A Patient's Perspective on How to Live Well with Autoimmune Disease

01 Personal Health Report: PHRs Explained


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Hello, everyone!  And welcome to a new series I like to call my Personal Health Reports or PHRs.  Just like many bloggers produce a monthly Blog Income Report to share their successes and challenges in blogging with their readers, I intend to share the same; however, instead of my successes and challenges being about income or expense, mine will be about what I am currently facing in my own health journey.  Even though I want this blog to be a space where autoimmune warriors, like myself, can find resources and tips for living well with autoimmune disease, I also want to share my own personal journey as it happens in case any of my experiences can be helpful, informational, or reflective for someone else as well.

My Patient Experience Explained

In reference to writing my own Personal Health Reports (or anything on this blog for that matter), I want to make one key ingredient to my blog very clear: I am not a medical professional of any kind.  I am not a nurse, certified health coach, or medical doctor of any kind.  I actually do not have a background in medicine or science at all. Instead, I am a high school English teacher, published author, and photographer by trade that just happens to be blessed with a love for research, a passion for helping others, and a unique set of health challenges.

Before becoming ill with autoimmune disease, I had no interest in the science behind health and wellness, diet and nutrition, or healthy eating and exercise.  Frankly, it has always confused and overwhelmed me to some degree; however, now that I have lived approximately 25 out of my 32 years on this Earth with illness, I’ve learned to use my passion and skill for research, reading, and writing to help me become my own best health and wellness advocate.  This blog is not necessarily about acquiring the massive amount of medical knowledge one needs to truly understand autoimmune disease but instead, is for giving me an avenue to share what I find and experience with others through my own personal gift of writing.  It is my hope that by sharing my experiences with autoimmune disease with others, I can somehow help them in their own health journey as well.

A Touch on My Writing Experience

Sharon Gaster’s high school life was not a happy one. From family to loss, murder to mystery, and betrayal to death, young Sharon’s fate had truly been set from the beginning. But when two friends interfere with this fate, could her destiny truly be changed?

Over the years, I have used my writing skills in a variety of contexts.  As a young child and teen, I wrote stories in notebooks and even passed a few around to my friends.  As a senior in high school, I devoted my final graduation project on writing (and completing) an entire novel from beginning to end.  After high school, I pursued publishing this novel with a few reputable publishers.  At 19, I finally published my revised novel titled Life Neverlasting in December 2005.

Since then, I have published poetry, written blog posts, and captured everything that I could on camera.  Then, as I pursued a Master’s degree in Education, I devoted my practicum on completing an educational research study on the Benefits of Online Education for Students with Special Educational Needs. At 29, I graduated from my Master’s program and with help from one of my professors, professionally published my study in the British Journal of Special Education.  Since then, I have been teaching full-time as an online high school English teacher as well as part-time as an adjunct college writing instructor and love absolutely every minute of what I do.

Finding and Strengthening My Patient Voice

Besides teaching, I have to admit I’ve struggled to find my voice a bit.  I have always wanted to start a blog about my experiences with autoimmune disease but have had a very hard time finding my purpose, my calling, and my reasons for writing.  For whatever reason, I felt like I had to be an expert in the medical field or professionally certified in something to feel like an expert in anything.  I found myself starting and deleting this blog multiple times and have always doubted myself and my abilities.  Was my story truly important enough to share with the world?  Was I writing to benefit myself or to benefit others?  Could I really do this?  Is there really a place amongst the millions of blogs found on the internet nowadays for my voice to be heard?  And the answer to all of these questions is YES.  Even as patients, we all have a unique perspective as well as many experiences that are worthy and important to be shared with the world.

We don’t need a fancy title.  We don’t need an “official” medical certification of any kind.  Heck, if “professional patient” were a certification you could have, I’m sure there are many of us, including myself, that would fit the bill.  We are skilled in autoimmune disease because we live it every day.

Our stories are important because they are different.

It’s through these stories that we can truly find answers.  Regardless of what medical knowledge you or I may have, I strongly believe there is nothing better than information that comes from someone’s personal experiences.  And that is what I truly have to offer. I am here to share my own personal story and experiences with autoimmune disease with the world in hopes that the information I share will help someone else in similar circumstances.

So, even though you or I may not be medical professionals of any kind, our patient perspectives are still valuable.  I do believe that a medical professional’s opinion definitely has a time and place in our world but for now, I want to bring more awareness to what we, as patients, really go through.  We are in the trenches living with autoimmune disease symptoms, flares, and challenges each and every day.  We know what it feels like.  And we know how hard it can be to explain our successes and challenges with someone that doesn’t have to survive in our world. Our circumstances are unique.  They are different; but, that doesn’t make them any less important.

Let’s help bring a voice to the patient perspective while we learn how to live well with autoimmune disease!


A PHR Purpose; A Patient’s Point of View

With my Personal Health Reports or PHRs, I intend to share my story in order to accomplish the following:

  • Bring awareness to and advocate for autoimmune diseases, conditions, and symptoms through a patient’s perspective
  • Encourage and inspire others to still have hopes and dreams even in the midst of the limitations/modifications autoimmune disease places on our lives
  • Provide a patient’s perspective on proposed solutions, challenges, programs, supplements, and guidelines related to living well with autoimmune disease
  • Educate others on disease information, resources, and research available to them to aid them in their own healing journey

This has truly been a dream of mine for years, so I am super excited to begin this lovely blogging journey with you!  I cannot wait to share all the information, knowledge, and resources I have stored in my autoimmune disease toolbox! Now, all I have to do is write about them!


Thank you for your interest in my Personal Health Reports and I hope you enjoy reading my own personal health updates!  Want to keep reading?  Head on over to the second installment of my PHRs:  The Childhood Edition!

 

As you are reading, please do remember that I am not a medical professional, nurse, health coach, or any other health professional of any kind.  I am a patient with years of experience with autoimmune disease and will be sharing information and resources from a patient’s perspective; however, please do keep in mind that anything that I share here should not replace any medical advice you should receive from a doctor or other medical professional.  Please consult with your doctor before changing anything in your routine or care.

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