5th November 2017

Hi All,

Hope you are all keeping well.  

So much has happened since my last update.  Where do I start...?

Well I have started my oral surgery finally getting the teeth sorted out.  Only I now all the top-set of my teeth removed.  I had four removed on 18th October but think it was too much in one go.  I am terrified of the dentist and my body didn't cope very well at all.  The pain in my whole body for the next week was awful.  I even ended up with an x-ray on my left ankle and leg.  Thankfully it was all clear. My next appointment is in 3 weeks where another three are to be removed.  Wish me luck might just need it.

I have also decided that laser eye surgery is something I would like to do.  Now that I have reading glasses along with the distance.  Trying to do my art work or any reading is a nightmare and last lot of glasses cost me £800.  I will keep everyone updated on this too.  Again, I am nervous but I would be lovely not to wear glasses for the first time since I was 13 years old.  Hopefully a new me with new teeth and no glasses.

I have been busy crafting making my French knitting.  I have tried to find a work from home job but with no success as yet.  I will keep looking and again will keep everyone posted if I do find something.  It's quite frustrating as the brain is working well just sometimes the body doesn't.  Being able to work from home would give me some purpose.

I am going to try to sell my home-made cards and other things at a car boot sale at the Fort so look out for me if you do pop in.  It would be great to meet people.  This is the only car boot sale I could do as it's disabled friendly I will be using my big wheelchair.  

I am also going to see Professor Mortimer in London soon.  There is so much I do not know about Dercums and it is not being managed over here.  I really need to know how big the inflammation is going to get and how to manage it.  The pain is also quite bad but think it's because of the oral surgery.  

Not knowing which condition is going to flare up is a nightmare.  It seems (fingers crossed) that the Behcet's is being managed although I do get pain from this.  I am still not sure what the internal quakes are.  My MRI scan was clear so at least it's not the head causing it.  The Addison's is a funny one....  I seem to some days eat salt.  Yes! That's right eat salt out of the palm of my hand, apparently this happens salt is a replacement for steroids and I crave for it.  I do at times go really tanned on the hands and feet.  I also seem to hit a brick-wall of tiredness and have brain fog.  I must lay down then and rest.  Learning to read the signs is just something I am still learning.   

The most part I take each day as it is.  It is hard it means planning things is a no go.  The hardest thing is not being able to dance when listening to music.  I loved to dance and that is one of the things I miss greatly.  I encourage everyone who can enjoy the little things because you never know when it will stop.  

Well I will update everyone on London and how the oral surgery goes.  

Motto: Enjoy each other and never take for granted what you already have.