Katie

@ketik
Community Voices

Such a terrible day!

<p>Such a terrible day!</p>
35 people are talking about this
Community Voices
Katie

New here

Hi, I’m new to Mighty and I’m still figuring things out. But one of the main reasons I joined was to connect with other parents who are raising kids while dealing with their own chronic illnesses. In my case, it’s my husband that is chronically I’ll and I’m the primary caregiver of our 5 and 3 year olds. The pandemic has changed how we approach everything, including parenting and I have a lot of grief and anxiety around that. Anyway, just looking for a community around that.

2 people are talking about this
Community Voices

What are your limits right now?

<p>What are your limits right now?</p>
66 people are talking about this
Community Voices

Desperation to Not Feel This Despair and Hopelessness, but Move on to Acceptance?

Desperation to Not Feel This Dispair and hopelessness, but Move On To Acceptance?

It truly cuts my soul deep how people don't care about people anymore. Families don't even care about their own blood anymore. Everyone has lost their morals and so many left numb. All as a result of mental health. A sad day this world has created.
If you don't understand people with mental disorders, stop and count every single one of your blessings. It's absolutely no way to live. It's funny when I would hear throughout my life, "It's like you WANT to be unhappy.". Think about this statement, why would ANYONE WANT to be unhappy?
Where I am so beyond disheartened though is the scary workd I'm waking up to, I can't understand people's ability to be so cold and unremorseful.
I say waking up because my life has felt as if I've been watching myself live it through a telescope . So far removed, but that's a story in itself for another time.
I know I can be fixed cuz I had the Stellate Ganglion Block done for my CPTSD. For 3 days I was in complete bliss. I felt normal!! For once my muscles relaxed at night and I slept. When I woke up, I didn't feel irritable and tired, cuz I actually rested. Doing normal chores and cleaning were no big deal. For once I could see life as beautiful as it can be.
Three days later, I have another 2 terribly traumatic events happen at the same time, and I went right back to where I started.
I attempted to get another one, using every last cent we had and, nothing.
I see all these wealthy people on TV and the internet. They are literally dropping hundreds of thousands dollars on things like, $5,000 a night hotel room. $4,000 on a four year olds outfit that will only wear once and discard.
Do they not realize that for less than maybe even half of that amount, could provide the treatment that could COMPLETELY transforms someone's ENTIRE life. It could let my friend with a pinched sciatic nerve, to walk again. People are throwing away money literally all day every day, in large volumes. Spending so much money on material things that don't even leave this world with us. All the while, there are so many people suffering on different levels, and there is no relief.
If I could function properly, I would be able to be successful, just like them. I could help others and would love every minute of it.
Instead I live in a home that feels like a prison because my brain is broken. while I watch a few teenagers on youtube literally flush that kind of money down the toilet for fun.
Reality is I'm no one. A nothing . So why would anyone care to even read this? Or feel the torment and pain that I feel so intensely it often makes me suicidal. I have no control.
We are lacking so many jobs that desperately need to be filled. If they could get us with mental health issues treatment, we would love to be in these positions. We are not evil, we have an imbalance in the chemicals in our brain. Once that has been corrected, we are just like the next person. Even better, cuz we have been living in our own hell for so long, we would be happy to do just about anything. Just to not live the the prison we have during our mental disorders.
I keep hoping that one day things will change , and people will realize that the only things that leaves this earth with us are the love and relationships that we create while here.
Caring for my mom full time, I can't work. Plus there are 3 of us plus I have 4 dogs whom eat better than me most days. Between them and my mom I HAVE to get out of bed. I can't hurt myself or worse, because they solely rely on me I rescued them all. We are barely making it by. Yet to this day, when my friend who needs a ride home from the bar, I'm going to wake up my mom and we will go get her safely home. If a stranger needs $10 in gas to get to work, I give it , never lend it. I give it if I have it, even if it's my last dollar.
I may not have anything, but what I do have, I try to do as much as I can for others rather than for myself. I have been this way since I was little. These are the qualities I hold tightly to cuz if I lose them , I will be cold just like most of the world..... just like the money flushers. lol.. but true.
There are so many funds for everything you can imagine., cancer, COVID, ETC. Nothing for mental health. Does no one realize that mental health is literally killing us the same as these diseases, just at a much longer , prolonged torturing rate.
To all of you struggling with mental health , my heart truly hurts for you, I know your pain. I hope some day treatment for mental health will be something that low income people deserve as well.
Mental illness is terrible. If you are reading this and thinking how much drama mental people are, again, be greatful you think this way, that means you have never experienced the pure hell we live in and it's more than real. If you have a loved one exhausted by your energy of desperation to escape living like this, remember, if you think it's hard for you to watch just remember, some people are ignorant to understanding mental health. We need more people being educated on all areas of mental health to get the real understanding.
Healthy people don't randomly go shoot up schools or anyone in general. Mental Illness contributes 100% to these occurrences, in my opinion. When they could do so much more to help those that are broken and prevent these tradgedies completely.
So many people could help others and they wouldn't even miss the amount that would stop someone's mental health issues.
I don't have a choice but to accept that there is no doctor that will care enough to help treat people like me. Those days of caring for their patients is long gone.
If had money I wouldn't have money cuz I would help anyone I possibly could. Frfr. I'm just so sad how everyone is so self absorbed, that they would walk over your collapsed body to get your purse to steal your last dollar, rather than give you a hand up and you would gladly GIVE them that same dollar.

12 people are talking about this

Waiting to Lose a Child to Sanfilippo Syndrome

I knew this was coming. At least, I suspected it would come. The whir of the oxygen machine, the light from the monitors illuminating a little body in a big bed. Bags of saline and medicine and food hanging from the IV pole — like a medical jellyfish. Sea turtle decals on the doors and large pictures of the ocean on the bathroom wall. In our little aquarium with glass doors and windows for observation by the hospital staff, we are swimming in the unknown. “How is it going to happen? What do kids with Sanfilippo syndrome die of?” I asked the genetic counselor this question within a week of getting my daughter’s diagnosis. Maybe ignorance is bliss, but I needed to stare the shark right in the face — instead of just feeling it circling closer and closer. “Respiratory failure is the typical cause.” Now that we’re in the hospital with a respiratory illness, a blue tube running from the whirring machine to my daughter’s mask, I wonder. I wonder if this is it. In the thousands of times that I’ve thought of her death — every day for the last ten-and-a-half years since that first phone call — I have asked myself an impossible question that has no right answer. How would I like that moment to go? I have thought it maybe would be easier if my daughter would go in her sleep, but then I fear that she would be alone and scared. I didn’t know if I could handle being with her, watching her breaths and wondering which would be the last. Now, though, I desperately hope I’m present. My daughter’s like a scuba diver, but the ocean isn’t outside of her. The waves crash on the shores of her lungs, and I’m reminded that we’re made of water. Still, when the floods come and the dams break, water flows where it’s not supposed to, and there’s wreckage. Her oxygen supply sits on wheels — there are no goggles or flippers as part of her ensemble. I navigate my own flood of emotions: resignation, fear, longing, sadness, anticipation, and exhaustion. I’m treading water. I’m not a good swimmer, but I have learned how to let the flow of emotions come to me. They sometimes come in waves, threatening to capsize me, but other times, they gently rock me, soothing and consoling me. I’ve heard it said that salt water cures all things: tears, sweat, and the sea. I know that to be true because I have let salty rivers run down my face as I gasp for breath between sobs. I have worked my body, pounding out frustration, confusion, and joy as sweat drips down my nose and makes my glasses slide. I have felt the delicious dichotomy of shrinking irrelevance and profound significance as I’ve stood with my feet in the sand and watched the vast ocean stretching out before me. There’s healing in the water. The flow and rhythm. The waves and ripples. The pulse in the fish tank of the womb. My daughter navigated the baptism of water and blood into a new life after gently swimming and swirling and stretching for nine months. I hope I get to care for her body as her soul makes the transition to the next destination. I hope I get to tell her I love her. I hope I get to witness the crossing. I hope I get to mother her and labor with her — in pain and joy and wonder. But not today. Today, we adjust the flow of air, silence alarms when the IV line is pinched, adjust her, check her skin, change her, and rub her legs. Today, her wild hair gets caught on the stickers attached to her chest and the straps keeping the mask tight on her face. Today, I breathe in the scent of my daughter’s hair, touch her skin, and feel a wave of gratitude for the gift of motherhood.

Community Voices

Desperation to Not Feel This Despair and Hopelessness, but Move on to Acceptance?

Desperation to Not Feel This Dispair and hopelessness, but Move On To Acceptance?

It truly cuts my soul deep how people don't care about people anymore. Families don't even care about their own blood anymore. Everyone has lost their morals and so many left numb. All as a result of mental health. A sad day this world has created.
If you don't understand people with mental disorders, stop and count every single one of your blessings. It's absolutely no way to live. It's funny when I would hear throughout my life, "It's like you WANT to be unhappy.". Think about this statement, why would ANYONE WANT to be unhappy?
Where I am so beyond disheartened though is the scary workd I'm waking up to, I can't understand people's ability to be so cold and unremorseful.
I say waking up because my life has felt as if I've been watching myself live it through a telescope . So far removed, but that's a story in itself for another time.
I know I can be fixed cuz I had the Stellate Ganglion Block done for my CPTSD. For 3 days I was in complete bliss. I felt normal!! For once my muscles relaxed at night and I slept. When I woke up, I didn't feel irritable and tired, cuz I actually rested. Doing normal chores and cleaning were no big deal. For once I could see life as beautiful as it can be.
Three days later, I have another 2 terribly traumatic events happen at the same time, and I went right back to where I started.
I attempted to get another one, using every last cent we had and, nothing.
I see all these wealthy people on TV and the internet. They are literally dropping hundreds of thousands dollars on things like, $5,000 a night hotel room. $4,000 on a four year olds outfit that will only wear once and discard.
Do they not realize that for less than maybe even half of that amount, could provide the treatment that could COMPLETELY transforms someone's ENTIRE life. It could let my friend with a pinched sciatic nerve, to walk again. People are throwing away money literally all day every day, in large volumes. Spending so much money on material things that don't even leave this world with us. All the while, there are so many people suffering on different levels, and there is no relief.
If I could function properly, I would be able to be successful, just like them. I could help others and would love every minute of it.
Instead I live in a home that feels like a prison because my brain is broken. while I watch a few teenagers on youtube literally flush that kind of money down the toilet for fun.
Reality is I'm no one. A nothing . So why would anyone care to even read this? Or feel the torment and pain that I feel so intensely it often makes me suicidal. I have no control.
We are lacking so many jobs that desperately need to be filled. If they could get us with mental health issues treatment, we would love to be in these positions. We are not evil, we have an imbalance in the chemicals in our brain. Once that has been corrected, we are just like the next person. Even better, cuz we have been living in our own hell for so long, we would be happy to do just about anything. Just to not live the the prison we have during our mental disorders.
I keep hoping that one day things will change , and people will realize that the only things that leaves this earth with us are the love and relationships that we create while here.
Caring for my mom full time, I can't work. Plus there are 3 of us plus I have 4 dogs whom eat better than me most days. Between them and my mom I HAVE to get out of bed. I can't hurt myself or worse, because they solely rely on me I rescued them all. We are barely making it by. Yet to this day, when my friend who needs a ride home from the bar, I'm going to wake up my mom and we will go get her safely home. If a stranger needs $10 in gas to get to work, I give it , never lend it. I give it if I have it, even if it's my last dollar.
I may not have anything, but what I do have, I try to do as much as I can for others rather than for myself. I have been this way since I was little. These are the qualities I hold tightly to cuz if I lose them , I will be cold just like most of the world..... just like the money flushers. lol.. but true.
There are so many funds for everything you can imagine., cancer, COVID, ETC. Nothing for mental health. Does no one realize that mental health is literally killing us the same as these diseases, just at a much longer , prolonged torturing rate.
To all of you struggling with mental health , my heart truly hurts for you, I know your pain. I hope some day treatment for mental health will be something that low income people deserve as well.
Mental illness is terrible. If you are reading this and thinking how much drama mental people are, again, be greatful you think this way, that means you have never experienced the pure hell we live in and it's more than real. If you have a loved one exhausted by your energy of desperation to escape living like this, remember, if you think it's hard for you to watch just remember, some people are ignorant to understanding mental health. We need more people being educated on all areas of mental health to get the real understanding.
Healthy people don't randomly go shoot up schools or anyone in general. Mental Illness contributes 100% to these occurrences, in my opinion. When they could do so much more to help those that are broken and prevent these tradgedies completely.
So many people could help others and they wouldn't even miss the amount that would stop someone's mental health issues.
I don't have a choice but to accept that there is no doctor that will care enough to help treat people like me. Those days of caring for their patients is long gone.
If had money I wouldn't have money cuz I would help anyone I possibly could. Frfr. I'm just so sad how everyone is so self absorbed, that they would walk over your collapsed body to get your purse to steal your last dollar, rather than give you a hand up and you would gladly GIVE them that same dollar.

12 people are talking about this
Community Voices

What are your limits right now?

<p>What are your limits right now?</p>
66 people are talking about this
Community Voices
Katie

Chronically ill and parenting: balancing everyone’s needs

One of the things I struggle most with, and why I was interested to join this community and see if others had similar challenges, is balancing the needs of my children with those of my chronically ill husband.

He was diagnosed in late 2019 and then the pandemic hit, so we’ve been figuring it all out at the same time. He is at high risk for COVID, which could worsen his disease even if it’s a “mild” case. I imagine many of you here have similar risks. So our household has stayed locked down essentially the same way we have since March 2020.

As it is becoming clear COVID is a long term risk, we are starting to discuss what this means for our family life. Nearly every day I fret over my children’s lack of play dates, of our decision to homeschool, of how we haven’t seen family in person, of how many adventures out in the world we aren’t taking. And yet, the risks to my husband’s health are real and aren’t going away. This moral calculus of whose needs get priority is exhausting. Can anyone here relate? Does anyone have another perspective to share? #GeneralParenting #ChronicIllness #Parenting

3 people are talking about this
Community Voices
Katie

Chronically ill and parenting: balancing everyone’s needs

One of the things I struggle most with, and why I was interested to join this community and see if others had similar challenges, is balancing the needs of my children with those of my chronically ill husband.

He was diagnosed in late 2019 and then the pandemic hit, so we’ve been figuring it all out at the same time. He is at high risk for COVID, which could worsen his disease even if it’s a “mild” case. I imagine many of you here have similar risks. So our household has stayed locked down essentially the same way we have since March 2020.

As it is becoming clear COVID is a long term risk, we are starting to discuss what this means for our family life. Nearly every day I fret over my children’s lack of play dates, of our decision to homeschool, of how we haven’t seen family in person, of how many adventures out in the world we aren’t taking. And yet, the risks to my husband’s health are real and aren’t going away. This moral calculus of whose needs get priority is exhausting. Can anyone here relate? Does anyone have another perspective to share? #GeneralParenting #ChronicIllness #Parenting

3 people are talking about this
Community Voices

Tell me a bit about you!

<p>Tell me a bit about you!</p>
6 people are talking about this