Begin brain dump…

Begin brain dump…

5/29/19 4:46 pm – today was pretty rough. i’d been through the ringer trying to get medicare to answer a simple question and then i spun out of control from there. the following is a brain dump (i frequently fire up email and just type away as the thoughts flow freely and so as not to lose the natural train of thought.)

begin brain dump 3:24 pm

…the entry back into the medical system hasn’t been easy mostly because our healthcare systems haven’t fully caught up with medically complex people who already have a built in fear of people. in order to make it through that process, you’d have to be really comfortable with being repeatedly asked to recount your family history for each medical professional along your journey and therein lies the trigger…

given my history of sustained childhood trauma – sexual, psychological, physical and emotional from my earliest memories at the age of 2 – and continuing all the way through to the age of 14 when i first became a runaway living on the streets. it’s no wonder i have trust and abandonment issues to this day.

i’ve never stopped running and i’ve never really ever caught my breath tbh. i’ve been in an emotional dingy flailing through the sea of life for as long as i can remember. singularly. alone. afraid. let down. brief moments of defiance followed by longer moments of overshadowing self doubt…

i lack confidence. i lack trust. i lack resilience. i lack built-in healthy social cues and skills necessary to keep people in my life. i don’t lack insight or awareness however and for that i’m very grateful.

insight has allowed me to process a lot of brutal changes in my life in a very short three year period of time, all without stopping to fully process those feelings because i simply didn’t have that luxury. attempting to recover from emotional whip-lash isn’t an easy process but at least it’s familiar…unfortunately.

the loss of a mother who died alone in a hospital from pnuemonia. i was sent a usps box a little larger than a shoe box that represented her life. i tucked it on the top shelf of my closet and barricaded it with other storage boxes like a ticking time bomb…awaiting when my courage to break the seal overcomes me and i peer inside…see faces i’ve been fighting against in my dreams and flashbacks for decades. it’s torture untangling the good memories of her – with her – but it’ll come when the time is right. for now it’s simply too dangerous…

picking myself up after being knocked down by my father’s side of the family hasn’t been easy. the last interaction with them was before the holidays yet the feelings and emotions are still fresh and raw. having to deal with verbal abuse all while being keenly aware that his current physical and mental decline might be my own future playing our right before my eyes yet no one cared. a grim future confirmed by the same fate that ended my grandfathers life when he could no longer get himself out of his wheelchair on his own. thats my father today at 79, my grandfather gave up at the age of 82.

in short – complete lack of mobility, decreased strength resulting in a wheelchair, ultimately dementia and then the final lack of will to simply continue living. i’ve had a lot of family members give up on life. they reached a place in their lives where they just gave up eating and let go of their timeline…

the word timeline is this linear way i view life. we all have one. in an ever expanding universe my vision of it is that of a bright light blue beam, disappearing into infinity behind and ahead of you. perhaps you’re one with your fist firmly grasped around your timeline, riding it for all it’s worth. connected. plugged in. you understand it and you’d be right there with the majority of other humans who are healthy and well adjusted. that see a future even if it’s “unknown”.

then there’s people like me. left hand lightly resting on it’s electrical hum, tangible yet ethereal, i flirt with just how far can i loosen my grip…can i let go completely and grab it again in time or is it finite once i let go…i wrap more fingers around it while looking all around me at the infinite other timelines near and far. left, right, up, down, is there anyone near me that’s on the same path or same speed? will i be alone when i let go of my timeline?

will there be other strangers sharing the same wink and nod that we’re ready at the same time yet not alone? a comfort for all of the other ‘party-of-one’s’ in the world as we let go in unison…

i’m not connected right now and that’s okay. i’ve lived my entire life touching the timeline of life just enough not to get entirely lost, but loosely enough so as not to feel everything it throws at me along the way. not always but that’s the goal. soften the bumps and be less afraid when change rears it’s head and adjusts the speed to uncomfortable and terrifying levels.

pity about a timeline that i never asked for no longer serves a purpose for me. it robs you of today’s time…the time you need to right the sails and see your way into a safe harbor. i’m the master of this ship. i choose where i set my sights.

even after getting to a place of “okay, here are your insurance options based on location, returning to boston isn’t possible and that’s just where you are.”  the larger question is still “just how far am i willing to go in order to avoid my physical medical needs because the mental anguish will just be too much?”

the pcp side of the process, at least as far i’ve experienced up to today, hasn’t fully caught up with supporting the mental health side of your limitations. don’t let the slick ads and misleading websites fool you, they really haven’t caught up and disclosure, imho, is still very risky.

i don’t have the energy to lament the misleading, outdated and biased use of ANY “Find A Doctor” search feature currently in existence. google it, they act as funnels and not in a good way. out of date info and even if you do weed out the bad info nine times out of ten you’ll call and something makes it not possible. “They’re only in the office Tuesday afternoons and Saturday’s from 7:00 am to 10:00 am.” really? how is that a PCP???

telemedicine may be the buzz word du jour but reality couldn’t be farther than the truth. looks good on a branded website or a mission statement but good luck with that…

so… today i once again tried to get a simple answer from medicare and once again it was like speaking martian… “If I call my Dr. because my elbow, wrists and joints are hurting so bad I can’t drive is that covered?” <enter circular conversation head explosion in 3-2-1…> “As long as it’s medically necessary and the Dr. deems the appt. necessary.”

blink…blink…blink

“so you’re telling me that when i’m experiencing pain, that is getting worse, and you know I’m on SSDI (disability). You can’t tell me whether a routine office visit for pain of a key joint such as my elbow is covered or not and that i won’t get hit with a bill that i can’t afford afterwards?” “As long as it’s medically necessary…” CLICK

earlier i tweeted something to the effect of no wonder suicide is on the rise. people are terrified to see a dr. because there are zero guarantees you won’t end up one bill over the line…that one bill that breaks your financial back and sends you into credit, financial and medical free fall.

that’s the anxiety. that’s the key issue. that’s my barrier.

today i was told by a very nice woman that in today’s system “you really need to be your own advocate.” and not in a bad way. she let me know she ‘got it’ and that was based on her experience, not from a judgemental way. problem is back at the start of this post. the lack of self confidence and resilience. i just don’t have those skills.

i know i’m precariously close to giving up my pursuit of medical care and by the same token i also know i needed to reach out for help today. the woman at the agency i contacted was super empathetic and understood my situation. she was super patient and sensitive. she could tell i’d done a lot of work in therapy so we were able to use familiar terms which made the conversation easier.

i made sure to fully disclose my trauma and how that manifests today in the form of complex ptsd in the form of anxiety, panic attacks and general fear of being in public…today. i haven’t always been this way of course and hopefully i’ll find my way back soon.

i’ve reconnected with a friend from high school. a friend who’s family gave me a place to live during those turbulent times. it’s taken me a few years to sort things out. i pushed a lot of people away during this life altering transition and i’m still coming to terms as to why while finding ways to make amends. when you’re in that dark place and you’re only connection is social media or other electronic means, other people’s happy lives hurt even though it has nothing to do with them but everything to do with you.

when you’re parents and family should have been wiring your brain for a life of confidence and self esteem but instead instilled nothing but fear, worthlessness, not capable and defective on a daily basis…well…that’s a whooole lot of re-wiring that needs to be done.

while i wait for a call back the best i can do for today is the serenity prayer.

God grant me the serenity to accept the things i cannot change; courage to change the things i can; and the wisdom to know the difference.

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