Christmas Books

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Feature image from BOOKSHELFPORN

Simple gift ideas for people with ITP and Autoimmune disorders, or perhaps a nice selection for yourself.  These books will make excellent presents and insightful holiday reading.  Enjoy.

ITP and Christmas, gifts for people with ITP, Blood disease itp, itp platelet disease, itp autoimmune diseaseWOMEN AND AUTOIMMUNE DISEASE, by Robert G. Lahita

The mysterious ways your body betrays itself. Robert G. Lahita, is the doctor who wrote the textbook on autoimmune disease for medical professionals, as well as a layperson’s book on rheumatoid arthritis.  Here he concentrates here on how autoimmune diseases afflict women, who make up 75% of cases nationwide.

A cutting-edge examination of the mysterious world of autoimmune disease—and the new discoveries made daily that may save women’s lives.  Through case studies, he reveals the early warning signs, symptoms, diagnostic processes, and the most innovative treatments for all the most common—and many of the less well known—autoimmune diseases. He offers a scientifically sound and sensitive work that is the best resource available to help understand these perplexing and debilitating diseases.

Make Peace with your Plate, wellness warrior, ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp.MAKE PEACE WITH YOUR PLATE, by Jess Ainscough

Jess tragically passed away in February of this year and while her blog is currently (at the time of writing this post) inactive, there is a lot to be said about her positive message.  Jess Ainscough was a warrior of joy, health, positive body image, following you instincts, nurturing your body, and making peace with food.

Her book is a wonderful read with great recipes and an obtainable message.  Take care of yourself as best you possibly can with as much information as you have at the time. Continue reading

Cheryl

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I would like to add to Robert’s story if I may, and tell you about my experience with ITP.

I lived in Australia at the time but was on holiday in New Zealand when I was diagnosed. That was two years ago in December 2012. I was 57 and had a platelet level of 4,000. Before this time I had previously been fit and healthy, although recently under a lot of stress. Over the course of the first year I was on the same roller coaster Robert describes. I had all the tests and infusions. My platelets went up and down, and the dose of Prednisone increased or decreased to try and manage it.

After being on high doses of prednisone for so long the side effects were awful. I didn’t recognise the big moon face staring back at me from the mirror, and my brain was in a fog. Because of this fog I went along with what the doctors were telling me. They had said at the beginning my best option was to have my spleen removed. I resisted for as long as I could, but in October 2013 I finally gave in because I had to get off the prednisone. After the operation my platelets went from 6,000 to 665,000. Things looked promising and I started to reduce the dose of prednisone very slowly. But less than four weeks later they had plunged to 9,000. The splenectomy was a failure and I had to increase the prednisone again.

I didn’t want to accept what everyone says about ITP; that there is no known cause and no known cure. With my platelets hovering between 13,000 and 73,000, over the next two months I wracked my brains to try and think what might have happened in my body to cause my immune system to go haywire. It took all of that time to realise it was actually a chain of events that triggered it. I believe it started with my overuse of Nurofen which I was taking for chronic back pain. Nurofen contains the analgesic ibuprofen, an NSAID. Nurofen is known to damage the intestinal lining if overused, causing a permeable gut. I only discovered this after I had a bleed. I stopped taking it immediately but by then the damage had been done.

With toxins now leaking from my gut into my body, my immune system went into overdrive. This led to an acute sensitivity to salicylates, a naturally occurring chemical found in most foods which I’d had in a mild form all my life without realising it. Now I had IBS in a big way but still didn’t know it was salicylate intolerance. It started very suddenly and at first I thought it was gastro. But it kept happening after nearly everything I ate. I was losing weight fast. My doctor sent me for lots of tests which all came back negative. He didn’t know about salicylates so just said to take antacid when I needed it. Continue reading

The Most Stylish Paleo Eater in the World

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So I know that this actually has got nothing to do with having ITP – but here at my house at the moment there has been a lot of talk about Paleo in our kitchen.  After stumbling across an old interview from 1952 where Marilyn Monroe spoke about her oddly Paleo eating habits.

“I’m sure that I couldn’t allow myself this indulgence were it not that my normal diet is composed almost totally of protein foods.”

Continue reading

Pt One – How to Host an ITP Awareness Day

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In the lead up to this years ITP Awareness Day, September 26th (Yes , yes we know it is technically the official day for America not Australia – Don’t be a party pooper!  Australia doesn’t have a day yet ) we are getting a little excited.  ITP and Me have been doing a little bit of party planning and want to share a few helpful tips to make sure you have the best ITP Awareness day EVER!

Firstly, Drinks

What to serve those thirsty guests who have come all the way to your ITP Awareness day party, only to arrive dehydrated and looking for something to sip on as the mingle with your guests?  It is important to always give all your guests a prop or something they can play with while they are in the company of strangers.  It is all about making people feel relaxed and hydrated.

We suggest serving a very dark bloody juice, to get people talking.  After a few experiments in the juice department this one looks like the crowd favourite.  I have written before about the benefits of drinking juice here, Juicing – The Best Explaination and now it is time to put that into practice at your very own ITP awareness a party.

IVIG Beetroot Juice

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  1. 3 carrots
  2. 3 strawberries
  3. a beetroot
  4. an orange or lemon
  5. ginger to taste

This IVIG Beetroot Juice will actually be very beneficial for any guests who have ITP.  Ginger is a great anti-inflammatory and contains minerals that are good for the heart such as magnesium and copper.  Oranges are packed with Vitamin C and you’ll get lots of Vitamin A and K from the Carrots and Beetroots; along with a dash of anti oxidants from the strawberries.  For my favorite juicer, I can’t go past the cold press, slow masticating juicer I have at home.  Yummy!

Sangria

itp awareness day, ITP Party

  1. bottle of red wine
  2. bottle of lemonade
  3. cup of orange juice
  4. chopped fruit to serve.

Sangria is one of the easiest cocktails you can make for a party and is perfect for lots of guests.  You can make a big batch of it in a jug and let people help themselves.  It is also easy to quickly made a bit more in case you run out, just have the garnish fruit chopping in the fridge and ready to go.

 

More to come…

Over the next three weeks, we will be posting more handy tips about decorating your house for the party, which fun foods to serve and how to provide some quality entertainment for your ITP Awareness Day.  We may even throw in a few ways that you could raise awareness and perhaps even some money for ITP Awareness.  Stay tuned for Part Two.

Calcium and ITP

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Feature image from PINTEREST

Natural Calcium

Calcium is the fifth most abundant element by mass in the earths crust.  It is also the fifth most abundant ion dissolved in seawater.  Calcium is essential for all living organisms; in particular their cell physiology, and humans are no exception.  As a major material used in the mineralization of bones, calcium is the most abundant metal on mass in the human body.  Without enough Calcium in your system you are in trouble.  Did you know that Prednisone leaches calcium from your bones?

Taking Prednisone? Take Calcium too

If you are taking any amount of Prednisone on a daily basis then you absolutely need to be increasing your calcium intake, either through diet or with a supplement.  There seems to be a grey area in the Medical profession at the moment about how much prednisone requires a Calcium and Vitamin D supplementation.  All I can say about this is that any amount of Prednisone is too much and every possible precaution should be taken to avoid developing Steroid-Induced Osteoporosis.

Steroid-Induced Osteoporosis

Osteoporosis is a weakening of the bones, which causes them to lose their density and become brittle and more susceptible to fracture.  Your bones are the organs that produce your blood.  Your bones make your platelets!  Your bones are not something that can be replaced with metal if they are broken or too weak.  Long-Term steroid use weakens your bones, as the Prednisone will leach Calcium from them.

Calcium Absorption

Calcium is absorbed in the small intestine.  This absorption is aided by the presences of Vitamin D in your system at the time of the Calcium uptake.  Most people on Prednisone will need between 1000 to 1500 mg of calcium per day.

The Top 5 ways to increase you Calcium, Naturally

    •  
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      Full cream milk

      Milk (Dairy ) So the best source of Dietary Calcium is of course Dairy.  Australians are very lucky with the quality and quantity of Dairy products available here.   We are able to access a variety of milk, yoghurt, cheeses, cream and curds.  If you are looking for more calcium, then this is where you find it. However, if like me, you have switched to an anti inflammatory diet such as the Paleo Diet, then you will need to look for non dairy sources of Calcium.  I still consume a bit of milk cause I love the Vitamin D + Calcium combo, but a small amount of milk is not enough.

    • help with itp
      sun dried little fish

      Tiny fish (with the bones)  These tiny fish would include Anchovies, White Bait or Sardines.  Canned salmon and other fish are also sold with the bones included, but you would need to read the label.  Eating these fish will provide you with a nice dose of fish oil, probably a bit of Vitamin D, and a whole lot of Calcium.  What better food to eat for bone health than another animal’s healthy bones.  If you are looking for the next best source of Calcium after dairy, then this is it.

  • Seaweed Sushi rolls, Japanese – get the fatty fish and the seed weed together.  The only chance I get to eat seaweed is in Japanese and Korean restaurants.  If anyone knows any great Nori recipes please let me know.
itp vitamins and supplements
Chia seeds
  • Seeds  If you are a vegetarian or Vegan, then the Calcium in seeds will be a great natural healthy source.  Seeds can sometimes be overlooked because they are so small, but it is because of their size that they can easily be incorporated into any dish.  They are easy to sprinkle over salad or add to sauces and bakes,  mash up with vegies, or include in a stir-fry – actually everything could benefit from a little sprinkling of seeds.  Seeds high in Calcium include Chia Seeds, Flax Seeds or Linseeds, depending on where you are from and Sesame Seeds or Tahini will work just as well.
  • itp vitamins and supplements
    roasted almonds

    Almonds  Almonds are the Paleo Dieters dream.  These tasty little nuts may be used for sweet and savory dishes, blended into a baking meal or eaten by the handful between lunch and dinner.  Aim to always have a supply of Almonds in your house, just stay clear of the salted kind – Salted Almonds are moreish and a huge no no for people taking Prednisone.  To read more about staying away from Salt, click here.

 

Life Expectancy for ITP Patients

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Warning – This article contains spoilers of what might be install for you.  If you wish to remain ignorant then don’t read on.  You can’t un-know something.

A few days ago, I received a harmless email from our assistant Charmaine, saying she had written up a summary of the research I asked for.  It wasn’t a big deal.  A few weeks ago I asked her to investigate the impact of ITP on predicted life expectancy for a blog post I wanted to write.  This one.  I had told her there was no rush with the research and to send it through when she had found something.

I did not expect her email to change how I thought about my life.

Life Expectancy

This is what she sent me.  ‘Based on the conducted research, Cohen, et al. predicted that a 30-year old woman remaining thrombocytopenic due to ITP would lose 20.4 years (14.9 quality-adjusted life years) of her potential life expectancy. At age 70, predicted loss was 9.4 years.  So, if a woman in her 20’s finds out that she has ITP, her predicted life span would be up to her 50’s.’

She concluded that a persistently low platelet count was a grave prognosis.

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Google Search Results for ITP Life Expectancy

As you can imagine I completely flipped out.   Fuck!  I am 28 years old now.  If I continue to act like an average person, then I will have an average of 22 years left…from now.  I couldn’t believe it.  I felt so sad and then suddenly annoyed.  I felt cheated that nobody had told me this sooner, and stupid for not searching myself.  I felt so naive for never asking more questions and confused about what it all really meant.

I wished I never knew…

And then, I sat down, made a plan and decided to get to the bottom of where this number came from and how I could make it disappear.

My Own Research

I followed up the articles that Charmaine had sent me.   I slowly read through each of them, trying to digest the dense medical terminology.  I got very confused and found myself getting mixed up between life expectancy and life quality; the difference between Chronic ITP and Acute ITP.  I am not a doctor and could not read the articles, but I tried.

My eyes where hurting and I had 6 different tabs open on the internet, I leaned back in my chair and told myself I couldn’t do this…  And that’s when I noticed something interesting.

The article I was reading was published in 2006.  It was old.  It was 8 years old!  Another article was from 2000.

Yes! I thought – Surely things have improved in the last few years.  Medical research is developing quite rapidly I would think.  My prognosis must not be all that bad after all…But I kept reading.  Everywhere I looked it was evident that ITP would have an impact on my predicted life expectancy.

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Obviously the Internet is the worst place ever to investigate medicine, so I asked my doctor(s).

They made it clear that those figures where indeed older than they should be; and that yes, things have improved and are always improving for ITP patients.

‘How much of an improvement?’ I asked.

‘We don’t know.’

My doctors stressed that these number where just averages.  I am sure they were trying to make me feel better but all I took from the conversation was that a lot of people must be dying earlier too!  Fuck again!

My doctors said it is very important to not get carried away with numbers and averages and studies on people that aren’t you – Everyone is different.  If you never heard this number before – It wouldn’t matter.  The facts would still be the facts and you may or may not outlive your life expectancy.  They all told me the best thing you can do is to live a healthy life and take care of yourself and your body.

The Problem the Research is…

The problem with reading the research is, statistics can be made to show anything.  Research can be flawed.  Tests are performed on very small testing groups.  Patients with ITP are hard to find and even harder to test on.  Everyone with ITP is different.  The selection pool is little and the statistics are tiny.

A Medical Research Scientist contacted me by phone a few months ago to see if I would be interested in participating in a clinical trial for ITP.  I said, ‘Yes’.  He then asked me a number of questions to make sure I was eligible.

  1. I had to be within a certain age range – TICK
  2. I had to have had ITP for more than 2 years – TICK.
  3. I had to not be pregnant or breastfeeding – TICK
  4. I had to have a platelet count lower than 50 – TICK
  5. I had to not be receiving any medical treatment or taken any treatment in the last 6 months…… UM – WHAT???

This man could not find anyone to participate in his study.  He doubted he would find anyone to participate.  People with ITP are hard to find, and when he does someone to study – they are not eligible.  ITP behaves and manifests itself so differently in all of us.

This scientist was taking his findings back to the medical research board to explain the problems he was having in finding candidates.  ‘Would you be interested in not taking medication to participate?’ he asked  as a very last chance.  ‘Um…No’  I replied.

The Good News – Choosing not to be ‘Average’

So I started to feel better.   I decided that this number was not for me.  I was not having it.

If you are wondering why no doctor has told you your dramatically shortened life expectancy – It’s because it doesn’t apply to you.  Not anymore.  Not if you are smart and healthy and take care of yourself.  Not if you start to understand your body and educate yourself about how to be ‘well’.

There are always things you can do to change your diet, take vitamins and supplements such as Blood Well.  To be aware of this number, I started to think is quite liberating.  After making peace with it, I now have the motivation I was looking for to take on more holistic forms of treatment.  I am going to really learn what it is to be healthy.

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