Our greatest glory is not in never falling, but in rising every time we fall

Today, the world feels a little easier.
I feel more comfortable in my own skin.

I have finished the anti biotics so maybe my head can have some space once again.
For some reason, I turn into such a cow on them, bitching at everyone.
But today I say goodbye to them and begin to feel more myself.

I didnt sleep last night.
I accidentally saw something that was not nice for me to see.
It was in my mind all night.
Everytime I drifted off, I woke pretty soon after with a jump.

So after dinner, I was sitting on the couch.
I felt more grounded. Mum sitting next to me, dad on the other side of the room.
I felt safe. I curled up and I slept.
Real sleep. Sleep without dreams, sleep without rude awakenings.

I slept on for 3 hours, but I felt so much better afterwards.
I had the energy to do some of my laundry.
I tided, dusted and vacuumed downstairs.
I finished setting my dads new phone up with ringtones and games.
I taught him how to use it.
I finally emptied my bin (Been promising to do this for like the past 3 days)
And I replied to a load of things I have been putting off.

Im feeling more how I used to feel now.
Breathing still isnt great, but I am determined not to let it get me down.
I have prospects for the future.
There may eventually be an end to this, a cure.
It may result in lots of surgery and hospital time.
It may eventually result in a transplant.
But, if it means I can breathe, if it means I can live without the nebulisers, dressings and tubes.
Then, it will all be worth it.

And if it dosnt work out that way, then least I know that I gave it my best shot.

I found a letter the other day.
I wrote it when I first got out of hospital the very first time.
It was about a hallucination I had had while in ICU.
Mother Christmas was there, she was tucking me up in a patchwork quilt on the sofa so I could see the christmas lights on the tree.
She asked me what I wanted most.
And I replied that I wanted to have one last real Christmas with my family.
To tell them all what they mean to me.

Well I got that chance. And though I doubt I have told my family what they mean to me enough.
I have done it to a degree.
And I still have time to do more.
I hope they know that I love them and appreciate them all.
My family, my friends, my friends who I consider family.
Everyone who has influenced my life in some way.
My thanks go out to all of them.

Mentally, I am getting better.
I just have to keep fighting a little longer to fix the physical.
This is going to be a good thing.
And who knows where I go to from here.

two steps forward, one step back.

Or is that one step forward and two back. *shrugs*

So, im beginning to get a little bit excited at the prospect of Monday. Tickets are booked. Train leaves town at 9:48am and gets into London at 12. (cost bloody £52 each though stupid train) Then coming back we leave london (Euston. Never been that station before)  at 9pm and get home at 11:30pm. (that was only £10 for 2 tickets yay)

The appointment is 2:40 I think (need to check that) and the nearest station is kinds cross and then a short walk. hmm what to do with all the other time. Obviously get food, but where. hmm might take my mum to Covent Garden after the appointment to get some tea and a nose around the shops. Ill have to have a think and plan somewhere on route for dinner. eeps I cant wait.

Then comes the descsion. Take my small crappy handheld camera or my big proper camera. I have to take all my meds in there original boxes so I suppose I am going to have to do with a back pack so might as well take my big one. Meds are going to take up enough space, wonder if I can be a real tourist and take my tripod too.

Anyway, thats my positive bit.

So my surgeon said he would send me a copy of the refferal let that he wrote so that I could chase it up. Well, I got this today and me being me, I was egar to open it and read all the gory details. I have this thing when I like to compare to others, suppose its in a way of recognizing that Im not actually lying. I have this huge fear of going to the doctors with something and them telling me I am lying about it and they dont believe me. Even after having a transplant, I was scared my doc wouldnt believe that I had needed it.

So anyway, I was reading it and found it intresting to hear about the different sizes of stenosis I have had and the types of stents they have tried. I was happily reading it until I reached:

This patient has difficult venous access due to server cushings syndrome and obesity.

Ok, so I knew I had bad access asI had to virtually always have hickman or central lines in but was told it was due to my veins being accessed so much that they had collapsed. And of course I knew I was obese. But I had no idea about cushings. Why wasnt it mentioned. I knew the very basics about it, that it causes psych problems and is basically to much cortisol (a steroid) in the blood and that it is a very rare disease.

A quick look on google tells me that it can cause weight gain, tiredness, osteoporosis, and server mood swings that can often present as a nervous breakdown. So is this what is causing my depression? Could this be why I couldnt cope a while back and ended up an a psych ward? Is this why I sleep all the time and have no energy? Could it all be down to this disorder?

So I looked at causes, which kinda unnerved me. The main causes are tumors, either cancerous or begnine, well I know my anti rejection meds can make me more prone to cancers, but I thought the main types where ovarian, cervical and skin, but my mind is in overdrive.

So I go on to read a little more. First they have to find the cause EG: where the tumor is, its most likely on the pitutry gland, which is in your skull. It is often removed, by drilling into your skull through your nose or gums and remove the tumor.It maybe nesscary to have a skin graft after the op. You may also require chemo or radio therapy. Plus you may also need steroids for life.

Tablets for life I can deal with, god knows im on enough of them already. But all the other treatments? Could I really handle them? Would I really need them? The way he wrote server cushings, kinda makes me think that I will need treatment. But I still have to question why I wasnt told about it? And how they found out I have it. The only way I can think of would either be bloods or a 24 hour urine last time I was sedated in ICU.

I dont know, I have so many questions about it and no one I can really ask any time in the immediate future. So my head will just keep exploring the possibilities and looking for correlations.

I just really hope it dosnt interffer with this appointment on Monday. You know, if they turn around and say, oh get that sorted and then come back to us, I'm not sure what I would feel then. Suppose only time will tell.

So damn frustrating

I am not sure what I want to post tonight, but I feel like posting something.
I am trying to remain positive and for the most part its working, but then things bubble up and get so damn frustrating that it makes me want to cry or scream or something. Of course lack of voice prevents the whole screaming thing and as for crying, well dont go there.

I had my appointment today for ENT clinic today with one of the surgeons who was going to try to give me my voice back. However, he called in sick this morning and so he wasnt there. Therefore the appointment just became a tube change appointment with the nurses. (Whom I can not stand but more of that later)

I had a load of things I wanted to moan about to him and hopefully get some solutions. Things like permanently coughing up crap, waking in the middle of the night and having a 40 min coughing fit trying to get it up, pain, my referral to the other surgeon and of course my voice.

So the nurse at clinic knew about most of these problems because the nurse who has been coming to help with my dressing called her to ask if there was anything they could do as I was starting to look really rough from lack of sleep and aching form coughing. Well one nurse took my tube out while the other one wasnt in the room and the first thing she said was 'god how long have you had that tube in its looking really blocked' When I told her it was just over an hour she was genuinely shocked. So the whole tube thing went fine and then I was talking to the other nurse, whom might I add is a tracheostomy specialist nurse.

She had never heard of the covers that I had ordered for my tube as opposed to what I am supposed to wear. (I will photo one at some point) But anyway, they basically look like a big baby bib made of like foam and cotton. It keeps dust and muck out the tube while warming and humidifying the air that is breathed in. These new ones I found just cover the trach instead of half your chest, so much more aesthetically pleasing. Now these have been out for about 5 or so years and are fairly well used by a few different hospitals whose internet sites I have been scouring and yet this specialist nurse had never eve heard of them. (Im pretty sure when I trained, part of the ruling was you had to keep upto date with all aspects of your chosen field)

So anyway, my mum was telling her about my coughing all the time and her first response, oh well maybe the tube needed changing which we have done now so it should get better. My response, well it hasnt improve with the last couple of changes. To which she then decided that it was a combinations of dust, central heating and not drinking enough. To which my mum told her I drink tons any way after having a liver transplant and having had kidney trouble, I keep my fluids up (believe me dehydration sucks when you have crap veins) and that my room where I spend most the time is throughly cleaned and disinfected at least twice a week. oh and that I also had the same problems in hospital where there is no central heating. Her reply, oh well your body will settle down soon once it gets used to the tube.

At this point it took great restraint not to go an physically bang my head on the wall. I am struggling with this. This is beyond normal! My body does not do normal! Hence why a stent works for everyone else, but I end up in ICU when I have one. Why most people have a voice after a trach and I dont. All I want is some sort of confirmation that something isnt right or some suggestions on what I can do to correct it. I mean I am still exhausted all the time, I still get out of breath carrying my dinner from the kitchen to the living room and have to wait 5 mins while I get my breath back before I can eat. Something isnt right.

I am doing everything I am told. I am doing my physio, I am exercising, I am doing my nebs, I am taking my medication. But things are not getting back to normal.

I mentioned about wanting a tube that sticks out less but that I couldnt find the order code so could she have a look for me. Her reply, well if you get that type of tube you cant wear a speaking valve. oh darn it sherlock how could I have not thought of that! Not the fact that I cant (and she knows it) wear a speaking valve as I have no upper airway which you need to wear on.

And then she mentioned about tube sizes and how they gave me a smaller tube so that it would help my voice. At this point I was feeling pretty tense so I just looked at her and said (well whispered) guess what... it didnt work and I would rather be able to breathe through a decent sized airway than having a smaller one with no change to my voice. She started going on about how you cant tell the difference between tube sizes. I should have asked her how she knew. And how plenty of people have that size and manage just fine. But i have to wonder are they all elderly people who have had cancer (That is what most the info I can find on adult trachs relates to) or are they in their 20s wanting to lead an active lifestyle? And if so what the hell is wrong with me, why cant I move without panting.

I am just so fed up with the whole damn thing. They look at me and speak to me like I should be grateful that I have this tube kinda 'oh look it saved your life you should be glad your still here' and crap. But you know what, i'm not! Im angry and im bitter and im frustrated and tired. Im fed up of fighting just to get through. Cut me some slack, I want to tell them (or even do it myself) to just take the damn tube out because I have had enough with the coughing and the pain and everything else that goes with it.

Its just so bloody frustrating.
oh and joy of joy, the benefits people think I am lying to them and have made an appointment to come out and see me/ question me next week. Just what I need.

Small Things and Big Thanks

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

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

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

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

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

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

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

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

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

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

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

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