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!

Continue reading

The Cycle

Itp and pregnancy, pregnancy complications, pregnancy information, pregnancy facts, itp pregnancy complications, Pregnancy and immune suppressants,

Feature image from ITPANDME

Menstruation, one of the most subjective topics for women with bleeding disorders.  The most common bleeding disorder is still von Willebrand Disease, which is caused by a defect in the bodies ability to produce a protein that helps the blood clot.  VON WILLEBRAND Disease effects both men and women, but women are far more likely to be diagnosed with the disease because of the most obvious symptom of heavy or abnormal bleeding during menstruation.

In fact, heavy bleeding during menstruation is a common means of diagnosing a lot of platelet disorders in women.  “Of all women with excessive menstrual bleeding, up to 50% will have a bleeding disorder,” says Deborah L. Brown, MD, an associate professor of pediatrics at the University of Texas Health Science Center in Houston. “This is a common problem among women of reproductive age.”  2007

When I was first diagnosed with ITP I was given a hormone drug to prevent menstruation.  My platelet count was so low that getting my period was considered dangerous but I had not noticed anything strange in the lead up to my disorder.  I had not noticed particularly heavy bleeding.

It is said, that women with ITP have a heavy flow (Read stories HERE and HERE and HERE) but whose to say what a ‘heavy’ flow is?  I certainly have never seen anyone else’s…

There is a lot of information online telling women with a ‘Heavy Flow’ to head to the doctor and get themselves checked for bleeding disorders.  Once diagnosed however, there is not very much information about what you can actually do to deal with this particular issue.

I was inspired to write this post because I was certain I would be able to help in some way, but the more I think about it the more I am at a loss.  What I have found, in the last 5 years is that, very simply, everyone is different – Every woman menstruates differently – Every period for that woman is different – Every doctor, friend and partner interprets your period differently – And most importantly, no one will ever know how it feels for you.

So how can we help each other?  Perhaps all we can do is open up about it.  Hopefully it might dispel a few myths about what an abnormal cycle is.

Mine is always different, totally irregular, very unpredictable and quite light at times.  So while I have heard that ITP woman can have a very heavy bleed, I can tell you that it is not always the case – not for me anyway.  Some times it comes on hard and strong.  (The longest lasted 4 weeks – and yes I certainly went to the doctor)  Other times I barely notice it passing.  For me, the issue is irregularity, unpredictability and very inconsistent symptoms.

What do I do?  I map it and pay attention.  What felt like total chaos started to make a bit more sense to me.  I begun to see that I have a very long cycle then a very short cycle.  Before you can start to really manage your period, I suggest you get to know it first.  Knowing how your body works is the best way of knowing when things are different.

There are plenty of ways to follow your cycle, like a diary, or a paper period journal but I prefer to use something like an electronic diary specially designed to log, track and predict your cycle, flow, symptoms and moods.  There are many to choose from, if you search ‘period’ into The App Store or Google Play.

ITP and period, ITP menstruation
Period Tracker
Period apps for ITP
iPeriod
Period Calendar
Period Calendar

 

 

 

 

 

For me it is important to know and understand my moods in relation to my period.  This is so I can separate my symptoms from low platelet moods.

Knowing your own ideas of a ‘Heavy’ flow will mean that you can compare your symptoms to your symptoms alone.

So here are some of the issues I am facing, perhaps you are too.  When it is heavy, my energy levels can plummet along with my libido.  I feel out of sync with those around me and are distracted by always having my period on my mind.  I feel uncomfortable and restricted.  I struggle with feeling self aware and self obsessed and incredibly conscious of my body.

I can become quite negative during this time, frustrated that I have to deal with heavy bleeding.  And sad – that no one else has to deal with as much shit as me!  (I know, so much self pity!)

Sometimes there is not a lot I can do.  And I certainly wish I could offer more help than this.

Yeah I’ve been there…  Yeah it’s heaps shit!

How to Brush your Hair

how to brush your hair, ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp, blood disorder

Feature image from MOTHGIRLWINGS

How to Brush your Hair

Firstly, find yourself a BOAR HAIR Bristle Brush.

The boar hairs on your hair brush are packed so tightly together that the first function it performs is to remove dust, lint, dried skin and other foreign items from you hair.  It cleans your hair.  And it cleans your hair well.  But it also massages you scalp, encourages oil production and evenly distributes the natural oil down the hair shaft.  So with this in mind, be very mindful of how you brush.

1. Dry your hair thoroughly.  Then detangle your hair carefully with a comb.

2. Divide the hair into sections, starting with the hair between your ears, falling down your neck.  This way you can slowly work you way up the back of your head and over the top to the front.

3.  Starting at the tips, brush slowly up the hair shaft towards the scalp.  You should be going over and over the same place until it feels noticeably smooth, then move up the hair.

4. Once you reach the scalp, make good contact with the bristles to the scalp and brush all the way down the hair a few times.

5. Continue letting our more hair from above, and move through each section until all of your hair has been brushed.  The longer you brush the more you hair will change.

6. You can continue to brush until your hair becomes noticeably oily.

This is when the hair is quite shiny but heavy and falls against the scalp quite flat.  If you are going to brush for a long time I suggest right before bed time, as you will be able to sleep with the oil in your hair, when no one can see how stupid you hair looks and you can wash it thoroughly in the morning.  Follow the above process as often as possible.  Remember that your hair is very different now, and far more fragile.  Prednisone and steroids will be aging your hair.  Brushing your hair properly is the best and more natural therapy I have found to keep it looking fantastic.

Remember, you cannot over brush your hair (if you are doing it right)

A Boar Hair Brush

Beauty with ITP, ITP hair, ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp, blood disorder

Feature image from FASTERHAIR.NET

You need to get one of these

Make sure it is 100% boar hair.  I use a DeVille 100% Boar Bristle Brush by Spornette and it is the best brush I have owned.  This one pictures here is mine.  They are really affordable and last for ages.  I have had mine for a few years now and still looks fantastic.

Choosing Your Brush

If you are going to choose another brush make sure that it fits in with the following; choose a hair brush with a wide face with as many bristles as possible.  Check the tips are yellowish brown and not the other way around.  You want the yellow bits on the outside, so they are soft against your scalp.

Say away from a brush which has plastic bristles.  If the bristles are made or plastic they will be too smooth to massage about and move the natural oil around your hair.  Get plastic out of you life.  It’s no good.

How to Clean Your Hair Brush

boar hair bristle brush, brushing my hair, brushing or combingAfter a few months of using my brush I noticed that is was getting grey, dirty, clogged with hair and sad looking.

Cleaning your hair brush is more obvious that you realise.

Your hairbrush is made of hair.  So clean it like you clean your hair.  I wash my brush more regularly now than I used to, trying to keep it as clean as it new.

Wash your hair brush in the same way you wash your hair, with warm water and shampoo and conditioner.  I have a little bottle of shampoo that I just use to clean my hair brush, as I find the Olive oil soap hard to lather in the bristles, but that’s just me.

Don’t let boys Touch Your Brush

Don’t let other people brush their hair with your hair brush – Like tooth brushes. Your scalp produces oil and sebum that is right for your hair, not anyone else so try to keep hair brushes in the house separate for each person.

 

ITP Awareness Day

ITP Awareness Day Is Getting Big!

What started in America, has actually spread around the world.  Wether it is a recognised day or not, it does not seem to stop us from celebrating ITP Awareness day around the world.  Here in Australia, I had an appointment with my Haematologist on September 28th and the first thing she said was “Happy ITP Day!”  Here in Australia we have been making ITP Awareness Day cup cakes and decorating the house!

ITP Awareness Day – 28th of September! 

itp Awareness day, september 28, itp, blood disorder
purchase here

Support the growing awareness of ITP in communities by wearing a PDSA ‘Got Platelets’ bracelet on September 28th, 2012.  These bracelets are a being sold by the Platelet Disorder Support Association for just $ 3 each.  Show your friends and family that you are there to support them.  There is a lot of miss understanding around itp, and a lot of the unknown.  Wearing a bracelet on September 28th might spark a conversation, and one more person will become aware of itp.

Awareness Day

Screen shot 2014-03-14 at 3.25.28 PM

ITP is a growing but little understood health problem that most people (including some medical professionals) have never heard of. It affects individuals of all ages, sexes, and ethnic origins and ten times as many people as hemophilia.

 



Fortunately, substantial progress in understanding the mechanisms of ITP has been made in recent years. New treatments are now available. As research continues, however, the challenge continues to educate healthcare professionals and the public about this disorder. ITP patients and caregivers often feel they know more about the disease than their healthcare providers. As a result, there has become an increasing need for ITP Centers of Excellence to study, treat, and accurately record data to further understand the disease. Similar centers have proven highly successful for studying, recording, and treating other bleeding disorders like hemophilia and sickle cell disease.

 

Screen shot 2014-03-14 at 3.28.31 PMWhile there is no cure for ITP, more is known about the disease each year and new treatments become available. But there are still so many unanswered questions.

 

Join PDSA this September as we come together to make ITP as well-known as cancer and heart disease. There’s never been a more important time to power up, get pumped, get in the game, and sport purple for platelets!!

#itpawareness on INSTAGRAM

Sorry:

- Instagram feed not found.

Blood tests don’t have to be so Testing

Blood tests, itp, blood counts

Feature image from ITPANDME

In Bali, there is a daily practice of giving offerings to both good and bad spirits alike.  There is no discrimination when the Balinese bless their homes.  They anticipate ill fortune as eagerly as they hope for the good.

itp, blood tests, blood countsEvery morning that my partner and I lived in Bali, a Balinese boy would come to the front of our house, light incense at our door and leave gifts of fruit and flowers for the kind and evil spirits.  Sometimes he left a lolly, or an egg, other times a wedge of watermelon.  Always, he left flowers, incense and a prayer.

The Balinese  are resilient, patient and happy.  They see the good in everything, and know how to take the evil spirits out to dinner and win them over with treats and candy.

I learnt a lot from this practice.  Before I lived in Bali, I would dread going to the doctor.  Before I lived in Bali I resented being ill.  Since my time in Bali I have taken a different approach to my illness.

In the past, I would anxiously head to pathology too early.  During the appointment, my palms would sweat with anticipation of the needle.  I had started to attach so much emotion and anxiety onto the act of having a blood test that it would ruin my whole day.  Afterwards, feeling sore and sorry for myself, I would grumble all the way home, poor me… blah blah blah – my life sucks, needles are painful and intrusive and they make me sad.  Blah blah blah…  My arm hurts, my count will probably be really low and I’ll have to have another one soon.  Why do I have ITP and no one else does?

Now, I have a ritual on the days when I get a blood test.  It is like a date I take myself on.  I always buy myself a coffee and allow enough time to walk all the way to the doctors office.

I strut along listening to great music and I smile as much as I can, drinking coffee and feeling free.  I take whatever I am reading (Tolstoy at the moment) and relax in the waiting room, remembering that there are not many people who are able to sit for 10, or 15 mins today reading a good book without feeling guilty.

I am kind towards my ITP.  I give it treats sometimes and I take it out on a little date after we get a blood test even though it came to me in the guise of an evil spirit.  I have realised that it is not going to go away, so I have decided to invite it in for dinner.

I make time so that there is no rush.  As the needle goes through my skin, I remind myself how lucky I am to have access to clean, safe and affordable health care.  On the way out  I buy a small paper cup of hot chips before I walk home.  My body is so accustomed to this treat and that I get a bit excited when I remember what day it is.

I remind myself that I have a condition that is being researched and studied.  That it is treatable and manageable and that on it’s own, it is rarely fatal.  I smile and get on with my day.