20th April 2016

Hi All,

I hope everyone is keeping well.

I have unfortunately been a little ill so sorry for not being able to update anyone.  Tomorrow is my next oral surgery procedure so trying to catch up on things.

Hopefully now the weather is improving my health will slightly improve and enable me to set up meetings if anyone is interested.  Please do contact me if you would prefer one to one or a group setting so I can have an idea who would be interested.  I am also hoping to buy a disabled car and this hopefully will enable me to meet people who are unable to leave their home.

As I have said my health has limited in what I can do.  Very frustrating especially as I think I can do things and the body says no way.  IBS is to the point of no control even on daily Imodium, I am finding this hard to cope with more than the pain.  It is extremely embarrassing not being able to control that side of things.  Yes I know everyone does it but I still find it hard to cope with.  

The Addisons I am not sure what it happening?  I crave salt and have had very tanned hands, forehead and feet.  I have had bouts where I just want to lay down suddenly and sleep and my BP is all over the place ranging from 90/60 to 140/90.  

The good news is that the Behcets on one of my latest blood tests apparently shows a slight decrease in the inflammation in the blood.  If I can at least tackle one condition hopefully I can concentrate on the others.  Although my hands are at times extremely painful and swollen.

The Dercums is another one which is causing me some pain.  The lump on the back of the neck is larger.  I do wonder how much more it is going to grow and what pressure it is causing internally if is this big on the outside what is it doing on the inside.  

New thing happening is these inner quakes I am not shaking on the outside just feels like the inside.  Also at times the floor is moving as if I am on a boat.  This totally annoying itch which feels like ants crawling over my skin on my left foot.  I did last year have this on my right leg which spread.  No rash just an itch that you need to get to no matter what.  No sure if it's all related or not.

I am not sure if anyone has heard of this but I have been told that I could have diverticulitis also.  Does anyone else have this?  Gosh if that is the case then no wonder why my tummy is the way it is.  Nothing better to break awkward silence than breaking wind, and quite frustrating when you can't run to the toilet I do my best pirate hop to the toilet.

I do think keeping a sense of humour is what keeps me going.  I do get asked gosh you must get depressed.  My answer is no at times I feel frustrated but try to think it could be a whole lot worse and we are strong in ways that other people will never know or appreciate at times.

I do hope everyone as well as they can be and look forward to meeting up and supporting each other.  As there is such a wide range of autoimmune diseases I think it would be good to include these to the support group, what does everyone think?  

Motto: Keep smiling even on the darkest days