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Desperate much? You bet!

Today my wife and I wrote the following My Chart message to my neurologist. We are pretty sure it won't amount to anything. However, sometimes screaming into the void becomes basically unavoidable. I have been getting progressively more symptomatic and actively suicidal... This is weirdly not accompanied by persistent depression. Instead, it is mixed with these slippery changes I experience in my consciousness.

Also, I'm transgender. The fact that there are now places I can't visit unless I am prepared to deal with a legal requirment to go around upsetting women in bathrooms, is seriously upsetting me. Seriously. The fact that most people, thankfully, don't actually care about which door / doors I pee behind (ever noticed how most multyperson bathrooms do have stalls in them, and even urinals are firmly attached to a solid wall? Efectively, nobody ever needs to expose themself to anyone, of any gender.) really just makes this situation feel more socially problematic and obnoxious. Still, the fact is that I do have a female birth certificate although most people do not find that fact at all obvious (and no, I won't show my papers to random strangers and I don't enjoy drag and dressing up specially for a bathroom based audiance would be totally ridiculous).

So, on to the void screaming. I'm showing this to you in part because I hope this is not entirely pointless and in case anybody on here knows where to get actually useful, evidence based help with either highly symptomatic PTSD/ dissociative disorder that is anchored in violent (and to a certain extent ongoing) trauma, and functional nurological issues. I have heard there is such a thing as useful help for both things, but seem to have exhausted the resources I can actually locate so far:

Subject:

Not exactly non-urgent, complicated question, put briefly. This has become a marathon, not sprint. Also, it's Saturday.

Body:

My brain is "glitching" (confusion, lost time, movement issues, pain) alongside KNOWN PTSD stuff inc. medical trauma. In the present I CAN feel ok, but time gets strange. SOMETIMES I'm taking suicide very seriously. Stacked scary symptoms are near my normal. Otherwise I would think it is both my PTSD and dying of an aneurysm at once. No potential sezures yet. Last 3 times I tried ER and hospital got disastrous. No help, cardiac side effects, sexual assault. I need safer, more targeted help.

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I'm new here!

Hi, my name is Avi. I'm 24, I work in harm reduction services/outreach with my wife in rural Appalachia (WV, coal fields) after growing up in the Midwest and studying public health and policy in Oregon. I have complex PTSD and chronic health/pain conditions, and am neurodiverse. My current partner also has PTSD and specifically is navigating how dissociative spectrum symptoms have had devastating affects on their life and losses they've experienced post leaving complex abuse. It's affected her sense of self and reality and relationship to substances and people, despite and within this she is one of the fiercest lovers and fighters I know who's dedicated her life to activism, organizing, and community care and harm reduction work even underground in places systems won't be pushed fast enough to save lives (we protect us!! We give out naloxone and teach harm reduction strategies and do low barrier wound care and try to connect people to whatever medicine can exist for them as safely as possible + do crisis response type things in multiple rural counties w few to no other providers -- I joined her in this state when we got married but did similar work before too. She has also supported me through the lowest and highest points of my last hardest couple years of my life with both health things and complex grief and trauma after i realized and processed childhood trauma and health neglect while working thru covid burnout as a spoonie AND provider in underresourced public health and frontlone community outreach -- all while grieving theloss of my prior two serious would-be life partners,.both in their own ways to the consequences of the failed drug policies / inadequate healthcare access in this country mostly because they found more compassion & (albeit very imperfect) tools for managing their pain / disabilities or mental health crises in the street drug supply / others who felt forced into it, and eventually the inflated risks + social isolation, stigma in every systemic setting, & criminalization added up to in one case a preventable OD and in the second case an aneurysm that would have been caught if my partner hadn't faced so much medical gaslighting, trauma and neglect they would have gone in rather than assuming just more mystery symptoms to be gaslit about and sent home to self medicate w unnecessary risk... My experience has often overlapped..I've never been a chaotic or addictive drug user but have before found myself depending on underground supply and punished by systems/ spiraled into high risk situations id never be in if id been treated as a human by said systems. But when I found harm reduction spaces and advocates across specific caring professions who specifically do see those of us with compounding / mental or chronic health / disabilities / other marginalizations, as full beings, and are willing to meet us where we are & break down barriers, I started to find ways to swim & try to pass that forward doing similar real work.

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I'm new here!

Hi, my name is gkpoole1227. I'm here because I had a congenital birth defect in my heart. I had a bicuspid instead of a tricuspid aortic valve which had caused an aneurysm in my aortic arch. In April of 2021, I had my aortic arch and my aortic valve replaced during the same operation. Directly after the surgery, for three days I suffered with delirium, where I did not know my husband or daughter. It was a very scary time. I would also say I experienced brain fog for months. I have had some vision problems as well- though that seems to be improving now that I am 2 years out. As some other women have stated, I also had some hair loss after the surgery.
Kimberly Poole

#MightyTogether

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Nerve pain #Depression #Anxiety #Pain #nervepain #ChronicPain #MentalHealth

I really hesitate to make this post because I am not sure what help is available but it’s 1am and I still can’t sleep and I getting quite desperate.

I have a bad habit of not seeking medical help promptly because of doubts any thing can be done. Twice I have ignored very small black specks on my face only to have them diagnosed as skin cancers requiring significant surgery. This has resulted in rather obvious scars.

During Covid I ignored stomach pain only to have a life threatening aneurysm diagnosed on my liver that came close to being fatal.

In November I didn’t ignore symptoms in my leg, mainly because the pain was insane. I was diagnosed with acute compartment syndrome and was 8 hours away from having my leg amputated.

Now I am being kept awake most nights with shooting pain going down on the leg that was injured. I have tonight booked an appointment for the day I get back to Australia. I have no experience with nerve pain and I am hoping someone can give me wisdom on its treatment and ideally some hope that this is something that can be treated and not something I will have to put up with on a long basis.

I welcome any feedback. Thank you.

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An Open Letter From A Mama Whose Child Became Medically Complex After Adolescence

Yesterday two of my three children went back to school for the 2022-2023 school year. We did all the things to prepare for the first day: schools supplies, meet the teacher, picked clothes out, talked about what they looked forward to and what they were fearful of.

I walked them to school (we live a few houses away), hugged each of them and waved goodbye reassuring them they were going to have a great day. Then I turned around and headed home.

On my walk I was flooded with the feelings my heart had been storing. My other child will not be returning to school with his siblings because just 11 months ago he suffered a severe hemorrhagic stroke caused by a ruptured aneurysm at the site of an unknown arteriovenous malformation within the left portion of his brain. That was a lot of words right?!?! Yep, that’s what I thought too when it all happened.

The aneurysm that led to a catastrophic bleed resulted in a brain injury we could have never foreseen. See that’s what happens with rare diseases; there is not enough research or education for people to be aware they even exist. Even when the result is lifelong recovery to a degree that is different for each case.

Some parents are informed pre-birth about genetic anomalies or diseases because of genetic testing or ultrasound results. Some find out after the birth of their child takes place or within the first few months because of difficulties or symptoms. We were completely unaware there was a ticking time bomb tucked deeply away in our son’s brain just waiting to explode.

Having your child acquire their disability and become medically complex after their adolescent years is… well, not something words can describe or that I would wish upon anyone. The grief is heavy and the learning curve steep.

I have joined groups of other parents with similar diagnosis’s only to be utterly discouraged by seeing so many others’ miraculous recoveries or much shorter timelines.

I have also built community with other moms who know all too well what it is like to have a medically complex child. I feel more support in these relationships, but still a hole and lack of relation when it comes to the stage of life we are in and grieving what we have lost.

I cannot care for my now 10 year old the way I could if he was 4 or 6. He is just too big. I need to use a lift for transporting and a slide sheet to move him in bed. I cannot pick him up and move him from place to place nor can I easily change him.

The advocacy and focus is also different. They advocate to embrace who their child is and the fact that they are no less and their needs are human, not “special.” WHICH IS ALL COMPLETELY, 10000 PERCENT ACCURATE AND ON POINT!!

I’m just not there. I’m not in that place or space. My child, at this time, is no longer capable of expressing who they were or doing the things they once did. My advocacy is more towards awareness about grief, sharing space and about his condition.

Only a parent who has experienced their child acquiring a brain injury, through disease or trauma, later in life knows the mourning and pain that accompanies every old photograph, every childhood video, every backwards milestone, every part of moving forward your other children experience without their sibling, every word not spoken, every smile not taken, every dream not lived every story not shared.

My goal here is not to discredit other parents’ grief or pain they experience with their children’s disabilities. Or their voice and message. Mine is different, not better or worse.

I grieve what was, what would have been and what could have been. Others grieve what would have been and what could have been. Both are still grief that needs to be explored and dealt with. Both have experiences that are valid and real.

The intent of my writing is to shed light so that when comfort or advice is shared, it is done so with knowledge and wisdom. When you approach a mama to a medically complex, rare disease, disabled child and share words, please be cautious to not put her in a stage of life she is either not prepared for or will never reach. If you do so, those words become a poison that attacks her heart and mind instead of a balm that soothes her soul. #BrainInjury #TBI #avm #PediatricStroke #RareDisease #disabilityparent #MedicallyComplexChild #MedicallyFragile #medicalmama #medicalmom #Caregiver

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Physical pains

Was just wondering if this happens to anyone else . If I get a headache I think I’m dying or have a brain tumor or an aneurysm, etc. if I get pain in my legs I think it’s a blood clot or something severe. Every pain I get I think I’m dying and it’s so bad I just lose it and call my mom who just says you’re not dying . And my boyfriend says I think If you were really dying you wouldn’t know. Well , these things aren’t helping me. I think I’m dying pretty much every day and it’s scary. My doctor , he just says this is normal with anxiety. This is no life to live. I’m not living if I feel like I’m always dying. I need help .

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“It doesn’t matter how slowly you go as long as you do not stop.” — Confucius

A positive mindset can make all the difference, but staying positive and mindful when you crave immediate results can start to wear at even the most patient of people. It's also easy to feel you're falling short when progress doesn't come to you as quickly as first anticipated or desired. But it's vital to your long-term progress that you remember it doesn’t matter how slow you go, as long as you keep going. Whatever your goals are, momentum is still momentum. Keep the ball rolling. You're already farther ahead than you were yesterday!

#NeverGiveUp #recoveryjourney #physicalrehabilitation #ProgressIsProgress #Dailyinspiration #selfcare #Stroke #Aneurysm #strokethriver #strokerecovery #Physicaldisability #settinggoals #Motivation #FindingForward