Life progression

Im still out of hospital.
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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

And so, I am off, to think of some more adventrues.
I havnt donethis in a while, but heres a selfie. and heres to the future.

Busy

I have need to write a long and fun update, I know this blog is long lacking a fun element. But right now, I am tired and I should be sleeping. But I keep putting off writing and if I keep doing it, I will never keep up.

I traveled down to London this week for clinic. I wasnt going to go, seemed pointless as there is much they can do. But then, I thought, London hmm retail therapy? And that seemed like a good idea, so I went for it.

I had a big order of craft stuff to get finished and ideally I wanted to drop it off whilst in London as it would save me on postage and therefore mean more profit. So the few days leading up to London, were hard work. I always put demands on myself for things like that, expect to just be able to do it, when in reality it takes a lot out of me, I just dont want to admit it. But I finished what I needed to at 11:30 the night before. I was fairly proud of myself for getting it done, as my stomach decided to play out and so a large amount of time was spent in the bathroom which also left me feeling wiped out. On of those marvellous after effects of anti biotics, they wipe out your natural ability to fight certain things.

But I took my mum down to London with me and we booked a hotel so we could have 2 days. It was fun. Visiting Camden and Harrods on the first day and Oxford street and winter wonderland on the second day. It was a little frustrating in that I had to give in and go back to the hotel on the first day and have a 2 hour nap. Getting there and camden had wiped me out more than I imagined. it was odd as I love Camden a lot and could spend hours and hours there. Yet this time, from arriving, I was watching the clock and wanting to leave. But, I was able to do some of it and after a long rest in the cafe managed back to hotel.

I am getting to know my way around London fairly well now.
After clinic, we visited Winter Wonderland, which is a big market in the middle of Hyde Park. I do love the market. So many nice things for sale, lots of wonderful foods and mulled wine, whats not to like about mulled wine.

There were so many fun things to see and do there including, a carousel bar. It was made to look like an old fashioned carousel with big wooden horses, except the horse were made into tables and the middle was a bar. And yes, it turned the whole time. Only very slow, but turned none the less. Oh it looked so fun. Alas I was the mother and apart from complaining at the price of everything, she gets motion sick and so I didnt get to go have fun. But defo another year I will.

Didnt buy that much whilst in london. Some candle wax and a pair of shoes was about it, though we did have a lovely meal in Prezzo and apart from that, it was nice to spend some time with mum, without the narkiness that usually acompanies time spent with her.

As for clinic, the reason I was down in london ha, well, I am not really sure how that went. Even though I was resigned to the fact that there was no change, my dr insisted on looking down with the scope anyway. Although my airway is open better than it was now I have this other tube in, it is looking very red and inflammed again. This is usually when the scar tissue begins to build up, which is a fact I think we were already resigned to.

He was muttering on about the professor and funding, though, he seemed like he was trying to say something he shouldnt be saying, or perhaps I am just reading to much into it. I think it was about the professor seeking some extra sort of funding or permission and though he thinks it is still going to be 18 months before transplant becomes a viable option, if we go ahead with the next stage of surgery, and put the cartilege into my arm, that dosnt mean my options are closed. If things continue downwards, he is still not giving up.

Its nice that he keeps reassuring me that he isnt giving up, but I dont know. I cant remember if I wrote about when I spoke to him on the subject of giving up. I wrote a big poetic entry about it, but  saved it on to my ipod, then lost my ipod before I was able to post it. (feel free to remind me if i did or didnt post it)

Things are in a big circle. The scaring will continue to form, it however forms quicker the more movement that is put on my trachea. Its possible that the amount of coughing that I do, is part of what make the tissue form so quickly. On the other side, having a trach in, makes me more vulnerable to infection, which makes me cough more.

He wanted to try some new meds or some more IVs but when I told him what I was on and what treatment I have just had, he said you are already under more care than I give you in that respect, but let me know if there is anything that I can help with. I seem to have this effect on my doctors lately. They seem stumped on what to do. My chest doctor, my liver nurse, my surgeon and my gp, all say, tell me what you need and I will sort it. They rely on me these days to tell them when I need treatment, when I need meds and which ones. I know that I am the best expert on my own body, but do I trust myself to make these descisons.

Alas, if all goes well, I shouldnt be in London now until my next surgery at the end of January.

I did want to moan about rest days, but I shall save that for another blog. Arnt you all lucky

Easier

Things are on the up.

Friday night, my GP phoned, my mum spoke to her as I avoid phones due to not being able to get my voice loud enough and crappy hearing.

From what I can tell, she didnt want to prescribe my hypertonic saline nebs to me, until she had spoken to other doctors, due to me being a high risk patient. This is when I had a difficult few years with depression, which is a time I am not very proud of. I am at the point where although I regret the things I did, I also understand them, given the tasks that my mind was trying to come to terms with. Although I hope this time is behind me, I am not niave enough to think that I will never face them again. However, I also know, that right now, I am just working at health with no real bad thoughts getting through. I do hope, that my doctor can appreciate this as we go along and learn to trust me once again.

Anyway, she thinks that the nebs can be abused (though I truly have no idea how as its just salty water) but after speaking it through with the other doctors and my mum, she has no prescribed them. Whilst on the phone, my mum also mentioned that the painkillers she had prescribed were not working and that I was truly struggling to manage the pain. So, I have no been prescribe oramorph (Liquid morphine.) This is a stage that I never really wanted to reach, morphine to me is still something that you should only have in hospital. But, it is working and knowing it is there and being able to take it as and when, means that I am coping with things much better. This makes managing things much easier and I have been active for 2 days on the run, where as I could only be active every other day due to the pain last week.

Next week I should get the results of my CT scan and my cultures to see if I have any nasty bugs growing and any other problems. I expect the CT to be clear and imagine there might be something growing in my chest that will probably require some additional antibiotics. Then, hopefully we should be smooth sailing.

Apart from that, I am keeping up with my nebs and antibiotic nebs, using plenty of humidification and my usual meds and physio.

I have also had an urge to start making christmas cards ha. I am a very last minute person so its good to start now. I have made 3 this week, which I need to photo tomorrow and put on my other blog. Crafting makes me feel a lot better and so I am going to try and do more of it. maybe even look into selling bits. For now i have plenty to keep me occupied. Though, I need to use up some of what I have in without buying anything new craft wise. I am setting myself a challenge (as i just got myself a new set of cutting shapes for my machine) to not buy any new craft things until the craft show in September. And when I go the show, I will set myself a budget too.

Oh and I am also thinking of starting a kind of patchwork cushion using photos on material, but that still needs a little more thought yet.

Happy Easter

Tonight, is the first night I have gone up the stairs walking and not feeling like I had just run a marathon. Lately I have taken to crawling up the stairs as it just easier. It amazes me how much my breathing effects my muscles. On bad days, every time I lift my leg or arm, it feels like I am lifting weights. Tonight, I dont feel so bad and I begun kidding myself that perhaps things were settling.

Today, I took a big step. I used the wheelchair to help my mum with shopping. It did make things easier, and I didnt feel so exhausted that I could cry at the end of shopping. The sad part? It is probably the last time I will be able to use the wheelchair with my mum for a while.

She goes for her surgery on Wednesday. They have decided on a lumpectomy and removal of a couple of lymph nodes. They will then test the lymph nodes and the surrounding tissue to see if she needs further surgery and from there set a schedule for treatment and such.

I often go through phases with music. I find an artist or song who I love, put them on repeat and listen to them continually till I get bored. I hate doing it as I kill the song, but at the same time I love it. Right now, I am spending a long time just resting and listening to Joshua Radin.



I have also been playing with some watercolor paper to make some images.

I wanted to experiment mainly, but I also wanted to make a special card for my elderly neighbor for easter. Ideally, I need to do a little bit more on it in the morning, as I think it needs a little bit of purple in the top right.

What do you think? I should have spent a bit more time on it, but overall I like it I think.



Happy Easter every one.
And as easter is all about new life and beginnings, I hope that it rings true for you all, especially those on the transplant list :)

silly body & Mock invites

I think my body is trying to tell me how much it dosnt like me right now.
Yesterday, I slept for a solid 12 hours, yet woke up so exhausted that every movement took a huge effort. Mum had a hospital appointment, so I went with her to that and then stopped for bread and milk and such on the way home. I was so tempted to just sit in the car, every step felt like I was climbing a mountain.

So, when I got home, I almost instantly fell asleep, for another 2 hours. Had some tea and decided to get working on a sewing project  have on the go. Turn my computer on to look at the pattern and realise, that I can only see half of the words on the screen. Within 15 minutes, I was almost crying with pain from a migraine. So, by 9pm I was in bed with the lights off, which is mega early for me and slept right through till 12 today.

Today has been a little better. Still tired, but nothing compared to yesterday. Still have the remnants of a migraine lingering, mainly with nausea. But then, my stomach is playing up anyway from a combination of painkillers and anti biotics.

But, I need something else to work at. Something that occupies me and keeps my mind busy. My little mini projects are all well and good, but there is never a real deadline and I tend to get lazy. So, my next idea, is to perhaps, start up a small project on the side. I am thinking, of designing things, such as invitations. I have the time to put in and I may put an advertisement up on ebay for them. Mum, has also been asked to make a wedding cake for a friend of a friend, so I am going to try and send some wedding invite samples and see if they would like me to do them.

I have been playing about tonight, and come up with 3 basic designs, but I can think of a fair few others. Having trouble taking decent photos though with just my lamp, but here are a couple of samples.

I was going with a kinda of Burgundy / Cerise color scheme, as that seems to be in around here at the minute. This first one is my favorite.

You cant really make out in this lighting, what the bottom burgundy piece says, but it says perfect day.

Projects

This week so far has been good. Dad has gone back to work after being off for the holidays and because everyone is settling back to normal, they are all tired. This means that, a lot of afternoons are now spent at home, while the parents gently nap in front of the tv, I am able to sit and do things, which is a heck of a lot easier than being out and moving.

My room at present is like a little creativity thing, I have so may projects that I want to do, but I cant seem to stick at just one, so I do buts here and there and play around. But its good, its keeping my mind and hands busy.

Last summer, I began working on a circle skirt that I wanted to make. I cut it all out, though I made a few mistakes and got hald way through pinning it. Since then, it has kinda sat in my wardrobe. I was really struggling to use Mums sewing machine. Its older than me and is a big heavy thing, which made it diffcult to get out and put away, not to mention, it was hard to thread up and such. So for christmas my parents bought me a new machine, a smaller lighter machine, that does nearly everything mums machine does. Well I finally finished that skirt from last summer.

ok, its not perfect, but for a first try, I am pretty happy with it. Its lovely and cool and in the summer, I can wear it inthe garden and such or even put a petticoat under it and have it as a stick out skirt.

I had also promised a friend a sock monkey for christmas,but ran out of time, so I was able to finally get this finished.

I have since made an Elepant, but I am going to redo him a little to make him into a door stop.

I am currently working on two different canvas pieces. The first one, I want to draw on, possibly with a quote and then embroider it, no idea if it will work or if the canvas will just rip. And the second one is that I am having a go a photo onto canvas.

Today, I treated myself to a embossing machine, which takes really pretty paper, though now I keep looking at new plates for it, so many designs to chose from. Shame no one had a birthday coming up.

As for breathing, it feels better and I am managing to sleep of a night, however, it takes me a long time to wake up of a morning. From my alarm going off, to actually being able to get downstairs, is probably about an hour. I tried to speed it up today and be dressed and ready to go out in an hour and 20 mins, but I felt very rough and could not stop shaking. Breathing I can do fine as long as I am sitting, if I walk slow, I get a little out of breath, but if I need to walk fast, I pant. I am also struggling now to carry a handbag with me, the weight of it feels like it is dragging my chest to the floor.

After a while, I find myself getting air hunger, just feeling like I am breathing the right amount, but not getting the right amount, kinda like I want to take a deep breath, but its not coming naturally. Still had no appointment through from London, have to chase it up tomorrow possibly. We shall take things one day at a time and see how things go.

Progress and completion

I could have done without that week in hospital!!
Where has the time gone, Christmas is so close now.

Things have been strange. My last admission, was hard. I struggled the whole way through. I am not sure if it was because I went in nearly the exact same time as I went into hospital last year, but I ended up staying for 3 months last year. Perhaps it just made me reaslise just how vulnerable I am right now.

I have said for the last few months, that I have this odd feeling that I need to make the most out of this Christmas, and that is what I intend doing. I want to make lots of happy memories this year and I want to give the people who mean the most to me special presents, that mean things.

When I was in hospital, at one point, I felt so rough, was in so much pain and so many of my blood tests were out of range that it felt like my body was giving up on me. All I could think of was please not yet. I hadnt had my Christmas. Years ago, when I was stabbed, I made a deal that I just wanted one more Christmas well I got that and then I got greedy. But I am not going to be greedy now, just let me finish everything and have a good year.

Now, I am still recovering, still have a persistent cough and feeling run down. But I am determined that I am not going to let that stop me! There are things that need doing. For example, I had promised to clean my mums carpet, something that has been put off for too long due to me being unwell. So Sunday we got the machine and cleaned right through. Anyone in the UK, who is thinking of cleaning their carpet I really do recommend the rug doctor. Its so much easier than the other home machines and wow it makes such a huge difference. Anyway, that was Sunday and Monday and believe me I ached afterwards.

Monday I also had thoracic clinic with my surgeon. He actually zoomed the xray in properly for me on the screen so I could see. Its amazing looking at my trachea, you can see the narrowing so clearly. I would guess, looking it at, that I am currently on about 50% of my normal. More so than that, I am at 4 weeks now since my last dilation and laser, this is the longest I have gone since my resection! And yes, I do still feel breathless, but I have not hit the point where I struggle to do basic things due to it. This means one of two things. Either I am getting used to the breathlessness or the scar formation has finally slowed down.

I guess the next thing will be to find out where my normal is. From the start, I had hoped that I would end in having a normal airway and be able to breathe the same as anyone else my age. That is probably not going happen and I need to adjust to that. But, right now, I dont have a trach in! I am out of hospital and I am able to potter around. Sure I cant run marathons or even a flight of stairs, but I can walk on flat ground and almost hold a conversation whilst doing it. As I have not had surgery, my voice is the strongest it has been in over a year. It still breaks and I cant adjust the volume of my voice, but I can get my voice across and I even had a phone conversation with my doctor today. So looking good!! (dare I say that?!)

In other news, I have actully finished some of my projects I had on the go! I wanted to photograph them, but my web cam is playing up (boo!) But my sisters scrapbook is 100% done as of tonight. My nephews canvas is finished! and I have made a special christmas card for my neighbor. Oh and I stitched a sock monkey and completed a small cross stitch of a tortoise for my mum. (Must be the first one I have completed in about 3 years)

Yesterday, I also started the project I wanted to do for my mum for christmas. Its turned out great so far and I have completed the main snowman part. Now I just need to try and find a large piece of felt to use a backing, but I am working on that.

Things are going well! I have motivation, I have completed some projects and next week I am taking my niece to London for her 18th! I cant wait. It will be very christmasy in London and its just going to be fun. I am debating on getting my tattoo on the anniversary of my transplant! IfI can afford it I may get it. eek.

Things are going well! This is usually the time of year when I go off on one and lose everything! But I am determined this year that it will not happen. That is one of the reasons why I am keeping busy, but it seems to be working so far.

Leeds 7 Caffeine

Tomorrow, I will ache and tonight I will sleep well.

Today, was my 6 monthly Liver Transplant check up in my transplant centre. Two hospitals monitor my liver, a hospital close to home, so that emergencies can be dealt with and basic monitoring and tests done and St James hospital in Leeds, which is my transplant centre. I was given the option not long after my transplant, of having all of my care transfered to my local hospital, but after many bad dealings with my local, including, missed or wrong medication and unhelpful teams that miss obvious things, I chose to stick with the transplant centre too. Basically, I trust them more and they have more of my surgical history up there. Not to mention, the main transplant surgeon is lovely and often comes to speak to me if I am on the ward up there or if I need any extra surgery such as Hernia repairs. So I am seen in the transplant centre every 6 months and my home hospital every 6 months inbetween, basically meaning I get checked every 3 months.

So this morning, it was an early start (for me anyway) and I had to be up for 8am!! For the drive to Leeds. Sue came with me and we had a laugh, singing to music and drinking energy drinks. Of course got stuck in all the peak hour traffic on the motorway, plus roadworks, so it took about 1.45 hours to get there, no a good day I can make it in 1.15. Clinic was busier than I have ever seen it, in a way this has to be a good sign right? But then, I am sure there is often 4 doctors on, but today only 2. So we were at the hospital for about 3 hours, by the time you do the whole weight, blood pressure, bloods, patient affairs thingy. Everything seems fine and the docs are happy enough with me.

So by the time we came out, it was past lunch time and I was hungry. So we had a quick wander around leeds, got some more energy drinks for the drive back and some chips for dinner and headed back, in the heavy rain. Driving across the Yorkshire Dales, is often chore, as it is one (if not the) highest motorways in Britain, so it usually windy, plus a lot of hills. The weather is often miserable and we have been known to get stuck in thick snow coming across it. This is one of the reasons we have clinic every 6 months landing in November and May, to avoid the worst of the weather.

So I got home and where I would usually be so exhausted from driving and being out that I would need to rest, instead, the caffine I had been drinking all day kicked in and I felt the need to do something with it. My room has been annoying me for days so I began to sort shelves out.

You see, I have this new addiction, I seem to have really gotten hooked into doing craft type things. Again, this was one of the things I used to enjoy doing before the whole depression thing kicked in. Well it seems to have come back again and I find myself either buying craft stuff, or searching my room for stuff. My craft box, consisted of an old shoe/boot box, so every time I wanted to get something, I would have to pull loads of stuff out, or else other items are spread around my room. So today, while out, I bought 2 new plastic storage containers.

I have just sorted 3 bin bags of rubbish and 4 bin bags of clothes and shows I dont want out of my room. My clothes are now folded on the shelf in coordinating piles instead of dumped on the floor or chair and more importantly, my craft stuff is all in a a nice big box (well its in 2 boxes, but once christmas hits, it should go back to one)

It still has a long way to go, but it is a million times better than it was. It is now 1 am and I have been on the go really since 8am. The caffeine has worn off now and I am ready to sleep. Cant wait to see my room finished and looking good for a change :)

Relaxing days

Now my friggin ipod beeps to tell me I have been outbid! grrr, the auction ended 10 minutes ago, bit useless now.

I was bidding on a set of large and very pretty fairy wings hehe. Halloween is just around the corner and this year, I want to do things. Yes I know I am not a kid anymore but I dont care, I just want to do things for the experience this year, I also want to carve a pumpkin. I dont even know if I am going anywhere yet :/ I asked my sister if she was doing anything, as she did have a party once but as of yet she is undecided. So I want to prepare my costume just incase, however, I am on a budget with it so trying to either get things cheap or use stuff in my dressing up box (Yes I have a dressing up box but its small) Anyway, I already have my red hair, so I was thinking of some type of bright, mismatched creature, probably a witch, a fairy or a devil. I have a set of black and a set of red devil horns. You can get wings cheap here at the moment, but they are small and crappy, probably because they are on the kids department but even ebaying isnt offering me cheap ones, except the pair I just missed out on by 25 p grr.

The other things I have, which I am pretty much basing my costume on is a pair of socks. A friend bought them for me last year and they are american little miss mismatch, however I cant find a pic and they are in the wash. Anyway, they are 3 odd socks, all in a bright lime green and pink. One is stripey one has spots and one has stars and they are knee length, kinda like football socks. So I am going to wear them and probably some arm warmers. I also have a wonderful bright multicolored neck scarf thing, but I have no idea what to do with the rest. Any ideas?

I might have some tule that I could fashion into a skirt, but depending on hospitals, I probably wont get chance to do it.

Anyway, I have had a relaxing few days. I have a couple of projects now on the go and I feel better for having done it. This year, I want to aim to making a personal present for most people for christmas, though I havee not yet planned who is getting what hehe. But I have started and almost finished my sisters. I am making her a scrapbook. I cant post too much as I dont know who is reading, but I will give you a preview of one page.

You cant really see the colours on the silly webcam pic, but you get the idea. I am aiming for 20 pages and so far I have done about 15, so yay.

I have also begun on my nephews present. I am doing him a canvas for his wall. I have done the majority of the sketching now, so the rest is pretty easy. Its the first time I have worked on canvas, but I like doing it this way as I can kinda, just curl up in the living room watching TV with my mum whilst working on it, it keeps my hands busy. Again I will show you a work in progress as I know he wont get to see this :)

Its going to have all his favorite things on once its finished. I am pleased with it so far so yay. I was going to add colour, but in the end decided to keep it to black, as I have no idea what his room is going to be like and so on.

Its been nice to be busy and doing things, without being exhausted. Using my hands I can do without getting breathless, movement brings on headaches and general tiredness from having to breathe so hard. Again, mum is being understanding (and once again I am watching what I write as mum knows about this blog now and some of the stuff I write, though I am yet to find the leak that keeps getting to her) But I think she struggles to understand it sometimes.

For example, she seems to think that if I can sit and do things with paper and pens and such then I should be able to help with things around the house. Once again she said about how much time she spends looking after me and going to appointments and to London and I dont help her catch up with house work when back home. But with craft things, I can spread out on my bed and not move, but things like tidying the kitchen, involves bending, stretching, walking and carrying. I know I need to keep as normal as possible, but some times, especially if I have been out, it just becomes to hard.

Today was especially hard and I almost ended up at the GPs again. I awoke feeling full of cold, my throat was scratchy and my glands swollen. I have kept up my fluids and regular painkillers and it eased off, though it feels to be coming back again now. I really hope I dont come down with something. My immune system is not up to fighting right now, it has been blasted with steroids and a couple of courses of antibiotics in the last month alone in addition to my usual immunosuppression.

I guess at these times I want to say that Tracheal Stenosis is a bitch!! I have no idea what is going to happen one week to the next and then I hear others with it who are struggling too. There is one person I keep in touch with, for example, who has it. He dosnt live far from me, but today he got discharged from hospital after being in a month. He got his trach out and things were going well, but then his airway started playing up and now he has his trach back in, but with more problems than he had a month ago. He has been referred to my surgeon in London. I feel real bad for him, he is so down and I just wish there was more I could do than send emails to him. He is so down and has already had enough to deal with.

Tracheal Stenosis is a bitch! (Just incase I have never said it before)