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My aim is to build a community of people with mast cell conditions
Hello and Welcome to my site
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 )
- Chest medicine
- Neurology -
- GP2- sudden move but with the same main hospital
- Chest medicine
- GI medicine (3 weeks ) , neurology, urology, gynecology . pain team
- Pain team
- 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 to diagnose addissions -which was making me cry
- Surgery -camera up - flexible sigmoidoscopy
- 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
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
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
- Acute medicine
- Gynecology -and did not excerise my right not to participate in terminations of preganacy
- general surgery
- Diabetes care
- 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