Support Dog

http://www.dailymail.co.uk/health/article-2097649/Byron-dog-makes-bed-fetches-milk-gets-money-cash-machine-disabled-owner.html

well worth a look :)

Help!!!!

I am applying for higher rate mobility I already receive the care component. I was looking through my medical letters for a doctor’s address and noticed that a lot of the medical reports contradict each other. One says I have begin hypermobilty another says I have severe EDS type 3. Another said I scored 3/9 on the beighton score and another says I scored 8/9.

One letter says I have POTS another says I get slightly flustered. One even says I have drug seeking behaviour (like it hasn’t been mentioned before lol) 

One letter says I have never dislocated (I wish) and another says I dislocate daily. One says I’m left handed while I’m actually right handed.

I was wondering is there a way that I can get a letter that is correct. No wonder I’m struggling to get any help let alone get my head round what’s going on. I would ask my specialist but I am not due to see him till god knows when. I phoned for appointment waiting time and was told I’m looking at 11 months for an emergency appointment. Do you think it would be a good idea to email him? I just need a definite letter to be able to claim right. With the letters at the moment the government are refusing to issue a bus pass because there’s so many contradictions, any ideas what I can do?

Hellooooo. It’s been ages I know. I have been mainly on my cross stitch blog. I’m a bad blogger.


In all honesty it’s been a shite few months but I’m not in the mood to go into all that now.



I’m still waiting for my tilt table and overnight tests. Most of the waiting has flown by so I’m expecting a letter any day now.

I have been keeping busy with Connor mainly doing arty things. We have made a paper mache pig. It’s been so much fun. Slow progress but fun. Hopefully tomorrow we will be able to start painting it! It’s been nice to have something I can sit down and do with my son. It makes the painful days pass quicker. So here is Mr Piggy. Connor named him, not bad for a 3 yr old. I wanted to call him pizza or chicken head but Connor wasn’t having any of it!



Mr Piggy

Connor glueing his hands

Mr Piggy ready for painting

We also did some hand painting in the garden. Which somehow turned into a paint fight? Soon there was paint everywhere. All over the garden all round the house. I stood there in the middle of it all and thought I really shouldn’t have worn my brand new white shorts!



Some of the paintings

We gave the shed a make over

The expression “when you hear hoof beats expect zebras”(( INFO)) is very well known in the EDS community. We even have our own ribbon which has zebra stripes!



The other week while we were food shopping I found these in Tesco’s. I fell in love with them. All three for roughly £5-6

Not all Drs are monsters!!!!

Well it’s been a month. I’m sorry.


Last week I had an appointment in London to see a professor in neurology. For once we were on time! He thinks I have secondary P.O.T.S and has asked me to come back before the end of the year for more overnight tests and a tilt table test. Information on P.O.T.S can be found HERE and information on the tilt table test can be found HERE. I’m sorry that they are taken from the internet but at the moment I’m having problems understanding it all and keep getting confused.

The professor was amazing. Funny, talkative, interested in everything not just my medical history but what I enjoy doing, what past jobs I’ve had, everything. I can’t wait to go back and see him. I would even go as far as to say he has restored my faith in doctors.