“Accidentally on purpose…”

the attention just encourages her..

Month: June, 2016

keep having birthdays, so many birthdays…

my daughter is 21 today. well she will be at 6:45 pm.

i recently learned that she hates this picture but i love it cuz it shows how much fun she is. she will just always make you laugh without even trying.

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21.

me and my girl. these were the best baby moments…

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i should feel really old and all kinds of other things but really i just want to see her today and celebrate in whatever way i can, the fact that she exists. this is the single most important wonderful day of my life every year.

her birthday parties were the best…

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we did the birthday thing with her on Monday. dinner, gifts, cake. just the four of us. it has become family tradition to do dinner, gifts and cake (homemade) for birthdays and when she became too old for big parties at the park we started celebrating her day the same way. she requested stir-fry and strawberry shortcake. i did my best to make a cake version and she loved it. the cake making caused a lot of stress but was totally worth it. i insisted that i still see her on her actual birthday because i just couldn’t not see her today. so we made plans to get breakfast. something we used to do somewhat on the regular when my health was better. last night she says she’s been getting stuck at work til 3 or 4 am and she will probably be grumpy. i told her we could meet up later than planned and well, we are just winging it at this point. i told her it was ok if she didn’t want to go. i know how she likes and needs her sleep. i will see her today though, somehow. i have an appt with my psych dr at 1:30 so i plan to stop and see her on my way if we don’t do breakfast. even if i didn’t have the appt i would drive out there just to see her on her birthday.

today is a big fucking deal. not just because she is 21. but because it is the day my daughter came into the world and into my life and changed it forever.

there aren’t enough words for today.

i love you my darling, darling daughter. ❤

more pictures just because.

me and my Moon Pie…

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Mary and dad a long time ago…

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Mary and her “bonus” dad…seems like a long time ago

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i’d rather be putting on make up

i was going to take a break from making hair and just try to relax but i clearly need to take a break from everything else.

yesterday i didn’t really know what day it was. i kept thinking it was just a regular boring Saturday. the only difference being that it was boring because of my physical limitations not just my guy wanting to stay home. i should have said fuck it and gone out and done more when i could have. i knew it then and i regret it now. i’m not just missing out on things, i’m missing out on people. cheering them on and celebrating birthdays and going to game nights. it might be easier to be trapped behind this screen if it was new. not the same shit i’ve been doing for years now.

i need to be doing something. anything. so i will focus even more on getting healthy. working out more. making more hair to sell and spending less time and money online. i have hobbies now and i need to be enjoying them.

i need to be living.

 

well, hot and heavy, pumpkin pie, holy moly jesus christ….

ya gotta love being bipolar sometimes. ok, maybe love is a bit much but still, when you are of the rapid cycling variety you know a mood swing won’t last long and for me, i have more of the high ones than the low ones. my usual summertimesadness normally descends upon me about this time and it has started i think but i will fight it even though my usual weapons are out of reach and my woes are deeper. usually i have fun things with my daughter planned. i can’t do those things. i may not even be able to be in the water this summer. the only thing, the time i can be in the sun without the sunsickness sending me for the shade for the rest of the day. i’m not trying to be negative or pessimistic, just realistic. currently i am needing so much oxygen i need carts to carry the huge tanks i need just to go to the store. i still need it at rest and i still need it when i sleep. i usually recover my ability to breathe in room air pretty quick, at least at night. needing oxygen while sleeping kind of scares me. maybe because my cannula often slips off or away from where it should be. it doesn’t wake me and i haven’t had any too low oxygen incidents though so that’s good.

i’m diving even deeper into the diet rabbit hole. my guy did not fight me on my wish to be able to do a slim fast type diet. it may have helped that my lung dr actually suggested it as an option to deal with my weight gain due the prednisone. it really is that bad. even with what i have done so far i cannot get even one pound below 200. that is just unacceptable in so many ways. i actually had to ask my guy to buy me some sundresses because none of mine fit me. i tried to get things and sizes that will fit me ok even after i get back to a more reasonable weight. i know i’ll never be my “ideal” weight which is around 132 according to all the BMI calculations, which i normally ignore but it seems to be the way the drs look at weight esp in regard to the lung transplant. i weighed myself today, my dr wants me watching my weight daily for excess fluid retention, otherwise i would only know because of my Wii Fit routine. i finally remembered to measure myself. that is what i really pay attention to. i could lose only 5 pounds but lose inches all over and start fitting into things better. start. keyword, start. i was OK when i was in the 170-180ish range. i had decided to just stay healthy and not get higher than maybe 185 before freaking out. i wasn’t happy there and i had to fight to not obsess over losing weight. i got clothes that fit me at that size and stopped trying to get down to a size where i fit my skinny clothes. i’m lucky even now i can still shop the juniors section. i still have to upsize for things to fit properly but i can still fit into a size 15 and often still an XL. i picked out something yesterday that i would normally never wear, a strapless sundress. it is so adorable and i figure i have a strapless bra and i’m fat enough that i can keep it up and maybe it will fit just right not too tight and i won’t spill over the top. it is so cute i wish i had somewhere to go so i could wear it. that and try out the new make up i’ve gotten. finally found an affordable smokey eye palette and my guy got me this eyeliner that i have high hopes for. he sent me this video of a girl showing that you can in fact get quality make up at the drug store. this eyeliner was one of the things she showed and showed how it works and i may finally be able to get that liquid winged eyeliner look i’ve been attempting for so long now. i swear i have enough eyeliner to out last the apocalypse. once i snag that cheap version of my lime crime black i may finally have found all the right products for me. i like to find what works and stick with it.

i have somehow found myself with hobbies. i need to find time to enjoy them. used to be all i had was taking pictures and doing puzzles. i gave up on puzzles. i really really tried to learn the violin but my hands just could not do it. now i have a keyboard. a piano like keyboard. specifically the exact Yamaha keyboard i’ve been wanting since half past forever. i was really getting back to playing at first but have let it gets dusty recently and that really bugs me cuz i really wanna fucking play it. i think i will try to start working in at least 15 minutes a day right after my workout. imma set an alarm to remind me. i need to use alarms to get me back to these hobbies i now have. i think it started awhile back when i needed a creative outlet and decided to try my hand st sketching. my guy, like he always does, supplied what i needed to get started. i did it for a bit then kind of forgot about it after not having much free time or not remembering i had something more worthwhile to then be on this damn computer. i made a wedding bouquet for a friend and decided i might try my hand at making some money at it so of course my guy got me some good cutters and a nice glue gun. i have the glue gun out so i can fix my bouquet i made for our vow renewal ceremony. i may make a FB page for that but one Etsy shop is plenty and that is for my dreads, which i have really stuck with. i am actually making money at it, not much yet but i am confident i will and i get better at it every day. my guy has invested much less in this and that makes me feel quite accomplished and adulty. he has still invested in me with this but i have actually spent a good deal investing in it myself which i normally can’t really do much at all. i think the only other hobby i’ve picked up is coloring in those adult coloring books that are all the rage these days. i have enough to last until they are hard to find. i haven’t done much but i want to put these things and the sketching stuff more in sight so i will get back to it. oh, i have a music mixing program that my guy found me and i really want to spend time on that. a friend who definitely has far less free time somehow manages to put a playlist up on this site, Mixcrate, every month. this girl, she really inspires me. in so many ways. as far as this music thing, i don’t know how she does it. not just the mix but the creativity in the titles and “cover art”. i’m really happy for her that she is mysteriously able to do it. i imagine it gives her things that help her survive each day of OMG i could never handle ALL OF THAT. i had a lot of fun when i did the DJ thing even if i sucked at it most of the time. i wanna do this. and i kind of am. i’m exploring new music, bands i’ve never listened to. i’m filling a folder of songs to use and making notes of bands and songs to get. i’m gonna do these things.

i always wished i had hobbies, well now i do. i might be a little less miserable or a little less manic if i had my mind on something meaningful even if it is just learning a song on the piano or sketching a real picture or making a good mix. i know these are small things even in my world but i have to give my life more meaning, give it more life. i am trying to get on the transplant list for some working lungs and i was reminded yesterday that in order for that to happen someone else has to die. i want to be worth that, i want my life to mean enough to save at the expense of another human life. i can’t live in this inbetween. not with the way i carry guilt. i have to really live life or give up. i can’t have both. no heads AND tails. so i decided to really live. giving up just isn’t something i want to even think about. it would be incredibly selfish as hard as this is to say, i would be hurting the people i care most about. my normal opinion would be that i would not be missed or my loved ones would be better off without me but they have made it pretty clear that i am loved, wanted and even needed and that is a feeling i am still adjusting to, still processing.

i never went to the church the other day like i said i might. the longer it is put off the more it scares me so it likely may never happen and thats fine i guess. my reasons don’t exist simply on the basis of going to church. that is just a part of it that i wanted to explore. try it on, see if it really fits like i feel it might.

oh.

i’m making pies again. i can’t use the oven so i’ve been looking up no-bake pies. which is the best to be having this time of year anyway. i will be able to use the oven by the the end of summer. this is not optional. i will make this happen. the only thing that i will allow to put me in the hospital or be unable to do things is being in the hospital getting new lungs.

so that is my rambling for the day.

i’ve got an hour to do any important things that need doing. making an appt with my therapist, finding a way to wrap my daughter’s birthday gift ((holy fuck she will be 21 in a week)), any calls or other things my guy needs me to do etc etc so forth and so on.

the way that light attaches to a girl

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i FINALLY met my niece Lana. she is 3 weeks today. she is beautiful and she was all smiles and apparently i got to hear and see her first laugh. she napped on me for at least an hour i think. who knows. time stood still. i don’t know if anyone realizes how much all my nephews and now niece mean to me. i may not have known until i went almost 2 months barely seeing any of them at all. they are growing up without their Antijen because of these damn busted lungs. i’m going to get off this damn oxygen and beat this lung disease. if i have to have a transplant, fine. whatever it takes to have more years, more healthier years with my niece and nephews and hopefully soon (but i’m told not too soon) grandkids. i’m ready to be a grammy. i was before this disease caused such urgency in me to live and experience everything i could. so there i am, fat face and all not even caring because that little gorgeous face was just staring at me with her shining smart eyes.

i’m fighting my lung disease and working these busted lungs harder every day now. now especially now that i have realized i have 13 days to fit  back into my new “wedding” dress. the beautiful dress i bought a year ago for the vow renewal ceremony we had to cancel in October. we, well i’m sure it is all me. at least it was to start, wanted to make a fuss about our 10 year wedding anniversary. we had already been through s much together and his family was right there with us supporting us. we wanted to have a little even where no one had to help pay for anything or cook anything. a sort of thank you for making our wedding so great and helping us through our marriage. well, my sister in law was going to make our cake because she makes the best, most beautiful cakes but we moved things up to July instead of October and she has a prior cake making commitment, so i’m going to do my very best but cannot ever compare to her talent. i think this works out well because now no one is doing any kind of work for this. two of my other sisters in law are doing readings for us and my bestie is marrying us again. she likes marrying us. (she got ordained specifically to marry us when we got re-married). so i WILL fir into that lovely dress and even with half my head recently shaved and growing out not as awkwardly yet as i feared i will still have lovely loks. i’m fighting this fucker. FIGHT FIGHT FIGHT.

speaking of hair. i’m done with the real dreadlocks. the idea was a low maintenance style and not having to deal with extensions but it is far more work than you would think. luckily i think i didn’t get far enough that it will be hard to get out the few i have. i am wearing some extensions right now but plan to make more and have all of my hair redone and just do what i used to and have my synthetics until i feel like taking them out. i’m still growing my hair out. i’m still keeping it black.

i spent too much money during the springtimeofmycrazy and have cut myself off of internet spending. i’ve gotten a credit increase on 2 of my credit cards and my Amazon credit which i hope will help with my credit to debt ratio. it could back fire but i feel my summertimesadness creeping up on me and i don’t have much interest in buying things when i’m depressed in anyway.

my guy bought me the best black lipstick and i’m loving it. i won’t be wearing it constantly and may still grab that NYX at some point so i have a daily wear one like i do with my reds. i have 3 awesome reds thanks to xmess gifts after i purchased my uber jeffree star so with the black NYX and the deep grey NYX and my lime crime black i will have all the lipstick i need. a good dark red lipliner might be hunted down if i pick up that NYX black. i mean, i’ll be at the make up store of doom.

i’m watching my spending but i am also still saving up for my last tattoo fix up. i have one last tattoo that needs covering up so that i can honestly say i have no regrets. it is a dragon over yin-yang tattoo that i got at a tattoo party. ((it was a party where my artist at the time was doing the work)) i’m hoping it can be covered with a black rose. i’ll be calling today hoping i can get an estimate based on the size of it. he’s seen it and if the last quote he gave me was for that and something else then i may be able to afford just this cover up and then take a break on tattoos for a good while. well, i am supposed to get my Gonzo bats when my bestie gets her Gonzo tattoo. have to see if i can swing the money for that when the time comes.i have found a black rose tattoo that looks perfect for covering up what i have if he can shrink it down a bit. hopefully i can email it to him and get a more accurate quote.

and now for something completely different.

i have decided to explore the possibility of going to church. actually being baptized. things i never thought i would even think about. if you know me, i’m sure your jaw dropped, close your mouth. hell hath not frozen over. i have always considered spirituality in all its forms to be a personal thing so i feel a bit hypocritical making this known on such a public platform. i also know my daughter will likely ask yet again, “are you having a mid-life crisis?”. she may very well judge me based on my long held opinons of religiona dn christianity. i know her and i hope she knows me and does not judge me too harshly. i will not go full “insert most uber religious persons name here”. my reasons for this are not something i plan to broadcast, that is a conversation you can start up with me privately. this will not change who i am or my core beliefs in any way. if that is a requirement then i will turn on my heel and walk the fuck out of the whole thing. my guy was raised catholic. like private catholic school and all so i have told him this thing is on him. normally i would play secretary and make the calls or whatever but this is not my area of understanding. with that said i may go to the church today and see what’s what because i am skeptical that he will ever do anything toward getting us to the church on time. ((ha ha, see what i did there?)) i am not even entirely sure how he feels about this. i could ask but i wouldn’t get a genuine answer because i would have to ask very specific questions and in situations like this you don’t want robotic responses. you want a conversation. an organic conversation.

so yeah. that happened.

my phone alarm says to go do my workout. i’ve already done some exercise twice today so i hope i don’t wear myself out. i’m done 60 crunches. last few times i’ve only done 50. i’m working my arms with weights and using my floor peddler at least twice a day. that thing about fitting into that dress in 13 days? yeah, i mean business. i have it hanging in view of my desk as motivation. i will lose this fucking weight and in the process not only fit into that dress but breathe much better as well. i am sure my lungs are just having to work too hard to carry all this weight. i mean that. i’m not just announcing how fat i am. my meds put too much extra weight on me. its gotta go.

 

 

 

and she was

i’m becoming a morning person for real. last night i almost stayed up and worked on dreads in my office. was going to get out my headphones and just wait out the night until i was really tired. sleepy tired. it doesn’t take much to get physically tired. my lungs work hard to carry all this fat on me so i get tired but rarely ever sleepy. i go to bed around 9pm and usually wake up anywhere from 2 am to 4 am. technically this is probably enough sleep but is it? should i be getting more due to my illness? i don’t really mind it unless a pounding headache wakes me and the Excedrin tension headache stuff isn’t enough to take the edge off. i don’t like worrying about waking my husband. poor guy works so much. lately i don’t like that my fear of the dark has me terrified of the dark hallway i can’t avoid if i want coffee. i keep seeing creepy ghosts from haunting movies. he likes them. it amuses him that i jump and freak out and sure it is entertaining for a second but then i can’t shake it and those images literally haunt me. yeah, i’m afraid of the dark. last night he tells me i can turn on the light in my office and get on my laptop if i want. he’s letting me know i don’t have to be so carefully quiet i guess. he must realize this waking up early thing is a thing now that we have yet to fix and he must realize how not fun it is to sit in the dark waiting until he wakes up to get up and do anything.

so this morning i woke up and after a minute or so i realized my cannula was like across my fucking forehead. wearing the damn thing at night is annoying enough but when it isn’t even staying on i get real annoyed. so tonight i will see if i really am sleeping/breathing fine without it.

my phone was acting up so i didn’t get to weigh myself. i use the flashlight app to see the scale. the creepy hallway was too creepy again so i grabbed a vernors. my water bottle was nearly empty and i didn’t want to have to visit the kitchen again until it was “safe”. i headed to my office and got to work on the dreads that i am working on. it was kind of nice. i could do the backcombing without making much noise at all. by the time the husband was up i still had about 8 or so left to backcomb but i went to work steaming the others first.

when i started this whole thing with the dreads all i expected to come of it was the ability to make my own in any colors i wanted for WAY cheaper than what i was paying for the ones i had been getting. then i realized it was not only easy and cheap…it was fun. i found something i was good at that could also be a creative outlet. something i really need. all over my life are scattered pseudo failed attempts a creativity. this one is sticking and i’m actually making money at it. i’m currently working on a set of falls that are not for a customer, just something to put in my Etsy shop. i like coming up with color schemes and i like naming them. i also went a little vista print crazy but hopefully that has passed. i’ll just be needing more business cards soonish. i’m working on making enough to cover start up expenses which i actually don’t think will take very long.

the hunt for the perfect black lipstick is over. my husband is the best when it comes to these things. spoiling me and paying attention making him able to get things most guys are clueless about. for xmess he got me what has become my second favorite lipstick and yesterday ordered the same kind in the black i’ve been wanting and this stuff ain’t cheap and i already know it is kick ass quality. what’s more is that if he buys something for me to wear i know for sure that he doesn’t hate it. he’s “over” the goth thing last i knew so i worried my elder goth status might be annoying but apparently not and he seems to like being back to DJ’ing at goth night on occasion. which is awesome cuz he is really great at it. like really. so black lipstick coming today because he paid the $3 for one day shipping. its funny because $3 is more like what the stuff should cost but this stuff is way more.

there are few things i will really spend money on. lipstick. the perfect purse. my favorite, perfume, Hypnotic Poison by Dior. the only perfume i will wear. i’ll wear certain oils but i’m very picky about my perfume. i’ve been wearing this stuff so long i have a friend who says she can smell me before she sees me. random things like that. i’ve run out of perfume due to my clumsiness. i dropped the last bottle and couldn’t get the sprayer part back on properly so i filled my little travel atomizer and another my guy bought me and tried to preserve what was left but it must have evaporated. i’m down to the tiny atomizer in my purse. it should last awhile. i go a lot of places where perfume is not allowed or just rude. i should be set on lipstick for a good while. i just bought an outrageously expensive purse but it is perfection and i’ve been using the last perfect purse i bought for years. its been sewed up and lost its chains and such but it is so perfect. i had given up finding anything better. but then i did. i had to have it. oh, kind of like the really awesome hooded corset jacket i’ve been wanting since i before i knew it existed. its on Etsy and she’s got this layaway plan going on so i’m $50 away from it being paid off and started work on. she’s going to make sure it fits my fat as fuck arms.

i really have to stop buying things. imma pay off this jacket and get my daughter a kick ass gift for her 21st birthday and then i’m done till xmess time at which point i hope to have my bills under fucking control. people buy my stuff!!!! i work hard on it. it is very reasonably priced. i do custom orders.

i gotta work on letting my guy buy me things. not just him spoiling me on the regular like he does but accepting the praise in the form of $20 lipstick for how hard i am trying and working to get healthy. he said i deserve it and that was his reason and i was kind of difficult about it with all my self loathing and i need to work on that. giving compliments is hard for him and i need to appreciate them when he gives them.

i had important meaningful things to say but i’ve just babbled about shopping and whined about waking up so early.

maybe later.

maybe not.

the mourning dove sings with two broken wings

i’ve got many things on my mind.

it bothers me that i type so hard. i wish i was more light handed.

sometimes i can physically feel the fact that i’m dying. not soon but sooner than i assumed. sooner than i always took for granted. yes, yes, i know we are all dying. go invalidate someone elses feelings. move along. anyway, it is the most bizarre feeling and seems to happen quite randomly for no real reason. i thought certain songs would trigger it but then it would happen while an upbeat dance song was playing. while i’m driving. while i empty the dishwasher. in the shower thinking. the closest feeling i can compare it to is deja vu. so eerie and surreal. it is a tangible physical feeling.

the universe must think i look awful in black lipstick because trying to own the new black; by what seems to be my go to line of cosmetics, NYX, has been thwarted twice. the universe will just have to deal though because i like black lipstick. i don’t care what people might think when they see me wearing it in the grocery store or on my way to an appt. they can go suck a fuck and point that finger up their own ass. i will have that lipstick this weekend if i am not thwarted again. i’m gonna buy the damn purse i found this morning on Etsy. i will find a way. who is a materialistic vain ass bitch? this girl. yup.

yeah, more talk about make up. i had been trying for awhile now to “make up” properly. a real smokey eye, not just thick Avril style black eye shadow (a look i love btw) but it just never looks the way it should. i’ve tried the whole contouring thing but can’t find affordable cream contour palettes and the powder just doesn’t give the same effect, or maybe my face is just too fat and fucked up. so fuck it. back to what i know. my ‘blackout’ urban decay shadow and soon my ‘Alien’ NYX lipstick and some mascara, maybe some obnoxious blush once in awhile. i also have my go to blood reds. my lime crimes and my jeffree star. money well spent on that one. yeah, i spent $25 on fucking lipstick. judge me. i fucking dare you. how much did your fucking wallet cost just because of the name printed on it?? yeah, thought so.

such deep thoughts i’m full of today.

truly though the weight of my weight and fear of my illness. fear of not breathing. worry that i will run out of oxygen while out and will panic and use up oxygen reserves i simply do not have. my oxygen will drop and then i will drop. i keep getting so close to losing this weight. can i just get below 200? pretty please? the scale teases me as it slows at 199 just before stopping at 200 or 202. FUCK. i hate being fat. i hunted down some photos to hang on a gift my daughter made me and came across one from about 2003-2004 of me with Julie Benz at my first convention. i can actually see why guys liked me. i looked pretty damn good. not just thin but dare i say it…pretty. i had nice features even if just average and a nice smile, a real smile that went all the way past my cheeks to my happy eyes. you can see my long black hair pulled back and somewhat up. my husband could easily guess how many thousand bobby pins i used to achieve that look…for years. so yeah. at least i had proof that i was in fact pretty once.

my hair. oh my hair. it is becoming a real issue for me. i’ve decided to stop actually dreading my hair. if it loks up freestyle, cool. if they keep sliding out, fine. aside from some extensions i’m just gonna let the shit grow and leave it alone. having any kind of look to attempt to achieve just stresses me out. i don’t have the patience and so this journey has taught me that i need to just let nature do nature and let my hair grow. oh i will still keep it black. dye it black. cuz i won’t have my roots showing until maybe when they are ALL grey or silver. maybe until it just looks ridiculous.

will i live that long? i mean, it might take til my 80’s to really have grey hair enough to stop dying it. please god and universe give me all the years i deserve at least. if not the years i have been wanting but taking for granted.

if you are new to my blog, which you might be because for some reason my last post was all popular and shit. don’t know why. i feel i live a rather unremarkable life and i always wanted it that way i think. but if you are new and haven’t back read the right posts i will fill you in on all the macabre talk of dying. i have terminal lung disease. we owned cockatiels for about 8 years and on top of being predisposed to lung disease in general i also have  a sensitivity to bird antigens. so because of the birds i have cHP. chronic hypersensitivity pneumonitis. on top of some severe scarring. some people aren’t handling this well…no…that isn’t right. some people are dealing in ways that make me feel forgotten. denial around me making me feel quite alone in this fight. you know what? fine. pretend i’m not going to the hospital again. pretend i’ll be around to watch all the flowers bloom for years and years. prepare for me to be gone too soon. cope however you need to. i don’t want anyone to suffer this. i’m fighting like hell and i’ll take whatever support you have to give and do my mother fucking damnedest to spend as much time with you as i possibly fucking can even if you don’t treasure every moment the way i try so hard to do. every kiss, every ‘i love you’, every coffee date, every silly conversation, every trip, every dance, all of it. i don’t want anyone having regrets, not just myself. no one else. don’t regret how you cope. i’ll carry myself home without resentment or regret. i’m not afraid….most of the time.

maybe that was all too much and people will take it wrong and be hurt but that isn’t my intention. maybe i should be heavy on the backspace key. maybe i should trash this whole post. but i won’t. i am not the one. this is one of many ways that i am coping. i need to talk about this. that doesn’t mean i am expecting the worst or being negative or being pessimistic. i just need to face it. if i get too comfortable and forget that i am in fact dying much sooner than planned i will not fight so hard. it isn’t intentional. it is just what happens. when you forget where you want to be you forget how to get there. does that make sense to fucking anyone? i need to look this fucker in its dark scarred eyes and tell it i’m not ready. i also need to have a good cry once in awhile. i’m a grenade as hazel grace would say. i’m holding the pin as tightly as i can but it comes loose sometimes but i have to scramble to grip it ever more tightly for fear of upsetting anyone. i fight hurting people almost harder than i fight this thing itself.

so this must be what happens when you get used to waking up in the small hours of morning. it seems i don’t need more than 5 hours of sleep to function but maybe i do to keep my brain in check because heaven for fucking bid i have a sad or any other emotion that isn’t a bipolar mood swing. bipolar people do just have bad moods and good moods like ‘normal’ people we just never get treated like it is even possible. every snap and every laugh is blamed solely on this mental glitch. i don’t burst into tears randomly because of my broken brain. sometimes i’m just pissed at you for being a bitch. i.am.allowed.

this has been my mantra this week.

i.am.allowed.

i should reign myself in before i do go heavy on the backspace key because i.am.allowed to feel all of this and i.am.allowed. to say these things.

this is what makes us girls

yesterday was a little bit busy, a little bit crazy and a lot tiring. i hope i never have to spend over 2 hours at the optometrist again. only about a half hour of that was a desperate search for glasses i would love for a change or at least know i wouldn’t hate in a couple weeks. i could have gotten exactly what i wanted a few years ago but my husband doesn’t like the style i do. i know its my face, my eyes, my everything blah blah but i don’t want my husband hating my hair or make up or glasses etc. etc and so forth and so on. i have gotten a bit more selfish these days with the realization that life is too short to look only the way others want or expect. the bulk of the visit was dealing with my being at risk for glaucoma and needing actual medical tests to see how bad the issue may be and get a better baseline to keep an eye on it. no pun intended, i swear it just happens. apparently glaucoma is at least very easily treatable usually with just eye drops every day, esp when caught early. i’ve always miraculously had pretty healthy eyes. always bad eyesight but healthy eyes that had been improving with more regular proper corrective wear. this new development is almost definitely related to my lung disease and/or the medications for it. i wasn’t too surprised. i also have never spent so much at the optometrist in my life even after insurance but it will be well worth it. i will finally have very nice, glare free transitional lens glasses. no more “holy hell i can’t see because OMG the big ball of fire in the sky and i didn’t/couldn’t wear my contacts so i could wear my sunglasses!!” i have trial dailies that are a pretty good deal for the way i wear contacts and i still have the box of night/day ones that don’t always give me the weird visual disturbance that had me begging to be seen sooner.

almost forgot i was gonna share this awful pic of me in my soon to be new glasses….

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but wait

theres more

even though my husband had to bring me another tank, i did really well at rest on only 2L. this is kind of a big fucking deal. especially when you figure in that i have been only at 10L since i got up this morning. 12L would be better, like perfect, but my E tanks only go from 10-15, no inbetween but still. this is REAL progress. i haven’t even been able to get much of a workout in this week. i have been busy doing other things so it isn’t like i am just sitting around not trying. i worked on hair for a couple hours yesterday and did my floor peddler thing for at least 5+ minutes and last night did some weights and crunches. this big fucking gut has to go. i swear i will finally be below 200 by weekend if i keep this up.and i will. i really think the little bit of real walking i have been doing outside the house is what is really having an impact. it must play a big role if it is listed on my discharge papers as drs orders basically.

today if all continues to go well at 10L and my medical alert system shows up early enough i plan to go to SOS for my permanent handicap parking placard. i have no shame about this. when i need to conserve oxygen i need to conserve oxygen. i’m not lazy. maybe i’m sure i used to be but i  am not any more and never will be again but i also cannot run out of oxygen because of extra unnecessary walking. i hope that when i am down to a reasonable weight my lungs will not have to work so hard to carry me. i really appreciate that no one is lecturing me about trying to lose weight. i hate that shit and i hate when i do it to other people and have been really working on not doing it myself anymore. we are all entitled to do what we need to in order to feel comfortable in our skin and be able to own this space. so this trip to SOS will be a good test of handling my anxiety away from home. i plan to wait a bit after this to wander too far from town on my own unless i make some huge improvement right away but this needs to be done. i’m not trying to be stubborn. i’m not in denial about how sick i still am for lack of a better word. i just know that i need to do this if i want to even start going places with my husband and i know if i take extra tanks i will be safe. being able to sit at only 2L will save so much oxygen and these tanks will go so much longer. i am even able to lower them down to 8, 6, then 4 when just standing if fully recovered from any real exertion. i’ve gotten so much better at listening to my body and hearing it right. i don’t check my sats as often but when i do i am almost always where i expect to be based on how i feel.

so that seems to be where i am on this busted lungs journey.

another journey, something spiritual to start has become just me not fretting about my hair like crazy. i’ve put in some extensions to help the tightening of my real loks ((yes this does help with any impatience i may sometimes have, i’m human and i’m fucking bipolar which comes with a whole special kind of crazy when it comes to my hair))and i like the way my hair looks even though i have sections loose and they are clumsily attached. i feel like i can just leave it be for awhile now. i will need to redo the elastics so my hair doesn’t “eat them” as my dread friend put it but that is just maintenance. i have been wanting to see if i can spike up the growing out shaved side. might try today. if it doesn’t work yet oh well. if it looks awful, oh well. i will keep up dying my roots but that is just part of my usual regimen. waking up and looking in the mirror and liking my hair is nice because i really hate everything else i see. but i am working on this and it is not completely my fault. mr prednisone is always telling me to to EAT ALL THE FOOD and that is normal for it so i just have to fight it.

in more shallow vain news…i’m eagerly awaiting a delivery today from one of my favorite cosmetic companies. NYX. i will finally have real black lipstick. not halloween stuff, not crappy over priced manic panic, not almost black, not black eyeliner with lip balm. actual black lipstick with staying power even from what i read of reviews. now that i am done with the mask i can actually wear make up again and i am getting healthy enough to kind of go places and have a reason to bother putting it on. yeah, thats right. i’m super geeked about new make up. don’t judge me. i do what i want.

but i know that i can make it as long as someone takes me home…

i kept having trouble finishing blogs and i don’t like saving drafts and going back later. so i didn’t even try for a couple days.

my anxiety has been a huge dark cloud impeding my usual speedy recovery. even my very short, light workout routine has been difficult to keep up with and at first a bit too much to even do. i have had so much anxiety over being home alone, worrying something will happen and no one will know and no one is here to keep me safe. i didn’t even realize i had these concerns. it was my fantastic mother in law who pointed it out and also helped me get through the hardest couple of days last week. i don’t know if she realizes how much she did for me just by helping me see what the problem was and then offering all the help i needed to get through it…someone to understand and just sit with me if i needed it. i could not possibly ask for more accepting and loving in laws. (on both sides of my husbands family) almost every time i have been in need of help with even the smallest thing they have been there.

the anxiety still hangs over me but is a little lighter not just because of knowing the problem but having solutions. i have my mother in law just minutes away even if all i need is someone to sit with me to help me feel safe and we have signed me up for a home medical alert service/system. the equipment will arrive any day now and i hope it offers, i’m sure it will offer the peace of mind i need to get through my days alone at home and fight this anxiety so that i can really start recovering what little lung function i have.

i have zero, none, zilch, zip shame in the things my husband is doing to keep me safe and keep me home. i have a seat in the shower and i’m getting a “help i can’t get up” system. things normally reserved for the elderly. the guy who got me started setting up and ordering the medical system was so surprised at my age after learning why i needed this service. he also said he would keep me in his prayers for as long as he could remember my name. i’m not religious but i pass no judgement and i am even overcoming my personal resentment of it. ( that is a whole post on its own with the recent developments in my world regarding religion) i greatly appreciate people thinking of me when they pray, something they take very seriously and do with great love. so what is i am not even 40 and have to worry about falling or being unable to breathe and needing some kind of help. my pride is so low on my list of priorities. my health and safety are my very most important concerns right now.

despite my anxiety i am still making some progress. just not as much as i normally would have by now. maybe i’m wrong. my memory often betrays me. when i first came home from the hospital in October on quite a bit of oxygen than before the biopsy, it only took about two weeks to very definitely only need 6L for activity and 4L at rest. i was not just close, i was definitely there and had the OK from the dr to bump it down. this happened again and again and faster and faster. back then i was so new and learning and adjusting and not sure what to do. no idea what to expect. mid November at my first follow up i learned it was very possible, very likely that i would need less and less oxygen if i kept up what i was doing so that was a big step. i feel like my dr was pretty impressed with my progress maybe because most people brand new to this sort of thing don’t know as much as i had learned and done in that short time. he underestimated my determination to be pro-active and do my part and fight the fight even i had my days of embarrassing self pity. i did also learn that i have severe scarring and that put me in a dark place. still, i left with some hope even if it didn’t show itself right away. hope that i might not just need far less oxygen but maybe someday none at all if only for awhile, months, years, anything was possible. a lung transplant was far from needing to be even discussed at that point. clearly my dr is not so optimistic these days but it is not the end. this is me. transplant or not i will fight for every minute, every hour, every day, every week, every month and every year i can possibly get. i will see my daughter get married and be there when she becomes a mother and i will keep myself healthy so i can keep up with my grandchildren just as i have always planned due to being such a young mother. i will grow old with the love of all loves of my life and i will do it with all the strength and grace i can muster.

(bet ya never thought this depressed goth girl could be so optimistic eh? i’m full of surprises)

so my progress since the latest hotel hospital stay. i will tell you and i will show you so that you can get a much better idea of the gravity of it for me.

in the hospital i was on two different oxygen machines. one with a cannula (the thing with the prongs in your nose) at 15L, the highest the machine goes. i also had to wear a mask. a non re-breather mask turned up to 15L as well for when i got up, which gave me almost 100% oxygen but definitely the most i could get aside from being put on the uber high flow machine which i had been on and finally weened off of which would have been the next step before a ventilator. i wasn’t going to go through that again or rather, put my husband through that again. so here i was a couple weeks ago in the hospital…

 

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i had just used this neat wash your hair shower cap. i had to wear that mask because of the exertion of washing my hair even while just sitting in bed. it also really sucked that i had to brush my teeth in bed with a cup of water and basin. standing at the sink to do that became my first little goal.

this is me yesterday afternoon. i had tried wearing lipstick when i went out earlier that day but it sort of rubbed off a bit onto my mask and was eventually kind of a mess and pointless. but it felt good to have make up on otherwise.

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i started the day using the mask still and then realized i left the hospital with just the high flow cannula at 15L so why was i needing the mask? i was hindering my progress i’m sure because i was fine when i switched back to just the cannula. even if it is the high flow and i still need 12-15L for activity. I’m down to 6-8L at rest. usually 8 when i want to get up to raise it for activity. i sit at 6L when my husband is home to adjust the machines for me.

so it was, it is a big deal to have that mask off all the time, not just when i am sitting. i really hate the fat face going on but i’m fixing that. i’m getting back to a healthy weight. the very best thing? i can wear make up for real again. if that sounds shallow and vain it probably is and i don’t give a waltzing fuck. life is not long enough avoid happyness in fear of judgement.

in other news

i’m going to play my piano today. if only for a few minutes.  it sits next to me everyday collecting dust and i’ve wanted it too long and it is too beautiful to be collecting dust.

bad week, good day

i had a pretty rough week. i’m sure it wasn’t easy on my husband.

my anxiety affects my breathing pretty significantly. i know that isn’t anything surprising but it is really becoming an issue. i noticed it first in the hospital. i was just so anxious i had to turn away visitors. i couldn’t keep up. i was freaking out  and watching my numbers too much and that was psyching me out. if the monitor said i was in the low 80’s i would find myself feeling like i was. once i learned that the machine was way off, off by about 10% i realized i needed to listen to my body and not the numbers. i immediately started breathing better. anxiety was still something i had to fight but i was sure once i was home everything would get better. my anxiety, my breathing, my sleeping, my headaches…all of it. i would start recovering much faster and be down to a more manageable amount of oxygen in no time and eventually back to where i was before all of this.

well the first couple days home i did do better. the not sleeping and the headaches didn’t go away but i was showing improvement with my breathing. until Monday. then i was suddenly needing more oxygen again and then would be ok again in the evening when my husband came home. it took a few days and a wise mother-in-law to realize it was anxiety. i was afraid of being home alone and something bad happening.

thursday was the worst. i was just losing it all over the place. i was having an angry pity party and really pissed off and frustrated at myself and my lungs and the fact i still needed the damn non-re-breather mask to get up and do things. i really don’t mind the cannula. especially now that i have such a good one from this small company in CA that makes the very softest, most comfortable cannulas and a flow valve so you can control your liter flow from wherever. this cannula is so soft and comfortable i can barely feel it. i can sometimes feel the nose piece on one side rubbing just a bit on the scabbed over area caused by the other cannulas but aside from that its great. soft and comfy, stays on without being tightened all the way and i think it is not even leaving lines across my cheeks like the others do. so if i could just get to where i don’t need the mask my life would be so much better. (i know, i should be grateful it isn’t worse and i really am but i am also fucking human and very flawed) being back to just a cannula, even 24/7, would help me feel less anxious, more comfortable and i could actually wear fucking make up again. oh, and go places. needing the mask means i need too much oxygen to safely go out very far. with the mask and tank i get the highest amount of oxygen you can get outside a hospital, as far as i can tell. the tanks go from 10L to 15L with no inbetween so it will be more trial and error than usual to ween myself down. once i get down to 10L i an ween down 2L at a time and not 5. yes, it is a big difference.

so i tried to be productive and social thursday and i did OK ish most of the day but i slowly started to just kind of lose my shit. i was so pissed at all things oxygen. my anxiety. the fucking mask. my limitations. i’m pretty sure sex isn’t happening for fear of me not being able to breathe and probably how unattractive that damn mask is. i don’t cope well with anything when undersexed. it is one of the few things that will actually make me really bitchy. my husband seems to think its funny to talk like i’m your typical nagging bitch stereotype of a wife but really i’m not. i could legitimately bitch about so many things and i just don’t. i see no point. maybe it just helps him feel more normal, easier to join in the conversation. i feel like i’ve explained this before. it must bother me more than i realize that he does this. the point is, i was being a fucking whiny ass bitch and was taking all my frustration out on him. he forgave me. he always does. without holding a grudge or throwing it in my face every day for a week. because he’s wonderful. he has been especially kind, supportive and encouraging the past week or so. he will just randomly check on me. like just to make sure i’m ok. he left me a long note on the white board about how much he believes in me and loves me. there was something else that he did or said that threw me a bit but i forget now. i shouldn’t forget a single kind thing he says or does.

yesterday was better.

to give me some peace of mind and help my anxiety he let me set up a home medical monitoring service. once that is set up i can feel less worried about something bad happening while i am home alone. i focused hard yesterday on having a good day. i even got some hair work done and accidentally did some cleaning. later, after he came home from grocery shopping, we went up to rite aid and i got to be out for a little bit. you know, like a human. it was nice and helped my mood and overall outlook on things. i’m really seeing myself done with that mask soon.

we shall see.

the times it hurts just to breathe…fight fight fight Just push until it breaks

i had another rough night but i was prepared for it, well as prepared as one can be for several trips to the bathroom, a pounding headache and struggling to breathe. my busted lungs dr put me on a med yesterday for fluid retention. the whole underlying cause of the last month of hospital hell. it makes you pee. a lot. luckily it only lasts about 4 hours so i can plan around it if i leave the house while i’m taking it. it helped so much when i was in the hospital. i am hoping it will help just as much now and keep me from having this be an issue on the regular. i think it is the prednisone to blame which i am always tapering off of but this time much more slowly. my lungs just get angry if i step it down too fast or too much. the drs finally get it. i know steroids are bad long term but i can’t be done with them if i keep getting pulled back due to tapering issues, so yeah, i’m glad they finally realized i really do need a slow taper and i need to have some control over it because i know my body. if this new med Imuran works for me then it will be that much easier to be done with the prednisone. he tried Cellcept on me and my body said nope, no thank you, fuck you to that and i tried it twice. so far i don’t think i am having any real side effects from the Imuran so i really hope it works for me. if some of the annoyances going on are because of it, well they are tolerable. with any luck this med is a lot like crazy meds where side effects are just temporary most of the time anyway. usually if i can get through the first couple few weeks then things calm down and i do ok. so here’s hoping.

what i really want right now is for these awful terrible horrible headaches to stop. i have heavy stuff for them, Norco, but for many reasons i try for as long as i can to not have to resort to that. i’ll be pretty pissed if the headaches i’ve been having at home are rebounds from the hospital treating them with norco. i was pretty sure in the hospital they were caused by noise. i get like, noise sickness. yes, its a real thing i just don’t think it has a name or i just don’t know what it is. i did my best to avoid the norco there too but damn. the constant beeping and whirring and all kinds of other low level constant noise will eventually give me a horrible headache that is almost always joined by nausea. i had to unplug my fucking bed because of the noise it was making. i swear to all that is holy i am putting my skull candy uber headphones in my go bag so i can hopefully not go through that, this, again. there. they are in my bag. i asked my busted lungs dr for something else to treat my headaches not just because i try to avoid the big guns but also because the transplant team want me off the norco and my klonopin. i have no problem stopping the norco. the klonopin will be a process because my body is addicted. it just isn’t a med you can stop cold turkey and the withdrawal from it is HELL. i know this from forgetting to take it for a few days. i asked him for the next best thing in the hopes that it will work better and kick this norco rebound shit. i suppose it might be a good thing if that is what’s causing them, assuming i can make them go away. then we can stop playing the “what was new when such and such started” game and have to mess with my meds.

i need these headaches to stop. i really really do. i need to be able to not just do “stuff and things” i need to be able to exercise and with my breathing so bad and the headaches i can barely do my basic stretching floor exercises. if i can’t exercise my breathing won’t improve and well, fuck that noise. i know how to get what little lung function i have back to as good as it can be and that is exercise. i’ve been easing back into my routine slowly and i realized while catching my breath after moving from the couch to guest room that i am not doing what i need to be like i did the first time i came home with oxygen. the first time i was new to this and i was still set in my fast paced ways and really fucking determined to get my life back. now i am not so new, still learning and adapting but not new and i am much better than i was about slowing down. i am also just as determined to beat this fucker. i’m gonna be the healthiest bitch you ever saw with a pair of busted lungs. i need to be. transplant or no transplant. getting healthy and strong is my only weapon. it will also increase my chances of getting through the transplant process and recovering better than say, if they did it right now. so my little epiphany. i need to do what i did before. not just exercise and eat better. i need to push myself like i did then. not in a bad way that will backfire on me but i need to push harder each day rather than easing in so slowly and carefully. all things considered i’m fairly healthy. my body can handle a little strain and pain. all i have to do is be mindful of my breathing and watch my O2 sats. i’m not waiting until these headaches stop but i know i won’t make much progress until they do and well, i will just have to do my best. so yeah. i need to channel that stubborn as bitch i was when this all started.

in other news, though not unrelated. i really miss my kid. she’s going to be 21 in 23 days and i have rarely seen her the last couple months. she works so much and was finishing up college and is neck deep in adulting. and i have been fucking sick. so i gotta get myself back so we can have our breakfast and lunch and coffee dates again. go shopping together. she is starting to girl a bit so maybe we can hit the make up store even if all she wears is nail polish so far. she stopped by last night to bring me some stuff my sister had of mine and it was nice to see her and watch her and my cat Simon act like siblings. we are going to start having family dinners again if she can get her boyfriend on board and they can find a way to see us and his family on the regular. he’s got little sisters so i totally get that she has more fun with his family. i hope to make a game night out of these family dinners or sometimes a movie night. something. we are so damn boring.

my daughter is going to be 21.

how the ever loving fuck did that happen? surely i am mistaken and she is actually only 12 still…right?