Stepping off the ping pong table.

Here I sit at my favorite writing nook, with my antique desk and tea cup succulents; typing, and hitting delete on repeat, it's not that uncommon for blog time.  With a constant distraction with seeing a squirrel scurry up a tree or a clump of birds come flying in for feeding. The window I sit at is like having a front seat to a nature show. I sit and try to recall the well written blog I wrote in my mind last night, as I laid curled up in bed perfectly sandwiched between pups; my mind draws a blank.

Tracking the number of species of birds, I've seen thus far, so I can tell Steve when hes up, trying to get down my breakfast I've managed to have for 13 days in a row, and watching the clock to assure I have everything ready for this morning's wound care are occupying my mind more than words.  

Suddenly, my phone pings at me, "Did you take your vitamins?" I click check, going in to the app, to make sure I check breakfast and morning routine off the list.  Yep, I'm working on building healthy habits. 

Finally stopping the ping pong game I'm playing with myself, I am understanding that despite years of people telling me, I can't hold contradictory behaviors, beliefs, feelings, etc. I actually can hold whatever contradictions that serve me that I want.  

It doesn't have to be one or the other, or all or nothing; despite what people tell you.  It just has to be what balance works for you.   I would read an article saying "structure" creates the happiest people and think, "Okay that's it, everything is on a schedule."  Of course, that doesn't work, so then I would go to the other end, "F this, it's all about FREEDOM!!"  Realizing soon enough that didn't work either, I would go back and forth between extremes, always left analyzing why it didn't work again on this side of the table. 

I know I'm not alone in this, because a blog I wrote while right in the middle of the ping pong match, talking about how I was letting go of my extreme need for freedom and I was jumping on the structure side; got a lot of responses.  Lots of, "Girl, you just described my personality to a T." Now that I've stepped off the table, and can take a look I thought 'damn, how many areas in my life a I really playing ping pong with?'  

It's such an easy trap to fall into.  It's set up for us perfectly, so many people sharing things that work for them and their lives, and suddenly we think, "That's what I've been waiting for, I will follow that and find my happy place."  This mostly never ending with the results we want, and why?  It helped this person writing it so much, why not me?

It's simple.  It's not my life they are applying whatever works for them to, it's theirs.  No one is going to know what works for me, other than me.  So why was I out here seeking my truths from all these other people, when I had the answers inside all along?  Lord alone knows the answer to that one; but a large part of what it comes down to is learning to SHUT IT ALL OUT.

For even just a day, shut it out and ask YOURSELF what you need.  Here's how I have come to find if it's time to do a little shutting out.  If I read an article, blog, or listen to a podcast; because even if I'm no longer seeking how to live my life advice I still find myself deeply inspired by others who share their stories, and I can absorb this article, without feeling like I have to take on this person's life as my own; I'm in balance.  Much like my handy app, I can add the check.  

However, if I sit after reading another person's words, and feel, "Ugh I'm useless, I should be living my life like her." Sound the alarm, because something is NOT lining up here.  

This doesn't mean, I'm saying, you can't ask friends or teachers for advice, or you can never get an idea from someone else; of course not because that's an extreme thought (what I'm steering away from here).  It means, sure take whatever anyone gives you, and see if it fits, if not adapt it HOWEVER works for you.  Just don't forget you have the final say on finding what works for you.  You don't have to live other people's lives to have success or happiness; you simply have to live yours. 

Ramblings from within...

I had two mind ramblings come to me this weekend, I wanted to share for this blog. 

First this, "You can't possibly absorb all that's going on around us, it's too much.  To try to hold onto all of it, will kill your power to act on any of it." 

Second this, "Even though most may not know it, everyone has the capacity to be an empath.  If you find yourself having to distract yourself from the world's problems because it overwhelms you, it doesn't make you a bad person.  Feeling powerless by what's going on in our world, and feeling that overwhelm, means you're feeling true empathy. Now the only way to take that overwhelm and turn it into power, is to realize you can only do one thing at a time; and the first of those things must be, getting you grounded and ready."

One of the patterns, I'm currently in the process of untangling myself from it's grips; is to feel like I have to fix everything at once/care about everyone at one/do everything at once.  If you've read any of my blogs since me being back, you know this isn't the first time I've written on this.  There's really only one reason it's a subject I keep coming back to; and it's that it held me back for close to a year.  I literally couldn't put one foot in front of the other, some days.  Of course, most people would never know that, because even if I blog my heart out to everyone, people still perceive me as a warrior.

I want to add this, because it's important, people seeing me that way isn't a negative thing.  People seeing me as a warrior even on days I can't function, helps me get back to that space. I want to acknowledge, that having a group of people holding space for me, and seeing me whole; is everything to me.   

Here's why you may see me step back often, because, what lead to my demise was wanting to solve too much; from standing rock, to the election, to ALS patients and caregivers who needed help, Syria, Aleppo, innocent black lives being taken, the climate, STEVE, Steve, Steve,.... You can see why there wasn't any room for me.  For years, I lived in a life where I was told by anyone I happened to be dating at that time, that putting myself first made me selfish or needy.  

Well, guess what?  I'm married to a truly incredible man, who would never put that kind of shit on me.  He knows if I didn't drop it all, but him and I, and really get me in focus on this picture, we wouldn't be able to do this anymore.

 So if it seems to you on the outside, like maybe I stopped caring.  I promise I didn't, I never will. I just had to start seeing myself first.  It took so much to get here, and I can't say it's a stable force yet, which is why anytime I begin to get extra sensitive on the internet, I HAVE to step away.  If this resonates in any way with you, and you're feeling a little TOO much of it all, maybe it's time to do a little disconnecting.  

Action is needed, but if it's from a place I was in a few months ago, it won't be any kind of action that will truly make an impact.  

Hello distraction, always good to see you...or is it?

Today, as I try to distract myself from the discomfort I feel, about the threat of winter weather in the south; a clear habit that I would like to let go of showed itself.  It's been a minute since I've gotten into one of those facebook discussions, that aren't discussions, more just typing at one another; but here I sat today engaging in it.

There's a wise quote, "Not everything deserves your attention," that I like to use as a mantra on a regular while using social media.  Social media unnerves me, in a way where people see your interactions and maybe read a blog or two, and they assume they know you.  It's also a valuable tool.  Not just in the way that it helps me connect to others and build community, but it also is the gentle nudge when I'm off balance.  IE: Participating in a conversation that to me isn't a positive use of my time.  Today, while it was an innocent exchange, the truth is I should have been using the time elsewhere. 

I really want to cultivate habits that support my goals, and spend my energy on actions that are aligned with purpose, and that requires me being able to call myself out when I am falling into distraction.  

For those interested in the winter weather; Atlanta (we live in the burbs) just doesn't handle winter weather well.  I'm sure most already know this from the several times we've ended up in the news with people stranded, roads unmanageable (not a whole lot of tax dollars being spent on salt and plow trucks), and power outages.  So how does that affect us hermit-ted away in our nice little corner?  We heavily rely on power (ventilator & 02), so the chance of it going out of course stirs a little anxiety in me.

Of course, in Steve's situations of panic attacks, it's important to help him come out of living in that feeling so intensely; but in mine the anxiety is actually there to serve a purpose.  Instead of just finding a distraction or a happy pill, to numb it, it calls for action, to assure we are prepared.  So with that, we have a small generator (2-3 hours depending on wattage use), 6 hours total battery on Steve's vents, a half tank of gas in our car with a converter plug that can charge; along with 5 O2 tanks with roughly 2-2.5 hours in each.  

Now that I'm prepared, and as the weather starts, it's time to show up for myself.  To trust God and the universe to protect us, and trust in myself to be able to problem solve and act if needed.  I will be on social media this weekend to keep everyone in the loop on our winter weather adventure, but once we are in the clear; it is time for my new years break.  Don't worry the blog is back to stay, it's one that is feeling very well aligned. :) 

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. :)