A Healthy Change for the New Year

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It is almost time for the new year.  This is the time when my life is filled with two things, New Years Eve plans and New Years Resolutions.  While New Years Eve parties are a grand farewell to the year past, it is our New Years Resolutions that keep up looking forward with fresh eyes and renewed promise.  Making resolutions is one thing, keeping them is something else entirely.  So how can we make sure we keep our New Years Resolutions for 2016 and what is the best way to make them?

For me, New Years Eve parties have always felt like a happy but final sendoff to the year gone by.  They are a finish to everything that has come in the previous year, whether it be positive or challenging (or if you had a nasty year, a really great wake).  New Years Eve has always felt like a goodbye.

New Years Resolutions have always felt like a hello.  To me, they are a way of welcoming the new year and of planning ahead to ensure my future will be a little brighter.

1. Begin by looking back over the past year.  Making resolutions of all the thing I want to change can often leave me feeling like a bit of a failure.  The act of sitting down and writing all the things I should do better, haven’t done or aren’t very good at, can be pretty demoralising – so instead I begin my resolutions by looking back on everything I have already achieved.

I divide my year up into different categories – for example, Family, Work, Health, Adventures, Love, Me, Education… (whatever you like).  Then write down every great thing that happened in those categories.  This makes New Years Resolutions more of a process of filling in the gaps.  Now take a look at the year that has past.  Which categories did you ignore?  Where could you focus more attention?

2. See how far you have come.  It is important to see how far you have come in just one year.  This process will put you in a positive mind to write your new years’ resolutions.  It will help you to see just how much is possible in a year and what you are already able to achieve.

3. Plan your next year.  Now you are ready to write your resolutions for 2016.  This is a great time to simply plan your year, look at what is ahead and start to get prepared and excited.  Make sure you are writing a positive plan for the year to come, with plenty of rewards, adventures and joy.

What does this have to do with ITP?  Have you considered your autoimmune disorder in your New Years Resolutions?  This year I am making a special mention of ITP as I sit down to plan 2016.  These are the questions I am asking myself…

  • What have I been wanting to try, but keep putting off?
  • Which treatments have I attempted but never really committed to?
  • What treatments have you been sceptical about?  And how can I be more open minded?
  • How am I going to approach my ITP this year?

 

2016 is a long time, and there are plenty of months to try, stumble and try again before you sit down to plan 2017.  Is this the year you try meditation?  Is 2016 the year you commit to returning to exercise?  Is this the year you slowly begin to overhaul your diet?

What are your New Years Resolutions for 2016?  Sharing your resolutions can help you commit to them and motivate you to see them through.

Add them to the comments below.

 

ITP, The Questions Your Friends are Too Scared to Ask?

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Feature image from WEHEARIT (Apologies for the terrible spelling)

I know the feeling.  A good friend is sick and I want to be there for them.  I’m interested in their problems but their condition doesn’t quite make sense to me.  I’m not sure how to ask the right questions without offending them.  So instead I don’t ask.  I pretend I understand, nod my head and try to say positive things.  But all the while I’m thinking, it doesn’t sound too bad.  

Well, my friends were brave enough to ask the questions your friend might be holding back.  Here is one of our most honest conversations about ITP and how it affects patient lives.  It is also a wonderful insight into how others perceive ITP.  The answers to 12 questions your friends might be too scared to ask.

Q. Is ITP the same thing or similar to the disease that the heir to the Russian throne who was killed by the Bolsheviks, Alexei Nikolaevich, had? I think he had haemophilia? 

A. ITP is kind of similar to haemophilia, but at the same time very different.  While haemophilia is a hereditary disease, ITP is an autoimmune disorder.  Haemophilia is quite rare and will most likely affect men as it is associated with the Y chromosome. ITP is more prevalent in women. 

More people have ITP and it is overall more responsive to treatments, making ITP an easier disorder to live with day to day – but still just as dangerous in emergencies and accidents.  

Q. I understand that ITP has something to do with bruising. Bruising doesn’t seem that bad. I bruise every time I bang my shin against the coffee table. What’s the big deal? Continue reading

The First Trimester of an ITP Pregnancy

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We are having an ITP baby!  I am currently 15 weeks.

The first trimester was pretty full on and things are only now starting to feel normal again.  It has been an insanely busy, stressful and at the same time slow 3 months.  We have already seen the baby three times on the ultrasounds.

I am still nervous just writing it down.  Everytime we go into the doctors, there is a little hesitation, doctors always cautioned us about the risks, to not get too carried away.  They smile, but they are always clear that this will be a long pregnancy and to not burn up all our energy in the first few weeks.  We will need a long game with this one.

Here’s a run down on what our first trimester with an ITP pregnancy looked like.

APS pregnancy, Hughes Syndrome Pregnancy, ITP Pregnancy, gestational thrombocytopenia, immune thrombocytopenia during pregnancy, breastfeeding with ITP, birth with ITP, ITP birth plan, low platelet pregnancyDoctors – We went to the doctor as soon as we found out we might be pregnant, which was 3 weeks.  It was as early as possible.  Our doctor was surprised the home pregnancy test even came back positive. 

Home pregnancy tests are getting more and more accurate, but they are not all the same.  On the back of the test, you can read how accurate they are.  Some of the tests are able to give you a positive three weeks earlier than others.  Don’t believe anyone who tells you they are all the same.   Continue reading

ITP on Capitol Hill, by Rare Candace

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People with itp, famous people with itp, living with itp, celebrities with itp. A Guest Post by CANDACE

from RARECANDACE

This past February, I had the opportunity to advocate on behalf of ITP patients during Rare Disease Week. I traveled to Washington DC to learn about the 21st Century Cures Initiative, now House Bill 6. The legislation provides a lot of groundbreaking developments for the rare disease community, especially for those of us with Immune Thrombocytopenia. I’m a firm believer that certain things in our lives occur to inspire us to embark on great journeys. This trip was my wakeup call. I learned about a bill that would eventually be included into 21st Century Cures.

It was called the OPEN Act or Orphan Product Extensions Now Accelerating Cures and Treatments. The goal of the bill was to allow FDA-approved drugs to be repurposed for rare disease patients. This struck me, since I used Rituxan to control ITP. It worked and I have been in remission since December. Using Rituxan has saved my life and allowed me to build my “new normal” as a rare disease patient.

The OPEN Act would end “off-label” use of Rituxan for ITP patients in the US and allow more people to have access to the drug. I have met many ITP patients who were denied Rituxan by their insurance company because it was off-label and thus very, very expensive. I met with the Congressman Bilirakis who is from my home state of Florida. He introduced the OPEN Act in the Energy and Commerce Subcommittee and is a wonderful friend of the ITP community.

I told him I was living proof his bill could save and improve the lives of ITP and rare disease patients. The Congressman and his amazing staff have used my experience to push Congress to include the OPEN Act into 21st Century Cures, and were successful. None of this would have been possible without their help.

After the July 4th holiday, it is anticipated that the House of Representatives will vote on the 21st Century Cures bill. We believe it will pass with tremendous support from both parties. Our next challenge is encouraging the Senate to act with the same urgency. Time is running out and ITP patients need to have access to every treatment option available. Orrin Hatch and Amy Klobuchar furthering bi-partisan support of our efforts introduced the OPEN Act in the Senate at the end of May.

I am in contact with legislatives aides that are working diligently to get the Senate on a fast track. There is a lot of work that goes on behind the scenes and the Congressional staffers don’t receive a lot of credit. So far, I have had nothing but positive experiences working and advocating with them. They are interested in seeing that the ITP community benefits from this legislation.

Many ITP patients in other nations are probably shocked by this, and rightfully so. It is unfathomable to think that the United States would prevent rare disease patients with a life threatening blood disorder from obtaining a medication that may put their disease into a temporary remission. While Rituxan doesn’t work for all ITP patients, and doctors don’t know everything about the disease, every ITP patient has the right to try.

This is why I fight for the ITP community, I believe every ITP patient and rare disease warrior deserves the same chance I had. I also hope to have this legislation on President Obama’s desk before I need to use Rituxan again. My safe zone of 9 months is rapidly approaching, right around the time I begin law school. I am terrified to think of what will happen to me if my platelets start to fall again and I cannot have the same treatment. That’s why there is no time to waste in pushing our leaders to get this bill passed.

An Interview with Miss Plaquetas (Miss Platelets)

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Laura Cisneros is an ITP patient living with Fybromyalgia and Chronic Fatigue Syndrome in Mexico City.  Online she blogs as Miss Plaquetas, writing a bilingual blog about chronic illness and cooking delicious food.  I first saw Miss Plaquetas on Instagram when she was sharing images of bruises under the hashtag #platelets.  Lately we have been chatting.

I’ve lived with ITP for the past three years now.  March the 1st of 2012 I had a fall that wasn’t even tough, but that caused a huge black bruise on my leg.

It was her friends, family and bosses at work that noticed Laura’s symptoms.  Her family were concerned; especially as she looked very worn and felt she was under a lot of stress.

By then I already had symptoms of the disease, although I didn’t know it was ITP.  I ignored these signals which I believed were caused by the stress to which I was subjected.  I traveled a lot for my job and was addicted to my work.

At the time Laura was working in Industrial Engineering specialising in Hygiene and Industrial Safety which saw her constantly traveling.

I always put my job as my priority and on weekends I was partying a lot, so it was natural for me to assume that my body was already getting tired. Sometimes I would get a message the night before that I had to go on a trip,and I should be ready for at least, fifteen days of absence.  I never thought it was something else.

Laura was eventually sent to the ER with a count of 12, not understanding what was happening and not sure how to explain anything to her parents.

Three years may not sound very long, but I’ve been subjected to a myriad of treatment with immunosuppressants, steroids, alkali, intravenous, oral, mixtures…Two splenectomies, one of the spleen and one in accessory spleen and tumours.

Laura’s longest stay in hospital so far has been two months.  Her doctors have tried all possible treatments and none have worked successfully.  The journey has taking quite a toll; mentally, personally and spiritually.  There have been exhausting times when Laura even considered simply giving up.

Due to constant fatigue, eventually I got more diagnosis of fibromyalgia and CFS, which coincided with my chronic ITP diagnosis in November 2014.  It took two years that a rheumatologist diagnosed me with fibromyalgia and CFS.

Continue reading

The Questions I get Asked the Most.

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1. I am so confused!  Can you Help me?

I hope so, but not always.  Almost every email I receive begins with this sentence or something very similar to it.  I am not a doctor and I have not ‘cured’ my own ITP by drinking kombucha tea.  Chances are I probably can’t ‘help’ you in any physical sense.

But I would love to make you feel better and help to ease your mind about ITP.  My aim is to promote a more positive frame of mind, remove a lot of the fear and misunderstanding from ITP, help you to take practical steps to regain control of your life and hopefully make you laugh.

2. Can I still exercise and go to the gym?

The best way to answer this is to again speak from my own experience.  I exercise a lot.  I don’t go to the gym because I prefer to walk and dance.  If I was a gym person I would defiantly still go.  I prefer to walk, ride my bike around town and go to dance classes.  I do about 6 hours of ballet a week (I know what you’re thinking, she’s probably pretty good! But sadly no, I am still terrible).

But let me be clear.  This exercise is hard.  It hurts and I can feel it the next day.  I am sore and my muscles always ache.  It is not easy for me, but I try not to be discouraged or scared by how differently my body responds to exercise.  If I have a very bad run of low platelets and terrible side effects, I return to dancing via a few weeks of yoga first.

3. How long will it last?

There is no way to know how long your ITP will hang around for.  Generally vaccine induced ITP is acute and will be in remission after six months.  Other than that, there is no way to really know.

4. Will I give ITP to my kids?

In short, no.  While there is no scientific evidence that parents with ITP will have children with ITP, it has HAPPENED BEFORE.  There is a fine line between nature and nurture.  Babies born to ITP mothers may have a low platelet count shortly after their birth.  This is because they are still processing and recovering from antibodies in their mothers’ blood.

5. Have you ever had Rituxumab?

No. I personally have not had Rituximab.  I do have a number of friends that have taken it and have seen my mother go through two courses of the drug.  If you are looking for more information on Rituximab, I recommend you read THIS article.

6. Which treatments have you had?

I consider myself very lucky with the treatments I have had for ITP.  I have a prednisone responsive immune system and am able to mostly treat my ITP through steroids (though they have their own problems, I know).

7. Which Diet / Nutritional Philosophy do you follow?

I eat a very relaxed combination of the PALEO diet and the EAT RIGHT FOR YOUR TYPE diet.  My blood type is O.  Type O people are recommended to have a protein heavy diet, which is what I naturally crave.  So when I tell people that paleo really works for me, I need to be clear that it also fits well with my blood type.

When I say I am relaxed about what I eat, I mean that I don’t let my diet interfere with social occasions or refuse loving home made food.  I eat whole foods made from scratch.  My indulgence is cold press pear cidar and shoe string fries.