My Latest Doctor's Appointment

Ventolin, the inhaler above, is the one that I use for quick relief. It contains Salbutamol and is the first inhaler prescribed for basically everyone with asthma. And for basically everyone with asthma, it works.

But for a tiny fraction of people, it doesn't. And that includes me.

And of course it includes me! I'm not exactly normal, am I? Eh well..

Back to the point. So I went to see the doctor, and I also got a chance to ask what they were treating me for, and what would happen next.

I told him about my concerns regarding Ventolin's inefficacy, and mentioned Xopenex (Levosalbutamol) to him. He checked it out and sadly, it would appear it isn't approved or prescribed in the UK, and in fact the only others that are for asthma are in dry powder form, which would mean me having to breathe in hard, fast and deep (oi, no innuendoes please!) and then holding my breath for at least 5 seconds, none of which I can do, least of all when I'm having an attack. He's told me to ask the nurse about this at spirometry, and she'll show me the different kinds of dry powder inhaler, how they all work, and we can see if there's anything that requires less of the above, which may just work for me.

He said that my treatment was currently for suspected asthma, and that diagnosis would be clinched if the steroid inhaler, Clenil Modulite (Beclometasone Diproprionate), was working i.e. if my lung function has improved, then I have asthma. He told me that at my next spirometry, should that be the case, I would get a combination inhaler. Combination inhalers include:

• Seretide (UK)/Advair (US) - a purple inhaler containing Flixotide (Flovent, Fluticasone) and Serevent (Vertine, Salmeterol)
• Fostair - a pink inhaler containing Beclometasone Diproprionate and Formoterol
• Symbicort - a red and white inhaler containing Budesonide and Formoterol
• Dulera - a green and blue inhaler containing Mometasone and Formoterol

Combination inhalers contain a mixture of a certain dose of a steroid (these aren't the kinds of steroids athletes use, nor the type that cause specifically bad side effects) as well as something called a 'long-acting beta-2 agonist' or 'long-acting bronchodilator', which does the same job as quick relief medications, but they keep your airways open over a longer period of time. These should never ever ever be used on their own i.e. without a steroid inhaler, and they equally should not be used for quick relief.

I guess I will probably get Fostair, because that contains the steroid I am already on, but hey, who knows?

He also did a peak flow on me, which hit a beautifully crap 200. That's great. Not. The first time I tried, I thought I could do better. The second time I tried and got the same result, the doctor remarked that it was a "very lady-like blow". The third time, I got the same result, so we figured it was probably the right one. I think I'll ask to do a PEF (peak flow) at my spirometry in..less than two weeks' time, to see if it has changed. I might ask for a peak flow meter to see if I'm better when I think I am and worse when I think I am.

The last thing the doctor told me is that I need to work out an Asthma Action Plan with my nurse. There's something like 85% of asthma patients in the USA who don't have an AAP (sorry about my USA figures, I just read a lot of American asthma blogs!) and this is really bad, because these people don't know when to up their dose or how, or when to go to the ER/ED/A&E vs. when to call their mum. So I need to sort that!

He ordered an eosinophil count to check I haven't inherited my mum's Eosinophilic Bronchitis (that's even harder to type that it is to understand!) and also a Specific IgE test which looks for allergies to dust mites, cats, dogs, pollen, the top 12 food allergens, and some other stuff I could be allergic to/triggered by.

Well, I'll keep you in the loop!

~Liz

SU4S1

A little while ago, I had the idea to kickstart an initiative called 'Stand Up for Someone', with the nickname 'SU4S1'. It was an anti-bullying initiative that I headed for a while before other things took over. I started it from experience (maybe another day) and anger, and it really was a bit of a flash project. It never really took off. But I was looking through posts of mine on a long-abandoned blog when I found the post below.

I'd like to get SU4S1 rolling again, so please, spread the word, and I'll do my fair share too.

***

We are SU4S1 and this is our Anti-Bullying initiative.

SU4S1. Stand up for someone.

Have you ever seen someone being picked on? Bullied? Roughed up? Abused?
Maybe you haven't even realised what exactly you were seeing.
Do any of these ring a bell?

• the argument on Facebook;
• the captioned photograph;
• the snowball fight;
• the chase at the rink;
• the bag being thrown around.

Whether you realised it or not, these could all have been forms of bullying. The argument could have been friendly banter, but it could have been cyberbullying. The captioned photograph could be a joke between mates, but it could have been posted without consent. The snowball fight could be harmless fun in the snow, but it could be a dangerous way of physically abusing somebody. The chase at the rink could be a game of tag, or a race to see who is fastest, but it could end up with someone being hurt with the other person's skates. Maybe you don't instantly recognise bullying in some of its forms.

This is because teachers, parents and websites don't always give you the lowdown on what's what. They tell you what everyone tells you. They don't tell you all the risks, they don't tell you all the things to look out for; instead they tell you so-called facts and pointless figures...rather than showing you what you could do to help a sad statistic feel like a person again.

Our guide here at SU4S1 comes from people who know. People who have been there, done that. People who can tell you what you really need to do.

So, what is bullying?
Well, if it is repeated, and a person is hurt or upset or even just confused by it, it's bullying.
Here are some things you may have seen:

• Physical: pushing, hitting, shoving, headlocks, slapping, tripping, barging, grabbing, strangling/choking, pulling, gripping, scratching, hair pulling, chinese burns, burning with lighters/cigarettes/matches etc., beating with sticks/chains/belts etc., twisting arms/hands/legs/fingers round, bending fingers back, kicking, standing on someone or someone's body, taking someone's hat/bag/scarf/gloves etc. from their body, crushing hands, bear hugs, slamming someone's head against something e.g. a wall, shutting someone's finger/arm/hand etc. in a door, flicking, throwing things, spitting, throwing snowballs or other objects, shooting, flicking objects, jabbing, tickling, physically restraining a person (holding them back), squeezing, headbutting, cutting/stabbing, sitting on someone, pinning someone to the floor or a wall, whipping, poking, prodding, pouring water on someone, forcing someone to eat/drink something through force-feeding etc..
• Verbal: name-calling, threats, rumours, shouting at someone, making noises at someone, saying cruel things about a person or anything related to them e.g. friends and family, remarks about skin/hair/eye colour, remarks about height/weight/size, remarks about speech/accent/impediment etc..
• Psychological: threats, turning people away from someone, spreading rumours, telling people they cannot be friends with someone, singling out, making and enforcing impossible rules for one person, if rules are not kept then making unreasonable or unpredictable punishment for the person, public humiliation, telling somebody they are worthless or fat or gay, telling people repeatedly that they should kill themselves, forcing someone to do something, demanding money etc..
• Sexual: touching of any genitals or erogenous areas, rape (defined as any unwanted sex in which penetration occurs), slapping/pinching someone's bottom, forcing someone to watch porn, forcing someone to touch them, grooming, attempting to rape someone, making sexual remarks about someone, threatening to rape someone etc..
• Cyber: posting videos or photos against someone's will (or without consent and refusing to remove them), posting any kind of derogatory or unkind stuff about a person, liking a blatantly derogatory status/retweeting the same, anything under verbal and most of psychological which is done through text, email, Facebook, Twitter, Tumblr, Flickr, YouTube, Blogger or any other social networking site (including SnapChat) etc.

What Can Happen?

This little section just tells you about three possible long-term effects of different kinds of bullying and abuse. There are many, many more but these are just a few.

• Post-Concussive Syndrome: this is the term for the confusion, disorientation, forgetfulness, headaches, dizziness and amnesia that continue on for a long time following trauma to the head. In cases of physical bullying or abuse where trauma to the head occurred, PCS may be developed. It can last for years, and medical treatment should be sought as soon as symptoms start to develop, usually a few days or weeks following the first head trauma. Symptoms are: confusion, dizzy spells, short-/long-term memory loss, trouble sleeping, trouble finding words, trouble remembering things, headaches, nausea and seeing stars or struggling to focus eyes. Some less common symptoms are glassy eyes, unusual emotional responses (e.g. mood swings, or suddenly bursting into tears) and slurred speech or trouble speaking.
• PTSD: this is short for Post-Traumatic Stress Disorder. This can happen to people who have experienced anything traumatic, whether it is war, witnessing crime, or being a victim of bullying, abuse or other crime, or sudden death of a loved one. Symptoms of PTSD are intrusive, upsetting memories of the event, flashbacks (acting or feeling like the event is happening again), nightmares (either of the event or of other frightening things), feelings of intense distress when reminded of the trauma, intense physical reactions to reminders of the event (e.g. pounding heart, rapid breathing, nausea, muscle tension, sweating etc.), avoiding activities, places, thoughts, or feelings that remind you of the trauma, inability to remember important aspects of the trauma, loss of interest in activities and life in general, feeling detached from others and emotionally numb, sense of a limited future (you don’t expect to live a normal life span, get married, have a career), difficulty falling or staying asleep, irritability or outbursts of anger, difficulty concentrating, being on red alert all the time, feeling jumpy and easily startled. PTSD is a sensitive area and should be treated with care and warmth, rather than hostility and disbelief. 
• Depression: this is common in people who are victims of bullying and abuse. Main symptoms of depression are sadness, a gloomy mood, dark thoughts, a feeling that life isn't worth it, loss of interest in activities once enjoyed, being dissatisfied with everything, not wanted to get up and do things, fatigue, not talking much etc., although these vary with each person and some people may experience different symptoms.

What Can I Do?

At SU4S1, we believe it is a 1-for-2 situation. With every 1 person who likes the page or reads the blog, we expect them to stand up for at least 2 people. But, although we are a cause dedicated to getting people standing up for each other, here's a list of other things you can do to help the person in need.

• offer them a drink or a bite to eat following an incident. Drinking in small sips can help to calm and soothe someone who is angry or upset or shaken.
• offer them something sugary e.g. a sweet or a fizzy drink. The sugar is good to help calm the nerves and help someone who is shaken up to relax. Sugar is good for shock and fear, so having something sweet will help to calm things down.
• help clean up any bruises or cuts or other marks. Even just wiping a bit of dirt off a knee with a wet-wipe can make someone feel a bit better after an incident.
• tell them good stuff. Like how nice they are, or that they are pretty, or they've got plenty to live for, plenty of friends etc.. This may help a person feel better about themselves.
• offer to walk them home. Some people feel safer if they have someone on hand to make sure they get home ok. 
• allow them to talk with you about it, and remind them you are there to listen.
• respect their wishes. Remember, some people may want to be alone rather than have someone walk with them, for instance. Some people may not want to talk about it. Some people may just want to cry, where some people will pretend nothing happened.
• tell them you'll stand up for them in future. If you didn't stand up for them then, stand up for them the next time. It's a nice thing to hear from someone, so just remind them.

Give Me Some Stats!

Finally, we'll round off with some stats. Stats about bullying...and projections for how we at SU4S1 want it to change, if everyone goes 1-4-2.

• In the UK last year, about 65-70% of children between the ages of 0 and 19 reported being bullied. That is about 10,191,150 children.
• About 50% of these children reported being physically hurt. That is 5,095,575 children.
• 34% of those children hurt required attention from a doctor or the hospital. That is 1,732,496 children.
• 3% of these children's attacks involved a weapon. That is 51,975 children attacked with a weapon.

If 100 people went 1-4-2 that year...

• 10,190,050 children would have been bullied.
• 5,095,375 children would have been physically hurt.
• 1,732,296 children would have required medical attention.
• 51,575 children would have been attacked with a weapon.

So what could happen if 500 people went 1-4-2 that year?

• 10,190,150 children would have been bullied.
• 5,094,575 physically hurt.
• 1,731,496 requiring medical attention.
• 50,975 children attacked with a weapon.

And what if 500,000 people - that's 1/ of the UK - had gone 1-4-2?

• only 9,191,150 children would have been bullied.
• only 4,095,575 physically hurt.
• only 732,496 requiring medical attention.
• and maybe only a couple of children attacked with a weapon.

Of course, that's still nearly 10,000,000 too many children being bullied. But we can change this around.

We are SU4S1 and this is Anti-Bullying Week 2013.

We are SU4S1 and this is us.

Top Ten Reasons to Feel Good About Being Short

I suppose there are plenty of bad things to being short. 

For instance, I find myself lowering music stands and piano stools everywhere I go because I have to see. I can't reach the ground from most seats. I'm stuck with a 3/4 size cello and never will upgrade to a 4/4 size cello. I have to stretch to span an octave on the piano. Us shorties often get picked on. I haven't reached 5' yet as, at the age of 15, I'm sitting at a pretty dismal height of 4'10". This isn't going to be a cheesy, 'oh-isn't-it-great-to-be-short' thing. 

I'm not even going to mention the 'small spaces' topic. Ohhh no. I cannot stand that, when I complain about being short and some tall person says "Oh but you can fit into small spaces!" as if that's the most exciting thing in the world. I suppose it is for hide-and-seek but for the rest of life? It really isn't anything special.

But being short is. 

Vertically challenged, slightly lower to the ground, fun-sized, compact, shortbread. Whatever you call it. And here are my Top Ten Reasons to Feel Good about Being Short.

***

1. The Discounts when we can pretend we are younger than we are. Usually is an insult, but can be used to our advantage. "Yes, Pizza Hut, I'm 15. Oh, discount for under 12s? Oh..oh..I didn't know! How old did I say I was? I said I was 12..so I'm eligible?! That's fantastic!" ;-)

2. Dynamite comes in small packages, right? People don't expect it. If I say I'm 15, people seem surprised, and say, "Oh, you're small for your age" as if I didn't already know! But eh well, they probably don't realise what a punch I could pack if I wanted to…

3. We are Better for the Environment. Yes, it is true. We have a much smaller carbon footprint than average/tall people of our age. This is a good one for all you knee-high green beans out there. When people complain that the youth of today are the reason for climate change (as they do) then we can just smile sweetly and say "but I'm better for the environment than you" :D

4. Shorter Person, Stronger Bones. A pretty weird but scientifically proven fact that shorter people tend to have thicker bones. This means we are less likely to break our bones, and therefore have an advantage in combat sports, paintball (yes, we do!), speed skating, football, rugby, field hockey, ice hockey..and life in general.

5. Speed depends on your fast/slow twitch muscle fibres, your muscular makeup as a whole and your fitness. But height is such a massive factor in it. Yes, you get short marathon runners, and tall sprinters..but in general, shorter people are faster runners. So if we combine No. 2 with this one, with the disadvantage of being picked on...we can punch them where it hurts, then sprint off before anyone else has the chance to think!

6. Being the Baby of the Group is sometimes diminishing but often fun. People want the opinion of the 'short one' and you can stand on a chair to talk to them without it being a health and safety hazard ;-)

7. We are Less Susceptible to Brain Damage. Alright. That's a lie. But what I mean by that is we can ignore those 'Mind your Head' signs. We don't have to duck at low doorways. We can just grin and walk straight through >:-)

8. Height Restriction? Nah, not me. The only thing I feel cancels out the problem of rides we're too short for, is places we are short enough for! Soft play centres for instance. The warm kiddie pools at swimming baths. Some caving expeditions which go into small caverns with very low ceilings that even we have to bend down for. And what's more, we can make our taller friends jealous as anything by doing this :P

9. We are Cheaper in the long run clothes-wise. Do you know why? Because statistically, people who are under the 5th percentile for their age grow much slower than people who are over the 50th percentile. This may seem depressing at first thought, but think about it in terms of clothes. How often are our taller friends complaining that they've grown out of their favourite sweater/jumper/t-shirt/shorts etc.? But we can stay in ours for longer. Our favourites might still be our favourites 4 years later (yes in my case!) and the same applies to shoes. So we buy less. So we cost less :o

and finally…

10. Let's Make it a Long Life and enjoy every minute because we have a longer life than our taller friends! Of course, this sadly doesn't account for terminal illness or accidents or other out-of-the-mist things but in general, we get longer lives. The chance to be better for longer. Trust me, that's a good thing! :-)

***

Bye for now!

Liz △

Poetry and Old Ideas

I was flicking through my old documents earlier on the computer, seeing if I could find anything I had forgotten about. Ones I had written long ago, flash ideas which seemed great for about ten minutes before the excitement subsided and turned to boredom - hello, Asperger's - and I found tons. Hundreds of documents with names like 'something.txt' and '1111' and 'moo', simply because I couldn't be bothered thinking up proper names for them (God forbid I ever get a job as a secretary), names which are pointless as anything but somehow beg intrigue, spin curiosity within me, implore me to open them just to find out what in this document could possibly have possessed me to give it a name like 'idontcarejustopenthisnowww.txt'.

Usually, it really is just rubbish. And a lot of it.

But interspersed among this rubbish, the 'moo's, 'what's and 'thingy's, I found some poems. I admit, they aren't my best, but I find they are a reminder, a s tark and sometimes painful reminder, of the past.

The good times, the bad times. The ups, the downs.
Memories, fears. Reality, dreams.

Here I have compiled a few for you to read for yourselves.

Make what you will of them. But someday, you will check your computer or that pile of papers or the files in that box somewhere…and you will find things you had forgotten all about.

Enjoy.

***

Fit In/Bit Different

Everyday I try to fit in

To a place where I'm seen as strange and new,

But normal people-don't they read my feelings?

Confusion and fear to name bjust two.

Some they shove me or kick me and hit me,

Some mock my accent, the way I speak,

And now, each time I pass them by,

They bring me down and make my skies bleak.

I can't change the bus I get,

The council says it's not on the cards,

So just for now (though it feels like forever)

I'll have to be tough and strong and hard.

Where I was born, sticking up for ourselves

Was what we were taught to do,

But now I'm told ignoring them works,

And I just don't know what is true.

But when I start singing, my world comes alive,

Each colour so vibrant and clear,

And the bow on the strings makes the whole room resound 

With the tone I just love to hear.

On my drums I drill the rhythm hard,

Race up my ukulele, hitting each fret,

Get on my pattens, scarring the drains;

But because I'm that bit different, this pain is what I get.

***

Mirror Image

I lift my hand up, you lift yours the same,
I reach out to touch you, you copy my move again.
A tear runs down my left cheek, a tear down your right,
And in our silent crying, our wet eyes catch identical light.

Wiping eyes together, we take each other in,
The sameness of our hair, our clothes, our faces, our skin.
Knowing each other's history, the spitting image of our own,
No need for words to be spoken, or emotions to be shown.

Hand down, hand down, we stand there for a while,
And both of us attempt, but never manage, a parting smile.
I turn away, you turn away, our backs face each other now,
I step away, you step away, we know each other's route somehow.

Looking round, the two of us, and close them shut again,
And deep inside the pair of us, we know identical pain.
Mirror images, it feels so strange, and in sudden anger I throw a stone;
And mirror image shatters now,

And I am alone.

***

To the Couple Standing Underneath the Tree

To the couple standing underneath the tree
sheltering from the ceaseless rain:
are you waiting for summer to begin
or for winter to end?

To the couple standing underneath the tree
looking out to the stars:
do you know how special love is?
Do you know how lucky you are?

Every time I pass by you are there
just standing, hesitating.
Oh what I wouldn't do to have as long a life as you:
I wish I had the time you are wasting...

To the couple standing underneath the tree
as the blossom flutters to the ground:
Why do you wait so silently,
never making a sound?

To he who never reaches out his hand
to stroke her hair
to she who never tells him how she loves him
while he's still there
to they who never take a break from the silence
of their day
to kiss - why wait?

One day it might be too late…

To the couple standing underneath the tree
as the light slips away
Can you hear the birds are singing a sad song
as you go your own ways?

I wrote this one as a duet for a musical I started in which the two main characters have terminal illnesses. They are in love, but neither knows the other's feelings yet, and from their hospital rooms they see this couple always coming to the same tree, every single day, only ever talking. This is the part where they are both looking out of their respective rooms together and they sing this song and in doing so finally come to realise that they should tell each other how they feel.
However, the last line is poignant as only a minute later the girl crashes (she stops breathing) and the boy realises maybe it wasn't just too late for the couple underneath the tree…it might be too late for him.

***

NaCl/The Salt Song

We went to the sea to mine for Au,
We went to the limits to sift the whole thing through
We went from the smallest ponds to the H2O of hell,
But all we found was NaCl

We went to the market in a seaside town,
We set up a stall to sell what we had found,
We told the local shoppers and the tourists as well
how all we'd found was NaCl

Back to the sea, and the H2O of hell,
Five years on from when we first began to sell,
We'd been in all the papers, and the radio as well...
...and still we found the NaCl,

all we found was NaCl

***

Well, there's a few. But not all!
Expect more some time in the future.
Bye for now!

~Liz

Flashback Friday: Overheard in the Hospital

Nurse: I'm here to check your vitals!

5yo boy: It's ok, I know it's really called a penis!

Nurse: ...

Clenil get any worse?

Woah.

So that joke was bad even for me.

But hey!

I went back to the nurse a week-and-a-half ago, for a spirometry (test to see how my lungs are working) which was scheduled..6 weeks beforehand.

Basically, I was half-diagnosed with possible-maybe-ish mild intermittent asthma back in September 2013. Spirometry then and in the following January were fine and I was given a Ventolin and sent on my way. It was fine for a few months and worked when I needed it.

Then, I started to find I was needing it more. Then it became less and less and less effective to the point where I was using about 5 puffs a day. So I went back to my doctor and got a spacer and scheduled a spirometry for me.

I started to feel it was less effective even with the spacer. I started to wheeze audibly at night, and more and more I have struggled to get air over the past few months. It was originally just sporadic, occasional. But for a few months it has been constant, worsening. I developed a chronic cough, which worsened considerably in the few weeks between my appointment and my spirometry.

The nurse heard my cough, and I did the spirometry, and my FEV-1 was 2.17 which is bad for a singer (our % should be greater than 100% of predicted flow, mine was 70%) and it kept dropping each time I tried it.

We talked for a bit, she listened to my lungs, and said she wanted to try me on a steroid inhaler and we would review my lung function in 6 weeks (now 4.5 weeks), so she wrote me the prescription.

Went to pharmacy to get it filled and it seemed like things were going ok.

And then there was the spacer.

I started to notice that there was a bit of mist coming out of the top of the spacer when I sprayed in the Clenil Modulite (my new inhaler). It kept happening, so they gave me a new spacer, but it was happening with that, too. Now they've given me an AeroChamber for now, while they chat to the manufacturers to make sure it was just a little defect. It wasn't a huge loss, but it probably shouldn't have been happening. Sad, I liked my old spacer :-(

It seems to be working, but I'm getting these little 'drops' between my morning and night doses. I take 200 mcg at 7:00 in the morning (two puffs) and the same at 10:00 at night (medium dosage) and it works for a few hours, but around about 5:00 in the evening, it stops working..I'm going to talk to the nurse about that next time I see her unless it gets worse, in which case I'll see what the pharmacist says, and go from there.

So, new puffer enters the house. Will this new brand, Chiesi, live up to the expectations of more consolidated brands like GSK (Ventolin, Flixotide etc.)?

We'll have to see.

~Liz

College.. i.e. BAM

1.5 months into college life now..and it's going well!

I'm doing Biology, Chemistry, Spanish and Music at A-Level. I have a friend doing Biology, Maths, German and Music at A-Level. People look at her subjects and say, "You should be a speech therapist!".
They look at mine, and they say, "What a weird combination!"
Cheers, helpful people!

Starting at a new college in a new city with a new bus and somewhere in the region of 2,300 students, of which you know..5, is exactly how it sounds; flipping terrifying.

The first two weeks or so consisted of classes with mute students and teachers making a lot of effort to get us to make human sounds. We had ice-breakers in the first lessons, in everything except tutor (which happened in the fourth week), and although they were fun and helpful, I still don't know the names of the people I am sat next to in my lessons (sorry, I lied to you all, I can't remember your names really!) and I muddle along by making noises in their directions until I get their attention. I do have friends though!

My tutor ice-breaker was..well, interesting. We were shown a picture of a cartoon chicken and split into groups of about four each. In our groups, we had to name the chicken using an amalgamation of all of our names (Nicolizaria was the result of ours, we think it sounds like a disease) and then we had to make a story about it, which couldn't include references to KFC, Chicken Run or the chicken crossing the road. Our tutor, PM, left us to it, so we had a bit of fun: our chicken was supposed to be getting a plane from Vietnam to Moss Side in Manchester, but halfway through the flight realised he was on the wrong one and was headed to the Democratic Republic of Congo..when he got there, he was kidnapped by Hagrid and taken to his mobile home in the DRC, where he was knocked out, and when he woke up he was in a bubble bath with PM.
Not bad, for five minutes, and quite amusing for us.
But.

Our tutor stopped us all and asked us to read them out. He seems 'sound' enough, but making those kind of references..well, we didn't know how far we could go. We looked at each other and immediately said, "I'm not reading it out!"

Eventually, it was read out and taken in good jest (phew!), so all's well.

Lessons are great, and bus times might be stupid but hey, can't help that!

I can't say it's all been bunnies and roses. But so far, things are looking up.
Right up.

~Liz x