Sunday, 23 December 2012

Early christmas present

I had clinic on Friday, and it turned out to be one of the best clinics I've had in a while, so sort of like a really nice early Christmas present. My Lung function was the best it's been in several appointments (not sure what the percentages were yet as I always just read them off my copy of the letter which is sent to my GP) but I vaguely remember the amounts, and I think the first was about 1.90ish and the second was just over 2litres, for me I think that's nearly 70%, and considering the fact I haven't felt great (despite finishing IVs 3 weeks ago, I'm blaming the weather) seeing my lung function be so impressive has seriously boosted my confidence in knowing I can get it up and keep it there, as it's been hovering in the 50s-60s for a while now. Not that those numbers aren't still pretty damn good, but I do prefer the higher numbers :D

I wasn't expecting this as I'd been feeling crappy, exhausted, random breathing attack things that would leave me gasping for breath for no reason (which confused my physio and dr nicely) and coughing all night, therefore getting minimal sleep. I'll admit my exercise attempts do falter in the winter, as I like to go on walks around where I live, and that just isn't happening in these temperatures. Wind, rain, fog, snow, none of it could end well for little me!

The rest of the appointment was great too, my weight was stable (ish, I did loose 0.2kg but I put that down to already being starving again just after lunch, despite managing breakfast, lunch, two cups of tea, a packet of cashew nuts and a fortijuice all within the 4 hours I was awake before heading to clinic) my sats were a nice and lovely 98% too, and then there's the extra things that happened:

I'm getting to trial the Tobi Pod inhaler at my next appointment - you have to do lung function before and after to make sure it doesn't affect you too much; if you drop more than 10% (i think?) after trying it, you're not allowed to use it, but if its less than that, you can keep it, and therefore drop the horrendous tobi nebs. WIN! I HATE the taste of those nebs, and even though Ive heard the inhaler doesn't taste much better, it's done in seconds so that beats sitting with the eflow for a good 10-20 mins inhaling the awful taste. Also a bonus of halving the amount of neb cleaning I need to do and also the obvious cutting down time, which is handy if you're in a hurry to leave somewhere and forgotten to do all of your nebs. So basically, I'm sooooo hoping I can use this. The idea that I'd have to continue using the foul stuff whilst everyone else gets a short cut would really nark me off!! Now they just have to get the colomycin one finished so I can completely remove antibiotics from my neb regime!

I'm possibly changing my steroid inhaler (I can't remember the name, ever, just that its orange and round) to something stronger, and hopefully this might stop these weird out of breath whilst doing nothing moments. They're slightly scary as I don't know whats caused them and I don't know how to slow my breathing down (as I can't seem to take a deep breath in when it happens) or calm myself down to just get back to normal til it just happens itself. Maybe I'm just odd.

And thirdly, I'm trialing DNASE the appointment after I've tried the tobi inhaler, as hypertonic saline might not just be getting the job entirely done anymore. I can't remember if the physio said I'd do both or just one of them (deep joy at the idea of adding MORE to my neb routine, I don't need to do much at the moment (two nebs twice a day) but it doesn't mean I fancy more of it) but hopefully it shifts the rubbish in my chest! I need something new to work as needing IVs every couple of months (or even sooner sometimes) is just getting so stupid.

My dietitian would, as always, be happier if my weight increased, but is still determined to get to the bottom of my random high blood sugars. And definitely wants me on some sort of insulin. So a blood test was sent off to check the HABc1 or whatever it is, as that's what originally sent alarm bells ringing, when the number was at 50 at my annual review, and she doesn't want it higher than 42. The idea still annoys me, but it does have its advantages - controlled sugars would hopefully benefit my chest and also help my weight.

Finally, if you think of anyone over the holidays, please think of Kerry. She's only 21, now at 8% lung function and struggling every minute. All she wants for christmas is to be here, spend time with her family, fiance and gorgeous doggies, and get that call for lungs which she so desperatly needs. If you haven't signed on the donor register, PLEASE do it now. It takes two minutes, and you could save the lives of up to eight people. No one likes to think of death, but surely knowing that you could save the lives of so many people, and prevent more families experiencing the horrendous grief of loosing a loved one, that should make it a damn good reason to sign up.

Saturday, 15 December 2012

Reflux ridiculousness

I've been having some proper problems with reflux in the last few months. Basically, it started in August or so and my tongue was really, really painful. It hurt to eat as it felt like my tongue was burning. Sort of like when you eat loads of fizzy sweets and then your tongue hurts for the rest of the day. Try having that every day for a few months. Anything with a slight texture or flavour would absolutely destroy my tongue so I probably wasn't even eating enough when it was at its worst.

The incredibly annoying irony of this, is that previously I've never had reflux issues in the slightest. I've been happily taking Omeprazole for years at a basic 10mg a day. When my tongue was still hurting, and a clinic appointment came around, I brought it up to my dr and he suspected reflux. More specifically, that reflux had been burning my tongue, so my tongue was essentially a sensitive burn which would explain the pain when trying to eat say.... anything. He changed the dosage to 20mg a day (I say he did, but I actually had to go to the GP and have it changed, which caused a lot of idiotic issues as I'd managed to book an appointment with a locum who didn't know how to use the computer system. Smart.) and changing the dosage helped a lot. The pain halved quite quickly and with any luck, it would go away completely.

But noooooo, unfortunately the same thing started to happen, so my dr (ahem, GP) changed the dosage to 40mg a day, so its 20mg in the morning and 20mg at night. This seems to do the trick, and if it starts to happen again, I will loose my temper incredibly and cause the most unbelievable shit storm, you would not believe.

Now back to the irony of all this.

A few months before all this started to happen, I'd agreed to do a reflux study with some peppy little dr who'd persuaded my dr to ask all his clinic patients if they'd like to take part. Completely optional of course, but I thought it sounded like a good deal as he'd get his research and the info could also be used to make sure I'm on the correct amount of reflux medication. The reflux bloke had pointed out how reflux can cause infections and so on, and considering how I only go a few weeks or a couple of months off IVs before needing them again, and also have a fairly colourful amount of scarring on my xray, I was interested.

By the by, I'm fairly sure I cocked this up in the first place, as I was asked to stop taking my reflux meds for a month, and for some reason, accidentally stopped taking my Ursodeoxycolic acid for a month instead. Although I'm positive that's what I was told to stop taking and was incredibly confused anyway. Oh well!

Once the day came to go to the reflux dept and have a charming little tube stuck up my nose and down my throat to monitor my reflux for 24 hours, I started to get a little jumpy. I've had 3 NGs previously, all placed within the space of a week when I was 11 (right before getting my PEG). The first one was pretty bad as they'd managed to convince themselves that an adult size NG was a suitable size for my little 11yr old frame, and spent the following days (before I threw it up, ha!) unable to sit up or eat solid food as it was so uncomfortable. Thankfully the other two were paed sized and never bothered me up until my PEG placement.

The little dr assured me that the reflux tube would not even be half as bad as an NG, and waved this tiny, nearly threadlike thin piece of tubing in front of me to show me how small it was. So, begs the question, how did that tiny piece of tubing become more traumatic for a 20yr old than 3 NG placements when I was 11?


Yep, the bastard actually lied through his teeth. Once I'd finally given him the go ahead, he swiftly dropped the tiny tubing and picked up this huge tube that was closer to resembling a small suction tube, and rammed that up my nose. Not to mention that I'd had a nose bleed the previous night due to being on Ceft IVs and coughing like a maniac. Him ramming this tube up my nose with such force hurt so much I pushed him away and told him to back off and that he wasn't coming near me again. I felt like I'd been punched in the nose. He then profusely apologised, and said how he needed to put that tube down first (for something that I've forgotten, but it wasn't very justified to not bloody mention it in the first place) before he placed the smaller one. Suffice to say, he didn't come near me again and I left the department in a very bad mood, with my hand still over my nose in pain.

So yes I find it quite ironic that I'd never had reflux issues in the past before getting this problem quite badly, and also that I was offered a 24 hour reflux monitor and they fucked up to the point of not even managing to go through with it. But as I said, I'm hoping the 40mg a day will work nicely, as its actually taking the piss when you can't finish a small cheese burger from mcdonalds because the tomato sauce is making it too painful to take another bite.

Sunday, 9 December 2012

Catching my breath

Or at least attempting to.

I don't know if it's cause of the weather or cos my shit excuse for lungs start having a tantrum two weeks after finishing IVs because they're blatant IV drug addicts.

Basically, the crack is that I keep getting out of breath. Doing nothing. It'd be understandable if it was after walking for ages or after a huge coughing fit etc (Which happens anyway) but my god, this is really pissing me off. I can just be sitting watching tv and all of a sudden I'm out of breath and can't slow down my breathing or take a deep breath at all. It's so bloody annoying as I was hoping these IVs would have lasted me till at least christmas. I'm already coughing all night and waking everyone up again, and there's nothing I can do about it. I've got a clinic appointment on the 21st so I don't know what they'll say then. I don't want IVs over xmas, and I can't take Cipro as it doesn't seem to do much, and also destroys my appetite so I literally don't eat the equivalent of one meal a day cos it's that bad. I'm on tobi nebs this month so I'm hoping that might help some. Not that I actually notice any difference when doing my nebs, but I'd rather not notice a difference rather than not do them and potentially feel worse.

It's still fucking stupid.

I'm obviously in a right grump about this but I think it's justifiable to be pissed off about feeling shite when you've literally just finished IVs.

Blah nothing else to say except to bitch about my lungs. I'm sure if I could get out and do more walking it would help, but its minus degrees outside, icy, and even wearing a massive hoody, coat, gloves and the like still don't fend off the freezing temps. So I'd rather not add either a chest infection or a cold to the joy that's happening so far.

Hopefully this will go away on its own (and cos of nebs, physio and whining about it daily) and if I don't get off my arse to post again before xmas, hope everyone has a good holiday spending time with their friends/family/various cats


Monday, 26 November 2012


As the title says it all! There's no need for a blog as I have nothing to say basically, the one word above sums it up nicely. So here's some photos I've been meaning to upload. It's a total spam of Chicago, fireworks, water drop photos from a very boring afternoon, and a cheeky photo of me in my graduation get up holding my pretend diploma (And I've finally just gotten the actual certificate in the post, 6 months late...)

 Considering I felt awful here and was on cipro with no appetite, I found it funny people say I look quite healthy here! Good lighting gave me a bit of colour I suppose! And a few lingering freckles from the sun in spain!

Adding my own touch to the place... ahem


Friday, 23 November 2012

Casa de NHS

Once again I've landed myself in hospital with the charming leash to the wall otherwise known as O2. Joy. This is the second time this has happened in two years, I swear, this better not be an annual thing, as it happened last winter too, and I find O2 so bloody irritating even if it's only for a few days. I have no idea how other people put up with it cos my nose is so itchy!!

Please ignore my fringe, cos someone decided it needed a trim, and now someone has to look like a twat whilst it grows back to an acceptable length.

I only came in yesterday (Thursday) and as my IVs finish on Monday, and it seems the O2 is helping (also cos my sats dropped to about 89 last night when the O2 fell off) I'm stuck here till Monday at the least. Or rather, I'm stuck here till Monday then I'm fucking off cos I'm sure I'll be fine by then. And also bored. My family visited me earlier which was nice, but once again there's always the guilty feeling for them having to drive half an hour and pay for parking just to come see me. My boyfriend and best friend have both said they're visiting me tomorrow so I won't be stuck with crappy weekend tv just for entertainment. Luckily being in a cf room, we don't have strict visiting hours as our unit is right next to the doors, so I've been told up to two people any time I like, as long as we behave (and of course I'm fucking angelic) and during actual visiting hours of 2-4 and 6-8, basically as many people as I like. Good enough for me!

However, it's not the be all end all as I have decent food (CF menu, whey!) with pretty trays which brightens the place up, and I'm also in a CF room so that means freeview on a flat screen tv and an ensuite bathroom. No need to leave the room for anything really! Even the HCA who does the tea trolley doesn't even ask if I want tea, cos I always do, so she just comes in with it now, heh. 

Perks aside, yes its boring, and yes I'd rather be at home. Can't win really! There's whispers of an ABG to be done at some point, I think its a maybe thing, which won't be fun. I've had one done before and it wasn't the end of the world, but I do find them uncomfortable as they use the artery in your wrist method, and last time it felt like the air had gone out of my stomach. Although if it helped them find out why I have stupid headaches I'm hardly going to kick up a fuss so we can just get it over and done with.


Thursday, 15 November 2012

The good, the bad, and the incompetent

Small amounts of win include my sats settling down, my headaches going away, and successfully making sure that I never have to see a certain doctor I disagree with at my clinic ever again...

The headaches reached a point where I asked someone to call up clinic for me and arrange a quick appointment to talk to a dr and see if we could figure out what the headaches were - and if it was an O2 issue. My clinic itself is fantastic and I got an appointment for the next day. I understand that some people may have to wait ages for an appointment with their hospital, or might even just wait till their next schedulled one. I could have done that, considering my next appt was literally a week away, but I wasn't keen on keeping the samba drum going in my head for that long.

Suffice to say, the appointment itself wasn't as successful as I hoped. There's three doctors at my clinic, and they divide the patients between them, making sure we each keep the same doctor so they have a better idea of us personally, our treatment regime and little things like that. Since moving to adults, I've been under the care of two different doctors. I switched maybe a year or two ago after one too many disagreements and more or less just getting on much better with the second dr (who is actually younger therefore doesn't look like he's already past the retirement age...). Sadly mr awesome doc was on his jolly hollys when my headaches struck, so I had to see Geriatric Dr (also 'Dr Penis' as named by Gem) who I hadn't been stuck in a room with for quite some time, so I'd forgotten my distaste for certain medical staff. I'm sorry, but just because you were in medical school 300 years ago, it doesn't mean you know more than me. This is a doctor who once refused to admit that nosebleeds caused by IVs (more specifically, ceftazadime) were actually because of the IVs, just because they weren't a primary side effect of the drug. Erm, if Im having the side effect, I think its a fucking side effect.

Stuck in the room, trying to talk to Dr Geriatric, I tried to explain my headaches, and how I've been in this poistion last year when I needed O2. I felt exactly the same, and I didn't know what to do about it - if it was an O2 issue, I couldn't sort it at home as I don't have any. That said, I wasn't exactly begging for an attractve piece of plastic across my face or an admission into hospital.

He spent most of the time convinced it was a sinus problem. My headaches went past the area he said my headaches would be if it was my sinuses, and also, slight lack of sinus problems EVER made me skeptical to believe this diagnosis. Secondly, he suggested it was just pressure from coughing. I already get those sort of headaches and they don't last two weeks constantly, so I disagreed with this too. He checked my sats for two seconds. I'd been sitting resting for a good 20 mins by now, breathing normally and talking (headaches would hit when I was breathless, for whatever reason, sometimes randomly after doing nothing) and therefore the buggers were 98 and certain people refused to believe my home sats monitor (which I've actually compared to a hosp monitor) had been saying between 86 and 93, as they seemed fine now. My sats have always misbehaved when I feel shite, and have an annoying habit of actually being perfect once I get round to trying to sort it. Typico.

He did suggest it could be a Co2 issue, but couldn't be arsed to do the ABG which would have told us whether that was a correct theory or not. He asked if I'd tried para or ibuprofen (both which I had tried, and they hadn't worked) and then that resulted in the next comment:

Dr Geriatric : Well I see you've got Codine on your prescription, have you taken any of that?
Me: Nope, cos it was prescribed for pleurisy ages ago and I ran out a long time ago
Dr Geriatric : So have you taken any recently?
Me:... no. I RAN OUT a long time ago, and it doesn't even work on headaches.
Dr G: (presumed internal monologue) "Lalalala I'm a doctor, look at my pretty stethoscope, lalalala"

I do love the NHS, they've kept me alive and well to this day, but some people should not be allowed near the bloody place.

His only suggestion after this was more painkillers. So he trotted off to get a prescription of diclofenac (a fucking painkiller for JOINT PAIN!!! And might I add, it didn't help for a nanosecond when I took it) and when he left the room, I was so annoyed, I walked out. The receptionist stopped me when I said I didn't know where the doctor had gone, but I wasn't coming back, so she took me round to my nurse, who took me to a side room for a proper talk, and for me to vent about everything that happened, including the fact that I was disgusted at the so called doctor for spending the entire time blatantly staring at my chest, instead of say, oh... my face? The doctor did find us and gave me the stupid prescription but i was so angry I told him to piss off. Which I think is fairly justified.

In the next nine days till my actual clinic appointment, after trying the diclofenac once and it not working, the headaches thankfully dissipated themselves. I started IVs as planned (after refusing to start them a week early as Dr Geriatric thought the whole problem was a sinus infection) and so far I'm enjoying the numb hands (and everything else that goes with the joy of IVs) and I'll tell you this for free; no matter how many times I go on IVs, I always forget how spaced I do get on them, and I forget how sodding difficult it is to finish one legible text message as my hands don't do what I tell them. Thankfully typing is a tad easier. Thank fuck for spell check. 

My lung function seemed average (I didn't look properly to be fair) and my weight is STILL stuck around 42kg, which is at least better than I was expecting after managing to get a tummy bug which seems to be going around lately. My advice is to avoid anyone feeling iffy like the plague, as I can't remember the last time I felt that awful whilst I had it, but thankfully recovered within 2 days enough to eat a meal with my boyfriend's family. It was so weird being ill with something not even slightly related to CF. And honestly, you don't realise how much you miss food till you're unable to eat it! It's done my appetite a favour in a way - all through this post I've only been able to think what I want for dinner, and I'm starving!

So I'm off to fullfill my womanly duties (ha!) and going to cook something. Till next time! (if you're still awake after that) x

Thursday, 1 November 2012

De ja vu, I've been here before

I've been treated to the joy of massive headaches again, a la last year when I got admitted twice (in total, for a week) with splitting headaches from low sats resulting in needing oxygen. Which also results in near decaptitation every time you forget you're attached to the wall and try and stray more than a foot from your bed.

It shouldn't happen this year though, I'm hoping. I've got a sats monitor and I know my 'normal' sats are around the 97 point, and at the moment they're around 93. I did have a particularly banging headache yesterday and checked them, and they were at 90, but it probably wouldn't have lasted for long as that was after a charmingly nasty coughing fit. Last year when I was admitted, one of the consultants basically left me with his closing words of 'Stop checking your bloody oxygen saturations' as he was convinced I was basically sitting in a corner repeatedly checking them and panicking at every number. The truth is I barely check my sats unless someone (usually my mum) asks what they are when I feel crap, or sometimes when I'm being particularly spacey (from oxygen deprivation, I'm not that dense normally, thank you) and have the attractive purple/blue nails and just look a general state, I'll check them just so I can use the excuse that looking this bad is from feeling that rubbish. The dark circles under my eyes from coughing all night are also very lovely...

Urggh, wish this headache would piss off kindly now though. It gets a little better after physio and nebs, but it's still there (and coughing like mad from hypertonic saline does make the headache worse, but it's worth the halfed headache for a bit afterwards)

Bit worried about how many spelling mistakes I've had so far, thank fuck for spell check!

Hopefully it won't last long though, after sticking my head out the front door repeatedly trying to get some extra fresh air. I especially have to be well for saturday as that's the bonfire night in hexham, and they always do an amazing firework display. I left my camera in the house last year so I'm determined to take it with me this time and get some decent photos. Fireworks are my archilies heel and I find them really difficult to get the settings right. It especially pisses me off when someone with their settings on auto, camera on a tripod and the best view on the field get some good shots, whilst I'm in the middle of the crowd with people elbowing me and messing up the one good photo I got.

Ah well. I'll leave you with a photo from my jaunt out yesterday, resulting in a new hole in my ear.

New piercing :D

Thursday, 18 October 2012

Chicago, and a catch up

I've been determined to write this post for a while, which is the same story with any post I write, but the problem being is that I leave it so long between posts that I end up writing a mammoth novel that holds no ones attention by the end. My last post being nearly 2 months ago, a few things have happened. The first being, that I'm not actually diabetic! Feel free to jump about and throw children in the air in celebration of me not having to constantly stab myself with insulin, cos that's how I felt. It's not all perfect - I'm sure I'm borderline, and since being told I was potentially diabetic (and scaring the shit out of me in the process, as I'm sure you'd be able to pick up from the last blog) I've been given the order to occasionally check my sugars 2 hours after my biggest meal of the day, but only once a week on random days until I go back to clinic with my taking-the-piss-so-far perfect numbers.

Fuck, that better not be a jinx.

Anyway, the first time I checked my sugars (twice a day for a week or so) every number was perfect, except from one, when I'd downed a (high in sugar) J20 and then 5 minutes later immediately checked my sugars. That's the number that freaked my dietitian out, and I hadn't explained the whole drinking juice and testing my sugars at the same time situation. So now I have to have my meal, and then for the next two hours, eat as much crap as I'd like, and then some. Which suits me as I can eat a surprising amount when I want, and obviously me being as compliant as I am, I'm currently working my way through half a large chocolate gateau from iceland (it says its 16 portions, but believe me, it'll only feed one) and I also have 5 jam donuts. Well actually 4, cos one got slightly inhaled before. Got to admit, with everything CF throws at you, eating whatever the hell you like, and having it twice, is definitely a bonus. Even if it does mean that I still can't shift myself past 42.5kg, which is starting to really defy logic sometimes.

I think I vaguely previously mentioned going to Chicago, and I got home about a week and a half ago. It was fun, we saw pretty much everything (including the blue man group, which are insane) and i probably ate enough to make a normal person put on 3 stone. Unfortunate me being me, and with the amount that I'd walked around every day, my weight from starting my precautionary pre-Chicago IVs was actually higher than when I went back on Monday. I'd lost 0.2kg, which isn't awful, but still ridiculous! Whilst over there, I took nearly 800 photos, which is actually less than I usually take, but there were times when I was too knackered to take anymore, or I'd left my camera in the apartment as the pure weight of the thing is quite heavy and carrying heaving things, especially on my shoulders, is a nightmare for my chest and makes breathing more difficult. The whole trip was so good, but after being there for 12 days, I was definitely ready for home as I missed everything. And frankly, American drivers scare the shite out of me as they all speed like maniacs, whilst texting or talking on the phone.

The flight home wasn't the smoothest - we were delayed 2 1/2 hours whilst on the plane before we left, as there was something apparently wrong with the nose of the plane. After the captain announced that they were going to refuel (a total of about 3 times...!) we finally left, and as it was an overnight flight, I wanted to sleep - we originally got on the plane at 6pm chicago time, and would arrive in Heathrow airport (london) at about 8am London time. It was so uncomfortable though, and there was an inconsiderate man in front of my mum who had his seat pushed the entire way back, and kept moving about so his seat would jerk about every 3 seconds. We stayed awake for the meal (we were starving, having not eaten since lunch) and the food wasn't too bad, but I wanted a well deserved vodka coke as I'd kept my mouth (mostly) shut during the delay, and I was really annoyed about the lack of subtitles on the movies, as there'd been a couple subbed on the flight to chicago (which was british airlines and also went off without a hitch with no delays and way better food, this flight was american airlines, go figure) so when the air hostess passed us and asked what we'd like to drink, my mum ordered my drink for me as she was closest and I couldn't hear/understand the woman properly. When my mum turned to me and passed on the question 'Do you want ice?' the air hostess was shocked, and said that they don't serve alcohol to little kids. We told her I was actually 21, and she said 'wow, I thought she was like... 12!' which took the ultimate piss! I thought getting 14 in america was bad enough, I didn't think it would actually get any lower than that. But I digress. I got my vodka coke as she finally believed I really was 21, and a total of 10 1/2 hours later, we finally got off the plane.

To find that we'd missed our connection thanks to the delay, and had to get a later one back to Newcastle. Thanks AA(!)

Oh and anyone who knows me well, might be wondering if I'd really manage to travel 4000 miles from home and get away with no injuries? The answer is no:

I badly sprained my thumb and have to wear a thumb brace for the next few weeks, as it still hurts ridiculously. I actually did this whilst getting off the first flight - from Newcastle to London, as I pulled my suitcase out of the over head, and according to the woman at minor injuries (I waited till I got home, I wasn't paying a stupid excess from my travel insurance to go to a hospital in America for a sprained thumb) I've probably pulled some ligaments or something. Ow.

I will post a picture spam of a handful of the photos I took, but I can't be arsed right now and I think this post is long enough.


Sunday, 26 August 2012

And the pancreas gives up the ghost

Well... mostly, from what I'm aware of.

I'm now a potential new member of club CFRD and I'm quite annoyed. I don't care if this is something that happens to nearly all CF patients at some point, and I don't care if I'll get used to it. Right now, it's one more 'thing' and a bit of a shock to the system when I heard the words "I think we're going to start you on some insulin".

You see, I can't remember if I mentioned it before, but last month or so, I did a three day blood sugar monitoring after a lot of suspicions with my dietitian that I could maybe be borderline diabetic, considering one of the symptoms is an inability to gain weight even when eating plenty, and my weight is so goddamn erratic, and because my HbA1C level was 50 at my annual review, as they do a random check of that too as well as everything else under the sun with the 12 pints of blood they seem to take. Anyhoo, I was given my own little blood sugar monitor and sent on my merry way. My sugars seemed fine for the three days I checked them - first thing in the morning before food, and two hours after my biggest meal (usually tea. And don't get me started on the whole lunch/tea/dinner/whatever you call it thing, THAT is a never ending battle with certain nitpickers...) except from the one time where I had my tea, went straight out to the pub and drank a J20, and then not long later needed to check my sugars... which were 11. I'd been told 4-7 in the morning, and 4.5-7.5 after my meal were fine, so this one surprised me. Ironically, at the time I was sitting with a friend who has type 1 diabetes, and he pointed out that 11 would still be pretty good for him, haha.

A couple of days later, we had to phone up the dietitian to tell her the results. She actually said that 11 was quite good considering the J20, and apparently she wanted me to slip up to see what my sugars did, which is fair enough, cos if I'd just not had anything with plenty of sugar in (which I usually do...) for the whole 3 days before checking them and went back with perfectly good sugars, it wouldn't be a true reflection of what they do if I usually eat my fair share, and everyone else's share, and actually had sugars going completely mental.

With me so far? Hope so....

So yeah. Potential CFRD-er. Or at least borderline, as I remember her saying she doesn't think I'll need to shoot up my insulin with everything (and my fucking god, I'm tired of explaining to people why they want to start straight onto that, and not try the whole tablet or diet control versions - other than the fact that I know diet control isn't possible cos I need to keep the calories - I DON'T REALLY BLOODY KNOW MYSELF! I'm new to this, don't ask ME the questions!!!) She thinks I'll probably just need it with bigger meals, and maybe when I've eaten way too much sugar. I know some people who only need to have insulin like that, or for example, when they do overnight feeds, but I don't do them. But I'm probably one of those kind of maybe-CFRD-ers.

But anyway, whether I've got it or not, I'm still pissed. Mostly cos it's just another 'thing' to deal with, it'll be a pain in the arse, at least to start with, and even though I'm going to continue to have 2 sugars in my tea, and I hate the taste of diet coke as opposed to normal (and I don't want to have to start asking for a 'vodka diet coke please'...) I'm going to ignore every one who whines at me about sugars, cos I'm taking the whole 'maybe only needing insulin with bigger meals' thing as being allowed to have some sugar, so NER!!!!

Besides, if it was major, ohmygod you're in immediate danger sort of high sugars, I'm assuming they would have started me on insulin now, rather than leaving it until my next appointment (and I've been told to do more random bloody sugar tests in the meantime). Which incidentally is in two weeks, to start IVs as I'm going to Chicago for 10 days at the end of Sept. If I have to add insulin to my list of crap to take, that might take the piss, as airlines are weird about insulin and apparently you can only take so much, bla bla bla. The other day, whilst looking up flights on AirFrance, I saw a separate part for diabetics, and thought I was lucky I didn't have CFRD as that potentially looked like a bit of an extra headache (we're not even including the whole thing with travel insurance in America - according to my physio, it's more complex than travel insurance with Europe, which was a walk in the park for me -, yet alone adding potentially diabetic and the extra it might cost me, crapppp!)

This was a bit of a long one. And I'm aware it was quite rant-y, but it's allowed. If you're going to tell me that diabetes, CF or not, is 'easy once you get the hang of it', or any thing else 'helpful' like that, go away, before I stab you in the eyes. I'll be fine with it, but right now, I want to rant and I want to complain and I want to be angry about the fact that my pancreas has decided to pretty much pack up and walk out on me. I don't care if it won't be a big deal eventually. Right now, it's new. It might take a bit of time to absorb that bit of information.

I'll finish off with a few photos. I've got 1,200 from Spain, and 900 from Keilder. Won't be putting all of them on, but here's a handful. Or three.

Long year? Long post

This year has been weird. I haven't done anything. Haven't achieved anything. Some time at the beginning of the year these days, I w...