Gastroparesis and Ehlers-Danlos Syndrome

I have not been writing much, in fact I haven't been doing much of anything lately... you know when I start writing poems...its not going well lol. I have been having a mini war with myself over medication and just generally sulking about the whole situation! At my last consultation we decided to remove my nj tube after starting on TPN in the hope that I wouldn't need them now that I'm not using my digestive system for feeding. It didn't take long to realise that I really needed some of those meds but by then it was too late and the tube was gone. So I have spent weeks trying to cope, simply because I didn't want the dreaded tube back! Really all I needed to do was make a phone call or send an email but I wasn't giving in and wanted to make it work. That was pretty dumb and I should have known better but I never learn. I do everything the hard way so why would this be any different lol. So, of course by taking that approach, I just made everything worse for

We have recently launched our new blog! If you haven't seen it yet take a look at  www.giftukblog.blogspot.com  and see what we have been up to! We are just starting out so don't have a great deal of funding but soon hope to get our website off the ground to provide a more interactive platform. In the mean time, I hope you like it....show your support and subscribe, tweet, 'like' and share our page! You can also visit our support group at  www.facebook.com/groups/GIFTuk  for patient led advice and support.