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.
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.
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.
“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…
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.
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…
A few weeks ago I joined some groups such as “genyus”, whom of which have greatly helped my adjustment after the stroke and coping daily with others who understood. Inspired by groups like them, I wanted to talk about some of the challenges young stroke survivors that people born between the early 1980s to the early 00s might relate to.
We’re not kids but we also probably haven’t had some major life experiences as our more mature young stroke survivors (giving birth…yet etc). We also love technology! Oh, and we are super energetic (well, we try to be lol) Ok, this is being super stereotypical but seriously wanted to talk about others like me even though all of us are certainly different we are also alike.
This is written for 25 to 30 something-year-olds but if you’re a bit older and can relate I would love it if these tips helped you too 🙂 Here are some things I’ve learned from my own experience:
Most young stroke survivors find it hard to sleep. Even though we fatigued easily during the day and feel tired…weird huh? I love this Calm app that I found Android and found that it really helps. I listen to “meditative sleep stories”..
Again, something I use on my android phone (you can even go a step further and get a fit bit something like that). I use google fit, it automatically counts my steps throughout the day and I add my exercises. I currently do 4km in 12 minutes on the cross trainer (starting the intensity at level 1 for the first 3 minutes, then level 2 at 3 to 6 minutes, level 3 at 6-9minutes and finally, at level 4 9 to 12minutes); 10 minutes on the treadmill (about 800m) and 5-6 minutes on the rowing machine (or equivalent to at least 500m).
I set the goal of at least 30 minutes of exercise every day if I can. Then I add a few minutes every day doing some balance exercises on a balance mat. I guess the theme for me surrounds complacency – do not get complacent!
Before the stroke I had relatively healthy habits, even bordering on vegan, but since the stroke and being put on warfarin I cannot any green, leafy vegetable or anything high in vitamin K. As usual diet restrictions note, everything in moderation but definitely NO soft drinks, alcohol or overly processed foods (bye maccas/McDonalds!).
Like many young women at our age, also known as birthing age, pregnancy is a big question on my mind and while I don’t have all the answers and probably no one does know everything, joining a group really helps to alleviate fears and ask questions. Try joining groups like I did for example: Folks with strokes (Mothers).
Getting back to work is certainly a challenge, not just mentally but physically too. Having a supportive team, boss and partner can definitely help the transition. I have been back now for about month. I have noticed that although I am much slower, I can do it. The physios and psychologists recommended me to go back but with limited expectations.
Where I could write 4 blogs a morning for other companies, I can now only write one in the morning as I find it hard to focus after and I get fatigued/tired easier. So I only work half days at the moment. They also suggested that every hour I take a few minutes to rest and do something else, like walk around, do some squats, stretches and re-focus my eyes (being a copywriter my eyes are always on a screen).
I have an international license but they drive on the other side of the road in the Philippines than in Australia. So you can imagine that is confusing even without having a stroke. I don’t have any tips around this but I have been told after a stroke you are not to drive for several weeks after.
Just like with my autoimmune condition, I always think of the “Spoon theory”. You have limited spoons now, no more unlimited spoons like before, so pick and choose your battles or outings.
Heading out tonight? It might mean skipping that afternoon run. If you’re planning to go to a party tomorrow night, make sure you rest up before then to conserve energy.
Use your phone reminders – I always seem to forget to take medicine on time, so make sure you have a regular alarm to remind you.
Remember safety first and go slowly! If you are on warfarin too, avoid accidents like cutting yourself or falling down. The first few weeks getting out of rehab, my hubby helped me to walk everywhere (he was the ultimate spotter) but when I am by myself, I am extra careful and cautious of where I am. No rushing! That train or bus can wait or you can catch the next one, do not risk falling over! Not only do you now bleed easier but you also have uncoordinated movements that unexpected falls could make you severely dizzy or worse, cause another stroke! Heaven forbid!
I absolutely love music and it certainly helps in the path towards recovery. Check out my Spotify playlist and you can add your own tunes too >
Each month I set a goal to work towards. Next month I am joining a 5km fun “run” (or walk in my case).
Instead of comparing to what you looked/acted like before the stroke, compare yourself just after the stroke. I could hardly walk or talk, so when I look at it this way, I’ve come a long way!
Sure, if I compare to before there is a big difference, I am a lot slower and unsteady now but I am slowly improving every day, even if it is the subtlest of changes.
Also keeping a diary is super therapeutic, you need to face your feelings not hide from them. Observe them! If you’re angry, why? Go through the motions and express them in your diary, this can be a good log for looking back and also you can see if your handwriting improved too (mine was terrible just after the stroke, well still is haha).
Remember “the more you do, the more you are”. So, don’t let yourself forget how to write, you need to write! It might look super messy in the beginning but after constant practice, it gets better. Even if you didn’t have a stroke, if you didn’t write for a long time, you would find it hard to write neatly again.
Finding your voice
Just after my stroke I lost my voice, literally, at first it was really hard to make sounds, then the words were mixed up, and then I just ended up really husky and breathy like I just had a cough or something.
Before the stroke, I loved to sing so you can imagine losing my voice was definitely a challenge! With a series of vocal exercises (such as a bottle filled with a little water and straw) I have slowly built my voice back and this coming Monday I will see an ENT to do a vocal clinic test to see how the stroke impacted on my vocal chords. I have done previously, but it was not to the extent of my ability to sing.
Currently, I can hum a tune, which is a huge deal! But I can’t hit higher notes or access my mid-range which I see as a part of my voice is paralyzed, or frozen, it feels tighter than usual. I have come across a couple of sites in the meantime: Dysarthria and Singing.
Why not me?
The doctors believe thrombosis caused by my autoimmune disease caused the stroke. But why? I thought to myself. It’s rare I found out. In a video I once posted on my personal social media, I told the story of one night at like 3am I looked in the mirror and I was angry. I kept asking “why me?” but the question I then changed it to was “why not me?”. It is a powerful thing to look in the mirror and ask why not, instead of placing blame on someone else or something else, it’s on me, which leads me to the “real” why question, the “why” that I could control. “Why did you survive?” and it’s up to us to answer that, we are survivors for a reason, hold onto that and keep going!
It may seem that I am not that bad, well let me just start by saying thank you, I work hard at appearing “normal”. Sure I have my days, ups and downs, challenges just like any other stroke survivor, what keeps me going is the love of my family – especially my hubby. I know it can be super hard dealing with emotions but make sure to show appreciation to your loved ones! If you ever need a friend to vent to or share your accomplishments, I totally have your back too! 🙂
I hope you find these tips helpful, what about you? Any tips to share for your stroke recovery?
“Winter is coming!” if you’re a GoT fan, this may mean a little more to you, but even if you’re not, I’m quite serious – winter is coming and if you’re like me, your joints are already letting you know it’s starting to get colder. Having an autoimmune disease winter is usually an interesting time, to say the least. In this post, I want to share some tips on how to keep warm and pain-free this winter.
Ok, so it doesn’t get too cold, snow is probably the last thing that could happen when it’s winter here in Brisbane, but it does get cold, especially for a person with an autoimmune disease like polyarteritis nodosa. One of the best things ever invented to help warm up cold muscles, aching joints and overall exhausted bodies is a warm bath! If you don’t have a bathtub, don’t despair, you can still warm up with a hot foot spa (fill your foot spa and basic basin and stick your feet in!). This can help you raise your core temperature and signal to your body to relax.
Make a Muscle Relaxing Detox Bath. Add some Epsom salts (about a small handful); some pure essential oils like peppermint or lavender (25-35 drops); 2 teabags of your favourite tea (open up and sprinkle contents in the bath; you can rinse after); and a small capful of Olive Oil (this makes the tub slippery so be cautious, the oil acts as a skin cleanser and moisturizer). Then mix it all together until you’re ready to get in. Try to let your body soak for 15-30 minutes.
Apple Cider Vinegar Bath. Bathing in apple cider vinegar can help reduce the symptoms of pain and arthritis. It also aids the mobility of the joints greatly as it reduces the excess uric acid build up in the body. Just add 1 to 2 cups of apple cider vinegar to a warm or hot bath and soak for up to 30 minutes. Make sure to drink lots of water before and after your bath.
Avoid alcohol and drink more water instead
Alcohol causes blood to rush towards your skin, lowering your core temperature. It also keeps your body from shivering, which is a key part of how you stay warm. Drink as much water as possible because if you’re dehydrated, your body will send the fluids you do have to essential organs like your heart and brain, instead of your fingers and toes. For people with poor circulation from conditions like diabetes and Raynaud’s Disease, that lack of blood flow can worsen hand and foot pain.
Arthritis can affect people at any time throughout the year, but the winter and wet weather months can make it even harder to manage symptoms. The cold and damp weather affects those living with arthritis as climate can create increased pain to joints whilst changes also occur to exercise routines. We have an instinct during winter to hibernate; however, a lack of physical activity will cause joints to become stiff. Exercise eases arthritis pain. It increases strength and flexibility, reduces joint pain, and helps combat fatigue. To manage arthritic conditions during the cooler months, individuals need to plan physical activities that are easy to do during winter, such as:
Walking indoors, such as around shopping centres
Household chores, like vacuuming
Playing with children
Swimming indoors, such as Hydrotherapy
Taking an aerobics or yoga class
Listening to music and dancing
Using the stairs instead of the elevator
Stretching or doing light exercises while watching TV
P.S How cool would it be to have a heated, indoor infinity pool?
Have you got some more tips to keep warm and pain-free this winter? Share them below.
If you have an autoimmune disease, you’ve probably been told to try to eat whole foods as much as possible in order to maintain your ideal weight. But in instances where you find you can’t, look for package food with food labels with nutrition facts like below. Earlier this year I discovered what to look for in food labels aka nutrition labels and now I want to share with you what I found.
My own ideal goals, eat foods with these ranges on food labels:
Sugar: ~<10g (4g is approx. 1 teaspoon of sugar)
Dietary Fibre: >4g
Saturated Fat: <3.3g
How to understand food labels according to Australia: