So a lot has happened since my last blog post, I’ve been up and down to Dublin like a yo-yo! Let’s start at the beginning on the 26th of November I was in the Beacon hospital for the procedure on my spine. Firstly it wasn’t what I thought I was getting, for the medical professionals reading this I had a cervical/thoracic facet rhyzolysis, for everyone else basically I had anaesthetic, steroids and pain medication put into the joints on either side of my vertebrae from the top of my neck down to below my bra strap. Sounds fun doesn’t it?? I was so scared that the sedation wouldn’t work when I was going into the procedure because people with EDS tend to have problems with anaesthetics and it has been a problem for me in the past but thank goodness I had a great anaesthesiologist who reassured me I would be fine and I was!! I woke up in the recovery room with no memory of anything I was so relieved. I was supposed to be allowed home after a couple of hours but unfortunately I wasn’t too well and they didn’t allow me to go home until 9 o’clock and at that they were reluctant to let me home but I kind of gave them no choice, I just wanted my own bed. The car on the way home was pure hell for me and mum, we had to stop 5 times for me to be sick out the car on the side of the road, you can imagine the pain that caused in my back :O gah!!
Anyway enough of that…… I had a pretty tough recovery for the first week! The pain was intense!!!! I was told if it had worked I would feel a difference in the first week to ten days. I felt no difference in most of my back except my left shoulder blade which had improved!
I went back to the pain specialist two weeks after and he thinks he will go ahead and perform the next procedure to sever the nerves in January but I will see him again before he decides. In the meantime he has put me on some heavy duty drugs!!! Firstly a sleeping tablet because the pain was keeping me up at night. Secondly a muscle relaxer three times a day to try and calm some of the spasm and pain in my back and thirdly the big guy………Morphine! Yep if I wasn’t a druggie already I am now!! Thankfully the tablets are helping but of course they have side effects too, I can look pretty stoned throughout the day which I don’t like but right now I don’t have an alternative so I’ll have to put up with that!! The downside for my family is morphine makes me a yapper, one day I literally followed mum around the house while she was doing house work spouting random s**t, god love her she puts up with enough without that!!!
So on to the next doctor…..my gastroenterologist! I have been having serious tummy/bowel issues I won’t go into it too much because really you don’t want to know but let’s just say if you saw me up town you would think I was 9 months pregnant, my jeans didn’t fit, I had to wear leggings!! Majorly embarrassing!! I was also throwing up a lot! The long and short it is I have Gastroparesis and bowel dysmotility, yep something else no one has heard of! Woo hoo!! It was caused by my EDS, surprise surprise…. So basically it means there is a partial paralysis of my stomach and food doesn’t move through it at a normal rate, the vagus nerve controls the contractions of the stomach and we already know that my vagus nerve is damaged from the POTS and NCS. So I have been started on a drug called Resolor to improve my motility and also have to take laxatives everyday along with a drug I was already on to help nausea and vomiting. Hopefully this will help as some people with gastroparesis end up with feeding tubes and i really don’t want that!!
Phew think thats all the medical updates, now for a positive bit of info 🙂 my family go skiing every year around christmas time and we weren’t sure if we would be able to go this year because of me but we took the plunge and we’re going on the 9th of january!! YAY!!! I can’t wait! Obviously skiing won’t be on the cards for me but it will just be nice to get away with the family. So fingers crossed I have no setbacks between now and then and everything will go smoothly. I’m also looking forward to christmas some of my family are coming down and my sister is home from Edinburgh so it will be nice to have everyone together. I have a wedding on the 28th of December too which I can’t wait for, one of my close friends from college, it’s going to be a bit of a trek as it’s in Donegal and then the reception is in Sligo but I wouldn’t miss it for the world!! Thankfully my bestie Orla is taking me and with plenty of naps I’m sure we’ll manage just fine, there may be some down time after it but life goes on and I have to make the most of it and there is just somethings that I refuse to miss out on, even if the payback will be bad!
So fingers crossed for a stress free, pain free happy festive period…. that may be too much to ask for but a girl can wish right??
Happy Christmas to everyone and thanks so much for following my blog and for all the lovely comments, feel free to share far and wide.