Autonomic Dysfunction

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

If something bothers me, I feel itchy until I feel like I have processed it. I need to do a lot of external processing. Idk why. I used to journal but that has been harder for me lately.

So I kind of have been talking about the things that have been really bothering me a lot. You know what I’m talking about. And how it links to my trauma. So I have been taking some action by making phone calls. At two points, I noticed some weird things going on, and I called the news.

They got back with me today; they knew about my history about being unhoused, about my education, etc from the information I mentioned when I called those two times. The woman was so nice and she helped me share my story about being disabled, unhoused, needing benefits, and why advocating is so important for me. She told me “okay, this story will air during the 5:00 news.”

✨✨✨Did I know this was an interview? No. I am wearing a zip up hoodie, dry shampoo in my hair, yesterday’s mascara under my eye from being slept on. ✨✨✨

😂 So I just shared a lot of information about my story on the local news where I grew up. Most people probably don’t know I was unhoused, especially people from my past. I could have decided against it. Especially because my family live here too. But if it gets out to anyone, I really am not upset. I am lucky to share a story about how hard it is because people don’t understand the disability rules. And it doesn’t get brought up enough. And there is a lot of stigma and misinformation I am willing to correct with data and lived experience. I think I have done a good job.

Anyways, let’s see what happens i guess?

#ComplexPosttraumaticStressDisorder #Agoraphobia #PanicDisorder #ChronicVestibularMigraine #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #Disability #MentalHealth #CheerMeOn

I’ve been on a GI journey for a very long time now. The last few years feels like nothing has been done to help - regardless of the many doctors appointments. I’ve tried a few different prescriptions and metaclopramide has been a strange one. (I’ve done research). The pros are that I can actually eat and keep food and water down! But I feel painfully woozy and irritable. I feel tired yet restless, foggy yet angry, and just overall more depressed than usual. Has anyone shared this uncertain experience? It’s like I just want to step out of my body for a moment and just not feel so overwhelmed by EVERYTHING. Any advice or support would be appreciated! 💚 #AutismSpectrumDisorder

I'm too lonely today. I'm tired of fighting for disability, I'm tired of doctors who can't help me because of lack of knowledge, I'm tired of fatigue, pain, isolation and I'm tired that my wheelchair is too small for me and I'm tired of living. #EDS #AutonomicDysfunction #Fibromyalgia #ChronicFatigueSyndrome #Autism #ADHD

Hi.

I am currently working on learning to relax.

Like truly learning to LET myself relax. This isn’t about the skills. I know “what to do.” My brain just doesn’t let me.

I just recently found out that I “likely have POTS” and I have had chronic migraines for years (currently disabled ). I just kept doing stuff because I didn’t want to miss out on living my life and being outside. This is the first summer I’m trying to listen to my body and stay out of the heat until I really know what’s going on and what works to manage symptoms enough so I don’t flare up. But it’s hard for my adhd and panic attacks.

The thought challenging of that guilt or sadness about missing out is really hard. I know it won’t be this way forever, but it’s hard right now.

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