Tuesday, April 26, 2016

The teeter totter of life...

Yesterdays blog rattled a few people, and if I'm honest it rattled me to write it.  So how does one follow up such a raw blog...

By coming back to the present.  The now. It's coming back to the fact that for now Steve is alive and fighting; and while he's here, we have work to do. :)

Obviously all of our futures are unknown, and ALS and it's nasty little curve balls are in the abyss of the unknown; it's a poignant reminder that all we have is this moment.  I plan to make the most of every single moment I'm given.

In life it's a balance of preparing for the future while staying present in the moment.  This moment is scattered with things that happened in the past as well as things that have yet to happen.  The reality of the future and the possibilities are there, but what's important is not letting them swallow the actual moment.  

As a kid I used to try to walk the teeter totter like a balance beam and when I would have it where I was in the middle and both sides were up and still; is that balance I'm looking for in life.  Where you know at some point this is going to happen, because all this happened in the past; but you're so present that this very moment feels magical and it's all you focus on.

That's my ultimate goal in life, which isn't always easy.  Because sometimes the past or future are so huge they overshadow the now.  Coming back from say the conversations I've had with Steve, about me having to realize that at some point yes he will be done, to then us truly living in the now; takes work.

So how do we do it?  To be honest that's when we reset with a meditation and a dance party.  Yep both.  After we shake off the harsh realities of ALS, it's not that we go into denial; it's that we learn to live fuller lives because of the facts.  We cherish every single day as we all should (totally quoting Steve from our documentary, which have I mentioned comes out May 3 :)).  It makes the moments much sweeter. 

So while yes I am constantly working to be strong enough to stand by Steve's every single choice he makes. RIGHT NOW I am going to soak up every single minute of his energy, of his love, of his inspiration, his wisdom, his beautiful mind; because this moment, today; he's choosing life---and for that I'm thankful.  That's all that matters right now.  Is the now.  

So for everyday I get I will count my blessings and soak it all up like a sponge, I will stand beside him whether I'm ready or not for the future, and I will still hold on to that hope; because it's all I can do. 

Monday, April 25, 2016

Don't freak out...

I've been a little silent on the blog life since the hospital trip and being home.  I knew my first blog post was to be about the past visit to our home away from home; but I needed to process it.

Something happened this trip that hasn't happened in previous ones that took me a little extra to digest.  Steve reached his breaking point.  Not just a fleeting moment of "I can't do this."  His actual, "What am I doing?  This is crazy breaking point."

If you follow us on Facebook you probably read his status, if not; here:  
This last hospital stay, I said I'm done with this life to hope. I said to call just call my parent's so that I can say goodbye to them, so let me paint you a picture of the last twenty four hours. I just found out that my pick line had yeast infection in the site that was pumping yeast in to my blood stream, so they pulled it out ok, so I'm feeling good with this, then they tell me that my liver enzymes are going down crazy fast because of the tpn food's I'm on, and that I'm not really allowed my pain meds. So, they need to get my food in me, so the simple things will be to stick me with an IV, oh yeah, but they already shot all of my veins through previous visits etc. So, they sent in six of their best at finding veins. Well, they didn't tell these brave men and women that I swollen to double the size of my normal self, so they were putting the turnicut on so f'n tight and digging in my arm's, hand's etc to find a vein. This went on for five hours or so. Mind you I'm not allowed pain meds throughout this ordeal. I was stuck upwards of seventy times in that span of time with the digging around. So, lets go back to when I said MERCY God and to hope. Okay I woke up at two in the morning with a one hundred and four degree fever. So f'n cold I was, and the only thing they can do is a freaking ice bath. So, hope and my nurse KAY were dumping ice on me and putting ice soaked towels on me that would be hot to hold after five or ten minutes on me. I gave up for ten minutes, thank you God that my dad didn't answer the phone calls or I would be another stat on als's board. I'm so happy to be alive and I love Ya'll so so so much, and i'm to my wife who kept putting ice on my naked body even as I was giving up, you're my angel, fighting through your tears for me, I'm so so lucky you're in my corner, I love you so much boopy poopy. Als is not going to win, we have a new plan. God bless you all, I love Ya'll so so much and thank you for your support!!! 

(Steve meant his liver enzymes are high not dropping.)  

So since being home from the week long hospital visit, I keep waiting for Steve to perk back up to full out positive Steve.  However, it hasn't happened like it has with the other trips.  He's still fighting with all he has but his mind is tired.  When his body has been taking a beating his minds always gotten him through.  I don't believe Steve is giving up but I can see this disease stealing that sparkle little bits at a time.  

So how am I dealing with it all?  All in all I would say so-so.  Part of me is working to build him back up; both his body and his mind, where the other part is trying to allow him to feel however he wants.  This has always been his journey, his choices; and it's hard not to want to force my "stuff" onto him.  I want him to feel the same way as me, and that's not real life.  

Up until now, my usual motivational speeches, silliness, and meditation ceremonies would always help him come back from the darkness that is ALS; this time it's really up to him if he wants to come out or not. It's teaching me to step back.  It's teaching me to let go of control.  It's teaching me to accept.

Accept what exactly I don't know, but it boils down to this.  When I said yes to marrying Steve and going on this journey with him, I said yes to supporting his choices in this.  It's not about me.  I battle the it's all about me Leo side in me daily, so this one is hard.  

Obviously, this isn't a blog to get everyone stirred up; you read it Steve's still here and he's still fighting this beast.  This is a dialog about me accepting the reality of , "How long can one actually withstand this kind of a beating."   It's about the impermanence of this life. I always talk about taking in nature and all the beauty because it's not permanent and will go away, and truly try to view our lives with that in mind, but secretly (or maybe not so secretly) I've always believed ALS would have a cure by now.  I did.  Sounds crazy to those who have gone through this for 20-30- even 40 years for my unreal optimism of a cure/treatment; but I truly believed it.  

Life with ALS is beyond what you read about ALS symptoms, it has layers and layers of complications. When you stump and awe your medical team because of unseen before complication after complication; it's exhausting.  I have to stop fighting the acceptance of this reality because when I signed up for this, I signed up for standing behind Steve's every decision, and if one point he says, "Okay I fought the good fight, and I can't physically do it anymore."  I have to be okay with that.  I just have to.  

Tuesday, April 5, 2016

Team HOPEforSteve medical edition

So as we are in the hospital we finally found some stability and answers so I finally feel the energy to allow the words to come. 

So I wanted to share with those new to our story some of Steve's ALS story.  If you've followed us a while thanks for being with us along this roller coaster ride.

So Steve had been experiencing symptoms for almost 5 years before diagnosis.  He was misdiagnosed with every single symptom until the falls started. So once Steve received that diagnosis the beast took over.  Here is a brief timeline. 

August 2011 diagnosis
July 2012 After months of falling Steve finally accepted the wheelchair
Feb 2013 Feeding tube was placed as Steve's swallowing was beginning to get worse and he continued to loose weight.  The feeding tube got a terrible infection 2 days after placement.  
*This was the start of infection phase. 
From there out, UTI's every other month. 
May 2013 We came to the hospital for pneumonia and after Steve died on me twice he ended up with an emergency tracheotomy.  
June 2013 First diagnosis with lung infection Pseudomonas & MRSA
*This started our Bug phase. 
June 2013 Steve also began to vomit after meals where we spent a long 2 months every other week in the hospital because Steve couldn't keep food down and would aspirate and end up with pneumonia and of course pseudomas & MRSA were on board.
August 2013 after 2 months of fighting with the insurance company Steve was 67 pounds and unable to even tolerate water.  I took him to the ER while refusing to go home without IV foods TPN, 
*This started TPN phase. 
Feb 2014 Steve made the decision to go on the vent full time after a rough few months with breathing.  
*This was the start of progress phases 
After this the TPN and the vent helped Steve immensely, obviously to go from 67 pounds to 155 * probably 10 of those pounds being edema. 

During this timeline at each phase we encountered different doctors telling us that Steve was dying and there was nothing they could do for us.  We encountered the several stories that went something like, "Well, Steve probably won't fully come back from this...."

Well, he did thankfully for so many reasons, but one important reason was finding Emory Johns Creek.  We sorted through doctors to build us the best team.  Including: Intervention Radiology who are the best in the state to help with feeding tube & picc line, Infectious Disease doctor, Pulmonary, , Gastroenterology doctor, Urology doc, Primary Care doctor, an incredible pharmacy team, and a great hospital with skilled and incredible ER and ICU staff .  

So the more we come to the hospital the more complicated we've become.  From holes in stoma, comas, stomach acid leaking from the stomach, to building antibiotic resistance, to sepsis, and yeast infection in the blood.  

Today I was expressing my gratitude to pretty much everyone we saw because along the way a lot of people have given up on us but the Emory Johns Creek staff and our team we've built has never given up on us.  Essentially Steve's one of their most long term complicated patients and they never give up on us.  They will do everything possible to help us to the other side of each hurdle.

One of the doctors replied to my thanking them with a sincere, "We aren't doing it alone, your love heals him too."  

From staff bringing me meals, gifts, and just coming to show us their love, to them working diligently to help us figure out each new complication we bring.  It's a blessing.

I hope everyone can find as supportive of a team when facing an awful disease, like ALS;  and all the complications it brings with it.  If you've been told by a doctor that there was nothing they can do for you, find someone else.  I promise good doctors exist.  I know because we have a handful of them.   

If you want to know more of our journey in detail make sure to purchase the Hope for Steve documentary that will be available May 3rd on Amazon, iTunes, and Barnes & Nobel.  Also, stay tuned for my book hopefully coming next year. :) 

Thursday, March 31, 2016

care giving PTSD

When you watch the one you love and care for stop breathing twice, it effects your view of life without you even realizing it.

I have written about this before, but I cannot stay my cool and calm self when Steve has anxiety attacks.  For the longest time I didn't understand why his "anxious face" immediately triggered me. Until last night.

Steve woke up twice feeling pretty crummy and having a lot of anxiety about how he felt.  After a few hours of our normal" feel better tricks" not working, oils, massages, rearranging, praying, music, and eventually a good cry of release, he was still having so much anxiety and pain.  After I finally caved and gave him benedryl as a last resort to let the poor guy get some sleep it finally dawned on me.  There I am exhausted, scared, feeling alone, and worn out and having an epiphany.

It should be known that epiphany's are my favorite thing, but they always happen in the middle of the night when I should be sleeping.  However, this one was remarkable.  I realized that I have a touch of PTSD, about those times a little under 3 years ago when Steve died on me twice.  Because the actions he was having right before and during the code look EXACTLY like his panic attacks look.

So now, after all this time, every time he has a panic attack, I do too.  Because to me my mind immediately goes to me loosing him.  It's a head game.  ALS is one big head game.  

Laying in bed watching Steve sleep last night I realized I have work to do.  Steve deserves me to be the strong and calm Hope, and not panicking with him.  People will respond to this probably telling me it's normal and not to put so much pressure on myself.  Which I appreciate, I really do; but truth is, I DO need to work on it.  Because I CAN.   

I want to be Steve's rock and now that I know where the response comes from, I will be off to work.  I'll let you know excitedly I'm very sure when I can make it through an anxiety episode from Steve without feeling overwhelmed myself.  Because it will happen.  I'll be patient with myself but also know it Will happen.  


Wednesday, March 30, 2016

caregiver social anxiety

I know I'm not alone in this one.  

So often when I'm in public and I try to have a small talk conversation with others, I struggle.  It gives me anxiety and I feel like I don't have anything to add.  Conversations about activities going on around us, new restaurants I should try, how their kids soccer games went, concerts, vacations, normal life stuff.

Except I don't have a normal life.  I mean of course it's normal to Steve & I, but those talks about their vacation to the beach last week doesn't really have much in common with my husband struggling to breath because the ridiculous pollen count in Georgia right now, or the fact that his feeding tube is leaking stomach acid.  

Aside from that, small talk also makes me feel superficial.  It's one of those conversations I have and at the end I'm rolling my eyes at myself.  Did I just say that?  Why?  That's not what I actually think? I have a panic response and start complaining with the lady checking me out of the store about the traffic because of construction on the road.  Do I actually care about construction?  Nope. Not one bit.  You know why?  Because I leave my house for an hour every 2-3 weeks.  Why would construction actually matter to me.  Why didn't I just say that?  

As a caregiver when I'm out of the house, I'm not fully out of there.  A part of me is always home, responding to whomever is staying with Steve, and constantly checking my phone to see if they need me.  Listening to people around me talk about their day to day lives often leaves me silent and feeling awkward.  Because I'm not present enough to even be able to add to the conversations, let alone anything witty.  It's usually a smile and a oh yeah.  

It's good that I am aware of this, because it's something I now work on.  Today at the eye doctor, I really tried to engage with the doctor about how his 3 year old leaves him wanting to sing songs to his patients.  "That's cute, "I say, as I'm thinking about how much Steve and I wanted children.  It was my choice not to have them.  Steve has baby fever daily, and I know I couldn't take one more single thing onto my plate and a child is more than a plate full.  I try not to bring myself into the room and not make it about me, but it happens.  

So today's appointment was about more than just my eyes.  It was about me needing to work on being present in even the most uncomfortable situations.  It's learning to walk straight into the awkward, embrace it, feel it, and learn to deal with it.  Rather than shutting down every chance of small talk. The random encounters used to be my favorite thing, and I will get it back.  Now that I'm aware of it.

Anyone else know this struggle?  What are some of your tricks? 

Tuesday, March 29, 2016

Divine Feminine Energy

Okay ladies.  This blog is for you today.  Men you could probably use a little freshen up on this as well. ;) 

So often as females we are made to feel bad about what makes us feminine.  Our curves, or bodies, our menses, our emotions, hormones, our nurturing...

It happens so regularly now that it's become a norm to tell a woman, "Stop PMSing and get a grip." Along with being called names if we show to much skin, women being shamed for breast feeding (I mean this one will never make sense to me), we care too much about others emotions, or act too maternal , etc.... The list is endless in ways in which we have become a woman shaming society.  

This morning I woke up feeling bad, because yesterday I was feeling too many emotions.  I was experiencing the heaviness of the flow and I took the day off mostly.  I didn't want to watch a movie with Steve yesterday, I didn't make the list of things I had planned to make, or schedule those appointments, I didn't do much.  (However, being a caregiver you don't get days off, so I was still showing up to my job, but just not doing anything extra).

I felt drawn to walk around this morning and pick up all the beautiful flowers that the trees have dropped and use them in my sacred space and while meditating. I had a beautiful image come to mind as I sat in this space.  That on days where my emotions are heavy, it's the days I should celebrate my femininity the most.  I should celebrate all that makes me a powerful, strong, soft, caring, divine female.  Own the emotions that come with it and celebrate my ability to FEEL life.  

So today I did just that, my meditation turned into a full ceremony.  I celebrated my feminine energy and instantly I felt more energized, more positive, and more capable.  Of anything.  It really inspired me.  So much, that I decided to write a blog on "the flow" ;) 

But in all seriousness ladies.  Don't beat yourself up when you experience emotions or moments of unsteadiness; instead take time to celebrate all that goes into making you the radiant female you are. It will shift things for you I promise.  I plan to do this every single month.  Because what happens to my body is special and makes me special, and it's something I won't be ashamed of anymore.  I will instead use the excess energy for the good.  <3  

Monday, March 28, 2016


Growing up learning to depend on nature, I felt like I had a true understanding of impermanence.  The tragic beauty of it.  That just as the cherry blossoms bring magic to your life but will quickly disappear (the blossoms last just under 2 weeks), however, nothing taught it more than ALS. 

When Steve was in the hospital for pneumonia, he stopped breathing on me & they had to intubate him (put on vent) and we almost lost him.  A week with some great care he was able to come off the vent for 2 days.  He was able to talk to me again after a week of using a communication board.  I remember crying at the sound of his voice & although we were exhausted from the past 2 weeks, all we wanted to do was talk.  For 2 days until suddenly it happened again. 

He stopped breathing, this time he died for 10 minutes.  Thankfully they saved his life & he then had to get an emergency tracheotomy.  It was time & we weren't ready.  We needed more time. More conversations.  Which thankfully we have because of brilliant technology but sometimes when I hear Steve's voice on recordings it's a poignant reminder that nothings permanent. Nothing's guaranteed.

So enjoy every single minute of every single day.  Because the beautiful gift of impermanence is the reminder to soak in this moment as much as possible.  To stay present & let the rest go. Because the rest truly doesn't matter right now.  All that does is this.