Have You Heard of Louise Hay?

You can heal your life

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I have known about Louise Hay for a while.  I thought everyone knew about her work, and her company Hay House.  I was surprised to discover just how many people have not heard of Louise Hay, considering how widely successful and interesting she is.

Through Louise’s healing techniques and positive philosophy, millions have learned how to create more of what they want in their lives, including more wellness in their bodies, minds, and spirits.  Louise was able to put her philosophies into practice when she was diagnosed with cancer. She considered the alternatives to surgery and drugs, and instead developed an intensive program of affirmations, visualization, nutritional cleansing, and psychotherapy. Within six months, she was completely healed of cancer.  Louise Hay [dot] com

Louise Hay is a motivational speaker, alternative health practitioner, writer and public figure.  She is also the founder of HAY HOUSE Publishing.  Hay House Publishing begun as a small project run from her house, which grew into a hugely successful international publishing company.  Hay House Publishing focus on self-help books and have all the big names on their list.  Check them out.  These guys are the ones that published Jess Ainscough’s book, MAKE PEACE WITH YOUR PLATE.
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It’s Time to Say Thanks

- ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp.

I just read a quote online that says ‘The only thing tough enough to beat you – is yourself’.  It was referring to the fact that with ITP and all autoimmune disorders; it is in fact our own bodies that are the problem.  It was a funny quote – but I really don’t think it is a constructive way to look at things.  I don’t think our bodies are trying to hurt us.  I don’t think our bodies are trying to make life difficult.

I genuinely believe that our bodies are trying to do what they think is best.  Our immune systems have just been a little bit misguided, but at least they haven’t given up on us all together.  Take your autoimmune disorder as a blessing – if you can – because our immune systems are trying to tell us that we are worth fighting for.

It’s time to say Thank you to your immune system for working so hard.

After all…It’s the thought that counts.

Life Expectancy for ITP Patients

ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp.

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.

BRUISES - ITP, bruising easily, hide a bruise, Bruises, Bruise, itp, low platelet count,  Treatment - Treatment for itp, treatment of itp, treatment itp, itp treatments, Side Effects Prednisone,
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.

life expectancy, Treatment for itp, treatment of itp, treatment itp, itp treatments, Side Effects Prednisone, Talking to a Doctor

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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Livingston’s Meredith Prescott to Hold 5K Fundraising Run

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After a very successful event, raising over $45,000, I decided to plan my second 5k walk/run this June with another fighter, Linda McGuirl, to find a cure and help rid this world of ITP. Linda and I were both diagnosed at 21, and although we are decades apart in age, we both take strong pride in raising awareness and taking control of ITP. Riding the roller coaster in the world of ITP is so much better when you’re not riding alone.

Don’t let your compassion stop at wishing to see others free from suffering. Do something.

To pre-register, or make a donation or for more information, visit this link.

Registration/Check-in will begin at 12:00pm and the event will begin at 12:30pm at the Livingston Oval in Livingston, NJ on Sunday, June 8th.

If you can’t make it to the run but you would still like to be a part of raising itp Awareness, you can join the dicussion on Instagram.  Lots of itp patients are spreading the itp awareness love at Hashtag #itpawareness!  Share your photos today.