“Accidentally on purpose…”

the attention just encourages her..

Month: August, 2016

don’t listen to a word i say

my world is kind of a mess. for me anyway. its tiring but i struggle restlessly to fall asleep. hopefully that gets better as i figure out which new med is really causing it. i hope its the one ive stopped already. im so very tired and my body is weak. ihopehopehope its the medication. this cant be my life.

protecting everyone from the reality of my illness is tiring and sad and lonely. i was asked if i had all my affairs in order and i soon realized what a relief it was to be honest about all of this reality.

im frequently terrified of dying but im not allowed to talk about that. i dont want to be but i am and its scary and its so lonely living with it so quietly. sometimes i just can’t fight the scary.

when i can do something fun its easier to forget the very scary reality. unfortunately my life is mostly not fun and full of too much killing time. full of anxiety. uncomfortable just leaving the house on my own. something i thought was in my past. i feel like i need someone else to get me out of this house. sometimes that someone is the pup but walking has been so hard with this weakness.

this side effect game is getting real old. always something. something.


and it echoes when i breathe

i’ve been obsessed with food for awhile now. dieting does that to everyone right? i’ve only got 4lbs to lose to make my drs happy and i’d like to lose at least 34 to make me happy. maybe it won’t take that much. i won’t know til i get there. honestly i’m surprised that i’d be happy at anything more than 140lbs but i was just starting to appreciate my body the way it was before all this busted lungs nonsense. i swear it was the prednisone that caused all this extra weight. i wasn’t overly upset at 170 but 160 is better. healthier. i’m ok with being overweight a little. if it means i can live a somewhat normal life and still be healthy. see? obsessed. i’m counting the calories before i’ve eaten them. planning how many carbs i can have trying to find a way to have a real meal with my husband. like if i have a shake for breakfast or just yogurt and a low carb frozen dinner for lunch i can safely have steak and veggies for dinner. but then i remember that we may be going out this weekend and i’d like to have a cheat day so we can go out to eat. we haven’t done that in so very long. i like to do that because its a good meal that my guy doesn’t have to cook.

so yeah. i have my food all planned out for the day.

i measured myself and lost several inches all over so that is pretty awesome. i’ll be getting extra exercise today with the cleaning i plan to do. i’m trying to work on getting the house cleaned it just takes me a long time with all the breaks i have to take.


i’m done doing dreads at least for awhile. my steamer died died died on me and i’m not getting orders so i can’t really afford another one right now. i wanted to really make money at it but it just doesn’t seem to be in the cards. we shall see. maybe when halloween gets closer the freaks will come out and want dreads.

speaking of hair i am so very sick of mine. i had to take my dreads out because i was having trouble sleeping in them. i think the new set i made was just too long and thick. it sucks. my hair is so short. i hatehatehatehate it. i hope i never need to cut it for real again. i know i will have to keep up on it for awhile as i go through this awkward stage. i hope the vitamins i am taking will help it grow a bit faster. if you have any suggestions for helping with that tell a bitch.

i’m ready for sweater weather. really. i have so many great sweaters and they are just begging to be worn. not to mention i prefer hiding under a sweater rather than always wearing tanks and shorts. fall is trying to emerge. i’m cheering it on. come on fall!

that is enough rambling. time to obsess over my day. need to do my workout soon and make a plan for getting more cleaning done.

making islands where no islands should go

i need you closer

just like the song

i need you so much closer

the nights are long

the days so much longer

waiting for you

wanting to be touching you

i need you close

closer to me

without this vast ocean between us

every song reminds me

of the ending doomed to me

i want every moment

every possible moment

with you

how can you be so close

yet still so far from me

i want to empty this ocean

this ocean between us

because i need you so much closer

just like singing that song to you

i need you so very close

before i am lost to you

haunted by the girl i used to be

i’m so very tired. getting out of bed is harder than it used to be. i don’t know what is going on. i don’t think i ever had so much trouble with getting up and waking up before. maybe it has just been a long time. memory is funny for me that way. reality and remembering aren’t always the same. like how i don’t know if my breathing is on the decline or i has it been this hard all this time and i just started moving too fast thinking i was doing better than i actually am. i haven’t really been checking my O2 levels since i discovered one of my oximeters was off by 4% or so. maybe the fact that i can use less O2 comfortably while walking through the grocery store has made me think i am doing better than i am. but then there is the whole suddenly needing my O2 at rest and at night. this whole needing more oxygen thing is pretty scary. i mean, am i sick or are my lungs just suddenly failing or is this just a late bad reaction to the latest prednisone taper? i assumed it wasn’t the prednisone taper because i totally didn’t take my pills Sunday morning and was fine. i was fine until Monday night. that was when i started needing it at night. i wasn’t sure that was the cause of my restlessness until a lady at rehab mentioned having the same issue and the fact that i got to sleep fine last night with it and i didn’t have to try all the meds i thought would help. more serequel because i hadn’t taken the full dose for the day and my new psych dr had said i may find myself needing more while on such a low dose. nyquil because that always helps me sleep. norco because i always have a headache and had taken it for a couple days in a row. i thought maybe it was withdrawal somehow. i was baffled and desperate. so yeah. i used my oxygen last night at just 2L and i slept fine. maybe too fine with how hard it was to get up. now i am wondering, do i message my dr at U of M? do i just hope it gets better by the time i see her on the 30th? i mean, what can she really do aside from adjusting my prednisone dose and hoping that helps? as it is i’m afraid to taper down to 10mg which is, i think, where she wants me to maybe stay at once i get to it. i don’t even know. i don’t even know if i should be using 6L instead of 4 while getting about the house. do i start using my flow control valve so i can use it at the lower setting while at rest if i need it at 6 to get around better? someone tell me what to do because all i do know is that i hate being reminded so often how sick i am. i want to see my daughter but i’m afraid she will avoid me even more if i am not just sick but needing my oxygen while just sitting. i think, like me, she doesn’t like reminders like me needing more oxygen reminding us that i am sick. i am in fact mortal.

with all my thoughts and all my faults

my schedule has changed itself. i’m sleeping later and feeling lost about what to do with myself. i need to really work on getting to rehab more. these constant headaches and i mean constant every day headaches have really made life pretty difficult. i find myself unable to do simple things like read without making it worse. some days it is too bad to tough it out and do the things i need to do. i even had to reschedule an appt because of it. i’ll be finding an allergist more locally since that is not part of the transplant process. i hope that dr, an allergist, will have some answers for me. i also hope i’m not allergic to cats or something. it doesn’t seem like they could be causing the headaches but what if it is something like that? we had the birds for 8 years before i really had symptoms of lung disease. everything has changed. i like foods i never liked and meds are affecting me differently than they used to. i have even developed a bit of a resistance to anesthesia. what is this life?

i tried to leave my hair alone but i hated it so i have my new dreads in. i’m finally losing weight, sort of. a little bit. if i barely eat. i’ve taken to wearing glitter eye shadow. i don’t know what that is all about. the vanity is strong with this one. i’m waist training for awhile now and have seen zero results. i’ll be wearing it longer whenever i can. i’ve handled an hour a day just fine all this time i’ve been doing it. it doesn’t seem to be affecting my breathing so i may start wearing one when i am out and about.

that seems to be all i’ve got. things just feel empty lately. my days are too empty. my hobbies are collecting dust but so many things make my headaches worse. i think that is the real issue. i try to read and my head hurts more. i try to play my piano, same thing. etc etc so forth and so on.

i miss our little talks

everything about my life is so very surreal right now. i never thought i would have a life like this. the good or the bad.

i’m sitting downstairs in what is basically a second living room with a sweet pup laying next to me being so sweet. there are two ladies upstairs cleaning. i have so many appts with drs and all kinds of testing to get on a list for a lung transplant and i didn’t cause this lung disease, not to say that smoking a pack a day for about 20 years didn’t help matters. i’m sure it had to have contributed to at least some of my severe lung scarring.

in this unreal life of mine i have adequate health insurance to have not died from this disease already. my life was not pretty without my guy taking such good care of me. it wasn’t awful but there was struggle where there is none now. it took so long to even begin to accept the love he has for me. my love for him kept me from giving up. except for that one time when our world was shattered by my crazy but even then, though i had to leave there was still love there  however shadowed it was it was there and that love led me back to him and we are both so much happier for it. as cheesy as it sounds this is true love and it really doesn’t happen every day.

there is a fundraiser going on to help us with the excessive out of pocket expenses the transplant will cause and i hate that. i hate asking for money when we have a such a good stable life. it was highly recommended though at the class i had to take as part of this whole process. there will be expenses that would nearly bankrupt us if we didn’t prepare for them. i have yet to get in touch with the transplant department at BCBS about what they do and don’t cover. i really hope the prescription coverage stays the same because one of the meds i will have to take for the rest of my life is over $1000 WITH insurance if i have to get the name brand of it rather then the generic. i can’t see any reason to not be able to get the generic but there are so many things like that worrying me. so much is new and complicated.

i worry what people think of me, of us. having this fundraiser and still spending money on things. our grocery bills are higher with all of my diet restrictions. it costs a lot of money to diet properly. to diet without just starving myself. i need clothes that will fit and clothes i can wear when in the hospital. but i am also still going to try and get my last two tattoos. i worry most about how this looks but it is important to me. not just because of the tattoo that Mary has written for me so that i can have her writing on me like all the other so very important people in my life. i feel very much like i need to do things that foresee a long life. things i was going to not do anymore because what was the point if i was dying. i can’t think that way. there is also the fact that i cannot get anymore tattoos after the transplant. fucking hell i know it is a luxury but i’m not spending hundreds of dollars to get these last two. i know people will think badly of me for this. i know there will be people who don’t understand. it is what it is. after these tattoos or at least the one i really feel i have to have i will be putting money away to help us with the extra expenses we are begging for money to help pay for.

i fucking hate that.

what is this life?

my therapist explained to me why i am so very freaked out about the last test i need done. it is called a manometry test or something like that. they stick a tube down to your stomach through your nose to monitor possible digestive issues that might cause food or acid to go into your lungs. having tubes down my nose is absolutely traumatizing for me and i finally know the real reason why. my body remembers the abuse i suffered growing up and is reacting to this upcoming painful thing as something to protect itself from. it fears what it sees as more abuse. this is the cause of my anxiety about this procedure. they are discussing my case a few days before i am due to do this test and i’m hoping so hard that i am not sick enough to warrant being put on the list yet. its a long shot but still a possibility. i just hope if they decide that that they tell me before i have to go through this horrible test. i not only have to go through the tube getting down me but it has to stay there for 24 hours. fuck that noise. i hope my dr will find a way for me to have some kind of conscious sedation to help me through it.

my life is unreal. it is hoping every day to be able to breathe. it is worry about savoring every day i am given. fear of being hospitalized at any time. it doesn’t take much to sicken me in a near fatal way with my weakened immune system. i don’t know how to live this life.