Feature image from MAMAMIA
Welcome to Mizzie'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 Mizzie…
I’m an Australian citizen and currently employed in the defence force, I exercise on a daily basis and I spend my free time raising two beautiful kids with my beautiful wife.
How were you diagnosed…
It was August 8th 2014. My career was thriving. Everything I ever wanted was coming my way. I decided to take my family out to dinner 2 days prior to going out on a field exercise with the Army that lasted 5 days. We went to Sizzler’s and everything seemed normal apart from gastro going through the family.
I had a vegetarian dinner were I had some off tasting mushrooms and didn’t think much of it. I woke up the next day feeling as if I was hungover but carried on with normal business. Over the coming days, I started becoming constipated and having bad tummy pains. This stage was just a constant 3/10 pain. ( I compare to be hit by a car as I was when i was younger). Day 3 of the field exercise I became really constipated so I had milk to help with my bowels, within 10 minutes I was in the toilet, I had projectile diarrhea and 10/10 pains in my gut as if someone ripped a hole in my belly. I had this episode and later that night I went to bed and was in constant pain.
I had a extremely vivid dream that night that was along the lines of tough times to come and that my *angel* was watching over me, this was later when I later interpreted the meaning of my dream. I continued the field exercise until the very end with massive arm size bruises popping up on me for a semi unknown reason. ( As I drive armoured vehicles I assumed it was bruising from hard work on the vehicles).
A little information, when you’re out on a field exercise your immune system is constantly under pressure. Anyway, I got back on August 16th 2014, I had another really bad spurt of pains and bowel movements, at this time I had enough of this pain as it was consistent this whole time.
I went to the medical centre, they took some blood tests and I went on my way. Three hours later I got the phone call; I had no platelets. This is were the journey began.
I got called straight back to my doctor and collected the form and went to the emergency department of the hospital, Was humorous in a way as i was like Moses just walked straight past everyone. At this time i was pretty normal I had no idea what was happening. They conducted some blood tests which confirmed I had no platelets. I was informed of what was happening and then wheeled down to the oncology ward.
This started to concern me. I spent the next 6 days in hospital. I was put on PREDNISONE and let me tell you… one HELL of a drug. I was not informed of any potential SIDE EFFECTS I was later to encounter. I was on 70mg for 1 month and 2 weeks before starting the weening process. When I was discharged from hospital, the flags were green, I was at 90 platelets. I seemed happy and fine and had so much energy I could have re-designed the world. Things were going good till my 2nd week review after discharge….
I had some confrontation at work where I was made fun of and billeted which dampened my soul. It was in the morning prior to my check up. I was informing my boss I cannot do this exercise due to the risk of bleeding and he turned around with words to the affect and called me a shit person. I conducted the session very painfully and went to my follow up. At my follow up I had found out some pretty bad news.
I dropped back down to 37 platelets and had liver failure. They were about to admit me back into hospital but didn’t as I was put straight back on bed rest from the Army. I ended up battling this thing for a month before I was able to go back to work on restricted duties. Time passed and I started to level out. They jabbed me over 50 times for testing, had bone marrow, ct scans, ultra sounds and cancer checks. I was put on Endone and oxycotin for my stomach pains when later I had an endoscopy and colonoscopy. The conclusion of all these scans and tests was I had gotten salmonella and my body was not handling it well. I lost 11 kgs in 1 week.
When I was weening off all my medications I encountered the bad end of the side effects of all 3 medications making me so blue I couldn’t wish this experience on anyone. I have never felt suicidal before till one day and that was my lowest point, I realised and sorted that out quickly and got a councillor.
The biggest thing that got me was when I realised I could have died out bush if I bumped my head and no one would have known. At the three month mark I was diagnosed with ITP and on March 15th I was diagnosed with chronic ITP. I have stabilised at 90-110 platelet range.
Also to note December 2014 I had a nose surgery and I had a bleed that ended up resulting in Rhino packs in my nose and 500ml + blood lose. This is also an experience I wish on no one, morphine doesn’t kill the pain. I was a fighter not a quitter.
When your platelets drop…
I start to get tired as my body starts to drop its platelets. When I get sick I’m more tired than normal and I am consistently popping up with bruises and petache.
When you have the Flu…
At the time of writing this, I’m sick and I am feeling the other end, fatigued and tired.
I meditated, and I also listen to soothing music prior to going to bed to help wind down and take my mind else were, and I ALWAYS think tomorrow is a new day. The sooner I fall asleep (if it’s a bad day) the sooner I wake up to a new start the following day.
Born in the tropics, heat is my normal thing so I don’t realise, and I’m immune to cold.
I’m a heavy sleeper. When I was on prednisone I was a jumping jack. It felt like I had been injected with straight caffeine. It was hard to sleep.
Calisthenic workouts, light weights high reps.
All healthy food, no alcohol (even before diagnosis ) and limited sugar.
The only problem I found with moods is learning to deal with a diagnosis’s and the potential problems you can encounter at an unknown time when you can’t control anything.
How has my life changed since my diagnosis?
Fear. I fear bleeding out if I get sick and drop. I cant be in the combat corp any more. I cant play contact sports and I have to be careful now with things I do. I have also gained a ‘Screw everyone but myself’ attitude because these people who criticise me haven’t walked in theses shoes.
My Worst / Funniest injury
My list of injuries is extensive, I have sunk to the bottom of the pool and needed mouth to mouth, I spilt boiling hot water down my leg and got 2nd degree burns, I got hit by a car going 60 km/h IF I WASN’T WEARING MY HELMET I WOULD HAVE DIED, I got concussion passed out on my back and vomited in my mouth… Obviously alive still but was very traumatic. Got sucked into a wash water drain pipe and tumbled around for 30 seconds before it spat me out.. thought I was gonna drown.
Dealing with ‘being sick’
I know my blood type off by heart, and I deal with it day to day as things arise. I enjoy every moment I have because you don’t know when it’s your last, sick or not sick, anything can change in the drop of the hat.
A little MORE
I am not currently going to a new job in the army, the people that gave me hell are now gone and been sorted out, I am back into training and my life style is going back to normal as I am slowly becoming used to my new routine.
You can contribute your story HERE – We would love to hear from you.