Ok so I have been dreading writing this blog post, the last month has been one of my worst ever and didn’t want to write a really depressing post on how crap I’ve been feeling but decided to give it a go.
Firstly I’ll give you a quick update on all my medical appointments, I went to see a gastroenterologist and she ordered a load of tests and I was brought in two days later to get them all done, I had a OGD performed which is a camera down the throat basically. For people with EDS sometimes anaesthetics don’t work but I didn’t think I had an issue with it so wasn’t worried going in. unfortunately for me the sedation had zero effect on me so I was wide awake throughout. The whole thing was a bit of a nightmare, TMI alert, I was vomiting throughout and ended up with matted hair with dried in vomit which was lovely, it was also extremely painful which I wasn’t expecting. The next day I had two large marks on either side of my throat and it came out in ulcers, when I told my Doc this she was quite surprised apparently it’s not a normal response but then again I’m not normal am I. Any who long story short I have gastritis, all my biopsy’s were ok they had some abnormalities but nothing to worry about at the moment. I also had scan done which showed a tumour on my liver so we had nervous few weeks wait to find out what it was but thankfully its nothing to get excited about at the minute. I also have a cyst on my kidney, I swear every test I have done they find something new. I also have very high inflammatory markers in my blood so that needs to be investigated further too…….more tests!!! I also have to go on a low FODMAP diet to see if it helps some of my symptoms, its extremely restrictive and not easy to do but I’m giving it a go! I saw my cardiologist yesterday and to be honest I thought he was going to tell me he’s done all he can do, he’s reduced my faints from 10-15 a day to 1, which in fairness is good going but I obviously don’t want any! Thankfully he wasn’t like that at all and has a few suggestions but at this stage I’ve tried all the conventional treatments so anything I do is going to be experimental, so we decided to go with a new drug that works for some and has no effect on others so we’ll see how that goes. Fingers crossed it helps. So that’s pretty much it on the appointment front… oh i actually saw my nephrologist too and for once it was good news, my kidneys are doing well so no new treatment just keep doing what I’m doing which is good.
So anyway back to my shitty month, basically about a month ago I woke up and it was like a light switch had turned on and I was in agony, pain is a major part of EDS but for me it hasn’t been one of my main complaints now don’t get me wrong I’ve been in pain but nothing like this. To be honest to start with I just figured I’d over done it the day before and I was paying for it now but it has now been a month and it’s not getting any better in fact it might be getting worse. I’ve rang the doctor who diagnosed me with EDS and he basically said that’s EDS for you 😦 so I had started on a new drug lyrica anyway for my headaches but was only on 50mg a day, I’m now on 300mg and it is working somewhat but it’s not taking the pain away completely, I’m also taking tramadol and paracetamol to try and keep on top of it but nothing is killing the pain even typing this now is hurting my hands and arms…… There has been some evenings where I’m rolling round in agony and have become so agitated with it that I’ve had to take a Valium to calm me down which I don’t particularly like doing……It has not been a fun month and has been a real setback for me which is so disheartening as I had been doing relatively well and was having one day a week faint free which was huge for me!! So the long and the short of it is, this is it this is something I’m going to have to learn to deal with, I’ve been refered to a pain specialist who I should see in the next couple of weeks and hopefully they’ll have some ideas to help again keep your fingers crossed for me. Oh ye and here’s a laugh for you all I dislocated my shoulder last week……not very funny Kim you might say but guess how I managed to do it……..taking off my seatbelt…..yep real clever Kim, thank god for my poor mum who with a little help from gravity a tin of Heinz beans and a wee yank managed to get it back in place…. that was a fun evening and also where was your big strong dad during all this I hear you ask!!!! the answer is sitting in another room trying not to faint/vomit haha!! God love him he wasn’t able for it at all and he’ll probably kill me now for telling you all this!! oops!!
So I hope that wasn’t too depressing of an update and I’ll try not leave it as long till the next and fingers crossed I’ll have some good news for you all
Love Kim xx