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.  

13 comments:

  1. To read this is painful but your honesty is raw. I have this in my future. I too belive there will be a cure. There is only hope personally I do not pray but I am certain there will be a treatment. Steve and all the other souls who fight the good fight everyday need to be certain there will be a treatment. Maybe a cure but definitely atreatment

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  2. To read this is painful but your honesty is raw. I have this in my future. I too belive there will be a cure. There is only hope personally I do not pray but I am certain there will be a treatment. Steve and all the other souls who fight the good fight everyday need to be certain there will be a treatment. Maybe a cure but definitely atreatment

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  3. Hope you say things so well. I know if my Michael wanted to be on a vent he would still be here but as you say it is their choice not ours.
    I pray for Steve and all ALS patients everyday.
    Keep up the fight only as long as you feel you can Steve. Prayers������

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  4. Really honest and thought provoking post Hope. I wish you both the strength to continue to face the challenges ahead of you with grace and love, x

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  5. This is as real as you can get. I can't say I know what you and Steve are going through, but I do have my own demons that I am fighting. I think all you can do is to love him, and follow his lead. I pray for you and Steve everyday, and the strength and love that you both show are amazing! You both teach me to hope, and never give up. Thank you for that. <3

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  6. My wife has ALS. The decision to fight the losing battle of the disease or giving up on the fight will be her decision. I will care for her as long as we are in this situation and I will support whatever decisions she makes regarding her care. The disease robs the entire family of peace and joy but I cannot imagine what my precious wife deals with on a daily basis as the true victim of ALS! May God be with you and your family.

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  7. My wife has ALS. The decision to fight the losing battle of the disease or giving up on the fight will be her decision. I will care for her as long as we are in this situation and I will support whatever decisions she makes regarding her care. The disease robs the entire family of peace and joy but I cannot imagine what my precious wife deals with on a daily basis as the true victim of ALS! May God be with you and your family.

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  8. You don't have to be okay with it but I know you will be there for him know matter what because you are tremendous and never have or will let him down. Steve knows that and he isn't done yet Hope why or how could he leave you you are one and the same. My heart bleeds for you both I have felt your pain I have given my all, I have lost my soul mate to that dreaded disease an I miss him so very much, treasure every moment, second milli second they are so precious, you two are the luckiest to have each other some people could never in a million years have what you both have ❤️

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  9. I love how supportive you are of Steve. It's such a big deal to allow someone with a terrible illness to process and be where they are. Steve, thank you for being honest and letting us in on your journey. I love you both so much and I miss you to pieces. �� Love and light. ✨
    Kristin Wolf

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  10. My dear Hope, sending love and prayers your way. There is hope for all of us as long as beautiful people like you exist...

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  11. This post doesn't freak me out, Hope. I think it's brave and so important to talk about end of life decisions. My husband has ALS and we try not to frame his choices as "the decision to fight the losing battle of the disease or giving up on the fight". Those are only two choices and they're both bad. We prefer not to think of 'fighting' the disease - because, let's face it, you can't fight this disease. But instead think of it as "living with the disease" while you can. And making that the very best life you can, while you can. When you can no longer live the life you want - when the dark just so overshadows the light - (and that may be at a different point for each individual) the person with ALS should be able to choose whether or not to continue living with this disease. It is not a choice to 'give up a fight,' because, remember, you can not fight this disease. There are currently no tools to prevent, treat or cure ALS. There are medical interventions to deal with symptoms caused by ALS. But there is no way to prevent, slow or cure the actual disease of ALS. I wish people could move away from the "fight" and "battle" language. That puts so much burden on the person living with ALS. Who wants to fight a battle you know you will lose? How about if we just help these pALS live the best they can and put the burden of "fighting" ALS on the people who don't have ALS? The scientists, researchers, doctors, donors, all of us. WE are the ones who should be fighting for a cure for this disease. And let the pALS use their time left on this earth to LIVE. There is so much suffering with this horrible disease. Let's not add the psychological suffering of giving them an unattainable goal "fight, fight, fight" then write in their obituary that they "lost their battle". Let them WIN by living as beautiful a life as possible under horrible conditions, then let them choose when to let go and leave the suffering behind. I believe this is what you are doing, Hope, and I'm directing my plea to the ALS community at large. Let's hold our pALS in love and light, help them LIVE with ALS, relieve them of the "fight", and accept their choice to be released from suffering when they are ready.

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    Replies
    1. Thank you for this. I also stay away from the word fight because you can't fight it. I use the word support or tell my Mum that I'll stand by her side. She can't fight anything... There's nothing to fight. It's just living and accepting

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    2. beautiful words thanks so much for sharing i'm just now reading this

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