11th July 2018

Hi All,

Hope you are all keeping well sorry it has been a while but have had to concentrate on doing my presentation and have now registered a business name so has been extremely busy.

Well I have had great feedback on my presentation and wanted to thank General Hospital for allowing me to give a talk about my health conditions.  I had some great questions and let’s hope I can do this again.  It is important for me to highlight these diseases from a patient’s point of view.  Also, that each of us have our own story to tell and journey we have been on.

I am now able to concentrate on building a website, so I can sell my cards and other craft items in hope to bring a little income in.  I have been unsuccessful in finding a work from home job even though I have sent me cv and letters.  Thank you to the companies who had the courtesy to reply to me.

I have since see the pain clinic and I am due to do the pain induction day next week.  I have had stockings fitted for the lymphedema which is helping with the swelling and the cellulitis. 

I have had to use the Cyclo-ssage recently as my back went again.  I use it for a 15-minute treatment and it does help.  I am also finding the CrainoSacral Therapy is helping a little.  I am doing a bit more than I used to.  I have had a bad couple of days on occasion where it feels like someone has hit my legs all night and they feel so bruised I am sure that is the Dercums.

I have really had to have a good talk to myself on those days as even hoping to the kitchen is a chore but know I have to move little and often.

The Behcets as it is summer is manageable hands are not as swollen (not sure if everyone has this).  The Addison’s I really thought I was going today felt faint briefly and almost like I had one too many.  I have craved salt like it’s going out of fashion. Since doing my research for the presentation I am now understanding more.  If anyone would like a copy of the presentation, please email me (it is in a word document).  I can print it and send it to you or send this by email. 

Well again sorry for the delay.  I am hoping now I can start on the vibration plate in the next few days and will keep everyone posted on this.  I am hoping it will help with the Dercums (fingers crossed).

Motto: Try to be kind to everyone you never know their circumstances.