Look I know this has been done to death but just stic... - NRAS

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Look I know this has been done to death but just sticking it out there!

Bon1 profile image
Bon1
38 Replies

Like so many of us I am sure, I have been mulling over the whole diet thing since fairly early on in this carnival. Looked at Paddison, seems Pretty difficult to sustain in the real world. Paid good money to see a functional health doctor who has come up with a much more manageable, but still severely lacking in fun thing that at least allows meat and eggs.

But I suppose the point is does any of it actually work?!?! I emailed my esteemed professor gastroenterologist today and asked him if there was any evidence to suggest it was worth bothering. He seems to feel the answer to that is no. So what do you guys think? Worth the pain???

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Bon1
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38 Replies
Leonwp profile image
Leonwp

What an interesting post, thank you for raising it, is there anything specific ur trying to acheive?, i looked at issue being type 2 diabetic (without a weight issue) and RA sufferer, i decided to just cut out processed food, im not sure if it really helped because my health has been such a disaster with RA and i dont have a comparable, but i have long felt that given the apparent growing number of cancers in the last 100 years that there is to me a strong possibility that a trigger exists in something which in very common use or exposure like canning process or motor vehicle or aviation exhaust or food additives etc and will eventually be discovered, so i figured as i was having issues with digestion and food in general i decided to stop processed food.

Blessings

karilynn85 profile image
karilynn85

This is a pretty divided subject and seeing as RA is incurable and lifelong as it stands, I ventured into a full diet change seeing no harm in the attempt. I thought, what can I lose other than a few pounds? I was already pretty addicted to sugar and not-so-great foods as it was, so I thought of it as more of a venture into a healthier me and if it helped my RA, great.

It appears the overwhelming majority of doctor's in western medicine do not see diet as beneficial for autoimmune disease. But then I think about Dr. Terry Wahls, diagnosed with MS (autoimmune disease) and bound to a wheelchair, who reversed much of her MS by eating a paleo diet with a lot of vegetables and is now riding a bicycle, so I had to give credit where credit is due.

I myself have had MANY positive changes since I started a low-carb paleo diet and not limited to improving my RA (which it has) My blood pressure is lower, my blood sugar has stabilized, my cholesterol is better, I have far more energy, I am much less depressed, I no longer have GERD/acid reflux (that I was on medication for) and my inflammation markers are normal now. My joint pain is nearly non-existent. I do have the occasional flare and YES, I am on methotrexate.

That's important to mention because I have a seropositive RA and I do still use conventional medicine to treat my disease, even despite my diet change. For me it's probably always going to be both, but my disease is a lot better on paleo, when I'm not eating a lot of sugar, grains, and dairy. Does it work for everybody? Nope. Would I ever tell anybody else they should try it? Nope. Because at the end of the day it's a personal choice and it's up to you.

I think there is a lot of controversy over diet change because people with chronic illness feel like they're being made to feel like they aren't doing all they can to help themselves. I think that's wrong and nobody should be made to feel like they're not doing everything they could be. Changing your diet and lifestyle should be a personal decision that you make for yourself. You can drive yourself absolutely insane trying to delve into evidentiary support or figuring out which side is right (functional vs. western medicine) because at the end of the day every body is different. It's a balance to live your best life.

You will find people on each side who are convinced that their approach is best. It's easy to feel overwhelmed or torn. If you want to be able to say you tried, and who knows, maybe you will have amazing results. I have, and not even just with my RA. I'm glad I tried, but I went into it with an open mind because it's very easy to feel disappointed when you have a disease and something you attempt as a course of treatment doesn't pan out.

So, to answer your question, does any of it actually work? Yes for some, no for some. Will it work for you? Who knows. Would you like to give it a try?

Witness2 profile image
Witness2 in reply to karilynn85

That's a very balanced summary, bravo Karilyn! It's exactly how I feel about diet and taking personal responsibility. I tried SO hard in the early stages (35 years ago) and lost tonnes of weight, went down to 7 stone while being 'treated' by a Naturopath, but although I kept symptoms at bay, clearly the RA didn't go away and I now believe that I was daft to refuse drugs for 10 years because I sustained a huge amount of bone damage in that time, slowly but surely. Your approach is far more sensible embracing as you do conventional medicine while having the best possible diet. On that subject, I have now accepted that I'm fortunate that Enbrel works for me, no other meds needed for joints bar the occasional paracetamol (nothing helps my headaches unfortunately) so after years of searching, I'm more accepting of What Is, and have decided to simply enjoy good food - within reason and budget. As I've said before, it's the puzzling, the psychological toll this disease takes which is the greater challenge. We all deserve medals!

Who knows? I've had two autoimmune diseases in my life, MS & RA. My MS "just went away" on it's own and my diet at that time was beer, pizza & cigarettes. I was only 22 then.

I became a vegan in my 30's and developed RA at the age of 46. I now don't follow a vegan diet anymore. I know for a fact that food has no effect on my auto immune diseases....but my hubby, who developed RA shortly after me, does go into a flare when he eats rubbish. So to make a long story short, my hubby now watches what he eats and he has not had a flare in a longtime. He still has RA, but it is kept under contol with only 1 hydroxy a day.

Jeanslmn profile image
Jeanslmn

I keep reading how a meditarian diet is the best for RA sufferers I keep meaning to give it a try not got around to it yet

in reply to Jeanslmn

I love the meditarian diet, but sadly it has no positive effects on my RA.

Mall profile image
Mall in reply to Jeanslmn

Unfortunately I find that to many acidly fruits like tomatoes oranges strawberries etc lead to more pain. Hard to imagine an Italian diet with out them. But give it a try it may be just the thing for you.

nomoreheels profile image
nomoreheels in reply to Mall

If you leave the fruit we have to put up with in the UK to ripen on a sunny window shelf or if you're fortunate enough to have a greenhouse even better, you should find they become a bit less acidic as they ripen properly. That way they shouldn't hurt! Unfortunately here the fruits from Italy, Spain Greece & others which are picked underripe for the journey in refrigerated lorries & for longer shelf life will never give us the flavour we expect or know from the fruit we buy in the Mediterranean, veg neither. That's the beauty of buying fresh from market in the Med from local growers, or even here in the UK sometimes, the taste is just so so different, they actually taste how they should.

If you ever see the Vanilla Blood orange to buy anywhere do try it, it's gorgeous. It's the sweetest orange you'll probably have ever tasted. I was told it has the highest pH of any orange by a friend of ours in Spain, she has a tree in her garden that she inherited when she bought her house, never tasted the like!

in reply to Jeanslmn

Isn't that really just good food? With the focus on nutritious cooking and salad oil, generally olive oil, instead of some of the weird concoctions we've been sold for so long? And weighed in favour of veg .... with some meat, some fish, some wine, real variety .......

popsmith1874 profile image
popsmith1874

It is a great discussion and it just goes to show how different in the way our bodies react to different things and what works for one will not work for another xxx

Needforname profile image
Needforname

I'm beginning to think the diet thing is over rated. Sure it helps with your overall health, but I've personally yet to feel any better since going gluten free, paleo. Everyone appears to be different though.

I agree with you that the overly strict diets are not very fun at all. It sucks not being able to go out to eat, having to munch on mostly bland food all day.

Others seem to think the diet does help them. I follow Clint Paddison's email newsletter, but I find much of his info whacky and completely contradictory to what most alternative health folks say.

For example, just the other day he mentioned that avocado and coconut oils should be avoided by RA sufferers because they contain too much fat. Yet Dr Axe, Mercola and just about every doctor alive claims that healthy fats are healing and great for RA and healing the gut.

My guess is that Clint may be simply allergic to those foods, and he's confusing his own food sensitivities with something that he deems universal. The strangest thing is that he doesn't even offer an alternative (at least not in his free newsletter). If we can't have healthy fats, then what fats are there?

With all this said, I'm still going to give the diet / supplement / LDN thing another month or two.... which will put me at around 6 months. If I don't feel better by then, I'm gong to have to resort to Methotrexate and begin the lifelong path of suppressing the immune system.

Sorry to sound so glum. I'm just providing my experience with the diet thing so far. I hear so often on how much of a miracle that turmeric paste, black seed oil, LDN, borax, CBD, etc are, yet nothing ever helps. Even prednisone didn't help me.

I've often wondered if folks who don't have luck with diets, supplements, and even meds, may have an underlying infection (like an infected tooth or something that's constantly supplying the immune system something to fight).

Best of luck to you.

in reply to Needforname

It just blows my mind about the Clint Paddison diet. He sure is raking in the money. I just can't understand how this one man can focus on "the cure of RA with the the Paddison diet" and be a comedian.

youtube.com/watch?v=lci_vZY...

Needforname profile image
Needforname in reply to

I lost respect for him after reading some of the whacky stuff he posts, with no evidence to back it up. He makes Dr Mercola seem mainstream.

He also seems very unresponsive to any non members of his "program". I remember leaving multiple questions on his Youtube and Facebook pages, but he never replies.

I recently emailed him asking about why he claimed that coconut and avocado were bad for RA, and he responded with only the following: "The daily required EFAs are exceeded in the baseline phase of my program. It's in the buckwheat/quinoa naturally."

Whatever that means. Apparently he has secret knowledge that nobody else has. And apparently the answers are only revealed after payment to his program.

Props to him if he really "cured" his RA through diet, and to anyone else who has. Maybe I'm just jaded and overly skeptical from years of wasting money on a multitude of ineffective treatment plans, diets, products, etc.

andyswarbs profile image
andyswarbs in reply to Needforname

Needforname said "If we can't have healthy fats, then what fats are there?"

On the one hand try bending a leek or celery. These like all vegetables have fats in them. Similarly nuts and seeds are very high in fats.

On the other hand Paddison is not prescriptive about not having fats (or any other food). Each person works out what's right for them. That's why there is a lot of emphasis on the elimination process. Oils was the last thing I eliminated and that was around six months after starting the program, and I now wish I had eliminated oils sooner.

Also for those foods that are so eliminated, the program has a re-introduction process enabling people to return to some foods once their symptoms etc have gone. And now - gently does it - I am not so worried about oils.

What the Paddison program is prescriptive about is sharing what works at each stage of recovery.

----

Also "Others seem to think the diet does help them. I follow Clint Paddison's email newsletter, but I find much of his info whacky and completely contradictory to what most alternative health folks say.

For example, just the other day he mentioned that avocado and coconut oils should be avoided by RA sufferers because they contain too much fat. Yet Dr Axe, Mercola and just about every doctor alive claims that healthy fats are healing and great for RA and healing the gut."

Healthy fats are healing, that there is no doubt. But at the same time they can be very damaging. Early on I overdosed in avocados to help heal my liver - and that process succeeded. But if your body is sensitive to oils or foods with a high oil content then surely it would sensible to pay attention to that.

Or to put it in another way, the devil is in the detail.

Needforname profile image
Needforname in reply to andyswarbs

Maybe there is something to what Clint is saying, but if he's going to tell folks to stay away from Avocado and Coconut oil, there should at least be some followup info for the reader. That's all I was trying to say.

It's stressful enough for folks trying to adjust to these strict diets...clarity is important in this sea of contradictory info out there on the net.

I dunno... I find myself barely eating as it is because I personally find the no nuts, no grains, no dairy, no soy, no gluten, no nightshade diets very very bland and boring. To the point where I barely eat. Also, no matter what I eliminate, I don't feel any better. So maybe diet changes don't help everyone. Maybe it's bacteria with some people?

I dunno...maybe I'm just overly skeptical, overly bitter, overly stressed, and overly confused from this never ending search for pain relief. Props to anyone who has luck with this stuff. It must be an amazing feeling finally being pain free. I don't remember what that's like.

nomoreheels profile image
nomoreheels in reply to Needforname

Even though I think it's a good post initiated by Bon I've resisted responding up to now for reasons already raised by some. I would just like to say NFM how I fear for those who've found themselves in the position that you find yourself in, barely eating in an attempt to eliminate the so called inflammatory foods. Not everyone reacts to them so please when you're ready to try to reintroduce the ones you've stopped eating & found no response from, we need the vitamins & nutrients in many of the foods we've often been told to avoid when diets are discussed. I can't be alone in being able to eat the nightshade family, without any negative effects, & other supposed 'bad' foods those on the eating plans have mentioned. As an example I eat tomatoes, potatoes & many of the pepper genus with no ill effect. I eat an avocado every Thursday lunchtime (it's my post MTX not-so-hungry day), they're full of goodies.... monounsaturated fat (known to lower LDL cholesterol & raise HDL), folate, Vitamins K, B5, B6 & E, potassium, no salt & low carbs..... all wrapped up in the humble avocado. You may have read that nightshades contain Glycoalkaloids, a natural pesticide, so often used as ammunition from the 'avoid' campaigners but what's usually omitted is that that Glycoalkaloids are anti inflammatory! Any normal person doesn't eat anywhere near enough for it to become a problem, similar to headlines for supposedly carcinogenic foods, never in the headline does it state the vast amounts that have to be eaten for them to be considered to cause cancers.

Don't beat yourself up if you don't find any benefit, these diets aren't for everyone. Try just eating a balanced, informed diet & maybe like me you'll feel better for it.

I eat nuts, dairy & bread too, there I've admitted it! 😄

Bon1 profile image
Bon1 in reply to nomoreheels

😀 what's the world come to that this is something that counts as an admission!! Blimey I've got way more exciting things to admit to than that! 😀😀😀

nomoreheels profile image
nomoreheels in reply to Bon1

Hahaha me too! I 'admitted' it as they're so often considered the devil incarnate by dietary writers, even Public Health chiefs, but a relatively recent study disproves the recommendations. Natural saturated fats when eaten in moderation, which I consider I do, aren't the threat certain diet writers say they are. 😀

Needforname profile image
Needforname in reply to nomoreheels

Thanks for the reply. I think the most difficult part with diets is that I feel no different when I eat dairy, soy, corn, gluten, etc. I think barley is the only thing that really seems to effect me noticeably. I've never understood how folks are able to narrow down what foods they can tolerate so easily. I've had skin prick food allergy tests done that showed a sensitivity to soy, corn, cantaloupe, green beans, and peanut.

Combine the fact that these tests aren't all that accurate, and the fact some folks don't feel the effects from eating bad foods, how is one to tell what's working and what isn't?

For example, I went gluten free for 3 months with no change in health or pain. 1 month on paleo and no change. Maybe it takes longer, I agree. But it's always perplexed me how folks know when they are sensitive to a food. It seems there should be symptoms within a few hours usually.

Also, since the test revealed a sensitivity to cantaloupe and green beans (which don't seem to be common allergy foods), that could very well mean sensitivities to any fruit or vegetable. which complicates things even further.

When I said "I barely find myself eating with the restricted diet"... I didn't clarify, but I've since become less strict so that I can at least eat more and slowly condition my taste buds and body to accept a more bland diet.

Glad you were able to find the diet that works best for you.

LindaLegs profile image
LindaLegs

Hi Bon,

Diets don't work for me, but they do for some. :-)

I tried one in the beginning which involved eating just fish, chicken and no fruit or dairy. I lost heaps of weight when I didn't need to and when I dipped below 7 stone I stopped weighing myself. I tried it for 4 months believing that it was working wonders for my arthritis and then went on holiday and decided to have a break from it. I never realised how ill I felt on it till I started eating a balanced diet again with every delicious thing in it!

Since this I firmly believe that, for me, eating everything and anything works for me and my RA, I'm not overweight (just saying not boasting) and am much better for not being on any sort of diet.

Love, Legs X

Peecue profile image
Peecue

Whatever anyone has to say about this I think that Belief has a lot to do with it too. Whether that is beef in the food or a belief in self healing or whatever. Once read an article about the use o prayer in the improvement of Health google.co.uk/url?q=https://...

So it's a great idea and people should be supported in that Belief, providing it is not one of self harm. A diet of starvation would not be sensible, nor would deprivation of key vitamins and minerals, but leaving out certain nutrients such as grain in a diet may be of nutrient use if people have a sensitivity to it. This could be interpreted as an allergy. I have a slight sensitivity to wheat, dust and certain preservatives and when I leave wheat and preservatives out of meals I feel less depressed and I lose weight. So yes try it, but carefully. X

If you have digestive problems then the quest probably is worth the pain. But if you haven't then my take on this is that as a society we've long lost the plot with food. Because there is so much out there masquerading as food which is actually just 'fun stuff to put in your mouth', those who advocate extreme alternatives to this trend are having a field day. (Having said that about junk food, I would of course wolf down a deep-fried mars bar rather than starve).

Moderation is the key, that's my opinion. Until the late 20th century it was relatively easy to eat sensible amounts rather than binge. Something called 'cooking' was much more common too. Not in my house when I was growing up as it happens, but that's a long story. And I do understand that working hours these days make cooking flipping difficult, but I think we have lost a lot of everyday basic cooking skills.

I reckon back to basics is the way. Works for me, I have a cast-iron digestion and often feel well despite the PsA. Vegetables are generally good for human beings, lots and lots of vegetables. Oily fish has a lot going for it, pulses and nuts provide all sorts of useful minerals etc. as well as protein. Meats fine .... but in moderation. Butter and full-cream milk are increasingly recognised as NOT being the spawn of Satan. Sugar's for fun really.

When I was a kid there was not enough food (chaos at home). Soon as I left home, which I did very young, I set about feeding myself properly.

andyswarbs profile image
andyswarbs in reply to

Hidden said "Butter and full-cream milk are increasingly recognised as NOT being the spawn of Satan."

Some newspapers have had this kind of headline recently. If I was you I would check the research behind these headlines.

Gigi71 profile image
Gigi71

I have been on the Zoe Harcombe diet for 3 and half years. I find it has helped me. The diet is in 3 stages, eliminating certain foods to start, then introducing more until the 3rd stage, maintenance, or in my case adapted to me. It's low carb, high protein and low sugar. No processed food. I also found I was much better without gluten, this I think helps as I have Hashimoto's. It helped with my inflammation, I still take all my meds, Humira, mtx, pred. 5mgnaproxen b12,folic acid Vit D. Lansoprazol for a HH and more for other problems.Not being overweight helps my joints too. I still go out for meals regularly and find things that suit. I drink herbal teas, the odd cappuccino and yes the odd glass of wine. Having RA and all its mates for 32 years, it's a balance really. Don't beat yourself up about it, just see what suits you. All the best x

Bon1 profile image
Bon1

What an interesting set of replies. I think it is easy to be swayed by well meaning - but perfectly well- friends who trot out the diet speech based on no knowledge at all other than anecdote. I have felt under subliminal pressure to change diet rather than succumb to "big pharma" etc. It seems to me that there is a long learning process here, and one that may well include significant but manageable dietary changes. Thank you all very much and I hope we all live to fight another day. In the meantime I'm off for a cake a loaf and a large glass of wine! Xxxx

AgedCrone profile image
AgedCrone in reply to Bon1

I'm with you Bon1

Eiram50 profile image
Eiram50 in reply to Bon1

Pour me a glass too!

janmary profile image
janmary

There was a Horizon programme on BBC2 on Monday about a "Dr" in California (turns out he isn't a medical doctor , and has dubious claims to his PhD) . He derides modern medicine and Pharma for their profit motive , and says he can cure all sorts of disease by diet and manipulation of blood chemistry. He's made millions out of publications and 'treating' people, including cancer patients at his glorious property (not that he's motivated by profit...).

Not saying this is in any way relevant to other dietary theories which claim 'cures' for RA etc., but surely common sense should guide us? We all know what healthy food is, where 'modern' diets with junk and processed industrial foods have gone wrong, and we need to be sceptical about people who make unfounded claims and a lot of money .

"Listen to your body" , and enjoy food - at least it's something we can still enjoy.

( I think I may be channelling my Grandma...)

Witness2 profile image
Witness2 in reply to janmary

Your 'chanelling your Grandma' remark made me laugh this morning Janmary so thank you for that! Sounds like we're a pretty sophisticated and balanced bunch on this thread, especially the comments about beliefs - it's been researched and 'proved' that if you believe something is good for you it will become so, take the placebo effect for example. I believe it's taking control, believing we have some control over our health that is active in this regard, there's more research which claims depression can be the result of having no control over adverse events. I used to work with victims of traumatic events and consequently I have loads of evidence that confirms that particular research. People seem to suffer far more when they can't influence outcomes. Reminds me why I feel so good when I manage something that appears quite trivial to others! Like putting on a pair of boots by myself! Roll on summer and slip on shoes...

Mall profile image
Mall

What such refreshing and honest posts. For some time I began to feel bullied by some proponents of certain diets on this and other sites and stopped posting whenever anything about diet was discussed. Having tried so many over many years without success I was criticised for pointing this out. If folk want to give a particular diet a try then do so as some people seem to benefit but don't feel a failure if it doesn't work for you. Please be careful and don't do long term damage to your joints.

AgedCrone profile image
AgedCrone

I reckon we have enough to put up with having RA without eating stuff you don't like,"just in case".

I was diagnosed 18 years ago & have not met one rheumatology professional who believes there is one diet that benefits RA .

Obviously noshing your way to obesity isn't any good, but then denying yourself little treats doesn't help,either.

A good balanced diet does no harm ...as long as you aren't allergic to anything!

andyswarbs profile image
andyswarbs in reply to AgedCrone

AgedCrone said, "I was diagnosed 18 years ago & have not met one rheumatology professional who believes there is one diet that benefits RA."

I had my 6-month check up with my Rheumy last Thursday. Two quotes from him, "I wish more patients were like you." and "the tide is turning on diet, we have funding for 6 research projects to study diet & RA".

Frankiefarr profile image
Frankiefarr

As soon as I was diagnosed I got loads of people giving me the if you change your diet you will get better thing. It makes mad. It is in effect telling RA patients it is their fault they are ill. As the Horizon programme shows there is a lot of rubbish out there. I have a friend who believes in all these diet and alternative cures and functional doctors and swears her MS is cured. Looked at rationally though she goes in to periods of remission and then gets ill again but blames something else. If we could harness the power of belief this would be the most beneficial. She is someone who is quite obsessional and once she believes something makes the facts fit.

My hospital runs a six week course for RA patients which covers diet and exercise. But really it's about keeping moving and eating healthier to keep the weight off and lower your heart risk. Personallly I think I've been diagnosed with a crappy disease, I've had to give up wine. I'm not ready to cut the chocolate or coffee. I did do the blood sugar diet. I stuck strictly to it. It was utterly miserable, and I lost no weight or felt any better whilst and my cholesterol remained stubbornly high, other people had miraculous results. When I was nursing I was on the cardiac ward. There was a woman on there who was a keep fit addict and on a strict no sugar diet etc she had a heart attack at 53. Of all the people on the ward she took the longest to recover. Mainly due to the psychological effect of knowing you did everything, lived a miserable life but it made no difference. Everyone else was able to shrug their shoulders and say oh well perhaps I should stop smoking/give up cake.

In essence try what you like if it works great but don't let anyone bully you in to anything. Everything in moderation including moderation :)

Witness2 profile image
Witness2 in reply to Frankiefarr

Many people give us unsolicited advice because it offsets their own discomfort about our condition. A basic psychological principle. Hacks me off too so this is now what I tell them, ha!

andyswarbs profile image
andyswarbs in reply to Frankiefarr

Frankiefarr said, "It is in effect telling RA patients it is their fault they are ill. As the Horizon programme shows there is a lot of rubbish out there"

How is telling someone that diet may help translate into its their fault? Sorry I don't get the logic. The Horizon program concluded by advising people with related diseases to eat a lot more fruit & veg as I remember. So now is Horizon causing people with RA to feel it is their fault?

helixhelix profile image
helixhelix in reply to andyswarbs

Think about it..... it's not just Horizon, but everybody that says "oh if only you change X about your diet then you will get better". So the not-so-subliminal message is if only we hadn't eaten X in the first place we wouldn't be ill.

andyswarbs profile image
andyswarbs in reply to helixhelix

Hey, I have been a strict vegetarian since 1979 and I still ask myself where did I go wrong? I had thought a veggie diet was foolproof, now I feel the dairy was, in my body at least, a time bomb and the fool was me!

helixhelix profile image
helixhelix

Good post Bon1 and for once calm and balanced answers! Maybe 2017 will be the year that we can debate sensitive things on here without people getting upset.

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