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 ;)