Big Article on ITP & Meditation

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

There are a number of wonderful stories online by people who have been able to bring themselves into spontaneous remission through natural therapy.

Success Stories

It has taken me a really long time to truly believe that I could do it myself.  A few years at least.  But the more I read about ITP, the more I keep coming back to it.  Take for instance the story of Sasha from the PDSA website.  Who after working so hard to naturally cure myself – still is unsure what influence she had.  Many people get better for a number of difference and unexplained reasons – Are all these spontaneous remissions just coincidence or are they from persistence and effort?

The PDSA Website have a wonderfully diverse and inclusive approach to treating ITP, including encouraging patients to practice guided imagery, positive thinking and positive attitudes, quoting that ’40% of responders to the non traditional treatments survey believed that meditation, imagery and positive thinking helped their platelet counts and bleeding symptoms.’  read more on the results of that Survey Here.

Joan Young is one of the few people who has written and published a book on her experience with ITP and her own remission.  Wish by Spirit she recounts her initial diagnosis of a platelet count of 6, her various treatments with steriods, Ivig and surgery… her own fears and her investigations with food allergies and links to her own exposure to pesticides.

 Research

The Brain Wave Research Institute has a few articles about autoimmune disorders through mindfulness and meditation.  The articles discuss that fact that the happier and better a patient feels the more positive the outcome of their autoimmune disorder treatments.  Stress can be treated with Meditation –    ‘Meditation activates the “fell-good” parts of the brain and suppresses activity in the “stress-hormone” parts of the brain.  Serotonin and oxytocin, two “feel-good” hormones, are released during the deep relaxation that meditators experience.  Article here.

 

My Secret ITP (Bad) Habits

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

After living with ITP for a long time, I have developed some great habits.  I am healthier and more physically aware of my mind and body than I have ever been in my life.  In many ways I have been through all those amazing changes people rant about online after they get diagnosed with an autoimmune disease.  

I exercise, I drink plenty of water, I de stress, I pretend to mediate, I go to yoga once a week and take care of my body.  After repetition, these changes have become habits.  That is what happens over time, actions become habits.

Most of my new habits are wonderful.  A few of them are not.  Nobody is perfect right.  Along the way, through repetition, I have also picked up a few bad habits.  This are my habits I need to confess.

1. I Miss my doctor’s appointments – Doctors appointments used to be a very big deal.   I remember when I was little, a doctors appointment was a reason to take a day off school.  Doctors appointments used to be rare and important.  What I have found is, the more doctor’s appointments you have, the more common and unimportant they become.  This is especially important if every time you go to see a doctor they same the same thing to you.  Sometimes I book them months in advance and by the time the appointment comes around – well I am actually busy.

2. … And sometimes I don’t cancel - I don’t do this on purpose.  I don’t want my doctors to hate me.  I just sometimes forget to cancel.  And other times it is impossible to cancel.  When I am calling certain clinic’s within the hospital it is impossible to get through.  I get sent round in circles for 30 mins and then I just hang up and go about my business. Continue reading

Are Vaccines Causing ITP?

Vaccines and ITP

They say that there is no know cause for ITP.  All the information points to a combination of genetic susceptibility, life style, stress, immune function and whatever…  The list goes on.  If you have ITP then you are probably sick of hearing all the reasons why some people get ITP and other people don’t.

While researching an article for ITP and Me, I came across a very interesting pie graph that I wanted to share with my readers.  I was looking for information on People Living with ITP for another article, and I had found heaps.  I pulled it from a publicly posted presentation from a medical conference in 2012.  It was a pie graph that depicted the prevalence of Secondary ITP in relation to Primary ITP.

Secondary ITP, Primary ITP, ITP facts, People with ITP

 

  • Primary ITP accounts for 80% of all cases of ITP.
  • SLE or Systemic Lupus erythematosus or Simply Lupus accounts for 5% of cases. 
  • APS or Antiphospholipid Syndrome or Hughes Syndrome or Sticky Blood accounts for 2% (ME!)
  • CVID or Common Variable Immunodeficiency accounts for 1 %
  • CLL or Chronic lymphocytic leukaemia accounts for 2 %
  • Evan’s or Evan’s Syndrome accounts for 2 %
  • ALPS of Autoimmune Lymphoproliferative Syndrome is responsible for 1 %
  • HIV or Human Immunodeficiency Virus accounts for 1 %
  • Hep C of Hepatitis C has about 2 % of ITP cases
  • H. Pylori or Helicobacter pylori is 1 %
  • Misc Systemic Infection which would be Miscellaneous Infections account for 2 % of ITP Cases

Then I found this …

Continue reading

How Often Should I Ask My Friend how She’s Doing?

Blood disease itp, itp platelet disease, itp autoimmune disease

My dearest friend has ITP.

I have written about ITP and Friendship before here.

Her platelets fluctuate as do her doses of medication, access to good and bad information, her levels of being tired and in turn her mood. Each day that she wakes up she has ITP, and it isn’t going away any time soon.

Meanwhile I go about my business, working, moving houses, seeing friends, working on different projects, all with my (for now) reasonably healthy body to take for granted. I wonder about my friend often. I wonder if she has been to the doctor lately.  I wonder what her blood count is, I wonder how much prednisone she is on, I wonder how much she wonders about it all. I see her posts pop up on her blog about living with ITP and it reminds me, sometimes shocks me, that she is still living with ITP. I say shocking because often when shit things happen in your life you buckle up, breathe in, and try your best to move through them and come out the other side. We have all done this – buckled up, heard the bad news, cried and let the event finally pass by. But this one isn’t going to go away.

Each day she continues to wake up with ITP.

So my wondering has led me to ponder a couple of questions.

How often should you ask your ITP suffering friend how they are doing, not wanting them to not feel alone and forgotten in it?

How much do you allow them to remember and how much do you help them forget?

Living with ITP, What is ITP, family and friends, ITP friends

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

Recovering from Exercise with ITP

ITP and Exercise, exercise with low platelet count, ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp

Is there a risk for people with ITP when they exercise?  Yes.  However these risks associated with exercising must be weight against the benefits of such exercise.  What is a bruise every now and again in comparison to you or your child’s health?

Always common sense must prevail.’Vigorous exercise may lead to more “huffing & puffing” resulting in more petechiae than usual on the face and neck, but unless one has severe ITP with regular bleeding – nosebleeds or internal haemorrhage would not be expected with exercises that improve cardiovascular performance or muscle strength.’  ITP SUPPORT UK This article from ITP Support Uk goes on to say that this risk increases when patients are involved in contact or more active sports such as football, netball or basketball.

Recovery – How do you recover ?

The worst thing about a really great workout, is that for three days afterwards you can’t do another really great work out.  Post exercise, your muscles are aching and you can feel stiff and sore.  These side effects of exercise are compounded with ITP, as platelets are involved in the recovery process. Platelets are so importance in the recovery process that some sports specialist and orthopedists are offering platelet rich plasma injections as treatment for sport recover and to heal problems such as tendonitis.  ‘Within platelets are also powerful growth factors, substances which stimulate tissue repair of muscles, tendons, ligaments, and bones.  PRP is a blood preparation that contains few red blood cells, but a highly concentrated amount of platelets,‘ from Hunterdon Orthopedic. So how can you ensure that you give yourself the best chance possible of maintaining a healthy exercise routine?  Here are a few tips to keep you fit, and able to exercise as much as you like.

Continue reading