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.

 

Most popular ITP Books, Blogs and Articles for 2016

Feature image from HERE – (image of Home page on my computer – on desktop)

Top 5 most popular articles of 2016 from ITP and Me.  

  1. THE QUESTIONS YOUR FRIENDS ARE TOO SCARED TO ASK
  2. THE SEVEN STAGES OF ITP
  3. LIFE EXPECTANCY
  4. YOUR STORIES
  5. PREGNANCY and ITP
  6. A BEGINNERS GUIDE to ITP

Continue reading

Merry Christmas Everyone

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Feature Image from ITPANDME

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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Feature image from DECLIEU

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

I’ve Done Something Bad…

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I’ve done something really bad.

But it is done, so I may as well tell you what I did.

It all started two weeks ago when I dropped my son off at daycare. I left him in the capable arms of a kind woman.This kind woman cares for my son every Wednesday, and every Wednesday when I go to pick him up, I’m reassured he had the happiest, most wonderful day ever.

But two weeks ago, when I picked him up from daycare, my son was sick.

In what could only be described as a Poonami (Thank you Mander!) I spent the next week cleaning sheets, changing nappies, wiping up vomit and holding him close as he struggled with a tummy bug. He was sad, a little clingy and lost weight.

What I didn’t do, however, was take any of my medication.

A whole week. I just forgot.

I’ve been taking it every day for more than 8 years, and then suddenly I forgot. My body is addicted to it. My doctors are petrified about what would happen if I were to stop suddenly.

And then I did.

When I realized what I’d done I rushed to my medication and grabbed a glass of water, ready to take the tablet. Then something stopped me. What if I didn’t take it? What if I went just a little longer?

I had come this far, what was the harm in pushing it out a little longer?

I felt ok, I hadn’t had any terrible bruising. I wasn’t bleeding. I didn’t seem to be in adrenal failure. I was doing ok. I held the little tablet in my hand and wondered…

I knew my body needed a break from the medication, everyone agreed with that. But everyone was concerned about what would happen. It was too risky, my doctors told me. I also knew pregnancy and hormonal changes can have a huge effect on autoimmune disorders.

I decided I would wait another week. I needed a blood test and a plan. I went to the blood test centre (What are they called? Collection place?) to check my platelets.

In two weeks, without taking anything, my platelets have fallen from 52 to 41. Not bad really…

Tomorrow I have an appointment with my doctor to confess what I’ve done and have another platelet count. I’ll let you know how it goes.

What is ITP in Pregnancy?

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Feature image from SARAWICKAM

ITP is the abbreviation of the blood disorder Immune Thrombocytopenia. Immune Thrombocytopenia is defined as a low platelet count in an otherwise healthy individual.

If a pregnant woman develops a low platelet count during her pregnancy she will either be diagnosed with ITP or Gestational Thrombocytopenia.

If she has not previously had a low platelet count, she is more commonly diagnosed with Gestational Thrombocytopenia. If the pregnant woman has a history of low platelets it is classified as ITP in Pregnancy.

If the platelet count corrects itself after the pregnancy then she simply had Gestational Thrombocytopenia. If the low platelet count persists, she may be diagnosed with Immune Thrombocytopenia.

Pregnancy is known to lower the platelet count of almost all pregnant women in some way. The normal range of platelets in nonpregnant women is 150 to 400 making the average platelet count 250.  During pregnancy the average decreases to 213,000. Continue reading