Finding My Path From Patient To Caregiver

Finding My Path From Patient To Caregiver

A fight for a dream to care for others.
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From the first day I entered preschool, I was met with the question, what do you want to be when you grow up?” As my understanding of the question grew, my answers matured, and it became more and more frightening to answer the question I had been asked. I’m sure I first started off as a princess, who then matured to an artist, then a dancer, then a teacher, then a psychiatrist — but by the time high school came rolling around, I was sure of what I wanted to be, and I would never have guessed it for myself.

I began getting sick during the time that the question of what I wanted to be when I grew up started to become a more serious conversation, as I was only a few years away from high school — and after high school comes college and after college comes… life. Though instead of exploring all of my opportunities and interests, my life took a drastic turn. I went from dreaming of making dance a career to trying to balance dance and a wide range of confusing, painful and undiagnosed symptoms.

The symptoms came quicker than the diagnoses, and the diagnoses often came without a treatment. Doctors were confused, but they tried — a scan here, a test there, eventually a surgery, and then came the long list of syndromes and disorders and diseases my body was riddled with. Before I got sick, and even through the first year, I was the child you heard screaming down the hallway because they came to take blood, start an IV, or give an injection. I was that kid the nurses closed all the doors for, but eventually, I grew to love those people. As the years passed and I struggled to balance being a competitive dancer and a full-time chronically ill, undiagnosed young lady, my values, my priorities and my career choices changed. I went from wanting to be a dancer to then wanting to be a child life specialist at the Hospital for Sick Children (SickKids) in Toronto, to finally deciding I wanted to be a pediatric oncology nurse at SickKids. I grew up in this hospital, and it is lovingly dubbed “SickKids” — not to disempower or promote pity, but quite honestly just because it’s a lot easier to say! Go figure — the kid who wouldn’t be caught near anyone holding a needle, dreaming to be the one on the other side. It may sound a bit silly, but when you’re a patient in that hospital, or in any children’s hospital for that matter, you learn it can be a different kind of bond.

I will never forget all of the days and nights I had with my nurses who helped everything make sense. The way I watched them care for fellow patients, the way fellow patients would come up to the ward specifically seeking them and the smiles that would follow. I never forgot the feeling of seeing my favorite nurse walk in at the beginning of shift change, knowing I had 12 hours of being cared for by someone I that I trusted as my as my own mother. My nurses were my superheroes. They make long painful days durable, they made cravings for banana popsicles a reality (even if they had to take them from other units), they made scary procedures less overwhelming, and they filled sleepless, anxious nights with comforting words, songs, and back rubs. To me, there was nothing my nurse couldn't do, fix, or make happen--and I could not wait for the day that I could give to a patient what my nurses had given to me.

That was 10 years ago, and a lot has changed in those 10 years. I’ve gained a lot more understanding about my illnesses. Unfortunately, that understanding came with a lot more diagnoses and surgeries and pain. However, one thing remained the same — I wanted to be a nurse. I still want to be a nurse. I just turned 22 at the beginning of October, and to say it bluntly, 21 was not a kind year to me. I endured more pain and struggle than I would wish upon my worst enemy. At 22, I should have been beginning my first year of work as a nurse, but instead, I have three failed attempts behind me and a body that is as unstable as ever. For the first time in this journey, I had doctors, peers and even someone I looked up to turn to me and say, “Honey, you can’t be a nurse. You need a nurse.” I’ve been told I should consider my career path, that there was no possible way I could last 12 hours on my feet if I could barely stay awake for six hours as it is. I don’t know if there is a way to adequately describe how it feels to hear someone doubt you and your dreams, but I’m sure it is amongst the 10 most heartbreaking scenarios in the book of life.

Over the last few months, I have been trying to come to face and accept the fact that maybe my dream is just that, a dream. Maybe it is too farfetched and unrealistic. Maybe I can’t be what I need. So I ran lists through my head. I did those career path predicting quizzes online, and then something happened that finally made me understand it all, and it helped me understand where I needed to be.

This past October, my youngest sister had to have her appendix taken out. My heart stopped as it always does when someone I love is enduring any pain I feel or have felt. I wanted to rush over to the hospital to be there with her for her 2 a.m. surgery, but my mom convinced me to stay home as I had an interview early the next morning to raise awareness for one of the illnesses I fight. I spent that night crying and praying for the text message that told me she came out of surgery and all went well. Thankfully, it did. My tiny, precious little pain in the butt of a sister came through with flying colors, but definitely not without a little soreness. I went to visit her the next day, and she asked me a million questions about her incisions, the bubbles in her IV line, the tape she was covered in, the fluid running through her IV. She asked me every question I once asked my nurse after my appendectomy. She asked me to help her re-tape her IV as it was taped in an uncomfortable spot, but she was mortified at the pain of the tape coming off of the hair on her skin, so I went on a search for some adhesive remover and spend the next half hour talking her through it and removing the tape that was bugging her. When she came home, I spent the next few days keeping on top of her pain medication, making sure she was comfortable, making sure she rested and she drank. She became my little patient, and even though I wish she wasn’t, I was so happy I could finally be her big sister. As the eldest in my family and the only one with chronic illness, my little sisters often end up caring for me and to finally care for her as her big sister brought me to tears, and it reaffirmed that I always want to be her big sister.

Taking care of my sweet little sister confirmed for me I am on the path I need to be. Whether it takes me four years or six, nursing is where I am meant to be. Caring for another little one through their pain and fear is where I need to be. Rubbing my patient’s back and comforting them through tears is where I need to be. Delivering medications that ease the yuckiness is where I need to be. Being a nurse is what I need to be, and there is no medical professional or being on this earth that could convince me otherwise.

I live and advocate with the mindset that in this day and age there is no such thing as limitations, there should be no such thing as limitations. So long as I can love and care for my patients to the extent of my desire to do so, I know I am where I’m meant to be. My disorders are just that, they are mine, and I am only limited by the boundaries I allow myself to be limited by. I believe there is no disability or disease that can affect our ability to love one another. I spent the better part of this last year questioning my place on this earth and my purpose, as I had convinced myself my purpose was to be a nurse, and I considered myself a failure because I wasn’t there when all of my peers were. However, it was during this time of doubt I realized just how blessed I am. How blessed I am to be cared for by nurses who have fought just as hard as I will to care for their patients, blessed that time is an endless concept and school will always be there, blessed that science will continue to evolve, blessed that there will always be something new to learn, and blessed that there will always be a heart for me to love and a body for me to heal.

As patients, we can spend so much time contemplating what our role is while everyone around us works so hard to pick up where we leave off, and we can tend to forget how important we are in inspiring our caregivers to do better and to be better. We are providing hope and knowledge to the medical field about the rare conditions we face, and the potential that exists to live with them. Most importantly, we’re keeping a special kind of love and desire circulating in this world — a reckless, fearless, completely raw and genuine love that I believe can heal any ailment. So yes, I will admit sometimes I grow upset and frustrated that I’m not in the workforce yet and am instead on the other side of the spectrum, but from this day forward I will make sure to live by the words of Vincent van Gogh: “Your profession is not what brings home your weekly paycheck. Your profession is what you’re put here on earth to do, with such passion and such intensity that it becomes spiritual in calling.” With that, I know my doubts will be drowned out by my dreams, and my dreams will take flight by the passion I possess.

Cover Image Credit: Kaptest iStock

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30 Things I'd Rather Be Than 'Pretty'

Because "pretty" is so overrated.
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Nowadays, we put so much emphasis on our looks. We focus so much on the outside that we forget to really focus on what matters. I was inspired by a list that I found online of "Things I Would Rather Be Called Instead Of Pretty," so I made my own version. Here is a list of things that I would rather be than "pretty."

1. Captivating

I want one glance at me to completely steal your breath away.

2. Magnetic

I want people to feel drawn to me. I want something to be different about me that people recognize at first glance.

3. Raw

I want to be real. Vulnerable. Completely, genuinely myself.

4. Intoxicating

..and I want you addicted.

5. Humble

I want to recognize my abilities, but not be boastful or proud.

6. Exemplary

I want to stand out.

7. Loyal

I want to pride myself on sticking out the storm.

8. Fascinating

I want you to be hanging on every word I say.

9. Empathetic

I want to be able to feel your pain, so that I can help you heal.

10. Vivacious

I want to be the life of the party.

11. Reckless

I want to be crazy. Thrilling. Unpredictable. I want to keep you guessing, keep your heart pounding, and your blood rushing.

12. Philanthropic

I want to give.

13. Philosophical

I want to ask the tough questions that get you thinking about the purpose of our beating hearts.

14. Loving

When my name is spoken, I want my tenderness to come to mind.

15. Quaintrelle

I want my passion to ooze out of me.

16. Belesprit

I want to be quick. Witty. Always on my toes.

17. Conscientious

I want to always be thinking of others.

18. Passionate

...and I want people to know what my passions are.

19. Alluring

I want to be a woman who draws people in.

20. Kind

Simply put, I want to be pleasant and kind.

21. Selcouth

Even if you've known me your whole life, I want strange, yet marvelous. Rare and wondrous.

22. Pierian

From the way I move to the way I speak, I want to be poetic.

23. Esoteric

Do not mistake this. I do not want to be misunderstood. But rather I'd like to keep my circle small and close. I don't want to be an average, everyday person.

24. Authentic

I don't want anyone to ever question whether I am being genuine or telling the truth.

25. Novaturient

..about my own life. I never want to settle for good enough. Instead I always want to seek to make a positive change.

26. Observant

I want to take all of life in.

27. Peart

I want to be honestly in good spirits at all times.

28. Romantic

Sure, I want to be a little old school in this sense.

29. Elysian

I want to give you the same feeling that you get in paradise.

30. Curious

And I never want to stop searching for answers.
Cover Image Credit: Favim

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Stop Saying, 'I Don’t Want To Get Diabetes,’ It's Rude And Ignorant To Those Who Are Type 1 Diabetic

Nobody wants to "get" diabetes, but some of us have no choice.

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This statement implies that is is a choice to be diagnosed with diabetes as if it is some very controllable condition where I have the ability to decide whether it affects me or not. This is not true.

When I was three years old, I was diagnosed with type 1 diabetes also known as juvenile diabetes because it typically, but is not limited to, beginning in adolescence. Type 1 diabetes is a chronic condition where my pancreas no longer produces insulin. This is caused by my immune system attacking the pancreas, ultimately destroying the cells that create insulin. As of right now, there is no explanation known for what ultimately makes the immune system do this, and there is no cure for the autoimmune condition.

Thus, as a type 1 diabetic, I have no choice but to be entirely insulin dependent. Whenever I consume carbohydrates, I must administer insulin to my bloodstream just like how non-diabetic people having a fully functioning pancreas that releases the same hormone whenever they introduce carbohydrates to their digestive systems. The amount of insulin that I administer is based on the number of carbs that I consume; the carbs per insulin unit ratio varies based on the individual and also has the potential to change just as how the pancreas secrets insulin within an individual's body at rates that are unknown. Therefore, finding ways to treat diabetes can be difficult for there lacks a "one size fits all" template for what works best for each diabetic. (This is important to keep in mind for all health conditions: what works well for one person does not necessarily mean that it will work well for a different person.)

There are a lot of other factors that are imperative for my mindful attention in order to stay healthy with this chronic condition. Monitoring blood sugar levels, counting carbohydrates, gaining a true sense of body awareness, and attending doctors appointments are some examples of these other factors that are necessary to keep on top of while living with type 1 diabetes. As you can tell, this chronic condition can easily become overwhelming.

Did I want to be diagnosed with type 1 diabetes? No.

Did I have a choice as to whether I was diagnosed with type 1 diabetes? No.

Do you have the ability to control what statements you make when speaking in public? Yes, you most certainly do.

I urge people to resist from saying the phrase, "I don't want to get diabetes" when offered dessert or saying something similar when asked why they are cutting back on how much sugar they include in their diet. Perhaps these comments are in reference to "getting" type 2 diabetes also known as adult-onset diabetes. This condition is different from type 1 diabetes in the sense that the pancreas does not produce enough insulin or the body has developed a resistance to the insulin that is produced; the body does not use insulin efficiently. Another difference is that type 2 diabetes can be influenced by the risk factors of obesity and family history. Finally, type 2 diabetes can also be reversed; this means that through lifestyle choices such as diet and exercise, the effects of type 2 diabetes can be alleviated because the pancreas still does make insulin for type 2 diabetics. This is not the case for type 1 diabetes, thus, these are two different conditions.

So let's say that the ignorant comment of "I don't want to get diabetes" is made in reference to type 2 diabetes. This is still an awful thing to say. Of course, nobody "wants to get" diabetes; why would they? However, even in cases of type 2 diabetes, there are factors that are still beyond the individual's personal control, and even after the diagnosis occurs, as I stated earlier, there are differences in how each individual responds to treatment options. What works for one may not work for another.

Unfortunately, I have been in the presence of people who have made comments within this subject matter. Being a type 1 diabetic myself, the situation is incredibly awkward. Whether the person who made the statement knows that there is a diabetic present in the room or not, they should not be speaking like this. Making this comment implies that there is a concrete choice as to whether an individual is diagnosed with diabetes, of any type, or not. Making this comment implies that you, the commentator, is above those of us who are already diabetic; you are looking down on us in a way because your comment insinuates that you would never want to endure the lifestyle of a diabetic. Making this comment implies that you, the commenter, have no idea what the differences between type 1 and type 2 diabetes are, or that there even are different types of diabetes and how to distinguish between the complications of each. Making this comment implies that you, the commenter, are extremely, unmistakenly, ignorant.

In the instances that I have heard this quick comment be made, some people present in the room knew that I was type 1 diabetic and some people did not. Nobody pointed me out or made sideways glances at me to notice my facial expression. I was not offended by the comment, nor was I embarrassed that I am type 1 diabetic while there is this person saying that they "don't want" what I have. I was, however, extremely disappointed in the comment. I was partly disappointed in the commenter for making such an ignorant statement (that I am sure was probably not meant to be harmful at all), but I was also majorly disappointed in society as a whole. Instances like this have made me realize that, collectively, society is also ignorant of the differences between types of diabetes. Generalizing this condition can result in the cultivation of uncomfortable situations and an inability to understand the complications of each type of this condition.

Finally, and most importantly, whenever I endure experiences such as the one described, I am refreshed of just how utterly important it is for all of us to choose our words wisely and precisely. Even if we do not intend to cause harm by our words, the possibility of that happening is always present. When people say "I don't want to get diabetes," I am not sure they realize just how terrible this statement sounds leaving their lips. In my mind, my first reaction is that I would never say anything like this, but then again, I have this reaction because I am type 1 diabetic. Similarly, would you ever make the statement "I don't want to get cancer" when offered a free session in a tanning bed or "I don't want to get liver damage" when offered a beer? No, because there are so many genetic and epigenetic factors that can contribute to cancer diagnoses and the same goes for liver failure.

It sounds absurd to even read those two examples. How can somebody solely correlate tanning beds with "getting" cancer and beer with "getting" liver damage when there is an abundance of other contributing factors as well as different types of levels of severity regarding these health issues? Well, I ask myself the same question regarding the statement of "I don't want to get diabetes" when somebody is offered something sweet. How can somebody solely correlate sugar with "getting" diabetes when there are so many other factors that are potentially involved? While it is possible that these pairs are related in terms of causation to some extent (tanning beds/cancer, beer/liver damage, sugar/diabetes) there are so many things that we do not know exactly and making generalized statements like my examples above prove to be inappropriate.

It sounds absurd because it is absurd.

Thus, let's all strive to create an environment where we do not make people feel ashamed or uncomfortable based on ignorant statements regarding health conditions that we may or may not know anything about. You never know what people are going through or how a genetic condition, health issue, or disease affects them. Furthermore, you never know what health experiences you will one day be exposed to, whether that condition will affect you personally or if it will affect a close family member or friend. Either way, it will change your perspective immensely.

I vow to always choose my words carefully and thoughtfully to ensure that I can clearly articulate a point with consideration for whoever is present in my audience; you should too.

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