Actually it's really challenging. Although I've been enjoying the creativity of making new interesting healthy vegan meals, juices and smoothies, IT'S ALL I'M DOING!! I don't have any time or energy left over to do anything else, and I'm not able to work (but that was very limited before anyhow).
I haven't taken Naproxen for 10 days -I wanted to detox from round the clock drugs and see what I was like without. I have less dizziness and brainfog, so the brainfog I have left is definitely lupus.
I've had another flare up which started on Monday, with exhaustion, muscle pain and weakness, lots of joint pain and brainfog and breathlessness. Yesterday I had a migraine with dazzling zig-zag patterns! This morning I was sick. I think even though I was very careful with the high UV levels, it still got me.
I seem unable to digest anything (I threw up my freshly made juice -I think I tried to drink it too quick) but I often feel sick and very tired after eating. I saw my Nutrional Therapist (Martina Watts) on Saturday. She reckons I don't have enough stomach acid to digest my food, so I'm buying a supplement to help (HCL). I also have bought a fancy Tumeric supplement to reduce inflammation (she said it's supposed to be as good as a steroid), Vit A supplement to help repair my gut wall, and Omega 3 fish oils. So far so expensive! I just hope it all works!!
We are supposed to be going camping next week for 3 days -that'll be interesting! I'll need to be prepared.
Time to eat some home made soup.
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Maya23
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Hi Dryad, I posted a message for you on your May 23rd comment... I'm Jill,
author of "The Lupus Recovery Diet". So cool that you are trying the diet and sharing your experience with others. Write and let me know what you're eating, etc - I may be able to help you plan it so that it's easier to do Glad that you can feel the results of dairy - that's really one of the worst culprits. Hugs, Jill
Thanks Jill. I'm feeling a bit better today and able to digest more solid foods -so I'm feeling happier too.
For breakfast I'm eating porridge with rice milk, I add a sprinkle of cinamon, a few sunflower seeds, chia seeds, and some dried fruit like sultanas. I find this easy to digest. Sometimes I'll start with a juice or a smoothie.
For lunch I am eating things like brown rice/quinoa, with a large (home grown) green salad with toasted seeds, sometimes with avocado or a beany/humous dip, tomato, [with a dressing of omega oil, chopped garlic, lemon juice and raw apple cider vinegar -yummy]. I also like a home made soup with sweet potatoes and leeks or whatever veg I've got to hand.
For a main meal I'm eating things like roasted veg and quinoa or stir fry with brown rice, or baked sweet potato and beany sauce or dip, all with a large salad.
I am really enjoying the meals -when my body can digest them- and my husband is enjoying it too (he turned 40 recently and is on a health kick). It really helps that he works for a health food company and so healthy food is easily available to us. My teenage kids are doing alright, though they don't often like all of the meals so I have the odd frozen pizza at the ready to soften the hardcore vegan diet!
I go through moods of feeling positive and hopeful.. and also moods of feeling hopeless and that it's all an uphill struggle and "will I ever get better?" It has helped reading your book and hearing that recovery is actually possible, but it's hard to keep up hope some days, especially when another flare sets in...and when I've tried sooooo many things over the years!
I have decided to give it 3 months (til I turn 40 in August) and then decide if it's working for me or whether I need to start taking the steroids in the Autumn. I would rather not have to take the drugs.
You're doing a lot of great things! I know it's a challenge when you are preparing food for a whole family.
In the beginning it's best to cut out every food that is known to cause an autoimmune flare. Then, once you are feeling better, you can add additional foods back in, and see if the food causes a flare.
So, based on what you wrote, I have a few questions for you:
1. Is the porridge wheat/gluten based? I found out about a year ago that gluten definitely causes joint pains for me. So, been gluten free ever since.
2. You mention a dressing with Omega oil. Be careful with oils... most oils are very inflammatory. I have a good article written about oil by a vegan nutritionist... I'll find it and post it on my blog tomorrow. LupusRecoveryDiet.com/blog
Most of all, please keep the faith. I have heard back from hundreds of people, who after making the diet changes, now feel so much better! I'm about to write a second book, and include LOTS more stories!
I read your post with interest, I too have been looking at diet, as it is something I have some knowledge about (I originally trained as a chef) and perhaps more importantly one area where I can make a difference for myself without drugs. I have been vegetarian for a number of years, I understand the time and dedication it takes to cook differently and change habits, especally with a family to consider. I have found a really useful cook book. And have a number of other recipes that don't upset my stomach and I think make a positive impact on my energy levels.
The useful book is Rose Elliot's, Low GI vegetarian, It was under a tenner on Amazon. The food is vegan, which the choice of adding dairy. Most folks would loose weight eating this way, I have managed to maintain the same weight after 8 months on pred.
I've just spent two weeks away, where I've eaten mainly what my family have placed in front of me. I can therefore conclusively say that the low GI gives me a much easier time with stomach pain and swelling. My flares arn't yet managed so I don't know if I am impacting them, its hard to say, I think I may have a range of triggers! I think it's time I got myself a copy of Jill's book too.
I look forward to hearing more about how you get along. If you are interested in pooling resources maybe we could chat some more?
Hi Seb, thanks -yes moral support is what I need, I'm really struggling at the moment. I keep having emotional meltdowns when I get so tired of struggling with all the physical pain and trying to not take pain killers (now I know it has been damaging my gut). Some days it's so hard to look after myself let alone my family too... and the diet has just put me under huge amounts of more stress! I'm not sure how long I'm going to last!
I don't think I can deal with another book.. I have a whole row of them on my bookcase already (it's not the first time I've done this). Last time it did help -I had higher energy levels and less pain- but that was a few years ago when I had a diagnosis of ME.
Sorry I wish I could be more positive but I'm at the end of my resources right now.
I've had some wise words of advice from my nutritional therapist: that it's too bewildering to listen to so many opinions, and that I should just listen to her, and she's given me a very sensible program. Next time I go shopping I'll buy gluten free porridge, and instead of rye bread I'll get gluten free.
Most of all she's told me to chill out, relax and just aim to resolve one thing at a time. The last thing I need at the moment is more stress! It's starting to feel less overwhelming again. Phew!
I'm sorry you are at the end of your resources. sorry too that you are feeling overwhelmed...for what it is worth, I agree it is best to listen to someone you trust, I hope you relax and kick the overwhelm to the kerb and keep going.
I hope you feel brighter soon, I like "Nouska" believe you should really check with your Dr when changing so much about your daily intake of food and medicines.
Great news Dryad. Someone recommended to drink vinegar and water to increase abitlity to digest food, or charcoal tablets. I have just started trying that. I think I am suppose to drink after eating. (Charcoal on the way in mail). I suspected the low Hcl too. Interesting.
Still taking my supplement of anti inflammatory herbs, probiotics ans enzymes.
Let me know if the hump on the back of your neck goes down with this diet. Mine did.
Didnt know about vit a repairing gut. Will have to look into that.
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Glad that you can feel the results of dairy - that's really one of the worst culprits. Hugs, Jill
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