Tuesday, 30 April 2013

Meningitis scare & Kalydeco!

Hiya everyone :)
Everything's been pretty good lately so I've not really had much to blog about CF wise! On slight issue has been on Friday. I came out of work and realised I had a rash on my leg, got mum to have a look and see what she thought and as we pressed it, it didn't disappear (not a good sign - most rashes go away when you press with a glass/finger!) so we went to the GP to pick up prescriptions and asked on the off chance if a doctor was available and luckily there was or we would have had to have gone to A&E! So we went in and explained to him what it was, showed it and said that I felt fine.  It is NEVER good when a doctor looks at a rash and goes 'oh dear, now that does concern me a lot..' haha. He asked how I felt and I said that I've been absolutely fine, just have a rash on my leg! He said that if I was a little kid he would have rushed me straight to hospital as it looks exactly like meningitis but as I'm old enough to understand when I don't feel well and that I WAS feeling fine he then calmed down as with meningitis I'd be feeling VERY unwell and also the rash would be spreading quickly, which it wasn't.  So he said to go home and relax for the weekend - he couldn't say it wasn't meningitis just in case I woke up on Saturday feeling ill in which case I'd have to go to A&E. I drew round it so I could see if it had spread but it was fine and now it's pretty much gone! 
Bit of a panic though when a doctor mentions meningitis! 

Today I had clinic for a Kalydeco check up :) It went really well and my lung function had gone up even MORE - to 2.3 litres, figures I haven't seen for nearly 2 years!!! Dr Higton was very very pleased and didn't really have much else to do. Shelly took some bloods for me and gave Paddy a flush.  My next appointment is for three months time - yes, THREE months! I haven't had an appointment that far apart for well over a year! 

Lastly, the month of May is CF awareness month.. I will probably do a blog on it in a couple of days so please share and if you follow me on twitter, pretty please retweet some of my CF ramblings or tweet it yourself with the #cysticfibrosis #cysticfibrosisawareness hashtags! Thank you :) 

Wednesday, 10 April 2013

Quick update - MRI scan!

Just a quick update to let you all know what I've been up to! The doc said the MRI scan for my leg pain would come through in 6-8 weeks but strangely a few days after my appointment I had a phonecall from a hospital in Farnham saying that they could do it this week.  
Yesterday (tuesday) I went there and was a bit apprehensive as I knew it'd be quite small - I've had CT scans and they're fine as it's not too enclosed and there's space but when they started to push me in to the MRI tunnel I nearly had a bloody panic attack as it really is tiny!! There was about 3-4 inches between my nose and the top of the tunnel.  It didn't help that I had to have something placed over my head so that made it feel worse.  They put headphones on me as it is pretty loud, plus I could listen to Michael Buble although the machine was so noisey I couldn't really hear it. At first I kept swallowing as I was worried but then the guy said you can't do that as it makes the pictures blurry.  But I managed to go in for the 30-40minutes, trying to keep myself calm the whole way through as I was so claustrophobic! 
It's quite funny because people were saying that I'd had a lot worse done to me than just a scan but it felt so horrible because it was so small - it didn't hurt a bit.  At least if I'm having a bronchoscopy I'm sedated and all out of it so I don't have a clue what's happening! Anyway, that's all I have to say really, just a short update on that! I don't have an appointment until 30th April so that's good :) 

Thursday, 4 April 2013

So apparently I have 'unhappy nerves' & I'm going to be electrocuted..

Meg & I & the very
large cocktail
I've mentioned before about the mysterious leg pain that I randomly get and that for 7/8 years NO doctor has had a clue what the heck it is.  Just agonising pain.  Dr Ho referred me a while ago to a neurologist and today I had my appointment.  The doc seemed quite nice and we went through the usual background of my CF and medication list (which I'd printed off beforehand as I can't always remember the dosages of all of them!).  He did a reflex test on my arms and legs - for this I had to either push or resist with my arms/hands/legs/feet and he then pricked certain parts of them with a little needle to see if I could feel it.  He then used a two pronged fork thingy (technical term obviously ;)) to send little vibrations on my fingers and toes to first see if I could feel that but then I had to shut my eyes and tell him when it had stopped (when he held the two prongs it stopped vibrating). He also looked into the backs of my eyes. After all of that he said that usually women have a strong reflex in their legs compared to men, they aren't sure why, but mine were very strong so there could be a reason for that! 
All in all he said he also wasn't sure what on earth it could be! But he said he will book me in for a scan for my back to make sure that's okay but it takes 6-8weeks for that appointment to come through and also, has he put it, "we will electrocute you!" It's pretty much a test where they send electric shocks through your body starting low and getting higher to see how your reflex's react and how quickly it travels etc.  He said it can be quite painful but wont cause damage - so great, I'll be electrocuted! To be honest, I don't even care, I just want to get to the bottom of what the hell is wrong with my bloody legs!!!!!!

Meg, Me, Jess
Girls night out :)

I've had a busy couple of weeks as it was the last week of term at school (work) and then obviously it's Easter Holidays so I've been seeing friends and family.  I've got a few pictures of what I've been up to :)  I just with this weather would pick up.. it's the 4th April and it SNOWED today - that's just wrong! Please somebody send the sun to warm us up!
Have a lovely Easter break if you're lucky enough to either be in school or work in a school and if not, have a lovely weekend tomorrow! 

My little cousin Livvy & me on
Easter Sunday