The holidays have arrived, and some of us may be feeling a range of emotions, and most likely, some level of stress, especially since we're still amid this global pandemic. I had the pleasure to be invited to present for the monthly Mito Expert Series a couple of weeks ago to discuss accessible ways to relieve stress during the holidays. MitoAction provides support, education, outreach, advocacy, and research support for those affected by mitochondrial disease.
During the presentation, I provided concrete tips to help cope with the stress of the holidays. It was so well received, I decided to write this blog as it may be helpful for others to manage stress during this chaotic time of year. At the end of this blog post, I've also provided links to my talk's audio and video recordings. I urge you to check it out as you might find new ways of reducing stress during the holidays.
Read moreI went home empty-handed, beyond exhausted, and worried something serious might happen before I could see my doctor. I was shocked by how eerily similar the two events were. Medical gaslighting has been traumatizing and triggering and costing me a fortune in therapy.
Read moreWhat I learned is that if you are trying your best then that is usually good enough. The problem isn’t you per se, but the other people. I was trying so hard that I realized I was trying way harder than other people and not getting good results. I was always supportive of people, so I would go to volleyball games to cheer them on or stay after school to help. I was always available if somebody needed help with their homework, someone to talk to, or any help they needed. When I needed their help, I experienced a lot of ghosting, and not being invited was difficult.
Read moreMany chronically ill patients feel as if they should be grateful for their providers at all times, even after medical errors. Anger can tell us when a situation is unfair. It can motivate us to make positive changes to improve the healthcare system. This can be accomplished by self-advocating in-clinic appointments, coping with a new diagnosis, getting honest with providers, or navigating relationships, all while dealing with medical trauma. I hope you can join us at our next discussion group or give us a follow on Instagram: @pop_medicalptsd!
Read moreHave you ever walked into a room and forgotten what you came in there for? Was it to grab something, or to do something… whatever it was, poof, it’s just gone, forgotten. It happens to all of us once in a while. Now, imagine this happening all day, and sometimes for days on end. Instead of random blips, it happens often and disrupts your life. Welcome to the elusive symptom known to most as brain fog. The inspiration for this blog is because it’s been my basic mode of operation the last month while being in a flare-up (sudden worsening of symptoms). It’s been cloudy with a chance of staring off into space. Thankfully the clouds are parting and I got clarity enough to write this post.
Read moreI like order, structure, predictability, and while I can’t always have all of those things with my illness, there’s a certain amount that I do expect during the workday. But that day, suddenly, it was the opposite of all of those things, now I had a choice: sit here and complain about it or implement a technique I’d been learning in a professional development course. I already knew the first one wasn’t going to work, so I might as well try the second. What I didn’t expect was how amazingly effective it was going to be.
Read moreYet, while I was in college, I felt a whole new level of emotions. When I was a junior, I felt a mixture of sadness, then anger, and then resentment. I was worried about my next step in life. I was afraid to ask my mom to discuss my family planning future with my geneticist or endocrinologist. “What if I can’t have kids?” I’d often wonder.
Read moreThe deeper I go into teaching accessible yoga and other wellness modalities, the more I realize trauma is pervasive and needs to be respected. Trauma is a universal and common reality of being human. This is intensified during this global pandemic, enveloping us in collective grief. I realized I needed and wanted more trauma-sensitive training to equip myself better to hold space for those affected by trauma. I am honoured to graduate from Shayla’s Your Movement Therapy Trauma-Informed Yoga Teacher Training (TI-YTT).
Read moreGoing anywhere during this pandemic for me is tricky. I’m severely immune-compromised, so I have to be very careful since I most likely will not survive; that’s just fact. So I have to psyche myself up to go to the Emergency Department (ED) during this pandemic since it’s a scary prospect. Even before the pandemic, I’d have to be careful not to catch any virus or infection.
Read moreI spent my days on as strict a schedule as I could manage, ensuring that I remained in complete silence. I disconnected from all electronics. I even turned off all of my clocks. Most of the time was dedicated to specific meditation practices and prayer, reading The Bhagavad Gita, spending time in nature, and resting in mindful reflection. My goal was to slow my thoughts and abstain from as many external influences and inputs as possible. Hoping it would allow me to gain some peace of mind…
Read moreI also enjoy dancing and miss the days when I was able to dance every week. I dance any time I get a chance to do so. Sometimes I will take a class with my friends, or we go out dancing somewhere. I have done all these things while learning how to live, love, and manage to live with a urea cycle disorder. As someone who has a rare disease, I want to share my story with others to help others going through similar struggles and strides. Even though we might have to climb these rare-disease-mountains that does not mean we have to climb them alone.
Read moreThe sad thing is that I was going so far out of my way to accommodate others, that I was putting my own mental and physical health in jeopardy. This was when I began to realize something. The only person who has any say in the validity of my life experiences is me. People may be “uncomfortable” hearing about what I’m going through, but I guarantee they’d be far more “uncomfortable” actually living through it. I also realized that as an individual suffering from a rare condition, I have a unique opportunity to change the narrative and stigma surrounding this community. But the only way to do that is to stand with courage in your convictions and speak your truth. If people, in turn, choose to judge you… guess what? They are not “your” people.
Read moreRare Disease Day is an opportunity to enlighten the public about issues affecting rare disease patients such as overcoming health inequities - including the lack of understanding around rare conditions and challenges patients must face to even get an accurate diagnosis.
Read more30min. Accessible Yoga Video.
The hips represent our external and internal capacity to be mobile. It represents the ability to be courageous to move forward and confident in doing so. The pelvis represents our relationship with autonomy as it bears the witness of “who I am” and what we consider to be fair or unfair.
Read more“Healthy” is not a one-size-fits-all. It has taken me years to accept that when I go into crisis I will have to do certain things that society considers “unhealthy” in order to stop long-term damage to my muscles. As the patient, it’s important to remember your worth, and trust in yourself and your care team to know what is best for you—not your co-worker who swears by intermittent fasting. I’m grateful that I have stopped trying to blend in and hide my quirks and instead welcome the questions from others, even if their approach could use a little work because that is best for me.
Read moreWe all deserve this magical life we have been given, regardless of our differences. Everybody lies, to others and to ourselves, but we can choose not to, and instead let the truth tell us who we are.
Read moreMindfulness and gratitude are not emotional or facial expressions. Mindfulness and gratitude are states of being. They are when you can put your stress in perspective, convert negative thoughts into more compassionate ones, and accept life the way it is without having unrealistic expectations for how it could be better. They are about accepting grief over temporarily not seeing your loved ones; undergoing what feels like untimely prolonged states of uncertainty; focusing on the people and things in your life you do have rather than what you may feel is missing. It’s about scattering your life, time, and attention so they are filled with variety, diversity, and structure rather than invariability, tunnel vision, rigidity, and spiraling thoughts.
Read moreWhen I hit over 200 days of being alone in my bachelor apartment in Toronto, I decided that I would carefully make the trek up north to my parents house and quarantine with them for the holidays. My mom has a similar illness as mine, so they’ve been isolating just like me. I felt comfortable and safe making the temporary transition, if it meant being around other humans for a little while. I’m happy to have had hushed holidays just the three of us. No one was stressed.
Read moreThis creatively written blog post discusses the nuanced thought patterns of those living with a rare and/or chronic condition. Touching on some common coping mechanisms we use to “fit in” this ableist society. It shines a light on the ways we may hide our illnesses instead of being open about them, especially with those closest to us.
Read moreSelf-advocacy for me looks a lot like communication between my healthcare team, insurances, pharmacists and my social system. My social system includes people like patient assistance managers, but it also includes my parents. Sometimes it can include social workers who are employed by hospitals or insurance companies. Making sure we are all on the same page and that my medical treatment is available and affordable, on top of managing daily life is a big part of my own autonomy and individual freedom as a disabled female.
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