Hi all,
So sorry I haven't been updating my blog as much as last year. I'd love to tell you its because I magically got better and my social diary is full....but its not. I just haven't felt like it. I'm having one of those phases where I'm not massively interested in doing anything. I'm not depressed just no desire to do things.
My POTS is being POTSY, up and down all over the place. Some good days some bad. My EDS is having a good old flare up. For some reason the skin on my hands is tearing very easily and I keep finding myself bleeding from a cut I have no recollection of actually doing! Very bizarre.
My gastroparesis is also on its way back in, some days I can eat twice a day but on the whole its once a day. Which isn't helping my diet as it just puts me into starvation mode and I don't lose any weight. I have lost 18lb since January and I am now stuck!
So whats been happening here, well hubs has now lost 36lbs since 4th January 2012. Hes dropped numerous trouser sizes. His work uniform is so large his trousers wont stay up without a belt and are affectionately known as clown pants by the staff! Hes ordered some new ones and is just waiting for them to come in.
In March he ran a 10k road race and did it in 74 mins so he was very pleased. My parents met him at the finish line. I would have loved to have been able to go and support him but I am just not able too. It was nice that they went there though. In June this year he is running a half marathon - I think hes crazy but hes up for it. He is doing really well and I am very proud of him.
I have seen a few friends and I am currently recovering from two trips out of the house last week. It has really knocked me down hard but I am hopefully starting to bounce back.
I am getting increasingly frustrated by many different things, so many times I have been tempted to write a blog post on whats annoying me but have decided against it as I don't want to get into that whole negative pattern of thinking again.
The garden is way behind this year due to the weather we are having. As I type this we are having another hail storm. Its so cold all the time that the heating hasn't been off which is very unusual as I normally turn it off in April.
I'm longing for warmer days and more settled weather so that I can start sitting outside!
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Saturday, 21 April 2012
Sunday, 4 March 2012
bloody hell its March already!!
Where did January and February go? Come on I want to know who has been hiding them?
Thanks for your comments on my last post - they show up in my email and I read them and then I forget to publish them .... well I have lately.
Em - unfortunately been there done that with the fludrocortisone. Horrendous migraines and did sweet fanny Adam's to my blood pressure. I tried it from March 2011 (I think don't quote me!) until November 2011 at varying doses by the end I couldn't tolerate half a tablet. I tried taking it with pizotifen as well to see if that would stop the migraines and it just didn't work. Oh well you have to give these things a go until you find the right combination / solution.
Jess - Ive been off gabapentin for two days. Bit of a long story! Isn't it always with me! You are completely correct about gabapentin being contraindicated with MG. I took it to prove the MG connection - which as most of you know is still up for debate. Day two being off it and I feel like me again, I actually feel awake and alive instead of in a drug induced fog with absolutely no energy. I mean the kind of energy where by the end of the day you can't even follow a TV programme. I stopped taking it because on Friday at 230am I woke up with the most horrendous stomach pain / gall bladder pain. I belched continually for 45 minutes - not something any lady should admit to but hey Ive said far worse on here so what the hell! The pain was so bad I thought I was going to have to call an ambulance. It shot through to my back and under my right shoulder. I did the next best thing and took a handful of painkillers and googled! It wasn't dyspepsia as I'd already taken lansoprazole as I have a hiatus hernia (courtesy of EDS). Eventually around 2 hours later the morphine began to work but I felt awful. I knew there was a link with gabapentin and gall bladder / pancreatitis so decided not to take it. I am lucky that I have that option - not being epileptic. Today I am awake and feel alive, I don't feel confused, I feel like theres some gas in the tank, for the first time since Ive taken it. I'm ringing the Dr tomorrow to tell him I won't be taking it anymore. The side effects are just too much. The gall bladder is still a little achy and when prodded makes me squeal but I'm not unduly worried. Between me and you (the readers) I fell of the diet waggon big time last night with no ill effects!
Hubby is as far as I know being a saint on the diet front! Well if he is cheating its not showing on the scales hes now just a pound away from 2stone! I'm stuck at a 12lb loss - less said the better last night was not the only time the falling off has happened!
So I thought I would give you a quick update and let you know I'm ok. Thanks for the comments and hopefully now I am off the gabapentin I can remember to publish them!
Thanks for your comments on my last post - they show up in my email and I read them and then I forget to publish them .... well I have lately.
Em - unfortunately been there done that with the fludrocortisone. Horrendous migraines and did sweet fanny Adam's to my blood pressure. I tried it from March 2011 (I think don't quote me!) until November 2011 at varying doses by the end I couldn't tolerate half a tablet. I tried taking it with pizotifen as well to see if that would stop the migraines and it just didn't work. Oh well you have to give these things a go until you find the right combination / solution.
Jess - Ive been off gabapentin for two days. Bit of a long story! Isn't it always with me! You are completely correct about gabapentin being contraindicated with MG. I took it to prove the MG connection - which as most of you know is still up for debate. Day two being off it and I feel like me again, I actually feel awake and alive instead of in a drug induced fog with absolutely no energy. I mean the kind of energy where by the end of the day you can't even follow a TV programme. I stopped taking it because on Friday at 230am I woke up with the most horrendous stomach pain / gall bladder pain. I belched continually for 45 minutes - not something any lady should admit to but hey Ive said far worse on here so what the hell! The pain was so bad I thought I was going to have to call an ambulance. It shot through to my back and under my right shoulder. I did the next best thing and took a handful of painkillers and googled! It wasn't dyspepsia as I'd already taken lansoprazole as I have a hiatus hernia (courtesy of EDS). Eventually around 2 hours later the morphine began to work but I felt awful. I knew there was a link with gabapentin and gall bladder / pancreatitis so decided not to take it. I am lucky that I have that option - not being epileptic. Today I am awake and feel alive, I don't feel confused, I feel like theres some gas in the tank, for the first time since Ive taken it. I'm ringing the Dr tomorrow to tell him I won't be taking it anymore. The side effects are just too much. The gall bladder is still a little achy and when prodded makes me squeal but I'm not unduly worried. Between me and you (the readers) I fell of the diet waggon big time last night with no ill effects!
Hubby is as far as I know being a saint on the diet front! Well if he is cheating its not showing on the scales hes now just a pound away from 2stone! I'm stuck at a 12lb loss - less said the better last night was not the only time the falling off has happened!
So I thought I would give you a quick update and let you know I'm ok. Thanks for the comments and hopefully now I am off the gabapentin I can remember to publish them!
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