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Mast cell Disorder Child's face rash

Mast Cell Activation Disorder – “Making Friends?”

Mast Cell Activation Disorder   – Update

I am just feeling the effects of my mast cells going beserk. Under arm sweating, fingers tingling, scalp “lifting” mouth swollen, ears burning, throat closing face going pink and “crawling”, brain fog and anxiety and that’s just my head! Wow! Oops now I feel my skin lift, go red and itch like crazy and I can only be “glad” that this time, at least it is not my throat closing so that I am choking.  A small mercy.

Welcome to my world.

 

Mast Cell Activation Disorder

is an immunological condition in which mast cells inappropriately and excessively release chemical mediators, resulting in a range of chronic symptoms, sometimes including anaphylaxis or near-anaphylaxis attacks.  Here is a photo – well so I think as I didn’t take it ( LOL!). Here is also a link to some information on Wikipedia.   

Mast Cell Activation disorder

 

My Condition Update

I used to live with this on a daily basis so I am very thankful that I do not have these “attacks ” very often now. I do know that a lot of you good people out there have to deal with this everyday and I feel for you.

If you read my About Su page you will see that I was diagnosed with Histamine Intolerance and then Mast Cell Activation Disorder  in 2009 confirmed later by my  doctor. I also see a brilliant skin specialist regularly to check my condition.

I realised in 2009  that I had always had times where I had unexplained symptoms. Now since 2009,  I have become expert in my symptoms and managing them – well , most of the time anyway! But it still sucks! I do feel for anyone of you who goes through it on a a daily basis.

I now feel so much better and I am now living well again and travelling extensively. I have so much energy and I run and exercise on a daily basis.  My hair is so much thicker, my body works well and my skin is great.  It has taken time and effort but it has been worth it.

Cautiously I say now that I am “lucky” that my condition came to light and that I was given this opportunity to sort my health out in such a positive way. You might say I have made friends with my condition and I am, by and large, at peace with it.  Never ever thought I would say this but it has helped me (forced me) to get really well!

Thank you to so many people who are continually writing in about my diet. I feel privileged that you continue to come and ask while I have not been present on my website.

Some of you have asked to know how I did it I promise I will share it all soon. I followed a very strict diet under the guidance of Dr Fuhrman and I take no tablets whatsoever.  Yes,  No Antihistamines.

My very dear friend ,Yasmina, who was diagnosed at the same time and who set off with me on the path to get to grips with our condition decided to research it big time.  . Please See her website for further info.   Sadly Yasmina passed away recently from cancer but her work is her legacy.

I wish you well on your health journey.

Mast cell Activation Disorder

Su

 

 

 

 

 

 

 

The Reluctant Raw Foodist has returned..

I’m Back! Thank you for all the lovely messages!

I’m back!

So sorry to have been away so long! 🙂

What has been happening?

I have  taken time out to help to nurse my mother who was being nursed at home having Frontotemporal dementia. When  she died in June 2016 my brother and I arranged her funeral. I also lost my dear auntie to Alzheimer’s a month later. My husband who suffered 3 strokes at the ages of 60 and 61 is now 75 and requires continuous care at home.  He is now doubly incontinent  and has vascular dementia. My neighbour, who has lived in the house just next door to mine since 1981, is now 88 years old old and has ever worsening memory loss.  She is diagnosed with Alzheimer’s. Even the cat seems to have some dementia. I am surrounded!

Memory loss can be devastating . As a carer i am trying to find the  time and energy to get back to writing my blog.

Memory loss and brain aging due to dementia and alzheimer’s disease

Dementia is actually  a collection of diseases  that cause a long term and often gradual decrease in the ability to think and remember that is great enough to affect a person’s daily functioning. It is a terrible issue  to live with and to deal with as a carer because , it appears that the loved one disappears over a period of time.   For more information have a look at  this link back to Wikipedia. See also my own post on dementia. For those in need of urgent information there is a lot of information available on the web generally but it does pay dividends to look at several websites . Here is a link to the Dementia Society of America and here is another link to the Alzheimer’s Society here in the UK.

 

Over the last 7 years, of necessity,  I have become quite knowledgeable about caring for loved ones with dementia and I am thinking that maybe I will  set up my own website with information for  those with dementia and information about looking after the carer.

 

Back to what this blog is about!

Thank you all the lovely people who has sent me such kind messages. I have been overwhelmed by all the care. Thank you Thank you! I have also been going through some changes. I became 60 recently so a new decade! I have been amending my lifestyle to look after myself more and I have been dealing with some grief issues. I will say more about all these soon.

I have been finding life as a carer exhausting and have been meaning to come back here for some time but I never find the time so I am having to make my writing time  a priority.

So I am now going to get back right back to it!  See you very soon! 🙂

back to the veggies

Lovely food!

How Not To Die… What we didn’t know until now!

How not to Die? Hmm intriguing title! Latest on Immortality? With the book beside me as I type I have already had someone say that we all die eventually and ask so what is this all about?  This is Dr Greger’s excellent life changing new book and it packs a big punch right up front by informing us that there may be no such thing as dying from old age. Apparently current research shows that we actually die from diseases rather than old age! Think about it! Of course, the book is really about how not to die prematurely from diseases and how to live as healthily as possible. This is my dream book! I was very lucky to get an advanced copy. Mine is on order.

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Research into food choices causing dementia. Food for thought?

Dementia – Food for Thought?

Given that both my mother and my husband have quite advanced dementia, I have had to think and research about the possible causes of Alzheimer’s disease and the other kinds of dementia, and my research has led me back to a whole-food plant-based diet as being the best way to prevent brain decline in later years. Literally food for thought. By way of background my husband had a minor stroke in 2001, followed, in 2002. by a massive stroke from which I resuscitated him. Read more

Eating a salad a day is easy ....

My daily salad! ….

Give me my daily salad anytime! Wow! Never ever thought I would love salad! Growing up, I didn’t like my greens but then when I was a little girl, salad consisted of lettuce, tomato and cucumber with sugar sprinted over the lot! Yuk! I used to think that salad was a punishment food! Cabbage tended to boiled to death in salty water and then served smothered in butter. I feel a bit sick when I remember this now. Small wonder then that I didn’t make salad/ green veggies my first choice of foods later in life.

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Super Healthy Supper Salad with The Reluctant Raw Foodist

Supper Salad Recipe

Typical supper salad recipe for me. This is what I ate last night so it is hot news. Well, except that of course it was raw! LOL! Making it took me about 5 minutes if that.

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Chia Dessert with The Reluctant Raw Foodist

Chia Dessert Recipe

Thought I would make a chia dessert, this evening. My sweet tooth got the better of me. 🙂

This one contained raw carob which is something I love. It is sweet and chocolatey without bringing on my sometimes adverse histamine reaction to chocolate – NO sudden outbreak of spots! Hooray!.

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Fairport Convention - annual festival at Cropredy

Eating Vegan at the Fairport Convention Festival…

Fairport Convention are one of my favourite bands. I love watching them perform live and have seen them 3 times this year! LOL. I am a groupie!!! I loved every minute of the Cropredy Folk Rock Festival 2015 and didn’t want to come home!  I used to front a rock band, many years ago, and also I sang with a folk duo in my early teens. As soon as I see Fairport Convention  perform I am right back there, singing away. My guitar is definitely coming back out of the attic! Not sure why I ever put it away! Read more

At Cropredy Folk Rock Festival….

Audience at Cropredy Folk Rock Festival 600I am currently at the Fairport Conventions’s Cropedy Folk Rock Festival 2015 – a 3 day event.  Enjoying the fabulous  music, the wonderful people and the selection of food! Cropredy Folk Rock Festival is held in a little village called Cropredy near Banbury, Oxfordshire, UK, hence the name, and is the annual event of one of my very favourite bands, Fairport Convention.

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