***this contains videos that are unedited of me experiencing and processing my medical journey. There is trauma in my medical journey. Trauma makes you feel unsafe:specific things happen to your brain when you don’t feel safe… and then if your brain has ever had “practice” not feeling safe (ie:prolonged, or unanswered trauma) your brain remembers and hot wires those responses. I am showing it to show my authentic struggles with this disease. Going to the hospital triggers my CPTSD- this is the aftermath of that on my body.
Mental health is a priority, and the level of stress the world has on us is a problem for many- bubbling right below the surface. That is the most dangerous kind of stress- because it sort of hides then explodes. It’s a brain game, I promise you it isn’t permanent… but do take it seriously and talk to someone or learn more about it for you!
If your brain is starting to play games with you please call the help/ crisis line, they are there 24/7 (everywhere has them- just google crisis line I don’t want to link old info). Even if it is just so that you don’t have to be alone through a tough feeling- that’s okay… that is why they are there, for support. Your concern is important no matter how small or “silly” or huge and suffocating… it matters, because you matter. Self-harm of any kind- even just binging is “enough” to reach out for help! Crisis intervention IS trauma informed care- it is safe… please reach there if you need… any crisis line can help you… ❤️ stay safe, stay here… you matter! ❤️
Thank you for coming to my PSA. I love you.
Welcome to my shitshow. -B. 💋
My body has conditioned to being sensitive now. I was in trauma for two whole days, so I just wanted to be authentic and honest about what my normally healthy brain looks like on trauma.
To be very clear I am not discounting the need for any medical service worker- and to know me is to know that I have compassion for the structuralism that the humans doing those jobs have to endure to save people the right way! ❤️ I have emergency nurses in my family. I have respect and gratitude for the amazing work…
I am promoting trauma-informed care for patients, because we need it- and it isn’t available. Anyone that might have started with compassion and empathy has Less and less as the compassion fatigue sets in and they become more under duress from being inundated with even more systems for the CDC – new fucking gowns and masks and all of the Ppe and rule changes that have to be implemented with people who are struggling with that trauma – its absolute turmoil…. how can anyone feel like they really have a second to breathe let alone actually help. It’s just a ball of frustration. My point is… I am working out my frustrations about a rare disease and it’s struggles with the system. Please don’t use my story to NOT seek care… I am just advocating for better care.
Ask for they help you need, always. The restrictions on your free life this past year have been gradually impacting everyone. Taking really good care of your mental health is becoming”trendy” medicine just hasn’t caught up yet. You are not alone in anything that you are thinking- I promise you that! Just take it to a professional- even our most loving and helpful people can be damaging when we really need a pro to guide us! Trust me… I’ve got the pro… she is a self love game changer because she sees my trauma where I can’t!
Pain is the root of my medical problem, and pain especially prolonged pain that wears down my central nervous system triggers my systematic trauma responses… which are elevated in my body. Trauma… We all have it and yet we never acknowledge that it has a way of making even the simplest of things so much more complex.
Well, I suppose let’s just hit the ground running… I had this grande idea of how my vlog portion was going to launch and slowly start to show my journey as it unfolds with pretty shots with new ring lights and fancy gimble. Welcome to the shitshow… buckle up!
I thought it would honestly start with good news; this could all be “timely” news (I’m not quite in a space where I can consider my experience in the full light of positivity yet.
But here we are- welcome to the shitshow. Let’s see where this journey takes me!
Starts off pretty normal- except the dentist. I am unbothered by the dentist, just there for a cleaning and looking forward to the feeling of my freshly cleaned teeth after not having access to benefits since losing my job the December before… it was time! We learned that I have been grinding my teeth, very common apparently for people who are anxious. I need a night guard. And she recommended about 4K worth of uncovered Botox to unlock the super muscles I have in my jaw now. The grinding is so bad there is some damage to my big teeth. She wants to place crowns. My teeth are healthy and normal otherwise very strong.
Jason was back to work, the kids were eager to get back to school… I was eager to get back to them being back into routines, so that I could do the same!
I was feeling alright… had a bit of pain and began my inflammation cycle between ovulation and my period… emotionally feeling the shift of the hormones… but I was keeping consistent and focused on my upcoming goals for 2021. I went on my walk to check that little thing off my list. While I was walking I felt really unwell.. I chalked it up to not having walked early enough in the day to getting balanced, plus just the back to school/work shift with my hormones.
By the end of my walk my left leg had shooting pain deep inside near my inner hip socket. I was having a fluttery heart palpitations and was a little disoriented.
At this point I decided it might be blood sugar maybe thyroid is off with hormone switch. I got home and had a snack and breathed through a couple more shots of pain.
Then I took my kids to the mall, one needed a clothing thing and I had a return. 2 stops. No dilly dally. I had to bend over and breathe mid mall a handful of times.
By the time I was home I was bending over in pain more frequently… this wasn’t like my normal pain, it was sharper and deeper and triggered with blood pressure movement, not physical muscle movement. I took off my jeans and looked at my legs and inspected my varicose vein- my left leg was visibly larger – in spite of being PCOS swollen in both legs- my leg was still significantly bigger. My vein where it normally bulges was soft and gone… and there was a hard piece about half way up my leg between where the lump once was and the pain was idling in my hip.
The symptoms of a possible blood clot are not ever to be messed with. When you add up all of my stuff it equals an extra likelihood of blood clots and other systematic abnormalities. This is why I am so focused on health and rejuvenating… because I have a chance to heal, if I don’t wait!
This is why I am so hyper aware of my body… we’ve come to have a very intimate relationship lately.
Emergency medicine reduces being aware and wanting to preserve your body by asking and or knowing anything about medicine, or your own body to being a hypochondriac, or a drug addict, or some other form of attention seeking or line jumping tactic.
With my diagnosis of centralized sensitization syndrome, I became so much more aware of everything pertaining to my health.
I have made significant lifestyle changes over the past two years. I know that the longer I wait, the longer I do tests that I don’t really need that give me just tiny pieces of information, the further I degenerate. I can’t do nothing… so I have been making changes while I wait.
This is how the medical system handles my chronic condition.
I don’t believe any human should be treated like this! Trauma informed care needs to come to be implemented in medical systems immediately!
Pictured below is what happens when you google my condition. Triage had this information and didn’t know what it meant…. no one bothered to look… I just cycled up into CPTSD for 9.25 hours.
I had the tests. I am perfectly normal! My blood is looks great, everything looks amazing!
I have asked my doctor months ago for a referral to a neurologist. I was referred to an endocrinologist after I insisted that I should speak to one… when I finally got to talk to him on the phone, it was one traumatic intake then a referral to an even more specialized pelvic Endocrinologist… because I knew more about the vagus nerve than he did… I was too challenging. How does an endocrinologist need more guidance when a patient simply asks…
how do I care for my cns better?
But what about just my central nervous system? Any advice?
Dr. : Ask the vagina doctor, I’m not sure….
The most infuriating thing for me as a patient is being treated like a piece of a broken human no matter where I look for help.
I have chosen to value living in a whole human way, in harmony with my illness and fix what I can and learn to dance with the rest.
I have to value harm reduction for myself because of the complexity of my illness, and the rareness of it all. If I don’t advocate for myself now- I will lose organ functions much sooner than I need to.
The wear and tear on my body is real. I am a little nervous to get my genetic testing back to see the real damage waiting has really done.
Waiting for the help doctors have acknowledged I need- but when I go and seek emergency treatment, with uncontrollable pain, I don’t have access to the mri (even though I have literally waited much longer than my share of time, nearing another year)
I’m waiting for a surgery that I am so far down the list for because my condition is so misunderstood, and my diagnosing doctor is sooooo busy because she is one of the best. Getting to her took me 2 years. (Before I was on disability sick)!
I’m waiting while I do everything in my power to regenerate as I deteriorate.
How long are people expected to tread water while they wait in and out of CPTSD induced by 10-40 day pain cycles?
I am taken less seriously because I have strong resiliency skills.
Rare chronic illness is no cake walk. I should never be repeatedly traumatized when attempting to access help. I understand neurological pain, I should have the respect of being informed if they suspect that over me upcycling in a waiting room.
I should have the choice to get a second opinion in emergency medicine when I ask for one because I don’t feel like a doctor is taking my rare disease seriously.
I am an ultra high functioning case. My therapist had a hard time identifying when I was in full trauma at first. I had to be willing to tell her what I was really feeling, and not hide.
My wish is for medicine to be systematically trauma-informed, because we all need that.
You can’t see my disease, just like you can’t see the trauma that anyone has carried.
Trauma-informed, with self love, and on purpose…. that’s how I choose to live, every single day.