CONTACT

Josie Evans

 

josieevans@yahoo.co.uk or use the form

 

You can send me a direct email

 

My aim is to build a community of people with mast cell conditions

Hello and Welcome to my site

 

Some background

 

I was well, working full time as a nurse . I became unwell in 2008 with with my symptoms . I was diagnosed Jan 2012 with Idiopathic Angiodeama and Anaphylaxis . During this time I have seen every doctor known to man . A quick roll call -

- GP 1 (guessed what was wrong )

- Chest medicne

- Heart medicine

- GI ( gastroinestinal medicine )

- Psychaitrist

- Chest medicine

- Rhumatology

- Neurology -

- GP2- sudden move but with the same main hospital

- Chest medicine

- GI medicine (3 weeks ) , neurology, urology, gynecology . pain team

- Immunology/Allergy

- Pain team

- Surgery

- Cardiology

- surgery

- Gyne procedure

- Surgery-abcess drained

- Chest medicine (main consultant in local hospital )

- Immunologist 2 - London - UK mast cell speclaists

- Another chest medicine (4 weeks admission )

- Endocrinology

- Psychiatry

- Endocrinology to diagnose addissions -which was making me cry

- Surgery -camera up - flexible sigmoidoscopy

- Gyne

- GP3 -Moved areas

- Chest medicine

- Immunologist 3

- Endocrinologist ( main doctor Locally )

Then numerous ED doctors and ward doctors when I have been unwell . My first ED knew me on first name terms this was very reassuring . Of all these doctors only 5 stick in my mind . 2 bad and 3 good . The 2 bad for just not listening .The 3 good for asking the important questions -like - how are you coping - which the answer was - I'm not . He was juniour doctor, and didnt know why I was having anaphylaxis , well 3 yrs quilified and I met him on medical admissions and then 2 months later in the resus room when I came in with anaphylaxis . The second time I was jabbering away, talking too much -and I said sorry -its the adrenaline -he said yeah- maybe -Its not just your personality then ;-) oooh maybe ;-)

 

I also have diabetes and adissions disease

 

 

 

About the Author

Photo-0150

Me ;-)

 

My smile isnt even because my cheeks are swollen, as you can see by how deep my eye rings are .

This was the last time I had my hair coloured and I nearly didnt get away with it . I flushed +++ and glazed and nearly passed out .

I won't be doing that again .

 

More pictures showing symptoms in photos section .

Me now and a bit about my condition .

 

My Name is Josie Evans -Jose to my friends

 

I am 37 and am now regiatered disabled . I love my garden , reading, films and music . Mostly 80's cheese but cheese of any era really .

 

I have lovley home and have had adaptations recently which make it perfect for me.

 

I have accepted my condition but have ups and downs in symptoms and in mood like anyone else but know I am an ordinary lady dealing with extraordinery circumstances .

 

My path over the last 4 years doesnt fit here .But i will be posting the book I have written about my experences on a sister site .

 

I felt I lost complete control of my life and my body but now I know I havent . Things have changed my mode of trasnport and my operation manual but I am still here . Still me, still jose ;-)

 

Brain fog renders me a monosyballic moron and I hate it because I can cope with the physical .Its when I feel im losing me I dont like it .

 

I like to know what my body is doing and why. This helps me deal with my symptoms . Everybody needs different things .I have developed the site to meet all sorts of needs .

I have reasearched in depth in medical journals, speclaist web sites and textbooks to build the information on this site . I hope it is understand able .I am happy to recieve any ideas on improving it.

 

Also any questions of mast cell conditions

 

Me professionally

I have a Batchelor in Science 2:1 with my nursing qulificantion -RN

I am now 37 (2012) and was nurse in active practice for 15 years .

 

I worked in several cinical specilaities inc ;-

- Cardiology (heart )and heart intensive care

- Chest

- Acute medicine

- Gynecology -and did not excerise my right not to participate in terminations of preganacy

- general surgery

- Diabetes care

- Orthopedics

- Urology

- GI medicine

- High dependancy- all care except a ventilator .

 

I have engaged in teaching activities in training, in clinical situations (teaching skills ) and formal teaching . This has included -

- Heart failure

- Anapahylaxis and beta blockers ( in my degree before I had any clue I would get ill )

- Oxygen therapy - practice and knowledge (dissertation )

I also had management expereince shift to shift

Hello and welcome

My book , my story - An honest account of going from well to ill and disabed - They want to come out -  is at -

josiebook.moonfruit.com
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