Not how I planned, yet still so good.

Life is what you make of it and smooth sailing never made a skilful sailor.

Things are awesome at the minute, but that's not to say that they are going to plan.

For so long I have dreamed of owning my own place and now finally I do. I dreamt of shopping for the perfect furniture, of laughing and joking whilst putting it al together. Watching my mark take shape every day whilst finding the perfect finishing pieces.

Instead I have be designing from my bed in hospital buying and building between IVs and time away from the ward. There isn't a constant stream of energy, instead its been a matter of doing as much as I can during short periods whilst trying to rest and regain energy in between.

It has been exhausting. Sitting still for more than a few minutes, causes me to fall asleep. More often than not so deeply asleep that people struggle to wake me. I can fully say that it has been hard work, but anything worth doing is going to be hard.

It may not be how I planned it, but at least it is happening and for that I am truly grateful.

I'm actually currently in London ready for surgery tomorrow. Nothing to major, but to say that I fear tomorrow would be a truth. Not due to the surgery, but due to the answers.

Breathing is hard work. My surgeon on a recent scope said that I had trachieetis, which is inflammation and infection of the trachea. This would explain the difficulty in breathing. So after 2 weeks of iv meds, it should have cleared, but breathing is still hard.

I'm colonoside with a certain bacteria, which means that it will prob always be in my chest now, but the inflammation should have gone down.

That said, if the trachitis is still there then it maybe chronic and yet another thing to work around. However it may also mean that the scar tissue is building up at the base, which will leave me screwed.

I guess tomorrow I will known more. And as much as I fear it, I refuse to have my life controlled by fear. So I'm holding my head up high and being super proud of myself for getting to wherebi am now.

The work will be worth it.

Survivable

I thought it was time to get some stuff off my mind again.  Writting does help, so does ignoring everything and pretending its not happening, but I know I can only do that so long before a giant exploision occurs (see I can learn from the past.)

The last few months have been awsome, and hard and scary and happy and most of all full of yet more memorys. I gather those close to me and pull them closer, it feels good, better than when I used to push them away. And yet there are times I still feel alone and times when I dont feel alone, but wish I was. Things get confussing. Like seeing concern, worry, panic and generally sadness cross a loved ones face, then I wish I were alone. I hardly panic, I figure there is no use to it, sure I get scared, but I seldom panic. Either I will come out of the other side, or I wont. The way I see it, I seldom have control over such things. Im not saying that everything is survivable, just that everything except the last thing is.

The last month has included two admissions and one holiday. The first admission, was to my usual ward close to home, well I say my usual ward, that is a whole level of another story. The first few days, they wanted me in asap, and the only place with a bed, just so happened to by my old usual ward, the one where I first had my trach put in, the one where I spent months of my life, the same one where I more than a few close calls and respiratory arrests. Its been along time since I have been to this ward. Mainly because its a surgical ward and there is very little that they can do surigically. Most the staff have changed, but still, I hated being there. The place is stepped with memories. I did expect more of the staff to come by and say hello, however, after I while I recall that actully last time I was on the ward, I kinda walked out without telling them. Im not a rebel patient and I do do as I am told, but I was in pain, had lack of sleep and was talking to a brick wall. I had come out of surgery the day before. Due to the amount of scaring I have in my airway, the slightest touch is agony. The drs are aware of this and for this reason I am on things like Morphine when home. I take it, I deal with it and get on with it. Being in hospital, the nurses are in charge of painkillers. I hadnt sleept well ( i dont do well on little sleep) and for 3 hours solid I had been asking for painkillers. I was pacing the room in tears because I was in agony. They were discharging, I was just waiting on them to print the paper work. I live a 5 minute walk from the hospital. So I packed my backpack, walked home, took my painkillers and slept in my own bed. I would bet, that they didnt notice me gone for a very long time. They didnt ring to make sure that I was ok or anything, so yeah. But anyway, i digress.

So back on my old ward, I hated it, the staff seemed distant, untalkative. I barley saw anyone and felt like crap sleeping most of the time. A few days later, I was back on my own ward with the staff I knew. Staff who think nothing of grabbing a drink on night shift and sitting down talking to me in my room. So I did my 2 weeks of IV antibiotic, with a continous infusion of bryicanyl. and I began to feel better.

All wired up

I am under strict instructions on the ward that I am not allowed to mix. I avoid the social areas and I go home of an afternoon. So I have now told the drs that I dont like this new pattern and I hope that I dont end up readmitted. The pattern being that I was addmitted in Novemeber, and december and now januaury all for IVs, all for the same infection.

Who says hospital beds are made for one.

The problem being that I seem to be on one big circle (gross stuff in the paragraph feel free to skip) Because of my throat issues, when I cough, the trach tube irriatates my throat, causing it to bleed. I cough up the blood, which eventually clots. A few hours later when I cough again and irritate the airway, the blood clod shifts, which is super sticky and hard to move. A labrous 10 min coughing fit usually follows including headache, dizziness and general exhaustion. Eventually the clot moves and I can breathe again, but then I cough blood due to the coughing and we begin all over. Though because I have a unatural airway, it is actually possible to block the tube, which if I dont clear quick enough, I will pass out from and/or die from.

So yeah, generally not the best thing to experince.

None of the above can be fixed only managed. And so the best way to do that is to keep on top of any infections. Then we hit the next problem. the current bacteria I have, I am now colonised with (means it is unlikely to ever leave my lungs.) It is also resistant to nearly every antibiotic. For the time being, we treat it only when it gets to the point that we cant leave it any longer. At this point, im usually struggling to breathe, spending more time coughing than not coughing and sleeping at every opertunity. There is one antibiotic that can keep the bacteria under control, but if we keep using it, the bacteria will adjust and when I need it the most, it may become resistant. Its like being between a rock and a hard place.

I do my nebs everyday without fail. I am very compliant with treatment, I know that if I miss one session then I feel it in my lungs. My current session includes Salbutamol (short acting bronchodialtor - to open the airways) ipratropium (long acting bronchodialator - prevent bronchospasms) Hypertonic saline 7% (salty soloution - makes stuff on my chest looser) Amikacin ( anti biotic - keep on top of infections) Budesoonide (steroid - to keep inflamation down) +/- Dnase (DNA acting solution to thing the stuff on my chest - mega expensive, can only get limited options due to funding) I do these between 2 - 4 times a day depending. I also do chest physio and spend a minimum of 9 hours on a heated humidifier.)

So overall my team are on top of my treatment and I am doing everything I can to stay in control myself. And yet a week after coming out of the hospital and I feel like I am back to square one. If left to my own devices I can sleep for 14 + hours straight. The more I move, the more I cough and the more exhausted I get.

Im finding the whole thing frustrating at the moment. I always thought it would be the something surgical that would finish me off, my latley, it is looking more like it will be this infection. Its soul destorying.

But anyway, onto the nice things.
I have just spent a few days in france with my parents. It was nothing major, but a few days away from everything. Time to relax and just be. prescious prescious time with my family, doing silly unintresting things like cooking a meal and generally hanging out together. It was nice and I totally fell in love with the place that we stayed. One day, I want to own a beach house there. I think the air would do my lungs good.

I forgot a piece off my humidifier. Had to kinda do a Blue Peter job, but it worked. Do I get a badge now?

I am also doing 2 night classes. One for photography and one for guitar. I am loving it. I miss playing an instrument and the guitar feels like the right one to learn with. Its sitting next to me now as I write this. I have been practising my cords, until my fingers hurt. I will get better and I cant wait.

Anyway, long enough, thank you for reading and all that jazz.

Rebuilding

The day I was stabbed, was the day I died.
The Kim that was lost, was not the one that was found.
Everything that was once familiar, became unrecognizable.
The face I saw in the mirror, the body, was a stranger.
The voice I spoke with, not my own.

But I am returning.
Not as the girl who stupid
but as the woman I want to be.

So much changed for me in that instant. So much that anyone would find intimidating, never mind a 16 year old.
It was like being dead for months and then suddenly returning.
There were months, moving to years, when nothing, nothing good happened in my life. Where every blow was more bad news, were every day bought new obstacles that could be the end of me, every breath the potential to be my last.

To try and be someone that I wasnt sure I was anymore.
Friends abandoned me, unable to deal with the broken me, not able to comprehend why I changed and blaming me for the things I blamed myself for. Neither them nor me had the life experience or skills to comprehend what had happened.

Its only as I grow older that I am able to begin forgive myself. To heal the wounds that I have done to myself wracked crazy with guilt turning to hatred.
It kinda explains why I over think everything, why I have abandonment issues, because when I needed people the most, when I could have really used a support network, the people I trusted turned their backs, developed blind spots in my exact shape and size.
And I dont blame them, I dont.
But the damage that is done when we are at our lowest, tends to cut us the deepest and take the longest to repair.

These days, when someone does something nice for me, I am genuinely shocked.
And when someone raises a voice or expresses a dislike or disdain from me, I go running as fast as I can, usually to the depths of my being, to a very dark place. to a place, where I can be sure that I am in control, where I can say, hurt me as much as you like, for you can never hurt me more than I can hurt myself.

For so long, I couldnt accept all that had happened. And until now, I never really counted losing my friends in that list of things. But as I begin to heal and rebuild, I can see more now.
I still have a long way to but every step brings me closer to being the person that I want to be.

how long?

Its 2015 and as I look back on this blog all I can do is wonder how on earth it has been 18 months since I last wrote.

Time is like sand, running through my fingers while I am powerless to slow it down. One thing remains true though, I am so lucky to be where I am.

I'm going to try and glaze over a few things to catch up once again.

The end half of 2012, for me was pretty grim. I had a lot of emergency admissions, one of which found me back in theatre with the crash team at 4 am. I came close to being air lifted to London, before it was decided that I was too unstable to risk it. Instead we opted for a blue light transfer in a crouded ambulance. I had to be transfered with 2 anestists and a consultant surgeon plus the regular ambulance crew. That was fun.

I was discharged 2 days before Christmas, but my normal fighting spirit had run away.

Heading into 2013 I was a Shadow of my formal self. I had put so much weight on yet lost a heck of a lot of muscle. The thought if hospital made me want to scream and all I wanted to do was curl up and never move.

My surgeon agreed that we needed a break and I desperately wanted to remember who I was when hospital was not the main thing about me.

So for the past 12 months, everything was put on hold. No theatre trips unless absloutly nesscisary. I can honestly say it is the Best thing I could have done.

I have been abroad. More than once and achieved things I previously thought were out of my range.

I had gotten to the point where I was doing as I was told. Last year I got back to being the person who challenges a nov and finds a way around it.

I began going to the gym and whilst I will never be able to excel at cardio stuff (I end up a wheezing coughing mess) I can lift. I have worked at strengthing my muscles and this in turn has allowed mW more reserve when i am unwell.

I have lost some weight though there is plenty more to go. I have seen tortoises in the wild. I have travelled over the article circle, visited the most northern city in the world, witnessed humpback whales and orcas in the wild and had the privaliage of watching the northern lights. All of these things are magical, but the northern lights were truly unquie and I could do little more than stand awestruck underneath them, thanking everyone from my donor onwards that had allowed me to get to that point.

There are many people who have fought for me. People who have had the strength to push me when I thought I could go on no further.

I have made new friends alongv the way and cut out anybody who made me feel worse. And last December, I celebrated being 13 years post transplant.

That's not to say things have been easy. I have had countless infections, periods where I have coughed so hard that the vessels in my lungs have burst and I have nearly chocked on blood instead. I am now colonised with acinterbacter which will slowly destroy my lungs but nothing can be done about that.

There have been a lot of losses this year and though I won't write about an body specifically, they all hold a special place in my heart.

But I am in control of this life and this body. I have taken control and has the opportunity to do do my own IVs at home.
I was discharged again on Christmas Eve and planned Christmas day around trips to the hospital for blood tests and mixing my medication up at home whilst putting it through my own iv port.

Oh I had one of them fitted btw, an iv port that is. It has made life SDI much easier.

This year I have stated as I mean to go on.  Last week I was in London and watched the Matilda show at the west end. Right now, I am visiting a friend in Newcastle. This morning I had a go at archery and next week I am hoping to begin a night school course studying photography.

Right now I am living and loving it. I do everything with 100% of my soul and though life can be cruel the amazing highs balance out with devastating lows. But right now, life is within my reach. I am making the more most of it and putting my everything into achieving my goals.

(Edit: I didn't think it had been that long since I update, but seems my version of blogger was being naught . So instead think of this as a recap (as I only noticed after I typed it all out))

The 3 Hs, happy, healthy/ish and holidays.

This blog has been well and truly neglected. I would like to say that that is going to change, but I think we know that it is not true. So many things have changed though. I think back to when I started this, to who I was. I was deeply unhappy and not just unhappy, I depressed and remembering how bleak things were then and the things I did, makes me shudder. I never want to end up with things that dark again. I put myself at risk so many times. Overdoses and injuries, infections and abuse. I hope to never end up back there. 

But even thinking back shorter periods of time, things have changed so much. I have come to accept who I am, mostly anyway and that for the forseable future I will have a trach. That one is not so easy. Yes I hate the way it looks, but more so I hate the inconvience of it. The machienery that is needed for up keep, the changes in my voice, to having no voice sometimes. The inability to have a conversation if I am using my hands, the added caution with things involving water, dirt, dust or infection. But even so, I have to say that I am making the most of things so far. 

I have lost about 18lbs, I am eating healthier and I joined a gym to build up some muscle tone. Admittedly going to the gym kills me and I have to run a truck load of extra treatments to do it, but it is focusing on the long term effects that matter more at the moment. Oh and I havnt been for about 6 weeks as my latests infection has completely knocked me on my arse.

But apart from that I feel that I am living for the first time in a very long time. I am doing things that I want to do and ejoying them.

I have just gotten back off holiday were I spent some time in Turkey with realtives and in Greece. A chance to escape everything and unwind. I have always loved travel more than anything. I even found wild tortoise (something on my bucket list)

Speaking of bucketlists, I also go to meet and shake paws with an old english sheep dog and attended Creamfields where I watched Avicii live. I am currently pursuing seeing the northern lights.

So many things. 

That makes it all sound like it has been fun and joy and it has in so many ways, but there has also been the usual background rubbish involving numerous courses of antibiotics and admissions for IVs. After many years planning, they figured out a way to put in a porta-cath, which is a port underneath the skin in my chest. This allows me to have IV medication straight into that now, instead of having to cannulas and needles. I have also had sugery to fit a stent into my airway, to try and save some of my voice. It is helping so far, but is also causing problems such as pain and potentially adding to my infection build up. I need to go in for IVs at some point soon (I was last in about 2 weeks ago, having gotten out for my holiday)

I never used to be able to understand how people could become obssesed with making sure everything is clean and things like health being such a big thing to them. To me it was always something that was either there or not. But as time goes on, and I find myself having to elvauate myself and my circumstances all the time, I find that it does become a much bigger thing. Kinda, ok my breathing is noisy today, what do I need to do. Is it airway or chest, ENT or pulmonary drs. Does the risk of antibiotics and immunity outweigh the risks of lung damage and scaring. Do I want to gain a couple of weeks of voice and good breathing, at a cost of infection, pain and exhaustion from surgery. Most days I dont know what the answer is, but I can see how it becomes a big thing. But in the end, I know that all I can do is to keep up my treatments as best as I can and hope for the rest to fall together. 

In the meantime, I aim to enjoy what I have. Keep working on things off my list and trying to achieve things that most people my age have already achieved.

fears

I have written so many entries and half entries. Some I have fell asleep whilst writting, some just never made the cut, some I have gone to post, but just didnt. But tonight, I feel I need to give speech to some things that I have been locked up in my fears box wanting to get out.

Dont get me wrong, life isnt bad at the moment, and nothing drastic has changed. But tonight, I am feeling a little raw.

I remember growing up, I was brazen and cocky and had no fear of anything. But time and cirucumstances have slowly chipped away at that facade. Some for the better, but some not so much.

These days, I have so so many fears. I fear that I am going to be stuck in this exact plase forever. That I never will find a cure, never find a work around. The life will always involve living from one surgery to the next, running merley damage control because that is all there is left to run.I fear that I will die before I have had a chance to make a mark on the world. I fear that I never will experince true love or any adult relationship. That my end will come or I will grow old alone. Never to have a family to call my own. Never to really achieve anything. Not an eduction, not a job or career not anything of worth. I worry that my parents will always argue. That they will end up spliting up due to their bickering. Or worse stay together and one of them suffer for so long. I worry that one day I wont be there to tell them both to stop. I worry that one day I will do something that I cant stop.

There are so so many things. Being like this for the rest of my life and never experincing true love are my greatest fears. And there is nothing that I can do about either. All I can do, is hope for the best.

And I am going to leave that there for tonight. My heart hurts sometimes and seems heavier than anything else. Its hard work living as if nothing bothers you, as if every operation is a walk in the park, that at my age, I want life to revelove around hospitals and medication and treatment. I want to just find peace.
maybe...
one day....

Future progress and opportunity.

Things continue to go on the up and right now. I am feeling good and steady within myself. I have set myself small goals that I am achieving. Getting up at a resonable time (Which is before 10 btw) Still working on getting to bed earlier, but a few times I have fallen asleep mid night time nebs, which you would think would show me something but it takes a lot for me to get the hint. I am showering frequently, my room is tidy and everyday I am keeping on top of it. I am mostly keeping awake during the day unless I have really pushed it or gotten up extra early when I have a nap.

More than that, I have started eating clean and proper. Cut down on the carbs, and the junk food, completely cut out coke and soda. I have more energy I think. I have been trying to exercise. Small things, but I have noticed it getting slowly easier. And so this week I joined a gym. Now I am hoping against hope that I dont become one of those people who never use it. I wanted more advice on what I can work on and how. So after a session with a personal trainer, I have some better ideas. Cardio work is a struggle and so we have to keep that low and not push to hard, in order to keep my oxygen levels up and my pulse rate down. But weight work well for me. I aim to build muscle. I can do weight work, as you can go as slow as you need and still have it work. I am looking forward to going back.

My thoughts and aims is that is I build more muscle, my body will work more effectivly and therefore need less breathing to move around and leaving me able to do more. That is my theory anyway.

There is a long way to go, but I feel I am finally able to move on and accept who I now am, finally able to work on moving towards the person that I want to be, to achieve what I want to achieve.

I know that there will be obstacles in my way. I know it wont be a smoothe journey, but it is one I am ready for.

Oh, I also had surgery a fotnight ago. The findings were that my airway above my trach had closed to a pin hole, that was why I had such headaches and talking had become next to impossible. I pretty much expected it. For the time being the bottom of the airway, still looks inflammed, but scar tissue has no pushed its way through just yet. After talking we were throwing ideas back and forth, I like that I am able to do that with my surgeon. This guy is a world renowned surgeon and yet he can be honest about what he is thinking with me, can ask me what I think of his ideas and I am able to throw some ideas back at him to think on. Between us, we did come up with an idea, but the chances of it working are slim, however, it wouldnt require much hospital time and would be low risk, so it might be worth a go.  But for now, I am going with the trying to get my body into a better place first.

I think that it might be almost time for another adventure. I went to Alton towers with my 2 nieces the other week (Yes you read that right 2!) I was super excited as I seem to be building bridges and slowly getting family members back. Another one where time will tell. I guess there is a lot to wait and see for. Perhaps this is why the future seems so sparkly right now, it is full of opertunity, and that is all I have ever really wanted, the oppertunity for better.

Anyway enough ramble for the time being.