Look what I have just stumbled on.

I knew Eva had painted a few other people, but up until today I hadnt seen the results. 

Eva you were one amazing person, look at you still changing the world so much when it has been a while since you were in it. If only you could have carried on, its hard to imagine the places you might have been by now.

The picture is being used as part of the Canadian organ donor campaign Live Life, pass it on.

As for me, well im still in and im still on IVs. Do I feel any differnt? nope.
However, the last doc must have gotten a good vein, as my last cannula, is the first one I have had in the past 3 years that has lasted the maximum allowance of 72 hours. Fab news. However it has meant that it has had to be resited again today. 2 doctors, 7 stabs and I know have a new cannula in my little finger. I doubt this one will make it 72 hours, but maybe I will be out by then.

Though I was asked when i had to leave for London and told they will discharge me at the latest of lunch time Sunday. Fun huh? I intend on being out before then. Just waiting on stupid culture results.

Though I think the meds are finally building up in my system. I feel nauseous today.

But what is worse, is that I have stopped sleeping. Yeah very odd for me. And I cant work out why. I have tried taking my meds earlier. Tried winding down, wearing out and not napping. But alas I am still wide awake at 5. I eventually drift off and get woken for IVs or because I have to go the gym.

i dont know if my mind is going into dread perhaps. The last 4 or so nights, I have had the most awful dreams. Very vivid, very scary and very messed up, involving lots of dead people, killing and running. I wake up several times, even get up and move about hoping not to fall back into it, but I keep doing so anyway. Hurry up and change the damn IVs please.

As for Physio, I was assessed today. I am at pretty much the same point that I was at when I was discharged with my trach. I dont know how I feel about that. I have worked to build up my fitness and I have lost 20kgs, putting me out of the obese catagory and just into overweight. So that should help. But the restriction and hospital time is still taking its toll. But, at least I am not any worse.

Reflecting

I feel like, lately I always come here to moan. Thats really not how it is, its not so much that I am moaning, more reflecting, sometimes its sad and sometimes its not. But overall, I think I am dealing with things ok, all things considered. Though, if anyone who reads ever feels like I am being moany, please do tell me. Sometimes its good to her what others thing.

Last night, I was in a very happy, for no real reason. I enjoyed it. I was tired in the evening and planned to spend the night doing nothing in particular on the net. Instead, I looked up a pattern that I had been wanting to try since Christmas. It was not a very difficult thing, but it challenged me logically and manually. Figuring how to get the pieces together and how to get the right edges. But I did it after a few attempts (its nearly finished, just need to get something from the shop to finish it) I felt good afterwards. I learnt something new and I came away with something nice. I showed my mum and dad and they were both impressed. For weeks I had been down about things I cant do, but this is something that I can.

I have been doing a lot of thinking as well. I always say that I wanted to write this blog in hopes of finding people with the condition that I have so I can relate to them. And it has worked to a point. In the last year, I have spoken to a fair few people, through here, through a yahoo group, through a facebook group and few a few other journal sites. Whilst is has been a learning curve and something that I think helped, I am beginning to  think that perhaps deep down finding someone with the same condition, was not what I wanted/needed.

No, what would have been better would perhaps have been something like, finding someone with similar coping stragies as me, someone who perhaps deals with things in the same way. I dont want to blow my own horn so to speak, but of course bad news gets me down. My method for dealing with it, is that I usually get sad/mad for a couple of days and then I accept it and get on with it. I may disagree on part, I may look for alternatives, but I find the best way to go with it.

The person, in the last year or so who has left the biggest impression on me was Eva. I related a hell of a lot to stuff that she said and her whole attitude towards things. She was such an amazing person. I aspire to be like her.

The quiet acceptance, the compliance where need be, making the most of what you can and being thankful for anything anybody tries even if it dosnt for example work. I know this is not an easy attitude to have and I wouldnt expect most people to do it. But I think I need to find some role models and other people working the same way. I need to once again relate to people.

There are people at the other end of the scale and I dont blame them and I am cautious to what I am saying as I met a few of them through blogger, so it wold not surprise me if they were to read this. I dont mean it as offensive, just different.

Sometimes, it feels like, people kind of demand to be fixed, by the person of their choosing. Kind of 'I'm sick, fix me how i say, where I say, when I say.' I know that not everything can be fixed and I am eternally grateful for everyone who tries to instead improve things for me, even if they dont work. There is often a chance that I wont come away any better off, to which I say its worth a try. There is also a chance that I will become worse off, to which point, I weigh up the consequences and it becomes my discsion to take the risk or not. I would never bad mouth someone for the result.

I dont know, I guess I am contemplating thing a lot, my attitude, other attitudes. Good guy finishes last and all that shizz. But I am begining to ramble. I also have news in the land of tracheal transplants and such, but right now, I dont feel upto posting about it as I havnt figured out how I feel about it yet, so perhaps tomorrow.

Getting their monkey

So on the positive, I am feeling a little better today. I awoke about 10:30 (which is early for me) and I have not napped through the day. I dont know where half the day has gone if I am honest. Did some washing ready for my hols, but had hoped to have my bag packed by now (oh well) instead I have a huge big pile on my bed of things I want to take. (But I might rant some more about that tomorrow. lucky readers huh)

Im still chocking off and on, but generally Im coughing more muck up which has got to be a good start and my temp has stayed stable all day.

I did have a coughing fit before (I have had a fair few today, but this one sticks in my mind.) My dad was napping in the chair in the corner. I started coughing and spluttering and mum knocks me on the arm, gives me a glare to kill, and tells me to shut up as dad is sleeping. Well excuse me for breathing! As horrible as it sounds I hope one day she ends up needing a trachy for some reasons just so she can see what it is like. Its not like normal coughing, you cant shut your mouth and make it quiet, you cant do little coughs as it will just block up the tube and you cant hold it in as it restricts your intake.

I do hate having a trach, but I have had to adjust to it. However, I think mum hasnt yet. Which is kind of annoying. oh unless, we are out and someone mentions something and then she is all 'oww poor her blah blah' as she like the attention, which annoys the hell out of me, as I dont tell people things (I still have the whole I want to be treated normal thing going on) *sigh*




Anyway, this evening, I went with a friend to see Dear John. It was sad in places, predictable in others. The bit that got me the most, wasnt even a sad bit. The song Paperweights by Joshua Radient was playing in the background a couple of times and all I could see was Eva's smiling face from the video she made with the same song on. Its nice to be able to think back and reflect on her being happy, kinda gives you hope you know. I do miss her, but she will always live on through the people who remember her and those whose lives she touched.



Oh and i had another cough/chocking fit, while I was paying in the cinemas, which wasnt fun. I was using my disabled card, so I kinda had to be present as they need to check I match the pic and such. So I just kinda had to turn my back on everyone and face the corner, while making some odd noises.

I am nervous as hell for tomorrow. The nurses are coming out to the house to change my trach tube. This will be the first time it has been changed outside of hospital. Im nervous incase there are any problems with it going wrong and such. But I should trust the nurses, that it is going to be fine. (I hope)

On that note, I should get some sleep as I have a lot to do tomorrow.

(Oh and someone commented on a lot of my entries today, but I cant seem to click into their profile, so sorry if it seems like I am being rude or anything, I dont mean to)

Every time is adventure time!

Today was a bank holiday, which meant a long weekend. (woo) Not that it makes a huge difference to me but my mum had an extra day off work and yeah.


Friday night, I didnt end up going to bed till about 2:30 am (yeah I know that isnt exactly late for me, but I do try to go earlier on a Friday as I have to get up to help mum on a Saturday morning.) But it was Eva's memorial and it was being live streamed from Canada.


It will be availble soon to watch (well you can watch it now, but its not good quality) but I felt the need to watch it live and I am so glad that I did. First off, hearing how Eva grew up, how her spirit has always shone through even when at her sickest, listening to her friends best memories of her, learning how much her family treasured her. She really did live a wonderful and full life.


But more than that, with the live stream, there was also a live chat. I was able to talk to people who went to school with Eva as well as others whose lives she had touched. It was nice. Her legacy truly will live on.


So I have decided to stop being a wimp and so I am going to upload the video I filmed at easter as a record of my voice. The quality is kinda crap as I had to turn my mic volume up full and I was only using the one installed on the computer, so you can hear all the computer workings too. Maybe at some point, I will dig out my old mic and redo it.





So yeah. I know I have a horrible accent, but that is my voice at the moment, sounds kinda like a whisper. I am fine around friends, but often if out, strangers ask why I am whispering. blah. Also, its harder to talk than normal talking as I literally have to force air out of my throat. If I talk too much (which isnt a lot really) I tend to get bad headaches, I can only assume these are from lack of oxygen or something. I tend to take painkillers for them which numbs it a bit, but sleep is the best cure =]


There has also been another change. A more visible one if you like.
I have changed hair color. I would post pictures, but I am not that happy with the pics I have at the minute and I want to put a few pics in from a while back, so maybe I will do that tomorrow.


So I have been shopping and got a few new top for my hols and I am also in the process of moving my 'entertainment system' around. I usually have my wii plugged in under my tv and my cable and dbox under my tv put not plugged in. The reason for that is that my tv is in my wardrobe type thing on the wall. The wii fits on the shelf underneath, but the cable and that just about fit, but once you put the wires in, the doors wont move past it. Well today I managed to get a long extension lead so I am in the process of moving everything to the other side of my wardrobe where there is more room. (though the wires will look a bit more messy) it should prevent me having to plug everything in all the time and I think the remotes should still work from my bed (bonus!.) I am part way through doing it, but I have had a few issues, my dbox currently wont pick up any signals, I should have checked it really, but it was working last time I used it (maybe a month ago) and its rare that all the channels go at once, so I will have to have a better look tomorrow, no doubt I have wired something in wrong.


A dbox, by the way, is a german satellite receiver that runs on the cable (now virgin) tv system. You usually have to program it yourself, but you get more channels than you would on cable alone. (shh)
Once that is working I will need a longer scart, then to decide if I want to plug my dvd player in or just stick to running dvds through the wii. hmm. I've run out of scarts though, but maybe if I can get a long scart to phono It would be worth plugging in also. (hehe no wonder dad shouts at the electricity bill)


I might post pics once I am done.


Anyway enough rambling.

London Free Hospital

So I have been a little out of it of sorts since I got back from London. Think I was over tired and it kind of amazed me how long it took me to recover. I mean I am what, 24 and 1 day trip, where I was only really walking around from about 4pm till 9pm, so 5 hours and it took me 2 full days just to recover enough to wash my hair. When I think that it was only last July that I was down in London and going for about 5+ hours day for 3 and 4 consecutive days. I thought i was recovered yesterday, with being in a good mood, but today I can barley keep my eyes open. Went the shop with mum earlier and fell asleep in the car just driving to the shop.

Anyway, onto other things.
So whilst I was recovering I didnt want to sleep permanently (though I pretty much did) so I began making the video that I said I had the urge to make. I have done the bulk of it, just needs about another hour spent polishing it up, playing with sound levels and fixing a couple of transitions.




Tell me what you think so far please. I know it will never do Eva justice, but as I said in an earlier post, this is more for me, to remember her by so Im not even sure if it is going to go anymore public than this blog. Plus there is the whole copyright thing to think of.

My next challenge if I decide to go public with it, is to get around the filters on youtube as it keeps muting the audio. It wouldnt be such a bad thing, but it mutes all the audio, not just the music, so I lose all the voiceovers too. I either need to find different music (but im kinda attached to the stuff I have, especially the last bit) or find a way around the detector.

So seeing as I am working backwards in time pretty much, im going to put down what happened at the hospital in London. I will eventually post a second post of what I did in London, but I am still in the middle of fixing the pics I took. (No tripod and it was wet and miserable so there are not many good ones)

So we get to the hospital, and it dosnt look like a hospital, it looks more like an old fashioned shop (again look out for pics.) I saw the consultant he is supposedly the best surgeon who deals with tracheas in the UK. He had not read through the letter so he glanced down it while we were sitting in the room. Then he asked to see all my medications. He laughed when I pulled out a big bag and was a little shocked at the amount of them.

Once that was done with, came the icky part that I knew would happen but was hoping it wouldnt. He decides to put a scope down while I'm sat there. So first off he sprays my nose with the icky tasting stuff that numbs it and up goes the camera. Now I have had this done a fair few times in the past and it always feels like I am chocking on it, however it was gentler this time as he couldnt go very far down due to my trach (bonus!) I was a little disappointed still though. In my usual hospital when they put the camera down, the images are displayed on a big screen behind me, so I usually ask to be turned around before they start meaning that I get to see the screen myself. (Yes I am a fan of gore) This one however was only a little one with an eye piece.

Anyway. he basically said that my upper air way is very red and very inflamed and it shouldn't be. He therefore thinks that something must be causing the inflammation. He agreed that I should have as much gunk on my chest as I do and that it shouldnt be as thick as it is. So he thinks that something is irritating my throat, creating the inflammation and the gunk. He asked if I had had a swallow assessment (which I hadnt) as it could be something like food or drink going down the wrong way causing it.

He has asked my surgeon here to organize a video fluoroscope, which is where you have to eat and drink different things while being observed and x-rayed. He also wants to get me in for another Bronscopy with an over night stay so he can get a better look. And if the professor person I emailed is free he wants him to sit in on it.

Ultimately, further action will depend upon the outcome of those 2 tests. He did talk a little about tracheal transplant as he knew that was what I had spoken to the other surgeon about. He said if nothing else works, then the transplant will definitely work to fix it (YAY!) However, it is not yet a licensed procedure in the UK. Which means that it could be years before the can legally perform the surgery on me, but im still hopeful. He also said that the success rate is much better if I lost some weight. So thats something I am going to have to work on.

He also looked at my neck, where it has been red and sore. He said it looked like Pseudomonas which is a bacteria that is fairly resistant to treatment. He said if it was this, then the chances of treating it would be extremely rare as it is hard to get rid of given its position. The next morning the nurse swabbed it and sent it off for cultures anyway just to be sure. I do have some bactroban there, but I am reluctant to use it. The bactro ban is a cream that can help clear things like MRSA up, however if you use it to much it wont work any more, so I am only going to use it when it gets to the point of being to sore to manage with normal painkillers.

And I think thats everything. so its all a waiting game at this point. It will probably be June when I next go down to London as the surgeon is away for April and I am away during May.

=]

Hmm So I thought my next post ought to be an explanation about what was said while I was in london. Im still processing it to be honest and my brain being like a sieve I have forgotten a lot of it. But that is not the reason for keeping you all in suspense (if anyone cares that is lol)

Today, I feel good. I am in a good mood. Its been a while since I felt like this and thought I ought to take the oppertunity to jot it down. Its something that I wouldnt have thought I would feel after the last couple of weeks so I'm enjoying it. And I dont think anything has sparked it either.

My friend is still in hospital and so wont be coming to visit at easter, which is disappointing to say the least, but its what she needs so I am happy with that.

ooo I bought a new scarf thing while I was in London. Its really pretty, like a purple color but when you move it it changes between white and gold. Like this:

That kind of shows it. And yes I am wearing it on my head currently. My hair is sticking up everywhere and needs washing but I dont have the energy so I will wash it either tonight or tomorrow. But as it was annoying me, I thought I would cover it. Like this (excusse the state of me I look rough and have no make up on and just generally ick)

It feels wierd not to have my head surrounded by hair. For the last 7 years I have had short hair cut around my face so people cant see my ears (and ultimately my hearing aids) However I kinda feel like a fat version of the girl with a pearl earring with it like this.

I know i dont have a pearl earring in but still.

So I thought I would leave you with some stuff that makes me smile today.

(This one is a bit adult)


<3 Stephen Lynch
I absolutely Adore these and once I am well enough, I will be going to see them Live.


(I love most of their songs but the above one I played for my anesthetists last time I was in ICU lol)

And of course, this one I have just been dancing around my room to while straightening up. It is an absloute must for any road trip.


In other news, I have been inspired Since Sunday to make a video. Its been a long time since I got inspired to do anything like that so I am going to go with it. It is going to be for Eva and to tell her story & promote her message. It will probably be rubbish as I am not that good with videos, but this is more a thing for me, my way of dealing with it. And if it helps anyone else if  I decide to upload it, then its a bonus.

And I think I have bored you all enough today.

Emotional Rollercoaster

It has been one crazy week on an emotional roller coaster.

First I got my letter to go and see a consultant in London, had me jumping for joy (well if I could manage jumping). Then I had a discussion with the nurses that come 3 times a week and we agreed that it would be good at this stage to drop it to once a week and after a couple of weeks not have them out all (except for tube changes.) This left me feeling a little unnerved. I know its good as it means I am getting better and dont need them, I'm learning to cope with looking after myself now. But at the same time its scary because it means I am responsible for looking after myself and then there is the whole what do I do if things go wrong or I get ill.

It was my dads birthday on Monday so I saw my sister and family, which was nice but left me feeling a little drained. Then I found some of my family who I havnt spoken to for a long time on facebook. That was an odd feeling, seeing how much they had grown up and changed. Felt nervous talking to my mum about it but it seemed to go well.

Then I found out about the whole Cushings thing. Im still not sure how I feel about that. Its scary and the treatment options are scary, but I guess I just need more time to adjust and to speak to someone who knows a little bit more about it or about me.

Friday I went for a meal with my parents, which was nice, though I struggled to stay awake the whole time, I felt so drained. I was also filled with self destructive urges.

Then got plans sorted to add some new 'staff' to my volunteer team. This is a huge step as my little team is growing into something to be proud of. It is still int he making, but I have worked hard and gotten everything ready for them.

Saturday I heard about Eva dying. I spent a good few hours crying. She is such an inspiration and so brave till the end. I wish I had some of her class and style. She will always be remembered and has made such a difference to me and so many others.

And tomorrow I go to London to speak with this consultant and hope and pray that there is something they can do to help, to allow me to breathe fully and to talk once again. I would love to get rid of this trach, it is really starting to rub raw at the moment and is so sore.

I couldnt sleep last night.  Lot going round in my head. Mainly Eva and London. I curled up with my music on and watched the sun rise out of my window as tears slowly plopped off my chin. My head just does not seem to know if its coming or going lately. Even the whole london thing is marred. I mean yeah, it would be great to be breathing and talking, but then there is the whole ethical side and going back on the transplant list not to mention can I offered the traveling up and down for treatment. But I am trying not to dwell on that at the moment. Im still not getting my hopes up until I speak to them tomorrow and find out what they suggest.

I finally got to sleep around 8am this morning and I was going to have an early night, but as its already 12:20 I think that has gone out the window. oops. So up early tomorrow. Its going to be a long day.

Eva

Eva <3
WOW
I'm stunned.
I really thought you would get the call.
You fought long and hard and put up on hell of a fight.
I admire you Eva, you inspired so many and you will never know how many you helped.
Just receiving a letter from you brightened my day while I was in hospital.
You told me to keep fighting and I have and will.
Just wish you were there to share it.

My thoughts go out to all your family and friends at this point.

Breathe easy Eva. No more tubes and wires that you hate, your free to run and dance down the sidewalk in your heels.

Small Things and Big Thanks

The last few days I have been thinking what to write. Im not sure how I feel at the moment, my mood seems to change a lot depending on what I am doing and how well I am coping with it. I still remain hopeful for the possibility of a future transplant, but still trying not to get to hopeful and dealing with coping with things as they come.

People keep asking me how it feels to now be free of the ward. Truth of the matter, well yeah it is good, but there is still al ot of the hospital type routine going on. Between sorting out meds, nebs, physio and other such fun I have a ton of appointments. I have to see the nurses every other day, with physio in the gym and then all the hospital appointments and GP appointments that I have to keep up with. For example, next monday, I have to see the district nurse, then I have a thoracic appointment, a bit later I have a cardiology appointment and later again I have a dermatology appointment. That is as well as doing my usual physio, nebs, medication regime and my exercise. So truth be told its really not that much different from the hospital most of the time.

I was sitting in the waiting room this morning waiting to get my bloods done (which turned out to be a 2 hour queue) after physio. I hadnt been able to eat or drink due to having to fast from 9pm last night so I was in a bit of a crap mood anyway. And I was looking around.and people watching to keep myself awake and it occurred to me that the closes person to my age sitting in that clinic was at the very least 15 years older than me, but with most people there being about 50 years older. So I decided to write a post about how this was my life, surrounded my medical stuff in and out at all times. (I mean even when im well, I would have at least 2 appointments a month for physical stuff an thats not counting psych stuff.)

Well, Im sure most people know how much I can ramble by now and would expect a couple of dozen paragraphs on the negative aspects of that.

But when i got home there was a car waiting for me in the post. I was curious as soon as I saw it, I didnt recognize the writing and it had a postal stamp on from the same area I live in. When I opened it, I was touched, truly touched.

It was from a doctor that I have only seen twice (dermatologist.) She knows about my self harm as she recommended and prescribed some stuff from the scars she saw on my arms, but was nice enough not to ask questions or judge. She also knew my basic medical history as of course she had to take a review and was curious about a lot of the meds I was on at the time. Anyway, in her profession, she deals with patients all the time (obviously) a lot with cancers and other nasty stuff that would be horrendous to suffer with. But she sent me a card, to say that she was touched at the stuff I had been through and the future surgeries and such that were planned. And that I she admired the way I was dealing with it all. She knew that I had been in hospital again as I had had to cancel one of her appointments due to not being well enough to leave the ward to attend it and so she wanted to send me message to say get well soon.

I was shocked. You know, im sure she has seen patients go through much worse that me and I am also sure she is pretty busy, yet she took the time to write to me. It was nice. It made me realise that yes it might be shit to go through the stuff I have going on, but there are bonuses as well. I have met some great people along the way and learnt a lot from them. That might be medical staff, general hospital staff, patients, relatives, friends, others suffering, people from other forums and blogs. But I have taken something from every encounter, even the negative ones.

I have a lot of people to thank. Matt, Cam, Irene (even though I still call you ween in my mind :p) Duff, Alison, most people from RYL (you know who you are) RYL itself. Eva, The hundreds upon hundreds of doctors, surgeons, nurses, porters, cleaning/kitchen staff, family, friends and those who I have read about but never spoken to. To all the people who comment on my blog (I have trouble replying to comments on here, but I do read every single one and they make a huge difference)

I am thinking of everyone who is struggling right now and wishing them best wishes, be with medical stuff, mental health stuff, waiting for treatments, waiting for cures, waiting on transplant lists. Keep fighting all of you,  you will come through it and you will take more away from it than you ever realize.

I have 2 requests to anyone reading this at the moment.

First off, if your not on the organ donation register please please sign it! There are two many people about dying because of this taboo subject, to many people who deserve a chance.

And second, take 5 minutes out of your time to write to someone you know who might not be doing so well right now. Be it a PM a comment, a email, a FB message or even better good old snail mail. Pass on the good feelings. You never know how much it will make of a difference it will make someone's day.