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.