Tuesday, February 28, 2012

Inspire others to motivate themselves

Sometimes all you need is someone to remind you that you are capable, you are good enough, & you are a strong person.  It's so easy to get down on yourself, especially when you are going through something tough in life.  With a diagnosis of ALS, it's almost expected for this to happen, but it didn't just happen to Steve it happened to me too. 

 Being a therapist, I have an understanding that I can't fully help others until I actually help myself.  Since Steve's diagnosis I've been doing things to help my mind to be calmed & my spirit to be filled so I'm able to keep him uplifted.  Along with some amazing friends & family who listen to me pretty much ANYTIME I need to talk (especially my mom--she will ALWAYS answer her phone if I'm calling), I've also had some others reach out to help.  Had a few doctors I work with reach out to offer a place for me to go if I have any questions medically about what we will face.  I had an old professor (thank you Dr. Slattery) mail me some CD's to help aid in meditation & relaxation (which have been wonderful). Also, had an old friend, Bobby reach out & offer to help in any way he could. (He's an experienced Life Coach, and is writing a book on how to focus your energy in a positive way & not get bogged down with the negative, if you're ever in need of some extra inspiration his email is: inspireme@goinggreenorg.com) I've had some very helpful phone chats with him getting some tips on how to focus my thinking to have peace of mind. Church has also been a huge help for both Steve & I, it's amazing the peace I feel walking into our church or even watching it online (which may I add is the best thing ever, if Steve doesn't feel as motivated to get up & moving we can watch online---genius! www.northpointonline.tv)  And all of you that follow me on here & send me helpful emails!  AMAZING the information I've received from y'all...Thank you thank you!

I don't know if it's the act of people reaching out or the activities that uplift me more, but either way it has all helped immensely! 

So, as I literally mention in every blog, Steve has good days with bad days.  One thing I noticed is that Steve needs reminded that he is an amazing, strong person, & that he is capable of fighting this. It's easy when diagnosed with a debilitating disease to often times feel defeated by the disease, and feel like giving up, but I (along with others) will never give up on Steve, and won't allow him to give up on himself.  After seeing his face & watching how his actions changed after I reminded him last night that he IS a strong person & he CAN beat this. I reminded him of the incredible future we have & how he can't give up on that, and suddenly he knew again that he IS strong enough.

This leads to me to this---MORE people need to hear this.  You never know what someone is going through day to day.  You may notice a change in behavior, you don't see them as much, maybe they are distant...whatever the case may be---that person may need you to reach out to them.  Ask them if there is anything you can do to help, and remind them they are Strong & they ARE important to you.  All they may need to hear is, "I know you are going through a lot, I want you to know I think you are an incredible person, & if you need me, I'm here."  So I'd like to encourage everyone please if you see someone you feel needs uplifted, reach out to them!  One kind word could make the difference. :)  If more people showed support to one another the world would be a better place..but...that's a whole other blog! ;)

Thanks again for everything!  & Lots of Love! <3


Monday, February 27, 2012


I wanted to write a quick blog sharing an uplifting story.  I've said this several times, that with Steve if he's in a positive mood then he does better physically.  Steve & I (finally) went to get our tattoos, this is something we've talked about a few times & it meant a lot for us to do them.  The experience was an amazing one, and it's inspired this blog :)

In life you should always be thankful for experiences, whatever they may be.  Experiences happen to teach us a lesson, help us through something, bring enjoyment, etc.  Experiences shouldn't be looked over, they should be celebrated & remembered. :)

So about the tattoos & experience:

Steve & I had a conversation at the beach about how we both have heard the saying, "If you see a feather it means someone who has left you is there with you."  So Steve has said several times to me, "When I leave look for feathers, and it will be me here with you."  <3 So naturally we decided to get feathers.   The experience itself was an incredible one!  Other than meeting an amazing person Mikey Webb at memorial tattoo, Steve realized that he has more strength in him than he gave himself credit.  While I made faces & would grimace here & there, Steve didn't flinch!  He even got nicknamed woodpecker lips.  Not only was it a great bonding experience for Steve & I, a way for us to share our love, it also restored some faith back into Steve, to help him realize he is strong.  I know we all tell him everyday but now he has a permanent reminder he can look at everyday to remember the experience. :)

ALSO!  My brother & sister in law have been trying to add a place for us to accept donations on our facebook page, as SEVERAL of you have asked for a way to donate.  First of all let me thank you for your desire to help it is appreciated more than I could probably ever put in words.  Second of all, we are working on it and have hit some road blocks along the way.  If anyone has any suggestions please feel free to pass them along.

I also wanted to let you know Steve & I appreciate every single bit of feedback we have received.  I've been overwhelmed with the response, so if I don't respond to you right away please know I got your message and appreciate it so much! All the information, support, prayers, & love mean the world to us! <3 Thank you!

If you have facebook make sure you like the HOPEforSteve page, we put updates there also on how Steve is & will keep y'all posted on when we get the donations button running properly!

God bless & lots of love until next time!! <3

Steve & I's tattoos:

Monday, February 20, 2012

Update on Steve's condtion

A lot of you have been asking me for an update on how Steve is doing with his fight with ALS.  I got his permission to write a very raw & honest post updating y'all on his health.  Initially the symptoms exhibited in his right hand, which eventually worsened, and spread to his left hand.  This added with him having loss of balance and other general weakness is what lead to his diagnosis.  Might sound weird, but we are truly blessed the ALS has started in his hands (there are several different types of ALS one can have, and the one that typically spreads the slowest begins in your hands.)

As things have slowly but eventually gotten worse, he has gotten more weak and tired (and had several rough falls) so we decided it was time for him to stop working, and follow through with the application process for disability.  This is a nightmare in itself...He got denied for short term disability AND put on a 6 month waiting period for disability & Medicare.  Since staying home he has gained some of his strength back, mainly because he doesn't have to spend the hour + that it took him to get ready for work.  Steve's unable to safely shower himself, we got a shower bench, however it still takes him a lot of energy so it is easy for me to bathe him.  We also got a raised toilet seat so it's easier for him to use the restroom, as well as a portable bidet as he has no interest in me wiping for him.  Steve now needs help to cut his food up, he is able to feed himself slowly & with some frustration, but is able to still do it.  Thankfully he is still able to walk, and pray for that to continue! Although sometimes needing asisstance, he is able to walk slowly on his own. Also, he still has a strong voice, although it is getting slower he is thankfully still able to talk and communicate well.  Steve's breathing has stayed pretty consistent, it has only gotten slightly worse.  Steve is no longer able to button his shirt (we leave them buttoned), zip his pants (now has velcro),difficulty standing up without help, unable to get a bottle top off, open a coke, squeeze mustard out of a container, or put deoderant on.  All things we take for granted.  One definite positive is that Steve's weight has stayed the same.  This is the most important thing when battling ALS, losing any weight increases the progression of the disease.  Also, if Steve loses ANY weight he will need a permanent feeding tube.

Each day is different for Steve, he could wake up with more energy walking a little better than the day before, and somedays he wakes up so discouraged that he feels almost like he can't walk at all.  It is important day by day for Steve to remain positive, as we have both noticed (like all people) when he has a good day mentally he also typically has a good day physcially.  Steve has a lot of things he does daily to help prevent the symptoms from worsening as much as possible.  He takes SEVERAL different vitamins (some pills and some drinks) daily.  If anyone is interested in a list contact me & I can share what has seemed to help.  We aslo put gloves on him each night with popsicle sticks in them to keep his hands straight, sleep on an electric blanket, and rub melted cocunut oil on his muscles.  Steve also has some stretching and breathing exercises he does through out the day.  We are very blessed to have his family & some very close friends that live close & are able to come check on him often.  It is helpful if someone comes to see him daily, to help raise his spirits, help with anything he may need, help him with lunch, play with the dogs, etc.  Unfortinately I still have to work (now even more than ever with the wait for disability to kick in) so I am unable to stay home with him.  If you ever wanted to know the main way to reach out & help Steve, I would suggest a visit during the week if you can.  I'm so thankful for all those whom are able to come visit. 

This is just some insight for those who were asking for an update.  Like I said every prayer, phone call, text, email, facebook post, visit, surprise lunch, etc helps.  We appreaciate all that everyone has done for us, and ask for continue prayer for strength & peace. 

Lots of Love!

Sunday, February 19, 2012

Say Yes to the Dress Atlanta

So as the show finally aired Friday night, I wanted to write a quick blog about it :)  I'm going to include the original blog I wrote the day after we filmed & also share my thoughts after watching the show. :)  If you didn't get to catch the show, they put full episodes online, and they also show repeats (next Friday 8PM).

 Here is the blog that was written back in September:
"Yesterday my mom (Donna), Steve's mom (Phyllis), Steve's sister
(Rachelle), Kylie, Candice, & I all went to Bridals by Lori to start
our filming.  We were all full of nerves, high emotions, & excitement,
and really had no idea what to expect.  As we started the filming the
nerves started to go away and we started to have fun! :)  I was pretty
excited to have Robin as my bridal consultant.  When you see someone
on TV, it's hard to tell how they truly are as a person because you
may think most of it is staged.  However, Robin is as sweet & caring
as she appears on TV.  She comes in being a big ball of energy & truly
cared about our story & wanted this experience to be amazing.  All the
producers, camera crew, & directors of say yes were also amazing.
They were warm, caring, & sensitive to the story.  They truly were
touched & wanted to share some inspiration with the world!  They
really made sure they got all the details about Stephen & how amazing
of a person he is.
As we started the dress hunt, I was very specific that I have a strict
budget.  Robin was amazing & she & I began looking at the off rack
dresses, which are the dresses that are 1/2 off the total price.  She
truly listened to me & helped pull dresses that I described that I
would want.  I tried on 1 dress that I wasn't feeling & the next one
was one that I really liked, but I didn't feel 100% about.  We decided
to walk out & do the runway because I did like it...I was so excited
about that part!  As I'm on the runway & we are talking about the
dress, Lori came on the runway to introduce herself.  I was equally
surprised how truly caring & sweet she was in person.  Because it was
obvious I wasn't totally over the top about this dress, Robin & Lori
decided to have me try on another dress.  Now this dress I LOVED!
They brought it in, & I immediately am excited.  I try it on & Robin,
Lori, & I all agree that this could be the dress.  I'm even more
excited this time to go show everyone on the runway.  As I came out
"the moms" (mine & Steve's mom) were saying absolutely not & everyone
else wasn't all that impressed.  I was devastated, but Lori & Robin
quickly came to my defense & we all tried to find out what their
dissatisfaction was.  Once it was determined it was an issue with the
dress needing altered, & the team showed them it could be fix everyone
was back on my side! :)
At this time, I was thinking I'm about to say yes to the dress & was
overwhelmed with excitement.  They decided to "Jack me up" (which for
those who don't know is when they accessorize you).  After being
jacked up & all of us being wowed by the complete look, we then looked
at the price.  UH-Oh...it's not in my price range.  Robin & I weren't
necessarily looking at the prices & it was 4,800 & even with the 50%
off it's still out of my price range.  At this point I am
disappointed.  However, this only lasts for a minute (literally)!
Lori, then asks me, "Hope do you love the dress?"  & I say, "...well
yes..."  Not thinking anything of it due to the budget, and Lori then
quickly responds, "Well I am here to give you Hope, & I'm going to
give you all of this (the dress & accessories)."  I, almost fainting,
am just overwhelmed with emotions & can only hug Lori & Robin & my
crew at this point.  I had no words, I was beyond shocked!  As we all
celebrated, I looked around & realized everyone in the room was crying
(this is including camera crew, producers, directors, consultants,
friends, & family).  It was truly an amazing & touching experience!
Lori has one of the biggest hearts she didn't flinch to give me about
$6,000 dollars worth of merchandise just because of the kindness in
her heart!  It was one of the sweetest gestures & with this experience
& how wonderful everyone surrounding us has been in reminds me that
there are still a lot of great people left in the world!
So after all was said & done with filming me finding my dress, they
decided it would be even more special to film the wedding.  Because
the story is Steve & I celebrating our love together no matter what is
thrown at us.  Because they want to get the message out, that it is
important to continue to live your life the way you dreamed it even
with adversity thrown at you, filming the wedding makes perfect sense.
I am so excited to see my loves face as I walk down the aisle.  I
can't wait to marry him & celebrate our love with our closest friends
& family!"

So here are my thoughts after watching the show:
I'm just as touched by the sweetness that Robin & Lori showed me after watching the show as I am the day it happened.  I can't put into words how much this whole experience has uplifted Steve & I.  It's amazing all the positive response we have gotten, and all the support.  They edited the show & made it fantastic!  I was so pleased as was Steve.  We had some amazing friends over to watch the episode, and again there wasn't a dry eye in the house. 

I would recommend Bridals by Lori to anyone that needs a wedding dress & although Robin is my favorite :) the entire staff there are sweet amazing people.  It was truly one of the most amazing experiences and I'm so glad we did it. 

In case you missed it:
Steve & I chatted with Mike Clark with Pittsburgh Channel 4 News
Where the full episode will be shown for Bridals By Lori
Our Amazing Wedding Video by Jeff Kaplan & Taylor Graves

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! :)