Tuesday, September 20, 2022

Constant and Continuous: Chronic Back Pain

It is all too often that we may underestimate the symptoms associated with chronic conditions, especially when acutely symptomatic individuals seem to be in more distress. This week we aim to shed light on chronic pain which is all too often overlooked. 

Chronic Pain: Several factors can affect an individuals feeling and perception of pain including physical and psychological factors. Chronic pain is known to arise from various stressors to the body including trauma, infections, or autoimmune conditions. With ongoing chronic pain, significant impacts on the quality of life can be experienced by individuals usually at the expense of their own enjoyment and ability to function. Chronic pain is not something to underestimate as merely a "feeling". Several neurological changes in the body cause the body to become more and more sensitive to an ongoing pain stimulus. And often the progression of this sensitivity never recovers with individuals finding themselves combating the pain for the rest of their life. 

..........

"As an adult in their early 30s, I wake up feeling like I have been hit by 80 years of life. I am exaggerating, but some days it truly feels like so. 

In my late teens I was part of a car crash. Everyone in the car, including myself, survived. However, that day on the cold pavement I lost my "normal" youth. I broke several bones including a couple of vertebrae. The bones healed, the bruises faded, and eventually one day I looked "normal". But, I had changed. I had chronic pain in my back. 

My dream had been to travel the world in my twenties. I wanted to explore this planet we call home, go on back packing trips across Europe, relax on a beach in a tropical country and visit historical sites globally. With this accident, the recovery and back pain, this dream became bleak. 

After my recovery I visited my family doctor, numerous ERs, and urgent cares, but honestly I found no relief with medications, chiropractors or massage. At one point, I started to realize that my consistent visits to ER might come off as drug seeking even though that is not my intention. 

I spent numerous months on a wait list to see a physiotherapist that wouldn't cause me to go bankrupt, as I was barely working. Once I started the exercises, I found that relief I was looking for. I feel that I truly needed motivation to keep up my exercises and fight the demon within me that kept yelling "stop trying, what is the point". I do feel broken some days and that life is unfair. I was a healthy person with no illness, I rarely went to see a doctor but this accident changed my life by taking away my good health that I used to flaunt. 

Today, I feel better but there are days when the pain is bothersome. At this point I have decided to make my peace with "chronic back pain". I am a healthy individual. This pain can not stop me from continuing to live the life that i dreamed of for myself."

                                                                            - Anonymous


Tuesday, September 6, 2022

Sweet to the touch: Type 1 Diabetes

You must have heard of diabetes. Its incidence and prevalence is increasing in North America. But did you know there are two very distinct types of diabetes. Type ONE diabetes mellitus and Type TWO diabetes mellitus. Our story today is from an individual that has conquering the highs and lows of a type one diabetes mellitus diagnosis. 

Type I diabetes mellitus is a chronic condition in which the body mounts an attack against itself. The pancreas is the prime victim where destruction of the insulin-producing cells in the pancreas cause the body to have difficulties with automatically managing blood glucose levels. Insulin is a key player in managing the amount of sugar molecules present in the blood after meals, and when this player is MIA, external precautions are needed to prevent blood sugars from going into the DANGER zones. Type 1 diabetes is usually diagnosed in early childhood. The diagnosis brings with it increased risks for several neurological, heart, kidney and eye complications down the road along with a dependence on insulin therapy and strict monitoring of everything you eat. We can only imagine the discipline and strength one must need to tackle this beast of a diagnosis.

..........


"I was 13 years old when I was diagnosed with Type I Diabetes. After that life was a whirlwind of diabetes education, numerous follow ups and INSULIN. I want to take this opportunity to focus on how my experience with this diagnosis has been and my point of view on living with diabetes. 

As a teenager with diabetes, I was angry and scared. Angry that I got diabetes; angry that I couldn't be a "normal" teenager; angry at my fate. Alongside all the anger, I was petrified of what this disease could do to me. I have seen family members on dialysis because diabetes ruined their kidneys, I have seen my grandma deal with diabetes related nerve injury and I have seen her hospitalized for too low and too high blood sugar levels. I woke up most mornings anxious how my day will go, will I remember to take my insulin, will I eat enough, did my mom calculate the sugars in my meals for the day. It felt as if diabetes and blood-sugar levels were the center of my life. I prayed for a miracle to wake up one day and be healthy and that all this was just a terrible dream. 

Although I was headed towards a hollow place of self pity and loathing, my family and diabetes nurse prevented me from becoming a diabetic grinch. My nurse advocated for me to receive an insulin pump so I no longer had to worry about giving myself the insulin injection. My family started doing daily dinners that were friendly to the diabetic diet for my sake. I don't know if my dad truly enjoyed his meals but the smile on his face during dinner gave me so much comfort and took away some of my anxiety in that moment. 

As I got older, I created a routine for myself that helped me manage my diabetes and live my life. However, a change in life occurred when I started university. I stayed at home and drove to campus daily, I decided not to move cities or provinces for post secondary to maintain my support system. With that, I did not realize that there would be changes. I made new friends and no I did not disclose my health issues to them. I watched my friends eat out carefree and I wanted to fit in so I went out too. I stared at menus and noticed vegan, vegetarian, gluten free options but I had no idea what on the menu was diabetic person friendly. So simply put I ate the tiniest bit of salads while my friends devoured their pizzas or burgers or pastas. I did not want them to know I had diabetes which is why I never bothered to ask about the nutrition values or calculate the carbs in a potential meal. I know to some this may seem so minute, but to me it was a reminder that I am different because of my disease.

Now as an adult (-ish?), I reflect back and realized how much at first I allowed my diagnosis to take over my life. As I grew to understand diabetes I became more in control of my life. How you may ask? Well understanding what is diabetes helped me understand the purpose of my management plan and this definitely reduced my anxiety surrounding my treatment and helped me realize that with good control I have low chance of those scary hospitalizations. I obviously would not be able to achieve this huge milestone without the supports that I have gained during this journey. 

The one main take away I want to get across is that, YOU are in control of your body, you diagnosis or whatever the circumstance. At times you definitely might not feel this to be the case, but with support and change in perspective and a little tweaking of your definition of quality of life, it is possible to regain that control!

Now my diabetes does not control me, I control it!"

                                                                                                    -Anonymous


Resources:

1. https://www.jdrf.ca/

2. https://www.diabetes.ca/about-diabetes/type-1

Tuesday, August 30, 2022

The Difference of Emotions: Our Biases and Depression

Depression is an isolating pain. A pain affecting the soul, a pain that consumes all hope and leaks away pleasure and ambition. Individuals impacted by it have described the experience as: "Most closely connected to drowning or suffocating- but those images are off mark"- Styron and "The word depression is a wimp of a word for such a beastly experience."

First let's define some terms! Emotions are short lived, intense and triggered experiences whereas mood is a global feeling that colours an individual's perception. Mood can influence emotions. It is vital to know that there is a stark difference between a person who is depressed about something and a person who is globally depressed!

So why is it that the word "depression" in mainstream media and common conversation is overused to describe "just feeling low" and what is the harm of this? 

We express our emotions through a wide variety of words. The statement "I am sad" was not an uncommon way to speak about such emotions; but with the evolving years the term "sad", similar to "happy", has begun to lose its true place. It has become a common word, a word that doesn't seem to encompass the entire experience of sadness. And rightfully so, our experiences are all different. But here, we start incorporating stronger phrases, phrases such as "I am depressed". Following the flow of things, it hasn't taken long for the phrase and everything associated with it to become more and more status quo. Feeling depressed is all of a sudden a normal, transient feeling. One that anyone can "get over". This way of thinking is harmful because it washes away the experience of a person feeling truly depressed and invalidates their mental health condition. This stigma hinders the ability to seek help and effectively recover. 

Depression disorders are real, organic conditions of the psyche of a person. There are many things that can hinder with the levels of the neurotransmitter serotonin in the brain. Thus depression mood disorder is beyond the expression of the emotion sadness as a reasonable reaction to an event in life. The inflicted persons are truly in pain and suffering. This is not a mood that one can just "get over". The cause is complex and the path to recovery is not straightforward. If anything, the path is full of painful hurdles that need to be overcome and at any point the person can stagnate or start reverting if not closely monitored.


https://www.boredpanda.com/depression-through-art/?utm_source=google&utm_medium=organic&utm_campaign=organic
Illustration by Robert Carter, depicting what depression feels like. Many patients have described a feeling of entrapment and inability to ignore the internal cues. These internal cues can become so distressing that they become a risk factor for life. 


Depression disorders in medicine are diagnosed using the DSM-V criteria. This criteria tries to capture the experience of depression outside of stressors, substance use and medical conditions. The term used is "Major Depressive Episode" to describe a two week incident of non-stop symptoms and "Major Depressive Disorder"  if continuous episodes and the doctors have ruled out other psychiatric illnesses. So as you can see, there is a process to diagnosing depression disorder. It is not as simple as labeling a low emotion especially one secondary to life stressors as depressed. 

Opening our eyes to our own biases and perspectives is even more important today, where mental health is a true crisis. We can only empathize with individuals struggling with mental health by taking a moment to recognize the importance of individual experiences and stopping ourselves from labeling emotions as "nothing to worry about" or transient. Every emotion matters and being reflective of your own or others' accounts of emotion can truly go a long way in today's day. 

                                                                                        ~ D & R

Thursday, August 18, 2022

Army Activate, the Battle of Allergens: Eosinophilic Esophagitis

This week we bring you a story from another strong and resilient individual. The condition brought to the spotlight is one that is barely covered in medical school lectures, but it has one of the most complex management plans. 

Eosinophilic Esophagitis (EoE) is a chronic inflammatory condition in which the esophagus becomes sensitive to a wide variety of allergens. When in contact with such allergens the eosinophils, a type of white blood cell (the immune system's first-line army), begin to infiltrate the esophagus resulting in an immune response and inflammation. Eosinophils are normally not present in the esophagus so the presence of these cells on endoscopy almost guarantees this diagnosis. When the esophagus is inflamed it is highly irritable and leads to significant narrowing, making it difficult to swallow food, causing reflux, and possibly spreading the irritation to the surrounding structures.  

.......

"I was a picky eater as a child. There seemed to be something about the taste or texture of certain foods that didn't sit quite right with me. It was always the same story. We would sit down for dinner and my mom would be determined to make sure I ate. Being a picky eater was just not an option. Five-year-old me would have never imagined how events would unfold years later. By the time I was in high school, I had lost 60 pounds and could hardly eat a slice of bread without choking on it. They said I had a swollen thyroid and bad gut health, but no one could answer my question; WHY? I thought perhaps I was sensitive to certain foods and slowly home cooked meals became my go-to. 

But things were in for another twist. Moving away for university brought with it many challenges, including more cafeteria food and less home food. The processed foods and cross-contamination of ingredients took a toll on me every time. I found myself drifting to coffee, salads, or unhealthy alternatives for comfort. And once again, I was searching for a reason for my symptoms. Could it be the braces this time?

Not too long after, I had my first episode of vomiting, hyperventilating, and passing out. And after that, the trips to the ER became regular. It was becoming difficult to explain the situation to my family without worrying them. I continued to try to find answers, and while there were many answers I didn't know which one was correct. Was it allergies, was it the stress of being a student (a diagnosis I was usually given in the ER), or something else?

I am thankful for my family doctor who got the ball rolling by ordering my first endoscopy. The procedure was unexpectedly awful. Both the adult and pediatric endoscopes were unable to go down my inflamed esophagus, an otherwise highly unlikely complication. From what was visible, they told me I had close to 200 eosinophils in my esophagus. Thus the diagnosis was made, eosinophilic esophagitis, a diagnosis that is rarely seen in my age group. Endoscopies became more frequent, I was given medications with several side effects, and I started an elimination diet with not much relief of symptoms. Allergy tests indicated that I had allergies to a lot of environmental agents, but often these tests can be indeterminant for many with EOE. And so, I was let go without further follow-up and referred to an allergist. 

Several months in with recurrent symptoms, I came across a research article by a professor at my university. She advocated for me to receive an endoscopy to confirm the diagnosis for targeted management. If I had not seen her that day my esophagus would have been so swollen I would have needed an NG tube. The very thought of being unable to eat was terrifying. I was started on esophageal dilatations every 8 weeks with the goal of bringing my esophagus from 5mm to 15-20mm. My roommate became a big part of my recovery during a mentally tasking 1.5 years of dilatation procedures. 

Two weeks ago I swallowed a pill for the first time in 8 years. I CRIED. The idea of swallowing something without having to chew it and not having reflux was life-changing. It may be a little thing for others, but for me, this was the biggest accomplishment and a much-needed reassurance. 

Being followed by the doctor I have now, who does research on EOE, was a boon. You can see when someone has a passion for something and hers was to help people not just by managing symptoms but by stopping them altogether. I have never had a doctor meet me after every procedure and explain how the events unfolded. She took what I wanted to do in life, where I was living, and made it all work miraculously. 

Since my diagnosis, I have seen the support of my family, friends, and physicians grow. I have been able to join focus groups and read up on EOE to be my own health advocate. It means the world to me to have such supportive and understanding people who have been there through each stage of this journey. I am proud of myself for surpassing the mental challenges that I constantly encountered over the last few years. It was not an easy or predictable journey, and neither will it be going forward, but I feel strong knowing how I had risen above the challenges and knowing that I am surrounded by so many people who care."

.......

                                                                                    - Anonymous

Wednesday, August 10, 2022

The Circuit of Strength

Invincibleweare


When we take a look around everything seems to work in networks, in groups, in pairs. The light bulb has a long circuit behind its brightness. The trees have many roots that help nourish and keep the trunk standing strong. Similarly in humans, nothing strengthens us more than the presence of supportive loved and cherished people. As a human with a search for social interaction, this network can be an asset and the pillar for strength at times of need. 

Living with chronic illness is difficult, especially because there is rarely an end in sight. The diagnosis is usually something that must be lived with and "endured". Now in such a situation you can endure it with pain and torment or take the wheel and guide yourself to a path that you would like to see yourself on. Here we talk about some methods in developing a "circuit of strength" that have shown to be helpful. 

Disclaimer: the advice provided here is not a replacement for professional help/ advice from physicians, nurses, counsellors or allied health care providers.  


Engaged coping: Building your team!

Erin Skinner, a psychologist from the USA defines coping as a collection of purposeful, volitional efforts that are directed at the regulation of aspects of the self and the environment under stress" (1). In simple terms, coping is how an individual reacts to stress. There are both good and bad coping habits. We will focus on the good coping method of seeking help and taking lead of your health. Countless research articles and even personal experiences have shown time and again  the importance of a support system in dealing with stressors. If anything research has shown that disengaging or passive coping (i.e. avoiding or denying the stressors) leads to poor outcomes (2). 

This entails:
Reaching out to family or friends that you trust. For example, with a diagnosis of diabetes including family and friends may help with controlling diet and improving exercise to manage blood sugar levels. Why walk the path alone, when there is someone willing to walk it with you in a supportive way!!
Creating dialogue with your doctors to lay out expectations and hopes. This way realistic goals can be set and placement of a safety net accomplished. The latter will create a better watch on medications and changes to health.  This is an example of where being proactive is better than reactive!

Vulnerability and determining the nature of stressors

Chronic illness presents a wide array of threats and emotional demand. So a key step is to determine what stressors are present and of them which are the most distressing (3). This can help specialists such as counsellors create a specific plan to address these stressors. Remember stressors can be from physical symptoms of diagnosis but also the emotional aspect of prognosis, how to fit in society with an illness and fear of recurrence. Here vulnerability is not synonymous with "weakness" but rather a state of openness to our illness/situation such that ability is formed to accept help!

Invest in yourself!

A significant part of managing most chronic illness involves lifestyle and behavior changes in diet, exercise, sleep and mindfulness (4). At times these modifications can feel taxing, but investing this time for your holistic wellbeing will help you gain the sense you are in control and reduce anxiety. The time spent on yourself will also improve physical well being. This large payout of improved quality of life is worth the time and energy!


These are just a few ways to help create a well tuned circuit of support and thus strength in facing chronic illness. 

***Feel free to share methods that have worked for you in the comments!***

💮💮💮💮💮💮💮💮💮💮

For all those families, friends, colleagues, and mentors who have stood by us with a supportive shoulder; We cannot thank you enough for your contributions that  turned a negative thought process into a positive one. In reflecting on our experiences, we wanted to share a poem dedicated to all the people that play a supportive role:

Far too many times I have felt alone
But you have been there for me
Far too many times I stood below
But you pulled me up from within

Never too far, never too slow
A network is what you have been
A network of strength, courage, and joy
One that brings a new perspective in

Alone I am not, for this network I have
Nothing can take it away
The strength, courage, joy, and love
I hope to share with another one day
-DB




                                                                                                            -InvincibleWeAre

References:
1. Skinner EA, Zimmer-Gembeck MJ. The development of coping. Annu Rev Psychol.
    2007;58:119-44. doi: 10.1146/annurev.psych.58.110405.085705. PMID: 16903804.
2. Compas BE, Jaser SS, Dunn MJ, Rodriguez EM. Coping with chronic illness in
    childhood and adolescence. Annu Rev Clin Psychol. 2012;8:455-80. doi:
    10.1146/annurev-clinpsy-032511-143108. Epub 2011 Dec 20. PMID: 22224836;
    PMCID: PMC3319320.
3. Tobin, D.L., Holroyd, K.A., Reynolds, R.V. et al. The hierarchical factor structure of the
    coping strategies inventory. Cogn Ther Res 13, 343–361 (1989).
    https://doi.org/10.1007/BF01173478
4. https://www.health.harvard.edu/staying-healthy/10-steps-for-coping-with-a-chronic
    condition

Tuesday, August 2, 2022

Bardet Biedl Syndrome, I don't think you have heard of me: Rare genetic disorders


In the 1920s, most of UK was recovering from the World War I but two doctors were occupied studying two families with unique features and persisting obesity. Those doctors were Bardet and Beidl. They noted that these two respective families had members with obesity, polydactyly (more than 5 digits per hand or feet), and retinitis pigmentosa (this isn't a spell but rather an unfortunate cluster of processes that lead to loss of the cells that "see" light and color and thus lead to vision loss slowly). 

.......
"I am grateful for this opportunity to voice my experience as a person with Bardet Biedl syndrome. Let me start from the beginning. My parents were new immigrants to Canada when they were expecting me. I have heard from my parents and siblings how doctors would say "I'm sorry your baby has a genetic disorder" or "Your child will not live to see past the age of 16 years." At some point I am sure my family felt hopeless especially when they saw their 6 year old child unable to speak or walk and by this age having already experienced numerous seizures and countless hospitalizations.  

To my geneticist, I was a child born with a ciliopathic rare genetic disorder and all they could offer were stats and reassurance. My presentation was so rare that even resources were scarce. However, from the support I got from my school teachers, language and speech specialist, neurologist, plastic surgeon and pediatrician, I felt invincible! Living in the amazing country that Canada is, I was provided with "shields" to protect me and help me face the world. 

Today, I am in a life skills program at high school and I have lived past the expiration date of 16 years that the doctors recited. I am able to do most normal functions even though it took me a lot longer to gain those skills. I do have the unfortunate barrier of "night blindness" and living in a province where it gets dark after 5pm for 6-7 months this can be challenging. Sometimes I do get sad seeing my siblings and peers getting drivers licenses and I am not allowed to drive. However, the Canadian Blind Society not only took me for training session but also equipped me with the resources I need when out after dark. 

I love mountains. Usually I feel like a mountain, standing strong against the violent of winds. Of course mountains signify the ups and downs that everyone faces in their lives!

I have felt alone, I have felt scared and I have in painful tears asked my creator why he made me like this. Honestly, it is hard but I have come to terms with my disease and I know I am unique. I bring a perspective to this fast paced world that we all fit in and life isn't a race. I am not broken nor am I last. 
Reflecting back on my life, my sister thought of a poem that I wanted to share with you.


I am rare, not less.
I stand out from the crowd,
Sometimes it hurts when people stare, I must confess

I shine through the layers of struggle even if it appears like a mess
It's a lonely journey but I am proud
Proud that I created an address.

An identity of being rare, resilient and no less
I am grateful for this life and I say this loud,
I am rare, not less. 

I am hopeful this short read was informative and hope you learned something new about a rare genetic disorder that has no cure or treatment. If you would like to learn more about Bardet Biedl and rare genetic disorders, please see the links below."
.......

Helpful Resources From the Anonymous StoryTeller: 
https://www.frontiersin.org/articles/10.3389/fped.2018.00023/full

https://rarediseases.org/for-patients-and-families/information-resources/rare-disease-information/


                                                                                              - Anonymous

Tuesday, July 26, 2022

No Stone Too Tough, No Mind Too Weak: Gallbladder Disease


You may or may not have come across the topic of gallstones online, in conversations, or through personal experience. Before we share another personal story let us tell you a little about gallbladder disease. 

Background on Gallbladder diseases: Place your hand on the right side of your abdomen above your last few ribs. Your gallbladder, a small pear shaped organ in close proximity to the liver, lives just underneath where the palm of your hand is positioned. The gallbladder is responsible for storing and releasing stored bile salts every time you eat a meal with fats. This means everything from french fries, to eggs, to cheese, to lentils, will get the gallbladder working to different extents. Gallbladder disease encompasses a wide variety of conditions related to the gallbladder including biliary colic and acute cholecystitis. Often the villian in such conditions is a stone, also known as a gallstone, that blocks the passage of contents out of the gallbladder. In such situations, the blocked gallbladder is contracting but unable to empty itself, leading to inflammation and scarring. Symptoms of an acute cholecystitis often result in sudden and ongoing pain mainly on the right side of the abdomen, with more pain when palpated. Nausea, vomiting, and abdominal discomfort can also be accompanying symptoms, among many others. Many people, including yourself, may currently have a gallstone, but while many do not even noticed the presence of their stone, in a few individuals this stone can cause frequent and severe symptoms and pain.  

"Symptoms creeped up on me like an uninvited guest. Nausea, vomiting, intense abdominal and epigastric pain. In fall of 2020, I had my first gallbladder attack, not knowing what it was at that time. It started in the evening and lasted until early next morning. I laid there in bed, holding my body in a tight ball, crying, fearing that I was perhaps having a heart attack. It's a tendency to think the worst when you don't have answers, right? Since then, every second or third night the symptoms would return. I was frightened to think that something could be wrong with me. 

Several months and several doctor appointments later, I was still being prescribed medications for gastric reflux and anti-spasmodics. I am no advocate of doctor shopping, but I was fortunate to have two separate family physicians from different provinces (one from my permanent residence and the other a temporary one during school). It took almost 13 months for an ultrasound to be ordered to investigate my symptoms. It always shocks me how several failed medications and months later, gastric reflux continued to be the top cause of concern. It was as if no one was listening to my story and blaming my symptoms merely on my diet and hormones. I couldn't be more grateful to my current family doctor who offered me the space to speak about my symptoms and to offer my opinions on the diagnosis from what I had researched. I believe that as a patient we must do our research and be in charge of our health and offer this insight to a knowledgable physician who can direct our thoughts towards an appropriate diagnosis.

I had learnt about gallstones at that time. In the books, it looked like a "not too bad" disease. A small stone can't do much after all right? I was sure I did not have gallstones but something worse. I definitely had underestimated the condition based on the words. 

I had my first ultrasound in November 2021, a positive scan for acute cholecystitis. I was having another gallbladder attack but a milder one this time. "Go to emergency if it gets worse" they told me. You hear the word 'emergency' and suddenly there is a gush of adrenaline. "Is this really that bad, what is going to happen?". Going from thinking of a gallstone as 'nothing to worry about' to this, felt like one big punch. And indeed, a few days later I went to emergency, having a gallbladder attack. As I sat there on the triage bed I was tearing up. The nurse came to ask me about my pain. Seeing me teary she asked if the pain was really bad, and yes it was a 9/10, but the tears were of fear. I was extremely terrified where the day would lead me. 'Is today going to be the day for the surgery?'

Now, 9 months after my diagnosis, I have been offered surgery for gallbladder removal (the fear kicks in again and being alone in the city doesn't help decrease the nerves to take up that surgical option). Luckily my surgeon is phenomenal and has been very accepting of my wish to control my symptoms non-invasively until the need arises to do otherwise. I feel proud looking at how far I have come on this journey from daily nausea, vomiting, and intense pain all night, to more infrequent episodes. 

There are days when I would rapidly search for an answer so I could point to the one mistake I made that led to this condition. I was looking to blame myself, when in fact there may be nothing to blame at all. I thought disease meant you did something wrong, but disease is just another one of destiny's obstacles to test your strength.

My experience with gallbladder disease has taught me a few very important lessons. This would differ between people, but most importantly dietary adjustments has been a big part for me since my diagnosis. It took 3 months for me to test foods and suffer through gallbladder attacks in order to realize my trigger foods. I still love a good slice of cheesy pizza, but realizing when I can eat it and when it may be a trigger requires weeks of self-reflection. Physical and mental health have also been a priority for me. Believe it or not, a good 1 hour workout and a 30 minute meditation has gone a long way in decreasing my symptoms but also making me stronger. Cortisol, the stress hormone, can really add gas to the fire, so there could be nothing better than making meditation my best friend. Recently, I have had immense success with medicinal amounts of turmeric. I do caution that it could increase your symptoms, but for me it has really helped reduce the underlying abdominal discomfort that is caused by the inflammation. Above all, good family support has helped me get through all these months since the first symptoms.

The biggest thing to remember is to not give up. Change takes time, whether that is your nutritional habits or incorporating physical and mental health into your daily routine. Do your research because nothing is better than being in charge of your own health, and seeking advice from a medical professional can only make your efforts from fruitful. 

I continue to infrequently have gallbladder attacks, but with a stronger mind and dedicated reflections for future change I have passed each attack with ease. Not a person on the street could know that I had a gallbladder attack last night, because I have learnt to live with it like everyone else."


                                                                                        - Anonymous

Wednesday, July 20, 2022

Only I can knock myself down: Autoimmune Disease

Before sharing one individual's experience of living with Graves' disease we wanted to share a little bit about what it is. 

Background on Graves' Disease: The thyroid is an organ located in the neck just in front of the trachea. This butterfly looking organ is important for carrying out basically every bodily function. The brain releases a hormone called TSH which is essentially a key that will bind to the thyroid receptors and activate it to secrete the thyroid hormones.  In Graves' disease the body makes antibodies specifically against the thyroid receptor. When the antibody binds to the receptor, it activates it. WHOOOPSIES looks like more than one key can open this lock! This activation is quite dangerous as it increases thyroid hormones and leads to increase in heart rate, metabolism, break down of muscle, increases bowel movements, changes mood, creates a heat intolerance and skin and hair changes just to name a few things. 

"Hey there immune system, I think you forgot that the butterfly looking organ in the neck is apart of us, please stop making antibodies against it. 

In 2016, I noticed a change in my energy and felt clothes were getting looser. At first I welcomed the weight loss but within a few months I had lost fifty pounds and became extremely fatigued and had barely any muscle strength. Frequently vomiting, numerous runs to the washroom, and feeling excessively hot in the cold weather was a daily experience. Eventually I received my diagnosis and I definitely felt this was fake news. How could I be sick. 

These past few years have been like a never ending rollercoaster ride that you cant seem to get off of. There are brief moments were I feel great and "normal" but just around a corner is another uphill battle waiting. For example, two years ago when I started medical school I had a week where I felt great and was able to keep on top of my academics and family life. Sadly without a warning, I hit a horrible patch of low energy, low mood, anxiety, and feeling a burning sensation. During this time I was unable to study or be there for the people that matter to me the most. I felt like I was letting everyone down and that perhaps I am a burden on everyone and the health care system. I think I can narrow down my problem to the uncertainty this disease caused in my life. I felt as if I was no longer in control of my body. 

Being in the health care system and ill is a unique experience. I remember learning about Grave's disease and noticed how everyone around me would say "oh thats a very common disease" or "not a big deal, this is seen in many women". These phrases created an isolating barrier for me to reach out for help. 

So how did I finally learn to live with Graves' disease? Well first of all I needed a change in perspective. I needed to understand that I am not diseased, I am facing a change in my baseline health. To bring myself back to baseline I motivated myself to exercise to regain muscle and maintain my weight in a healthy manner. With exercising and finding opportunities to relax I found that I had more control over my body and was able to have more good days then not. 
        I stand in front of my uncertainties and illness related anxieties, ready to face and conquer them.

The battle is not yet over. Even though my lab values and lack of symptoms show I am in remission, I do have a creeping thought once in awhile that the illness will come back. But this time I will be prepared. 

My advice for anyone experiencing something similar, be true to yourself and figure out what things you can control and focus on that."

                                                                                                                  -Anonymous.


Tuesday, July 12, 2022

Mission Invincible: The Backstory

If you are wondering WHO? or WHY?, you've reached the right post! Read on for a glimpse of who we are and why this blog was started. 

So who are we? Well quite simply, two young women faced with unique challenges of living with medical conditions. We are Canadian medical students and aspiring physicians who have been through the storm ourselves. That's right, we wake up and overcome the heavy winds of our diagnoses everyday. Our aim is to be a channel for voices of the people who with great resiliency face their battles in silence.

Starting our medical journey, we realized that the diagnosis we live with looked very different from the other side of the clinic room. The medical side provides context of the disease but skims the illness experience of the potentially mortified patient. Above all the pure disease approach lacks the depth to understand the changes and uncertainty that faces the person as a consequence of the medical diagnosis. 

During clinical experiences, we found ourselves underestimating a patient's pain. For example if a patient rated their pain as  9/10, we would underestimated it to 4/10 since the patient "appears well and not distressed". Being on the receiving side was a wake up call and reminder that  9/10 equals 9/10, and 9/10 also equals moments of helplessness and fear, moments of guilt, times of uncertainty and denial. Overcoming the initial shell shock, we realized that it is not truly surprising that we underestimate lived experiences. If we have never walked a mile in the shoes of the person across us how can we comprehend what they are experiencing. 

We believe that amplifying the voices of the people with medical conditions can reduce the ostracizing emotions of receiving and living with a medical illness and can be a resource of strength and inspiration for those that continue to fight. Importantly, it can help ignite empathy through sharing lived experiences. 

Invincible We Are is a platform where we wish to weave together our love for writing, our medical knowledge, and the lived experiences to put forth a person-centered-approach to medical conditions. This is a place where stories of resilience with medical diagnoses will be shared in a safe and positive manner. We want this page to be for you, for us, for everyone; to deepen our understanding that we all are courageous. By understanding differences in human experience we can undoubtedly increase our empathy and acceptance of those around us. 

We hope you look forward to each new post, each new story, and each new perspective. Each post will be full of new learning from an educational standpoint and descriptive views into the experiences of those living with medical diagnoses. 

Please utilize the following link if you would like to share your story. The story will be posted anonymously. 

https://forms.gle/MfzE3jjqFRyKM6Pv7


                                                We look forward to creating a positive sharing space for all of us  - D&R.


Tuesday, July 5, 2022

More than Hulk, we are invincible


Invincible, a word that is heavier than it seems. 

Google defines it as being “too powerful to be defeated or overcome”. I wonder what it takes to be so powerful that everything seems little in comparison. 

Unshaken is my definition. Being invincible is like knowing the storm exists but to not get swayed in the wind. The power to do which comes from within. We all have this invincible power to stand against the worst of odds. 

I live with a medical diagnosis, but I LIVE. I live like the girl next door or the colleague at work. I live on, facing and conquering the storm that my diagnosis brings. Many of those around me have also been through the doctor’s spiel. “Unfortunately you have this, which means you will have to do this, and we can help you with this. Have you been through this? Going through thousands of google searches to find a reason for the diagnosis or a way to easily deal with it every day. I too went through hours of googling anxiously.  But this is why we are invincible. We LIVE, we live on past the moment that shook the ground we stand on, but we still LIVE. We still continue to love ourselves, our lives and those in it. We live on and we love on. 

I thought being invincible meant never having to visit a doctor, to have the perfect health, to have no medical diagnoses. But invincible is the resilience in the face of a diagnosis, the ability to live a good quality life and prosper in a world where a medical history can prove to be stigmatizing.

We are invincible, our hurdles are hidden behind the curtains, our resilience largely unknown. We are invincible and we open our curtains to make it known that our medical diagnoses makes us stronger and healthier. We are invincible. 

                                                                                -DR

Schmidt Syndrome: An Uphill Battle Against Myself

I was maybe 18 years old when my mom passed away. She would often complain of being tired and say she is tanning by sitting indoors. This wa...