Yep, that scared the bejezzus out of me and after paying my 28 euros I left the surgery stunned and then started to cry. How the hell did I get myself into such a mess? It's not fear! Why me?
So for those with UC, well, you know the emotions we suffer. But (2 days later) now I'm pissed! So I decided a few things.....NO, I will not up the preds, in fact I dropped to 5mg today....and no I won't take any medicine that could affect my heart! I'm so pissed off that I'm cortisone dependant now that there is no way I'm going back up to 30mg. These are the reasons why:-
- Yep there is a bit of mucus and bleeding, but no I'm not running continually to the toilets.
- I've been stressed over my boys op and family stuff going up now for quite a while.
- I've been eating way too much sweet stuff and god knows what that's been doing to my insides.
- I've put on 4 kgs and that is just pissing me off now too
- I'm sick of living in France and want to go home..it's just too hard here
- My boy has been getting too many sore tummies lately and that's playing on my mind. I don't want him to have what I have.
- Well, I'm still stuck here for another year for I can't move, but I can find another GI that speaks a bit more English
- Not increase the preds, instead I'm going to finish up on then in 7 days
- For at least the next 3 weeks I have stopped eating eating refined sugar...no chocolates, no sweeties, no ice-cream, no sugar in tea (and that should help reduce the weight)
- Do a bit more exercise..an extra 30 mins walking or some wii fit maybe.
- Listen to Guy's hypnotherapy recording with Geoffrey
In 2 weeks I go back to see my GI doctor and since I'm not following his instructions I'm really hoping for an improvement.
Hi Paula. Sorry that you are continuing to have such a bad time. I real feel for you having to cope with the UC in a foreign health system. I'm sure French health care is excellent, but god knows I've had enough bloody trouble getting my feelings/thoughts and situation across to docs/consultants in the dear old NHS, I can't imagine how stressful it is in an unfamiliar system. That has always been a primary reason why my wife and I have always ended up putting moving abroad on the back-burner.
ReplyDeleteI think you are making the right move to take control. I'm convinced that you HAVE to be proactive with UC. Improve your lifestyle (however painful that maybe in the short term - no sweets, no booze, no overindulgence - whatever you need to do), be as positive as you can, do the NLP and stuff (I have definately found this very useful). BUT also, you must find a doctor over there who you can communicate with and who is supportive - it is your body and you have the right to deal with the disease as you see fit, but it has to be better to do this with the hospital/doctors on-side. You should be able to discuss with a doctor how you want to approach treatment, they should be able to cope with the idea that you have some input too. I had to really dig my heels in with my consultant before he backed down. Now I see a nurse-practitioner who is very supportive, but also clearly available should my alternative path get rocky.
Keep fighting.
Hey Paula.I sorry you have been having a rough time. I cannot imagine how frustrating it must be to be trying to work through a language barrier having UC.
ReplyDeleteI agree with Rich about being pro-active. I know from experience that this is more easily said than done sometimes. Especially when I had been trying many different things and nothing yielded significant results.
There have been a few new things that I have been doing recently that I have seen impressive results with in this past week, although I know what works for me might not work for someone else.
Feel free to message me if you want to know more of what I have been doing. I did not want to bombard you with a bunch of new tips...just wanted to offer some encouragement and for you to know that you are alone. I have found that blogging about this has been EXTREMELY helpful for me. Their have been many days that I have felt very alone in this and it's nice to see that I am not.
Hope you start getting better soon.
Thanks for the support guys :D ... I'm 4 days into having no refined sugar and I've stopped the tea as well. Back onto eggs, tuna, chicken, bread and easy to digest food...you get the drift..the good news is the symptons haven't gotten any worse, but too early to tell if they are any better. Down to 5mgs of pred and holding steady for the last 7 days of them. I've 10 more days to make a turn around before heading back to see my GI. Here's hoping.
ReplyDeleteHey Dan, I've no idea how to send you a mail, as I can't find a link on your blog anywhere, but stick up a blog on your tips. I've seen you tea ones already, but I have to be careful with ginger when I'm in a relapse as it's not good for me..once I'm in remission, ginger is fine...just now now..some foods are just like that...oh how i miss ice-cream, but I need to stay 'clean" for a few months I think :D
ReplyDelete