tag:blogger.com,1999:blog-46529938808062168212024-02-19T05:26:12.541+00:00My Generally bitter ramblings.Im a 26 year old female, who should hold the job title of professional patient these days. Although that is a pretty low paid job.
Really, I am just a regular 20 something person trying to find my way in life, whilst fighting a body that seems intent on trying to kill me.Bitter_Angelhttp://www.blogger.com/profile/04575126047702158106noreply@blogger.comBlogger501125tag:blogger.com,1999:blog-4652993880806216821.post-75992185108131108992015-07-28T01:21:00.001+01:002015-07-28T01:31:12.961+01:00Not how I planned, yet still so good. Life is what you make of it and smooth sailing never made a skilful sailor.<br />
<br />
Things are awesome at the minute, but that's not to say that they are going to plan.<br />
<br />
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. <br />
<br />
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.<br />
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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.<br />
<br />
It may not be how I planned it, but at least it is happening and for that I am truly grateful.<br />
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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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
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The work will be worth it.Bitter_Angelhttp://www.blogger.com/profile/04575126047702158106noreply@blogger.com0tag:blogger.com,1999:blog-4652993880806216821.post-51783630767738758252015-02-28T23:19:00.002+00:002015-02-28T23:19:44.933+00:00Survivable 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.)<br />
<br />
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. <b>Im not saying that everything is survivable, just that everything except the last thing is.</b><br />
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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.<br />
<br />
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.<br />
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<tr><td class="tr-caption" style="text-align: center;">All wired up<br /></td></tr>
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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.<br />
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<tr><td class="tr-caption" style="text-align: center;">Who says hospital beds are made for one.</td></tr>
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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.<br />
<br />
So yeah, generally not the best thing to experince.<br />
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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.<br />
<br />
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.)<br />
<br />
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.<br />
<br />
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.<br />
<br />
But anyway, onto the nice things.<br />
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.<br />
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<tr><td class="tr-caption" style="text-align: center;">I forgot a piece off my humidifier. Had to kinda do a Blue Peter job, but it worked. Do I get a badge now?</td></tr>
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<br />
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.<br />
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Anyway, long enough, thank you for reading and all that jazz.Bitter_Angelhttp://www.blogger.com/profile/04575126047702158106noreply@blogger.com0tag:blogger.com,1999:blog-4652993880806216821.post-20563905000338345082015-01-22T00:15:00.001+00:002015-01-22T00:15:58.165+00:00RebuildingThe day I was stabbed, was the day I died.<br />
The Kim that was lost, was not the one that was found.<br />
Everything that was once familiar, became unrecognizable.<br />
The face I saw in the mirror, the body, was a stranger.<br />
The voice I spoke with, not my own.<br />
<br />
But I am returning.<br />
Not as the girl who stupid<br />
but as the woman I want to be.<br />
<br />
So much changed for me in that instant. So much that anyone would find intimidating, never mind a 16 year old.<br />
It was like being dead for months and then suddenly returning.<br />
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.<br />
<br />
To try and be someone that I wasnt sure I was anymore.<br />
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.<br />
<br />
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.<br />
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.<br />
And I dont blame them, I dont.<br />
But the damage that is done when we are at our lowest, tends to cut us the deepest and take the longest to repair.<br />
<br />
These days, when someone does something nice for me, I am genuinely shocked.<br />
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.<br />
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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.<br />
I still have a long way to but every step brings me closer to being the person that I want to be.Bitter_Angelhttp://www.blogger.com/profile/04575126047702158106noreply@blogger.com0tag:blogger.com,1999:blog-4652993880806216821.post-36207745899765544002015-01-12T00:14:00.000+00:002015-01-12T00:14:40.425+00:00how 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.<br />
<br />
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.<br />
<br />
I'm going to try and glaze over a few things to catch up once again.<br />
<br />
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.<br />
<br />
I was discharged 2 days before Christmas, but my normal fighting spirit had run away.<br />
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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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
I have been abroad. More than once and achieved things I previously thought were out of my range.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
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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.<br />
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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.<br />
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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.<br />
<br />
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.<br />
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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.<br />
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.<br />
<br />
Oh I had one of them fitted btw, an iv port that is. It has made life SDI much easier.<br />
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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.<br />
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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.<br />
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(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))<br />
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Bitter_Angelhttp://www.blogger.com/profile/04575126047702158106noreply@blogger.com0tag:blogger.com,1999:blog-4652993880806216821.post-43250863465649971232014-10-19T00:11:00.000+01:002014-10-19T00:11:09.737+01:00The 3 Hs, happy, healthy/ish and holidays.<div class="separator" style="clear: both; text-align: left;">
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. </div>
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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. </div>
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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.</div>
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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.</div>
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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)</div>
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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.</div>
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So many things. </div>
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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)</div>
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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. </div>
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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.</div>
Bitter_Angelhttp://www.blogger.com/profile/04575126047702158106noreply@blogger.com1tag:blogger.com,1999:blog-4652993880806216821.post-27914301519187795732014-09-20T01:25:00.001+01:002014-09-20T01:25:54.906+01:00fearsI 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.<br />
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Dont get me wrong, life isnt bad at the moment, and nothing drastic has changed. But tonight, I am feeling a little raw.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
maybe...<br />
one day....Bitter_Angelhttp://www.blogger.com/profile/04575126047702158106noreply@blogger.com0tag:blogger.com,1999:blog-4652993880806216821.post-59491776052509213292014-09-03T02:53:00.000+01:002014-09-03T02:53:20.790+01:00Future 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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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Anyway enough ramble for the time being.Bitter_Angelhttp://www.blogger.com/profile/04575126047702158106noreply@blogger.com0tag:blogger.com,1999:blog-4652993880806216821.post-77786202640977295792014-06-19T22:57:00.000+01:002014-06-19T22:57:01.980+01:00Im ready.I havnt posted in a while, I guess I have been trying to get a handle on where my life stands and how I feel about it all.<br />
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Last week, I had a panic attack, only a fairly minor one one night, but still, the first one I have had in a long time. Since then, I have done some pretty serious thinking.<br />
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I know what was bothering me, what was causing the problems. Its the whole death and dying thing. Things were put pretty bluntly and just when I thought that I had made up my mind, the words of the surgeon, bought my whole world crashing down upon me, making me reevaluate my decisions.<br />
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My mind has been everywhere, between denial and despair, joy and triumph. And its only now, as fear builds up its height, that I am truly able to see over everything.<br />
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Last year, my extended spell in hospital destroyed so much of me. It broke me beyond where I thought repair was possible. Not only was it a toll on my body, it was a toll on my mind, my spirit and my resolve.<br />
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But today I look back and I can admit that I was broken and it was scary. It has taken a heck of a lot of work to build myself up again and the mere mention of surgery was enough to make me quiver with visions of being the ill again. But I am not that person any more. I am stronger, I have faith in surviving again. Back then, taking a shower, would be a long and draining process. It would take all I had to manage it, before collapsing with exhaustion on my bed to sleep for hours. But now, I am still restircted, yet I am able to shower without needing a break. I am able to do that and more besides. I have made peace with who I am and more than that, I am oh so grateful for what I have.<br />
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These last few weeks have been amazing. From going to Turkey with my niece, to greece with my parents. Visiting Devon with my family and this past weekend, Alton Towers with my two nieces. I have taken steps to rebuild bridges, I am slowly bringing my family back together. Its early days and its baby steps, but my heart feels happier for it, at the prospect of once again being close to others.<br />
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Of course the flip side to that, is once they go home, I am filled with this lonely ache deep inside me. It has taken all of today and yesterday for me to put a name to this feeling and recognise it for being lonelyniess. But that is a good thing surely, for recognising, instead of wanting to shut away alone, away from everyone.<br />
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Right now, I am happy. I feel strong, I feel positive. And more than anything else, I guess I should say that I feel ready to defey some more medical boundries. So my sleep patterns not great and bad thoughts fill my nights. But right now, I am able to fight that.<br />
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And so, next week is going to be a simple in and out of hospital trip, everything to plan and I will bounce back from it, as I always used to. And I will talk to the surgeon. Its my turn to tell him where I think things are. That, sure, I am not runing any marathons, nor joing a talk show. But right now, I surviving. More than that, I am flourishing within my limits. I still have enjoyment, I am still able to do the things that I want to, just with a little more support than usual. I am not ready to pin my life on a risk. I am however ready to fight. Ready to achieve some more goals. Ready to kick ass and fight back.<br />
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And so, my thoughts are still against me, the dreams, the flashbacks, the panics. But my physical self is still here. I still have a way to go. And I am ready to go that way.Bitter_Angelhttp://www.blogger.com/profile/04575126047702158106noreply@blogger.com0tag:blogger.com,1999:blog-4652993880806216821.post-3122618278835833812014-06-06T01:56:00.000+01:002014-06-06T01:56:58.134+01:00Take a breath and let it goI feel fine. I feel happy during the day, occupied and my mood is fine.<br />
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But it gets to night, and I cant bring myself to wind down to sleep. Its silly oclock by the time I do drift off. But when the house goes quiet, and I relax and watch some tv, then the thoughts come streaming back. Thoughts of harm and damage. Cravings of death. Which is odd, as the thing that I want least during the day is death. But I know that damage is not far away either. It wont take much, just a small slip. But the thoughts wont leave me alone. At night, I feel truly terrified, but I dont know what of. I am apprehensive about going back to london in a couple of weeks for surgery, I am more so apprehensive about their plans for me and what I want. I also know that I am not strong enough for what they do want. Physically and mentally. Last year I was a mess, the time in hospital, left me broken, to the point that I am still trying to rebuild. There is no end in sight. But why does my mind spin it down to destruction and damage. Its thoughts like this that once again push me to a place where I feel so alone. There is no one that I can turn to about this, this isnt anyone who even knows my thoughts.<br />
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But on the other side, whilst this is going on in the background, I am enjoying life. Achieving goals, having fun, taking pleasure in the small stuff.<br />
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In the mean time, have my current favourite song.<br />
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<span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">When you <span style="white-space: nowrap;"><u>watch </u></span></span><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">he world just turn away</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">And break the promises it made</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">When love is all too hard to hold</span><br style="background-color: #ccccdd; border: 0px none; font-family: Verdana, Arial; font-size: 13px; margin: 0px; padding: 0px; text-align: center;" /><span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; text-align: center;">Just take a breath and let it go</span></blockquote>
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Bitter_Angelhttp://www.blogger.com/profile/04575126047702158106noreply@blogger.com1tag:blogger.com,1999:blog-4652993880806216821.post-42965113880435299862014-06-03T00:16:00.000+01:002014-06-03T00:16:01.882+01:00Rock and a hard place, but its not to bad.Ive been meaning to write for a few days/weeks now. But the words have been lost to me. In here, I often talk about how I feel, but right now, I dont know what I feel. I guess, my current outlook is nothing has changed in the grand scheme, but I guess I should stop being so damn cryptic. This maybe a long one, but hopefully not to depressing.<br />
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So the last couple of months have been a bit of being here there and everywhere. My chest started to complain a while back, cue a week of oral antibiotics, which was extended to two weeks. Things didnt clear and began to get worse, so next came a course of 2 weeks of IV antibiotics. Things still didnt feel right, but I was due to go away. I had an amazing 10 days in Turkey, but struggled to keep my chest moving. Coming back, I had a emergency, where I almost blocked up. That scared even me, without my experince, I dont know if I would have survived it to be honest and at least not without major intervention.<br />
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This led to another admission for IV antibiotics, this time 3 weeks, yet I still didnt feel better. Culture results came in and I have 3 types of bugs growing in my lungs, which are all resistant to a lot of medication. Fun times huh. I had another course of oral antibiotics, to get me through my holiday (My parents took me to Greece for a wonderful week (more about that shortly)). but I still feel crap. We have decided however to wait and see how things go, before attempting to clear this set of bugs.<br />
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In between that, I have been to clinic down in London. That wasnt particularly inspiring either. After a discussion with my surgeons, we agreed that I am pretty much out of options. He said that he has seen a fair amount of patients get to where I am now (though not as quick) with repeated infections, that become resistant to medication. In the end, the infections kill them. One of the major downsides of having a trachestomy, as you bypass the normal preventative methods the body has for avoiding infections, to add to that, I have a lowered immune system to prevent my body rejecting my transplanted liver.<br />
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We spoke about the potential to put in place a T shaped stent, but we mutually agreed that it would not work for me due to my chest issues. So I am stuck at this place, where I keep getting more infections and treatment gets less useful. And there isnt an option there.<br />
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He wants me to go for transplant, when the opportunity arises, but I dont think that I want to go for it. It is hugely risky, with a poor outcome. Even afterwards, there is no guarantee that breathing will be any better for it. Previous cases are experiencing a lot of problems.<br />
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In short, it comes down to either, staying as I am and knowing the infections will kill me, or go for transplant with no idea on what the outcome is likely to be. Its almost like choosing which way you want to die.<br />
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And yet nothing has changed. I found a way to be able to use inhalers so that I dont need to be tied to my neb during the day, which is a good thing. My chest team are being excellent, trying for funding for meds that they hope will help.<br />
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As I say, for the time being, nothing changes.<br />
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And I still feel ok overall.<br />
Just back from greece, where I was spoilt rotten and put on about a ton of weight. It was hard work staying well and harder still being discplined enough to stay in the room running treatments, when I just wanted to sleep in the sun.<br />
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The holiday was chil out time, time to relax and do not very much and belive me I feel better for it. (photos to follow)<br />
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And Saturday morning, the parentals are taking themeselves, me and my niece to devon for a week. Again change of scenery. but should be some good bonding time.<br />
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So right now, I am working hard on clearing my room. I never seem to be on top of it as I am never home. Its starting to look good now and I cant wait to be able to move around it properly.<br />
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It truly is the little things. I appreciate them a lot at the moment. The holidays, the time with family, relaxing. So whilst I know that the future doesnt look as bright as it once did, I know that the current time and the past are exactly how the should be, enjoyed, remembered and never discount the small things.<br />
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(I actully feel asleep whilst writting this, before posting it. Posting it now, but I am back from Devon, update to follow shortlyish.)<br />
<br />Bitter_Angelhttp://www.blogger.com/profile/04575126047702158106noreply@blogger.com0tag:blogger.com,1999:blog-4652993880806216821.post-25562814154411613162014-05-01T01:52:00.000+01:002014-05-01T01:52:08.825+01:00wonderful time to be aliveIm a bit of a geek for saying this (and I may have said it before) but it is such a wonderful time to be alive. The rate that technology advances and the things you can do with it, never cease to amaze me.<br />
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I am part of what may one day be called the last internet less generation. I grew up without it, learnt to survive and research and work using books and pens, the tradational way. And so, I am still highly appreciative of the internet and all that can be achieved by it.<br />
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For example, how easy it is to view and find information. Walking around the local town and wondering about a building or a place, that I have wondered for a long time, these days, I just get my phone out and within seconds I can find the all the information I could ever need on it.<br />
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I go to buy something but want to know if it works or if it is the right price, seconds late I know the answers. I feel that I have learnt so much over the last few years, simply by being curious and having access to the web.<br />
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So much revoloves around it. Friends, social, games, shopping. It amazes me how easy it is to access any information.<br />
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Ah, im being a nerd, but sometimes, that can be a good thing. The whole taking pleasure in the small things. The small things are what count. I love advancments, and science and progress.Bitter_Angelhttp://www.blogger.com/profile/04575126047702158106noreply@blogger.com0tag:blogger.com,1999:blog-4652993880806216821.post-85764573187176558002014-04-26T00:19:00.000+01:002014-04-26T00:19:03.335+01:00in out away and back again<div class="separator" style="clear: both; text-align: center;">
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6 week interval between posts isn't bad for me. But, I will say this, what a few weeks it has been. Ive had sick time, fun time, exploring, bonding, near 999 call, more sick time and just generally other stuff inbetween.<div>
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Best place to start, always at the beginning. When I last wrote, I was avoiding an admission by taking oral antibiotics. You guessed right, they didnt work and so I was admitted. It was just under 2 weeks the admission, on a new ward, which I fell in love with. The staff were wonderful, much more equipped for dealing with my age group (its a cf specialist ward) not to mention much better facilities such as fridges and an patient kitchen. There was some talk about if I were allowed to stay on the ward due to my trach, but then, non of the wards are really equipped and so they agreed that while I was well, I would be allowed to continue on this ward, as long as I was able to be seen from the nurses station. I had a lot of trouble keeping lines, they agreed on putting a longer lasting line in, but after 24 hours it was tracking up my arm and so it had to come out. For the remainder of my admission we fought with cannulas. Towards the end of the 2 weeks, I was starting to feel worse again and sleeping alot, but I also had a holiday booked with my niece and so, I was discharged late on the Friday and flew early Saturday morning. </div>
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The holiday was great. Lots of food, nice drinks and wonderful staff. We saw lots of sun, hired a quad bike and toured around a lot, played with nerf guns and just generally lazed about having fun. After shooting some of the bar men with the nerf guns, we bonded well with them and spoke to them a lot. One floor in the hotel wasnt being used due to being low season, so we played there and were able to play with the guns without bothering anyone. Neither of us wanted to come home.</div>
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But come home we must. I had been getting gradually sicker and the plane journey near finished me off. So much in fact, that about 10 mins away from home on the drive from the airport, I began coughing and couldnt stop. The crap off my chest had built up during the dry flight, not to mention that I didnt get time to grab a drink due to an annoying easyjet ground crew, who even asked if I were a heavy smoker, but whole different story there. While coughing, the stuff on my chest, instead of clearing, kept blocking off my airway. Panic all round, whilst I refused an ambulance, determined to clear it, but deep down, the longer it went on, the more I began to panic. My history has taught me to stay calm and think rationally and it was this, that after about 45 minutes of work, allowed me to clear my airway, without the need to a&e. </div>
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Retelling the tale the next day to clinic though, we decided it would be best to come in and hammer the IV medication again. Its no been just over a week I have been in and I am as yet to feel the benefit. Physio can hear stuff finally starting to move, but I am just sleeping tons, so fingers crossed that something gives in the next week and I can begin to feel alive again. </div>
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In the mean time, I am running literally hundreds of nebs a day. Morning an evening 6 at a time (atrovent/bricanyl/7% saline/regular saline/Dnase/tobramycin/Budesonide)Plus 3 lots 3 times a day. My last admission also showed I was growing ecoli in my lungs, so I now take a med when I eat to try and stop that. But, I have plenty to keep me busy and I am just making the most out of my time away from hospital. </div>
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Bitter_Angelhttp://www.blogger.com/profile/04575126047702158106noreply@blogger.com1tag:blogger.com,1999:blog-4652993880806216821.post-66117383378850928482014-03-12T00:33:00.000+00:002014-03-12T00:33:05.967+00:00I be backAh, so you may or may not have noticed that I am back! :)<br />
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Court went well, with no problems like I have had previously, but this isnt some place where I can discuss that.<br />
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Aside from that, I actully put my blog back a while ago, life has just been a bit hectic, which is actully a really good thing.<br />
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In the last couple of weeks, it feels like the mist around me has finally lifted. There are many reasons for this, I think, such as medication levels being played with, time away from hospital, the court case being over. Thats not to say that my mood and such is perfect, but it is way better than it was a few months ago. Over Christmas and probably before then, I was feel very fragile. I had given up hope of things getting better and I was filled with resentment and no real purpose or goals in life. My time seemed to be come home, rest and get over surgery, spend a few days catching up on things like paper work, laundry and appointments. Book my next round of transport and hotels and then go back for surgery again. I had such high tolerances to the pain meds, that coming around, morphine no longer even touched my pain and I was needing IV ketamine followed by oral ketamine.<br />
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Now I am being careful not to blame the hospital to much, else I will end up dreading my next admission, but over the last year so much of my life has revolved around hospitals, admissions and appointments, kinda like a bad relationship. You dont realise just how much it has been taking out of you, until its suddenly not anymore. But that is no reason to never have relationships again. Or at least that is what I am telling myself.<br />
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But little things are slowly changing and I am being careful not to change them all at once, else I know I wont keep it up. I have cut down a lot on the junk that I was eating, hoping to lose a bit of weight, but we shall see. I am eating healthier and slowly trying foods that I wouldnt even try not so long ago. I ate red cabbage the other, I have started drinking tea (typically british, though I prefare lose leaf earl grey, black with just a touch of sugar) This week I have started drinking espresso, which is something that I never thought that I would be able to drink, but I am actully liking it, it gives me a bit of a boost when I have no energy. I am eating a lot more fruit and though I still love my truck (scooter) I am pushing myself to walk further. I still get out of breath and I get lots of disgusted looks when I have a coughing fit, espcially when I find myself having to stick my head on the side of a shopping trolley, to keep my balance while my muscles cramp from the effort, but thats people for you and to be honest, if I heard someone coughing like I do, then I think I would stay as far away as possible. That being said, someone did tell me I was disgusting the other day and that I should go outside. I was in a pub having food with my parents and I just couldnt help it. Kinda ruined the mood, but again, some people suck.<br />
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I am working on updating my wardrobe and have even been out today and bought a few new bits, including a little blazer jacket and some other items that I never thought I would wear. I am getting to that point, where I am too old really to wear hoodie jumpers and though they will always remain my go to comfort items, on days I feel up to it, its nice to wear something a little bit more classy. That being said, I am not ready to give up my jeans just yet. And of the course the most exciting thing about losing a little weight is getting back into my jeans that became to tight during my long admission.<br />
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hmm what else am I changing. Well, I am trying to go to bed earlier, doesnt always work, like tonight for example, but I used to make sure that I started my nebs by 1am, now I have pulled it back to 11pm (they take about 2 hours to run), though may work on getting it earlier once I find 11 easier. I have started setting my alarm clock for 10am and being out of bed by 11am. This week, I am working on getting over my fear of showers so instead of having a bath of a night time, and always putting it off so it ends up being about once a week, I have now started having one as soon as I get up, everyday, unless I know I am going to be out all day. If I am going to be out most of the day, I dont have the energy. It also means that I am dressed before 12, when normally, I would spend most of the day in my pjs. Overall I guess I am just feeling more alive and I am so thankful for it.<br />
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I am still working on moving my room about, always knew it would be a big job, but so far, gotten rid of so much stuff and it is not only nice to use but easier to keep clean. I promise pics once its done.<br />
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As for hospitals, right now I am avoiding an admission. I have just finished a 2 week course of cipro antibiotics and though I began to feel better on it, within 3 days of finishing them, I ache so much from coughing that I am hitting the painkillers again. The hospital, after many messages back and forth have decided to fit a port in my chest, to make IV meds easier, I am also hopeful that this will mean that I can run the meds at home instead of having to go into hospital. Fingers crossed on that one. They are also going to arrange some more sleep studies, to see if there is anything they can do to help my energy levels. I virtually always wake up feeling like I have not slept, I sleep for 10 hours plus most of the time as well as falling asleep during the day and finding it hard to wakeup. They want to look at my blood gases incase there is anything there. I doubt it will show up anything, but I am super thankful that they are still trying to help little moaning me.<br />
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As for London. London these days means two things. First off there is the side of it which I will refer to as medical, which is my appointments. I was there last week, and my trachea still looks red and inflammed, which is why breathing is still hard, but the inflammation also makes it easier to grow scar tissue again. Nothing they can do about that though, as they have already tried blasting it with all kinds. Breathing is still hard and you can hear me come from a way off, talking is also hard and often, I will talk and no sound will come out. It can take two or three attempts to get my words out and even then, only short quiet sentences. They want to try putting a stent in the airway to hold more of it open. I dont know how I feel about this. If I thought it would be straight forward, I would jump at it, but I have had issues with them in the past and the continual chest problems, can also add more problems to it. It could also mean another long admission. If it went straightforward, it would be a week, but complications could make it much longer. There is a possibility of going in in May, but I need to sort some stuff out first.<br />
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Now the other thing that London means, I am going to refer to as educational. Again, I am bound by what I can say, but I am working/helping out at UCL (university college london) on some medical trial stuff. I get to work with a bunch of people there including the professor that I met years ago. Its all very interesting and they are open to me doing as much as I want within the university. Last week I went on a course about research. I will write more about that next time, but it is so wonderful to feel useful again, to have even a slight purpose and who knows what it may lead to.<br />
<br />
I was there last week. I travelled down on the Sunday and stayed with a friend. Spent Monday at the uni, tuesday I went to Camden with a friend I met on my last cruise and Wednesday I had clinic. It was a bit much in honesty. When my parents picked me up again on wednesday afternoon, I looked like crap and couldnt keep my eyes open, but it was worth it.<br />
<br />
<br />
Right now, I am just so grateful so a huge amount of things. The uni for including me, the proferssor for having faith in me, my family for holding my up when I could no longer do it myself and my friends, for not only believing in me, but being supportive, yet truthful, for judging or arguing, even when conversations got hard and must have been difficult for them. For all the hospital staff, from cashiers, clinic nurses, drs, nurses and even cleaners, for treating me as a person and making hospital that little bit less icky. Without all of these people, I am sure I wouldnt have made it this far. And as I begin to rebuild myself and my life around my limitations, I can see that I would not have made it this far has it nto been for them, each and every person, in their own unquie way. So if you are reading this, Thank you. And to my followers, even the smallest of comments, can bring sunshine through a storm, can make you take a deep breath, rethink and retry. right now, I am still in the same place I was a few months ago, but now, I feel happy, like I have control of things and am in charge of my own destiny, no matter my limitations.<br />
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Anyway, long enough and rambling now. (but then name of the blog suggests it)<br />
Night<br />
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<tr><td class="tr-caption" style="text-align: center;">Horsing around in Camden</td></tr>
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Bitter_Angelhttp://www.blogger.com/profile/04575126047702158106noreply@blogger.com1tag:blogger.com,1999:blog-4652993880806216821.post-43661109435414917342014-02-06T02:01:00.002+00:002014-02-06T02:01:53.431+00:00Temporary The main purpose of this entry is to say that I will be temporarily deleting/hiding my blog for about 10 days in the not to distant future. I have something big coming up and previous times that similar things have happened, the media have not be very kind to me. That being said, its easy to google someone name these days and I dont want anything here to end up in a newspaper, still working over the issues from last time that happened. So dont be alarmed if you notice it missing, it will be back.<br />
<br />
Other than that, I continue to plod along. Quitting on the surgery, doesnt mean that suddenly everything is alright. Though I am not spending as much time in theatre and hospital, <i>I</i> have essentially swapped one set of issues for another. Talking is very hard work and my voice is weaker than it has ever been. Breathing is still hard work and the tiredness is always there, not to mention the shortness of breath. I still cough so much that I have frequent bleeds and everything hurts.<br />
<br />
I do in a way miss the hospital. The knowledge that things will get easier. The people I am around, they are like friends and I think that it is ok to miss them. But I am enjoying being out. Finding plenty to occupy my time and lots of exciting research stuff coming up. Finally feel like perhaps I am heading someplace, able to give something back.<br />
<br />
Just taking things one day at a time. And right now, all my energy is going into sorting out my bedroom. It already looks a million times better and there is still a long way to go.<br />
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Today however, i feel asleep on the couch in an odd position and so my ribs are sore tonight. I dont think it will ever fully be healed where they took the cartilage out. But if I can stopp aggrivating it will my cough, all will be good.<br />
<br />
Oh and I have not read in ages, but picked up a new book the other week and now cant put it down. Its the Divergent book, so that is taking up some of my time at the moment. Oh well back to it.Bitter_Angelhttp://www.blogger.com/profile/04575126047702158106noreply@blogger.com0tag:blogger.com,1999:blog-4652993880806216821.post-35449024968756073282014-02-01T23:52:00.001+00:002014-02-01T23:52:51.609+00:00The past (contains abuse)I am pacing myself and still doing well. My mood is good and my health is stable and for that I am most thankful. It makes other things easier to face.<br />
<br />
And example, tonight, whilst watching casualty with my fambo, one of the stories was a girl who had been raped. She didnt think people would believe her, but then confronted with the person who did it, she was like a rabbit in the headlights. She didnt know what to do, where to go, but the fear, you could see.<br />
<br />
I know that it is only acting, but the part was played well and bought back so many memories. It is something I have struggled with for years, still do, but its not something I mention, not something I can bring myself to confront. Mine was differnt, for a lot of reasons, but, I didnt want to go through with charges, because I didnt think people would believe me. And truly, they shouldn't. I would say that I was assaulted, but I could never say that I was forced.<br />
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The person who did it, kept me locked in his flat one night when I cared to much and tried to help him. The night was a very long nightmare, where I almost lost my life more than once. I hurt everywhere from being forcably restrained. A 16 year old girl has little chance of escape from a 26 year old male, yet I tried. It resulted in strangulation more than once. To this day, I still feel that I only survived that night due to trying to be cunning and pretending to pass out in hopes of getting him to let go. I think the final time, if I had waited till I passed out fully, I would never have come around. But it was on the third time that I gave up all hope, that I came to the conclusion that nothing matter because I wasnt getting out ever again.<br />
<br />
Every beat of my heart seemed to bring a new surge of fear and I fought just to take air in and out of my lungs. I stayed in that state of fear and anxiety for hours that seemed like days. (Months afterwards, I made a comment about it (I never spoke about anything from that time very often, even though my family knew, the police had told them everything they knew) about how she thought it was longer than just one night and all I could think of, was that it felt like it. During that time, I stayed awake, thinking and thinking, of ways that I could escape with my life intact. I tried a few methods, but it never ended how I had hoped.<br />
<br />
At some point, he decided that he wanted sex. I said no, of course. But as he continued to pester with sentences such as, I will open the door and let you go as soon as I am done, or I will kill you if you dont, then I can do what I want.<br />
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I didnt say no, I just lay there, trying not to think, trying to space my mind away from it all, trying to slow my heart rate down as it felt like it was making a brewak away from my ribcage. It wasnt hard to get lost, everything hurt so much, from my muscles, to my neck, to my head. It was easy to get lost in the pain. But getting lost is differnt from freezing. I know why I did what I did, but I could have fought more, I could have kept saying no.<br />
<br />
I did get away in the end, after I had been made to wash and change of course. And to wear something with a higher neck to cover the bruising that was begining to replace the red marks. A friend talked me into going to the police, but even at 16, the police officer who came, was distant and pretty much said, you have no chance of a conviction. It was only the persuasion of the person with me, that made me go through with the exam. I remember that day, even though I hadnt slept for what felt like days, like it were yesterday. I remember, even in the police station, sitting on the floor behind the door and pushing myself into the corner. The room just felt to big and I needed the feel of the walls behind me.<br />
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They didnt know where I had gone when they came to look for me, looking through the open door, searching to where I might be, asking each other in the hallway.<br />
<br />
These days, I can look back at it distantly. Dont get me wrong, I have never properly been with a person in a sexual way since, but the fear doesnt push as strong now when I think of it. I still have vivid memories, but they are unlikely to go now and I have learnt to live with them.<br />
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I remember a friend saying to me long afterwards, that she thought that I was making it up for some reason at first. That given my ages maybe I was being dramtic or something. But then, when he confronted me, that I just took on a totally differnt look, one she hopes never to see on anyone ever again.<br />
<br />
That is what it remined me of tonight. I struggled with that for a long time, still do to a point. But gradually starting to come to terms with things. Stopping myself from playing the what if game. Stopped hating myself for things that I did at 16 so much. And although it will never go away, it will fade and become less of an obstacle for me. I think sometimes, I need to remind myself that i need to start forgiving 16 year old me,Bitter_Angelhttp://www.blogger.com/profile/04575126047702158106noreply@blogger.com0tag:blogger.com,1999:blog-4652993880806216821.post-11133897484455232292014-01-30T00:02:00.001+00:002014-01-30T00:02:37.046+00:00Life progressionIm still out of hospital.<br />
Thats not to say that I am better and well, I still have a lot of issues, but right now, they cant do anything to fix things, so I have opted to only go in if things get unbareable or in an emergency.<br />
<br />
I feel like the fog is lifting, that I am getting back to me. I am thinking ahead, tackeling jobs that I have been putting off for months, sorting my diet out. things like that.<br />
<br />
My room has been a mess for so long. I love to craft and love having crafting stuff, but it was never organzied. Now I am working on my room and though it will take a long time to finish, I am taking pleasure in it and thinking about how much nicer it will be to work in once it is done.<br />
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I am taking an intrest in my appearnce again. Fixing my hair (which is oddly still a normal colour), makeup occasionally and wearing things other than jeans and hoodies.<br />
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I am thinking about m diet. For so long, it has been comfort food, with no care for tomorrow. And believe me it has had an effect. I am the biggest I have ever been and boy do I feel it. I dont like looking in the mirror, but my bones and joints are complaining. I am already in such a high risk group for issues with my bones, that I need to take care of them.<br />
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I am thinking of things to do with my time. Craft stuff, charity stuff, medical stuff. So much that I can do, so much that may make a differnce.<br />
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I am sorting out my sleep routine. Getting up earlier (for me) and hoping that in turn will make me tired earlier so I will go to bed at a resonable time.<br />
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Most of all I am itching to go on an adventure. the last few years I have holidayed alone. I like it, you meet so many more people and get to do exactly what you want to do and when. But this winter I didnt go. I didnt feel up to it, and didnt spend long enough of out hospital. But now, it is like my soul has been awakened and it wants to take in as much as it can on this earth. After all, its the memories that keep you alive when all else is crumbeling.<br />
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I know this isnt all hospital related. I have had a med change/increase which i think has helped a lot too. But most of all, it is finding myself and realising that there is more to life that sterile rooms and unpleasntness.<br />
<br />
This last year was horrible. So many times when I didnt think I would make it to see another day. So many close encounters, so many things going wrong. So many embarrassments and nasty procedures. But as the saying goes, that which doesnt kill me, only makes me stronger.<br />
<br />
And so, I am off, to think of some more adventrues.<br />
I havnt donethis in a while, but heres a selfie. and heres to the future.<br />
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<br />Bitter_Angelhttp://www.blogger.com/profile/04575126047702158106noreply@blogger.com0tag:blogger.com,1999:blog-4652993880806216821.post-15845659292968622462014-01-23T23:47:00.000+00:002014-01-23T23:47:18.635+00:00You only miss the sun when it starts to snow<br />
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<span style="background-color: white; font-family: Verdana, Arial; font-size: 13px; text-align: center;"> <i>Well you only need the light when it's burning low</i></span></div>
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<span style="background-color: white; font-family: Verdana, Arial; font-size: 13px; text-align: center;"><i> Only miss the sun when it starts to snow</i></span></div>
<span style="background-color: white;"><i><span style="font-family: Verdana, Arial; font-size: 13px; text-align: center;"><div style="text-align: center;">
<span style="font-size: 13px;">Only know you love her when you let her go</span></div>
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<span style="font-size: 13px;"><b>Only know you've been high when you're feeling low</b></span></div>
</span><span style="font-family: Verdana, Arial; font-size: 13px; text-align: center;"><div style="text-align: center;">
<span style="font-size: 13px;">Only hate the road when you’re missin' home</span></div>
</span><span style="font-family: Verdana, Arial; font-size: 13px; text-align: center;"><div style="text-align: center;">
<span style="font-size: 13px;">Only know you love her when you let her go</span></div>
</span><span style="font-family: Verdana, Arial; font-size: 13px; text-align: center;"><div style="text-align: center;">
<span style="font-size: 13px;">And you let her go</span></div>
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<span style="background-color: white;"><span style="font-family: Verdana, Arial; font-size: 13px; text-align: center;"><br /></span></span>
<span style="background-color: white;"><span style="text-align: center;"><span style="font-family: Verdana, Arial; font-size: x-small;">Before Christmas, I felt like I was losing myself. I did what I always swore that I wouldnt, I lost myself, lost my passions, my loves, my determination. I became my problems, my illness, lost in a world of admissions, tests and </span><span style="font-family: Verdana, Arial;"><span style="font-size: 12.800000190734863px;">disappointment</span></span><span style="font-family: Verdana, Arial; font-size: x-small;">. I could no longer cope, things seemed so bleak and my own company became unbearable. </span></span></span><br />
<span style="background-color: white;"><span style="text-align: center;"><span style="font-family: Verdana, Arial; font-size: x-small;"><br /></span></span></span>
<span style="background-color: white;"><span style="text-align: center;"><span style="font-family: Verdana, Arial; font-size: x-small;">Now, I have had a break from everything. No tests, no clinics, no admissions and no surgeries. I have had my meds adjusted and I have had a few breaks from everyday life. Ive spent time with those I care about, those I love, I have done things that I have been putting off for months and achieved those smalls goals that slowly give me hope back.</span></span></span><br />
<span style="background-color: white;"><span style="text-align: center;"><span style="font-family: Verdana, Arial; font-size: x-small;"><br /></span></span></span>
<span style="background-color: white;"><span style="text-align: center;"><span style="font-family: Verdana, Arial; font-size: x-small;">And now? I am starting to feel like me again. The old sense of pride and hope kicking in, planing further ahead than just a few hours. It feels like the fog is once again begining to lift. Dont get me wrong, I know that I have a long way to go and I know that I cant stay away from hospital indefintley. But thats not the point, I am starting to feel like a person again, a person with a purpose, with a goal, with hobbies and interests. A person who believes that there are tomorrows to be had.</span></span></span><br />
<span style="background-color: white;"><span style="text-align: center;"><span style="font-family: Verdana, Arial; font-size: x-small;"><br /></span></span></span>
<span style="background-color: white;"><span style="text-align: center;"><span style="font-family: Verdana, Arial; font-size: x-small;">I have had the best birthday that I have had in years. I went out for a meal with the parents, visited a friend in London, went on the Harry Potter studio tour and saw Wicked in the theatre. I had deep conversations and realised things for myself. </span></span></span><br />
<span style="background-color: white;"><span style="text-align: center;"><span style="font-family: Verdana, Arial; font-size: x-small;"><br /></span></span></span>
<span style="background-color: white;"><span style="text-align: center;"><span style="font-family: Verdana, Arial; font-size: x-small;">I attended a medical conference, that came with bad news, yet also spoke to some people, that give me hope. Refound my purpose towards my future.</span></span></span><br />
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<span style="background-color: white;"><span style="text-align: center;"><span style="font-family: Verdana, Arial; font-size: x-small;">It was all completely exhausting and I had to pace myself. Breaks to allow my lungs to rest after walking for a certain amount of time, sleeping and sitting still on days following active days to allow my muscles to rest. Good company and good food. </span></span></span><br />
<span style="background-color: white;"><span style="text-align: center;"><span style="font-family: Verdana, Arial; font-size: x-small;"><br /></span></span></span>
<span style="background-color: white;"><span style="text-align: center;"><span style="font-family: Verdana, Arial; font-size: x-small;">And now I am home. I have a new determination, I dont know how long it will last, but right now, all I can say, is exciting things are happening for me. Maybe small and silly things, but each step forward is an achievement. And it feels good to feel something other than sad. </span></span></span><br />
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<span style="background-color: white;"><span style="text-align: center;"><span style="font-family: Verdana, Arial; font-size: x-small;">Photos to follow at some point, but tonight, I am hopeful and thankful. I may have some crappy circumstances, but I am so so lucky to be where I am, how I am, with those I love around me. </span></span></span><br />
<span style="background-color: white;"><span style="text-align: center;"><span style="font-family: Verdana, Arial; font-size: x-small;"><br /></span></span></span>
<span style="background-color: white;"><span style="text-align: center;"><span style="font-family: Verdana, Arial; font-size: x-small;">You dont realise how low you have been feeling, until your not so low. </span></span></span><br />
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<br />Bitter_Angelhttp://www.blogger.com/profile/04575126047702158106noreply@blogger.com0tag:blogger.com,1999:blog-4652993880806216821.post-20332700185850866072014-01-13T02:26:00.001+00:002014-01-13T02:26:50.822+00:00aw heckI keep forgetting to write. Well not so much forgetting, in that deciding not to for various reasons. But writting used to be healthy for me. The place where I got things out and stopped them building up inside. The place where I could admit my shortcomings and it wouldnt matter how negative I was about things because it was my own place. I am finding that I need that place more and more these days.<br />
<br />
To follow on from my last post, I had more more admission left before christmas, before an extended leave from all things hospitals. Well, I manage that admision, came through it relativly unscathed and gave myself a firm pat on the back for surviving in one piece.<br />
<br />
Waking up the next day after theater is always a wonderful feeling. Being able to breathe and talk with nothing holding me back. Little things like getting the tube without having to find the route with the least stairs or the fewest steps, timing the carriages to pick the one most likely to have seats. And feeling awake, more than anything. I spoke to my surgeon the day after and I mean really spoke to him. I told him how I felt, that I didnt see the point in going back an forth to surgery all the time, that things were unlikely to improve so why delay the enviatble. He pretty much said that he thought there was still reason to be going on, that things were in the pipe line that could help and that he wouldnt allow me to give up yet. At the end, he put his hand on my shoulder and told me to hang in there. Though I appreciate what he said and his determination to fight for me, it contradicts what other doctors are telling me, leaving me with the sense and feeling of, being lost.<br />
<br />
That aside, I was looking forward to a nice long period of staying out of hospital. That was until I ended back in via A&E again. Slightly differnt problem this time, although I could breathe enough, I was feeling restricted, but the main concern was that I coughing up a fair amount of blood. Now a little blood doesnt bother me, I have crappy lungs and small bleeds are common, but this was more than that and so I agreed to phone the ENT team close to home, who immediatly told me to come straight to a&e. Where upon, before they even looked at me, they admitted me.<br />
<br />
The consultant came in to review me (at 10pm because he had been elsewhere and obvisouly mustnt like going home) with a concerned look on his face. He scoped me, could see lots of inflamtion and remains of blood. told me he had a low threashold for taking me back to theatre. I was booked in for the following afternoon, just incase, put on to nil by mouth, had blood crossmatched for 8 units, given 3 types of IV antibiotics, set onto the highest humdification and oxygen and lots of fluids pushed through to keep me hydrated. Needless to say, I didnt sleep much, between all the prodding, setting up the equipment and untangeling myself from all the leads everytime I needed to pee, which was frequently given the way the fluids were going.<br />
<br />
After a couple of sitting still, things began to settle and so on the 21st December, they agreed I could go home. Of course there was plenty that needed to be done, so the sitting still didnt last and the bleeding restarted, but I was determined not to be stuck in hospital over Christmas plus we were going away for christmas and so I just got on with it, keeping it to myself.<br />
<br />
Christmas went well. I went away with my parents, nice to have someone else to the cooking and cleaning. We went to a ball, so it was nice to dress up Other than that, lots of quiet family time, which I was most appreciative for.<br />
<br />
Since then, the bleeding has become a thing that comes and goes. I have a bad couple of days followed by a good couple. Its not something that i am concerened about. My infection levels are pretty low at the minute, so other than the tiredness and occasoinal pain, things are good.<br />
<br />
I have seen my GP and had my anti depressant meds increased. I ama hoping that this is something that will help, because I do feel like I am going slightly crazy again, which is never a good thing. Twice this week, I have come very close to some old habbits of harming. I know how slippery that slope is and once I start, I know stopping will be next to impossible. I am fighting this with all I have. But in truth, things are messy. I find myself up till stupid oclock, because I cant stand that time when your brain thinks to much, between deciding to go to sleep and actully falling asleep. I wait till sunrise, when things are lighter and feel safer. My mind clouds up with all the dark feelings and thoughts. I think thoughts of treatment run in the same line. I replay various scenarios over and over in my head and find myself bouncing between 2 opposite ends of the scale. Part of me wants to get better. To do all the things I planned. Uni, carer, job, friends, independant livining. And the other part of me dreads so much just waking up again the next day. The thought of slogging through more of this time, the pain that goes with it included, living each day, living each moment, makes me just want to run and scream. But I keep telling myself, one day at a time, one foot in front of the other, thats how I get through this. and so it goes on.<br />
<br />
But things should settle soon. The moods ease into a pattern. Life to continue.<br />
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Its like over the last year, I have lost who I am.I have given in and become my illness. And that is one thing that I have always hated in others. Your illness shouldnt define you. And that is why I want this time off. To rebuild myself, to become me again and to give life to some old projects, things that are me, away from the stigma of illness and all the thoughts that go with it.<br />
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And that is my update for now. Time to keep thinking og more shite to moan about.Bitter_Angelhttp://www.blogger.com/profile/04575126047702158106noreply@blogger.com0tag:blogger.com,1999:blog-4652993880806216821.post-13552731958812971742013-12-07T23:51:00.001+00:002013-12-07T23:51:27.105+00:00going slightly crazy.The last month has been one of the longest I have had to go through in so long. I have scraped the bottom of where I stand, faced a few truths and evaluated where I things are.<br />
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I am home and sleeping in my own bed, for what feels like the first time in months. In truth its only been about 6 weeks, but the fact that 6 weeks isnt a long time to be away for, shows where things stand.<br />
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After hoping to be discharged from London, I knocked heads for the first time ever with my consultant. I was feeling pretty grim, my mood had bottomed out and for the first time ever, I actully begged my parents to come visit because I just couldnt stand my own company any longer. I mean when have I ever been clingy. Now is not an ideal time to start.<br />
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The consultant said there was no way he could discharge me, as my airway was a mess and without imediate treatment, I was in danger of dropping my oxygen levels again. there are only so many close calls you can go through before your luck runs out. I couldnt stay so far away from home any longer though. After about 40 minutes of negotiating, I talked him into letting me be transfered to a hospital closer to home for IV antibiotics and I will be readdmitted on Monday for surgery.<br />
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I used to deal with these things, these complications, like they were nothing. Take them in my stride and make the most of what I can. But these days I seem to be a shadow of my former self. This year I have spent more time in hospital than I have at home and the cracks are begining to show.<br />
<br />
Mentally I am struggeling, and what terrfies me, is ending back up in a deep depression like I had a few years back. I just bearly made through the last depression, and only then due to friends and hospitalisation. Now, things are much more complex and to lose control, however briefly, could be much more disastrous. These days, I have much more access to harmful things like medication and its not uncommon for me to be home with direct venous access to my heart. I dont want to get tot he phase where I no longer care, to be at that point, would be too late.<br />
<br />
But its not just mentally. Physically, my body is no longer able to keep up. When I first started treatment, I used to be able to travel to London, go to theatre and return all in the same day, now it is closer to 5 days from home for the same thing. I have many more complications, much more infections, more chance of things like clots.<br />
<br />
So after this admission, the aim is to take 6 months off from treatment. I am not niave, I know what that can mean. I will get more breathless, I will lose my voice, the infections will get worse and my airway will scar up. After 6 months I have agreed to review things, but chances are nothing is going to have changed and so I dont think we will restart treatment. Delaying the inevitable seems pointless.<br />
<br />
I used to compare myself with others, used to think, I cant be that ill. Ill people have lots of A&E trips, lots of rides in ambulances and lots of complications. I never had them. But this year, things have changed a lot. The amount of trips I have done this year via ambulance is just silly and thats without counting the ones I have talked myself out of. Its at the point now, where A&E staff actully remember me and the equipment I need to keep close to home has doubled.<br />
<br />
So I am looking forward to some time off. Some time to regroup, to heal. to find myself and evaluate at this point, what I want to achieve. I always beleived that I could be anything and do anything that I put my mind to, but even that now seems to far away.<br />
<br />
So I am taking a step back. Seeing what things take my intrest once again. Finding myself and rebuilding what is important. It is the only way i know at this point to save myself. But what that will mean long term, may not be as viable with a long and healthy life as I may have orginally hoped.<br />
<br />
To say that I am not sad, would be a lie, but I know that I went with the right options from the start. I still lie my money with my current surgeon for one day fixing the issues I have and I am still part of the research comitte that is looking at treatment for tracheal issues. I play a fairly important role, on a trial streering comittee at present, which is something that I am very proud of, given that I dont actully hold any qualifications.<br />
<br />
But more of that some other day. Right now, its nebs and bed, as my airway is still misbehaving, I am needing to sleep lots.Bitter_Angelhttp://www.blogger.com/profile/04575126047702158106noreply@blogger.com1tag:blogger.com,1999:blog-4652993880806216821.post-67640711855057136712013-11-28T03:04:00.001+00:002013-11-28T03:04:44.883+00:00Messy <p dir="ltr">The last few days have been a roller coaster of emotion that I am only just beginning to come down from. I feel that I have been balanced on a needle point, starring into the abyss.</p>
<p dir="ltr">Pure fear and exhaustion is only just leading me to review my stand on things and is leading me to question everything.</p>
<p dir="ltr">What I'd risk, and how much an I prepared to risk in hopes of small gains.</p>
<p dir="ltr">I have a lot of choices to make over the next few weeks, one that could change everything. But right now, my nerves are raw, my heart heavy and my head Cloudy. As my body recovered from a new round of torture and I examine what is left of my soul. I have to wonder. will it all have been worth it in the end.</p>
Bitter_Angelhttp://www.blogger.com/profile/04575126047702158106noreply@blogger.com0tag:blogger.com,1999:blog-4652993880806216821.post-38771676994984387782013-11-20T21:23:00.000+00:002013-11-20T21:23:02.038+00:00Another life down..From the very start of my medical escapdes, my mum has called me a cat. to her mind, I have lives like a cat and that is how I have dodged so many potential life ending events. From emergency transplants, to respiratory arrests and chances of brain damage. Well, if that is so, last week I managed to dodge another bullet, though it seems fairly boring compared with some past misadventures, it is still taking its time for my head to get around it and work through each detail.<br />
<br />
That being said, god knows how many lives I have left.<br />
<br />
Continuing on from my last entry, I went home with the tube stitched into place close to my collar bone. The aim was set to try and form a new place that the tube would sit more happily. The surgeon declared that where he put the tube, was in a nice strong part of my trachea and he had no doubts that it would support the tube.<br />
<br />
So a week later, off I toodle to London, still high on painkillers, for them to check things, take out the stitches and change the tube. All of that actully went without problems. I was only in the waiting room a few minutes, my favourite clinic nurse took me through and prepared the room and my less than favourite surgeon checked my airway. He said below the tube looked perfect, when I asked about above the tube, he just mumbled something about inflammed, but would say little else. I gathered it would be inflammed, given that any movement was still agony and I was having to carry morphine around in my handbag, just to be able to get on with things and drink without crying.<br />
<br />
So tube changed, spent a few hours in London, including KFC for chips soaked in gravy and Harrods to marvel at the overpriced christmas tat.<br />
<br />
The next morning I awoke, to find that my trach tube, was not quite sitting in my neck properly. After further exploration, I found that about half of it was sticking out my neck and only the ties to hold it in place were stopping it from coming right out. I tried to push it back in, but to avail. I also noted, as I paced around the house trying to think who to contact first, that I was getting increasingly breathless, to the point that it was getting dizzying.<br />
<br />
That decided things. An over night bag was packed and off I toddled to the wonders place of A&E. Given that my breathing was effected I was seen pretty quick. Soon I was under the care of the ENT team and though the doctor seemed a bit clueless, I had to trust that he knew what he was doing, else he wouldnt be a doctor. It was declared that there was no way that tube was going back in and so every cupboard in the hospital was raided for trach tubes. After trying at least 10 differnt ones, I begged him to just secure my airway somehow and ship me off to London. That wasnt really an option and so after calling his boss, they found some sort of ancient tortore device/ tube like thing, that was flexiable. This allowed him to insert some of it into my airway and secure it in place. Leaving me with a rather attractive trunk, where about 30 cm of it stuck out my neck and just hung there. To be honest, rather than a trunk, I was more reminded of a an animal on heat, as if parading for all to see. After swopping various jokes with my dad abotu being able to have better aim when blowing malteasers across the room and the benefit of being able to wear poloneck tops again, it was decided that I was to be transfered to another hospital. One that I had never been in before, but it was the only one with anesthtics on call all night should I need them.<br />
<br />
Dad went for subways, as we had had no tea. My chicken, bbq sauce and cheese sandwich somehow turned into a steak and chesse sandwich that we shared. Though after one bite I had a big coughing fit, so by the time I got around to eating mine, the ambulance crew were at the end of my bed mumbeling about how good it smelt.<br />
<br />
So then there was a mix up at the other hospital. The nurse on charge was on a power trip, declaring that no way had a bed been saved for me. Cue me back in resus and waiting ent to check me over. Turns out there was a bed after all and by about midnight, they let me go to it.<br />
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I was exhausted and knew nothing about the ward, but the staff where nice and it seemed clean. I took my meds got into my PJs and got into bed. When my obs were done, it turned out my oxygen levels were a little low. So they tried to clear the tube, but could not do much with it.<br />
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Around this time I drifted off to sleep. The nurses checked on me a various points, but despite increasing my oxygen supply, my body was getting lower and lower on what it had. At this point, my memory comes and goes, due to my brain switching off.<br />
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A dr came to the ward and after checking the tube, found that my body was yet again trying to push the tube out. In doing so, it had blocked most of the tube. She decided that the best option would be to change the tube. The first tube came out no problems, but the second tube refused once again to go back in. My trachea inflamming as it does, was giving me a lot of pain and whilst the dr was trying to get another tube in, my oxygen levels were once again falling.<br />
<br />
This quickly turned into a full emergency and the next thing I know my bed is surrounded by doctors. As I was obvisouly more concerned about asking if I should remove my tshirt and put a gown on, or that I only had one name wrist band when theatre require two. Well cant say I am not level headed in an emergency.<br />
<br />
They managed to cut up some suction tubing and to get that into my trachea to keep it open. Whilst I held the tubing steady, we did a high speed run to theatre. Good job it was only 5am, else we may have run some people over. Straight into theatre and they start trying to get tubes in. They found one that half went in, all the while talking to me, doing that annoying thing from films, stay with me, like you have a choice about going. At which point they decided that they needed to push the tube in with force, else it was likely that my heart would stop from lack of oxygen. They pushed and pushed and just as I could bear it no longer, tears streaming down my face and trying to scream in pain, the anesthtic doctor knocked me out.<br />
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Things were very disorientating, when I came around. My mind was in fragments. But the general gist of it, they got that tube in and managed to get oxygen back into my body before any lasting damage was done.<br />
<br />
The tube currently sticks out my neck by about 10cm and is stiched in in 4 places. I need to keep it permantly humdified else it will block. It has also required adjustment a few times since its insertion. That was Thursday. And there was talk of emergency air lifting me to London. But luckily things stabalised and as I reach the week mark, I am now safe enough to be transported to London in an ambulance. Though, its never that simple. The ambulance will only take me, if I am acompanied by a surgeon and an anesthtits incase of any problems. Thats a lot of man hours and nhs money. But there are no other options right now and so that is the plan for friday.<br />
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What they will do once I am back in London, I have no idea. Is the solid part of my trachea is now messed up, then what options do I have. Once again, whilst flashbacks from last week still haunt me, I am left with questions concering things like, will I get out of hospital again? I nearly didnt get to see this christmas and though I tell my family I love them all the time, I have since given them all an extra tight hug. I dont know what next week will hold. I have to take it once day at a time. Stay stable for transfer. Complete transfer and then, who knows. Slow and steady wins the races. But I do wonder, how many of those 9 lives do I have left to play with.Bitter_Angelhttp://www.blogger.com/profile/04575126047702158106noreply@blogger.com1tag:blogger.com,1999:blog-4652993880806216821.post-59855202362441475622013-11-11T00:11:00.000+00:002013-11-11T00:11:07.541+00:00Part 3 at last.Well part 3. Who knew it would take me so long to be able to write this up. Perhaps this is why I dread writting in here any longer. Things get complex and I begin to rmable and the entry suffers by getting longer and longer.<br />
<br />
So Monday I was admitted to hospital and Tuesday I went to theatre.I spke to my surgeon in the anesthtic room, where I usually seem him. He said he would like to have a try with a T tube. Which is kinda what it sounds like, the tube is shaped like a T, with the long piece coming out of my neck where my trach currently sticks out. The thing being is they tend to block easier and are a smaller opening. I had a lot of trouble with it last time we tried.<br />
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We are short on options, so we decided to go with the usual steam of laser and dilation and anything else he thought may help whilst he was there. With the aim that in Januaury, we will review things and review the T tube again.<br />
<br />
With that, they knocked me out with the gas, as they couldnt get any lines in so they were going to do it once I was out of it. Good job really, I came around black and blue where there had been at least 7 attempts, plus at least one tissues and flooded the skin instead. I had one cannula in place in the end, down the back of my wrist and up the inside of my thumb.With many many layers of tape on it to support it.<br />
<br />
But none of this I took in at first. The first thing I remember wastrying to scream in pain. I never scream in pain, but this was intense. I also have very little vocal function right after surgery and so my scream was probably more of a squeak. They gave me pain meds, then doubled what I had, but I was still unable to breathe properly through the pain. I was panting, hands clenched into fists. It was exhausting and trying to make myself heard, was frustrating. It was almost as if they didnt believe I was in pain. They kept saying things like, you have had all we can give you, so you just have to wait now and we will get you back to the ward. The thought of being stuck on the ward, were I wait hours at best for pain meds terrfied me even more. But I felt so vulnerable, so just noded in agreement. The recovery staff kept speaking to the ENT team who increased things for me. She came to check on me at one point and just said, you do not look comfortable at all, at which point I just broke down, at last someone was listening to me. I almost begged her to knock me out because I couldnt deal with it. I have done painful procedures, but this was only meant to be laser, easy surgery.<br />
<br />
At last pain was under control and so recovery rang the ward for them to come up and collect me. And this is where the wait hit in. They did this to me last month. They kept me waiting two and a half hours last month, because they were too busy to come and collect me. Sitting in reocvery for a prolonged time is so frustrating. There are no toilets, so you have to cross your legs or go down the bed pan route. Then you miss your meal, because your not on the ward and once they have phoned the ward they cant give you any more pain relief as the ward could come at any time. This time I waited just on 2 hours. Same nure again. I get on with all the staff apart from this one nurse.<br />
<br />
Finally on the ward and my pain was building up again. No sign of my nurse, no one could find her. My pain levels were reaching maximum and I was feeling like crap. I came so close to just packing my stuff up and walking out. My thinking was that at least if I were at home, I would be able to control my own meds. Just then, hand over staff came on and as I say, I know most of the staff now, they know I dont complain, so walk in on me with tears streaming down my face, mutttering about self discharge. The nurse soon figured out that it was pain that was driving me that me and within a few minutes, she had gone and goten my pain meds. Even though she should have been in handover she sat with me for 20 mins while the meds kicked in and my heart rate came back down. I have never been like this before. I have never needed anyone, but then I had never had pain like it and I admit that the whole thing scared the crap out of me. As has the following week really.<br />
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Wednesday I spoke to my team fully. They are still shocked at just how much my airway scars up and closes in the short space of a month. They know that in between I have no real quality of life. I guess that is a subject that has come up a lot recently, quality of life.<br />
<br />
They were not sure if the breathing tube pushing up is causing the scar tissue to appear faster. Though we have tried keeping the tube tied down before, it still tends to break through the tissue or strings. So this time, they have dug a channel out, the lower end of which they think is much stronger than the rest of my trachea.<br />
<br />
They have put the trach tube into this channel and stitched it in several places, very close to my collarbone in order to hold its place. I go back Wednesday for them to see what has happened, with the aim of taking the stitched out.<br />
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Personally I dont think that it will stop the tube heading up, but I am willing to go with it with my fingers crossed. In the mean time however, my pain has lesseend, and yet I am still in a great deal of it. Inside my neck, along my glands and across the front where it is stitched. All causing there own variety of pain. This is making it difficult to cough and to add to the baf, my chest is sore and my chest muscles ache. But fingers crossed that will all settle Wednesday.<br />
<br />
And that brings me to my current issue. In recovery, they pump me full of all kinds, most of which has no effect these days. Morphine, fentanyl and tramadol. And of course the wonderful back up of ketamine.<br />
<br />
But when I am home, pain meds are a little harder to control. There are so many of them that do strange things to me. For example oral trammadol, is like taking smarties, I dont get any helpful effect at all. Other meds like Oxynorm, send me crazy, to the point where I dont know who I am or where I am. This leaves me with my go to meds, mainly oralmorphine. But the side effects get worse each time I use it. The itching was always the biggest problem, but that could be managed with enough creams and piraton. But now, the oralmorphine, leaves me with insomnia. For this admission and to get me through, they have prescribed me some zopiclone sleeping tablets. so I can keep the pain under control as well as getting some sleep.<br />
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But now, I am finding it harder and harder to stay awake. Today, I got up just before 12. By 2 I had gone back to bed and didnt wake 8. Had some tea at 8:30 and proptly fell asleep with my fork still in my hand.<br />
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tonight, I am droping the sleepers, in hopes that I can spend some times awake tomorrow.<br />
And apart from that, heres hoping Wednesday brings good news. for my body can not take anymore.<br />
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And know you know why my writting is so awful. I find myself falling asleep mid typing or mid conversation or just in general. My head cant help but think, is this what the end will feel like? And how long would I hjave till I hit that point.<br />
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I mean, how much and how long would you carry on fighting if there was no chance of change.<br />
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Delieghtful thought to sign off with, but always good to show my brain is still workin.Bitter_Angelhttp://www.blogger.com/profile/04575126047702158106noreply@blogger.com0tag:blogger.com,1999:blog-4652993880806216821.post-89380527879688234822013-11-10T01:23:00.001+00:002013-11-10T01:23:36.806+00:00missing bit part 1So continuing on from last night. I will eventually finish this entry, though maybe not tonight either.<br />
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I have mentioned about spending some time in London to work with a team of researchers. Well, inbetween that, I was able to stay at a friends house. Whats more she even let my niece stay too. Its strange seeing them talk together now. Last they met, my niece was merely a child, but now she is the whole person of her own. I am so increadably proud of her.<br />
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We had aimed to go visit the Harrods Christmas Parade, but the parade was mega early and without huge costs in energy, there was no way we could do it really. So we slept in a little later and still had a fun day.<br />
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The friday, we visited Westfield and I took her past where they do the filming for BBC Sherlock (Its our little obsession together. We often through quotes at each other from it.) As it got darker, we met with my friend and went to watch a firework display. I think it has been a while since my niece has been taken to a display, but she was mesmerised by it. By this point I was getting rather very tired, so I put my arms around her wiaste and my head on her shoulder. She thought I was simply cuddeling her and so we stayed like that for a long time, I do hope that she is able to keep the memory of it being a cuddle, rather than it being her supporting me and keeping me upright.<br />
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Saturday, as I mentioned we missed the parade, but we had to go for a harrods visit anyway. I am a big kid and so we spent a long time sitting playing with the toys. We spent the evening in China town, looking at totoro and other random things. Followed by a night collapsed in front of the tv eating cinnabon. It was very yummy.<br />
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Sunday, she had to get the train back for school, but that left time to visit Camden for some further retail therapy. We even found a a stall selling deeo fried oreos. Not had then in over year, but they were si good. I also bought some new boots (Dr Martens and cant wait to wear them properly) She was back on the train home long before I wish she had to go, but it was an increadbile weekend and I hope to do it again one day,<br />
<br />
So that bring me back to Monday. I had the reaserch meeting and then I was admitted to my usual ward. After spending so much time on this ward, everyone knows me and I end up stuck having conversations with every on the ward.<br />
<br />
Im skipping over the details so not to bored people.<br />
Tuesday morning was theatre morning. As usual, shower and dressed into a sexy gown. Saw my surgeon just before going under. We spoke about future options. He wants to try putting in a T tube again. I sad we have been there and it didnt help.<br />
<br />
He still thinks that it is worth trying and so we are going to review in January. So this time, they decided that the tube is pushing up on the new area and causing it to damage. Really? I mean im ssure I have been telling you that for the last 3 monthsl<br />
<br />
So anyway, banter aside with the theatre staff I awoke and was actually feeling warm, which was amazing as I am usually freezing. But then the pain kicked in and I almost shot out the bed. I was in agony and the heart montores were going crazy because of it. After lots of disscussion, they started uping my pain meds, all the while talking to me like I was making things up.<br />
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Now I am going to stop here again, as I keep fallling asleep mid sentence. but yeah, nothing great and still pretty wired.<br />
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<br />Bitter_Angelhttp://www.blogger.com/profile/04575126047702158106noreply@blogger.com0tag:blogger.com,1999:blog-4652993880806216821.post-51414033674266263592013-11-09T01:09:00.003+00:002013-11-09T01:09:56.374+00:00A reason to be.I always seem to mix the good with the bad. It softens the blow so to speak, but of course the problem with that, is that the good doesnt get to shine through quite the same.<br />
<br />
It has been a long week and so I am going to start from the middle, for where is a better place to start than right there.<br />
<br />
I am not sure if I wrote a while back about a committe I had been asked to join. I now can not write to much, but to give the basics of it without breaking protocol, there has been a huge funding investment made into regenative medecine. This is the area that my surgeon is hoping to work on and the reaserch could change everything.<br />
<br />
To try not to be over dramtic, it is looking at the use of stem cells and the ability to grow new things from them. Now where this concerns me, is that the first places this has been used, is in the area of tracheas. It is a technology that one day, could mean that no body has to go through the issues I am having. That a new trachea could just be grown for them. And to go even deeper, it is a technology that one day maybe able to be used to grow anything a person needs. Be it an organ, some tissue, an eye or even a lost limb. The possbilities are endless.<br />
<br />
Now I do need to be clear on one part, and that is that I am unlikely to benefit personally from this technology. The first patients are being selected and I can not be one of them due to the complexity of my body and medical hisotry. But, I get the next best thing. I get to work with the top doctors and have a voice in steering the way the work goes. It is a big respobility and yet one that just feels wonderful. To think that no one else will have to go through this pain and waiting whilst being unable to breathe.<br />
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And that really is about as much as I can say on it, as its all very confidential.<br />
<br />
However it did mean that I was in London this weekend for a confrence, which went well.<br />
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I did have more to write, but I think I will come back and finish tomorrow, as my arms are not up to typing tonight. But yes, exciting times in the future are to be had.Bitter_Angelhttp://www.blogger.com/profile/04575126047702158106noreply@blogger.com0tag:blogger.com,1999:blog-4652993880806216821.post-81316611688848334722013-10-26T00:23:00.001+01:002013-10-26T00:23:37.509+01:00The balanceAfter such a dour few posts, I thought it was time that I changed course. Enough pouty pitty me, I hate pitty and I think that I may have lost myself lately within a realm of bad thoughts.<br />
<br />
So enough of that.<br />
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This week is half term from school and so my niece has been down the last few days. We have been chilling out mostly (I am full of some sort of virus which has left me aching from too much coughing and an inability to move far away from my machinery.) Lots of cuddling up in bed with various films and tv shows on.<br />
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I also carved my first pumpkin of year. I love carving them and have done a couple each year for the last 4 years. My first this year, on request of my niece, is a minion.<br />
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I have been getting back into sketching a little, whilst I am sitting still. This is the last few days musings. I am thinking of putting it to canvas, but not sure who would appreciate it. I love the song rainbow connection (and generally anything muppet related.)<br />
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I took my niece home a little earlier. We were both still wrapped up in our onesies and as I was taking the car, we stayed in them. We sure did have a good giggle about driving down the road, her as tigger and I as eyeore, dancing away in the car to the music. Its moments like this that I will always treasure. I was just hoping that I didnt get pulled over for any reason. Wouldnt really want to get out of the car looking like that.<br />
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Its been a good few days. I feel so blessed to have such good family around me. I always appreciate them, but when I feel run down, I appreciate them even more. My mum has been making me good food, if she wasnt here, I know that I wouldnt have had the energy so just not eaten. My niece has been helping me set medical equipment and such up and my dad, letting me fall asleep leaning on his shoulder every time I sit down. Not to mention the jokes about being a dead donkey, whilst mum laughs at him.Bitter_Angelhttp://www.blogger.com/profile/04575126047702158106noreply@blogger.com0