Is Your ITP Forever?

ITP, low platelet count, low platelets, platelets low, ITP disease, immune system disease, living with itp, blood disorder, Chronic itp, platelets,

Feature image from DANIELLEKLOCKE

I recently found this image online while I was looking for pictures of activated platelets.  I could not stop thinking about it.  I still can’t…

Tattoos are forever.

I keep wondering about the permanence of this tattoo, and how it has come to so literally define this ITP patient.  Obviously it would need to be in a easy to read part of the body where anyone could find it quickly.  On the arm, this person would see it every day.  People probably ask about I.T.P everyday because of that tattoo. Continue reading

How Do You Want to be Treated?

ITP treatments, living with ITP, Struggling with ITP

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?

 

Meditation & Relaxation. How I Got it So Wrong

Treatment for itp, treatment of itp, treatment itp, itp treatments, Side Effects Prednisone

On Saturday I did nothing.  Not nothing as in, I did the washing and cleaned the house and called old friends and made casseroles for my neighbours kind of nothing, I mean actually nothing.  On Saturday I woke up at 9 am and did not get out of bed until 11am.  From here I headed straight to the beach.  No shower, no breakfast just pulled on some clothes and left.  By 12 I was drinking coffee, lying in the sun reading Gone Girl and walking with my feet in the water.  At 3pm I was hot and a little pink from the sun so I headed home to sleep off the day on the couch watching movies.  

Sounds like the prefect day?  It wasn’t.

I actually felt terrible the whole time.  I felt like I had wasted my day.  I had thought that I needed some time to relax and move slowly, instead I was just panicked more because relaxing felt selfish.  Apparently doing nothing makes me feel really guilty.

I hear time and time again that ITP and autoimmune disorders are stress related.  I have read that autoimmune disorders and diseases are linked to inflammation, stress and lifestyle.  I keep being told that Meditation and Relaxation is such a great treatment for ITP.  The PDSA website claims that meditation and relaxation are the most popular alternative treatment for people with ITP.  But I can’t do it!!  I just can’t seem to do it at all!

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The Seven Stages of ITP

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, bleeding disorder

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

Have You Heard of Louise Hay?

You can heal your life

Feature image from AMAZON

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.