Well hello!
Long time, no blog! I found my blog by accident and decided I would pick up where I left off. The reasons for abandoning it were mainly due to now running a business, which I'll tell you about shortly and the fact things have been so monotonous, I haven't had much to update. However, this post I shall do my utmost to bring you up to date with my current life.
My last post was at the end of 2012 following another hospital admission due to severe jejunostomy pain and dehydration, it was only a week or two after coming home I was straight back in and had the delights of another week on the gastrointestinal ward including my birthday. Lucky lucky me. I got home just in time for Christmas, spent the day in bed - which is pretty much exactly what I did for the next few months. I was totally housebound from December to March and could barely get out of bed or sit up, my muscles became so wasted that everything was a struggle and quite frankly I turned into a despondent misery!
In March 2013, everything changed. I decided to get a pet for company and settled on guinea pigs. I actually went out of the house, the first time in months to collect them (only a couple of miles away by car) and slowly built my strength up enough to sit in the lounge with them. As a result of this, I began sewing tunnels and toys for them which it turned out, I wasn't half bad at. So, just for a bit of pocket money I put a few items I made on Ebay. They all sold in the first day so I began making more and more then 'Ziggy's Piggies' Pet furniture was born. A year on, and many thousands of orders later, I cannot believe the success. I work from home and rest when I can, making it the perfect job for me and best of all, I love it! Plus I'm now financially independant!
It hasn't all been plain sailing however. The ongoing problems with my J tube have continued and it has now been infected for more than 2 years and total agony. i saw my nutritional nurse in January who stated the tube needs replacing ASAP - there's only a few cm left inside me and the granulation tissue is excessive. It's now the end of March and I'm still living with my manky tube (no surprise there) I have an appointment with the surgeon who inserted the tube (and will consequently doing the switch) on the 8th April so I'm hoping not to have to wait too much longer after that, but I'm not holding my breath! I also have a very long awaited appointment with the Pain Clinic at the beginning of May and I'm hoping it can lead to me getting at least some of my intestinal/stomach and joint pain under control. I'm currently relying on Solpadol, Tramadol and Ibuprofen which to be honest, aren't doing a busting lot. The pain continues to be very restrictive and I now use my wheelchair full time when outside, which isn't very often - perhaps once every couple of months or less at the moment.
My weight has dropped again, albeit very slowly, due to feed intolerance, despite switching to elemental feed and my BMI is now 15.4kg/m2 which is less than great and back down to my pre tube weight. I'm not sure if it's down to malnutrition but I've been getting very dizzy due to low blood pressure and on many occasions during the day am feeling my heart flutter and race. Perhaps my latest bloods will throw some light on that and it can be remedied quickly.
The biggest news, keeping with the subject of appointments is that after 6 years, I finally have an appointment with Prof Epstein at The Royal Free in London. I've heard great things about him and his team so keeping my fingers crossed for my meeting with him in June. I'm not entirely sure what suggestions, if any, he will make but am trying to keep as open a mind as possible; although having been fobbed off as many times as I have, that's not the easiest thing to do in such circumstances!
I think, in a nutshell, that's the current lay of the land so from here on, hopefully I can be more extensive in my posts and have good news to share!
All my love and thank you so much for reading xx
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