The Questions I get Asked the Most.

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Feature image from FWISCOVERS

1. I am so confused!  Can you Help me?

I hope so, but not always.  Almost every email I receive begins with this sentence or something very similar to it.  I am not a doctor and I have not ‘cured’ my own ITP by drinking kombucha tea.  Chances are I probably can’t ‘help’ you in any physical sense.

But I would love to make you feel better and help to ease your mind about ITP.  My aim is to promote a more positive frame of mind, remove a lot of the fear and misunderstanding from ITP, help you to take practical steps to regain control of your life and hopefully make you laugh.

2. Can I still exercise and go to the gym?

The best way to answer this is to again speak from my own experience.  I exercise a lot.  I don’t go to the gym because I prefer to walk and dance.  If I was a gym person I would defiantly still go.  I prefer to walk, ride my bike around town and go to dance classes.  I do about 6 hours of ballet a week (I know what you’re thinking, she’s probably pretty good! But sadly no, I am still terrible).

But let me be clear.  This exercise is hard.  It hurts and I can feel it the next day.  I am sore and my muscles always ache.  It is not easy for me, but I try not to be discouraged or scared by how differently my body responds to exercise.  If I have a very bad run of low platelets and terrible side effects, I return to dancing via a few weeks of yoga first.

3. How long will it last?

There is no way to know how long your ITP will hang around for.  Generally vaccine induced ITP is acute and will be in remission after six months.  Other than that, there is no way to really know.

4. Will I give ITP to my kids?

In short, no.  While there is no scientific evidence that parents with ITP will have children with ITP, it has HAPPENED BEFORE.  There is a fine line between nature and nurture.  Babies born to ITP mothers may have a low platelet count shortly after their birth.  This is because they are still processing and recovering from antibodies in their mothers’ blood.

5. Have you ever had Rituxumab?

No. I personally have not had Rituximab.  I do have a number of friends that have taken it and have seen my mother go through two courses of the drug.  If you are looking for more information on Rituximab, I recommend you read THIS article.

6. Which treatments have you had?

I consider myself very lucky with the treatments I have had for ITP.  I have a prednisone responsive immune system and am able to mostly treat my ITP through steroids (though they have their own problems, I know).

7. Which Diet / Nutritional Philosophy do you follow?

I eat a very relaxed combination of the PALEO diet and the EAT RIGHT FOR YOUR TYPE diet.  My blood type is O.  Type O people are recommended to have a protein heavy diet, which is what I naturally crave.  So when I tell people that paleo really works for me, I need to be clear that it also fits well with my blood type.

When I say I am relaxed about what I eat, I mean that I don’t let my diet interfere with social occasions or refuse loving home made food.  I eat whole foods made from scratch.  My indulgence is cold press pear cidar and shoe string fries.

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.

How Do You Want to be Treated?

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Feature image from BLOGENLINEA

(A lazy scientific experiment)

Lately I have been thinking a lot about the word treatment.  I have heard it a thousand times in the last few weeks as I have watched my platelets fall and rise and fall again.  I have been waiting for surgery and waiting for the blood bank and waiting to get better and waiting for the bleeding to stop; and all the while I have been hearing the word treatment over and over again.

What does the word treatment actually mean?

Treatment; 1. To act or behave towards a person in a certain way.  2. To consider or regard in a certain way and deal with accordingly.  3.  Subjection to come agent or action.  4. The management in the application of medicines.

So there it is!  My treatment does not only consist of what I am given but how I am given it.  Part of my treatment from doctors and medical staff, is the way they act or behave towards me.  Since I realised this, I have not been able to stop thinking… How much of the success of a medicine is determined by the way it is delivered to the patient?

At the moment I wish I were a scientist.  I have had an idea for a few research experiments.

The first experiment would be this…There are two groups of people.  Both groups of people are about the same age and gender, with the same disease requiring the same medicine.  One group goes every week for a month to receive their medicine from an attentive, lovely, positive doctor who is interested in their lives and never treats them like a bother.  The second group go every week for a month to receive their medicine from to total asshole with no time, who does not make eye contact with the patient.

I am desperate to know what the results of this experiment would be.  I wonder if there is any research out there, about the delivery of medicine.

The second experiment would be about how people treat themselves.  I would need two groups of people again with the same disease requiring the same treatment.  I would have both groups go to the same doctor this time – BUT one group would treat themselves like sick people, and the other group would treat themselves like healthy people.

I wonder what the results would show?

How you are treated by others has a lot to do with how you treat yourself.

This week, as I head in for a number of appointments and organise more trips to specialists in Sydney, I am going to be very conscious of how I treat myself and how that effects how I am treated by others.

If I act like a sick person, will I get treated like a sick person?

If I act like an asshole, will I be treated like an asshole?

 

How to Break Up With Your Doctor

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Doctors are wonderful.

Not everyone will agree with me on this, but that’s ok, not everyone has the same doctors as me.  And even more interestingly, not every knows they don’t have to just take the first doctor / haematologist / rheumatologist / immunologist that comes their way.

My doctors are often more caring, interested and non judgemental about my medical status than some of my friends.  My doctors are happy for me to email them sometime and I have their mobile numbers in my phone. My doctors give me less shit about drinking wine than some of my family does, Bennett?

My doctors have been there, even long distance, for all my freak outs but not all doctors are great.  Why do I have such great doctors?  It’s not luck.  I found them.  I actively went about finding the best doctors available, making sure they were the right ones for me.  In doing so, I had to break up with my old ones.

You don’t always have to take the first doctor that see’s you.   Don’t be fooled into believing how lucky you are to even be seen a doctor, especially in the very first stages of your illness.  It can be a seductive time, where you fall into the arms of the first person to help you, as you look for answers from whoever is closest to you at the time.  During the fear and confusion of being diagnosed with ITP, it can be such an utter relief to find a professional willing and able to help you through the chaos.  Accept this help, that is fine.  But like any long term relationship, ten years later the honey moon period may be over and you might start thinking – I don’t really like you, actually. Continue reading

Robert

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My name is Robert, I am 54 years old and live in Northern Sydney. My story starts at the beginning of February 2014 when I started to notice some strange changes on my body. I have been fortunate in life as I have had very few illnesses and enjoyed good health by having a sensible diet and exercising each morning to try and remain fit. I have had my own consultancy business for over 25 years now which has always been busy but in the latter quarter of 2013 and into 2014 had become extremely busy.

Robert’s Diagnoses

It was on the first Sunday in February that my wife noticed a large bruise on my thigh. I had no idea why this was there as I had no recollection of bumping it and thought that I must have unknowingly done so whilst mowing the lawns and put it down to that. I had also noticed that there were small amounts of blood whenever I blew my nose, even just lightly, and there seemed to be small red dots on my lower legs but I convinced myself that maybe I was just imagining these as I felt perfectly normal.

Over the course of the week I noticed that I was getting more of these large bruises which I kept these hidden from my wife as she was concerned with the ill health of her Grandmother and also one of my children was not well and so I didn’t want to worry her. Continue reading

Missing Appointments

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ITP treatment, ITP therapy, ITP chronicShit! So, I think I missed an appointment with my Haematologist last week.  I must have written it into the wrong month…  Oh yes, there it is in September, a month ahead.  Dam it.

If your Haematologist is anything like mine, you will understand how scared I am right now.  She is short and unassuming to look at, but once you get her on the wrong side of a treatment plan, you find yourself bumbling over her desk making up excuses.

Hmm, how to get another appointment without getting a talking to.

I’m scared – Help!!