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Look... An Update... Finally!

Hello everyone.  I hope that 2013 is treating you well so far.  Some bullet points I think this time.  

- Christmas went down very well.  We had myself, Em, her parents, my mum and her brother over for the day.  Em made a christmas cake herself, it smelled really great and I hope we get to try a GF/DF version next time as well.  The cats chewed on the tree and we had to leave the bottom 1/3 of the tree bare so that we wouldn't have a repeat of the cat pooping tinsel from previous years.  

- I have my appointment with the dietitian tomorrow and hopefully will get some input about going on the Low FODMAP diet.  This was recommended by my Neurogastroenterologist from St Barts in London.  It's very restrictive for the first 8 weeks as that is the elimination part of it, but then you can slowly add things back in to see if they react.  If they do then you take them back out.  I know that gluten and dairy I react to already so I've taken those out.  

- I now have the date for hopefully what is the last stage of my chest surgery.  It will be on the 20th February at Cheltenham General Hospital.  I have a pre-op appointment that I have to go to on the 8th February.  I'm still waiting to hear back from the hospital as to whether I need to come off the Florinef or not before the surgery, on the information leaflet it says if you have been on it for more than 3 weeks you have to taper it down.  So if I need to come off it then I have to do it pretty soon.  I had a look at the pictures of the pre-op before the first surgery, I forgot how big my chest was before!

- I've now been on the Florinef for a few months and I've gone down from having fairly regular faints to rarely having any.  I still get pre-syncope and tachycardia (resting heart rate very rarely goes below 110 BPM).  I talked to my GP about perhaps getting the dosage increased but she is hesitant to do so as it has increased my blood pressure higher than she would like.  I have a follow up appointment at the hospital in July but that is a long way off.  I'm not sure what can be done about the tachycardia really.  

- I finished the 50 book challenge last year with a total of 69 books.  I'm sure there are some that I missed when I wasn't tracking particularly well at the beginning of the year so have probably read more along the lines of 70-80.  I'll start with a target of 50 this year and then will revise upwards if need be.  

- I am still working on the weightloss but I was rather hesitant to write on here about it as I have tried and failed so many times before.  That being said I managed to lose 12lbs over December.  Pretty good going all things considered! My target is to lose another 7-14lbs before my chest surgery in February.  My ultimate goal is to get to around 140lbs and then reassess if necessary.  I haven't been that weight since I was about 16.  

- I really must not buy any more clothes! I now have enough clothes to last me the next few sizes down.  I had a clear out and there is a big bag of clothes going to the charity shop.  Hopefully someone will get some use out of them and raise some money for charity too.  

- We are still waiting on the date for our kitchen to be done.  I'm hoping that they are going to be telling us the date soon.  I think it is going to be sometime during February which will mean that month is rather stressful with the kitchen being pulled apart, people in and out of the flat.  Plus having surgery in the same month.  I can't wait for it to be done though, will be able to start doing some cooking again (with some help with things like chopping).  That'll be really exciting.  I will have to look through my cook books and try some of the recipes, I have a few books that will be helpful cooking GF/DF and Low FODMAP.  

- Our livingroom has been re-arranged in preparation for the work.  It looks really good now.  We got ourselves a new tv unit, bookshelf and a few other little bits and bobs.  This place is starting to become more homely slowly, once the kitchen is done we can decorate. We're rather fed up with having the whole flat magnolia! Still haven't decided on a colour scheme for the livingroom yet so we better get a move on and make a decision.  The people fitting the kitchen will paint it the colour we choose if we provide the paint so we will do that and it will save us having to paint it.  Will put up pictures when it is all done :D

- I'm sure some of you will have heard about the Dr Curtis story by now. I think that is best left for a separate entry.   

I think that's everything that is going on at the moment, or can think of at least :P

A Long Hard Day in London....

Yesterday morning we had to get up about 3:30am to get the university in time for our 4:45am megabus to London. The journey on the megabus itself was pretty uneventful, even though we left so early we only just about made it in time to the wingate institute for my 9:30 appointment. 

I was at the wingate institute for a gastric emptying test which is not difficult just incredibly boring. You have to eat an egg sandwich that contains a marker which shows up in breath and so I had to blow into a bag every 15mins for 4hrs. I played a lot of bejeweled between blowing in bags. 

After the gastric emptying testing we had to go over to the new royal london hospital. It is very shiney! Rather confusing and easily lost in there though, the signs go so far then just disappear. 

The next round of testing was certainly more than "uncomfortable" which is what it said on the leaflet. The first test the oesophageal manometry was horrible, they put a tube down the nose that goes down the throat. I have a hypersensitive gag reflex so this test was very difficult for me. They were testing my swallowing and I had to swallow lots of water and then some biscuit. The numbing spray they used didn't do a whole lot for me so they had to use a fair bit but even then it wore off after a few minutes. 

The second test was to put a different tube down my nose and throat which was to measure the reflux over 24hrs. They said that it would calm down after a while and I wouldn't notice it. We left the new royal london hospital and decided that getting the megabus back wasn't such a good idea and I'm glad that Em brought up the idea of getting the train. The journey from whitechapel to paddington took us about 2.5hrs, that's longer than it took to travel across the country. On the bus the tube was constantly moving and I was gagging on it and trying really hard not to throw up. 

When we got to paddington finally we were lucky that the train wasn't too expensive and the assistance people were really great about us turning up at last minute. The train from london was ok except I had to finally give up and take the NG tube out because it was so painful and made me feel so ill, I really wanted to leave it in but I just couldn't. I had fought to keep it in for 4hrs and I just had no energy left in me to keep on going, it was just too much. 

We finally got back to Bristol Parkway just before 10pm. It was freezing out and we thought great only 15mins until the bus comes so we could go to UWE pick the car up and go home. The bus didn't turn up, I had to ring the bus company to find out why and they said that it had broken down and that we had to wait for the next bus at 11:05 at this point we were just too tired and cold to hang around. We could have got on another bus except the bus company had sent around 2 inaccessible buses in a row! The bus company that had a wheelchair symbol on it's timetable indicating that they were supposed to be wheelchair accessible! In the end I rang the bus company back and told them I would get a cab and charge them for it. 

We got home at about 11pm so we had been out for 19hrs. All in all it was a pretty rubbish day and one I do not wish to repeat any time soon. I shall be writing letters of complaint to both bus companies.

Pat's Petition and welfare reform bill

The welfare reform bill will be passing back to the house of commons from the house of lords tomorrow and it is highly likely that the coalition government are going to try to reverse the few changes that were managed by the house of lords.  Amendments such as making contributory ESA (WRAG) available only for one year being extended to 2 years instead.  Overall it is still a very bad bill.  

Pat Onions has a petition up on the government e-petition site and so far there are nearly 27,000 signatures.  We need a lot more than that for them to take any notice of it.  I am ashamed to live in a country that is so big yet we can only manage so few signatures for what will be effecting so many people.  This is not just about disabled people it's the working poor, families, elderly people, the government is taking away from everybody and trying to divide us by getting us to squabble about our one section.  We need to join forces, we don't have much time to do something about this.  So please could you sign this petition and pass it on to as many people as you know, the more people we can get to sign the better.  

Many thanks in advance.  

Stanmore Rehab/Pain Management Course

On the 6th February I will be going away for 2-3 weeks to the Royal National Orthopaedic Hospital in Stanmore for a rehab/pain management course.  This is a rather intensive course and I will be taking my blackberry playbook with me, I'm not entirely sure what the signal will be like so I may or may not be able to post while I am away.  If I am unable to post while I'm away I will draft up posts and then post them at the weekends when I am at home.  I will be posting this both to livejournal and my blog so that people who are interested will be able to read how this course goes.  The course itself is highly recommended by the people that I know that have already been, so I'm hoping for good results from it, I know it isn't a cure as no such thing exists but if it can make me more functional then I will be happy with that.  I will be staying at least 2 weeks but possibly a third week depending on progress.  Really hoping it will go well as I've just been trying to hold myself together until then.  

Google thinks I'm a middle aged woman.

Following on from a few people posting about the Google Ads and preferences I looked mine up and here are the results.  I found them rather amusing to say the least 

Your categories
Below you can review the interests and inferred demographics that Google has associated with your cookie. You can remove or edit these at any time.
Beauty & Fitness - Fitness
Computers & Electronics - Software - Software Utilities
Finance - Insurance
Food & Drink - Cooking & Recipes
Games - Roleplaying Games
Internet & Telecom - Service Providers - Phone Service Providers
People & Society - Family & Relationships - Family - Ancestry & Genealogy

Your demographics
We infer your age and gender based on the websites you've visited. You can remove or edit these at any time.
Age: 35-44
Gender: Female

What is going on with me...

I'm going to try to make sure that this post doesn't go on too long.  I realise it has been a long time since I have updated you all on how things are going.  I do however read all your posts even if I do not always reply to them.  I have upgraded my account back to paid with extra userpics so I'm all ready to go again.  I can't believe it has been a year already. 

2011 RecapCollapse )

2012 brings:

- A 2-3 week stay at Stanmore for the Rehab/Pain management programme
- My 3rd and final year in my undergraduate course
- My mum possibly moving over to Bristol to help us out and be closer to us.
emsyhaving her 30th birthday and hopefully losing enough weight to get the ball rolling on starting to try for a baby.  At least getting on the waiting list for the fertility clinic at the least.
- May is 4 years since we got married and September 9 years we have been together
- Possible lower surgery or the last stage of my top surgery still undecided which I want to go for this year (takes me longer to recover so aim to only have 1 surgery per year).  
- In March my 6th year on hormones, how time flies!
- Bilbo's 6th birthday and Pippin's 5th.  
- 4 years living in Bristol!
- Finally the year that I get to a healthy BMI for the first time since I was 17.  About another 3 and a bit stone to go, but have already lost about 41lbs so far so have come a long way already :)

So it's not all doom and gloom! Feel like I am taking some control over my own future and it feels pretty good.  There will be setbacks along the way but I finally want to take control of my disability and make the most of life and learn that sometimes it's ok to need to rest up and not to be so hard on myself if I can't do things on some days.  

Direct Payments?

I had a meeting with my social worker this morning about my support. I was given several options as to how we go forward from here.

Option 1 - Continue with the NAS and give them some more time to get their shizzle together. Problem with this option is they have a high turnover of staff, their training quite frankly sucks, they arent very flexible and the kind of support i need is mostly not in their remit.

Option 2 - Continue with the NAS and top up support with second step. Second step another organisation that isnt particularly reliable.

Option 3 - Employ someone myself with direct payments. I dont know a whole lot about how that works but it seems like the better option. As my needs are rather varied they dont really come under the remit of the NAS or Second Step.

What I need is someone to help around the house, to support me with appointments like drs, CAB etc, help shopping, cooking and so on.

Any guidance any of you could give me would be fantastic. Told social worker I would think through my options and get back to her.


just testing app on my new phone. hope that this posts ok. will write a proper post sometime soon.



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January 2013


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