travel tips
I've had a few people email me & ask for travel tips & I'm honored to think that people want my tips. I do have some from all these trips & figured I would write a blog to share with everyone. Some are just general tips & others are for handicapped travelers.
When planning a trip, especially a road trip I find it important to make a "lose schedule"to stick to while allowing time for things to "pop up." You may find something else you enjoy along the way that you want to stop at & it's important to allow time for those things as that's the beauty of any vacation is finding new things to explore & learn from. Also, allow time for unexpected problems that could come up: car problems, sickness, etc. The lose schedule will help you keep on track with the things you want to see and time and trust me---without my schedule on our past trips I would have ended up staying at several places longer and missed out on other things on my list I wanted to see.
Again if you are taking a road trip always set aside money for gas that you will not touch or spend on anything else. There are a few websites that will help you calculate how much money you need but this here is my favorite I found & was the most accurate. Trust me just because you see that awesome souvenir you have to have if it is spending your gas money---don't do it. Last thing you want is to be stranded somewhere if you have an emergency but spent all your spending money.
If you are like me & like to speed there are 2 options to help decrease your risk in getting that buzz kill speeding ticket. 1 is bring a radar detector or know the hot spots for cops & always be on the alert. There are a few places you can count on seeing a cop: toll booths, state parks, construction, state lines, & most major cities. Now you will have the other cops along the way in other places but if you follow traffic flow you will typically see everyone slow down when people spot a cop. Of course there is always the option to not speed. :)
Eating: I've learned that a lot of the fun in a road trip is getting to eat the new exciting food in different cities, however for those who are on a budget & maybe only want to eat 1 meal out it is possible to eat in your car or hotel. If you are staying in a hotel most have continental breakfast where you can not only eat breakfast until you are satisfied but also snag some snacks. If you are driving brink a cooler & you can go to any local grocery store to get whatever snacks you must have. Granola bars are easy as well as sandwiches. My favorite way of saving money (& the environment) is instead of spending money on bottle waters was to invest in a Britta water bottle where you can fill up at any fountain or sink and count on the water being fresh.
Packing: Now everyone who travels have different needs but these are some general tips. Weather no matter how many times you check it is unpredictable; always be prepared for all temperatures. Even in the tropics they have cold days. You also never know the temperature of restaurants, hotels, etc. It's always better to be over prepared. With Steve & all of his medical stuff our #1 thing I make sure we have is all of his medications, medical equipment, & I also pack any extra in case of emergency medications (antibiotics, anti-nausea, extra prescribed medications just in case, extra vitamins & natural supplements, etc). If flying I make sure to always have room for these first & am willing to pay the extra check bag fee if I need to, to assure we have all medical needs taken care of. I can't stress this enough---can't imagine anything worse then to go on a vacation without all medications needed. Along with medications I also bring a first aid kit---for the accident prone, like me, this will be used I include :neosporin, band aids, peroxide, alcohol, & gauze pads. Oh and lots of hand sanitizer. Lots & lots....Aside from my engagement & wedding ring I tend to not bring valuable jewelery with me on trips. If you leave your valuable stuff home you can assure you won't risk losing it or getting it stolen. Unless it is something that is needed it is always recommended to leave it home. I found this site & loved their packing list. Of course each persons list is unique but if you write it out you will lower your chances of forgetting important things.
Other miscellaneous tips:
---Always have some cash on you for tolls, parking, & entry fees
---Have a GPS & map, you never know when your GPS will lose satellite signal & at least you will have a map as backup in case.
---Take lots of pictures & even take duplicates. You will never regret taking too many photos.
---If you want to remember something from your trip write it down. I do a travel journal & I value them to be able to read back on them when I'm not traveling as well as to jog my memory on things I absolutely want to remember.
---If you want to buy things on your trip; especially a road trip chose one "souvenir item" to get at each place you visit. This will help keep the cost down as well as assure you have the keep sakes you want for your trip. You can do a scrap book of post cards, magnets, etc. This helps keep down the buying of things that you will eventually throw away or throw in a drawer (we are all guilty of this).
---Make sure you take time to just look around & enjoy what you see. It's easy when traveling to get caught up in the driving/flying/traveling/stress & to forget to enjoy the moment. I tend to take at least 5 minutes at each spot to put my phone away, journal away, etc & just enjoy what I'm seeing.
---This is a big one for those who are traveling for extended periods---take care of yourself. Get the rest your body needs, eat right, drink plenty of water, take extra vitamins (you are coming across a lot of new germs your body isn't used to), wash your hands, etc. If you don't take adequate care of yourself you could end up getting sick during your trip & missing out on travel days.
---Don't be too afraid to talk to people you meet while being smart. You can meet some of the most incredible people while you are traveling but be smart. People don't need to know where you are staying or your intimate details of your life. If you don't feel comfortable go somewhere else where you will, but don't let fear ruin your chance of meeting some great people.
---I know it sounds stupid, but if you are sleeping in your car lock your doors at night, lock your hotel room, don't leave valuable things in your car when you leave it. Travel smart so you don't have any regrets.
---If you are traveling alone advice I once received is to have a check in friend. A friend you check in with daily to let them know where you are, your plans, etc. It's always important to protect yourself just in case you come across anything out of the ordinary.
---If you get lost instead of stressing about it---enjoy it you never know what you will stumble across while being "lost".
---In general if you find a hotel that has vacancy that night (happens often on a road trip when you get a hotel last minute) you can negotiate your price.
Handicap traveling. This is something I've learned a lot about the past year and a half & will always continue to learn. Travel is still possible even with the most difficult handicap situation, do not let circumstances stop you from living your life. Traveling with handicap needs may require more planning because unfortunately not everything is handicapped accessible BUT when there is a will there is a way. We bring both a push wheel chair & the power wheel chair, as some places do better with the push as opposed the power. When going to the beach no matter which it is if you do some research you will learn of some handicap beaches where access is easier as well as some public beaches also provide beach wheel chairs. Most state parks have at least some accessibility so do not avoid places that seem too out doorsy because most will have a paved pathway to enjoy. If you are flying with a handicap person it is great to call the airlines ahead of time to assure that you will have seats near the front of the plane & hey sometimes if the plane isn't booked you could always get a free upgrade :). Same with hotels---always ask for the handicap room when booking your room, not only to assure you save the room but also helps alert the hotel that you will probably need some extra assistance to get checked in. If your loved one has any special eating requirements don't rule out going out to eat at all, most restaurants with enough preparation are able to accommodate. Always allow extra time with traveling when traveling with a handicap person. It's better to allow you the time needed rather than be rushed with any possible delays. Know that especially with someone in Steve's condition with ALS to always be prepared for the unexpected (sometimes ALS patients or others with disabilities may not feel "up for" doing anything on certain days) & if you plan time for this it helps eliminate some possible disappointment. Also, don't expect (again unfortunately) for everyone to be 100% knowledgeable about their handicap amenities again research ahead of time. This helps avoid any unnecessary aggravations. I mentioned earlier about medications & the importance of remembering them but something additional would be if the medicine needs to be refrigerated. This is something that you will need to request a fridge in hotel room---which at most they are available upon request & as well as transportation if you need a cooler etc.
Travel is such a remarkable growing experience & should never be feared. I hope this helps people to go out & see the world more. Remember there is a big amazing world ready to be explored.
Just like everyone has their own taste & style everyone travels their own way. Go get your feet wet & find out what you like & don't like & once you find what you love---do it often!
Lots of love!
When planning a trip, especially a road trip I find it important to make a "lose schedule"to stick to while allowing time for things to "pop up." You may find something else you enjoy along the way that you want to stop at & it's important to allow time for those things as that's the beauty of any vacation is finding new things to explore & learn from. Also, allow time for unexpected problems that could come up: car problems, sickness, etc. The lose schedule will help you keep on track with the things you want to see and time and trust me---without my schedule on our past trips I would have ended up staying at several places longer and missed out on other things on my list I wanted to see.
Again if you are taking a road trip always set aside money for gas that you will not touch or spend on anything else. There are a few websites that will help you calculate how much money you need but this here is my favorite I found & was the most accurate. Trust me just because you see that awesome souvenir you have to have if it is spending your gas money---don't do it. Last thing you want is to be stranded somewhere if you have an emergency but spent all your spending money.
If you are like me & like to speed there are 2 options to help decrease your risk in getting that buzz kill speeding ticket. 1 is bring a radar detector or know the hot spots for cops & always be on the alert. There are a few places you can count on seeing a cop: toll booths, state parks, construction, state lines, & most major cities. Now you will have the other cops along the way in other places but if you follow traffic flow you will typically see everyone slow down when people spot a cop. Of course there is always the option to not speed. :)
Eating: I've learned that a lot of the fun in a road trip is getting to eat the new exciting food in different cities, however for those who are on a budget & maybe only want to eat 1 meal out it is possible to eat in your car or hotel. If you are staying in a hotel most have continental breakfast where you can not only eat breakfast until you are satisfied but also snag some snacks. If you are driving brink a cooler & you can go to any local grocery store to get whatever snacks you must have. Granola bars are easy as well as sandwiches. My favorite way of saving money (& the environment) is instead of spending money on bottle waters was to invest in a Britta water bottle where you can fill up at any fountain or sink and count on the water being fresh.
Packing: Now everyone who travels have different needs but these are some general tips. Weather no matter how many times you check it is unpredictable; always be prepared for all temperatures. Even in the tropics they have cold days. You also never know the temperature of restaurants, hotels, etc. It's always better to be over prepared. With Steve & all of his medical stuff our #1 thing I make sure we have is all of his medications, medical equipment, & I also pack any extra in case of emergency medications (antibiotics, anti-nausea, extra prescribed medications just in case, extra vitamins & natural supplements, etc). If flying I make sure to always have room for these first & am willing to pay the extra check bag fee if I need to, to assure we have all medical needs taken care of. I can't stress this enough---can't imagine anything worse then to go on a vacation without all medications needed. Along with medications I also bring a first aid kit---for the accident prone, like me, this will be used I include :neosporin, band aids, peroxide, alcohol, & gauze pads. Oh and lots of hand sanitizer. Lots & lots....Aside from my engagement & wedding ring I tend to not bring valuable jewelery with me on trips. If you leave your valuable stuff home you can assure you won't risk losing it or getting it stolen. Unless it is something that is needed it is always recommended to leave it home. I found this site & loved their packing list. Of course each persons list is unique but if you write it out you will lower your chances of forgetting important things.
Other miscellaneous tips:
---Always have some cash on you for tolls, parking, & entry fees
---Have a GPS & map, you never know when your GPS will lose satellite signal & at least you will have a map as backup in case.
---Take lots of pictures & even take duplicates. You will never regret taking too many photos.
---If you want to remember something from your trip write it down. I do a travel journal & I value them to be able to read back on them when I'm not traveling as well as to jog my memory on things I absolutely want to remember.
---If you want to buy things on your trip; especially a road trip chose one "souvenir item" to get at each place you visit. This will help keep the cost down as well as assure you have the keep sakes you want for your trip. You can do a scrap book of post cards, magnets, etc. This helps keep down the buying of things that you will eventually throw away or throw in a drawer (we are all guilty of this).
---Make sure you take time to just look around & enjoy what you see. It's easy when traveling to get caught up in the driving/flying/traveling/stress & to forget to enjoy the moment. I tend to take at least 5 minutes at each spot to put my phone away, journal away, etc & just enjoy what I'm seeing.
---This is a big one for those who are traveling for extended periods---take care of yourself. Get the rest your body needs, eat right, drink plenty of water, take extra vitamins (you are coming across a lot of new germs your body isn't used to), wash your hands, etc. If you don't take adequate care of yourself you could end up getting sick during your trip & missing out on travel days.
---Don't be too afraid to talk to people you meet while being smart. You can meet some of the most incredible people while you are traveling but be smart. People don't need to know where you are staying or your intimate details of your life. If you don't feel comfortable go somewhere else where you will, but don't let fear ruin your chance of meeting some great people.
---I know it sounds stupid, but if you are sleeping in your car lock your doors at night, lock your hotel room, don't leave valuable things in your car when you leave it. Travel smart so you don't have any regrets.
---If you are traveling alone advice I once received is to have a check in friend. A friend you check in with daily to let them know where you are, your plans, etc. It's always important to protect yourself just in case you come across anything out of the ordinary.
---If you get lost instead of stressing about it---enjoy it you never know what you will stumble across while being "lost".
---In general if you find a hotel that has vacancy that night (happens often on a road trip when you get a hotel last minute) you can negotiate your price.
Handicap traveling. This is something I've learned a lot about the past year and a half & will always continue to learn. Travel is still possible even with the most difficult handicap situation, do not let circumstances stop you from living your life. Traveling with handicap needs may require more planning because unfortunately not everything is handicapped accessible BUT when there is a will there is a way. We bring both a push wheel chair & the power wheel chair, as some places do better with the push as opposed the power. When going to the beach no matter which it is if you do some research you will learn of some handicap beaches where access is easier as well as some public beaches also provide beach wheel chairs. Most state parks have at least some accessibility so do not avoid places that seem too out doorsy because most will have a paved pathway to enjoy. If you are flying with a handicap person it is great to call the airlines ahead of time to assure that you will have seats near the front of the plane & hey sometimes if the plane isn't booked you could always get a free upgrade :). Same with hotels---always ask for the handicap room when booking your room, not only to assure you save the room but also helps alert the hotel that you will probably need some extra assistance to get checked in. If your loved one has any special eating requirements don't rule out going out to eat at all, most restaurants with enough preparation are able to accommodate. Always allow extra time with traveling when traveling with a handicap person. It's better to allow you the time needed rather than be rushed with any possible delays. Know that especially with someone in Steve's condition with ALS to always be prepared for the unexpected (sometimes ALS patients or others with disabilities may not feel "up for" doing anything on certain days) & if you plan time for this it helps eliminate some possible disappointment. Also, don't expect (again unfortunately) for everyone to be 100% knowledgeable about their handicap amenities again research ahead of time. This helps avoid any unnecessary aggravations. I mentioned earlier about medications & the importance of remembering them but something additional would be if the medicine needs to be refrigerated. This is something that you will need to request a fridge in hotel room---which at most they are available upon request & as well as transportation if you need a cooler etc.
Travel is such a remarkable growing experience & should never be feared. I hope this helps people to go out & see the world more. Remember there is a big amazing world ready to be explored.
Just like everyone has their own taste & style everyone travels their own way. Go get your feet wet & find out what you like & don't like & once you find what you love---do it often!
Lots of love!
2012 in review
7 days late---but I want to write a quick review of 2012. The word of the year was adventure. A special thank you to so many people who helped us take many adventures. It started with several trips to Florida, then to a surprise honey moon from our dear friends Raymond & Erica rallying people to chip in to donate for us to take a trip to Coco Plum Island in Belize, more trips to Florida, music festivals, concerts, a summer trip to PA to visit my family, Athens for some GA games, a trip to Gulf shores for stem cell for Steve, an unreal road trip to California & back, then to close out the year with a trip to PA for Christmas with my family & New York City for New Years Eve again thanks to Raymond & Erica. Unreal.
So many people to thank for allowing these trips to happen; and not just those who gave financially but those who prayed for us, watched our dogs (Grant, Jen, Danny, in laws, Rachelle, Christina, Justin), took care of our house, helped paint the van (Jen, Danny, & Dave), & all of those who supported us to take these trips, understanding how important they are for us. I will touch on that in a minute.
So many other thank yous I need to say for 2012:
So many people to thank for allowing these trips to happen; and not just those who gave financially but those who prayed for us, watched our dogs (Grant, Jen, Danny, in laws, Rachelle, Christina, Justin), took care of our house, helped paint the van (Jen, Danny, & Dave), & all of those who supported us to take these trips, understanding how important they are for us. I will touch on that in a minute.
So many other thank yous I need to say for 2012:
- To everyone who sent us some sort of message of love. We received so much love & support from everyone around us & it is that support that honestly helps us to continue this fight. Every kind word gives us hope & strength & is appreciated.
- For every meal. So many people this year blessed us with food----between bringing Steve lunches when I was working to the dinners & yummy deserts. So helpful & so appreciated.
- For those who spent a lot of energy on putting together amazing fundraisers. We had several successful fundraisers in 2012---that allowed me to be able to leave work to stay home & take care of Steve. That is an incredible gift that I am grateful for each day.
- For those that participated in buying our bracelets & t-shirts & helped spread the word, this has helped us with all bills, medical expenses, medicine, etc.
- To everyone that helped us come up with the money for stem cell---the fact that we were able to do this is a blessing beyond words. It's hard to say unless you are faced with this situation what you will try & not try---but our attitude has been since day 1 that we will try EVERYTHING we can. progressions may continue but stem cell at least gave us a few months of a break & to an ALS patient that is like giving an extra 15 years.
- To everyone that stopped by to visit us, drink wine with me ;), help me clean, etc.
- For every prayer & good thought sent our way. These help A great deal :) keep them coming!
I have to say that I learned more in 2012 than probably my whole life (I think I may have said something similar about 2011, but 2012 wins). I have 2 favorite quotes that sum up my lessons learned.
ALS teaches a lot of lessons on life but the main one really is to take every good day & enjoy it & be thankful for it & take the bad days with stride & strength & learn to not be discouraged by the bumps in the road. There will always be bumps but ALS makes those bumps that may occur to some on a yearly basis, happen on a weekly basis. So, it's so important to learn to take the bad days with stride & not to let it ruin the good days to come & when you do have a good day don't waste it. Another important thing I learned this year is that everyone is going to have an opinion. People's opinions however should never determine how I feel about myself. The only approval I need (other than God's) is myself. God will put the people you need in your life when you need them. Those people may not be meant to be in your life forever but may be there to teach a lesson. If we focus too much on the "drama" then it's easy to miss the lesson. I've learned to appreciate each person in my life no matter how the relationship ended up.
My main goal for the new year is to focus more on the positive & less on the negative. I am a very positive person already but I do get distracted & focus energy on the negative too. I don't want to waste any more time or energy on the negative. So that is my main goal.
I hope deeply for some new advancements in treatment for ALS comes and also that we can continue to find natural ways to help continue to increase the value of Steve's life. We've implemented so many vitamins/enzymes/creams/medicines/natural foods/etc into Steve's life & I'm so grateful for each discovery we made in 2012 that proved helpful & hope for more & more in 2013.
I will be working on some special projects this year. After we discovered this year how therapeutic traveling is for us---I hope for lots of more fun adventures & trips. The memories we have of these trips help us on every difficult day. Each trip we take Steve & I grow closer, learn so much, & have our spirits restored. That is why we do them so often. It keeps us going & positive & helps us to remember that life is to be enjoyed & not get stuck in the easy trap of negativity.
Okay closing note: Our last trip was incredible & wanted to share a link to our photos from PA, NYC, Virgina Beach, & Charleston. Loved spending time with my family & soaking up all the love from them since I don't get to see them often, then NYC---doesn't matter how cold it was, I LOVE that city & it was such an incredible experience to be there for New Years eve. I had so much fun & will NEVER ever forget the experience as long as I live. I want to go back & explore more for sure! & Of course our stops at the beaches on the way back were awesome & I fell in love with Charleston in the short time we were there & am already saving money for us to plan a longer trip there. photos from this adventure
Lots of hope & love for the new year & remember to make every day count.
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.
Love!
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.
Love!
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!
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.
Blessings:
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 : .http://sunshineshy.blogspot.com/
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: http://jeanhuangphotography.wordpress.com/2012/11/21/show-thanks-give-hope-los-angeles-portrait-photographer/
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.
Lessons:
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!
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 Neurolastcream.com 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.
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!
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!
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!
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.
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!!
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!