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

by kaleidegirl

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?

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