Tag Archives: living with eczema

Eczema and its connection with books, music and meditation

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It has now been almost three years that I have been writing about our family’s experiences of dealing with eczema. These are experiences that have shaped our life and changed it irrevocably as most chronic conditions inevitably do. Most of the times we do not have a choice about these changes and we can only let events unfold themselves as they occur. But we do have a choice as far as our responses are concerned. We can choose to accept these changes and deal with them or we can choose to rail at them and complain about them. While it is far easier to do the latter we chose the former path and we are only now seeing the positive outcomes associated with them. But dealing with any kind of lifestyle change is not easy, especially ones which are associated with health conditions.

Stress, anxiety and self confidence

nio pensativo mirando el mar

Since I am my daughter’s primary caregiver, I spend a lot of time focusing on her bathing and moisturizing routines, two crucial aspects of managing eczema. But I also spend an equal amount of time or even more on something that we don’t get to see. The emotional scars that are left behind in a child struggling to cope with a severe health condition day after day, month after month with no end in sight. The emotional pain of living with eczema, the erosion in self confidence linked to the constant scratching and physical rashes on the body, the frustrations which can build up due to the restrictions in terms of activities and diet to name just a few. The stress and and anxiety that a child experiences if not managed properly with due care and attention, can lead to many more complex issues once the child becomes an adult. And even though we do not realise it always, a child has his or her own share of stressors which may seem trivial to us but are actually very real and important to them. This is not something we can take lightly or ignore, this is something akin to a garden where the flowers and the trees have to be tended to and given a great deal of attention while they are still growing.

I had written a post earlier about how you can help your child cope with eczema and you can read about it at https://eczema-anindianperspective.com/2013/11/19/beauty-is-not-just-skin-deep-helping-your-child-cope-with-eczema/

This post takes that topic even further based on our own experiences since then and expands on that topic.  For us this aspect of managing eczema became even more important after our daughter’s catastrophic reaction to her medication’s side effect in 2013. She battled a life threatening infection and was hospitalized for a month. I have written about it in my post https://eczema-anindianperspective.com/2013/10/27/the-tough-get-going-part-2/

She also lost all her hair in a few days and had a tough time in school once she resumed a couple of months later. Her school discussed with and sensitised her classmates about her condition and sudden change in appearance including lack of hair.  But there were a few children who would tease her about her lack of hair and her appearance. Even outside school she became the subject of many stares and comments due to her physical appearance. It became painfully obvious that there would always be some people who were not sensitive enough to other’s sufferings and I would not be able to protect my daughter from such people the way I would have liked to. I decided then and there that I would ensure that I would teach my daughter to find the strength that was already within her and teach her ways to cope with such people. I would try and make sure that she would not lose her self confidence and self respect and that she would know that she had a choice. A choice as to how she would react to such people, a choice as to how to deal with difficult situations and a choice to be happy.

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It is really empowering to learn that while we cannot control what other people think and say we have a choice as far as our response is concerned. The stress associated with living with any chronic condition like eczema is usually very high and very real and I knew I had to figure out ways to manage it. Books, music and meditation became my tools to achieve this. Of course, all this did not happen overnight. It has taken a lot of research, time and effort to figure out what worked for us and we are still a work in progress. But what pleases me the most is that I can see the difference all this effort has made in our lives. In this post I would like to share in some details all that has helped us.

Books are the quietest and most constant of friends; they are the most accessible and wisest of counsellors, and the most patient of teachers.

Boy, standing on a pile of book reaching for a star

First I would like to mention some of the books that have provided not only my daughter but all of us with a lot of inspiration and encouragement. These are books which have simple story lines covering various topics like gratitude, happiness, strength, acceptance, compassion to name a few. I have been researching and buying such books for the past few years but a few have won a big place in our hearts. These are books I read to both my children again and again and they love to hear it every time. They are available on Amazon India (amongst others) and are easiest and most convenient to just order online. There are of course many many such books available if only one looks for them. The ones mentioned below are some of our family favourites.

  • Freckleface Strawberry by Julianne Moore- it is about a 7 year old red haired girl who has a face filled with freckles. She has to put up with all her friends calling her Freckleface Strawberry. It is a beautiful story about a girl who finds the strength to accept something that really makes her life difficult but ultimately she accepts it and then goes on to lead a happy life inspite of it. This book is the one that really helped my daughter accept her skin condition since it dealt with a similar problem.
  • Stand Tall, Molly Lou Melon by Patty Lovell- this is another book about a very short and feisty girl who has buck teeth, has a voice like a bull frog. She is worried about moving to a new school but her grandmother encourages her to be brave by just being herself, smile and sing loud and clear. She does just that and stands up to a bully in her school and wins a lot of friends eventually. It is a beautiful book about being yourself and real courage.
  • What Does It Mean To Be Present? (What Does It Mean To Be…?) by Rana Do Orio- this book is about the meaning of being present, paying attention to each and every moment. In a simple but profound way it teaches the importance of enjoying each and every moment as it comes and some key values like compassion, kindness
  • How Full Is Your Bucket? For Kids by Tom Rath and Maurie J Manning- This book is about a boy and a fictitious bucket which hovers above his head just as he was told by his grandfather. He feels happy when the bucket is full and feels sad and miserable when it is empty. He soon realizes that everyone around him has a bucket just like his and that during the day either the bucket is fills up or it is becomes empty. He also learns that by helping to fill another person’s bucket he also fills up his own. This book teaches us in a very simple way the importance of self esteem, helping others and taking responsibility for one’s happiness.
  • Zen Shorts (Caldecott Honor Book) by Jon J Muth- This is a gem of a book which has three short and simple stories each teaching us a different life lesson. One story teaches us about happiness by living in the present moment, another is about letting go of the past and the third one is about accepting change and uncertainty as being an intrinsic part of life. These are supported by beautiful illustrations and is a superb addition to one’s list of books to read to children

“What lies before us and what lies behind us are small matters compared to what lies within us”

wellbeing and healthy lifestyle concept, yoga background

Meditation, being a very ancient art is also one which is synonymous to our culture. Sadly, many of us seem to have lost touch with it and all that it has to offer us. The good thing is that it is once again gaining prominence not only in our country but around the world. There are different types of meditation practices that one can follow but the one that I will be discussing here is called “mindfulness meditation”. I find this type of practice to be very child friendly and flexible both of which were major requirements for me. Mindfulness is that art of paying attention to the present moment in a non judgmental and friendly manner. Over time the practice of mindfulness can help us look within to find the strength in times of trouble, lower our stress levels, tap into our inherent compassion and also show us how being grateful is the key to real happiness.

I use a mix of simple formal meditation practices and informal practices which I try and weave into our daily routine. Of course, when one slips up, you have to simply start off from where you left off without judging yourself or any one else for the same. This is one of the key things that meditation teaches us over a period of time, the practice of paying attention which by nature should be non judgemental. It enables us to accept ourselves as we are warts and all and is the first step towards self awareness.

I use some music CDs with guided meditation practices and a few books to incorporate some elements of mindfulness into our daily lives.

  • The CDs that I use are
    Sitting Still Like a Frog: Mindfulness Exercises for Kids (and Their Parents) by Eline Snel – it is a book and CD combination which works very well for us. The book is for the parents/adults to get a sense of the meditation practices and serves as a guide to the guided mediation. The guided meditations are simple and easy to follow and should ideally be done together as a family. There are meditation practices for different moods and problems and are very easy to follow by children on their own as well. You can also buy the one that is available for teens.
  • Planting Seeds: Practicing Mindfulness with Children by Thich Naht Hanh- This is from the practice run by one of the most well known Minfulness teachers in the world called Thich Naht Hanh. It has a combination of music and guided meditations along with a book to support it. This book discusses in details the impact of mindfulness in different aspects of life and how to bring more compassion and peace to the world. The practices that we love the most are Pebble Meditation and the Deep relaxation.
  • Planting Seeds: Practicing Mindfulness with Children by Amy Saltzman- these are a set of guided meditations through short stories which will appeal to all children. Again, these deal with various feelings and emotions with the help of simple breathing exercises. This is available in book form and on streaming apps like Spotify (not available in India at the moment).
  • CALM for kids- this is one of my favourite mobile phone (and desktop) apps for meditation. They have now launched a section for kids where they have guided meditation practices through lovely stories.
  • Insight timer for kids–  a new app that I have started using recently has a huge variety of guided meditations by different people and is quite useful in its variety.

A couple of books that I must mention here are on mindful parenting. They have been a valuable tool in giving me practical advice and ideas about incorporating mindfulness into our daily lives in simple ways. It has a tremendous impact on our lives both in terms of health and happiness and this has been confirmed in various scientific studies. The two books that have struck a chord with me are

There are many more such books on parenting and mindfulness, these are two that have really made a difference to our lives. These books not only cover the basic concept of mindfulness, they also offer practical ideas about how to incorporate into our own lives including our parenting practices. There are beautiful formal and informal practices in the books which are very child friendly and can be enjoyed by the whole family.

Music is the rhythm; art is the passion and life is the subject

Piano keyboard background with selective focus. Warm color toned image

Music can play a therapeutic role in addressing various physical, social, emotional needs of a person. It can play an important role in managing chronic eczema as well by lowering stress levels and providing solace in times of emotional turmoil due to this condition. Any kind which can help one relax will do. Music is used by many as a form of therapy but we do not need to be trained as one to use is in our daily lives. The right kind of music can inspire us, lower stress and generally contribute to our overall wellbeing whether it is listening to music, playing it in some form or singing songs. The music CDs for meditation that have been mentioned earlier work very well in this aspect.

Girl paints a coloring book for adults with crayons

Art is another form of therapy which is widely used to deal with stress and anxiety. And it is one of the best suited for children as it can enhance creativity at the same time. Research also shows that certain shapes and patterns like mandalas are more helpful in reducing stress than others. There are now a lot of Mindful colouring books available which are meant for this purpose. You can use them to spend some quality time with your child and at the same time switch off from daily stresses and focus on a simple but pleasurable activity.

A conversation is so much more than words: a conversation is eyes, smiles and the silence between the words

Close-up of family discussing on sofa

The simple art of conversation and dialogue is an amazing way of helping your child cope with the stresses of living with eczema. Conversation was something which was pretty mainstream in our earlier generations but is now being overshadowed at times with our hectic, busy schedules and digital domination. Switching off from the digital world from time to time for the family as a whole is one of best ways to enable this. I am yet to implement a digital curfew but I intend to from time to time starting with a few hours on weekends.

I struggle myself to find a balance at times and make sure that we have regular chats from time to time as a completely family or even one on one when required. Many a times during our heart to heart chats before bedtimes my daughter and my son have shared their worries, problems and even their triumphant moments. We have come to know each other’s way of thinking, shared some of our worries and our conversations have often helped my children calm down with the simple act of listening.

Yoga  and others

There are many more such ways in which you can help your child and yoga is the one which comes foremost to my mind. This is something that I have not really been able to explore much till date with my children but I wanted to mention anyway. I plan to integrate this practice as a part of the bedtime routine in the near future. You can find out about some child friendly yoga classes in your neighbourhood plus there are a lot of online options as well nowadays. These include websites like gaia.com with streaming videos as well as those offering digital downloads for those unable to join a class for any reason.

There are also some lovely books which offer simple exercises which can be done anytime or before bedtime to promote restorative sleep. There are of course many other books that are available for children.

When the mind, body and spirit work as one, anything is possible

mind, body, spirit, soul and you

You may have been wondering why I have chosen to write so much about mindfulness, meditation, yoga, emotional counselling with regards to eczema when most of us are used to dealing with the medications and the treatments. Medications and treatments of course play a large role in dealing with eczema and we are familiar with most of them.

What I have learned over the past few years of dealing with my daughter’s eczema is that true healing is a combination of treating the body along with mind and spirit. My daughter would not be where she is today in terms of her positive attitude towards life and a cheery disposition inspite of struggling with severe eczema had I not placed equal importance on all three aspects. I have learned and I am still learning from many others who have done just that and much more and inspire me to carry on.

As you would have also realized after reading my post, I am very passionate about books and they have been of immense support for us. They play a very important role in our lives in managing eczema and I wanted to share it with you. I have also had the privilege of writing a book with my daughter’s dermatologist Dr Amrita Talwar this year called I Have Eczema… So What? – Inspirational story book for children. I have mentioned it earlier as well but wanted to mention it in this context. The book is a beautifully illustrated children’s book about a 9 year old girl with eczema, who faces all kinds of emotional and physical problems. She eventually learns to manage her eczema and cope with it in a very positive manner with the help of her family’s love and support.

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The book is available at some Crossword Stores and online at amazon (physical and ebook format) and flipkart (physical format). You can buy it at

 

 

I hope that some of the things that I have mentioned in this post will be useful for you and your family in managing your child’s eczema.

May we all find the “strength to endure the pain, the wisdom to think things through and the courage to face our fears” …

It’s finally here! My first book “I have eczema….so what?”

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Invitation - eczema Book launch

I had mentioned in my last post that I was writing a book for children suffering from eczema. This is in conjunction with my daughter’s dermatologist, Dr Amrita Talwar who is a coauthor of  this book. Both Dr Talwar and I realised the need for a book which is meant for children who have eczema since there are hardly any resources for them even though there are many for adults.

It gives me great pleasure to introduce you to Maya, the 9 year old protagonist of my book “I have eczema…so what?”

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9 year old Maya from “I have eczema…so what?”

The book  is written through the eyes of a 9 year old girl called Maya who suffers from eczema. She has to deal with various issues like the physical discomfort and pain of living with eczema, social and schooling problems like isolation and teasing, emotional upheavals and even stress. This book would first and foremost help children to understand and learn about eczema in a child appropriate manner. Maya’s family rallies around her and ultimately as a team they manage to help her cope with eczema. Maya and her family are thus able to make eczema a part of their lives so that it does not completely overshadow everything else. It is a book for families as much as it is for children suffering from eczema.

“I have eczema…so what?” is ultimately a story of courage, love, teamwork and the strength that comes from within by being a part of a loving and supportive family. It is based on our experiences of dealing with our daughter’s severe eczema, her trials and tribulations and the strategies that we developed over the years to deal with it.

Book launch details

Date: 21st of April, Thursday

Venue: Crosswords, Kemp Corner in South Mumbai

Time: 6 pm onwards

Individually we are one drop, but together we are an ocean 

For those of you who have been following my blog will know how far we have come since I first started writing. It all started right here, with this very blog. This is where I honed my skills and which has now culminated into my first book. However, the book is a result of teamwork as is usually the case.

I am blessed to have Dr Amrita Talwar as my coauthor and mentor for this book, Ms Preeti Vyas (Fun Ok Please) as my publisher and Ms Shraddha (Happy Fish) as my illustrator. Amrita has also played a key role as the person who encouraged me to write about our experiences in the first place starting with this blog. Thank you Amrita for always encouraging and believing in me! 

Family, a group experience of love and support

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My inspiration is of course my 9 year old daughter who faces her situation every day with a smile on her face, manages to get up every time she falls and shows us the what true courage and grit is all about. My husband, my 5 year old son, my mother and our immediate family have all played their critical and immensely supportive roles in enabling us to deal with eczema as a team. This book is a result of this support as I have drawn my own strength from my family and friends. In fact, I have not only been able to act as a primary caregiver to my daughter but I have also found the courage to share our experiences through my blog posts, articles and now this book. Words are really not enough to express my gratitude…but I need to say them anyway, so a big THANK YOU!    

Incase you are interested in this book and/or joining us for the book launch, please get in touch with me via-

email at eczemaanindianperspective@gmail.com,

twitter at @eczemainindia 

facebook at https://www.facebook.com/eczemaanindianperspective/.

 

 

 

 

 

 

 

 

 

 

 

Green power!! (greener alternatives for laundry and cleaning products especially for eczema and sensitive skin)

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I am publishing an updated my article on ecofriendly and natural alternatives for laundry and cleaning needs at home. It is a primer for those of you who are looking for eco friendly and natural alternatives for a cleaner and greener home.

Cleaning word cloud concept

I find that it is important for me to highlight the fact that there are harmless, natural, environment friendly laundry, dish washing, and cleaning alternatives which are available to us. In this particular post I have focused on the laundry and household cleaning agents that we use (In subsequent articles I would be focusing on the impact of our food habits and diet). While most of us do all that we can as far as moisturizers and bathing products are concerned for children who have eczema, some of us are not aware that the regular dish washing, cleaning and laundry products used in a household can also have a large and harmful effect on sensitive skin and allergy/eczema prone children (and adults). In India especially, eczema and other allergies are a recent phenomenon as compared to the West.

While I was happy using regular detergents and cleaning products for my household cleaning and laundry needs, I was particularly happy using highly fragrances and foaming cleaning/laundry detergents and thought that all products which were labelled as “child/baby friendly” and “gentle on the skin/clothes” actually were child friendly and gentle on the skin. But after a bit of research I was quite surprised to find that quite a few of the products that I had been using all my adult life were cumulatively doing more harm than good to my entire family and this was especially true for my daughter who has severe eczema. That is when I started looking for alternatives and was pleasantly surprised to find out that there are much better, natural, harmless and environment friendly options which might also be much more economical for regular use. Now, over the past couple of years in my quest to manage my daughter’s severe eczema, I have made a lot of changes in our lifestyle which includes skincare products, laundry products, dish washing products as well as other household cleaning products.

Natural Non-Toxic Cleaning Products

Since I am sharing my own personal experience in using these products, I have restricted this post to products which are available to Indian consumers only. Also, please note that I am going by the information provided by the manufacturers as far as the ingredients are concerned, certifications as mentioned and in some cases I have taken into account the product reviews by other users. 

 All that foams is not soap!

 Soaps and detergents are two different things but are often mistaken to be the same. While soaps are traditionally made from fats and oils and have been around for centuries, detergents are usually of synthetic origin and is a much more recent phenomenon. Detergents react less to minerals (found in hard water) than soap and hence is now the preferred choice for most.

soap-bubble-kidsstoppress

  • Sulphates are surfactants which are used in a wide range of products especially laundry and dishwashing detergents in order to reduce the surface tension of water thereby improving its ability to wet things and remove the dirt.
  • Other products where Sulphates are found are bathing products like shampoos, shower gels etc, toothpastes and even baby care products and it provides the “foam” that we are so used to.
  • Nowadays most of the skincare and laundry detergents usually contain the gentler Sodium Laureth Sulphate (SLES) plus a host of other chemical fragrances and preservatives and not the much harsher surfactant Sodium Lauryl Sulphate (SLS).
  • But even SLES is a chemical which is harmful for sensitive skin and it is just one of the many chemicals which are present in any cleaning/skincare/laundry products.
  • The other common chemicals are preservatives like Parabens (Methyl, propyl, isbotyl to name a few) and Methylisothiazolinone fragrances which are mostly made of synthetic chemicals and synthetic colours,  found in many baby and child care products.
  • Many organic and natural products have preservatives like Parabens and foaming agents like SLES unless stated otherwise. Hence it is imperative while buying any such product to check the ingredients listed carefully no matter what the label says in the front. The good thing is that there are detergents (laundry and cleaning purposes) which are available to us today which use natural ingredients and are also fragrance free.

Soapnuts- the underrated cleaning agent

 Soapnuts (or reetha as it is known in India) is actually not a nut but a dried berry or fruit which is highly effective in powder and liquid form and can be used to clean clothes, jewellery, dishes, hair and other household items. It is found mostly in India and Nepal and was used extensively in India to wash clothes and hair long before liquid detergents and shampoos took over.

 

Nutshells of soapnuts in a cotton bagThe saponin which is found in the fleshy part of the soapnut is a 100 % natural hypoallergenic surfactant which is believed to have antibacterial and antifungal properties as well.

  • Soapnuts can be used for cleaning pretty much anything and is the only cleaning product which is completely natural. Any other product which is labelled ‘natural’ will contain at least some chemicals like preservatives, fragrances amongst others.
  • The other important aspect of using soapnut is that it extremely convenient to use in washing machines (front and top loading) and dishwashers (in liquid form).
  • We use soapnuts regularly as the main cleaning agent for all our clothes and white vinegar and essential oils (lemon is my favourite) as a fabric conditioner and to remove grease and add natural fragrance to the laundry.

Other laundry products

 Apart from soapnuts products which are natural, biodegradable and convenient to use either by hand or in washing machines are as given below.

Power Laundry, Liquid Laundry and Bio Laundry Bar from the Rustic Art brand: The main ingredients in these products are soda ash, natural neem soap powder, glycerine (for liquid laundry), non edible oils (for soap bar) and natural lemon extract. I use these products for my bed linen, towels, soft furnishings and other heavy materials, delicate clothes and woollens (Liquid laundry) and I use the Laundry bar for the tough stains.

rustic_art_power_laundry-kidsstoppress

Bio-D from Dailydump.org: Bio-D is a bio detergent by dailydump.org (a brand of Bangalore-based PBK Waste Solutions Pvt Ltd) which is a biodegradable product made from palm oil. I have been using it as an alternative to the Bio Laundry bar from Rustic Art for the past year or so for the clothes which are handwashed.

Another product which is relatively new and is available in India is Kyra Natural Detergent Powder which is made of organic soapnuts. I plan to use this in the near future.

Home clean home

 There are various household non toxic and environment friendly cleaning products which are available to us. One can use basic kitchen items like white vinegar, baking soda and lemon to make cleaning products. I have used a combination of these from time to time to clean my kitchen pretty effectively. ONe of my favourite recipe for a multipurpose cleaner is as given below-

All-Purpose Cleaner recipe from goodgirlgonegreen.com

3 parts filtered water

1 part vinegar

1-2 tsp lemon juice

5-7 drops of lemon essential oil

Source:http://www.goodgirlgonegreen.com/7-diy-cleaning-recipes-using-vinegar/#sthash.dwxieNSg.dpuf

(You can check out more useful articles on homemade and non toxic cleaners from the following websites-

http://www.goodhousekeeping.com/home/cleaning/tips/a24885/make-at-home-cleaners/

http://www.thenewhomemaker.com/cleanorg/vinegar.html)

Natural cleaner. Vinegar, baking soda, salt, lemon

But for those who want a more convenient off the shelf option there are other products available as well in India. These products are made using natural ingredients like essential oils, plant extracts which are thus biodegradable, non toxic and eco friendly as well. I regularly use the products listed below for my cleaning purposes:

  • Just Mop Spray- Multipurpose Household Cleaner and Just Mop- Herbal Surface Cleaner from the brand Herbal Strategi
  • Floor and bathroom cleaners from the brand SOIL
  • Floor cleaner from the brand Safe O Shine

Harmless dish washing alternatives

Dish washing detergents also use foaming agents, synthetic fragrances and other chemicals to make them extremely effective in cleaning grease and dirt. But if you are really interested in making a change for greener alternatives, there are other options available.

One option is to make a dishwashing liquid from basic items like washing soda, citric acid and vinegar like the recipe mentioned below from the blog myhealthygreenfamily.com (source: myhealthygreenfamily.com/blog/wordpress/homemade-borax-free-dishwasher-detergent-with-secret-ingredient/) which also can be used in the dishwasher

1 cup washing soda (old recipe used  baking soda)

1/4 c. citric acid

1/4 c. coarse salt

10-15 drops of citrus essential oil (Optional.  Orange, grapefruit, or lemon essential oils have great cleaning as well as antibacterial properties.)

Distilled white vinegar (in the rinse aid compartment)

Mix first 3 ingredients well in an air tight container. Add essential oil.  Mix again.  Fill your rinse aid compartment with undiluted white distilled vinegar.

Use 1 tsp. detergent for average loads.
Use 1 tbsp. detergent for extra greasy, dirty loads

White distilled vinegar can be thus be used along with lemon essential oil as a rinse aid thus eliminating the need for any artificial rinse aid products.

Another option is to buy a scrub made of the combination of soapnuts, shikaki (dried fruits of the Acacia tree native to Asia) and lemon peel which is a completely natural, non toxic and ecofriendly option for dish-washing by hand like the one by dailydump.org.

Availability and delivery in India

I have been able to find out about all the products mentioned earlier through a lot of research on this topic over the past few years. I have also managed to source these products in a few cases through the manufacturer’s own websites but more often than not through the various websites advocating a green, eco friendly and healthier way of life. These are websites which list organic foods, clothing, personal care, cleaning and other products.

Some of my favourite websites (with quick delivery and good service) are as listed below ( in no particular order):

  • DailyDump.org : A comprehensive website which promotes green, eco friendly and sustainable lifestyle through composting and non toxic products for home and garden. This website has the Vanastree soapnut and shikaki scrub (manufactured by Dailydump) that I use for my dishwashing needs and the Bio- D biodegradable detergent for laundry purposes. They also have their own brand of soap-nuts (108 Soapy Nuts).
  • Naturalmantra, Greenngood and naturallyyours.in: These are comprehensive websites which list organic foods, supplements, natural home care, personal care products etc and is very convenient to buy laundry and household cleaning products from. I use all of these websites from time to time for my house cleaning, laundry and other household and organic grocery requirements.

I have compiled some of the easy and convenient ways in which you can use non toxic, natural alternatives for your household cleaning, laundry and dishwashing needs and their availability. I hope that this will encourage you to make your home a greener, eco friendly place for your family and friends.

Please feel free to get in touch with me for any queries or if you have any suggestions on this topic.

“Not all those who wander are lost” (eczema and our ongoing journey)

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There are many of you who have been following us on our journey as we deal with our daughter’s severe eczema over the years. There have been many ups and downs; times filled with a seemingly never ending despair and other times where we see the silver lining that is hidden behind the dark clouds. We have many nights of sleeplessness, days and nights filled with endless itching and bouts of crying when it gets too much sometimes. There is also THE question which comes up once in a while, “Why me?” I have no real answer to her question which would satisfy her need to know.

But I do know this! 

Through all  these times we have experienced many precious moments filled with small pleasures, much love and loads of fun. We have learned how to appreciate all that we have by focussing on all the good things in our life rather than all that we do not have. This helps to put things in perspective and never fails to bring a smile to our faces. We have also learned to accept that our life and our daily routine is usually quite different from others and we have made peace with it. We simply have different requirements than most other families when we travel, eat out and socialise amongst other things.

We have come to realise over a period of time that this is our new “normal”. Whatever normal family life we had envisioned for ourselves when we had our first child fell by the way side when our daughter’s eczema became a huge part of our lives. We have simply changed the definition of leading a “normal” life and now use one which works for us! 

Our life has thus changed drastically over the past few years in terms of lifestyle, food habits and priorities. I have been sharing these changes with you through my blog for almost two years now. In this post, I have shared the actual changes that we have made to our food habits over the past 9 months or so.

Our diet today based on eczema safe foods

 

I had mentioned in my post last month (https://eczema-anindianperspective.com/2015/04/08/you-are-what-you-eat-eczema-and-food/) that I would write about her diet in details in my next post and here I am!

It has been roughly about 6 months since I started to follow a very specific diet to control my daughter’s eczema based on the book “The Eczema Diet” by an Australian nutritionist, Ms Karen Fischer. The initial 3 months have been the toughest so far with restrictions on the number of fruits, vegetables and spices amongst other things. I did however prepare her mentally over a period of time prior to starting her on the diet to make this transition as smooth as possible. This is a huge change in lifestyle since food comprises a big part of our lives and this change needs to be handled well especially for a child. Once my daughter understood why we were making these changes and how it had benefited others like her suffering from eczema, she became a willing participant. 

These restrictions are to repair my daughter’s system from within by restricting the intake of the various naturally occurring chemicals (salicylates, sulphites and MSG), allergens, anti nutrients and restore acid alkaline content in the body. Eczema unfriendly food groups like ,wheat, dairy, eggs, sugar etc were all removed even though initially I did give her low gluten foods like spelt flour, rye and barley (no wheat). Eventually over the past few months her diet has been gluten and dairy free, she mostly has organic grains and produce, no refined sugars are added (only much less acid producing maple syrup and golden syrup in low quantities is allowed) and mostly free of preservative/chemical/colouring free (the only exception is the occasional rice pasta).

Simultaneously the acid-alkaline balance in her body is being restored through a higher intake of alkalising foods like moong bean sprouts, celery, beetroot, carrots etc on a daily basis and taking only those acid-forming foods like legumes/wholegrains/chicken etc which are good for skin or are nutritious in other ways. Restoring this acid-alkaline balance is very important because our diets nowadays tend to be filled with mostly acid forming with foods like bread (containing yeast); sugar in processed foods like breakfast cereals, bakery items apart from beverages (fruit juices, sodas etc); corn and corn based foods; cheese just to name a few. While going to an extremely alkaline diet is not recommended, our body needs a healthy and balanced diet to maintain healthy kidney function and prevent weakened bones, muscle wasting and of course the itchiness which is prevalent in those with eczema.

(Further reading resources: http://www.mindbodygreen.com/0-5165/Alkaline-Acidic-Foods-Chart-The-pH-Spectrum.html

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3195546/)

The diet is divided into 2 phases- Phase I and Phase II and I have written about them in my earlier post-

https://eczema-anindianperspective.com/2014/12/29/our-new-eczema-diet-and-a-heart-full-of-gratitude/

Phase I–  The phase I recipes were very basic and initially I followed most of the recipes given in the book. But I had to adapt some of the recipes a bit to suit our Indian taste and add a few of my own in order to ensure that I could give her some variety even with all the restrictions. She was allowed only garlic and parsley as far as spices and herbs were concerned which proved to be the toughest part about following the diet since Indian food is filled with all kinds of spices. The other difficult part was cutting out all (100%) processed foods and eating only homemade food. Some of the foods that my daughter enjoyed in the first phase were baked fish (pomfret) with garlic in white sauce made of soy milk and brown rice flour; baked chicken in garlic and in a similar sauce; mutton/chicken biryani (or lightly flavoured mutton/chicken in a kind of rice pilaf) with only garlic and broth as the main flavour.

While initially it was difficult for her to forego a lot of her favourite foods (pizza, Maggi noodles, baked items like doughnuts, cupcakes, biscuits and candies to name just a few), over a period of time she has accepted it as a way of life and has made peace with it. In response, her skin condition improved visibly and her itching reduced to an extent. But I should also mention here that since she was started on a new immunosuppressive medication (Methotrexate), the changes would be due to both her medication and diet. But while medication would have helped to suppress and control her eczema, her skin tone has gone back to what it was 2 years back and all the weight that she had put on due to oral steroids simply fell off. I attribute these two significant changes to the changes in her diet.

Phase II – The second phase has been much easier to follow as compared to phase I. Also the fact that I have honed my skills as a baker and chef has helped immensely. I can honestly vouch for the fact that necessity is the mother of invention! All the restrictions that circumstances have placed upon my daughter and as a result on our family have helped me to innovate and become a better cook/baker than I would possibly have ever been otherwise.

Our family is eating a larger variety of healthy foods than ever before with minimal processed foods (so bye-bye preservatives, sugar, chemicals, refined and simple carbohydrates, junk foods) and loads of heart healthy, skin friendly fruits, vegetables and protein (mostly fish and chicken) with natural/organic ingredients. The fallout of all this is that both my husband and I have shed some of our excess weight naturally as a result of incorporating green and healthy juices/smoothies, healthy snacks etc into our own diet.

(You can read more here- https://eczema-anindianperspective.com/2014/12/29/our-new-eczema-diet-and-a-heart-full-of-gratitude/)

SInce I had to restrict my daughter’s diet to ones with very specific ingredients, I started making a lot of the desserts/foods like crackers, cookies, doughnuts, cakes etc with eczema safe ingredients at home. Over the last 6 months I have added a lot of variety in terms of foods like jowar, brown rice and brown rice flour, flour, quinoa, sweet potato, sprouts (all kinds), vegetable juices and smoothies. Quite a few of these changes have been for the entire family.

There are however “The Itchy Dozen” foods according to the book which are healthy for most people but do not usually suit those with eczema and is best avoided. Some of these foods that I now avoid giving my daughter are tomato, corn, grapes, dried fruits, deli meats (sausages, ham etc) since all these foods are high in amines, sulphites and MSG (in varying proportions and various combinations). You can read more about these foods at the link given below-

http://www.eczemalife.com/pages/top-12-eczema-itchy-foods-to-avoid

A few suggestion for meals and snacks

Making snacks which are tasty and at the same time eczema safe has been a big challenge but I have managed to adapt and find alternatives which work for us. Working with Indian staples like puffed rice or murmura, flattened rice or poha, lentils and pulses like moong daal, red chana, kabuli chana some of the food items I started making are mentioned below-

  • bhel (a dry mix of puffed rice, potatoes, carrots, coriander leaves, cucumber with citric acid and a touch of cumin)
  • potato/sweet potato tikkas with/without mutton kheema/minced spiced with ginger, coriander, whole cumin (mashed potato croquettes shallow fried in the pan)
  • Moong daal chilla (or crepes with moong daal soaked overnight and then made into a batter) with onions, coriander accompanied by mint and coriander chutney
  • hummus dip(chickpeas, garlic and citric acid with a bit of cumin) and vegetables like carrots or cucumber
  • popped jowar (a delicious alternative to popcorn) is a favourite for both my children and is made pretty much the same wasy as pop corn

Some of the main courses that my daughter enjoys apart from our regular Indian meals are-

  • veggie and rice pasta with loads of garlic and mixed herbs (no cheese) with/without chicken
  • Brown rice and moong daal dosa with potatoes (I am not giving her any fermented products yet)
  • mixed veggies and rice flavoured with broth and a few whole spices (bay leaf, cinnamon and cardamom) with/without chicken
  • I make various soups with eczema safe and skin friendly vegetables like beetroot, sweet potato, carrots, and others like chicken and veggies soup, chicken and pasta soup, mutton stew (occasionally)
  • brown rice noodles (occasionally) with veggies

You can be as creative as you want but the key thing here is to plan ahead. Also, keep in mind that eating healthy does not mean eating only a few foods and having dull or unappetizing foods. Since I have been forced to look outside my comfort zone of eating/preparing the same foods all these years, it has actually opened my eyes to the amazing variety and richness of foods that is available to everyone if one knows where to look.

The availability of different varieties of foods (quinoa, gluten free flours, golden syrup, organic produce, kinds of microgreens and salads, gluten free milk like almond and soya to name a few) both offline through Godrej Nature’s Basket and Foodhall stores in Mumbai and online (gourmetco.in, foodesto.com, naturallyyours.in) have really helped us a lot.  

It’s not a diet, it’s called Eating Healthy

As our daughter now says, she is not following any particular diet as of now but simply eating “healthy”.This is true not only for her but for the entire family. Of course it is not always very simple or easy to eat healthy especially while travelling or eating out even though our daughter’s eating out now is extremely restricted for obvious reasons. But now I realise that after more than 9 months of changing our food habits at home, my husband and I tend to think twice before we order the next cake, sugary drink or buy a packaged food. What started off as a necessity to manage our daughter’s eczema has become a habit for us. It became easier for us to accept and change our food habits once we realised the critical importance of diet in managing chronic illnesses like eczema (I have written about this in my earlier post- https://eczema-anindianperspective.com/2015/04/08/you-are-what-you-eat-eczema-and-food/).

Also, even though I have expanded her diet and modified it to suit our Indian tastes over a period of time, the book “The Eczema Diet” is what first made me consider food and diet as a tool for managing eczema. I have now come across and follow various other blogs and websites which are dedicated to managing various kinds of chronic conditions through food and dietary changes, reduction in stress levels, yoga and other forms of mind- body excercise etc.

As mentioned in my post (https://eczema-anindianperspective.com/2015/04/08/you-are-what-you-eat-eczema-and-food/) we will be getting some tests done in London with the help of a Functional Medicine practitioner for “gut health” permeability. Gut health is determined by a healthy variety and a community of about 100 trillion microbial cells in our digestive tract and impacts our physiological, nutritional, metabolic well-being including our immune system. It is now considered to be one of the leading causes of all kinds of chronic illnesses like coeliac disease, irritable bowel syndrome, eczema (now considered to be an auto immune disease), Graves disease, Hashimotos just to name a few and it’s importance is best explained by the image below. I will be wrtiting more on these once we get tests done next month and have more clarity on the same.

An external file that holds a picture, illustration, etc.<br /> Object name is 1741-7015-9-24-1.jpg

You can do your own research on this and use this knowledge to make an informed decision about the making food and diet an important part of the treatment for your child or anyone suffering from autoimmune disorders/chronic conditions.

(Image source: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3065426/figure/F1/)

(Further reading: http://www.nih.gov/researchmatters/october2014/10062014autoinflammatory.htm

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3667473/)

Not all those who wander are lost

And so it is with us. Our journey is long and is filled with twists and turns and Atopic Dermatitis seems to be our constant travelling companion whether we like it or not. So over a period of time, we have learned to gracefully accept these circumstances to make our journey more comfortable and even memorable. This is true even though all the while we are constantly trying to manage our daughter’s eczema in ways which are less harmful to her in the long run. Whether we realise it or not, sometimes it is the journey which teaches us a lot about our destination….

 

 

 

 

 

 

The journey of a thousand miles begins with one step

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Our family’s journey began some years ago when our daughter was diagnosed with eczema (Atopic Dermatitis). Since then we have come a long way. It has motivated me to work towards increasing awareness about this condition in our country where it is very low. This will not only help my daughter but also countless others sufffering from this condition who have to deal not only with Atopic Dermatitis but also with a society which is not sensitised to this condition and hence increases the level of suffering and pain in myriad ways.

In this regard, the first “Walk for Eczema” in Mumbai was organised by the Eczema Support Group for Parents and my daughter’s dermatologist Dr Manish Shah (under the aegis of IADVL SIG Pediatric Dermatology ) on the 17th of May, Sunday at Bandra West. It was attended by our family, friends and other supporters as well as some prominent dermatologists from South Mumbai. We were able to reach out to many who were attending the Equal Streets Moevement in Bandra and pamphlets about eczema were handed out to them in three different languages.

The success of this walk is measured not only in terms of the number of people we were able to reach out to directly but also in terms of bringing together for the first time parents, patients and dermatologists who walked hand in hand for this common cause. This event has thus helped to pave the way for such future events which will go a long way in increasing awareness in our country.

You are what you eat (eczema and food)

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In my last post I had written briefly about the Eczema diet I had started for my daughter in October 2014. It is almost 6 months now and we have had some time to get used to her new diet. I have become very familiar with new foods (for me) like Spelt flour, quinoa, apple cider vinegar, Carob powder (alternative to cocoa) and have become well acquainted with foods like Sorghum (jowar), soya milk and beans, sweet potato, beetroot amongst others. More importantly, we have seen a gradual but definite improvement in her eczema under the combined influence of her immunosuppressive medication (Methotrexate) and her diet.

This is the first time in 3 years that she played a bit of Holi (a festival of colours in India) this year with safe, organic colours and it was delightful to see her so happy to take part in an activity which others can take for granted. There is one other thing that I want to point out in this regard. There have been a few of mild flare ups in the last 6 months- this has been partly due to introduction to new foods in her diet, sweating etc. But what stands out is the fact that usually tweaking the diet a bit for a short while helps to calm the flare up without the need for any additional medication like topical steroids etc every time. Now in fact, after a long time, Aiyana’s eczema is only on her neck and ankles and not all over the body. Her eczema is still a work in progress with a long way to go yet but each small step forward is a cause for celebration for all of us.

You are what you eat (so don’t be fast, easy, cheap or fake)

real food word cloud

Even though I am not a certified nutritionist or an expert and my family’s journey to control eczema through diet has just started, I want to share with you what I have learned so far. I hope that my story might encourage you to find out more about your own diet, lifestyle and its impact on your health and make changes if required. What I love most about using this path to treat my daughter’s eczema is that this is in my control  since I get to decide and control the quality of ingredients and nutrients which enter our systems. This is very different from giving medicines and trying out other treatments where there are various (and sometimes harsh) side effects, none of which are under our control.

One of the key learning for me this past couple of years has been the realisation that the foods that we eat have a far greater impact on our health and wellbeing than I could have ever imagined. I always knew that food gave us energy and was a necessary part of our lives but never knew or realised the critical role that it plays as far as our health is concerned. There is obviously no only one right diet for everyone. And we are talking about real food here and not which comes from a package. Our food habits have changed a lot in the past few generations and we have moved away quite a bit from natural, unprocessed and simple foods. In India though, the emphasis is still on fresh home-made foods for most of us on a daily basis. But packaged, processed, sugar laden foods have become a big part of urban Indian lifestyle as today and we have an increasing incidence of  lifestyle diseases like childhood obesity, type 2 diabetes amongst others.

Simply put, the food that we eat plays a vastly important role and has both negative and positive impact on the body depending on what foods we are consuming. Also, in addition to food there are several other important factors which affect our health. These are namely, the toxins and chemicals we are exposed to on a daily basis, how we live our lives, how much we exercise and what kind of support system we have in terms of family and friends. Of course, in spite of taking all precautions and leading a very healthy life one can still fall ill due to various reasons beyond our control.

Life gives us no guarantees of course! But isn’t it still better to make the most of what we have till such time we can instead of taking our health for granted?

One word of caution here though. My daughter suffered from a life threatening infection due to a major side effect of the drug azathioprine which was meant to control her eczema. But it was also antibiotics and the timely critical medical care which saved her life. So one needs to take a well thought out and balanced approach when deciding on medical care. There are times when one has to take whatever measures like surgery, treatments and medications that are required to fight an illness or a health situation. Other times if there is a chronic illness or condition which just doesn’t improve with medicines and surgery alone, one can look at a combination of holistic approach and medications. At all times one has to take a decision about the relevant and proper medical care depending on the circumstances. The type and combination of medical care and a well balanced diet will differ from individual to individual.

(Sources and further reading: http://www.ncbi.nlm.nih.gov/pubmed/15639678

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3028965/

http://www.ncbi.nlm.nih.gov/pubmed/11229668)

Our relationship with food

Our relationship with food can be a bit tricky at times. Sometimes we use it as a crutch to help us through difficult times; other times it forms a part of our celebration apart from simply filling our stomach. We may also have strong feelings associated with it depending on our relationship with food. However, like many others I was not aware of the healing power that food has to offer. Simply put, we maybe able to control and in some cases reverse the effect of various disorders (especially chronic conditions) by making the necessary dietary changes. Hence, the food that we eat is a critical part of our healing process and we need to understand and respect that.

I am learning more about it everyday and I am slowly but steadily incorporating it into my entire family’s diet. However, diet alone may not have the desired impact for those with medical conditions since a combination of other factors like environmental toxins, stress, a leaky gut and infections usually affect the desired results.

There are various reasons why we do not hear about our diet as an part of our healing process (in addition to life saving medications and surgery whenever required) and this has been very well captured by Dr Terry Wahls (clinical professor of Medicine at the University of Iowa) in the article below-

http://www.healthy-holistic-living.com/doctor-didnt-learn-medical-school.html

Stories that inspire me

inspiration word in metal type

Dr Terry Wahls is just one of many who have successfully controlled (and in her case even reversed) their medical condition. She used a combination of dietary changes, excercise, supplements, electrical stimulation, meditation (for stress management) to successfully stop and also reverse the rapid progress of Multiple sclerosis (a neurodegenerative disease where the immune system attacks the Central Nervous system and has a whole host of symptoms which differ from individual to individual). The treatment that she followed is based on the principles of Functional Medicine.

She has published the details of her treatment and recovery in the science magazine Neuroscience 2011 and the link to the abstract is as given below-

http://www.abstractsonline.com/Plan/ViewAbstract.aspx?mID=2773&sKey=09785855-9734-496b-b682-d5b790e3eb46&cKey=4f661b9f-223e-44e7-89cd-c464d1222d6d&mKey=%7b8334BE29-8911-4991-8C31-32B32DD5E6C8%7d

You can also read about her at-
http://terrywahls.com/about/about-terry-wahls/

Another physician, Dr Amy Myers, has had a similar experience with her struggle with an autoimmune disorder involving the thyroid gland called Grave’s disease and where conventional medicine could not provide any solution. Dr Myers unsuccessfully underwent ablation surgery (permanently destroying the thyroid gland) before using Functional Medicine successfully to control her condition and has helped many others do the same without resorting to ablation/surgery unless absolutely required.

You can read her story here-

http://www.amymyersmd.com/2014/02/hyperthyroidism/

(Functional Medicine is a customised approach to medicine which differs from person to person and imbibes the best of science, research and innovative tools to treat the patient. It is completely patient focussed and takes into account the genetic factors, environmental and lifestyle influences of each individual before starting any treatment and thus does not treat the symptoms of a disease only. It strives to combine the best of conventional medicine and integrative medicine like nutrition, exercise, supplements etc)

Another person I would like to mention in this regard is another physician, Dr Naomi Rachel Yemen. She follows a completely different path to deal with her severe chronic condition called Crohn’s disease. She is a pediatrician by profession and is currently a Clinical Professor at the University of California for Medicine. However, the way she has dealt with her severe autoimmune disorder, Crohn’s disease, from 15 years of age for more than 50 years is what I wanted to share with you. Though her doctors had given her a life expectancy of only 40 years she has embraced life and has lived through a coma, eight surgeries, intensive therapy with powerful drugs and surgical removal of her large intestine. She has used a holistic mind/body approach in combination with other medications and surgeries in order to not only survive but also to deal with her intense suffering and chronic pain. In the process she has cofounded one of the first cancer support groups in the US and helped countless others who were otherwise medically beyond help. Over the years of dealing with her patients she has come believe in the power of healing from within often when there is no cure as in her own case. She has shared her thoughts in the link given below-

http://www.rachelremen.com/some-thoughts-on-healing/

You can read more about her life and the books she has written on her website-

http://www.rachelremen.com/about/

There are countless other such cases even though I have highlighted only a few examples in this article. What is common in all these cases and countless others is that it was ultimately something beyond conventional medicine which made all the difference to the quality of life even when there is no cure. One has to find what combination works best.

The long and winding road

cross road on hillside meadow in mountain at sunset

My daughter has been dealing with her condition for some time now and it is hard and a lot for an eight year old to deal with at times. However, we face the good days and the not so good days as a family and it helps her to get through the rough patches. I started writing this post thinking I would be focusing solely on her diet but ended up sharing with you much more. But I felt that it was important to tell you about the people who inspire me on this journey.

In this post I decided to share with you a few of those genuine and real life stories about people which have shown me that none of us are ever the only ones with these kind of problems. There are many others who have such serious, chronic medical conditions and deal with them in such healthy and non conventional ways. It is definitely worth knowing more about them and then finding out what works best for you. In my next post later this month I will write in more details about the actual diet that I am following for my daughter and its impact so far.

I also realise that while we have seen some improvement in her skin condition with the dietary changes and the medication she is currently on, it is not enough. I plan to take the help of a Functional Medicine practitioner and I am currently in the process of getting in touch with one in London. (I do not know much about the Functional Medicine practice in India and would need to find out more about it). I plan to get the requisite tests done for my daughter for determining the condition of her gut health through bacterial dysbiosis test (test for small intestine bacterial overgrowth), yeast infection, food intolerance test etc depending on the recommendations.

Gut health is considered to be of immense importance in Functional Medicine and is considered to be the cause of many allergies, arthritis, autoimmune disorders, chronic fatigue amongst a host of other medical conditions. Hence a good digestive system is very important for a healthy body and it may be severely or mildly but adversely impacted by various factors like stress, diet, overuse of medications, low-grade chronic infections like yeast, bacteria etc. There are tests to determine the gut health which would help me to focus on the areas that would need special attention for restoring the gut health for my daughter instead of trying out everything all at once. This is very important in order to remove the inflammatory foods, replace them with foods and ingredients required for restoring gut health, increase good bacteria in the system and repair the system by adding nutrients like Omega 3 etc.

The last time when we dealt with an experienced and well-known pediatric dermatologist in London, he recommended a course of treatment after carrying out the requisite tests which had disastrous consequences (I have captured this in my earlier blog post- https://eczema-anindianperspective.com/2013/10/27/the-tough-get-going-part-2/). This time around the treatment is based primarily on food and other natural ingredients which are in my control and have very limited side effects (if at all). Also, the past 6 months of following a specific and restricted diet (wheat free, dairy free , egg free amongst others) has given me the knowledge and confidence to handle major changes in the way we eat.

(Sources and further reading about gut health: http://www.ncbi.nlm.nih.gov/pubmed/15790845

http://www.ncbi.nlm.nih.gov/pubmed/14522724)

It is not an easy journey for us as a family with restricted travel and social outings due to the dietary restrictions. But I try to make up for it at home in various ways with the help of my husband, other family members and friends. I now know that there are so many others like us who are on similar journeys of healing themselves with food and healthy lifestyles and I am truly inspired by them. We are in this together as a family and that gives each of us a lot of strength.

As a wise person once said ” Life is like a journey, so lets enjoy the ride!”