Tag: Disability

Another closed door…

Another closed door…

contacted my old therapist in Boston. got the same reply i’ve been getting for months from All healthcare professionals. “Oh I don’t know anything about Medicare, that’s not my thing.”

Really? Than why and how is it you’re a Medicare “P R O V I D E R” yet you know nada??? Yeah…okay.

all i can say is that i truly am in a no mans land when it comes to medical care or mental health care. of the hospitals or medical centers that within driving distance of me the locals won’t even go to for specialist care.

if i’m lucky enough to bump into a neighbor long enough to strike up a casual convo, they all say the same thing. “I’d never go to that hospital, we always go to Boston, it’s waaay safer.”

so wtf am i supposed to do. i can’t drive that far on a regular basis. so far no one in either the medical side of things or mental health side of things seems to know what the fuck a Social Worker is or how to get one.

how, how the fuck is it that you can be disabled, yes i have my social security letter, be on Medicare AND have a Blue Cross Blue Shield Bronze supplemental plan but i don’t qualify for any type of outside help coordinating all of this??? zero? zip? nada? Hello???

i fantasize about just selling my house and taking whatever cash is left over and then try to get lost in another country somewhere. i mean why not just get a passport/visa and whatever else it takes and just leave the US all together?

i don’t have family any longer. i’m done chasing after friends who inevitably never call you back or make the effort to reach out themselves, so if i’m truly a ‘party of one’ as i call it, no one will miss me anyway.

if all else fails there are always the more immediate solutions.

when you’re an adult male of early childhood sexual abuse by a female family member, your world and perception of people is forever changed. you ‘may’ find a way back to normalcy and i’m thrilled for you if you have.

that’s just not in my story unfortunately. mine is shaping up to be one of solitude and permanent loneliness because i’ve been kicked to the curb so many times i’ve just given up trying. maybe i was never meant to understand how to navigate friendships or how to build an extended family of strangers.

i dunno. so many maybes…still so much left unanswered…

with whatever energy i have left in this timeline maybe i should really un-tether myself and just go off into wherever the wind might take me. it’d certainly be better than struggling with a healthcare system that has zero interest in helping someone like me.

life’s not so kind to single white me of a certain age, we’re always the first one’s to be cast offs of our society…

I’ve been coming to this decision for quite some time…

I’ve been coming to this decision for quite some time…

I’ve resigned myself to the fact that my health is what will ultimately decide my timeline.

By that I mean given the lack of support to get to and from appointments mean I don’t have any other choice. My health will get worse. I’ll eventually become wheelchair bound or some other sort of mobility issue is only a matter of time. I can last on home delivery for awhile but then the next hurdle will be my lack of being able to drive, go up and down my front steps, unable to go up and down stairs to the basement to do laundry and the list goes on and on…

This isn’t a defeatist attitude it’s just plain honesty with myself, what I’m capable of and what I’m not, there’s no changing that. I can’t drive 50 miles in each direction for a Dr. appointment in Boston and then spend the next 3-5 days recovering because my body is rebelling in pain, soreness and lack of movement.

No one wants to listen to me. No one wants to even offer a little word of encouragement. Instead, everyone seems to think their level of ‘assistance’ in your journey is to throw multiple phone numbers at you hope some ‘other’ agency can help you. Because…”That’s not something I would know about…” is everywhere you turn.

It’s so hard to bite my tongue and honestly, I’m not good at it in the least. My feelings and emotions are always always right at the surface, it’s who I am.

Today a “Social Worker” pretty much inferred, although not directly, that my situation is my fault because I live so far from Boston. Really? A neighbor just two streets over gets cab rides from here to Boston and back all the time but I’m somehow not on the same level of need? According to who? Medicare says appointments for a medical diagnosis are covered yet no one will honor those guidelines. Their response when pressed? “You can always find another Dr.”

So that’s why I can say with confidence the only way I’m going to get medical care is when my body collapses and I enter the ER feet first. It’s true and that’s that…

My father’s decline was as if I was watching my own health future. Five as in F I V E family members on my father’s side have either already died from colon cancer or are actively fighting it now. But somehow explaining to my PCP “Hey Doc, my last GI said I’m due for a colonoscopy this March and I need help with transportation.” his only reply was “I don’t approve transportation for my patients, that’s ludicrous.”

Today’s healthcare – Even when you do have Medicare and the most expensive Blue Cross supplemental plan, don’t expect anyone to offer you any form of assistance.

On the plus side Spring is coming and if this is where I meet my end, at least it’s a beautiful place to have accidently landed at this point in my life.

I’m not trying to be dark. I’m trying to be realistic given that I’m a ‘Party of One’ in life. There won’t be any long lost cousins, aunts, uncles or anyone else to help. There aren’t any friends, most still live in Boston and seem to think the phone is a foreign object for some reason. And I don’t know any neighbors in a town I literally just picked off of a zillow map that had a house I could afford.

I mean what were the other options? I could have gone the full section 8 please pay for everything will I sell all my assets…to what end? So that I’d be taking more gov resources rather than less? I decided to keep my own roof over my head, pay property & excuse taxes, water, sewer, trash, flood insurance, home insurance, care insurance, part D insurance, dental insurance, medication costs…last on the list? Food.

I did my part by not making myself a burden on a public system that doesn’t need it and instead of being supported in that choice I’m stuck in a medical gray area where you qualify for nothing.

I tried finding others in the survivor community online with mixed results. While I still want to find others that I can identify with, I don’t know that Twitter is the best tool for that scenario. Reliving trauma every day is exhausting and counter productive and that’s what Twitter does to this particular scenario.

Sure you want to support others and of course you want to listen just as you’d want to be listened to in times of need. I guess my position is that I really don’t need to see it in my feed in a very prominent and pretty constant stream. That may seem like I don’t care and that’s not it. It’s more from a self preservation perspective rather than place of judgement. We’re all valid and we’re all at various places in our recovery path.

Anywho…

Who knows what tomorrow will bring and at this point I can’t waste mental energy worrying about the what ifs or when will they call me’s anymore. It’s clear that unless you’re 65 and older on Medicare you’re basically on your own and it’s not a very comfortable place to be at all.

Digital Interfaces Aren’t User Friendly For The Sensory Challenged…

Digital Interfaces Aren’t User Friendly For The Sensory Challenged…

Digital companies tend to irk me more than usual these days. The incessant march forward in demanding more and more control over how users ‘must’ access their interface. It’s not that I’m a dinosaur or anything, I totally get it, it’s the digital age and phones and digital devices are now the default.

Okay, maybe I am a dinosaur but for very good reasons. Lol. After 20+ years in tech we’d regularly use analytics in content development. It was early on in the field but once you get a grasp of how they slice and dice the data and why you kinda get hip to the gig.

It should be common practice to use 3 email addresses at a minimum. one for banking and financial accounts. one for personal private family and friends. and one for credit card logins, loyalty cards and generally ‘spammy’ things like that.

Want to cut down on robo callers? Sign up for a Google Voice number which I think is still free. I use that one for EVERY phone number including gas, electricity etc. Never use your cell for anyone other than friends and family. And the great thing about Google Voice is you can ‘forward’ it to your cell or any number really, and it’s transparent to the caller. If they leave a voicemail you get an email transcription which is pretty nifty.

This one is a huge relief for my PTSD. The ring on my own phone can cause a jolt so I tend to keep it very low. If my cell ever got out to those robo dialers I’d be in big trouble. This one is a MUST have. So I use it as a junk caller filter and it does have some filters and blocking.

6:55 – I’m back, kitty panic attack while stuck in box crisis averted…

My PTSD and ADD have some not to obvious challenges, especially when it comes to navigating the web. It’s no secret our digital footprints leave a trail of our likes and dislikes. Data used to provide a ‘curated and personalized’ experience they say. “A more personal and authentic ‘experience'” they say.

With the pervasiveness of cookies, beacons, pixels and host of other things, tracking is part of our daily lives. There are those oblivious to its extent where it blends seamlessly without care as something to be embraced. And there are those who acknowledge and knowingly trade personal info for tailored movie choices in their digital library.

There’s also those that don’t really care about all the whizz bang flashing sliding morphing sticky nav bar fluid design shifting morphing images…sorry…that was my ADD getting distracted and forgetting which bill I was trying to pay before I timed out…

Then there’s those really super-duper over the top awesome times when out of nowhere, without any warning whatsoever…blaring unwanted video about something I could care less about jolts me out of my skin my blood pressure goes sky-high because loud noises trigger my PTSD…

Currently I have to use 4 different browsers just to get things done. Safari just bit the big one tonight. Whatever their new release had in it, it’s made thing grind to a halt. To be semi-fair I do have a zillion ad-blocking, anti-tracking, ad-guard, donottrack, disabled plugins…

In my defense I really don’t have a choice though because guess who no longer has control over their own user experience? That’s right, it’s us. In the never-ending pursuit of marketing needs on their never-ending quest for the last dollar in your pocket, it’ll get worse and worse.

It used to be the user was in charge of when they wanted to upgrade their system or browser version or whether or not they didn’t use flash and so forth. With HTML5, Flash and other technologies, it’s become a Push rather than Pull when it comes to content.

As well as my visit with Jerre was yesterday I’m just wiped from having to fight with BofA today as well as trying to pay a simple gas bill. NationalGrid was designed by a dropout from MySpace and literally blares at you. You must allow pop ups. You must allow cookies. Seriously? I mean who does that shit? It’s gotten to the point I just call companies and force them to take my payment over the phone. I blow right past the “There’s a $2.00 fee for thi..” “Yep, just make the payment please…” Click…

Because of that whole Spectre thingy I upgraded my browsers thinking it ‘might’ make things easier, silly me.

I spent hours trying to make a simple payment and it always makes me wonder how many companies actually comply with ADA Compatibility requirements. I had been working on a few projects in 2013ish and we used to actually think about these things. The model was what would works for most not what only works for phones and tablets.

All browsers are not created equal, which apps frequently call up, and most especially not on a digital device.

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