When you watch the one you love and care for stop breathing twice, it effects your view of life without you even realizing it.
I have written about this before, but I cannot stay my cool and calm self when Steve has anxiety attacks. For the longest time I didn't understand why his "anxious face" immediately triggered me. Until last night.
Steve woke up twice feeling pretty crummy and having a lot of anxiety about how he felt. After a few hours of our normal" feel better tricks" not working, oils, massages, rearranging, praying, music, and eventually a good cry of release, he was still having so much anxiety and pain. After I finally caved and gave him benedryl as a last resort to let the poor guy get some sleep it finally dawned on me. There I am exhausted, scared, feeling alone, and worn out and having an epiphany.
It should be known that epiphany's are my favorite thing, but they always happen in the middle of the night when I should be sleeping. However, this one was remarkable. I realized that I have a touch of PTSD, about those times a little under 3 years ago when Steve died on me twice. Because the actions he was having right before and during the code look EXACTLY like his panic attacks look.
So now, after all this time, every time he has a panic attack, I do too. Because to me my mind immediately goes to me loosing him. It's a head game. ALS is one big head game.
Laying in bed watching Steve sleep last night I realized I have work to do. Steve deserves me to be the strong and calm Hope, and not panicking with him. People will respond to this probably telling me it's normal and not to put so much pressure on myself. Which I appreciate, I really do; but truth is, I DO need to work on it. Because I CAN.
I want to be Steve's rock and now that I know where the response comes from, I will be off to work. I'll let you know excitedly I'm very sure when I can make it through an anxiety episode from Steve without feeling overwhelmed myself. Because it will happen. I'll be patient with myself but also know it Will happen.
xox.
Thursday, March 31, 2016
Wednesday, March 30, 2016
caregiver social anxiety
I know I'm not alone in this one.
So often when I'm in public and I try to have a small talk conversation with others, I struggle. It gives me anxiety and I feel like I don't have anything to add. Conversations about activities going on around us, new restaurants I should try, how their kids soccer games went, concerts, vacations, normal life stuff.
Except I don't have a normal life. I mean of course it's normal to Steve & I, but those talks about their vacation to the beach last week doesn't really have much in common with my husband struggling to breath because the ridiculous pollen count in Georgia right now, or the fact that his feeding tube is leaking stomach acid.
Aside from that, small talk also makes me feel superficial. It's one of those conversations I have and at the end I'm rolling my eyes at myself. Did I just say that? Why? That's not what I actually think? I have a panic response and start complaining with the lady checking me out of the store about the traffic because of construction on the road. Do I actually care about construction? Nope. Not one bit. You know why? Because I leave my house for an hour every 2-3 weeks. Why would construction actually matter to me. Why didn't I just say that?
As a caregiver when I'm out of the house, I'm not fully out of there. A part of me is always home, responding to whomever is staying with Steve, and constantly checking my phone to see if they need me. Listening to people around me talk about their day to day lives often leaves me silent and feeling awkward. Because I'm not present enough to even be able to add to the conversations, let alone anything witty. It's usually a smile and a oh yeah.
It's good that I am aware of this, because it's something I now work on. Today at the eye doctor, I really tried to engage with the doctor about how his 3 year old leaves him wanting to sing songs to his patients. "That's cute, "I say, as I'm thinking about how much Steve and I wanted children. It was my choice not to have them. Steve has baby fever daily, and I know I couldn't take one more single thing onto my plate and a child is more than a plate full. I try not to bring myself into the room and not make it about me, but it happens.
So today's appointment was about more than just my eyes. It was about me needing to work on being present in even the most uncomfortable situations. It's learning to walk straight into the awkward, embrace it, feel it, and learn to deal with it. Rather than shutting down every chance of small talk. The random encounters used to be my favorite thing, and I will get it back. Now that I'm aware of it.
Anyone else know this struggle? What are some of your tricks?
So often when I'm in public and I try to have a small talk conversation with others, I struggle. It gives me anxiety and I feel like I don't have anything to add. Conversations about activities going on around us, new restaurants I should try, how their kids soccer games went, concerts, vacations, normal life stuff.
Except I don't have a normal life. I mean of course it's normal to Steve & I, but those talks about their vacation to the beach last week doesn't really have much in common with my husband struggling to breath because the ridiculous pollen count in Georgia right now, or the fact that his feeding tube is leaking stomach acid.
Aside from that, small talk also makes me feel superficial. It's one of those conversations I have and at the end I'm rolling my eyes at myself. Did I just say that? Why? That's not what I actually think? I have a panic response and start complaining with the lady checking me out of the store about the traffic because of construction on the road. Do I actually care about construction? Nope. Not one bit. You know why? Because I leave my house for an hour every 2-3 weeks. Why would construction actually matter to me. Why didn't I just say that?
As a caregiver when I'm out of the house, I'm not fully out of there. A part of me is always home, responding to whomever is staying with Steve, and constantly checking my phone to see if they need me. Listening to people around me talk about their day to day lives often leaves me silent and feeling awkward. Because I'm not present enough to even be able to add to the conversations, let alone anything witty. It's usually a smile and a oh yeah.
It's good that I am aware of this, because it's something I now work on. Today at the eye doctor, I really tried to engage with the doctor about how his 3 year old leaves him wanting to sing songs to his patients. "That's cute, "I say, as I'm thinking about how much Steve and I wanted children. It was my choice not to have them. Steve has baby fever daily, and I know I couldn't take one more single thing onto my plate and a child is more than a plate full. I try not to bring myself into the room and not make it about me, but it happens.
So today's appointment was about more than just my eyes. It was about me needing to work on being present in even the most uncomfortable situations. It's learning to walk straight into the awkward, embrace it, feel it, and learn to deal with it. Rather than shutting down every chance of small talk. The random encounters used to be my favorite thing, and I will get it back. Now that I'm aware of it.
Anyone else know this struggle? What are some of your tricks?
Tuesday, March 29, 2016
Divine Feminine Energy
Okay ladies. This blog is for you today. Men you could probably use a little freshen up on this as well. ;)
So often as females we are made to feel bad about what makes us feminine. Our curves, or bodies, our menses, our emotions, hormones, our nurturing...
It happens so regularly now that it's become a norm to tell a woman, "Stop PMSing and get a grip." Along with being called names if we show to much skin, women being shamed for breast feeding (I mean this one will never make sense to me), we care too much about others emotions, or act too maternal , etc.... The list is endless in ways in which we have become a woman shaming society.
This morning I woke up feeling bad, because yesterday I was feeling too many emotions. I was experiencing the heaviness of the flow and I took the day off mostly. I didn't want to watch a movie with Steve yesterday, I didn't make the list of things I had planned to make, or schedule those appointments, I didn't do much. (However, being a caregiver you don't get days off, so I was still showing up to my job, but just not doing anything extra).
I felt drawn to walk around this morning and pick up all the beautiful flowers that the trees have dropped and use them in my sacred space and while meditating. I had a beautiful image come to mind as I sat in this space. That on days where my emotions are heavy, it's the days I should celebrate my femininity the most. I should celebrate all that makes me a powerful, strong, soft, caring, divine female. Own the emotions that come with it and celebrate my ability to FEEL life.
So today I did just that, my meditation turned into a full ceremony. I celebrated my feminine energy and instantly I felt more energized, more positive, and more capable. Of anything. It really inspired me. So much, that I decided to write a blog on "the flow" ;)
But in all seriousness ladies. Don't beat yourself up when you experience emotions or moments of unsteadiness; instead take time to celebrate all that goes into making you the radiant female you are. It will shift things for you I promise. I plan to do this every single month. Because what happens to my body is special and makes me special, and it's something I won't be ashamed of anymore. I will instead use the excess energy for the good. <3
Monday, March 28, 2016
Impermanence
Growing up learning to depend on nature, I felt like I had a true understanding of impermanence. The tragic beauty of it. That just as the cherry blossoms bring magic to your life but will quickly disappear (the blossoms last just under 2 weeks), however, nothing taught it more than ALS.
When Steve was in the hospital for pneumonia, he stopped breathing on me & they had to intubate him (put on vent) and we almost lost him. A week with some great care he was able to come off the vent for 2 days. He was able to talk to me again after a week of using a communication board. I remember crying at the sound of his voice & although we were exhausted from the past 2 weeks, all we wanted to do was talk. For 2 days until suddenly it happened again.
He stopped breathing, this time he died for 10 minutes. Thankfully they saved his life & he then had to get an emergency tracheotomy. It was time & we weren't ready. We needed more time. More conversations. Which thankfully we have because of brilliant technology but sometimes when I hear Steve's voice on recordings it's a poignant reminder that nothings permanent. Nothing's guaranteed.
So enjoy every single minute of every single day. Because the beautiful gift of impermanence is the reminder to soak in this moment as much as possible. To stay present & let the rest go. Because the rest truly doesn't matter right now. All that does is this.
When Steve was in the hospital for pneumonia, he stopped breathing on me & they had to intubate him (put on vent) and we almost lost him. A week with some great care he was able to come off the vent for 2 days. He was able to talk to me again after a week of using a communication board. I remember crying at the sound of his voice & although we were exhausted from the past 2 weeks, all we wanted to do was talk. For 2 days until suddenly it happened again.
He stopped breathing, this time he died for 10 minutes. Thankfully they saved his life & he then had to get an emergency tracheotomy. It was time & we weren't ready. We needed more time. More conversations. Which thankfully we have because of brilliant technology but sometimes when I hear Steve's voice on recordings it's a poignant reminder that nothings permanent. Nothing's guaranteed.
So enjoy every single minute of every single day. Because the beautiful gift of impermanence is the reminder to soak in this moment as much as possible. To stay present & let the rest go. Because the rest truly doesn't matter right now. All that does is this.
Saturday, March 26, 2016
Nurse Aide
Nurses and caregivers are some of the best people in the world. Taking care of our sick loved ones, taking care of us, taking care of their families, and them. Managing it all with grace.
I feel like sometimes they don't get enough credit, although since being Steve's been diagnosed I have seen ways in which nurses do get some of the love they deserve, but a group of people I see not getting as much attention is nurses aides.
They might be some of the most undervalued people around.
Have you ever tried to give a completely paralyzed, vented, 160 pound man a bath by yourself. As you struggle to get him turned, through tears from both parties, putting your knee in his back to keep him turned, you first make sure trache isn't being pulled because the vent does that EVERY time you move them, trying your best to prop his unstable neck/head on a pillow, and not opening up the 30 just closed wounds by simply brushing it into something. Then you have the issue at hand. The BM, that made you have to turn him to begin with. With one hand and leg supporting his body you're on one leg and with one hand you have to clean up a not so solid BM.
Facts aren't always pretty y'all. But with an aide, it goes from battle to a peaceful, successful, much needed, deep cleaning. Time to put into wound care and bandaging and the right positioning post bath to prevent future break downs. The moral support while the patient may still experience pain, is the most comforting things for a carer. It's as equally satisfying to have help to comfort your loved one as it is to get them REALLY clean.
If you're an aide, let me tell you, I love you. Truly. You have a tough job, yet most of you make us feel calm while we are experiencing some rough stuff together. I guess that's why you become family so quickly, in times like these. We have a few friends & Steve's parents who have come to help me clean Steve, and those that may not be blood related, we're still family (Thank you Jeremy, Meredith, Jason, Meredith 2, Camille, & Garrett xox).
I feel like sometimes they don't get enough credit, although since being Steve's been diagnosed I have seen ways in which nurses do get some of the love they deserve, but a group of people I see not getting as much attention is nurses aides.
They might be some of the most undervalued people around.
Have you ever tried to give a completely paralyzed, vented, 160 pound man a bath by yourself. As you struggle to get him turned, through tears from both parties, putting your knee in his back to keep him turned, you first make sure trache isn't being pulled because the vent does that EVERY time you move them, trying your best to prop his unstable neck/head on a pillow, and not opening up the 30 just closed wounds by simply brushing it into something. Then you have the issue at hand. The BM, that made you have to turn him to begin with. With one hand and leg supporting his body you're on one leg and with one hand you have to clean up a not so solid BM.
Facts aren't always pretty y'all. But with an aide, it goes from battle to a peaceful, successful, much needed, deep cleaning. Time to put into wound care and bandaging and the right positioning post bath to prevent future break downs. The moral support while the patient may still experience pain, is the most comforting things for a carer. It's as equally satisfying to have help to comfort your loved one as it is to get them REALLY clean.
If you're an aide, let me tell you, I love you. Truly. You have a tough job, yet most of you make us feel calm while we are experiencing some rough stuff together. I guess that's why you become family so quickly, in times like these. We have a few friends & Steve's parents who have come to help me clean Steve, and those that may not be blood related, we're still family (Thank you Jeremy, Meredith, Jason, Meredith 2, Camille, & Garrett xox).
Friday, March 25, 2016
Change your perspective...change your world.
As of now everyone's heard of the glass half full or empty lesson. Some people laugh it off, "Who cares just drink it.." Some people no matter how well life goes, always sees it as empty. Some even when the cup is actually empty still see the last drop in that glass.
We all have a choice how we see life. We can choose to seek out the beauty that the world has the offer and allow it to take our breath away. We can also choose to focus on the bad that exists all around us.
Do you walk into a garden and notice the 1 dying plant before you see the hundreds of blooming beautiful flowers? Do you curse nature for allowing rain to take the petals off of trees, or do you stand outside and allow the rain and petals fall on your face?
If you choose what you see can excite you and motivate you every single day. It can just as equally discourage you and bring you down.
Some say it's so easy to see the negative, it's there right in our face. How can we miss it? Sure. Maybe it is. I'm here to tell you though, the positive is just as easy if you try.
If you're one of those who already finds the beauty out there naturally! Give yourself a high five or a hug! Keep doing it and I promise it's having a positive influence on our world. <3
If you struggle, and YOU WANT to see more of the good, I have an exercise for you. After you read this, go outside and find 5 things that are beautiful. Seriously, stay out there until you find it. Soak in the beauty and repeat this exercise everyday and add 1 a day. Until you find yourself outside in marvel of how beautiful everything really is.
It is that simple. You CAN train your mind to seek out the good, IF you want to. This doesn't mean you ignore all bad things until it comes crashing down around you, it just helps you have a better perspective while facing the bad. Yes one of my 50 plants are dying, it's okay. It doesn't mean I should give up trying to grow food, herbs, and flowers because one didn't make it. If all I noticed was that one plant, I might quit. It happens all the time.
So yes, some days bad things happen, but even then, the world has 109083408397's of really life changing, mind blowing, great things as well. Let's see more it.
We all have a choice how we see life. We can choose to seek out the beauty that the world has the offer and allow it to take our breath away. We can also choose to focus on the bad that exists all around us.
Do you walk into a garden and notice the 1 dying plant before you see the hundreds of blooming beautiful flowers? Do you curse nature for allowing rain to take the petals off of trees, or do you stand outside and allow the rain and petals fall on your face?
If you choose what you see can excite you and motivate you every single day. It can just as equally discourage you and bring you down.
Some say it's so easy to see the negative, it's there right in our face. How can we miss it? Sure. Maybe it is. I'm here to tell you though, the positive is just as easy if you try.
If you're one of those who already finds the beauty out there naturally! Give yourself a high five or a hug! Keep doing it and I promise it's having a positive influence on our world. <3
If you struggle, and YOU WANT to see more of the good, I have an exercise for you. After you read this, go outside and find 5 things that are beautiful. Seriously, stay out there until you find it. Soak in the beauty and repeat this exercise everyday and add 1 a day. Until you find yourself outside in marvel of how beautiful everything really is.
It is that simple. You CAN train your mind to seek out the good, IF you want to. This doesn't mean you ignore all bad things until it comes crashing down around you, it just helps you have a better perspective while facing the bad. Yes one of my 50 plants are dying, it's okay. It doesn't mean I should give up trying to grow food, herbs, and flowers because one didn't make it. If all I noticed was that one plant, I might quit. It happens all the time.
So yes, some days bad things happen, but even then, the world has 109083408397's of really life changing, mind blowing, great things as well. Let's see more it.
Thursday, March 24, 2016
Metta Bhavana
I've been doing some pretty awesome guided meditations lately, and the Metta Bhavana is my favorite. It means loving-kindness meditation. Some of the mantras used in these meditations have stuck with me through my days well into weeks, that I wanted to share.
I use the insight timer app for my daily meditations, that helps time my meditations as well as provides a wide variety of guided for days where I need a little more structure.
Metta Bhavana:
May I be safe from inner and outer harm.
May I be happy and peaceful.
May I be healthy and strong.
May I show loving kindness.
May you be safe from inner and outer harm.
May you be happy and peaceful.
May you be healthy and strong.
May you show loving kindness.
Something about using these mantras opens my heart to feeling peaceful, happy, healthy, and loving. I use it on days when I don't feel particularly loving or kind, I will say it with others in mind that may benefit from it, shoot I use it on the whole world regularly by saying, "May all beings be..."
If there's anything our world needs during this tumultuous time it's love and kindness. It starts with us. The more we show ourselves it, the more we shine it upon others, the further the ripple effect can go.
May all beings show loving kindness AND be shown loving kindness. <3
xo
I use the insight timer app for my daily meditations, that helps time my meditations as well as provides a wide variety of guided for days where I need a little more structure.
Metta Bhavana:
May I be safe from inner and outer harm.
May I be happy and peaceful.
May I be healthy and strong.
May I show loving kindness.
May you be safe from inner and outer harm.
May you be happy and peaceful.
May you be healthy and strong.
May you show loving kindness.
Something about using these mantras opens my heart to feeling peaceful, happy, healthy, and loving. I use it on days when I don't feel particularly loving or kind, I will say it with others in mind that may benefit from it, shoot I use it on the whole world regularly by saying, "May all beings be..."
If there's anything our world needs during this tumultuous time it's love and kindness. It starts with us. The more we show ourselves it, the more we shine it upon others, the further the ripple effect can go.
May all beings show loving kindness AND be shown loving kindness. <3
xo
Wednesday, March 23, 2016
Hey God, it's me again. Hope.
When Steve was first showing signs of progression with ALS, was when I really had to learn it's okay to ask for help. I was drowning in being a newly wed, new caregiver, trying to work, and the new realities of ALS. It was all hitting us at once, and I realized quickly I couldn't do it all.
The idea of me not being able to do it all, made me feel not good enough. Thankfully our beautiful friends had a "come to Jesus" chat with me and sat me down. Through tears I listened to them talk about how capable I was but how it was okay to need help. How them helping was a blessing to them and not a burden. They opened my eyes to when people ask, "How can I help?" They really want to help. It's not just a blessing to me, but to them as well.
I've grown a bit more accustomed to accepting that just because I need help doesn't mean I'm failing at anything, in fact it's a strength to realize and be able to accept help with grace.
However, I've become so used to needing help in some areas, that I've become so stubborn against asking for help in others.
For instance with God. God's pulled some epic miracles with Steve, as the complications of life with ALS has tried to take him from me so many times. God's been amazing at using Steve for making people like me have faith again. However, I found myself not feeling comfortable to ask him for anything else.
Why would I ask God to help me handle stress better? I mean I should just freaking handle it, and I began living life like it was my job to HANDLE everything about me without asking for help from God or anyone else. I need so much help with Steve and our aging house these days that anything else seems excessive.
Recently I began praying again. Not really something I would do unless it was for Steve or another family member, or if my mom was doing her "Let's pray," that she so frequently does. I began praying for energy to do all that I intend/hope to do. I began asking for focus, and strength, and patience.
To my surprise the already busy miracle making God, did have time for me. After I ask, the answers almost always show up. From a book recommendation from a friend that same afternoon, to a quote I read when I first open my instagram. It's amazing when opening yourself up to help, how you find yourself growing.
So today I'm here to remind you---it's okay to ask for help. Whether it be a friend or God. In fact it's more than okay. It's life changing.
xo.
The idea of me not being able to do it all, made me feel not good enough. Thankfully our beautiful friends had a "come to Jesus" chat with me and sat me down. Through tears I listened to them talk about how capable I was but how it was okay to need help. How them helping was a blessing to them and not a burden. They opened my eyes to when people ask, "How can I help?" They really want to help. It's not just a blessing to me, but to them as well.
I've grown a bit more accustomed to accepting that just because I need help doesn't mean I'm failing at anything, in fact it's a strength to realize and be able to accept help with grace.
However, I've become so used to needing help in some areas, that I've become so stubborn against asking for help in others.
For instance with God. God's pulled some epic miracles with Steve, as the complications of life with ALS has tried to take him from me so many times. God's been amazing at using Steve for making people like me have faith again. However, I found myself not feeling comfortable to ask him for anything else.
Why would I ask God to help me handle stress better? I mean I should just freaking handle it, and I began living life like it was my job to HANDLE everything about me without asking for help from God or anyone else. I need so much help with Steve and our aging house these days that anything else seems excessive.
Recently I began praying again. Not really something I would do unless it was for Steve or another family member, or if my mom was doing her "Let's pray," that she so frequently does. I began praying for energy to do all that I intend/hope to do. I began asking for focus, and strength, and patience.
To my surprise the already busy miracle making God, did have time for me. After I ask, the answers almost always show up. From a book recommendation from a friend that same afternoon, to a quote I read when I first open my instagram. It's amazing when opening yourself up to help, how you find yourself growing.
So today I'm here to remind you---it's okay to ask for help. Whether it be a friend or God. In fact it's more than okay. It's life changing.
xo.
Tuesday, March 22, 2016
Silence the inner chatter
A typical day in my mind goes something like this, as I'm rolling out the yoga mat, "I should do yoga twice a day, at least start meditating 3 times a day...Wonder how tight my hamstrings are today." Pause breathe let it go. I make it through the practice with only 3 interruptions from the puppies where I totally give in and let them love on me.
Time to meditate. Some days I'm in the zen, other days my mind has lots of noise "Okay so I have to wash Steve's pads today before his bath, and remember this time to put it in the dryer, I have to package those malas I was supposed to mail out last week, I have to start our taxes..." Bell rings as a reminder to come back to the present moment, I shake my head like I'm shaking the thoughts out of my mind, like I would with water in my hair. Deep breath, and, "Don't forget you need to take your test, oh and that chapter in the book still needs work...wonder what I will blog about..." Shaking my head again I sigh as the bell rings.
Burning sage I take a big inhale to clear the cobwebs which is interrupted by the phone ringing, talking to the pharmacy, "Why does Steve still have this lung infection?" "What new tincture can I try?" I wonder how my herbs are doing?" "Oh I better go water my plants."
Off to water the plants, as I'm halfway done telling them my "I love yous...."
Interrupted by Steve's alarm, that sounds much like a car, As I'm walking back to his room, "Oh I need to figure out why the VW won't start. Why have a car that just sits in the driveway?" Steve's up time to do his morning routine. Suction, breathing treatment, trache care, brush teeth, wash face, "what am I forgetting?" "How do I still forget things, I've been doing this how long?" Oh yeah, empty pee, wash areas of skin that need washed daily, meds, rearrange arms after a nights sleep...Steve types, "Don't forget to call comcast about the TV out there, and follow up with the rat guy, and call pharmacy for refill, and find out where tax forms all are, you're running out of time."
I walk out of the room, and suddenly I used up all my brain space, I know I have a list of 100 things to do but now there is too much chatter for me to be even able to focus on any task. I'm ready for sleep and it's only 11 o'clock.
Does this sound familiar?
This is a challenge, I'm sure many others face daily. The inner chatter has left me exhausted, overwhelmed, and unable to focus. What now? How am I supposed to accomplish anything?
Let me preface this with, I AM STILL practicing this. I in no way have control of my mind 100% of the time, but I'm making progress.
How you ask?
When the chatter becomes overwhelming I stop everything. I grab my trusty journal and write it all out. The mundane tasks, the dreams, ideas, etc. As I stop and sit and write it out, slowly the chatter of to do's turn into beautiful ideas, and inspirations.
I then close my eyes and take 5 minutes to sit and breathe and to clear space for all I have to accomplish. I then look at what I wrote down and prioritize. What MUST get done today. Okay I circle things, and then include a few what extra would I like to accomplish, and circle them. I then go at it one thing at a time. I have a mantra, Do what you can, and really do it, be there, and let the rest go.
Most importantly, I practice to only be working on that task. Not to be thinking of the 15 other things I circled for that day. I often say, "It's there in that journal to remember for me, I don't need to use this brain space right now," and come back to whatever it is I'm doing.
It's a practice and some days I do so well at clearing the inner chatter, I celebrate the control I have on my mind. The next day I'm eating humble pie and reminded that I still have work to do.
As you practice removing the inner chatter, much like practicing yoga, you see your mind stretch. You find it easier to come back to the task (as long as you don't let the negative self talk derail you). If you're like me where your mind is constantly going 100% of the time, try to have moments where you come in silence and work it out. Don't be hard on yourself, and keep practicing. Because in the end, it's our practice that shapes our life.
Monday, March 21, 2016
vulnerability
It takes a certain vulnerability to share your lives with others. You are putting your inner most thoughts, and personal events out there for people to see; and you don't always know how people will receive it.
I used to cringe when feeling vulnerable, when someone would ask me a personal question, or even sharing struggles with friends; let alone the internet world. I wish I had a recipe for teaching people how to accept the vulnerable moments in their lives, because once I did things shifted for me in amazing ways.
Opening yourself doesn't just allow room for negative responses, which yes may happen, it opens you up to some of the most positive experiences you will ever have. Your friendships will deepen because they know they are getting the real you. People will relate to you, because they too have these same feelings!
When Steve & I first made the decision on sharing our lives, I used to feel pressured to always say or do the right thing. It was overwhelming and would lead me hiding in a corner and not wanting to share our lives. Even still some days I'm overwhelmed and take breaks from it; which is okay. Because taking breaks is allowing me to be in tuned to my needs.
However, since sharing our thoughts and feelings and including everyone on the good and bad, people then felt like they could relate to us more, and the connections with our followers deepened. Some days I sit uninspired and lay around having movie days with Steve, and some days I say the wrong thing, some days I can't do anything right. It's all okay and I feel better with sharing the vulnerable moments, because I want everyone to know that these moments will happen; then you get through them and feel more inspired on the other side.
So today as I share a vulnerable thought with you all, I hope it helps you find comfort in your moments.
Steve has gotten to where he no longer feels comfortable leaving the house. Which, is totally okay and his choice. It's a beautiful thing we have such a cozy home full of lots of magic and a place he feels safe. I however, find myself feeling like I've failed him. If maybe I had done more stretches it wouldn't be so painful to move, maybe if I could finally tune into where/when his anxiety is triggered I could stop it, etc.
My mind is a beautiful place full of lots of ideas that have blossomed into beautiful things, but it's also full of the I'm not good enough's. That (I've shared before) I am working on.
So today I am thankful for the beautiful friendships we have developed and their understanding of our situation. I'm thankful that I feel okay being vulnerable and I know the not good enough feelings will pass. I know that Steve and I will continue to make the most of our days and we are blessed to have so many people to help us in that!
So with vulnerability I've opened myself up. What can you experience if you allow it?
Sunday, March 20, 2016
Spring
Like nature, winter slowly forced me to hibernate and rest. It forced me indoors and to slow down. It forced me to dig deep for warmth and light. Like nature, winter helps me shed off a few layers that needed to die.
Then comes spring! Where every bloom reawakens another piece in my soul, that was hidden for the cold long months. It restores hope and vibrancy. Suddenly, I feel full of energy much like a bloom opening up to the sun. I feel the earths energy flowing in me and giving me what I need.
Spring is a great time to allow what is buried deep inside blossom! We all have seeds, that just need a little sunshine (light) shining on them and a little love.
What will you let bloom this spring? New project ideas, or picking up ones you set down for the winter? Allow the colors popping out of the ground and dancing in the winds inspire you.
Take sometime today to plan how you want to bloom this spring!
How do I want to?
In many ways. Like the hundreds of different flowers that fill my eyes with joy, so does the hundreds of ideas growing inside of me. One is to become more committed to my passions. Do more: yoga, meditating, studying, Ayurveda, Herbs, weaving, creating, painting, writing. To let the seeds to blossom even grander than I could imagine! Then open myself up to what else is to come. I'll be spending an hour this afternoon in the flowers allowing the ideas to pop up!
Nature is a powerful force, displaying her strengths all around-as are you. It's time to bloom!
Saturday, March 19, 2016
Hashtag I am here FOR Steve.
At some point in our lives we will all learn the inevitability of disappointment. It will happen to you. It happens to everyone. Plans fall through, accidents, illness, etc.
I had a teacher in undergrad, who used to say, "You can tell a lot about a person by the way they handle lives disappointing moments." It sounds like a weird thing to be thankful for, but I'm thankful I learned that disappointments WILL happen early on, and my mother always helped us learn to turn that disappointment into something good.
Because life with ALS, disappointments come a little more frequent, so we are turning our today's disappointment into something good, and we need y'alls participation. :)
So if you know Steve and I at all, you know we used to enjoy being out and about in many ways. Some of our favorites were of course live music in all forms, sporting events (that was totally for Steve ;)), Steve's art shows, events thrown by our amazing friends, the river, traveling, etc. We just loved being around others and in the hustle and bustle.
Our outings have obviously decreased as Steve's progressed to currently we haven't been out of the house together except to go to the hospital. Steve has an art show tonight at ABV gallery, 7-11 where you can see all his incredible paintings on display. Steve's art shows in the past have been some of my favorite outings. I would love to see the joy on Steve's face as he watched people be moved by art he created with his wheels, and how inspired everyone was by Steve's drive to make beauty out of adversity.
We have been looking forward to going, until we realized we aren't. Steve's had a cough the past week, much like he gets every change of season. Unfortunately he was up coughing last night, so much that he had a full blown panic attack. Needless to say, a night of no sleep and that kind of trauma on the body has left him feeling not well enough to go.
So in an effort to take a disappointing situation and turn it into a good one, I am asking that everyone who goes tonight; take a picture and when you share it include hashtag #IamhereFORSteve as you are all there for him, since he can't be.
Why stop there, if you are ever at a concert, festival, at the beach, sporting event (especially UGA), traveling, etc; and you think of Steve, take a photo and use the hashtag. I know him feeling like he is at all these places with you, helps him.
So today I will be making our day at home together special, we will be skyping with everyone at the show, and we will be following on social media the hashtag, so we will be there with you!
Even in life's disappointments there's still beauty. In this case it's that technology can help us feel connected to those supporting us. <3
#IamhereFORSteve
xo
I had a teacher in undergrad, who used to say, "You can tell a lot about a person by the way they handle lives disappointing moments." It sounds like a weird thing to be thankful for, but I'm thankful I learned that disappointments WILL happen early on, and my mother always helped us learn to turn that disappointment into something good.
Because life with ALS, disappointments come a little more frequent, so we are turning our today's disappointment into something good, and we need y'alls participation. :)
So if you know Steve and I at all, you know we used to enjoy being out and about in many ways. Some of our favorites were of course live music in all forms, sporting events (that was totally for Steve ;)), Steve's art shows, events thrown by our amazing friends, the river, traveling, etc. We just loved being around others and in the hustle and bustle.
Our outings have obviously decreased as Steve's progressed to currently we haven't been out of the house together except to go to the hospital. Steve has an art show tonight at ABV gallery, 7-11 where you can see all his incredible paintings on display. Steve's art shows in the past have been some of my favorite outings. I would love to see the joy on Steve's face as he watched people be moved by art he created with his wheels, and how inspired everyone was by Steve's drive to make beauty out of adversity.
We have been looking forward to going, until we realized we aren't. Steve's had a cough the past week, much like he gets every change of season. Unfortunately he was up coughing last night, so much that he had a full blown panic attack. Needless to say, a night of no sleep and that kind of trauma on the body has left him feeling not well enough to go.
So in an effort to take a disappointing situation and turn it into a good one, I am asking that everyone who goes tonight; take a picture and when you share it include hashtag #IamhereFORSteve as you are all there for him, since he can't be.
Why stop there, if you are ever at a concert, festival, at the beach, sporting event (especially UGA), traveling, etc; and you think of Steve, take a photo and use the hashtag. I know him feeling like he is at all these places with you, helps him.
So today I will be making our day at home together special, we will be skyping with everyone at the show, and we will be following on social media the hashtag, so we will be there with you!
Even in life's disappointments there's still beauty. In this case it's that technology can help us feel connected to those supporting us. <3
#IamhereFORSteve
xo
Friday, March 18, 2016
Are you really that positive Hope?
I get asked a lot from those on the social media world, "Are you really that positive Hope?"
The answer is mostly yes. You see, I like everyone else, experience a wide ray of emotions through my days. I experience the angers and frustrations life offers, and yes I feel sadness often. I acknowledge all emotions because how can you move past them without acknowledging them.
However, I don't set up camp there, and this is important. I noticed about 3 years ago, that when I was feeling weighed down from the burdens that come with ALS, and sitting for long periods in the frustrations or sadness Steve would get sick. The more aware I became of my emotions the more I could see the direct effects it would have on Steve.
So, I decided that in order to be the best caregiver I can for Steve, I was going to find ways to stop setting up camp in the negative. It was hard, and if you knew us you saw the struggle. This was before Steve & I shared everything openly on social media, so if you were following us from the outside you may not have seen the struggle.
It was there, and then I found yoga. It not only helped me to become more present of the moment and to actually face what our days had, it helped me become more accepting. I would be in total denial of Steve's progression of ALS, as would he; and yoga helped me get a reality check while also providing me skills to deal with the reality.
People my whole life have told me, that I have a gift of finding the good in the bad, and it sort of amplified after I started implementing a practice into my daily life. Now it's how I end my day. I recognize the hard to face realities, feel those emotions for a minute, and then search for the good in it. Truth be told, 100% of the time I find it. It's always there, it just takes a different perspective.
Learning to find more good in our situation, also opened me up to more good in myself. I didn't think I had any talents, until I just started to paint for a release, and then slowly my soul opened up to creating in all realms.
Today it's true, on days where I'm off, because yet again, I'm human and I have them; Steve has bad days too. Knowing this connection we have keeps me very mindful of choosing the positive. Because I chose this life with Steve, I choose to make it the best I can. I can't change ALS or the toll it has taken (and will continue to do so) on Steve's body, but I can choose how we live our lives.
So, I choose positive. It's not always easy, but on days that are really hard, and Steve's looking to me out of eyes full of tears for that hope; it's worth it. To be able to provide Steve with that extra boost to fight this disease. It's always worth it.
The answer is mostly yes. You see, I like everyone else, experience a wide ray of emotions through my days. I experience the angers and frustrations life offers, and yes I feel sadness often. I acknowledge all emotions because how can you move past them without acknowledging them.
However, I don't set up camp there, and this is important. I noticed about 3 years ago, that when I was feeling weighed down from the burdens that come with ALS, and sitting for long periods in the frustrations or sadness Steve would get sick. The more aware I became of my emotions the more I could see the direct effects it would have on Steve.
So, I decided that in order to be the best caregiver I can for Steve, I was going to find ways to stop setting up camp in the negative. It was hard, and if you knew us you saw the struggle. This was before Steve & I shared everything openly on social media, so if you were following us from the outside you may not have seen the struggle.
It was there, and then I found yoga. It not only helped me to become more present of the moment and to actually face what our days had, it helped me become more accepting. I would be in total denial of Steve's progression of ALS, as would he; and yoga helped me get a reality check while also providing me skills to deal with the reality.
People my whole life have told me, that I have a gift of finding the good in the bad, and it sort of amplified after I started implementing a practice into my daily life. Now it's how I end my day. I recognize the hard to face realities, feel those emotions for a minute, and then search for the good in it. Truth be told, 100% of the time I find it. It's always there, it just takes a different perspective.
Learning to find more good in our situation, also opened me up to more good in myself. I didn't think I had any talents, until I just started to paint for a release, and then slowly my soul opened up to creating in all realms.
Today it's true, on days where I'm off, because yet again, I'm human and I have them; Steve has bad days too. Knowing this connection we have keeps me very mindful of choosing the positive. Because I chose this life with Steve, I choose to make it the best I can. I can't change ALS or the toll it has taken (and will continue to do so) on Steve's body, but I can choose how we live our lives.
So, I choose positive. It's not always easy, but on days that are really hard, and Steve's looking to me out of eyes full of tears for that hope; it's worth it. To be able to provide Steve with that extra boost to fight this disease. It's always worth it.
Thursday, March 17, 2016
Rid the negative self talk
Often, I've tried to stop myself from gossiping, or judging others. I would find myself thinking negatively about someone and catch myself, or I would be with a group of friends, and catch myself gossiping about someone that wronged me, or simply annoyed me. Realizing I didn't want to be putting that energy out there, I've made an effort to rid the judgment gossip talk.
However, never did it dawn on me to stop that sort of talk about myself. I just kept right on in, with the, "You're so spacey." "No wonder you messed that up, you hot mess." "Don't mind me just loosing my mind today." "Oh you look like a mess!" "Ugh, I suck" (this one happened at least 100 times a day when I would forget something). I could keep going but you get the point.
It's not enough to just stop the negative talk about others, you have to stop it with yourself. How we talk to ourselves influences our lives more than we realize.
I started to pay attention to how I was speaking to myself and how my days would go.
On days where I started the day saying, "I'm so spacey today, I can't focus on anything and I doubt I'll get anything done, I'm just an idiot." I would have spacey days where I really couldn't focus on anything. I would get frustrated at everyone mostly myself, and the negative self talk just brought me lower and lower.
Then on days when I would start the day saying, "I'm amazing and capable of conquering whatever life throws at me today. I'm strong, focused, and powerful." I would get so much done, with ease and focus. I would enjoy the moments I was in and really felt capable and strong.
Why do we work on how we talk to others, but not on self talk? I'm pleading with you, if you haven't started to try to talk nicer to yourself, do so now! Watch how a little self love can completely change our lives. The positive affirmations you say to yourself can change based on your needs that morning, be creative with it; but try it!
Some great affirmations to try:
I'm so intelligent, I'll change the world with my mind!
I am strong and capable, and will do great at everything I set out to do today.
I am focused and can accomplish everything I want with ease.
I am beautiful damnit!
I am love, and will show love to everyone I come in contact with today; especially myself.
I am talented, and today I will use my talents to add light to the world!
I am passionate and with my passions I could cure illnesses using my voice.
I am awesome. :)
BECAUSE YOU ARE.
I love you all. xo
However, never did it dawn on me to stop that sort of talk about myself. I just kept right on in, with the, "You're so spacey." "No wonder you messed that up, you hot mess." "Don't mind me just loosing my mind today." "Oh you look like a mess!" "Ugh, I suck" (this one happened at least 100 times a day when I would forget something). I could keep going but you get the point.
It's not enough to just stop the negative talk about others, you have to stop it with yourself. How we talk to ourselves influences our lives more than we realize.
I started to pay attention to how I was speaking to myself and how my days would go.
On days where I started the day saying, "I'm so spacey today, I can't focus on anything and I doubt I'll get anything done, I'm just an idiot." I would have spacey days where I really couldn't focus on anything. I would get frustrated at everyone mostly myself, and the negative self talk just brought me lower and lower.
Then on days when I would start the day saying, "I'm amazing and capable of conquering whatever life throws at me today. I'm strong, focused, and powerful." I would get so much done, with ease and focus. I would enjoy the moments I was in and really felt capable and strong.
Why do we work on how we talk to others, but not on self talk? I'm pleading with you, if you haven't started to try to talk nicer to yourself, do so now! Watch how a little self love can completely change our lives. The positive affirmations you say to yourself can change based on your needs that morning, be creative with it; but try it!
Some great affirmations to try:
I'm so intelligent, I'll change the world with my mind!
I am strong and capable, and will do great at everything I set out to do today.
I am focused and can accomplish everything I want with ease.
I am beautiful damnit!
I am love, and will show love to everyone I come in contact with today; especially myself.
I am talented, and today I will use my talents to add light to the world!
I am passionate and with my passions I could cure illnesses using my voice.
I am awesome. :)
BECAUSE YOU ARE.
I love you all. xo
Wednesday, March 16, 2016
Learning to stay in the moment...it's life changing.
The more into my yoga/Ayurveda practice I go, the more self aware I become; which helps me notice ways in which I, myself, am bringing negative energy, to myself.
When I am too focused on my to do list, as it's usually enough to fill an entire week for one day, I find myself on edge. Constantly feeling pressure like there's not enough time in the day. Feeling like I can't keep up. I will experience anxiety, I will snap on you if you interrupt me (sorry Steve), and all in all I am not really that productive. Most of my energy is spent worrying about the next 5 things I need to do that I'm not able to do the thing I'm working on very well.
The other 70% of my life when I'm truly in the moment, I'm patient, focused, in the flow, happy, fun, loving, compassionate, all good adjectives, etc... Ever notice when you are truly living and feeling the present moment how all of a sudden you are overwhelmed with gratitude and peace. It's a wonderful feeling.
Staying in the moment takes practice. I have to work on it everyday. It takes being aware of your mindset. Even yesterday, trying to get my listing done, I found myself sighing and huffing when I would be interrupted by Steve. Mostly everyone that follows us often looks at me as an angel, which is encouraging. :) However, the truth is I'm human like everyone else, and I have to catch myself.
Meditation has taught me a trick to come back to the moment. If I start to notice the extra jittery Hope kicking in, I stop what I'm doing, and take just 5 minutes to sit in silence. When it's nice outside I especially like to do it outside. Sometimes I'll do it with Steve, if I'm getting impatient with him, so he can see me take the effort to come back to the moment.
I love taking care of Steve, he IS my number 1 priority, and I love it even more when I'm really there in that moment enjoying his presence and laughing with him while we are doing one of the hundreds of things we do in a day for his care. He deserves me, being me, there with him. Not the me, with my mind on the 100 things I may or may not get to that day.
How often are you living in the list mode vs the present? Are you aware of it? If you find yourself feeling that weight of your to do list, take a break, and allow yourself to focus on THIS VERY moment, because the reality is that's all there is. It's all that matters. Is this moment.
When I am too focused on my to do list, as it's usually enough to fill an entire week for one day, I find myself on edge. Constantly feeling pressure like there's not enough time in the day. Feeling like I can't keep up. I will experience anxiety, I will snap on you if you interrupt me (sorry Steve), and all in all I am not really that productive. Most of my energy is spent worrying about the next 5 things I need to do that I'm not able to do the thing I'm working on very well.
The other 70% of my life when I'm truly in the moment, I'm patient, focused, in the flow, happy, fun, loving, compassionate, all good adjectives, etc... Ever notice when you are truly living and feeling the present moment how all of a sudden you are overwhelmed with gratitude and peace. It's a wonderful feeling.
Staying in the moment takes practice. I have to work on it everyday. It takes being aware of your mindset. Even yesterday, trying to get my listing done, I found myself sighing and huffing when I would be interrupted by Steve. Mostly everyone that follows us often looks at me as an angel, which is encouraging. :) However, the truth is I'm human like everyone else, and I have to catch myself.
Meditation has taught me a trick to come back to the moment. If I start to notice the extra jittery Hope kicking in, I stop what I'm doing, and take just 5 minutes to sit in silence. When it's nice outside I especially like to do it outside. Sometimes I'll do it with Steve, if I'm getting impatient with him, so he can see me take the effort to come back to the moment.
I love taking care of Steve, he IS my number 1 priority, and I love it even more when I'm really there in that moment enjoying his presence and laughing with him while we are doing one of the hundreds of things we do in a day for his care. He deserves me, being me, there with him. Not the me, with my mind on the 100 things I may or may not get to that day.
How often are you living in the list mode vs the present? Are you aware of it? If you find yourself feeling that weight of your to do list, take a break, and allow yourself to focus on THIS VERY moment, because the reality is that's all there is. It's all that matters. Is this moment.
Tuesday, March 15, 2016
Creating.
This afternoon i'll be doing a new listing for Hopie Hippie, as I took the first part of the year off to get Steve & I healthy.
It feels good to be creating more regularly again and to see people get joy, peace, love, etc from my creations.
As a creator I see first hand the comparisons that happen. The, "Oh this person makes these too, you should check her out, see how you can improve yours..." These comparisons seem innocent, until you say it to someone who already feels inadequate because they don't feel like they can compete in this vast creative world.
I'm here to tell you no matter how much your creations look or don't look like someone else, you keep making from the heart. As long as it comes from a place of love and something deep in yourself, you do you.
Your creations are a piece of you, they are special, and they are enough. You don't need to compare your work to anyone else. As long as you are putting in YOUR own thoughts and energy to the creation that's enough.
I hope one day instead of holding yourself to a standard based on how someone else does something, we ALL learn to hold ourselves to OUR VERY OWN standards.
My standard is this: Make something that makes me feel something. That invokes an emotional response and that I can feel the love I put into it. Then, put it out in the world, knowing someone out there will see it and feel connected to it, and buy it. It's not about the money; nor is it about, does my so and so creation look better than there so and so. It's, did my creation add some light to their lives? Did it make them happy? Do they feel the love? If so, then my creation has reached the right person.
Aside from taking care of Steve, creating new things that help add light, love, color, zest, happiness, and positive energy to the world, brings me belly fulls of happiness. That's what it's all about. :) *clap clap*
It feels good to be creating more regularly again and to see people get joy, peace, love, etc from my creations.
As a creator I see first hand the comparisons that happen. The, "Oh this person makes these too, you should check her out, see how you can improve yours..." These comparisons seem innocent, until you say it to someone who already feels inadequate because they don't feel like they can compete in this vast creative world.
I'm here to tell you no matter how much your creations look or don't look like someone else, you keep making from the heart. As long as it comes from a place of love and something deep in yourself, you do you.
Your creations are a piece of you, they are special, and they are enough. You don't need to compare your work to anyone else. As long as you are putting in YOUR own thoughts and energy to the creation that's enough.
I hope one day instead of holding yourself to a standard based on how someone else does something, we ALL learn to hold ourselves to OUR VERY OWN standards.
My standard is this: Make something that makes me feel something. That invokes an emotional response and that I can feel the love I put into it. Then, put it out in the world, knowing someone out there will see it and feel connected to it, and buy it. It's not about the money; nor is it about, does my so and so creation look better than there so and so. It's, did my creation add some light to their lives? Did it make them happy? Do they feel the love? If so, then my creation has reached the right person.
Aside from taking care of Steve, creating new things that help add light, love, color, zest, happiness, and positive energy to the world, brings me belly fulls of happiness. That's what it's all about. :) *clap clap*
Monday, March 14, 2016
mornings
I used to dread mornings. I would hit my snooze button as many times as I could to not get out of bed. I would then start my mornings rushed and dreadful, with very little positive going into my day. Usually swinging by Starbucks on my way to work, and cursing caffeine for not giving me the pick me up I needed.
Then as I became full time caregiver for Steve, I still didn't like mornings, and would sleep until 10, wake up feeling groggy with little energy, and with the same sense of, "ugh how am I going to get through my day."
I wrote previously about the lessons I've gained from my Ayurveda class, which is coming to an end. Thankfully my amazing teacher Anna Apotheca, is going to be letting me continue on in her classes to the next level, so I can continue to learn and allow it to expand my life.
My favorite part that I've implemented was to have a morning ritual. All of a sudden I'm a morning person, I love being awake by 7:30, and to have several hours to set the tone for my day. So I get up now; do yoga, meditate, then drink my lemon ginger water, golden milk, I spend sometime outside usually with my bare feet on the earth doing some "earthing", I journal, then blog (most recent addition), I eat breakfast, I wash up, and then study/read until Steve wakes up.
Because once Steve wakes up my day does revolve around him. Obviously we both work on our separate projects but if he needs me, I'm there in 15 seconds (we've timed it :)) So my mornings help me greet Steve with a smile, and help me address his needs, and accomplish the 100 things I set out to do each day with the best attitude possible.
If you find yourself dreading mornings, or find your days starting so negative it's hard to find any positive in your day, I highly suggest, taking some time for a morning routine.
Make it your own. Do what feels best for you: pray, stretch, spend time outside, WHATEVER you can do to help your day start in a positive.
Start as small as you want, even if you give yourself 15 minutes to just sit in silence and set intentions for the day to go smoothly, it will vastly change your life. I know it will, because it has mine.
Sunday, March 13, 2016
wife vs caregiver
In yesterday's blog I talked about removing my ego from taking care of Steve, and today I want to touch on the balance of wife vs caregiver.
Someday's it's more important that I'm his caregiver and less important that I'm his wife; and the struggle to go back to wifie is sometimes a challenge.
Some of the intimacy that once happened as husband and wife, are no longer there. It hurts him to lay with him or hug him too hard, can't really "make out" when someone has lock jaw and can barely open his mouth, and life with a full time catheter makes the hanky a rare and sterile procedure.
While, the need to be caregiver increases; suctioning, moving, wound care, medications, picc line care, feedings, antibiotics, cutting fingernails, toenails, wiping nose, brushing teeth, wiping butt....
The balance then leans towards more caregiver less wife, naturally. The one thing that brings the 2 together is love. I'm his wife because I love him, just as I'm his caregiver because I love him. So love helps me readjust my perspective to find ways to still be equal parts wife and caregiver.
Kissing may be different, cuddles may be different, hugs, hanky, etc...but they can still exist. Showing the love of a wife can still happen even if it's vastly changed from 4.5 years ago. They are still there. Just in different forms, and that is a beautiful thing.
I'm thankful that Steve shows me love and appreciation as a wife and caregiver and that I'm able to find the balance in this wild world of ours. I'm thankful that although it's vastly different; that we still have our special times, and that nothing, not even ALS can take that away from us.
Someday's it's more important that I'm his caregiver and less important that I'm his wife; and the struggle to go back to wifie is sometimes a challenge.
Some of the intimacy that once happened as husband and wife, are no longer there. It hurts him to lay with him or hug him too hard, can't really "make out" when someone has lock jaw and can barely open his mouth, and life with a full time catheter makes the hanky a rare and sterile procedure.
While, the need to be caregiver increases; suctioning, moving, wound care, medications, picc line care, feedings, antibiotics, cutting fingernails, toenails, wiping nose, brushing teeth, wiping butt....
The balance then leans towards more caregiver less wife, naturally. The one thing that brings the 2 together is love. I'm his wife because I love him, just as I'm his caregiver because I love him. So love helps me readjust my perspective to find ways to still be equal parts wife and caregiver.
Kissing may be different, cuddles may be different, hugs, hanky, etc...but they can still exist. Showing the love of a wife can still happen even if it's vastly changed from 4.5 years ago. They are still there. Just in different forms, and that is a beautiful thing.
I'm thankful that Steve shows me love and appreciation as a wife and caregiver and that I'm able to find the balance in this wild world of ours. I'm thankful that although it's vastly different; that we still have our special times, and that nothing, not even ALS can take that away from us.
Saturday, March 12, 2016
It's not about me.
Choosing to be a caregiver for someone will transform you in ways you never imagined.
One of those is understanding that this life, is really not about you.
I used to get frustrated at Steve when he wouldn't do something, I as a caregiver thought he should (ie: wash hair, bend knees, range of motion, etc). If you saw our documentary, you saw, I would equally get frustrated at Steve's desire to take medication for his undeniable pain.
I would get frustrated because I care so damn much about his well being that I want to do everything in my power to keep him as healthy as I possibly can. However, sometimes it's more than that. Sometimes I would get frustrated because other caregivers would make their comments to me, "Oh well my so and so doesn't take pain medicine." "My so and so doesn't stay in bed all day we always get them up." "My so and so can bend their knees..."
You get the point. I would allow the other people's comments on how they care for their person, make me feel like I wasn't doing a good enough job. I would get upset at myself and of course then get frustrated at Steve when he wouldn't let me do something I felt pressured to do.
Then one day Steve said something to me that helped me let go of the frustrations and the worry of what everyone else thought. He had wrote me a long message thanking me for taking care of him, and a sentence stuck with me forever, "Thanks for allowing me to live the life I choose to live with this awful disease and for standing by me every step of the way."
Even my stubborn ego can't deny that it's a beautiful thing to be able to do something for someone else; and even more beautiful to see a man who has lost control of the ability to do most things, still choose the life he wants to live.
See it's not about me, or what I think he should be doing. It's most certainly not about what others on the outside think we should be doing. It's about Steve. Always.
The reasons we can get along so well, and have so much joy in our lives; is the respect, love, and undestanding we have for one another. Steve will do certain things like let me wash his hair, do wound care, etc; because he wants to live and he knows as much as he doesn't want to, he must. The others, it's his choice. Because deep down how beautiful is it, that he still has that. His own choices.
ALS will never take that away, and I'm thankful for that.
One of those is understanding that this life, is really not about you.
I used to get frustrated at Steve when he wouldn't do something, I as a caregiver thought he should (ie: wash hair, bend knees, range of motion, etc). If you saw our documentary, you saw, I would equally get frustrated at Steve's desire to take medication for his undeniable pain.
I would get frustrated because I care so damn much about his well being that I want to do everything in my power to keep him as healthy as I possibly can. However, sometimes it's more than that. Sometimes I would get frustrated because other caregivers would make their comments to me, "Oh well my so and so doesn't take pain medicine." "My so and so doesn't stay in bed all day we always get them up." "My so and so can bend their knees..."
You get the point. I would allow the other people's comments on how they care for their person, make me feel like I wasn't doing a good enough job. I would get upset at myself and of course then get frustrated at Steve when he wouldn't let me do something I felt pressured to do.
Then one day Steve said something to me that helped me let go of the frustrations and the worry of what everyone else thought. He had wrote me a long message thanking me for taking care of him, and a sentence stuck with me forever, "Thanks for allowing me to live the life I choose to live with this awful disease and for standing by me every step of the way."
Even my stubborn ego can't deny that it's a beautiful thing to be able to do something for someone else; and even more beautiful to see a man who has lost control of the ability to do most things, still choose the life he wants to live.
See it's not about me, or what I think he should be doing. It's most certainly not about what others on the outside think we should be doing. It's about Steve. Always.
The reasons we can get along so well, and have so much joy in our lives; is the respect, love, and undestanding we have for one another. Steve will do certain things like let me wash his hair, do wound care, etc; because he wants to live and he knows as much as he doesn't want to, he must. The others, it's his choice. Because deep down how beautiful is it, that he still has that. His own choices.
ALS will never take that away, and I'm thankful for that.
Friday, March 11, 2016
Eliminate Hate
Last night laying in bed, as I was drifting off to sleep I had this thought.
I wonder if anyone else logs onto Facebook and sees someone they were just thinking about pop up on your timeline, and think, 'cool on me to have a connection with the universe through Facebook?' Then I will look at this persons page for a minute, usually until something else distracts my puppy brain, and then I'm on to the next thing. Then as I began to wonder about this, I realized that it doesn't actually mean I connected with this person, although, in my mind I did. I read their posts saw some pictures of their puppies or kids, and then carried on. Really though it's not connecting unless we actually interact with the person....I will work on that I think...
Then my thought gets interrupted just as I'm thinking about the love/hate relationship I have with facebook, by both of our guest bedroom doors popping open. I laugh and think, hmm more signs from the universe, what could it be? I always check Steve first, and once I saw he was okay I was reminded of an interaction with my oldest nephew this weekend. He's wise beyond his years and a very special boy (I'm not just biased, it's true):)
We were getting ready to go visit Linn Run State Park, my favorite place to visit when I'm in Pennsylvania, and as we are bundling up to get ready, I casually say, "I really hate the cold weather."
To which he quickly responds, "We aren't supposed to say we hate things, Aunt Hope."
I look at him and smile, and again my puppy brain went somewhere else without thinking much about the interaction.
So last night I sat and thought, "It's too easy to say I hate something." It shouldn't be that easy. In fact I shouldn't use the word in my vocabulary at all, because hate just breeds more hate. So hating the cold just makes me miserable and focus on all the misery about it. You know what, that whole trip to Linn Run, I didn't notice the cold one bit. In fact I enjoyed every minute about the experience, all because my nephew casually reminded me to eliminate hate.
How are your words influencing your life? It's simple to not see it, but the mindful elimination of the word can be pretty powerful. I plan to work everyday at eliminating the word hate from my vocabulary. Will you join me?
More love. No more hate. <3
Thursday, March 10, 2016
Ideas
I'm an idea person. On an average day at least 20 ideas float through my mind. Some great game changing ideas and some eh, not so much. However, allowing the ideas to flow have been the start of some amazing projects in my life.
I recently had someone gently suggest to me, "Less ideas, more focus." I could see where they were coming from and it totally rattled me. Am I too flaky? All these ideas and not enough follow through? Do people see me as just a wild card. She'll one day have something that sticks?
Feeling totally discouraged I went to my trusty adviser (Steve :)), and asked what he thought. He said without skipping a beat, "You're an idea person, and that's what makes you special. Don't allow someone who doesn't understand you stop you, from being you."
That's why he's my adviser, you see. I come to him with every wild idea, and he always tells me to pursue it with the rare exception of the idea being to big for my breeches. He encourages me to pursue everything with equal measure, and is there to catch me when those ideas flop, and to keep pushing me when I need the extra motivation.
The beauty of having someone tell you to run with your wild ideas, is that some of those ideas blossom into really amazing things. Our documentary started out as just a wild idea. Now, it's going to be distributed world wide May 3rd. Hopie Hippie started as an idea, Hope for Steve, this blog, all the changes done to our home, etc.
All these started with just an idea where Steve encouraged me, "Yes, Hope, run with that." If he hadn't encouraged me and I listened to the "nay sayers", a lot of magical things wouldn't have happened in our lives.
If you find yourself constantly being discouraged when you have an idea, don't stop. Find a new adviser, and keep going. Because all beautiful projects started as just an idea, and then the courage to try and follow through with that. If your ideas have been failing, and you can't seem to find one that sticks. Don't give up! Your golden ticket is coming I promise.
Ideas are the way the world keeps evolving and growing, and one day yours could change the world. It could be the cure to ALS, or it could be the next life changing movie someone sees that impacts their life so much they change, or the next big invention to make our lives better, or even a way to add just a little bit of beauty to our lives.
Your ideas are worthy of being pursued. Don't let anyone tell you differently. Be an idea person with me, and let's keep shaking up the way people see the world.
I recently had someone gently suggest to me, "Less ideas, more focus." I could see where they were coming from and it totally rattled me. Am I too flaky? All these ideas and not enough follow through? Do people see me as just a wild card. She'll one day have something that sticks?
Feeling totally discouraged I went to my trusty adviser (Steve :)), and asked what he thought. He said without skipping a beat, "You're an idea person, and that's what makes you special. Don't allow someone who doesn't understand you stop you, from being you."
That's why he's my adviser, you see. I come to him with every wild idea, and he always tells me to pursue it with the rare exception of the idea being to big for my breeches. He encourages me to pursue everything with equal measure, and is there to catch me when those ideas flop, and to keep pushing me when I need the extra motivation.
The beauty of having someone tell you to run with your wild ideas, is that some of those ideas blossom into really amazing things. Our documentary started out as just a wild idea. Now, it's going to be distributed world wide May 3rd. Hopie Hippie started as an idea, Hope for Steve, this blog, all the changes done to our home, etc.
All these started with just an idea where Steve encouraged me, "Yes, Hope, run with that." If he hadn't encouraged me and I listened to the "nay sayers", a lot of magical things wouldn't have happened in our lives.
If you find yourself constantly being discouraged when you have an idea, don't stop. Find a new adviser, and keep going. Because all beautiful projects started as just an idea, and then the courage to try and follow through with that. If your ideas have been failing, and you can't seem to find one that sticks. Don't give up! Your golden ticket is coming I promise.
Ideas are the way the world keeps evolving and growing, and one day yours could change the world. It could be the cure to ALS, or it could be the next life changing movie someone sees that impacts their life so much they change, or the next big invention to make our lives better, or even a way to add just a little bit of beauty to our lives.
Your ideas are worthy of being pursued. Don't let anyone tell you differently. Be an idea person with me, and let's keep shaking up the way people see the world.
Wednesday, March 9, 2016
Back to the basics
What would you do if there was no one following you? No Instagram followers, no Facebook posts, and no 140 character tweets?
Would you be different? More focused? Try more things? Would you be less judgmental on yourselves and just do your own thing? Would you wear that bathing suit and sit in the sunshine soaking it up? Would you try to dance? Paint? Create?
Getting back to my roots this past weekend reminded me of a simpler time. A time where I would spend most of my days lost in nature and in my mind. I didn't care if people thought it was weird that I spent more time with trees than people, and certainly didn't care if something I said was misunderstood by someone on the computer.
I remember when computers were introduced because my mom sold them. They were a tool, she explained that would help us feel more connected to the outside world. Well, I didn't want to be connected at that time. I was perfectly happy being lost in the mountains and trees. I was okay with who I was, and it didn't dawn on me that it was abnormal to want to be alone rather than with people.
Now, I have the same fondness for being alone and doing my own thing, thankfully. I also have that fondness with connecting with those around me, and sometimes the balance is a tricky thing. How much do I share to be able to make the impact I intend to make? How much does the feedback I get influence what I post? How much do I allow that person who doesn't agree with me, sway my way of thinking?
Being back in nature this weekend awoke something inside of me, that I was slowly loosing to the social media world. So back to the basics of doing what makes me, me. Spending more time in nature, and in the presence of actual people. More time creating, less time comparing. My most creative times come when I unplug and just let the divine flow through me. When I am just me, that's when I make the most impact. No more feeling like I have to compete to get more likes, more followers, or more support. I am supported and loved and those that feel that way, do so because I am just me. Not some girl on the internet.
Having a strong social media presence will still be important for Steve and I. However, it will be on our own terms again. Back to the basics when being me, didn't mean posting things just for likes. The things I post I want to come from my heart. From the part of me that wakes up when I'm with the trees and things that excite me.
How are you letting social media take away from the gift that is YOU? Is it holding you back? Are you afraid of the negative feedback that might come from just being?
What happens when you let that go? Be you, the you that isn't being watched by hundreds to thousands of people, and remember that you IS ENOUGH.
Would you be different? More focused? Try more things? Would you be less judgmental on yourselves and just do your own thing? Would you wear that bathing suit and sit in the sunshine soaking it up? Would you try to dance? Paint? Create?
Getting back to my roots this past weekend reminded me of a simpler time. A time where I would spend most of my days lost in nature and in my mind. I didn't care if people thought it was weird that I spent more time with trees than people, and certainly didn't care if something I said was misunderstood by someone on the computer.
I remember when computers were introduced because my mom sold them. They were a tool, she explained that would help us feel more connected to the outside world. Well, I didn't want to be connected at that time. I was perfectly happy being lost in the mountains and trees. I was okay with who I was, and it didn't dawn on me that it was abnormal to want to be alone rather than with people.
Now, I have the same fondness for being alone and doing my own thing, thankfully. I also have that fondness with connecting with those around me, and sometimes the balance is a tricky thing. How much do I share to be able to make the impact I intend to make? How much does the feedback I get influence what I post? How much do I allow that person who doesn't agree with me, sway my way of thinking?
Being back in nature this weekend awoke something inside of me, that I was slowly loosing to the social media world. So back to the basics of doing what makes me, me. Spending more time in nature, and in the presence of actual people. More time creating, less time comparing. My most creative times come when I unplug and just let the divine flow through me. When I am just me, that's when I make the most impact. No more feeling like I have to compete to get more likes, more followers, or more support. I am supported and loved and those that feel that way, do so because I am just me. Not some girl on the internet.
Having a strong social media presence will still be important for Steve and I. However, it will be on our own terms again. Back to the basics when being me, didn't mean posting things just for likes. The things I post I want to come from my heart. From the part of me that wakes up when I'm with the trees and things that excite me.
How are you letting social media take away from the gift that is YOU? Is it holding you back? Are you afraid of the negative feedback that might come from just being?
What happens when you let that go? Be you, the you that isn't being watched by hundreds to thousands of people, and remember that you IS ENOUGH.
Tuesday, March 8, 2016
You ARE amazing. Don't let anyone to tell you other wise.
I recently took a trip home to visit family, and it's been 3 years since I've had the chance to do so. I was inspired by the strong women that raised me, to blog more often, and continue to stand strong in my own power.
This inspiration happened to coincide with International Women's Day, which is today; and some negativity that Steve & I experienced on Facebook yesterday. This message isn't to focus on the negative, so I'm not even sharing the details of what happened; it's a thought that spun from this all happening at once.
My mom is a strong, loving, kind, empowered, open, Jesus loving, hard working mom; whom I'm eternally grateful for. Growing up she taught us to be strong in your own power while being open to the love and blessings the world has to offer. She taught me to hustle and to work hard, and also taught me that it's okay to accept help; instead of seeing it as a weakness. She taught me to show love and kindness to everyone, even those who we may see as undeserving. She taught me that WE decide how we see ourselves, and that if we allow others opinions of us to shake us; that's on us.
So I'm here to say, thank you, to my mom and all the strong women (and men) out there who taught us that we decide the value we put on our lives. That just because someone doesn't like us, or they use our words against us; doesn't mean we can't like ourselves.
In this world of social media, where we can hide behind our computers and phones and say whatever comes to mind, without thinking if it's kind or not; we need to have a strong sense in who we are if we decide to share our lives. Part of me gets sad when I see or experience negativity or judgment, that it's become so okay to be mean. How it's socially acceptable to speak unkindly to someone even when you don't know the facts. But, then it reminds me that I have work to do.
There are some among us who don't feel like they have value! A comment on the internet could make them feel like they aren't worthy of love, or like they deserved the negative attention. I'm here to tell you, you ARE SO worthy of love. You are beautiful, strong, capable, and deserving of love and kindness, and if someone isn't giving you this; it's NOT YOU. It really is them.
****Please if you're ever feeling like you have no worth (regardless if someone told you that or you just think it) please reach out to me. I'm happy to help you see the beauty that lies in you. We ALL have it.****
If I'm judgmental on someone, 100% of the time it's because it's something I haven't worked out with myself. Look, I'm just as guilty of judging people as the next, but I make a choice in my interactions. Is this kind? Is it really them? Sometimes it takes me a while, because I think there's no way this is on me, but if I remove my ego long enough to see; it's life changing. If I am judging you, it's because I am judging that quality in me. 100% of the time.
Kindness is not weakness. You can say what you need to say, while being kind. I promise you can. Trust me if I feel like I need to say something to someone I will, but I will do everything in my power to find a loving way to do it. It's hard, it's a strength! It takes actual strength to be kind to some people.
On this day where we celebrate all the strong women out there building people up, shaking up our old ways of thinking, creating beautiful lives in your own way, shining kindness and love on others; I praise all of you difference makers. Women (and men) doing their things with love. You are amazing. I'm also here to remind you, that your value doesn't come from a comment on the internet, or something mean someone said to you. YOU ARE AMAZING. Don't allow anyone to tell you otherwise.
<3
This inspiration happened to coincide with International Women's Day, which is today; and some negativity that Steve & I experienced on Facebook yesterday. This message isn't to focus on the negative, so I'm not even sharing the details of what happened; it's a thought that spun from this all happening at once.
My mom is a strong, loving, kind, empowered, open, Jesus loving, hard working mom; whom I'm eternally grateful for. Growing up she taught us to be strong in your own power while being open to the love and blessings the world has to offer. She taught me to hustle and to work hard, and also taught me that it's okay to accept help; instead of seeing it as a weakness. She taught me to show love and kindness to everyone, even those who we may see as undeserving. She taught me that WE decide how we see ourselves, and that if we allow others opinions of us to shake us; that's on us.
So I'm here to say, thank you, to my mom and all the strong women (and men) out there who taught us that we decide the value we put on our lives. That just because someone doesn't like us, or they use our words against us; doesn't mean we can't like ourselves.
In this world of social media, where we can hide behind our computers and phones and say whatever comes to mind, without thinking if it's kind or not; we need to have a strong sense in who we are if we decide to share our lives. Part of me gets sad when I see or experience negativity or judgment, that it's become so okay to be mean. How it's socially acceptable to speak unkindly to someone even when you don't know the facts. But, then it reminds me that I have work to do.
There are some among us who don't feel like they have value! A comment on the internet could make them feel like they aren't worthy of love, or like they deserved the negative attention. I'm here to tell you, you ARE SO worthy of love. You are beautiful, strong, capable, and deserving of love and kindness, and if someone isn't giving you this; it's NOT YOU. It really is them.
****Please if you're ever feeling like you have no worth (regardless if someone told you that or you just think it) please reach out to me. I'm happy to help you see the beauty that lies in you. We ALL have it.****
If I'm judgmental on someone, 100% of the time it's because it's something I haven't worked out with myself. Look, I'm just as guilty of judging people as the next, but I make a choice in my interactions. Is this kind? Is it really them? Sometimes it takes me a while, because I think there's no way this is on me, but if I remove my ego long enough to see; it's life changing. If I am judging you, it's because I am judging that quality in me. 100% of the time.
Kindness is not weakness. You can say what you need to say, while being kind. I promise you can. Trust me if I feel like I need to say something to someone I will, but I will do everything in my power to find a loving way to do it. It's hard, it's a strength! It takes actual strength to be kind to some people.
On this day where we celebrate all the strong women out there building people up, shaking up our old ways of thinking, creating beautiful lives in your own way, shining kindness and love on others; I praise all of you difference makers. Women (and men) doing their things with love. You are amazing. I'm also here to remind you, that your value doesn't come from a comment on the internet, or something mean someone said to you. YOU ARE AMAZING. Don't allow anyone to tell you otherwise.
<3
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