too many tuesday mornings

i kind of stopped blogging for a while there and i know why and i’m not ok with that. i’ve had nothing to say. when i did have something to say i didn’t want to say anything about it. it hurt too much. you know that feeling you get in your jaw and eyes when you hold back tears right as you realize they want to flow? i felt that just now just thinking about one of the things i avoided, still avoid talking about. i’m clearly not ready or maybe i’m just too sensitive. it isn’t even my grief to carry so heavily.

so i’ve had nothing to say. nothing is happening in my world, well it wasn’t. i had to stop making dreads so killing time got very difficult. sleep is a constant struggle these days so here i am awake too early with nothing to do. after my first cup of coffee and i will get back to doing my Wii Fit workout. i’ve been so pre-occupied with all this woe is me and going to rehab every day that by the time i remember that i need to be doing it i find it is too late in the day. it gets annoyed when i do my workout at very different times of day so i’m trying to establish a routine again. my weight is yo-yo-ing between 192 & 194 and i need to keep it at or below 192. honestly i just want to lose a good 20# and do my best to maintain. i’m ok ish at this weight so 170 will be fine for me. my weight will be all over the place with the holidaze and the constant dieting and going to rehab every day. i’ve messaged my transplant dr about going down on my prednisone again. i’m hoping she says yes and that helps with the weight loss and my sleep.

oh sleep. i miss sleep. i miss sleeping deeply and not waking up at 6am. that happens far too often. last night i woke up with such restless legs after i had already finally fallen asleep and i went to the couch to sleep and fell asleep right away. i’m really starting to worry that our new bed isn’t working out for me. i don’t want to sleep away from my husband every night but often that is when i sleep the best. on the couch or in the guest bed. when i do sleep well it is under circumstances i can’t recreate every night. taking norco for a bad headache late in the day and then taking my buspar (anxiety med) right before bed. starting a med that helps me sleep the first few days then gives me crippling anxiety so that i have to stop it. having a cold and being doped up on thera-flu and prescription cough medicine. i can’t do these things every night.

i keep having to call my psych dr right after what seems like a good appt, things seem good and i get scheduled a few weeks out. then BAM! no sleep or extreme side effects or something. right.after.i.see.her. i used to know my body better than this. maybe i just really wanted the topamax to work out because it did help me sleep the first few days and it did help me lose weight. quickly and easily. but. the anxiety was causing the weight loss. i can’t eat when i’m that anxious. so i feel like i can’t have sleep and lose weight.

my psych dr is trying to help me but i’m paranoid that she is going to give up on me. i’ve had a dr do that before. she was a horrible dr but still. she said she couldn’t help me and ditched me. i didn’t even know drs could do that unless you didn’t pay or missed too many appts. i like my current dr and i plan to never leave her office with out a back up plan in case things go to shit again the day after i see her. i also need to really keep track of my moods and sleep and appetite, anything that might be a red flag to deal with right away.

in addition to my brain being especially broken, i am 100% certain i have carpal tunnel in my right hand AGAIN. this is the third time. my dr. will be referring me to hand surgeon i think is his plan and the hand surgeon will likely order an EMG test to confirm and then i find out what my options are. in my experience surgery is it. i’m wearing a brace almost all the time now and still having terrible pain. i keep trying to find better ways to type this and keep having to rest my hand. sure, i could just not blog but i can’t keep not doing things. if it hurts just to drive even with my brace i’m already screwed. i’ve never had carpal tunnel get better without surgery. what super sucks is that i will be on the transplant list literally any day now. if i can even have the carpal tunnel surgery with my decreased lung function that will be at least a couple days i am on hold on the list. inactive they call it i think, i’m not sure. also, the recovery from carpal tunnel surgery is absolute hell and takes forever. i wasn’t too worried about being on hold for a couple days but then i learned i have a rare blood type that will probably make getting a set of lungs harder than i was already expecting. honestly i expect to be waiting awhile. i’m doing well. but like my rehab nurse said, what if the perfect lungs come while i’m hold recovering from this surgery?? i guess i can wait to worry about all this carpal tunnel drama until i have at least seen the surgeon.

i saw a neurologist and there is good news there. nothing wrong with my brain. my memory loss is due to my bipolar and the meds i have to take to manage it. he doesn’t want me stopping those and ending up in a home with uncontrolled mood disorder. thats what he said. he actually sees the importance of treating my mental was unexpected validation because of all the stigma surrounding mental illness. for example, my family on my mothers side basically disowned me over a ridiculous FB misunderstanding drama fest started by my niece claiming i was always negative and then my sister claiming i just needed to “decide to be happy”. i tried to explain myself so that they could understand but they just got so defensive and overly dramatic and all taking sides. it was a nightmare really. i wasn’t always negative but i guess i was in too bad a place to post all happy all the time. ever since that incident i am more careful what i post. i don’t know how “real” i am on FB anymore. i try to be but that whole thing may have permanently shaped how i choose to share myself.

on the bright side my sister on my fathers side replied to a message i sent her some time ago and it was overwhelmingly wonderful to connect with MY family. people i am related to who want to know me and can shed some light on who my father was. i will finally see a photo of him. i can already tell that he wasn’t hated or resented the way my mothers kids feel about her. basically i got stuck with the shitty side of my family all my life. now i have this whole big family of brothers and TWO sisters! so yeah, that happened. i’m trying to get all the names straight and everything and figure out how to catch up on almost 40 years, somehow. i’m fortunate to have the family i have now by marriage but there was always a sort of empty spot. especially when people asked about things you only know when you have family.

Halloween was pretty awesome. we decorated the garage and had fun handing out candy. we got a lot of compliments on the set up and it was cool to see and hear people get excited about coming to our house for candy. my anxiety acts up when we have plans. a new thing i’m noticing. it sucks and ruins my fun until i can get a drink or med in me to help with it. depending on the occasion. like doing stuff at home i go for a glass of wine. out and about i gotta pop a damn pill or two. i’m hoping, really hoping that getting back to my regular yoga workout will help with my anxiety. its fucking bad these days. i thought it would get better with stopping the topamax but only vaguely. its still bad when i have plans for anything. so yeah, the holidaze should be fun. *sigh*

i feel like all my posts are just me whining.

i found my dread falls and i’m hoping i can find a way to put my hair back enough to wear them. if not now definitely soon.

**so i just walked away from this post to have coffee with a dear friend i do not see enough. now i am home amped up with anxiety trying to calm myself. waiting for a call back from my psych dr and a referral to see a hand surgeon because i have become fairly useless due to my carpal tunnel and i’m also waiting on a referral for a sleep study.

i have more to say now but my hand hurts like hell.