“Accidentally on purpose…”

the attention just encourages her..

strangest twist upon your lips

lipstick!!

if you don’t wear make up or have any interest in make up you will probably want to move along.

 

this post will take me awhile. i have nearly 20 lipsticks and most of them are different brands rather than just different colors of the same. my big thing about lipstick is color and staying power. i am always in search of the best reds and the best black. i have tried a couple of the funky pastels but so far haven’t found one that looks good.

Jeffree Star

i think the very best and pricier lipsticks i have is a liquid lipstick from Jeffree Star called “Unicorn Blood”. it is a very deep red. like a rusty brick red. a friends daughter posted a link to this on FB and i had never heard of Jeffree Star and i was sure that, like many awesome things i see ads for on FB this would be one of those things i wouldn’t be able to actually find. i was wrong and it was wonderful! i had never spent so much on lipstick before but this was so good i started investing in other well known but pricey brands. i love it and therefore i only wear it very rarely. last time i wore it it went on beautifully but didn’t quite stand up to hot tea, greasy tempura shrimp and far too much sushi. it didn’t rub off the same way as others do though. i still had some good even coverage it just wasn’t as dark as when i applied it so still pretty impressive. i can safely say that i would try other shades by Jeffree star if i see one i really want.

Unicorn Blood

Lime Crime

my second favorite, one that i wear more than the Jeffree Star is Lime Crime. these are also pricey. like i said, Jeffree Star taught me that you do get what you pay for. the first one i got was a traditional stick lipstick in the shade “Glamour”. I’m not finding it on their site so it must be discontinued. the “Glamour” is one of my everyday go to’s. i came upon this while hunting for the same lipstick that Max on ‘2 Broke Girls’ wears. he lipstick game is killer! as it turns out my intel was faulty or i’m not applying it right cuz its just not what i was hoping for. but it goes on quick and easy. definitely not nearly the staying power of a liquid. it is a great shade though. a nice deep red but very red. the better quality Lime Crime is the velvetine line. I have “Red Velvet” and “Black Velvet”. the “Red Velvet” is a very true red. one of the best reds i have found so far. the “Black Velvet” is also the best black i have found, so far. it goes on smooth and easy and is a nice matte liquid which is what i like. the only draw back that i have noticed is that the velvetines dry out after a few hours. they crack so badly that you get self conscious that everyone can see how horrible it feels. you can’t, but that is how dry it gets. i think maybe using chapstick would fix this but i don’t know if that would just wear it off. these also have a sweet taste right when you start to put it on. its weird but pleasant. the velvetine line has a few other shades i like that i hope to get at some point and i’m very curious about their metallics and diamond crushers lines.

https://www.limecrime.com/en-us/categories/velvetines-liquid-matte-lipstick

NYX

one of my first more expensive black attempts was from the NYX liquid suede collection. i purchased what i thought was black but was in fact grey. it is called “Stone Fox” and i like it more than i would have thought if i’d known it was grey not black. one of my next purchases will be the black i thought i was getting which is called “Alien”. this stuff goes on nicely and evenly and has decent staying power. doesn’t hold up great against food but that kind of last is hard to find in general. i’ve tried 2 other NYX items for lips. one was the “macaron lippies”. these were my first NYX purchase and i got them quite awhile ago. this line offers some more uncommon colors, well at the time these colors were just making their way into the mainstream. i tried out 3 because i got a deal on them. the 3 shades i got  were “Earl Grey” which is a powder blue, “Black Sesame” which is a light grey and “Coconut White” which is, yep you guessed it, white. i haven’t really mastered the application of these, partly due to the colors. they don’t go on as smoothly as i would like. i gave the blue to a friend because after one try i knew i would never be able to pull it off. the sesame is closer to brown than grey so i’ll never use that again either. i keep the white around and sometimes use it to lighten a red to a pinker shade and it usually works OK for that. the last and most recent NYX lipcolor i tried is their Intense Butter Gloss. this was on clearance and my husband spotted a purple shade he thought i’d like and got it for me. (i love that he pays attention to that sort of thing, he’ll occasionally take me to Ulta and spoil me a bit). this gloss, “Black Cherry Tart” is a nice glossy purple ish shade. it reminded me that i’m not a huge fan of glossy lip colors. i like having it on hand when i need something in a purple but it has hardly any longevity and like i said, i’m just not a fan of gloss. aside from definitely getting the “Alien” (black) from the Liquid Suede line i may also get other shades. the liquid does go on nicely. i’m definitely a fan.

http://www.nyxcosmetics.com/liquid-suede-cream-lipstick/NYX_201.html?cgid=lipstick

http://www.nyxcosmetics.com/macaron-lippies/NYX_145.html?cgid=root

http://www.nyxcosmetics.com/intense-butter-gloss/NYX_175.html?cgid=lipgloss

Stila

my current new fave is my Stila in “True Red”. the color is almost perfect and it goes on like a dream and lasts a good while. i wear this when i want something nicer but quick and easy to apply. i’ve seen a girl at Sephora and at Ulta wearing this in a shade called “Rico” and i just love it. when i see something on someone that i like i just ask them where they got it. its the best way to purchase with confidence. i do this with clothes, boots, bags, whatever. if i like it i wanna know where to get it cuz i’m a big fat copying copy cat. the “Ricco” is a lovely deep brick red. it looked a lot like the jeffree star “Unicorn Blood” but i touch redder. i will be getting this today or tomorrow when i go to Ulta to return something the husband got me the other day. EDIT: i got the “Ricco” shade and tried it out yesterday. i love it. it is very similar to the “Unicorn Blood”. this also has a sort of flavor to it. again, weird but pleasant. the Stila is a bit pricey at $24 a pop. i highly recommend it though because it is well worth it in my opinion.

https://www.stilacosmetics.com/products/stay-all-day-liquid-lipstick?color=Patina+%28Dusty+Rose%29&via=560aaeae69702d72b500001d

Max Factor

my first real favorite lipstick is a Max Factor 2 step liquid. Max Factor left the US for awhile or at least left our stores. it was very sad. this lipstick i got many years ago now doesn’t even have a name on it aside from the Max Factor logo. there is also no name for the shade on it but i remember the name because it doesn’t match the actual color but describes the gloss that goes over it, “Chartreuse”.  the actual color is a lovely deep burgundy and the gloss top coat is a shimmery green. i know it sounds like a very strange combination but i really love it. i have actually purchased this a couple times from the store and then through eBay, yes eBay, because Max Factor literally disappeared from stores and i just had to have it.  the first time i bought it on eBay i was able to snag it for just a few bucks so i got 2. yes, i like this stuff that much. the last time i got it i was only able to get one because it was far more expensive. this was before i even knew about places like Lime Crime and jeffree star let alone could afford them. the very most wonderful and impressive things about this lipstick is its staying power. this stuff does not budge. i haven’t met a food yet that will touch it. i literally have to scrub this stuff, especially if i don’t have make up remover. some people don’t like that kind of staying power but i love it. this lipstick is my holy grail of lipsticks and only very rarely wear it. if you can find it, it is most definitely worth the money. i assume all the shades from this line would be just as impressive.

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L’Oreal

one of my daily lipsticks for when i’m in more of a hurry is another 2 step. L’Oreal Infallible Pro-Last in “Red”. its a very true red with a nice mild gloss top coat. the staying power is better than most and it goes on fairly quick and easy. this is one of my go to every day lipsticks.

http://www.lorealparisusa.com/products/makeup/lip-color/lipstick/infallible-pro-last-lipcolor.aspx?&shade=Red-Infallible-211

Cover Girl

my other day to day 2 step is Cover Girl Outlast All- Day lipcolor in a shade called “Eternal Flame”. it wants to be red, it really does but it has a tiny bit of a coral hue to it. it goes on easily enough and has decent staying power but i don’t wear it often because of the color. if i wasn’t so obsessed with the hunt for the perfect red i might like this brand in a different shade, maybe a burgundy. it does look like the shade “Ever Red-dy” might be closer to my preference. not bad quality for the price.

https://www.covergirl.com/beauty-products/lip-makeup/lipstick/long-lasting-lip-color-outlast-all-day#:javascript

Absolute New York

recently i purchased some make up from a site recommended by a YouTube review. one of the things i got was the Velvet Lippie by Absolute New York. i got 2 shades; “Razzle” and “Fatale”. the “Razzle is a rose color and was pretty well pigmented and went on smoothly. the “Fatale” though was not true to color and didn’t go one very evenly. i had to apply a few layers to get close to the red that it should be. it is possible that it is maybe old and expired product but i don’t know how to be sure of that. i don’t really recommend this brand but i will still use the “Razzle” because it goes well with one of my favorite eyeshadows.

http://www.absolutenewyork.com/index.php/makeup/velvet-lippie.html

Revlon

the pink that i have on hand until i see something better to invest in is Revlon Color Stay Ultimate Suede. the shade is called “Muse”. this works fine in a pinch but doesn’t last as long as i would like and isn’t as well pigmented. it is a light pink. so if you are looking for a quick easy to use light pink then this will do the job.

http://www.revlon.com/products/lips/lip-color/revlon-colorstay-ultimate-suede#309978392057||0

Sephora

i have a couple of Sephora lipstick products that i’ve been trying out. a friend is on some magical mailing list somewhere that causes her to recieve tons of make up samples from various companies. one of these is a cream lip stain, the shade is just a number “01” but the site says that number is “Always Red”, it is a very nice true red. it goes on easily and evenly. i will definately be purchasing the full size version of this at some point. its not high priority but a definite must have. the other Sephora product i’m trying out is a gel gloss. it is very shiny and very moist. as i’ve said, i’m not a fan of gloss but i may try adding this to the Revlon pink that i have as this is nice pink color called “Pin Up Pink”. i’m not overly hopeful that this will be a winner for me in any way.

http://www.sephora.com/cream-lip-stain-P281411?skuId=1296060&icid2=products%20grid%3Ap281411

http://www.sephora.com/ultra-shine-lip-gloss-P266811?skuId=1636588&icid2=products%20grid%3Ap266811

Rimmel

my most used every day lipstick is Rimmel Kate lipstick in a shade with just a number, 01. it is a nice red. not too bright and not too dark. this is one of my main go to’s because i can throw it on quickly and easily and for going out to run errands it stays put well enough. its not smudge proof but does hold on OK with a little powder to set it. a little trick i learned from i have no idea. you blot with a tissue then pat with powder over the tissue. maybe everyone already does this. i don’t know.

https://www.walmart.com/ip/Rimmel-London-Lasting-Finish-By-Kate-Lipstick-001/21779179

Urban Decay

i’ve only tried one Urban Decay lipstick. my friend who gets ‘all of the samples’ gave it to me. its a dark purple-ish black called “Matte Blackmail”. it is part of the Matte Revolution line. i have only tried it a couple times, i keep wanting it to be a quick dark color for when i’m in a rush but it just doesn’t glide on the way it should. it is creamy but thick. i definitely suggest using lip liner with this but black hasn’t worked well despite how dark this color is.

MAC

this is a failed black. creamy but thick and cakey. just no. maybe this is why it isn’t available on their website.

Wet n Wild

another deep deep purple called “Vamp It Up”. basically a cheaper version of the Urban Decay. it goes on a tiny bit easier to the shape of it but otherwise they same thick cakey creamy nope nope nope.

http://www.wetnwildbeauty.com/lips/lip-color/megalast-lip-color.html#sm.001j65nie19ivctzzty1m64z03zld

Ulta

last of all, what appears to be just a very basic lipstick. the shade i have is a nice mauve/wine color and i like this for a quick everyday look when i don’t want to wear red. it smooth and goes on nicely and is moisturizing but not glossy. a nice lipstick for the price.

http://www.ulta.com/lipstick?productId=xlsImpprod3570083#

so that is my collection. i’m still on the hunt for a decent every day black and i’d like to have a nice pink on hand because i have developed a love of all things pink. ok, not ALL things but definitely more than i used to.

have you tried any of these? are you wondering anything about any of these that i didn’t touch on? what are your favorites?

 

 

 

so just pull on your face, just pull on your feet

my first make up review post. because recently i have gotten very into make up. i’ve been having a lot of fun with it, getting better at certain aspects and learning a lot of new things. it has basically become a new hobby so i have started really expanding my arsenal of make up.

i know today is a dark day for all of us and i want to recognize that but i also need to not think about it because it quite literally makes me cry. so i’m doing this.

today is eye shadow.

for awhile now i have been using Urban Decay ‘BLACKOUT’. i love it. very pigmented which i found hard to find in a black shadow. it has been my go to ever since i found it. up until recently i always did a very basic smokey eye kind of look and this shadow works great for that. my second favorite is also Urban Decay. it is part of their ‘Moondust” line and it is ‘MOONSPOON”. a basic silver glittery shade. it can be subtle or more dramatic the more you layer it. i had high hopes for this due to knowing the high quality Urban Decay offers and it definitely delivers. the first glitter shadow i tried was Wet n Wild ColorIcon in ‘SPIKED’ and it was sticky and i had to really layer and layer to get the desired effect and honestly never really did. it is just so sticky that most of it stays on the brush. the last Urban Decay shadow i have was given to me by a friend who somehow magically for no known reason receives make up samples constantly. it is a neutral somewhat shimmery shade. i found it works well for blending when you want a more natural blend. it looks like it could be one of the shades in their Naked palettes.

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its not a great pic but this is what i did yesterday with the above shades. the lips were tricky and not as good as i had hoped. the black lipstick i used was ‘elf’ and i love ‘elf’ as much as the next girl but this black was just awful. think Halloween store awful.it even broke while i was using it and i had only used it a couple times. i wanted a glittery black lip so i used a small brush and gently applied the UD ‘MOONSPOON’ and it worked OK. i plan to try again with better quality black lipstick. i’ll be doing a lipstick review post soon. also glitters or as my bestie calls it, “stripper dust”. i’m awaiting more hardcore glitters. the UD ‘moonspoon’ is just not as obnoxious as i’m wanting.

 

the next two were purchased at http://www.ikatehouse.com/ based on a review video on YouTube about surprisingly good quality make up for cheap and i was not disappointed. i got an eye shadow palette and 2 individual shadows. the palette is made by BeautyTreats and has an equal amount of natural shades and bright colors.  i’ve only gotten into it once but the two colors i used were great. i did a pink sparkly look and the pink went on great. well pigmented, looked just as expected. the individual shadows i got were made by City Color. one is a shimmery deep grey called ‘Oh so Naughty’. i LOVE this stuff and sadly i accidentally dropped it today but i’m hoping i can still get full use of it. anyway. it is a real smooth multi faceted shimmery shadow. i’ve used it alone and with black for a shimmery smokey eye. the other City Color shade i got was a more matte shade called ‘Girls Night’. its a sort of rosy color and looks nice for a subtle splash of color. i definitely recommend trying out City Colors for in expensive high quality shadow. i don’t seem to have any pics of these. i need to find a better way to get good pics of my eye shadow fun.

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the most daring shade i have ever worn is the Manic Panic ‘VAMPIRE RED’. my husband got me this off my amazonwishlist and until i used it i had no idea how much i truly needed this in my life. i don’t know how often i will be bold enough to wear it. i might get hooked on it as i perfect using it. it goes on smoothly and is nice a deep red just like you would hope upon seeing it. the packaging is cute too.

20170120_102236

20170105_151247

again, not a great pic. i’m working on it, i promise.

the last shadow is a small smokey eye palette with the best name ever. its another Wet n Wild Coloricon called ‘Don’t Steal My Thunder’. for the price it works pretty well. i mostly used it for the white and silver. the black, like so many, is just not dark enough.

20170120_102325

so there you go. my little opinion on these make ups i have. my husband is the awesome guy that bought all of these for me. i think he likes it when i find something to do with myself. also, he just spoils me in general. i do my best to not take his awesomeness for granted. that poor guy listens to me ramble about make up like a champ!

what do you use? what are your faves? please share!

 

“End the Diagnosis Era”

this woman is an insanely talented writer. i’m trying to boost this post because i think it is a very important perspective and could really benefit so many people struggling on a day to day basis with mental illness and the consequences of medication.

https://wordpress.com/read/feeds/1376639/posts/1295391979

Kayla's Welfare

Is it introvert vs. extrovert, or empath vs. narcissist?

Are you depressed, or does the oversaturation of tragedy you are exposed to every day of your life make you overwhelmed with sadness because you have a heart?

Do you have anxiety, or do you get so nervous you freak out because things get potentially weird quickly?

Are you paranoid, or are are you aware of the fact that you live in a dangerous world and you should always be alert to protecting yourself; especially if you are a female?

I rarely hear a person say, “This is my weakness. I have to try harder than most others to do this.”

I mostly hear, “I have/am (insert label or diagnosis here). I can’t do that.”

Will I make my daughter with Cerebral Palsy in her legs join a kickball team? No, that would be ludicrous. But will I ever tell her…

View original post 940 more words

i take it all for granted even though i know so much better but it takes a strength i haven’t found

i wish i was sleeping better but i’m hesitant to complain. a few weeks ago i was struggling so hard to sleep that i couldn’t lay still in bed and i was “waking up” in a debilitating panic. the only way i found myself able to get through the day was to mindlessly surf the internet in an attempt to not just distract myself but to somehow get through each day. i tried to do other things but i never learned to have hobbies and it is difficult to focus on one thing. that is why the internet is such a good way to cope for me. i bounce from one thing to another not needing to really settle into one thing. distraction is my best defense.

sleep is my escape and i really need to escape. i keep hoping sleep will be more like sleep once we get this Seroquel dose to that sweet spot where it works but doesn’t work so well that taking it is worse than not. i’m seeing the transplant psychiatrist on the 17th, less than a week from now. the pressure is on to make the most of this appointment. i have this bad habit of not really being prepared. going in fairly clueless about how to explain how things are. i leave remembering things i meant to say, realizing things i hadn’t until i was asked and of course when asked i had no idea how to answer. i basically leave psychiatric appointments needing to go right back in because of all the things that are suddenly so important, but i can’t, i have to sit on these things and deal with them best i can for weeks at a time. so in an effort to be prepared for an appointment almost 2 hours away, an appointment that will decide if my status on the transplant list will be active again, i am trying to make mental notes and i’m paying attention to my medication and my sleep and experimenting with what works best. i’m on a self run medication roller coaster with this Seroquel.  i should be taking actual notes, on paper.

so i wrote some stuff down. i hate when i know i should do something like that and just…well don’t. for no good reason. like i should use moisturizer every day and have plenty of good quality stuff that my skin just loves but until recently i was just lazy as fuck. i’m working on taking better care of myself more fully. eating healthy, drinking more water, exercising, caring for my skin. these things that should be part of my daily life and routine since forever but are just becoming things that i do only recently.

on the topic of doing things that are good for me i have found myself a couple of hobbies. things that do require some money but not for the purpose of making money so less pressure to be good at them. i’ve always been into make up and hair, typical girling things but have recently found that i can have fun doing these things even if i have no where to go. putting on make up was always a thing i did to feel less hideous when going out into the world. the more people i would see, the more effort i put in and i don’t mind the effort, it is fun. really. i have a friend who leaves the house even less than i do but spends far more on make up and has fun with it just because. when i do see her she has fun eye make up and colorful nails going on. my husband got me the fantastic red eye shadow i had on my amazonwishlist and i wanted to wear it properly so i watched some tutorials and tried it out and thus a hobby was born. i still need to work on getting good pics of these looks i am practicing. another friend does something i like to do but never let myself really get into because for as vain and exhibitionist i am, i am equally self conscious. she has fun with self portraits. she takes great photos and shows off a fun creative personality. i am hoping i can channel my meager photography skills to have fun getting good pics of this make up shenanigans.

so yeah, i’m putting on make up every day just for the fucking fuck of it.

another fun thing i am doing is mixing music and uploading mixes online for all the world to listen to and probably cringe at. well i have only successfully made one. it was a practice thing. a way to see how the recording and uploading aspect works. i will practice more while i curate a couple mixes i have rolling around in my head. i have wanted to do this for awhile and even attempted it about a year ago. that is when my husband said he gave me the program i am using. i struggled so hard to use the computer mixer which is not as easy as an actual mixer. i still haven’t figured out how, if it is even possible, to adjust the crossfader setting. that alone infuriates the ever loving fuck out of me. i struggle bussed so hard a year ago that i just flat out gave up. i’m a quitter. i tried again yesterday and was mildly successful at at least working the damn program. i plan to investigate using the mixer set up we have in the basement which would be much easier for me. see i kind of did the DJ thing many moons ago. my husband has DJ’d for many many years. at clubs and internet radio. we actually met when he was DJ’ing at goth night. i went to goth night religiously every week. those days, those days were love. anyway. we went to Detroit many a weekend to enjoy and participate in the airing of an internet radio program that he had been involved since it started or very nearly. it was great fun. i eventually had to tackle the DJ thing myself and i had a blast. we haven’t gone there in years. i don’t even know if it is still a thing. the guy that runs it doesn’t want anything to do with me and my husband doesn’t go do stuff like that without me. i wouldn’t mind, its just a thing with him. we very rarely do things on our own outside the house. he likes it that way but i’m honestly not a big fan of sitting in front of the TV every day all evening but what else am i doing with my life? right? he has been asked to DJ at a new (not really new anymore, we just never go) goth venue and i oh so hope that he does because i love that sort of thing. as i said, goth night is love.

i am more or less working on having a life and learning how to hobby.

life goals yo.

i’m doing life like other people. imitation is the sincerest form of flattery, right? right. so thanks Jocy Wocy for inspiring me to have fun with make up even if i got no where to be. thank you Sara for not being afraid to express your self through photography in all the fun creative ways that you do. Sara is also to blame for inspiring me to find a way to do something i once loved.

i’m a big fat copying copy cat and i have to just be OK with that because i don’t know how to have an original thought or idea on my own and i need things to be a things in my life.

here is my practice mix

there is reason to believe maybe this year will be better than the last

time for the obligatory end of the year blog post.

we all know 2016 was an awful year. so many wonderful, talented and beautiful people were taken from us. not just famous people, here in my world, two of those people were a big part of my life.

the coming year just has to be better but then there is the Trump situation. many people are sure that in 2017, things will just continue to suck. that is very possible but i am holding onto some hope for a better year.

in addition to all of the death and tragedy of 2016 it will always be the year that my illness progressed to the point of needing a lung transplant. up until May it was believed that this kind of talk was a long ways off. here i am, 15 months after being diagnosed, on the list for a transplant. i was supposed to have a lot more time before getting to this point. it is what it is.

i have resolutions.

i have hopes.

 

try, try, try again

i had big plans yesterday to get my self back on track eating healthy again and to put together a solid workout routine.

i’m off to a bad start. i had a cookie for breakfast.

i can still turn things around. i started a journal last night specifically to keep track of my eating and exercise.  i have daily goals to check off each day to hold me accountable. even with the holiday, well up to the actual holiday, i managed to keep my weight below the limit for transplant. i didn’t weigh myself on xmas day or yesterday but i will tomorrow to see how far off track i really am.

in addition to needing to be strong and healthy for transplant, well, i have just become disgusted with myself. i’m so fat. my hair is so short. i just don’t even want to look at myself. i need to start taking better care of my appearance. i need to put on make up when i go out and wear real clothes, not just leggings and sweaters. i’m getting my dreads put back in this week. i can’t care what anyone thinks. i need to do what i can to make seeing myself in the mirror every day less depressing. i have tried to make peace with my appearance. not to the point of giving up on losing weight and being healthier. just enough to make life more bearable while i am working to lose this weight. i have failed miserably. my “ugly xmas sweater” that i wore on xmas eve was too tight and i was so upset with how i looked in it when i saw pictures. i wore this adorable elf sweater dress on xmas and i was so hyper aware of how tight it was and how huge my arms were even under the sweater i wore to hide them. i hated those pictures too.

so i need to lose this weight. i looked in to this DDP Yoga that people have been talking about on FB. i saw some success story videos and the people in them were morbidly obese and had serious physical limitations but this program helped them get healthy and one man even regained the ability to walk. so these people are losing like 100+ lbs in 6 months or something and i only need to lose 50# tops. this should be fairly easy for me to do if i can just stick to it. i won’t be buying the DVD’s. i will just work with whatever is available on the YouTube and add my usual yoga routine. yoga really is the best for me with my breathing problems. i just can’t do any kind of cardio. so i will do the yoga and my usual strength training and do my best to stick to it. there is no reason for me to be so fat. it isn’t right to absolutely loathe my reflection. i have to do all i can.

i’ll save my thoughts and reflections on this ending year for another day. there are still a few days left for more horrible things. more reasons to be so ready to say goodbye to 2016.

 

“the smell of hospitals in winter…”

 

i had a horrible nightmare experience at U of M on Friday.

my anxiety has gotten out of control. if you have never had anxiety you might not understand. it has been physically painful. i’ve been unable to eat or sleep for the most part. i had saltines and couple pieces of cheese for dinner one night and have maybe been sleeping 2 hours a night. my stomach knots and turns with nausea.

it is hell basically and was an all the time thing. not just for a little while or only when my mind went to dark scary places. it was constant. it would spike even worse than usual when i couldn’t block out the fears and worries. will i make it through the transplant? will i have chronic rejection? will i ever even get the call? why is this happening to me? i can’t leave my daughter. i can’t leave my husband. will new lungs be wasted on me?

sometimes there was acceptance. i had no real control. this is happening.

that eventually feels too much like giving up. then the guilt sets in and the panic comes rushing back.

protecting everyone else from the fact that i am in fact dying leaves me feeling a bit alone in all this. i’m not being dramatic. without the transplant my prognosis is grim and plenty can go wrong after the transplant. the average survival rates aren’t great either way. i try not to think of those numbers though. just numbers.

so every day i was getting out of bed in a panic. unable to quiet these thoughts.

Friday morning i messaged my transplant dr about how bad my anxiety was. later on i got a call from a nurse in her office. something had to be done. for several hours i was on the phone with her off and on. one plan after another until they finally settled on something.

this back and forth nonsense only got worse when i got to the hospital. i was told to go to the psych ER so i did. then i was told i was supposed to be admitted to the 6th floor so they wheeled me up there. they said no, i was supposed to be in the psych ER first. so i was wheeled back down to the psych ER. none of this was helping me. my anxiety was getting worse by the minute. there was a lot of confusion and calls made and calls waited for until they finally told me i was going to stay in the psych ER and would see a dr in a few hours. at this point i lost it.i couldn’t even leave because of the winter storm. i was fucked. they took me to a room in the back to fucking search me. they tried to take my stuff. i raised a fucking ruckus. this was unacceptable. i was going to get an attorney. in the end they didn’t search me. they put me in a consultation room and gave me my stuff back. i couldn’t stop crying. a social worker came to talk to me and it was clear they weren’t going to help me and i was stuck there for who knows how many hours and she says maybe i should be admitted to the psych ward. she’s offering to have a stretcher brought in so i can sleep. she’s asking if i want anything to eat. if i could eat or sleep i wouldn’t be there. what the actual fuck. suddenly i was having awful chest pain and rushed over to the medical ER. i’m freaking out inside my head thinking how this is just going to delay everything even more and how will i survive this.

the ER was chaos. i can’t believe i was taken to a room as soon as i was. the room was quiet and the nurse was kind and the dr who came to see me saved me. i explained everything and she saw it as cruel joke. she gave me half a klonopin to ease my anxiety despite the transplant drs not wanting me to take benzos. she wanted to help me while she worked on her plan to get me admitted so i could get help. the klonopin helped a little. i even almost dozed off but my body kept twitching me awake. i was that tense and wound up. i was eventually admitted and taken to a room on the 6th floor.

i only slept maybe 2 hours as per the usual these days. i tried to eat. i was told i might not see the psych dr until Monday. i panicked, sure that i would miss Christmas.

the psych dr came earlier than i expected even after finding out he was in fact there and would be coming to see me. they had a recommendation from the transplant psychiatrist to try Seroquel. this drug is notoriously awful but it is supposedly very helpful for people in my situation. transplant patients who can’t have the go to benzos for anxiety. i’d had a bad experience with Seroquel but it was decided that maybe that wasn’t the med itself but irresponsible dosing. my previous psych dr upped my dosage from 100mg a day to 400mg. it went badly and i ended up in the ER and stopped taking it and soon found a new psych dr. so this dr says we should try it again at smaller doses through the day and a bit extra at night for sleep. if i was open to this. it was really my only option. it was either that or wait for the transplant dr who would want to do the same thing and probably not have a better idea. who knows when that would happen. the soonest outpatient appt was January 17th. i couldn’t wait that long. now that appt is my follow up.

fine.

they let me go home. there was no reason to keep me there when just being there was extra anxiety. i would be better off at home.so they held off on the first dose, i would start it at home. they didn’t want me falling asleep at the wheel. good thing cuz after i got home i showered, ate some bread took the Seroquel and promptly passed out in the recliner. my husband woke me at bedtime and i took my night meds, including the higher dose of Seroquel and i slept fairly well. still woke up a lot but got some real sleep. the morning panic came back but it went away after i took my morning dose.

this stuff was working. i was going to get my life back.

we had lunch plans with friends and we were able to keep those plans and i ate tons of sushi. making up for not eating at least a week.

the anxiety is still there, but it isn’t crippling me. it isn’t painful. the idea of going out by myself is still a bit daunting so i am taking it easy and slowly getting back to my regular routine.

my status on the transplant list is “on hold” until this anxiety is under control. i was told this when i was finally admitted. i’m ok with this. i was going to have my status held over the weekend for christmas anyway so i will just call after that and find out how to activate my status again. i’m hoping that by then this anxiety will be dealt with and managed. the way i see it, i will get my lungs when i am meant to.

so i’m trying to put my life back together. i’m doing my yoga. i’m putting on make up when i go out. i’m going to try and see people again. i’m going slow but i’m going.

 

 

“you are right, i’ll move on but my lungs feel so small”

more health shit.

i remember when i only saw my psychiatrist every 6 months just to check in and make any changes to my meds if needed. for a long while the only changes were a decrease in my meds. now? well i had to find a more competent dr and was seeing him every two weeks while he tried to find a solution to this insomnia thing. yesterday he prescribed a med for my anxiety that can take 4-6 weeks to do anything for me so i won’t see him for a month. everyone is out of ideas. even the sleep clinic was very little help. i’m scheduled for a sleep study in January but they don’t really think i have sleep apnea, just ruling it out to be sure. they suggested therapy which i’m already doing. she has been trying to help me with this issue for months.

i remember when i only saw other doctors when i needed to. i remember being annoyed when something would become an issue that took what seemed like forever to figure out and resolve. even with those annoyances i was fairly healthy. i didn’t know it though. i took that health for granted.

it makes sense that having a terminal illness would result in many doctors appointments. still, it wears you out. i was supposed to get a break from all these appointments after today but then my transplant dr referred me to see a liver specialist. so with support group that is two more trips to Ann Arbor this month. I’ve already been out there twice this month alone.

so all of this insanity on top of near crippling anxiety and insomnia and being sick, needing oxygen, stressing over my weight, all of this. it is breaking me down.

i’m trying to be grateful for how well i am doing despite my illness. i mostly only need oxygen when i’m active and to sleep, well to toss and turn all night. i was in the shower yesterday and got a little short of breath which reminded me of the days when i had to have a good amount of oxygen to shower at all. you would be surprised at how taxing the simplest things turn out to be when breathing is something you don’t do very well. the last time i came home from the hospital i needed a seat in the shower in addition to a high amount of oxygen. i needed to use a mask because a cannula didn’t provide enough oxygen for real activity. here i am being able to shower without oxygen. i should be grateful because i could be much worse off. i know firsthand how bad this disease can be. i should be grateful for how well i am doing now because this disease only gets worse. i’m on the transplant list because without a transplant this disease will kill me. i suppose this is the closest thing to “remission” that we get.

so i’m trying to appreciate this. this “good” health despite my illness. i think it would be easier if i wasn’t so anxious and unable to sleep. these things are especially frustrating because there is medication that would help both things but because of the impending transplant i can’t take them. i have these meds but they just sit in a drawer in the bathroom taunting me.

today i got out of bed with horrible anxiety, the new special torture these days. yesterday it was so bad i was afraid to have any coffee. today i said fuck it. i can’t handle caffeine withdrawal on top of everything else and having coffee is part of my morning routine. the anxiety calmed down rather than getting worse. it is still bad but slightly less bad. i am grateful for this and trying to see today as a better day than yesterday.

finding out the roads i have to drive on today are bad has spike my anxiety again but i’m trying to redirect that anxiety. telling myself they will be better by the time i leave. today needs to be better than yesterday.

i’m trying to appreciate what good i have going on.

-i could be much sicker than i am. needing more oxygen. too weak to exercise or leave the house. needing even more medication than i do. suffering awful side effects from the meds i do have to take.

-if these new medications keep making me sick to my stomach, killing my appetite, then i won’t have to stress about losing weight like i have been. it sucks. its not a good way to lose weight but its better than the alternative. so when i can eat i don’t have to stress about what i am eating. its the little things right?

-my husband is awesome. he puts up with so very much. he takes care of me. i might not be here if not for him.

-my daughter is happy and healthy. she has grown into an exceptional young woman and i’m very proud. we are going to have a lovely holiday. i’m so glad she will be here for all of our usual traditions and fun.

-we have great health insurance so its easier to handle the medical bills. we have a really nice home and happy marriage. i have a good car, the nicest i have ever had. money is tight for me but the important things are taken care of. i don’t have to worry about keeping a roof over my head or the utilities being shut off. those days are long behind me.

now i’m feeling guilty because i am sitting here struggling to add to this list. i suppose my worries and fears and anxiety and lack of sleep are overshadowing things.

today has to be a better day. i truly need it to be.

“and i cough up my lungs because they remind me how it all went wrong”

i don’t have cancer and don’t/haven’t known many people who deal with it but someone posted a blog entry on FB that i related to so very much.

it was written by an oncology nurse who has been diagnosed and is battling cancer and is apologizing for how she “didn’t get it” until now.

i know. do i really need to blog again? no. but i will anyway cuz you don’t have to read if you don’t want to and i need to do it. for my sanity.

i read this post and just kept thinking, “yes, this, i get it”.

it is very well written.

so…

I didn’t get what it felt like to actually hear the words. I’ve been in on countless diagnoses conversations and even had to give the news myself on plenty of occasions, but being the person the doctor is talking about is surreal. You were trying to listen to the details and pay attention, but really you just wanted to keep a straight face for as long as it took to maybe ask one appropriate question and get the heck out of there fast. You probably went home and broke down under the weight of what you had just been told. You probably sat in silence and disbelief for hours until you had to go pretend everything was fine at work or wherever because you didn’t have any details yet and wanted to keep it private still. You probably didn’t even know where to start and your mind went straight to very dark places. That day was the worst. I’m sorry. I didn’t get it.

being diagnosed for me was a scary slow process. things were so frighteningly vague. “lung disease” at first. that was it for awhile and i am embarrassed to say i never really knew how my lungs worked anyway. i just knew breathing was hard when i exerted myself and realized this had kind of been thing most of my life. like i could never run and i remember times when i over did it on the dance floor. i always just thought i was out of shape. the lung biopsy and 20 days in the hospital that followed, being on oxygen 24/7 all of a sudden…that was when shit started to get real. at first i was flat out terrified and certain i was dying, like any day. while in the hospital though i had to learn to control my crying because it was using up oxygen i didn’t have and i wanted out and they weren’t going to let me loose while needing so much. i kept working on controlling the crying even after i was home but it was real hard for awhile. then i had a good talk with a great nurse who explained things a bit better for me and for awhile there was some hope. i was able to decrease my oxygen needs and was showing improvement. my dr said i was a long way off from even having to think about a transplant. within 6 months though…back in the hospital and being transferred to the transplant team. the treatment wasn’t working. this was my best chance. for awhile that was extra scary because the average survival rate after a transplant is about 5 years. that is just a number though and many people are going on 20+years.

I didn’t get how awkward it was to tell other people the news. You didn’t know what to say. They didn’t know what to say. No one knew what to say- but there was some relief when the word started to spread. It may have been overwhelming to reply to all the calls and messages- and to get used to others knowing such personal information, but this nasty secret you’d been keeping was finally out and your support system was growing. I’m sorry. I didn’t get it.

at first most people were fairly informed thanks to FB but really this is an on going struggle when you have to wear oxygen. most strangers don’t say anything but some do. people have given me shocked looks and said things like “but you are so young!”.  this is mostly an issue when seeing someone who is not on FB for the first time since i got sick. they see the oxygen and have this sad confused look as they ask “so what’s this all about? you ok?”. you want to make them feel better, erase the look of concern and act like it isn’t such a big deal. once in awhile though someone will ask what the prognosis is. they know its serious and want to know how serious and how do you tell someone you are in fact dying of something there is no cure for? my particular flavor of lung disease has a survival rate in the 5-13 year range. transplant is your best chance at survival and life is sketchy and scary until that day comes and kind of always will be truth be told. i don’t have much practice at explaining this and only try depending on the person. in general i do my best to be as hopeful as i can.

I didn’t get how much you googled. I told you not to do it. You did it, a lot- and so did I. Searching for information, hope, stories like yours, reassurance. It was impossible not to. My new stance is to just know what a good source is when you google. I’ll help you learn to filter the information. And I promise to give you more information, because I know how much you crave it. It’s not realistic to think you will have the willpower to not search at all (at least it wasn’t for me). I’m sorry. I didn’t get it.

yep. i knew better but i was desperate for information. things were so very vague for the longest time. my actual diagnosis is in fact the epitome of vagueness. NSIP, non-specific interstitial pneumonia. “non-specific”. they can only guess at what the cause truly is of the two most likely possibilities, it could be both. i will feel very foolish trying to get more information from my dr tomorrow. i hope she just has some paperwork or something that she gives people who just can’t make sense of “non-specific”. she’s a great dr but i feel like she will be annoyed at my questions about something i should probably have already gotten a handle on understanding a long time ago now.

I didn’t get how weird it felt to be called “brave”. It’s a word that gets thrown around a lot, yeah it kind of made you feel good- but you still didn’t really understand why people would call you this. Sure you were getting through it fine (most days), but it’s not like you had a choice. I’m getting treatment because I have to- doesn’t really make me feel like much of a hero. I’m sorry. I didn’t get it.

omg so much this. when you spend almost your entire adult life hating yourself, certain that you are flat our worthless…things like this are very foreign to you. you certainly never felt “brave” or “strong” before and you don’t now. i exercise because if makes me feel better, helps me breathe better. i do what i do to stay healthy because it is very literally a life or death thing. i’m not brave just most of the time terrified of dying. so i do the things.

I didn’t get the mood swings. One day you felt confident that you’d completely beat this with no problem; you felt like you could take over the world. And for no good reason, the next day you were just convinced yours was going to be one of those sad stories people tell their friends about. The moods snuck up on you without warning. Literally anything could’ve been a trigger. I’m sorry. I didn’t get it.

i am no stranger to mood swings. these days though…that shit is next level crazy. seeing people dancing or running on TV brings up so much bitterness and sends me into either a fit of “i can do this!” or “i will never do those things again.” type of moods. that is just one example of “Literally anything could’ve been a trigger.” my rapid cycling bipolar makes these mood swings even more frequent and volatile than what i had been dealing with before my diagnosis. luckily for those around me i think i learned a long time ago how to keep these things to myself. it eats at me but i do my best not to drag others into my madness.

I didn’t get how much time this really takes away from your life. I always used phrases like “Cancer is like getting another full time job” or “Life doesn’t stop for cancer” when trying to prep you for what you were about to embark on. But now they just seem like corny catch phrases. It completely took over, you had to stop doing things you love, you had to cancel plans, you had to miss out on things that were important to you. It just wasn’t in any plans- and that alone took a lot of mourning. I’m sorry. I didn’t get it.

if you read this blog or follow my FB then you probably know that every aspect of my life revolves around my busted lungs. i am not even exaggerating. i obsess all day every day about food and exercise because i have to get and keep my weight down. i have to make sure i can have enough oxygen at all times depending on what i am doing. do i need to turn my oxygen up before i do this new workout? yeah i better just to be safe. which size tank do i have to carry when i go out? omg that person almost coughed right on me am i going to get sick and end up in the hospital now? these are just a few of the things i stress about on a day to day basis.

I didn’t get that it hurts to be left out. People didn’t invite you to things anymore. People felt like they can’t complain or vent about every day annoyances to you anymore. People acted differently towards you and it hurt a bit. You certainly didn’t blame them- you had even done the same to others when traumatic life events happened—and no you didn’t want to go out for drinks anyway because you don’t feel good. But you needed normalcy. I’m sorry. I didn’t get it.

this has become one of the harder more depressing things to deal with. we went to a holiday party recently and it was great to see people i missed so much but then i had to leave, didn’t get to see some of the people i had been hoping to see and it was sad to realize it had been over a year since i had seen most of these people. a year. once upon a time i was at some kind of gathering at least a couple times every month connecting and keeping up with everyone. i get that it is probably an awkward situation for people but truth be told i feel forgotten. i know i have been hesitant in the past to invite someone out due to something similar at some point. it feels like a courtesy but now i know it doesn’t feel that way to the other person. it is what it is.

I didn’t get the guilt you felt. Especially to those who are married. You thought about how unfair it was that your spouse had to pick up so much slack- mentally to help keep you focused and calm, and physically at home pulling double weight with never-ending every day chores. You understood that everyone promises “in sickness and in health” when you get married- but you still felt like they didn’t deserve this. You felt thankful when your spouse would say “go get some rest and I’ll take care of the kids” but your heart hurt overhearing them play in the other room away from you- wondering if that was a glimpse into their future that didn’t have you in it. I’m sorry. I didn’t get it.

i have enough guilt to start my own religion as it is. that is just my life but now it is so much worse. he does so much on top of working more than full time at work. i feel like a burden in so many ways and not nearly worth all the trouble. he makes sacrifices big and small because of the things i can’t do. i feel like i turned his world upside down and think maybe we shouldn’t have gotten back together. he could have been with someone who wasn’t so much damn trouble. i’m sure i wouldn’t be alive today if it weren’t for him though and my daughter wouldn’t have had such a great father all this time. i feel as grateful as i do guilty.

 

there is a lot more to the post but these are the things that resonated with me. the things i could relate to. i’m not trying to have a big pity party here, i’m really not. things are just feeling especially difficult lately. maybe being on the transplant list is a little too overwhelming for me. maybe it is the holiday season. maybe i am still not getting enough sleep. maybe i just really need a fucking drink.

 

“my lungs will fill and then deflate…”

i’ve been in a dark place for awhile now and i’m trying to climb out of it. i really am. well truth be told some days i don’t try as hard as others. it’s a dark place where sometimes i can’t find the strength to care enough to do the climbing.

i know that, especially given my illness, i should be living life every day to the fullest. i know this and i want this. i feel incredibly ashamed and guilty for the emptiness in my life. my day to day. i worry often that new lungs will be wasted on me. it is really hard to admit that. maybe it is one of those things you don’t say out loud. however, it is my hope that putting things out into the world holds me accountable to change them. in an effort to find a way out of this i am trying to remember what gave me joy when i was going about life taking my health for granted. this has proved to be rather difficult. it is easy to assume that things i once looked forward to are not things i can look forward to anymore. i’m not just sitting around feeling sorry for myself. i have a whole new reality to adjust to.

everything revolves around my busted lungs. my sleep has been so severely disrupted since having to stop taking my anxiety medication back in June/July. certain medications are off limits, because of the transplant. i have been super focused on and obsessed with diet and exercise. i have to get and keep my weight down, because of the transplant. my anxiety is turned up to 11 almost all the time. this has been especially awful the last month, since i was officially put on the transplant list. i have realized this morning that i have to give up on a medication that has helped immensely with my appetite. i had my suspicions last night and since waking up around 4 am this morning i have realized it is very likely increasing my anxiety even more than everything else already is. so now i have to get through the process of it leaving my system and i’m hoping it isn’t as bad as the first time i had to stop it. it shouldn’t be, i’m at a much lower dose. aannnd this is my life. medications and did i eat the wrong thing and i’m such a failure because i didn’t exercise and will i get any sleep tonight?

not even 8 am and i’m struggling. i tell myself i will get back to doing my yoga every day. soon as i finish my coffee just like i used to, everyday. when i was “so strong” and everyone was so proud of me. people keep telling me how “good” i look. they say i look strong, healthy…i feel weak, tired and fat. i tell myself i will practice the piano today. then i search. i search my brain. i search the room. how will i fill this day?

i decide i have to deal with the day as it happens. one day at a time is too much. i’ll enjoy my coffee. i’ll do my workout. i’ll hope that makes me feel better. hope i feel the strength people say they see. i really need to get through this week. i’m pretty anxious about my first follow up since being listed. i’m ready for Friday to be over. if i have to distract myself on my laptop all day that is fine. i will do what i have to do to get through this anxiety and maybe i’ll keep getting sleep with the new sleep med i’m on and sleep better when this other med leaves my system. maybe. maybe things will be easier when i am sleeping again. i have to believe i will get back to some kind of real sleep. i think i slept about 5 hours last night and only woke up a couple times. it has to be getting better.

i’m trying.