  Even when the trees come falling on your path, if you are tuned in, you'll be able to step around them with out too much trauma.  

I'm listening. 

Care Wife

I was asked a question the other day, that will guide my blog today.  The question was: How do I separate between being wife and caregiver?

I thought on this a little everyday since being asked, by another fellow caregiver; hoping I would conjure up a nice little how to recipe.  However, here's the truth; I don't separate. 

Truth is, one of the reasons I cringe when people tell me I'm selfless or amazing for doing what I do for Steve, is because I don't do any of it because I'm some angel; I do it because I love him.  So being his wife, is why I'm his caregiver; I literally can't separate it.  

I wouldn't be able to power through some of our days taking care of him, if love didn't fuel the journey; and if I tried to separate the two, it wouldn't serve us well.  Obviously, I find this method works for the us the vast majority of times; with of course the always exceptions to the rule.  For example, the caregiver in me craves to have Steve clean, meaning getting rid of his cradle cap and dead skin on his hands; but the wife in me feels how much it hurts Steve, so I am easily convinced not to do so.  

In fact, I have such a hard time with separating things with Steve, that I sometimes no longer can separate what's his emotions vs. mine.  When he's anxious, instantly I'm anxious.  One of the lessons that have recently become very clear to me, in such a way that it's staring at me every time I look in the mirror.  For more time than I want to admit when Steve would feel anxious, I would rush him through the process.  In a very, I am in control here, kind of way.  I would say things like, "Okay babe, come on you have to calm down to tell me how I can help you..." or the humiliating moments of me saying things like, "Oh my God, stop and just get it together."  When really all Steve ever needed/needs is me to sit with him, feel that anxiety with him, and breathe through it together with him.  

Knowing what to do and doing are two different things entirely, however I find it a little easier every anxiety episode to learn to sit with him more.  Because the truth is, being so connected to him, IS why he's still here.  Sure to some who may not fully understand the situation, that may sound dogmatic or ego driven; but it's simply fact.  Steve NEEDS me to survive this, he NEEDS there to be no lines drawn between that's his or mine, or husband/patient.  He needs me to feel his needs in the other room so strongly sometimes I think they are my own, he needs me to blur the line of wife and caregiver that I am his care wife.  

In fact, that's what I should call it now.  Because there is no separation.  I know that may not help others, who desperately seek some separation; but maybe it will.  Maybe, finding the positive in whatever your situation is, is all you need?  I don't know, but I know honestly I couldn't separate the two now even if I wanted to, because when you find what works, My God, you cling to it for dear life.  

The ol' line I used to end my drug and alcohol classes with was, "It works if you work it."  Of course, that situation "IT" working is the steps, but "IT" can be whatever situation you are in. Truly, if you take what you have, and put your heart into it, YOU CAN make IT work. :) 

Happy New Year, part 2.

Hello 2017.   It's genuinely good to see you! :) .  I know a lot of people are full of resolutions; but I went the intention route this year.  Mostly based on how I want to feel.  

What's the difference?  

Resolution: a firm decision to do or not do something.

Intention: a deliberate plan that's full of purpose. 

Resolutions have always felt very "I'll quit smoking after this pack" to me, but an intention I find the devotion I need to follow through.  For 2017, I want more action, more leading with love, more inspired living, more intentional and balanced being.  

I had my personal ceremony (and one with Steve) to write some intentions for the year.  Most I will keep to myself; because 2016 really showed me I give too much of myself out, that I forgot to keep some for me.  Doing so allowed me to see,  how I can INTENTIONALLY be generous with my light.

I have one thing I've really wanted to do for a while, and an idea finally clicked.  I've wanted to give some love and light to other ALS caregivers, and have always come up short with how to do just that.  So here it is.  For every painting I sell I will paint a floral/bouquet/tree painting that will be on a small piece of recycled wood from our backyard for a caregiver. I am going to be taking nominations.  

If you want to nominate someone (yes you CAN nominate yourself), email me : hope.ann.cross@gmail.com.  I will then make a list, and send them out in order, for every painting I sell.  There is no guaranteed turn around time, but when you do write let me know floral/tree.  

Few other intentions I'll share for the year:

1. Continue to learn to use food as medicine for both Steve and myself.  
2. Continue herbalist path.
3. Write it down. (All of the words).
4. Self care.
5. Balance balance balance.

I'm always thankful for an opportunity to pause and reflect on what's working, and maybe not working; and then set intentions to continue forward.  As much as times just a way to keep up with one another, I appreciate the reminder to check and balance.  In short, I want a year of living fully on purpose.  

A little follow up. At 11:15 PM.

Here I am 11:16 PM on a Friday night.  Maybe it's helping warm me up for staying awake tomorrow, but lately the words keep flowing around this time.  Today however, I decided to blog.  Because I am holding myself to balance and that means no blog weekends; however I have a follow up on the last blog.

I like this piggy back type blogging.  Maybe because it's easier, or it feels more like a conversation.  Either way, here's what you can expect for a blog written 45 minutes before midnight.

So I wrote earlier about acceptance, and what a valuable role it plays in my life today, and I got some pretty thought provoking feedback, that really made me want to go a little further in explaining my meaning of acceptance.

Here we go again an ALS example.  Yes we accept that ALS is going to run it's course, and like I mentioned in the last blog, it will keep throwing us over that cliff.  What maybe I should have gone further detail in was this; that doesn't mean we just stay down in the pitt.  We show up every single day putting our work in to be prepared for this war as much as possible.  

Same goes with Trump.  Sure I may not agree with maybe anything about him, I'm still searching; however I have to accept he's in the position he's in, and accept that it's time to warrior up and carry on as peacefully as I can.  

So yes, acceptance is key, but don't think it means you have to hunker down in a corner and cry.  Hell no, you accept this is the reality, and then you show up.  Everyday.  

Happy New Year, part 1.

Somehow despite an inspired nights sleep (having to jump out of bed to write for hours, not a complaint here) and a sunrise wound care session, I feel energized today! So I'll take this energy and write part 1 of my new years blog.  No blog weekends is part of my balance, so you'll get part 1 today, and part 2 Monday. :) 

I know this opinion may not be the most popular, but despite some pretty challenging road blocks put in our way, 2016 was another year of blessings.

"But Hope, all those hospital visits; how can you even say that?  And Trump?"

First of all, Steve is still here.  That alone makes it all a blessing, and I'll get to Trump later. 

Seriously though, there was my PBS dream come true, our documentary DVD (haven't seen it? search HOPE for Steve under amazon or iTunes) , lots of home improvements, some really important great new connections, but the real take away is the hard lessons learned.  

To keep this short, I'll stick to the top 2.

• You can't change the world, much like you can't change others.  You CAN however, change yourself; and maybe others and the world will follow.  I was putting so much energy into "changing the world", and was met with nothing but resistance, until it became very clear to me, that my job is to focus on me.  It is that simple, don't over complicate it. :) 
• Trying to fight something that is happening, doesn't make it go away.  In terms of ALS, you can see that the complications were going to happen, despite all of our efforts for them not to.  At some point we had to learn to accept and learn to be okay with the random pushes off the cliff; just as important as us getting to choose to keep climbing back up.   It would be so easy, just to be defeated, and say, "hell, I'm done trying, it will just keep kicking us down."  Also, equally easy to sit around complaining about how unfair our circumstances are.  However, neither of those serve us well.  Of course we have our moments of "f this..." but thankfully we've learned staying there doesn't serve us well.  What does is putting our energy into learning to adapt to what is happening.  If anything this year did teach is it does get easier with practice. 

Insert Trump.  Yes, some of us would love to have different circumstances, but truth is we don't. So now if you want to be a part of helping make the Trump ride manageable for yourself and others, accept it.  Once you accept it, you'll be surprised at the many creative ways you can actually turn an unfortunate situation into being okay.  Of course if you want to continue to view this situation as unacceptable, that's fine too, but you'll only be hurting yourself.  

Truth is, the year was one that revealed truths that most didn't want to see, and it was one that presented some heavy situations, to either help you get really grounded down, or to spiral out. The outcome, despite what way you look at it, is on you.  So I get it.  Even in situations I feel completely out of control, trying to grab control of people, circumstances, etc isn't the answer. Controlling myself and my reactions is.  

What were your hard lessons learned? Share here.  I would love to start a dialogue.