Mast cell Disorder Child's face rash

Mast Cell Activation Disorder – “Making Friends?”

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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!

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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!

Eating a salad a day is easy ....

My daily salad! ….

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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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Skin Writing - Ariana Page Russell

Skin Writing……

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“Skin Writing” is one of my more interesting symptoms. First and foremost, please take a look at Ariana Page Russell’s beautiful art work here on her website.  Please also see her website about skin writing entitled  Skin To Me  or Skintome. for more detailed information and advice about this condition.  Ariana is the expert. She has also made her skin condition into a work of art. On her website, Ariana says she uses “her own hypersensitive flesh to illustrate the ways we expose, express, adorn and articulate ourselves”.  Ariana is an artist, a creativity coach, and has founded the Skintome movement. “She has taken her skin condition dermatographia and used it as a means of inspiration, connectivity, and purpose”. I love her work. Fabulous idea! Read more

Chia Dessert with The Reluctant Raw Foodist

Chia Dessert Recipe

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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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Narcolepsy? Sudden Sleep with The Reluctant Raw Foodist

Narcolepsy? Or is this just Histamine induced Sleep?

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Narcolepsy? I am not really sure if I have this as it has not been diagnosed. In fact I was once told by a specialist that I didn’t have it. Not sure that he specialised in narcolepsy though! However, one of my symptoms is what I call “sudden sleep”. My brain can, sort of cut out and I can find myself asleep or something approaching it with my head on my desk. Read more

Histamine Intolerance and Diet - The Reluctant Raw Foodist

Histamine Intolerance and Diet

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Histamine Intolerance! Never heard of it when I was growing up and now it’s all the rage! I was first diagnosed with this condition in 2009 as well as Histaminosis, Mast Cell Activation Syndrome or Disorder and Reactive Arthritis. I have not had the test for Mastocytosis. I didn’t see any point as I react adversely to most prescribed medication that  I have tried in the past. I had already realised that  I was going to have to make a big shot at changing my condition with diet and lifestyle changes. Back in 2009, I was terrified that I was going to be living the rest of my life in a bubble……

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No poo .. No problem! The Reluctant Raw Foodist

No Poo… No Problem!

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“No Poo
Yes…I have not used shampoo since Christmas when I had my hair shaved off by a very unhappy hairdresser (she didn’t want to do it) as I discovered that firstly, my hair had gone white under the hair dye and, secondly, every part of my face that my dyed hair touched was burning. After my last hair dying (dyeing misspelt at the time but probably near the mark as it was killing my hair!) session at the hairdressers I actually wedged my head in my medical adviser’s consulting room sink trying desperately to get rid of the burning pain! My hair regularly used to fall out in clumps and I developed big bald patches where my scalp shone through. Read more