I have just finished writing a book on how after 6 yrs on medication(6 diff drugs) i was able to come off them all. I managed this by changing my diet and lifestyle for the better. I am an exercise teacher specializing in the over 50`s. teaching tai chi and falls prevention. Last oct i was diag with another auto immune disease Lambert eaton and once again after 14 years drug free was put on 9 diff drugs. I spent 6 weeks in hosp, 2 months of outpatient physio and 2 months with a naso gastric tube stuck up my nose. On release from hosp i was down to 7 drugs and now almost a year on i am down to just 2. Steroid and azathiaprine but am decreasing the steroid with the hope of coming off soon. I have just ran my 13th marathon 4 weeks ago The beachy head marathon. I am back to full fitness and my hope in writing this book is to help others i just have to find someone to publish it and i will give all the proceeds to lupus and lems for research. Wish me luck and keep well my friendsx
My book on livinbg with Lupus without drugs. - LUPUS UK
My book on livinbg with Lupus without drugs.
Wow you are very inspiring, keep up the good work! It's very encouraging to hear that you are coming off your drugs, I too believe that the drugs often cause more problems than they solve (particularly if you are like me and don't have organ involvement) and it's good to question them. It's very empowering to take control by managing your diet & lifestyle. good on you 
Thanks Dryad, Hey how do you add the smileys???? I`m pretty new to all this hi-tech stuff. just got my laptop in march this yr when i was told i couldnt work for 3 months. So if i hadnt got ill with the lems i wouldnt be chatting to all you nice people. look for the silver lining. Its always there....
Hi
To make a smiley is colon : then space - then bracket )
To make a winking smiley try semi-colon ; space - bracket )
Or one with a big nose try colon : zero 0 then bracket )
happy smiles xx
:0)
Wow, well done. Have you thought of publishing it in kindle version only to begin with....I think it can be much cheaper and easier. I maybe wrong, but worth a try. You have given me huge hope for my daughter who has just been diagnosed at 12. She is really sporty and it is the one thing that keeps her positive. xx
Hi Pouy, Thanks for Kindle advice, will keep it in mind. Which sport is your daughter into? I must say 12 is young to be diagnosed, although when i think back my lupus was giving me trouble at that age too. I had alot of unexplained things going on. On a positive note at least she knows what it is and you can all fight it. Sport has been my life saver, first with my lupus then the lems. Give your daughter a big hug from me and tell her also that healthy eating helps too, thats not to say you have to forgo all treats but try to avoid the junk. Keep smiling x
Hi again, She plays basketball, sometimes 4hrs a week plus a match every saturday, and tennis. The tennis was hard in the summer because of the sun and heat and trying to get matches changed to evening ones. The suncream makes her really hot, but found one in the states that we have tried, and it seems to let her skin breath a bit more. Ski season is about to start, so she is looking forward to that. This weekend she said she wanted to start hill running....plenty of those in the pyrennees!!
Thankfully we don't really do junk food, apart from the odd pizza on a friday night.. Good luck with the book, can't wait to read it and thanks for your kind words. xx
sound very energetic. Good girl. on the sun cream theme i use 50plus 4 star ambre solair light and silky. it rubs in well and doesn`t feel thick or sticky. Skiiing= how wonderful. I love skiing but i dont think my raynauds would like it much these days. Hill running awsome. go to it tell her from me
i like the sound of this book as i am petrified of the side effects of the drugs well done
Good 4 u! I myself no longer take meds 4 the lupus as I found the side effects totally outweighed the benefits (that is just 4 me personally of course) but I DO live on a concoction of pain killers & herbal pills. We all find our own way of easing things up (eventually!) but the most important thing is learning 2 listen 2 our bodies properly and learning from them (as it sound very much like u HAVE done). I hope things continue 2 work well 4 u :0)
Can't wait to read your book, lemonface. Please keep us posted on when & where it's available.
Hope you find a publisher soon. Good luck.
Hi Lemonface, CONGRATULATIONS, It's really inspiring & hopeful to know that you have managed yourself so well and limited your drug intake, I think the drugs, while reducing the joint pain and swelling is just too high a price, causing so many other problems. I'm just getting back to exercise, I practised yoga for 12 years and while I now fall asleep in class, and am weak, I'm determined to go anyhow. I really believe in diet too and eat low GI. I'd really love to buy and read your book. Please keep us posted, have you considered self publication. Maybe you could cover the cost and reclaim it from sales before donating the proceeds?? Just an idea as I'm very keen to benefit from your knowledge.
Hi Sebitha yoga is great i too do yoga. i remenber in early days of my lupus in a special needs class i fell asleep at the relaxation in the beginning and slept for the whole 1 1/2 hours , i woke up with the teacher stroking my arm asked her why she had not woken me to which she replied she figured i needed the sleep, haha it was funny i hope you dont snore....? Self publication will be another avenue if no joy from publishers thanks x
Perhaps you need some people with Lupus, with various antibodies and on different levels of medication, to try your regime for a while to see if it works for them. If it does, you should find it much easier to get a publisher and the media will be interested in promoting it by interviewing the patients who have seen a significant improvement.
sounds good, but how do i get people to try it without them reading about it first? catch 22. I do try on the fb to encourage people to lead a healthy diet and lifestyle.
Hi Lemonface, Yoga and napping, we both know that one then! It has taken me a while to accept how my body has weakened, which is so,ooo obvious in my yoga. I am now over that mind hurdle and I always knew I had to start and acknowledge that, rather than distress myself with how I used to be. It has taken me a while, and the important thing is i'm there now.
Back to your book, I'd pay you for a PDF copy, and if enough people did this you would have evidence.
Then on FB maybe you could make a page give a little info away, just enough to be tempting and valid, get your friends to like it, then their friends would see it too. I'm currently looking for ways to make an income and have made a page, it was much easier than I anticipated, next I need to find out if I can use paypal free of charge to accept payment. ; )
Sebitha, you only pay PayPal when you make a sale. It's usually about 3%.
Thanks for that Harborpoint
Can we get a copy of this book in the US ?
Thanks
David
Hi David, Just at the process of trying to get a publisher, will keep you posted. if no luck may just put it out on amazon or the web or something. want to see if i can get it published the old fashioned way first. Thanks for the interest. You can always friend me on face book and keep up to date on what i get up to and how i do it.
Lemonface, Congrats on completing your book! I also have gotten lupus out of my life by diet and lifestyle changes. I too wrote a book, "The Lupus Recovery Diet". It's been out for about 6 years, and I have heard back from hundreds of people who have gotten amazing results.
The book I wrote includes the stories of 11 other people with lupus, rheumatoid arthritis, and fibromyalgia. I included other people's stories, so that it was more believable. Now that I have hundreds of testimonials to the power of diet and autoimmune disease, I am writing a second book. I think this one will actually get physicians to pay attention to the effect of diet! That's my goal. Not everyone wants to make diet changes, but I want everyone who is looking for an autoimmune answer to know about the it. You can purchase my book at Amazon.co.uk or learn more about it and me at LupusRecoveryDiet.com
P.S. There is a PDF version of the book at LupusRecoveryDiet.com
Sounds great! How do I get a copy on pdf? how much is it? who and how do i pay.? I know what you mean about alot of people not wanting to change their diet but quite frankly i cannot understand why they wont even try. I mean any thing thats not drugs is in my mind well worth giving a go. It has certainly worked for me and obviously for you too . Looking forward to reading your book. Where are you ? Is it the US?
Lemonface, please contact me... I can include your story and your book in the new book I have coming out. Jill
You are an incredible being!unique!good for you ;))))brave
Hi Lemonface, just a quick question...
You said you came off the meds for Lupus through the help of diet and exercise but then recently was diagnosed with Lambert Eaton. What activated your body to develop another autoimmune? Why was it necessary for you to go back on the meds, why weren't you able to treat it naturally?
My aunt suffer's from SLE and she has been drug free for 10years. She too changed her diet, and in addition takes supplements aswell as Homeopathy.
She has said she found detoxing the emotional, mental, physical body essential as part of the healing process.
Currently she remains inactive of the Lupus and hopes to continue
Hi Chucch, When we are auto immune they reckon we have a faulty gene.something we born with. As for what activated the Lambert eaton who knows.? What activated the lupus? The reason i went back on the meds was the fact that when the Lems hit i was a ragdoll. The lems means the message from the brain does not hit the muscle.( Internal and external). so i was fed by tube for 2 months, couldnt lift my arms, legs, or hold my head upright. In hospital for 6 weeks i was on 9 drugs, I am now only on 2 and the Neuro consultant is weening me off them (you cant just stop suddenly) so hopefully soon i will be off ALL meds again. So pleased to hear about your aunt managing withput the drugs too, thats great. I am back running, doing the gym 3 times a week , cycling, and teaching Tai Chi and other exercise classes, so I am fighting back. This time last year I was still in hospital. I am really going to enjoy this autumn.Best Wishes to you and your aunt.x
Happy New Year all
Just thought i would update you all.
I am still trying to find a publisher for my book. I will keep you all posted.
My local newspaper has done a big feature on my story and it has produced a bit of interest. An agency is trying to get it into the national papers so keeping fingers cossed. Lupus uk have just e mailed me to say they will be putting a bit in march news and views. so things are happening. Stay well as you can my friends x
Hi Lupies, Just thought i would update u all with news about my book. The local BBC radio solent have taken me on as a `Julians Person` Julian Clegg`s breakfast show to talk about how I manage my Lupus and Lambert Eaton with healthy diet, lifestyle and exercise. I did my first chat with Jules last friday and have another one in April. I`ve already had an email from a lady with Lupus and another lady with Lupus who has just moved to Southsea has come along and joined my Tai Chi class. Both of them I have told of this blog and Lupus UK. I am still working on getting my book out to the public so watch this space folks. All proceeds will go to Lupus and Lems. Keep smiling my friendsx
Well Folks.
My book `Mutiny in my body, how running has saved my life` is now out on Amazon. It is on e book too, and when I can work out how to do it(technology is not my thing) I will put it on Kindle. My royalties will be shared between Lupus, Raynauds and Lambert Eaton charities, so if you buy a copy Thankyou very much. Big Hug to you all. x
Lupus, feels like I'm on my own. 
Scared my lupus isn't manageable and about adding mycophenolate
Advice please 
Managing my Lupus without having to work has been so much easier!
Going on with life with lupus
