Hello dear ones, it’s been awhile.
How is everyone doing?
I’ve been mixed. A lot has occurred since I last gave an update. I’ve wanted to give an update but I’ve mostly been unable or incapable of doing so. For a variety of reasons.
I’m not sure tonight is the night I give an update. I kinda have a lot of strong emotions and cptsd stuff moving through me this week…. So, I’m trying hard to pull myself through this.
I will say since we’ve last spoken, I’ve, seen a dentist, an oral surgeon, a cardiologist and a neurologist at Cleveland clinic. All by medical transport or volunteers. I recently got a private portable o2 machine after some seriously challenging stuff at Cleveland Clinic.
How about I give you guys a medical update later though. I’m not really able to go into much of it lately. It’s been too much at times. I got a really awful neurologist at Cleveland clinic. In good news, I got a really good cardiologist I will tell you more about later.
I’m writing a cathartic blog tonight because…. I can and I want to. I’m trying to move some of this through me. And, I simply don’t have the funds for therapy these days.
I have so many feelings coming up this week. My normal storm of cptsd is rearing it’s ugly head this week. Maybe last too. Can’t remember. Everything gets discombobulated and foggy. I lost track Of time. Reels play over and over. I’m there. But I’m not. I’m here. It’s hard to be in The present lately. I share this incase anyone else experiences this. My. God you aren’t alone. I feel like I’m pretty good at keeping up with methods and things such as that….. but sometimes…. It just ultimately sucks. There’s no other way to describe it. The waves are so strong, so large and you just keep getting pushed under. That’s where I am at.
And today, I realized an immense loneliness lays within me. And sadness. And grief. I’ve been abandoned by so many (not looking for sympathy) because of this illness. It really shapes and forms you. And conditional love is the worst. It’s been so prevalent in my life. And quite detrimental to me.
So many times I can dig within and find my reserves. I’m used to being solo in this land of one room….. but my battery has been so low. I’ve not had it in me. I feel so unloved. And so …. Much grief over that. By my mother, my husband, my sister and the list goes on. I know many of you get it. My mother didn’t even call to see how my Cleveland clinic trip went. Sigh. I could go on and on with the list of people that don’t care about me. It’s so….. upsetting to my system on so many levels. And I struggle to comprehend.
I know many of them do love. But they love me differently now. And, I don’t think I can open my heart anymore. It’s rarely worth it and causes me so much pain. Sometimes, you just want someone to hug you. Or hold your hand. And tell you pretty things. And…. I really have such a lack of that in my life. And I’m so tired of being reprimanded and scolded for being sick. By my family. By drs. By friends. The woman that disappeared in 2017, is never returning an unchanged woman. I literally was rejected by my family for this. It hurts. So bad. I know I have my children’s love. I feel that. I do. And a few friends. I feel it. But friends are fleeting and in general my situation is too heavy for most. Once I start sharing how I really feel, most close up. Just natural human self preservation. I get it. Also getting so bad with covid this year (you know my home healthcare says ‘hospice’ on the bill?) not that it was, but, it’s just…. It was a very heavy and scary spring for me. And it scared people off. For instance, one friend is neural retraining and asked me to not tell her I was having seizures etc.
like, ok. ….But, she’s allowed to vent to me about all that occurs in her life and issues. It’s so…. Mind jarring. We shouldn’t trauma dump. This i understand. But also, some of us are living through hell and just want to. Be heard. Family and drs certainly aren’t listening to some of us. Again, another conditional friendship. Especially when we just survived covid and 8 ambulances in one month. So sorry that me having seizures put you out. Like I literally had to watch what I say and protect her while I was struggling hard with unknown seizures. Um. Make it make sense!!!
Yay, more abandonment for a woman with so many wounds.
I just feel feelings tonight.
Sometimes it helps to have a witness when you feel such deep despondency. I’m so tired of being my own witness and main cheerleader. Somedays, I think the heartbreak I’ve experienced over all of this and family and friends strife etc…. Has fractured a part of my soul.
Or at least it feels that way.
I guess I keep sailing. Floating. Forever lost at sea.
I’ve recently had quite a few people say that they couldn’t do what I have and fill in the blank. Well meaning people. But it’s so triggering. People are asses. You shouldn’t say that to people who have been at this for 7 years (severely). Because they are real humans and have feelings too. And some of them are hanging on by threads at times.
Maybe thats what I want people to know,
As tears stream down my face…
I’m a real human and I have feelings.
My energy is not just for taking. And my feelings matter. I know it falls on deaf ears and blind eyes within my circle.
But, still I will say it here.
To attempt to satiate my very trodden soul.
Carly don't be sad
Life is crazy
Life is mad
Don't be afraid
Carly don't be sad
That's your destiny
The only chance
Take it, take it in your hands
Life is mad
Don't be afraid
How is everyone doing?
I’ve been mixed. A lot has occurred since I last gave an update. I’ve wanted to give an update but I’ve mostly been unable or incapable of doing so. For a variety of reasons.
I’m not sure tonight is the night I give an update. I kinda have a lot of strong emotions and cptsd stuff moving through me this week…. So, I’m trying hard to pull myself through this.
I will say since we’ve last spoken, I’ve, seen a dentist, an oral surgeon, a cardiologist and a neurologist at Cleveland clinic. All by medical transport or volunteers. I recently got a private portable o2 machine after some seriously challenging stuff at Cleveland Clinic.
How about I give you guys a medical update later though. I’m not really able to go into much of it lately. It’s been too much at times. I got a really awful neurologist at Cleveland clinic. In good news, I got a really good cardiologist I will tell you more about later.
I’m writing a cathartic blog tonight because…. I can and I want to. I’m trying to move some of this through me. And, I simply don’t have the funds for therapy these days.
I have so many feelings coming up this week. My normal storm of cptsd is rearing it’s ugly head this week. Maybe last too. Can’t remember. Everything gets discombobulated and foggy. I lost track Of time. Reels play over and over. I’m there. But I’m not. I’m here. It’s hard to be in The present lately. I share this incase anyone else experiences this. My. God you aren’t alone. I feel like I’m pretty good at keeping up with methods and things such as that….. but sometimes…. It just ultimately sucks. There’s no other way to describe it. The waves are so strong, so large and you just keep getting pushed under. That’s where I am at.
And today, I realized an immense loneliness lays within me. And sadness. And grief. I’ve been abandoned by so many (not looking for sympathy) because of this illness. It really shapes and forms you. And conditional love is the worst. It’s been so prevalent in my life. And quite detrimental to me.
So many times I can dig within and find my reserves. I’m used to being solo in this land of one room….. but my battery has been so low. I’ve not had it in me. I feel so unloved. And so …. Much grief over that. By my mother, my husband, my sister and the list goes on. I know many of you get it. My mother didn’t even call to see how my Cleveland clinic trip went. Sigh. I could go on and on with the list of people that don’t care about me. It’s so….. upsetting to my system on so many levels. And I struggle to comprehend.
I know many of them do love. But they love me differently now. And, I don’t think I can open my heart anymore. It’s rarely worth it and causes me so much pain. Sometimes, you just want someone to hug you. Or hold your hand. And tell you pretty things. And…. I really have such a lack of that in my life. And I’m so tired of being reprimanded and scolded for being sick. By my family. By drs. By friends. The woman that disappeared in 2017, is never returning an unchanged woman. I literally was rejected by my family for this. It hurts. So bad. I know I have my children’s love. I feel that. I do. And a few friends. I feel it. But friends are fleeting and in general my situation is too heavy for most. Once I start sharing how I really feel, most close up. Just natural human self preservation. I get it. Also getting so bad with covid this year (you know my home healthcare says ‘hospice’ on the bill?) not that it was, but, it’s just…. It was a very heavy and scary spring for me. And it scared people off. For instance, one friend is neural retraining and asked me to not tell her I was having seizures etc.
like, ok. ….But, she’s allowed to vent to me about all that occurs in her life and issues. It’s so…. Mind jarring. We shouldn’t trauma dump. This i understand. But also, some of us are living through hell and just want to. Be heard. Family and drs certainly aren’t listening to some of us. Again, another conditional friendship. Especially when we just survived covid and 8 ambulances in one month. So sorry that me having seizures put you out. Like I literally had to watch what I say and protect her while I was struggling hard with unknown seizures. Um. Make it make sense!!!
Yay, more abandonment for a woman with so many wounds.
I just feel feelings tonight.
Sometimes it helps to have a witness when you feel such deep despondency. I’m so tired of being my own witness and main cheerleader. Somedays, I think the heartbreak I’ve experienced over all of this and family and friends strife etc…. Has fractured a part of my soul.
Or at least it feels that way.
I guess I keep sailing. Floating. Forever lost at sea.
I’ve recently had quite a few people say that they couldn’t do what I have and fill in the blank. Well meaning people. But it’s so triggering. People are asses. You shouldn’t say that to people who have been at this for 7 years (severely). Because they are real humans and have feelings too. And some of them are hanging on by threads at times.
Maybe thats what I want people to know,
As tears stream down my face…
I’m a real human and I have feelings.
My energy is not just for taking. And my feelings matter. I know it falls on deaf ears and blind eyes within my circle.
But, still I will say it here.
To attempt to satiate my very trodden soul.
Carly don't be sad
Life is crazy
Life is mad
Don't be afraid
Carly don't be sad
That's your destiny
The only chance
Take it, take it in your hands
Life is mad
Don't be afraid