#my iih probably would probably still be in the process of being detected or in the very early stages of medication

[listen-to-the-inner-walrus]

waking up at 6am on a monday morning to an email that your train has been cancelled is some ancient evil magic and i wont hear otherwise

[vtforpedro]

health update, long post - TWs in tags

I haven't made an update in a while because I am exhausted. more exhausted than I can say head is still bad. working with the new neuro and just last week he gave me the diagnosis of IIH I've been waiting for a year to happen c': because he's smart and knows everything has been ruled out and when I explain it feels like a bowling ball is sitting on the bridge of my nose during episodes and that my ears feel full, I have visual disturbances, I'm having trouble with memory/information processing, my nose pops lol that I am describing a fuck ton of pressure in my skull so I didn't have to do the lumbar puncture. wish the US would get caught up with the UK because they advise against LPs because they're DANGEROUS and doctors can use those extra years of school to make big brain decisions anyway. we're doing this thing of going up on one med at a time and over three weeks to reduce side effects because I am so sensitive to meds. going up on the med that treats the nerve pain I get from my brain being swollen from PRESSURE and pressing against the giant nerve on the side of my head lol taken three times a day so going up on dose more each week to get to the desired dose then I'll take the ~magic~ drug that is the only one prescribed to treat IIH by reducing the amount of spinal fluid surrounding your brain. really REALLY terrifies me because tons of people have to get off of it because of bad side effects and I'm already so sensitive 😭 but we're starting at a really low dose, half the usual starting dose, and also doing a three week thing to get to the desired dose if it doesn't help, he'll refer me to an IIH specialist at our big neuro hospital (my insurance might not let me see them though so I may have to go elsewhere but I was thinking why haven't they done that in the past year when he said it 🙃) and also probably a migraine specialist things are moving forward with that at least in remission from leukemia for 10 months as of last month and will be 12 in the first week of december!! my hematologist moved our appts out every six months c: so that's good. I got really lucky with it. still probably stuck in my apartment for another year because people can't get their shit together to put an end to covid. blood cancers can not only cause severe illness/death (and my labs are still abnormal even if the leukemia isn't detectable) but it could cause it to come out of remission with a vengeance so. can't be around people had to fight my apt complex just yesterday not to send maintenance in to change the fucking lightbulbs because I can't have people (who are apparently not required to wear masks anymore!!!!) who have been in countless other apts come into mine ha ha ha whole host of new GI problems tho!!!! so that's been fun. can't find a reason for it either so I'm not sure what my GI is gonna. do about it. I've had the double scope procedure, multiple abdominal ultrasounds and CT scans and now a good amount of labs with nothing that explains why I get some severe pain and constipation. haven't been constipated this entire year cause of my diet and it just started one day despite no changes. really frustrating I had a pain about a week ago so bad I could barely walk. it was low enough that I don't know if it was GI or reproductive system but it's been not great with pain saw an OBGYN yesterday for a pap smear. kinda still concerned about le lady parts but she said everything looked fine at least probably gonna get off birth control after we see how I do on the IIH med so we can determine where side effects, if any, are coming from. she said I will likely see positive benefits and both her and neuro agreed it might help my migraines weight loss has kind of stopped. right at 40lbs too. it's been so frustrating and I've tried to change up the foods I'm eating but it's just not happening. I absolutely need to lose more weight for the IIH so idk what to do. can't exercise at all. can barely move around to go to appointments and I barely make it through all the stuff I have to do after we're thinking I may need a

shower chair soon. it'll help but it also sucks that I need one at all. makes me sad, especially for the next reason! I woke up this morning to see that disability denied my claim. even after everything I gave her. I was expecting this, but still hoping for good news because of *gestures broadly* all of this, plus my neuropsych and psych both diagnosing me with severe depression and ptsd lmao so I'm kind of. really fucking down right now it could take two years before I have a hearing with a judge after appealing. I can only hope the lawyer I spoke to in april sticks to his word and takes my case on my age is working against me but I've had a history of depression/anxiety since I was 10 and started to be treated then too anyway this is getting really long. I've had so many appointments already this month and it's exhausting. it's exhausting having to deal with doctors who are as shitty as ever and it's exhausting having to come home and do covid procedure/shower and it's exhausting having to be worried about getting covid from medical professionals who are not nearly as careful as they should be I can't count how many times they've asked me or suggested I take off my masks lol this phlebotomist tried to kill me last week (I may be exaggerating) and had to get help despite my excellent veins that even while dehydrated give quick/good blood and the guy she had to call in to help told me I could take off my masks b/c that helps him with anxiety attacks I got an 'anxiety attack' because not only did she keep moving the needle in my arm over and over and over again but she gripped it so hard it was causing me 10/10 pain I CAN STILL FEEL THE BRUISE but she kept doing it after I was telling her it hurt very badly so I got super woozy and had to lie down lmao and then she missed my vein in my hand. when I had one tiny tube left out of SEVEN. he got it instantly and quickly I'm tired of these people!!!!! I'm tired of shit luck and shitty medical professionals I'm tired tired tired of it had three appts with the psychologist and it didn't work out cause he was a man in the end. but I have an intake appointment with a therapist today to get an official therapist and I'm crossing my fingers. I need an actual trauma therapist and a woman who will not likely laugh and say we need to work on my 'taste in men' like they weren't the ones to choose to abuse me my father and brother the longest??????? so lol wonderful thing to say but w/e. men being men my neuro wants an mri done in late dec/early jan and while I'm extremely...... extreeeemely......... tired of medical imaging, it'll probably be my last one unless something goes very wrong for like six months I cannot tell y'all how tired I am of all of this. they hand out labs and imaging orders like candy to likely avoid malpractice without a care or thought to the patient's time and money depression is bad right now. I'm just tired of all of this ANYWAY! even longer now I had to get a pill case cause my memory is getting so awful I will forget if I took my medicine or not within minutes of the time I need to and it's about 50/50 I think so I am either missing or doubling doses and yeah. I feel old. but it's rainbow-colored at least 😂 hope you're all doing well and staying safe. crazy world we live in and I hope it calms down eventually as far as the plague goes love you all very much. thanks for being so supportive and thank you ahead of time for any replies. I'm terrible at getting back to you all when I shouldn't be. I lack the spoons sometimes