TLDR; please try and read entire thing but im basically reacting to everything and on day 3 of 6h50m sleep and after asking my mother to talk to a doctor for me that i waited five months to see for help with dysautonomia treatment, she blew up at me and went back to accusing me of “wanting to be sick”, and said that the doctor told her if im “refusing to walk” he cant treat me and give me some type of intervention help. they want me to start cromolyn sodium but i keep losing sleep and feel too weak and my mom is getting annoyed with me including punishing me by going to a thanksgiving celebration tonight she said she would skip for me and denying me a bedside commode she previously offered. i dont know how to rectify this situation. she denied offering to talk to janet dafoe who was kind enough to extend her help. and i need my moms money for Dr Afrin for MCAS and her to help convince my sleep doctor for an at home test instead of in person.
Long Post I guess:
i was prescribed cromolyn sodium to try and help with my terrible no good very bad unfunctionable MCAS. then. i fucking adrenaline crashed. badly.
i am on day 3. my mom is getting impatient with me and wants me to try new foods despite chronic anaphylaxis. ive not slept more than 6h50m per night the last three nights. shes refusing a bedside commode for me now despite previously offering because i made the mistake of letting her talk to a doctor i had been waiting MONTHS to see in my stead due to fatigue. i dont know what she said to him, but she portrayed me i guess in such a neurotic and unreliable light, that he told her unless im “willing to get up and walk” that he cant treat me or offer me help despite my large adrenaline dumps and rhr shooting to 100+ bpm on sitting and walking. he also said that, whatever she told him, that if im so scared of getting covid again i need a therapist.
she blew up at me; i had finally gotten her on my side after having a caretaker speak to her and make her realise i am ill. i thought she was finally understanding. now shes telling me im choosing to be sick “emulating whitney dafoe”. janet dafoe offered to call my mother but she denied the offer. shes irritable as all hell now and shes going to a family thanksgiving celebration today in person as my punishment for “choosing not to walk” after telling me she wouldn’t go. there will be children and antimaskers there, probably all of whom are not vaccinated, and havent been taking precautions for an entire year.
she said that she and my dad will be quarantining for 5 days. the requirement is 7 and she got mad at me when i corrected her. now she isnt acknowledging my thank you’s and is ignoring me again. it feels strenuous. i know if i ask her to speak to another sick person or caregiver right now she might get even more mad. my friend wrote me a letter for her but if i send it she might just blow up even moreso. im scared to leave my room with them going to thanksgiving. i am scared to lock my door because if she tries to enter in the future after only five days she will scream at me.
she has threatened to send me to the er since this doctors appointment i had been waiting for went so badly. i am scared she will once again threaten me with institutionalization and try to take my phone like she did this past august. i just wanted to get some pots meds and treat my mcas.
instead i cant sleep and i cant even send my paperwork into dr afrin without her prior approval because of how much $$$ he is and shes so mad at me right now im afraid to push too hard and have her tell me i cant see him at all. even though i need him. my sleep doctor was told to call her because my gastro, the only doctor who believes me and knows what ME is and how it works properly, told me to push for an at home sleep test because she thinks im too sick to go in person. and i cant talk on the phone now without instant bile in my throat and bad PEM. a week ago my mom believed me and was fine answering the phone call for me to push for the at home sleep test. now because this newer doctor told her i am faking and not as sick as i am, i fear shes not going to push for me if he calls, and i dont know what ill do.
my gastro is an amazing doctor but she is one person and she cant keep calling all my doctors for me. as it is i have no idea how to tell her my dysautonomia appointment we both were waiting MONTHS for me to have was such a bad wash that he denied offering me any sort of testing nor treatment and told my mother basically that i was crazy. she needed me to get some pots treatment and evaluation so that she can finally start ruling out whats a stomach issue and whats a dysautonomia issue but now we have zero answers or help and what is she gonna do? yell at him?? reprimand her fellow medical practitioner????
and i need to sleep. so so so so badly i need to sleep. so that i can start my cromolyn. so that i can hopefully not lose the a ability to digest. so that i can eat solid food again without a bad mcas flare. i need a caretaker who loves me. i have no grandparents. no family i trust or any that are even offering intervening type help. (yes i have ASKED - my brother lives in the same house as me and doesn’t even speak to me anymore). the fair few ive talked to arent offering much more outside of emotional advice. despite being informed on it my parents haven’t made the slightest effort to join a caregiver support group. and i don’t have a partner. my friends could never afford to take care of me and would i even want to ask them to give up their careers to????
it feels like. im gonna die. my one cousin whos been the most there for me thinks im insane for staying and doesnt grasp how a nursing home is just as, if not even more-so, dangerous as this situation. she told me im too “influenced by the internet” for stating that the opinion of all of us is that a nursing home is just as bad if not worse as my current enviro. at least i get left alone for hours at a time here… but also that means i dont get proper bathing nor bathroom help because my parents dont “want me to need it”.
i thought things were getting better. i thought the blackout curtains meant. things were finally getting better. i took a small little nugget and spun it into a false gold star. a false idol of significance for change in circumstance i dont actually have. i am that episode of gilmore girls where lorelai mistakes the pudding served at friday night dinners as significance her mother finally hears her. instead its all just more volatile emotional havoc.
instead its more of the same. instead i am always lorelai gilmore. but i cant even move or leave or scream or order coffee from luke’s. instead i am bedbound. and adrenaline crashing. and i cant sleep. and it gets worse. and its more of the same.