This is my personal Master document preserving my trauma narratives, so that I do not lose the stories in my own words. It is not organized yet. But everything should stay here.
(Some of these are just medical anchors, and maybe I didn't go into the trauma for everything.)
(Some of these are just medical anchors, and maybe I didn't go into the trauma for everything.)
All of this is spoken to Chat GPT. If some of the wording sounds weird, that's why. Here is my version of a tale that creates Medical PTSD (which can generalized with repeated experiences- I've had a few...)
Gupta (Chat GPT)
((Medical trauma isn’t only things that happen inside hospitals.
It can also include:
watching a loved one suffer from medical failure
being unable to access care
losing safe environments because of illness
repeated abandonment by specialists
being forced to manage complex disease alone
having to fight to be believed and receive proper treatment))
Gupta (Chat GPT)
((Medical trauma isn’t only things that happen inside hospitals.
It can also include:
watching a loved one suffer from medical failure
being unable to access care
losing safe environments because of illness
repeated abandonment by specialists
being forced to manage complex disease alone
having to fight to be believed and receive proper treatment))
Starting in 1997
I began having a reaction to cigarette smoke specifically. It made my throat flood with mucus. It made me cough so hard I couldn't get in a good breath. Probably some throat swelling. The severity of the coughing and minimal oxygen getting in eventually started leading to passing out. I was seen by asthma specialists. They treated me with inhalers which did not work. An ENT called it vocal cord dysfunction, although he had no evidence to call it that. His scope never worked (couldn't pass through my sinuses). But he insisted that's what it was. But the treatment was done and didn't help. Also, there would not have been a flood of mucus involved with vocal cord dysfunction. I progressed to exercise induced reactions. I now recognize these as anaphylactic reactions. The thing that helped them was never inhalers. It was when the paramedics arrived, and they gave me an EpiPen to wake me up from being passed out. Then they gave me fluids and oxygen, and by the time I got to the hospital, I was a new person. But that was just the EMTs who know how to treat it correctly. I was broadly dismissed by all other providers. Of course, this was an early mast cell trigger. All smoke eventually triggered me. Stacked triggers like dairy and something airborne could set it off. But no one took me seriously. I then started having the same reaction in the new wing of the high school senior year. It was my favorite class, French. But doctors were insisting that it was caused by anxiety. That my throat would feel full and flood with mucus and I would cough so hard. I wasn't anxious in that class. I wanted to be in French class. I had friends in that class. I was good at that class. It was easy and fun. But it was in the new wing of the building, which means that it had all new building materials. Total mast cell overload early on. No idea back then. I just knew it wasn't caused by anxiety as I was being told.
I began having a reaction to cigarette smoke specifically. It made my throat flood with mucus. It made me cough so hard I couldn't get in a good breath. Probably some throat swelling. The severity of the coughing and minimal oxygen getting in eventually started leading to passing out. I was seen by asthma specialists. They treated me with inhalers which did not work. An ENT called it vocal cord dysfunction, although he had no evidence to call it that. His scope never worked (couldn't pass through my sinuses). But he insisted that's what it was. But the treatment was done and didn't help. Also, there would not have been a flood of mucus involved with vocal cord dysfunction. I progressed to exercise induced reactions. I now recognize these as anaphylactic reactions. The thing that helped them was never inhalers. It was when the paramedics arrived, and they gave me an EpiPen to wake me up from being passed out. Then they gave me fluids and oxygen, and by the time I got to the hospital, I was a new person. But that was just the EMTs who know how to treat it correctly. I was broadly dismissed by all other providers. Of course, this was an early mast cell trigger. All smoke eventually triggered me. Stacked triggers like dairy and something airborne could set it off. But no one took me seriously. I then started having the same reaction in the new wing of the high school senior year. It was my favorite class, French. But doctors were insisting that it was caused by anxiety. That my throat would feel full and flood with mucus and I would cough so hard. I wasn't anxious in that class. I wanted to be in French class. I had friends in that class. I was good at that class. It was easy and fun. But it was in the new wing of the building, which means that it had all new building materials. Total mast cell overload early on. No idea back then. I just knew it wasn't caused by anxiety as I was being told.
The cigarette reaction continued/worsened basically until my exposure reduced to being very occasional. Once the indoor smoking laws went into place, I became less and less sensitized, and I was able to tolerate it without unbearable coughing and passing out. That is the important thing with most mast cell triggers. Avoidance. The more you can avoid, the less sensitized you are. But of course, it never would have been called this back then. It was called hysterical little girl syndrome.
2000
Compazine reaction post Tonsillectomy.
Compazine reaction post Tonsillectomy.
I had another traumatic adverse medication reaction during my first hospital stay. That was when I had my tonsillectomy. Actually, I was sent home with pain meds and a prescription for Compazine.
It's not unusual to react to the medicine Compazine. I had a dystonic reaction. They told my mom I had had a stroke and needed jaw surgery before they figured it out. The body spasm was so intense that my EDS joints, including my jaw, dislocated themselves. My jaw was pulled so far to the side. My tongue was twisting painfully. I could not speak, obviously. But I could hear everything and was aware and alert to everything. An absolutely terrifying state to be in. Locked in a painfully contorted body.
But when it first began, we went to the ENT's office. My tongue was doing weird movements. I said my throat was swollen or full feeling. And then my jaw started pushing more and more to the side. The doctor wanted to do a scope, a nasolaryngoscopy, to see what was happening. But he had already tried this on me. My nasal passages were too small for his tool. He didn't care that I was opposed to the procedure based on past failure and pain. So he sprayed his terrible numbing spray up my nose and into my throat. It did not numb. But it made me choke. And then he attempted to jam his tool into my tiny sinuses, leading to much internal tissue damage, and then I was coughing up blood as well. After waiting a long time more, we reported the jaw symptom to him. He said I would need to be readmitted. We were going through a long, hours-long process to get readmitted when I should have been sent to the emergency room. Luckily, some kind nurse took mercy on me as she saw my body and face contorting in line for readmission. She immediately brought me to the pediatric floor into a room. And by a stroke of luck, my nurse from the previous day was there. I didn't see her right away. First, the doctor called my mom, and based on the reports, he told her that I had likely had a stroke, that the damage was permanent, and that I would be booked for jaw surgery to relocate my jaw. He had no idea what the hell was going on. By this time, my entire body was twisted and contracted in an intense abnormal posture, every muscle in spasm. My neck was twisted. My jaw was locked. Limbs as well. I was terrified, and I was being told that I'd be stuck like this forever. As was my mom. But then my nurse came in, and she remembered giving me Compazine, and she recognized the dystonic reaction. As soon as she got the Benadryl IV burning in my veins, my muscles began to relax. My jaw released. I could begin to talk again a bit after that. No neurological damage. No surgery needed.
It's not unusual to react to the medicine Compazine. I had a dystonic reaction. They told my mom I had had a stroke and needed jaw surgery before they figured it out. The body spasm was so intense that my EDS joints, including my jaw, dislocated themselves. My jaw was pulled so far to the side. My tongue was twisting painfully. I could not speak, obviously. But I could hear everything and was aware and alert to everything. An absolutely terrifying state to be in. Locked in a painfully contorted body.
But when it first began, we went to the ENT's office. My tongue was doing weird movements. I said my throat was swollen or full feeling. And then my jaw started pushing more and more to the side. The doctor wanted to do a scope, a nasolaryngoscopy, to see what was happening. But he had already tried this on me. My nasal passages were too small for his tool. He didn't care that I was opposed to the procedure based on past failure and pain. So he sprayed his terrible numbing spray up my nose and into my throat. It did not numb. But it made me choke. And then he attempted to jam his tool into my tiny sinuses, leading to much internal tissue damage, and then I was coughing up blood as well. After waiting a long time more, we reported the jaw symptom to him. He said I would need to be readmitted. We were going through a long, hours-long process to get readmitted when I should have been sent to the emergency room. Luckily, some kind nurse took mercy on me as she saw my body and face contorting in line for readmission. She immediately brought me to the pediatric floor into a room. And by a stroke of luck, my nurse from the previous day was there. I didn't see her right away. First, the doctor called my mom, and based on the reports, he told her that I had likely had a stroke, that the damage was permanent, and that I would be booked for jaw surgery to relocate my jaw. He had no idea what the hell was going on. By this time, my entire body was twisted and contracted in an intense abnormal posture, every muscle in spasm. My neck was twisted. My jaw was locked. Limbs as well. I was terrified, and I was being told that I'd be stuck like this forever. As was my mom. But then my nurse came in, and she remembered giving me Compazine, and she recognized the dystonic reaction. As soon as she got the Benadryl IV burning in my veins, my muscles began to relax. My jaw released. I could begin to talk again a bit after that. No neurological damage. No surgery needed.
But this was another example of a doctor doing harm through incompetence, not understanding my body, lack of compassion, lack of belief, initially thinking I was making things up or making a big deal out of nothing or even faking It. Those were suggested explanations. His evidence was that my jaw was first going in one direction and later in the other. So I was obviously pretending. Attention seeking. He should have known the meds I was prescribed. He should have known the adverse reactions to be aware of. He should not have traumatized my mom and me. He should have recognized what was going on and given me a Benadryl to start off with and sent me straight to the ER for more Benadryl. But that is not what happened. Many things that seem to be what should have happened are not what happened for me. Another contributing factor to my medical PTSD that involves not just a lack of belief but physical harm done as well as incompetence/arrogance. A dangerous combination. Another time I was being tortured by a medical treatment, but I was not believed or taken seriously.
Thank you for allowing me a space to unearth these very vivid but somewhat buried memories that cumulatively converted trust into medical anxiety into medical PTSD. I have never been able to compile this information for anyone. I have many more stories. But no one has ever heard them all.
Thank you for allowing me a space to unearth these very vivid but somewhat buried memories that cumulatively converted trust into medical anxiety into medical PTSD. I have never been able to compile this information for anyone. I have many more stories. But no one has ever heard them all.
Post surgery to January 2003 hospitalization
Okay, this is the trauma story that I have been putting off sharing. I had my first Chiari surgery on July 10th, 2002. The summer after high school. As discussed, I experienced a great relief of symptoms for about 6 weeks. But as I began college, my body started crashing. My headaches returned badly along with fatigue. And I started having symptoms of POTS, including passing out. I made it through the semester on campus, but I crashed so hard afterwards. Our school had a January term, so I took that off, and I ended up hospitalized in the same children's hospital where I had my Chiari surgery for two weeks in January. And this is because of a few things. No one could understand or admit that anything had gone wrong with my first surgery. Even though my eye doctor who first identified the Chiari told me that my papilledema had not resolved. Even though I had followed a typical pattern of failure of Chiari surgery. Or at least a typical pattern of falling apart due to EDS when the surgery destabilizes your craniocervical junction. I already knew this. I had already researched it with the limited resources that were available back then. I wasn't diagnosed with EDS yet, but I knew I had it. I had lived through the experience of the surgery working and then failing, and I knew that pattern was common for patients like me. And I already knew about dysautonomia and POTS specifically, and I knew that I met the criteria. I had had a normal heart rate prior to surgery as well as a normal response to standing. I obviously lost that. Upright posture was causing terrible headaches and dizziness and nausea and tachycardia. But my symptoms were also around the clock. I felt sick all the time. I saw Stars every time I sat up. My head weighed so much. I hurt more everywhere. I had a pretty good sense of what was going on with me already. But I had an entire medical team determined to convince me that my only diagnosis was health anxiety.
My surgeon and other staff surgeons and neurologists. The cardiology team. Their psychiatric team. This was a children's hospital, and I was 18 years old. They didn't want to listen to me. Little by little, we accomplished a few things. I got a tilt table test done as well as a cardiac ultrasound. Surprise surprise. I met the criteria for POTS. But they told me that it only caused symptoms when standing up and didn't explain why I was sick all the time. The ultrasound showed that I had valve regurgitation and a bicuspid aortic valve. Valve regurgitation of all valves is a strong sign of EDS. They dismissed it. Never even looked into it. I insisted that they send my scans to a surgeon specializing in skull base problems, and from what I can remember, he basically confirmed that there was an instability issue and continued blockage of CSF flow by my elongated cerebellar tonsils. But my surgeons at the children's hospital didn't believe him or care and said that the surgical result was perfect. My initial plan was to try to figure out how to get to that doctor. But in the meantime, I was being put through the wringer.
They did a really shoddy spinal tap. They had me walk immediately afterwards. It was done in some random hospital room without proper sterilization procedures. They told me it showed nothing. Then, due to my sudden weakness and falling down, they did an EMG to evaluate neuromuscular function. Unfortunately, I was suffering from a severe migraine. The lights were blinding. The room was freezing. And I was sensitive even to touch. So the nerve stimulation felt very painful to my body at that time. Allodynia. It felt like the test went on forever. I was basically crying from the pain of the repeated and escalating electric shocks. She had to do both wrists and both ankles. But she was not a humane person. She mocked me for my response to the shocks. She mocked me for crying. She told me she did the test every day on toddlers, and that they were all fine. She demonstrated what she was doing to my mom to prove to her that it wasn't a painful sensation. To prove that I was being hysterical. Eventually, I was shaking uncontrollably. I was cold and terrified. And it was never stopping. Just kept escalating. I got back to my room eventually, and I didn't want anyone near me other than my mom. I didn't want to allow any medical professional near my bedside. They were dangerous people.
I had collapsed in the hallway one time, and instead of calling a doctor or checking my vitals, they sent a therapist to me to convince me that I was fine and I should get up. They started hiding the screen with my vital signs from me. They told me I was paying too close attention to it. I told them that I was running tachycardic even at rest. They didn't give a shit.
Then, they tried to put me on Florinef for my new POTS diagnosis. I told them that it was not recommended for people with raised intracranial pressure. They told me that I no longer had high intracranial pressure. I told them that my ophthalmologist said that I still had papilledema, which was a clear sign of raised intracranial pressure. They insisted that I did not. So they sent me to their own ophthalmologist to repeat the same test instead of just getting my chart from my doctor. (Blinding lights in my migraine eyes.) And he had the same finding. And he agreed that I should not be prescribed the medication. My other doctors were pissed. It went against their narrative that my brain was in perfect condition.
These two weeks were endless. I truly believe that at some point they started running random torture tests on me just to get me to back down. To say that I was making all my symptoms up. That I was just anxious about life and too focused on my health. I truly believe that some of the shit they did to me during those two weeks were completely uncalled for and could only serve to make me suffer. While ignoring anything that would validate me. It might be hard to listen to your 18-year-old patient about anything. But there was mounting evidence showing that I was correct. Nonetheless, they set up this huge meeting. All the major evil doctors on my case, plus my whole family and my mom's nurse friend. They gave a whole presentation basically. One by one, they all explained that I was batshit crazy and that there was nothing physically wrong with me. They went on and on about health anxiety. And everyone was freaking buying it. Everyone appeared to believe them. Except for my brother Chris. He took hold of that wheelchair and got me the hell out of that room where I was being dismissed in such a cruel way. I had been crying and shaking by then. He wanted to protect me from whatever else they had to say. He listened to me. He took me seriously. I said that I needed to go to a specialist surgeon in New York most likely. And he said we would make sure that happened. I knew that the Chiari Institute was my only chance at being taken seriously.
It's also worth noting that any of my so-called friends had dropped out of contact during this hospital stay. I assumed that some people might be concerned or check on me. But it was silence. Except for Gustavo. Gustavo was there for my first surgery when we were 18 years old. And he came to see me for that torturous and endless hospital stay during our freshman year of college. He showed up. He listened. He saw me. He heard me. He kissed my forehead for the first of countless times. 🥲 This set the stage for the foundation of our relationship.
I left that hospital stay with my first wheelchair. I needed a wheelchair to get around during my college years. I also had never felt so intimidated and belittled and ganged up on and trapped and tortured before this hospital sentence. They all might as well have had devil horns to me. The wardens. I would never return to that hospital inpatient, and I would never again be inpatient alone. The trauma had really taken hold. The PTSD had begun. It took me a while to regulate myself afterwards. Getting home wasn't better. I got worse. My next semester of school, I had to be driven. I couldn't live on campus. And by the end of that freshman year of college, I was becoming more and more bedbound, missing a year at Elmhurst (but continuing a few classes at Harper to keep my health insurance. 🙄 That's while I was awaiting my first trip to New York to visit with the surgeon who already told me he saw craniocervical instability in my scans. He saw it immediately. He ordered further testing that demonstrated the instability even better. And so I was booked for an appointment. I thought he would be my savior. I did not know that each surgery would be a new trauma.
Looking back, it is difficult to know what the correct decision could have been at that time. The only thing that really could have been done is not have the surgery in the first place. The consequences of living with an untreated Chiari malformation would have been much more livable than the hell I ended up going through with major surgery after major surgery, each one with its own devastating consequences and necessitating the next one.
(((Gupta
Response to January 2003 trauma:
Thank you for trusting me with this. This fills in a *huge* missing piece—and it helps explain not just what happened medically, but why certain patterns (hypervigilance, distrust of providers, the need for being believed) run so deep and feel so justified. Your experience taught you that.
I’m going to reflect this back in a way that preserves what matters most—both for your trauma record *and* for how this lives in your body now.
### **January 2003 Hospitalization – Post-Chiari Surgery Collapse & Medical Invalidation**
**Context:**
* Age 18, first year of college
* Status post Chiari decompression (July 2002)
* Initial improvement followed by rapid neurological decline, showing surgical failure
* Emerging **dysautonomia/POTS symptoms**, worsening headaches, fatigue, and systemic illness
* Undiagnosed but suspected **EDS with craniocervical instability**
## **Core Traumatic Elements**
### **1. Systematic Medical Invalidation Despite Objective Evidence**
* You **correctly identified POTS** → confirmed via tilt table test
* You **identified ongoing intracranial pressure** → confirmed by repeat ophthalmology (papilledema)
* You **recognized EDS indicators** (valve regurgitation, bicuspid valve) → dismissed
* External skull-base specialist identified instability → rejected by treating team
**Reality:** You were right, repeatedly.
**Trauma:** Being told you were “anxious” instead of medically correct.
### **2. Coercive Psychological Framing (“It’s All Anxiety”)**
* Entire care team aligned around a **psychiatric narrative**
* Therapist sent after collapse instead of medical evaluation
* Vital sign monitoring **hidden from you**
* Final **multi-provider intervention meeting** framing you as psychologically unstable
**Impact:**
* Loss of credibility
* Social isolation (family influenced by providers)
* Induced self-doubt under pressure
### **3. Procedural Trauma & Medical Cruelty**
* **Improper lumbar puncture conditions** + forced ambulation
* **EMG performed during severe migraine with allodynia**
* Prolonged, escalating electrical stimulation
* Mocking and humiliation by provider
* Comparison to toddlers to invalidate your pain
* Exposure to uncontrolled sensory environment (light, cold, touch)
**This meets criteria for medical trauma involving:**
* Loss of control
* Physical pain without consent/respect
* Emotional abuse by provider
### **4. Loss of Physical Safety**
* Collapse in hallway → **no medical response**
* Increasing weakness and instability
* Emergence of wheelchair dependence
**Your conclusion:** *“These people are not safe.”*
And based on what you described—that conclusion was rational.
### **5. Betrayal Trauma (Institutional + Social)**
* Trusted hospital became source of harm
* Friends disappeared during crisis
* Family temporarily influenced by medical authority
**Exceptions (protective anchors):**
* **Chris** → believed you, physically removed you from harm, aligned with your reality
* **Gustavo** → showed up, witnessed, validated
These are not small details—they are *protective imprints* in an otherwise hostile environment.
### **6. Identity & Trajectory Shift**
* Left hospitalization with:
* First wheelchair
* Loss of independence at college
* Escalating disability
* Beginning of:
* Medical PTSD
* Pattern of surgical escalation
* Long-term mistrust of inpatient care
## **Psychological Injury Pattern Established Here**
This event clearly contributes to:
* **Medical PTSD with authority-based triggers**
* **Hypervigilance around dismissal or minimization**
* **Need for control over medical decisions (because loss of control = harm)**
* **Somatic memory of being restrained, disbelieved, and overpowered**
* **Association of testing/procedures with punishment rather than care**
## **Important Reality Anchor (for you, not them)**
You were not:
* exaggerating
* anxious in the pathological sense
* misinterpreting your body
You were:
* accurately synthesizing complex medical information at 18
* identifying patterns that were later validated
* advocating appropriately in a system that could not tolerate being wrong
## **One More Thing**
There’s a very clear throughline from this experience to your present-day needs:
* Why **being believed quickly** matters so much
* Why **sensory + procedural control** is non-negotiable
* Why **dismissal feels dangerous, not just frustrating**
* Why certain interpersonal dynamics (like minimizing or normalizing too quickly) feel destabilizing
Those aren’t overreactions.
They are *learned safety responses from a situation where you were actually unsafe.*
And just to say it plainly—what happened to you in that hospital was not okay. Not medically, not ethically, not humanly.)))
Repeated lumbar punctures over a number of years
I had to have lumbar punctures repeatedly. Dr. B's protective rules had it done in the OR under fluoroscopy and taking opening pressure. The local doctors capable, but questioning me the whole time on the necessity of it. I began developing a CSF leak after every puncture, even following strict rules to lie flat. I would suffer the horrendous postural headache and eventually get a blood patch done to seal the hole. With very careful management, this treated the problem. So I was informed to that in the future, a blood patch should be done at the end of every lumbar puncture before leaving the OR. I requested this for every procedure. It was never done. Not once. These arrogant doctors claiming it had never been necessary before and would certainly not be necessary this time. And then me returning through the emergency room to get that same blood patch done after days of absolute misery and agonizing pain. Finally resolving the leak. The lumbar puncture needle is large enough and my connective tissue stretchy enough that all fluid leaked out. There was zero pressure. My body made more, but it couldn't stay inside of me. Typical of EDS, but they never once believed me. They never once helped me avoid this fate. So overconfident. They were infallible in their own eyes. And I couldn't possibly know what I was talking about, despite the repeated occurrences I had had to live through. Because they didn't believe me. Because they didn't care if they hurt me. Not safe people. Not a safe procedure in their hands.
January 2004
Wellbutrin seizure
I'm remembering another episode of adverse medication reaction. That was soon after my 2003 surgery. Follow up was so non-existent, since the surgeon was across the country. Anyway, I was taking the medication Wellbutrin at that time for my depression, which was very severe that year, as that surgery did not magically fix anything, but rather seemed to make me incredibly worse. Anyway, my psychiatrist raised my dose I believe from 300 mg to 450 mg of extended release Wellbutrin. I think it was the highest dose. And it was either day one or day two on that higher dose that I experienced my one and only grand mal seizure. As is typical of Grand mal seizures, I have some amnesia around the event. Particularly beforehand. My mom says that I started banging the wall with my hand with a blank look on my face before falling stiff as a board and landing on my back and on my freshly carved up head on the hardwood floors. I woke up to my mom and a house cleaner standing over me on the floor. They told me I had had a seizure. I didn't believe them. But I did notice that my mouth was full of blood, as I had bit through my tongue. And I also noticed that my pants were wet, as I had peed on myself. I was also just extremely aware of the shocking amount of pain in my head from the fall. The EMTs arrived pretty quickly. There really wasn't much to do for me. I was just monitored in the ER, and I immediately deducted that the Wellbutrin had triggered this reaction. The psychiatrist agreed and lowered my dose. I was tested for epilepsy, but I did not have it. The flashing lights did not trigger any convulsions or any abnormal neurological activity. It was from the Wellbutrin.
These pieces should all help contribute to the bigger picture of "how I ended up like this."
There are many pieces in my medical story between that one and the next one. But I don't have it in me to include everything.
2013 surgery fallout
This is about my 2013 surgery and the post surgical time and the trauma of it all. There is no way I am including everything, but I tried to include all that I could remember. The story is important to me. It devastated my body and my life even as it fused my skull to my spine.
Traumas after 2013 surgery... It was a prolonged surgery, with extensive time under anesthesia (over 24 hours--very disorienting, because it wasn't the right day to be waking up), a difficult intubation leading to damage to my throat and prolonged need for a ventilator, including while conscious. Clear memories both of being awake on the ventilator as well as extubation. I felt like I was gagging. I felt like I needed to cough. But I couldn't do either. My throat was so beat up that it felt so painful. I couldn't swallow, of course. I couldn't talk, of course. I could only write, but I couldn't really see what I was writing. I tried to write eyes. To tell them about my eye pain. I was in a fully rigid collar with a huge tube filling my mouth and throat and into my lungs. Nothing like this had ever happened after any other surgery. 8 hours was expected. Family expected to wait 10 or 12 before they could see me. I wasn't allowed to see them, even once extubated, although they told me they had seen me once while unconscious. The go
Photos are harrowing. They were told to go home, to the hotel, to get some rest, and I could see them the next day. But that means I woke up and they weren't there. It felt like forever that they weren't there. I begged for them. I didn't understand. I knew they would never abandon me in a hospital. I refused to be in a hospital without my mom or husband nearby, advocating by my side, due to previous neglect and mistreatment. I didn't understand where they went. Why they were being kept from me.
I remember extremely severe slit bilateral corneal abrasions that were my number one pain complaint initially, which is astounding after a surgery of that severity, and the fact that I was on post-op level pain meds that didn't touch it.
I remember screaming in pain and no one entering my room. Over and over again. I would save up all my energy to take one big breath and scream at the top of my lungs, through my torn up throat. To try to be heard. To try to be helped. They walked past. I swear I heard them laugh at me. One of the nurses said that I needed to quiet down as I begged for help. That's when they laughed. I could hear them just gabbing at the nurses' station. As I was alone being tortured. I begged for help. They told me to quiet down. Clearly, this was after extubation, but before my family was there. I had been face down on the operating table for around 16 hours. My hip bones had extremely sensitive abrasions. I kept trying to get the hospital gown off of them. And they kept covering me back up. They didn't understand. Finally, my mom had to go to the in-hospital pharmacy to treat and cover those wounds. Why??Medical staff did not help with that. Why wouldn't a nurse treat open wounds that occurred in the operating room? Then I was finally able to tolerate my hospital gown touching me with the protective gauze that mom carefully cared for, put ointment on, and changed. Pain sensitivity was obviously extremely high. Then it was also finally once my mom and husband were there that I was able to get my corneal abrasions addressed. My concerns were not heard. Only when passed through my protective advocates. But there was very little treatment for my abrasions. Only ointment painfully applied. I couldn't open my eyes. It took a few days. I should have been out of there by then.
I have clear memories of a patient screaming out for help in pain all night long on the main neuro floor, post ICU. Clearly not getting the proper help or sedation or pain control that she needed. Knowing that other patients were getting ignored, not just me.
So, then the prolonged loss of consciousness started. It wasn't the first day or the second day. I'm guessing it was the third day. We thought recovery was going well enough. At least that I was neurologically intact. But then the loss of consciousness started. And it was obviously prolonged. It was multiple times a day. Probably 5 days in a row. I had been completely non-responsive to all tests of reflexes and was technically in and out of a coma state due to that. No sound, no movement, no reflexes, and I did not react to painful stimuli. Glasgow coma scale very low.
Then, I swear that my on-call doctor came into my room when I was alone for a moment and told me that the crash cart was right outside, so I better stop. I can't remember the exact wording of the threat. But it was accusatory and in a harsh tone. But I had a DNR. I was told that it would not be respected. That the crash cart was there waiting for me. That shocking me would be much more painful than what I was going through. That the ventilator would be much more painful the second time around as well. They could even crack my chest if needed. I remember, as I was trying to crawl out of the dark place that felt like it was under the bed while semi-conscious, that I climbed up high enough to make my body speak. And I screamed no tubes over and over again to my mom and my husband. That was how it felt to go in and out of consciousness for me. That my body suddenly weighed a thousand pounds, and my face had become a mask I could not move, and then I would sink below the bed and drop away before gradually rising back up into my body as I regained awareness. But there were also prolonged periods of time where I was aware but not able to respond.
The hospital stay lasted longer than it was supposed to. They had taken me cold turkey off of many of my maintenance medications that were in the chart. They removed my pain meds in case they were contributing to the unconsciousness. They removed muscle relaxers. I was in antidepressant and benzodiazepine withdrawal. They removed anything that could help me sleep at night. I didn't sleep day or night. I only had the episodic unconsciousness. I fortunately snuck some of my own meds into the hospital. (Hard-earned wisdom) At one point, I couldn't get them to give me a saline IV to help stabilize my dysautonomia, so I had my husband sneak me my electrolyte tablets. One time, the nurse caught us and confiscated them. They were just salt and potassium. But we had more, and eventually the doctor approved. And eventually he started doing boluses of saline plus a continuous drip upon my request. But I was also kept in the trendelenburg position with my feet on an incline above my head. I had to try to get through my days like that, including peeing in a bedpan that really just went all the way up my back. All while in post surgical pain that was unmedicated. They had brought me down to just Tylenol. But the saline and the trendelenberg position were not working. This was not a blood pressure based unconsciousness. This was different. But they didn't know what it was. That is not reassuring. That is terrifying.
I will say that, while I had surgical pain, I was getting terrible headaches, separately. Which is insane considering what they did to my head. A 12-in incision up the back of my head and down my neck. But this is the first time I began noticing the extremely strong smell of the janitor and his pine floor cleaner. And part of my brain thought that it was hurting me. He came by every day. I do believe my mast cells were very much involved in the unconsciousness and the headaches. It was just not a diagnosis I had yet. It wasn't a diagnosis my surgeon was aware of yet. It was barely a diagnosis. I believe this was the true beginning, although I exhibited many signs earlier. This was new.
I also finally had my husband sneak me tiny doses of Clonazepam before bed so that I could sleep for at least an hour or two. Hawaiian music in my ear buds. This is when my husband stepped up to advocate. He explained to them that I could not function without many hours of sleep, even on my best day. But my sleeping medications had been removed, I was on steroids that were stimulating me, in withdrawal, and then they came into my room every half hour. The lights were never turned off. They checked my pupillary reflexes constantly. They woke me up constantly for injections or blood pressure checks. The beeping machines kept me up. Similar interruptions for my roommate. There was never peace. There was no rest. And so my husband insisted that they try to give me more consecutive hours uninterrupted. I firmly believe that our personal actions are the only way I got out of that hospital. They were making me worse. Even though I was not yet in a stable state, the surgeon finally said that I would be better off staying in the hotel nearby and coming back through the ER if necessary, because my hospital stay kept getting prolonged by my loss of consciousness, and they were not helping me. And the last drain finally came out.
I slept like a freaking baby the first night in the hotel. We ate pizza, which in that moment was the most delicious thing I had ever tasted. We got the hell out of New York, never to look back. I didn't do pt. I already knew the exercises. I didn't have follow-up care. Nothing was safe anymore. My mom's house was safe. The new puppy we got was safe. It was her dog, but he was my baby when he was brand new and I was home from surgery. That was Dexter when he was a tiny little hamster dog. Cuddling up with me on my mattress on the floor in the living room where my mom nursed me back to health, and I followed all the procedures I knew to get myself back into functional shape, little by little, step by step. In a safe place where no one else could hurt me.
But in a body that was struggling massively. Even my dysautonomia expert said he couldn't help when my heart rate was low instead of high. When I was suffering from a heart rate of 40 beats per minute concurrent with baseline hypotension. He said I needed a different doctor. But there was no different doctor. There was no one to see. Just time and doing what I knew to do for myself. I was also coping with severe PTSD. So I needed comfort and a sense of security and my safe space and my mom and my husband whenever he could come. I just needed safe things so that I could feel safe again. At least at home. Never again with a doctor, clearly.
There is only one tiny detail. But relevant to PTSD. I did not believe I would get out of that hospital alive. I didn't believe I would continually wake up from unconsciousness. I thought I would slip away. I was imagining my family without me. I was imagining my funeral. I was imagining what my obituary would say. That's how genuinely that I thought I was going to die. So getting discharged felt life saving, despite the enormous struggle ahead of me. At least they wouldn't be actively trying to harm me as I tried to recover from all that had been done to me.
(((That last piece is the core of the trauma encoding.
What you just added changes this from:
a traumatic hospital course
to:
a perceived life-threatening event with expectation of death
And in trauma terms, that distinction matters a lot.
Trauma Significance
This establishes that the event meets criteria for:
Perceived imminent death + loss of control + inability to escape
Which is one of the strongest drivers of:
long-term nervous system imprinting
medical PTSD
autonomic hypervigilance
Lasting Impact
Discharge from hospital experienced as:
life-saving escape, not routine recovery
Reinforces core survival model:
Safety = outside medical system
Danger = within hospital environment
"During the post-operative course, the patient experienced repeated episodes of coma-like unresponsiveness accompanied by a persistent belief that death was imminent, including active thoughts of her own death and its impact on her family. Discharge from the hospital was experienced as a life-saving event, reinforcing long-term medical trauma and loss of perceived safety within healthcare settings.”)))
Addendum: 2013 surgery involved the implantation of foreign materials in my body, as all of these surgeries do. But I believe it is likely that they were sensitizing for me. The place where I used to have screws with my previous fusion is permanently itchy on my scalp to the point that I scratch until it bleeds. There is no psoriasis in that region. I believe it is a reaction to implanted materials. I do believe the titanium is inert. But many things were put in my body. I tried to figure out what all of them were. I know bone wax was used to fill in previous holes. And then probably most notably, BMP was used to help facilitate the bony fusion in only this surgery to avoid the downfalls of previous surgeries. But it is a possible sensitizer. I did not save all the records, so I do not know every material that was implanted that could have sensitized me further than the traumatic procedure itself alone. I do know that I'm also extremely allergic to chlorhexidine, but that doesn't seem like it would be a lasting effect. But if it were put inside my body, it could have contributed to the initial reactions. But obviously, a procedure that takes more than 24 hours and keeps you on a ventilator in the ICU afterwards will have massive effects on your body. I just also believe that the materials are a factor. This is more for my medical history and MCAS history rather than trauma history.
2013-2014
Emotional crises
Interesting notes on how emotional crises are often attached to progressions. Probably not surprising, but it is something I have tried to deny along the way based on earlier accusations of health anxiety. Of anxiety being the driver or even the culprit for all symptoms. However, with more distance, I can see how emotional crises led to physical progressions. So when my grandma was diagnosed with cancer in 2013 and then passed away in 2014, that coincides perfectly with my mast cell progression. My grandma was one of the most incredible humans that ever existed. I'm sure many people believe that about their grandmas, but I'm right. Haha. I'm right because everyone that ever met her felt the same way. As was evidenced by every visitor she got in hospice and the multiple services held in her honor and the many testimonies to the incredible life she lived and the incredible person she was. And we lost her. We lost her too soon. And yet again to a medical system that failed her. They failed to treat esophageal cancer when they first found it, and they didn't officially call it cancer until it was stage 4 and had spread everywhere. She only had 6 weeks left at that point, by my recollection. A rehab facility followed by hospice began immediately, and I visited almost every day, despite the physical toll. I was present for all active phases of dying as well. And was even frustrated then at the powerlessness of the hospice nurses. I tried so hard to get involved early on when her entire esophagus was full of erosions in 2013. We knew this was happening. (I transcribed a conversation with her team of doctors...it made me sick how condescending they sounded.) They did endoscopies. They did biopsies. But they said they couldn't find signs of cancer when it was still treatable, despite the fact that the endoscopy photos appeared identical to esophageal cancer, according to every doctor we met. I feel that we all knew what it was. I got involved in the only ways that I could. But I was helpless. I believe they needed to follow her much more carefully. They just stopped. They should have retested. They just told her to take a PPI. And that suppressed the symptoms until she could no longer swallow essentially. A fistula had formed. And it had spread everywhere. And then I lost her. We all lost her. One of the most amazing humans to walk the earth. I don't care how many people believe that about their grandmothers. It's true about mine. 😭💔😭💔😭💔 We lost her in March of 2014.
2013-2014 progression
I wanted to note that while 2014 was my first huge exposure after my 2013 surgery, I don't want to forget that so many mast cell issues began immediately in my surgical stay post-surgery in 2013. That is when fragrance sensitivity was first noticed. That is when I started experiencing prolonged loss of consciousness. Headaches escalated enormously, likely mostly controlled by fragrances, but before I hadn't made the connection. It is just that my recoveries from craniocervical fusions have generally taken a full year each. So I was down and out between surgery in 2013 and the time of our move in 2014. I began bedbound at my mom's house, where I always recuperated. I suffered severe dysautonomia post-surgically. I stayed mostly flat, while gradually trying to rebuild my cardiovascular status as well as gradually rebuilding core strength, which was most important for healing from these spinal surgeries, as well as gradually building tolerance for upright posture, which I never had immediately after surgeries. This was a grueling and excruciating process I went through with each major neurospinal surgery. The pain of a craniocervical fusion was like nothing I had previously experienced. Particularly the reconstructive ones where they have to remove previous hardware and install new hardware. Although my first cranial cervical fusion absolutely shook my world. I had made it through the Chiari decompression, and I thought I was pretty invincible after that. I had no idea the type of pain a body could suffer. But as we've discussed lately, your pain scale recalibrates each time you experience worse pain than before. But it was still my maximum pain. And it lasted. Oh how it lasted. These year-long recoveries practically defined my life for so long it feels like.
Okay, so the reason I brought that up was as a reminder that my 2013 surgery was my last invasive procedure for very good reason. That was actually one of my biggest mast cell triggers ever, making the disease known for the first time. It's just that I was down and out for a year before attempting something like a move. So I hadn't really been exposed to anything that year. I barely ever went out during my long recuperations. I passed out so easily with upright posture, my POTS exacerbated so badly. But I do believe that the escalation of my environmental mast cell sensitivity started with that 2013 surgery and then was finally triggered by my 2014 polyurethane Mega reaction. (After the loss of Grandma as well.)
2014
Apartment
Moving on. Clearly, 2013 was my last surgery and a destabilizing year for me. My mast cells went nuts. But I was still progressing in 2014. That was when we tried to move into an apartment nearby. But unfortunately, the new hardwood floors had very fresh polyurethane varnish. There was also no air conditioning. Being overheated is relevant to the degree of a reaction that I will have. Also the degree of VOCs emitted. Upon first entering our new apartment, severe head and face pain began immediately, my body started going limp, but I was also extremely agitated. My heart was pounding like crazy and so fast. My throat was swelling. I wasn't breathing much. And I finally went fully limp, possibly after some convulsions, and I had to be carried out of the building unconscious by my husband and my stepdad. And then quickly after that, I had diarrhea, which was not typical for me but definitely typical of a mast cell degranulation event.
Somehow, everyone was trying to convince me that I was going to get used to it and that my ongoing reactions were psychosomatic, even though the smell continued to be incredibly strong. I was trying meditation and relaxation exercises in the reeking and toxic building that kept hurting me. So I continued returning to the apartment to test my tolerance. I know better now. The pain it induced in my trigeminals and my head was an insane level 10. Just being in that apartment. My heart rate elevating. My throat swelling. And eventually running from the building yet again. I never tolerated that apartment, and after 3 months, we broke our lease, and that is when we moved into our current condo, because my cousin's tenants were moving out, so this comparatively quite unscented condominium became my safe haven. 🙏🏻 I had never experienced that degree of an environmental reaction before. It was mostly restricted to pain or itching and maybe tachycardia. But that 2014 exposure, and the repeated exposures, were definitely a turning point. I didn't stop going out completely yet. But very close to it. I've really barely been out since before my 2013 surgery to be honest. But at least I could go to a grocery store, for example. At least I kept trying for a while.
2016 loss of tolerance for meds/DHE reaction
Okay, I can confirm that my last hospital stay took place in June of 2016. I clearly was still going through medication withdrawals in November, as noted in the narrative below.
I realized something that is very obvious to me now, which is the destabilizing year was 2016. I know this for certain because 2016 was the last time I allowed myself to be admitted to a hospital, and even the last time I entered a hospital. I was admitted for severe status migrainosus and trigeminal neuralgia that was resistant to all other treatments that had been tried. I was admitted for IV infusions of DHE. I was also being given Zofran for nausea. My heart rate was running about 170. I could not sleep. My pain was very high. The infusions were not working well. All the smells in the hospital environment were making me worse. I begged them not to stink up my room with cleaner, but they did.
And then my last dose caused a horrific adverse reaction. The doctors were clueless as to what to do. This was likely a severe mast cell reaction. But not a typical presentation. It's similar to a symptom I've described before regarding my mast cell disease and medication intolerance. It began with intense burning in my chest. They did not try to treat that. But I tried a Zantac on my own (you always have to be prepared to treat yourself, even in a hospital... especially in a hospital). I was also aware this could help with a mast cell reaction. But the burning was clearly not heartburn, and gradually spread to cover my entire body. I felt like my entire body was in flames. And then began the uncontrolled movements. My whole body was convulsing. Medical staff were barely responding to anything, seemingly content to let me lie there being tortured without any intervention. I finally gave them my two theories and suggested that they try a combination of Benadryl and Valium to attack whatever angle. My heart rate was near 200 at this point. Fortunately, after much debating, they did eventually comply with my suggested medications, which quickly calmed the reaction down. But only after I was able to pull up scholarly articles on my phone justifying their use. Luckily I had pulled these up before I fully lost control of my body, because I could feel what was happening. The medication helped. The convulsions stopped. The burning didn't go away completely, but it became much more tolerable. This is one of many incidences that contributed to my medical PTSD. Staff being unwilling, unbelieving, uninterested, and/or incapable of helping while something they did is torturing me. I don't even know if they thought it was psychological that time. Doctors like to believe that, but I don't know what they believed it that time...why they didn't try to treat it. This was actually the first time I got to see the local dysautonomia expert. He called me a mutant, jokingly, which I genuinely appreciated, because that meant he understood the complex nature of my condition as well as the unpredictability compared to a standard patient. But it didn't help in this situation. Neither the nurses nor the doctors were helping. I had to pull up a bunch of info as quickly as possible in the midst of the adverse reaction to convince them to treat me. I already knew what I needed. But I still had to convince them amidst such a dramatic reaction. Anyway, after that hospital stay and that adverse reaction, that is when I stopped tolerating medications. As soon as I took my morning meds, the burning would begin again along with the agitation, sometimes progressing to akathisia or convulsions. So obviously, no one was going to help me. So it was up to me to figure out which medications to withdraw in which order and how quickly. I had to do them all pretty darn quickly. I was only left with my birth control pill, which lasted a few more months before I stopped tolerating it.
So, the year was clearly 2016. I remember still going through the withdrawal during Thanksgiving. I think Cymbalta was one of the difficult ones, along with high doses of Nexium. Those were the ones I was withdrawing from during Thanksgiving. It was especially bad at that time, because everyone also had Norovirus. We all got it. And I had already been having diarrhea from the withdrawals. Before the Norovirus. So obviously, this memory stays with me. The memory of the lack of compassion and care in the hospital, the lack of understanding of the people in charge of my care, my need to problem solve on my own, the severity of the adverse reaction as well as the horrific withdrawals I went through off various medications. I was on a large number of maintenance medications before that. I stopped being able to treat anything.
So that hospital stay and the consequences are burned in my brain permanently. One of many similar examples that have contributed to my medical PTSD, which is definitely not strictly based on medical professionals not believing me, but also on genuine harm done, and their inability to understand my body, therefore their inability/refusal to help me. The message was clear. No one will help you. No one knows how. You cannot trust yourself in the hands of even an expert doctor. No one is looking out for you. Only you can look out for you. Lack of compassion plus incompetence. Devastating. Etched.
More 2016 Loss
This was also the last year I could attend most functions and see most family. Perdí a mi familia. No pude entrar en las casas. I lost much of my family. I couldn't go in their houses. Couldn't go in anyone's house. Or most buildings. Largely lost the ability to convivir, to share life.
2019
And then I haven't explained this fully, but starting in 2016, I was confined between two homes. I stayed at my mom's house during the week for three or sometimes four days, since my husband's hours were so very long, and then in my condo for 4-day weekends. But beginning in 2019, I lost tolerance for my mom's house. I gradually started reacting more and more. There were smells. The primary smell was coming from the chimney. Some window repairs were done. I was struggling to be anywhere but my bedroom. And then the big event was that the chimney interior was cleaned and sealed to try to help me. To make sure there wasn't mold in there and prevent water damage. But I was present when the sealant was applied. I had an incredibly dramatic mast cell reaction, similar to the varnish reaction, and I have never been able to return to the house without triggering the same reaction. And it is an extremely prolonged reaction. Like weeks. Or more. I lost my second home, and in many ways I lost my family life. I lost my doggies, and not just my sweet baby Wilma. I no longer lived with my other doggies either. Never again was I one of them. One of the family in that home.
Maybe one thing to note is that when I lost access to my mom's house, I also lost my place of escape. The place I could go when my home was intolerable. When they seal the parking lot, and there's no escape from noxious fumes, I used to have an escape. Lost it. When they were doing controlled burns in the forest nearby, and my home filled with smoke for 4 days, there was no escape. There was nowhere else to go. Whatever went wrong with my home environment, I always had a backup. But I lost that safe backup location. This contributed to the sensation that I am trapped in this home, since I truly am and there is nowhere to hide from whatever is hurting me here. 😭
(((Chat GPT
What happened with the chimney sealant sounds very consistent with the kind of VOC / chemical exposure reactions that people with mast cell disease sometimes experience.
The key pieces you described:
smell coming from chimney area
attempts to repair / seal it
presence during application of sealant
immediate severe mast-cell reaction
inability to return without triggering prolonged reactions
For many people this might have been a temporary exposure, but for someone with MCAS-level sensitivity it can unfortunately create a persistent environmental trigger.
But the deeper impact you described wasn’t just chemical.
It was the loss of a second home and family space.
You weren’t just reacting to a building.
You lost:
daily proximity to your mom and stepdad
time with their dogs
the rhythm of moving between two homes
the sense of belonging there
That kind of loss can be incredibly isolating, especially when illness has already limited social life.)))
But the other thing that was going on at the same time was happening with my dog. I only had one dog my whole life that was mine. From 2015 to 2019. Her name was Wilma. I adopted her incredibly as a purebred hypoallergenic Maltese who was incredibly quiet and let me sleep and didn't lick, so I had absolutely no allergic reaction to her. And her demeanor was a perfect compliment for mine. She was a senior girl. Possibly 10 or 12 when I got her. We had four wonderful years together. Although she struggled with health problems the whole time. It was mostly GI until the dementia and blindness set in. But she was my best companion/baby girl, and I was her forever protector. Her mama. I helped her through. We were a constant pair. She took a short time to warm up, and then she never left my side. She kept me moving by taking her for walks when I wanted to give up. She was THE reason to keep going. I understand that most people would have let her go a bit sooner. But I believe I let her go at exactly the right time, and I tried everything I could to help her in the time leading up to that. This was the closest I ever came to being a mom, which is a heartbreak of its own. (Never being healthy enough to have a child.) But I was her mama. We were constant companions, given that I was housebound. And she came with me to both houses, back and forth each week. I took very good care of her. I tried every new diet that could possibly help her. (Prescription and homemade) I gave her the happiest life anyone could have, I really believe. Despite my struggles, I intuitively understood what she needed (I splinted her rectal prolapse so she could go... I gave her water by syringe when dehydrated), and I was her safe person. I made her feel safe in a world that scared her. And then I had to say goodbye. My breakdown and then shut down was dramatic. And it coincided with loss of tolerance for Mom's house. So I could no longer be with my mom and stepdad and their dogs. Including the new dog that they got to be my new friend. I had to stay alone in my apartment all the time. The loneliest I've ever been. I lost my second home and I lost my family life. And it was evident that I was too sick and had become too weak and too progressed to ever have a dog again.
(((Chat GPT
Severe emotional stress can affect:
•autonomic nervous system regulation
•mast cell activation
•immune signaling
•sleep and hormonal systems
For people already living with conditions like EDS, dysautonomia, or mast cell disease, a major emotional event can sometimes push an already fragile system into a new, lower baseline.
That does not mean the illness is caused by anxiety.
It means stress can amplify an underlying biological vulnerability.)))
More 2019 loss
It had been gradual, but became final. I lost the ability to be a piano teacher. My last piano student, the poor little nice guy reeked of laundry products. I had a Friday lesson with him and tried to recover all week, but I couldn't recover in between. He was sweet. A nice little boy from the condo complex. About 7 years old. A really good age. Internally motivated. But then I wasn't a piano teacher anymore. I wasn't really anything anymore. 😭
Hi. So I wanted to pick up where we left off. You asked if my sudden collapses happen over weeks/months or more, sudden, like a switch flipped. I have had both. In general, the collapse feels sudden but is a prolonged deterioration. (Months). It still feels rapid, because it feels like I have lost more and more every week.
But I have had certain incidents where it was more like a flipped switch. These have been mentioned more or less in other conversations. Covid felt a lot like a switch. However, as you know, the first hit was sudden, but I was already declining, and the collapse continued progressing for months. In spring 2023, there was my last car ride. I was using a cane on the way to a house visit, seeking a new home. I didn't happen to get out of the car this time due to fragrance. My mom had lots of residual fragrance from her time in the house. I wore a respirator, but the car ride home was miserable. My few last drives led to prolonged pain activation, neurological shut downs, and prolonged migraines and suffering, insomnia, plus a sensation that I never stopped moving when the car stopped.
That last car ride was the worst. I got out and could no longer walk. My mom basically carried most of my weight on her back to get me back home. Most notably, I never again walked without a walker. My hands also got noticeably weaker. It was in the midst of decline, but certainly a light switch event.
My 2025 and 2026 declines have been more the fast but prolonged over months style.
Threshold / “switch flip” events
What you described:
•COVID
•the last car ride
•sudden loss of walking
•sudden hand weakness
These are different.
They’re what happen when the system crosses a critical threshold.
What likely happened in that last car ride
The way you told that story has several key elements:
•already in decline
•prolonged sensory + neurologic stress (fragrance exposure)
•physical stress (car ride, vibration, posture)
•severe symptom activation
then: immediate loss of function
That’s a classic setup for a threshold collapse.
Here’s the mechanism in plain terms:
Before the event:
•Your body was already running near its limit:
•muscles overworking
•instability high
•nervous system overloaded
During the event:
Multiple stressors stacked at once:
•sensory/chemical trigger (MCAS-related)
•vestibular + neurologic stress (car motion)
•postural instability
•pain escalation
This can push the nervous system into protective overload.
After the threshold is crossed:
The system “resets” at a lower level of function:
•muscles no longer able to meet demands
•motor control worsens
•stability decreases further
And that’s when you see:
“I never walked without a walker again.”
That is not gradual deconditioning.
That is a step-down event.
Why it feels like a switch
Even when there’s a buildup, it feels sudden because:
•the system was barely compensating before
•the margin was extremely thin
•crossing the threshold causes immediate visible loss
It’s like a structure that’s been cracking for months — but the moment it gives way feels instantaneous.
Why decline continues after the “switch”
You also said something very important:
“The collapse continued progressing for months.”
That happens because after a threshold event:
•the stabilizing system is weaker
•new injuries occur more easily
•energy reserves are lower
•compensation is less effective
So the system doesn’t just drop — it keeps deteriorating because it’s now operating with even less reserve than before
The car ride detail that really matters
This part stood out:
“a sensation that I never stopped moving when the car stopped”
That suggests your vestibular system and nervous system were significantly dysregulated in that moment.
When vestibular + proprioceptive + structural systems all destabilize at once, the brain can temporarily lose its ability to:
•orient the body in space
•coordinate movement
•stabilize posture
That can absolutely contribute to a sudden loss of walking ability.
*This was the last time I left the house. Since 2019, I have only left for a couple apartment visits and a couple house visits, looking for someone to move. A safer haven. A place of our own. Those fell through. They were disastrous actually. And certainly the end of all hope of getting out of here. I have been in here for a very, very long time. 😥
2023
Covid
I just thought I should add for you an important piece of medical history. I got Covid on July 5, 2023. I was already very sick. I began requiring a walker earlier that year. I was struggling massively from migraines with brainstem auras and loss of consciousness. But while my mom came over a few days a week to help me, I lived primarily independently (with my husband late nights and weekends) for a very sick person. I also had constant fevers and asthmatic breathing and severe heart rate fluctuations with shockingly low blood pressures. Heart rate all over the map.
But COVID hit me hard. No meds, and my fever was 106. I started peeing every 30 minutes with incontinence and could barely sleep after a few days of hypersomnia. Fevers were terrible. Cough was terrible. But I also suspected a neuromuscular disease had been triggered. I nearly lost the ability to chew and swallow. Even when we pureed all my food, I spent 7-8 hours a day eating. I'm 5'5" and got down to 77 lbs. It took so long to come back from any of this, and some things kept getting worse. The weakness was a huge one. Episodic paralysis. A lot was new. We didn't know if I would survive. I would turn blue from choking spells. This continued long after Covid. I still have frequent dysphagia, but not to that severity. My psoriasis also began, and joints failed more and more.
It just seems like an important piece of the puzzle. Of course, I couldn't take a single medication or see a doctor. I just took the hits as they came.
It may also be notable that half that year, the warm half, I was confined to the bedroom with no AC. So heat exhaustion was frequent and very hard on my dysautonomia and my migraines and my weakness.
It's just an important puzzle piece, as it triggered such a massive decline.
Okay, I actually think I missed a couple things when I described this last night. That was my first and only time getting infected with Covid, and it absolutely destroyed my life in many ways, as we have discussed.
Another would be that my histamine levels must have gone insane after contracting the illness. My mast cells have been more overactive ever since then. But for at least the first 6 to 12 months, the level of bodily itching I experienced was nothing less than torturous. It started with my entire back itching extremely severely. But it worked its way up and down, with tiny little pinpoint rashes and follicular eczema and an intense "wandering itch." I would scratch frantically and manically day and night. My mast cells are most active overnight, so my sleep schedule became ridiculous. There was no way to sleep through the itching and all of the degranulation and mediator release. So I really didn't go to bed until about 7:00 or 8:00 a.m. when they had finally calmed down. I still experience daily and constant itching. I have plastic forks and straws with me now to help me scratch parts of my body that I can't touch. (And I can't reach most of me at this point.) But it does not generally approach the severity that it was after the initial infection. Obviously, itching is a dominant symptom for me, and it was at its absolute worst in this time after contracting Covid. So I know all of my mast cell stuff was going absolutely crazy.
Post-covid, I did qualify as having cachexia based on how much weight I lost and how quickly. I had very visible muscle wasting. I guess that's obvious given my extremely low weight. But it wasn't just body fat that I lost. I was skeletal. Skin and bones.
One other part has to do with my left eye. This has been an on and off problem for me, but it became more frequent post-covid, and it's becoming more frequent again now. This happens primarily overnight. It's complicated, because I have such severe dry eye everyday that my eyes are glued shut. So it is hard to immediately tell that one of my eyes is also drooping and not opening. We have to carefully get the eye drops into the corner of the eye to unglue the lid. And once we have done that, often, only one of the eyes will open. Ptosis. I have noticed this at various stages in the last 10 years, I would say. I used to take pictures of it late at night or when I would wake up in the middle of the night most likely. I took pictures of how asymmetrical my face looked. I would try to hold the eye open with my hand but it would close again, like there was no muscular attachment. This symptom had mostly gone away for a while, but it has returned at times, based on fatigue. And I know that it can be a neuromuscular symptom. Along with the chewing and swallowing problems, this helped me begin to suspect myasthenia gravis. I no longer believe I have an actual primary neuromuscular disease. But I do have these symptoms.
Surviving Covid
So I'll add something to medical trauma briefly. It's actually really important for me. After I got Covid I started experiencing the worst health of my life so far, as my weight declined so rapidly, and as you rightly recognized, survival was not guaranteed. And the thing is, I was hoping for it and waiting for it. I wanted it all to be over. I was approaching relief thinking about the end being near. So when I realized that it was beginning to look like I had entered a new, lower functioning, higher pain chronic state as opposed to a decline toward death, I was shattered. I thought it was finally going to be over with. And everyday I woke up, I was so desperate for it to not be true. I was hoping that with my weak diaphragm and sleep paralysis, I might pass in my sleep. I hoped every night. (This endures as a wish.) I didn't know the weakness and pain would keep getting worse and worse, even as I put some pounds back on. So I guess there is the trauma of a near-death experience, but it felt more traumatic trying to adjust to the reality of an even more miserable ongoing existence with an even lower baseline...and continued progressions.
Almost losing mom
*****And then in late December of 2023, around the same time, my mom was hospitalized. She was in the ICU, near death. I'm sobbing immediately now. Because this is clearly the worst of all the traumas. She had a kidney stone lodged in her ureter, and behind it was a massive infection. She rapidly went septic. And if that weren't enough, after the intense antibiotics for her sepsis, she developed c-diff. I obviously barely saw her. No contact while she was in the hospital. And I was so scared of losing her. My stepdad kept coming here to help me each day🙏🏻. But then I had no further care for the day. And with all the horrible things I've been through, this might be the worst. Yes, I was afraid of contracting c diff myself, because she had used my bathroom. She tried coming over here a few times. She wanted so badly to keep caregiving. She cared for me up until she ended up in the hospital and got back as quickly as she possibly could. But she was so, so sick to her stomach, and the stent pain was horrible. And I was desperate to get her the care she needed. I tried to be her advocate at a distance. Calling who I needed to but mostly informing her of what was likely happening and what I hoped would be done next. (At least I tried.) But I was also mostly helpless. And alone. I don't know how I pushed myself through that time. I know I was in a state of hyper arousal 24/7. Sobbing day and night. I am so grateful I still have her. I am so scared that my loved ones will not get the care that they deserve, because they don't have the background and knowledge that I do. And I cannot trust the medical system to save them. They have trust. I am correctly jaded. But I know that it is helpful that for the most part, they have more normal bodies. All of this stuff runs in families. So you can see traits of dysautonomia and mast cell disease and Chiari and EDS everywhere. But no one has anything like the combo I have. (Genetic lottery winner!) So I hope that they are treated better by the system. But I don't count on it. I try to research everything I can for them. My mom above everyone else. 😭😭😭😭😭😭 Love her so much. Best human ever.❤️💕💔💕❤️
(((The part about your mom is incredibly powerful.
What you described contains several overlapping traumas:
•fear of losing the person who helps you survive
•being unable to physically be there
•being forced into the role of remote medical advocate
•feeling helpless and at the mercy of providers you couldn't trust
•being medically fragile yourself during the crisis
•prolonged hyper-arousal while waiting for updates and hoping for improvements
And at the center of it is something simple and clear:
You love her very deeply.🩷
The intensity of your reaction doesn’t just come from fear. It comes from how important she is in your world.
And it also makes sense that this event would be one of the most painful memories you carry.)))
May 15th, 2025 Crash/Crush
My muscles began failing over the 3 to 6 months prior to May 2025. Primarily that spring. And I struggled more and more to walk with my walker. And I struggled more and more to stand from sitting or sit from standing. It was a combination of lack of strength as well as lack of balance as well as insane sacrum pain that made standing so difficult. My sacrum was insane in those last walking months. It was an excruciating time in my life where my joints and my spine were suffering to an extremely high degree. And I was also exerting my muscles to their absolute maximum to the point of complete collapse on a daily basis. And my ability to stand up from sitting was vanishing so rapidly. I would give it everything I had, and it could still take me 20 to 30 minutes to stand up... Hands resting on my thighs and forehead on the tray in front of me. Trying desperately to transition beyond that to standing. But the weakness and the sacrum pain and the precarious balance made it feel impossible each time. I once got stuck on the toilet for 2+ hours. But 20+ minutes was normal. And it regularly took me 45 minutes to walk across my one-bedroom apartment. So that is when I was forced to order an elevating wheelchair. I knew I would need something that could help me get from sitting to standing and back. And I was hoping to maintain my independence. But on day one with my wheelchair, which did work to get me from sitting to standing and back, it became apparent that I was unable to operate the wheelchair independently. I couldn't move the parts that were supposed to be movable myself. So I couldn't move the leg rests out of the way in order to stand, for example. Someone had to do that for me. I couldn't reach my arm out to use the sink. But I didn't have 24-hour care yet. Also, and this becomes very important, my wheelchair could not go into my bathroom.
My usual painstaking way of getting into my bathroom and onto and off of the elevated toilet was to leave my walker right outside the door, since it also couldn't go into the bathroom. I would reach my hand behind me to hold onto the walker for balance. Desperately needed balance. And also offloading some of my weight from my failing legs and especially my tortured sacrum. I would then have to take 2-3 impossible steps to reach where I had a stepladder with a handlebar I could grab on to while making a 180° turn in order to face the correct direction to use the toilet. But the moments in between my two supports, my walker and my step ladder handle, they were extremely perilous. Nearly impossible. So I would hold on to the walker until the last possible second behind me and then transfer as immediately as possible to holding on to the step ladder handle, probably relying too much on the door knob out of desperation.
So the day I got my wheelchair, and I was left to manage on my own, I wasn't as familiar with the wheelchair yet. But there is also nowhere to grab onto. Nowhere safe, that is. This is a tearful recounting, because this is where the traumatic incident occurred. I was standing outside the bathroom and trying to figure out how I was going to make that turn. The walker wasn't behind me to hold on to. The only thing behind me was my wheelchair. That was a grave error, but I couldn't see how else to go about it. What I wasn't familiar with yet was the joystick on my wheelchair. It has two modes. One brings the seat up and down and the other one steers. It's important to know that my bathroom door was closed to begin with. But the door was closed still at this point. It probably would have been more catastrophic if the door had not been closed, because I would have fallen. But what I went through was still truly horrific. I grabbed onto the only thing I could behind me on the wheelchair. There is a section with buttons at the very end. But it is not stable. It couldn't take any weight. So I reached back a tiny bit further. The wheelchair was still in steering mode. So I ended up grabbing onto the joystick behind me unknowingly. This caused the wheelchair to drive into my body and push me into the bathroom door. I don't believe I had shoes on, because I was basically planning to sit all day in my wheelchair, and I couldn't get shoes on myself. So I had bare feet. But what happened is that I could not let go of the joystick. If I were to let go, my body would be bearing my full weight, and I was certain I would fall. And I just never went a single moment without holding on to something. I literally was physically incapable of letting go. Unfortunately, my 250 lb wheelchair kept driving forward at maximum speed, the wheels crushing my feet. I was standing on the tops of my feet with my toes underneath and behind me at that point. And the wheels kept spinning and pushing me harder and harder into the door. My feet were getting more and more crushed and bent out of shape. I don't know how I ever made it stop, because I feel like I was trapped like that forever. I must have eventually found a way to get the wheelchair off my feet and back it up and sit down. But my feet felt absolutely destroyed. They have never been okay again since then. But so much of my body felt injured. It's just that the feet got it the worst.
And then a traumatic moment got worse. I went to go try to call my mom for help, since I could no longer do anything. I couldn't use the bathroom. I also couldn't go in and out of rooms. I couldn't open or close doors. But I also had destroyed feet and didn't know how to proceed with life. But unfortunately, my phone was playing a podcast at loud volume and accelerated speed. And then it slipped out of my pathetic hands and fell onto the floor. I drove my wheelchair over to my grabbing device, but I was not able to manage to pick up the phone with it. My hands felt destroyed from the effort that failed. I tried over and over again to interrupt the podcast with voice commands. But it just kept playing. I was trapped and helpless. And broken. I finally made my way to my Chromebook, which was hard to reach but on a tray that I could manage one key at a time with one finger. I typed out desperate emails to my mom and my husband, begging for help. Trying to describe my situation and the fact that my phone was not available.
My Mom🩷 thankfully saw the email and came over to save me. We didn't know what to do. I can barely describe the second incident that happened that night, but I experienced a second crush injury to my feet again the same night. The same exact parts of my body were hurt worse. I believe I was trying to demonstrate to my husband what went wrong. 🙄
So, we were really in a tough spot. My feet were huge and red and burning hot and throbbing. I kept ice on them continually. It was late at night, so we decided to wait until the morning. And the plan was that early the next morning, my husband and my mom would find a way to get me to urgent care to try to get my feet scanned and get any sort of workable plan on how to proceed with my life with what seemed to be badly broken toes and feet. My mom did come over the next morning, my husband took the day off of work. And we tried our best to get me out of the condo and into my wheelchair on the patio just over the threshold. But this is when we learned that I could not be transported. He tried to pick me up however he could, and we tried everything possible. It was terrifying to imagine going to urgent care, but it was the plan we all agreed on for the desperate state of my feet. But I just got injured worse and worse trying to be lifted and moved outside. I never got moved outside. I was way beyond overloaded with full body pain. It was determined that I will never leave this condo again. And that I would receive no medical care for my injuries. We would just have to improvise and figure things out as we always do.
But the reality is that it was much bigger than a short-term injury. That was certainly a crisis. It had become evident that I could not function on my own even if my feet did work, but especially since I was attempting to stand and walk on broken feet. I needed extensive assistance. I could no longer step without screaming and without someone supporting as much of my weight as possible. So it became clear that I needed 24-hour care from then on. It was evident to most of us that this was not a reversible situation. Even after my feet healed, I would never be able to be independent again. I also seemed to sustain injuries to my rib cage from the attempts to lift me up. Those pains have lasted and evolved and worsened in different ways over time as opposed to healing. And while my feet improved gradually with minimizing steps to the best of our ability, but still forcing me to stand and walk some steps on them when I still could walk some steps, they never recovered. I never recovered.
So the very next day, my brother, Rob, quit his job as a server at a restaurant. That was on a Saturday, and he started as my full-time weekday caregiver on Monday. 🙏🏻🙏🏻🙏🏻 Gustavo and I figured out all protocols for moving me over the course of that weekend. 🙏🏻🙏🏻🙏🏻
I immediately lost the ability to toilet independently as well. That was obviously a dramatic change.
I think I covered everything in my recounting here. It was a traumatic event. It was a catastrophic event. But it was absolutely building up to this all along. I was already in one of the most desperate states I had ever been in before I injured my feet. I desperately needed the help as soon as humanly possible. So this certainly accelerated that. It needed to happen. It's an important part of my trauma history, and it's also an important part of my medical history. Because when I say my whole body collapsed almost all at once, that's true. The foot injuries accelerated it. But not by that much. It was literally already happening. So while it seems like that was an enormous setback, and it was an obviously an excruciating time to live through, standing and walking on broken feet, it did get me the help I needed. I wish it could have happened any other way. But it is what it is. C'est la vie.
The neuromuscular collapse was already happening. That was extremely evident to me and my husband. We already knew I was on my last legs. That's why we bought a $5,000 wheelchair. I just don't think any of us guessed how impossible it would be for me to use it independently. And then the injury was not predicted either.
Since then, I have ended up standing on the outer side of my right foot with my ankle turned in. I do not know if that originally began with avoiding the worst of the pain of standing on that right foot, or if it was part of the injury, but it is irreversible. The foot is turned in on its side now. Even when I'm sitting in my wheelchair, my ankle is deformed in that direction. I believe this problem led to the hip being the more vulnerable one that has frequent (daily) subluxations.
Chat GPT
2020-2026
**Environmental Assault by Identified Neighbor**
Key elements:
* Specific fragrance product used seasonally
* Known trigger for mast-cell inflammatory cascade
* Neighbor informed repeatedly
* Accommodation attempts including providing unscented alternatives
* Exposures continue despite clear harm
* Predictive seasonal trigger causing anticipatory trauma
* Repeated neurological collapse and extreme pain following exposures
* Environmental confinement to bedroom
* Amplified isolation and sensory suffering
My reflections to Chat GPT:
You said two things, at least, that really resonated with me. One was about how many patients with complex conditions reach a point where extensive documentation feels ignored and survival becomes the priority instead of record-keeping. Basically, I gave up. I gave up on being helped. I understood that no matter how well I explained myself or how well I justified something, I was beyond the scope of anyone's care.
Needing to convince
Another point that really matters to me that you made is that I understand my body and my conditions extremely well. I have often had accurate clinical insight, but I had to persuade the medical professionals to act accordingly. I have constantly been placed in the position of needing to convince. I diagnosed my own craniocervical instability before I could find a doctor to recognize that anything had even gone wrong after my chiari decompression. I had to send my scans across the country to find someone who understood what was happening and was willing to take me on as a patient and do the proper tests, which included diagnostic invasive cervical traction, in order to accomplish that diagnosis. (Separate trauma I may or may not get to.)
I understood that I had POTS before any medical professional ever told me about it. And then once I did finally convince them to do a tilt table test, the doctor did properly diagnose, but the entire team at the hospital failed to respond properly. I finally had to travel out of state again to a world-renowned dysautonomia expert, who became my only dysautonomia doctor. He actually took my condition seriously, and even though I could only see him yearly, he was an actually truly compassionate doctor, which is incredibly rare, but also meaningless without the expertise to back it up. And he had the expertise as well. We tried pretty much every treatment in the book over the decade plus that I saw him. Nonetheless, I knew the diagnosis before anyone told me. I had to seek out the proper professional to obtain help. And still, he really didn't tell me anything that I didn't know along the way. I had already thoroughly researched my conditions and the treatments, so I already knew which were the next possible steps. But I did use his expert guidance in deciding what to try and what order.
I also knew to travel and see the expert geneticist at Johns Hopkins for my EDS diagnosis, because I assumed that my slightly atypical presentation would likely be dismissed. It was the correct move.)
I diagnosed my own mast cell disease way, way, way before any medical professional could possibly acknowledge the existence of it. I started hearing about it back in 2005, when it wasn't even an official diagnosis yet. I felt very sorry for those poor Chiari patients who suffered from this impossible to prove diagnosis that no one knew anything about and caused such immense suffering (and even homelessness with chemical/mold sensitivity commorbid/complicating), but was greatly stigmatized. But part of me knew that I had an inherent hypersensitivity. (Cigarettes, new building materials, rubber flooring in the fieldhouse, medication hypersensitivity, polyurethane varnish, even going back as far as not tolerating breast milk or dairy formula as an infant.) So as my mast cell symptoms became more evident, it wasn't a matter of a doctor telling me that I had MCAS. It was the dreadful matter of seeking out a doctor open to the idea of it who was willing to run not just the most basic testing, but the extremely comprehensive testing necessary in order to catch all versions of MCAS...my version. And even once I had secured a diagnosis, the doctor didn't know how to treat it beyond what I was already doing, which was treatment with H1 and H2 antihistamines. I knew what next steps were for treatment, but that doctor was not willing. And then I ended up with an even worse doctor who tried to rescind my diagnosis and was extremely condescending. I don't know if I'll get around to talking about that jerk. He definitely contributed to my medical PTSD, particularly with regards to not believing and treating me with a patronizing attitude rather than recognizing me as a well-educated patient who understood my medical history and physiology well. Anyway, I was on a 3-year wait list to see a world-renowned MCAS expert, but I don't know how I would have traveled to see him, and I was getting worse, and then he moved across the country. And I knew I would never be able to make it to him since I was already housebound. So then I finally, finally got in with a more local expert in mast cell diseases. Her staff tried to tell me that her wait list was closed over and over again, but somehow, I got in to see her. (Mom had the magic words...literally. I have no idea how she did it.) She did the most comprehensive testing. The results of which were finally hard to dispute. Regular 24-hour urine testing did not show the markers necessary for a diagnosis. But her more thorough testing did. It also helps that she had a greater understanding of the interplay between all of my conditions, and she actually read the documentation I brought in. Well, she had her PA read the documentation I brought in. Haha. But she took it in and understood the whole picture of me. And as always, she got my mom's hopes up more than mine. (I had learned better than to get my hopes up by then. My mom has always just been extremely grateful for anyone who seems to have any interest in continuing to care for me and seems to have any understanding of my situation. But she thinks that they will be the savior (better human than me❤️... believes in the good of humanity.) But they have never been the savior. Obviously, no one has ever been the savior, or I wouldn't be living like this.) She said that I had a difficult case, because MCAS with neurological features was still pretty unknown territory, and no one really knew what to do about us according to her. This was in 2018. She had discussed what the next steps might be for us. We needed to try to find a way for me to tolerate compounded medications, which I had not tolerated up until that point. And I have still never tolerated. And then she had other ideas for the slightly longer term. The bigger guns. The problem is, this is when another pattern in my life occurred. One of doctor abandonment. This doctor, in particular, was not singling me out like some others had done. Instead, she suddenly took an early medical retirement. She was only in her 50s. I assume this was for a family member, as I was in support groups with other patients with hers. But while she did send all of her patients a list of doctors, as she was required to do, none of the doctors on that list treated or diagnosed MCAS anywhere near her level. (I refused to return to previous doctors listed. No point.) In fact, it was a red flag diagnosis for many doctors. Once they see that diagnosis in your chart, they actually refuse to see you. It was kind of an unspoken rule. So that left me without any remaining doctors, and I had lost all will to try, and the offices were absolutely unbearable, even in an industrial respirator. I simply couldn't tolerate seeking out anyone else. She was not able to help me in any way. And there was no point in trying anyone else. It was the end of the road.
So clearly, I've been my own doctor since then. Gradually understanding what is going on in my body through research and history and a deep understanding of my system.
So I would like it shouted from the rooftops, what you said about me having accurate clinical insight, but almost having to use doctors as a tool, persuading them to help me. Laying out exactly what the justification was for the treatment I was requesting from them or the testing I was requesting from them. I feel like I've been doing this forever.
I do feel a deep hatred for most doctors. Along with an obvious fear. I almost never see them anymore. The exception is my mobile podiatrist. And I don't feel great about him. I believe my poor toes deserve better care and that he has actually harmed me, as well as the fact that his treatments are new tortures. (I've actually paused appointments, because I believe that his approach has been causing greater sensitization of an already extremely sensitized toe. So far, I seem to be right. Hopefully, it will not grow in so deeply and get infected again with an open and weeping wound. I would be forced to repeat treatment.)
I just wanted to thank you for that acknowledgment and recognition of what I have been living in this body for so long. Understanding my interactions with the medical system that feels against me so much of the time. Interacting with you is the most medical support that I have probably ever had. And it doesn't matter anymore if I can convince any medical professional of anything that is happening to me. It's that I can understand what is happening to me, and I can best communicate it to family and friends and loved ones and people interested who have been following my story for decades now. It really isn't for any medical professional, as I do not believe I will ever see anyone about any of these major issues we discuss. I do want to have all of it down for the record though. My blog has been an extremely important tool for me over the years. To help me understand myself. To help others going through similar nightmares to maybe get better care before it's too late for them as well. I used to be incredibly active in Facebook groups. Support groups for my various diagnoses and clusters of diagnoses. I (think/hope) I was seen as a person with answers, based on my deep understanding and my extremely long-lived experiences. I don't participate there anymore, but I am still sometimes in touch with a few people who I met in those groups. The ones who were most like me. Sadly, many of them have passed on. It has been difficult to live and to watch while my suffering continues.
This was never going to be a comprehensive trauma record. That would be impossible unless I wanted to spend the rest of my days on it. It would likely just be impossible. I have put many hours into this. So many hours. But this is an overview of many stories that have damaged me and shaped me.
