How to Heal A Bruise, An ITP Book

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For Patients and Parents living with ITP,

how to heal a bruise, low Platelets, platelets low, platelet count, what is itp, low platelet counts, itp blood, itp platelets, itp blood disease, itp autoimmune disease, itp blogs, blogs about itp, A Book

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.

Sue

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‘Sue’s Story’

A little bit about you – I am 53 years old and have lived in Melbourne, Australia all my life. I work in the accounts department of a Law firm and have done so for the past ten years.  My passions in life are photography, gardening, travel and writing poetry and I have been doing a lot of the latter since being diagnosed with ITP.  I have been married to Andrew for 27 years and we have a 23 year old daughter named Elysa.  When I was 8 years old I fell off a slide and had my spleen removed.

How were you diagnosed –

On the morning of the 2nd of February this year I awoke feeling unwell and when I got out of the shower I noticed a strange, large oval shaped bruise on my right forearm.  I had never seen anything like this before.  It was raised and very tender to touch.  I also discovered a large black blister on the side of my tongue which was very confronting as I’d never seen anything like this before either.  Over the past week or so I had also noticed tiny pin pricks of blood beneath my eyebrows and a few on my cheeks but didn’t really give them a second thought.  My mind started racing and I immediately thought it was something to do with my immune system and the fact that I didn’t have a spleen.  I didn’t know whether to wake my husband or what to do but felt an urgent need to get to the doctor so made a morning appointment.  I told my doctor about the turn of events that morning and said I’d been feeling tired over Christmas but put it down to the hot weather and being such a busy time of year.  Also, last year had been extremely stressful as my mother was battling anxiety and depression and was about to move into a retirement home, as well as selling the family home.

My doctor looked at the bruise on my arm and the blister on my tongue and said she thought it might be something to do with my platelets and ordered me to get some urgent blood tests.  I went back to work and at 2:20 pm received a phone call that terrified me.  It was my doctor ringing me and telling me to get to the Alfred Hospital immediately as my platelet count was down to 5,000.  I handed the phone to my workmate as I was not comprehending all the doctor was saying and before I knew it my husband was driving me to the Alfred.  Before too long I was admitted and monitored until I saw a doctor who told me they were in the process of sourcing some special blood (yellow) in order to give me an IVIg transfusion.  In the meantime they explained that they would give me some steroid tablets.  At 8:00 pm I was given my first dose of Prednisolone (80mgs) and at 11:00 pm they started the IVIg transfusion which finished at about 7:30 am so needless to say I hardly slept that night.

I was told the next day my condition was called ITP and I spent the next three days in hospital and since the week after I have been having regular blood tests and visits to the Haematologist at the Alfred.  My last platelet count on 7th March was at 488,000 which was a huge improvement.  I have slowly been weaned off the Prednisolone over the past weeks and on Wednesday 30th March I stopped taking it altogether.

Well, the side effects were horrendous with the worst initially being insomnia, fatigue, feeling hyper then depressed very quickly, twitching in my muscles, weakness in my legs etc.  Other symptoms would come and go but in the past week the depression is much worse, as is the weakness in my legs and the fatigue.  The feeling of being hyper, I have not felt for a couple of weeks now, I guess due to the reduction in the medication.  Strangely I’ve been feeling worse since being on a lower dose.  I am feeling very apprehensive about what side effects I might have now I am completely off the medication but try not to think about it.  I go back to the hospital for an update on condition on Monday 4th April and see where I go from there.

How were you feeling before you was diagnosed?

My illness took me by surprise, although when I look back it could have a lot to do with my concern and worry for my mother.  I hadn’t been sick other than feeling very tired over the Christmas period but put this down to the hot weather and being such a busy time of year.  I also had a sore on my leg that just wasn’t healing but it turned out that was nothing to do with my illness. 

When your platelets drop…

I’m a bit concerned about a relapse and wonder whether I’ll have some idea beforehand that something is wrong next time?

Stress is…

After my diagnosis my Osteopath suggested that the cause may have been due to stress re my Mum and I tend to agree with him.  To combat stress in my life I get out in my garden or down to the beach and take sunset photos.

Heat – As I currently at the menopause stage I find it difficult to know whether my hot flushes are from menopause or ITP.  Before my diagnosis I would suffer hot flushes at random during the day but mostly at night while asleep.

Sleep – Up until my diagnosis I was a pretty good sleeper but in the first few weeks I was averaging about 3 – 4 hours sleep and I was up at around 4:30 – 5:00 am as I couldn’t sleep and this lack of sleep eventually caught up with me.  As I lowered my dose of Prednisolone my sleeping has improved although I wake up at least 2 – 3 times a night but manage to go back to sleep.  I have always been a morning person and generally wake up around 6 am every morning and am usually in bed by 10 pm reading for ½ an hour or so before turning off the light.  I generally cope okay with 6 – 7 hours sleep.

Exercise – I generally do pilates once a week for an hour and my husband and I do ½ an hour with a personal trainer every Saturday morning but since being diagnosed I feel so exhausted every day that I have no interest in exercise.  I just don’t think I’d be able to do it as my energy levels are so low, particularly by the end of the day.

Appetite – My appetite is still okay but in the past week I have felt nauseous some days so don’t feel so hungry. 

Moods – I seem to get upset very easily and when I was on the higher dose I’d get angry which was very unlike me.  As the depression got worse I cry very easily and feel very flat at some stage on most days.  Sometimes I feel down the whole day and just can’t seem to lift myself out of it.  I manage to hide how I really feel from others.

How has my life changed since my diagnosis? – My main fear is what does my diagnosis mean re my life expectancy.  It terrifies me but I can’t stop thinking about it.  I want to continue to pursue my love of travel and we have a sponsor child in Bali who we will visit next year.  I just made an appointment with my GP to ask her some questions re my concerns but she may not have the answers I seek?

Worst / funniest injury – I’ve had a very colorful life re injuries/operations etc.  In 1971 I had my spleen removed, I’ve had two shoulder operations in the space of two years (on different shoulders) and I suffered a spontaneous pneumothorax (collapsed lung) which I only recently discovered was due to a Myotherapist putting the needle (re dry needling procedure) in the wrong place, hence  causing the lung to collapse.  Now I have ITP to add to my impressive list – never a dull moment with me!!

Dealing with ‘being sick’ – At the moment there are still many unanswered questions re my illness and up until I discovered ITPandMe I struggled to find much information at all about ITP, as I’m sure many of you can relate.  It surprised me that the people who have cared the most are those I hardly know.  Some people still have not contacted me to see how I’m going and that has disappointed me greatly.

I also write poetry when I am extremely emotional about something.  This is one I wrote about my recent illness :

OKAY ON THE OUTSIDE

I hide behind a mask

Of fear and uncertainty

As my illness takes control

It’s almost got the best of me

I make out that I’m okay

But you probably wouldn’t know

If you scratch beneath the surface

You’ll see I’ve lost my golden glow

I look okay on the outside

But there is much you cannot see

The medication is horrendous

And I’m not the same old me

There are visits to the hospital

And blood tests every week

My life has changed so much

But it’s normality I seek

My body feels so weak

Even though my mind stays strong

I wish I had a crystal ball

I just wish I knew how long?

Sue Tancheff

18th February 2016

ITP Pregnancy, The Birth

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 Feature image from ITP&ME

In the first few days after my son was born, I couldn’t shake this feeling that I had let him down in some way.  I kept thinking there must have been something I could have done better, some sign I could have noticed earlier, another hour bouncing on the fit ball, or another 20 minutes inverted off the couch, that might have made his entry into the world a little calmer, happier and healthier.  

In the first weeks, I slept terribly.  I was happy, don’t get me wrong.  I was having the most wonderful time during the day and into the night with him.  But just in those moments right before I drifted off to sleep, I would replay the birth in my mind, looking at all the little moments I should have done something differently.

Don’t worry.  My feelings about of the birth have changed a lot since then.  

The more information I have and the more I come to understand the events, the prouder I am about how everything happened.  As I learn about footling breech births, remember more and more, and as I speak to other women about their birth stories, I’m starting to consider the whole thing an incredible fucking success.  

I am glad I waited a little while before writing this.  Had I written this article earlier, it may have sounded like a completely different story.  So here it is… The story of our ITP Baby.  

(In saying that, I don’t believe it is possible to ever really tell your birthing story.  There is no way to sum it all up or convey everything that happened.  When I talk about the birth of our son with others, I find my words falling so short of the mark; such a blunt instrument to play such a complex sound.)

The birth of my son was a triumph over the medical profession’s interpretation of a high-risk pregnancy.  It is considered legendary among midwives and doctors.  It was beautiful.  But it was nothing like the sacred feminine worship, I was lead to believe birth was (could be).   Continue reading

Regina

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Welcome to Regina's Story

We like to ask all sorts of questions here, from the diagnosis story, to how patients with ITP sleep.  How they deal with stress and how they feel when their platelets are falling, appetite, mood and how their life has changed since ITP – Funniest or worst injury and how they manage ‘being sick’…  Every ITP story is different.  Enjoy.

A little bit about me

I live in Pennsylvania and have always enjoyed an active lifestyle. I also enjoy reading, playing piano, singing, horseback riding, and animals of any kind. ☺ I was born in January 2002.

How I was diagnosed and my journey so far…

When I was about 6 or 7 years old I started getting big bruises all over my body for absolutely no reason at all. My mom then took me to the doctor and he did some bloodwork. We got the results back late that night and my count was at 8,000.

The doctor thought I might have leukemia and told us to go up to Hershey right away. When we got there they did a lot of testing and early the next morning they informed us that I had ITP. They gave me IVIG which made my platelet counts go up to about 100,000 but they went back down a few days later and the treatment made me very sick /nauseous /headache /exhausted. This was during my first year of school.

After that they pretty much watched and waited. I had weekly blood tests taken, and went up to Hershey Medical every few weeks or so. After about 4 months of this, my platelet counts started slowly rising… but they never went back up to a normal count (150,000-400,000). They rose up to a stable area though of 60,000 to 70,000 and stayed there for about 7 years. During this time that my platelet counts were stable I lived a totally normal life and was able to be active again. Continue reading

Four Years of ITP & Me

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Feature image from STUDENTSWIFE

It’s time to celebrate 4 years of ITP & Me.

A year ago today, I wrote a blog post about THREE YEARS of ITP & Me.  At the time, my hopes for the future were that I would be able to have kids with my ITP and write about the whole process.

That dream has now come true, as I am sure all heard. Our son was born just a few weeks ago with a wonderful platelet count and not a sign of my antibodies staying in his system.

Now my hopes for the future are to change the perception of ITP around pregnancy and birth.  During my pregnancy, it became clear that there is a strong culture if fear around ITP and pregnancy.

I’m now working on a new book this year which should be out in September 2017.

I’m so grateful to all the EMAILS and messages received through itp.and.me.g@gmail.com and via the comments on the website.  Now more than 10 000 people come to ITP & Me a month looking for information, help, advice and tips for living with ITP.

Thank you to everyone who has SHARED THEIR STORY with us here.

Cheers, Meg

Clarissa

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Feature image from CLARISSA

Hello, my name is Clarissa and I was diagnosed with ITP November 3rd, 2015. I currently live in Minnesota. I am a teacher and a single mom to 2 little boys ages 6 and 4. On Halloween morning 2015 I woke up with bruises all over my arms. I honestly didn’t know how I got them, but my family joked about how my youngest beat me up in his sleep (he co-sleeps with me and is a tosser).

I really didn’t think much of the bruises except that it was weird they were all over my arms, so we went trick or treating as planned. I hadn’t felt sick or tired or really anything out of the normal before this, so I wasn’t really sure what was going on. The next day I seemed to have developed more bruises on my legs, again brushing it off to my son’s tossing and turning.

On Monday when I went to work I found even more bruises and throughout the day they were getting darker and bigger. I called my doctor and she told me to get in to urgent care right away. After work I picked up my kids and headed in. They ran blood tests and my platelets levels came back at 0. Continue reading

Patient Guide to ITP, Health Monitor

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Featured image from GUIDE2ITP

Did you know the people who created ITP PLATELET TRACKER for your smartphone also produce an ITP MAGAZINE?  Well, they do, and the latest edition is available now.  You can download the magazine for free or ask for a printed edition to be sent to your home.

It contains lots of information about treatment options, managing platelet counts and questions to ask your haematologist. There are also a few stories from ITP patients and helpful lifestyle tips.

Guide 2 ITP is produced by the company AMGEN who make the ITP treatment NPLATE (Romiplostim). This is why the magazine contains ads for Nplate as an ITP treatment.

Here is the INTERVIEW I did with Health Monitor in WINTER 2015.