When Your Doctor Doesn't Believe You

Last year my pediatric GI doctor of over 20 years decided to push me out of the nest and transition me to an adult GI doctor. During my hospitalization last year I faired well with the change in doctors as my new doctor and I started the song and dance of a newly established patient-doctor relationship.

My doctor specializes in short bowel syndrome, which is one of my conditions courtesy of my surgeries related to Familial Polyposis. At my appointment three months ago, my doctor explained that I have the proper sections of my small intestine required for absorption of iron and B12 and therefore do not require these medications. My hair stood on end, I knew differently. I've been taking these medications since my first surgery at age 9. I knew better. However, in a stubborn fit of wanting to prove my self knowledge and gaining my doctors trust in my knowledge, I agreed to forgo my medications for a three month trial.

I was unable to complete the three month trial without my B12. I began to experience exhaustion, sensitivity to light, and numbness in my extremities. I began to worry about the security of my employment under these conditions as well as my daily ability to function. Two weeks prior to the end of the trial period I restarted my daily B12 microlozenges and started to return to my previous state of health. However, I was able to forgo the iron the entire three months.

Lab day came and it was a show down between my doctor and me. Who would be right, who knew me better? He argued my iron and B12 wouldn't drop much in the course of three months from where my levels previously had been.

My B12 was excellent at 793...but I also had restarted my B12 two weeks earlier. With the results skewed, we'll never know how low it had been. I'm okay with that...I was more worried about my iron at this point. 9.4 with a saturation of 2%. Ding Ding We have a winner. Without an ounce of surprise my body held true to its trends. I do require iron and B12 and was ordered to immediately restart my iron.

At my appointment I requested an ultrasound of my thyroid as annual screening is recommended due to the elevated risk of thyroid cancer associated with Familial Polyposis. My doctor found annual screening to be overboard but nevertheless consented. I'm grateful he proceeded to order my thyroid ultrasound for that day as a small solid nodule was found in both lobes of my thyroid. Although most likely benign, it will be important to continue monitoring these nodules as solid nodules have an increased risk of malignancy compared to non-solid nodules.

With my body following my expectations, I'm hopeful that my doctor has gained trust in my self knowledge and understanding of myself.  My body doesn't follow textbook protocols and never has. The sooner my doctors realize and accept this reality the better it is for my care. Perhaps now he will listen to me more with less argument about what my body does.

Sometimes doctor-patient relationships require give and take from both parties as the relationship grows into a partnership for care. Any new doctor-patient relationship may experience a few bumpy courses as both parties are learning the ways of one another and progressing toward a mutual understanding. If you are finding yourself on a bumpy course with your doctor, be open with your doctor about your concerns and work toward a compromise together. Although my doctor doesn't always see eye to eye with me, I'm grateful that he has been cooperative with my medical requests as our relationship becomes cemented.

Healthy Habits

I lie on the floor with my arms by my sides, breathing in through my nose and out of my mouth, my mind clear. My breathing focused and my spirit calm. My body is heavy against the floor in this relaxed state known as corpse pose as I complete another day toward a healthy habit.

 It takes about three weeks to turn a behavior into a habit. Sometimes that three weeks is a long time when you're trying to build healthy habits. I'm not the exercise or even constantly healthy eating type. My commitment to such healthiness is sporadic. I abhor exercise and I have strong cravings and lack of self-control for the food I love. I go through cycles of increased healthiness after a bout of gluttony and laziness. I'm starting on an endeavor of health consciousness - involving daily yoga rituals and healthier eating. And I feel great (well, for the most part for me)! Some days I have to force myself to exercise but the longer I do this the less of a thought out plan it becomes and instead progresses toward becoming a habit.  I've learned a few things with my recent dedication that I'm aiming to turn into habit.

Self care involves more than tending to the mind and spirit but also the body.

The ultimate goal is to build a strong mind and body.

By nourishing my body with exercise in the form of yoga and healthy foods I'm helping to nourish my mind. This time is rewarding as I set it aside for 'me time' to focus on myself and let go of the worries of the world. The beauty of yoga and similar exercises is that relaxation and meditation moments are built in as the body connects with the spirit. Each pose focuses my mind and breathing. My attention placed on the within rather than merely the physical strength each pose demands.

My body welcomes fresh foods rather than processed and high fat junk foods. The flavor of a balanced meal becomes rewarding in itself and my body appreciates the healthiness with added benefits of no longer feeling bloated or sluggish. Previously when I followed the Anti-Inflammatory Diet my body quickly detoxified itself, losing weight rapidly, and improving my health within days of cutting out unhealthy foods. The difference in how my body felt before and after was remarkable. Staying hydrated is a challenge for me at times due to how quickly my stomach becomes full resulting in stomach cramps. I have been working hard to drink at least the minimum recommended amount of water everyday and I'm noticing improvements as I'm rewarded with hydration and further detoxification.

It can be difficult to change our habits, whatever they may be. But it can be very rewarding to change old habits and create new ones, particularly when it is for the betterment of ourselves. We deserve self-improvement and the effort that is required for self betterment is always worth it in the end. We just need to remind ourselves to continue to push through. We'll love ourselves for it later.

Camaraderie of Chronic Illness

For those of us with a rare disease or other chronic illness, it doesn't take much to relate to one another regardless of the diagnosis. Our commonalities create an instant bond, an instant understanding of another's life with chronic illness. We don't need the same diagnosis or even the same symptoms or experiences. We experience enough and know enough to have an idea of what life is like with that condition.

We Share a Medical Life

• We share many of the same symptoms across conditions.

               It isn't uncommon for us experience the same generic symptoms that sweep across the board of conditions. We often simply feel sick - that blah icky feeling that leaves you drained of energy and good health. We tend to have susceptibility to common ailments such as a cold or the flu. Fighting for our immunity is a known battleground for our health. We likely experience some type of chronic pain. Within subgroups of conditions, we share even more common ailments. Those within the GI condition group experience some type of stomach upset whether it's nausea, pain, or bowel issues. We have additional uncommon symptoms but we have a primary source of shared symptoms with different causes. But no matter what - we can relate.

• We share the balancing act between the medical and our daily life

              Our days are occupied with  an abundance of medications, medical appointments, and more frequent hospitalizations than those of the average healthy person. We know the burden of medical expenses and the absorbent amount of time required for managing our health. We relate to the frustration and demands of balancing medical obligations and our everyday life. We understand choosing between one activity over another because our body may not let us complete both choices.

• We share the struggle of disclosure

              Disclosure can be a tricky subject. Knowing what and when to share with the various groups of individuals in our lives isn't always easy. What and when do we share information with potential and present employers, potential romantic partners, friends and family? It can be difficult to know the right timing and amount to share our inner most health secrets. We share the same worries and concerns about if our disclosure will be met with understanding and acceptance or rejection and ridicule.

We Share a Personality

• We share important life lessons and virtues

               We know what it means to persevere, to have inner strength and determination. We've learned what it takes to survive and to survive on a daily basis. It takes real strength to not give up; to keep chasing our dreams and to make the most out of life. It's hard business keeping up with life when you're sick yet we manage to everyday.

• We share a deep appreciation for life and achievements

               We've learned not to take life for granted. We've all lost many loved ones with similar health issues. Repeated losses teach us to cherish everyday, especially the good days. And on those good days we're extremely proud of our accomplishments. It isn't always easy to achieve your goals when you're dealing with a chronic illness. We appreciate how far we've come in life in the midst of health issues and make the best out of each day that we can.

• We share with one another and support one another

               No one knows as well as another chronically ill person the difficulty that one faces on a daily basis. We share our stories with one another and we band together in whatever form available to create a strong support network. We honor and respect others for their achievements. We celebrate the victories of others, small or large, and we empathize during the bad days when life can be trying and discouraging.

You're Not Lost: How to Find Yourself When Life Takes a Detour: Amy's Story

This is a guest post by Amy Oestreicher

Sometimes, the best way to find yourself is to just get lost. When you don't know where you’re going, the world can be a scary place. That’s what drives our to-do lists, our calendars, our goals and our life plans. I know this all too well, as someone who had a minute-to-minute agenda, planning and plotting every major milestone in my life from birth to bachelor’s degree to Broadway debut. But sometimes, life takes a detour. Something that a 2016 yearly planner can’t always account for.

What’s a detour? Google has an answer for that:

noun 1. a long or roundabout route taken to avoid something or to visit somewhere along the way. "he had made a detour to a cafe"

verb 1. take a long or roundabout route. "he detoured around the walls" A detour, according to its French origins, literally means a change of direction.

I, however, have my own definition of a detour:
A detour is a curve in the road of life, a bump in a path, a big sign in the middle of your trip that says, “sorry, you have to go THAT way.” Nobody expects a detour to happen in life. It’s what happens when we think we have things planned and all figured out…and then we’re thrown a curveball.

A detour is many things – unexpected, a nuisance, difficult, hard to grapple with, frustrating, – but it can be beautiful. Sometimes, we can’t appreciate how beautiful our detour was until we’ve made multiple twists, turns and deviations in our “set-out” path. Sometimes, we can’t realize the beauty of our detour until we spend a bit of time traveling it – we need to give that detour enough time to form a story of its own. After all, every good story comes from a detour. What would be so funny about a forum if “A Funny Thing [never] Happened on the Way to the Forum? (It’s a musical, FYI.) By sharing our stories, we make sense of our “detours.” We reframe our “derailments” as the intricate pathways that make up who we are today. When we tell others about our detours, we become travel partners on these journeys with no straight path. When we know we’re not traveling alone, that road becomes an adventure. Who can say they’ve never had an unexpected glitch in their life-plans? That’s a detour.

What detours force us to do is explore new opportunities. When we can’t go in the direction we anticipated, we’ve got to switch gears and adapt. We have to resource inner strengths that we never knew we were capable of accessing. When we achieve the “unthinkable”, we discover who we really are. Even still plagued with wounds, scars, and some medical issues that haven’t been resolved, I’ve found beauty in the detours. If I took away all of the setbacks, hurdles, frustrations and detours, I wouldn’t be who I am today. Telling my story made me realize the true beauty of my detour. That’s what makes me a Detourist.


What’s a Detourist? A detourist travels along detours – simple enough. But in addition, a detourist embraces those unexpected routes as opportunities for growth, change and self-fulfillment. I’m living proof that a detour can lead to unexpected blessings. As a detourist, I look for the upside of obstacles. I welcome the unexpected change in my “thought-out” life, and see what opportunities may arise.

Because of my ten-year surgical marathon, I’ve written a one-woman musical about my life, Gutless & Grateful, I discovered the world of mixed media art, I've met amazing people, discovered incredible new experiences, and have been through the worst to make room for the best. Starting a Movement How do we make the best of a detour? Sometimes, we just need to hear that other Detourists have navigated their paths triumphantly. What I’ve experienced is, the more inspiring stories we hear about Detourists turning an obstacle into an opportunity, the more empowered we are to transform our own lives and have confidence that when life DOES surprise us, we’re capable of getting through anything. #LoveMyDetour Now, I want to inspire people to flourish because of, rather than in spite of challenges.#LoveMyDetour aims to encourage growth and healing by sharing our stories; to transform communities by inspiring people to open their minds and reframe their view of “detours” into a new direction for life. That’s why I’m spreading #LoveMyDetour around the world.

With that in mind, I’d like to leave you with six ways to love your detour: 1. Savor the element of surprise. Straight paths are boring. 2. Find one beautiful flower along the path and name it after the detour that led you to it. 3. Keep traveling to see where it leads. 4. Find a new friend along the path. 5. Use it as a chance to locate your internal compass. 6. Put the pedal to the metal and take the best road trip of your life! So how do you get un-lost? You know how you realize you're normal once you realize NO ONE is normal? Well you get un-lost when you realize were all detouring together. If we keep going, we're not lost. We're Detourists. Thriving Through Detours #LoveMyDetour is a campaign inspiring people to flourish because of, rather than in spite of challenges. #LoveMyDetour aims to encourage growth and healing by sharing our stories; to transform communities by inspiring people to open their minds and reframe their view of “detours” into a new direction for life. “Detours” have created the most scenic surprises in my world. Now, I envision a world where “detours” in life are everyday blessings. The road is open with open possibility, with voluptuous curves, with wandering wonder. Safe travels, Detourists!

 Learn more about creating compassion through our detours at amyoes.com.

Amy Oestreicher is a PTSD peer-to-peer specialist, artist, author, speaker for RAINN, writer for The Huffington Post, award-winning health advocate, actress and playwright, eagerly sharing the lessons learned from trauma through her writing, performance, art and speaking. As the writer, director and star of the Gutless & Grateful, her one-woman autobiographical musical, she's toured theatres across the country, earning rave reviews and accolades since it’s BroadwayWorld Award-nominated NYC debut. As a visual artist, her works have been featured in esteemed galleries and solo exhibitions, and her mixed media workshops emphasize creativity as an essential mindset.

Amy’s “beautiful detour” inspired her to create the #LoveMyDetour movement, a campaign inspiring people to flourish because of, rather than in spite of challenges. As the Eastern Regional Recipient of the Great Comebacks Award, Amy has spoken to hundreds of WOCN nurses on behalf of ostomates nationwide. She is a regular lifestyle, wellness, and arts contributor for several notable online and print publications, and has written for over 50 online magazines and blogs. on Her story has appeared on the TODAY Show, CBS, Cosmopolitan, Seventeen Magazine, among others.

Amy's passion for the arts as a means of healing and expression led her to devise storytelling workshops for the Transformative Language Arts Network National Conference, the Eating Recovery Center Foundation, and The League for the Advancement of New England Storytelling.

Determined to bridge the gap of communication between wellness resources on college campuses and students, Amy is currently touring college campuses with a program combining mental health advocacy, sexual assault awareness and Broadway Theatre.

For information on keynote presentations, private coaching, workshops and signature talkbacks, visit amyoes.com and follow her on Twitter Instagram, Etsy and Facebook.

When You're Alone

I never truly allowed myself to believe I'd marry. I didn't think I'd find someone who would and could love me as much as I needed with my chronic health issues. I would require caregiving on a frequent basis and likely at some point, I'll require it on a much more regular basis. That is a lot to request from another person, especially from the very beginning of a relationship and a marriage. Could I find someone who would be willing to take on this responsibility from the get go? I did and I thought my life was complete...or so I thought.

From a set of unfortunate circumstances and events, I lost my trust and the life I knew had changed and I couldn't change it back. My complete life was being torn apart and divorce was on the horizon. I have a new life to fulfill on my own now.

Facing a life alone with chronic illness and the possibility for a cancer diagnosis again in my future was a terrifying choice but it was a choice I had to make. I felt completely alone in the world. Questions raced through my mind, filling my heart with fear and anxiety.

What would I do if my health worsens? What would I do if I developed cancer again? What would I do if I couldn't work anymore and support myself? What would I do? What would happen to all my dreams? Can I do it all alone? 

 Making that choice was the hardest part.

Once I made the choice, as difficult as it was, a relief began to set over me. A relief that would grow the more I shared my concerns with my friends and family. A concern that was fettered away by more and more people. My primary support system offered reassurance and oaths to never leave me alone in this world. I would be taken care of when the time came. In addition, I will be purchasing long term care insurance to ensure the financial burden of caregiving is provided for without need from others. I'm doing everything I can to ensure my own well being is cared for - by myself or by caregivers.

I'm learning more than I ever expected during this process. It never ceases to amaze me how much we can never truly prepare ourselves for all that we will encounter in life though we try.

I'm learning to value and fiercely protect my independence. To stand on my own two feet and create the life I want for myself is the greatest accomplishment I'll achieve and I am excited to create a masterpiece. To lose my independence is now my greatest fear. I will fight tooth and nail to maintain and support myself and will gladly do so. My eyes have been opened to the joy that is self sufficiency and the fulfillment that accompanies it. I'm finding that independence is much more than financial independence - it is the emotional and mental survival in the face of destructive forces.

I'm learning to cherish my support system more than ever. I'm gradually becoming accustomed to turning to the people in my support system when I need a shoulder to lean on. I'm discovering that independence isn't not leaning on anyone ever but discerning between periods when I can handle an emotionally tough time on my own and an overwhelming period when I need my support system's aid. I'm letting my people be there for me and am gratefully returning the favor.

No matter what is yet to come, I'm looking forward to tackling each issue with a new set of skills that I continue to hone. And I've realized, we're not alone after all - not as long as we let others in.