Tuesday, 21 July 2009

So much to say......sorry for delay in blogging! pt1

Firstly let me appologise for not updating this blog sooner. As you will see, i've had quite a bit on my plate recently.

I'll start with my good old friend, health. Had an appointment at the Brompton a couple of weeks ago and it went pretty well (considering how bad things had been at the beginning of the year). My lung function has stablised at 25% and my weight is beginning to go down (thanks to the reduction in steroid dose, so beginning to drop off some of the 3 stone of water i'm carrying!!). However, I had a bit of a scare last weekend when I become very lethargic, ached from head to foot and felt permanently sick. Hubby confined me to bed and called out the doc, worried that I may have picked up swine flu but I hadn't (no temperature, which apparently is THE major sign). I was diagnosed with exhaustion and stress and to take it easy over the next few days with plenty of bed rest (and when you read the rest of this blog, you'll understand why i'm a bit stressy).

So what has been stressing me out and causing me sleepless nights? Builders, for want of a better word. Hubby and I decided that rather than move house, we'd extend. So first of all we had to prep the area so that the builders could start with the ground works. This involved demolishing our conservatory and moving our hot-tub and gazebo.

All of a sudden our house seems very small.

Anyway week 1 of 14 begins.....GROUNDWORK!!!

First thing the groundworkers have to do is reposition a (broken) groundwater drain. Only issue was that not only was the original drain never made properly (water was draining into my foundations!), the wrong sized pipe was used AND it was capped off with a drain shaft and manhole cover that you would usually find at an industial site or motorway, not a residential home. This picture of me standing on something called a "buscuit" is what was surrounding the manhole under the ground. The groundworkers and building regs men were all absolutely astonished.

Just after this photo was taken is when all the fun and games begun, but i'll blog about that in the next part.
Blog more later

Wednesday, 1 July 2009

Missing posts

Can anyone see my last post titled Naughty naughty?

Everytime I click on it just to check on the spelling and that it makes sense, I end up with a blank page. It is probably my laptop having a giddy but I just want to make sure thats all it is.

Thanks peoples and will do another proper update shortly.


Tuesday, 30 June 2009

Naughty Naughty!!!

I've nearly allowed June to pass me by without blogging. Naughty me. I do have many good reasons, for instance my house now looks like a bomb site thanks to the builders digging up my garden (am having an extension put on my house - pics to follow soon) and having an allergic reaction to suntan lotion which basically covered me in a chemical burn - Ouch.

Health wise (excluding the allergy), i've been a bit up and down (mainly due to the humidity and heat) but for the main part i've not been too bad. Although i'm still carrying a lot of water (thanks to my friend Mr. Steroid) my outsides seem to be either drying out or falling out - oooo eerrr!!! lol My hair seems to be coming out by the handful and my skin and lips are sooo dry they're about to be classified as a desert region, as no amount of moisturiser and blistex seems to be helping.

To top it all off, I thought i'd treat myself to a nice new camera to get pictures throughout the 14 weeks that its allegedly going to take to build my extension. BUT, (don't you sometimes hate it when those 3 letters form together) the charlatan I paid my money to never sent me the camera. Thank god I purchased it through Amazon but it is just so slow to get the money back. Fingers crossed that will come back in the next week and i'll try again.

I've going to a horticultural show on Sunday and am hopefully going to submit a few of my items into the competitions (a Victoria sponge cake, cheese and onion quiche and some flowers and veggies from my greenhouse and veggie patch) and on top of all of this i've got a hospital appointment next Tuesday up in London (I really hope this humid weather will have broken by then as i'm not sure how well i'll do trying to walk around in the middle of London as well as sitting in a hot un-air conditioned hospital) and will be chatting about lung transplants again and when I will be assessed.

Well although this is short and sweet for now, I promise to blog a bit more frequently and hopefully with some fab pics when I finally get my new camera.

Blog more

Vix xxx

PS. just wanted to say RIP Farrah Fawcett and Michael Jackson, both influences in my childhood in the 70's and 80's. Hope they are both at peace now.

Thursday, 28 May 2009

Puffy, Tired and Whingey!!!

Over the last few days I think everything has definitely caught up with me. My brain is still as active as it has ever been and I forget (or at least try to) that my body can't keep up with it.

One minute I can't sleep and am awake at 3 am, the next i'm sleeping all day and all night (except for the obligatory midnight run to the loo...lol)

I thought once I dropped to 5 mg of the steroids my swollen, bloated mass that masquerades as my body, would start to go down. It's been 4 weeks now since being told not to drop any further and staying at 5mg and I can't really see any difference at all. I know I shouldn't really whinge as at least on the steroids I can kinda breathe ok and am relatively mobile (to an extent) but i've gone from a size 10 to a 14/16, i've developed the most horrendous stretch marks and the appetite the size of a man twice my size (which i'm having to be really careful with so as not to spread my bulk any further). The only real positive is that I know have the most enormous boobs....lol I've gone from a 34A to a 38B....which hubby doesn't mind so much....lol

I just think it's not the best start to married life for my wonderful hubby, although he keeps telling me that i've never looked so beautiful......think i'll book him into Specsavers...lol

Anyway, my step dad has now finished playing and having a whale of a time redesigning my greenhouse and building a bench to potter on and we now have tomatoes, sweetcorn, lettuce and strawberries growing as well as a few plants that need starting off before being put into my garden (will try and get some pics for my next blog).

My sister and 2 of her mother and baby friends turned up today to go for a "swim" with the babies in my hot tub which has totally knackered me out but my sister has persuaded me to go out with her tomorrow (think i'll need my wheelchair though) to do a bit of baby clothes shopping followed by an evening with one of the other mummy's who's holding a candle party. Well it's a night out and a glass of wine.....which I think after the last few weeks I may treat myself to as I don't drink that often.

Well i'm off to start my evening round of meds. Just want to also say well done and big congrats to Jo for getting through the assessment process and being approved to go on the transplant list for some new lungs. I'm so happy for you Jo, hope you don't have to wait long babe.

Blog more later


Tuesday, 26 May 2009

Bank Holiday Blow Up

Well as usual I over did things over the bank holiday and am now paying for it.

I first started with organising and preparing for my brothers 30th birthday. Making trifle, blamange and banoffee pie as well as organising everyone else to bring the usual sarnies, sausage rolls, pasta salad, mini sausages and lots of other party foods was a huge feat. By the time everyone turned up with their plates and it was all put out I was ready for my bed....lol

Anyway a good time was had by all and even managed to get a reasonably early night.

Just as well as hubby and I decided to empty our garage and other junk we've been storing at a boot fayre on Sunday. This meant early morning, so 6am the alarms went off and by the time we got to the boot fayre it was already 3/4 full! What time some of these people got to the fayre I don't know but they must be mad. Anyway, according to the fayre people it was the biggest fayre ever with the rest of the field filling up with stalls after we arrived. Considering we got rid of a load of stuff that we were originally just going to junk at the tip we made approx £150.......all going into the extension fund. To top it all off, come midday we were done so headed home for a well earned rest in front of the box watching Jensen Button storm to victory in my most favorite place on earth, Monaco. (If you ever get the chance to go, it's a must....just an amazing place).

Monday was a completely do nothing day. My body had blown up again (thank you steroids) from over doing things over the last few days. I now look liked a cross between the Michelin man and Jabba the Hutt, and I just felt permanently tired. I pretty much napped all day and then slept all night.

Today i've still been pretty wiped out. My sister however, phoned and begged me to help her and take her to Canterbury, so she can buy a baby mattress, as little Isabella is not so little anymore and has pretty much out-grown her moses basket. So after running around after her (in the purely metaphorical sense) i'm now totally zonked out.

I still haven't heard from the Brompton yet about my assessment chat. Might give them a call in the next day or so.

Well that's me all up to date......time for some more meds, then and then an early night.


Thursday, 21 May 2009

Naughty Me!!!

Sorry for not blogging sooner but life has been utter madness for the last few weeks.

Between cooking cakes and making party food for my sisters party, granddads party, as well as for my hubby's party, clearing out the house (going to do a boot fair this weekend) in readiness for our extension build, which hopefully should start next month, getting poorly and getting more antibiotics to try to stabilise AND a visit to the Brompton to discuss the possibility of transplant, things just haven't stopped.

I made the most enormous chocolate fudge cake for my hubbys and since then have been taking orders from friends and family to make cakes for them...lol My mum has even entered me into the local horticultural show next month so i'm doing lots of practice runs, much to hubby's delight.

Am holding a party for my brothers 30th this weekend and as well as cake, am making bannoffee pie as it's his favorite. The things you do for families eh...lol

Anyway, went to the Brompton on Tuesday and my lung function had dropped a little bit (25% from 27%) but i've also dropped my steroids from 12.5mg to 5mg so they were happy. I've put on a little more weight but they think that i'd put on a lot more and have begun to loose it from the steroid reduction. They confirmed i'm probably suffering from sleep apnoea, but that should ease as I loose the weight.....fingers crossed. They also think that by staying and maintaining on the 5mg of steroids the breathlessness should ease and I should hopefully stabilise.

We discussed the options of transplant and they think now is the time to go for assessment. So as the Brompton does assessment in house, i'm waiting for my cf nurse Mille to phone me with a date to go up for the 1st part of the assessment which is a 2 hour chat and "presentation" from her. Then it's onto the 4 day assessment of tests, hopefully in the next 6-8 weeks.

With all this going on i've also got my in-laws coming to stay for a weekend next month and the start of our extension happening, so it's still all go.

Anyway, I will leave it there as i've gotta go and take a couple of nebs before bed....the joys of cf...lol

Night all xxx

Tuesday, 28 April 2009

A long over due catch up

Where do I start.....well the outcome from the bank issue was another 3 phone calls and a letter and still the issue hasn't been fully resolved. I've now received my payment and they've admitted fault however i'm still awaiting an answer based upon my complaint as to where my original sick note (with all of my personal info on) has disappeared to. I should hear by the end of the week but i'm not holding my breath.

Breathing wise i've been a little up and down, mainly due to catching my little niece's cold. It mainly stayed as a head cold but a little of it has gone to my chest but I seem to be fighting it off (although having a few breathless moments every now and then).

My mum flew back from a month in Cyprus on Sunday and sis and I took her out for lunch yesterday for a big girly catch up and to celebrate her birthday.

Hubby and I have sorted out our wills now that we are married. A bit of a strange experience I have to admit. They even ask how you want to be "disposed" of and who do you want your estate to go to if you both bite the bullet.....lol Very surreal.

Hubby and I also appeared on TV on Sunday. It was a program all about our wedding day and included interviews with our friends and family. Was really funny watching ourselves back and I only blubbed once towards the end when my mum was talking about our 1st dance...lol Here's the link if you want to watch (torture yourself...lol) online:


I'm now in planning mode as it's my sisters birthday in a few days time and she's having a BBQ and I said i'd bring some salads and bits and bobs. Then it's my Grandpa's 88th birthday so have said i'll make a cake for his birthday tea. Then it's my hubby's birthday and we're having a retro kid's party theme for it, so lots of jelly and ice-cream and pineapple on sticks and things...lol

Lots of birthdays and cooking ahead....health permitting.

Also now stepped down to 7mg of steroids so i'm hoping the water retention is on its way out and will get "my" body back.

well that's me for now. Will blog more soon