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! 

Tuesday, April 23, 2013

Life is better with you

For those of you who follow us on facebook or twitter you already know about our amazing Wanee experience but I wanted to write a quick blog about the best weekend, ever.

Steve & I as most of you know are always up for a good adventure; and last year we attended the Wanee music festival and enjoyed every minute of it.  We knew that it was going to be a lot more difficult this year but we still wanted to attempt it.  When we saw the line up we of course decided right away we WERE going to pull it off.  Steve & I tweeted Michael Franti a few times; we are both big fans of Michael Franti & Spearhead (if you haven't heard of them---check them out you will love them) letting him know how excited we were to see him perform & asking to meet him.  Being the kind soul that he is, he responded that he would love to meet us.  Of course we were pumped then! :)

Michael went above any expectations we could have ever had.  So after communicating with both his manager & tour manager we had passes lined up & plans to spend some time with him after the show, and that we could venture back stage before to find a good spot for Steve to watch the show.  Right away as we walked in we were greeted warmly by Hossain, his tour manager, who told us Michael & his partner Sara were on stage & we could head that way.  As we saw Michael & Sara for the first time we were greeted with a smile you'd expect from an old friend with big hugs to go along.  They both began to tell us about their experience with catching up on our journey and after sharing some tears they continued to ask more details about our story.  We spent the whole 30 minutes before show time talking with them explaining Steve's diagnosis & sharing how we got married.  You could tell immediately that they genuinely cared and were touched by not only our story, but seeing Steve & me out enjoying our lives.  They invited us to watch the show on stage---which added to the already awesome experience. It was incredible to watch Steve's face light up while watching the show.

Neither of us expected what happened during the show to be a reality.  Before I get into that let me preface by saying Michael Franti & Spearhead put on an amazing show---so much energy, they literally brought out the sunshine & had the whole crowd dancing & having a good time. As Michael started playing "Life is Better With You", he then brought us out to introduce us to the crowd.  The feeling of having thousands of people cheer on Steve & me as Michael told our story was so overwhelming and amazing.  It moved both Steve & me to tears. Looking out in the crowd I saw we weren't alone. It was such an unreal moment to hear someone as well known as Michael understand what Steve & I have been trying to accomplish.  We try our best daily to spread awareness & to spread the message of living life to the fullest & loving one another & he worded it so beautifully. What is even better than that is that he was so moved by our story that he shared it with thousands at Wanee.  Now, so many new people now have a new understanding of what ALS is & what it does to people.  They also got to see Steve facing the hardest thing anyone has to face but still out doing what he enjoys.  He even invited us back out to dance with him for the rest of the song.  It was so much fun! Just an added oh my gosh moment---the song he dedicated to us---I sing that to Steve all the time.  Gooesbumps right. All in all we spent a good 5 hours with Michael Franti & Spearhead, & Sara & we will forever cherish it.

After the show walking through the festival we had so many people come and hug us & tell us how moved they were by our story & people saying that they were so proud to see Steve out enjoying himself.  We even had a few people tell us they felt reborn after hearing what Michael had to say & seeing us on stage.  It was an incredible moment---and it didn't stop there.  Michael then posted our story on Facebook which shared our story with even more people.  The response we have received has been overwhelming & has been so amazing. I have to thank each and everyone of you that sends us love & positive words.  It makes Steve & me smile with each response we hear of ways we inspire you, so please continue to keep them coming :)

Here is a link to a youtube video of Michael Franti introducing us to the crowd: click here :)

SO about the rest of Wanee---was amazing---thanks to Danny & the guys for helping us with camping. Along with getting to meet & hang out with Michael Franti & Spearhead we also got to meet Artimus Pyle, Warren Haynes, & JB from Widespread Panic.  So like I said---coolest day, ever.

Steve & I have been cuddled up behind the computer since Saturday with tears and smiles feeling blessed by what Michael Franti did for us.  It is amazing to think that a celebrity would take the time to do this for us and learn about our plight and share it with all of his fans. It continues to helps us have more faith in people and is another reminder of the blessings that still remain in the world.  Can't help but think about amazing the world would be if everyone had as big of a heart as Michael & Sara do.  Who knows maybe this act will find someone who will in turn to donate the money needed to find a cure.  We are still in shock that this happened to us & that we could be a part of bringing so much awareness to ALS.  I truly feel rejuvenated & refreshed from this & still can't stop feeling like the most blessed person in the world.

To see more photos from Wanee click here :)

Side note---for everyone who follows us in Pennsylvania please check out this fundraiser my dear friend Kate is putting together for us.  If you can come, please do, we would love to see you there! Cinco De Mayo Fundraiser

Thursday, April 4, 2013


I know I have written about this before, but some things have happened that inspired me to write on perspective again.  Recently Steve's chair (he uses a Jazzy) died.  We then had him use a few other borrowed chairs with out much success.  Even after having a newer chair a little customized, it is still not functional for him.  We are still not sure if his Jazzy is repairable and if it is going to be something that we can afford, as the repair company is not able to get to us until tomorrow.  My prayer & hope is that it is something that is a quick affordable repair, however if not we will have some new challenges to face.  Steve has tried several different chairs but do to the progression of his ALS his arms & hands do not work the same and he is unable to drive the chair with the ease he is able to with the Jazzy.  

I never gave much thought to just how much a change of a wheel chair can be such a set back, but for someone with ALS who already experiences such limitations in mobility to all of a sudden not be able to move on your own or have to try to use something else is very difficult.  It gave me some much need perspective about being grateful for my mobility & my independence.  I know sometimes it's hard because I went from being the girl who went out every night to the girl who stays home (when we aren't traveling) most days to not feel like I'm "missing out";  then things like this happen and make me realize that in reality I'm blessed that I am capable to walk on my own, I'm capable of being able to drive, to talk on the phone, to text or write an email.  Here is Steve in a wheel chair that won't move, having to ask me to type for him (although he is able to do some, it just is hard for him),  take him to the restroom, shower him, feed him, wipe his nose, etc---and to now not having a working wheel chair.  It's opened my eyes yet again to realize that I never have any reason to complain----ever.  

I'm asking that everyone please pray that the repair goes well tomorrow and that it is something that is affordable and fixable.  If that's not the case please pray we are able to find him a jazzy to replace his current one.  This is a huge burden for Steve & while he feels bad that he's letting a chair get him down; it's completely understandable.  On the outside looking in some may think that he should just try the other chair that was provided until he gets used to it, but being here seeing the frustration & pain it causes Steve to not be able to use the chair properly I understand.  

This is just a small glimpse on to the things an ALS patient goes through---and the independent mobility was the one thing that kept Steve positive.  He was able to wheel around the house or easily get in the van for us to go somewhere with the Jazzy and now he's not able to independently do anything.  

Thanks again for all the constant support & prayers.  Thanks for letting me come to y'all when we need something.  I will hopefully have more answers tomorrow and will either be calling on y'all for help or giving a very excited update.  

Much love as always. xox