Me as Mario
Hey blogland,

Well I just got in from a very busy day. Firstly I didn’t sleep last night which meant I was going to Papworth on zero sleep which wasn’t actually too bad because I thought hopefully the car journey would send me to sleep and that’s 3 hours long but no because of all the traffic as it we were driving in Rush hour traffic which seems to go on for at least 2 hours. This meant the car journey was pretty jittery and I couldn’t sleep at all. I got to Papworth where we did the regulars, bloods, weight, blood pressure and a chat. Then we were called in to see the consultant. Now I love the Papworth team they are just the loveliest bunch of people but the guy I got today, I have never met before and didn’t feel like I related to him very well at all.

So I let them know that I have officially stopped the Iloprost because it really was becoming too painful to carry on doing it. I did as Hammersmith had said, if I was going to stop it I had to stop it gradually which I did. But this guy turned it into “You do know you’ll have to take ALL of your drugs post transplant?” YES!!! Of course I know that you condescending idiot. He made it seem like I have no discipline with my meds. I think I have a lot of discipline with my meds I lasted on Iloprost 9months without complaining even though I was in a horrendous amount of pain the entire time! I couldn’t put into words how much it hurt, there were days that after I did my Iloprost I just wanted to cry and curl up and die because my chest hurt so much. Now I’ve stopped it I obviously still get my chest pain but it’s my normal regular chest pain not me doubling over in pain, chest pain. This guy just didn’t get it. If he knew me he would know that I have taken and been so good with all my medication for the past 11 years, but he doesn’t know me so it just seemed to him like I was some jumped up little girl doing the doctors jobs. I have done EVERYTHING I have ever been told in regards to my health, but it never hurt me to do that, I was never in physical agony and the one time I decide to think for myself and so something about it. I just feel like that guy was judging when he doesn’t even know me.

The nurse I had was super lovely I don’t mind if I have her again I feel like she understood me and where I was coming from. I think I’m going to have to ring Papworth next week to try and explain myself.
After leaving a feeling pretty awful about myself we came home I got no sleep in the car again but managed to get about 2 hours when I got home. Then tonight was Roller Disco night for my sisters birthday every-one decided to dress up in 80’s themed stuff. Most were in fluorescent stuff and crimped hair. That was me but then the person who was supposed to be Mario decided that the outfit wasn’t exactly flattering lol so I said I would go in it because James didn’t want to be Luigi all by his lonesome. It was really fun and I got to take loads of photos and just chill and people watch :).

So that was my day. I have a Hammersmith appointment on Monday where hopefully we can figure some stuff out but at the moment I feel like no-one is helping me. My parents keep telling me it’s my decision, useful! The doctors at Papworth just listen but aren’t offering a resolutions because obviously they’re just waiting for me to have my transplant. Then Hammersmith just aren’t listening to me when I say I’m in pain surely that should ring some very large alarm bells in their heads and decide to do something else? Right now I just feel like I’m fighting a battle pretty much by myself. I know it is my battle but I just wish I felt like I had the doctors help because right I don’t feel like I do and it sucks.
Hoping Monday provides some result.
Night guys have a great weekend :)
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  1. I keep my fingers crossed for you that Monday will be different and receive the help you need and wish for.

    Have a lovely and hopefully sunny weekend too :)


    1. Hi Napoleana, Monday was much better thank-you and the weather wasn;t too bad this weekend, spring is definitley on the way :D xoxo

  2. Its horrible when people speak condescendingly like that esp doctors! hope monday goes much better.
    have a lovely weekend xxx

    1. Thanks Miriam, I know sometimes a condescending tone can make any comment even if it's not a bad one, sound bad does that make sense? Lol. xoxo

  3. I really like your blog :)
    Come and visit me on : www.olivains.com

  4. Good luck for Monday. I've just hopped over onto your blog because the caption on your blogger button "Life is worth the fight" really hit a nerve with me. I've read all of your 'about me' page and i made sure i did before commenting on anything. I'm sure you get this a lot but you really are a remarkable person. There's just so much fight and determination in you, from what i can see. You're really doing a great thing by raising awareness for PH. Some people complain about the littlest things and you just carry on as best you can, to me, thats amazing. I'm instantly following your blog now!
    Sorry for the long comment, i wanted you to know that i've actually read your blog rather than skim through and tell you that you have a 'great blog' or something.- Lilie xx

    1. Hi Lilie, Thank you very muchI hope to raise more awareness in the future and it's actually pretty fun doing it :). I like long comments or whatever form they come in lol. Thank you very much and I hope you enjoy reading it in the future too :) xoxo

  5. Omg I love the Mario outfit, so cool. First time on here and it is soo nice, i have gfc you. = ) xx


    1. Thanks, it was actualy super comfy it was like going out in a onsie, even if it wasn't one of the most flattering outfits :). Thank you xoxo


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