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Steve's ALS in simple detail
I want to first state, I choose not to address most negative comments because, simply, positive breeds positive, & same goes for negative. No need to breed any negativity in our lives. However, I do want to explain things to all of those who need further details to understand Steve's (our) journey with ALS.
For starters, we don't mind feedback from people, we opened ourselves up to y'all and that's what happens, we are cool with it. I do want y'all to know we do read every email, message, etc, I just cannot always respond to everyone.
This is a simple explanation of how Steve's ALS is different than others ALS, simply because EVERYONE is different and EVERYONE handles things differently so this is Steve's (our) story.
Steve was an athlete his entire life, which led to numerous injuries, including head trauma and broken bones. Steve was also jumped while in college by some gang members, where those that know him, can say he never fully recovered from. We believe Steve's ALS is trauma induced.
Because of that Steve has chronic pain, so yes he does take a lot of pain medications. To those who question why we would give Steve pain medicine despite their loved one never having pain---again I say Steve is different. He has real life, can't make that up, extreme pain---so yes I will give him as much pain medication as I medically can to keep him comfortable while not doing damage. Yes it helps. No it doesn't have ANYTHING to do with the further complications.
After Steve got his feeding tube placed in Feb 2013 he got a severe infection in his feeding tube which was the beginning of the infection phase. Once you get a severe infection and you are already compromised it becomes very difficult for it to go away fully. Come April & May we all know Steve was hospitalized with severe pneumonia, he had to get an emergency tracheostomy, & there began our respiratory problems. July is when we discovered Steve grew infections in his lungs. Despite all the natural remedies, the slew of antibiotics he has been on since then---they are colonized. Meaning they will never go away. Now Steve is resilient and lives with these infections everyday. Some days he feels great & some days he feels terrible. We take full advantage of those great days & we let him rest on those not so great days. Since the feeding tube was placed Steve had begun large problems tolerating feeds. I even made our own food that was a special formula for sensitive stomachs, but the problem only got worse. Come October of 2013 Steve began to no longer be able to take food by stomach AT ALL. Anything we would give him, he would throw up, aspirate, get pneumonia, and lose more weight. We got him placed on IV foods, tried slow feeds up until Feb 2014 but it only ever made him sick. It's called gastroparesis. No it doesn't happen to all ALS patients, in fact hardly any. Yes it did happen to Steve. The same time Steve became vent dependent. Upon initial diagnoses Steve did not want to be on the vent full time. Yes he changed his mind. (yes I'm thankful he did) Now, due to him only receiving IV nutrients he is malnourished. He has developed anemia of chronic disease, where he is no longer able to make red blood cells. Steve will need frequent infusions. This has it's own share of risks but to put it simply is that one day he will not longer be able to receive a transfusion. We have idea when that will happen, nor do we have a way of determine when that will be. Steve has experienced frequent UTI's since day one of diagnoses. If you research you will see that the bladder gradually becomes weaker to where you can't fully empty, that will breed infection. Add Steve having infections internally already that will never go away, add a catheter to help him to void completely, you get an infection festering paradise. As of now Steve is unable to urinate without a catheter. Steve will have infections always and will be on antibiotics always, but Steve can live with infections if we continue to be diligent to stay on top of them.
Now that you have the abbreviated version, let me touch on the most important part of this story. Steve's courage and strength are amazing. Not everyone has it. He wants to live as long as he physically can & is willing to go through a lot to be able to stay alive. He CHOOSES every day to fight, no one else decides it but him. While Steve sleeps a lot more these days and sometimes forgets getting medicine or small things here or there, he is of VERY SOUND MIND. I will honor every decision Steve wants to make, ever. Therefore, for those who question why we are still keeping Steve alive, know this; Steve is amazing, we live an amazing life, and he chooses to stay alive, so therefore I do everything I can along with our amazing medical team to keep him alive.
Thank you to those who understands, supports, and respects our fight. Thank you for those who can be brave and spend time with us despite how heavy things can be at times. Thank you for those who know we are full of light, life, & happiness literally everyday that we have another day together & for those who help keep that light shining. Not everyone will handle a diagnoses of ALS like this & that is okay. Because the beauty is it's Steve's life & he is choosing to live it how he wants. So I hope we all honor not only his choices but everyone else who is faced with this awful disease, because unless you are in their shoes you will never know what you would choose. I also hope you never have to.
Thanks, much love, light, & positivity for y'all
For starters, we don't mind feedback from people, we opened ourselves up to y'all and that's what happens, we are cool with it. I do want y'all to know we do read every email, message, etc, I just cannot always respond to everyone.
This is a simple explanation of how Steve's ALS is different than others ALS, simply because EVERYONE is different and EVERYONE handles things differently so this is Steve's (our) story.
Steve was an athlete his entire life, which led to numerous injuries, including head trauma and broken bones. Steve was also jumped while in college by some gang members, where those that know him, can say he never fully recovered from. We believe Steve's ALS is trauma induced.
Because of that Steve has chronic pain, so yes he does take a lot of pain medications. To those who question why we would give Steve pain medicine despite their loved one never having pain---again I say Steve is different. He has real life, can't make that up, extreme pain---so yes I will give him as much pain medication as I medically can to keep him comfortable while not doing damage. Yes it helps. No it doesn't have ANYTHING to do with the further complications.
After Steve got his feeding tube placed in Feb 2013 he got a severe infection in his feeding tube which was the beginning of the infection phase. Once you get a severe infection and you are already compromised it becomes very difficult for it to go away fully. Come April & May we all know Steve was hospitalized with severe pneumonia, he had to get an emergency tracheostomy, & there began our respiratory problems. July is when we discovered Steve grew infections in his lungs. Despite all the natural remedies, the slew of antibiotics he has been on since then---they are colonized. Meaning they will never go away. Now Steve is resilient and lives with these infections everyday. Some days he feels great & some days he feels terrible. We take full advantage of those great days & we let him rest on those not so great days. Since the feeding tube was placed Steve had begun large problems tolerating feeds. I even made our own food that was a special formula for sensitive stomachs, but the problem only got worse. Come October of 2013 Steve began to no longer be able to take food by stomach AT ALL. Anything we would give him, he would throw up, aspirate, get pneumonia, and lose more weight. We got him placed on IV foods, tried slow feeds up until Feb 2014 but it only ever made him sick. It's called gastroparesis. No it doesn't happen to all ALS patients, in fact hardly any. Yes it did happen to Steve. The same time Steve became vent dependent. Upon initial diagnoses Steve did not want to be on the vent full time. Yes he changed his mind. (yes I'm thankful he did) Now, due to him only receiving IV nutrients he is malnourished. He has developed anemia of chronic disease, where he is no longer able to make red blood cells. Steve will need frequent infusions. This has it's own share of risks but to put it simply is that one day he will not longer be able to receive a transfusion. We have idea when that will happen, nor do we have a way of determine when that will be. Steve has experienced frequent UTI's since day one of diagnoses. If you research you will see that the bladder gradually becomes weaker to where you can't fully empty, that will breed infection. Add Steve having infections internally already that will never go away, add a catheter to help him to void completely, you get an infection festering paradise. As of now Steve is unable to urinate without a catheter. Steve will have infections always and will be on antibiotics always, but Steve can live with infections if we continue to be diligent to stay on top of them.
Now that you have the abbreviated version, let me touch on the most important part of this story. Steve's courage and strength are amazing. Not everyone has it. He wants to live as long as he physically can & is willing to go through a lot to be able to stay alive. He CHOOSES every day to fight, no one else decides it but him. While Steve sleeps a lot more these days and sometimes forgets getting medicine or small things here or there, he is of VERY SOUND MIND. I will honor every decision Steve wants to make, ever. Therefore, for those who question why we are still keeping Steve alive, know this; Steve is amazing, we live an amazing life, and he chooses to stay alive, so therefore I do everything I can along with our amazing medical team to keep him alive.
Thank you to those who understands, supports, and respects our fight. Thank you for those who can be brave and spend time with us despite how heavy things can be at times. Thank you for those who know we are full of light, life, & happiness literally everyday that we have another day together & for those who help keep that light shining. Not everyone will handle a diagnoses of ALS like this & that is okay. Because the beauty is it's Steve's life & he is choosing to live it how he wants. So I hope we all honor not only his choices but everyone else who is faced with this awful disease, because unless you are in their shoes you will never know what you would choose. I also hope you never have to.
Thanks, much love, light, & positivity for y'all
Know you. Love you.
If I have the chance to sit outside, I will always take it
If someone offers me wine, the answer is always yes
I don't eat meat and never want to again
Yet I want a cigarette almost everyday of my life
I don't smoke
Because I choose not to daily
I talk a lot
I also listen
I am a very good listener
I miss having people feel like they can confide in me like they did when I was just a therapist
People don't like to tell me their problems now
Because we all know nothing outweighs ALS
People are often scared to ask details about our life with ALS.
We don't mind.
We like to talk about it
We love our lives
Genuinely
I smudge a lot
If someone offers me wine, the answer is always yes
I don't eat meat and never want to again
Yet I want a cigarette almost everyday of my life
I don't smoke
Because I choose not to daily
I talk a lot
I also listen
I am a very good listener
I miss having people feel like they can confide in me like they did when I was just a therapist
People don't like to tell me their problems now
Because we all know nothing outweighs ALS
People are often scared to ask details about our life with ALS.
We don't mind.
We like to talk about it
We love our lives
Genuinely
I smudge a lot
If you know what that means then we would probably get along very well
I'm open minded
I have strong beliefs
Yes at the same time
I want others to be able to decide for themselves
I'm open minded
I have strong beliefs
Yes at the same time
I want others to be able to decide for themselves
I don't want someone to tell me what to choose
Ever.
I respect others freedom
Because I value mine so much
Steve & ALS gave me a spine.
The things in the past that I used to tolerate doesn't fly with me now
I still consider myself a loving nice person
I love myself as well as others now
And that is why things have changed.
I care about what others think
I respect others freedom
Because I value mine so much
Steve & ALS gave me a spine.
The things in the past that I used to tolerate doesn't fly with me now
I still consider myself a loving nice person
I love myself as well as others now
And that is why things have changed.
I care about what others think
I want people to feel happy around me
I want to be positive in their life
If someone doesn't like my outfit, tattoos, or hair I don't care
I will be offended if you call me ugly
But much more so if you call me dumb
I had to work hard to learn what I have
And never want to stop learning
I hope I learn something new everyday of my life
Because that's how I grow
I am deep
I analyze my thoughts and actions every day
I journal almost everyday
I like writing
I have realized I'm actually good at it
While I still have a lot of grammar issues to work out
Yes
I believe I am a good writer while I struggle with grammar
I like to learn
I keep trying to learn
The more I learn the better I become
At everything
I meditate every day
If not I worry and fall apart
which I cannot afford to do
I also need to keep my feet on the ground
Some days life is surreal
And some days it gets to me
So I mediate
Every day
Yoga started because I'm vain
I want to look the best, feel the best, & be the best I can
I call it self care vain
Yoga turned into more
It is a lifestyle
Yoga helped me become the Hope people need me to be
I want to be positive in their life
If someone doesn't like my outfit, tattoos, or hair I don't care
I will be offended if you call me ugly
But much more so if you call me dumb
I had to work hard to learn what I have
And never want to stop learning
I hope I learn something new everyday of my life
Because that's how I grow
I am deep
I analyze my thoughts and actions every day
I journal almost everyday
I like writing
I have realized I'm actually good at it
While I still have a lot of grammar issues to work out
Yes
I believe I am a good writer while I struggle with grammar
I like to learn
I keep trying to learn
The more I learn the better I become
At everything
I meditate every day
If not I worry and fall apart
which I cannot afford to do
I also need to keep my feet on the ground
Some days life is surreal
And some days it gets to me
So I mediate
Every day
Yoga started because I'm vain
I want to look the best, feel the best, & be the best I can
I call it self care vain
Yoga turned into more
It is a lifestyle
Yoga helped me become the Hope people need me to be
The Hope I want to be.
I presently live to make a difference in the world
And I hope I always will.
I presently live to make a difference in the world
And I hope I always will.
I hope each of you feel this much clarity with who you are currently or one day. I hope that you are patient to understand that you are ever evolving and changing. I hope you learn to know you. Most important I hope you can all learn to love you.
Positive energy for the win
Sometimes life presents certain situations that could get you down, if you choose to let it. Sometimes it's so easy just to pout, scream, cry, swear, and stay in bed a few days. However, that route isn't very satisfying. It makes you feel bad, sad, even angry. Holding onto those feelings eventually can cause physical sickness. So why not do the work & feel better? Once you learn to start thinking more positive, working on communicating why you are feeling these things, and then working on letting them go, the work becomes easier. To the point where you begin to say, "Yeah the whole staying in bed pouting thing is not an option," and you put your big girl pants on and do what needs to be done.
It's a beautiful thing actually when you can start to catch yourself in that process. You say "ah wait I'm focusing on the negative right now, and allowing that to control my mood and feelings, I don't want to feel negative, I want to feel positive." You then change your focus. It's beautiful to reach that point. Be patient with yourself because somedays the negative will be harder to kick than others, but if you can be the one to stop it, that's progress. Each time you stop it and shift your energy back to positive, the easier it becomes to remain positive and come back to positive more quickly.
When it is hard ask. The universe will help you find the positive energy and let go of the negative if you ask. Pray for it, ask for help getting the positive energy, surround yourself with positive people, plan fun things, do a sage cleanse, do some earthing etc, whatever you find that works for you. If you set your intentions of wanting to remain positive and something negative comes up, ask for the positive; it will come. I promise.
I can say this because it's been a process of mine for a while, and I have been seeing the change & feeling it. I can honestly tell you from experience that if you do the work, it will pay off.
It's a beautiful thing actually when you can start to catch yourself in that process. You say "ah wait I'm focusing on the negative right now, and allowing that to control my mood and feelings, I don't want to feel negative, I want to feel positive." You then change your focus. It's beautiful to reach that point. Be patient with yourself because somedays the negative will be harder to kick than others, but if you can be the one to stop it, that's progress. Each time you stop it and shift your energy back to positive, the easier it becomes to remain positive and come back to positive more quickly.
When it is hard ask. The universe will help you find the positive energy and let go of the negative if you ask. Pray for it, ask for help getting the positive energy, surround yourself with positive people, plan fun things, do a sage cleanse, do some earthing etc, whatever you find that works for you. If you set your intentions of wanting to remain positive and something negative comes up, ask for the positive; it will come. I promise.
I can say this because it's been a process of mine for a while, and I have been seeing the change & feeling it. I can honestly tell you from experience that if you do the work, it will pay off.
It literally changed my life
I don't know if I'm alone on this but I have a lot of "it changed my life" moments lately, and here's what I think about it. Before, when I never paid attention to the world around me, hardly even paid attention to the people I was with, I never had a lot of life changing moments. I've always had a positive outlook on life but never really experienced a lot of ah ha moments. Now that I am open the experience, it happens more often. I see it in everything.
The amazing people we met on our honeymoon, taught us the value to looking at the simple things in life, being grateful, & focusing on what we do have. Also, the amazing feeling we got from traveling and connecting with others inspired lots of new experiences. Wanee (the first year and second year), 2012 Wanee taught us to get in touch with nature and others in a deeper way. Taught us to relax more and have fun; always dance, be happy, & to try to make it to as many shows as we can because music is healing. The 2013 year is when Michael Franti showed us the most amazing kindness and shared our story with thousands of people (both at the show & after online). Steve & I have always wanted to reach the massess with our story because of the ALS awareness & our story of our love, and with Michael's help we have reached more than we imagined. The documentary premiere even; to be able to feel and revive that much love from the room. It was a dream come true shows us that if you have a dream, never doubt yourself, go for it. If you work hard enough it will come true. ☺️
You have to be open to what the world is presenting you with---if not you will miss lots of life changing experiences.
So give yourselves a chance for these moments to happen. Open your hearts and your minds, & be present. You will be amazed how many days become more than just amazing but they change your life as well.
The amazing people we met on our honeymoon, taught us the value to looking at the simple things in life, being grateful, & focusing on what we do have. Also, the amazing feeling we got from traveling and connecting with others inspired lots of new experiences. Wanee (the first year and second year), 2012 Wanee taught us to get in touch with nature and others in a deeper way. Taught us to relax more and have fun; always dance, be happy, & to try to make it to as many shows as we can because music is healing. The 2013 year is when Michael Franti showed us the most amazing kindness and shared our story with thousands of people (both at the show & after online). Steve & I have always wanted to reach the massess with our story because of the ALS awareness & our story of our love, and with Michael's help we have reached more than we imagined. The documentary premiere even; to be able to feel and revive that much love from the room. It was a dream come true shows us that if you have a dream, never doubt yourself, go for it. If you work hard enough it will come true. ☺️
You have to be open to what the world is presenting you with---if not you will miss lots of life changing experiences.
So give yourselves a chance for these moments to happen. Open your hearts and your minds, & be present. You will be amazed how many days become more than just amazing but they change your life as well.
Self love
I've had a few people message or say sly remarks recently about my like of photos of my self, a selfie, or a photo shoot. Photo shoots are fun y'all. Seriously & if you don't think so you haven't done it up right. The perfect hair & makeup, awesome outfit, great photographer who understands angles and lighting and capture you looking your best. That feeling of seeing a photo and seeing your true beauty. It's something everyone should feel. Imagine if we all realized how beautiful we actually are. Showed ourselves more love---how much happier the world would be.
I grew up thinking I was ugly. More awkward than ugly but still didn't consider myself pretty. No one should ever feel that way. That's why getting dressed up & taking photos makes me happy & should make you happy too. Have fun & love yourself more. You are important and taking care of you is important, & you can't properly care for you until you love you. Let's stop beating ourselves up & start lifting ourselves up. So when someone tells you to stop taking so many photos of yourself---say no I think you should take more of yourself. ❤️
So on the subject of photo shoots, I want to tell y'all about my Free People dream come true. A few months ago they asked me to be apart of their fpme shoot. Of course I was worried about who would take care of Steve, but thankfully he saw this as a fun break for me, and insisted. Thanks to my friends Jen & Meradith for coming to stay with Steve I had the chance to go have the best day! check it out :) Free people inspires girls to be free spirits, strong, determined, adventurous, loving, happy, & well rounded girls. Girls that should be looked up to, that inspire others to be great & look great while doing so! I love to take photos in their clothes & share them on their site. Since coming in contact with them they have sent me a few outfits as gifts, simply for being a free people girl. It's an honor & wanted to share this side of what makes me, me. :)
I grew up thinking I was ugly. More awkward than ugly but still didn't consider myself pretty. No one should ever feel that way. That's why getting dressed up & taking photos makes me happy & should make you happy too. Have fun & love yourself more. You are important and taking care of you is important, & you can't properly care for you until you love you. Let's stop beating ourselves up & start lifting ourselves up. So when someone tells you to stop taking so many photos of yourself---say no I think you should take more of yourself. ❤️
So on the subject of photo shoots, I want to tell y'all about my Free People dream come true. A few months ago they asked me to be apart of their fpme shoot. Of course I was worried about who would take care of Steve, but thankfully he saw this as a fun break for me, and insisted. Thanks to my friends Jen & Meradith for coming to stay with Steve I had the chance to go have the best day! check it out :) Free people inspires girls to be free spirits, strong, determined, adventurous, loving, happy, & well rounded girls. Girls that should be looked up to, that inspire others to be great & look great while doing so! I love to take photos in their clothes & share them on their site. Since coming in contact with them they have sent me a few outfits as gifts, simply for being a free people girl. It's an honor & wanted to share this side of what makes me, me. :)
photo: fp Jana Kirn
How my one day without social media changed my life.
Yes you read that right. I went 24 hours without any social media.
Normal everyday: Wake up, check on Steve, Steve's still sleeping. I pick up my phone, play on Facebook for 20 minutes, replying to 40 things and getting annoyed at the timeline. I move on to Instagram for 30 minutes, check the comments, check the latest posts, and search my favorite people (yes so dedicated the search happens occasionally). Then on to tumblr for 15 minutes, checking for something to strike my eye, then the mail box dings, reminding me that I have to clear the mailbox full of junk mail. Of all the emails I keep 1 of 60 on average. Then Steve wakes up. Of course I'm focused on only Steve when I'm taking care of him, but that is literally the only time. I'm even face booking in my sleep these days. Of course while someone is here we are instragraming, I'm constantly facebooking while watching whatever is on TV or netflix in the evening, & the obligatory photo of my evening yoga or whatever "set" I created that day.
If you really know me you even know my nickname is Mrs. Facebook. I used to justify it, "Oh I need to stay in touch with my family," or, "It's my job, we having a following, we live off these paintings, this DVD is a dream, etc." Now obviously social media is always going to play a large part of my life, but I felt the need for balance. I felt overly involved in social media, whether it be promoting Steve & I (sounds so tacky right), or feeling like I know someone simply because we are friends on social media. I have great real life visits with so many incredible people, I need to be more present in those moments.
This day has been an enlightening and empowering experience. I would go for my phone and immediately be brought back into the present moment. I was so focused on everything I was doing. Proved the theory right, I experienced very minimal ADD. I got so much done in such a short time, I was efficient...not just efficient, everything was done well. I feel empowered that I set my intentions on something and I followed through, I feel enlightened in the simple sense that I really can control my scatter brain, cluttered ways. Granted this will be a process and will require regularly scheduled social media breaks in order to clear the mind again, but this is a life changing start.
The realization. The ah ha moment. After all, that enlightened feeling is one of life's greatest feats. When is the last time you unplugged?
Normal everyday: Wake up, check on Steve, Steve's still sleeping. I pick up my phone, play on Facebook for 20 minutes, replying to 40 things and getting annoyed at the timeline. I move on to Instagram for 30 minutes, check the comments, check the latest posts, and search my favorite people (yes so dedicated the search happens occasionally). Then on to tumblr for 15 minutes, checking for something to strike my eye, then the mail box dings, reminding me that I have to clear the mailbox full of junk mail. Of all the emails I keep 1 of 60 on average. Then Steve wakes up. Of course I'm focused on only Steve when I'm taking care of him, but that is literally the only time. I'm even face booking in my sleep these days. Of course while someone is here we are instragraming, I'm constantly facebooking while watching whatever is on TV or netflix in the evening, & the obligatory photo of my evening yoga or whatever "set" I created that day.
If you really know me you even know my nickname is Mrs. Facebook. I used to justify it, "Oh I need to stay in touch with my family," or, "It's my job, we having a following, we live off these paintings, this DVD is a dream, etc." Now obviously social media is always going to play a large part of my life, but I felt the need for balance. I felt overly involved in social media, whether it be promoting Steve & I (sounds so tacky right), or feeling like I know someone simply because we are friends on social media. I have great real life visits with so many incredible people, I need to be more present in those moments.
This day has been an enlightening and empowering experience. I would go for my phone and immediately be brought back into the present moment. I was so focused on everything I was doing. Proved the theory right, I experienced very minimal ADD. I got so much done in such a short time, I was efficient...not just efficient, everything was done well. I feel empowered that I set my intentions on something and I followed through, I feel enlightened in the simple sense that I really can control my scatter brain, cluttered ways. Granted this will be a process and will require regularly scheduled social media breaks in order to clear the mind again, but this is a life changing start.
The realization. The ah ha moment. After all, that enlightened feeling is one of life's greatest feats. When is the last time you unplugged?