8 Weeks Without Medication; what happened?

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It’s been 8 weeks!

If you haven’t heard what I’ve been up to, catch up with the beginning of the story here ‘I’VE DONE SOMETHING BAD‘ first.

I have been taking prednisone every day* for the last 8 years. And for the last 8 weeks, I haven’t had any… Boom. Cold turkey.

Boom! Cold turkey! I just stopped!

I didn’t mean to stop, but once I realised I hadn’t had anything for a week, I decided to take it a little further. I felt excited. I felt excited to be able to try something new with my body, to see what happened. I was seduced by the hope of everything being ok. I felt like something exciting is about to happen.

I had a few bruises on my legs but I didn’t really think about them. I was a little scared but mostly I believed that this would secretly be the end. I believed that I would just suddenly stop taking my medication and nothing bad would happen and everyone would tell me I was a medical miracle and I would be interviewed for the next edition of SPONTANEOUS REMISSION.

Here is what really happened.

My platelets slowly fell. In the first few weeks, I was certain that I was going to be fine. My platelets slipped but only by a couple. I thought I might have magically cured myself. I had heard that pregnancy can reek havoc on your hormones and I thought ‘wow, maybe being pregnant actually rebooted my immune system, amazing.’

In the first few weeks, I was certain that I was going to be fine. My platelets slipped but only by a couple. I thought I might have magically cured myself. I had heard that pregnancy can reek havoc on your hormones and I thought ‘wow, maybe being pregnant actually rebooted my immune system, amazing.’

Then they crashed hard.

My platelets fell quickly, down below 20. My ankles started to ache, my hands were stiff and sore, my neck felt sore all the time, and I was bruising everywhere. I feel sad and lacked energy. I ate too much food because all I wanted to do was lay around and feel sorry for myself.

I was struggling to manage the physical symptoms of an ITP inflammation as well as the emotional disappointment of having failed to magically cure myself.

I became rundown. I was sad all the time. I was tired and moody and kept hurting myself. I was stressed and anxious as my adrenal glands were flipping out and withdrawing from the drug. I was a mess.

I am so sad to say that it did not work. I wanted it so badly, but it all ended in nothing.

I’m back on Prednisone. After a high dose initially and rest to get over bronchitis, I am back to taking a moderate amount.

I feel like I failed.

*barring the occasional hangover vomit and forgetful weekend.

 

Merry Christmas Everyone

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Merry Christmas everyone. It’s Holiday Season already!

I want to wish everyone with ITP a joyous, full filled, and delightful Christmas. I hope your friends and families are well and that you are healthy and happy enough to enjoy this Holiday time.

I want to send out a special thank you for all your support and positive energy. Thank you for reading, sharing, commenting, and contributing to this ever growing website.

I can’t believe 2016 is nearly over. Our year began under very intense circumstances, waiting in Sydney for our little high-risk bub to be born.

ITP and also Antiphospholipid Syndrome played an enormous part in my pregnancy and BIRTH. I spent many hours in the hospital, in and out of appointments, blood tests, and OB check ups.  Continue reading

How do you Talk about Your Illness?

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How do you talk about your illness? Which words do you use to talk about your illness? What is your tone when you speak about it? How do you stand while talking about your illness and what about your body language? How do you describe your illness to your doctor, friends or your family?

For me, there is nothing worse than someone who bangs on and on about their illness. It’s exhausting. Especially when there is nothing you can do to help them and it doesn’t seem to be going away.

There is only so much of this I can listen to before I want to back away and never ask them how they are ever again. It’s unnecessary to go on and on like this. It doesn’t help anything.

Everyone is fighting something. Everyone has something huge to deal with in their life.

As a chronically ill person, I choose to discuss my illness as little as possible. I don’t want it to leak into my life. I don’t want it to be all they see. I don’t want it to get me down.

The more I think about it, the more I can’t ignore the impact of my speech upon my attitude. How I talk about my illness directly impacts how I feel towards my illness.

So this is my New Years Resolution when I need to discuss my illness, I will speak positively about ITP for a whole year. Continue reading

Feeling Grateful

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Giving thanks, or to put it another way, being nice first.

For a long time, I never realized just how important Thankfulness (is that a word?) and Gratefulness (that has got to be a word) is to Happiness (definitely a word).

For a long time, my default was to be in a bad mood, and then wait until things cheered me up. If I knew I had to get a blood test in the afternoon, I would waste an entire morning feeling sorry for myself in preparation for the afternoon.

I would head to the doctor too early, then waste too much time sitting around for no reason. Afterward, 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 make me sad. Having ITP is shit… Blah blah blah…

There was no gain from being like this. I didn’t gain anything positive from acting like this. My blood count never changed on account of how much I worried about it, or grumbled about the doctor, or felt sad and sorry for myself. The tests never came less frequently the more I complained to my friends about how I was forced to waste my days off at the doctors.

It was so destructive to my happiness, worrying about the results and feeling anxious all morning. I was frustrated that I had to go to the doctor (again) and felt like I was wasting my life.

I was the one that was suffering, feeling flat and sad. And it was my own fault. I was doing nothing to help myself feel better. I was focusing on all the crap stuff.

Taking the time, every day to be grateful and thankful for the good things in your life instantly changes your mood. It makes you smile, it makes you think and it helps to put things into perspective. Just try and think of ten things right now that you can be thankful for today.

Here is my list.

  1. ITP being positive, tp, itp bruises, bruising easily, hide a bruise, Bruises, Bruise, itp, low platelet count,I am so grateful that Kate came to visit with cheese.
  2. I’m thankful for the cheap tray of mangos I bought a few days ago.
  3. I am thankful the weather is hot and nice.
  4. I am so luck to have a mothers group full of amazing, normal, positive and hilarious ladies…
  5. That the coffee shop at the end of my street is now open late.
  6. I am grateful that the dress I am wearing to a friend’s wedding will hide the bruises on the top of my knee.
  7. I’m so happy that my friend Susie has a beautiful new healthy baby boy!
  8. I’m grateful that my body responds to Prednisone.
  9. I feel so happy to have a doctor that cares about my health and is honest and kind with her advice.
  10. I am grateful to live in Australia and have access to a variety of treatment options.
  11. I am grateful that the bruise on my arm has only come up half the size I expected.

Ok, so that was 11! See how easy it is once you get on a roll…

This is nothing groundbreaking.  Gratitude has been always been seen as a way to get your mood back on track. This article is simply a reminder.  And I think we all need reminding every now and again.

It is easy to get carried away with the negative aspects of a Chronic illness.

This week, try and fight it – with a bit of love and thanks.

 

What Not to Say to Women with a High Risk Pregnancy

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“Just relax OR If it’s meant to be then it’s meant to be OR The baby will decide when it’s ready to come.”

Telling someone to relax, not only does not help them relax, but it also trivialises their stress and worry. Instead of simply dismissing the stress of a high-risk pregnancy by distracting your friend or telling her to get over it. Instead, ask her if she would like to talk about it, tell her you understand how stressful it must be, and that she is justified to worry.

Tell her that you hear her concerns and think they are valid… Then try and help her relax by actually doing something relaxing with her, not just telling her to relax and then leaving.

“Oh, Yes, I know, pregnancy is such a worry.  I remember when we were having our last baby and we couldn’t get in to see the natural therapy hypnobirthing class for three months!  It was so stressful!”

Um, not the same thing… Continue reading

Bellies, Babies and Bruises

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For Women Living With ITP,

ITP Pregnancy, gestational thrombocytopenia, immune thrombocytopenia during pregnancy, breastfeeding with ITP, birth with ITP, ITP birth plan, low platelet pregnancy A Book About ITP and Pregnancy

In 2009, Meg Brewster was given a copy of her family tree. Looking back through the generations, she wondered if the family tree would stop with her or would she be able to have a baby while living with ITP and APS?

Meg had heard the risks of bleeding, bruising and infertility involved in ITP and Pregnancy. But were they real? Had she only heard the horror stories. She wondered what it would actually be like to have a baby with ITP, and if it was going to be as complicated as everyone had led her to believe.

Seven years in the making, this is the story of an ITP pregnancy; Including research and interviews with other women about their ITP pregnancies.

BELLIES BABIES AND BRUISES was inspired by Meg’s personal journey with ITP and APS while pregnant. ITP is an autoimmune disorder that causes bleeding and clotting problems in its patients. APS is a clotting disorder that is commonly associated with ITP and low platelet counts.

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About the Author, Meg Brewster

meghan brewster, author, how to heal a bruise, itp blood disorderMeg was diagnosed with immune thrombocytopenia when she was 22 years old. She struggled to read dense medical journals and scholarly articles to learn more about her ITP. What was missing from the ITP conversation was information from other patients about what immune thrombocytopenia was really like to live with. 

In 2012, Meg set up ITPANDME. It’s now one of the largest ITP blogs in the world. Meg loves writing about ITP, hearing other women’s stories and helping women with ITP connect.

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Praise for How to Heal a Bruise

The book includes lots of ITP information such as, the science, history, tips and guides, alongside strong emotional support. It is now my own ITP Bible! I could not recommend it more highly! FULL REVIEW HERE from Katie Meloy

Beyond being a book documenting scientific and medical information, is the personal experience of Megan Brewster after seven years of living with this blood disorder…I couldn’t stop reading.  FULL REVIEW HERE from Laura

‘My partner and I absolutely love your blog and find many of your post’s to be just what we are looking for.’ Andy USA

‘Thank you for your thoughts…they’ve helped me with finding perspective in our reality.’ Jenny Australia

‘Love the way you write…you made me chuckle.’ Bron Australia

‘Thank you for writing this, it will surely help the newbies.’ Padma, India

Features

  • Stories of pregnancy from women with ITP.
  • Meg’s personal journey with ITP and Pregnancy
  • Information about natural and caesarean births.
  • Information for breastfeeding mothers with ITP.

Bellies Babies and Bruises: An ITP Book for Women and Babies