Friday, 27 February 2009

Stat-tastic.

Okey doke, as I'm a total sucker for being 'tagged' for certain posts *cough* Piper *cough* I'll let you in on some stats on me. Although if truth be told, half of what I'm about to say I've already repeated like 5 times. But who cares?!

1. My first name is Megan, my initials are M.A.C (Shut up).

2. I was diagnosed at 3 months old. Before I was diagnosed, I would apparently cry all the time and barely eat, which was probably because I wasn't getting enzymes, and everyone knows it ain't fun when you miss enzymes with a meal. Now imagine that for 3 months.

3. My birthday is in August, and this year I'll be 18 (and yet still refusing to act like an adult)

4. I've had 3 port-a-caths, all in my chest. My first one was when I was 11.

5. I have 6 lovely (!) CF related scars. I'm a human doodle.

6. I'm 5'1 and one of the smallest in my school year (but not THE smallest)

7. My parents noticed my hearing was decreasing when I was 9, but the Drs refused to acknowledge it until I was 10, when at clinic, when one of the Drs left the room and said 'bye' to me, I didn't respond, even though I normally would (Aka, I wasn't that much of a sod when I was a kid).

8. Since moving the the adult chest clinic from the children's outpatients last year, I'm SO much happier and actually have a choice in my treatment, which at first, completely threw me. Since then, I've seen one nurse from the children's and I wasn't cheeky, but I did say 'I'm much more happier here then I ever was at the children's' I don't know what her reaction was on that as they rarely spoke to me, and she kept this up and spoke to my Dad instead. This is mainly the reason why having a choice in treatment threw me - the fact that the (awesome) Drs and nurses spoke to me and let me decide if IVs were a good idea or whatever, was so strange.

9. I have pseudomonas (although any CFer who doesn't have it at this point is taking the piss)

10. I have no CFRD and I'm hoping against anything I won't get it either.

11. When I was 1 1/2 days old, I got the meconeum illieus surgery, and at the same time they took out my appendix. I don't know whether they did this to save me getting appendicitis when I'm older, or just because they felt like it, but either way, I've basically never had an appendix.

12. When explaining CF to friends, I'm totally frank about it and end up digressing into basically every other area of CF too, even if they just ask something on one thing. Aka, I ramble.

13. I use an acapella for CF. Well, I say 'use' but I don't much. Mainly I just cough a lot and see what happens. Before I got the acapella, I had the PEP mask, and before that, I did CPT.

14. Loads of CFers say that when they use TOBI it gets on their nerves, and yet I find it loads more helpful than any other neb.

15. I tried the salty water solution thing (may have been salbuterol) years ago in my neb, and it had no positive effects. In fact, it made me worse.

16. My lung function jumps between high 60s and low 80s depending on how I am at the time.

17. I've never really had the chance to be a CF 'poster child'. Possibly as when I was younger I was fairly healthy and no one would even believe that I was ill. Once, when I was in year 5 or 6, a woman came in to assembly to talk about CF. I whispered to my friend, who knew I had CF 'That's what I've got!' and she replied in a really annoying voice 'Yeah, but shes obviously talking about kids more ill than you who probably faint every day.' (Yeah, when you're 9/10, you consider being ill as in fainting all the time or something).

18. My Mum and I found out that I'm eligible for make-a-wish, so we've applied as my 18th is in 6 months. I have no idea whether or not I'll get one, even though CFers much younger than me have had one and I'm not as healthy as I used to be. Knowing this, I feel slightly guilty and I don't know why.

19. Like everyone with CF, I eat like a pig and yet it just doesn't seem that way.

20. I take approx 30 tablets a day, but it depends on whether I'm taking anything extra (Aka, evil Cipro), nebuliser once a day (there is majorily no time in the morning, unless I fancy missing the bus) and Physio once a day (again, I really need more time, but unless I fancy waking up at 6.30, no ta) Obviously exercise will count as physio when I start going to the gym, but I haven't yet as I'm really pissed at those gym prices.

21. To take my enzymes when I was younger, I would have them mixed in a small youghurt port, and it hasn't affected my likeness for yoghurt at all. I learnt how to swallow them, one at a time, when I was 6, and gradually learnt how to take them more and more. For an average meal I take 5 enzymes, but take around 7 for big meals like X-mas dinner, and have no problem doing that (aside from the first time I tried 7 a few years back, and promptly choked).

22. My nebuliser is an E-flow. Its small so its easy to travel with and it only takes 5 minutes for a treatment.

23. I'm the only person in my family, that I'm aware of, that has CF.

24. I haven't had any sinus surgeries yet, but I think my Doc may have suggested one as I have stupid polyp things. Urgh.

25. My mutations are double F508.

26. My first IVs were when I was a kid, maybe 5 years old, and only lasted two days. It was in my arm and I had a special arm board thing to make sure I never bent my arm. Since then, whenever I got IVs in my arm I refused to bend my arm even though I was told I could. When I was 9 I got my IVs in my wrist from then on, as my arm veins were frankly shot to shit.

27. I weighed around 3-4 stone when I was 11, so the Drs finally said I had to have a G-tube. After a week with a nose tube, I went down to surgery for the first g-tube op, and three months later they changed it to the PEG (which is when I got my first port.)

26. I think the main reason why I was so healthy when I was younger is cause I took dance classes once a week and swimming classes once a week, and swam with school once a week. I started karate when I was 10. I was also a hefty little runner and did well at sports days.

27. In middle school, they decided that I should keep my enzymes in the office to make sure that I didn't loose them. I would often get in trouble if I went in the office at lunch or break for enzymes and there was no-one in the office. Apparently I had to be supervised to take them, to be sure I had taken them, even though both me and my parents knew that I knew how to take them, and the secretaries just loved the control.

I've officially ran out of things to say. This happens A LOT to me, and I usually always forget something on my way to school. I hate it when you get a person or a thing stuck in your head and you cannot, for the life of you, remember the name of them/it. Like I said, it happens a lot and it drives me mad. I have the attention span of a fish!

Wednesday, 25 February 2009

Days like this.

Oh. I'm a mixture of upset, confused, and damn right pissed off right now. And why? Cause I found out that after months of waiting, that the college I applied to have declined me. I don't know why, I'm convinced that it's because it said I'm deaf on my application, as I have the 'relevant A-Level' (art) that was required without having to do an extra year long course.

The art teachers keep trying to tell me that I should do this extra course, that it will 'prepare me for college', but right now, I couldn't care less. I don't want to wait another year doing other art stuff, I want to do photography. One art teacher said 'you'll get to continue with art, and maybe you'll decide you don't want to do photography any more' and I was left spluttering and trying not to slap her. This is the first time in my life I've actually made a proper decision about my future and shes trying to make me think that I should change my mind. I don't want to spend the majority of my life in school. I don't know if I'll be ill next year, I'm doing (generally) OK this year, so I don't want to sit around for a gap year and apply again. I know what people think, that they’re 'not allowed' to discriminate against me because I'm deaf, but for all I know, that’s the real reason why they refused me and are making up some other excuse.

I'm sick and tired, after only one day, of people telling me to not worry myself and not to give up hope. I have a headache from crying, out of anger mainly, and all I can do is wait for a woman from the 6th form office to call up the college and find out WHY they said I can't do the course (it can't be because too many people signed up, I've had my application form waiting since December, but it only went through 2 weeks ago as it was an art course I was applying for.)
Its not like I had the choice to apply to anywhere else either - It costs a bucket load to live on campus, and not to mention the most important thing, I need to be relatively near a hospital with a CF clinic, and not every hospital has one, which is why it makes perfect sense to apply to Newcastle College, when my hospital is in Newcastle too, and I only live 30 minutes away.

Truth be told, I was looking forward to college, and now the overall result is in the hands of a woman named Rebecca and a few phone calls to the college. I’m hoping there’s some sort of appeal thing that I can do to try and change their minds. After all, that’s how I got into QEHS. At first they had declined me, based on where I live, but a letter from my nurse explaining why I should go to QE, where my friends are, and how they help me with crappy hearing and are totally used to me popping pills at lunch and such, totally helped and I (obviously) got into that school.

I’m sick of people talking about their college interviews. No one has tried to say anything helpful. I mean, yes I know that there’s little to say without sounding like a total arse and making the person (Aka, me) wanting to slap them across the face, but at the same time, a hug would have done. I know its not anyone’s fault they have an interview, good for them for getting accepted, but I’m allowed to be a bit pissed at the people who got an offer from all 5 colleges they applied to, when I only had one college of choice with a decent photography course (oh, and they can’t have refused me because the course is full, as there were two identical courses.)

I’m still coughing, unfortunately, and it’s doing my head in. I didn’t cough too much today, but on the times I did, man did it hurt my head (if you remember aforementioned headache, which felt like an elephant, or something to that effect) Cipro obviously hasn’t had much effect on me this time then. If this cough gets worse in the next week (I have an appointment at the hospital for next Wednesday or Thursday) they’ll probably think that the best way forward is IVs. Although its been since the end of November/December since my last IVs, which has got to be a record for me at the moment, almost 4 months without IVs, and I’m thrilled about that. There was a point last year when it looked like regular IVs every 2 months rather than 3, as I was doing quite badly, but as it goes, I’ve obviously improved.

I think I need to stop now, as I’ve been sitting cross –legged on this seat, and my feet have pins and needles.

Thursday, 19 February 2009

I must be getting older.

You might have noticed that I've added something new to my blog. On the right hand side, I have a list of things to do. I don't know whether to put a time limit on it (I know it'll be impossible to do the 101 things in 1001 days, mainly as I cant think of 101 things yet, and as I don't have the time or anything else to do half those things in my list to complete it within 3 years) I don't want to call it 'Things to do before you die' as that sounds morbid. I'm thinking of calling it a 'Things to do before I'm 30/40 or something like that (Screw the life expectancy of CF. I'm bloody completing this list. The statistics can wait). I'll keep adding to the list when I think of something good. I've got about 30 things on there now, and I've already ticked off a couple, which is a good start in my opinion.

After reading Piper's post, I started thinking about people who don't know much about CF until they meet me. (As far as I know, I'm the only person in my school with CF. And there's about 1300 in our school.) Mainly its people like the teachers, although friends are included with this (when they don't know much about CF, but I feel like they deserve a few explanations, seeing as they politely chew back any questions about why I cough/am so small and such) I tell them a lot of things, answering the questions they've finally wanted the answers too, and then when the find out that I have to take almost 30 tablets a day, do physio, have nebulisers and inhalers, and constantly go to the hospital, usually to get stabbed with a needle, they say 'Wow, you're so brave' and yet, I don't feel brave. The things I do to stay healthy are all I've known, and can't imagine life back to when I never had to take tablets. Keeping CF at bay is part of my life, and always will be, so I don't consider it brave when I go through my daily routine. It is nice that they realise that CF isn't a walk in the park, and that they realise that sometimes I'm ill even though I try to hide it, but talking to others, explaining the reasons why I need IVs (by the way, top way to freak out someone, my port, with the tube in my neck) is never the same as talking to those with CF, who understand everything and have probably been through the same things. I should probably just cut this short and say I'm incredibly happy I started this blog, and started talking to other CFs.

I also wanted to gripe a little about Cipro. Honestly, I've been coughing with enough force to pop my eyes out of my head, my poor throat is all raw, and dammit, if Cipro doesn't get it's act together, I will get very, VERY grumpy.

Well... no more than usual.

Friday, 13 February 2009

The One with the Metaphorical Tunnel.

Oh for goodness sake, I'm already sick of my blog template again. I just want a really nice one that suits me, but I can't be bothered to fork out to pay for one made specially for me by people who make blog templates. Ho hum. Oh, and since writing that '25 things' post, I majorly needed cookie dough. So I made some, and ate it. At considerable speed.

Never stand between me and my cookie dough. If you read number 11 on that list, it indicates that I can be known to have a slight temper. Which is very easily justified depending on the circumstances.

I got my PEG out on Tuesday. The nurse still hadn't called up, so we called back up again. The woman went on and on about some sort of bollocks that could be very simply translated as 'Oh... but I can't be arsed to do it', so my mum took it out instead, as shes qualified for that kind of thing, seeing as she's a nurse, and knows all about PEGs and such. Anyway. I'm FREE!!! Its such a weird feeling. I've had that thing in my stomach for 6 years, I was well and truly sick of catching it, as that is a disgusting feeling. It also was noticeable through t-shirts, as there was always some unexplained bump in the left side of my stomach. So I'm obviously so bloody glad to have it gone. For the past couple of days since I had it out, I've been having uncontrollable 'YEY!!!' moments about it. Its really really strange! I had the dressing changed the other day. Apparently the inside bit (so basically, my stomach) heals first, within about an hour or so. But the outside bit? Nah, that's still a hole. The only way to describe it is probably like an in-belly-button. Yeah, its that weird. It'll take a few weeks to heal fully, but that is totally understandable - it was a hole straight through to my stomach, so I didn't expect it to heal up immediately. (Although when I looked at it when the dressing was changed, I did get a shock, as it is majorly weird to have a hole in your stomach. Plus when I was told that it would start to close up fairly soon after it was taken out, I thought that meant the entire thing, not just the bit in my stomach.) Unfortunately, my PEG hole is rather uncomfortable. It wasn't hurting the first couple of days when I got it out, but now... OW!! I would call it a 'dull ache', but its not. I find it really difficult to describe something CF related to people.

So. Half term this week. Yey!!! We actually got out half a day early on out last day before half term started, as it was snowing again, so the buses came to pick everyone up, to avoid having to pick us up at the usual time, and having to drive through 3 foot of snow. Not that we got 3 foot of snow. It was basically just a precaution, as driving on a snowy road is never fun. So I got home early, and my sister was let home early too, so we made a snowman! I haven't made one in years. Unfortunately it rained overnight, and Mr. Snowman caved over. He was a good snowman though. He had eyes, nose, mouth, arms, hair, buttons... and feet. Yes, feet. Made out of two 'petals' that had fallen off an old garden flower windmill.

I am totally aware that this post is slightly random today. But hey, back to more CF stuff. I'm still coughing all night, which is starting to take it's toll on my throat. Its incredibly irritating to continually wake up at 2am, coughing like mad and gasping for breath. I really hope Cipro gets a shift on soon - I was hoping that Cipro would delay any need for IVs anytime soon, but if I don't stop coughing like this, it'll look like IVs will be inevitable. One of the irritating things about CF is that it takes at least twice as long for a cold to get better, so obviously this has delayed the Cipro at work, but still... its really starting to piss me off.

Wednesday, 11 February 2009

25 things.

25 things about me, cuz Jessica tagged me to!! What you're supposed to do is write 25 things about yourself, then tag 25 people to do it too. I don't even know 25 people though the eternal blogosphere, so I'm thinking, you read it, you're tagged. Mainly because whenever I do tag people to do things, they've usually been tagged already. I told you I don't know many people!! Right, fasten your seat belts, we're going in...
  1. I am so unbelievably fussy about food, that I have no favourite meal. As crumpets don’t actually count as a proper meal!!
  2. I am a self confessed ‘lost’ addict. No matter how confusing and time jumpy it gets, once you’re hooked, it’s pretty damn hard not to watch the next one.
  3. I found out about the CF life expectancy when I was 14, from someone who was supposed to be a friend. And the worst thing was, she handed these pages of ‘research’ (three printouts from a site about CF) to me with a massive grin on her face. I’ve never forgiven her. And never will.
  4. I’ve recently fallen out with my oldest friend, who I’ve known since she was born. She started smoking, and asked me if I did. I practically slapped her. She knows I have CF, knows that its hell on earth for me sometimes, and everyone knows that you can get a chronic illness from smoking. The fact that she’s 15 only increases this chance. She said she started smoking ‘because her friends do’. Way to smack down peer pressure, huh? Possibly an overreaction, but y'know...
  5. I only decided I really liked photography less than a year ago. Now I’ve applied to a 2 year photography course in college!
  6. I’ve never been fully conscious in the recovery room after an operation. I’ve woken up, maybe once in there, but I was incredibly groggy and my eyes were still blurry. I still wonder what the recovery room looks like, and try and wake up properly, just to get a look.
  7. I haven't told any of my friends or family about this blog. I'm not even sure if I want them to read it or not.
  8. When I'm older, I want a dog, as it'll give me a good excuse to get up off my arse everyday to walk it, thus getting at least some exercise. Unfortunately my sister is allergic to 'animal fur/pheromones' which means either I don't get one, or she never visits. Bugger.
  9. I am obsessively tidy, and will tidy things if I get a chance. Even my little sister's room, despite the fact that she will mess it up within 10 seconds.
  10. My bedroom is the only thing that is allowed to resemble a trash site.
  11. When I was 13, I punched a 17 year old in the face, for taking the piss out of me to his friends, because I'm small. Suffice to say, it turns out I have a pretty hefty right hook!
  12. When the time comes, I DO want a lung transplant
  13. I don't actually like plain chocolate much, and hate white or dark chocolate
  14. I never want my hair short. Well, I want it long enough so that I can always hide my hearing aids behind my hair
  15. I’ve never worn my hair up in a pony tail (or in anyway that shows my ears) for school, for… um… 6 years. Ditto amount of years that I haven't talked on the phone.
  16. At school, when you’re in year 10, you get work experience for 2 weeks. I was told to go to ‘collectables’, a place where A LOT of fragile stuff is. I feel it is quite an accomplishment that I only broke 4 things. That I’m aware of.
  17. I got a B in food technology for GCSE (which was a mix of coursework and exam work. It would have been a better grade had I remembered all that crap about baking bread, and yeast and such, during the exam)
  18. I am apparently quite a good cook. Strongest points are probably cakes.
  19. I love to eat uncooked cookie dough. Frequently.
  20. My sister dyed 6 pink streaks in my hair when I was 14. I. Looked. An. Idiot.
  21. I’ve had 7 operations.
  22. I had braces for only 6 months.
  23. I learnt tap, ballet and jazz/modern dance for eight years. The teacher was a complete bitch, and yelled at tiny 3 year olds when they did things wrong.
  24. I daydream a ridiculous amount
  25. I have a terrible memory. I’m sure I thought of several other things to write here, but obviously forgot them before I got a chance to write them.
If you didn’t get bored during that, have a cookie. You deserve it!

Monday, 9 February 2009

The waiting game.

Last week, Jenn passed away after a sudden decline. I'd only been reading her blog for about a month, and never commented, even though I found that we're similar, in the fact that we've both suffered hearing loss from Tobramycin. Sucks, doesn't it. Its confusing when you miss someone you haven't met, or didn't really know. She was only 28. That’s not an age to die. And that is why I hate this disease.

Something I forgot to mention last post… my hospital file now has a big blue sticker on it that says ‘Infection control’ which apparently means that they have to check for MRSA during bloods and stuff, but also, according to the nurse, if I get ‘ill’, I have to go straight into hospital apparently, rather than just have IVs at home like I would usually. This is weird news for me, as no one had told me this before and I had MRSA back in November ish.

I hate hospitals, mainly as I have a super short attention span, get bored easily. And they never put me in a cubicle (thus contracting pseudomonas when I was 7, the bastards) But now, this big blue sticker supposedly means my own cubicle if I ever have the need to go in. Which hopefully won’t be a long time. Last thing I need is a stay in hospital to wreck up my coursework and such. The main reason(s) why I hate hospital are those personal TVs. They don’t have a little button to put subtitles on whatever you’re watching (even though other hospitals do) they only have one channel with subtitles. Which rather pisses me off, as I can’t watch anything good.

Hopefully, if I ever have to have a stay, I’ll be on the adults ward, and they’ll actually treat me like an adult. One of the main reasons why I’m glad I’ll get my own cubicle, rather than a bed ward, is the fact that I’ll probably be on a chest ward. Seeing older people dealing with CF, or anything similar, would scare the shit out of me, and all I’d be able to think of is ‘that could be me on a few years time’.

Unfortunately, I still have my PEG in my stomach, as the nurse who is to take it out, was meant to call the other day, but never did. So we called the hospital back up this morning, and they said she'll call today. Its almost 7pm. I wanted to get this thing out tomorrow, as I'm off school, as my teacher isn't in, which means there's little point in us turning up.

The cipro appears to be working, I hope, but I'm still coughing loads, and I'm incredibly impatient, so I need to give it at least a couple more days. Plus, I had a cold, which always delays treatment effects for me. But my left side hurts a lot. Its the exact opposite side from when my chest was rattling in my right lung. This is the exact same place, but in my left lung instead. Owchy. I've coughed my throat red raw, so that's annoying too. Come on cipro, no sleeping on the job!

Friday, 6 February 2009

Mixed emotions.

Yey. I'm doing well apparently! My lung function was both up and down at my appointment yesterday. The first bit was up, and the second bit was down. I'll get back to you on that when I get the letter saying everything. I forget stuff so easily! On an even better note, and trust me, there are some mixed emotions about this one, I gained 2.6kgs! Which means that I can finally have my PEG tube out, which I've had for 6 years (hence mixed emotions -I'm so freakin' glad about getting rid of it, but its been there for 6 years! Plus it’s not the nicest feeling having that tube taken out. And the chance, well, really small chance, that I could need a stitch in it. Ahh!) Anyway, where was I? Right, so I've finally kept my weight up long enough to have the PEG taken out, Oh and the physio said that the rattle is most likely just a plug or something. Fun.

The physio also said that I should start going to the gym for exercise, as I honestly don't do much. I'll admit that it’s a good idea, but I'm not keen on the price of gym membership. There really should be some reduced rate for CFers. It's not like we have much of a choice - going to the gym practically becomes religious when you're dedicated to improving your health.

I got started on cipro last night (my idea - I said I felt well enough not to need IVs, but I should have cipro as I'm coughing and it'll be like a top up for me, without resorting to IVs, as the Doc wants me to cut down on IVs to avoid future problems. Like what? More deafness?) These cipro tablets have freaking annoying rules though - not to be taken at the same time as milk. And I eat cereal in the morning. So obviously I forgot to take my tablet this morning and I got so annoyed with myself, as I’m at school and is a good 30 mins away from home. What annoyed me more than this was the fact that as my bus took its sweet time to pick me up, I could have ran home, got the cipro and gotten back to the bus stop before the bus had even gotten there.

Damn.

Monday, 2 February 2009

My day off.

So far things are going well. I'm not coughing as much as I normally would at this point sans IVs, although maybe just enough to suggest maybe going on cipro, when I have my appointment on Thursday. Also, I'm gonna stay in that Dr's room until that rattling re-appears, as it always disappears whenever I'm near a hospital. Today, I spent a large chunk of time rattling and attempting physio in a bid to get rid of the rattling (which I was clutching on straws at the hope it had actually decided to bugger off seeing as I hadn't rattled for about 2 days.) but all I accomplished was feeling too puffed out to cough more. And still rattling. I don't know what it wants from me.

Also, on Thursday, I'll be seeing if I've gained enough weight to have my PEG out. (No that's not me, the only way to put a picture of my PEG up is to put it directly on here. And frankly, I'm too much of a wuss to do it. Its not the most attractive thing to have in the middle of your stomach. Plus, the whopping great scar across my stomach too. Urgh. Actually, when I look again, my scar across my stomach is the same as this one, Only a tad longer I think) Anyhoo, according to the letter from my last appointment, I weighed 42.2 KG or something. And according to the scales at home, now I'm 45 KG. I really hope that those scales are right. I've been wanting it out ever since I got it, when I was 11.

Yesterday, my laptop cord was wrapped round the stool it was sitting on, as I was sitting on the floor, next to the fire. And when I got up, completely forgetting that the cord was busy doing the tango with the stool, it crashed down on my little toe. Ouch! I went to the A&E a little while ago. Luckily it ain't broken (even though it felt like that. Ah well, wouldn't want to break my streak of never having broken a bone in my life would I?) But the bone is badly bruised. The x-ray they took showed a bump on the bone, but no break. Oh, I also got today off school due to the never ending blizzard. Every time you think it's starting to cool off, and may be a good time to go on a little trip around the village for cool snowy photos (despite a protesting little toe) it starts to snow like mad again. I don't go out with my camera in a blizzard like that - I love my camera too much to soak it through with snow. 

World mental heath day

So today was World mental health day. It seems a shame that so many people only feel able to speak out about mental health on one day of the...