My Not So Fairy-ish Tale
I thought it was time to share with you the battles I've faced thus far and what lead to me eventually reaching a diagnosis. It's been a long and exhausting process so this but I'll do my best to not make it long and exhausting for you ;)!
Once upon a time, in a place not far away at all, lived a girl called Cayla, who definitely wasn't the fairest of them all. Born in the manmade forest of Johannesburg, Cayla was the luckiest last child born into an incredibly magical family. Her parents and two older siblings were the very best people and each of them, in her opinion, had magical powers. Her dad was her very own superman; strong, stern, wise, hilarious at times, and in touch with the universe - having psychic abilities. Her mom, her superwoman, was a natural and devoted nurturer; loving, compassionate but feisty and protective about her beloved children. Her sister another nurturer, in tune with nature and healing ways, her guiding grace and confident with ever flowing wisdom. Her brother was her true companion; there with her every step of the way, always one step ahead to make sure it was safe and that she was okay. She fell into the honey pot of families, the best in all the land.
Her start was somewhat bumpy. With a chocking cord wrapped tightly around her neck, she was born fighting to live, some things never change. At 3 months old she was diagnosed with lymphoma and only given another 3 months to live, this shook her parents to the core - luckily for them, the first two doctors were wrong and she had been misdiagnosed. The rest of her childhood was rather ordinary, excluding the anxiety, always being in the walls with injuries, some common colds and childhood illnesses and a few other hiccups along the way.
Cayla was an adventurer, always exploring the outdoors, looking for animals and insects to make friends with, keeping them in her hair, her pockets or hanging off her clothes. In absolutely distressing moments of finding wounded animals, she would take them in, care for them and nurse them back health, devoting herself to their wellbeing. If they were too badly hurt, she would hold funerals in the rose garden and bury them in beautiful boxes. Her love for helping and healing was there from day one.
As Cayla grew and matured, she often fell ill with repeated bouts of sinusitis, chest and throat infections. She also suffered from some stranger diseases, often occurring more than once, such as german measles, mumps, chicken pox and glandular fever. Cayla fell ill so often that it almost seemed impossible. People would assume that she was lying or called her a hypochondriac. They would roll their eyes and would suggest it was all in her head. These comments were difficult for her to process as she truly was so sickly, but after a while she started to believe them. Often she experienced non specific pain, with causes never identified - but the pain was there and it was real. She finished school having missed many, many days owing to being sick. Knowing that she wanted to dedicate her life to helping and healing people, but afraid she didn't have high enough grades to support her, she decided to take a detour and complete a Science degree first. The illnesses kept knocking her down, along with the snarky comments of some of the people around her. No one ever looked deeper into the repeated bouts illness, to try and see the bigger picture. Despite this she continued pushing through and persevering. After 7 years of studying, intense devotion and hard work, she finally became a Doctor.
She started her first year of working in the Hospital with extreme excitement, commitment and passion, but soon after she was dealt a tough card - she had fallen ill with Pancreatits. Pancreatitis is the inflammation of the pancreas, an organ that is found in the abdomen, behind the stomach. It is responsible for producing digestive enzyme to help digest food and aids in the absorption of nutrients .It also produces insulin and other hormones that partake in digestion, as well as producing bile. Pancreatitis is one hell of a b*tch! The pain is indescribable and something that no one should have to experience. A CT scan revealed a sausage shaped pancreas - a medical term I swear - which can indicate that an autoimmune disease may causing the inflammation. So the doctors set out on a quest, to look inside the mysterious land of Cayla’s bizarre body and find the long lost cause. They fought long and hard, and whilst there was a positive C-ANCA, there were also other autoimmune markers positive for lupus - the results were conflicting. During this time, Cayla did a tremendous amount a research about C-ANCA positive results and what they could mean. Repeatedly the tests came back negative and the cause was never really conquered - “results were inconclusive.” This left not only her dumbfounded, but her doctors too.
The rest of the year was riddled with bouts of illness (as per usual), indescribable exhaustion, relentless anxiety, irritation, malaise and unfathomable stress. Don‘t get me wrong, there were magical moments too; Cayla couldn’t be happier that she was finally able to practice what she loved and despite the exhaustion, illness and pain in her body , she passionately continued to pursue her dream as a doctor. She had thought to herself that perhaps the stresses on her body could potentially be caused by the strenuous work of internship, but deep down she new that something wasn’t quite right.
Towards the end of the year, Cayla was in a rotation that made her heart burn bright, Paediatrics. She absolutely adored working with children; it could have even been part of her calling, and she was excited to get to work and see her tiny little patients everyday. Unfortunately, despite the love she had for her work, she still found it increasingly difficult to get out of bed every morning and to get herself through each day. Calls became almost impossible - working for 26-30 hours straight at least once a week, as well as working most weekends too, on top of feeling ill, it all began to take an immense toll on her body, as it would anyones. Cayla then had a small flare, the fatigue had sky rocketed, the malaise was unbearable, fevers and night sweats were a regular occurrence and her eye had became red and painful owing to Episcleritis. She began to think she may have picked up TB whilst working in the hospital and her immune system was taking a hard knock. The tests were negative, however, she had personally repeated the autoimmune work up and low and behold, the C-ANCA was positive once again.
On review of all of her results, Cayla noticed that the laboratory had not repeated the C-ANCA antibody level with the repeat autoimmune workup in during the pancreatitis episode, hence, the results had all come back as negative. A detail that had been missed by her doctors and was overlooked at the time, was the vital missing piece to the puzzle. Cayla knew what this could mean, having recently qualified as a doctor and having done hours of research on the topic, she knew she needed to see a Rheumatologist immediately. The tale of trying to find the right doctor is one for another day. But after searching, and some epic fails - not to mention a misdiagnosis and some doctor bullying- Cayla eventually found her team and was confirmed to have C-ANCA positive vasculitis - most likely Granulomatosis with Polyangiitis/GPA (formerly known as Wegner’s Granulomatosis). As the result of continuing to work, despite being ill, in an intensely demanding occupation, Cayla ended up with Burnout and Adjustment disorder and was asked to stop working for some time to allow her body to heal.
She was recently admitted to hospital for further tests and work up, including more blood tests, CT scans and an MRI. During the admission, she was seen by an ENT (ear, nose and throat specialist), as GPA usually wrecks havoc in the sinuses. The ENT found that the lymphoid tissue in her throat (tissue involved with the immune system) was all enlarged and was causing airway obstruction, the most likely cause, although exceptionally rare, was the vasculitis. Cayla was booked into theatre soon after and the tissue was surgically removed.Unfortunately, Cayla had been taking corticosteroids as part of her management and had three large doses of corticosteroids before her CT scans as she has an allergy to the contrast, so the tissue samples that were sent off from the operation did not show evidence of GPA. Steroids dampen the immune system and can resolve any vasculitis in the tissues, therefore, the samples sent were clear of the disease. After 10 days in the hospital, Cayla was discharged home. With the burnout worsened and results still pending, Cayla sits and waits to find out what the next step is.
Years of illness and pain, many doctors appointments and tests, countless antibiotics and other medications, it felt like a never ending story. Although the end is no where in sight, at least she now knows for sure what she‘s known deeply for many year - it wasn’t all in her head, there was something wrong. She is positive and committed to healing, she won't let this get her down.
It is not an easy pill to swallow, being diagnosed with an autoimmune disease. It will change your life forever, it’s frightening and overwhelming, but at least a diagnosis is validation that the years of suffering were real, and a plan can be made to finally start the healing process.
My story is so mild compared to others I know, I was actually lucky that my diagnosis came so “soon”. There’s no question that being able to facilitate my own work up and being a doctor helped me tremendously. It should also be noted that there have only been 3 documented cases of Granulomatosis with Polyangiitis presenting with pancreatitis, so I do not blame or shame any of the doctors who were working me up at the time, for not reaching this conclusion. The rarity of it combined with the laboratory not repeating the C-ANCA test - it’s no wonder it was missed. My new "dream team" of doctors still revel at the bizarre wonder that is my body, fascinated by the weird way it manifests the disease.
As a person having gone through what I have, all the while knowing that despite what others said, including the doctors, something was genuinely wrong, I encourage those who are experiencing a similar situation to mine, to keep fighting. No one else knows your body the way you do, no one else can feel what you feel, so keep searching for the answers and for the right team to work with you. It is a long, hard and exhausting road, requiring the very best team made up of of family, friends and doctors. So please, never give up on yourself, things will get better.
**Please know that hypochondria is a very real condition deeply affecting many people and I in no way wish to detract from or down play the severity of the condition or disrespect anyone who suffers from it. **
Stay strong, always!