Friday, September 16, 2016

When life gets complicated you adjust.

This will be my last blog for a little while.  I plan to take an extended social media break starting tomorrow, that will last for as long as I need it to. I'm using the full moon today, to jump start some changes, and for that reason I will be disconnecting so I can focus all of my energies on what's going on here.  As usual don't worry if something happens that is worth reporting, positive or negative, I'll let y'all know.  I appreciate how much you all do care about Steve & me, and how much you love to follow along with our journey.  

As most of you know, Steve's laundry list of complications have grown to an overwhelming amount. I don't always do the best job sharing this kind of stuff with you, so I want to go into it here.  This is just touching the surface, but will give you an idea on why it's hard for me to get anything done around here.  I consider it a huge blessing to be able to care for Steve, and the extra projects are never as important as taking care of Steve; but because he requires more time for me, I need to really get a grip on my "me" time and get a routine in so it's used best for my mental/physical well being.  

To start with we have the wound on Steve's left lower booty cheek, that's been there since April.  We are healing thankfully, and while we have decreased turning him by one day per week, we are still spending large quantities of time to assure we continue on the right path.  Steve's right lower lobe of his lung has collapsed on itself from this chronic infection he has had for 3 years now.  There's the constant trial of antibiotics, ranging from IV to feeding tube, that his body is slowly rejecting more and more.  He's currently on a break from all antibiotics due to extreme stomach complications from them.  Then comes the feeding tube, that because his body only gets fed IV foods (due to the gastroparesus) the 'holes' introduced to his body have all stretched; feeding tube included.  Now it leaks stomach acid on the hour, requiring immediate cleaning of the site and redressing.  The only way they will change his tube out from this point on is if it stops working, because the more they try to introduce new tubes, the more stretching we will have.  Now comes our biggest & scariest complication the trach.  If you followed us closely while we were in the hospital, you know Steve has the largest trach made, and unfortunately his trachea and stoma have deteriorated.  It's speculated these three things are the cause: from when Steve would violently vomit anything put in his stomach (back in his rapid approach to the 67 lbs days), the copious amounts of sputum in his lungs constantly trying to come out, and again he's fed IV.  The TPN (IV food) saved his life, but it only goes so far in nourishing, food (and water) really is life. So Steve's trach will now leak 5-6 times a day requiring extensive trach care, packing the stoma, and adjusting the cuff to stop the leak.  Of course, all while helping Steve maintain his calm.  Because of constant stomach problems, we have an absorption problem.  Doctors are unable to figure this out, because some days, Steve will be given his medication and he feels like he hasn't received any and some days he gets the same amount and he can't even open his eyes.  Since the overdose that happened in December because of the absorption problem, I have to monitor his alertness to determine dosage of medications.  Because there is no way for us to fully comprehend his body, there is no clear cut dosing for him anymore. 

So this is just the additional add on's to what ALS already presents us with.  If you've ever watched the movie, The Revenent, with Leonardo DiCaprio, most of us have compared him with Steve.  He is constantly facing challenges that can easily kill him, yet he overcomes every one, much like Steve. Every discussion with a doctor is the same thing, Steve's outliving everyone's expectations, and they really are all doing the best they can, and keep praising Steve on his strong will to live.  Both of us truly understanding this journey is a day to day, accepting that any number of these complications could be enough to take him, we are facing the impermanence of life daily.  Fortunately we also choose not to live in fear, and instead live in gratitude for everyday we do get.  That part was easy to adjust to, what hasn't been is how I should be spending the time when Steve's napping/resting/watching football.  Because it's all so much for my brain to comprehend some days I just walk laps around the house trying to decide what I want to do.  

So, until I can get a full grip on how to truly nourish myself with some down time everyday, I'll keep feeling depleted, overwhelmed, anxious, and frustrated.  I am okay health wise, so please don't get alarmed; when I explained this to some close friends they immediately became concerned that maybe I wasn't well.  I promise I'm okay, and this is to assure I continue to be.  I will of course be keeping up with my daily writing habits except mostly it will be for personal growth and the book.  If I write something exceptional while I'm gone, I'll tuck it away to share when I'm back.  

I'll leave with this simple truth:  If I can create a consistent, realistic, routine between Steve and myself, I can accomplish all I want to.  I know I am capable of all that comes to my mind, I know I can do better with my time, I know I can continue to maintain my vibrant health, and I know I can keep Steve going as long as he's in, I'm in.  I know I can do this all, but know it requires some changes that will take work.  SO, with that said, I will see you all as soon as I'm happy with the course we are on.  

If you need me and can't figure out how to reach me, email me  I will still check my email a couple times a week, and if you have my number of course text me.  Hopefully after I get a balance I'll actually get better at replying to people; although I wouldn't hold my breath (some things never change ;)).

We love you, and again thanks for caring, supporting, praying, etc.  You all help us so much more than you will ever know.  


  1. Please God be with hope and Steve and I hope her in every way that she knows that we support her and give her strength she's so brave and Steve is in their love is just as powerful as the love that you have for each of us

  2. I continue to hold you and Steve in my heart and in my prayers. Sending so much love and big hugs to both of you.

  3. I hope a miracle happens and Steve's body starts recovering by itself! I believe and have my faith in Allah's power to heal his creations.

    The Prophet (peace and blessings of Allah be upon him) used to place his right hand on the sick person and say (three times) Reported in Sahih Muslim

    Azhibil ba'sa rabban naas
    washfi Antash shaafee.
    Laa shifaa-a illaa shifaa uka
    Shifaa-al laa yughaa diru saqamaa

    “Take away the pain,
    O Lord of mankind,
    and grant healing,
    for You are the Healer, and there is no healing
    but Your healing that leaves no trace of sickness"

    It was narrated by Ahmad and Abu Dawood that the Prophet (pbuh) said:
    “Whoever visits a sick person who is not yet dying, should recite the following dua seven times in his presence”:

    أَسْأَلُ اللَّهَ الْعَظِيمَ رَبَّ الْعَرْشِ الْعَظِيمِ أَنْ يَشْفِيَكَ

    ‘As’alu Allaaha hul azeema
    Rabb al-‘arsh il-‘azeem
    Ayyn- yashfiyaka'

    "I ask Allah who is the Lofty and the Lord of the Mighty Throne that He cures you"

    Please read this out to Steve, even if you don't believe in Islam, words do have an energy and power to heal.

    Good luck Hope!

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  5. Thinking of you both as you journey down this difficult path. X

  6. Praying the peace of God that surpasses all understanding to fill both you and Steve and all caretakers involved here. Praying for healing for Steve, Lord Jesus i just Pray you will touch Steve with a healing touch of your of love for him. The hem of your garment will do. Whatever the way, I just pray a radical healing touch upon Steve. I pray you will fill Hope and Steve will all the fruit of the Spirit and more.... Just praying a supernatural touch on them both. Give them an incredible testimony to share. I pray creative strategies, supernatural strength, restored hope, peace, joy, provision. I pray you will send your laborers, helpers to help carry Hope abs Steve during this time. I pray your Spirit fall down on them, boys them, anoint them, lavish your perfect love and peace on them. Praying your wisdom and faith upon them and every desire of their hearts. In Jesus name I pray. Amen 😘💕🙏

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  8. Prayers, blessings, love and light to you both sweet angels. xoxo

  9. Your love and commitment give me strength. 8 months ago the love of my life was diagnosed with BULBAR ONSET ALS. He is 34. I am 29. We have a 1 year old son and together have 7 children. I am doing it all alone. Work shopping cooking cleaning school kids dr appointments pharmacy runs sitting up at night making sure he's breathing wondering how I'll ever get thru to the next day locking myself in my car and screaming before I come inside from work wishing I could runaway from it all. But my love him overpowers any other emotion I feel. Thank you for sharing your story. Thank you.

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