Some days are better than other days...
I try to keep most of my posts positive because I try to keep most of my thoughts positive, but sometimes I have to write real blogs for y'all because of how real ALS is.
I have to say that watching a loved one deteriorate is probably one of the hardest things to do...but add any addition pain for your loved one & it turns pretty horrible. Steve has been having some issues with throwing up after meals, but never consistent enough for me to count it as something in his food. My only other connection I can think of is phlegm. Steve, like most ALS patients, has an excess amount of phlegm but as of late it seems worse. It has a cough some days but it's not consistent and there are no other signs of it being a bug. After speaking with his doctor this is one of those "can happen with ALS" explanations. I honestly try not to think about what bad can or is going to happen in the future, I like to focus on the present moment; and focus on the positive that still remains & positive in the future. Just on days when Steve is sick on top of ALS I catch myself fearing too much of the negatives that could happen. It's a good thing that I pay attention to assure he gets the proper care but even after talking to doctors and assuring he has all things that can help if I'm still thinking of it---I have to work double to change my thoughts off the negative.
On days like these I tend to pull the whole "oops I forgot to drink anything in the last 5 hours oops did I eat today?" & it makes me think of all the other people out there taking care of their loved ones (whether it be ALS or something else) & the importance of the caregiver taking care of themselves. The reality is how well can you take care of someone if you aren't taking care of yourself. Although I truly put a lot of energy into taking care of myself I forget & wanted to write on this in hopes to remind all the care givers to make sure they take time to care for themselves.
One thing I have found that has been my most helpful "take care of me" tool has been yoga. Now I am still not to where I want to be with my practice, but seeing progress always makes me happy. :) I originally started yoga to help with strength to lift Steve, balance for when I do lift him, as well as to help with any extra pain affiliated with all the lifting & moving. I never knew that it would become more. First of many is it's my reminder to make time for me---I do yoga at home with myyogaonline.com so that if Steve has any sort of emergency I'm there. However, it is the time where he gives me that he won't ask for help with an itch, getting a drink, etc. It has also been another one of those reminders not to doubt myself. I used to think a lot that I wasn't capable of certain things, as I have so often proved myself that I am in fact capable with taking care of Steve; yoga has done the same. It's a wonderful reminder that with determination, the right attitude, & practice I can do anything. Surprisingly I find it even helps me get more centered. I am VERY scattered brain (not negative talk, just true;)) & with all that goes into caring for someone with ALS it has gotten worse---so yoga helps me get centered and focused to where I find myself becoming more mentally clear. I'm grateful I didn't let other people's negative view of what yoga could be stop me from taking my own journey with it. It's helped me a great deal along with journaling, praying, mediation, & vent sessions with friends.
It's so important that we all find our own self care technique & you'll be surprised to find that when you start in one area you will continue to carry through in others. IE: working out can lead to eating right which can lead to more energy to do better work, etc....
To all of my caregivers out there, please remember that you are valuable & you need to make sure you take care of you. AND---I will always try to practice what I preach :)
Also, please be praying for Steve. When putting him to bed tonight he seemed to be on the mends, but please be praying he continues to feel healthy & we don't have any more set backs.
A huge thank you to every single person that follows our story, shares it with others, shares your stories with us, shows us love, supports us, & surrounds us with prayers & warm thoughts. You all reenergize us when we feel low & help continue to lift our spirits in hard times. Lots of love to everyone!
I have to say that watching a loved one deteriorate is probably one of the hardest things to do...but add any addition pain for your loved one & it turns pretty horrible. Steve has been having some issues with throwing up after meals, but never consistent enough for me to count it as something in his food. My only other connection I can think of is phlegm. Steve, like most ALS patients, has an excess amount of phlegm but as of late it seems worse. It has a cough some days but it's not consistent and there are no other signs of it being a bug. After speaking with his doctor this is one of those "can happen with ALS" explanations. I honestly try not to think about what bad can or is going to happen in the future, I like to focus on the present moment; and focus on the positive that still remains & positive in the future. Just on days when Steve is sick on top of ALS I catch myself fearing too much of the negatives that could happen. It's a good thing that I pay attention to assure he gets the proper care but even after talking to doctors and assuring he has all things that can help if I'm still thinking of it---I have to work double to change my thoughts off the negative.
On days like these I tend to pull the whole "oops I forgot to drink anything in the last 5 hours oops did I eat today?" & it makes me think of all the other people out there taking care of their loved ones (whether it be ALS or something else) & the importance of the caregiver taking care of themselves. The reality is how well can you take care of someone if you aren't taking care of yourself. Although I truly put a lot of energy into taking care of myself I forget & wanted to write on this in hopes to remind all the care givers to make sure they take time to care for themselves.
One thing I have found that has been my most helpful "take care of me" tool has been yoga. Now I am still not to where I want to be with my practice, but seeing progress always makes me happy. :) I originally started yoga to help with strength to lift Steve, balance for when I do lift him, as well as to help with any extra pain affiliated with all the lifting & moving. I never knew that it would become more. First of many is it's my reminder to make time for me---I do yoga at home with myyogaonline.com so that if Steve has any sort of emergency I'm there. However, it is the time where he gives me that he won't ask for help with an itch, getting a drink, etc. It has also been another one of those reminders not to doubt myself. I used to think a lot that I wasn't capable of certain things, as I have so often proved myself that I am in fact capable with taking care of Steve; yoga has done the same. It's a wonderful reminder that with determination, the right attitude, & practice I can do anything. Surprisingly I find it even helps me get more centered. I am VERY scattered brain (not negative talk, just true;)) & with all that goes into caring for someone with ALS it has gotten worse---so yoga helps me get centered and focused to where I find myself becoming more mentally clear. I'm grateful I didn't let other people's negative view of what yoga could be stop me from taking my own journey with it. It's helped me a great deal along with journaling, praying, mediation, & vent sessions with friends.
It's so important that we all find our own self care technique & you'll be surprised to find that when you start in one area you will continue to carry through in others. IE: working out can lead to eating right which can lead to more energy to do better work, etc....
To all of my caregivers out there, please remember that you are valuable & you need to make sure you take care of you. AND---I will always try to practice what I preach :)
Also, please be praying for Steve. When putting him to bed tonight he seemed to be on the mends, but please be praying he continues to feel healthy & we don't have any more set backs.
A huge thank you to every single person that follows our story, shares it with others, shares your stories with us, shows us love, supports us, & surrounds us with prayers & warm thoughts. You all reenergize us when we feel low & help continue to lift our spirits in hard times. Lots of love to everyone!
Life is better with you
For those of you who follow us on facebook or twitter you already know about our amazing Wanee experience but I wanted to write a quick blog about the best weekend, ever.
Steve & I as most of you know are always up for a good adventure; and last year we attended the Wanee music festival and enjoyed every minute of it. We knew that it was going to be a lot more difficult this year but we still wanted to attempt it. When we saw the line up we of course decided right away we WERE going to pull it off. Steve & I tweeted Michael Franti a few times; we are both big fans of Michael Franti & Spearhead (if you haven't heard of them---check them out you will love them) letting him know how excited we were to see him perform & asking to meet him. Being the kind soul that he is, he responded that he would love to meet us. Of course we were pumped then! :)
Michael went above any expectations we could have ever had. So after communicating with both his manager & tour manager we had passes lined up & plans to spend some time with him after the show, and that we could venture back stage before to find a good spot for Steve to watch the show. Right away as we walked in we were greeted warmly by Hossain, his tour manager, who told us Michael & his partner Sara were on stage & we could head that way. As we saw Michael & Sara for the first time we were greeted with a smile you'd expect from an old friend with big hugs to go along. They both began to tell us about their experience with catching up on our journey and after sharing some tears they continued to ask more details about our story. We spent the whole 30 minutes before show time talking with them explaining Steve's diagnosis & sharing how we got married. You could tell immediately that they genuinely cared and were touched by not only our story, but seeing Steve & me out enjoying our lives. They invited us to watch the show on stage---which added to the already awesome experience. It was incredible to watch Steve's face light up while watching the show.
Neither of us expected what happened during the show to be a reality. Before I get into that let me preface by saying Michael Franti & Spearhead put on an amazing show---so much energy, they literally brought out the sunshine & had the whole crowd dancing & having a good time. As Michael started playing "Life is Better With You", he then brought us out to introduce us to the crowd. The feeling of having thousands of people cheer on Steve & me as Michael told our story was so overwhelming and amazing. It moved both Steve & me to tears. Looking out in the crowd I saw we weren't alone. It was such an unreal moment to hear someone as well known as Michael understand what Steve & I have been trying to accomplish. We try our best daily to spread awareness & to spread the message of living life to the fullest & loving one another & he worded it so beautifully. What is even better than that is that he was so moved by our story that he shared it with thousands at Wanee. Now, so many new people now have a new understanding of what ALS is & what it does to people. They also got to see Steve facing the hardest thing anyone has to face but still out doing what he enjoys. He even invited us back out to dance with him for the rest of the song. It was so much fun! Just an added oh my gosh moment---the song he dedicated to us---I sing that to Steve all the time. Gooesbumps right. All in all we spent a good 5 hours with Michael Franti & Spearhead, & Sara & we will forever cherish it.
After the show walking through the festival we had so many people come and hug us & tell us how moved they were by our story & people saying that they were so proud to see Steve out enjoying himself. We even had a few people tell us they felt reborn after hearing what Michael had to say & seeing us on stage. It was an incredible moment---and it didn't stop there. Michael then posted our story on Facebook which shared our story with even more people. The response we have received has been overwhelming & has been so amazing. I have to thank each and everyone of you that sends us love & positive words. It makes Steve & me smile with each response we hear of ways we inspire you, so please continue to keep them coming :)
Here is a link to a youtube video of Michael Franti introducing us to the crowd: click here :)
SO about the rest of Wanee---was amazing---thanks to Danny & the guys for helping us with camping. Along with getting to meet & hang out with Michael Franti & Spearhead we also got to meet Artimus Pyle, Warren Haynes, & JB from Widespread Panic. So like I said---coolest day, ever.
Steve & I have been cuddled up behind the computer since Saturday with tears and smiles feeling blessed by what Michael Franti did for us. It is amazing to think that a celebrity would take the time to do this for us and learn about our plight and share it with all of his fans. It continues to helps us have more faith in people and is another reminder of the blessings that still remain in the world. Can't help but think about amazing the world would be if everyone had as big of a heart as Michael & Sara do. Who knows maybe this act will find someone who will in turn to donate the money needed to find a cure. We are still in shock that this happened to us & that we could be a part of bringing so much awareness to ALS. I truly feel rejuvenated & refreshed from this & still can't stop feeling like the most blessed person in the world.
To see more photos from Wanee click here :)
Side note---for everyone who follows us in Pennsylvania please check out this fundraiser my dear friend Kate is putting together for us. If you can come, please do, we would love to see you there! Cinco De Mayo Fundraiser
Steve & I as most of you know are always up for a good adventure; and last year we attended the Wanee music festival and enjoyed every minute of it. We knew that it was going to be a lot more difficult this year but we still wanted to attempt it. When we saw the line up we of course decided right away we WERE going to pull it off. Steve & I tweeted Michael Franti a few times; we are both big fans of Michael Franti & Spearhead (if you haven't heard of them---check them out you will love them) letting him know how excited we were to see him perform & asking to meet him. Being the kind soul that he is, he responded that he would love to meet us. Of course we were pumped then! :)
Michael went above any expectations we could have ever had. So after communicating with both his manager & tour manager we had passes lined up & plans to spend some time with him after the show, and that we could venture back stage before to find a good spot for Steve to watch the show. Right away as we walked in we were greeted warmly by Hossain, his tour manager, who told us Michael & his partner Sara were on stage & we could head that way. As we saw Michael & Sara for the first time we were greeted with a smile you'd expect from an old friend with big hugs to go along. They both began to tell us about their experience with catching up on our journey and after sharing some tears they continued to ask more details about our story. We spent the whole 30 minutes before show time talking with them explaining Steve's diagnosis & sharing how we got married. You could tell immediately that they genuinely cared and were touched by not only our story, but seeing Steve & me out enjoying our lives. They invited us to watch the show on stage---which added to the already awesome experience. It was incredible to watch Steve's face light up while watching the show.
Neither of us expected what happened during the show to be a reality. Before I get into that let me preface by saying Michael Franti & Spearhead put on an amazing show---so much energy, they literally brought out the sunshine & had the whole crowd dancing & having a good time. As Michael started playing "Life is Better With You", he then brought us out to introduce us to the crowd. The feeling of having thousands of people cheer on Steve & me as Michael told our story was so overwhelming and amazing. It moved both Steve & me to tears. Looking out in the crowd I saw we weren't alone. It was such an unreal moment to hear someone as well known as Michael understand what Steve & I have been trying to accomplish. We try our best daily to spread awareness & to spread the message of living life to the fullest & loving one another & he worded it so beautifully. What is even better than that is that he was so moved by our story that he shared it with thousands at Wanee. Now, so many new people now have a new understanding of what ALS is & what it does to people. They also got to see Steve facing the hardest thing anyone has to face but still out doing what he enjoys. He even invited us back out to dance with him for the rest of the song. It was so much fun! Just an added oh my gosh moment---the song he dedicated to us---I sing that to Steve all the time. Gooesbumps right. All in all we spent a good 5 hours with Michael Franti & Spearhead, & Sara & we will forever cherish it.
After the show walking through the festival we had so many people come and hug us & tell us how moved they were by our story & people saying that they were so proud to see Steve out enjoying himself. We even had a few people tell us they felt reborn after hearing what Michael had to say & seeing us on stage. It was an incredible moment---and it didn't stop there. Michael then posted our story on Facebook which shared our story with even more people. The response we have received has been overwhelming & has been so amazing. I have to thank each and everyone of you that sends us love & positive words. It makes Steve & me smile with each response we hear of ways we inspire you, so please continue to keep them coming :)
Here is a link to a youtube video of Michael Franti introducing us to the crowd: click here :)
SO about the rest of Wanee---was amazing---thanks to Danny & the guys for helping us with camping. Along with getting to meet & hang out with Michael Franti & Spearhead we also got to meet Artimus Pyle, Warren Haynes, & JB from Widespread Panic. So like I said---coolest day, ever.
Steve & I have been cuddled up behind the computer since Saturday with tears and smiles feeling blessed by what Michael Franti did for us. It is amazing to think that a celebrity would take the time to do this for us and learn about our plight and share it with all of his fans. It continues to helps us have more faith in people and is another reminder of the blessings that still remain in the world. Can't help but think about amazing the world would be if everyone had as big of a heart as Michael & Sara do. Who knows maybe this act will find someone who will in turn to donate the money needed to find a cure. We are still in shock that this happened to us & that we could be a part of bringing so much awareness to ALS. I truly feel rejuvenated & refreshed from this & still can't stop feeling like the most blessed person in the world.
To see more photos from Wanee click here :)
Side note---for everyone who follows us in Pennsylvania please check out this fundraiser my dear friend Kate is putting together for us. If you can come, please do, we would love to see you there! Cinco De Mayo Fundraiser
Perspective
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
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
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
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.
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.