The first diary entry
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.
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:
An in-depth explanation of Polyarteritis Nodosa
For a detailed description of PAN take a look at http://www.empowher.com/media/reference/polyarteritis-nodosa
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.
Polyarteritis Nodosa Support
- To read about other people’s experiences with PAN, surf onto http://www.experienceproject.com/stories/Have-Polyarteritis-Nodosa/639792
- For other autoimmune conditions, and also a sense of community, there are a few on Facebook, for instance: Autoimmune Angels and for PAN specifically, try: Men and Women Living with Polyarteritis Nodosa.
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.