How to Heal A Bruise, An ITP Book

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For Patients and Parents living with ITP,

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There is so much information available about the medical problems of immune thrombocytopenia.  Written by doctors and professionals, it’s difficult to read and even harder to decipher. Medical journals and scientific papers never address the questions you actually want answers to – What is it like to live with ITP?  How can I still live my life?  What will it feel like now that I have ITP?

HOW TO HEAL A BRUISE was inspired by Meghan Brewster’s most popular ITP articles.

 HOW TO HEAL A BRUISE includes stories from Meghan’s ITP Journey, some of the latest ITP research and advice for living a life with ITP.  This book is comprehensive yet easy read; from a person who actually has ITP.

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About the Author, Meghan Brewster

meghan brewster, author, how to heal a bruise, itp blood disorderMeg was diagnosed with immune thrombocytopenia when she was 22 years old.  She struggled to read dense medical journals and scholarly articles to learn more about her ITP.  What was missing from the ITP conversation was information from other patients, about what immune thrombocytopenia was really like.  

In 2012, Meg set up ITPANDME.  Three years later, it’s one of the largest ITP blogs in the world.  Meg has been writing about ITP for more than 6 years, has heard hundreds of patient stories and answered many questions about ITP life from patients and parents.

HOW TO HEAL A BRUISE is an honest account of her journey with ITP, as well as practical advice for living with ITP and information from some of her most popular articles.

This book takes you through the stages of ITP from coming to terms with your diagnosis to finally accepting and thriving with ITP, what to expect while living with ITP and how to make sure it doesn’t take over your life.  An honest and informative account of living with an autoimmune disease.

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Praise for How to Heal a Bruise

The book includes lots of ITP information such as, the science, history, tips and guides, alongside strong emotional support. It is now my own ITP Bible! I could not recommend it more highly! FULL REVIEW HERE from Katie Meloy

Beyond being a book documenting scientific and medical information, is the personal experience of Megan Brewster after seven years of living with this blood disorder and is enriched in fourteen chapters…I didn’t know what to expect on How To Heal A Bruise, then simply I couldn’t stop reading.  FULL REVIEW HERE from Laura

‘My partner and I absolutely love your blog and find many of your post’s to be just what we are looking for.’ Andy USA

‘Thank you for your thoughts…they’ve helped me with finding perspective in our reality.’ Jenny Australia

‘Love the way you write.  Meg, you made me chuckle.’ Bron Australia

‘Thank you for writing this, it will surely help the newbies.’ Padma, India

Features

  • The History of Immune Thrombocytopenia.
  • Practical Diet and Lifestyle advice.
  • Pregnancy and Babies with ITP
  • Advice on Natural Therapies and alternative medicine.
  • Possible Isolation and Depression from an ITP diagnosis.
  • Covering up Bruises, tips for healing and hiding bruises.
  • First aid tips and tricks for around the home.
  • ITP fears and how to overcome them.
  • A Huge list of References – Meg’s favourite blogs, books and ITP Resources.

Why I’m glad I have an Invisible Illness

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Feature image from LAURAWILLIAMS

If you ever find yourself with a spare 30 minutes, get onto Pinterest and have a look around for pins about autoimmune diseases.  That is of course, if you feel like getting really depressed about having an autoimmune disease or as Pinterest calls it, an invisible illness.

There are a great many people complaining about how others can’t see their autoimmune disorder.  Pinterest has a lot of upset people using it to spread the word about how you can’t see everyones illness and you can never understand about anyone else’s pain.

It looks a little something like this. Continue reading

The Seven Stages of ITP

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How does it feel to be told that you will likely live for the next 25 years with a rare, mostly unpredictable and unknown autoimmune disorder that will affect your blood’s ability to clot and heal and your immune system’s basic ability to fight off infection?

How does it feel to be told that there is little to no information about your disorder, that every case is different and unique, and will most likely eventually couple with a number of other autoimmune disorders as you age? – That there is no long term plan for the treatment of your disorder and all you can do is suppress your immune system and manage the side effects?

The answer to all these questions is this… fine!

Because by the end of that speech, you’re in shock.  You think to yourself…. Yes, yes, yes that is all very well and good for someone else, but none of that will happen to me (Even though at that exact moment it IS happening to you!!)  That is the beauty of shock and denial – The first stage of having ITP

Shock & Denial, the 1st Stage of ITP

When I received my diagnosis, I never felt any denial.  I told everyone about having ITP.  I was happy to discuss it and I felt ok about the diagnosis.  I thought ITP was actually quite interesting and told myself, ‘if you’re going to get anything, it may as well be something weird and different.’ Continue reading

The Cycle

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Feature image from ITPANDME

Menstruation, one of the most subjective topics for women with bleeding disorders.  The most common bleeding disorder is still von Willebrand Disease, which is caused by a defect in the bodies ability to produce a protein that helps the blood clot.  VON WILLEBRAND Disease effects both men and women, but women are far more likely to be diagnosed with the disease because of the most obvious symptom of heavy or abnormal bleeding during menstruation.

In fact, heavy bleeding during menstruation is a common means of diagnosing a lot of platelet disorders in women.  “Of all women with excessive menstrual bleeding, up to 50% will have a bleeding disorder,” says Deborah L. Brown, MD, an associate professor of pediatrics at the University of Texas Health Science Center in Houston. “This is a common problem among women of reproductive age.”  2007

When I was first diagnosed with ITP I was given a hormone drug to prevent menstruation.  My platelet count was so low that getting my period was considered dangerous but I had not noticed anything strange in the lead up to my disorder.  I had not noticed particularly heavy bleeding.

It is said, that women with ITP have a heavy flow (Read stories HERE and HERE and HERE) but whose to say what a ‘heavy’ flow is?  I certainly have never seen anyone else’s…

There is a lot of information online telling women with a ‘Heavy Flow’ to head to the doctor and get themselves checked for bleeding disorders.  Once diagnosed however, there is not very much information about what you can actually do to deal with this particular issue.

I was inspired to write this post because I was certain I would be able to help in some way, but the more I think about it the more I am at a loss.  What I have found, in the last 5 years is that, very simply, everyone is different – Every woman menstruates differently – Every period for that woman is different – Every doctor, friend and partner interprets your period differently – And most importantly, no one will ever know how it feels for you.

So how can we help each other?  Perhaps all we can do is open up about it.  Hopefully it might dispel a few myths about what an abnormal cycle is.

Mine is always different, totally irregular, very unpredictable and quite light at times.  So while I have heard that ITP woman can have a very heavy bleed, I can tell you that it is not always the case – not for me anyway.  Some times it comes on hard and strong.  (The longest lasted 4 weeks – and yes I certainly went to the doctor)  Other times I barely notice it passing.  For me, the issue is irregularity, unpredictability and very inconsistent symptoms.

What do I do?  I map it and pay attention.  What felt like total chaos started to make a bit more sense to me.  I begun to see that I have a very long cycle then a very short cycle.  Before you can start to really manage your period, I suggest you get to know it first.  Knowing how your body works is the best way of knowing when things are different.

There are plenty of ways to follow your cycle, like a diary, or a paper period journal but I prefer to use something like an electronic diary specially designed to log, track and predict your cycle, flow, symptoms and moods.  There are many to choose from, if you search ‘period’ into The App Store or Google Play.

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Period Tracker
Period apps for ITP
iPeriod
Period Calendar
Period Calendar

 

 

 

 

 

For me it is important to know and understand my moods in relation to my period.  This is so I can separate my symptoms from low platelet moods.

Knowing your own ideas of a ‘Heavy’ flow will mean that you can compare your symptoms to your symptoms alone.

So here are some of the issues I am facing, perhaps you are too.  When it is heavy, my energy levels can plummet along with my libido.  I feel out of sync with those around me and are distracted by always having my period on my mind.  I feel uncomfortable and restricted.  I struggle with feeling self aware and self obsessed and incredibly conscious of my body.

I can become quite negative during this time, frustrated that I have to deal with heavy bleeding.  And sad – that no one else has to deal with as much shit as me!  (I know, so much self pity!)

Sometimes there is not a lot I can do.  And I certainly wish I could offer more help than this.

Yeah I’ve been there…  Yeah it’s heaps shit!

What does it feel like? Information for Parents

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We have recently received a lot of messages from parents with children diagnosed with ITP, some as young as 2 years old.  Parents are looking for as much information as they can find.  These are messages of kindness and confusion as they try to better understand what their children are going through.  The most common question is this…

 – What does it Feel Like to have ITP? – 

So what does it feel like to have ITP?  If you were trying to explain what it felt like to have ITP what would you write?

Screen shot 2013-11-10 at 4.32.19 PMHow do you feel on the Bad Days?  How do you feel when your platelets are falling?  How does it feel after you have exercised or exhausted yourself?  How do you feel when you don’t get enough sleep?  When you bang your wrist on the door?  How do you feel when you can’t cool down?

We would like to collect as much information as possible about how it feels to have ITP on behalf of all the children who can’t describe what they are going through to their parents.

If you are willing to contribute your own feelings on having ITP – What it feels like to YOU – We would love to hear from you.  Everything you share will remain anonymous (apart from your gender) and will be made available shortly in an article posted on this site.

Contact us through our email itp.and.me.g@gmail.com or message us on Facebook.  

Thank You