I’ve Done Something Bad…

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Feature image SEANMUNDY

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.

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

Book Reviews, How To Heal A Bruise

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I’m so happy and proud to be celebrating HOW TO HEAL A BRUISE‘s 1st Birthday. It is one year of the book being out there in the world, and to celebrate I’ve been looking through reviews.

The book is AMAZING! It’s so easy to relate too. I read the titles of the chapters and was positive I hadn’t been through that phase, then after reading it in more detail, the realisation sank in that I had, I just hadn’t realised it.

It is honestly brilliant. Thank you for writing it! I think it will be a massive help to all ITP suffers and their family and friends.

Meghan’s book is filled with all kinds of important information on Immune Thrombocytopenia, even a detailed history of how it was discovered. I highly recommend this book for anyone who has ITP or knows someone with this blood disorder. It will change the way you look at the disease and empower you to take a more proactive approach with your health.

“How to Heal a bruise” is a must read for anyone diagnosed with ITP. It should be prescribed by the doctors and as early as possible to avoid feeling terribly alone, disillusioned and helpless

Continue reading

Increase your Platelet count during pregnancy

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Feature image from VERYWELL

Having a lower platelet count during pregnancy is nothing to worry about, it kind of happens to everyone.

It is natural for a woman’s platelet count to drop during pregnancy.  Gestational thrombocytopenia usually develops in the third trimester and is not known to have any harmful effects on your baby. In fact, once you deliver, your platelets will get back to their normal count.

  • Although experts do not have the exact reason, but low platelet count is said to be a side effect of pregnancy.
  • If you have found out in your reports that your blood platelet count is low, you will need to make a report of this and inform your gynecologist.

Wheatgrass

In fact, it can produce significant increases in hemoglobin, red blood cell, total white blood cell and differential white blood cell counts. This happens because wheatgrass is high in chlorophyll with a molecular structure almost identical to the hemoglobin molecule in human blood.

Simply drink ½ cup of wheatgrass juice mixed with a little lemon juice daily.  TEN HOME REMEDIES

Spinach 

Spinach is a good source of vitamin K which is often used to help treat low platelet disorder. Vitamin K is required for proper blood clotting. Thus, it reduces the risk of excessive bleeding.

Vitamin C

To increase your platelet count, you need to increase your intake of vitamin C, also known as ascorbic acid. A study published in 1990 in the Japanese Journal of Hematology stated that vitamin C improves platelet count.

Being a powerful antioxidant, high doses of vitamin C also prevent free-radical mediated damage of the platelets. Your body requires 400 to 2,000 mg of vitamin C per day, depending on your age and overall health.

Zinc

Zinc is a mineral that all pregnant women should supplement with. Zinc deficiencies have been linked to fetal abnormalities and birth deformities. Zinc deficiencies have also been linked with low platelet counts, and zinc supplementation causes a dramatic rise in platelet aggregation. Reference the zinc article for information about the quality considerations of different zinc supplements.

Exercise

Healthiness – Lots and lots of healthiness.

 

Sue

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‘Sue’s Story’

A little bit about you – I am 53 years old and have lived in Melbourne, Australia all my life. I work in the accounts department of a Law firm and have done so for the past ten years.  My passions in life are photography, gardening, travel and writing poetry and I have been doing a lot of the latter since being diagnosed with ITP.  I have been married to Andrew for 27 years and we have a 23 year old daughter named Elysa.  When I was 8 years old I fell off a slide and had my spleen removed.

How were you diagnosed –

On the morning of the 2nd of February this year I awoke feeling unwell and when I got out of the shower I noticed a strange, large oval shaped bruise on my right forearm.  I had never seen anything like this before.  It was raised and very tender to touch.  I also discovered a large black blister on the side of my tongue which was very confronting as I’d never seen anything like this before either.  Over the past week or so I had also noticed tiny pin pricks of blood beneath my eyebrows and a few on my cheeks but didn’t really give them a second thought.  My mind started racing and I immediately thought it was something to do with my immune system and the fact that I didn’t have a spleen.  I didn’t know whether to wake my husband or what to do but felt an urgent need to get to the doctor so made a morning appointment.  I told my doctor about the turn of events that morning and said I’d been feeling tired over Christmas but put it down to the hot weather and being such a busy time of year.  Also, last year had been extremely stressful as my mother was battling anxiety and depression and was about to move into a retirement home, as well as selling the family home.

My doctor looked at the bruise on my arm and the blister on my tongue and said she thought it might be something to do with my platelets and ordered me to get some urgent blood tests.  I went back to work and at 2:20 pm received a phone call that terrified me.  It was my doctor ringing me and telling me to get to the Alfred Hospital immediately as my platelet count was down to 5,000.  I handed the phone to my workmate as I was not comprehending all the doctor was saying and before I knew it my husband was driving me to the Alfred.  Before too long I was admitted and monitored until I saw a doctor who told me they were in the process of sourcing some special blood (yellow) in order to give me an IVIg transfusion.  In the meantime they explained that they would give me some steroid tablets.  At 8:00 pm I was given my first dose of Prednisolone (80mgs) and at 11:00 pm they started the IVIg transfusion which finished at about 7:30 am so needless to say I hardly slept that night.

I was told the next day my condition was called ITP and I spent the next three days in hospital and since the week after I have been having regular blood tests and visits to the Haematologist at the Alfred.  My last platelet count on 7th March was at 488,000 which was a huge improvement.  I have slowly been weaned off the Prednisolone over the past weeks and on Wednesday 30th March I stopped taking it altogether.

Well, the side effects were horrendous with the worst initially being insomnia, fatigue, feeling hyper then depressed very quickly, twitching in my muscles, weakness in my legs etc.  Other symptoms would come and go but in the past week the depression is much worse, as is the weakness in my legs and the fatigue.  The feeling of being hyper, I have not felt for a couple of weeks now, I guess due to the reduction in the medication.  Strangely I’ve been feeling worse since being on a lower dose.  I am feeling very apprehensive about what side effects I might have now I am completely off the medication but try not to think about it.  I go back to the hospital for an update on condition on Monday 4th April and see where I go from there.

How were you feeling before you was diagnosed?

My illness took me by surprise, although when I look back it could have a lot to do with my concern and worry for my mother.  I hadn’t been sick other than feeling very tired over the Christmas period but put this down to the hot weather and being such a busy time of year.  I also had a sore on my leg that just wasn’t healing but it turned out that was nothing to do with my illness. 

When your platelets drop…

I’m a bit concerned about a relapse and wonder whether I’ll have some idea beforehand that something is wrong next time?

Stress is…

After my diagnosis my Osteopath suggested that the cause may have been due to stress re my Mum and I tend to agree with him.  To combat stress in my life I get out in my garden or down to the beach and take sunset photos.

Heat – As I currently at the menopause stage I find it difficult to know whether my hot flushes are from menopause or ITP.  Before my diagnosis I would suffer hot flushes at random during the day but mostly at night while asleep.

Sleep – Up until my diagnosis I was a pretty good sleeper but in the first few weeks I was averaging about 3 – 4 hours sleep and I was up at around 4:30 – 5:00 am as I couldn’t sleep and this lack of sleep eventually caught up with me.  As I lowered my dose of Prednisolone my sleeping has improved although I wake up at least 2 – 3 times a night but manage to go back to sleep.  I have always been a morning person and generally wake up around 6 am every morning and am usually in bed by 10 pm reading for ½ an hour or so before turning off the light.  I generally cope okay with 6 – 7 hours sleep.

Exercise – I generally do pilates once a week for an hour and my husband and I do ½ an hour with a personal trainer every Saturday morning but since being diagnosed I feel so exhausted every day that I have no interest in exercise.  I just don’t think I’d be able to do it as my energy levels are so low, particularly by the end of the day.

Appetite – My appetite is still okay but in the past week I have felt nauseous some days so don’t feel so hungry. 

Moods – I seem to get upset very easily and when I was on the higher dose I’d get angry which was very unlike me.  As the depression got worse I cry very easily and feel very flat at some stage on most days.  Sometimes I feel down the whole day and just can’t seem to lift myself out of it.  I manage to hide how I really feel from others.

How has my life changed since my diagnosis? – My main fear is what does my diagnosis mean re my life expectancy.  It terrifies me but I can’t stop thinking about it.  I want to continue to pursue my love of travel and we have a sponsor child in Bali who we will visit next year.  I just made an appointment with my GP to ask her some questions re my concerns but she may not have the answers I seek?

Worst / funniest injury – I’ve had a very colorful life re injuries/operations etc.  In 1971 I had my spleen removed, I’ve had two shoulder operations in the space of two years (on different shoulders) and I suffered a spontaneous pneumothorax (collapsed lung) which I only recently discovered was due to a Myotherapist putting the needle (re dry needling procedure) in the wrong place, hence  causing the lung to collapse.  Now I have ITP to add to my impressive list – never a dull moment with me!!

Dealing with ‘being sick’ – At the moment there are still many unanswered questions re my illness and up until I discovered ITPandMe I struggled to find much information at all about ITP, as I’m sure many of you can relate.  It surprised me that the people who have cared the most are those I hardly know.  Some people still have not contacted me to see how I’m going and that has disappointed me greatly.

I also write poetry when I am extremely emotional about something.  This is one I wrote about my recent illness :

OKAY ON THE OUTSIDE

I hide behind a mask

Of fear and uncertainty

As my illness takes control

It’s almost got the best of me

I make out that I’m okay

But you probably wouldn’t know

If you scratch beneath the surface

You’ll see I’ve lost my golden glow

I look okay on the outside

But there is much you cannot see

The medication is horrendous

And I’m not the same old me

There are visits to the hospital

And blood tests every week

My life has changed so much

But it’s normality I seek

My body feels so weak

Even though my mind stays strong

I wish I had a crystal ball

I just wish I knew how long?

Sue Tancheff

18th February 2016

Regina

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Welcome to Regina's Story

We like to ask all sorts of questions here, from the diagnosis story, to how patients with ITP sleep.  How they deal with stress and how they feel when their platelets are falling, appetite, mood and how their life has changed since ITP – Funniest or worst injury and how they manage ‘being sick’…  Every ITP story is different.  Enjoy.

A little bit about me

I live in Pennsylvania and have always enjoyed an active lifestyle. I also enjoy reading, playing piano, singing, horseback riding, and animals of any kind. ☺ I was born in January 2002.

How I was diagnosed and my journey so far…

When I was about 6 or 7 years old I started getting big bruises all over my body for absolutely no reason at all. My mom then took me to the doctor and he did some bloodwork. We got the results back late that night and my count was at 8,000.

The doctor thought I might have leukemia and told us to go up to Hershey right away. When we got there they did a lot of testing and early the next morning they informed us that I had ITP. They gave me IVIG which made my platelet counts go up to about 100,000 but they went back down a few days later and the treatment made me very sick /nauseous /headache /exhausted. This was during my first year of school.

After that they pretty much watched and waited. I had weekly blood tests taken, and went up to Hershey Medical every few weeks or so. After about 4 months of this, my platelet counts started slowly rising… but they never went back up to a normal count (150,000-400,000). They rose up to a stable area though of 60,000 to 70,000 and stayed there for about 7 years. During this time that my platelet counts were stable I lived a totally normal life and was able to be active again. Continue reading