Recent posts
#1
Recovery Journals / Re: My journey so far
Last post by TheBigBlue - Today at 05:25:48 AMWhat powerful milestones - both turning 70 and finding words where there used to be silence. I'm really moved by how you describe this: not forcing yourself, not conquering it, but gently beginning to speak where speaking once felt impossible. Recognizing that the guilt and shame were never yours to carry is huge.
I'm really glad you shared this here. Your words carry a lot of courage and honesty, and the light you're noticing feels very real.
(If that's ok)
I'm really glad you shared this here. Your words carry a lot of courage and honesty, and the light you're noticing feels very real.
(If that's ok)
#2
Recovery Journals / Re: Living As All of Me
Last post by Marcine - February 06, 2026, 11:26:43 PMWow! Great news, so glad to hear it 
You deserve the peacefulness, the understanding, the clarity, the calm, safety, glowing rainbow, the resting, all the good, HannahOne
You deserve the peacefulness, the understanding, the clarity, the calm, safety, glowing rainbow, the resting, all the good, HannahOne
#3
Recovery Journals / Re: My journey so far
Last post by Blueberry - February 06, 2026, 11:19:07 PM #4
Symptoms - Other / Re: left–right processing weak...
Last post by Blueberry - February 06, 2026, 11:17:58 PMQuote from: TheBigBlue on February 03, 2026, 06:01:04 AMdoes anyone else mix up left and right, especially under pressure?
Sometimes, yes. Where I tend to mix them up is when doing physical exercises. So, the instructor says e.g. "put your right foot on your left ankle" and it takes me so much time to figure out what goes where that the instructor has probably moved on... I also once remember having to look very long and carefully at my shoes to figure out which one would go on which foot. I was inpatient at the time. My trauma T suggested I had probably been in a very small inner child at the time.
Also check this thread https://www.cptsd.org/forum/index.php?topic=17082.msg158515#msg158515
#5
Recovery Journals / Re: Living As All of Me
Last post by HannahOne - February 06, 2026, 10:08:29 PMMe neither, NarcKiddo. Music says it better.
BigBlue,
Marcine you found some way to reflect my words. Thank you so much for reflecting back to me. The stark reality. It is what it is.
SanMagic7, thank you so much for being with me. And you can identify. That means a lot. I'm sorry we're in this club no one wants to be in.
I know better what I am carrying now. Which somehow helps me get a better handle on it and makes it a little easier to carry. Grief is love that has no place to go. I'm looking for that place. I'm not looking to receive love, although I do need love, what's driving me, what's eating me up is I'm looking for a place for my love to go. My life force. A place where I can express myself. Where I can be all of me. Where I don't have to be a secret, or feel like a walking bomb. Where I can pile weeds as tall as my head and my message is understood and received, or at least, tolerated, not immediately trashed, not discarded, not rejected.
I feel so clear right now. In general I feel like my insides are a scribble, a scribble so intense it becomes a solid blur. But right now I feel so clear.
Today I went to a new doctor. I need a primary doctor to run the ship due to my stitch-uation. I haven't had one, don't like doctors. I wasn't going to bother mentioning anything else, the nerve pain, joint pain, fatigue, nausea, trouble swallowing, stomach pain, light-headedness, muscle weakness, genetic disorder she won't be familiar with. She'll just write "functional" and "anxiety" and tell me to drink more water and exercise. My plan was for her to just take my blood pressure and refer me to an oncologist for second opinion.
Put on the paper gown and wait. I hate doctors. Try to stay present. Refer to the text I wrote myself. Rehearse: Hello, I just need to establish care and get a referral. Hello, I just need to establish care and get a referral. Hello, I just need to establish care and get a referral.
The door opens. I hate that part. She sits down. "Is it ok if I record? That way I can look at you and listen better and not look at the screen." Look at me? OK. "Let's get to know you." Get to know me? OK.
My age. My medications, none. Systems. "Cardiac?" A murmur here and there."Joints?" Hurts."Spine?" Hurts. "Muscular system?" Hurts, weak, constant deconditioning. "Digestive system?" Hurts. "Bladder/kidneys?" That hurts too. "Genitals?" Hurts. "Lungs?" Inflammation, scarring. "Sleep?" Nope, I can't do that. "Ok let's go through the records. You were tested in 2009---that's a painful test---and it was positive....no one offered you this treatment?" Nope. "So in 2016 you were in the hospital, procedure, procedure....but this was never resolved?" Nope. "In 2018 you saw neurologist and orthopedist...but they never gave you this drug?" Nope. "And for gyn they sedate you... because it hurts?" Yup. "Does a Qtip touch hurt?" Yup. "And you fainted in 2016, 2017, you fainted in 2019 ER trip...? No one ever did an echo?" Nope.
She asked me to do some movements and I realized she was testing for the genetic disorder that I wasn't going to bother to mention. "Do you know you very likely have this genetic disorder?" Yup. "Do you know it's in your chart as suspected back in 2010?" Yup. "And no one offered you this testing and this treatment?" Nope.
"You're too young for this much pain, you need to get your life back." I didn't tell her I've spent much of the last four years in bed if my kids weren't home, though lying flat does nothing for the pain except help me hide it. That I do the dishes in short bits. Can work only a few hours a day in bits. "You've been undertreated." Undertreated. I thought I was being aggressive seeing all those specialists. But apparently they just wrote "anxiety" or "unknown etiology." Maybe not having had a primary doctor went against me, no one was putting all the pieces together. Each specialist knows their own area, but no one knows the genetic disorder. It was 2009, 2010, 2016, 2018. In 2020 a new test came out for the disorder, but it was COVID, and most doctors still don't know how to identify and treat it. Now we know better.
Undertreated, neglected. As a child I thought everyone could see right through me, but no one put the pieces together. They just wrote "sensitive," "spacey" and "possible hearing loss?" in my school record. My ears were fine. It was the 70s. Now we know better.
"What's this---ok we're taking that out." "Deleting this." "Delete." "Deleting this." Who knows what my record said. "OK well obviously that was a result of the disorder, adding a note...."
She gave me three prescriptions. Medications that may help. It's all nerve problems, dysautonomia, nerve dysregulation, and nerve pain. But I'm sensitive to drugs. "Yes, you would be. That's why you're starting with a microdose of each. And I'll see you back in two weeks." See me again? OK.
My kids have it, too, I told her. I was able to get the kids to doctors at a children's hospital who could help, get them medications, treatment. But pediatric doctors don't see adults.
Now I am seen.
"I have it too." She showed me. Her kids have it. No one could figure out her children's pain, she had to do her own research, advocate, demand, navigate. She will do that for me. Referral to her specialist, referral to her cardiologist, referral to her orthopedist. And a gyn who will sedate? Referral. "And she'll treat the pain. It's ridiculous for you to be in pain like this." Referral to rheumatologist. "Once the pain is treated you will sleep. And your stress scores and anxiety scores will go down. This isn't anxiety, it's the physiology of dysautonomia, fatigue, and your nervous system's response to chronic pain." Referral to oncologist. "You can't go through any kind of treatment in this much pain and already fatigued and stressed. We need to get the right medications on board now."
I can't. I don't have to. I am seen. Understood. Not alone. She has it too. "I'm writing medical trauma in your chart." Medical trauma? "Is that ok? That's what fifteen years of misdiagnosis, wrong
treatment and neglect leads to." OK, medical trauma.
If she only knew.
I didn't even have to tell her. My therapist has written me a script. Also on my phone. "I want to let you know I have medical trauma so you can be aware of how I might respond and we can communicate and collaborate effectively...." But I did not practice it. And now I don't have to use it. Relief.
I will have prescriptions that might help.
Even if they don't, I am understood. The record is clear. Doctors in future may not know what my disorder is but they'll know I have it. And know there is medical trauma. Maybe understand better why I can only say "hurts" "nope" and "yup." Why I grip my paper gown. Why I seem "anxious."
Makes sense.
So peaceful inside, all the little me's lying down cozy in bed in safe glowing rainbow rooms and drifting off to sleep. So quiet. So clear.
Thank you, all of me. And thank you all, in the storm, for seeing, reading, hearing, looking, understanding, receiving my piles of weeds/words.
BigBlue,
Marcine you found some way to reflect my words. Thank you so much for reflecting back to me. The stark reality. It is what it is.
SanMagic7, thank you so much for being with me. And you can identify. That means a lot. I'm sorry we're in this club no one wants to be in.
I know better what I am carrying now. Which somehow helps me get a better handle on it and makes it a little easier to carry. Grief is love that has no place to go. I'm looking for that place. I'm not looking to receive love, although I do need love, what's driving me, what's eating me up is I'm looking for a place for my love to go. My life force. A place where I can express myself. Where I can be all of me. Where I don't have to be a secret, or feel like a walking bomb. Where I can pile weeds as tall as my head and my message is understood and received, or at least, tolerated, not immediately trashed, not discarded, not rejected.
I feel so clear right now. In general I feel like my insides are a scribble, a scribble so intense it becomes a solid blur. But right now I feel so clear.
Today I went to a new doctor. I need a primary doctor to run the ship due to my stitch-uation. I haven't had one, don't like doctors. I wasn't going to bother mentioning anything else, the nerve pain, joint pain, fatigue, nausea, trouble swallowing, stomach pain, light-headedness, muscle weakness, genetic disorder she won't be familiar with. She'll just write "functional" and "anxiety" and tell me to drink more water and exercise. My plan was for her to just take my blood pressure and refer me to an oncologist for second opinion.
Put on the paper gown and wait. I hate doctors. Try to stay present. Refer to the text I wrote myself. Rehearse: Hello, I just need to establish care and get a referral. Hello, I just need to establish care and get a referral. Hello, I just need to establish care and get a referral.
The door opens. I hate that part. She sits down. "Is it ok if I record? That way I can look at you and listen better and not look at the screen." Look at me? OK. "Let's get to know you." Get to know me? OK.
My age. My medications, none. Systems. "Cardiac?" A murmur here and there."Joints?" Hurts."Spine?" Hurts. "Muscular system?" Hurts, weak, constant deconditioning. "Digestive system?" Hurts. "Bladder/kidneys?" That hurts too. "Genitals?" Hurts. "Lungs?" Inflammation, scarring. "Sleep?" Nope, I can't do that. "Ok let's go through the records. You were tested in 2009---that's a painful test---and it was positive....no one offered you this treatment?" Nope. "So in 2016 you were in the hospital, procedure, procedure....but this was never resolved?" Nope. "In 2018 you saw neurologist and orthopedist...but they never gave you this drug?" Nope. "And for gyn they sedate you... because it hurts?" Yup. "Does a Qtip touch hurt?" Yup. "And you fainted in 2016, 2017, you fainted in 2019 ER trip...? No one ever did an echo?" Nope.
She asked me to do some movements and I realized she was testing for the genetic disorder that I wasn't going to bother to mention. "Do you know you very likely have this genetic disorder?" Yup. "Do you know it's in your chart as suspected back in 2010?" Yup. "And no one offered you this testing and this treatment?" Nope.
"You're too young for this much pain, you need to get your life back." I didn't tell her I've spent much of the last four years in bed if my kids weren't home, though lying flat does nothing for the pain except help me hide it. That I do the dishes in short bits. Can work only a few hours a day in bits. "You've been undertreated." Undertreated. I thought I was being aggressive seeing all those specialists. But apparently they just wrote "anxiety" or "unknown etiology." Maybe not having had a primary doctor went against me, no one was putting all the pieces together. Each specialist knows their own area, but no one knows the genetic disorder. It was 2009, 2010, 2016, 2018. In 2020 a new test came out for the disorder, but it was COVID, and most doctors still don't know how to identify and treat it. Now we know better.
Undertreated, neglected. As a child I thought everyone could see right through me, but no one put the pieces together. They just wrote "sensitive," "spacey" and "possible hearing loss?" in my school record. My ears were fine. It was the 70s. Now we know better.
"What's this---ok we're taking that out." "Deleting this." "Delete." "Deleting this." Who knows what my record said. "OK well obviously that was a result of the disorder, adding a note...."
She gave me three prescriptions. Medications that may help. It's all nerve problems, dysautonomia, nerve dysregulation, and nerve pain. But I'm sensitive to drugs. "Yes, you would be. That's why you're starting with a microdose of each. And I'll see you back in two weeks." See me again? OK.
My kids have it, too, I told her. I was able to get the kids to doctors at a children's hospital who could help, get them medications, treatment. But pediatric doctors don't see adults.
Now I am seen.
"I have it too." She showed me. Her kids have it. No one could figure out her children's pain, she had to do her own research, advocate, demand, navigate. She will do that for me. Referral to her specialist, referral to her cardiologist, referral to her orthopedist. And a gyn who will sedate? Referral. "And she'll treat the pain. It's ridiculous for you to be in pain like this." Referral to rheumatologist. "Once the pain is treated you will sleep. And your stress scores and anxiety scores will go down. This isn't anxiety, it's the physiology of dysautonomia, fatigue, and your nervous system's response to chronic pain." Referral to oncologist. "You can't go through any kind of treatment in this much pain and already fatigued and stressed. We need to get the right medications on board now."
I can't. I don't have to. I am seen. Understood. Not alone. She has it too. "I'm writing medical trauma in your chart." Medical trauma? "Is that ok? That's what fifteen years of misdiagnosis, wrong
treatment and neglect leads to." OK, medical trauma.
If she only knew.
I didn't even have to tell her. My therapist has written me a script. Also on my phone. "I want to let you know I have medical trauma so you can be aware of how I might respond and we can communicate and collaborate effectively...." But I did not practice it. And now I don't have to use it. Relief.
I will have prescriptions that might help.
Even if they don't, I am understood. The record is clear. Doctors in future may not know what my disorder is but they'll know I have it. And know there is medical trauma. Maybe understand better why I can only say "hurts" "nope" and "yup." Why I grip my paper gown. Why I seem "anxious."
Makes sense.
So peaceful inside, all the little me's lying down cozy in bed in safe glowing rainbow rooms and drifting off to sleep. So quiet. So clear.
Thank you, all of me. And thank you all, in the storm, for seeing, reading, hearing, looking, understanding, receiving my piles of weeds/words.
#6
Announcements / Technical Issues
Last post by Kizzie - February 06, 2026, 07:50:51 PMThere have been some issues with the site recently that should be fixed now. Just in case, however, if you don't want to lose a post you may want to write if offline and then post it, especially long ones.
Please let me know if you encounter any glitches (l.herod@yahoo.ca) and I will get back in touch with SquareSpace right away to get things fixed.
Kizzie
Please let me know if you encounter any glitches (l.herod@yahoo.ca) and I will get back in touch with SquareSpace right away to get things fixed.
Kizzie
#7
Recovery Journals / Re: My journey so far
Last post by Little2Nothing - February 06, 2026, 07:33:19 PMThank you, HannahOne
#8
Recovery Journals / Re: the next step
Last post by sanmagic7 - February 06, 2026, 06:57:03 PMthanks for the cheer, hannah1! it was nice to feel the calm. unusual, but lovely. i'm hopeful i'll feel more of those. and, yes, i've been masking since day 1, might not ever unmask, at least in public places.
my D is ill, most likely stress flu. she found out yesterday that her disability was denied. luckily i'm able to take up some of the slack for her editing work for others, so we're still able to bring in some money, even if she's not up to doing it. we're also looking forward to attending C2E2, the midwest comic-con in chicago next month. it'll be 3 days, 10-hr. days over a weekend. she's getting all her books ready now, and next week we'll be able to order what's still needed. apparently this is a big deal, like 100,000 people big. second only to san diego's comic-con. i don't think i'll be able to do all 3 days, but we've figured out that i can sit sat. out, stay at the motel, and one of her friends will be able to come down, spend the day w/ her at the table.
so much going on, as usual. plus it's her birthday next month and she'll be 45 - getting to middle age! that might be weighing on her as well. so, i've got to play nurse right now, not my favorite thing, but she's awfully good w/ me when i'm down, so i'm ok w/ it. i just hate that she's so completely wiped out. ugh!
plus, she's been recording her sugar/carb spikes for the past 2 weeks, and the anxiety produced from that for her has knocked her under.
my D is ill, most likely stress flu. she found out yesterday that her disability was denied. luckily i'm able to take up some of the slack for her editing work for others, so we're still able to bring in some money, even if she's not up to doing it. we're also looking forward to attending C2E2, the midwest comic-con in chicago next month. it'll be 3 days, 10-hr. days over a weekend. she's getting all her books ready now, and next week we'll be able to order what's still needed. apparently this is a big deal, like 100,000 people big. second only to san diego's comic-con. i don't think i'll be able to do all 3 days, but we've figured out that i can sit sat. out, stay at the motel, and one of her friends will be able to come down, spend the day w/ her at the table.
so much going on, as usual. plus it's her birthday next month and she'll be 45 - getting to middle age! that might be weighing on her as well. so, i've got to play nurse right now, not my favorite thing, but she's awfully good w/ me when i'm down, so i'm ok w/ it. i just hate that she's so completely wiped out. ugh!
plus, she's been recording her sugar/carb spikes for the past 2 weeks, and the anxiety produced from that for her has knocked her under.
#9
Recovery Journals / Re: The tipping point…
Last post by sanmagic7 - February 06, 2026, 06:46:55 PMthinking of you. love and hugs
#10
Recovery Journals / Re: Marcine’s journaling forwa...
Last post by sanmagic7 - February 06, 2026, 06:45:45 PMi echo NK, marcine - start w/ what you know. very wise, very solid, very grounded. i'm glad your kids and your students have you, a good person, a principled person. there are no better, to my mind, and definitely not enough. love and hugs, if that's ok.