Autonomic Dysfunction

I am not doing well. My anxiety has been ramped up, my panic attacks have been pretty bad lately.

The cost of living is becoming really burdensome. I have already felt like I am a burden because I cannot work and only have an income less than $1,000 a month from SSI. I’m 39 years old and want nothing more than to manage my conditions and return to work in some capacity.

I have been trying to do a few different approaches for trauma therapy and my trauma therapist is amazing. Unfortunately she doesn’t work within the insurance system. We were able to afford the private therapy for awhile but now we cannot. I have luckily been able to get a grant to cover the last several months, but that will run out soon.

I am going to have to stop or significantly reduce my trauma therapy. I don’t know how I am going to be able to work through my trauma, but I’m just going to have to.

My bf asked to borrow some money from his mom and she lectured him about how I need to work or move in with my mom (and if you saw my more recent post about my mom- we all know that is not an option). He has never borrowed money from her before, and we have told her in great detail my health problems. I had a feeling she wasn’t listening because she never really acknowledged what I said, and would just make a comment about something else.

I cannot tell you how infuriating it is to be seen as an object that can just be moved so me and my disability are someone else’s problem. Obviously and thankfully, my bf is not going to stand for that. But the hurt is still there because people don’t see my worth and haven’t seen I became disabled. The stigma is really bad for people with disabilities and it’s honestly getting so much worse.

The idea that I should just move somewhere else is a common refrain I have heard since being disabled. My friends and their families kept deciding what was an option for me and often would just tell me to move somewhere else, which would not fix my problem at all. It’s hurtful, so hurtful, that this is coming up again. I am so tired of not feeling like a person because I have chronic conditions. I’m tired of the way people have treated me. I’m so upset that this is coming up again.

Before I became disabled, I was respected by my friends and family. I have no idea how my value seemingly did a 180 because of my disability status. And honestly- if health insurance wasn’t as big of a deal here as it is, I would have significantly less things to worry about. I would be more likely to return to work sooner because I wouldn’t be worried about how much it costs to keep me alive and if the job I take will provide adequate and affordable health care for someone who will still need treatments, medicine, and support on a consistent basis.

Not only that, as a previously unhoused person, I am very triggered about the comments and policies that are happening around the United States about the unhoused population. I am so scared I’m going to end up homeless again. So scared. And this time, I wouldn’t just go hungry and without adequate living conditions. Social safety nets and programs to help people like me already were lacking (especially with housing) before these cuts. Now there is talk of sending the National Guard to other cities, including in my state.

I went downtown with my boyfriend this weekend and we saw people who are unhoused sleeping where they could; and i couldn’t help but feel so scared for them, and for people like me. I am so scared.

Please note this is not a political post. I am not engaging in a discourse about how my triggers are related to politics and what my reality is. I am also venting and will talk to my therapist about this, as she has a bigger picture of my circumstance and options.

While i appreciate advice, today I need support.

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

Hi!
I have a question for other people with chronic illnesses who see a number of specialists.

I have two therapists, a psychiatrist, a case manager (finally!), a primary care doctor, a neurologist, and an autonomic specialist. Most of my symptoms come from unrelenting panic attacks and high anxiety which trigger severe intractable migraines. The autonomic specialist is helping with the symptoms more related to pots- movikity, nausea, lightheadness, dizziness, fast heart rate, etc.

I’m on a number of medications to treat multiple conditions. I am medication hesitant; my providers know and I discuss my fears with the people who prescribe anything so I can feel comfortable taking it.

There have been far too many times where someone (a medical professional) who doesn’t understand the complexity of my conditions and the severity of my symptoms try to tell me I’m on “too many meds.” Which just starts the fear all over again. I end up spending my sessions trying to talk to my therapist about if I “really need it” or if I am “damaging my brain.” I talk to my psychiatrist about seeing if I can reduce my medication yet (I cannot, we still are trying things out). Not only that- probably almost half of my meds are as needed- especially for panic and migraines.

I may have told this story on here before, but last year a pharmacist wouldn’t let me pick up my adhd medication unless I explained why I need it. (BTW- I specifically request the psychiatrist test me for this because I’ve had the diagnosis but never was tested, and i wanted proof before I started meds again). I told him to talk to my psychiatrist because she advocates for me and I’m tired of explaining over and over again why I am on what meds. I was able to pick up my meds by the end of that day and my psychiatrist reported him because there was no interaction and I have been taking these meds for awhile and picked them up from that pharmacy.

Last week , someone from insurance asked me to explain my meds and why I am on them. And now I’m recycling these fears and know that my trauma therapist and I are going to have to work through that fear again.

I’m going to type out a document with all of my medications and what they are used for because it really does activate me and make me less likely to take my as needed medications like I’m supposed to.

My question is: Does anyone else experience this frequent request to justify their medications to not just all the service providers, but also other people who are “involved” but don’t know me (pharmacist, insurance people, intakes to get new services)? Does anyone else get triggered when this happens? Is it just me?

Thanks to anyone who read through my long essay on being afraid to take my as needed meds, again. ❤️

#ComplexPosttraumaticStressDisorder #MentalHealth #Agoraphobia #PanicDisorder #ADHD #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #Migraine #ChronicVestibularMigraine #ChronicIllness #Disability

In my area, 7 people were recently indicted for Medicaid fraud- they were all providers billing for services that weren’t provided to clients.

This isn’t the first time I heard that providers are often the ones who are responsible for the (relatively small) fraud that occurs. And in fact- it reminded me of something.

When I was unhoused, an agency was supposed to be giving me case management services (especially for housing) and didn’t for months. I lost my housing voucher. I had to final a grievance against the agency all while telling them that they were billing my health insurance for services they weren’t giving to me. Then I had to file a grievance with the adamhs board. All those months they were billing for services I wasn’t getting.

If this is the waste, fraud, and abuse that’s happening- why are we scrutinizing the people who need it rather than the agencies? My previous posts on here detail the amount of times I have had to switch agencies because someone at an agency was violating my rights. I know i am not the only one who experiences this.

#Disability #Agoraphobia #PanicDisorder #ComplexPosttraumaticStressDisorder #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome

I recently posted about an EO that was put out that makes room for institutionalizing anyone who is unhoused. The document implied that people who are unhoused are either “mentally ill,” “criminals,” or “addicts,” a common trope. It is not law, but it can be used as justification- I will not further expand on why I am concerned about that.

It has been very triggering for me, as a person who somewhat recently was unhoused and saw exactly how hard it is to get housing- no matter how hard you try (you can also read previous posts I made here from about 2021-2023 ish).

Since then, there have been posts from the current administration on an online platform that one of my senators is reposting on IG. These messages are about kicking out people who are unhoused in DC. Where? There isn’t a place for them to go. He also stated that those who don’t will be relocated far away. He is now saying they need to “move out” immediately. The fact that my senator is reposting this is terrifying. It means he supports this. He now has the language and executive order for it.

This is coming after my other senator is telling his constituents that we need to have a better work ethic and work more for our kids and grandkids, like our parents did; while also saying that we should get kids into work sooner. Do we see the contradictions?

I am so scared. I know I am housed now, but i have seen how close most people can be to losing their housing stability. I am constantly worried that somehow I will become unhoused again. I feel safe with my boyfriend, but while I try to regain footing, I am being met with really big triggers that remind me how precarious things are.

How does one heal from trauma when the current state of the world feels so unstable and fragile? (Not watching the news is not an option and is not recommended by my therapists or my psychiatrist)

Still crossing my fingers for EMDR to work 🤞

#Agoraphobia #ComplexPosttraumaticStressDisorder #PanicDisorder #Disability #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #Migraine

I am not telling many people I know about this, but I decided to study to see if I could pass the exam to renew my school psychologist license.

I still am not able to work, as I am still working through various things and I have a lot of symptoms. I am still disabled.

However, I do want to see if I can get my brain to start performing more work/school tasks, if that makes sense. I have weird gaps in my functioning that I am hoping that EMDR will help (mostly things tied to trauma from being homeless and violations of medical rights). I still struggle to concentrate on things, and understand things. But if EMDR works like I hope, my panic attacks will be reduced significantly, I won’t have as many flashbacks, and I won’t be as dysregulated. This will obviously take time. I also have no idea what is going on with my physical health conditions.

I don’t know if I will be able to return to work any time “soon,” or if I want to return to the same field. However, it is a profession that is high in need and it’s kind of a protective factor for me, as well as a test (literally). But one step at a time.

#CheerMeOn #MentalHealth #Disability #ChronicVestibularMigraine #Migraine #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #ADHD #GeneralizedAnxietyDisorder #Agoraphobia #PanicDisorder #ComplexPosttraumaticStressDisorder

Attempts at case management to help with my functional tasks have been unsatisfactory to say the least.
It has led to some medical trauma, especially after negligence that resulted in losing my housing voucher and me homeless (this was back in 2021).
Early this year I had an agency discharge me from case management services because they kept trying to push me to meet with a psychiatrist on a Saturday when I wasn’t comfortable or able to do so. (I contacted the local board of mental health and thankfully my grievance was substituted, however I did not want to stay with that agency).
I tried another agency and it was really hard to get there. I am pretty sure I posted on here about it.
Anyways, I am finally assigned to a new case manager. This one is at the agency I get art therapy from so my therapist is going to talk to the person before we have our appointment. That was yesterday. Today I got a call from him and I asked if he had talked to my therapist. He had not (I didn’t expect him to because it was barely 24 hrs later). So I told him he probably should talk to my therapist before we have an appointment. He agreed and hopefully they will talk and i will meet him next week.
Then I can finally get to things like the tests the doctors have asked me to do months ago but couldn’t make it into the offices to do 🙃
I am so grateful I can advocate for myself and that I have someone to help me explain it all. I also think this is a huge improvement because I really struggle to accept help, even though I need it. My art therapist and I are really working on allowing myself to need help.

#Agoraphobia #PanicDisorder #Anxiety #GeneralizedAnxietyDisorder #ADHD #ComplexPosttraumaticStressDisorder #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #ChronicVestibularMigraine #Migraine

My psychiatrist and I did gene sight testing this month and today I had my appointment today.
I usually know a decent amount about this stuff, but I am confused (so is she). My “levels” are high and that means I lower doses of medications are recommended but I don’t feel anything on most meds. Even if they are for the first time I’ve tried them.

My cptsd symptoms mostly present as high energy, panic attacks, and a lot of body sensations. I rarely experience episodes of depression and we are pretty sure we have the correct diagnoses. But the anxiety is so hard even though I am doing so much work. I don’t know if it’s cortisol, or that my trauma response is still too high, or if it could be something to do with my thyroid or my liver. Anyways, I’m going to have to email my doctor because my therapist thought something was up physically since my anxiety is still so high.
My doctor is trying me on Limictal now. I’m concerned about issues with my memory because it already is pretty hard due to brain fog.

Anyways, thank you to anyone who reads this. If you can relate to any of this, please let me know. I’m usually good at identifying causes and I’m just so confused now.

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

I'm so tired every day. After little chores done, after shower, after eating. I need strength to go through medical evaluation for my disability documents and I don't have any. I'm broken and broke
#EhlersDanlosSyndrome #MyalgicEncephalomyelitis #Fibromyalgia #nephroptosis #Depression #AutonomicDysfunction