I titled this blog the 3 Amigos because often Vulvar Vestibilitis, Pelvic Floor Dysfunction and Interstitial Cystitis occur together. The researchers arent really sure why. All three of these conditions get very little exposure- many physicians dont know much about them either. I have created this blog after being inspired by a fellow blogger- It is time I told my story.
Friday, January 17, 2020
letter to my former PT as i try and heal
Dear PT
there isn't a day that goes by that I don't cry ..although i only allow myself part of the day to let myself feel all my feelings and process the loss.
my medical world will never be the same.
i've honed in on all you taught me remembered most of our sessions i've medisteted and even remembered your techniques
i think you would have been proud of me advocating for myself when i was left with no use of my legs, pelvis and tspine
i directed and showed her all you did and guess what my Tspine came back on,one , my plevis evened out ..there were no words when i felt it engaged again all of our hard work brought back to life
then it was onto the next...and for that she used her training and expertise but all along i've said it's been the adductors from day one that PT did the met that botched me
it was and it is ..they are working in overdrive
this new one ...pt#4 she's afraid ..i have to assure her i can tolerate more pressure my body need more
so there we were debating the placement of a rib and i said no it needs back trust me once i feel it's out my body will not be aligned now that i do know it's been stirred up even if my pt left it ...it's now disturbed you have to put it back
she didn't want to
she did some woke on my neck but always says how tight.... you never said that you said some is just my normal tone
i hate this ...hate it why were you taken so suddenly why won't you answer her again why
i then asked for cold laser..she must have been pressed for time as she ran out to grab it
she does the cold laser never checks my alignment again i'm quick to dress and she flings off the sheets all in a rush
you never rushed me you were always calm... you were never frazzled like this you gave me peace when my body had none , hope when i had none you got me back my life
i hope one day we cross paths and can laugh at all this all these wackos that can't help they think to much aren't cautious enough
oh my pcp was shocked i was crying even more shocked at how my body looked, deep curve in my back i couldn't walk or stand or sit
he calmed me much like you would ..he said to not count you out yet and it maybe something in your contract i'm just not so sure
i don't get why you didn't reply again to PT#4
he thinks you will resurface and the truth will come out and it won't be pretty i sure hope so.
last nite i found an old email you sent after a tspine adjustment ... i used what you said in it and it helped me tremendously
the current one is clueless
i will use her until everything is back online and then i'm done and just hope maybe you will resurface
i'm also on restrictions not to walk far only on my driveway and around the house
i wish i knew what really was going in with you and if i would ever hear again it would help with my healing most of all if all they say is the truth i hope you are getting better and i hope have your own healing going on
Tuesday, January 14, 2020
Pt#4 finally replied back
she kept me hanging for way too long blew off one email and then finally replied today with some suggestions
tspine resets that i've never done before...mentioning using former PTs props
here is the going i've been prop free for years now i really only had three sessions last year if you don't count the two times i had to go back in for a disc that popped out
my tspine was good for a year we celebrated it
the tspine was our project she took me from the depths of no return when she said look at you girl your shoulders are supposed to touch the table and i was stunned i never noticed before so we slowly worked on this and it was hard work it was dedication it was me not knowing to trust the young somewhat quirky PT but it started to work like really work and then one day she says look at you your shoulders are touching and all
so now here we go again
not only that but i woke up with bad pelvic floor pain pt4 had suggestions for that but i'm not comfy with them so will hold off i sure don't need anything added
this feels wrong very wrong...there is no soothing no feeling me back in it's just words on a screen instructions as if i'm a PT
i'm not a PT of course and i wish i had seen her before i was botched
i'm in a panic crying and just wishing my pt would return and just do one more session to get me back
but i'm in denial she kept no notes i'm hurt and i'm reeling and there is no one to bring me back in ... so i remember her words last winter when i could hardly walk had to manually lift my leg out of my car
i remember me always making jokes about my body and her laughing i remember her halloween skelton that cheered me up
and her being happy at my progress
and here i am crying as i type just so beyond scared i'm stuck like this...i have to hop to walk my pelvic floor is all unregulated
and i'm in so much medical debt but if i could just get to the other side again...i think i will be ok ...in fact i know i will
i will, eat again and rest and not stay in one position take that seriously not over do it and ask for help
people are offering me all kinds of help.... rallying around me but i don't want anyone to see me like this
hopping and hobbling a damn near wreck
i'm sad ...so i did three thoracic traction like resets which are interesting i never knew i could do it..i seem to be sitting better did PT#4 just show me what she knows ?
to be honest i don't really care for her ...but i didn't like my life saver either when i met her , heck she flared me to no end , i may even have and entry about her
i even took a break from treating with her when we started ...
but she knew what she didn't release and she knows me somewhere in that mixed up mind of hers she knows me...she knows i need help but she just won't reply .... in this mist of all this is worry for her leaving with no notice set off a lot of us i would have rather she emailed us to let us know so we knew it was coming from her
11/25 at 1146am i will never forget that text ...my life was changed for ever i lost my lifesaver
Sunday, January 12, 2020
there were no chart notes being kept
i feel like this is some bad soap opera or lifetime drama at this point,
i saw the envelope in my inbox of the mail arriving that day. I zoomed in and was in disbelief, so when I opened it i was both shocked and utterly sad that they only notes i have from the PT were from 2017.
just four sessions that's all .
there was an eval from the owner where she lied and made up things about me and then lied and stated i didn't which to continue treatment which i never ever said. she also had no notes documenting my treatment that day.
she's a horrible person. I waited two months for nothing basically...just a blurb of my treatment life there in front of me
the times when i was much worse...the date gone bad etc.
now i'm worse again...when i walk my left hip pulls towards my pubic bone it's awful and i've never been like this...this is all since that pt hurt me. these people are lying pos animals ...i've had enough.
years of hard work are going down the drain right now the new PT can't get my pelvis right at all and now my t spine feels off
i can't even walk and today is a nice warm day in january i'm stuck inside because i can't push thru this pain...
i don't know why these people can't fix this shit... why my PT had such a good handle on it all...i'm losing my life.
i sent the pt one last msg begging her to help and i would pay her anything at all that the new pt can't get things back in place and i'm ducked
no reply all ignored
then going thru the records i saw an unsigned consent form and at the top it stated the care was the responsibility of the owner an not anyone that worked there meaning we were her patients so i can assume the pt has similar in hers
so i might be being made worse due to some clause in some stupid contract because this owner is pure evil
the pt never replied to the new pt either that asked further clarification this is some shit.
can't help treat one of her alleged favorite patients leaving me to suffer physically and financially all the years of hard work being ruined by idiots that got their license from a cracker jack box
all last year it was upper cervical ...now it's everything imaginable i'm really ducked
i keep praying she resurfaces somewhere ...for all i know she's working at another place ...we just don't know.
but help us ...i need help before i'm even worse off ...i don't know how someone ignores pleas for help i really don't
i didn't ask to be disguarded not like i left her ...this is so fucked up
Thursday, January 9, 2020
PT#4
disclaimer i think this one is the most understanding, empathetic ..nice and trying to help me
she isn't cheap
it's clear after today's session it's going to take time...
the former PT did reply to her right away but wasn't able to help her much...i of course knew what she meant
so there i was guiding this PT... she couldn't get the spine muscles to relax and the ribs were a challenge for her she spent half the session on my low back i have to remember these sessions are long and sitting that long isn't good either
i'm not used to having to guide someone like i don't mind telling them positions that work but it's scary when a pt can't get a rib back and i have to suggest they indirectly move it by moving something lower
like i said i think she's the best i've seen thus far , but she's not her
no one is her and that's just it
i left out if there wasn't out and frazzled an hour is way too long to be touched i'm used to in and out and feeling better
she didn't reply to the pt asking for more clarification...i know why..she used to get frustrated because they didn't know enough i have no clue how she learned all this
she probably tho is she should know ...but how can u just leave a patient that's getting worse and can't comment on my current condition when she would comment via email to me when she didn't see me
i missed her by a damn day it haunts me
i'm down $700 and still not better ... i'm worse
i didn't like how she was pressing hard on ribs to get them moved... it's scary really
i'm going to try one more email and offer to pay former PT i need my life back
i dunno i think i should have had some results tonite
i think everyone is stunned this happened it's not normal that it did
pt usually transition their care they don't up and walk out
i'm suffering and just drowning financially
tomorrow i will send another email and hope she replies
i also will search and see if i can find someone in florida away from this mess maybe the PT would talk to them if they are out of state
Saturday, January 4, 2020
we all tried but none of us heard back
we all typed up emails ... all in the back of our minds wondering what really happened
our minds couldn't comprehend what happened as our bodies struggled ..oh how we all struggled.
i've come back to this blog to vent to get this off my chest to get this all on record
i sent a somewhat mean email to her ..i guess i thought perhaps if she saw what i was going thru she would appear but the email hasn't been opened
she has indeed vanished
i'm worse and the new person hasn't replied like she always would ... i'm left to rot in pain ..i texted the office asking if i could get in sokner if there was a wait list ...last weekend they replied today nothing
i barely hanging in, urine retention can't goto the bathroom everything is stuck all the external muscles like wtf
she knew how to fix this how to mai gain it and i'm so fucked like really fucked
it's hard enough but when you finally find someone and then they vanish and you are made worse etc like wtf
so yes we all sent msgs and they all went u read...just left in an inbox like she's dead, but only she isn't
she isn't .....
there are patients like me being made worse and not knowing it ... lives being altered
and she couldn't have told me straight up on the 15th she was leaving ..she didn't she lied
i missed her by a day...i rescheduled which is the worst decision i ever made , ever
this is horrid , they all knew internally at the office and hid it like it's some twisted f up game you play with all of us
i'm mad and i'm not sure what to do who can help me and now i can't even goto the bathroom
who does this to patients ?
today i'm angry very angry ...there hasn't been a day i haven't cried since you left
it's been three months since she treated me ...my body can't hang on much longer
Wednesday, January 1, 2020
PT #4
not the way i wanted to spend NYE but they had cancellations so there i was cold winter day on a train back into the city... being that i'm now always loopy on meds just to function i had to ask people for directions ...luckily two nice women were headed in my direction to see the lights... i ended up walking past the building and once again asking for help, went into a store and they told me where i needed to go
so in i walk and up the levator i go...with a minute to spare ... i was met with soothing music and so i sat and did some deep breathing to relax and to calm myself from the mad dash from the station
the session went ok, pt agreed the other one did throw off my pelvis and it is causing me the added pain....so validation there
always trust your body always
she listened to me and said i could cry if i needed but i made it the entire hour with no tears
she did some minor work but nothing helped and i'm just not sure ... it's so expensive and i'm swimming in debt since my ot quit i hate this beyond words
she's going to try and reach out to my pt but i doubt she will even reply it's like she's basically dead
the trip back didn't go well, i had bad back pain and stopped to take pics of the lights and it was all just too much sucks so bad
i got on the train and somehow missed my stop...i must have zoned out it was insane , so the stop i got off on has this steep ass ramp and it was horrible and then i walked the wrong way and had to go back thinking maybe i could catch the next train but the next train was at 10pm... so uber it was ...thankfully a nice guy picked me up and was so empathetic , really nice guy
so that was more money
today was horrible just bad pain, my pelvic floor is a mess, the pubic bone is all jacked up
i know what needs done and just need someone to do it.... this is insane
i had a meltdown bawled my eyes out and was so angry that my PT couldn't just stay one more day to see me
it's horrid ..
so far i'm up to $490 spent since she quit
and next week is even more ,
going bankrupt for what would have been an easy fix
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