Gastroparesis and Ehlers-Danlos Syndrome

Oh my goodness! Where do I start to explain my crazy roller coaster ride? Quite honestly, my head is still not quite in this world but I'm getting there slowly but surely. It's been three weeks since I came in for my "minor" surgery and I have only just started to turn the corner. My physician came to see me shortly after my last post and we finally discovered what has been making me so ill. She didn't want to dismiss the possibility that there was something sinister going on  since my blood tests indicated that something was going on with my liver. So, I headed off to ultrasound to get everything checked over again. Usually this is a safe and painless test, however, when you have just had surgery....it's is definitely NOT painless or easy at all! Even laying flat on the bed was torture, never mind having someone rubbing and pressing on my surgical wounds! She must have checked just about every organ while I was there, from my liver and kidneys to my sple...

I'm not up to writing a long post right now but I wanted to update everyone because my inbox is full lol. I had surgery last Wednesday (17th) to have my gallbladder &pacemaker removed and to get a new jejunostomy tube for my medication. I was supposed to be here for 2 days but as you can tell, I'm still here 11 days later with no sign of being anywhere near ready to go home. The surgery itself went ok and a subsequent CT scan confirmed that structurally everything is ok. However, since the surgery I have been vomiting. Not just a little, I'm talking anything up to 3 litres in 24 hrs. They have no idea why this has happened or how to make it stop. I'm on 3 different types of anti-sickness meds yet it just won't stop. Sleep is becoming a big issue as I'm up most of the night with it. Of course lack of sleep with the added nausea and vomiting have put me on a real downer. they are finding it hard to get enough fluid in to maintain hydration because my TP...

Hi guys, Just a quick post to update you on the progress of the Gastroparesis charity I started. Many of my Facebook and twitter followers get regular updates on what we have been doing but for those new to the page here's where to find us and how you can help. The charity is called GIFT standing for : Gastroparesis &Intestinal Failure Trust You can find us at:  www.giftukblog.blogspot.com  please take a look at our fundraising page where you can earn crucial donations for GIFT without it costing you a penny extra by registering with Easyfundraising (direct link available). The support group currently runs through Facebook and can be found at:  www.facebook.com/groups/giftuk And finally our awareness campaign can be found at:  www.facebook.com/giftuk We have had some excellent feedback from our existing group members and hope to expand the support network over the coming year. We are currently building a database of members and invite anyone in the U...

Time for an update I think! I worry that my blog sometimes sounds really repetitive, not much changes around here I'm afraid so more of the usual coming your way!  The problem with not updating regularly is, that I can't always remember everything thats been happening. My memory is shocking and after 3 years of this and all my appointments etc kind of blur into one these days.  If I'm honest, I feel low. I can't put it down to one thing thats making me feel like this, I just feel completely overwhelmed by everything. Not just health issues but life in general can be a bit of a challenge sometimes. Being ill just complicates things further. There are times in your life when you need to be on top form so you can be strong for others, and that's just how it should be, yet I feel like I'm failing my family because I just can't deal with any more!  I won't bore you with the details of life's craptastic twists and turns but someone put a go...

I don't claim to be a writer by any stretch of the imagination,  but I do have writers block! Maybe it's not a lack of something to say but rather...I'm sick of the subject. I feel like I've come to a bit of a road block and I'm swinging from not wanting to talk about it anymore to wishing I could. I'm not saying I don't have support, I do! I have a great family and a truly amazing best friend, not to mention all the friends I've made through here! However, sometimes those are the people I least want to speak to. Not because I can't...I simply don't want to. It's kind of hard to explain hence "writers block". The only way I can explain it that makes any sense is to compare it to the kitchen bin...don't laugh, I've been thinking about how I can put this into words for ages. Yup...the kitchen bin was the best by far ha ha. Anyhow, if your house is anything like mine then you will know what I'm talking about! The wa...

I haven't been posting regularly for a while and keep apologising for the lack of activity here.... Im not apologising for anything anymore. Life is a roller coaster and that's that lol. One of the top ten questions I get from people about my condition, is, "How do you cope with that?" until recently I have found this question near on impossible to answer. What do you mean? I'm not coping, I'm not dealing with it and I just want a way out. I never understood the question... I just wake up everyday and put one foot in front of the other...sometimes I walk and sometimes I fall. That's just the way it is. I have no choice in the matter really. So COPING never really entered my head. However, the last couple of months have been a turning point for me. My last clinic appointment left me in tears and all kinds of emotional torment. I was told that I would probably be on TPN for the rest of my life... wowzer, I had never dared to think like that before. No...

G.I.F.T: Do you write poems? : Hi everyone! After receiving great feedback on facebook about poems, I thought it would be a great idea to get everyone to send in their ...