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.
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…
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…
I’ve been in and out of the hospital more times than I can count on both hands. With each experience, I’ve gained so much knowledge not only about my autoimmune condition but also about myself. In this post, read on for some tips about how to make you next in-patient hospital experience more comfy.
I previously wrote my first blog entry called “The Invisible Visitor” and have gotten feedback that some of you would like to know more about the specific symptoms that PAN has. While it can manifest in many different ways in different people, there are some core distinctions that direct doctors to testing whether you have PAN or not.
The bed felt cold, lonely and I couldn’t wrap my head around the fact that I was in it. It scared me. They told me they would run a few more tests and that there wasn’t anything to be worried about. I closed my eyes, took a deep breath, and felt the gentle squeeze of my dad’s hand. It felt familiar, reassuring.
We had been traveling the country over the past few months to get answers. What was happening to me? I was 12 years old and I couldn’t recognize myself anymore. Black-bluish scars and other red blotches of raised red skin bombarded my legs. There were days when I woke up and couldn’t get out of bed. My knees so stiff my mum had to put a warm compress beneath them to help stretch them out (later I would find out this is what arthritis is).
I would get ready for class and get so frustrated for doing just simple tasks like trying to brush my hair. These skin disturbances or “lumps” as I always referred to them as were spreading all over my body, and it wasn’t just that they looked bad, they were painful to touch and restricted the mobility of the joint they inhabited.
These amongst a myriad of other symptoms were my taste of what an autoimmune condition could do to you.
It would take me 8 more years, 4 misdiagnoses, 8 hospitals, 12 specialists to get “officially” re-diagnosed with Polyarteritis Nodosa.
Beginning the journey
From neurologists to rheumatologists and otologists (ok you get the gist, no pun intended, ok maybe it was) and numerous GPs & ER teams, innumerable breakdowns and 8 major flare-ups, is how I got to the Polyarteritis nodosa diagnosis.
Looking back, I believe I have learned so much and I feel that my lessons could help a lot of people. Polyarteritis Nodosa (PAN) is one of the many rare autoimmune conditions that exist today.
An autoimmune disease in my own words, is when the body believes there is an “enemy” inside, even though there isn’t. It’s when our body’s tissues attack itself, instead of this so called enemy that the immune system is detecting.
An autoimmune condition can manifest in many ways. There are more than 80 different autoimmune diseases discovered so far. One problem with these conditions is that some of them mimic each other. It is always best to get the closest diagnosis you can. While a lot of other Autoimmune diseases are treated are similar, being diagnosed can change the whole course of your condition, especially if you are getting treated for symptoms you aren’t even experiencing.
Research shows that PAN occurs more frequently in males, and in the age groups of 50-60. However, obviously cases like mine exist.
Juvenile conditions
Looking back and having all the knowledge I have about conditions like mine, I realise the process started in me when I was already 12 years old. I feel strongly about educating people about this condition, while it is a serious illness, it can be treated and you can live a full life. Albeit a little bit different where you will need to make some changes, but never lose hope. There is a large network of people out there going through similar cases even if it isn’t exactly PAN.
In the next few blog entries, I would like to tackle other issues that those with PAN or autoimmune conditions face and help give some advice to get you through your dark days.
Having an autoimmune condition can be very frustrating, you may go through a lot of times when this “invisible” or faceless enemy inside you really tries your inner strength.
Trust me, I’ve been there. It can be a lonely, scary journey, but you need to keep your friends and close. While it will be hard for them to understand, know that they love you and will learn to cope, as you do as your condition progresses.
In the future of this blog, I also want to make information more readily available for you. Here you’ll find all the information related to PAN and some other similar autoimmune conditions.
One stop info hub
I personally found that it has been hard to get all the information in one place, and have been researching for answers on my own for years. I think it is good to educate yourself to understand what is going on in your body and why. But it is also best to talk to your doctor. Be open and honest with them. If you feel you aren’t getting the support you need, it is okay to get a second, or a third opinion, heck I got twelve of them. I’ve seen all kinds of doctors, and with each experience, you can take a little bit of wisdom with you.
At the end of each blog entry, there will be links to these informational sites, the blogs themselves, however, will be firsthand encounters and information from a patients point of view. I believe we need to equip ourselves with not only medical information but “emotional” information. Conditions like these don’t just affect our bodies, they can affect our emotional well being.
What is Polyarteritis Nodosa?
Here’s a short video that helps explain PAN briefly:
Polyarteritis nodosa is an autoimmune disease is a condition in which your body’s immune system mistakenly attacks your own body.
With Polyarteritis nodosa, small and medium-sized arteries (blood vessels that carry blood from the heart to the rest of the body) become inflamed and damaged. The inflammation of the arteries affects many different organs, including the skin, CNS, peripheral nerves, gastrointestinal tract, kidneys, heart, joints, ear, nose, throat and lungs. With cutaneous (or skin) PAN, leukocytoclastic vasculitis can be seen.
If you want any advice, would like me to write about a specific topic or would like to share your story here please feel free to contact me via email or on social media.
