Saturday, 15 August 2009


Its official... I am climbing walls!!

Today I am having one of those meh! days... where you try and do stuff but you just really cannot be arsed!

Thursday, 13 August 2009

Picture This!

‘Let’s Work Together’ is the theme for World Arthritis Day 2009.

The aim of this project is to provide inspiring pictures of people with rheumatic diseases who have found ways to work, despite of some of the challenges they may face because of their condition.

Walk A Mile In My Shoes

This morning I had a number of texts from friends, highlighting a comment made by the UK Health Secretary - Andy Burnham.

Horsing around at Hospitals

As mentioned in my previous blog, I had an appointment at the voice clinic a couple of weeks back...

I've always had a husky voice... something that has gone down well with certain males... plus if I ever wanted a change in career... I could always set up my own hotline ;)

If you imagine Honor Blackman or Mariella Frostrup... then thats me....

However my voice would also occasionally sound like a boys voice breaking and this fascinated my rheumatologist, Dr Barbara Ansell. I spent many an hour with the ENT specialist, having an endoscopy to see what was causing it..... Unfortunately it didn't offer any answers, mainly because I used to fight it lots so they couldn't get the endoscopy in the right place...

It wasn't until I had my first hip replacement in 1997, that my voice made a real change... it went very squeaky and I had coughing fits.. This time my rheumatologist decided to get me back down to theatre for a biopsy.

It showed that my vocal chords had a lot of inflammation.. to the point that one half was so swollen it would prevent full movement.. hence why my voice was husky... I believe the diagnosis was referred to as Cricoarytenoid Arthritis.

There wasn't a lot that could be done.. other than the occasional corticosteroid inhaler to ease inflammation, and speech therapy in order to train the voice in a different pitch again to ease things. Surgery was discussed, removing the swollen part of the vocal chord but risks were extremely high in that other parts could be damaged and could lose voice altogether.

So I decided to live with it.. I liked my husky voice.. it was part of me and the only thing that got me down was when people asked if I had a cold.. it was a bit tedious at times.

Earlier this year though I started having coughing fits for no reason.. it was as if I went to cough and swallow at the same time and I'd end up choking.. quite frightening at times! My voice would also start changing.. going very high pitched.. to the point that only dogs could hear me! Swallowing became a bit of a problem. It felt like the bit you swallow with was getting stuck, so I'd have to gulp.

My rheumatologist decided to refer me back to the ENT specialist who I'd not seen since 1997.

The appointment was not as scary as when I was a child.. he was just as kind & gentle as I remember plus things have moved on and the endoscope was a thin tube with fibre optics so you barely noticed.. it just felt a little uncomfortable when you had to swallow because you wanted to cough. He was happy with the vocal chords.. they weren't as swollen, and there were no nodules or growths which is always a very good thing!!

So a referral was made for me to see the voice clinic team.. made up of an ENT surgeon and speech therapists...

First task was to complete 3 lots of questionnaires.. then talk things through with the team... Next on the agenda was to spray the back of my throat with a topical anesthetic which numbs the area. This made me panic a bit because it feels like your throat is closing up and you can't feel yourself swallow... nasty! On the positive side, the spray did taste a like banana hehe..

The surgeon then had to hold my tongue, while he placed a rigid endoscope into my throat.. This is filmed so they can look back at significant points.. You are then asked by the speech therapist to make silly noises... Eeeeeeeeeeeee

Unfortunately at this point I started to gag.. to the point of crying so they had to stop.... On to plan B.... spray my nasal passages with a topical anesthetic and then push a flexible endoscope up and into the throat... This wasn't as bad because by this time my nose and throat were numb...

The good news was the vocal chords looked healthy.. muscles very strong (that comes from having more rabbit than sainsburys!)

The bad news was the epiglottis was very red and inflamed... and so came the diagnosis... Laryngopharyngeal Reflux

So what is it??.....

Well.... there are two sphincter muscles located in the esophagus: The lower esophageal sphincter (LES) and the upper esophageal sphincter (UES). When the lower esophageal sphincter is not functioning properly, there is a back flow of stomach acid into the esophagus. If this happens two or more times a week, it can be a sign of gastroesophageal reflux disease.

If the upper esophageal sphincter doesn't function properly either, acid that has back flowed into the esophagus is allowed into the throat and voice box. When this happens, it's called Laryngopharyngeal Reflux, or LPR.

For now I've had my Lansoprazole increased to 60mg per day and been prescribed Gaviscon Advance. I'm also gonna see a speech therapist who will do voice coaching with me, and help train me to use my voice in a different pitch so it'll take anyway any further pressure...

I guess I feel a little deflated because it just seems another thing on top of the arthritis and sjogrens but at the same time I feel relieved that I know whats going on with my voice, and I have a chance to hopefully sort it before I lose it altogether :-D

Backsides and Blogging

limey! It has been a while since I was last here!

I first started blogging because I wanted to get my thoughts down on 'paper' so to speak.. I wanted to share my experiences.. Its not quite worked out that way though..

The reasons behind this could be because I have been busy, or recovering from the 2 lots of surgery I've had in the last 6 months...

Truth is... I've not had the motivation. It has been easier to get up, take meds, sort myself some food and then plod around for the day.

2 weeks ago I was given the all clear by my surgeon and started driving again. I thought this would be the start of a new found independence... finally being able to get myself out, and not having to rely on other people.

The first time driving was awe inspiring.. I felt a sense of freedom, like a horse being let out from the stables, running through the fields, feeling the soft breeze against my skin.

I then had another appointment at the end of the week... this time at the voice clinic at my rheumatology hospital. The drive was 120 miles so I stayed the night before at my Grandads.

Reason for the voice clinic was because I was diagnosed with arthritis of the vocal chords in 1997 and lately my voice has suddenly been changing pitch. I've also had problems with swallowing so I was off for more tests to find out why.... It was a bit of a stressful time but it was good to get a diagnosis (even if it wasn't one I expected!)

So after my appointment I treated mum and I to a pub lunch and cream tea... we had a fab afternoon and it was lovely to have girly time... I do miss my mum..x

I drove home on the Saturday and boy did I hurt the next day... doing a round trip of about 350 miles in my first week of driving... not a good idea!

That was when my motivation started to wane..... I'd make plans with all the intentions of seeing them through but when it came to it.. I just felt I didn't have the energy....

2 weeks on and I'm trying to get back into a routine and work on upping my stamina.. its a slow process but I've got a lot of support behind me so I know it won't be long before I'm back at the top of the ladder... I just need the occasional kick up the backside ;)

Monday, 6 July 2009

Headbanging and Rollercoasters!

Ok so I got my ass in gear earlier and got dressed *yay*

Then decided to stick on some tunes as they always lift my mood.. stuff that I can sing & dance along to (read dance as in waddle my ass and sing as in strangle a cat!) Tunes like Chrissie Hynde - Live & Let Die, Santogold - Creator, Beyonce - Freakum Dress, Jack White & Alicia Keys - Another Way to Die, Timbaland - Apologize, Goldfrapp - Black Cherry and Jai Ho - PussyCat Dolls.

Anyway did a few bits.. folded washing, put another load on for tomorrow, peeled & chopped potatoes for tonight's dinner, planned tomorrows dinner and then sat down for a rest... Not overdoing it is it? Except that 10 mins later I was overcome with such a banging headache.. immense pressure as if my head was going to explode and this was accompanied by a roller coaster tummy... it made me so sick!

The reason? Shortly after we had an almighty clap of thunder and the rain came down! Whenever we have thunderstorms I always feel yuck just before but nothing like this before... and now we've had it I feel just dandy!

So now I've got my feet up with a cuppa tea and everything else can wait until tomorrow...


Ok... so the time is almost 1.45pm and I'm still sat here in my dressing gown! I feel bad writing that fact but also with a slightly "and?" feeling.. I had a lie in until 10am and felt good for it.. got up with all intentions of getting dressed, having brekky, taking meds and then getting on with some housework (only a little bit as I'm still only 3 and a bit weeks post op)

Instead I had brekky (good start!), then took meds (even better!) but thats where its stopped...

I know I need to get my arse out of this chair.. in fact I'm sat here thinking well why don't you stop writing and get your arse up..

Truth is..... I feel like I have no energy.. I have been walking around a bit without my crutches but now my quads (more specifically and for those in the know.. the vastus lateralis) are saying they're at their limit and I need to use at least one of my crutches...

So I know that thats going to limit what I can do but maybe thats a good thing because it means I don't overdo it... and hubby did leave strict instructions that I wasn't to overdo things!

Ok then... thats settled then... I've had my rant... I feel slightly better and so I shall go get dressed and see what activites I can partake in with one crutch...

Catch ya laters!

Thursday, 18 June 2009

Sunshine and Showers

Looks like today could be a brighter day! Its a bit overcast at the moment but hoping the sun might creep through later :)

Ended up with a headache from hell last night but it seems its just tiredness catching up with me... had a fairly good night although still turning over onto my side....

Thanks to Sara for the tip on the pillow... I remember I was allowed to do that when I had my first hip replacement but its not been recommended this time... just the whole 'you must sleep on your back for 6 weeks'... I shall certainly check...

Just had my brekky and Redbush tea... If you've not tried Redbush tea, its certainly has a distinctive taste and doesn't have any caffeine which I'm trying to cut down on (another reason for my headaches maybe). My usual tea intake per day is probably about 10-15 cups which is quite a bit so gonna try and switch to Redbush for part of that, and drink more water/juice

I'm also going to be having my first shower in just over 2 weeks... yeah I know I feel like a right minger! Last shower was on the morning of my op and then had to wait until the clips came out and scar was fully healed... I am sooo looking forward to it! It'll be on the bath board so won't be the same as a proper shower but its definitely the next best thing!

Rest of the day I'm not sure what I'll be up to.. see how I feel when I'm no longer minging hehe

If the sun comes out later then I'll have a sit in the garden.. maybe even have a pimms ;)

H x

Wednesday, 17 June 2009

Busting a Move!

Today has got a little better.... I've taken it easy and as frustrating as it has been , I've also relived a magical moment... the moment Diversity won Britain's Got Talent.

I first saw Diversity a couple of years back at a fashion show in Camberley. Their routines then were imaginative and breath taking so when I saw them audition for BGT I was chuffed to bits.

They were previously known as Swift Moves and became Diversity in 2007 when they merged with the younger members.

Their opening audition at BGT was inspired by a family friend, Sylvie Lewis, who sadly died from cancer in 2006.

After making their way through to the semi-finals they upped their game, including a cheeky telephone box scene with a 'vote for Diversity'

The final proved to be a jaw dropping performance, including a hilarious poke at the judges and made them winners of BGT 2009.

Since first seeing them in 2007, they have certainly grown in confidence in both their performance and ideas... and Mitchell doesn't need to keep pulling his trousers up ;)

I used to love dancing, and as a child was a regular at the Diamond Dance Centre in North Camp. Although I had to stop lessons with my arthritis throwing a tantrum, it didn't stop my passion so when I see the likes of Diversity win such prestigious recognition... my heart skips a beat!

Restless Ranting

Well I managed to have brekky... honey nut cornflakes & banana, and got myself dressed.

Feeling very restless today.. weather doesn't help as the sun has buggered off, replaced by rain and my joints are having a good old whinge!

I'm only 2 weeks post op and have another 4 weeks to go so I know I'm gonna have to come up with a plan of action to stop myself from climbing the walls.

The worst parts for me are lack of sleep as I need to sleep on my back and my body is thinking otherwise. The other is not being as active as I usually am... Not even allowed to push a vacuum cleaner around. I miss working, I miss earning money and it certainly adds towards making you feel useless.

Sooo what to do to turn it around.... well for starters I'll munch on a satsuma.. that always makes me feel better... :-)

The thing I need to concentrate on the most is my recovery... building muscles back up and from there everything else will slot into place... energy levels, mood etc...

Anyone else been in a similar dilemma?

Rheumatoid Arthritis Guy Nails It!!

I love having a read of other peoples blogs.. some are quite amusing and others are a definite eye-opener!

The next one I would describe as jaw dropping because in all my years of having arthritis, no-one has ever come close to describing it just how this guy does....

He goes by the name of Rheumatoid Arthritis Guy and has a 60-Second Guide To RA.....

Below is a taster... with the full version being available in PDF from his website

Okay, let’s pretend that your body is Gotham City. Your immune system
is Batman. Your joints? Well, they are tiny bat signals. Batman -
thinking that Gotham City is being invaded - is forever going to all the
bat signals and attacking everything in the vicinity, leaving behind lots of
damage. (He never seems to realize that these bat signals are actually
false alarms.)

No words can accurately describe the physical pain that is caused by
rheumatoid arthritis. (Although this mental image, for me, does come
close: A Mack truck ran over me. And then it backed up, and ran over me
again!) Rheumatoid arthritis pain is chronic and is not something that
can be easily fixed with just an aspirin. This pain can be one of the most
crippling aspects of living with RA.

Matchsticks Please!!

Awww I need some matchsticks this morning... had a fairly rough night. One of the things I have to do after having my hip replacement is sleep on my back for 6 weeks and its a nightmare!

I started off sleeping slightly sat up but had back ache. Then slept in the recliner chair but ended up with serious neck ache so have been trying the bed again. Its not been too bad but last couple of nights I have been turning over onto my side which has woken me up. Have tried putting pillows either side but my body is determined to turn over so I think I'm gonna have to try sitting up again or its back to the recliner!

If I was near the end of the 6 weeks I wouldn't be so worried but as I'm only 2 weeks post op it's a little scary as I could be damaging the replacement or even worse, it could dislocate. I certainly don't want dislocation as its not a case of popping the joint back in... it means another op!

So that's my morning whinge! Shall go in search of food and hopefully wake up a bit more...

Catch ya laters!

H x

Tuesday, 16 June 2009

Music 'n' Lyrics

OK.... so while I'm indulging in some tunes I thought I would share the playlist with you.... just so you can see how random my music taste is!

Snow Patrol - Run
Pussycat Dolls - Jai Ho
Kosheen - Damage
Prodigy - Invaders Must Die
Prodigy - Warrior's Dance
Katy Perry - Hot N Cold
The Verve - Bitter Sweet Symphony
Blancmange - Living On The Ceiling
Kosheen - Wish You Were Here
Massive Attack - Angel (2006 Digital Remaster)
Gabriella Cilmi - Sweet About Me
Simple Minds - Don't You (Forget About Me)
Sugababes - Girls
Doctor and The Medics - Spirit In The Sky
The Cult - She Sells Sanctuary
Prodigy - World's On Fire
The Saturdays - Up
Girls Aloud - Sound Of The Underground
Duran Duran - The Reflex
Faithless - God is a DJ

Sun, Snow Patrol & Squeals

The chicken fajitas were lush as always! Tried it with creme fraiche this time instead of sour cream and yum! Might try doing some lamb fajitas one day with creme fraiche & mint.. see how it turns out.

If you don't know by now, you'll soon learn that I love my food. I earnt the nickname Miss Piggy from my Nan... I would imagine human dustbin would also suffice hehe.

My mum used to be a chef before a scooter accident cut short her career. The saying that nothing beats a home cooked meal definitely applies to my mum. I love her cooking, especially when she does a roast or meatballs... and its fair to say that I share her passion in the kitchen (along with sampling the delights... chefs' priviledge!)

Anyway.... now that I'm suitably stuffed with fajitas, I am sat in the garden listening to a mixture of sounds..... Snow Patrol on the ipod.... blackbirds & sparrows twittering from the apple tree.... and kids squealing in delight as they finish school. We literally have a school playground at the bottom of our garden which is nice because we are not overlooked and sometimes its nice to sit and listen to the kids at playtime... running around without a care in the world. I find it quite relaxing, especially as sometimes I'm a big kid at heart!

Music has changed to Pussycat Dolls... Jai Ho... love this tune! Although noticed recently that instead of it being Pussycat Dolls, the focus is more on Nicole Scherzinger.... and while I know she is the lead singer, in the Jai Ho video it seems like the rest of the crew are backing dancers.

I so wanna get up and have a dance but I know full well with my hip the strength it is at the moment I will fall straight on my ass! lol

Oooh another good tune! Kosheen - Damage! Love it! The dark vocals of Sian Evans are just captivating! Oooh gawd.. I'm getting all deep here lmao!

Shall leave you to it while I go indulge in some more tunes..

H x

Cotton Wool Head

OK, so maybe I spoke too soon about the anaesthetic being out of my system cos I now have cotton wool head... Hubby reckons its just my blondeness coming back! Cheeky sod ;)

Head hurts right at the front and I could so easily kick back in the recliner and have 40 winks but I won't... Why? cos I'm stubborn plus its a gorgeous day outside and I don't wanna miss any of it.
On my 3rd cuppa tea of the day so that should make a difference although usually by now I've had at least 5.. I'm slacking!
So far my day has been kinda relaxing... had brekky, took meds including the disgusting aspirin, although it tastes better dissolved in lemonade or cream soda and then got dressed.
Todays attire is simple.... usual teal knee high stockings, not forgetting the peep toe bit, and a bottle green strapless dress.. just need a big summer hat for that bohemian look ;)

My cards arrived from and they are amusing! I set up an account with Moonpig a while back but since then have started to make my own cards. With Fathers Day, a Pearl Anniversary and Wedding coming up I decided I was going to give beautiful handmade cards.. except it didn't work out that way, I couldn't get the old grey matter focused and the days have slipped by.. So when I got an email from Moonpig reminding me I still had £19 in my account, the light bulb pinged on and I did the next best thing...

Quite chuffed with them and even though they don't beat a handmade card, they're certainly different!
So that's about it from me for now.. chicken in the oven... making fajitas later.. yum!
Bye for now..

Ying 'n' Yang

Morning all!

I've just had my first lie in, in gawd knows how long! It was soo nice, snuggled up in the quilt with the air con breezing over me.. talk about snug as a bug in a rug!

That's the thing I like about having the air con... when I close my eyes the noise of the louvres moving back and forward sounds like waves coming in on a beach.. and the feeling of the breeze against my cheeks... certainly helps you off to the land of nod!

So anyway, I felt refreshed this morning. Anaethestetic is finally out of my system and I'd had a proper natural sleep. Hubby popped up to help me with things and announced that I had a cuppa tea waiting for me downstairs... that our parrot had made it for me with a little help from him lol

Off I hobble down the stairs, doing the routine of holding on to the bannister, crutch down first followed by the operated leg, then good leg and noticing that I have a couple of toes poking out of my fashionable anti-embolism stockings. I feel so funky!!

It then dawns on me that I have a friends wedding this Saturday, and my stockings are definitely NOT going to go with the dress I have in mind.. Oh that's OK, I just won't wear them for that... but Hubby informs me that I will be wearing my stockings... that my health is more important than me looking good... BUGGER!

For those of you who've never had to wear these stockings... they're not bad if you're a funky kinda person.. or want to go for that school girl look... I've even worn them with shorts and looked quite trendy but usually you want to hide them under trousers.

They are knee high stockings with a peep toe... Teal in colour, so yes they're better than the white/flesh coloured ones they used to dish out, but teal is a colour more suited to wallpaper. I should know cos its the colour we have in our bedroom. Anyone would think I took my last pair to B&Q and had them colour match! Hmmm, maybe I did?... Who knows! I can't remember..

Anyway, I can't think of a single dress that they will go with. I can't wear trousers at the moment with swelling/scar and besides I want to wear a dress! Have been banned from doing any more shopping (mixture of not working at mo and needing 2 wardrobes & chest of drawers to house current collection in) so I'm in a bit of a dilemma as to what to wear...

Oh well, that dilemma will have to wait as I have another on my hands.... what to have for brekkie.. muesli and banana I think.. along with my 2nd cuppa tea..

Shall say bye for now.... no doubt I'll be back soon..x

Monday, 15 June 2009

First of many I hope...

Well I finally got round to signing up to one of these things... For many years I have kinda wanted to share my experiences as someone who not only enjoys writing but also as someone who has a long term medical condition. In my case its a condition called juvenile idiopathic arthritis, which basically means I was diagnosed with a childhood form of rheumatoid arthritis when I was 3 years old, and its affected a majority of my joints.

One place its not affected is my mouth as I have more rabbit than Sainsburys, but it has affected my vocal chords which means every so often I sound like I am on helium... hilarious to those around me!

The arthritis itself has been in remission since I was 12 thanks to a combination of drugs, Methotrexate (a form of chemotherapy) and Deflazacort (a form of steroid). Unfortunately, it was also an aggressive form of arthritis so the damage was done to my joints and I've had some of them replaced (cue Bionic Woman!!)

Latest one was 12 days ago, a total left hip replacement. It was a success and I had my clips taken out today which feels soooo good! Now starts the hard work... building the muscles back up...

So anyway that's it from me for now... no doubt I will pop back later... I'm guessing these blogs things kinda work from random thoughts... at least that's the way I'm gonna look at it so if I start going off on a tangent, slap me back down to earth!

Bye for now!

H x