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But overall, I have a new life, one that wasn’t planned and one that is restricted in some parts. But I think it is a life filled with love and respect and the new version of my life is quite lovely; I think I will keep it, drugs and all. Continue reading Ten years since my chronic diagnosis
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My fatigue is a mix of physical and mental symptoms, sometimes it is not easy to split these two areas, but I will try. Often, I feel the physical is easier to describe, less subjective and more “believable”; I don’t really understand why I think this way, I just know that I do. Continue reading This is my fatigue.
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Pets and how they help those of us with chronic illness. Continue reading Long term illness and pets.
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‘Please carry on wearing masks after Freedom Day – it could save lives like mine’
Continue reading Interview with the UK Daily Mirror
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The world waits for the COVID-19 vaccines to make a difference. For immunisation to change our world and allow us to go back to reality, return to the office, go to the pub, fly away to the tropics, a normal life. I have this feeling; I want an ordinary life. I want Covid to go away so that I can travel and visit my Mum … Continue reading We wait for the COVID-19 vaccine to take control. But I hope for a different cure.
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Prednisolone, steroids, pred, miracle drug, whatever we call them, these drugs are powerful beasts. They may be small, but they are mighty. If they were a dog, they would be a chihuahua tiny but with a massive impact on your life. I have been on Prednisolone at various doses for nine years. They have left me swollen, overweight, irritable but alive, and there is the … Continue reading Prednisolone withdrawal.
Please note this is my personal experience of Rituximab, your treatment may vary, you should discuss your individual plan with your doctor. I am not providing any personal advice. So you need to have a biological infusion? My first thoughts were: And the most important question: My infusion was called Rituximab (also known as Rituxan or MabThera), and it was to treat my ANCA associated Vasculitis. I … Continue reading Rituximab infusion, things I wish I had known
Today I launch my first book, I’m nervous, excited and also terrified. The book started as my own therapy of how to deal with everything that was changing in my life, and then I started to write down things I had learnt along the journey. And then I thought that the insights we had gain may just help somebody else. And so the idea of a book formed. Continue reading New book published: Chronic Illness: learning to live behind my smile
My interview with Health Central: Fighting for Her Future Diagnosed with ANCA-associated vasculitis, Jane Edwards has learned that the right attitude is everything in managing this chronic disease. Updated Jul 9, 2024 By Claire Gillespie Medical Reviewer Harley Cohen, M.D. https://www.healthcentral.com/condition/vasculitis/fighting-for-her-future Multiple medications and more tests later, Edwards received a diagnosis: granulomatosis with polyangiitis (GPA), a type of ANCA-associated vasculitis formerly known as Wegener’s granulomatosis. The … Continue reading Fighting ANCA-Associated Vasculitis: A Personal Story
A few weeks ago, the lovely Felicia Distad invited me to be part of her excellent podcast series. She describes the podcast as: Let’s talk about ALL THE THINGS. Health, family, friendships, kids, work, and how to show up every day and fight through it all. Lady, I’ll remind you that you can do hard things because we have already done hard things. She also … Continue reading Go listen to my interview on Fight Like a Mama podcast.
Some days I feel very flat, not flat-chested, flatlined or flat earthed, just plain flat; the feeling where you really don’t care what happens, what you eat or wear. I’m not sure if you class it as fatigue, depression or some other title that may fit the mood. I don’t like to admit that any of these words apply to me, so it is merely … Continue reading Some days are flat
I am so tired of governments assuming that we are on one side or the other of an argument! We are all either Brexiter or Remainer, believe COVID is real, or we don’t, and we are racist or not. There is an assumption that we pick a political party and cannot ever agree with the opposite party. And the politicians, well they just seem to … Continue reading Hey Politicians, remember there are more than two sides to a story
Chronic Illness: Learning to Live behind my smile 