Autonomic Dysfunction

I hate somatic symptoms. They override every rational part of my brain and take over. It leads to panic attacks and dysregulation. I dissociate more and cannot focus. Even my coping skills (which are diverse and usually very helpful) are too hard for me to even access. My brain cannot stop focusing on the fear. I feel like the only lighthouse operator (what are they called), hypervigilance kicking in because a storm is approaching and I am the only one and must be ready. Complex ptsd- you know?

Lately I have been extremely anxious. We all know why. I have been posting about it. And as things are progressing, it is leading to more somatic symptoms.

It is triggering emotional flashbacks that leave me paralyzed- unable to think about anything other than making sure I am safe. It reminds me of the somatic symptoms I got when I was calling agencies every morning begging for the resource of housing because my friends were kicking me out, again, because they didn’t think it would take this long for me to get housing. The disability system is really hard to survive. And the focus of health care now in its target- how could it not trigger these flashbacks.

GoFest, one of my favorite annual events I have participated in during almost every year despite my situations (which we have seen have been pretty dire at times), was hard for me. I also have been having an increasingly hard time taking care of myself, sleeping, brushing my teeth, leaving, thinking, showering. I am terrified and activated. My medication isn’t working. I’m throwing up purely from anxiety. I literally just throw up now. I am coping through all of this. My therapists have nothing but validating things to say. There are no changes that can be made. I am just existing. I’m not sad. I just am anxious.

And angry. Thank you to my friend who reminded me of this recently. I am angry that my life has become a system of begging for resources when I could be doing so much more! I have a great education and was a great school psychologist- a profession that consistently has openings because the demand is so great. However, because of a combination of trauma and chronic illness, I am disabled and have to spend my time and energy on fighting for resources that are now being fought over in politics. This isn’t about politics. This is about basic human needs.

I have been trying to get well, with so many inhumane barriers, while sick, just so I can return to work and have a normal life. I don’t want money or status or power. I just want a normal life. I want to live with dignity and safety. (People who have been read posts a couple of years ago probably know these barriers)

My boyfriend told me my words and thoughts matter. That I’m a good advocate. He tells me that for every person who does respond to my post, there are probably five others who do read it. Which is why I took the time to post today.

I am so scared today. Thank goodness I have both a therapy and a psychiatrist appointment with my wonderful providers.

#MentalHealth #CheckInWithMe #ADHD #ChronicIllness #ComplexPosttraumaticStressDisorder #Disability #Anxiety #Agoraphobia #PanicDisorder #GeneralizedAnxietyDisorder #AutonomicDysfunction #Migraine #PosturalOrthostaticTachycardiaSyndrome #POTS #ChronicVestibularMigraine

This is a vent- I already have a game plan of my next steps.

Case management has been one of the biggest struggles since I have become disabled.

I’m not going to get into all of the reasons I need a case manager but most of it has to do with getting through the disability system without losing that life saving support (because it’s really hard to keep up with the paperwork if you have been homeless) and to get to appointments and advocate for myself because of medical trauma and panic attacks that make it so I don’t get the treatments and tests I need when I need them- no matter how much I try.

I have had to open cases with the local mental health oversight agencies because of two agencies messing with my case management services. Both times, the agencies admitted they were wrong, but the harm was already done.

I have been without a case manager for months after I was discharged without warning by the most recent agency when I told them I wouldn’t see their psychiatrist because I already had one and they agreed to it but went back on it a month later without telling me.

I asked for a peer support person because someone told me that may be more appropriate, but I cannot because I don’t have a SUD.

I went to a different agency last month and the intake was so bad I cried through the whole thing. They didn’t want to know about anything with my physical health or conditions or the medications I take for them. Then they told me I was too high functioning and may not be eligible for case management. I said “I have had case management from other agencies for almost 8 years, I went through this entire intake and you had me share my entire trauma history, i am telling you exactly how my disability impacts my ability to perform these necessary responsibilities for my health, and just because you can’t see my disabilities doesn’t mean they are not there. If they were on the outside of my body then i guarantee I would qualify.” I didn’t think I would hear back from them.

Well I did. I had an appointment today and I spent the week in high anxiety state because I don’t want to go through the justification with someone else again. I “look” fine, i know. So after three separate conversations with my therapists, I made it into that office for a second time, trying to take deep breaths. I made it on time and I found out that they scheduled it at the wrong location. I told them twice I needed it at a certain location. I had my intake there. But they assigned me a case manager at a different location and didn’t tell me when they called me. So I went to the place where I went the first place, the place I requested originally. And the person wasn’t there.

I do not think providers realize how hard it is for people with disabilities to get to these things. I’m tired of explaining and justifying it all. I’m also worried about the upcoming vote on the budget bill that will cut funding for health insurance and make it more cumbersome to complete the already confusing necessary paperwork. (This is not a post inviting others to argue about whether or not this will happen- I am stating a realistic fear that I have checked with my therapists, and is increasing my anxiety about this situation because it feels urgent I get as much done as soon as possible since this is being proposed in the US).

Anyway, thanks for listening.

#MentalHealth #Disability #ChronicDailyHeadache #Anxiety #Agoraphobia #PanicDisorder #ChronicVestibularMigraine #CheckInWithMe #ADHD #AutonomicDysfunction #ComplexPosttraumaticStressDisorder #POTS

Well… I didn’t think this was going to happen.

I sometimes talk about the grief I have from going no contact from almost everyone from my pastz I had a very wide circle, and unhealthy best friends and toxic family members, surviving dv and homelessness- it just didn’t work that I felt comfortable knowing what I ended up knowing later. Specifically it has been hard to not be an aunt. I went no contact with my sister who was my first abuser. It was while the children were minors. I didn’t know what would happen but my sister was making my cptsd harder to manage after it being triggered by dv. I can feel it in my nervous system when “vibes are off”- someone please tell me this isn’t in my mind because the logical side of me is like- what do you mean???
Anyways very tangential- so my niece got mad at me when I was displaced to Cleveland for an unknown period of time and didn’t tell her. Now at that period of time I was no contact with my sister and really weird contact with other family members, I was still unhoused planning to go back to Dayton- and didn’t want that information passed along. I understood her point and told her that it wasn’t a conversation I could have (or something) and I am so so so sorry. I validated her feelings.
So yesterday I got a message from my niece on IG. She had unfollowed me- I refused to block her. She is still young and hasn’t done anything out of the range of normal for her development and knowledge of the situation. I am so happy! Although I was very sad that she grew tired of my sister’s abuse. I am not sure she knows that’s what it is yet. She moved out and lives with her boyfriend. She is over 2 hours away and I remember that liberty when I moved further from reach of my family. She told me she is “no contact” with everyone but my mom and my mom’s husband. I don’t know what she had heard about me, or what she believes about me. My sister’s abuse became worse when I became disabled even though we live hundred of miles apart and never asked her for anything.
I am worried about my niece though. She seems lonely. I hope when she starts working she gets some social time. I’m trying not to be the overexcited aunt who fell out of the family- but here I am.
#Agoraphobia #PanicDisorder #ComplexPosttraumaticStressDisorder #ADHD #ChronicVestibularMigraine #Migraine #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome

I’ve come to the realization that I’m going to need to up my therapy sessions from bi weekly to weekly. My insurance with cover it thankfully .

I started therapy to work on healing my inner child that needless to say wasn’t great time for me . That of what I remember. Mind you I can’t remember earlier than 15 and even what I remember from 15 to current is splotchy at best. Lots of blacked out moments . I see it in photos don’t recall it etc etc .

Then when I get there lately my current life I am living is becoming of subject. To be honest I think I’ve talked more about the gray hairs a 16 almost 17 year old step daughter is giving me and the household .

I’m not even sure what I’m working on at this point besides decompressing .

Trying to pull myself out of this stagnet rut I’m in . There’s no order .

#MentalHealth #Anxiety #MixedConnectiveTissueDiseaseMCTD #ADHD #RaynaudsPhenomenon #AutonomicDysfunction #POTS #Depression #RheumatoidArthritis

I am having a hard time tonight.

My bf just started a new job recently and now I am trying to adjust to a new schedule.

To catch anyone up: I was unhoused for a couple of years and my complex ptsd got really bad. I have had severe panic attacks since then. I also had to move cities across the state and no longer access my “safe places” and my circle of friends. And after all of this I am having new symptoms pop up so I am having mobility issues. This is all being addressed in therapy- so I’m just venting. 😂 which coming back up to this- it did help.

I do a lot of things- I volunteer, attend groups and therapy, I am working on renewing my school psychologist license, I paint, I advocate, I am a heavy hobb-iest (lol I dabble in a lot of things)- I keep myself busy enough while still having space and time to process things. The problem is with these “extra symptoms” -the ones I have now because of the extra trauma of being unhoused- I have a hard time being at home. (I’m working on it in therapy!!) I didn’t have these in the evening- when my anxiety ramps back up- by myself because these came from being unhoused. I also live in a “new” city that’s across the state from my old city. I am working on building my social circle but with my symptoms it is challenging. I also am working my way with some new diagnoses and figuring out supports I need for accessibility- which kind of factors into the panic of going places. I’m aware of all of the parts of it- unfortunately 😵‍💫 it’s just that the logic doesn’t work for the panic. I wish it did though. 😂 that would be really nice.

Anyways- the whole point of this is I have a hard time coping with change and unstructured time. I know what my therapists keep telling me- I am doing all the right things and it’s just about coping through it. But that really sucks sometimes 🫠🙃I probably should write some affirmations or something.

#Agoraphobia #PanicDisorder #ADHD #ComplexPosttraumaticStressDisorder #GeneralizedAnxietyDisorder #ChronicVestibularMigraine #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #CheckInWithMe

March 6th, 2008 was my first night back in Texas. I wasn’t home for spring break to rest—I came back to see a doctor about my spine. My spinal fusion had failed, and I was in so much pain I could barely function. Though my parents hadn’t fully believed I was sick, they had become increasingly worried after months of phone calls filled with desperation and tears. I was barely hanging on, physically or emotionally.

And then, while I was facing my own unraveling health, I got the call.

My roommate told me that our friend Scott had overdosed. Prescription pills—his usual escape—had taken him too far. He was unconscious, not breathing, and in that moment, I felt entirely helpless. I told my roommate to start CPR and call 911, but inside, I was collapsing. Scott was one of my best friends. My cheerleader. My light in a dark time.

Just hours later, I was in a doctor’s office being told that my surgery had failed. I was labeled a medical anomaly. They said they could manage my pain, and handed me a prescription—for the exact type of drugs that had just taken Scott’s life.

I stared at the paper, horrified. If Scott—strong, bright, and full of love—could fall into the trap of pills, what would stop me from doing the same? This was the first time I looked a doctor in the eye and thought, No. I didn’t know what my options were. I just knew I couldn’t follow that path.

Scott’s death shattered me, but it also woke something in me. I could no longer accept a life numbed by medications and shadowed by despair. His passing was the beginning of a lifelong quest—a promise to myself that I would find a better way to live. Even if I didn’t know how yet.

If you’ve ever felt like there’s no way out, I promise: there is. You just haven’t seen all the doors yet. #EhlersDanlosSyndrome #AutonomicDysfunction

Hi friends!
I really need some sort of remote job to afford, ya know, general living costs and trying to be a healthy human being. I’ve tried to get reliable remote positions but I can’t find anything other than freelance work.

I have experience with marketing and AI, but I don’t have a ton of experience. If anyone has any recommendations, that would be amazing!!!

#chronicsyncope #MastCellActivationDisorder #EhlersDanlosSyndrome #AutonomicDysfunction #ComplexPosttraumaticStressDisorder #RheumatoidArthritis #BrainInjury