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Text of the page (random words):
warned it won t be pretty it s not really nesting but similar posted on november 1 2019 by artfulblasphemer what can i do while we wait for a phone call mostly worry but then yesterday i thought i could start really purging the guest bedroom better and more accurately known as the overflow studio so that once we are on the other side of this disaster the eldest will have a more welcoming place to stay while he is with us also once he gets on a list we will have to break his lease and his stuff is going to have to go somewhere that naturally led me to the gameroom as during the endocarditis double valve replacement i had moved a bunch of stuff in bins from said overflow studio and under the pool table where they have remained ever since at the time he still lived with his girlfriend so his household didn t have to come here now he doesn t so it does and that s a bigger order the bin full of boxes i might use to ship fiber art if sold online to the recycling costume elements from a movie that never got made the producer for whom i was working didn t even tell me they shelved it that s how professional that outfit was put in a pile for a junior costumer i know who might want them etc etc clothes sorted into bags by size and advertised for 10 a bag three are sold one is lingering it goes to the thrift store on tuesday the youngest was conveniently home skipping school yes you ll need info i get it so a our school district was hit with ransomeware so all computer related classes can t er computer at the moment so someone doesn t see it as a big deal if he skips watching hackers for the third time and b he s proudly managed to never attend an assembly and i m kind of rooting for him in this department so he got to take bins of textiles down from the closet then put them back up etc lather rinse repeat until whaddya know he went back to school i ve cut about 5 bins worth of hoarding and emptied two dressers it looks like chaos but it isn t mostly it s on the way to better things now i have to get the spouse and the youngest to move furniture tomorrow then we can swap some furniture and other boring as fuck stuff that is useful only to fill time since there s little chance the transplant team will call on a weekend otherwise i really have no choice but to give in to my brain eating anxiety and that won t do anyone any good waiting for the next thing posted on october 31 2019 by artfulblasphemer the eldest has finally been referred to uc at denver s heart transplant program now we wait for them to call and set up an appointment for evaluation ninety percent of all medical experience is comprised of waiting it s how they screen you out can you afford mentally and financially the endless waiting can you go through your daily life tethered to your phone are there any circumstances under which you would not answer the phone prepare yourself now to set down your diva cup and accept the call you can wash your phone and your hands later i m not kidding waiting also makes my mind race as i try to anticipate what will happen next and plan for something that being not a real thing yet i can t plan for thoughts i ve had since yesterday while waiting for the call 1 i have no stylish winter clothes i have hardly any unstylish winter clothes for that matter we live in southern nm am i selfish for thinking about clothes no of course not i do have to wear them right yes but i can t buy a wardrobe for heart transplant so what will i do 2 does the eldest have an appropriate coat should i buy one now should i wait until we get the call what if the call says we reject you out of hand good bye then what we ll be stuck with a coat that s what 3 what will we do all day for months in denver if he does indeed get on the list and we have to move there i can t move my studio to denver right will we rattle around a crappy apartment getting on each other s nerves for months on end 4 would it be possible to carefully pack up my entire poshmark operation and take it with us get a little uhaul and then i could keep making money and have something to do how would i unload the uhaul we neither of us can do that who would do that should my husband and younger son come up to move us in 5 if that s possible surely i could take a sewing machine just one oh but wait what about not having the serger is there any project i could complete without the serger could i take them both i would have to do this without forgetting a single thing because buying redundant supplies would be terrible what are the odds that we will find an affordable and spacious rental with studio space in denver zero they are zero you are insane 6 if i m there for months and then i go home for a week for a break what if he gets a heart while i m not there sure my mom will be there but i need to be there but i also need to take care of myself i can t just not go home for like a year or something that s totally unrealistic but i know how i felt during the endocarditis and heart valve replacement nightmare it was all i could do to leave him at night even 7 i will kill anyone who gives his worthless pos father money to travel to see him before surgery that s terrible of me what if he needs to see his worthless pos father but pay for him he s not staying with us that s for sure and he s one broke dick all the time he won t be able to get a hotel fucker if he does you know he will have stolen his mother s credit card again she has alzheimer s bastard i m mad just thinking about this why am i thinking about this 8 what about cooking will i be the mom servant cooking three meals a day for my adult child and cleaning up wtf will that look like while my family here subsists on the good restaurant across the street and we go broker and broker plus i ll have to cook low salt for the eldest my cooking is cemented with fat and salt that s the way it works we can t possibly manage without butter and salt 9 i literally have no clothes for harsh winter it s already snowing in denver for heaven s sake i have one snowboarding coat that i got on clearance in az when we visited the grand canyon during a freak spring break snowstorm i wear it once a year to a friend s solstice bonfire because it s not a fashionable party it s an outside being cold party why am i so narcissistic that i care about how i look what is wrong with me 10 why can t i stop thinking my whole life i ve been looking for the stfu switch and my brain does not have one no one has even called yet maybe i should call them will that make them mad will we get a demerit right out of the gate oh my god be quiet i am sure we won t hear from them until next week so who knows what knots i will have tied myself into by then this is all just so incredibly unforgiving hard the strangeness of very slow emergencies posted on october 28 2019 by artfulblasphemer we await a call back from the albuquerque surgeon s office to confirm that they will indeed refer the eldest to a transplant program maybe they are busily scurrying about doing just that and a phone call would slow them down so if i wait if i am a good good girl and don t bother them they will call in a day or so and all will be done you re right i really should write fairy tales shouldn t i today i took the eldest to see a new therapist as his last one has ghosted us and while if only the eldest had evidence of this i would assume that he missed a text or a call due to his add but i myself directly texted the former therapist and said he is in heart failure he needs to come in and crickets it s funny because we live in a small city will the therapist rest securely knowing there is no chance that he will ever see me again nope our paths will cross and then what excellent question i will glare at a minimum but no matter that we have a new one and he likes her and that is what we need to have happen next i have to find a prescribing psychologist we ve been rejected by two so far to help with the depression anxiety tourette s syndrome and add none of which are properly managed at the moment given the situation anyone s issues would be in a tizzy i haven t stopped itching since they diagnosed heart failure so i can only imagine what it s doing to him someone threw up in the sink in the bathroom at work today he told me last week because the only job he could find is in a horrible call center where apparently there are no boundaries i can t imagine this being all there was to his life a long series of crushing disappointments failures sadness and loneliness i know there s more but there s not a lot more and this heart failure business is too much we already did the thing where he nearly died and i had to essentially manage everything because everyone is stupid and healthcare is not interested in you surviving i already saw him immediately post valve replacement and spent that awful 10 or so days in the cardiac surgical unit we should not be here but we are in the meantime life goes on i have two sewing students my granddaughters both have softball games at 6 00 pm tonight dinner is ready i have things i want to sew and art i want to make and yet 50 of me is just waiting for the phone to ring and whatever they say if they say yes we are referring him to a transplant program and x program has accepted him or if they say no we changed our minds sorry or if they say we tried but no program would take him none of that will be any sort of reward for waiting by the phone or as it is in today s world waiting with the phone panicking because i left it in another room obsessively checking to see that i have it and the sound is on it s the slowest emergency in the world which is awful except it s also awful when things start moving along at a good clip i m back again posted on october 26 2019 by artfulblasphemer in may when i last posted i thought we were finished with the ongoing medical disaster my son had healed moved back to his place and started looking for a job as in any story there are a lot of variables at play this eldest child of mine is different and it became increasingly clear that perhaps he wasn t just a late bloomer and was going to have ongoing struggles he and his long term partner broke up and she moved away and i slowly realized that she had been covering a lot of the adulting in the relationship there was inter family drama over whether or not helping him was helping or enabling my mother criticized me for being too hard on him my daughter felt i wasn t hard enough i felt like nothing i could do was right i had him evaluated by a psychologist who found that in addition to having tourette s syndrome he s extremely depressed his add is completely unmanaged and in many ways mimicking autism and his anxiety is also very high so i had to look at this human i bought into the world and recognize that he s not late blooming he s not blooming at all he may never but things were going from bad to worse he nearly lost his place to live then finally found a job at a crappy call center it was good in that they pay higher than minimum wage and he can walk to it he doesn t and likely won t ever drive for a second things seemed to stabilize it was clear he didn t like the job who would then on september 10th the day after his 29th birthday he went to the er with chest pain and shortness of breath the hospitalist casually mentioned to us that his ekg showed some enlargement but then again i don t know what s normal for you yes i did think i am not aware of an enlarged heart being normal for anyone his cardiologist ordered an echo ecg and told him also very casually your ejection fraction is around 25 35 which is kind of low technically heart failure but don t worry you will be fine i was not there for that conversation i was there the next day when they did a trans esophageal echo tee to get a closer look at the valves that had been replaced the cardiologist again said that he was in heart failure but not a big deal and that he saw a dark area around one of the valves that concerned him he said the disk of the scans would be sent to albuquerque where the surgeon is right away for comparison if you guessed they didn t send them award yourself a shot of whatever you like most finally three weeks after he had been admitted i requested the records and overnighted them myself to the surgeon s office meanwhile the eldest was enrolled in cardiac rehab and we found out that the very hospital at which he had been admitted has a heart failure program with a dedicated nurse to whom we were not refereed during his stay because some of the doctors think we are poaching their patients if you just choked on your shot and said wtf have another shot meanwhile the surgeon s office called to say that they got the records but the surgeon was out for two weeks if you aren t going to drive anywhere anytime soon and you just said but can t someone else in a huge practice read the tests have another shot then have a glass of water we aren t done yet so there we were i was suddenly back in a major care taking role and the system was once again actively working against us it wasn t until i got the records myself that i learned that one s ejection fraction isn t expressed as a range it s a number and no surprise i guess his number is very low 25 but the cardiologist didn t want to tell us that it s so low that there is a 74 mortality rate within 3 years yeah have another drink the surgeon was supposed to be back on the 14th and i politely waited until the 17th to call the office i mentioned to the nurse i was transferred to that the eldest s mortality stats were still on their plate so they might want to be bothered about this then the surgeon called i had been told earlier in a call that you need a cardiologist for the heart failure that s not the surgeon s issue so i immediately told him i knew he wasn t the guy for the heart failure but there was the concern about the valve he said yeah i think there s a little separation at the aortic valve and it s leaking a little bit but that s a moot point now your issue is the heart failure we had no anticipation that this would happen he left with a seemingly stable healthy heart you re going to need to get him on a transplant list as soon as possible that s too big a decline in a short time to think that rehab will change it there s no way we can go in and deal with the valve his heart s too weak short version he changed the course of our lives and scared the shit out of us but at least someone leveled with us at the time we had an appointment with the cardiologist the next monday and it being thursday that seemed okay we would just ask the cardiologist on monday to make the referral i dropped this incredibly heavy news on the eldest on the way to cardiac rehab and then talked a bit with the hf nurse about what to expect monday morning the cardiologist s office called and said the cardiologist is out of town for two weeks sorry the eldest asked for another appointment and they said that novem...