Had my annual review today. So had to starve as had to have my glucose blood sugars done. Got to the hospital at 8.30 had bloods done the lady had to stick me twice as the butterfly needle she used wasn't very good they've got new ones or something. I have always thought butterfly needles are not great anyway as surely the blood starts to clot in the long tube bit? well I did mention that and she said yeah it does especially if your taking alot and the blood comes through slowly which mine did lol . Anyway after that went to clinic where the nurses were there is one nurse who i get on well with called Cass. The physio Mixed up the "lovely" glucose drink for me. and it took me a good 10 mins to drink as it is so foul tasting. After that had a chat with the physio she is pleased with how i'm doing there abit concerned bout my lungs as after 3 weeks of iv's i'm still not that great. She checked my posture aswell as Cf's tend to hunch over abit due to all the coughing. i am slightly hunched which isn't to bad. Also my right shoulder is abit higher then my left but that could be cos i always carry my handbag on my right side lol. she also listened to my chest and said my right side sounds very crackly which makes sense as the other night i was having alot of pain with it She also felt the base of my chest and asked me to take some deep breaths My left side doesn't move as much as my right side but that's mainly due to where i had the bottom part of m lung collapse. Don't know if it's still collapsed or not but I'm sure the chest x-ray will show it if it is.
After the physio i saw the dietician she is nice and probably 1 of the only dieticians that i've ever got on with. She was pleased about my weight as it has gone up again which is great.
we talked about blood sugars and that mine have been a bit high and that maybe i should see the doctors at the diabetic clinic. there was also talk of maybe me having insulin i'm not to concerned about it as if it needs to be done then it needs to be done lol. She was saying i need to take maybe 1 more creon tablet with my meals so instead of 6 i'm to take 7 .
It was then nurse cass's turn to chat to me we went through all my medication then we discussed some things about transplant as i was a little worried that they may ask me to have a peg feeding tube (this is a tube that is put int
o your stomach so you can have feeds overnight to help boost our intake ) I'm not keen on the idea of having one so that's why i worried abit but cass says cos of m weight gain that i will likely not need one and that they may just give me a NG tube( this is a tube that is put down your nose and into your stomach) I've had one before and found it very uncomfortable but if it required for transplant then i am all for it. We then discussed my mum as it was clear i was not happy. My mum and her fiancee took me today which is good of them but at the same time it make sme feel crap. My mum moans about everything when i'm at hospital like how long is it gonna take? who you gotta see? Today she was like i don't wanna be here all bloody day... My reply was yes this is fun for me to!!! She winds me up big time. My mum's fiancee was then like don't you get snotty today! Hello this is happening to me not you but out! I feel like it's such a chore for her to take me to hospital you'd think being my mother she wouldn't mind but there ya go.
Like if i'm ill i have to go to her house if i wanna see her she won't come round here. As she has to much to do blahblah... I've tried talking to her but it's just thrown back at me that i don't understand how stressful it is for her? She don't live with me so whats stressful about it for her she is the one who walked out and decided she hated her life not that it's much better now running round after her toyboy cleaning and cooking for him. Me and Cass then talked about my anger towards my brother I feel angry towards him cos i find doing normal day to day things so hard and he just sit's on his computer or sleeps and basically does nothing. He eats the stuff i buy myself also it really annoys me! Also said about how i feel bout not being able to go out clubbing and swimming and stuff I was invited out for a friends birthday but i can't go as i know i won't feel great and won't enjoy myself and it would just spoil it for the rest so don't wanna go. The only friend who really bothers with me is Charly she takes me to hospital when i need to go and is always there to talk to. If it weren't for her i prob wouldn't leave the house. My dad is amazing always doing stuff for me and looking after me and I feel bad cos he shouldn't have to me being 24 i should be able to take care of myself! He says he don't mind but i do lol After transplant i don't think it;s fair that he should have to look after me until i am stronger it's not fair!
after talking to cass i went for my last blood test and then x-ray and then home. I just went straight to bed when i got in as i was so tired still am now but can't sleep all evening .
Today has really made me think and has actually made me quite sad also I feel very deflated and very alone!
Complaint Letter to Revolution Bar
10 years ago
1 comment:
In an odd sort of way this almost cheered me up to read. My parents are the same, they NEVER come to see me in hospital, not once the whole time I was pregnant and in hospital for four months did they come, not once!!
They always made excuses said it was too far, they were too tired blah blah blah, yet should a band they like be playing the other side of the country or world for that matter they are off like a shot. It is eternally disappointing and hurtful, especially when I read other CF people's blogs and see how their parents still look after them.
Once when I said to my dad he had to keep my room as it was after I left home so I could come back when I got sick, he told me he and Mummy would be too busy and that I'd just have to take care of myself or go to hospital.
Like you said clinic and hospitals are bloody boring, it's not like we WANT to be there is it really so much to ask for some company?
I am also totally with you on the getting annoyed about people who just laze about when I'm so desperate to have even a fraction of the energy and physical capability they have and choose to squander, it is so frustrating!!
ARGH!!
I guess when I get most angry and upset and hurt I just have to be firm and remind myself a lot of the parental crapness is just a coping mechanism, they can't bear to see us ill and suffering and hanging about in a hospital just rubs their noses in it. CF is especially evil and makes a lot of parents feel really guilty because it is genetic and so they feel like it is all their fault.
Stay strong honey, you will be on the list and then out clubbing with your sparkly new lungs before you know it
xox
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