Tuesday, February 7, 2012

Friendly little reminder

I wanted to write a quick blog about the friendly little reminders life gives us.  Recently, my eyes have been opened to a lot of things going on around me; meetings with people at work that show different signs of certain directions I should go in, events happening that remind me of certain morals/lessons, and most importantly my reactions/actions I have to all of these things.  This is going to be a raw/hard to write blog, but it's also therapeutic and I owe it to everyone to be honest with daily struggles.

Steve & I have been working on a few things:

First, is to continue our positive attitudes.  We daily try to remind ourselves that it's important to have a positive outlook, no matter what the situation is.  So sometimes this comes very natural.  Sometimes I have to literally "snap" out of it, read something, deep breathing, call someone, etc.  Either way it takes that extra effort that day.  Then there are the few times where I have no positive energy and want to bite whomever is closest to me's head off.  (YES I am aware this is not proper English, but I am okay with it) Usually when that happens I feel bad, apologize, add some extra meditation, or whatever I can to get back to being "happy Hope".  Positive thinking is a powerful tool & it's something we work to increase daily. 

Second thing is perfecting our routine.  Steve has a lot of helpful/healthy things added into his daily routine which I help prepare.  They say it takes 2 weeks before it's a habit.  I call BS on that....cause this is something Steve & I still are adjusting to.  Each day however, we get more on "beat" but it's still a work in progress.  With adding new things to a routine, the adjustment also requires patience.  Often times Steve & I are so "caught up" in trying to remain positive/do what is best/stick with the routine, that we forget to just be the Hope & Steve that was so bonded to get through the initial ALS diagnosis.  This is something that I know all couples/spouses/friends/families/etc struggle with, and I think it's just a little more of a stumble for us with everything else piled on top.  Speaking for myself, I can't even explain the love I have for Steve & also can't explain the "care"  I have for him, which is why sometimes when I get "caught up" I need to remind myself that some of the small things aren't important. What is, is staying true to the love in my heart. 

Third is to stop acting "flaky".  Steve & I for a while were always up for whatever plans people threw at us.  Middle of the week dinners, weekend plans, trips, visits, etc.  However, for roughly a month or so, we both got into the "don't want to leave the couch today" mood.  I recently heard the saying, "If it's important you will find a way if not you will find an excuse."  It resonated with me so much for about a week, and Steve and I then watched "Yes Man."  After that I realized that I was probably giving off the message that certain people weren't important to me because we would make plans & then not keep them.  I never want people to think they aren't important to me.  This bothered me so much that I actually kept a gym date.  I have a history of blowing off ANYONE that asks me to do anything involving working out, haha...and my health is important, and everyone that's invited me is important.  So it is time to stop blowing it off, right?  Now there are still ALWAYS going to be times that Steve & I may have had something planned that we just can't do; physically it may be too much for Steve, one of us could be sick, Steve could just not feel up for it (which is okay & is going to happen), but I don't want to get stuck in the routine of constantly blowing things off & having people think they don't matter.  Because we value EVERY single friendship/family member/relationship we have, it's because of everyone around us supporting us (& with God's help) that we are able to remain positive.  

I am so thrilled every time I see awareness brought to ALS, and recently the story about Steve Gleason was aired, and it reminded me of the spirit (my)Steve & I are filled with, and why it is important for us to continue to work through all of the above.  Before even seeing this, Steve & I decided with the help of our very talented friend Taylor Graves that we wanted to make a video to share with the ALS association and with as many that want to watch it, to help spread awareness of the disease.  And this video of Steve Gleason was the friendly reminder of why we are doing what we are. 

I'd like to end on a thankful note, and remind everyone that supports us that we are grateful for you, and every single thoughtful word, act of kindness, reaching out, etc is so important to us.  Which is why it's important for Steve & I to continue to strive to be the best we can & handle life the best we can! :)

Love!

5 comments:

  1. Hope, I came across your story -- my mom is suffering from ALS. I am so sorry to hear you and your husband also have become victims of this terrible disease.

    I am not sure if you have someone already, but I know when my mom first was diagnosed and was progressing, I wished I had someone who had been there to talk to. I am happy to be a friend to you in this disease, if you ever need. I do speak about my mom's illness in my blog -- all under the ALS tag.


    Much love and support to you and your husband.

    Lisa http://myhappiness-log.blogspot.com/

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  2. I was in the same situation with my wife nearly 19 years ago after being diagnosed with ALS. We will celebrate our 18th anniversary this October and we have 3 daughters (16, 9 & 6) even though I have been on a ventilator for 14+ years. Don't let the doctors tell that you cannot have a long marriage. Good luck Steve and Hope!

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  3. Hi. The worst vice is advice, but I am sending you these links anyway. My job requires me to read an obscene amount of research papers and there is some promise WRT ketogenic diets and ALS.

    http://www.focusonals.com/ketogenic_diet.htm

    I think human trials are ongoing.

    Here's some anecdotal evidence. http://www.als.net/forum/Default.aspx?g=posts&t=46518

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  4. Thank you all for reaching out & for all of your love support & information. We appreciate it all....thank you thank you thank you!!

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