Tuesday, 29 November 2011

The end draws ever closer.

Hey there.

So, the last week has been a sobering one.  I decided to ask my consultant out straight about what exactly the hold up is with the magical transplant surgery that could possibly represent a cure for me.  And it turns out that someone is holding it up.  I don't know if they're holding it up because it's me that needs the surgery and not some cute little 5 year old who doesn't have a history of going crazy, or whether it's an administrative thing, and the hold up is because it hasn't cleared all the myriad of committees that are assembled to determine whether ot not these surgeries should be done.  I don't suppose it matters, as the outcome is the same.  But my surgeon did, very nicely, reinforce the fact that he is fighring on my behalf, and as soon as he can do it, he will.  I hope that's one day soon, because personally, my quality of life is not that great right now, and has only been declining since I first fell ill.  Sometimes, life is a bitch.  But if you keep kickiug back, eventually the bitch buggers off!

Other news... a very nice person gave me two PS2 Consoles and about 50 games for them.  I'm cleaning them up so that I can give them to the children's ward.  Maybe it'll make them smile for a while.  God knows, it's hard enough being ill when you're older, those kids must suffer some.  It's horrible to think about it, but I say a little prayer for sick kids every day, and throw a request into the air that they all be cured and looked after.  Sounds cheesy, but that's my little secret.

Friday I am not looking forward to.  I have an appointment at the Breast Cancer service.  My appointment time is early morning, but it says I could be there up to five hours.  Friday is the day I find out if this lump is just a lump, or something more sinister.  I have a feeling about it, which is not good.  Everyone I know who has been through something similar says that they knew.  So we shall see.  This week has been hard to get through, and it's only tuesday!  I am really, reaslly stressed, but luckily I am prescribed Oxycodone and Oxycontin for my back problem, and it's masking my fear.   It's not doing a lot for the pain though!

I saw my psychiatrist today, and he suggested I try a new sleeping pill.  The trouble is, it's so new that noone can get hold of it!  This is a problem that I have often, so am not worrying about it; I shall proceed with the temazapam until then.

My nebuliser is about to finish, so I shall sign off for now.  Keep looking after yourself, and fight like anything to get the healthcare you need.  ANything I can do, just let me know....


Thursday, 24 November 2011

What does TS feel like?

Well, for me it happened so gradually that it's really hard to say.  I had been on a ventilator in ITU for some weeks, and when they took me off it I was told that it was natural to feel a bit breathless.  Only I wasn't just breathless, I was breathless plus plus plus, if you know what I mean.  I was too out of breath to speak, and I couldn't stand or move anywhere without a huge amount of support.  And the breathlessness didn't get better, it got worse.  I became too restricted to keep food or water down, and as a resulot of that, I passed into a borderline coma because of unreadable levels of blood sugar.  All very traumatic. 

My brain was telling me that I was slowly suffoicating, but all the doctors were telling me it was in my head!  It felt like I was dry drowning, and my instinct was to fight it.  Because of this, I could not sleep or rest at all.  I was incredibly exhausted, beyond anything I had ever felt before.  And that made me really over emotional.

Eventually, they discharged me from hospital, and I found myself alone in the house with my cousin, still unable to catch any useful breath.  I knew that if I stayed there I would die, so I used my final oxygen supplies to throw myself down the stairs.  I knew that they would have to take me back to hospital, and it was my hope that someone would find out what was wrong.

Only I didn't factor in that my Uncle and Aunt and Cousins, for that matter, did not react as normal people.  They called the out of hours GP.  It being the countryside, the GP came to the house and his first words were 'call an ambulance NOW'.  While they were doing that, he gave me a nebuliser.  The nebuliser didn't help at all.  The narrowing in my airway was too great.  So he did something that was of more use than anything else.  He looked me in the eye and told me that he was here to help, he would stay with me until they found out what was wrong, and then he held my hand and hugged me.  Not in a creepy way, but he realised that I felt very alone and he made me feel so much better by doing that. 

So I got back to hospital.  By this point, I was so short of breath that my body was responding physically by grabbing at the air to try and physically catch some oxygen.  It's an involuntary reaction, you don't even think about it.  A very alert registrar came to my bedside and said that he was sure I had some kind of obstruction in my airway, but he couldn't see it with the tools on the ward.  He said that I should relax, not eat or drink anything (impossible by then anyway), and he would organise some tests. 

I had X Rays, CT and MRI scans, blood tests, ABG etc, and finally they took me down to the ENT clinic to be scoped (when they pass a fine camera into the airway).  He apologised to me as it was a traumatic experience; given that my airway had clearly narrowed, to have something else in their blocking it was very distressing.  He told me that I had to go to theatre.  He couldn't see a blockage, but he explained that I had a serious wheeze and stridor, and it was a matter of life and death, he felt that the blockage was too low down to be seen with the scope they had, but it was most certainly there.

He rang theatre to tell them I was on my way.  And he got into an argument with someone.  They told him they were fixing a broken nose next, and he told them that the broken nose could 'damn well wait' as he had an 18 year old about to go into full arrest.  I didn't realise entirely that he meant me, I was just too ill to take it in.

So off to theatre I went.  The lovely anaesthetic people held my hands and stroked my forehead, murmering gently to me as I went off to sleep.  They told me that it was all going to be okay, and I would feel a lot better when I woke up.  They weren't wrong.  I woke up in a room with two doctors by my side.  One of them smiled at me and said 'How do you feel?'.  I took a deep breath, smiled broadly and said 'OMG, I can breeeeeath!'.  And my next word was 'Ouch!'.  She said to me, I will just give you something for the pain, and she went to get a tablet which she popped under my tongue and said it would dissolve.  I don't know what it was, but it certainly worked.   They put a needle into the muscle on my right leg and gave me something that I think was liquid codeine.  It worked incredibly well.

I was sent off to the HDU.  I instantly felt a lot better because I could breathe a lot better than before.  My appetite and thirst came straight back.  In the HDU, there was a nurse who told me that she too came from Essex, and she asked me if I'd like some food and something to drink.  And I said 'oh yes please!'/  She went to the staff cafeteria and brought me a little bit of everything.  And I thoroughly enjoyed it.

The next day, a doctor came to see me and said 'do you realise that you will have this tracheostomy forever?  I clearly didn't.  I was so fixated on the fact that I felt so much better, that I hadn't even registered that I had a stoma.

He then said 'and because of your stenosis, which is untreatable, you will never speak again.  Ever.  And at this point, I went into deep shock.

It transpired that my breathing problems before had been cause by a stenosis that was blocking almost all my airway in every direction.  They estimated that had they not got me to theatre when they did, my trachea would have blocked completely within an hour or two.  And because no air at all was now passing through my upper trachea, I could not speak.

So there I was, just turned 18 years old, long blonde hair falling out by the handful (I did go almost totally bald), a tube in my throat, and no voice at all.  And they told me that this would be my life, forever.

So in short, when people say to me 'what does TS feel like?'  I answer this; it is distressing, painful, frightening, exhausting, emotional, life destroying and absolutely the most terrifying thing I have ever experienced in my life.  It feels as if someone is leaning on your windpipe with all their weight, and you have to fight for every breath.

If you have the chronic variety of TS, like me, you will find yourself going through traumatic and life changing experiences.  But you can survive, it just takes a lot of will to live.

I hope I haven't bored you with this, lol, there was no short way of explaining it.  Take care, and thank you for reading :o)

Tata for now, and look after yourself X

Tuesday, 22 November 2011

It's still there.....

Enough said really.  The lump is still there.  I have poked it, prodded it, even attempted to stick sterile needles into it.  This is driving me crazy, I just want to know what it is; do I or do I not have Cancer? 

If it were to be the big C, then I could cope with that.  It;s one of those things that I could set my mind to fight as if it were a separate physicalk opponent.  I picture myself as one of the knights of olden days, and the tumours would be my sworn enemy, with whom I must fight to the death....  But I clearly have too much time to think.

Regardless of all the traumatic events going on around me, I wanted to talk to you today about the wholke routine of looking after yourself when you have TS. This routine will vary from person to person, depending on things like whether or not you have a trach or a T tube, a stent or a permanent stome, or if you are going au naturel.

My routine at the moment begins with a whole lot of medication.  I take five different painkillers, four to five times a day.  These are to stop me going crazy from the pain.  I take lithium carbonate one or two times a day.  Sometimes never, but that's a whole other story.  I take carbocisteine, to loosen up the secretions in my aireway, and to thin them down and make it possible for me to cough them out, and harder for them to stick lioke glue to my stent and block it.  This drug is my wonder drug, and my life before it was becoming very very difficult.  During the summer, I woiuld be admitted to hospital every week with obstructions and chest infections.  The final part of my routine is to nebulise.  I do this a minimum of four times a day, and more often if required.  The nebulisers keep me well by keeping my airway moist, and by keeping the secretions in my airway loose.  My cough is not powerful enopugh to clear my airway, so most of these drugs are prescribed to help me with that.  Finally, I take a long term antibiotic, to help stop my poor clogged up lungs from becoming damaged from infection.

I do all of this every single day,  There are days when I feel mentally as if I just cannot do it any morem but I remember well what it is like to not be able to breathe at all, and it is because of that that I never miss a treatment.

You have to find a way to make it work for you.  I have managed to go on holiday by virtue of good planning.  I have however missed out on several nights out because my airway will not clear enough for me to come off the nebuliser.

Being tired is not a reason to skip your treatment regime.  Doing so will make you ill.  Skipping nebulisers in particular will clog up your small airways and make you almost guaranteed to get an infection.  You have to take responsibility for your own health and your own health care to a certain extent.  You can do it!!

Again, being fed up or bored is not a reason to skip your treatment regime.  Getting arrested is still not a reason; you have to tell them you are serioously unwell and need treatment, and they must comply, 

You get the picture; skipping treatment will lead to obstructions and infections, neither of which are nice.  So on those days when you are exhausted and you just want to sleep, put the nebuliser next to your bedm hook yourself up. and you are free to doze.  That's how I manage it.

It doesn't guarantee you good health, but not doing it almost certainly guarantees you bad health.  I've been there, and I'm certain many of you guys have too.  I hope we never get ill like that again.

Take care, and good breathing to all of you :o)

Monday, 21 November 2011

Decisions, decisions...

Well, my ent appointment was a washout.  He had a look at the top of the stent, said 'it's still there', and that was it.  I mean, I could have told HIM that!!  He told me that they are only allowing them to do these transplants on people who are imminently at deaths doors.  So, while my condition is serious, as I am plodding along with the stensts, the government expects me to remain that way.  They are ignoring the fact that alll of the tissue in my airway is no stone like scar tissue, and that leaves me ripe for a collapse or obstruction/arrest at any time.  Do they expect me to wait for that?  Fucking idiots, I hope they boil in hell.

And as for this lump, I can't take the anticipation.  I have a little sharp razor, and an almost copnstant supply of diazepam.  And I confess, my brain is asking me whether or not to cut it out myself.  As I say, decisions decisions...  My feelings regarding my airway are similar.  I guess that I am in what they would call a critical but stable situation.  So what would happen if I were to induce a slightly less stable situation?  If it looks shaky, they would have to fix it.  Properly.  And they wouldn't have to explain themselves to the givernment, would they?  I would fit the criteria fine.

I'm not saying I will do this today, but it feels good to at least have a plan.  I will need the surgery eventually anyway, so all I would be doing is potentially bringing the date forward.  Hmmmm...

I don't advocate self surgery, by the way.  Where airways are concerned, it's best left to the experts.  My situation is different to most people though; I am already dying, albeit slowly, from the complications of the TS.  So death in my case would be sad, but inevitable.  Until that moment that I cannot stand to be alive any more, I will keep fighting tooth and nail for survival.  Life is a gift.  Breathing does help you appreciate it though!!

Have a lovely daqy, and get out there and smell the fresh air.  If you live in London, it's probably better to stay inside and avoid the traffic fumes!!

Sunday, 20 November 2011

All will be revealed.

So, tomorrow is a new day, and it's the beginning of a new week.  And a very important week on the health front.  Essentially, all will be revealed.  I hope/  I don't deal well with stress or anticipation, so I hope my oncology appointment arrives within the designated amount of time and then I get to find out what they have planned with me.  Once I know what's happenning, I can deal with it.  But the not knowing has always been a problem.  I am a control freak, lol.

Also, tomorrow I get to find out if the TS is still killing me slowly, or if they have any new and innovative ideas on how to treat me.  My airway has turned to stone because of all the scarring from the surgery, and it is partly that which is making regular treatments so redundant.  I am an optimistic person, and I do believe that they will find a way to manage my TS better, if not cure it.  I will keep you posted.

Anyways, night night for now; be good peeps and nebulise and do your meds before bed always.  It helps you stay healthy, yes, but it also helps you get a much better night sleep.  And have nicer dreams :o)

Saturday, 19 November 2011

Final Exit

Hi there.

I don't mean to be morbid, but I wondered how many of you are aware of the risks of TS.  Do you realise, for example, that it may eventually be deemed incurable, once you've tried all the drugs, physio, surgery and grafts and transplants that are available to you, bio engineered or otherwise?  So what happens next? 

In my case, it happened gradually.  I had several years where, although my health was bad, I was basiacally able to work.  I just had long periods of coughing and spluttering, and many, many weeks in and out of hospital having suirgery, and IV antibiotics.  I could live what was a basically normal life, with just a few restrictions.

Then I became too ill to work.  I tried to work, but people kept complaining that I was too slow, too tired, I looked half asleep, I needed to go quicker, I was disgusting and should be kept in a box!  I was exhausted and in a lot of pain.  But so long as I had a lot of rest, I could get involved with voluntary work, and I managed to do some good for Chester society.

And then I became dependent on the nebuliser.  I developed a problem whereby my lungs had become so damaged that I produced thick and very sticky mucus.  This problem, brionchiectasis, combined with a very narrow airway with a stent in situ), meant that I experienced in excess of 20 near fatal blockages every year, for five years in a row.

I then discovered mucodyne, which was a miracle drug for me.  But the mucus had done a lot of damage to my lungs, and it just hurt to breathe so much.  I tried to go back to work, but I was easily tired, breathless, I had toi drink non stop, which led to more bathroom breaks than average lol, and on more than one occasion I had to leave instantly to get to hospital to be medicated for almost total blockages resulting from mucus plugs.  It was a constant struggle and I had to take days off work not for the sake of my health, but for the sake of my life.  My employers in some cases were less than understanding.  Many of them openly accused me of faking, or of overexaggerating what was wrong with me.  And to top it all, I had at the time what was undiagnosed, and therefore unmedicated bipolar disorder type 1, which made me either so depressed and almost catatonic that i was almost impossible to communicate with, or so overexcited that some people told me it made their head hurt to be subjected to the constant rush of ideas that was going through my mind.  I was in a very difficult situation and I couldn't win.

And then my airway deteriorated to the point where it was classed as untreatable with currently available technology.  ANd I was unable to work, which was a blow because I really wanted to.  They told me quite bluntly at one of my appointment two years ago that my TS was most likely going to be terminal.  And I smiled, and said thank you.  Then I went home and made dinner for my husband, and asked him about his day.  It took weeks to sink in.

Which leads me to my question of today.  Have you ever made plans and preparations for what you would like to happen after you die?  Even if the TS can be cured or controlled, and is not the cause of your death, you should really leave instructions for your family in the event of your death; it would save them from having to deal with that stuff at a time when all they want to do is cry.  And they might find it coforting to know that you thought enough of them to take that worry away from them.

I have made it clear to everybody that my ideal death, if the pain and lack of available air to breathe become too much, that I wouyld like to go to an assissted suicide clinic in switzerland.  It's not for everybody, and I'm not promoting this or even advocating it.  It's just something I feel may be right for me.

I have also planned for what may happen if I cannot complete the process required for my first choie.  I would like to be cremated.  The idea of being buried ina box makes my skin creep.  It's frightening.  I would like my ashes to be scattered over London, the City where I have lived most of my life, the place I was born and bred.  I don't want a big do at my cremation.  It would be nice if they could find a way of playing my fabvourite tunes from my ipode for the hours before I am crispy fried, lol.  And then just as the gates to the chamber open, maybe they could play 'thought I'd died and gone to heaven'.  hehe, my idea of an apt song.

And then maybe everyone could have a drink and say cheers to me.  And then they can leave me be.  I will be fitted for my angel wings and hello, and learning how to fly up to the pearly gates.  Can't wait!

Ultimately, I think that if I have made plans for my final destination, it will ease the stress a little for my husband.  And I love him enough to want to do that.  I've even taken out a funeral plan to pay for it.

Sorry this is grim and a bit morbid, but the moral of the story is that TS can kill you very suddenly and without warning, and you need to be prepared.  In the final moments of your life it really is comforting to know that you have all your 'shit' in order. 

I really hope that you are cured of TS way before it reaches that stage.  But as the brownies used to say 'be prepared'....  or was that the scouts?  Lol, all I can think about know is 'hoot hoot hoot', and dib dib dob!!!!

Speak soon XXX

Wake me when it's over...

I woke up this mroning feeling as if I had a bad dream.  It took me only a few moments of prodding and poking to realise that I was wrong, and what |I thought to be a dream was, in fact, reality.  I spent most of the day pretty much doing what little kids do when they think a monster is chasing them.  I lay in my nice memory foam, feather adorned bed, and I hid under the covers.  I even plugged my ipod in, so I couldn't allow anything to intrude into my head if I din't wish it to.  The difference between the five year old me and the thirty two year old me, is that the monster I am hiding from may be very real.  I really hope and pray with everything in my soul that it isn't anything to worry about.  But the fact remains it could be.  I'm scared.  And I'm in pain.  I didn't realise that the oxycodone that I take for my spinal condition has been masking the pain that I have on the left side of my chest.  And I know eveyrone hates to talk about discharges from body parts, but be aware (if you're not) that a discharge is a symptoms of breast cancer, and you should get it checked out if you develop an abnormal leak.  I've been in denial for a lot longer than any sane person would like to admit.  And it's because I have an irrational fear of being touched by other people.  I hate it, and it's one of the few things in life that will send me into major meltdown.  I only managed to make it through my breast exam the other day because I was loaded on benzos.  I don't advocate that, it's just what I have been prescribed to help me stop getting too worked up generally.  I don't know how I'm going to cope with doctors that I have never met touching me.

And of course, I have this thought in the back of my mind that it really could be cancer.  It feels like my body has been trying to tell me something was wrong for a while, and I did nothing whatsoever about it.  I took the motto 'keep calm and carry on' to the ultimate extreme.

I am so stupid.  While I'm at it, I should maybe admit that I have never had a smear test.  I know it seems reckless, but I was attacked a few times in close succession between the ages of 16 and 22, and it's made me really quick to panic when people do things to me that I don't feel in control of down there.  Luckily, my husband doesn't mind being bossed about!!

My breathing is deteriorating rapidly, and I am really sure that it is the stress of what's going on at the moment.  I don't know if the pain in my chest is caused by my breathing issues, or by a tumour in my breast.  And I don't know if I even want to find out.  I'm feeling very confused today, and as a result of my introverted lifestyloe (which was a result of my mental illness), I don't have many people I can talk to about this.  I have a lovely friend who I've known since I was 13 or so.  She has supported me through every high and low point in my life, and she's the kind of person who would give you the last money in her purse.  I know this because she did.

And there's lovely D.  I met her at college where I was doing my degree.  I coached her through a few modules she was struggling with, she went on to write fabulous assignments, passed with great marks, and now is the most incredibly sweet and supportive friend I could hope for.  If there's ever a crisis in life, she always meets me for cheesecake and hot chocolate.  Not healthy at all, but it does help.  Or maybe it's having a good natter that helps.  Other than those two, I have noone to talk to.  SO please forgive me waffling on.  I will shut up in a few weeks when I hopefully will find out there's nothing to fret over.

I will have to do my ninth nebuliser of the day soon.  I think that it's time for a stent change, so I will ask my consultant on Monday when he can fit me in.  I try not to panic about my airway unless I have to.  The trouble is, I look too calm.  The last time I had a respiratory arrest, the nurses thought I was jokling when I asked for help because I wasn't flapping about.  So they told me to lay on my bed and go to sleep!!  Luckily an astute student realised that me extremities were turning blue, and raised the alarm.  I remember looking clearly into the eyes of some of the nurses I have known for a very long time,  and what I saw in their eyes was fear.  And then I realised I was in trouble.  So my advice is, if you're ever in the same situation, pick up the heaviest thing you can find and throw it at the wall, the floor, wherever.  Bang on the bed repeatedly (or rather, the bed frame) with something metal, until they look at you.  Throw your water jug/coffee mug at the wall.  Do whatever you need to to attract their attention to get help and stay alive.  You can apologise for broken mugs and noise damage later.  Being polite isn't worth dying for.

So my song choice for tonight is QPD by Population 1, and Staying Alive by the Bee Gees.

Friday, 18 November 2011

And so it might be cancer...

I went back to the nurse today, and she checked me over again.  And made me an urgent referral to the local cancer clinic.  It's weird, y'know, as I never considered for a moment that something like breast cancer might intrude into my otherwise well packaged life.  I feel a bit like this is all happening to someone else.  Kind of detached from everything. 

My only small consolation is that maybe writing about this might help someone else.  I can but hope.

Next week is a busy one.  I have an appointment with my lovely consultant on Monday at the ent hospital. He's going to tell me yet again that there's nothing they can do to cure my TS, but they will do everything they can to help me lead a normal life.  Lol, there really is nothing normal about my life!! 

Tuesday, I have an appointment with Norman, my care co.  He's a nice chap, but a clock watcher.  He will do his job well, until lunchtime, then he's off.  I understand, you do become a bit weary after years of doing a job like that.

And some time later in the wqeek, I will be entering the murky world of Oncology departments.  Jeez, I really never thought that would happen.  As I said before, I feel as shocked as if someone had hit me over the head with a netball post.  That actually happened to me once!  Luckily, I have a hard head, so no major brain damage. 

I've decided to take a temazapam and go to bed for the rest of the day.  I hope you have a much nicer day than me.  Get out there and live life, carpe diem, and all that.

Have a lovely day, XXX

Thursday, 17 November 2011

Another day, another hospital appointment

Today I had an appointment with mny care coordinator Norman.  I arrived at the hospital, and took my place in the waiting room.  My psychiatrist walked past and said a very friendly hello, but I just felt too glum to do anything other than smile and wave.  I like my psychiatrists, he's a nice warm chap. Norman was in a meeting, but when he eventually arrived for our appointment, we went into a little room off the side corridor.  Irnocially, it was my psychiatrist's room. I got to sit in his chair, which turned out to be very uncomfortable, lol.  Poor old Francis!!! 

Norman asked me how I was.  I couldn't even speak.  I was just so full of angst and general worry.  I managed to blurt out that I found a nasty lump, but I couldn't talk about it any more than that.  Norman insisted that I need to see my shrink earlier than january, which was my next appointment, and he went off to make the appoitment.  I waited for ten minutes, but began to feel like I couldn't breathe, as if I were suffocating.  I have heard people say they felt like the walls were closing in on them, but today I experienced it for the first time for myself.

I walked into town in a bit of a daze. It was as if I had tunnel vision.  I went to pay for my glasses, and was pleased to get some points on my boots card, lol.  Small things please small minds etc.

My breathing was a bit ragged all day.  A true reflkection of my state of mind.  I have my next appointment with my consultant at the ent hospital on monday, so I should be able to get that checked out.

And besides that, I am just worried.  I've spent most of my adult life wondering what it feels like to be an adult.  This week, I found out.  I've never felt so shocked in my life.  I feel as dazed as if someone had dropped bricks on my head.  Maybe it would be better if they did.

It seems that having a serious illness such as TS does not exclude you from developing another serious illness (or potentially serious illness).  So just be alert.  Complacency is not a good thing.

I've been spending the last few days wondering how long that evil little lump has been there.  Hopefully, not so long. 

Best wishes folks, have a lovely day.  Good breathing and good health.  And good night!

Wednesday, 16 November 2011

Just when you think you can relax...

Hey there!

Today has been a not so great day.  My breathing is fine; by that I mean that it isn't significantly worse than usual.  TS is not the thing bothering me today.  I will be honest; I found a lump.  For a woman, lumps are not such a great thing to find.  I know that 75 percent of lumps are benign, but my mind has raced ahead and started thinking about what would happen if I need surgery for something other than my airway. 

Because of where I live, I would be referred to Queens' Hospital.  Queens' is probably a really nice place, but I have had nothing but bad experiences there.  They told me bluntly one day 'why do you bother coming here?  We have no experience of treating TS, and no equipment to treat TS.  If you nheed to go to hospital, you have to go direct to the hospital in London treating you'.  Fair enough, but the hospital in London treating me (the RNTNE) no longer accepts walk in patients or self referrals.  Which means that I have two choices; to either go to the Lonhdon Hospital, or UCLH.  The London refers their ENT patients to Barts Hospital, which is no good to me as I need to be sent to the RNTNE.  Which leaves only UCLH.  One day, I will tell you a long story about what happened to me at UCLH, but to cut it short, as I once made a very serious attempt to hang myself in the hospital bathroom, they now insist that when I am at their hospital, I must be either guarded by security, or escorted by a RMN.  This is fine, absolutely fair enough.  But it's quite distressing when you can't breath and are in terrible pain because of it.  C'est la vie, and all that.

So my worry is, if I do need surgery to remove the nasty lump in my breast, where am I going to go?  What do I do?  I can't go to Queens'; they can't deal with my airway.  I'm not afraid to admit that I am frightened.  Not because of the lump, andall that entails, but because of the logistic problem.  What is to become of me?......  lol, dramatic or what?!!

Sorry for wittering on, like I say, it's been a stressful day.

My message today folks, is check yourself for lumps and bumps carefully; you never know when it will save your life.  TS is not anh excuse to neglect your body.  You are unique and special people, so please take care.

Have a great day.  And look after yourself!  See ya soon XXX

Thursday, 10 November 2011

How do other people react to TS?

Hey there!

I've been thinking about living with TS a lot this week.  Normally, it doesn't bother me so much; I try and let my personality override any physical disability that I might have.  But sometimes, there is just no getting away from the fact that my airway is damaged beyond repair, and my voice is damaged also.  The scarring on my neck is also messy and very very obvious.

I was in the supermarket, packing my groceries.  I spoke to the cashier, who said 'what?'.  I spoke to him again and again, and got the same response.  However hard I tried, he just could not ( ort would not) understand me.  My voice used to be very low and smooth, but I had grown to like it.  I was told that I sounded kinda like Mariella Frostrup.  But now my voice is very low, and sounds damaged.  I sound like I have a permanent and very bad case of laryngitis.  And I hate it.  Sometimes, people greet me with 'hello sir!', even though it is blatantly obvious that I am not a man.  And a lot of the time people say to me 'you have a cold, don'r you'.  There are only so many times that you can explain the same thing before you lose your composure.  I shouldn't complain, I spent over a year with no voice at all (which was horrific), but I really feel as if |I have lost part of my identity.  It's something that I get kinda depressed about.  I joke about it when I am at work.  I tell people on the phone that I am faking a sexy voice.  The men love it.  The OB/GYN doctors love it the most.

The scarring on my neck gives me problems sometimes.  Although I am now very much used to it, the general public are obviously not.  I get a lot of children staring at me, and sometimes the adults join in.  They should know better, so I tend to stare back.  I am a human being and not an exhibit in soe kind of open zoo.  I am a young ish woman and I want to look attractive.  But there is no way to cover the scarring, or to make the shape of my leck look normal.  I don't want to wear a scarf all day every day, and it's a hopel;ess task to try and cover up the scars with makeup.  If people get nosy, I tell them that I lose thye plot every now and then and cut my throat open.  Then they feel every bit as awkward as their staring makes me feel.  It's a childish response, but good for the soul.

The breathing bothers me.  Not the actual intake and expiration of air, but the noise that I make when it happens.  People can hear my heavy breathing, and they think it's a joke.  Hahahahaha.  Not funny, is it?

Sorry for sounding so bitter.  Its just that this week has led me to think more about dfying.  I've experienced respiratory arrests on several occasions, and I am terrified that that is the way I will die.  It's why I have been looking into Swiss clinics such as dignitas.  I wish to choose death on my terms.  Not a lot of people agree with me, but everyone has thwe right to their own opinion.

I hope that you all don't have to wrangle with this TS thing for as long as I have.  But if you do, then you have to fight as hard as you can to be able to live the life you want.  And there is no shame in admitting you can't cope, and asking for help.  If I c an ever help, please let me know.  I will do my very best.

I shall cheer up before I post again.  Have a lovely week peoples XXX

Tuesday, 18 October 2011

Sick of TS? Terminally so.

Hi All,

Y'know, there are days when I genuinely get sick of TS and all that it entails.  I got a letter from my Consultant the other day, and it said something that you never want to read in a medical letter.  It said that 'they (the medics, surgeons, etc) should continue to support me in leading a normal life as far as is possible'.  They mean well, I know they do, but what they seem to be saying is that a normal life is now beyond my reach.  I asked my doctor what he thought it means, and he replied that it's something they write a lot about people who have a condition that is deemed incurable.  Incurable?  Says I.  Yes, says he.  In other words, terminal.    And I just thought 'I will prove them all wrong, again'. 

I should explain.  Over the years of my journey with TS, I have had several near death experiences, a couple of actual death experiences, and I've also been told time and time again that I will never recover from TS, and I will always be too ill to walk myself to the toilet, or get dressed and washed in the morning.  Well, I tackled those hurdles one by one.  The first thing I did was to learn to walk again.  Then to get dressed.  Then my hair fell out.  My lovely long blonde hair.  That was a blow, I do not look good bald.  But when it grew back, it grew back thick, dark blonde, and (wait for it), curly!!  As someone who had straight hair her whole life, the curly was a real bonus.  I look at photos of that time, and I look like I have a blonde 'fro,  Straighteners were not common ten years ago!!  Not even in Essex!!!

I guess what I'm trying to say is that even when life deals you dirt, sometimes the sun shines on your head and flowers grow!!  They haven't given up on the idea of operating to replace my necrosed dead deaded tracheal with a bio engineered or tissue engineered one, but I guess they have introduced to me the idea that it might not happen.  And if it doesn't happen soon, I am done for.

I've started to make plans for my funeral.  Not wanting to be morbid, but I guess these things need to be done.  I have begun a list of music that I like.

1.  Harder to Breath by Maroon 5.  Because it's funny!!  I'm allowed to laugh at my predicament.
2.  The Air That You Breathe by Population One.
3.  Take my Breath Away
4.  Breathe by Kylie Minogue.

Other songs that I just like:
1.  Nothings Gonna Stop Us Now by Starship
2.  Anything by Nuno Bettencourt/Extreme
3.  I'm Going Home by Daughtry
4.  Breakfast at Tiffany's by Deep Blue Something
5.  Bailamos by Enrique Iglesias
6.  Until you Suffer Some by Poision

There are literally hundreds more songs that I love, many of them vastly different.  Music has been a huge comfort to me in some of the most painful and distressing days of my life.  I really hope that continues.  Without music, people miss out on so much.  My mum is totally deaf, and yet in her heart she can still hear the music of her youth.  She was robbed of her hearing, but her memory stepped up to the plate and won't let her forget the songs she loved.  That happens a lot in life.

So if you're struggling right now, I'm asking you to go out and try to find one thing that brings you some pleasure in life (keep it clean please) and get out there and do whatever it is as often as you can.  Make it within the law and productive, and you literally can't go wrong.  Seize the day and get as much as you can from life, don't just dwell on the nasty painful crises that life throws at us from time to time.

You have the power to be anyone you want to be.  Even physical limitations can be worked around.  Okay, I'm never going to be able to run marathons, for example, but I could get out there and support the people who do.  Getting involved with the community is a great way to distract yourself from your own problems. 

I just hope that today brings you better news than it brought me.  Forgive me for sounding lectury, lol, I just had some really lousy news and it's blown my mind a bit.  I'm trying to see the positive, but it might take me a few days to figure out where it is.  Sometimes the happy likes to play hide and seek.....

For now, my friends, have a good night.  Sleep well and be peaceful, there's nothing in life that can't be dealt with in the morning!!!  Sweet dreams X

Sunday, 16 October 2011

What kind of scarring does tracheal stenosis surgery leave you with?

Aha, now this is a difficult one.  I have seen several people have major reconstructive surgery for TS, and a few weeks later you really couldn't tell.  They just had a tidy little scar that eventually faded into the natural creases of their neckline.  I have seen other people who are left with more obvious scarring.  But a little scarf, accurately placed, seemed to contain the problem.

And then there are the people like me.  If you have a predisposition to forming keloid granulation tissue (believe me, you will know if you do.  It's the large and lumpy bright red kind of scarring), then you are pretty much guaranteed to be scarred for life.  My neck is, in the words of my surgeon, a total bloody mess.n  I guess that after six tracheostomies, a few failed attempts at reconstruction, and a hundred or so stitches for stents, you wouldn't expect anything less, lol.  I've learned to live with it.  When people ask, I just tell them that I am a survivor, and proud of that.  And you should be proud too.  There are things you can do to reduce the scarring.  You can put that bio oil stuff on the scar line. Some people swear by it.  Personally, I find that accepting the presence of the scar is the most psychologically healthy thing to do.  Don't let ignorant people make you feel uncomfortable.  There will be people who say 'er, what's that?  Yuk', but don't let them get to you.  These are the kind of people who were knocked on the head when they were young.  They can't process anything different.

The scarring will get better over the years.  It will become flatter, and the raised red ridges will fade to white and flatten.  But it won't happen overnight, so have patience, and don't let anyone make you feel like you should hide it.  Your scars are a sign that you made it through a tough and life threatening journey.  Be proud of them.

Take care.

Tuesday, 11 October 2011

Can tracheal stenosis be cured?

This is something that I have been considering for some time now.  Pondering, you might say.  The big question is, can tracheal stenosis be cured?  Well, I must begin by stating that there are several 'types' of TS.  There is the 'acute' variety, which occurs suddenly and can be cured very easily.  And then there is the 'chronic' variety, which is not so simple to resolve.

As you might have guessed, I have what they call chronic tracheal stenosis.  My TS developed after intubation, and was total (it blocked my entire airway), and it blocked a long segment of my airway.  I believe that something like ten centimetres of my trachea are damaged by stenosis.  That makes it difficult to deal with.  They could not just cut out the damaged section and remove it, and join the ends together, as this would have left me with a very short trachea indeed!  So instead, I underwent an interesting surgery to open up the damaged section, and graft in a donor section of trachea.  I was in hospital for five weeks after this major, major operation.  And you know what?  It failed.  I developed tracheomalacia ( a floppy airway).  This was the last thing I needed!! 

So over the years, I've had 100 or so procedures to laser out granulation tissue in my airway and place a stent in to support what's there.  And when that failed, I've had tracheostomies.  Six tracheostomies, to be exact.  I've had pink ones, I've had green ones, I've had blue ones, I've had yellow ones and they're all pretty icky and they all look just the same, lol....  I have never had a silver one.  Maybe next time, eh?

So ultimately, my surgeon told me that my TS cannot be cured.  And I calmly nodded my head and said 'c'est la vie'.  I walked out of his clinic, I walked upstairs and out of the hospital.  I walked along the length of Grays Inn Road, till I reached the station at Kings Cross.  I got on the train.  I got on another train.  I got as far as Stratford.  And as the crowded train left the station, I broke down completely.  I am only human.

The moral of the story today is this;  all of these radical surgeries are great.  They save mnany, many lives.  But they do sometimes fail.  You must understand that the consequences of failure are severe.  So when you have to make decisions about surgery, make them carefully and do not let anyone at all rush you into making a decision.  I say this because I care, you must look out for yourself.

Monday, 3 October 2011


When I say aggravated, I mean my soul AND my body.  Lets start with my soul....

Today I went out for dinner with my mum.  We went to the Carvery just over the road.  The food was kinda mediocre, as compared to food I had there a couple of weeks ago.  It was annoying.  The idea of a cheap early diner bargain should be that you get the same quality of food that you would get at any other time.  But life doesn't work that way, does it.  Anyway, my mum had been expecting a payment from somebody, but when she checked her bank account, there was a big fat zero.  SO she spent all of the meal feeling upset and anxious, when it later turns out that they made the payment, it just won't clear till tomorrow.

Anyway, onto this job that I was offered almost four months ago now.  The thing that's holding it up is not the hospital.  It's not my referees.  It isn't even my health checks.  It is the CRB check!!  I got an email today asking me to resumbit an application, which is a pain in the wotsit, as the details are exactly the same as they were before.  So I got right to the end, clicked submit....and it crashed halfway through sending it.  Again.  Absolute joy.  But I did get an email telling me they got it, so I guess it worked out eventually.

Onto my soul.  Now, my surgeon told me something life four years ago that they were working on a tracheal transplant, and I was top of their list.  I saw my surgeon last week and it turns out that, y'know what?  I'm NOT....  It would be easier to understand if you knew what it was like to spend 14 years gasping for oxygen on a daily basis, multiple arrests and major surgeries.  Frustrating isn't the word.  It's actually downright scary.  I have spent almost half of my life now waiting for a cure.  The only thing that keeps me going is the promise of a cure.  But it feels like it will never happen.  I will never give up hoping, btw, don't get me wrong.  If they tell me that transplanted toad skin made a great replacement trachea, and they needed a guinea pig, I would let them do it!!  My surgeon told me ' you don't want to be the first'.  I disagree.  I do.  I do want to be first.  I've spent so long waiting, and my breathing is so painfully bad, that of course I want to be first.  I want to be cured.  I want to not feel like every day might literally be my last.  Bugger.

The poor quality of life that I have at the moment will never be enough.  I will make the most of it for sure, but think what I could do if I was well?  Just think!!!  I'd aim to be one of those illusionists in the deep south, lol, like the guy in X Men, hahahaha....

The worst part of the health issues is the tiredness.  I can only go for about two to four hours before exhaustion kicks in.  It's a pain in the you know what, because nobody believes that somebody who looks as healthy as me can be so tired and in so much pain.  It makes them short on understanding.

Today I am a little down, but I suppose what I want to say is, allow yourself to have those down days.  But pick yourself up again the next day and fight your ass off to stay alive.  You are to important to cave in to something like tracheal stenosis.  It's a hard fight, but no fight worth winning was ever easy.

Take care.  Listen to a nice oxygen filled song.  Like 'It's getting harder to breathe'! 

Tuesday, 27 September 2011

Scar, you're a scar!....

Ha, a little play on words there.  It's a bit random, cos I don't know how many people out there will know the Extreme song 'Star'.  But what's done is done :o)

Soooo, yesterday I had a clinic appointment at the ENT hospital in London.  I decided to go on my own, so my husband got to doss around in bed all day.  Lucky him!  I decided to go on my own, because my other half seemed to be getting a bit confused, and thinking he was my carer, not my lover.  There's nothing that kills your love life more than watching your husband walk off and have a chat with your doctor about you.  So to make my boundaries clear, I have relegated him back to the role of other half, and the doctors now have no choice but to deal with me. 

Anyway, my consultant was in, and on fine form.  He told me that on thursday, he will be performing a tracheal transplant on a young lady who is in absolutely dire straits.  He apologised to me, as I was supposed to be the first, but I guess that if her need is greater, then she needs it more than I do right now.  He's a nice chap, my consultant, but he takes a long time to get to know.  He's generally quiet, and he has that stiff upper lip thing going on, but once you really talk to him you realise that he's just a normal bloke, with a normal sense of humour.  People who expect their surgeon to be God, they're the ones who get disappointed in life, y'know?  So anyway, the outcome is this, my airway is still completely dead, and solid as rock (albeit not in a good way).  But it's not as fecked right now as this other poor kid.  I think all of us should say a prayer for this kid, and her surgical team. 

My life, health wise, is pretty miserable right now.  I have this huge area of scarring on my neck, which extends right into my throat.  I had an infection a couple of years ago which ate almost all the way through the skin on my neck.  It went green, then black, then turned into liquid.  It was disgusting, and the idiot 'doctors' at the loony bin kept sedating me every time I complained about it.  Medical negligence?  And then some.  But I'm allowed to mention Mascalls Park Hospital, now the shitehole is a shuthole. hehehe.....  I wake up every morning with a mouthful of mucuous.  Mucous is basically a heady mixture of what other people would call snot or phlegm.  It isn't pleasant.  I then spend the first two hours of my day on a nebuliser to help me cough up the rest of the mucuous that has settled in my lungs overnight.  I take medication.  Carbocisteine thins out the mucuous in my lungs, helping me clear it.  I take two of those three times a day.  I use an inhaler, Flixotide.  It's a steroid, and it helps keep the swelling in my scar tissue down.  This is a good thing because all my scar tissue is in my airway.  My trachea is pure scar tissue.  I take 40mg oxcodone.  I take this 4 times a day.  I know it sounds excessive, but it's the only painkiller I have ever had that has mostly worked to control my spinal pain.  The spinal pain isn't like backache, people get that totally wrong.  The spinal pain is caused when bones in the spinal column rub against each other.  They're not meant to, lol, and that's why it hurts!

More medication, pregabalin, carbamazapine and priadel lithium, all help to control mood, mind and other nerve based problems.  And of course there are the almost constant nebulisers.  Most of the day revolves around treating my tracheal stenosis and associated lung problems.  When I have my tracheal transplant, and I am sure this will happen soon Mr S, hahaha, I look forward to getting my life back.  The freedom to make choices that are not based on medication or side effects will be the biggest thing that I gain.  Want to get on a plane to New York?  Sure, I'll be able to do that without having to first spend three weeks getting medication, copies of prescriptions, and letters saying I'm fit to fly.  Screw all that, I'll be able to just hop on the sodding plane!!  Can't wait.

The biggest thing will be being able to take a full lungful of air.  God, I would kill for that right now. 

Spare a though for the kid having the major airway surgery.  Air is a good thing, it keeps us alive and afloat.  I hope with everything that it goes well.  Good luck to all of them.

Sunday, 25 September 2011


Lol, I thought this story might make you laugh....  on my last visit to the OPD clinic at the ent hospital, I sat in my usual place, just inside the little clinic doors.  It's nicer there.  There are fewer people, so it's quieter, and they have air conditioning.  Anyway, the SpR came out and asked a lady sat next to me if she was happy to see him.  She answered 'No, I absolutely must see the consultant, we have a 'history'' in such a pompous tone of voice that it instantly made my hackles rise.  FFS, I thought; EVERYONE in that damn clinic has a history, it's why we're all there!!  Lol, talk about non engaging brain before mouth.  So anyway, the SpR just shrugged and said 'okay, but you'll have a long wait', to which she replied 'fine'.  So then he called me in.  I've known the SpR for a while now. He's a nice chap, good at what he does and very gentle.  So I was very happy to see him.  He wasn't able to deal with what I needed instantly, so he asked me to wait in the outside clinic again, which again, I was happy to do.

So this woman who had stated five minutes previously that she was happy to wait for the consultant suddenly started to kick off.  She started going on about how she was 'obviously next, as her appointment was waaaay before anyone elses' lol.  She then started to drag me into her row, and said to the nurse in charge 'sheeee has already been seen, so ignore her, and....' and it was at this point I intervened.  'Please do not drag me into your row', I asked.  I asked nicely, mind, I said please.  But she ignored me and carried on.  I asked again, 'Look, I am still waiting to be seen.  Please do not tell people that I am not.  You do not know anything about me or my situation, so kindly do not refer to me in your row.'.   But she still carried on.  At which point I told her to 'shut the F*** up.  These doctors and nurses are working their asses off to help you and all you're doing is moaning at them.  Please do not drag me into this.'.  And still she carried on.  So I turned to face her.  I said 'clearly you are incapable of understanding that you are not the only person in need of medical help today, so let me make this plain; I am dying, as is almost everyone else in this room.  We have bigger problems than you.  You have no right to try and stop me being seen by my doctor at my clinic appointment.  And if you don't fuckin shut up, I will personally make sure you do.  I will remove you from the building myself.  Understand?'.  And she started spluttering, lol, and then she said 'excuse me?', which I blanked.  She then poked me.  And I said, very slowly 'do you enjoy having five fingers?'.  Hehehehe, she eventually did shut up.  Anyway, her appointment was at 1 45 and mine was at 155. But I got called in first, haha, again, which sent her into absolute total fury.  It is fun sometimes, letting go.  Just be careful that you stop before it all goes too far, y'know?  She had no right to interfere in my healthcare decisions though, and on that point I stand firm.  It is generally only the well who have the energy to create such a hissy fit in clinic.  The really sick people are usually too grateful or desperate to bother.

Saturday, 3 September 2011

And so it begins!

The weekend, that is.  I hope you're all having the same kind of weather we have in London right now.  It's actually reasonably bright and cheery, which makes a refreshing change.  It's good for the lungs, too.  I have been using flixotide inhalers to try and calm down my airway a little, and I don't want to tempt any kind of fate by saying it works completely, but I do get the feeling it helps somewhat.  With stenosis like mine, anything that helps, even a little bit, is worth trying.

I've been making preparations for my trip.  Unlike most people, when you have a chronic illness, trips away usually involve making sure your health is covered.  My lovely auntie already bought and paid for my travel insurance, and included cover for my condition, which the insurance company always lists as tracheostomy.  It's reassuring to know that if the worst were to happen, I can get the funds to pay for it!  Always declare airway problems when you travel, it just isn't worth risking what could happen otherwise.

And then I dug out my travel nebuliser.  I don't find it's as effective as the mains powered one, but in a crisis it is better than nothing.  I found a company in Canvey Island, Essex, that rents nebulisers for trips.  So if I were to have a last minute machine malfunction, they would be the people I ran to.

And then I had to get a letter to say that I have certain medical conditions, and I take medication because of them.  This is of course to make sure that I don't get arrested for trying to smuggle drugs!!  Lol, God forbid that should happen.  I take copies of my prescriptions as well, and a letter from every consultant that I visit.  So I am as prepared as I ever can be,

And then we move on to packing clothes and things.  My husband and I are sharing one suitcase, which we hope to carefully fill so there's a little space to bring back souvenirs, goodies etc.  I carry my medication and nebulisers in a backpack that I take on the flight, my husband has everything else.

And now I'm starting to panic again.  Thank heavens for temazepam, lol.

My care co, Norman, was lovely and helpful yesterday, and he provided me with a medical letter without even being asked!!  What a great man :o)

I have to start tidying the house today, and cleaning up my equipment.  To be honest I'm a bit of a slob, but my mum is taking care of the flat while we are away, and I don't want her to realise quite how big a slob I am, hehehe.  She's looking forward to staying; she loves my cats and they love their nan.  It'll be fun for all of them, I hope.

Have a lovely day, speak really soon :o)  Keep breathing, blue is not a good colour for the skin!

Thursday, 1 September 2011

What goes down must come up!!

Hey there, it's been a while.  Well, I can't say that I have been up to much that's interesting.  As you know, I had surgery early this month to change my stent, and whilst the surgery seemed to go okay, there were a few complications.  One was that I got seriously disoriented after the anaesthetic, and tried to make a run from the recovery room, lol, they had to chase me down a corridor and pin me to a wheelchair, literally.  I had a CT scan the next day, which didn't show up anything too major,  although it did prove that I actually have a brain!

After being discharged home, I realised that my airway was closing down a bit.  It turns out, I had a mjor infection which was putting pressure on my poorly trachea, thus making it difficult to breathe.  I had to wait six hours in clinic to see the consultant to prove that I had an infection.  It was plain to anyone who looked at my neck that it was inflamed, why did they have to put me through the trauma of sitting in clinic for so long?  It was interesting to find out that they have bed managers deciding who has what procedure and when, not the consultants.  It's terrifying to think that administrators with no medical training are the ones deciding the medical fate of so many chronically ill people.  And yes, I am talking about the RNTNE.

They treated my infection incredibly well, once I was admitted, and I spent the week being infused with teicoplanin, aka targocid, which seemed to do the job.  I was also given fucidic acid for the fungal infection in my lungs, which did the job but also made me vomit on a four hourly basis.  Yuck.

I was home for a couple of weeks after that, but very very depressed.  I've done little more than read and sleep.  I made the decision to go back on the lithium after yelling like a nutjob at three people in one day.  I have to say that at least two of them really did deserve a good slapping, but there are probably more effective ways to achieve it.  So the drugs are all doing their job, and life is trotting along fine.  It's boring, but fine.

It's my birthday in a few days, and I have been given the most amazing present; a holiday!!!!  Thanks to my very generous relative, my husband and I will shortly be jetting away for a six day break.  So please pray to whatever God you believe in that my health will stand up to the challenge. I also was given my soda stream, Sebastian (named after the lead singer of Skid Row), because it barks (Bachs)!!!  You'll only understand that if you're a rock fan.  Apologies.

Just off to do my last neb of the day, and take the truckload of medications that I have to chuck down regularly.  I always end up forgetting the tegretol, but I'm sure the other three anti epileptics will take care of that, lol.  I take carbocisteine to thin out my lung juice and stop it from scarring up my lungs.  If you have thick lung secretions, it's worth discussing with your doctor.

Night night peoples, see you again soon!!  Keep breathing, it's good for the body....

Tuesday, 16 August 2011

Familiar places...

So, it's now wednesday and I am still back in hospital.  Which isn't too bad in itself, but they've run out of cheesecake!!  And the offer of a jam sandwich instead did not nearly cut the cloth, my friend, hahahaha....

I am a little fed up, to say the least.  I tried raising the issue of my feelings on them breaking my confidentiality with my husband, and talking to him first about the results of MY tests.  As far as I am concerned, if it's about me, then I want to hear it first.  I have a right to hear it first.  I do not wish to hear it filtered through my husbands non comprehending brain first!!!  That's like a game of Whispers set to advanced level, trying to decode a message from him.

Well, other than that little drama, I'm going through the same old routine, day in, day out.  Drugs at 6, 12, 6 and , ahem, 12pm.  Meals whenever they remember I'm here.  And that's it.  Oh, and I have had this banging headache for absolute days, which I think is related to the huge swelling on my neck pushing on nerves that run through my throat.

I had a couple of pieces of good news yesterday.  Apparently, I have been awarded a tax rebate, lol, of nthe grand sum of 41 pounds, and I get an 11p repayment bonus, whatever that may be.  I'm not complaining; as far as I see it, 41 quid is 41 quid, and I shall have fun spending it, 11p and all.  And then about an hour after reading about that, I got a phone call to say my new glasses were ready.  Hooray!!!  I haven't had new glasses for some years now, so I really hope these ones are okay.  I can't even remember what they looked like, so again, I hope I didn't make my usualy poor choice,

I've been keeping up to date on my usual health blogs, which offer me some interesting ways of dealing with illness.  To be honest, we're all in the same boat, as far as I'm concerned, but there is sometimes almost a competitiveness about what people say, a kind of 'mine's bigger than yours!' attitude.  I guess that people need to feel they are the sickest person in England sometimes, it's something the American's call terminal uniqueness.  It works like this 'what makes my illness worse than everybody elses?'...the answer is, of course, because 'It's mine!!'.  If it helps folks to cope, then who are we to criticise?  I will admit that when I was sat in the urgent referrals clinic the other day, and they were skipping people who needed to have their earwax syringed ahead of me, the snotty mess who was haemorraging blood and struggling to breathe, I did wonder a lot about people and their priorities.

I think we've all had moments like that!  I was in the pharmacy the other day, trying to get them to look harder to find my prescription for oxycodone which they claimed to have 'lost'.  They had my medication, all labelled up and ready to be dispensed.  They just couldn't dispense it, as they'd lost the prescription.  Anyway, I waited almost patiently, but certainly quite determinedly for over an hour.  I was in terrible pain and leaving without my pain relief was not an option.  And I watched many people come and go, one of whom was a twenty something woman who looked rather clammy and unwell.  The assistant told her there would be a long wait, but offered her a seat in their office to wait it out.  Just as they found my prescription, and were finally dispensing it, the young lady joined the queue in her rightful place, which was next; behind me.  A woman who must have been in her fifties then started yelling 'Oi, oi, 'you'....  I'm next, not her!!'.  And I turned around very slowly and said 'who are you referring to?  'Her me', or 'her, her?'...because it better not be me!!'.  And she started yelling 'well who do you think you are?'  And I replied 'I am the woman who has been waiting here for an hour and a half.  And 'her her', behind me, has been here almost as long.  She is next in the queue, not you'.  And instead of saying 'oh, sorry, I didn't realise', she then started ranting about how her daughter in law had just got back from holiday that morning and was complaining of a headache.  I said 'hangovers aren't usually classed as medical emergencies.  If it's that urgent, you need an ambulance, but if it isn't that serious, wait your turn'.  And she looked me up and down as if to try and decide whether she could take me on or not, and I just walked directly at her, forcing her to firstly get out of my way, and secondly, to distract her long enough so that the assistant could serve the poor patient young woman who was rightfully next anyway.

People make the mistake of thinking I am mentally weak because of my illnesses.  They get a nasty shock when they realise I am not.  Be the best person you can be despite your illnesses.  Don't let anyone push you around.  People take advantage of weakness, but as far as I am concerned, my illness makes me stronger, not weaker.  And that's why they never will win.

Have a lovely day folks, speak soon X

Monday, 15 August 2011

Lost in the system...

Hey guys,

Just wanted to say hi, and let you know that I haven't forgotten you.  I had my surgery which went pretty well, if you ignore the mild psychotic episode that I had immediately afterwards, which is another long and painful story.  I went home, as you do, and rested up.  But instead of getting better, I began to feel a lot worse.  So now I'm back in that same old bed, in the same old room, in the same old hospital, having whatever bug I've got nuked with the strongest antibiotics they can find.  It's the first time in my life that I've been glad of the constipation caused by the Oxycodone, lol, things could be messy otherwise!!

So, not much to report.  Lots of peace, quiet, rest and relaxation.  And cheesecake; there is always cheesecake.  I'm fed up to the eyeballs, ha, so things are moving pretty slowly, but when I start to feel better, the mood will improve.

Best wishes to you all for now, and look after yourself.  Eat more cheesecake, and all will be well.

Sunday, 7 August 2011

Throat slashing...

hey there!

off to my famous little bed in my famous little hospital in famous little London to have my not so famous little stent changed.  keep your fingers crossed for me that all will go well,

take care and a bientot!

Friday, 5 August 2011

It's just a purrfect day...

isn't the weather lovely and hot today?  unusual for sunny London, which is normally known for it's gloom and smog.  It's great weather for the soul, but not particularly good weather for the breathing.  It makes the air dry and dusty, and when your airway is damaged and you can't moisten the air in the natural way anyway, this makes for potentially huge problems.  I suffered badly over the past couple of years, and experienced some major obstructions and episodes of tracheitis in the summer.  It was complicated by my lung problems, which cause an overproduction of mucuous, and when you combine an overproduction of mucous with an inability to moisten lung secretions, what you get are big crusty formations of mucous clinging to, and blocking off, parts of (and occasionally all of) the stent.  The problem was equally bad when I had the tracheostomies, but at least then I could remove the inner tube and clean it out.

I had a T tube once that was a little too narrow, in about 2004, and basically it was a very hot day, my mucous was very thick and dry.  And then came the moment when I coughed and the tube blocked completely.  Luckily, I was in hospital at the time and they managed to save my life, but only by pulling out the tube after I had ceased to breathe, and my hard had stopped beating.

I guess what I'm trying to say is this; remember to nebulise; it might just save your life.  Remember to drink at least two to three litres of water a day.  And take all your medication as required.  I almost died from problems caused by dry mucous, and I did everything I was supposed to.  So increase your chances of survival and please please please look after yourself.  Hot weather is a killer to people with airway disorders/diseases, so keep a very close eye on yourself.

Have a lovely day, but if you feel your breathing getting tight or difficult; go straight to hospital.


Wednesday, 3 August 2011

Throat slashing

greetings peoples,

so, monday is the day i have my stent changed.  i personally think they just like practising on me, he he....  it's annoying sometimes that i have to go for these ops, espec\ially when there are other things i'd rather be doing.  it's inconvenient, is my point.  And that's why i get fed up with it all.

today i went for an eye test, which was fun.  the optician was lovely, and he flirted his way through it.  And then i went to get my swab results, and the good news is that they are all negative!!  obviously i am thrilled, as this means it will be easier to get clearance for work.

so everything is going fine, and i hope it is for you too.  take care in this heat, and look after yourself.

Tuesday, 2 August 2011

Another day, another.....

Well good morning all!!

Yesterday was something of a busy one.  I had to go into the city to take some documents into the new place of work, then I had a twenty minute walk up the road to my ENT appointment at the RNTNE hospital.  I was expecting to see the consultant as per usual, but the kind SpR took pity on my wilting in the heat, and he asked me in first.  I was pleased about this, because it was twenty minutes before my scheduled appointment!!  Anyway, he asked me if I'd mind him scoping me, so I agreed, and he said 'do you want the spray or not?'.  I said 'how good are you?', and he said 'great', so we went for it with no anaesthetic.  He really was good, it has to be said, and he didn't make me gag or retch once.  So I gave him a very good score out of ten; nine and three quarters.  Lol.

He said that the stent is pretty high up, so I presume that has been the cause of all my problems with it.  And because of that, they will be 'pleased' to change it for me.  So I'm 'pleased' about that.  Hehe.  So Monday 8th August, I am officially for the chop.  Can't wait!!

I have to go pick up my swab results soon.  I know they are negative, but even so, there is still that flutter of anticipation that they will reveal something nasty.  Keep your fingers, toes and everything else crossed for me....

Oh, it's just started raining.  Thank heavens!!  My tomatoes will be pleased about that.  It's also better for the breathing.  It was about 31 degrees yesterday, and I was seriously struggling.

I'm going outside to dance in the rain.  Why miss an opportunity like this?!  Have a lovely morning, and we shall catch up later.

Friday, 29 July 2011

Tired and irritated....and that's just my airway!

hey there everybody!

it's been a while, hasn't it?  Sorry about that; i've been running here and running there, and then i ran out of credit!  So annoying, especially as i then got an email from my new employer, asking me to download and sign some documents, scan some others in and email them, and check and sign some other information.

in theory, none of that was too hard.  But then I got to the occupational health form, which asked me 'have you ever been infected with/colonised with MRSA?  unfortunately, i have.  Many years ago, whilst in intensive care, i was nursed in a bed next to somebody who was riddle with it, and a nurse failed to wash their hands correctly, thus giving me the infection.  I was lucky in a way; i was only ever colonised with it, not infected.  the result of an infection could have been severe.  it took me something like six years to find out why I was at the end of every theatre list while i was in hospital, and when they eventually told me why my nurse of the day had been treating me like i had plague, i went absolutely bananas.  i said 'look, you've been telling me for years i have an infection; now you tell me it's this MRSA.  what you're not telling me is what can i do about it?'  i was terrified, of course, that i was destined to have it forever.  But it turns out that if you wash your skin with Hibiscrub/clorhexidine skin wash, and you wash your hair with it twice a week, you use the mouthwash corsodyl twice a day (which i was doing anyway), and you use a nasal gel called bactroban, you can in fact de colonise yourself.  So I did all that, and i had three sets of clear swabs which made me officially clear of the colonised infection.  i also has three sets of clear swabs done at the doctors for work, as i was going to work in a hospital.  since then, i have had repeated swabs, and probably had something like a further twenty clear swabs. 

and then i read the occupational health form, which requires proof of the clear swabs.  But instead of wanting swabs from three or four sites, as is standard, they want swabs from five sites!!  So now i have to go through all the stress and worry of waiting for results again.

it feels like just as i overcome one hurdle in my dream to go back to work, another one pops up.  All I can do is to remain positive, and tackle them one by one.  If i do my best, then i am sure that all will come out fine.

i have a sore throat today, quite deep into my trachea.  I'm hoping it won't be anything serious, as i've been very fatigued with it too.  It could just be the mania wearing off.  I suppose that several weeks of only sleeping two hours a night, if at all , would leave anyone's body feeling somewhat exhausted.

my message today, therefore, is to look after yourself.  Take all your medications when you need to, do all the nebulisers/percussion/physio when you're supposed to.  Eat well, and rest when you need to.  And just put yourself, and your health, first and foremost above everything else.  there is no problem in life that cannot be managed, so be strong and keep focussed on what you want to achieve.  And all will be well.

take care, have a lovely evening, and see you tomorrow!

Friday, 22 July 2011

What a great day!!!

Hey there!!

I wanted to tell you what happened after my week of busy job interviewing.  Firstly, the research assistant job; I didn't get it.  But I didn't get it because there were two other candidates with more experience, and as the guy in charge said, there is nothing I could have done about that.  On the bright side, he then asked me if i had a few minutes to talk.  He told me that he and his colleague had really been very impressed by my enthusiasm and interest in the study, and he had spoken to personnel about me.  Personnel had told him that as he had interviewed me already for the RA post, he didn't ever need to interview me again, and he told me that he and his colleague are actively trying to create a role for me.  And he wants to keep in touch!!  He gave me his mobile number and asked me if it's okay if he rings me every now and then for a chat about work/the study.  So I feel happy about that.  Technically, I passed the interview.  And isn't it great for the ego that he wants to actively create a job for me?

Now, this leaves me with a dilemma.  I went for an interview at a children's hospital yesterday, and it went absolutely really well.  The two panel members were lovely, and the competency test was easy peasy.  The initiative questions needed a bit of thinking about, but having worked in hospitals before, they weren't too challenging.  Anyway, I came home on a high.  This morning, I was about the dive in the bath when the phone rang, and it was the interviewer, who said to me 'How do you think your interview went?'.  I thought, oh dear.... I said 'I am so sorry, I waffled didn't I?'.  I said that I felt I could have been more concise and more focused, but other than that I think it went well.  She told me that my competency test was outstanding, my initiative test was very good, and I interviewed well; they really liked most of my answers.  She then said that on the basis of that, they would like to offer me a job!!  I couldn't believe it, I said 'Oh my word, I did not expect that at all', and she laughed.  She sounded really pleased to be hiring me, and I really really hope that I don't ever give her cause to regret it.  I'm so looking forward to this job, I really am.  It would be nice if I could do this job well, and every now and then do a little extra work for the guy from the psychology department.  He's the head of psychology, lol, and between you and me, he's pretty easy on the eye!!

This week has been splendid, I feel full of peace and love and joy.  This probably means I'm manic, but I'm enjoying it.  I really do feel all warm and fuzzy inside.  Mental illness can sometimes be fun, so don't let anyone ever tell you bipolar is all bad.  Btw, i did confess my illnesses at the interview, so they are very aware of what they are taking on. 

I wrote all this, I guess, to let you know that sometimes, with enough will and desire to do so, you can find a way around the toughest of problems and do whatever you want to do.  My new job will be five minutes away from my ent hospital, so should I have a problem, I am well within reach of excellent care.  In emergency, the children's hospital will be able to keep me going until I can get to a general hospital.  There are very few problems in life that don't have a solution.  My husband has pledged to take me to and from work in the car, so I won't be getting overtired, nor will I be aggravating by back problem.  TS will not manage me because from now on I am managing it. 

I hope you all have lovely days, and thanks so much for reading.

Wednesday, 20 July 2011

It's a midlife crisis....

Lol, I just had to write again.  I am having such a great evening.  I have such lovely and supportive friends, who are all sending me messages of support for my interview in the morning.  And I was browsing the net while I was nebulising, and I came across a band called Ugly Kid Joe, who were huge in the early 90s.  Then after a few more clicks, I landed on Faith No More, who were also a 90s band.  Anyway, I suddenly remembered a song of theirs, Midlife Crisis, and when I went to Itunes, I actually had enough credit to buy it!!  And it absolutely rocks.  There are days when I love my life.

I'm all prepared for the morning.  Nail polish is removed, hair has been washed, documents are in my bag, and I know how to get to where I am going.  My outfit is a nice smart dress, black with flowers on, and a navy blazer with a flower on the lapel.  I'm wearing cute little brown suede ankle boots.  I will function best if I am comfortable, which is why I have bypassed the idea of pencil skirts and unflattering trousers.  I look great in this dress, which is not an easy thing to achieve when you are 17stone.   I gained the weight by taking Olanzapine, not by being greedy.  I'll tell you about it some time.  Anyway, as I said, I will feel more comfortable in my pretty dress, and as a result I will also feel more confident, and I will perform better.  I am optimistic that I will be offered this job, I just don't know that it's a great idea given my state of health.  But I shall worry about that later.  If I can pass the interview, I'm sure I can get help with the rest.

Can you believe it?  My shift key has suddenly come back to life.  Strange....

I'm going to kick back and watch a little TV.  Have a lovely evening, and have some fun remembering a great song from your past. 

I forgot to mention, my lovely husband brought me in an ice cream from the van that comes around every evening.  Lovely surprise, and he even got me two flakes!  Everybody needs a husband like that :o)

Sweet dreams, for I am a bed.....


good morning peoples, i hope you are all feeling wonderful today.

i am writing this from the comfort of my nebuliser,  unfortunately i woke up this morning absolutely full of gunge.  My chest is over producing mucous, and as fast as i cough it out, it builds up again.  quite disgusting it it, i must say.  lol.

i am feeling okay ish.  my chest hurts, obviously, and my stent is a little clogged by the mucous.  I also have a sore throat, which is unusual for me, so I guess i have gone down with some kind of lurgy.  i shall try and keep moving, and hope that it passes.

my car went in for a service today.  I sincerely hope it does okay.  i don't really know what a service involves, tbh, but i hope my car feels better for it.  later on, i have a meeting at the advocacy group where i sit on the committee.  it's usually fun; they have some interesting nibbles, and we thrash out some fun issues too.  i most enjoy the personnel aspects, but i find all of it quite interesting.  I can't say that finance is my thing, but i am always willing to learn.  everyone should do voluntary work, it's enriching for the soul.

i am not even thinking about my postponed surgery date.  I am annoyed.  It's not like i am going in to have an ingrowing toenail removed; it is my airway, and i need it to stay alive.  not that the pen pushers who run the NHS understand that.  i happen to believe a hospital should be run by caring professionals, not by managers and administrators and businessmen.  Sure, they have their part to play, but it should be in the background.  let the doctors and nurses look after the patient again, and you will see quality of care increasing beyond anyone's wildest dreams. 

Sigh, don't worry, I have given up ranting for a moment.  Right, tomorrow is my interview at a very well known children's hospital in London.  I can't wait, I really think it will be a positive experience.  I am not too sure what the test will involve, but the last test I took for an interview was fun, and I did very well on it.  So I shall try not to worry too much.  The interview will, I hope, go well, but there really is no guessing.  They will either like me, or they won't, so whatever will be will be.  I certainly am qualified for the job, so no worries on that part.  Yesterday was such a nice experience, that I really hope tomorrow doesn't ruin it.  It would be nice to be offered a job after all this time. 

Have a lovely day folks.  My nebuliser is finished, so I am off to greet the big wide world.  Oh yeah, and to cough a lot, lol.

Tuesday, 19 July 2011

Something strange going on...

hey there.

well, today has been a little strange.  This morning, i had a job interview which i feel went well, but i think it unlikely that i will be offered the post.  i am pleased to have been shortlisted for interview, so what will be will be, and all that. 

i came home to a letter from the lovely RNTNE hospital, which is where i have treatment for my TS.  I was supposed to be having surgery this coming monday but, you guessed it, they cancelled and rebooked for august the 8th.  this is my major pet hate.  I turned down a job interview because i was supposed to be having surgery.  and they gave me no explanation whatsoever.  If they had said 'sorry, the surgeon is unwell', or 'the theatre fell through the floor' or something, anything, i would understand.  but it seems that i am too unimportant to merit an explanation, so my frustrations go unanswered.  i am so pissed off about that job interview.  It is too late now for me to ask them for a slot.  so thanks to the ent hospital, i yet again miss out on an opportunity.  i hate them.  i really, really hate them.  i hate that my life is ruled by them, and i hate that they don't ever offer me an explanation when they mess me around.  They make living with this illness very very hard sometimes. 

Monday, 18 July 2011

Lost in sickness

Today, i shall write a serious post.  perhaps....

Sometimes, when you have a very serious and chronic health issue, it is easy to lose yourself.  Life becomes all about hospital appointments, surgery dates, scan appointments, GP appointments, medication, pharmacies, repeat prescriptions, nebulisers etc etc.  All of that leaves very little room for me, 'M'.

I fought hard over they years to find a way to exist alongside my illness. I can lecture on the upper and lower airway, I know my relevant medications and doses, and am able to outprescribe any junior doctor.  This is useful, it helps me know why they are prescribing drugs, and what they are planning to do next.  I never ask to read my medical notes.  I just read them.  I can even read upside down. 

But I have a life outside of my illness.  I am engaged in mental health advocacy.  I have guitar lessons with the lovely Nick.  I have a lovely little vegetable garden.  It isn't much, but it is mine.  When you ask my friends who i am, they will tell you 'she is loud, she had big hair, she will do anything to help anyone in need, she has a husky voice, she plays guitar, she likes to bake, she makes hats, she gardens.....'.  The very last thing they would say is 'oh, and she has a very serious illness'.  so it is there, but it isn't all that's there.

the moral of today's lecture is that if you too have a serious illness, and i hope you don't, but if you do, you must not let it win.  if you have a life outside of your illness, even if the illness eventually kills you, it won't win.  but don't let the illness take your life from you while you are alive.  As BonJovi once said 'i'll sleep when i'm dead'.

if you are ill, damn well fight it!!!!!

Friday, 15 July 2011


Morning all, I hope you are having a fine and lovely day.

I woke up early this morning, but wasn't feeling quite right.  Which is why I dozed in and out all morning.  I am awake at last, but still feeling pretty headachey.  I don't know if it's related to my chest infection, but I have been feeling very warm and just not quite all there for a few days.  I hope it passes soon, for I have business to deal with, lol.

I feel a bit disappointed today.  Sometimes in life, we put our faith and trust in people, and we respect them and their advice.  But then you find out something about them, and it totally torpedoes everything you thought or felt.  I don't quite know what to do with the information I was given, and in my present state, I am feeling a bit deranged and deluded, but in the deceived sense.  I made a decision when I was 22, that I would proceed with my life in a totally honest way.  I would not pretend to be anyone I wasn't, nor would I adjust my behaviour to suit other people.  And I would be nothing but honest about my illness.  This does have it's upsides; I no longer fear that anyone will 'expose' me for perceived past transgressions.  And I now have a reputation for being 100 percent open and honest.  People feel that they can trust me.  I take out my frustrations here, or in my diary.  I write a lot.  But most of it is just unloading.  Very little of what goes in my diary reflects real life, but what I write in my Blog does.

So my point is, this is me.  I am me.  I am 31.  I have three spinal conditions, which will eventually result in me being paralysed from the waist down, and most likely I will be douby incontinent.  I do not look forward to that happening, but I try and accept that it will come.  I have subglottic tracheal stenosis, which extends from the lower section of my vocal cords downwards, completely filling the entire length of my trachea, if left unlasered it would very quickly be fatal.  My trachea is dead.  The surgeons describe it differently, they say it is 'necrosed'.  When they put the stent in, it takes three times longer than it used to because the scarring in my trachea has turned the tissue to stone.  I find it terrifying.  I am now too unwell for a tracheostomy to be supported.  I tried living with a T Tube, but again, that had to come out.  I look absolutely fine from the outside, but my insides are a mess.  As a result of all the infections and serious illness, ventilation and surgeries, I now have scarring on my lungs, and what they believe is bronchiectasis.  They suspected it because I have a problem with producing very thick and very sticky mucous.  When this tried to pass through the stent, it became lodged, dried out and stuck.  They call this 'crusting'.  It sounds simple, but gross, but this becomes a problem because the more build up there is on the airway, the smaller the airway is.  And I have suffered a couple of respiratory arrests because of the blockages caused by thick mucous.  It was terrifying, and I still have nightmares now.  Who wouldn't?

I am sick of having to prove how unwell I am.  It makes me mad that this society demands proof.  I think we should all treat people with the respect and individual consideration they deserve, but nobody does.  I had some woman push me over because she didn't believe i needed to sit down.  I collapsed, with some help from her hand.  She was duly arrested and cautioned, but this is an extreme example.  If everyone could just take a day to think about what other people around them live with, we would all feel pretty humbled.

Sorry, my head feels a bit wooly, and I'm not sure how much sense this is making.  Take care and have a lovely day.  I will see you tomorrow.

Thursday, 14 July 2011

Interviews galore, lol

greetings.... sorry, my shift key has died again.  we shall have to plug along as best we can...

so, today was an interesting day.  I had a great night, owing to the fact that when i took my pregabalin, the pain in my leg miraculously vanished.  oh my word, what a relief.  i found myself getting quite giddy from the lack of pain.  Anyway, that feeling continued into today, and i awoke feeling quite elated.

i had an appointment with stormin norm, which was quite enlightening.  he had his student, laura with him, and he was quite happy to sit back and let her take control.  so anyway, we discussed what happened on tuesday, and he told me it was like watching a very fast tennis match, hehe, dr d was very quick, so we had some jokes going on that were so quick even norm couldn't follow all of them.  he persisted in thinking that 'as you like it' was a quote from hamlet, and didn't believe me when i told him it was a play in it's own right.  oh dear.  so anyway, i spoke with him about the blood results, and my concerns about taking yet more poisonous lithium.  everybody seems convinced that i am hypomanic and getting higher by the second, but i feel fine.  wonderful even.  it just feels like they are all trying to kill my buzz right now.  c'est la vie.

i accused norm of being a nine to fiver.  i told him that i had called him time after time to get my blood results, and i would always get a message saying he was busy, or would call me back later.  it was something of a frustrating experience because at no point did he ever actually return my call.  I had to literally turn up on the doorstep looking deranged, in order to get an answer.  i was so worried about my liver and kidneys etc, and my heart in particular, but norm was just worried about getting home on time.  so i put this to him, and all he did was laugh.  it seems, my friends, i have his number.  so the moral of the story is remember, it's your life these people are dealing with, but to them, you are just another case.  they don't care a fig what actually happens to you.  so look after your own interests, and make sure they give you the answers you need.  And don't be afraid to ask questions that they find awkward to answer.  Be straight down the line, be honest, be transparent, and you will do fine.  whatever you do, don't rely on these people.  Because when they go hom at 5pm, they won't give you another thought, however distressed you may be.

i have another interview, this time for a ward aministrator job at a big hospital in london.  i am thrilled.  it would be nice to get back in the game, and if i could find a sympathetic enough employer, my life would be a lot easier.  so we shall see, eh?

my airway is still suffering from this mysterious throat infection, and i am dying for it to break, quite literally.  i need this to be better by monday, because i do not need to be contending with a lack of available air as well as interview stress.  when i go for jobs, I never cover up my scars by the way.  i believe that they are badges of honour, a sign that i have lived through what i might only describe as hell.  it was very painful for me to have acquired scars like that, and I reaslly don't think the pain of people looking at them really compares.  i am alive because of those scars.  If they don't like looking at them, then tough!!  wear your scars with pride, my friends, you have nothing to be ashamed of.

have a lovely evening, speak soon.

Wednesday, 13 July 2011

A new horizon....kinda...

Hey there...

Well, yesterday I had an appointment with my psychiatrist.  I actually felt okay that day, kind of like my usual self, but with the volume turned up to 20, lol.  So, we went through the motions of a normal consultation.  I told him I have had some bad days, but mostly, I am okay.  He's always very interested in my physical health issues, so we discussed the tracheal transplants that have been taking place all over the world.  I mentioned my frustration that they are still delaying it here.  Then he said something that referenced a Shakespeare quote.  He told me that he wishes to increase my lithium to 800mg a day, and asked what I thought.  I replied 'as you like it...'.  It took him a couple of seconds to process, and then he looked up and started to laugh.  He had a lovely laugh; it starts in the eyes, and spreads outwards.  It truly is pretty contagious, and I started to laugh too.  Only I then got seized completely by laughter, and couldn't stop.  Back and forth it went, and eventually I managed to stop.  But I must say, this won't have helped me in my struggle to appear sane.

Anyway, I had, as per usual, been up all night.  So having got my stressful appointment out of the way, I went home and snoozed for a few hours.  I was woken my the phone ringing, and it was a guy calling to tell me that I have been shortlisted for a research asst job I applied for, and I have a lovely interview on Tuesday.  I would love this job.  It's interesting and varied, I would get a chance to use my degree and challenge myself to achieve new things.  And basically, I would be paid quite handsomly for doing something I love.  Which is all that anyone wants from life, isn't it?

My airway is being difficult.  I have had this annoying chest infection, that has been lingering for quite some time.  It's awful, it's basically a whole lot of mucous that has settled into the sacs of my lungs and gone very thick and gluey.  It takes a combination of chest percussion, medication, and nebulisers to loosen it up.  And still it isn't coming easy.  This is one of those days when I find myself chained to the nebuliser.  Normally, I would be feeling very distressed, very upset.  But probably as a result of the increased lithium, I just feel somehow blank.  The emotions are in there, so my brain tells me, but they are struggling to overcome the giant chemical barrier that the lithium creates.

Speaking of lithium, yet again, my blood level is point 33.  Ooooops....hehehe

Have a lovely day, my friends, and be safe.