Monday, April 29, 2013

Some days are better than other days...

I try to keep most of my posts positive because I try to keep most of my thoughts positive, but sometimes I have to write real blogs for y'all because of how real ALS is.  

I have to say that watching a loved one deteriorate is probably one of the hardest things to do...but add any addition pain for your loved one & it turns pretty horrible.  Steve has been having some issues with throwing up after meals, but never consistent enough for me to count it as something in his food.  My only other connection I can think of is phlegm.  Steve, like most ALS patients, has an excess amount of phlegm but as of late it seems worse.  It has a cough some days but it's not consistent and there are no other signs of it being a bug.  After speaking with his doctor this is one of those "can happen with ALS" explanations.  I honestly try not to think about what bad can or is going to happen in the future, I like to focus on the present moment; and focus on the positive that still remains & positive in the future.  Just on days when Steve is sick on top of ALS I catch myself fearing too much of the negatives that could happen.  It's a good thing that I pay attention to assure he gets the proper care but even after talking to doctors and assuring he has all things that can help if I'm still thinking of it---I have to work double to change my thoughts off the negative. 

On days like these I tend to pull the whole "oops I forgot to drink anything in the last 5 hours oops did I eat today?" & it makes me think of all the other people out there taking care of their loved ones (whether it be ALS or something else) & the importance of the caregiver taking care of themselves.  The reality is how well can you take care of someone if you aren't taking care of yourself.  Although I truly put a lot of energy into taking care of myself I forget & wanted to write on this in hopes to remind all the care givers to make sure they take time to care for themselves.  

One thing I have found that has been my most helpful "take care of me" tool has been yoga. Now I am still not to where I want to be with my practice, but seeing progress always makes me happy. :)  I originally started yoga to help with strength to lift Steve, balance for when I do lift him, as well as to help with any extra pain affiliated with all the lifting & moving.  I never knew that it would become more.  First of many is it's my reminder to make time for me---I do yoga at home with so that if Steve has any sort of emergency I'm there.  However, it is the time where he gives me that he won't ask for help with an itch, getting a drink, etc.  It has also been another one of those reminders not to doubt myself.  I used to think a lot that I wasn't capable of certain things, as I have so often proved myself  that I am in fact capable with taking care of Steve; yoga has done the same.  It's a wonderful reminder that with determination, the right attitude, & practice I can do anything. Surprisingly I find it even helps me get more centered.  I am VERY scattered brain (not negative talk, just true;)) & with all that goes into caring for someone with ALS it has gotten worse---so yoga helps me get centered and focused to where I find myself becoming more mentally clear.  I'm grateful I didn't let other people's negative view of what yoga could be stop me from taking my own journey with it.  It's helped me a great deal along with journaling, praying, mediation, & vent sessions with friends.  

It's so important that we all find our own self care technique & you'll be surprised to find that when you start in one area you will continue to carry through in others.  IE: working out can lead to eating right which can lead to more energy to do better work, etc....

To all of my caregivers out there, please remember that you are valuable & you need to make sure you take care of you. AND---I will always try to practice what I preach :)

Also, please be praying for Steve.  When putting him to bed tonight he seemed to be on the mends, but please be praying he continues to feel healthy & we don't have any more set backs.

A huge thank you to every single person that follows our story, shares it with others, shares your stories with us, shows us love, supports us, &  surrounds us with prayers & warm thoughts.  You all reenergize us when we feel low & help continue to lift our spirits in hard times.  Lots of love to everyone! 


  1. Hope, thanks for being so transparent. You are an amazing woman of God! Be encouraged, knowing that Your Heavenly Father is very proud of you and you are doing exactly what He put you on earth to do. Praying for you and Steve this morning. God bless both of you.

  2. If you have ever flown on an airplane, the stewardess always tells you to put on your oxygen mask before attempting to assist the person next to you.

    Hope, you are truly an inspiration. I was at Franti's show at Wanee and I was moved by the love and devotion you have for Steve. May God grant you the strength to carry on.

  3. I know it's not exactly the same thing but when you made the comment about "oops...did I eat today" it reminded me of myself with a newborn. I was so wrapped up in making sure that I was taking care of her that I stopped taking care of myself. I would literally go a day and a half before realizing that I hadn't eaten anything and that started impacting every other area of my life...I wasn't sleeping well because I wasn't getting the right amount of nutrition (not to mention the lack of sleep caused by a newborn) I was moody and emotional and that made everything seem so much harder. The doctor finally said to me, "Lindsey, you can't take care of anyone else if you're not taking care of yourself first." Not that I am telling you anything you don't already know, just a reminder that sometimes you have to be selfish and think about yourself in order to selflessly care for someone else. Keep up the good work because you are an amazing person and a wonderful caregiver...Steve is incredibly lucky to have you :)

  4. Hope-

    Someone sent me your blog and I've enjoyed reading your story. I also am married to a Steve (all the good ones are named Steve!) and he was diagnosed with ALS in February, 2011. I also chronicle our journal on a blog (though I often veer off track and talk about cupcakes instead). Stay strong, sister. Glad to be fighting by you on the battlefield.

    Bo Stern

  5. Hope, sharing such deep and raw feelings with the world in order to help others is the highest of all acts. You are my heroine.

  6. Hope, I just saw your story on My daughter and her 4 friends have been singing for 4 years to raise money and awareness to help find a cure for ALS. Your story is so touching. Please go to and download their songs. ALLLL proceeds go to help find a cure. There is one song called 'Keeping Faith' written for them to sing to those battling this disease. They can also be found on They sing at fundraisers, churches, ALS walks, College baseball games (SEC Championship game the last four years) and ANYWHERE where they can spread awareness of this illness. You and Steve are in our prayers! We would love to sing for anything you are doing too! Blessings! Go listen to Keeping Faith! It's for you and Steve!

  7. I too saw your story on AOL. My mom suffered from myositis, which is similar to ALS. Can you please post an address when we can contribute to Steve's care?

  8. Nice Post! I enjoyed reading it.Thanks for sharing.