I know I have written about this before, but some things have happened that inspired me to write on perspective again. Recently Steve's chair (he uses a Jazzy) died. We then had him use a few other borrowed chairs with out much success. Even after having a newer chair a little customized, it is still not functional for him. We are still not sure if his Jazzy is repairable and if it is going to be something that we can afford, as the repair company is not able to get to us until tomorrow. My prayer & hope is that it is something that is a quick affordable repair, however if not we will have some new challenges to face. Steve has tried several different chairs but do to the progression of his ALS his arms & hands do not work the same and he is unable to drive the chair with the ease he is able to with the Jazzy.
I never gave much thought to just how much a change of a wheel chair can be such a set back, but for someone with ALS who already experiences such limitations in mobility to all of a sudden not be able to move on your own or have to try to use something else is very difficult. It gave me some much need perspective about being grateful for my mobility & my independence. I know sometimes it's hard because I went from being the girl who went out every night to the girl who stays home (when we aren't traveling) most days to not feel like I'm "missing out"; then things like this happen and make me realize that in reality I'm blessed that I am capable to walk on my own, I'm capable of being able to drive, to talk on the phone, to text or write an email. Here is Steve in a wheel chair that won't move, having to ask me to type for him (although he is able to do some, it just is hard for him), take him to the restroom, shower him, feed him, wipe his nose, etc---and to now not having a working wheel chair. It's opened my eyes yet again to realize that I never have any reason to complain----ever.
I'm asking that everyone please pray that the repair goes well tomorrow and that it is something that is affordable and fixable. If that's not the case please pray we are able to find him a jazzy to replace his current one. This is a huge burden for Steve & while he feels bad that he's letting a chair get him down; it's completely understandable. On the outside looking in some may think that he should just try the other chair that was provided until he gets used to it, but being here seeing the frustration & pain it causes Steve to not be able to use the chair properly I understand.
This is just a small glimpse on to the things an ALS patient goes through---and the independent mobility was the one thing that kept Steve positive. He was able to wheel around the house or easily get in the van for us to go somewhere with the Jazzy and now he's not able to independently do anything.
Thanks again for all the constant support & prayers. Thanks for letting me come to y'all when we need something. I will hopefully have more answers tomorrow and will either be calling on y'all for help or giving a very excited update.
Much love as always. xox
Thursday, April 4, 2013
Sunday, March 24, 2013
When February gets you down there's always March ;)
Okay so as most of you February was a rough month for Steve & I with his recovery but with March came a new month & new attitude. :)
I've been helping (up until vacation) Steve's dad with remodeling our bathroom so Steve will be able to shower. We are so grateful for Steve's dad to be putting so much hard work into doing the bathroom & will be so grateful when the bathroom is "usable" for Steve. No more portable toilet, no more washing his hair in the sink, & no more sponge baths! That's the way it should be for Steve with all he has to face & a HUGE thank you to his dad for making it possible!
Now Steve & I are finishing out another amazing trip. A friend of ours Corinne was able to get Steve & I passes to Disney (Park jumper passes) for 2 days. It was my first time & Steve hadn't been since he was a kid. It was so much fun! Totally went back to feeling like a kid & rocking the Mickey ears one day & then Minnie the next :) Before Steve got diagnosed we were planning a trip to go but right as he got diagnosed and we were planning a wedding in 2 months we canceled all those plans to spend the money on our wedding & life. We never got back around to planning another trip until Corinne told us she got us passes & it made me so happy that we were finally doing something we had wanted to do before he got diagnosed. See we practice what we preach ;)
The whole trip was amazing but I have a few favorites from Disney: Seeing the castle, seeing the dumbo ride, watching Minnie flirt with Steve ;), & the world tour in Epcot.
We then drove to one of our favorite places. The Dezember family condo :)
We love coming to Clearwater for several reasons, but one if they have causeways where you can pull over park right on the sand & be right on the water. This is about the only realistic way I can get Steve to the beach, because he is so sensitive to extreme heat or cold when he gets hot we can put him in the van with the door open so he can still talk to us but have AC.
I've been helping (up until vacation) Steve's dad with remodeling our bathroom so Steve will be able to shower. We are so grateful for Steve's dad to be putting so much hard work into doing the bathroom & will be so grateful when the bathroom is "usable" for Steve. No more portable toilet, no more washing his hair in the sink, & no more sponge baths! That's the way it should be for Steve with all he has to face & a HUGE thank you to his dad for making it possible!
Now Steve & I are finishing out another amazing trip. A friend of ours Corinne was able to get Steve & I passes to Disney (Park jumper passes) for 2 days. It was my first time & Steve hadn't been since he was a kid. It was so much fun! Totally went back to feeling like a kid & rocking the Mickey ears one day & then Minnie the next :) Before Steve got diagnosed we were planning a trip to go but right as he got diagnosed and we were planning a wedding in 2 months we canceled all those plans to spend the money on our wedding & life. We never got back around to planning another trip until Corinne told us she got us passes & it made me so happy that we were finally doing something we had wanted to do before he got diagnosed. See we practice what we preach ;)
The whole trip was amazing but I have a few favorites from Disney: Seeing the castle, seeing the dumbo ride, watching Minnie flirt with Steve ;), & the world tour in Epcot.
We love coming to Clearwater for several reasons, but one if they have causeways where you can pull over park right on the sand & be right on the water. This is about the only realistic way I can get Steve to the beach, because he is so sensitive to extreme heat or cold when he gets hot we can put him in the van with the door open so he can still talk to us but have AC.
We also got to spend time with our dear friend Lisa. I wrote last about how her husband, a friend of ours, Dan, lost his battle to ALS on Valentine's day. It was so good to see Lisa and see how amazingly strong she is being. I know Dan is smiling down from heaven so proud of her. We will always miss him & we are so thankful we got to come spend time with Lisa & can't wait til our next visit. Her & I are two peas in a pod :)
As usual as the end comes up we are bummed for the trip to be over however we have a lot of fun things planned the next few months starting with my sister making a trip to visit over Easter weekend. Always good to have visitors even better when they are family! :)
As far as an update on Steve: he is doing well. He is using his DPS (the diaphragm pace maker) several hours a day and he will use it extra whenever he feels he needs the extra strength. We are giving him amazing healthy shakes through the tube in the mornings and he will eat lunch & dinner. Some days we give him extra tubes through the day if he didn't eat as much. He is doing well with the tube & it has been such a great tool. That's the thing with ALS a lot of the options they have to help you seem very scary but you soon accept & realize that they are only tools to help make life easier. Steve has gained a lot of his weight he lost after surgery back but still have some to go. He is doing great & is such a strong fighter. I am very proud of him. :)
Okay back to enjoying our last chill day :) just wanted to give y'all a quick overdo blog. Lots of love! xo
Click here if you want to see ----> pictures from our trip
Thursday, February 14, 2013
Scared to go to sleep.
Wanted to write a few updates & also a therapy blog. May be a little on the heavy side---but it's needed.
For those that follow us know that Steve's feeding tube had gotten infected. I noticed it a few days after writing the initial blog that there was a lot of seeping & it had an odor, I knew right away that wasn't normal. Steve also the day before the odor began had gotten very sick & still wasn't able to eat and had very little energy. All added up to a phone call to our surgeon. After a trip to the doctor on Monday they said he has a local low grade infection and they started him on antibiotics & we had to wait another 48 hours to use the feeding tube. Because of these complications Steve has gotten very skinny & weak, so now first day using the tube again as the infection is getting better we need to strengthen him back up. This process has def been a difficult one and we appreciate everyones love & support through it.
We are also very saddened to hear that a dear friend of ours Dan Soyka who was also battling ALS had passed away in his sleep last night. We became friends with Dan & his amazing wife Lisa after we found out we had such similar stories---young newly weds facing just being diagnosed with ALS. We have gone to visit them in Florida & really enjoyed spending time with them. It's amazing how quickly you can bond with someone when you have so much in common. Dan was too young to die. This disease is ruthless & needs stopped. I can't believe that the FDA still drags their feet about ALS, I can't believe that as a society we haven't funded & supported the disease enough to find at least a treatment. There is no harsher disease in the world, and that's a fact. So why aren't we paying more attention. My heart aches for Lisa & Dan's family & I want to be in Florida with them all to hug them. It's such a tragedy. You can send warm wishes to them here & please remember them all in your prayers.
So here I am Steve is asleep & I'm scared to sleep. I have explained to people before my fear of going to sleep with him sometimes as when a mother has a new born & they want to watch them through the night to assure they are breathing. Well, I find myself doing this with Steve often & even more so tonight. I'm sad at the idea of what ALS is capable of & sad that so many amazing people have had to suffer with this disease & sad for all the people who have had to watch their loved ones suffer with such a horrific disease. I pray & do yoga & meditate to help me with the fear because I know it's not healthy, but some nights are harder than others. It wouldn't be fair if I only shared the positives with everyone because I want to help make everyone aware of how harsh ALS is so that maybe just maybe the right person will see this & be the person to find a cure/treatment.
So as far as Steve he is finally getting his appetite back some, we used the tube today with some success, & he is SLOWLY gaining strength. We are celebrating every single improvement because with ALS you just never know if once something gets so weak if it will improve. So every small improvement is so important. True meaning of celebrating the small things.
I do want to add some positives. A special thank you to some very special people.
First a general one to every one who texts/messages/calls to check on Steve. Your concern means the world to us. Thank you for caring for us, supporting us, & all the prayers & warm wishes.
Thank you to everyone who has donated or helped us financially. Financial burden is inevitable with ALS so thank you to everyone who helps ease the burden some.
Special thanks to our dear friends Raymond & Erica for taking time while visiting with their families to come & visit us & bring us cheer. They are celebrating their 10 year anniversary & because Steve is too weak for us to go to their party they came to visit us. Very thoughtful & means the world to us. They are like our family & we are very grateful for them!
Because of Steve's condition we didn't have any plans for Valentine's day which we celebrate love everyday but it's always nice to celebrate the day (side note despite Steve's rough 2 weeks he got me flowers delivered. So thoughtful & sweet that he put forth the energy since he has so little right now to do something extra to make me smile:)). Because of that our friends Danny & Jen came & cooked us a yummy Valentine's dinner. Again so thoughtful & we are so blessed to be surrounded by such love.
For those that follow us know that Steve's feeding tube had gotten infected. I noticed it a few days after writing the initial blog that there was a lot of seeping & it had an odor, I knew right away that wasn't normal. Steve also the day before the odor began had gotten very sick & still wasn't able to eat and had very little energy. All added up to a phone call to our surgeon. After a trip to the doctor on Monday they said he has a local low grade infection and they started him on antibiotics & we had to wait another 48 hours to use the feeding tube. Because of these complications Steve has gotten very skinny & weak, so now first day using the tube again as the infection is getting better we need to strengthen him back up. This process has def been a difficult one and we appreciate everyones love & support through it.
We are also very saddened to hear that a dear friend of ours Dan Soyka who was also battling ALS had passed away in his sleep last night. We became friends with Dan & his amazing wife Lisa after we found out we had such similar stories---young newly weds facing just being diagnosed with ALS. We have gone to visit them in Florida & really enjoyed spending time with them. It's amazing how quickly you can bond with someone when you have so much in common. Dan was too young to die. This disease is ruthless & needs stopped. I can't believe that the FDA still drags their feet about ALS, I can't believe that as a society we haven't funded & supported the disease enough to find at least a treatment. There is no harsher disease in the world, and that's a fact. So why aren't we paying more attention. My heart aches for Lisa & Dan's family & I want to be in Florida with them all to hug them. It's such a tragedy. You can send warm wishes to them here & please remember them all in your prayers.
So here I am Steve is asleep & I'm scared to sleep. I have explained to people before my fear of going to sleep with him sometimes as when a mother has a new born & they want to watch them through the night to assure they are breathing. Well, I find myself doing this with Steve often & even more so tonight. I'm sad at the idea of what ALS is capable of & sad that so many amazing people have had to suffer with this disease & sad for all the people who have had to watch their loved ones suffer with such a horrific disease. I pray & do yoga & meditate to help me with the fear because I know it's not healthy, but some nights are harder than others. It wouldn't be fair if I only shared the positives with everyone because I want to help make everyone aware of how harsh ALS is so that maybe just maybe the right person will see this & be the person to find a cure/treatment.
So as far as Steve he is finally getting his appetite back some, we used the tube today with some success, & he is SLOWLY gaining strength. We are celebrating every single improvement because with ALS you just never know if once something gets so weak if it will improve. So every small improvement is so important. True meaning of celebrating the small things.
I do want to add some positives. A special thank you to some very special people.
First a general one to every one who texts/messages/calls to check on Steve. Your concern means the world to us. Thank you for caring for us, supporting us, & all the prayers & warm wishes.
Thank you to everyone who has donated or helped us financially. Financial burden is inevitable with ALS so thank you to everyone who helps ease the burden some.
Special thanks to our dear friends Raymond & Erica for taking time while visiting with their families to come & visit us & bring us cheer. They are celebrating their 10 year anniversary & because Steve is too weak for us to go to their party they came to visit us. Very thoughtful & means the world to us. They are like our family & we are very grateful for them!
Again another thank you to my in laws for bringing me supplies & helping with Steve as I need. Very very appreciative to have them close by & that they haven't gotten annoyed with all the errands I've made them run!
Also another good note---because of how rough the past 2 weeks have been my Mom is coming to visit us....She will be arriving Monday. Sometimes all a girl needs is her momma. I know having her here for a few days will help refuel me & I am very grateful for such a supportive & caring mom.
Again thank you to everyone who cares & supports us & helps us spread awareness about this awful disease. If you think of it please share with someone about the disease, donate to an ALS organization or a pALS (person with ALS), or reach out to someone you know that has the disease to send them a warm thought. Please continue the movement & I pray it makes a difference.
Thank you for letting me write when I have a heavy heart. Sending everyone lots of love & remember to tell everyone important to you that you love them. You never know when it will be the last time you see/talk to them. Make sure they know how you feel.
Friday, February 8, 2013
Steve's surgery
As most of you who follow us know Steve had surgery Monday Feb 4th to get the diaphragm pace maker placed in as well as the peg tube for his feeding tube. When making the decision to get the pace maker the feeding tube was optional. I have been wanting Steve to get the feeding tube for close to a month due to some recent weight loss but wanted the decision to be his. With guidance from other pALS (people with ALS) & caregivers & prayers Steve decided to go ahead and get it. Because Steve had both procedures done on Monday he is having some extra pain but I couldn't imagine him getting the pacer without the feeding tube. He has been in so much pain & has not recovered enough from his surgery to want to eat & thankfully the feeding tube has allowed me to get some much needed nutrients into Steve. It's also been an excellent resource to get medicines/vitamins/etc into him as pills are currently (previously were as well) difficult for him to swallow.
For those who are unfamiliar with either of these procedures the simple not so medical way to explain it:
The Diaphragm Pace Maker (DPS) helps keep the diaphragm going & is essentially used to help prevent a tracheotomy in the future. It isn't a cure (because unfortunately that's not here yet) but it does help improve the quality of life. It is like a work out for the diaphragm & unlike other muscles that can weaken when ALS patients workout the pacer doesn't make the diaphragm weaker---it makes it stronger. The wires are connected to both sides of the diaphragm & the wires then plug into a box that helps pump the diaphragm. The box isn't always attached so he has the option to be able to go without it if he wants. The wires connect to a connector holder that sticks to Steve's skin. The wires are covered with gauze & tegaderm to protect the wires. These all get changed every 3 days or so & can be covered to shower.
The feeding tube I think is self explanatory but it helps us pump nutrients into Steve's stomach directly. We began using it immediately and although it's very uncomfortable for Steve right now I'm very glad it is getting nutrients into Steve.
I'm assuming these are going to bring some extra expenses with all the extra things we will need---but I will be on the hunt for the most cost effective way to implement this new change--with help from others & research I will def share whatever the best "cheap"way to stock up on supplies when I find it. :)
So Steve is still in a lot of pain but little by little he is getting better & despite that at this moment I would recommend it to any pALS. Every time Steve has been connected to the pacer despite the initial discomfort he is able to breathe with more ease & the feeding tube goes without saying; I've been trying to fatten Steve up & this helps more than the shakes I've been trying to push on him.
Dr. Kharsarinia at Piedmont is who did the surgery & he & the all the nurses were amazing. Just a heads up to any pAL considering this---make sure you or your care giver talk with the anesthesiologist if your loved one is having difficulties with phlegm. Unfortunately phlegm is a huge part of Steve's battle with ALS and after the surgery he is having some extensive issues but they were able to make sure he didn't have any issues during surgery because they were aware of his struggle with this.
I want to thank everyone for the prayers & well wishes. Also, thanks to my in laws coming to the surgery & keeping me calm & stopping over once a day to force me to take a break. It's been a rough week as it's never easy to see the one you love miserable but I keep trying to remember the end result (I also keep trying to remind Steve of that---but who wants to hear that when they are miserable;)
I will give more updates as I have them as well as any tips we find through this new step. Thanks to everyone that has been through both procedures for giving us suggestions, tips, & encouragement.
Please continue to keep Steve in your thoughts as he continues his road to recovery.
On a complete side note---seeing that we will be sort of "cooped" up for a while don't be surprise if a random "trip" pops up. Y'all know that Steve & I don't like staying home for extended periods of time. ;)
Lots of love.
For those who are unfamiliar with either of these procedures the simple not so medical way to explain it:
The Diaphragm Pace Maker (DPS) helps keep the diaphragm going & is essentially used to help prevent a tracheotomy in the future. It isn't a cure (because unfortunately that's not here yet) but it does help improve the quality of life. It is like a work out for the diaphragm & unlike other muscles that can weaken when ALS patients workout the pacer doesn't make the diaphragm weaker---it makes it stronger. The wires are connected to both sides of the diaphragm & the wires then plug into a box that helps pump the diaphragm. The box isn't always attached so he has the option to be able to go without it if he wants. The wires connect to a connector holder that sticks to Steve's skin. The wires are covered with gauze & tegaderm to protect the wires. These all get changed every 3 days or so & can be covered to shower.
The feeding tube I think is self explanatory but it helps us pump nutrients into Steve's stomach directly. We began using it immediately and although it's very uncomfortable for Steve right now I'm very glad it is getting nutrients into Steve.
I'm assuming these are going to bring some extra expenses with all the extra things we will need---but I will be on the hunt for the most cost effective way to implement this new change--with help from others & research I will def share whatever the best "cheap"way to stock up on supplies when I find it. :)
So Steve is still in a lot of pain but little by little he is getting better & despite that at this moment I would recommend it to any pALS. Every time Steve has been connected to the pacer despite the initial discomfort he is able to breathe with more ease & the feeding tube goes without saying; I've been trying to fatten Steve up & this helps more than the shakes I've been trying to push on him.
Dr. Kharsarinia at Piedmont is who did the surgery & he & the all the nurses were amazing. Just a heads up to any pAL considering this---make sure you or your care giver talk with the anesthesiologist if your loved one is having difficulties with phlegm. Unfortunately phlegm is a huge part of Steve's battle with ALS and after the surgery he is having some extensive issues but they were able to make sure he didn't have any issues during surgery because they were aware of his struggle with this.
I want to thank everyone for the prayers & well wishes. Also, thanks to my in laws coming to the surgery & keeping me calm & stopping over once a day to force me to take a break. It's been a rough week as it's never easy to see the one you love miserable but I keep trying to remember the end result (I also keep trying to remind Steve of that---but who wants to hear that when they are miserable;)
I will give more updates as I have them as well as any tips we find through this new step. Thanks to everyone that has been through both procedures for giving us suggestions, tips, & encouragement.
Please continue to keep Steve in your thoughts as he continues his road to recovery.
On a complete side note---seeing that we will be sort of "cooped" up for a while don't be surprise if a random "trip" pops up. Y'all know that Steve & I don't like staying home for extended periods of time. ;)
Lots of love.
Wednesday, January 23, 2013
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!
Monday, January 7, 2013
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.
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.
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!
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