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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!
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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
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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!
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Exciting news! A couple of things including a surprise dream honeymoon!!!!

Hi all! :)  Some really exciting updates I wanted to share with everyone. :)


The first thing is, I just got an email from Erica stating that she sent out a mass message to some people about chipping in towards a "dream honeymoon" & that she booked Steve & I tickets to a 6 day trip to Our Dream Honeymoon in Belize!!  I almost cried when I read her email at work, and the proceeded to jump up & down & call Steve to tell him the news.  March 29-April 4th Steve & I will be doing some SERIOUS relaxing on our own little Island.  Check out the place, it looks amazing, and I will be sure to document it well & will blog about it when we return! I know I've it 10000 times that we are so blessed to have some really incredible people in our lives, but seriously doesn't this just prove it!  I mean hello!!!!! I am so thankful I'm almost speechless (will never actually happen;). From the bottom of our hearts thank you!  Thanks everyone who was involved in this amazing surprise!! For now that's all I am able to say mainly cause I'm so excited & still shocked that I am literally at a loss for words!!

Not to long after that trip, Steve & I will 90% be headed to PA to visit some family also, so YAY! :)


Another thing, Rita (Lasche Creations) was so sweet to submit our story to Occasions Online Magazine.  This morning I got an email that they had our article done.  Want to read, click me :) I'm so grateful for everyone helping share our story, which spreads awareness for ALS. 

So let's talk about Say Yes to the Dress.  I am about 80% sure that our episode will show 2-24-2012.  They said things are subject to change of course, but that's the date they said "tentatively" we will be on. :)

That's all for now, but that was a lot of excitement for one blog ;)  LOTS of LOVE! <3
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choices

This is probably one of those blogs that might be a ramble because I have so much passion involving this topic! That's choices. Ironically enough this has been on my mind to write something for weeks & Andy Stanely at church today spoke about it. Growing up you are taught there are consequences for your choices and if you're lucky you learn, "If I do something I shouldn't do a negative consequence will occur," VS. "If I do something I shouldn't do someone will hopefully bail me out or I will be able to somehow talk myself out of it OR even worse I will find someone else to put the blame on." I don't know if anyone else has noticed this or not, but not a lot of people care much about the consequences of their choices anymore.  Assuming people know by now, I mean it's common sense, what is a wise/good choice & what is a poor/negative choice.  And because people know this you would assume they would want to make the wise/good choice, right? It seems more and more are forgetting that when they make bad choices, bad things happen. 

You drink too much, you get hungover, or maybe in a fight with someone, or even arrested.  Sometimes you drink too much and you develop a habit, which can turn into alcoholism.  You eat that extra desert you gain weight, feel bad, & it affects your health.  You chose to sleep in instead of waking up to eat breakfast, or waking up to workout, or waking up to get to work on time.  You stay up late because you're having fun, and the next day you're tired & good for nothing. 

We've all made these poor decisions, so please don't hear me standing on my soap box pretending to be perfect. 

So with these choices after you face the consequences some people decide to try to make better choices, and some just keep going with the poor choices, because they don't have the (I don't know the correct word here so I'm going to use several) will power, courage, strength, understanding, willingness, or common sense to think about changing their choices. 

I see this everyday, whether it's someone I know or a complete stranger. 

1. An alcoholic patient comes in and states, "This is my 3rd time through treatment, I've had multiple seizures due to alcohol, I have cirrhosis of the liver, a bleeding ulcer, and high blood pressure."  You think someone like this can come in & realize they are killing themselves & they need to stop drinking (which without argument is a much harder decision for them to make), but they get dismissed with a strong support system and leave and go home immediately and get drunk, and that is their CHOICE. 
2. You are angry and instead of taking the time to chose to calm down & handle the situation in a way that will make you proud, you yell at your loved ones, kick your dog, throw something & break it, punch a wall & break your hand, etc...  All choices that are counterproductive.  What does any of these reactions to anger help? However, over & over again when you are angry you CHOOSE to take it out in a negative way.
3. You know there is something you NEED to change.  Maybe it's a habit, maybe it's a debt, maybe it's the way you treat others, or the way you treat yourself, maybe it's to stop being so negative about everything, maybe it's needing to take better care of yourself (working out or eating habits or no more smoking!!), or maybe even just as simple as no swearing, etc.  This is something you KNOW you need to work on, however knowing you need to do something about it & CHOOSING to do something about it are 2 different things. 

^I think I've made my point.  So with that I rant, I rant that what is it going to take for people to wise up and change the choices they make.  Does it take rock bottom for everyone?  Does it take them pushing the people closest to them away?  Does it take someone walking out the door & leaving forever?  Does it take them hurting someones feelings?  What does it take?  And more importantly knowing that you have NO control over OTHER people's choices, only your own.  You may be watching someone you love make poor choices, and feel hopeless and or responsible; but you must remember it's NOT your responsibility.  I mentioned earlier if you're lucky you learned early on that YOU must deal with the consequences of YOUR choices.  So, even though you want to save that person from the negative consequences, that is not your responsibility. 

It's a gift that we have the free will to even make choices.  It's a privilege that some people have the means to make some other choices.  Which is why it's so important for people to take control of their decisions.  "You cannot manage your life if you do not manage yourself.  You cannot manage yourself if you do not manage your choices. Manage your choices, and you will manage your life." Author unknown. 

With all this said, I've made it clear I'm striving to make better choices.  Each day is a battle to follow through (see new years resolutions for specifics) with everything, but if at the end of the day I can go to bed feeling good about my progress and my choices, then I feel I'm successful.  So what will you chose in your life?  Are you satisfied with your current choices, or does something need to change?

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New Years Resolution

Hope everyone had an amazing Christmas!  Here it was fantastic!  Steve & my Christmas started Thursday!  We are spoiled ;) & spent Thursday with Steve's family.  Kinda cool we got to see them & still see my family, I like how that worked out!  Then Steve & I went to PA to visit my family (and for Steve to meet those family members that didn't make the wedding).  We were there Fri-Mon (never seems long enough).  It's of course always amazing to see my family, but it was even more special to be able to share memories & experiences with Steve!  He now got to see the Eckel family Christmas and the big hectic experience that it is.  He also ate lots of firsts (which surprised me): Wedding Soup, Perogi, Permanti Brothers, & Pitzels.  Some of which I didn't realize southerners hadn't heard of.  All in all it was amazing!

Now back to reality & preparing for New Years!  I always love New Years eve, I always remember it being a fun & exciting time.  This year we are having people over, which means I have extra motivation to make my house spotless! YAY :)

But another reason I love love New Years, is I like making resolutions.  I like setting goals to accomplish that year.  This year since I'm blogging, I thought I'd share for the extra motivation to stay on task with my resolutions!  In no particular order:
--> Finally get house organized *including guest bedrooms, completely unpacking all my stuff , & putting up all of our photos!
--> After spending 2 years at my current job learning a TON, I think it's time I find something else that will lead me to new experiences rather than staying in my comfort zone. 
-->This is a big one and I've commented on this often, and it's not reacting to negativity.  I need to remember that I can't control others behavior I can only control my reactions.  I don't want to be such a reactor anymore, as I find it often brings me down.  I'm mostly a positive, happy, & calm person, but the moment I allow others anger or negative comments affect me I lose all of that. 
--> The very big need to detox and get back to having a healthy lifestyle.  This includes working out & yoga/mediation.  No more candy for breakfast & chips & french fries!  I used to be very aware of what I was putting in my body, and due to some stress & busy lifestyle I have lost it.  I know getting back on track will help me feel better & have more energy!
-->Read/study/research more.  When I was in school I was constantly filling my brain with lots of good information & I know if I don't continue I will continue to go down my spacey path!
-->Last but def. not least, a sorta personal confession, and very important one---learning to better finance my money!  Save more-spend less! 

*It's important when making resolutions to keep them realistic, but also to challenge yourself to improve.  I tried to do just that, but know that I have made some big goals.  However, knowing that each of these will increase the value of my life---I must do them.  I will keep you posted on how I am doing, but please if you follow this feel free to help keep me accountable.  Check in on me, call me out if you see me eating sweet tarts for breakfast, yell at me if I want to go shopping, etc.  Also, I encourage you to evaluate things that you can improve in your life & set your own resolutions! :)
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