Tag: Anxiety

i should have known better…

i should have known better…

kicked to the curb on xmas eve by my father, aunt and step mother. why ask me for help turning my world upside down only to disavow all of the hard legal work you had me do in the first place?

after doing everything in my power to get legal documents completed from 3k miles away both last year and this year i’m told “we’re all set…” “we don’t need or want your help any longer…” “oh, you can see you father if you want but only on my terms.”

all of this via text on christmas eve…

really? you all couldn’t have the maturity to treat me with enough respect to pick up the phone and call me? or better yet. why not just wait until After the holidays have passed like normal people?

because none of you are normal people and i’m done being made out to be the bad guy.

i was an idiot to believe my father and family understood that in all of the legal paperwork i had sent that the one most critical for me today was a medical directive. it didn’t have to be to ‘direct’ his care but it would have allowed me to talk to and work with his dr’s directly. when you’re talking about the kind of genetics we have, that was all i had hoped for. a possible shot at and a small glimmer of hope that by accepting him for who he is today i’d at least have some hope as to what my own future might hold medically.

today all of that was thrown out the window without a care for me…as is always the case.

i’m sure i’ll be made the bad guy again. i’ll never get a thank you or a simple “I know what you’re going through, let’s find another way to help you.” kinda stupid to expect simple things like that right?

i’m not bitter. i’m tired. i’m tired of always being the one left holding the bag. i’m tired of always being the one mentally and emotionally battered and bruised without so much as a passing thought.

i’m tired and yes i’m truly done… goodbye dad, goodbye family and goodbye to my past. i won’t remember you fondly. i won’t spend a single thought trying to piece together gauzy idealistic dreams of what my childhood should have been like. there aren’t enough positive things that can overcome the negative now, it’s all become one black sludgey slimey memory i never ever want to recall again.

my holidays will be only mine from now on. no more nervous expectations there ‘might’ be a xmas card (and there never is). no more waiting for birthday cards or any celebrations. you’ve forfeited the right to be part of my memories.

i’ll go back to erasing all of them from my memory and feelings. there’s no space for them going forward and today i’m truly a party of one on this planet. i’m hurt and lonely. sad yet relieved as well.

relieved because i can now go back to cordoning off my holidays without the intrusion of an overly ‘entitled’ family who never gives a second thought to how it may upend mine.

it’s a little before 3pm and i’ve only just received the text 6 hours ago. my body feels crummy and yet it’s depressing but i’ll battle back before the evening sets in.

light snowflakes fall outside and i need to restock the firewood for an evening watching old movies. i have a spiral ham i’m going to make along with twice baked sweet potato’s and baby peas.

someday i hope to cook for more than one, just as i always do, but tonight and tomorrow will be as they always are. spent in solitude and safety while i safely shut out the world.

Happy Birthday Linda…

Happy Birthday Linda…

I’ve been laying low trying to prepare for today. Clearing Dr. Appt’s off my calendar, dealing with my father and generally freeing up my mental space to just breathe and squeeze in a little solitude and happiness.

With my sisters birthday being December 21st it’s always been a day that I try and reserve just for myself. It’s taken a lot of work over the years to remember her in honor rather than sorrow. Smiles rather than sadness…

The story with my father still unfolds. I make no promises and there are no expectations on that front. Yes I was very low there for a bit but I seem to be regaining some forward momentum again and for that I’m grateful.

I’ve been able to make it to Boston for a few more Dr appointments each with mixed results. Mostly having to do with accepting my physical limitations when it comes to driving multiple hours in traffic. The anxiety and PTSD impacts when it comes to hours of sustained and very heightened anxiety for long periods of time are one thing. It’s also the physical toll it takes on my back, spine, hips and neck. I’m down for the count for at least 24-72 hours after one of those trips.

The good news is I’m now in a different hospital system should a particular surgery be needed. One good use of my two years away from regular healthcare was to research patient outcomes by surgery and organization which is surprisingly easy nowadays.

I was able to meet with my old therapist Karen and we’ll touch base in the New Year. It was like seeing an old friend and I’m soooo glad I don’t have to start from scratch. $36 to park might be an issue but she’s open to video conference which is just as acceptable really.

Tonight’s the night I make all kinds of Christmas cookies and get lost deep in thought and time…

Classic Christmas music, measuring, tasting and baking while humming and keeping busy in our own private little world…it was how i used to distract her from the chaos that was our mother…

Merry Christmas & Happy Birthday Linda, I miss you… Xo

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Linda’s first skateboard lesson, I was holding her up on this lime green skateboard trying to keep her from going down the hill… #CaliforniaSummer77

Emotional Rubber Bands…

Emotional Rubber Bands…

rubber bands, whiplash, herky jerky, it’s all the same when it comes to my family and it simply can’t continue like this. i have to choose not only my mental health over my family but also my physical health as well.

two years without health care is a long time when it comes to reestablishing healthcare especially when it comes to specialists. with my families history of colon and prostrate cancers, the first up was the new GI which started a cascade of #ptsd and #anxiety symptoms.

i did my homework and made sure to bring all of my medical records from the previous medical system to expedite the process and also to show that i was informed and cooperative new patient. the dr.’s extremely knowledgeable which is why i chose him so that’s a good thing. what i hadn’t planned on was the aggressive push for even more medical info when it came to my father…

these days i can relate to how my mother always had a hard time with dr’s and hospitals. it’s all the questioning even though it’s right there in black in white that’s the trigger. no one wants to recall their past when it’s riddled with land mines. it’s a friggin’ war zone and when one goes…they ALL go.

anywho… i had prepped like a good student…four color coded folders for each speciality in case he asked. the g.i. folder was the largest and had every letter, mri, sigmoid, tech notes, xray notes, pcp notes…”do you have the results of your father’s last colonoscopy?” “can you get them?” “you do have power of attorney don’t you?” “these are things you’re legally entitled to you know.” “i’m just trying to take what you provide me and turn it into science.” he says gesturing from outstretched hands at me motioning to random notes onto one sheet of paper because the medical terminal was down… really? no…are you fucking kidding me???

of course he was an hour late and i hit grid lock rush hour traffic right at five thirty, an hour and half just to get out of boston via route nine. it’d be two more hours before i was finally back home. exhausted, not angry or frustrated, just frazzled like shell shock and everything hurt. my stomach, my head, my body, just everything like a spiral…

who knew the next jolt was to hit the very next day. yep, the voicemail from my father asking for help for what i’m guessing may be his final wishes. i mean, i’m compassionate to what he’s going through, but realistic just the same. i mean, it doesn’t change what he’s done but that’s not the point. the point is moving on and still being able to live with myself.

do i have to forgive him? i already had in a way. i mean after our last parting two summers ago, i had already began to do just that, it was what it was and move on. i knew these’s dr’s would be key and i still have three more to fit in by january. oh, and it’s winter which i haven’t driven in for at least thirty years.

yeah, forgot that one. i had to learn how to drive two years ago after being able to walk, subway or taxi anywhere in the city of boston and now i have to drive just to get coffee. i’m not whining on that one, that accomplishment i feel really proud of actually. from finding a driving school to sponsor my road test to the registry for the written, i earned that one.

however…

while i was comfortable with having to make the trade off of country driving over city driving. i hadn’t anticipated the lack of quality specialists here on the cape. the largest and closest healthcare system is the one i’m trying to leave and also doesn’t have the best track record. all my neighbors do the same so i’m not alone in how most of rural mass. thinks about specialist healthcare which is kind of a shame. boston is a great teaching hub and it certainly has innovation on its side. what it does lack though is a broader network of care for all regions and especially those beyond just the greater boston area.

switching from as needed to daily medication was a huge leap for me but it’s necessary if i have to rely on a car for everything. when i lived in the city if i had to run out for coffee or a sandwich and cat food. even in the worst weather or worst of winter colds, i could usually muster a coat maybe some sunglasses winter boots and headphones for a block and a half to the corner bodega. fun little place on the edge of villa victoria called Casa Cuong, just the basics in it’s two small yet well stocked aisles… i can recall the rush of hot air from the ice cream coolers when you open the door in winter like it’s just outside my front door now.

i loved the juxtaposition of corners here in the south end. Casa Cuong with its treasure trove of goya, kix, friskies and klondike bars on one corner. venti iced coffee, turkey wrap, yogurt w/granola and peppermint bark at Starbucks on the other. total time out and back was about twenty minutes maybe thirty when dressing for winter.

nowadays twenty minutes seems like a luxury. a luxury in that it could take me twenty minutes just to get through tying my shoes and getting on some jeans and a shirt if i’m real lucky. i’m winded at just about anything so i have to stop about every fifteen minutes to sit, catch my breath, take the next incremental step and so forth.

you get the gist…

i miss the city for a lot of reasons chief among them is it was my home for my entire adult life until 2016. there’s not an inch of of it i can’t recall and that’s a huge blessing on my journey.

if there’s one thing i’ve learned while emerging from this self imposed cocoon it’s that new memories are going to be important if i’m ever going to make that final hard tack in my life that i’ve always dreamed of. the type where after a vigorous and difficult struggle through wave after wave, you’ve somehow managed turn face first into the wind and you’re no longer concerned with what’s behind you only with what’s ahead and ensuring that horizon as as clear as glass.

i can’t keep having these emotional rubber bands from a toxic family keep whipping me all over the place. it’s too much. i don’t wish him or them any ill will. i just need to focus on me before i end up not being able to care for myself.

when i think of the health issues that run in our family it’s crucial that i get through these next three to four dr. appointments, not including things like labs, colonoscopies, MRI’s etc. etc.

i always knew there’d be stress once i lined up these appointments, it’s the impact from the driving that i hadn’t planned for. toss in my father’s voicemail and that was that…face plant into bed for next five days.

it’s slow going and while i did manage to have an “up day” for thanksgiving, i am sidelined by the gritty scratchy eye thing again. that and the whole body still hurts which means the auto-immune system is in over drive and does it suck. mostly it sucks because i know i’m still a long way from any relief. psoriatic arthritis? maybe, all of the men on my father’s side have ended up in wheel chairs so there’s that… ankylosing spondylitis? that’s another maybe except with my father’s diagnosis in 2016 there is a genetic component to consider or rule out. after this many years neither is palatable but at least there’s a regimen to follow, a plan, something to hang your hat on each night and finally sleep with some peace of mind.

the mind, body and gut connection isn’t lost on me. while mindfulness, meditation and yoga can be helpful. i’m at the stage where we need to move to the next step in the process. living in thirty minute increments of effort isn’t normal for someone my age and yes that’s depressing and yes i know that doesn’t help. look up #IBS, #PA or #AS and they share many of the same symptoms including #depression and #anxiety. that’s good and bad. good in that one medication or plan could solve more than one issue. bad in that it takes all of those specialties to test and agree on who the lucky winner is.

the blinds are open again and there are plenty of leftovers lucky me. during the two days i had energy i was pushing through all of my batch cooking and stocking up the freezer with things like homemade chicken soup and stock. two staples for any gluten free and/or anti-inflammation diet. i made another roaster for thanksgiving day and i’ll throw that in the slow cooker for shredded chicken. an afternoon with the kitchenaid and foodsaver should knock out a couple 1lb bags which are perfect for quick meals.

my neighbor who’s recovering from breast cancer says she’s grateful for the up days too. we both joke about the mornings when you wake up and you just know your body isn’t going to hate you that day and you zoom through laundry, cooking, mail, a shower and collapse.

tomorrow supposed to be sunny and warmer than the past two days of single digit wind chills. the plan is to finish the leaves we all got clobbered with here in new england. one day the leaves were on all the trees and then two back to back wind storms mean everyone was buried all at once.

weather looks good? check. leaf blower batteries charged? check. your body still hates you in the morning? check check and triple check.

tomorrow after the leaves?

why i gave up facebook…

 

barricading complete…

barricading complete…

the blinds are drawn and taped, latches latched, door locks checked and triple checked, i’ve even cut the cords on the blinds so that i can’t raise them unless…well, unless…

facebook and instagram accounts have been deactivated, only twitter and this blog remain.

it’s never been this bad before so i’m in uncharted territory here. i don’t know how else to protect myself other than to keep everyone as far away from me as possible. depression and anxiety have a complete hold on me right now, perhaps it’s just another waiting game. a game i’m tired of playing…

i need to lose track of time…to not be conscious of where i am in my timeline is the safest place for me right now. it’s too painful otherwise. the holidays are usually bad enough, and this isn’t just holiday depression of course, so with my father’s recent voicemail it’s really muddied the waters.

december 21st is my sisters birthday and i still miss her. she was murdered on july 4th and my father’s birthday is groundhog’s day. every holiday was a nightmare as children for my sister and i. with my mother’s own #anxiety #agoraphobia and #ptsd challenges it made it nearly impossible to ever make it to someone house for a simple dinner. there was always a meltdown of some sort so we either never made it into the car and on our way anywhere or we’d last less than an hour before she had to go home. not just her, all of us.

birthday’s and most celebrations were forbidden, either for some manufactured reason such as “oh it’s just another day, it’s not a big deal.” to outright bans because she wanted to be a jehova’s witness. why not, the catholic church had failed her so she would follow any religion that had her attention.

it was so heartbreaking to see my sister cry during these times. not understanding why her special day was “no big deal” and to not even have christmas celebrated…i ache now just thinking of those days…

so. this is why i clear everything and everyone off the calendar from october to may. this year i thought i’d have peace but it wasn’t meant to be…

between good quality outdoor solar lights, auto sensing security lights with a video doorbell and indoor home automation lighting schedules, everything looks perfectly normal…from the outside.

it’s a reflection of me as a person i suppose. everything all nice and tidy on the outside and a crumbling quivering mess inside.

i don’t know what i’m saying other than i’m preparing for whatever form of communication i’ll get when it’s my father’s time…and it will hurt. deeper than anything i’ve ever known. not because of love but because of the loss at a chance to experience what it would have meant for a father and son bond when this time comes.

i’ll grieve now so that i’m better prepared for when the news does arrive. it’s a natural reflex when it comes to my family. never let them see you cry because they love to prey on the vulnerable. in this way i can say with safety and confidence that i don’t care to know what his final wishes were nor does anyone owe me anything. keep what you want just leave me in peace.

 

Voicemail, Novemeber 14th 9:12:16 AM

Voicemail, Novemeber 14th 9:12:16 AM

i’ll have to find a way to link the voice file but not tonight, Friday November 16th 10:14PM…

it’s exhausting passing time by measure of when the other shoe hits the floor, and it always does. this year was supposed to be a good year for the holidays. i had finally told my father how i felt about him after being kicked to the curb my entire life which was an unburdening. even his disgusting response didn’t hurt me. i was finally free and told him to stop calling me after having blocked his number from another vicious attack by him a year earlier.

i’ve known he was sick for awhile and although i initially was willing to help him with a power of attorney. he soon ruined that by a 4am phone call with accusations and other behavior a father just shouldn’t do to a son. i left him one voicemail later in the day after i had time to wake up and have some coffee and go “what the fuck just happened?”

“dad, i’m not sure why you did what you did at 4am but please be a man and pick up the phone so we can talk about this.” he never did and i blocked his number and then systematically i mentally prepared to forget him… i’d done it before, many many times before.

i was finally feeling good about gaining the upper hand on how to be a survivor of childhood sexual abuse. not by my father but by one of my maternal aunts. it was my father that was responsible for the psychological, emotional and physical abuse.

it was nice for awhile there…happy actually. i’d planned ahead for firewood for winter. i’d been working through the joint pains and using yard work as a mindfulness tool. something to distract me while i calmly sorted through the memories of my father. this time was different however. this time i wanted to forget, forget him. forget everything and rather than expend effort rationalizing and minimizing them into neat and tidy memories to be tucked away, i decided to just get rid of them entirely. to finally just move on and face all of the health issues i knew where on the horizon clear eyed, single and with some hope it just might be okay.

that i just might finally have a holiday without pain. i’d learned to live without them all these years so why not finally let myself be free of them and use the mental energy on myself instead of them. and it did work for a bit, right up until tonight.

the last time i spoke with my father he acted as those that 4am phone call never happened, as though he had nothing to apologize for. once i realized he was trying to manipulate me into just letting it go by i finally stood my ground. the words he used were those of a very ignorant and hateful human being i thought, how sad for him that must be. when his son finally tells him to never call him again because he no longer matters to him, those words were like a pathetic grasp for control, control he no longer had.

here i am in the fight of my life just trying to get through dr’s appointments i’ve waited two years to get and all i wanted was clear sailing for the holidays. newp. life had other plans. another shoe to drop.

i don’t know who or how many people will read this but i do have an honest question.

how do you respond to such a person who leaves a voicemail asking you to take care of all his affairs because he knows he’s not going to survive this ‘parkinson’s thing’? he couldn’t have cared less if i lived or died while i was living on the streets of hollywood in the late 70’s.

forced to be a male street hustler for a roof over his head and maybe a hamburger and a coke on a good day. santa monica boulevard and a bus bench near fairfax was good. it was near a carl’s jr. and it was easy to keep busy if cops were around or if no one was looking.

i’d wait for as long as i could. waving off the good looking aggressive types. couldn’t deal with the conceit or the wham bam thank you sam feeling from those. late at night i’d wait for the type that’d let you spend the night. children of trauma learn to read people really well so spotting the ‘companionship’ types was pretty easy. i’m not ashamed of any of this and i’d love to write more about it some day.

i can still recall the local gay papers when the words “gay cancer” first started appearing, everyone was scared and we were years away from learning how it was transmitted. when i say i’m lucky to be here, there are many many reasons i’m lucky to be here.

so here i am not far from what i thought was going to be a quiet and hopeful holiday season to one where i just want to smash every single solitary object i can get my hands on and not stop until my brain sees a blinding white light and my ears go deaf from nothingness…i just want it to end.

i’d say why me but those aren’t the right words… i can’t describe it other than i just want to grab him, someone, something by the ring of the collar to shake the ever loving fuck of them and scream so loud the whole world hears…

W H Y??????

i’m exhausted…i’m scared, scared of me not him. angry too, very angry. every time, without fail when there’s a time in my life when it really does need to be all about me, such as these health issues, one or both of them find some way of trickling back into my life.

my mother passed two years ago right in the middle of my having to sell my condo, uproot my entire life to relocate to another part of the state, oh and landed in the looney bin with clown boy got elected, thank goodness i was already in a place with meds…

and now this… this big pile of steaming shit called my fucked up family has to come along and try to ruin things yet again. i can’t help him. i don’t know him for fucks sake. and what i do know of him is that he’s someone i’d never, ever want to spend time with if i met him as just a person. there’s nothing there between us, there never has been.

i can’t help you old man. you used and abused me for longer than i should have allowed and now it’s time for you to go. go wherever it is that your road takes you and please please go peacefully.

please     finally     leave     me     alone     once      and      for      all.

Enough…

Enough…

For anyone new to the site I’d like to offer some insight to my Twitter and #SurvivorCulture tweet. My site needs work so you’re probably seeing a happy post about getting back to my previous therapist. Which definitely is good news…especially given the current circumstances.

My father and I tried to forge or repair some sort of relationship last year and it blew up in my face pretty badly. That’s always been the history when it comes to my father and me. When in doubt, blame the kid.

My father has an anger and mental abuse problem and he’s never owned it. I owned it for him by swallowing every single form of abuse he chose to dish out. Verbal, physical and the worst of all. Complete shut out and denial. If he didn’t want to hear something he made sure he got his way and never ever had to live with consequences.

Well. Here we are today. Him leaving me voicemail after voicemail playing the aging old man and I’m sick card. Uh uh. That’s not how life works.

The last time I saw my father was over 25 years ago. We’ve had sporadic phone contact over the years and always at my reaching out to him rather than the other way around.

My usual role as the hurt little boy wanting the love of his father has been a hard role to live through and it’s come at a great great cost. No regrets though. Truly. Because that life is no more…

The #MeToo movement came along at a time in my life when I was already trying to unravel and make sense of my childhood. What I had planned on was it accelerating my having to deal with my own childhood sexual abuse. Not only was my childhood traumatic and painful, he’s still coming from this utterly disgusting catholic altar boy silence and denial upbringing.

I’m still working through the dynamics of an older female family member having been my abuser. Not entirely sure where I’m going with this blog but I hope to get back to my photography. All of the images on the site are mine now and I still have a whole other site to convert over.

Thank you for reading and thank you for being here. ~R

 

Trying to keep positive…

Trying to keep positive…

these flare ups suck when then take me out of my routine. you know the drill. something triggers that familiar ‘un-happy’ gut feeling. not yet excruciating but you know it’s just a matter of time.

today i was finally able to run errands after being in bed for the past 3 days. the familiar dull painful and mentally distracting headache. more than that actually. eyes, forehead, ears where the psoriasis patches ache 24/7. then the joints kick in and your spine feels achey but can only be soothed temporarily and for unpredictable durations.

however…

i’m blessed to have learned the chef skills i did in my twenties and i’m blessed to have this period ranch style kitchen to spread out and feed myself. with my putting off seeing a PCP appt. at least i’ve gotten better at my diet which removes a huge variable once i do see a dr.

it’s allowed me the space and ability to experiment how to reverse, as much as i can, some of the effects once they begin. bone broth is an amazing gut recovery for instance so now i always keep shelf stable varieties on hand when i need to calm things down a bit.

with the availability of things like flax milk and flax wraps it makes it pretty easy to incorporate those omega-3’s for organic fruit smoothies, add in Garden of Life plant protein and that’s a great way  to start the day.

so… while i still try to work up to going to the dr’s i can at least reduce some anxiety that i’m eating the best i can.

the fear of the dr. thing is proving to be more challenging than i thought. i do have a G.I. dr. appt in Nov. and i know i at least need to get back to regular colonoscopies. with my families history of colon cancer that’s pretty much a non-negotiable. my fear comes with the exposing of my body and the fear and vulnerability of those feelings that trigger memories that are very terrifying for me.

while i’m grateful for the breather i have between now and November to try and prepare myself. it’s tough to find a balance between how much thought you need to give to your symptoms. diet alone isn’t allowing me to manage things now it just buys me recovery time post flare up. it’s the trigger that’s been elusive.

meaning, yes you have to pay attention to IBS but you also have to manage your anxiety and depression. i may not be able to control whatever auto-immune issue or A.S. issue is out of my control and beating me up physically, but i am able to shape how i view my situation.

today was a post flare up recovery day. let’s hope it lasts as long as my last 10 day up time window. fall’s coming and this yard work never ends. lol.

xo ~r

It’s been awhile…

It’s been awhile…

just checking in and i want to be clear when it comes to my previous therapist you asked if you could follow along and i had said yes. at the time i didn’t see the harm, in hindsight it would leave me feeling too exposed.

i’m not truly sure what made things change course so abruptly and while a full and honest explanation would be respectful i certainly won’t hold my breath. when a man discloses something as sensitive as childhood sexual abuse, it can be a very delicate balancing act i’m fully aware. if it was a subject you didn’t feel comfortable with or capable of fully embracing than i wish that had simply been said.

at any rate. please do not read or follow along. i’m not good at being a unicorn remember?

#PTSD is still part of life, the anxiety of medical and prescription transition number three has now been completed. with my exchange plan i was afraid to get routine services, with medicare and BCBS medigap i can finally start to relax a bit. Prescriptions are what they are. I think the days of $5 copays, unless it’s very generic and widely used, are starting to become a rarity. unless i’m in some deductible period or the dreaded donut hole. Egads….

mental health wise i think things are proving to have a symbiotic effect. when my body isn’t aching from every square nodule, i’m up and about and i don’t need 1/2 hour epsom salt baths to get going either.

my recent bout with #IBS, or at least that was what we ‘thought’ it might be two years ago, knocked me offline for 4 days straight. so you’re in bed in agony because you’ve been tossing and turning for 4 days and nights, your hips hurt, you feel like you can’t bend or twist enough to get down to that last itsy bitsy stetch of muscle that will finally make you say ahhhhh….it eludes you and you beg for more sleep.

my last flare up with 3-4 days of no eating and/or just bone broth really let whatever was in my system pass out of my gut so my stomach finally felt normal. with the malaise of aches pains coming and going so i dropped 10 pounds, not a bad thing, i’ll take it.

not sure if it’s the yoga and stretching i’ve been doing on the deck but the more i move the better i feel. now that i’m down to 185lbs from 220;bs i can definitely feel a difference. well, when i can move anyway.

for now i’m just keeping busy gardening which really is a good workout i have to say. whipping a 100ft garden hose around is pretty fun and great arm and shoulder work. the constant up and down around the deck helps the legs since it’s semi-uneven down to the pond level.

i’m getting better little by little. mindfulness, meditation, stretching, healthy eating and super baby steps yoga seems to be bringing a much needed rhythm and routine to things.

now. time to get my damn Nikon lens fixed, i need a trip to NYC… ~r

 

Been a heck of a week…

Been a heck of a week…

last thursday was a hit to the gut. she used all the right words. “I know that you have abandonment issues and…”

i do/don’t recall much beyond the utter collapse that i’d never be able to work with her again. we were so close and the one last thing i needed. the one last thing between being forever trapped in childhood or smashing the world to bits is still lying on a shelf in my closet…buried behind even more boxes. waiting to either ruin or free me forever. a box of photos from my mothers past i have yet to open. a part of my timeline fully suppressed, held at bay and kept at a distance until i was strong enough.

this isn’t easy work. i know that for myself the work isn’t in the graphic details either. childhood sexual abuse doesn’t need to be recalled or retold in order to be understood. when someone says to you they’ve endured things no young boy of six should ever have to that’s more than enough.

there’s no easy lead up in therapy when it comes to working with someone like me. when she offered to ‘be the one’ to help me make that final walk through, the one last and most vulnerable part. i only asked one thing. “if you promise than you have to stay to the end, you have to stay to the end.” this had been many months prior.

During our last session this past thursday she said she wouldn’t be able to see me in private practice…i lost my breath…i tried to keep it together…buy time long enough to recover…put on a brave face, we always do. that’s how people like me get through life. we pretend we’re fine until we aren’t…

i had been sobbing at this point. overwhelmed at possibly trusting someone again, the possibility of finally not being the only person carrying my story…

i don’t know where to go from here. next week begins trips to boston for the medical stuff. these random bouts of muscle weakness and joint pain is pretty disconcerting.

as for the mental health side…well. i’ve been alone most of my sober life, which will be 13 years come october. i wouldn’t trade that for anything, i do miss people though.

camera in tow with my shades and tunes. it’ll be comforting to be anonymous in bustling boston again.

Good Days, Bad Days…

Good Days, Bad Days…

Blech. I was down for the count the past three days, and hard too. I mean really really freaking hard like a mack truck hit me then backed up did it again and again and again.

The more I research Ankylosing Spondylitis (AS) the more I begin to understand ‘arthritis’ related conditions and symptoms. When my father was diagnosed last year it was another piece of the puzzle falling into place.

When my body started to go haywire about 5 years ago I was playing whack-a-mole with pain. Then it was just my shoulder and elbow randomly and relieved somewhat by cortisone and the usual OTC pain relievers.

At one point I had a trainer at Equinox who was great helping me get my core in shape, which is key for back pain and in general. We steered clear of the lower back and knees until things got stronger but not by much. We learned to work around things and I thought I was in relatively good shape physically.

I’ve had back pain all my life and just chalked it up to me being one of the unlucky ones and that I could just find a way to work around things. That worked for the most part until the pain moved from just the lower back and hips to pretty much everywhere.

On any given day I could be taken down by one specific area or every joint and muscle could rise up in revolt all at the same time. It’s day by day and the randomness is maddening.

I don’t know that I have AS mind you, I just know it runs in the family, as does many other forms of arthritis, so it seems like a prime candidate.

Night time is brutal even with good sleep practices and a tempurpedic mattress and pillows. I have 6 pillows lol. 2 tempurpedic, 2 down and 2 generic poly fill. I’ll start out all nice and comfy but come 2, 3 or 4am and the back pain is off the chart. That’s when all the tossing and turning begin and I may as well never tried to go to sleep in the first place. Hence the constant fatigue and every other system thrown totally out of whack.

In some of the research there’s a lot of overlap between GI issues as well as AS issues. My hope is that once I get back to seeing Dr’s in Boston again. Is that I can finally find a good rheumatologist to try and get to the bottom of things.

After spending the past three days in bed all I know is whatever is going on is that it totally sucks without medical support. I’m being realistic before I start getting to appt’s come August. I just need to know if the pain means my joints are at risk or am I cleared to do physical therapy or other exercise program.

Even when I do get that info I’ll still need help with the pain though and that’s worrying. With thirteen years in recovery I’m not about to be led down the opioids road that’s for sure. Yoga and stretching I can do. Exercise in the form of gardening I can do. Adding in more walking or other outings for longer duration such as photography? That’s gonna be a challenge without a clear medical support plan.

Another sucky part is when you’re stuck in bed or indoors, the last thing someone with anxiety and PTSD issues needs is to get stuck in their own head. Boo, hiss, bad, get out of the head or you’ll go nutty…trust me on this.

I’ll have to put the Complex-PTSD (CPTSD) research on the back burner for awhile. I won’t be much good to myself until I can at least take a normal walk without feeling winded and exhausted.

Not being able to walk as part of my daily life makes me miss Boston. A lot actually. I was importing some old external drives awhile back and the images from my old site brought back fond memories.

With my aversion to public transportation I’d always preferred walking and Boston is such a walkable city. The architecture and history always made walking an absolute joy.

Note to self: Send your lens to Nikon for repair you dolt, how are you going to document your journey back when it’s stuck  on 24mm?

One other lovely side effect or symptom from wither IBS or AS is trouble with vision. Today’s one of those days when a random eye will go completely out of focus regardless of eyeglasses or drops. Coupled with my right eyelid dropping down not only is walking an issue but so is my photography.

That would kinda be a crusher I think. Here I am about to launch my boat into uncharted waters, where photography is very much a part of the healing plan, and now looking through a viewfinder is further hampered.

Next week is a big week. I’ll be saying goodbye to the counseling center I’ve been going to since I first moved and which is also bittersweet. I’ve come to enjoy the drive between here and Plymouth and the back roads are an enjoyable part of that during any season. On the plus side I now know the route by heart and it’s still an easy drive to the waterfront.

The following day I have to head to Boston for an overnight at a hotel. Not sure if I’ll drive or take the commuter rail but it’s all workable. Part of the change in prescribers is due to health insurance and also to go back to the PhD. I’d been seeing for years. He knows my history best and it’s a familiar office and familiar process. It took me many many appointments to learn how to get in and out of his office without a full on panic attack.

Anxiety & PTSD make for a brutal combination when it comes to Dr. Appts. I had to plan everything down to the minute so I wouldn’t be stuck in the waiting area too long but arrive early enough just in case he wanted to see me earlier. He seemed to like doing that anyway, not that it was an expectation. Planning included how long each coffee shop took to get through the line on the way to the appt. Whether he wanted both doors opened or closed, it’s an old brownstone and has these massive double doors from the outer entry into his office.

Eventually I got the hang of things, knew where all the exits were and that sometimes the bathroom light would be out so plan ahead. Part of my situation is I need routines and part of it is making sure I can be on auto-pilot due to the early morning hours. With there only being one day a week for afternoon appointments sometimes I’d have to take a seven a.m. appointment which makes it kinda hard to be mentally nimble.

Fingers crossed by body will cooperate between now and then. Nothing fun about being bedridden with something that feels ten times worse than the flu and there’s nothing you can do about it. No position is comfortable…ever…and it’s relentless.

 

 

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