Anger,and a nightmare time!

Has been a few days since i last wrote all been a very hard and stressful time for me at the moment so just needed to gather my thoughts and calm myself down. Tuesday i didn't stay in as there was no bed i already put this in my previous blog. Anyway Tuesday night i had gone home with my NG tube in and i moaned about it all the time as i just could not adjust to the sensation of it in the back of my throat. I then tried eating something and it just felt awful going down as it kept tugging on the line. So anyway i settled my self down to go to sleep and i started coughing rather alot and the line kept hitting the back of my throat next thing i know i had been sick and the line was hanging out my mouth so i had no choice but to pull it out. I was very upset as i knew the hospital would think i had pulled it out on purpose. My brother was really sweet and came and cleaned all my sick up and chnaged my bedding and got me some more pj's i hadn't eaten alot but man there was so much puke! sorry i was just shocked at the amount there lol.
My dad came down to see what was going on and i was in tears cos of what the hopsital would say and he was sweet and calmed me down saying it wasn't your fault and they'll just have to deal with that.

So next day which was wednesday i was dreading going back to hospital. my mum and her fiancee took me. We went to the treatment centre and i was popped into one of the siderooms. after about 10mins one of the nurses walked past and said Jo you didn't meaning i had pulled my tube out oh what a surprise so i just calmly explained what had happened. Then again and again people kept presuming i had pulled it out myself so at this point i was pretty down and frustrated. Then the disscusion of having it put in again came up and i said no i've tried it and i couldn't adjust so no it's not happening again. But everyone kept going on and on and on my mum kept saying if you don't your gonna die cos they won't give you a tarnsplant. Then her fiancee said have you lost the will to live cos it sure seems like it the way your going. Then one of the nurses said do you not want a transplant then? OH MY god just cos i said bloody no to this F-ing tube does not mean i wanna die or that i'm going to or that i don't want a transplant! I am alive and kicking and am going to remain that way for a bloody long time. At this point i was on the phone to my dad crying my eyes out about it all. He said if you don't want it it's your choice your the adult no one can force anything on you. Then my mum and her fiancee came back and i just went mental and lost it they were just going on and on saying it's such a small thing to have done but to me it was not smal it was scary and i found throwing it up very traumatic now that may sound stupid but it really was that bad for me as i was very against the ng anyway but gave it a go to please everyone not that it worked. So my mum and her fiancee went and got all my stuff out the car and dumped it in the room with me and i kept saying bye then. Again i rang my dad he was really angry and kept saying i'm gonna come get you but i told him not to. Then one of the nurses came in and said i was hardwork and that everything always had to be about me and that my mother was just caring about me. I then turned to her and said she doesn't know what the realtionship between me and my mum is like and then she started going off on one and pointing her finger in my face so i said i don't have to listen to this FUCK OFF! She then lft the room. I may have been out of order but i had just lost it and felt so out of control from everyone going on at me and saying the same thing over and over again i really just couldn't take anymore.

My fave nurse who i can acatually talk to came in and calmed me down and we had a chat and i brought up the peg thing it had already been mentioned but i was not in the right frame of mind to hear about it. So anyway we chatted and i said if it's done under a general i'l have it.

Le me explain how my mind works. If people go on and on and on at me about this and that then i swicth off and won't do it. But if people all back off and leave me to think things over myself then i am more likely to co-operate. which i did.

So after our chat the picc line lady came in ready to insert a new one as they wanted me to have some iv's she got all setup and my fave nurse stayed with me. the local was put in didn't flinch as it didn't really hurt then she started pushing the line in but it kept getting stuck and then it hurt when it hit the edge of the vain! ouch! Then i started feeling very light headed and burning up so the nurse had to go get a fan and some water. The piccline lady kept talking to me saying are you ok? are you going to throw up? Then she said i'm just going to inject some more local into your arm! I was like no wait not a good idea right now then she kept going on and on are you ok blah are you going to faint. You know when you feel faint you just want every one and everything to shut up so that you can calm yourself down and concenrate on staying conscious well i am like that anyway. it's like when you wanna be sick and someone rubs your back i fidn that makes it worse! I may just be weird though lol. so anyway i then said please i can't talk right now just give me a minute and shhhh! After about 2 mins i finally managed to get it to pass and i started to feel ok again. I apologised to the picc line lady and explained i find it more helpful if people don't talk to me when i get like that she understood which was cool. she then looked for the vain and it had gone whoops! so she said i don't think we should try again as your vains have all vanished we can try again tomoz. I dunno why i nearly passed out as i wasn't scared or nervous about having the line put in. But when i had my first piccline done i went exactly the same could it have been a reaction to the local? hmmm! So after that i was taken to the ward and put in a sideroom as i won't stay in without my own room and bathroom to scared of catching stuff on a ward. plus i was always told cf's get priority over the rooms. So i settled in and chilled out. i had a venflon put in my hand no probs not painful in my hands lol. then they hooked me up to a drip so i could have some fluids that had some potassium in it. i was like what if i need to go for a wee how am i going to move as it was plugged into the wall. they were like just call us and we'll disconnect it. I thought well that's abit annoying for them and me as they'd then have to come back and re attach me so i worked it all out myself in the end it's not hard really just push the hold button and clamp the hand thing off and unscrew and your free lol. so i thought this way was much better saves them having to keep running in and out and i know if there really busy it'd take them ages to come do it. The machine was a pain in the bum tho as it kept bleeping everytime i moved my hand lol it didn't like the hand being moved. I came to a compromise with one of the nurse's to try tobi through the neb instead of iv's they were happy with this but were worried as my brp had gone from 15-33 in a week so something was brewing in my lungs. I slept pretty well that night until the machine started alarming cos it had finshed so unhooked myself and off to sleep again lol. Thursday was full of confusion i was being told that i could have a peg under general but my lungs have to be better then i was told iv's were starting today and then i was told i would be in over the weekend i was like huh what?
So i rang the nurse up and she said no no friday your going home and iv's were holding off on and i'm gonna arrange your peg date i was oh cool can you please tell that to the docs lol. and then a nurse came in with some sedation for me to take she was like the picc line lady is here ready for you. I was like oh jesus not again. so back on the phone to my nurse i was like erm picc lady is here eeek! can i not just have venflons if i need iv's please i'm scared of the piccline lady lol. she said yeah no problem. so i was happy and the piccline lady said ok Jo no worries. so all was good. My mum posted a topic on the cf forum for me as it was costing a fortune to use my phone. It was about pegs and local and general sedation. most people had had theres done under local with some sedation and remembered nothing about it so i was kinda like oh ok hmmm interesting so i gave the nod for it to be done under local with sedation as everyone was concerened about a general being to risky. so should be getting it done soon. Also had to have some test done cos of my cortersol levels have dropped really low and it could be a cause of the megace. :(. i also found out how the other girl who was put on megace was doing it turns out it was making her hair fallout! so they took her off it she is due to have a peg to.
My dad came to see me he had just sat down when one of the cf nurses came in and said oh it's just aswell your dad is here you could be being let out today. i was like really? i was all prepared for another night lol even had my pj's out ready for bed hahaha! So the doc said i could leave so me and my dad packed my stuff and off i went YAY! i got home and relaxed it felt weird being home tho always does after hospital lol my cat wouldn't come near me.
I slept pretty well again that night.

Friday my dad had booked a few days off work to chillout with me. i rang the hospital up to get the results of the test that was to do with cortersol levels and they had come back out of the normal range so they might have to either re test monday or stop the megace. :( i'm sad about it as it really is helping me eat. but it maybe causing damage to my liver :( so unfair! i just slept most of yesterday. I watched the big brother final and was shocked at who won ULRIKA!!!! who the hell vted for her! i wanted verne to win :( he finished 4th.
Today again i have spent my time relaxing and taking it easy i really feel like the tobi is wokring for me as i am so dry and ardly coughing. oh the docs also looked into my shoulder pain and it's something to do with mucus plugging and killing cells in that area so the pain is not treatablt and i just have to keep taking strong painkillers great :( so wheelchair it is for when i go out anywhere then great! Got my grandparents coming over tomoz haven't seen them for a few years. back to hospital monday will update you all about it then. bye bye