Recently diagnosed

Hi there

How are you feeling? I found it really rotten but the best thing I did was avoid sugar like the plague. Every time I had sugar I felt worse and felt like I had this big sugary lining in my mouth. So disgusting. 

It is disappointing about the doctors when you put so much trust in them. It really has demonstrated to me how their training is so generalised. I have another rare condition that years and years ago was diagnosed by my then GP who worked like a bloodhound to find out what was wrong with me and didn't discount the rare things. I also have numerous heart conditions I've had since birth. My GP was shocked that a person like me that had been in and out of the "system" all her life could have this rare condition and no other medical practitioner picked it up. She actually said she was ashamed of her profession. I've never liked being the squeaky wheel, but I won't be going back to the one that diddled me around, I'll see the second one who immediately felt something was up. I'm so glad you persevered too and found out your diagnosis. 

Look forward to hearing how you got on with chemo when you're up to it.

x