take a number where the blood just barely dried

by kaleidegirl

so much, so much. in such a short time.

i am quite suddenly scheduled for all of my tests to be listed for transplant. yesterday i was called about the right heart cath test. i’m scheduled to go in tomorrow for it. i fit the criteria to be scheduled right away. basically i’m healthy. they don’t have to deal with other underlying conditions. i am eager to get these things done and get listed but that doesn’t mean i’m not also a little nervous about some of these tests. well this one tomorrow and the one scheduled late August. tomorrow they go into my neck to get to my heart to see how well its working. i’m only mildly nervous about how aware i will be, how much i will feel and see. the other test i am very nervous about. terrified really. it is a test to see if i have a acid reflux issues that need dealing with. i will have to have a tube down my nose and left there for 24 hrs. this is normally a deal breaker for me. i seriously freak the fuck out when i have to have anything down my nose. i have been warning drs that i will fight and run as far as my busted lungs will take me if anyone tries to put a tube down my nose. i can’t fight this though. not if i want new lungs. i wish it was just the usual 15 minute version. they say you get used to the tube once it is placed and i really hope that is true. they say its the only time they will have to go down my nose. i really, really, really hope so. it is so barbaric and traumatizing for me. the rest of the tests were scheduled for me. my email just went crazy with emails to check my U of M account. so five tests in all and then nothing else according to my big binder they gave me at class. unless there are other tests unique to my case. i could be listed as soon as September.

i feel like i won’t be waiting long once listed. maybe i’m being overly optimistic but i just have this feeling. i’m so close to getting my weight down and won’t have any trouble being off the two meds i need to stop taking by the end of August. the only reason it could take that long is because i don’t know how slowly my psych dr will ween me off my anxiety med. she has already replaced my emergency dosage. i’m hoping to go down by half twice while probably starting the new emergency med in place of it. i am sure i am well enough to get through the surgery, well i will be. i’m working very hard to get healthy. i worry i am sick enough to be high on the list. though i should be much better by the time i am listed so who knows. i just have this feeling. maybe it is just wishful thinking. i would love to be breathing on my own and healthy again in time for the holidays. i’m sure it is just wishful thinking. i would have to get the call within a month or so if listed in September, in order to be recovered and living life again in time for any holidays this year. oh how lovely it will be whenever this does happen. i am confident that i will be strong enough to get through the surgery and recover well.

this is all so much and surely all so boring. do you want to hear about all the little things i’m doing to try and flatten my stomach and get my weight down and get strong? should i go on and on about my corsetting and how well that is going? i am so unremarkable. i’m too tired at night to read and i’m not better at the piano than i was when i got the lovely thing. no one is ordering dreads so i don’t have that to occupy me. unless you have ideas about things i should be making to put up for sale in my Etsy shop. any ideas? maybe i will just google some images and steal someone else’s idea. maybe i should peruse Etsy and see what is popular.

i want to get a manicure but can’t afford it. how silly is that? a fucking manicure. what am i? some kind of trophy wife left to spend her time and husbands money trying to be pretty for all the people i don’t ever see???

oh how the summertimesadness has set in. the headaches continue but sleep comes easier. tomorrow i taper down from 35mg to 30 mg of prednisone and i’m a little bit terrified that this will be a bad taper. i’m already realizing i am not quite doing as well down to 6L as i thought. i still need to slow down.

i’m so fucking whiny. i’m lucky to be alive at all.