Monday, June 25, 2012

Cup runneth over...

Hi all :)

I know it's been a minute since I've blogged---& I need to step up my game with keeping y'all updated.  ::Insert ashamed face here::

I must admit I've been overwhelmed lately trying to stay on top of things---but no complaints here---it's a good thing.  Work is busier, people are ordering bracelets like crazy, lots of visitors, & lots of travel. 

I'm still amazed at how many people are viewing my blog & keeping up with our story & after some people have pointed it out my blog is being spread through Pinterest.---> This was my goal & this makes me happy :)  I am still shocked though that people are so interested in our story.  I'm glad that we are getting peoples attention as that is what ALS lacks is attention.  Too many people don't know what it is. SO I have a few updates & a little rant for y'all today.  :)  And another promise (yes again;) to try to blog more frequently.  :D And I want to thank each and every one of you who follow this & share it.  That's what we are trying to do is constantly bring awareness & I feel like Steve & I have the best army of support behind us!!

Let's start with updates:
1. Steve & I have been keeping busy---and we are so blessed to have so many people drop in on us daily.  Visitors always brighten our days :)  Thank you to everyone who has brought food, stopped to visit, came from out of town, let us crash at your house so we can visit, etc.  We appreciate every single effort you all put forth to keep us uplifted.

2. A wonderful amazing family who has their own experience of just how brutal ALS can be has donated us some extremely helpful equipment to help Steve with his fight.  This is the amazing thing of this disease----it keeps bringing some of the most amazing, supportive, & loving people into my life.  Steve & I are so blessed by the Burstein family for this & we are both so grateful for the extra tools to help Steve with his fight!
3.  Steve finally got to meet my childhood best friend, Cori.  For most that know me know Cori & I grew up being attached at the hip from 9th grade-seniors in college-to even now I may not see her all the time but nothing has changed.  Cori was to be my matron of honor in my wedding but the week of my wedding she was placed on bed rest---we've since tried to visit several times & somehow something always got in the way of making it to Tennessee.  Finally June 8-10 we were able to go spend some time with Cori, and let Steve hear some of our young stories!!  It was so good to see Cori as she helps refresh me with lots of positive energy & it was good to finally meet my little niece Alaina.
4. We got to spend some quality time with my family June 20-24.  I feel like we never get to see them enough but the time spent was amazing!  We of course kept Steve busy & wore him out a little, but my family loves him dearly & were able to help pump him up & help restore some of his positive energy---and mine!  It's always a wonderful thing to see my family & it's unlike any therapy/yoga/relaxation I could do---my family refuels me better than any of that.  I am blessed with some truly amazing family that supports me from afar & I am so grateful!!

5. A friend of Steve's Christopher Bayer made us some decals for your car---we have some to give away to those interested in helping spread the word.  We will see how quickly these go & then we will order some to possibly sale.  For now we want to give them as a thank you to those who help support & spread awareness---but that may change depending upon how quickly we run out & how much they end up costing to send to everyone. 

Few reminders:
---the page is updated frequently keep checking back for updates :) & please continue to spread the word, share it on facebook, twitter, pinterest, email, etc. 
---There are several AMAZING people in our lives that are working on fundraisers currently & we will be adding a current fundraiser page to the website to keep people posted in ways everyone can participate. 

With that----I wanted to write a quick paragraph on something I've been thinking about:

Yes I am about to stand on a soapbox and yes this is something I CONSTANTLY go on & on about---I know I am a broken record but this is a little bit different of a twist on this.  Again I'm going to talk about positivity & gratefulness.  Steve & I have been so blessed with being surrounded by some of the most uplifting & positive people around & for that I want to be sure I express my gratitude.  Without each and everyone of you this would be a lot harder of a battle for us.  I want to stress the importance of maintaining a positive attitude especially when you are around Steve.  Steve has been doing an INCREDIBLE job of trying to remain positive & keep strong while he fights this.  He has bad days of course where it's extremely hard to stay positive, but it's so important that instead of jumping on the negative train to try to build him back up.  Negativity is so damaging to people and especially to Steve.  Days where Steve is focused on the negative he feels terrible, low energy, his muscle spasm increase etc.  Whenever he is positive & upbeat---he has more energy, less twitching, less headaches/nausea, etc.  It's easy to feel negatively about ALS as yes it is an AWFUL terrible disease, but it is my plea that if you are around Steve that instead of focusing on the negative that you focus on the positive.  I am very annoying optimistic, but Steve admits (not talking for him---this is directly from him) that days whenever he is feeling low he needs the optimism, even if it is annoying initially to hear.  He has said several times that if it wasn't for certain people remaining positive around him---he would have lost it by now... I know I am hovering about what I will allow Steve to eat & what I will allow him to do, but it's for a reason--he is my number 1 priority & I want to keep Steve uplifted & positive so he can continue to live his life with happiness & joy.  Thank you to everyone that supports us & to all those who are so understanding of my rants & pleas!  It means so much to have such amazing support & understanding from so many that truly love us!!

I will be often this week as our rally of supporters, Steve, & I are working on some things in the next few weeks & will be updating y'all often.

Thanks again for all the love, prayers, support, & spreading awareness.  Keep it coming.

Lots of love <3