Saturday, 21 January 2017

Disability equality isn't always equal

This country (or in most cases, the world), is pathetic about disabilities and those who have them. I can only speak from my own experiences but I'm a mere drop in the ocean of those who basically get kicked in the teeth, even from services that are actually meant to help.

Case in point, my most recent experience which was the cause to write this post.

The parking on my street is a nightmare. It's so hit and miss, and no one cares. I've lived here for a year and a half and maybe half the time, I get parked on my own side of the street, and if I'm lucky (or it's well timed) I can park outside my own door. All the other times, I'm parked anywhere from on the other side of the road, to round the corner and down the hill. A lot of this is due to the fact my neighbours managed to all miss the parking portion of their driving lessons and forget any parking etiquette; they'll usually park as close to outside their own door as possible, ignoring where the other cars are parked. They sometimes block me in too. I should point out theres no markings on this road, which is probably one of the main causes for the shitty parking. But this bad parking means that people will often take up two spaces. And this isn't just a bad assumption of where others may park, they directly ignore where the cars are, refuse to line up and park bang slap in the middle of where two cars would comfortably fit. They're like those dickheads who park over two spaces in supermarkets cos they don't want their car dinged.

It might not seem much to you, but to me, when I'm tired, when I've been to the gym (which is considered essential exercise and physio, before you launch on me) or if there's anything in the car that needs bringing in, its a nightmare. It's just as bad if I'm leaving the house to go to the car. Especially in winter or any cold weather. If I'm going from a warm house to a freezing cold outside, it makes me cough so much I often can't start driving for several minutes. This obviously gets a lot worse when its added with trampling up and down hills to get to the car. I've sometimes actually been parked closer to John's parents house than my own, and they live a 5 minute walk away. I've often left my disabled badge on the dash to hopefully demo that I need the space, I figured it was easier than knocking on everyones door like some sort of Jehovahs Witness, and giving then a lengthy explanation on why I need to park there.

So I decided to apply for a disabled space marker. These aren't enforced; they're more like a polite request to say I need this space more than you. But I figured it was my best chance of actually being able to park near the door. This process takes 3 months and the form is fairly pathetic. They don't ask for any reasoning why parking is difficult or even ask to show proof of your blue badge (they do when you're approved, but I imagine asking to see it first may avoid any people trying to chance it?)

The process involves having someone from the council evaluate the road and see if you're too close to a junction or roundabout (this means an automatic no if its not safe, the road also has to be wide enough. These last two points meant I was refused a space outside the flat we previously had). If these are approved, then they will ask your neighbours permission. I am not kidding. They actually ask people who don't know whats wrong with you if they mind having a disabled space painted on the road.

I'm not sure how many it takes, maybe its a majority vote, maybe it only takes one person, but I was refused my space. All I was told that one of the consultees objected to it. I don't even know if they were told who was applying for it, because if so, surely that would sway their decision if they had a personal dislike for that person? I get on with my neighbours, that I'm aware of. While I hate their parking tactics, I've never banged on their door and told them to move. I've argued with someone on another street who had bonfires monthly to burn garden waste, which resulted in reporting him to the council as I couldn't leave the house when he did this. Luckily he hasn't had any fires since. I say lucky, I mean for him, as he could be fined up to 5 grand. Another neighbour asked me to stop coughing so loudly, and stared at me with a blank face before continuing to tell me, but the coughing is very loud and our houses are terraced, when I told him I had a lung condition so it couldn't be helped.

I have emailed the lady who I'd previously emailed asking for an eta on the result of the application, asking if the result can be appealed. I also gave some points to why parking is so difficult and how my neighbours have so little disregard, including someone 2 doors down asking me to move my car so a van could park outside this morning. I said yes before I thought - I can be far too polite on the spot would you believe! - but afterwards I thought of how I should have said no, and told him to move his small van and his wife's massive estate car, for once.

(I'm currently parked across the road and on another street. Go figure).

Obviously when this letter came through my letter box, I vented my frustration on social media. No one else seems to understand why the neighbours get the final say, and I think thats a very logical reaction. Why am I made to park further and further from my home because someone thought it would get in the way of them having a space? Why do people who don't know my health problems get to decide if I'm able to park close to the door or not?

It's not just parking that's hard. People stare at you for having a badge if you don't have some sort of obvious physical defect or aid, they glare at you for coughing, they argue at you for sitting somewhere they were about to sit, even though your back is hurting so much you're in tears and literally couldn't move any longer. They get annoyed at you for being deaf, they make things difficult when you mishear them, they think you're rude or being annoying when you ask them to speak clearer.

You get denied benefits because you 'look healthy', and without knowing your medical history, declare you fit to work, and you get denied a space on the bus because moving a buggy for your wheelchair is too inconvenient, or if you don't openly look disabled, they think you're just lazy (same goes if you don't get up out of a disabled persons seat for another).

In the past, I've been in a wheelchair and people speak over me, to the person with me, to ask a question I could answer. They grumble or stare in disbelief when I get out of the wheelchair. When people have found out I'm deaf, they stop speaking to me and speak to whomever is with me, and if they don't know I'm deaf but speak in a way I can't hear them (turned away, mumbling etc) they assume I'm rude. I've been spat at for parking in a disabled space and, yelled at while someone demanded to know if I'm actually disabled while they stared at my legs. I've also been told to move out of spaces for another person with a badge.

I'm so fed up. I'm this close to knocking on all the doors and asking. I have a suspicion on who could have said no, some are so lovely and they're literally the perfect neighbour.

However, people surprise you.

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Tuesday, 22 November 2016

Bye bye pred

I can finally wave goodbye to the little bugger that is prednisolone!

I've been on 10mg of pred every day since I was about 16, after a bad patch of pleurisy and also finding out my ABPA had come back to visit and sent my IgE levels to a ridiculous 2000 (they're meant to be below 500 from what I can find out). Because it was the allergic response to aspergilliousis, I was given pred rather than anti fungals. I'm not sure why, you'd have to ask my doctor, but I think it was more the allergy that needed treating as it can cause tonnes of lovely issues.

Anyway, it took years for my IgE to down to more acceptable levels, so I had to stay on 10mg long term. At the time, it also had added bonus of helping the pleurisy I had too, which, if I remember rightly, was an absolute bitch that hurt daily. Thankfully now its not as constant, but still there. When it's bad, I have to increase my pred to 30mg for 5 days, but also go to clinic for an xray as the pain is similar to a collapsed lung - they need to rule that out to be sure.

I've wanted off pred for ages, although I think its a mixture of hating the evil tablets that leave the most disgusting taste in your mouth if you're not quick enough when you're swallowing them, and also because I don't think they're doing what they should anymore. Pred has horrible side effects, and although its hardly a bad thing that I don't get them anymore, I also don't feel the benefits (I'm so used to side effects off various stuff that when the side effects stop, I can tell the medication has stopped being useful too). The side effects ranged from various stuff like moon face (thankfully I only ever had that when I was on 20/40mg alternate days for over a year), fluid retention, insomnia, constant hunger, mood swings (cheeky shites may comment that there is no difference...), poor bone density, bruising all the time, I could go on! I've also read that it breaks muscle down, and makes all your fat deposits go to areas like your tummy, it basically does the total opposite of what dodgy gym steroids do. Whenever someone would hear I'm on steroids they'd make a hulk like joke - sadly its useless! I think I've definitley noticed that, as I think its a factor in my slower than I'd like improvement in the gym. I can be stuck on the same level for months noticing no improvement on ease or stamina, and I'm sure that's because I'm trying to gain muscle on top of a medication that wants the opposite.

So I'm stable *knocks on every piece of wood in a 3 mile distance* which means my Dr thinks its perfectly fine for me to come off it, as the original need for it has cleared up and its not really needed for anything else. Plus it'll probably be better for my bones as my last bone scan came out as -1, and for someone who trips and walks into things on a daily basis, thin bones are not on my wish list.

It took a couple of weeks of taking 5mg and 10mg per day (which evened out as 7.5mg) then 5mg every day for two weeks, before I had a test done to check my cortisone levels. That involved a blood test, an injection of synacthen, another blood test 30 mins after that, then another, an hour after the injection. Thankfully my nurse brought me a proper cup of tea, as the test had to be done first thing in the morning, before I'd taken my steroids. I woke up so early I didn't even bother eating breakfast as the earlier I wake up, the more I cough, and just feel sick instead of wanting my usual bowl of coco pops.

The test came back fine (obviously) which meant I was actually fine to stop the 5mg a day completely after getting those results! I'm still on steroid inhalers, but I need to stay on those as they help with daily things.

It's been a very long 7 and a half years or so, but I'm finally freeeee! Out of all my meds, I really hated pred the most, and that seems to be echoed in a lot of other people's views too! However, I'm not adverse to a 5day course of 30mg if it helps whatever the problem is.

Friday, 21 October 2016


A month ago, we got back from an amazing 9 days in Orlando, Florida. The first proper holiday we've been on in 4 years, saving up for so long made it so worth it! And we spent every penny we took, which was the intention, I just didn't realise how much stuff would cost over there! Most of it went on food, and a few little souvenirs, but savings are made to be spent on something memorable so we don't regret a thing! This will be a pretty long post though...

Whilst the holiday itself was amazing, the journey there left something to be desired; After waking up at 3am for a 6am flight, it was delayed by a couple of hours, and once we did finally get on, it didn't leave for another hour and a half. This meant our other 2 flights had to be rearranged as we'd missed them. They sorted this, with a few bumps, and we basically ended up on the same route, just 3 hours behind.

Our last flight (JFK to orlando), or rather just JFK the airport, was a fucking shambles. When you require special assistance, even if that's just the lend of a wheelchair cos you can't walk the ridiculous distances, they basically push it for you, even if your other half is totally capable. Apparently we needed a taxi to take us to the other terminal as the airport was fucking huge. We waited 30 mins, for the taxi to get here (with a member of staff telling the other 2 couples that John and I were the first to get on as our plane left first), for everyone else to bundle in, the back two seats not be able to fold up into seats, and for the taxi to leave without us. The staff member then pointed us to the air bus... right across the street, and that would take us to the terminal (which it did, in 2 fucking minutes!) She took the wheelchair off us too though. We had to then stand for about 20 minutes through security (as i had no fucking wheelchair!) with unsympathetic staff who didn't care that our flight left 15 minutes. We managed to get into a slightly shorter line, only for some actual shockingly super obese lady, her daughter, and her accompanying special assistance staff member, to shove in front of us, and take decades of time to get her stuff through the scanner. John had pretty much given up any idea of making the last flight, and I walked ahead, out of breath, shins and back hurting from the walking, to get to the gate, which was typically, the furthest away, and once I was there, I may or may not have promptly burst into exhausted, frustrated tears when she said they hadn't shut it yet so we could still get on (they closed it right after we did, though!). That flight was a couple of hours long, we got our transfer (which took over an hour as the driver decided to drop off everyone else first, when our hotel was 20 mins from the airport), and got to the hotel, to be greeted with a massive rush of boiling humid air at 11pm.

Once checked in and in our hotel room, I shoved my Dnase into the fridge. It's meant to not be in room temp for more than 24 hours and it had been out for 25 due to the delays. I think it still worked well, my chest was a bit more chunky through the week but that may have been the humidity or something.

After all that wonderful excitement, we started our holiday properly! We had one empty day during the whole time, and in hindsight, it would have been smarter to have set that free day for the first day to sort out the jetlag, and the fact that i felt dizzy from the planes, hungry (and sick from hunger) from having eaten 2 meals since 3am uk time the previous day (getting to the hotel at about 4am uk time the next day), having had about 6 hours sleep in about 48 hours or so, and possibly having taken the wrong creon amount during one of those two meals as i felt bloated and sick, which is how i feel when i don't take enough. Regardless, we started our two days at universal, and they were amazing! We had 2 day, 2 park tickets, with a quick queue ticket which came in part with staying at the on site hotels, and a special Gold pass, from the charity who gave us the park tickets, which allowed us to skip the queues in places where the quick queue didn't work (mainly meant going the long way to the rides which was useful as the wheelchair we had to hire due to the distance I'd have had to walk, as well as the heat, wouldn't always fit round the queue lines very well).

John went on everything, and i went on anything that didn't give me horrible vertigo (due to my whacked out balance and hearing problems, on top of the fact i already felt sick). I went on one 4D ride and nearly threw up, which was saying something as they're the ones where your chair just moves about while you watch a 3d film. I had to skip most roller coasters (i went on a couple, and quickly found out that barrel rolls and loops do nothing for the vertigo) but i did go on a few mini roller coasters and some that were kind of 4D but not as bad, like gringrotts, spiderman, transformers etc (they were pretty good fun but i'm also a wuss meaning if i didn't have vertigo i wouldn't have been able to go on the huge roller coasters like Rip Ride Rocket and the Hulk anyway)

We had a list of rides we'd made from looking on the website, which basically skipped the kiddy rides, and I'm really pleased we did everything we aimed to. The quick queue certainly helped though as some rides had really long queues. On rides where we weren't sure if they spun or rolled, john would go on first, and tell me what it was like so i could decide. We also went on the water rides, and because it was about 30+*C, we dried out quick too!

After those two days, we went to Busch Gardens, Sea World, the Kennedy Space Centre, and Aquatica. I don't have many photos at all, a combo of mostly being on rides (or waiting for john to finish his ride) and having a shit camera. I couldn't take my Nikon D3 due to the weight and its value, so borrowed an old bridge camera, which was blurry, terrible low light, out of focus a fair few times and took 3 seconds to take a photo (meaning i missed a few things i had a second to capture). About 2 thirds of the photos i took were blurry or hard to see due to the bad lighting. A bit annoying when i realised my dad was genuine when he asked if i wanted to take his canon IXUS which takes amazing photos, and its a pocket sized camera too.

There were a lot of roller coasters in busch gardens and sea world, and john went on most unless they were shut. I went on this insane green roller coaster in busch gardens which was the kind which speeds up as it goes upwards, and I tolerated that one fine considering there was one barrel roll. I'm glad i at least went on a couple as i used to love roller coasters but now they scare the living daylights out of me. I'm scared of heights so any vertical drops have me bricking it just looking at them. There was one insane looking coaster at either sea world or busch gardens, and i was going to go on it until i saw it had a vertical drop, and got myself in such a panic i just sat and watched in horror as john got on and came off a few minutes later grinning like mad.

We also decided to go to Halloween horror. It cost a lot but it was so worth it. We managed to get another gold pass (which are impossible to get unless you have someone helping) as ours was only good for the two days we were at the park originally, and i think the only reason they gave us it was because we already had one. John over heard three people come in and ask for one while we were at the desk, and they were all turned away. The quick queue for HHN was about $80 per person, per night, and the hotel one didn't count for it. The queues for the horror houses were up to 2 hrs long and there was no way I'd have managed that. We still had the wheelchair but even sitting in it gets uncomfortable, and there was various people smoking all over, as they apparently seemed to think that if it was dark, you didn't have to go in the smoking areas.

We went to halloween horror three times (its only open certain nights but our ticket was valid for about 21 dates - its expensive but if you're around for that long its pretty damn good value) and there were also several rides open during it, but with much shorter queues. I think John went on the Rip Ride Rockit rollercoaster about 5 or 6 times, and we went on the mummy and the gringrotts ride several times too.

On our last day, we'd been to Aquatica, but weren't there all day due to the fact that neither of us liked the slides where you didn't have a ring - you felt each join in the tube with your spine and fuck me that hurt something rotten! There was also a thunderstorm coming which meant lots of things had to shut. The same thing happened the previous two days, and the rollercoasters, and various other stuff, will stop if the thunder and lightening is less than 5 or 10 miles away. A lot of the time a massive rainstorm followed which meant most people weren't exactly about to go on a coaster anyway.

That evening we went for a meal at hard rock cafe. It was pretty pricey but worth it for our last night. We decided to walk back to the hotel rather than take the boat that went back and forth every 10-15 mins, and I simply thought John suggested it cos he didn't fancy waiting. There was a tiny beach on the walk back next to the pool (although that was shut as it was 10pm) and john suggested we stop and sit on the loungers. Again, i thought he was just making sure i wasn't getting too worn out. I was sitting in front of him, admiring the view, and he pulled out a ring and put it in my hand!

I may have not put two and two together (something in me didn't want to presume as we've always said we'd want to get married but i wasn't expecting anything just yet!) so I turned around and John asked me to marry him :)

It turned out that when we went to my parents the night before we left (at his suggestion but i thought that was a simple popping over to say hello before we go on holiday kind of thing) he asked my dad for permission which i think is very sweet - of course my dad didn't mind at all as my parents love john and get on with him brilliantly. He told my mam after we'd left, and other than them, the only other people to know were johns parents.

We've been together 5 years and lived together for over 2 and a half, so people have been asking and asking when he would propose. I'm glad he waited till he wanted to and didn't feel pressure, and now people can finally stop bugging us (but the 'when will the wedding be' questions have only just started!)

We came home on a bit of a high the next day, with no problems thankfully, although it was weird at first settling back into regular life, and yes, I've already started gathering wedding plans! We don't want to be a 'get engaged and just stay engaged forever' couple as everyone loves a good wedding. Just kind of hoping for a small windfall to pay for it ;)

Health wise, I'm quite well! I went 4 months between my last ivs before needing them in prep for holiday, and I'm about 6 or 7 weeks out of those and coughing a bit, but i think its the sudden temp change as england seems to think its migrating up towards the north pole.

More photos if you made it this far! Sorry it was so long!

Saturday, 3 September 2016

Holiday excitement

So i turned 25! I feel so old considering I still regularly pass for 15. I know, I always get the 'you'll be grateful when you're older' comments too but they do get boring after a while. Sort of like the 'wow you must rattle' comments when people hear how many tablets you take a day.

Speaking of tablets, I'm 4 days away from finishing my holiday prep IVs and I've started packing up for holiday (10 days!!!) and even though I don't take a serious amount of stuff (I think I'm probably mid way, i do take plenty but i don't take as much as some of my other CF friends) my suitcase appears to be 3/4 full of meds. I'm only taking a cabin bag and an extra carry on, I get far too worried about putting things in the hold. But what really got me is that when I asked someone on british airways twitter account about possibly having an extra carry on just for meds - and what i got in reply was "oh don't worry, we have quite the generous carry on allowances"- even AFTER she asked me to list everything I'm taking! Which, if you were wondering, goes as follows:

9 x dnase
9 x saline for neb
eflow (with plug and batteries)
eflow mouthpiece
tobi pod
9x days of orkambi (36 tabs)
3 x pots of creon (I'm so glad i only take around 5-7 for a meal!)
antisickness (taking 9, enough for one a day, as they also help with some reflux)
salt tablets (at least 3 a day, maybe more)
symbicort inhaler
ventolin inhaler
Spirivia inhaler
9 x calogen shots
fluxclox (72 caps. I know, its loads. Blame my doctor)
omeprazole (18 caps)
urso (18 caps)
Vit A+D (18 caps)
Vit E (9 caps)
Vit D3 (1)
pred (18 tabs)
Azithromycin (4 tabs)

overall: thats 510 or so tablets, 18 neb doses, 9 supplement drinks, a nebuliser with the essential bits and 4 inhalers. For 9 days.

I'm pretty sure thats all. Oh and by the way I'm also meant to be able to fit everything else! Like toiletries, clothes, my camera, phone charger, sunglasses, all the documents etc. The bright side is that coming back I'll have loads of space! I'm taking everything in the original boxes as that should be easiest, along with a letter from my cons. I'll be putting everything in the dossett box when I'm there, but don't want to travel with them in the box already as a, if it opens then thats just too upsetting to even consider - its bad enough when you spend ages decanting it all, and knock it over on a table in the process of shutting the lid. Also, some airports may not be too happy about it - considering I'll be going through 5 overall (including arrival) just on the way there, 3 of which are in america.

I promise to put up a long picture-esque post when we're back. I'm hoping to get at least one good one of me and john as that was all the charities asked for in return (you know, the CF charities that give you money specifically for your holiday)

I really hope the pictures turn out okay too - I wont be taking my fancy pants DSLR as it weighs a tonne and is also very expensive. We do have insurance that covers that but its just too risky for us. So Im taking an unused bridge camera from John's mum, which I've tried a few times and its okay, just so odd not being able to control as much as you can on the D90!

Hope everyone's had a lovely summer! I actually got a bit of a shock to realise kids were going back to school next week!

Saturday, 30 July 2016

Hit or miss

I have a hit and miss record of whether or not I get on with medical professionals. When I was 11, I was admitted into hospital, and I vaguely remember having a ward round with my consultants, several other clinic members and what seemed to be every fellow and junior doctor in the hospital (this may not be accurate, I just remember being absolutely surrounded in my little hospital bed). A female fellow was told to give me an examination and I said 'NO! Not her! I don't like her'. This was met with several surprised faces and glances (it still bothers me to this day, as coincidentally, I think she was muslim and I always worry I came off really racist!) The actual fact was, I'd seen this doctor several times in clinic, I'm pretty positive she was particularly bad at blood takes, and she always generally ignored me and spoke to my parents. This wasn't new. But I remember my dad telling me he was irked by her because they were always rang up with sputum or blood results a few days after they'd been taken, and whenever she was the doctor in clinic, no one ever rang us up. It may be a petty reason for an 11yr old to dislike someone, but, i was 11.

Yesterday I was putting a clinic letter away and decided to read some old letters instead. I found one from this fellow which said things like my hearing loss wasn't due to aminoglycides (er, yes it was) and that I could be particularly difficult in clinic (how would you know? You ignored me the entire time!) I guess my hatred for her wasn't for nothing then if she was bad mouthing me in letters to my GP.

Another time when I was a teenager (must have been 14 or so as I read this in a diary) I was sitting in a side room to get my port flushed, and the CF nurse suddenly started on me saying that I seemed miserable and grumpy. I just remember feeling really pissed off at that comment as I'd been there all of 5 minutes, barely said anything, hadn't been rude or short with her and she'd made me take my top off to get to my port - I wasn't wearing anything underneath and felt self conscious and awkward, so if she was basing my 'grumpiness' on this, that wasn't fair. You try taking your top off in front of 4 other people, I know they're nurses and parents so they'll not be bothered, but it doesn't change your personal self consciousness feeling.

One letter I found, considering there wasn't many from paediatrics, this one has pissed me off a HUGE treat. I was about 16 at this point, getting sarky and pissy with doctors who spoke about you to your parents, shoved you in the corner with a games console and discussed your life without you being allowed any input. (This would often end up with things like IVs being scheduled on the one Friday which was a pain in my arse as I wanted to go to a friends house or a party that Friday or Saturday, and once I realised the date clash, they refused to budge even one weekend) Anyhoo, so this letter was to my first consultant in adults, and was about an impending transition clinic. He outlined some basic health (I find it interesting they said I was one of the patients with severe lung disease when I'm actually still pretty decent now nearly 9 years later) and then, decided to say that he didn't think that my hearing issues were because I'm deaf. He said he thought I had a processing issue.

Now you could argue he may have meant the nerve damage - I don't seem to process noise into actual speech and sounds, it's literally just noise and I need to lipread to understand. However, he followed this up with 'because she's always been strange with everyone in clinic and would probably benefit seeing the psychologist due to this behaviour'

I read this yesterday and swore loudly. Its been sitting in my file for years and I've never read all these letters cover to cover. But I am fuming at that. This doctor gave me tobramycin which made me deaf - confirmed with rapidly decreasing hearing tests and the diagnosis of aminoglycide hearing loss and damage then confirmed by a very good ENT surgeon. But according to this moron of a doctor, he seemed to think that my hearing wasn't an issue and I had some sort of brain problem, maybe? My 'attitude' (which i was constantly told off about when I was a teenager, cos guess what? I was a fucking teenager) was pretty normal for a stroppy teen, and mostly in clinic, I'd ignore the doctors because they ignored me. I'd get pissed off with plans made about my life without me even being told about them, and they never, ever asked for any input from me, about my life. I'd then get told I'm stroppy or grumpy, but what do you expect? They were never nice, they never really smiled, or made you laugh or praised you when you kept your weight up. Clinics would be long and gruelling and I've always been the type that gets very 'hangry' - starving and very very angry. I found a lot of irony once in my mum asking the dietitian if they could hurry the clinic up because I was getting hungry, and the dietitian, who had just been telling them that I needed to gain weight, said 'oh well we're all a bit hungry aren't we'.

I don't like the paediatric team and the more I read about my past treatment, I hate them more. I apparently trialled DNASE when I was younger, but didn't feel it made any difference so they stopped it (the one fucking time they asked my opinion and it probably wasn't a very good one!) According to a fellow who summed my notes up for another doctor in a letter, my dad asked them repeatedly to let me try it again and they never did. I started it this year a couple of months ago now, and have felt massively different, my lung function went up a chunk after starting it and my chest feels clearer. I can tell this difference because I pay attention to the numbers now (i didn't when I was a kid) and my chest has gotten worse over time so i can personally tell a difference when a medication works or when I have an infection. As a kid, I don't think I really noticed a difference other than if my cough got bad. I'm now wondering if I had the idea of DNASE explained wrong which is why I didn't feel it helped. Fuck knows why they didn't put me back on it though as it seems almost mandatory that people with CF have it now.

But basically, I cannot get over that bastard cunt of a doctor saying that basically i have mental or behavioural issues and that's why I could be a little sod. Doctors and nurses who can't understand normal teenage behaviour probably shouldn't be working in paediatrics.

As far as I know, that doctor has since retired, but I wish I could see him now and show him that this girl with 'processing issues' managed to get through all of school, 2 college courses and a uni degree. I do have hearing problems, and I do need allowances for that, but that is not cause for him to write what he did. I know I shouldn't dwell on it as it doesn't matter now, but I think the basic indignity of someone knowing so little about someone they treated for a decade or longer, shouldn't have written bollocks like that.

I also wish I could say that things changed in adults, but they didn't. I no longer get along with my original doctor from adults, I don't agree with him on many things (like when he gave me muscle painkillers for constant headaches due to low sats, or 3 years ago when he spent half an hour telling me 'at this rate of decline' i would need a tx in 6 years, when all I wanted was some IVs. My lung function is now higher than it was then. Twat). There was another doctor who I saw only once, but I remember telling him that I couldn't understand him as he was mumbling. He took this as to get out from the desk chair, kneel in front of me, lean forward and speak to me like I was a severely mentally ill person. Me and my dad just stared at him in absolute disgust. I can't remember what else was said but I do remember thinking how easily it would have been to kick him in the face.

There is one nurse who speaks to me like that in clinic, but thankfully I haven't seen her for a while. She always seems to be doing paperwork in a room rather than seeing patients. There is another who also can't seem to understand I'm deaf despite being told at every appointment for years now. She seems to think I'm a bit special though as she's always asking why my dad/sister/boyfriend aren't with me if I've come alone. Aside from the fact that my dad let me start going on my own from when I was about 19, unless I asked him to go with me, and my sister stopped going with me when I moved out my parents house over 2 years ago.

There is another CF cons who I don't see, but he doesn't have many CF patients as I'm pretty sure he sees other general resp patients and is often running up to HDU for patients up there, if he's not putting a port in. I was speaking/arguing with a doctor I only saw a handful of times, and I was getting my routine IVs which I always had twice a day (unless its a specific drug which the dosage can't be increased). Anyway she was trying to give me them 3 times a day, and i'd finally gotten used to the 2x a day that clinic usually gave me. This caused her to leave the room, return with this other Cons, and have him read me the riot act on why I need IVs and why they're so important. After about 10 minutes of this, I wasn't paying attention as he was speaking too fast and has a huge moustache and beard that covers too much of his mouth to lipread well. Someone finally pointed out that I wasn't actually refusing IVs (I'd asked for them...) but I wanted them 2x a day instead of the 3x a day that the younger doctor wanted to give me. This was followed with an '...oh' and then a sudden subject change of how school was going. He then wrote 2 pages in my notes saying I was refusing IVs, being rude and argumentative, and eventually agreed to have them.


I generally get on with most people in adults now though. Up until a new dietitian swanned in late last year after my lovely dietitian retired. Thankfully there's 2, and I get on with the other, but the new one is a pain in my arse, and she should bloody well know it by now. The first time I saw her, I swear, she said the word 'poo' 5 times in the 5 minutes she saw me. That annoyed me as I felt like she was either obsessed with the word or she was talking to a 5 yr old. When I was ill, in and out of hospital with odd gaviscon side effects in Feb, she said that if I 'calmed down' my 120 resting heart rate would be fine and i was imagining the palpitations. She said there was no problem in my losing 5kg in two weeks. She walked in on me throwing up the chocolate roll I'd managed to eat, and saw no problem. She decided to 'help' by bringing me toast that I'd agreed to try. She brought it in stone cold and burnt black, and walked out smiling. I did ask if NG or NJ tube feeding was a temporary suggestion for the fact that i wasn't eating more than 2 or 3 small bites of food per meal. She said 'NO! we won't do that' and promptly walked out the room. When I asked for calogen shots, as no one had given me any supplements the entire time I'd been in, she waved my request off saying 'they're on the ward somewhere' (I'm not allowed to go rutting through cupboards!) and walked away. When the HCA found them the next day, they weren't calogen, which I'd asked for due to a specific high fat content, but something with much lower fat. And they were warm cos they'd been in the cupboard and not the fridge. I'm also really annoyed that no one (especially her, as she is the fucking dietitian!) did anything or even monitored the amount of food I (wasn't) eating. It's surely quite dangerous to leave someone only managing to eat 2, maybe 3 small bites of food per meal and not really give a shit. Especially when its combined with rapidly dropping weight.

The last time I saw this twatty excuse of a dietitian, I told her that my problems had been due to gaviscon, and she smirked at me and shrugged this off. I then got very angry at her and told her she needed to move her hand from her mouth because, as I'd told her multiple times before, I'm deaf and I lipread. I haven't seen her since - my nice dietitian wasn't in clinic on Wednesday so I told my CF nurse and my cons that I refuse to see this woman who's name I don't know and don't plan on learning. She would have happily watched me starve to death so I won't speak to her. The other dietitian is also happy with this and doesn't mind being the only one to see me, or me not seeing any dietitian if she's not available as my weights now good and the best it's been.

Maybe I just get shit health professionals as honestly, some of my so called attitude isn't exactly uncalled for!