Laura Lushington, Calgary, 29
Laura Lushington was 13 years old when she came down with Epstein Barr Virus. She was exhausted all the time and had neck and gland pain. She had ovarian cysts in high school and was involved in a car accident that gave her whiplash. After the car accident, she began having chronic migraine but isn’t sure if it’s a direct correlation. On top of everything, she’s also developed a generalized anxiety disorder and depression, comorbid diseases to her chronic illness.
This past summer Lushington fell ill and started having the same symptoms she had when she was 13. Upon returning from her family holiday to the Maritimes, she collapsed. She went on to spend a month in bed with weekly doctor visits and was diagnosed with post-viral infection syndrome.
“It’s almost like my chronic illness journey is coming full circle,” says Lushington.
For treatment, she says she has tried everything under the sun. Between painkillers, medications, supplements, different diets, naturopaths, acupuncturists, chiropractors and Botox – she has never found a cure for her chronic migraine. She even travelled to the Mayo Clinic in Minnesota, where she was told her migraine was hereditary. She was sent back to her family doctor who was “handling the chronic migraine well.”
Lushington says she has adapted her life around her chronic migraine. She can’t handle a nine-to-five job, so she works from home as a freelance writer, blogger and a Safer Beauty Advocate for BeautyCounter. This career path works for her chronic migraine, as she never knows what kind of day she will have when she wakes up in the morning.
“I just work whenever I feel good, so if that means I feel good at 8 p.m., then I do work at 8 p.m. If I’ve had a bad week, then sometimes my weekends are filled with work and I’ve just grown to learn that’s okay and I’ve built my businesses around that too,” she says.
Lushington spends her days trying to prevent a migraine. She drinks enough fluids, gets enough sleep, avoids high stress and eats healthy. She also says chronic illness can greatly affect one’s mental wellbeing, as it is a lonely disease, and without the right support system can be extremely hard.
Despite her chronic migraine, Lushington says she wouldn’t change her life and has learned how important a healthy mind and body connection is.
Brandi LaPerle, Edmonton, 36
Brandi Laperle waited 20 years for a diagnosis with her endometriosis. She has also recently been diagnosed with severe trigeminal neuralgia. Her chronic illnesses have been a struggle for her mental health, leading to depression from the constant pain and a feeling of being misunderstood from medical practitioners and society. Photo courtesy of Brandi LaPerle.
As a young girl, Brandi LaPerle had many digestive issues and a lot of pain and heavy bleeding during menstruation. Growing up, she would see her mom and aunts experience unbearable pain, to the point where they were unable to leave the house and participate in activities during menstruation, so she thought her pain was normal.
“But I didn’t just have pain during my menstrual period. I had a lot of breakthrough bleeding and swelling gums and all of these pregnancy hormone symptoms that women may experience. But I wasn’t even sexually active.”
She says when she went to the doctor with her symptoms it really affected her mental health. She was always dismissed as having other issues and told the symptoms would go away as she grew older. She was repeatedly tested for STIs even though she wasn’t sexually active. She was asked intimate questions, LaPerle says doctors only ask women, not men, about their sex lives making her feel “slut-shamed.”
LaPerle didn’t receive a diagnosis until she was 31-years old – 20 years later.
She was living with endometriosis.
Endometriosis has also led to comorbid diseases and issues with other parts of her body.
She has tried almost every treatment listed for endometriosis. One she tried was called Lupron; originally developed, but failed, to treat prostate cancer. It was pushed through to market anyways and used to treat endometriosis. However, this drug sent LaPerle into menopause overnight, a process that should take over a decade, and rendered her chemically castrated.
LaPerle said she has hardly given consent or been informed enough on most of the medication she has taken.
“When it really plays on the mental health aspect for myself, it is watching life pass me by and wondering what I could’ve been capable of had I an opportunity to not have to live life day-by-day, hour-by-hour,” says LaPerle.
“Spending your good days preparing for the bad days is not the best for mental health care and self-care.”
The pain was so unbearable that one day she tried to kill herself. Not because she wanted to die but because she couldn’t handle the pain.
Since then, she has been working with a therapist to help strategize the mental aspects of her condition and have someone to discuss her chronic pain with.
LaPerle uses trivia games and her garden, which became a community garden this summer, to distract her from the pain and make each day worth living for.
Recently, she has also been diagnosed with severe trigeminal neuralgia on both sides of her face. It’s a chronic pain disorder affecting the trigeminal nerve, controlling sensation in her face and basic motor functions, like biting and chewing.
A medication for epilepsy and seizures used to treat the disorder can’t be taken with the medications she’s already on for her endometriosis, which created complications that put her in the hospital again.
She says she has made it through her pain with the help of family and friends, as well as support groups.
She is still awaiting another surgery to remove further endometriosis lesions on her bladder, bowels and rectum.
Jane Bolk, Edmonton, 28
Jane Bolk with her husband and son. Bolk suffers from an idiopathic angioedema that has not yet been diagnosed. Her symptoms would mirror anaphylaxis, but would come on with no trigger. After taking rituximab, an immune suppressant, in 2010, she is now in remission. Photo courtesy of Jane Bolk.
As an infant, Jane Bolk was misdiagnosed as lactose intolerant due to her genetic low blood pressure and a dairy allergy. However, as she grew older her symptoms, similar to anaphylaxis would trigger unannounced and were dismissed as related to her lactose intolerance.
In university, the reactions started happening at sporadic times without a trigger. The reactions would also be biphasic, meaning that she would have a second reaction shortly afterwards while in the emergency room, and then triphasil where it would happen two more times after the initial reaction. It was during one of those visits to the ER that the attending physician finally recognized the misdiagnosis.
When asked if she has received a diagnosis, Bolk says, “It’s classified as an Idiopathic Angioedema Not Yet Diagnosed.”
Her worst reaction was in 2009, when she was 19 years old.Her experience was actually made into a case study by immunologist Dr. Anne K. Ellis and Sassan Ghazan-Shahi, detailing Bolk’s bizarre condition and the different treatments done.
The 2011 study, Severe Steroid-Dependent Idiopathic Angioedema With Response to Rituximab, explains how Bolk was admitted to the hospital for prolonged periods since the swelling of her face and airways would continue if she was not on constant steroids administered intravenously.
After several bouts of different medications failed, a seizure and a tracheostomy tube, Dr. Ellis attempted rituximab, a version of chemotherapy that isn’t only for cancer treatment. She was in the hospital for six months during these treatments. Her body reacted well to the medication and she was in remission for about a year, until another relapse occurred.
“So the first time I was hospitalized, because I had tried a lot of different medications I actually didn’t weigh enough to finish the chemo. My immunologist figured I would relapse and a year later I did relapse. But because they already knew what the treatment was, I was only in hospital a month. [I] completed the full cycle of chemo then and [have] been in remission ever since,” says Bolk.
Bolk is now married with children and hasn’t had any relapses since finishing ER treatment. However, she says she has to be careful with her health as she can no longer produce antibodies, so movie theatres, shopping malls and airplanes can be a concern for her.
As for her mental health, Bolk says her unique condition isolated her, with no support groups to turn to. She also feels frustrated trying to explain the seriousness of her condition to other people or medical practitioners that don’t understand or know her story. She says explaining the severity of her disease without an actual diagnosis is very difficult.
However, Bolk feels that her disease has impacted her life positively. She tries to live in the moment and focus her time on being with the people she loves. She is grateful to wake up in her home every day with her family instead of a hospital bed. Bolk also does not let her disease define who she is.
“I am a mother, a wife, an avid lover of the outdoors, soccer player who dabbled in ballet, amateur pastry chef and fledgling violinist who has angioedema NYD. I am not angioedema NYD. It is also good to remind healthcare professionals. You are a person first and an interesting diagnosis second,” Bolk says.
This story appears in the November-December 2018 print issue of the Calgary Journal, on stands now!
Editor: Mariam Taiwo | mtaiwo@cjournal.ca