My biggest teacher is a Rat. A literal rat.

Most people want to proclaim their spirit animals as something cool, like a hawk. Which if you follow me closely you know, the hawk is one of my guides, but we can’t forget the less cool Rat (and mouse).

I was born in the year of the rat, and have lived among rats and mice most of my life. Honestly more people do than they will admit. When the animals around me do something strange that make me pay attention to them, I usually refer to my favorite book, “Animal Speaks” by Ted Andrews. Just reading a few words about why an animal went out of it’s way to communicate with me, helps remind me that I’m not wandering lost in the world, I’m in fact being guided. (1).jpg

Rats are around to make me pay attention to how I deal with the “pests” in my life, which has plenty of room for improvement. It also may correlate with the many houses and apartments I’ve lived in surrounded by trees. I’m grateful for all the roofs that have sheltered me, even if they’ve included rats. Because they are teaching me, so much. So yeah, my little secret is out. While I’m confessing let me say one big one, I sometimes make Steve feel like a pest. Yes, gasp, and go on into judgement….or…

Why do we keep secrets? Mostly it’s for fear of how someone will react. For me I’m already very judged as a caregiver. Messages like, “Your husband is so sick, it must be your fault, you’re caring for him.” In fact I have had handfuls of nurses and doctors say these words to me, “If this gets infected, it’s on you.” How could I not feel some sense of ridiculous responsibility for Steve’s infections? I mean what bullshit to put on a caregiver. Let’s talk infection reality with Steve for a minute.

Steve was born premature and with a slew of health problems, he was an athlete who injured himself frequently requiring surgeries, and has lived with frequent infections even before ALS. Then you add the permanent pieces (trach, folley catheter, feeding tube) all a constant source for infections. Further more you add his anemia of chronic disease, and gastroparesis leading him to being only fed via IV food; which keeps him alive but only goes so far in terms of sustaining him.

Here I am explaining myself again. Instead of attaching some bullshit that I shouldn’t be doing that, i’ll just acknowledge that yes, I’m justifying myself. Because here’s what I’ve come to learn in my 34 years. We have to stop the judgment. I mean towards others of course, but recently I learned it’s towards ourselves that’s most important. My latest mantra has been, “Be so busy learning not to judge yourself, that you don’t have time to judge others.”

It’s interesting to put your life out there. Some people only see the inspired writings and pretty pictures and have put me on a pedestal, which I don’t belong there. Side note: No one does. I just like to remind those that there are days in which I can’t put one foot in front of the other, and the only thing I can muster to do is take care of Steve. So often I feel lost, and maybe it’s because I’m lost in Steve and caring for him. However, I realized recently I’m done trying to live my life in a way dictated by what will keep me from being judged by others. Instead I want to see where I’m judging others, which is a very large clue into where I’m judging myself. It should go without saying, but let me say it, STEVE IS NOT A PEST. Not one bit, and me treating him like one is not acceptable, but also let me add, people judging me on the internet isn’t the pest either. It’s me.

I can’t understand why we are conditioned to strive for perfection instead of being taught to be human. Being self aware in any way requires a certain level of acceptance and heaps of self love. Accepting yourself does not mean you excuse any bad behavior. That’s a dangerous lie we are told in the world of lies we are submerged in. Accepting yourself means you forgive yourself. It means not spending any of your energy self loathing when you make a mistake, and instead use the energy to grow and learn from it. Failures are nothing but teachable moments. Stepping stones on the path.

So as I found myself setting traps and catching the mice and rats, and crying my way through disposing of the animals, I was missing the ways I was trapping myself.

As I would loose my shit, screaming, “I’m sorry,” as I would smash the animal with a brick to kill it, because the trap didn’t, I was missing the lesson.

As I would sob for acceptable (to me) amounts of time to Steve about how my life isn’t worth more than rats, I would hear him say, “Mine is.” Which of course would help me cowgirl up, handle business, pour some literal bleach on it, and move on. I was missing how little I was valuing myself.

However, I was too in my “victim” of these rats not leaving us alone and our house having all of the problems an old house in the woods does, to fully see how much I was being taught. Boundaries aren’t to be shamed. Killing an animal who has taken residence in my house doesn’t make me awful (again I’m typing these words for me). Healthy boundaries aren’t just saying no when you don’t want to do something, it’s also not allowing anything potentially toxic in your space.

For the record the animals have nothing to do with Steve’s infections, and they have only come INSIDE the house when we are in the hospital because I leave our back door open for the dogs. They spend time in our attic, garage, and my shed; and I will forever be killing these poor animals who live among so many people, just trying to hide away from their predators and have a dry place to keep their 4 litters of babies a year. Seriously nature makes lots of rats and mice because they are major prey. Important to say, No I will not use rat poisoning, and risk poisoning my dogs who have caught the mice, the hawks who hunt them, the owls and eagles that make appearances, the neighborhood cats, and snakes. Yep, you’re damn right I’ve called in all the prey, and they show up for me non stop. THANK YOU animal friends. Also, our house has never been so clean. I clean non stop because of them. They taught me cleanliness in an act of self defense. I will catch them as they come, and carry on with this cycle, as we live in an old house in the woods. Because it’s what is best for me and Steve, and I no longer accept anyone’s shame about it, mostly my own.

There’s something liberating in facing your truths. It’s an act of taking your power back.

So I wanted to share my “dirty little secrets”, mainly because sharing my story heals me. Somehow even in all my mess, I am told often that it helps heal others too. It’s a reminder that nothing we go through is to hurt us, it’s to create us into a better version of ourselves than we were the day before, if we let it. If we are paying attention.

PS don’t send your animal professionals here, we’ve paid too much to too many people, it’s clear I have to handle this one on my own.

Permanence in impermanence, a word jumble by Hope.


There are so many words jumbled in my head right now that I want to put down on paper.  I want to write about entitlement, and how following that feeling of being entitled to your own opinion, expression, action etc, despite how it affects others is one of the problems I see in today's age.  I want to write about how record breaking temperatures, floods, sink holes, fires, and climate extremes are our normal, and still people choose denial and continue to heavily contribute to the problem getting worse.

I want to write about guilt and how people use it instead of accountability and growth.  I want to write a response to all of those who say people are too sensitive these days, and point out it's in fact the opposite, people aren't being sensitive enough. I want to write about what really matters vs what's a distraction. I want to write about the thousands of feelings I am experiencing so I can be able to articulate them and then run far the fuck away from them.

I want to write about the fact that I cry and laugh each day, it's no longer one or the other, it's very much both.  In fact currently, it's everything at once.  I want to write about the magic mother earth is giving me despite her also totally revolting, and how it's all symbolic to the beauty and tragedy that coexist at once.  I want to write about the importance of acknowledging duality, and how there's literally 500 contradictory ideologies of how to see life.  Is it that things just are, or do both sides exist, or does it have to be one or the other?  Who decides this? 

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You see my mind if overflowing with words, ideas, ideals, processes, and too much information.  It's not just what is happening currently in our lives, with Steve being told his antibiotic resistant infection not only will not go away, but will just get worse; that's rendering me unable to write or speak many complete thoughts.  It's not just summer heat making my brain feel like it's melting in this swelter, or the information being fed to me on screen after screen.  

So what is it?

It's OVERWHELM. Too much information, too many opinions, too much noise, too much to do, too many ideas, too many people to please/respond to/help/update/change..... too many problems to overcome, too many complications, too many things to figure out, too many images to maintain, too many words to untangle Too. Fucking. Much. 

So why write anything, I suppose you're wondering?  I wondered the same thing, but I just needed the very act of typing words on a screen.  Something to break through the blank white box staring at me.  Something to acknowledge where I am and where I want to be.  Accept what is, while doing the work to get to the other side.  Sometimes I have these needs that lead me to do things that don't always make sense to the outside world, or even myself.

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Like last year, I had to have a tattoo.  It wasn't so much a want, even as strange as it sounds, it was like needing a dose of medicine to overcome an illness.  My cousin's wife had drawn this bad ass peace sign, that I messaged her saying, I wanted that on my body permanently somewhere.  She graciously gave me permission, and the minute I had someone to stay with Steve I booked an appointment with the closest tattoo artist I could find.  I showed him the drawing and when he came back with his sketch I didn't even compare the two (a very rookie mistake to make for a not so rookie).  Sitting in the chair I was levitating as he was tattooing me. It wasn't until I got home and compared the photo and the tattoo that I realized how drastically different the two were. I then had an existential crisis about the whole thing, and cried for three days about it.  Because yes while I realized in the world we live in a tattoo that didn't turn out how you wanted IS NOT a serious problem at all; It is however how I felt, so while understanding this was not a crisis I allowed myself to cry.

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Instantly I was given the medicine I needed and it's taken me this whole year to learn to love the tattoo for what is is.  Which is what this blog is for me today.  That tattoo was the permanence these words are currently offering me.  The time I got the tattoo last year was around the time Steve began to seriously teeter with "am I done with this shit (ALS) or not". Well, currently we are looking the, not by choice, impermanence directly in the face, so that's why I want to write any words down that can permanently mark this moment in time for me. 


I have also been wanting to find a way to share these beautiful photos my friend Jeremy took for me, for no reason other than I asked him to.  My small time playing model helped me realize that it wasn't the act of playing pretty that led me to loving being in front of the camera, but it was the act of capturing permanently a moment of creative expression.  To perhaps remind me in moments of feeling uninspired, that there was this time I was so inspired that it is held beautifully in a permanent form like a photo. 






Growth Doesn't Happen in our Comfort Zones. Accepting Help.

Hello for the first time in 2018.  In the last blog, I tried to be all cute, and claim I could speak what this years words were going to be.  I had the best intentions on those being my words for the year, but the year chose different words for me.  Words like: humble, stretch, grow, release, are what's coming to mind. 


If you follow us through any other realm than just our blog, then you know we had a recent hospital visit that almost took Steve from us again.  Being septic, getting strong antibiotics, ALS and it's neurological challenges, and strong pain and anxiety medication rendered him unresponsive.  He was overdosed and withdrawing at once.  It was one of those moments where we didn't know what Steve would come back, if any, from this experience.

We are so blessed to have not just Steve back, but a significantly less medicated and therefore more alert Steve.  Our blessings far outweigh our struggles, but I can't keep running from the struggles.  This year has presented us with a financial struggle that's new to us.  Without giving too many details (because I really shouldn't/can't) we can no longer sell Steve's paintings.  Being on disability and making an income like we did cannot coexist, and well now we have to be really humble and ask for help.

Asking for help isn't the only way life's humbling me right now.  A recent hiccup with our home health, where they almost kicked us out of their service (because they can for any reason they want to), also has left me humble.  I tried to control a situation that isn't mine to control, and it definitely backed me into a corner.

A place I don't feel comfortable being in, but as they say growth doesn't happen in our comfort zones.  Maybe it's because I grew 5 inches in a summers time growing up, that I remember actual growing pains; but it's happening on a much more spiritual level these days.  I don't like relying on others, I don't like being out of control, and currently that's where we are residing.  

So 2018, much like the past 7 years have (shout out to our 7 year meet-aversary), definitely brought up all shadows I've avoided for most of my life.  This reality is truly having me meet all sides of myself, and learn to love her.  It hasn't always been easy, and a lot of times it's left me only being able to take care of Steve, myself, and my immediate responsibilities (dogs, house, bills,); and leave the rest behind.  


In a sense it's a release, and not one I was always willing to accept. Letting go of the need to control it all, helps me regain the control of what I do have.  Trying to control EVERYTHING around me was literally making me mad. It's one of those things, where I would look back and think, would I come back from this? I felt so ragging mad I thought I was there for life. Until this past Monday, as I'm sobbing on the phone with our home health, begging them not to kick us out. I'm shouting out between tears,  "I'm sorry I complained, I'm so grateful for what you all offer me, and I can't do this alone."

I couldn't figure out what about the conversation shook me so much, I couldn't stop thinking about it. It wasn't that I wanted to complain about it because I literally have to accept the situation as is, and that's a reoccurring theme this year. I'm coming to understand that the reason this conversation has stuck with me, shook me, and literally left me changed, is because I finally said the words out loud. 

"I can't do this alone. "

I've been trying to for so long.  Don't get me wrong, I have my in laws who I call on when I have nobody to help me turn Steve, or to help me deal with our animal roomates.  I am a big bummer in the girl chats sometimes because I just need to let it all out, and I come to you all when we need support. So I am opened up to it, but not as much as I need to be. 

We need more help than I've been willing to ask for.  I know we are in this situation not just to be humbled and learn to ask for help, but to also slow down.  We can't hustle and make that money, literally is also a message that I need to stop the hustle of it all. Hustling through routines, through miserable times, through Steve needing me, through one project just to get to the next, through the lists, etc. 

My sister in law started a gofundme for us, which I haven't shared yet, because I couldn't bring myself to do it.  Because I hadn't been fully knocked down to the root of it, until now.  So if you have it to spare you can either donate there, if paypal is more your thing that works too, I'm on venmo (Hope Dezember) I know that's what all the cool kids are doing these days.  If you don't want to give money, but want to give a supply or pay a bill we are always open to that. My pharmacy would forever be grateful to anyone paying them.  

We do have some things we are working on. Our ALS chapter does do a 750 grant which they did approve me of.  The problem is you have to pay the $750 first and then you get refunded, and I haven't had the money to pay 750 to anything.  We also want to offer you all some gifts for donations (t-shirts and other things in the works), but again we need money to cover the up front costs.

So that's where we are.  Not the easiest blog for me to write, which is why I've avoided it for so long, but here I am.  Thank you all for supporting us through this journey continuously.  I am forever in awe of each of you one our side.  


2017 in review

I have been struggling with writing my 2017 blog, and it's not because I don't have plenty to say about the year, but because I still feel like I'm processing it all.  Each beginning and end of year I come up with a word, or words, (because indecisive is definitely one of my words) for that year.  The beginning of 2017 I chose the words balance and purpose; half way through the year I added duality, because it was necessary.  To end the year I would say the word is unveiling, maybe I would even go as far to say, awakening.  

In a lot of ways 2017 was a direct reflection of the ways in which I am not living congruent with my beliefs.  Watching so much of the world be divided against one another, I had to really look at it as a mirror.  What ways am I being played?  What ways am I blindly consuming all that is handed to me?  Who am I finding myself divided against? 

I remember the first time a class project was to debate another student.  I so deeply recall thinking, "Why the hell are we being taught to throw our opinions around until we either offend the person or convince them to see our point of view? 9 times out of 10, that approach only leads to resentment.  Why aren't we being taught to find common ground, to even attempt to listen to others and see what we can learn?  Instead we are to listen just to respond why they are wrong."

Well, this same feeling I had about debate in middle school, is very similar to how I feel about it in 2017.  Boy, did this year hold more debate than I remember ever seeing in the past.  

Just as I believe in our education systems we are taught things, that truly don't serve us, it's still happening as adults.  We are literally being taught this is our only way, we must debate and be right.  Our truth is THE truth. It's not just that programming I've been really made aware of, but we're also programmed to consume, look out for just us, and the outside world is to be feared. Fear, fear, fear.  You fear God,  fear Santa, fear the republicans, or the liberals, or refugees, or anyone who worships a different God than you, or fear fear fear, all misguided. All being used to distract us from actually coming together and growing stronger. 

2017 to me and a lot more people than you'll hear about on any news channel is an awakening.  I guess really our ability to see if it's awakening vs the end of the world vs the world being made "great again" depends on how we perceive the world.  Each time my heart was hurt because of something I saw in the world, I started being shown in serious reflection, ways in which I have been part of the problem.  It's unnerving, and I supposed that's why so many people turn away from that, and just take the easy approach and say ugh, the problem is with everyone else.  Everyone sucks.  Trust me up until half way through the year I was screaming the same thing.  Everyone made me angry.

So angry in fact that I literally went mad this summer.  The extent of my madness can be summed up in a quick story. I got a ring at the door one day this summer, and it was one of my neighbors.  He handed me a bottle of wine and said, "We felt you could use this wine, it seems you're having a rough time, we heard you yelling, 'I Can't F***ng do this anymore.'' "Oh," I say, "You heard that?"" Yes," he replies matter of fact because of course he did I was screaming it bloody murder into the direction of Steve, God, the trees, my flowers, the dogs.  I mean I owe everyone a thank you for not getting my mad ass sent away.  I literally was a blaze and was burning everyone down with me. 

However that fire I started and let burn for longer than I could control was purposeful.  It was painful as hell, but fire transforms in beautiful ways, after some healing. Fall was the healing I needed to start to feel the regeneration.  Not facing my emotions, just isn't a possibility for me anymore.  If I let things go, it festers and becomes a wound! 

Speaking of wounds Steve's wound this year was all over the map. We started the year with a set back and the wound going to the worst it was, fast forward to summer, to it being healed,  to broken open, to healed, to broken open again.  Because that's how wounds are.  Even when they're healed, it leaves you fragile.  Fragile, and needing to be tended to with the same grace and care a real wound does. I hope you are all seeing how this is also an analogy and it applies to life and real life wounds. :) Just in case you're missing it just wanted to spell that one out.

 When Steve's wound healed, he was able to get up and paint again. (3 times this year)

When Steve's wound healed, he was able to get up and paint again. (3 times this year)


So my words:

In search of my purpose, I had a conversation with an amazing intuitive Rebecca, and she said something that really helped me ease into my actual being.  She said, "Your life is your purpose, you're never not in your purpose.  Every moment has been shaping you into who you are, and that is your purpose."  Those words which after hearing, felt very common sense, really shifted things for me.  I feel like I was spending a lot of times, chasing a purpose, because Steve was so sick so many times.  I was self preserving because I knew if I had some other "purpose" that was just mine, it would carry me through whatever was going to happen.  Well, fortunately I released that kind of crazy pressure, and felt myself settle into me more after the "fire." Even more fortunately Steve is here and stable!  Proving again that doctors words on Steve's fate mean nothing as long as he's in.  Thankful for all of this! :)  This understanding that my life is my purpose really helped me learn how sharing my story is a huge part of that. 

Balance. Well I like to describe this ever changing definition with a visual. Imagine what it takes to get to a point where you and a friend are being held up on teeter totters. Perfectly balanced and not one falling down to the ground. That kind of balance is a few steps forward, and a few steps back.  That visualization helped me see balance as a practice.  You get out of balance, and you come back to it, you do what it takes to stay there, and when you fall again, you stand up and try over. 

Duality.  The dark is as important as the light.  Finally coming to peace with some dark things this year, led to me actually making progress with my book.  I had been loosely working on this book for years, without a lot of direction, but finally facing the dark, led to me feeling okay to write about it.  After some direction from a coach Steve gifted me with for my birthday, I have been making progress on the book.  I don't want to write about it here too much, because I want my energy spent more on making small actions on it daily, instead of talking it up yet.  Putting my thoughts into tangible, readable paragraphs, has helped me in a lot of ways to really process some things that were holding me back. 

 Garden in late spring. 

Garden in late spring. 

As 2017 continued to show me my shortcomings, it also pushed me immediately into action.  I may struggle with consistency (introducing 2018 word number 1),However, action rather than talking about action has become a thing for me, and I'm holding on to it for dear life. :)  It's a post fire gift.  I was called out very clearly on the areas I wasn't committing to (2) my life or anything in it.  It also showed me where I wasn't being congruent (3).  I would find myself so upset about the ways people were mistreating the planet, without seeing ways in which I COULD do something about how I was mistreating the planet.  

My words for 2018 are commit, congruent, and consistency.  At the end of the day I've decided although it will take a lot of f'ng work it will be glorious. I feel amazing when I'm congruent, so my biggest lesson, take away, goal going into 2018 is to take the steps necessary to be more congruent with my beliefs, be consistent and committed to my health, my life, my work, Steve, my self care, whatever projects my mind takes me on,... Continue to take daily actions, and show up, and educate myself.  

Education was a large part of 2017, with me starting a 2 year herbal immersion class in January.  Now a year in the knowledge has helped me and everyone that comes in contact with me more than I could have imagined.  Becoming educated on subjects important to me grew through the year.  After taking an intuitive class, led me to a beekeeping class, and permaculture.  I want to be an educated steward of this Earth, and I know that until I have the knowledge I'm just fumbling around trying to make a difference.  However, another thing I've learned clearly this year is "Knowledge isn't power until it's applied." Dale Carnegie.  A key example is showing up in my health.  This year, the culmination of all the stress I've gone through the past 6 years (33 years) has left me weak and shaken.  If I'm honest it's 80% my fault.  From eating one meal a day, skipping work outs, eating foods that I know make me feel terrible, and having the yo yo diet.  By that I mean, I'm really strict and eliminate foods that bother me, and then eating donuts for breakfast and a bowl of ice cream for dinner, with nothing but coffee in between.  My health is screaming at me, by ways of low blood pressure and dizziness to actually commit to my health.

 Favorite advice of the year, "Drink as you pour." Ma Jaya Sati Bhagavati

Favorite advice of the year, "Drink as you pour." Ma Jaya Sati Bhagavati

In my years taking care of Steve, if anything it has taught me that our health is a gift. It's not a guarantee that I can keep running off of steam, especially with grueling days like wound care and when Steve is in distress.  Which is why commitment and consistency will be the most important thing I could do for myself in this moment. 

I won't share any concrete plans here, because I really just want to focus on building my balance between committed routines that will allow the space for free flow.  I want to focus on action, instead of taking my energy on telling others on what I plan to do.  So if you're still here with us on this journey, thank you. Truly your support has helped us so much in ways I don't believe they have proper language for.  I truly cannot adequately put the feeling you all give us into words, I just know its the biggest blessing of my life to have it.  I hope you'll stick around, because I'm excited for what 2018 holds.  I'm always hopeful that Steve gets to experience many many many more of these new year reviews, but for now i'll close on what's most important.  Him being here now, and me BEING here too. :) 

 December 2017

December 2017


Much love you all, and see you all in the new year! 


It's all a distraction

After any amount of time I'm off social media, I often get asked why I take long breaks from logging on?  I love a social media break, it really helps me observe what I do with my time, and gives me a lot of insight on how I can make better use of my time.   I have so many important connections I have made on social media, and find the medicine of it to be important, but for me personally if I'm not careful I get totally out of balance with it.  I'll give you some of my reasons and lessons and let me know if any of it resonates with you. 



I have 5 signs that really give me the flag that it's time to take a break.

  1. When I find myself distracted by every sound, notification, social trend, of having to follow a certain persons story, to the point that I find myself 45 minutes later having realized I just spent a huge chunk of time, just shooting hearts and emoji-es all over the place.  Of course I don't want to be 100% disconnected, we already are pretty hermit-ed here not leaving the house; so I only tend to go rogue when my addict comes out to play. 
  2. I really like to connect with people in person, but sometimes I won't reach out to a friend or loved one because I see what they have going on, on social media, I think, "Well I don't have to."  It's only when I step away that I realize how much I crave true connection and while social media lets us story tell and share updates, it isn't the kind of connection I want to have with my friends and family. 
  3. When I find myself admiring what others are doing so much, I forget to do anything myself, if I'm not careful I find myself admiring everyone I love to follow that I find myself here with a day of doing nothing but scrolling on my phone. 
  4. This one is a big one. Hard to admit even. There are days where I will find myself genuinely upset that people didn't give me the response I wanted on a post, or upset when people don't buy my art, or read my blogs.  When that happens I know my reason for doing and being is very much so out of alignment. 
  5. Before this last social media break I observed myself, reaching for my phone at any single pause.  Whether it be a commercial, waiting for Steve to type, when I was blocked while writing, or literally any moment in between. I would reach for it, get lost into it for a bit, catch myself, and find it hard to get back on track. It was a habit, and one that took me stepping away to break; and will take me continuing to be mindful of. 

I find that in our world today, distractions are everywhere.  When you drive in your car the information you take in from all the advertisements everywhere (unless of course you're in the country and if so I know you're loving it, I would :)).  When you check your emails, that 30 junk emails you end up deleting, the social media notifications, the news (that's a whole separate blog that I will write for you soon), ... I feel like this list could continue but you are aware of what your distractions are, I don't have to tell you that. 

What I can tell you is, that the three weeks I stepped away from social media, helped me really tune into how I was spending my time.  I found myself getting so much done.  I of course, had to stop myself from reaching for my phone maybe 500 times a day, but it was powerful to see just how often I do that.  I have written on this before, but I have a way of blaming other circumstances and people when I don't get my goals for the week done. *important side note:* I'm of course not promoting all this doing and hoping people forget about being, but even my down time isn't well spent scrolling on the phone;  drawing, art, time in nature, reading, journaling, writing out all those ideas you keep saying you don't have time for, you fill in the blanks here.  My down time is better used elsewhere.  Truth is it's no ones fault but my own if I don't crush my week.  Steve doesn't distract me by needing me every 30 minutes (average), my phone does. 

Interestingly after being off for a week, friends who I had been hoping to hear from were reaching out, I was getting to catch up with friends, I was connecting with those around me again.  I think this is really important to say, because I know I'm guilty of it, and almost everyone is on a small scale.  When is the last time you actually spoke to someone you follow closely online that you consider a friend in person? OR... When's the last time you went to visit that person who is stuck in bed?  It's interesting that people think because I'm so good at sharing our life that we are really connected.  Are we?  

There's so much noise going on in our world right now, it's a bit of tumultuous times, a small step back however, can do you a huge favor.  When I take a social media break, I should add, I take an all media break.  It is okay to step away from the resistance (whichever side of it you find yourself on) and check in with you.  Sometimes I wonder how many people are just regurgitating information that is so frequently being handed to them instead of forming their own opinions or beliefs.  I know I can fall into that so quickly and when I shut it out, tune in, read, actually do my own quiet research; I know my truths.  I don't have to feel swayed by all the noise around me.  In these days, this feels so vital. 

So if after reading this you feel like maybe you need a small break, I highly encourage it.  You choose your length, you choose the rules; that way it's what YOU need.  I assure you, you'll find yourself connecting with life in a way that just doesn't happen when we give in to all the distractions. 


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.  


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". :)