Friday, December 7, 2012

with growth comes struggle & with struggle comes growth

I've think I've mentioned this before but I have a trait about me that is constantly wanting to do better, be better, act better, feel better, etc. I've had a fascination with this practically since I was born, trying to always help everyone, make a difference, learn more, make more friends, do more things, eat better, exercise better, etc.  Now often times I battle with if this is a good or bad trait, and I have come to learn that it can be both depending on how I manage it.

With growth I think people often forget comes struggle.  You either grow because of a struggle you are faced with unexpectedly or you know you want to grow in a certain area & then take the struggle that often comes with change.  A lot of it is a mental thing & once you overcome the mental struggle with the change & have acceptance of this change you have a feeling of success.

Since returning from our trip I have been having one major struggle & I wanted to share the story & hopeful progress with you all.

There is nothing in the world I would rather do than to be home to take care of Steve.  Most people unless you are in the situation don't know fully what goes into being a caregiver of an ALS patient.  A person with ALS is unable to do most everything we take for granted every day.  Can't get out of bed, can't dress self, bathe self, get a drink, take a drink alone, prepare food, shop for food, cook food, feed self, can't scratch the annoying itch, go to the bathroom alone, play on computer, talk on phone, type, etc.  I'm not saying all this to complain or even to bring anyone down.  I am painting the picture of why it is important for me to be home with Steve.  From the just needing a hug, the roll my sleeves up, the blow my nose, to the I need to stretch I am honored to be doing this for Steve.  Whenever I was working I struggled with the guilt & sadness of knowing my husband was at home, needing me & I was out helping other people (being a counselor) & in my population I was working with probably 85% of them didn't care that I was there.  The money didn't make up for the travel & the time away from Steve.  I know I am where I belong, but yet I struggle now with not having a job.  I feel the quilt of not contributing to our finances hardly at all----that I sit and worry about the bills we have, debt we have gotten, & the fact that Steve & I still want to live our lives.  Doing stuff out of the house & especially the fun stuff typically costs some money.  Whether the gas to take the trip to the mountains, or the money to go to the aquarium, etc.  This then turns into me becoming neurotic Hope.  I have to try to be super wife, super caregiver, & come up with any means---selling old items we don't use (which I'm not complaining about because I think this sort of declutter letting going process is important to me as well as they money what little it may be we can make), making candles to sell, tshirts, fundraisers, & even the idea of becoming gypsie craft ALS awareness people where we travel & set up a booth to sell crafts & ALS stuff at craft shows, etc (Thanks to Chelsea for this extra motivation in this:).  Learning to balance this has been my recent struggle----which I haven't completely done so yet.  Don't get me wrong, I am used to working for my money & I continue to strive to be able to do so while staying home & taking care of my husband but it's the struggle of fully being there for Steve (which is why I left my job to begin with) vs. becoming unproductively productive.

*Quick side note on the unproductively productive---this is sort of where I make myself busy doing things that aren't the most productive but to make myself feel like I am being productive.  Since I've become aware of this I've been aiming more towards actual productive activities to fill my day so I actually feel the reward for doing the act.  That's how it should be.

I am not writing this to complain I guess I'm writing this to share some perspective.  Although, the above is a difficult struggle to me---it is nothing compared to the struggle Steve goes through everyday.  I can't even complain or even think of complaining as I watch Steve.  Just like most people I still get caught up in the easy complaint of I'm tired---I'm hungry---I have a headache---man I wish I could do this or that...etc. I am still striving to have less complaints daily.  For those that knew me before Steve while I was annoyingly optimistic still back then I would complain about stupid stupid things.  I have seen progress which encourages me to continue to strive towards a life of little or no complaints.

I am reminded daily that although sometimes I may have my little health "issues" I am so grateful for my health & will never take it for granted again.  Since Steve's diagnoses we've both become much more aware of what we put in our bodies.  We've gotten a lot more dedicated to it since our trip & I'm so proud of Steve for taking on these changes & embracing them.  In the past I think month (or close to it) he has had only 3 coca cola's.  For those that know Steve---ALS made it difficult for him to drink a lot of fluids & cokes were the easiest for him to drink.  He then proceeded to drink close to 5 a day.  This obviously is not healthy & hurt Steve in multiple ways; main one urinary infections.  Since quitting coke's Steve has had none of the issues that he had due to them.  It's a great thing & fortunately the changes that are still remaining from the stem cell he is still able to drink a lot more fluids & we've also found a lot of healthier alternatives for him.  Our health is such a vital part to our lives & it's so easy for us to forget it & not pay attention to what we are putting in our bodies, how much sleep we get, or any care for ourselves at all.  I'm begging if you have your health count your blessings; if you are noticing some health decline---please please do what you can to try to reverse these things naturally.

I know I always do the generic thank you to everyone that supports us but that's because honestly I cannot begin to thank everyone as we are blessed with so much support.  I know there are times where we have needs but I also know that we have more support than a lot of other people out there & for that I have no adequate words.  All of you that support us with prayer, good thoughts, spending time with us, visits, food, finances, friendly texts/emails/messages, & never ending kind gestures----you are all amazing.  Even people we don't know other than through the Internet or maybe have only met in passing---it's incredible how much I am reminded in the great great great people there are in the world.

I thank you all for the continued strength & love as we all continue to grow in this crazy journey together.


Thursday, November 29, 2012

Not all who wander are lost

24 days, 6,762 miles, 14 states, 1,023 photos, 1 brake change, 1 oil change, & 36 tanks of gas later we return from an amazing adventure of a life time road trip & I've been itching to blog about it.  After being on the road full of excitement & energy each day, the minute we returned both Steve & I got sick. Guess our bodies were used to going going going & once we stopped they figured time for a freak out!  Now that we are on the path of recovery I can finally blog all about the trip.

This trip was not just fun & cool cause we got to see a lot of things it also taught Steve & me a lot about each other & ourselves.  It was a very good trip for us both & I personally have a whole new level of inspiration & motivation for life & the things I want to do with it.

We had a rough lay out of the route we would take before the trip but like most things, we changed it a little along the way.  So we went---Atlanta---Biloxi, MS---New Orleans, LA---Austin, TX----Albuquerque NM---Wigwam Tepee hotel---Grand Canyon---Vegas----Bakersfield, CA---Big Sur, CA---San Luis Opisbo, CA----San Fransisco, CA----Mendocino, CA (Redwood Forest)----Yosemite National Park----Lake Tahoe----Salt Lake City---Vail, CO---Nashville, TN.   These were our main stopping points, there were of course lots of stops & stays along the way.

Before leaving for the trip we painted the van to increase awareness & make sure people knew just why this trip was so important to us.  Here are some photos of the van. :)

So let's talk favorites & then stand out stories.

Favorite foods:
New Orleans--- for sure some of our favorite, the gumbo & baguettes were incredible. Also some of the yummiest crawfish I've ever had.
Austin---they make eating out of trailers classy.  Almost all the good food spots were in trailers along the side of the road & in parking lots.  Torchy's tacos & the crepes mille were amazing.
New Mexico---holy wow! Everything is covered in green chili & amazing. Full of flavor & the perfect spice.

Favorite views:

 Big Sur---California highway 1 & Bixby Bridge.  This place is like something out of a dream.  The prettiest place I've ever seen.  We stumbled across this gem on the perfect day as it was 80 degrees & sunny!  No matter which vista point you stopped at to see the views it was breathtaking!  Steve & I  spent an entire day just stopping & taking pictures & taking it all in. 

Lake Tahoe: Unreal.  The drive around the lake is incredible with all the different views of the mountains & lake.  Also, the view from my friend Lisa & her boyfriends house at Tahoe is incredible---you just can't have a bad view there I don't think.  We will be visiting Tahoe again for sure in the summer!  

Redwoods: Talk about overwhelming. These trees are incredibly huge & so cool. We also got to drive through one---was sweet!  This was actually our motivation for this trip & so glad we experienced it! 

Favorite memories:
First of all the people we did get to visit along this trip & spend some time was great.  As well as the strangers we met along the way---but I'm going to go into that in a bit.  
  • In Albuquerque we got to see Steve's Aunt Mimi & cousins Sean & Elaine.  It was so much fun to get to spend some time with them & Elaine's & her boyfriend just happened to be home visiting the same time we took our trip, so it was perfect timing.  We def shared lots of laughs, got to explore Albuquerque, & ate lots of yummy food!  Aunt Mary even hooked us up with a great massage chair which not only came in handy on the trip, but is great to have around the house.  

  • My friend Lisa is lucky enough to call Tahoe home!  She helped give some great tips when planning the trip & opened her & her boyfriends home up to Steve & me without hesitation.  It was so good to get to spend some time with her as I haven't seen her in a few years.  She showed us around & taught us all about Tahoe.  She fed us & even sent us on our way with lots of goodies!  We will def be back to Tahoe visiting soon.  Somehow I didn't get any pictures of Lisa & me--- too much fun & too busy looking at the views, but here's their AMAZING view from their house. 

  • So, Steve's friends from high school work at Vail & they got us set up in this ridiculous suite in the Arrabelle in Vail.  Unreal.  So good to spend a few days hanging out with Casey & Colin & getting to see why they never moved back home. ;)  It's easy to see with how amazing Vail is, the people there are incredible, the sights are amazing, lots of good food, shopping, & always something to do.  The suite was a nice break from being on the road & staying in cheap hotels.  We recouped for the drive back home in Vail & def enjoyed every minute!  

  • Of course we had to make a pit stop in Nashville for a night to visit my best friend Cori & her husband Caleb & got to spend time with their sweet baby, Alaina.  Although a short visit, it's always good to see your best friend. :) 
Some other favorite memories in brief : Grand Canyon, sleeping in a tepee (Wigwam), every view of the mountains, all the sun sets, getting to walk on the beach, seeing so many different things each day, never being bored even on days we drove long hours, watching Steve's face light up each time he saw something cool (everyday) & then of course the blessings & lessons.

First of all EVEN getting to take this trip is a blessing itself, so that is important to mention.  Thanks to everyone that helped out to make this possible.  Few needed thank you's: Danny & Jen for watching our fur babies, my in laws for checking on the house, my neighbor Dave for helping out with the van, Erica for our hotel in Vegas, & Steve's mom for our night at the mineral spa in San Luis Opisbo & everyone that donated for gas money, chipped in for hotels, & prayed for us. 

The whole time on this trip we wanted to spread awareness; hence the van & it was a great blessing to us when people would approach us asking questions, would find us online, or even would offer random acts of kindness.  Just wanted to share a few of the stories we had happen.  In just about every state we had someone comment on them liking the van or asking more detail on ALS. I know that we touched a lot of peoples lives with this trip & our lives were touched by some very special few as well. 

In Austin we were sitting at a gas station & a guy came & knocked on my window.  Catching me off guard, he asked "Can we donate any other way than online."  I muttered out, "Sure you can give me money now."  Realizing that probably sounded rude I then reached back & pulled out a tshirt explaining the story he immediately gave us some cash & asked for a shirt.  

Also, in Austin the guy at the parking garage liked our van & let us park for free & bought a shirt.

Driving along through Texas we decided to stop and eat and the first real restaurant we saw (no more fast food please) & we spotted was a Chili's.  While eating, a sweet girl (Shylah's blog) approached us & explained she had seen the van & that she had Muscular Dystrophy.  Although ALS & Muscular Dystrophy are different they do share some similar struggles, and this girls strength while encouraging Steve to remain positive was incredible.  She was very sweet & it was a great reminder that everyone is battling their own battles, but with the right attitude you can overcome them.  She wrote a blog about her experience meeting us : .

In Arizona we took a quick pit stop at Denny's for breakfast.  We were sitting there eating our breakfast when the waitress came excitedly over to tell us, "That woman paid for your breakfast." Almost in tears  I walked to the woman hugging her & she then told me her experience with ALS & said that she will be praying for us.  Such a blessing to have the reminder of nice people out there & also to see how much the staff was blessed by this experience.  

While soaking up every minute at Big Sur we met a great couple who came & asked us about the van.  The couple was very sweet asking more details on Steve & me & how Steve was doing.  They both were very happy to see us traveling & offered to take a picture for us.  We ran into them a few times which was nice always seeing a smiling face each time.  Felt like seeing a long time friend again. :)  We've managed to stay in touch emailing back & forth sharing stories of our adventure & she also wrote a blog on our experience meeting:

Still enjoying California, driving on the 17 mile drive in Carmel (also incredibly beautiful).  We were stopped on one of the Pebble Beach vista points, when a couple approached us asking if that was our van.  Of course we can't deny the van :)  Turns out they were from Atlanta too :)  Small world right!  Immediately they found us online & have reached out to offer to be of any support we need & even bring dinner :)  Love small world stories.  

In Vail while wandering around the Vail Village we walked into a shop where the owner immediately started conversation with Steve & me.  He was very in tune with speaking with Steve & then asked if he could read a passage out of the book he was reading.  The man explained he was Buddhist & that he believed that no matter what religious belief you were of that he was to show kindness & caring to every person & that Steve could relate to this reading.  He then read the importance of staying positive, having a calm mind through meditation, & the importance of kindness.  He gave Steve a scroll of a saying, "Right from the moment of our birth we are under the care and kindness of our parents and then later on in our life when we are oppressed by sickness we are again dependent on the kindness of others.  Since at the beginning & end of our lives we are so dependent on kindness, how can it be that in the middle we neglect kindness towards others." -Dalai Lama. Steve was very touched by this & saw it as a reminder to stay positive through his fight.  

Every person we interacted with blessed us in some way, but I wanted to share some of the specific stories with you.  

So this trip was a voyage to really show others that if you want to do something badly enough, to do whatever you had to do---in order to do it, who knew we were teaching ourselves this lesson plus much more.  Along the trip Steve & I had to learn a lot of compromise.  We spend more time together than most couples do already due to our circumstances, but on the road there's no getting away from one another.  It was a very good growing experience for us to gain more tolerance, patience, & love.  We also grew together through each experience.  It's not until you get home & have time to reflect that you really can see what you got from something & I will say that this taught both Steve & me that although there are days where we will need to stay home & rest---we need to not get too comfortable with being "home bodies"  there's a huge world out there to explore & with each adventure we learn more about ourselves, one another, & the world.  It was amazing to see different cultures within our own culture.  See how different people interact, listen to them talk, & learn how each & every one of us while so different are capable of getting along.  

The street performers in New Orleans were talking about one love, the hippies we met in the redwoods taught us of peace & tolerance, the Indians in Arizona showed us the importance of embracing who you are, the Buddhist in Vail reminded us of the importance of having an open mind. Each person you come across has something to teach you & if you don't pay attention you could miss the opportunity.  

Being home for a week now (& finally recovering from post trip sickness) I am so inspired & motivated.  So many things I want to do with my life, so many things Steve & I want to do, & also motivated to get my butt in gear to make some money so we can do trips like this OFTEN.  Yes, often. We are motivated to have less & do more & we are willing to do whatever we have to do to assure we can travel as often as we can.  

Be looking out for some new projects in the next few weeks as I scramble to accomplish my inspirations.  

I could go on about this trip forever, as it was a life changing awesome trip, but instead I'm going to leave it at that.  Here are two links to the photos we took:

Lots of love! 

Tuesday, October 16, 2012

Some follow up.

So often when I blog I am blessed with a great amount of emails in response.  Sometimes I am able to respond & others I get overwhelmed & forget.  So I wanted to write a quick blog with some follow up on some of the questions I've been asked a lot.

For starters I'm glad I'm doing this because one of the main things is I want to share some of the things we've tried with Steve to help him.  It's so important when facing a disease with no cure or treatment to take matters into your own hands & find things that can help improve your quality of life---in all realms.  Our outlook on it has been if it won't make Steve worse we NEED to try it.  I also appreciate hearing from others things they have tried that have worked or not worked for them.  We are all in this together & if we remember that & start working together (which I will refrain from getting on my soap box about that) we could discover something on our own that is what all pALS need.  *For those outside of the ALS community pALS is people with w/ ALS, cALS is caregivers of ALS.*  

So I want to start with sharing more details on what we've tried with Steve, what we have seen helps, & what hasn't worked for him.  It's important to remember that with anything everyone is going to have a different response, so just because something hasn't worked for us doesn't mean it won't for you.  It's so important to try anything (within limits) that will help.  Steve & I & our families are big believers in natural remedies along with medicine.  Medicine is made for a reason but sometimes you can take care of certain things naturally, so we try both.  

So I'm going to list the things we've tried & then I will go into what has helped & what hasn't.  Let it be known out of all of these thankfully none of them made him worse to our knowledge.  A lot of times people only try things based on research, or scientific facts; which in most circumstances I can understand but when facing a terminal disease like ALS we try more than facts---we go through trial & error.  Honestly I will say this 100 times probably in this blog, but if it won't hurt Steve---we WILL try it.  

-Coconut oil, AAKG, NADA, NADH, GABA, Acetyl L-Carnitine, Magnesium Chloride, Astaxanthin, Milk Thistle, Zicam (any sign of a cold), Emergen-C (any side of a cold), Vitamin E, Potassium, Vitamin B12, Vitamin D,Mucinex, Baclofen, Zoloft, Wellbutrin, St. John's Wort, Tea with honey, Normast, neurolast cream, Cough assist, C pap, neck brace, physical therapy, Epsom salt, Boost, Protein shakes, anti-nausea medicine, cranberry juice. 

For starters Coconut Oil is amazing in every form!  We do pill form, melt it & rub on skin & melt & he will drink, & it's also an ingredient in neurolast the cream my in laws developed & yes I will go into further details about that as well because a lot of people have asked.  Coconut oil has so many articles written on it & specifically about ALS also, I will share a few for those interested. Health Impact---Coconut Oil  ALS forum & coconut oil  With Steve personally Coconut oil helps his throat a lot when he swallows it.  He will gargle it also which also shows some significant improvement.  When rubbing it on him it helps relax his muscles, since starting to use neurolast we don't use coconut oil alone anymore as we've seen more results from neurolast than coconut oil alone.  

While on that subject I will explain as it includes a lot of the things above that Steve takes orally as well.  & Yes he takes these ingredients orally & we use the cream, because we've seen improvement with these ingredients we use them as much as POSSIBLE.  I've mentioned this cream before (& please I'm not trying to sale you on any of this I am simply sharing what has helped Steve).  About 2 months after Steve's diagnoses Steve's mom & dad immediately started to reach out to ALS doctors, researchers, organizations, etc to find any cure/treatment/help.  Through several conversations they realized that there wasn't many options available but there were some promising things.  Steve's mother created a contact with a doctor in Florida who's daughter also has ALS.  Together they began to discover some of these vitamins & enzymes listed above showing great results.  We immediately started giving Steve these orally, however his mother didn't think that was enough.  After months of research & trial & error she developed neurolast cream.  I'm going to include the ingredients & what they do here so everyone can see if it's something that interests them:  Neurolast is a combination of enzymes, ketone bodies, amnnio acids,and medium chain triglycerdics. All of these ingredients have been studied and used for various motor neuron diseases with published success in improving fasculations, tremors, pain, mobility and in improving muscle tone.There is also significant evidence that we can stop nerve cells from dying by supplying them with an alterna
tive source of energy.
AAKG (arginine alpha ketoglutoric acid): This ingredient has been used extensively by body builders, strength experts and others to improve muscle tone and strength. These benefits have been widely researched and validated. GABBA (gamma-Aminobutyric acid): This ingredient has shown to break down Glutamate which accumalates at the junction between nerve and muscle which experts agree is one of the causes of nerve cell death. It plays a role in regulating neuronal excitability throughout the nervous system. In humans, GABA is also directly responsible for the regulation of muscle tone. Coconut Oil (medium chain trigleride): Coconut is broken down in the body as Ketones. These Ketones (KB) supply energy to nerve cells which is believed to slow the process of nerve cell death. MSM (Methyl-sufonyl-methane): MSM is a biological sulfur which is necessary for the synthesis of collagen, immunoglobulin and enzymes. This maintains cell membrane flexibilty which provides the body with raw materials needed to create new cell, to reparir and replace damage tissues and treat disorders such as arthritis, muscle pain as well as increasing circulation and promoting connective tissue health.

^For those of you that are like me & that's too much medical mumbo jumbo don't worry it is for me too for the most part, but all I can say is that comparing when we rub the cream on Steve vs when we don't there is a significant difference.  I've also become a little addicted to it as well for any aches & pains I get with helping lift & move Steve.  
What we do with Steve is rub it all over him at least once a day & then multiple times a day we rub it on his throat & chest as well as his arms & hands.  These are the areas that have bothered Steve the most & he reports that each time he has any discomfort & we rub the cream on it eases some of the discomfort/tightness/spasms.  

Like I said at this point we want things to not only help him last longer but also increase his quality of life.  

While on the subject of spasms, Steve is prescribed Baclofen which he takes 2-3 times daily & we also included potassium.  The Baclofen does work for the most part but he was having some cramping in the areas he experienced the most spasms & that's when we started adding potassium.  Since that he has had significant less spasms or cramps.  

Now the antidepressants.  Being a therapist I am much more on board with these than maybe most, but I also know that sometimes they make things worse instead of better.  I also know that ALS is the most devastating diagnoses one can ever get, so of course it's going to make you depressed.  While facing ANY battle let alone the biggest one probably ever it's important to try to have a positive mindset.  Your mind is VERY powerful.  For those that don't buy into that, talk to Steve about how different he feels on days he's feeling negative down or depressed vs days he is feeling positive or happy---& I don't mean how he feels emotionally I mean physically.  I encourage every person with ALS to experiment to find the right medication that helps.  Steve was taking zoloft alone initially but then he began to experience some anger spells (again totally normal & expected) so we put him on wellbutrin as well.  These medications did help him in the beginning a great deal.  However, as he continued to take them he started noticing he began to lose control of his emotions more even well after having somewhat peace (as much as you can) with the diagnoses.  With a lot of thought Steve recently stopped taking both his zoloft & wellbutrin.  The first day he felt sad and tearful but still reported he didn't want to take them as he truly felt like these were causing him to be more erratic.  By the third day Steve had his mostly happy disposition back & reported he felt more in control of his emotions and moods.  Like I said this has all been a trial & error process the whole time & it's important to really listen to your body with all of these.  I'm so proud of Steve for having the courage to try to stop taking these as it's a huge thing when facing this to stop taking a medication that is said to make you feel more happy.  It's been close to a month now that he hasn't taken an antidepressant & other than the typical moody period his extreme shifts in moods has stopped!  I would like to add that on some days if he felt a little sad I would give him a St John's Wart & reported that it would help a little.  So that is something that is always an option.  

Flem stinks!  For this we use cough medicine, mucinex, the cough assist, & suction machine.  We typically start each day with the cough assist & suction then give 1-2 mucinex a day.  This routine has helped Steve not have too much difficulty with flem.  

Nausea for us has been a recurring issue with Steve & from what I gather from doctors & other ALS caregivers is this can occur with the excess flem.  So our doctor prescribed Steve an anti nausea as PRN to take as he needs---def beats him getting sick. 

Cranberry juice---as I've recently learned a lot of pALS will experience problems with urinary infections we've begun including cranberry juice in his diet to help keep those at bay.  

In regards to Pain & discomfort most all ALS patients will experience pain or discomfort that none of us will truly be able to understand.  Steve is on pain medication but we also use a lot of other things to help ease this.  Physical therapy & stretching has shown him so much relief.  We also utilize the neurolast cream for the pain as well, other than our normal routine if he is experiencing any additional pain we will rub the cream wherever the pain is.  As recommended by our physical therapist we also use Kinesiology tape (the tape you saw all the olympians wear).  We will typically put 2 pieces on his back & shoulders which help a lot to reduce pain.  

ALS not only is the worst disease ever I think it might also be the most expensive, between gadgets, equipment, special drinks, medications, vitamins, etc.  So with that I have learned to search for these medications, vitamins, enzymes, etc online.  I've been able to find most of these on amazon for a portion of the cost that you would get in a health food store.  Any way to save money is always appreciated!  

I hope this helps & any other questions or suggestions are always welcomed! 

Wednesday, October 10, 2012

Let's take a road trip ;)

Okay so I wanted to share a little adventure Steve & I are planning with you all.

When Steve & I got married we discussed wanting to do something very special for our year anniversary because of our circumstances.  Steve's original idea was we go to Italy, well at this point in our life that's not possible for a multitude of reasons---main one being financial.  So with our anniversary coming & the fact that the whole month of September we didn't leave the house much more than maybe 4 days of the month; between Steve getting sick/saving money/preparing for stem cell we were cooped up in the house.  So much so that going to the grocery store was as exciting to me as dressing up & having a night on the town.  Thankfully Steve has been feeling a lot better & has had a lot more energy so we are able to get out & about now, but we need a trip.

We have both talked so often about wanting to go out west & because we were donated an amazing handicapped accessible van we have decided to make a road trip to California & back.  Yes you read that right.  & before you stop reading I really want to explain why this trip is so important to Steve & I.

Besides everything I mentioned above about wanting to take a trip on our anniversary & us having cabin fever there are several other things that motivate this trip.  For starters, our whole mission (for lack of better words) since Steve's been diagnosed is to remind people to live their lives to the fullest.  A long time ago, when I was about 7 my mom's second husband Chuck one day said to us, okay let's pack up & drive out west.  I don't remember much from him but I remember him saying, 'all my life I've wanted to make a trip out west, but have always let life get in the way.'  For some reason that of all things has always resonated with me.  If you have an opportunity take it---want to do something (within limits obviously)---do it.  That trip we took was my first memory of traveling & from what little I can remember from it that's when I sorta became obsessed with wanting to see everything outside of our small town Pennsylvania.  Take a cross country road trip out west has been on my bucket list forever & as it turns out it's on Steve's also.  So because we want to live by example we decided to make it happen.  We have the time now with me being home & with this van & the lots of loved ones we have scattered across the country we can do this on a budget.

We also plan to make this a little spread some amazing awareness road trip as well! We are going to be making it a point along this trip to spread awareness to any & everyone we come in contact with.  We have some tricks up our sleeve as to how---but you'll have to stay tuned for that. :)

I will be documenting the whole trip.  Going to do videos & photos.  For the sake of everyone who will be worried or just curious I will be updating where we are probably each day on our Hopeforsteve facebook page, so if y'all haven't liked us yet---may be time. ;)  I plan to compile all the video into a little Hope for Steve documentary after the trip. I will be blogging throughout but most of it will be a big long blog at the end.  I will keep a journal like I did when we went to Belize & took our Florida road trip.  It's nice on those days we are stuck in the house to look back at photos & videos & read the journals to reminisce.

So we have MOST of the trip mapped out but not all of it.  Main thing is we aren't wanting to put a set schedule on it.  For 2 reasons really---if we see something awesome along the drive I want to be able to stop & see it & also if Steve is feeling tired or not well we will make sure to allow time for him to get rest.  I'll let y'all know some of our for sure plans we have, but first I want to address all the worried on lookers.  For starters, Steve & I have been planning this for a month & a half & still have the rest of this month to continue to plan.  With the help of Steve's dad we have done a lot of maintenance on the van to assure it is in top condition for the trip.  I have road side assistance with my insurance, so if we happen to have any random car problems we can't figure out all I have to do is make a call.  I am already a walking pharmacist so if we need any medication we will have that---I also already started packing a hefty first aid kit.  Something else that will make everyone feel better is the amount of people we plan to meet up with. (total side note if you are in any of the areas I mention & Steve & I haven't talked to you---message me and after sassing me for not contacting you yet please tell me if you'll be around the month of November).  In all but 1 state we have someone to meet up/stay with which adds even more excitement to the trip!!   We plan to enjoy the trip to the fullest & explore as much as we can but we've also learned this year for Steve not to push himself.  When he needs rest---we rest.

So the plans which will continue to become more 'solid' are as follows.  For the most part we do have people we will be staying with & the remainder of the time we plan to 'camp' out in our van. :) We will have a few nights of getting a hotel but few & far between.  Remember this isn't just a road trip, this is time of our lives, new adventure, awareness bringing, wanderlust living, ON A BUDGET road trip.  So this is why we have been planning this out so much---to make it cheap :)  So far the route is (subject to change): Biloxi, New Orleans, Austin, Albuquerque, Grand Canyon, Drive all through Cali, Big Sur---coastal highway, Yosemite, Redwood, Tahoe, then head to Salt Lake, & the mother load of people to visit in Colorado Vail & Denver, gonna go through Kansas & hit up Chicago, through Kentucky & stop to see my Nashville bff, & back home.  To those this exhausts don't worry about me, I've always had a little gypsy in me so it doesn't sound exhausting intimidating anything negative---it just sounds amazing!!

With all that--any suggestions are always welcomed as well as anyone have anything handy that will make the trip more awesome we can borrow let us know.  For starters---#1 need futon mattress & uh well that's all I think we don't already have---BUT if you think there are some MUST have items we make sure we have---let me know!

I would also like to say a big thank you to everyone who encouraged us to go on with this idea & who support us in our good times & our bad.  Thanks for everyone reminding us that since we've been trying to encourage everyone to enjoy life that we need to as well!

Tuesday, October 9, 2012

Enough slacking

Hi all. I know I've been owing y'all an update---I've had the best intentions to blog many times but between Steve being sick/recovering/etc & him finally feeling like leaving the house I've been slacking.

So for starters a big thank you again to everyone that helped us rally & get stem cell---friends, family, & even strangers all rallied around us & really helped make this opportunity to come true.  We took Steve to an amazing doctor to get an incredible stem cell procedure.  People have a lot of skepticism with stem cell for multiple reasons.  There are a lot of people out there that are thriving on people's desperation & are complete scams but thanks to some very knowledgeable people we were able to determine that the doctor we found is legit.  Another reason people are hesitant is the fear of the unknown, it's not truly known with 100% why stem cell works, if it's going to work on everyone, etc.  The cost was $15,000 & yes that is a lot of money (which is why I continue to thank everyone who made it possible) however when put in this situation I would give anything, any penny/possession/etc to say we tried everything we could to help Steve fight this.  Seeing how much hope there is in stem cell that $15,000 wasn't going to stop us from trying everything we could to raise the money.  Thankfully we are blessed with amazing people in our life that truly understand the importance of trying everything we can.  I can't even begin to thank everyone individually because there were so many people who supported us.  The donations, prayers, warm thoughts, well wishes, spreading the word, helping us research, etc.  Without all of you it wouldn't be possible.  Also a special thanks to Steve's parents for helping financially with the trip to get the procedure done & coming with me to help take care of Steve afterwards.  I would have been a basket case without them & am so grateful they were able to be there with us.  I don't feel like I could explain the procedure anywhere near as well as the doctor, so for anyone interested in this please feel free to contact me, I will give you the doctors information for you all to call & see if it something suitable for you or your loved one. SO...the thing y'all have been waiting for, did it work?

For those that follow me on Facebook or twitter have seen my updates.  It is working!! :)  The doctor was upfront & open the entire time & told us that the results will be different in each person & gave us an idea of what we could expect, however Steve is going above those expectations.  4 hours after the procedure Steve was in some pain (of course) & said "Oh my God."  I immediately jump up to see what's wrong & he said, "I took the first deep breath I have been able to in over 6 months."  I immediately tear up & begin to thank God & spread word.  Steve has continued to see slow progress.  His breathing is still improving, he has some significant less choking, his voice is getting stronger, & since the pain has subsided we started physical therapy again & our amazing physical therapist even noted that his movement has increased some.  He is able to roll over in bed with a little more ease & is able to move a little more in his chair.  We are so thankful for these improvements & are extremely hopeful for more to come.  Thanks for all the prayers & I ask that we continue to pray for Steve to show more significant improvements & also for us to have continued guidance with what steps we should take next.

Steve & I sometimes feel like we can't be great friends, like we aren't even the best of people that deserve all this love but the amount of people that helped & donated was unbelievable & continues to overwhelm Steve & I with how quick everyone stepped up to support us.  To everyone that has never given up on us, never veered from supporting us, who understands our sometimes mood swings, who constantly is there standing behind us, supporting us, cheering us on, pumping us up---please know it is because of you that we are still so determined to fight this.  It's easy to get discouraged in life even without extreme trials & there will always be those people working against you, but because of all of you that have never left us we continue to go on----we truly thank you.  I know people say a lot that we are inspirational (which that is what we aim to do), but you all that rally around us are also.  Each of you that has stuck through us even when the times got really hard, you are the ones that inspire us to keep going.

Steve & I continue to grow as people through this & continue to learn new lessons.  Without a lot of the trials we have faced we wouldn't be half the people we are.

There have been so many other things I've wanted to blog about---but for now I will leave it at that update & share a few things coming up.

Few things coming up:
*Steve & my anniversary October 15th!  What a year it's been & I'm so grateful that we were able to take this journey together.  Will be updating with anniversary plans in the future :)
*The HOPEforSteve golf tournament  is on October 20th, even if you aren't a golfer there will still be activities for you!
*Steve's 30th bday pub crawl For Steve's birthday we decided to put together a pub crawl October 26th, the details are still being worked out but wanted to make the invite so people would save the date.  If I left anyone off the invite on facebook, forgive me, & please pass it along.
*The ALS guardian angels, whom have helped Steve & I a great deal are doing skydiving fundraising event the 27th.  I am actively fundraising for them as they've helped us so much, Steve's been having nightmares about me jumping so I may not jump, but still want to fundraise.  If you are interested in donating click here

Again, thanks for all the love & support.  Y'all/Yinz are amazing!! :)))

Monday, September 17, 2012

Night Ramble

There is something about blogging at night, usually I'm too tired but have so many thoughts in my head.  Always when I'm laying in bed or in the shower is when I think of something awesome or profound & 95% of the time I don't write it down & tonight since I'm a little hooked on the Falcon's game (again so happy football is back & Go Steelers;) I figured I'd write a blog---plus I'm overdue!

So this is my second week off work.  Last week I had all kinds of "big plans" in where I accomplished maybe 2 % because I ended up very sick.  Both Steve & I got colds, but mine turned into the usual miserable sinus infection.  Guess it happened perfect timing though since I was done with work I slept A LOT! Thankfully Steve is very patient with me when I'm sick & since he was a little under the weather he slept a lot more than usual also!  So now to my first REAL week out of work. 

With that starts the cooking mission.  When we initially decided I was going to leave my job we made the adult choice that we would be eating all meals at home with exception of special occasions to save money.  Little back story for you.  I grew up with the most amazing independent mother who hardly had time to cook for us.  She did such an amazing job raising us by herself & instilling valuable qualities in us---but (no offense momma;) cooking was not one of those.  So I of course through college was one of my few friends that was totally okay with eating oodles of noodles (ramen) or microwave mac & cheese.  This quality carried with me a little too long though.  So when I met Steve who was raised where his parents would cook most of their meals.  His mom cooked a lot (& I have a lot to live up to his mom can cook & so can his dad) which then lead to Steve being the cook.  So when Steve & I started dating he did all of the cooking.  Not even kidding---one of the ways he "won" me over was his ability to put the effort into cooking us meals that I could eat & that he always would go out of his way to take care of me.  He had an extremely hard time when he lost the ability to cook for us, not just because he married a wife who really couldn't cook---but because he prided himself in being able to cook for us & take care of us. Side note for those who don't know I don't eat meat other than seafood & even then I'm super picky with my seafood.  So with that I don't (didn't) know how to cook meat---like seriously at all.  Steve being the good hub would usually pretend that he likes whatever I cook---but I can tell when he doesn't like something.  When you are already battling the worst disease in the world, you can only fake you like something so much.  I've been learning, but up until recently we ate out A LOT.  So here you have it I've become a little Susie homemaker in the matter of a few months.  I clean obsessively now, cook/prepare all our meals, shop, use coupons, bake, make things, organize (that's right I said organize) etc.  *Sorry just got on a patting myself on the back tangent.*  I've had lots of help from lots of amazing people.  From people bring us food to give me a break, to friends coming over cooking with me to teach me new tricks, my new recipe box (thanks Brittany), family & friends giving me new recipes & ideas, my new crock pot (thanks to Steve's parents) & lots of encouragement I'm getting the hang of it.  It was an adjustment to planning meals & grocery shopping the right way but it's kinda gotten fun.  So this week we have Polish Monday I made homemade Perogi's & Halushki (kind of impressed myself), tomorrow is our usual taco Tuesdays, Italian Wednesday, Crock Pot Thursday, & a special addition of Fattening Friday.  

I will keep y'all posted on my progress---but just another example that seriously if you set your mind to something you can do it.  

With that a few things----#1. I sorta (half intentionally) let the cat out of the bag for some of the big things Steve & I have coming up.  I still can't FULLY give all the details but no worries you will get a full detailed blog very soon.  But with that I  would like to say to each & everyone of you thank you for rallying around Steve & I ALWAYS when we need something. I'm beyond touched by your generosity, your love, your ability to make sure Steve & I know each of you care if your own way.  I honestly believe that Steve & I are the most blessed people in the world.  Honestly, anytime I have a need friends, Steve's family, my family, even perfect strangers always go above & beyond & shower us with love & support.  I don't even know if I can find adequate words to explain the feeling.  But know that Steve & I are so grateful for every person reading this being in our lives.  

With that I have something that has been on my mind & while I have the motivation & time to blog I want touch on it briefly.  It has 2 sides.  One is to be a blessing & the other is to share a blessing.  As often as I say that Steve & I are blessed we then thankfully hear stories of how we have "blessed" others with inspiration, motivation, perspective, etc.  This is an amazing experience & I want to continue to challenge everyone to keep the movement.  Sometimes, this is important, you are the only positive influence someone has in their life.  This has come into play in my life both personally & professionally & I sometimes see it as a burden---but with perspective I can see it as a blessing.  You are in people's lives for a reason & you may not always get it right---but when you can you should be building people up.  Encouraging one another.  You never know you might be the only person that reaches out to someone.  You may just have the right encouraging word to say to save someones life.  Never take that opportunity for granted.  I have seen several times in my life where I've missed that chance & I am now more cognizant of it & hope to encourage others to be as well. 

With that---I know I am growing as a person as I learn the balance of "care giving" & "wife". There are a lot of times where I feel like I get praised too much by others.  It helps to be encouraged (see above;) but sometimes I feel so lost when it comes to care giving.  I am learning & I am growing through it.  It has been such an adjustment as I touched on earlier from going from Steve catering me (literally) to me being responsible for everything.  I knew going into it, but you never know if you are really cut out for something until you try it.  I will say through some of Steve & my aggravations I have learned so many other important life lessons. I've learned more compassion for other people, empathy, understanding, patience, the list goes on & on.  Steve & I have always been an amazing team but sometimes it gets easy to play on opposite teams.  This happens in every relationship regardless but add our special circumstances it can happen a littler easier. Through each of this & lots of long conversations & perspective we both have learned to see each others side so much more.  I couldn't even imagine asking someone to scratch something & them not getting the right spot---while it can be so easy to get frustrated it's so important to remember that finding that spot means so much when you can't do it yourself.  One of the things I have always said about Steve is that I love his passion & it's that passion that keeps us together, because even if we blow up at each other it's his passion to sit & have a very open conversation that keeps us going so strong.  So while everyone says that Steve is blessed to have me, which I will admit yes he is.  I am also very blessed to have him---he has given me a whole new outlook on life.  I feel like I am growing more & more into the person I've wanted to be & I have him to thank for that.  

I also have each one of you---blogging is very therapeutic for me.  I appreciate y'all continuing to follow our story in spite of my sometimes poor grammar & my tangents.   I appreciate everyone surrounding us with prayer, love, & support & for ALWAYS always rallying around us in time of need. 

We have lots of things coming up in October that I will be reminding you all of but I am tired & this blog is already forever long so for now Good night to all.  Be blessed & be a blessing! Lots of love always! xo

Monday, September 3, 2012

Organized thoughts (sort of)

Sometimes it takes me a while to blog because I'm unmotivated, or don't have much to write about, or I'm too busy, but this time it's because I've had so much to write about that I needed to get my thoughts organized.  Well at least as much as possible--- So I'm gonna break down some thoughts & some updates as well as I can ;)

First of all yay for fall approaching.  As much as I'm a warm weather girl---I LOVE everything about fall. Love the "cool" not cold weather, love the leaves changing, football, pumpkin everything, boots, tights, fires, festivities, etcetcetc.... With that being said we have lots & lots coming up this fall.  There are some I am unable to write about until after they happen, but I've been asking for prayer for some of these things & and am happy to report the prayers have been working & a lot of these things have been falling into place perfectly! Thank you for constantly sending Steve & I best wishes & praying for us.  I truly believe that it's everyone pulling for us that is helping a lot of things we've been hoping for work out.  So thank you!

So on to the things I can write about.

An amazing friend Lori, is throwing the HOPEforSteve Golf Tournament which takes place October 20th @ 1:00 PM.  Steve & I are so appreciative of every ones help with these amazing fundraisers.  It's truly heart warming when I see all the effort & planning people are doing to help us be able to survive financially.  Because of these continued events I am able to do what I need to be doing, taking care of Steve.  Lori is one of the kindest people I've met & I am so grateful that she is in my life.  She's a ray of sunshine :)

On Thursday I received a phone call from a med student in Suwanne, GA who doesn't know Steve or I personally but heard of our story & felt compelled to help.  His honors fraternity is planning a fundraiser for Hope for Steve as well in October or November.  He is to be sending me the details to this event this week so as soon as I know the details I will pass them along.

As most of you know we have been in talks of the Fear the beard pub crawl for Steve's 30th.  Steve & I were having the debate of the date because his birthday weekend falls on GA/FL game.  With that I will digress momentarily to tell y'all about our experience at the GA this weekend.  It was one of the best weekends we had in a long time.  We drove up Friday mid day & just spent the day enjoying Athens.  Love love that town---literally everything about it.  That night we went with lots of dear friends to the Georgia theater, which since Steve's graduated they redid.  He is now able to get to every point in the theater & it's amazing!  The bands were all amazing---the company was all amazing---it was a wonderful experience!  After a fun night out with little sleep we then get up for game day!!  Jen & Danny met us at the hotel & we started with bloody marries & continued on.  Danny & Steve then went off to enjoy the game.  It was like saying goodbye to my baby the first day of school or something (not even kidding) when Steve left.  But thanks to Jen & all the girls (& guys) I was able to enjoy some fun time & felt relaxed with Steve knowing he was having fun.  Boy it was a HOT day in Athens but seriously so much fun (for both Steve & I).  Steve & Danny had great seats but right in the sun---however they stayed all the way to the middle of the 4th quarter.  Steve was exhausted after---overly so.  He pushed it to the point that we had to cancel plans on Sunday & even today he's still recovering.  While we love to take Steve on new adventures we don't want him to overdo it.  After this with much thought we decided it's probably best for us not to do GA/FL this year.  With all that ramble: The fear the beard pub crawl will be on his actual birthday Friday October 26th.  Now that we have the date we will start all the plans & will send info out within the next couple weeks.

Update on Steve:  Steve's been doing pretty well actually, he has his days where he doesn't feel 100% or that he is "moody" but through that he is still doing great.  He's been using a cream that his mom & a doctor created for the past few months & it's been helping him a great deal.  It helps with pain or discomfort and also helps when his throat feels tight or even when he has spasms.  The cream has been helping him feel like he is doing his part to help him last longer & we can see the effects.  We've recently decided as a family to put it on the market as more & more people have been using it & requesting it. is where you can go see more about the cream.  (Side note: I've been using the cream myself for when I hurt my back & got my mom & aunt on it as well) We've also been pumping Steve full of healthy fattening foods, lots of vitamins, & enzymes.  Since making the change to healthier foods Steve's been feeling more energized & has noticed some improvements.  We also had an amazing physical therapist, Lauren Polivka volunteer to come teach stretches & tricks we can use with Steve to help him stay more lose & comfortable.  This has helped tremendously.  Steve obviously still needs help with everything he does but with these aids things have been a little easier on him.  We are blessed that he is still able to enjoy all the foods he likes, he is still able to communicate, he is still able to move around & we hope with all these things we've implemented he will continue to be able to do these.

With all that being said---I've been thinking A LOT about happiness.  Without getting on a soap box I want to write a little about this.  As I've said before writing about these things is like therapy to me, so thank you to everyone who reads my rambles & gives me feedback.  I love receiving all the amazing messages, emails, notes from everyone & all the words of encouragement.  A common thing I hear (as does Steve) often from others is how we've been able to encourage & motivate people to live a happier life.  This is one of Steve & my favorite things is reading & hearing these stories from others.  It keeps us going & reminds us that we are helping people with our positive outlook.  I know those closest to us see us on days where we wouldn't motivate anyone---but most days we are on the up.  I appreciate hearing people saying how much they've taken our story & used it to improve their quality of life & I also appreciate seeing it first hand.  I have been thinking more & more about what makes people happy & I had to sort out these thoughts.  So here is my happiness according to Hope ramble. :)  For starters I believe a lot of people don't know what it is that will make them happy.  If you don't know what will make you happy---how do you find it?  Hear me out on this---people have ideas, but often when they do get what they thought was going to make them happy that happiness only lasts for so long.  On the contrary some people I see get it & I've been observing a lot of people & their happiness level & have come to learn a few things.  For starters the saying, you're only as happy as you make your mind up to be---IS TRUE! Seriously though think about it, in life you are OFTEN handed situations you NEVER could have prepared yourself for & while some people think when handed this they can never feel happy again.  Well, why not? Seriously why not?  Of course you can be happy.  I think that if everyone started being more happy with what they DO have & focus less on what they DON'T people would have more happiness.  This doesn't ever mean to stop thriving for more, but be happy with what you do have.  So often people focus on went wrong with their day, what they don't have, what they missed out on & forget to be thankful for what they do have.  It's funny the happiest people I know don't necessarily have the best situations but they made up their mind to be happy.  Everyone is capable of it---it may take some work---everyone is.  I think it's a balance of half knowing what will make you happy  & pursuing them & half of making the best of the unexpected situations that life hands that can help people lead a happier life.  Thank you for continuing to fill Steve & I with so much happiness by being in our lives, visiting us, calling/texting/emailing/mailing us, inviting us to fun amazing adventures, thinking of us, praying for us, & sharing your stories of filling your lives with more happiness.

Also, don't forget to get your Fear the beard shirts---especially if you'll be joining us for the pub crawl.  They are on the website under the donate tab.  Also---please if you do want a tshirt let me know a size, color (pink/grey), & your address.

We love each & every one of you & thank you for adding to our happiness.  Now go find yours :)

Wednesday, August 15, 2012

When there's a will there's a way.

When there's a will there's a way. 

I wanted to write a blog about my new favorite quote ever, cause it's so relevant to our life.  We often get told by people when they see us out, that they are pleasantly surprised to see that Steve & I are out & about.  Like when we went to Wannee, I take him to the beach, dog park, etc.  I always respond to everyone that says something that when there's a will there is a way.  Steve & I aim to live our lives as normal as we possibly can & do as much as we physically can.  So the will to live helps us find the way. 

My Mom taught me this at a young age & always taught it in a religious & worldly way.  She would say if it's God's will there will be a way---and then would also say that if you set your mind to something that you want to do you will find a way to do it.  If you have the will there is nothing that can stand in your way.  That's true for anything in life---if you are willing to do the work that it takes, you can get far.   

This has been coming into play in my life so much recently. The Hope for Steve Roller Hockey classic is an example of this.  A wonderful group of guys that are amazing friends & supporters of Steve saw the need & put together such a fun, thoughtful, & amazing fundraiser.  Somewhere around 200 people came out to show their support & love for Steve.  I wrote in my last blog about me leaving my job, and God willing this fundraiser has given Steve & I a way to know that I can stay home and take care of him worry free for a few months until I find an in home job.  It was such an emotional & joyful day.  I couldn't stop smiling all day & couldn't contain myself with how touching it was to see so many amazing people out to support Steve & I.  Seeing Steve's face light up as he would see old friends, hear words of encouragement, & watch the hockey game made me overjoyed.  

When I first decided to leave my job I was having a full out panic---since then slowly more & more is falling into place.  It's one of those examples that when you are following the path you are meant to things will start opening up for you.  

If y'all don't learn anything else from Steve & I please learn this--that if you want something enough, work hard on it enough, & have the will to do it---it CAN happen.  Don't think too hard about it, it can be applied to even the simplest things, like knowing you want to lay on the beach with your husband & then pulling/pushing/tugging him through the sand anyway you can to get there.  Please just go out & live your life, enjoy it.  I don't mean to sound preachy but I have learned a lot about life, love, relationships, the world, & myself & through these experiences I have found I can dig deep within myself to do things I never thought I would be able to do.  I want to remind everyone that when you are faced with something & you make a decision to do what you have to do---you WILL find a WAY.  

Monday, July 30, 2012

Adventures of HOPEforSteve :) Lots of updates!

Hey all!  Wanted to write a quick blog sharing about our trip & some new things coming up :)

Steve & I want to start this out THANKING everyone who has given us trips from the bottom of our hearts---it's amazing how much traveling helps Steve & I :)  It gives us joy & gets Steve out of his routine of constantly being home.  So thank you!

We recently were blessed to be able to take a week long road trip & I wanted to share a little about it.

 First place we were blessed to visit with a given away 2 night stay at the Blue Heron in, it's in Darien, GA.  This place is off the beaten path & SO worth it.  It's quiet, peaceful, & beautiful.  It's a bed & breakfast set up on marshlands in south GA.  The views were amazing & it's located close enough for us to have been able to go explore St. Simon's which was also amazing! Bill & Jan who ran the bed & breakfast are so welcoming & warm & they had a welcome dog Sassy to make you feel even more at home.  The breakfast was amazing also, & I now got a new sweet potato pancake recipe for all my new cooking adventures (which I will get into later:) Anyone needing a quick & peaceful getaway I would def recommend it :)

Our second stop was a gift given from Allison Potter, thank you again!! She was given a 2 night stay to Amelia Island & was unable to use it. It was really cool to be able to make a big road trip of this & see new parts of GA/FL we haven't explored.  We felt like travelers being able to go from one spot to the other---was really cool.  I stocked up on a ton of sea shells at Amelia Island as there beaches were covered with really pretty ones :)  Unfortunately this portion of our trip we got rained on both days---but it's okay any time out of the house somewhere near the beach & us being together is fun!  It was enjoyable to have a comfy room to stay with an ocean view & with the storms listening to the waves was AMAZING! :) We got lots of rest & relaxation here and enjoyed being able to rest without having anything to worry about!

The final stop was to stay the remainder of the week at the Dezember Condo near Clearwater.  It's obvious this is Steve & I's happy place as we try to go as often as we can.  Was amazing how breaking up the drive down by having the 2 other pit stops made the drive so much easier!  This part of the trip I was determined to get SUN! :)  Steve's parents made the trip that weekend also to hang out with us at the condo.  Was fun for us all to get to spend some time together stress free at the beach!  We got to see Lisa which is always nice unfortunately the last day Steve was feeling a little under the weather so we didn't make it back to see Dan, but no worries we will be back before too long.  We can't stay away from the condo too long! ;)  We successfully got nice & tan & were ready to head home to see the pups!  Always miss them being away for a week---but was SO nice to get away for a week :))) MUCH needed & MUCH appreciated for all that made it possible!

Isn't it always true that coming back after vacation it's much more difficult to return to the daily grind, but this was true plus much more.  Steve had a rough day Tuesday so I stayed home & did some paperwork from home that day & then leaving him Wed & Thur were heart breaking.  I broke down in tears multiple times those days.  Steve has a lot of difficulty doing ANYTHING on his own & that includes using the restroom---& when you gotta go, you gotta go but what do you do when you can't go on your own & there is no one there to help you?  It's been a while coming but I've had to make the tough decision to put in my notice at work.  As it's not fair that I leave Steve at home & go help complete strangers.  While I was holding onto this job for flexibility purposes---financially it isn't working out.  After lots of number crunching from Steve & I---we determined with the travel that my work demands it's financially cheaper for me to leave my job (as it wasn't paying enough at all & an in home nurse at this point is way out of budget) so I can stay home & take care of Steve instead of hiring someone.  After researching it was determined that even with Medicare covering a portion due to Steve still being in what they consider the early stages an in home nurse would cost more than I made in a month---with much thought & consideration we both decided it would be best for me to be home with him.  PLUS---I miss him while I'm away, I worry every second I am away from him.  Not a minute goes by that I don't wonder if he is OK, while we are blessed with amazing people coming & checking on him, it's now becoming unsafe & unfair for him to be alone.  It's also unfair to my job that I can't put 100% into my work & to myself that I am stretching myself so thin.  This is the best decision both financially & mentally & we appreciate everyone's support throughout this tough period.  My last day will be September 7th.  I have applied to several jobs where I can work from home & if anyone knows of any they could send my way I would also appreciate it, to have some back up. 
---> My Goal is to make HOPEforSteve a foundation---I want to be able to not only be home taking care of my husband but also want to help other PALS & caregivers as well.  This is something that I will CONTINUE to be working on over the next month as it is very time consuming. 

With that, wanted to remind everyone of some fundraising we are doing:

#1. Hope For Steve Roller Hockey Classic  This is a wonderful event that some of Steve's old hockey buddies have put together for us!  Words cannot express how grateful we are for this!  My momma will even be flying in to be apart of this special event :)  The event is August 4th, starting at 4 PM at

Pickneyville Park Roller Hockey Complex.  There will be a silent auction, food, hockey, & a HOPE for Steve booth set up with Tshirts, bracelets, & car decals.  
#2. We are still selling bracelets & car decals, but we recently added some amazing t shirts that Steve & I designed.  They will be sold for $20 a piece.  If interested go to click on the donate tab & you will see where it instructs you to donate directly to Hope & Steve.  Please be sure to include if you want a male or female t shirt as well as what size.  We placed our first order & they should arrive the 1st :) I'm excited about them! 

#3. There are a few other fundraisers in the process as we speak that others have put together---as we get more details & dates I will update y'all :)

special thanks:
Just wanted to write a few thank you's:
*First of all again to EVERY single person that reaches out to Steve weather it's email, visiting, prayers, food, facebook messages, twitter, etc.  You all are amazing & I see that each time he gets a large amount of out reach he has better days--so thank you---you all are keeping him going :)  
*Special thanks to all of my friends/family that have been there for me lately.  I've had a stressful few weeks with trying to balance both work & Steve & home life & my health & my sanity & I need to thank everyone who has been there to wipe my tears, hug me, snap me out of a funk, teach me to cook new things, share funny stories, come visit, brought food, or just simply sent me a message telling me I'm doing great.  Without each of you I would have lost my mind a long time ago.  Thank you for constantly staying by my side even when I'm unable to be myself!
*I need to thank STEVE :) I need to say that Steve has taught me so much about life, love, & relationships but also taught me a lot about myself.  Steve is experiencing one of the toughest things anyone has to face & still he loves & cares about me enough to constantly check on me & if I'm okay.  He's very tolerant of my moods & understands (probably more than anyone) when I'm just blah.  He always has my back no matter what the situation, even if I may be overreacting he has my back.  He is so loyal & encouraging & when everyone would understand him being selfish & focusing on himself, he never fails to check in to make sure I'm okay.  Steve knows how difficult it's been with me trying to balance work & being home with him & was the biggest supporter in my leaving my job---Not just because he wants me home so we can spend more time together but because he hates to see me stressed out.  That is a huge testament to what a great person Steve is & I want to thank him!!
*Special thanks again to my sister for constantly keeping up with paypal & our website!  Jes is very quick to act with any updates or changes that need done & we are very grateful for her!
*Steve's friend from his old work Jordan, & the whole company recently sent us a wonderful envelope full of letters from his buddies from Technipower sharing stories how Steve has encouraged him.  This was so thoughtful & touched Steve & I both so much!  Thank you to the whole TechniPower team for never forgetting about Steve & always being there when we need you. 
I know I am forgetting people, but honestly everyone of you who are there for us & support us (you know who you all are) thank you---from the bottom of our hearts.  You guys are our fuel & we love you all dearly.