Gastroparesis and Ehlers-Danlos Syndrome

Tuesday 28th October 2011 Ok now back to the future guys, got to keep strong and live for the living. I am still in a sense of total despair but I can't afford to loose my head now. I have a family to think about and that's all that keeps me going these days. Yesterday was my pre-assessment for my surgery. It brought it home to me just how much I need to get on top of things. For those of you who are new to the page, I am having  a surgical jejunostomy (feeding tube), full thickness biopsies and a gastric neurostimulator. You can view information about the device at:  www.medtronic.com/health-consumers/gastroparesis/device/index.htm . The surgery is scheduled for this Friday (21st oct). My appointment went as expected, there were lots of questions about my general health, body weight, height, blood pressure etc and a blood test. I didn't need an ECG this time, as I had a cardiac echo in June this year. The nurse was lovely and again, genuinely interested in my condit

Wednesday 12th October 2011 So far this week I've managed to stay away from doctors and hospitals... an achievement in itself these days. I have just about managed to balance myself out enough to do what needs to be done. It dawned on me this weekend that I did not have anything smart to wear to the funeral, all my clothes are far too big for me these days. So my mum and I went out to try and find something that fits. Surprisingly I managed to find the perfect dress in the first shop we went to...how often does that happen? So thankfully I didn't have to expend as much energy as expected. Although it has been a struggle to get through this last few days, I feel that grandad is there making sure it all goes well. Tomorrow is the day of the funeral and I have GOT to keep going for that, I am just hoping that life is kind for a change and allows me just one pain free day. I am resting today in the hope that I will be able to stand up for all the necessary parts of the service

The following journal entries are from my written journal. I keep one when I'm too ill or tired to use the computer. Those of you who follow my diary will understand my current situation and I just hope you can bear with me through this roller coaster ride I'm getting right now. I hope to get back to my usual chirpy self some time soon but for now...things are going from bad to worse. Thursday 6th October 2011 Following my recent bereavement, my own health has decided to take a nose dive too. By Monday morning I was getting the palpitations and nausea in a big way. My hubby dragged me to the doctors and she was not too pleased with my overall condition. She rang through to my consultant in Durham who arranged for me to be admitted the next day, after my botox injections (which were scheduled for Tuesday anyway). So... here I am again, the last place you want to be following a bereavement. I know I need some rest now as my weight has plummeted from 46.3kg to 42.5kg today.