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How To Cope Better With Being A Super Sensitive

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I am having yet another beginning of a migraine after spending the day with my mother and brother and Mom's caretaker and my wonderful celiac boyfriend. We went to a museum. I brought my own food. However my brother did not bring the picnic lunch he was supposed to. So I was talked into eating at PF Chang's. So I ate part of my food and part of PF Chang's. Everyone agreed to eat from the gluten-free menu except at the end the caretaker had cheesecake. But honestly that should have been OK.

I believe I am more sensitive than most, since I think they were pretty conscious about their preparations at Chang's and my fairly CC sensitive boyfriend is just fine--although he did eat different dishes than I did. All I had was the salmon, made by steaming. I had it plain with no spices and some brown rice in its separate bowl. They insisted on adding something however so I relented and said some steamed cabbage and leek were fine (I am also salicylate sensitive and can't eat most spices and many vegetables etc.).

Having another migraine again is not fine however.

Its also very possible I picked up some gluten from holding my mom's arm and hand and helping her use the bathroom a couple of times. She uses those pull on things that are the adult equivalent of Pampers. At the end of the day I had to help change her out of her pants and into a new pull on before putting the pants and shoes back on. So definitely I could have gotten something from that maybe.

I tried to be conscious and washed my hands afterwards each time, as well as before I ate at the restaurant.

I wasn't as sensitive as I am now a year and a half ago. But now that I am off the salicylates too, plus took care of my mother and brother for roughly 3 months in late 2010 through the beginning of 2011, I got glutened too many times and lost a lot of my ability to cope with cross contamination.

I was already one of those who could not tolerate using a microwave that has previously been used for heating up gluten. In 2007/08 I got ill from kissing an old boyfriend who drank distilled whiskey when I first went 100% trace gluten free. I definitely get ill from using a shared oven. I cannot tolerate using a bathroom in a restaurant where they prepare wheat items from flour. I got very ill after walking through my Mom's kitchen when they were making wheat pies in the fall of 2008. I get sick at work if I don't use a mask and we are handling fresh plaster sheetrock, vinyl floor glue, fix-all, house paint etc.

I use nattokinase and acidophilous and some salicylate safe digestive enzymes daily on an empty stomach to help heal the intestinal villi scar tissue. Lately I have also been eating a lot of my home made plain yogurt I ferment 24 hours to get rid of all the lactose, as well as to increase the probiotics. I also make home made sauerkraut using cabbage, garlic and leeks, using a whey starter from the yogurt I make. All really help me feel good. And I do recover from my headaches, sinus congestion and body aches a lot faster than I used to after getting CC'd from gluten. I also don't get the diarrhea I used to.

However these episodes of cross contamination from gluten seems to occur now at least once and sometimes twice a week. It is definitely eating into my quality of life. I seem to be stumbling along between episodes of late. My night owl proclivities naturally have increased since sleeping has once again become more difficult, despite my epsom salt baths, almost daily walks, yoga etc.

Mostly I don't even go over to my mother's place anymore since they do eat wheat there and I am bound to get ill if I venture over there 9 times out of 10. I hate the fact I have to be so distant from them, but my mother is 97 and I will not get her or others there to change their ways. I am strongly considering wearing a heavy duty mask over there if I do go over. But mostly I honestly don't want to even be there under those conditions. It is just too humiliating.

Nevertheless, even without going there or hanging out with them, I still manage to have problems. Using common bathrooms, using doorknobs and rubbing shoulders at stores to buy supplies, go to art exhibits or poetry readings or take classes where people do use gluten which can be anywhere anytime USA.

I don't want to be a hermit. What suggestions do you have??

Don't tell me I am nuts since I know I am not. Even despite all this annoying sensitivity, my health is so much better now than it was there is no chance I will ever go back to eating gluten again.

Bea

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You have my sympathy. I am also very sensitive. I think that you should do the things that you know that you have to do. Don't let people talk you into doing things that you know are not safe. You can go to a restaurant and socialize and not eat anything there if that is what is safe for you. I find it best to say that I'm not hungry rather than go into details about diet problems. It is a good idea to carry snacks and a water bottle around with you.

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You have my sympathy. I am also very sensitive. I think that you should do the things that you know that you have to do. Don't let people talk you into doing things that you know are not safe. You can go to a restaurant and socialize and not eat anything there if that is what is safe for you. I find it best to say that I'm not hungry rather than go into details about diet problems. It is a good idea to carry snacks and a water bottle around with you.

I agree. You are right. I should not have allowed them to talk me into eating there despite all. I had my food with me after all.

I also simply cannot do personal care for my mother as long as they keep feeding her gluten. Period.

Thankfully the belladonna homeopathic helped avert my migraine though I had to sleep 11 hours afterwards. The home made yoghurt seems to be soothing my innards meanwhile, as well as taking co-enzyme B vitamins, nattokinase and acidophilus earlier on an empty stomach to counteract inflammation and scarring of the villi. I plan to go for a walk soon. So it has been a relatively quick transit.

Thanks for the suggestion and encouragement.

I have to remember in future not to depend on my brother to do what he says he will in preparing for a social event like a picnic. He flaked out as usual without letting me know about it. I believe he is getting glutened constantly over at our mother's and it is affecting his mind. Nothing I can do or say to him since he thinks he isn't as sensitive to gluten as I am. All I can do is protect myself and expect nothing from him that is real and enjoy him for the rest of who is is when possible.

In future if we plan a picnic I will do all the food preparation. Harsh but true, and a lot easier than having to worry or get hammered once again. Less expensive too, since my bf was the one that paid for the meal for 5 people over at PF Chang's...

Bea

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Bea, I am sorry for your struggles. And, I have no answers for you. But, I can see that you have made a difficult choice between your health and your visits with your 97 year old mother.

Your time with your mother, certainly is limited at her age. Perhaps you could use a mask and visit with more frequency. :) Regrets can't be undone. ;) (I lost my parents at a very early age.)

And maybe a clinician can be helpful in coping with your severe issues. I can only assume it's quite a struggle. :)

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Bea, I am sorry for your struggles. And, I have no answers for you. But, I can see that you have made a difficult choice between your health and your visits with your 97 year old mother.

Your time with your mother, certainly is limited at her age. Perhaps you could use a mask and visit with more frequency. :) Regrets can't be undone. ;) (I lost my parents at a very early age.)

And maybe a clinician can be helpful in coping with your severe issues. I can only assume it's quite a struggle. :)

Thanks Lisa. I am thinking of seeing a Naturopathic doctor to get testing done in case some of my hormones are low or something else is off and thus exacerbating the situation.

Meanwhile I don't feel that huge a loss with not seeing my mother that much although its not totally easy either. Going back on gluten was her choice. I had taken her off of it for a couple of years after I found I was celiac, as was my brother with Down's and eldest sister. Plus my mom was starting to have fainting spells and lose her mind as well as suffering from dry mouth and eyes and joint problems. My sister the nurse however insisted she be back onto gluten and my mother's doctor agreed given my mother's age (it being her prerogative). So I had to stop being there for my mother or else personally fail in life as well as health.

Now of course my mother's memory is almost completely gone and she is not very present. Previously I did home care of her for roughly 3 years. I have also worked for her for over 15 as a property manager so I think I did my duty and got to know her pretty well. She was always the scientist, and not very emotionally there. She was quite abusive as well as neglectful as we were growing up. I talked to her about it and resolved a lot of issues over a number of years and we gradually became friends of sorts. Certainly I no longer carry enmity for her. After a while you just have to accept people as they are. It is not worth hating anyone forever. And I could see how my mother might be the way she is. A lot easier of course to relate to as an adult than as a dependent child.

But this gluten thing has been her own choice. She was mostly off gluten herself while she was growing up at her mother's behest. She was even part of an early study done in San Francisco the results of which were subsequently buried by the doctor switching his concerns to the war effort in WWII. Mom meanwhile went off her diet completely when she left home.

In my case I was diagnosed as being celiac as an infant and put back onto gluten when I was five since by that time it did not stop me from completely growing as it had. However it interfered with my good health. She said nothing of any of this until after I finally figured out I had celiac some 4 plus years ago and had already suffered from ill health most of my life despite my best efforts to figure out what the heck was going on. Taking care of her and my eldest brother again after he had an accident last year seems to meanwhile put me back some years and I have to heal my villi all over again. I think in large part this is why I have become so over-reactive.

So, yes, none of this is easy. However I think I can only do so much as far as family propriety is concerned. I have to watch out for myself since its clear no one else will, or at least very few--and those few are not part of my immediate family. Thankfully I have a wonderful boyfriend and a few good friends and a meaningful life despite all. I am glad to live and more than live, really be alive as an artist and writer and healer and general all about human being who cares about the earth and the well being of others.

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Tell me more about the artist, writer and healer in you. I'm sure that much of that can be healing in itself to you, as well. :)

Could work be an issue for you? You mentioned dry wall and construction material?

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Tell me more about the artist, writer and healer in you. I'm sure that much of that can be healing in itself to you, as well. :)

Could work be an issue for you? You mentioned dry wall and construction material?

Hi Lisa,

Thank you for your interest and concern.

Yes I am a long term artist. Have been a ceramic sculptor and am now relearning how to paint--which is finally starting to sing to me, so to speak. And yes it is very healing for me to create in a variety of mediums.

I had quit using pastels as well as painting years ago due to problems with being sensitive to the paint. Now however I discovered I am fine as long as I just use latex free gloves and avoid pastels and oils. A lot of the paint, especially any that have dyes, is full of salicylates as well as being poisonous. Supposedly I am sensitive to gum arabic as well. Lately I have been exploring acrylic on canvas.

I used to win awards for my pastel painting as well as acrylics and ceramic sculpture. So I am hopeful I will get an audience for my work once again.

I developed a style with pen and ink as well as ceramic sculpture in the meantime that I am using also now with the paint, something I could not see how to transition in the past. I got a great deal of attention in the past at various galleries for my ceramic sculpture, but of course ran into a lot of problems due to my then as yet undiscovered underlying physical limitations.

Of course I didn't know it for a long time but my problems stemmed from from the celiac and salicylate sensitivity as well as a serious back injury I had from when I was a kid. I had blanked out the injury since it was too awful and my folks did nothing to help me out with it at the time except to deny it. Previous to learning the truth about all that (a slow process as you might imagine), I did a great deal of therapy, including co-counseling, which helped me learn to deal with and heal a lot of issues.

I am also back at life drawing from the nude, so who knows what will happen with that. I do love working with the figure!

Soon I will have my ceramics studio finally going again at my boyfriend's. He's letting me use part of his garage. Already we have the electrical put in plus we already built a storage shed for some of his excess stuff. As is, I am slowly putting it all together. Despite setbacks, I am a builder and planner. I might get down now and then, but not for long even though at the time it might feel like it will never pass. I think part of that of course is the gluten talking. It is a natural depressant it turns out.

I have also been a poet for years. Of late I am starting to explore memoir writing. I am thinking of combining it with stories and maybe self help writing concerning celiac and healing, these being subjects I have been working at for most of my life one way or another.

I am a long term self taught herbalist, but now have had to go off most herbs and even spices due to the salicylate sensitivity. Am now exploring homeopathic remedies. And again diet--now beginning to use home made fermented foods as well as low salicylate and gluten free of course. I have always loved cooking and baking. So ironic I had to quit a lot of it. But now am finding new ways to create tasty food despite all, as well as remedies to combat my various difficulties. My boyfriend is grateful since it is helping to heal him too as well as make him a lot stronger.

So even though I have been glutened quite a lot of late, for instance, my recovery time has vastly improved. I now tend to snap back in a day or two, whereas when I started being completely gluten free it could take weeks to recover. However I have my moments of frustration, like when I get glutened way too frequently! As I have done recently.

I was a poetry and art organizer up until a couple of years ago when I decided to use my abilities to make some kind of healing business for myself. So now I am a fledgling hypnotherapist after studying hypnotherapy and EFT for a couple of years. I intend to combine my abilities with shamanic workshops and the like. As well as ones focused on creativity, foods and healing. And of course the writing. My next focus on that will be to start participating in some New Age fairs to round up some likely clients. My plan is to help create self empowerment for the client.

As far as money goes I have been making a small living as a property manager renovating and renting out old turn of the 20th century houses owned by my family in south San Jose for some years now. I am basically a Jill of All Trades. However with this gluten sensitivity, my work, while pleasurable in many ways, is sometimes proving to be dangerous for me. My plan is to segue out of it with the hypnotherapy business. What with these recent frequent glutenings though, I may have to do something more drastic if I can't keep on avoiding the gluten better than I have.

For now though I am thinking of seeing a Naturopathic Doctor to have my various hormones etc. tested just to see if there is something there I should know about but am now missing that is making me more sensitive to gluten than I otherwise would be.

And yes, tonight I finally feel way better after taking another dose of 30x belladonna homeopathic. It helped me last night, and I decided to take again it later this afternoon since my belly was very sore. Am glad I did. I did some sleuthing on the Internet about it, and it may help me sleep better overall since its also a specific for folks with nerve problems like myself and those with a history of nephritis and migraines. Kidney nephritis has also been one of my underlying problems even though fortunately it has not shown up for quite some time due to all the herbs I took for it for years and years as well as attention to diet. The homeopathic dose is very low (i.e, dilute), so all that is left in it is the energy. Otherwise belladonna would be the opposite of what I need. But that is the way homeopathics work--opposite what one would normally think since it is an energetic thing instead of medicinal or herbal. As well as very specific for the person dependent upon their symptoms.

So yes its not easy, its complicated for me like it is for a lot of folks here. But do not fear, I have my methods of resurrecting myself. I do believe sensitive people often have powerful abilities and talents that help balance out their difficulties. I was just wanting to vent I guess as well as see if any other sensitives here had any useful suggestions I could use -- or just drop by to commiserate.

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You are quite wrong. This is only a homeopathic dose, and an extra dilute one at that. All that is left is the energy of the plant which we know is there by how it affects certain people, as well as its history of dilutions and percussive shaking in water or some other medium. There is otherwise nothing else to detect. One is not affected by it unless one needs it. It works by the laws of Similars rather than as a standard medicine or herb. Your body reacts at an energetic level in a way that helps one heal. That is how homeopathic remedies work. Especially this one at a 30x dilution.

Believe me, given how sensitive I am, I wouldn't use it otherwise. It actually has been a solution to my dilemma since most AMA medicine are too strong for me and now I am no longer able to use much of any herbs since I am very salicylate sensitive--which most herbs have quite a lot of in them naturally. By diluting the substance to an infinitesimal energetic level it resolves my problem.

Fortunately I can now tolerate a little lactose so I can use the small pills. I would never consider using the normal alcohol tinctures due to the likely gluten and/or salicylate base of the alcohol itself.

Bea

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I'm not by any means an expert in this stuff, but with all the sensitivities you obviously have, I'm thinking heavy metal or other toxic overload. But perhaps you've fully explored that already. I know you do have a good handle on natural medicinal stuff (I despise the term "alternative medicine", as it makes it sound like it's "when all the drugs fail". IMO drugs are the very last alternative resort, though I'll still never knowingly ingest them).

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I'm not by any means an expert in this stuff, but with all the sensitivities you obviously have, I'm thinking heavy metal or other toxic overload. But perhaps you've fully explored that already. I know you do have a good handle on natural medicinal stuff (I despise the term "alternative medicine", as it makes it sound like it's "when all the drugs fail". IMO drugs are the very last alternative resort, though I'll still never knowingly ingest them).

[/quote

Dear Rice Guy,

That is a very good thought about the heavy metals etc.! Thanks for reminding me. I am going to get tested out by a Naturopathic doctor next week. I will be sure to bring up heavy metals and environmental toxins.

I know at one point it was pretty bad. 30 years ago my hair actually tested as having a lot of lead in it at the Seattle Center expo. Ten years later I also had my silver amalgams taken out and felt really weird afterwards for quite a while. I even fainted and broke a couple of teeth! As a child I reacted quite badly to the amalgams right from the get go. I had terrible gum boils as a result of them plus always woke up with the taste of metal in my mouth up until I had the amalgams removed when I was nearly 40.

All along since my early twenties nearly 40 years ago I used detox herbs for decades to protect my kidneys and liver so its likely I got rid of a lot of it. However the deal is that with my salicylate sensitivity that got a lot more full blown these last 5 years, it makes detoxing å lot more difficult since the sulpher pathways don't work adequately. Plus a great many foods have become toxic due to their salicylate content. I now avoid medium to heavy salicylates. However for a long time I didn't since I didn't know any better.

I took a lot of calcium pills and capsules over the years, which as it turns out I could not metabolize very well since my bones and teeth continued to be soft up until I went off all trace gluten. On the positive side, its likely the calcium helped chelate a bunch of the nasty stuff out.

Around 12 or 13 years ago I used "Dentox"homeopathic for removing heavy metals -- inspired by a friend who was getting his mercury silver amalgam fillings taken out. It was too much for me however after a couple of months of that. Totally blew me out.

So given my work environment, past sensitivities to metals plus dealing with old plumbing, it really is likely. It could very well be making me a lot more sensitive to gluten than I otherwise might be.

So--good call! Thanks. I will have the doc check that out as well as my aging hormones...

Of course, what I can do about it, I wonder. Maybe take a lower dose of something similar to "Dentox"?? And drink tons of water and make lots of parsley/celery/ice burg lettuce smoothies (all salicylate safe veggies)??

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I wonder, since many compounds in nature have complimentary/counterbalancing compounds to them, if there isn't something you can use to reduce the salicylate activity?

Don't know if you can use pectins, but I've read good things about apple pectin, citrus pectin, etc for pulling heavy metals and other toxins out of the body.

Hope you get true improvement soon!

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I wonder, since many compounds in nature have complimentary/counterbalancing compounds to them, if there isn't something you can use to reduce the salicylate activity?

Don't know if you can use pectins, but I've read good things about apple pectin, citrus pectin, etc for pulling heavy metals and other toxins out of the body.

Hope you get true improvement soon!

Hi Rice guy,

I do eat peeled ripe pears and peeled golden delicious apples regularly to help out my liver etc. Which is fantastic really since for a long time I could not handle eating any fruit at all. So this new condition is a blessing. I also drink a bit of nettle tea which is also detoxing for the liver and is actually an antidote for salicylate sensitivity--unlike most other herbs it seems.

I used to take apple pectin but can't now since its unlikely they either peel the pears or just use the kind that is low in salicylates like I do. I am allergic to most citrus and have recently discovered most of it is high in salicylates except for green limes--so same problem with that.

Nevertheless, your idea is sound. I will look to see what I can use. Maybe cleansing clays?? Internally and/or externally? Slow but steady... Soon I will be creating with clay again too since I am a ceramic sculptor. We will be building my kiln area soon. And yes I have always protected myself from the heavy metal and otherwise toxic colorants, using mask and gloves and keeping the kiln area outside. I earned long ago that doing otherwise was just too dangerous for me.

Meanwhile I do eat a fair amount of parsley these days (which is allowed on my diet). I think maybe the brown rice and celery etc. helps too.

I see my new naturopathic/homeopathic doctor on Wednesday. She is young but sharp. I cross my fingers she can help me. If nothing else, the tests she does should give me a few clues.

Like you suggest, I have learned a lot about diet and natural healing over the years. Really saved my life from an untimely death back in my mid twenties and I am certain many other times too. I often would read herbal and medical texts to help me get to sleep at night. I went off most gluten by age thirty. It took forever but now being off all trace gluten these last 4 years has helped me immensely and now this low salicylate diet too. So I am progressing.

I have thought of going back to school and actually learning the math and science. I seem to have a head for it but as a young adult I could not do the math due to dyslexia with numbers. I was too toxified all the time if you get my drift. I originally focused on philosophy and political science and then got into poetry and visual art and organizing events as well as now these last many years being a property manager and Ms Fix It. I seem to be a Jill of All Trades.

For now perhaps my best bet on paying the Universe back for allowing me to follow these hunches and more than just live but have a full life despite all, is to write about my Journey. Seemingly a Herculean task given all the twists and turns. However I am starting to get a handle on it at long last using a book on how to write about one's life as a guide. I also am gearing up to go to various fairs to feature some of my art as well as my skills as a hypnotherapist and EFT (Emotional Freedom Technique) practitioner. Maybe this new breakthrough in health I am anticipating will be the final hurdle so I can follow through on these and other endeavors more energetically.

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I've just been diagnosed as a 'super-sensitive' Celiac (I hope - my doctor, up to this point, thought I had refractory sprue). But since I've eliminated Udi, BRM and Glutino products, I have gained almost 5 lbs. He was very happy to see that. However, he is testing me for lactose intolerance (I eat a LOT of dairy). What next? Soon I'll be eating nothing but gravel. And so it goes.

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But since I've eliminated Udi, BRM and Glutino products, I have gained almost 5 lbs. He was very happy to see that. However, he is testing me for lactose intolerance (I eat a LOT of dairy). What next? Soon I'll be eating nothing but gravel. And so it goes.

Yeah! I'm glad you are doing better! I can't eat any of those things either and I still find enough to eat without eating gravel. :)

You may help your doctor and some of his colleagues know how to help other super sensitives. Good for you.

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Yeah! I'm glad you are doing better! I can't eat any of those things either and I still find enough to eat without eating gravel. :)

You may help your doctor and some of his colleagues know how to help other super sensitives. Good for you.

It is good to let the docs know we sensitives are around. I think maybe there are more of us than many folks are aware of. I count not only my boyfriend and myself, but also our friend and my co-worker Graeme.

I never have done well with prepackaged gluten-free foods. Prepackaged flours are difficult all in themselves, as I recently discovered. If I mill my own rice flour however I seem to be just fine. If I make a cake for instance I also avoid things that are made from corn like xanthum gum which is in practically everything. Instead I use arrowroot flour as a thickener. I get it from an herb store which says its herbs etc. are all gluten-free, and it appears to actually be so. Previous to fairly recently I generally avoided any grains at all except for well washed brown rice we cook ourselves.

I am off the lactose right now too. I am suspicious of both the lactose in the yogurt and the amines in it to tell the truth. I have had a real rough patch these last two weeks with inflamed kidneys and bladder seemingly from too many exposures to gluten CC in a row. Thankfully I got over it by using a homeopathic and a few herbs I can still tolerate now and then. This was then followed by a migraine after I had eaten some bad yogurt and some good sauerkraut, and then another migraine the next day after regular store bought yogurt. All of which makes me wonder if my CC to gluten was made worse by all the home made sauerkraut and miso I have had these last two months...

Its too early to tell yet, however it seems like maybe my ears etc. are improving, no longer quite so red and flaky by having more of a low amine diet along with no high to med. salicylates and of course no gluten.

Thankfully I can eat a few easier to digest beans now--as long as they are well soaked then brought to boil 3 times while changing the water each time to get rid of the indigestible carbohydrate, and then simmered for another 2 hours... Enzymes helped at first, but now it seems I no longer need them.

I probably will begin to tolerate a bit of chicken again now that the inflammation in my urinary tract has been gone a week.

So no, even though its more trouble to discover what I can safely eat, discover it I have and do. And a lot of it is pretty tasty despite all...

Its complicated though I have to admit. I still need to do my stool tests and blood test this coming week. It all got delayed by the above health events. I am hoping my doc can help me discover if there are other underlying factors contributing to my sensitivity since I don't want to be limited by all this.

Meanwhile I have developed strategies to deal with my current state like wash my hands a lot and always bring my tote of food cooled by blue ice. And even when I go out to do group drawings, I use my own equipment; and nowadays I always wear gloves when I paint.

Bea

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