Surviving Multiple Chemical Sensitivity!
Heroes..
Discussion started by Jodie 12 years ago
There are some real heroes around when it comes to fighting this stuff. Maff you are one of mine :) Here's another http://www.julieflynn.myevent.com/3/miscellaneous1.htm - Julie has just started up this website - give her a thumbs up in the guest book, people, if you have time -it will mean a lot to her :))
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Maff
Great to hear the removal of your amalgams made such a positive difference Jodie. I am lucky enough not to have any fillings myself but I am always concerned when others embark on having them removed and/or doing chelation therapy. I feel it could go either way unless working with a doctor who REALLY knows what they're doing.
Sounds like you have a great GP, as I do. Great that they were able to work with a sympathetic haematologist to get you a test run with a general anaesthetic. Persuading private insurance to pay for it must be bordering on a miracle! ;-)
I also now have a great GP after years of being dismissed by them. He listens to all my theories, usually agress, and does everything he can to find ways within the NHS to get tests done and have things prescribed. He even prescribed the VSL#3 probiotic for me until the local PCT decided it is not available in my area.
Sounds like you have a great GP, as I do. Great that they were able to work with a sympathetic haematologist to get you a test run with a general anaesthetic. Persuading private insurance to pay for it must be bordering on a miracle! ;-)
I also now have a great GP after years of being dismissed by them. He listens to all my theories, usually agress, and does everything he can to find ways within the NHS to get tests done and have things prescribed. He even prescribed the VSL#3 probiotic for me until the local PCT decided it is not available in my area.
11 years ago
Jodie
Oh you are so right! I was also forgetting my Local Heroes! Kate Neil (www.cnelm.co.uk/) who gave me the confidence to have my amalgams removed - expensive process and not undertaken w/out good reason, but made a huge difference. My patient local GP and a brilliant London Haematologist who bent all the rules to give me a tester gen anaesthetic for a procedure that only needed a local - and managed to persuade private insurance to pay for it!
11 years ago
Maff
Thanks Jodie, Valencia was amazing
Getting back to the topic you started(!) - my heroes are all those doctors who really care about their patients and go against the medical establishment, often risking their reputations and/or careers in their efforts to help people with environmental illnesses.
For MCS specifically two of my heroes are Professor Pamela Reed Gibson and Professor Martin Pall. Both have done so much for those with chemical sensitivities and are genuinely friendly and caring people.
Getting back to the topic you started(!) - my heroes are all those doctors who really care about their patients and go against the medical establishment, often risking their reputations and/or careers in their efforts to help people with environmental illnesses.
For MCS specifically two of my heroes are Professor Pamela Reed Gibson and Professor Martin Pall. Both have done so much for those with chemical sensitivities and are genuinely friendly and caring people.
11 years ago
Maff
Glad the new computer is a lot faster!! All of the programs and junk we accumulate on them slows them down too. It seems there is an issue with the site/server making it slow to load at the moment however. I'm going to need to hire a pro to take a look as soon as I get back from a mini holiday/vacation in Valencia, Spain next week.
I hope the site behaves for you so that you can take those sideways steps and investigate other factors that might be contributing to your illness!
I hope the site behaves for you so that you can take those sideways steps and investigate other factors that might be contributing to your illness!
12 years ago
Jodie
New computer installed - waaay faster! this is much better, download is almost immediate. Well the other one was about 7 y/o ... :s
>>many of the illnesses I decided to cover were connected>>
yup I've been coming to the same conclusion. I'll be taking some sideways steps to other parts of the site now that downloading is much faster. )
>>many of the illnesses I decided to cover were connected>>
yup I've been coming to the same conclusion. I'll be taking some sideways steps to other parts of the site now that downloading is much faster. )
12 years ago
Maff
Well thank you again Jodie, I really appreciate it. It's hard work to keep going with this. There is so much to do running the site besides writing and editing that people don't think about. It's comments like yours that spur me on!
I could see early on from my own illness and bits of reading I'd done that many of the illnesses I decided to cover were connected...and it's my feeling that research over the proceeding years has shown this to be the case. I hope having everything here in one place is helpful to people...although I admit that navigating could be a bit easier. My advice is just to use the Google site search box at the very top right of each page if you know what you are looking for...
The speed issue is probably partly your old computer and partly the site itself. I have used all the tools available to me to speed things up but it's still not a fast website...mainly due to size and my lack of expertise with initial design! I hope it doesn't put you off using the site too much :/
I could see early on from my own illness and bits of reading I'd done that many of the illnesses I decided to cover were connected...and it's my feeling that research over the proceeding years has shown this to be the case. I hope having everything here in one place is helpful to people...although I admit that navigating could be a bit easier. My advice is just to use the Google site search box at the very top right of each page if you know what you are looking for...
The speed issue is probably partly your old computer and partly the site itself. I have used all the tools available to me to speed things up but it's still not a fast website...mainly due to size and my lack of expertise with initial design! I hope it doesn't put you off using the site too much :/
12 years ago
Jodie
Not at all, it is totally deserved - there aren't many sites dealing with our problems that are as comprehensive as yours and that manage to keep going.. + none that I know of where there is also support for what are often overlapping conditions, Fibro/CFS, Candida, & so on. The only prob I have is that the pages are really slow to download, but that maybe partly my ancient comp, about to be consigned to that happy computer cafe in the sky, & replaced with something zippier. Fingers crossed
12 years ago
Maff
Hi Jodie,
I'm really sorry it's taken me a while to reply to this post. I am extremely flattered (and a little embarrassed) that you consider me to be a hero! Just fighting my own battles and trying to help others along the way. I can't tell you how happy it makes me that you feel I am doing a good job
Thank you also for posting the link to Julie Flynn's website. I had not come across it before. I read her story and left a comment in her guest book. It sounds like she is doing some great things to raise awareness of MCS and the dangers of chemical exposures despite being so badly affected herself. Definitely a hero!
I hope you're doing as well as possible Jodie. Take care
I'm really sorry it's taken me a while to reply to this post. I am extremely flattered (and a little embarrassed) that you consider me to be a hero! Just fighting my own battles and trying to help others along the way. I can't tell you how happy it makes me that you feel I am doing a good job
Thank you also for posting the link to Julie Flynn's website. I had not come across it before. I read her story and left a comment in her guest book. It sounds like she is doing some great things to raise awareness of MCS and the dangers of chemical exposures despite being so badly affected herself. Definitely a hero!
I hope you're doing as well as possible Jodie. Take care
12 years ago
