There is a light at the end of the tunnel
Posted , 15 users are following.
To-day, the 13th of December is the Lucia Day in Sweden. Lucia is the queen o lights and she comes to us with lights during the darkest period of the year. In every city, they have an official Lucia and it is a very honorable thing to become the Lucia. In schools, every class has a Lucia and she also has Star Boys as attendants. If you want to know more about the Lucia celebration, go to https://en.wikipedia.org/wiki/Saint_Lucy%27s_Day and https://sweden.se/culture-traditions/lucia/ As the Nobel Prize winner always are in Sweden during the Lucia celebration, they were at least in earlier days woken up with a Lucia entering their rooom singing the Lucia song. It was said that one old man (as you know, most laureates are old) woke up and thought he as in heaven and that angels were singing for him.
It is now 11 years ago that I came off pred after having had pmr and GCA. I chose to say December 13th as the Lucia Day is easy to remember. I stayed on 5 mg for a year due to fatigue. After that I tried a new regime with one day new dose, two days old dose and repeated that 2-3 times. This way I got off pred without problems and without flares. Later, somebody called it Ragnar´s Method and many tried it and also got off pred. Then Eileen H et al made a new method where the period going over to the new dose was stetched out even more. This was called the DSNS (dead slow nearly stop) method and very many have tried it with success. When I started posting many years ago there were also groups in the US and Canada but unfortunately, those other groups stopped being on internet. In the UK group in the Northeast, I was one of those who posted their stories and I think it was very interesting to see how different we had been acting and how different we had gone through to Zero pred. At one time, I started Club Zero on the Northeast Forum and it was nice to see how many that became members as they stopped taking pred. Now I look at the posts in patient.info when there is a discussion where I think I can help with an opinion.
With the Lucia celebration, let us look forward to the lighter period and also a better period of taking pred. There is a light at the end of the tunnel!!!
(My first name is Ragnar and I had pmr and GCA for 3 1/2 years)
5 likes, 16 replies
BettyE RD_Swede
Posted
Happy Anniversary, Ragnar. I've a long way to go before I catch up with you but have been a member of Club Zero for six years now.
EileenH RD_Swede
Posted
Happy Christmas Ragnar - I look forward to your post every December. Always to good to see you drop in.
bob73443 RD_Swede
Posted
Thank you for this uplifting and illuminating post.
daisylazy RD_Swede
Posted
Thank you Ragner for lifting our spirits and to Eileen etc for DSNS. I followed it religiously for 5 years and never had a flair. I too would be at club zero but alas my adrenals didn't wake up. However doing very well. Happy Christmas to one and all especially to all the wonderful people who answers our queries and manage this forum.
bob03667 RD_Swede
Posted
Ragnar,
What a wonderful message. We don't celebrate St. Lucia's Day here in the U.S. but it's a wonderful thing to spread the word about which is what I'm going to do.
Although I've never written about it on this website, almost 20 years ago, the same year the movie, "Pay It Forward" came out (i.e. Someone does something nice for you, you have to 'pay it forward' and help someone(s) else), I created a concept called "NetWeaving" which is now known internationally as the 'business version of pay it forward'.
I'm in the final stages of converting the entire NetWeaving International website into a FREE - no strings attached - educational resource center. You can 'google' the word 'NetWeaving' to see how it is spreading around the globe.
I consider this 'Patient' website to be one of the greatest examples of NetWeaving - people sharing their stories - the good advice along with those sharing their experiences with some of the worst that PMR can muster.But there's always someone here to offer some friendly advice or a sympathetic ear.
Best wishes to all for a memorable Holiday Season and I wish that 2020 will be the year that many of us will remember as the year that PMR left our lives.
lbh RD_Swede
Posted
What a lovely, heart warming message. Thank you
lynda62707 RD_Swede
Posted
Thank you for that warm and beautiful holiday message.
From California, Merry Christmas, Happy New Year, and just Happy Holiday's all around!🎄😁❤
lodgerUK_NE RD_Swede
Posted
Hi Captain Bob of the 'Good Ship PMR & GCA' whom I met on the Canadian site, long ago and long gone.
I was the 'Donkey' woman.
I will never ever be able to say, a thank you big enough to this website, started up by two Tyneside GPs.
Five people met on this site............the result was a national charity covering England, Wales and NI and another in Scotland and the little one in the North East of England.
I will also never forget your visit to us in the North East and the result, 'Dead Slow Nearly Stop' and 'Tortoise and Hare'.These two plans, devised from your original and then two other patients one being EileenH have been sent out over the past 10 years to many countries, free of charge. Now there a numerous plans all devised by patients, but DSNS works and a lead Researcher did a small study on it and the only cav
eat was discuss it with your medics.
PMR & GCAuk North East Support was able, with never more than 200 members, but some great healthy people who raised money and in the 10 years we existed, £19,000 for research, with the last £10,000 to be spent over two years from Jan 2010 alerting GPs in the North East and Cumbria.
OK, ok I will stop now, but this site helped to start it all and for that I am very grateful. 5 years with GCA only now starting my 9th on 1 Jan 2020.
Ragnar you are a friend for life. xxxx
RD_Swede
Posted
Thank you Lodger for the very nice words. I will never forget you and the nice meeting we had in Gateshead where I told "My story" about how I got pmr/GCA and how I came up with the regime that later led to the DSNS method through Eileen et al. I have also attended a pmr/GCA group meeting in Surrey some years ago and I also told "My story" there. I am happy to have been off pred for 11 years and let us hope we will get more members in Club Zero.
It was also great fun when we "were on board the ship" on the Canadian pmr/GCA site - too bad it didn´t continue.
Anhaga RD_Swede
Posted
From Nova Scotia, thank you , and Happy Christmas!
geri02076 RD_Swede
Posted
Are you the same Ragnar I Communicated with on the other forum for so many years I used your method to come off pred then My PMA came back and they tested both sides for GCA came back negative thank goodness Its mild this time and i have flairs but i just cant find myself to take pred i cant stand the side affects so i am working through it with diet and PT
I still keep intouch with a few from that forum but often wonder what happened to the one lady in France who lived on the mountian
quiltergeri
RD_Swede geri02076
Posted
Yes. That's me. Sorry that you have a relapse but I hope you can manage it without pred now that you have decided to do so
EileenH geri02076
Posted
France or Italy? I always say I live halfway up a mountain 😉
geri02076 EileenH
Posted
she lived in France on too of the mountain and had cats or dogs she lived alone
geri
Flutterbie57 RD_Swede
Posted
Thank you Ragnar for your wonderful post and sharing your beautiful tradition with us. I wish you and all the people responsible for the help and guidance given to us on this site, a happy, healthier, peaceful New Year. From New Zealand.