Author: Camille

Coping Tools and Tips

10 things I love to love

Heya! There’s so many things to love, that I thought why not write a list? I hope this list inspires you to write a list of your own, to remember that there’s always silver lining in dark clouds.

  1. Hubby / Love of my Life
  2. Watching a movie – funny, loving and upbeat
  3. Reading a book – again, funny, loving and upbeat
  4. Listening to music – especially from my #strokeplaylist
  5. Playing piano
  6. Shnuggling the Puffs
  7. Dance – something hip and groovy hehe
  8. Exercise – treadmill, dance workout
  9. Massages
  10. Writing in my diary
Coping Tools and Tips

The effects of side effects

  1. NO Sleep

Another 4am wake up, I woke up this morning fully awake. This is one of the worst side effects of Prednisone. I’m still on 50mg, one more week and then 40mg 2 weeks,30mg 2 weeks, 20mg 2 weeks and even slower then. The awful thing about Prednisone it keeps you up all night. So to say I’ve had  horrible nights of sleep the last few nights would be true.

2. Weight gain

Once again, I find myself in the same place. After every stroke or major happening they usually raise my Prednisone (this time to 1000mg/1m) and then taper it down to (60m, 50m, 40m, 30m, 20m down to 5mg). So in a way to get back at this, I try to do some sort of exercise everyday, at the moment I do 30 minutes on the treadmill walking until I reach 45mins.

3. Moonface / Cushings

After a week on any dose your face will start looking like a cushion or what they call a  moonface – exactly as it sounds (horrible) it is, my face looks like I ate a box of donuts a day (so far from the truth).  I just look, tired and I am.

Coping Tools and Tips

Another Stroke?!

So here I am, a 30 year old, I’ve had one major stroke so far, it’s over right? I travel to the Philippines with friends of family – only to feel so tired most of the time I sleep. Unusual. Yes?! I get back to Australia, have my usual MRA done and the doc tells me I had a stroke due to the reason my meds are not covering me. Greatttt -_- then, a couple of months later in March, I’m walking across Woolworths when I get the feeling that everything is going to the right side of my body, cue a surprise emergency room visit and I’m carried off to the Sunshine Coast University Hospital. 5 days later I’m released. Phew, such a whirlwind. It’s surprising because while in the hospital they tell me I’ve had not one but two extra small strokes. I can walk and talk so it’s not as impactful. But it’s certain. So I’ve had four strokes. Enough! I tell myself. This is not going the way it should be. I’m lost for a while. Trying to come to grips with the fact.

Guides

How to travel when you have a chronic illness

In this post, I share a few tips on how to travel when you have a chronic illness.

This post is for those who are able to travel. I know there are some autoimmune diseases that hinder travel. These include those conditions for some of us with symptoms such as extreme motion sickness. Others may be in wheelchairs (they can travel too, but might need to skip the hiking trails on their next travel adventure) or severely physically unable to do certain things on a trip. The key to travelling when you have a chronic illness is adaptation – you can do things just differently and a little bit more planning. In this post, I share a few tips on how to travel when you have a chronic illness.

Preparation

  • First things first, make sure your disease is under control before you travel. It’s hard to think of traveling when you’re in the middle of a flare-up and may have to endure long-haul flights. The whole trip is just that – every little bit. From point A to B.
  • INSURANCE. Yep, this point is in capitals because what happened to me when I was travelling to Bali last year, I was so glad I had it. I became a young stroke survivor and travel insurance proved more important than I ever knew.

Planning

  • The itinerary. Planning your trip is just like any other trip for the general population, only with a few more considerations. Choosing a destination? Ask yourself if your body reacts better in cold or warm weather. How far will your hotel be from the activities you want to go to? Think logistics in terms of your energy allowance aka “spoons” etc.
  • Medications. Travelling in and out so often I’ve found that it’s best to bring medications in their original packaging with a print out copy of prescriptions.  Try and get a contact number to the pharmacist or doctor in case of problems at immigration- some of the pain relief tablets are illegal in some countries without proof.  Always bring more than you need in case you find you need to up the dosage for any of them. Another tip is to pack at least an extra week of medication for just in case. Put some in your hand luggage as well as your check-in luggage (make sure you have a doctor’s signed medication list).
  • Doctor’s letter. Make sure to get a doctor’s letter that details your condition and any medications that you’ve packed this will avoid any chance of confiscation by an airport or border security.
  • Wheelchair Assistance. I never realized I could ask for wheelchair assistance ahead of time. I can walk unassisted but when I have late flights, it becomes very hard to walk. Given your doctor’s letter, you may be entitled to a wheelchair assistance. My first wheelchair airport experience was amazing and so much easier. Our 1 am flight was horrible but with wheelchair assistance upon arrival at 4am we were able to get through immigration and customs, hassle-free!
  • Always inform airline special assistance of your needs, especially on a long haul.  This allows for pre-boarding and bulkhead seating (if available) and it makes so much difference says a fellow Autoimmunee.

Luxury Travel

  • I’m not saying you have to book business class or even better yet first class (if you can go for it! lol) but for the general travelling population, we all know that costs you an arm or leg and I don’t think, especially having an autoimmune disease/chronic illness like us, that probably isn’t the price we’re willing to pay (pun intended). But there are ways you can make travel more comfortable without the crazy prices, just a few little additions to pack:
    – Eye Mask. Back in the day, haha ok so not so long ago, remember when aeroplanes used to actually include these in those little packs airlines used to give you when you first boarded? Well, due to cost cuts you gotta remember to bring some yourself and wow it makes sleeping so much easier!
    – Pillow/s. think neck pillows, no explanation needed
    – Noise-cancelling Ear/Headphones. I travel about 10-15 times a year and I only just got noise-cancelling headphones this year. Life-changing stuff. Seated near a crying baby on a long-haul flight? With noise-cancelling headphones, you won’t have to worry about it. I had saved calming music and meditations too, so with my cell phone/mobile on aeroplane mode, I was completely zen.
    – Fluffy Socks. On 10hour+ flights who want to battle swelling feet? You’re right – no one! Especially not those with chronic illness. As soon as I get on a plane, I make the move to swap my travelling shoes for comfy fluffy socks. I would add blankets to the tips but if you ask on the plane, they usually have some.

Conscious decision-making

  • This might sound like common sense to some but it needs to be said. Choose things to eat or drink wisely. E.g Avoid raw food,  street market foods and your inflammatory triggers (in my case, limit alcohol consumption to a minimum). Just because you’re on holidays doesn’t mean normal life stops. Don’t make things worse by completely ditching your routine back at home. Be open to new experiences, just be conscious of how some food and drink choices can affect you.
  • If you have more stringent dietary requirements, consider bringing premade meals or choose places that have a kitchen where you can cook your own meals while on the trip.

Digital helping hand

  • We live in a digital world – take advantage of it! Smartphones and other handheld devices make travel so much easier! And not just for the general traveller, but also for those with chronic illnesses. From searching for gluten-free restaurants in a particular location to enabling you to communicate special needs in a different language (eg Google Translate) using technology is definitely every Autoimmunees’ modern helping hand.
Coping Tools and Tips

5 natural ways to get to sleep (and stay asleep)

8 years before I had a bilateral pontine ischemic stroke I had migraines for 8 years. Repeat – eight! As you can imagine, I had bouts of insomnia and nights where sleep became very hard to come by. Here’s a list of 5 natural ways to get to sleep – and stay asleep!

The Calm App

I have to put this as my number one tip. Even til this day, I swear by this app and use it EVERY single evening. They share adult ‘bedtime stories’ that are calming after a long day and certainly sleep-inducing. I cannot rave enough about it. It’s available on both the Apple App Store and the Google Play store for Android phones.

Lavender Oil

Second tip – lavender oil! And if not oil, some sort of perfume from lavender oil. Put some drops on your pillow and the smell lulls you to relax.

Herbal Concoctions

My naturopath looked at my current medicines to see if there were any interactions to be aware of and mixed up a herbal concoction to sleep. I won’t give you the recipe for mine as I’m sure everyone and everyBODY is different. But look into seeing a naturopath or a homeopath to mix up something that will aid you to sleep. The connection I now have also helps alleviate headaches. I love it AND it’s natural.

Strenuous Exercise

You’ve probably heard this tip before but it really does help. Make your body exhausted (without hurting yourself, of course). I find going for a nice, long swim really gets me sleepy and on days I don’t – it can take hours to fall asleep.

Turn off anything digital around at least an hour before bedtime

Do you sleep with your phone next to you? Watch tv before trying to fall asleep? It’s time for a digi-detox. Things like TVs, mobile phones, tablets etc. keep your mind active, and you know what that means? Yeah, a hard time to fall asleep. Set some ground rules, charge your phone NOT next to your bedside, perhaps across the room. Turn off the tv and read something a little boring. Listen to a calm bedtime story (best tip ever!)

Coping Tools and Tips

Renewing Autoimmune disease blog 2020

Welcome to my blog, Autoimmunee. This blog is a collection of short stories, tips, experiences (mine and others) and everything in between.  Are you an Autoimmunee? You don’t have to have an autoimmune disease to be one. You can also be someone who cares for someone who has one; be studying immunology or autoimmune diseases; you might already be a medical practitioner, or you could just be someone who is interested in learning more. I am an Autoimmunee who has polyarteritis nodosa.

Polyarteritis Nodosa Writing

I’ve been writing since 2011, but I’ve had this condition since I was 12.  But I wasn’t officially diagnosed until I was 16. I have the cutaneous form of this disease meaning the kind that attacks the skin aka leukocytoclastic vasculitis. I write all sorts of things. The saying ”I live to write and write to live” couldn’t be truer. I’m a professional copywriter, soon-to-be author, and a part-time travel blogger. As I got more and more into blogging about Autoimmune-related health, I got tons of emails from people all over the world and that’s when I started to notice. People were actually reading my blog and not only that I was helping them through my blog posts. It’s such a wonderful feeling to know that I’ve been able to touch others through my own experiences – good and bad. I also share my very personal experiences having not one, not two, not even three! But four strokes. Phew! Talk about whirlwind, more about that later 😉 

What’s in it for you?

I hope Autoimmunee will become your partner through all things autoimmune-related. You can read my diary with everyday experiences and know that you are not alone in this. I’ll also share with you any lessons I’ve learned so far from personal experiences and from friends with other types of autoimmune diseases. I have lots of great plans and ideas for Autoimmunee and I’m excited for you to join me on this journey. If ever you have any ideas or requests for info/blogs you want to see on Autoimmunee.com please feel free to email me anytime, I love hearing from readers and making new friends.

Introductions

For a brief intro to my story and my autoimmune condition, have a read through “The Invisible Visitor” and “Waking Up to a Nightmare“. These two posts sum up what’s been going on. From my most recent alarming experience with a bilateral pontine stroke (they’re rare but it can happen) to how I first dealt with subcutaneous nodules.

Sending you lots of positivity, healing and love,

Cami xoxo

Guides

The connection between Autoimmune Diseases and Leaky Gut

For years I’ve heard of a thing called ‘leaky gut’. The first time I heard it, I imagined a dripping pipe. Little did I know, in a way, I was correct but also so far off from the truth. In this post, I explore the connection between Autoimmune Diseases and Leaky Gut.

What is a Leaky Gut?

Leaky gut, also known as increased intestinal permeability, is a digestive condition in which bacteria and toxins are able to “leak” through the intestinal wall. It can be caused by medications. Antibiotics, steroids or over-the-counter pain relievers like aspirin, can irritate the intestinal lining and damage protective mucus layers. This irritation can start or continue the inflammation cycle that leads to intestinal permeability.

Other causes / factors contributing to leaky gut:

  • alcohol
  • gluten and GMO wheat
  • GMO corn
  • intestinal parasites
  • stress
  • nutrient deficiencies
  • toxins and chemicals in foods
  • glyphosate (Roundup, an agricultural herbicide, which many farm crops are exposed to)
  • and more

What’s it got to do with Autoimmune Diseases?

“The typical medical approach to autoimmune conditions is to suppress the immune system with anti-inflammatory medications, immunosuppressives, corticosteroids, chemotherapy and other medications to try and slow down the damage. But this is a bandaid approach in that it covers up the symptoms and lessens them, but doesn’t do anything for the root cause or any real treatment. Suppressing the immune system is never a good idea as it can lead to a greater risk of other infections.” – Ross Walter

What can you do about it?

1. Get professional help > There is no better guide around Leaky Gut than a Naturopath who can review a holistic strategy of how your individual and unique circumstances might exacerbate or affect a leaky gut.

2. Diet >  The quickest thing I’ve read one can do is review your diet and what foods or drinks might cause the most irritation or sensitivity eg I don’t eat so much bread as I noticed, I always broke out in my skin the next day after eating it. A naturopath can help you do this by way of an elimination plan. I don’t like to use the word ‘diet’, it shouldn’t be a diet per se but a conscious lifestyle decision. Learn your inflammatory triggers. Becoming aware and more conscious of your food and drink choices is highly enlightening and helps to avoid some symptoms that might be caused by your leaky gut.

3. Probiotics > Add probiotics into your medicine regime with the help and guidance of a professional. Probiotics can interfere with your current medicines so don’t just go out and decide when and how much to take. When you’ve found someone to help you such as GP or a naturopath, my chemist recommends to go for at least 50 billion organisms per tablet and go for strains that include the LGG strain (and note that it’s heat-sensitive).

There are certainly heaps of ways to heal a leaky gut, for some further reading, check out these books:

Leaky Gut Syndrome 

Heal Your Leaky Gut: The Hidden Cause of Many Chronic Diseases

Leaky Gut: A step-by-step solution on how to reverse the leaky gut syndrome, reduce inflammation, relieve pain, restore your gut microbiome and regain energy

Coping Tools and Tips

Autoimmune Disease Short Story III (Outside)

Author’s Note: This is the third story written from a series of short stories called “Outside”. Which you can read more here. This story is fictional but I can relate to my character when some in their 70s try to compare the experience with mine, it’s not the same.

 

Staying up to watch the sunrise

“When I was your age…”

My uncle drones about his endless energy. How he and his friends at the time would stay up all night to watch the sunrise.

Meanwhile, I lie in my bed almost forced to listen to his stories.

“You’re lucky you’re so young” he continues.

I know in some weirded out version of reality that he has of me, of the…life I’m living. His stories help.

But they don’t.

I may be young in age, but I’ve never gotten the “youth” he so rapturously talks about.

My first “stint” in a hospital happened when I was 8.

I had to skip grade 3 as I was in and out of the hospital that year.

The next few years weren’t much better but at least I could go to school.

I’m 16 now, and this boundless energy he talks about is something I can only imagine.

I go to bed at eight on the dot every evening. This isn’t just because I get tired easily at night, it’s because if I stay up later, I pay for it, my body makes me pay for it – I lose control of my legs, migraines start, a late night pretty much equals a night full of vomiting.

* * * *

The Seniors’ Ball

“Serena, will you with me to the senior’s ball next week?” Matt, the most popular senior in my high school, asks me.

Knowing what I just mentioned that a late night has its price, what do you think my answer would be?

I decide to go. What?! you ask, let me put this in perspective, I’m 16 and like any other 16-year-old fitting in is important to me. At least I can appear I’m a normal 16. Although the price on my body will have to be paid later that evening. It will be worth it. I think.

I go to the ball, the night was wonderful. But like I said now I have to pay the price. My legs just make it to the bed. I lie curled up in a ball. If I don’t move the world will stop spinning, I convince myself. I glance at my bedside clock, it’s 3 am. I haven’t gotten to sleep. I’ve just been lying here, still in the fetal position waiting for this, whatever it is to pass. My limbs are throbbing.

Looking from the outside, I can imagine you think: Why would anyone knowingly do that to themselves?

Again, in a bid to appear normal; to fit in, this is my price.

“I’ve got arthritis now too, Serena,” my uncle of 72 says.

At least my uncle got to have an average experience of being young, I have never stayed up to watch the sunrise, I’m afraid if I even tried, the price certainly wouldn’t be worth it.

Author’s Note: In Serena’s story, we see a glimpse of the impact a medical condition has on a teen. It is a very different experience of someone 3 or 4 times her age.

My Autoimmune Journey

“The Storms Before The Calm” Coming soon: July 2022

Excerpt

“Now, you’re going to have to dig deep, relive some of your most painful memories”, the psychiatrist said as she handed me a sheet of paper. She had given some ‘homework’ throughout my compulsory psychology sessions. 

Her hands sat lightly in her lap, everything about her pose denoted grace (fitting, given her name – Grace). She had a calm and unaffected position as reflected by her gentle eyes as she looked at me. “This is a safe space, Camille,” she said. “Ok, I’ll do it”, I said. That was months ago, and now as I sit on my laptop to do my ‘homework’ that has now evolved into this book. I hope you can learn something along my journey. Whether it’s for yourself, or a loved one, know that you too are not alone…

Who’s talking?

Hi, my name’s Camille. I’m now 30 and last year I had a bilateral pontine stroke when I was 27 (a few months before I turned 28) and another few at 30 (last month actually). Yep, you read that right. People of all ages can get a stroke. It just happened to me at this age. I am the definition of a young stroke survivor. But that’s not the only thing ‘interesting’ about my story you’ll soon find out.

Purpose

When I was younger, I like to think that I would’ve loved to have a book like this. When you grow up with a chronic illness (a rare autoimmune disease to be a little specific) called Polyarteritis Nodosa, can make you feel very lonely, and misunderstood – and you have puberty to worry about on top of that. This is my memoir and I hope it will inspire you to live your best life now. There are a lot of stories and tips packed-in here and if you are a patient or a carer, some may say ‘learn from my lessons’ (I won’t say mistakes, as every decision I made helped me to learn something new).

Will you be a reader?

Personally, I find the best stories are the ones that make you think; question who you are; change you for the better; and, encourage you to improve on the experience of others before you. So that’s my highly ambitious expectation of the book that I hope that you will get to hold in your hands and even better, take into your heart…

Join my FB group here > https://www.facebook.com/groups/StormyReaders/