Navigating Healthcare for Us


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Have you ever felt lost in the world of healthcare like you are going in circles.? A voice unheard? Drowning, suffocating, going round and round, not knowing where to start. That was me, that was my mother. I learned at a young age how to navigate the emergency. I wasn’t really paying attention when I was sick and young. I went to Mayo clinic when I was 16.  My mother tried hard to diagnose me before she died. When she turned 45, she was diagnosed with cancer. It was my turn to flip it around and navigate the emergency room for her, the lab department, the hospice care, so many different departments. To learn the lingo, medical terminology. You don’t actually appreciate how much you learn until after—even planning a funeral at age 20. I look back now as a parent; it was education for me.

My kids were diagnosed with blood disorders, and at the same time, so was I. Let me tell you I had to learn how to navigate the world of healthcare like I can’t tell you. It’s tough! I went to conventions in Vancouver to learn like a sponge about bleeding and how to talk, and because of this, I was able to stick up for them and bring them to Sick Kids in Toronto. I learned the power of the word NO, I learned how to talk to teachers, how to show my factor card and not feel bad and “jump lines” in emerg, you can’t see us bleed on the outside. I would tell my kids never to look back, don’t feel bad it’s ok, but I wanted to cry because I would hear parents get mad seeing us go through, and that’s me as an adult now. But I need my needle or blood to stop bleeding. It’s not something I carry on me like a diabetic.

I learned how to talk to teachers. I had to read a book to a classroom about hemophilia at one point because information was sent out that shouldn’t have about my son. When you have a blood disorder, you are forever correcting people about what is right and wrong. People do not pay attention to your file or what you can or cannot do. They are scared of touching you, bumping you, playing with you as a kid; there is miscommunication everywhere. Even as an adult, I can have a medical procedure and have to remind them before and after of what I can and cannot have. We cannot have aspirin or any form of anti-inflammatory medications. It is not up for discussion, but yet there I am discussing it. Sometimes I have even called up to hematology to outsmart an ER dr. I will not even let anyone fill out a prescription for me. I need to be completely aware and awake from surgery to look at it because, you guessed it, mistake- someone not paying attention to my chart. 

I have stopped my son from having his wisdom teeth done because his bleed medication was not ordered and administered on time. The office staff and Dentist actually thanked me for not screaming but bringing attention to the importance of the lack of communication surrounding procedures in the office with such vital cases. This was the first time I allowed someone to provide the medication my son needed. Not only did I get a tour after, but I was also offered a job in the office. I cannot, he cannot, we cannot have any form of anything that makes us bleed. You get tired of reminding people, but this is our life. Like that day, I showed my son that we need to remind people to pay attention to our charts, files, Netcare, reports, whatever’s in front of them. I am the type of person that solves a problem, not create it. 

I take care of my dad, not physically, but after my mother died, I promised to be there for him. Well, let me tell you this past year has been difficult. I’ve had to stand up for him not only in emerg where I could not stay with him but having a language barrier being an ethnic senior they cannot understand and articulate properly. He was in a car accident, so I dealt with the officer for him, the same thing. You need to bring them to all these medical appointments in a covid world they don’t understand. It is so not fair for them, and it is my job to stand up for him, explaining it in a way he doesn’t think I will get in trouble, where he understands that if I don’t try and make a difference, next time the Dr might not have the same outcome with the next patient.

You see, in my line of work, I’m used to solving escalations—the keyword solving, not creating. Everyone makes mistakes, but in this world, we need to work together to be part of the solution. 

Healthcare right now especially is not easy to navigate. From doctors’ appointments to biopsies, to emergency rooms, to results, to covid screening, wearing masks, fogging glasses, our elderly parents being separated from us, our children, ourselves. Bring your voices forward and be heard so that it truly solves the problem when you are heard. I finish each call, each procedure with a thank you so they know I heard them, and they heard me. 

If you ever have questions, I advocate for health. My dad saw this, especially after the week we had! I will advocate for poor working conditions, for proper healthcare, how you treat the patient, and especially when we cannot be with them. I always look at the glass half full and what lesson can I learn from this experience? I always thank my work experience for how I’ve learned how to deal with people and my life experiences for dealing with healthcare. 

Tania Belcastro

Tania Belcastro

Tania was born & raised in Calgary, Alberta. She is the only daughter of Frank and Maria Driusso (whom she lost 27 years ago to pancreatic cancer at age 45). A promise she made her mother was to watch over her father and continue fighting her own medical battles. These were extremely trying for her as she had no idea how hard it would actually be—navigating emergency rooms, doctors' offices, and schools when you have undiagnosed medical issues and inherited bleeding disorders. Even now sticking up for our seniors in a covid world when they feel so lost and unheard. What we see as having a voice they see as being afraid. Tania is a wife to Domenic, a mother of 3 beautiful grown children, Lorenzo, Mariah, and Santino, 2 with inherited blood disorders. She has survived Thyroid cancer, skin cancer, endometriosis, has an undefined bleeding disorder, and has had multiple surgeries that have enabled her to maintain her voice in healthcare as an advocate over and over—for her children, herself, and her parents. Never be afraid to have a voice because YOUR voice is the one that can save others. Be the change you want to see.

29 Responses

  1. I am so very proud of this beautiful woman. She has a heart of gold and I’m lucky to know her and call her a friend.

  2. I am so grateful that you have shared your story. Talking about these kinds of experiences makes us all feel less alone. Sometimes we can feel that we are the only ones going through these horrible things. To be able to become part of the conversation is both healing and cathartic. The Great Canadian Women organization is helping to shine a bright light into the dark corners of women’s collective experiences. I am so grateful to be able to hear these stories. Thank you for writing!

  3. I’ve known Tania for many years and if there is one word that could describe her best, it’s RESILIENCY. This woman is the very definition of this word! The way she has navigated through incredible health care battles with compassion and grace reminds me that it’s much easier to roll with life’s waves than to be in resistance and thereby creating greater suffering. I know that when I need a boost she is there for me every time, standing in my corner being my biggest cheerleader. I’m honored to call Tania my friend for life.

  4. You are beautiful inside and out with the biggest heart, you’re such an amazing friend and always go above and beyond for everyone. You are an inspiration Tania!

  5. Tania has been dealt many challenges in her life, she takes every new challenge with a positive attitude and never gives up. She has always puts her family first before herself. We are very proud of this remarkable lady. You are a inspiration to all 💕.

  6. Tania you are such an inspiration and such a wonderful women. We are all so proud of you. Thank you for everything you do!

  7. Very proud of you for sharing your story! Sharing our story takes vulnerability and courage, but it can be cathartic and healing as well. It is so important for women to share their truths and experiences. It is through each other’s strength that we bond together to hold each other up!

  8. What a journey! I don’t know of many people who could have navigated this and remained so positive. Such a kind, caring and loving soul you are Tania. Truly an inspiration and a wealth of knowledge. Thank for sharing your story.

  9. It takes courage to share a story, strength to endure the set backs and faith to continue to move forward. You are helping so many people by speaking your truth with your whole heart. Thank you my beautiful soul sister.

  10. So happy for Tania for finally getting a platform to share her journey not only for herself, but for her family! I personally know her and we have had many conversations about both all of her experiences with healthcare and some of my troubles with mine. She is a great help on the matter and has really learned and is teaching me to stand up and say no this is not right! Don’t stop being you Tania❤️

  11. Well done, my friend! I’m so proud of you for sharing your story. You are an inspiration to so many and you always lead with your heart.

  12. I am truly blessed to know Tania and have her as a friend. Her friendship is infectious, and I am happy that she has shared her knowledge which, in turn, has helped me. Her strength is a great source of strength for everyone.

  13. You’re a teacher, an inspiration, and a leader that I would always follow. Thank you for being such a caring, giving person. You’ve touched and blessed many lives!

  14. I am a healthcare worker and Tania bringing awareness to the healthcare field is truly appreciated. She is a longtime friend and an amazing person!

  15. Tania it is so true to always be your own voice and have faith we all teach each other things
    in life to help us all. You are very inspiring.

  16. I’m so excited for the book!! 😂🤚We can make fried pickles and you can dye my hair while I read it!!! Hahahaha ♥️♥️♥️♥️

  17. Tan, you are one of the strongest people I know and I am in awe of you every single day! You have gone through very trying times but you always find the positive in every situation. What I love the most is that you are able to laugh through it all! You don’t complain, you conquer, you educate, you help, you give, you love, you support, you are selfless and you are there for everyone whenever they need you. Reading this chapter makes my heart smile and I am so very proud to call you my friend/sister. Don’t ever change, continue to be the force you are, and create change for the better! Your voice will always be heard because you refuse to give up! I absolutely LOVE you!🤍🖤💫
    Tash xoxo

  18. Tania ..is a woman of inspiration, caring and positivity. She truly makes a difference in people’s lives. She has a BIG heart. I am proud to call her a friend!

  19. Tania is a woman of inspiration, caring, positivity and a BIG heart!
    She makes a difference in people’s lives! I am proud to call her a friend!

  20. So proud of the resilient love you have carried and continue to carry with you! Thank you for being the Zia that you are, i am blessed to share a last name with you and am so inspired by you each and everyday ❤ you have such a beautiful soul and an even bigger heart! Keep kicking butt! 💃🏻

  21. I met Tania over 15 years ago under unusual circumstances actually knowing her Nona first. I thought she was an amazing lovely lady until I met her granddaughter. How could anyone surpass her but Tania is one-of-a-kind. She has gone thru many illnesses and sickness along with her family but I have never known her to be unkind or not have anytime to chat even when she is not feeling her best. She has given me so much insight and knowledge on Healthcare that has helped me tremendously. I am one of the lucky ones to have Tania in my life.

  22. I met Tania 2.5 years when her grandmother (Nonna) became my resident at the supportive living care I work at. Tania is an inspiration and such a wonderful women. I have learnt so much from her and she has become a role model for me! As a nurse she pushes me to fight and advocate for my patients/residents rights and health. I am so proud and blessed to be a friend of a strong, loving and caring woman. Thank you for being a ray of sunshine for all my residents, for taking time out of your busy day to visit residents whom their families had forgotten!

  23. Proud of you Zia 💜 so excited for the traction this is getting and so excited for this to inspire so many (as it already has).

  24. Very, very proud of you Zia! Look how many people you’ve inspired with your words already! Keep speaking up for what you believe in! Can’t wait to read the book!

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