How to Break Up With Your Doctor

doctors, ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp, blood disorder, ITP and me

Doctors are wonderful.

Not everyone will agree with me on this, but that’s ok, not everyone has the same doctors as me.  And even more interestingly, not every knows they don’t have to just take the first doctor / haematologist / rheumatologist / immunologist that comes their way.

My doctors are often more caring, interested and non judgemental about my medical status than some of my friends.  My doctors are happy for me to email them sometime and I have their mobile numbers in my phone. My doctors give me less shit about drinking wine than some of my family does, Bennett?

My doctors have been there, even long distance, for all my freak outs but not all doctors are great.  Why do I have such great doctors?  It’s not luck.  I found them.  I actively went about finding the best doctors available, making sure they were the right ones for me.  In doing so, I had to break up with my old ones.

You don’t always have to take the first doctor that see’s you.   Don’t be fooled into believing how lucky you are to even be seen a doctor, especially in the very first stages of your illness.  It can be a seductive time, where you fall into the arms of the first person to help you, as you look for answers from whoever is closest to you at the time.  During the fear and confusion of being diagnosed with ITP, it can be such an utter relief to find a professional willing and able to help you through the chaos.  Accept this help, that is fine.  But like any long term relationship, ten years later the honey moon period may be over and you might start thinking – I don’t really like you, actually. Continue reading

10 Most Popular ITP Articles

ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp, blood disorder, ITP Blogs
I can’t believe it!

It has almost been two years of ITP and Me!  It feels like everything has happened so quickly.

Since I started to write about ITP, I have seen so many great contributors join our online community.  In the time I have been writing online, I have watched on in amazement as people with ITP from all around the world, have connected with each other on the internet.  Our stories are moving out of medical journals and appearing as honest accounts by real patients, in real time.  We have become out own best resource.

I would like to take a moment to thank everyone for their support, contributions and questions over the last two years.  To celebrate our two year anniversary, I’m taking a look back over the last two years and checking out which ITP articles were your favourites.

Here are the most read / shared / engaged with posts…

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People Living with Blood Disorders?

Sickle Cell, ITP, Haemophilia, Von Williebrand, people living with blood disorders

This was one of the hardest articles I have tried to write as the information pertaining to the number of people living with Blood Disorders is so difficult to quantify.  There are so many different types of Blood Disorders and even more people living with a disorder without even knowing they have.

Many people are living with a moderate or mild version of a Blood Disorder meaning they do not require regular medical support and intervention – Meaning they may not be included in the statistics collected from research and surveys. Continue reading

Breastfeeding While Taking Immune Suppresants

Prednisone, Side Effects Prednisone, ITP and Prednisone, breastfeeding with ITP - Itp and pregnancy, pregnancy complications, pregnancy information

Are you pregnant or trying to get pregnant while taking the immune suppressant steroid Prednisone? There is so much you need to be thinking about right now, wondering if you will able to breastfeed after the baby is born is just another consideration that needs to be investigated.

Question -

Is it safe to breastfeed my baby while I am taking Prednisone?

1. The Quick Answer - Yes.

2. The Real Answer - There is a very big difference between a drug being ‘SAFE’ and and drug being ‘GOOD’ for you and your baby.  Just because a drug is classified as safe, should I still take it?  There is a very big difference between something being proven to be good for you and scientists not being able to prove it’s bad for you.

Just because it is ‘safe’ should I do it? - 

Though many drugs are quite safe for a mother to take while nursing her child there are several agents for which ‘safety’ during breast-feeding is not well-defined and may be a risk to the infant.  What is safe for one person may not be safe for another.  Prednisone, according to every medical doctor I have talked to, is safe to consume while pregnant and breast feeding.  There is evidence that a small amount of the drug can pass through the breast milk and into the blood stream of the feeding child, an amount small enough for doctors to consider the drug safe.  However, I found the contributions of quite relevant to this discussion.  ‘Even if only a small amount of the drug were to be excreted into the milk, the inherently toxic nature of these medications warrants caution with their use.’

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Elementary School goes Purple on Sept 26th

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

Article from North Myrtle Beach Times 

School goes Purple for the Day

On Friday, Sept. 26, Ocean Drive Elementary School students wore purple in an effort to raise awareness for ITP. They wore purple tops, bottoms, shoes, accessories, jewelry and hair bows. The more purple they sport the more awareness they raise for ITP…There is no known cause or cure for ITP. It’s a growing but little understood health problem. The disease has not generated the kind of publicity, educational efforts or support that other chronic or autoimmune diseases have. The PDSA (Platelet Disorder Support Association) has been working for over 10 years to support families and patients affected by this disorder. In recent years, they have made substantial progress through education, advocacy and research.

ITP Awareness day, sport purple for platelets, ITP raising awareness, itp fundraisingFor many ITP patients this disease is a roller coaster of emotions. ITP has a huge impact on the day to day physical and psychological aspect of their life.
There are only treatments for ITP, which are only temporary fixes to raise or maintain platelets. There is never a guarantee that they will work or the amount of time a treatment will last.

It appears that the school involved, Ocean Drive Elementary has a student that has been affected by ITP. Raising awareness is a positive way for him and his family to cope and raise hope for a cure.

Published on October 2 2014.  Author unknown.


The Most Stylish Paleo Eater in the World

DIETRY - Paleo, Autoimmune protocol, eating for itp, ITP diet, Bruise, itp, low platelet count,living with itp.

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.”

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