Monday, August 15, 2022

Advocating at Medical Appointments

man wearing business suit

Self advocacy is often a trial by error skill that we learn out of necessity with chronic illness. Each encounter with a medical provider may be different and can be a teaching opportunity for us. Studies have shown that the more someone is motivated to be involved in their healthcare, the better health outcomes a person has. Self advocacy quite literally can make the difference in better or poorer health. 

I've been fortunate to be able to learn from my mother as I watched how she managed not only her own health with Familial Adenomatous Polyposis but also how she managed my medical appointments when I was a child and teen with the same health issues. I watched her in her dealings not only with medical providers but also the insurance and medical supply companies. My mother is a fierce advocate and I learned a lot over the years from her. Here are my best practices that I use for myself for my medical care.

  • Research
            The first best thing one can do is be armed with information in advance of your medical appointment. I research my symptoms and my health conditions on a regular basis and I gather information from a variety of sources - health websites, medical studies, medical communities, and medical providers I personally know. 

Knowing about one's health conditions and symptoms is vital not only for personal knowledge and self-advocacy but also to improve coping and adjustment to health issues. Giving up control of one's healthcare management to providers without any input or understanding of health conditions and treatments allows for opportunities for treatment options to be missed. 

Gathering information from various sources increases the identification of possible health conditions causing new or worsening symptoms, alternative treatment options that haven't been tried yet, and different medical tests to request.

For instance, I abruptly started having chronic nausea in 2015 after a hospitalization. The standard treatments of oral Zofran or Phenergan were not effective in controlling my nausea. I researched other medications and remedies for controlling nausea and I asked my online medical communities what has worked for others with chronic nausea. After a lot of trial and error and trying various over the counter and prescription options with my doctor, I was able to effectively control my chronic nausea with Compazine and peppermint oil. If I hadn't researched other options and requested my doctor to prescribe medications I was requesting, I wouldn't have been able to find a tolerable solution to my nausea management. I do the same with requesting medical tests and procedures to be conducted when I'm having a new or worsening symptom - whether that's a lab test or procedure such as a scope or imaging test.

  • Specialists vs. Primary Care
For appropriate care to be provided, it is crucial to be followed by the appropriate type of doctor for the condition requiring evaluation and treatment. Primary Care doctors are a great place to start for evaluation but if it is a condition outside of general care, we need to be seen by a Specialist for that condition or part of the body. Primary Care doctors have a general understanding of the body whereas Specialists specialize in specific conditions and parts of the body.

When seeking the care of a specialist there are several ways to find a specialist you're looking for. Such as obtaining recommendations or referrals from your existing doctor(s), requesting a list of Specialists from your insurance plan, recommendations from other patients in the chronic illness community, and online medical databases that also provide reviews. Depending on the condition and one's area, some patients choose to be seen by a Specialist outside of their state. 

I am under the care of 7 Specialists and none of these issues should be managed by a Primary Care doctor, they require the care of Specialists:
  1. Gastroenterologist manages my GI rare diseases and everything that comes with them and the GI organs I'm missing as a result. He monitors my lab values regularly, adjusts medications as needed, completes my upper and lower scopes on a regular basis, monitors my liver, etc.
  2. Hematologist manages my anemia. While my GI Specialist is able to manage my anemia through oral medication and iron infusions/transfusions as needed, a Hematologist specializes in blood disorders and has an even better understanding of my anemia than my GI specialist.
  3. Nephrologist monitors my kidney. I have renal cysts that she monitors via ultrasound annually, treats my UTIs, and monitors my lab values regularly. She manages my Vitamin D. While my GI Specialist is able to manage my Vitamin D levels and medication, Vitamin D and the kidneys are intertwined providing my Nephrologist a better understanding of this connection.
  4. Neurologist manages my Abdominal Migraine. Once I obtained a neurological disorder diagnosis, my Neurologist began managing my medications to treat the Abdominal Migraine including the pain and nausea that it causes. Previously, my GI specialist was ordering my Lyrica and nausea medications when we believed it was solely a GI issue.
  5. Endocrinologist monitors my thyroid. With FAP, a yearly ultrasound of the thyroid is needed to monitor for cancer risks. She also monitors my thyroid via labs as well. 
  6. Gynecologist not only monitors my reproductive health but she also monitors my hormones to ensure my estrogen is within range and not worsening my Abdominal Migraine. My organs are adhered to my abdominal wall and pelvis by scar tissue and I have a large ovarian cyst, she monitors these issues to determine if either are attributing or worsening my pain levels and to treat the issues as indicated.
  7. Dermatologist monitors and treats any skin issues I have. While I don't require regular appointments at this time, she has treated me for cysts and scars from my abdominal surgeries that weren't healing. 
  • Request and Review Medical Records
Obtain copies of all of your medical tests and procedures including history and physicals. Request the images of any imaging tests done. While the majority of people aren't able to read their own imaging disks, it can be helpful to have them on hand in case a future provider would like to see the images. Review your medical records, compare them to previous records, and ask questions to your providers about any concerns or questions you have in your records and test results. Keep a copy of your medical records in a folder to take with you to doctor appointments, especially with new providers.
  • Track Symptoms in Detail
Keep track of your health symptoms and any changes to them in detail so that you can accurately and fully discuss your symptoms with your provider. 
    • What the symptoms are and what they feel like
    • When they started, changed, or stopped
    • Duration of symptoms
    • What affects the symptoms - medications, foods, etc
  • Keep a List of Everything to Discuss at Appointments
Medical appointments can easily veer off track from how you anticipate they'll go and it can be easy to accidently leave out information or questions. To stay on track with your concerns and questions, keep a list of everything you want to discuss in your medical appointment - questions, symptoms, concerns, treatment or test requests, etc. Take with you any applicable medical records or research to your appointment with your list of things to discuss.
  • Create Online Accounts with Medical Providers
The easiest way to communicate with your doctors is to create online accounts. This is easier for you and for them. This saves you time waiting on hold and will reduce your wait time for a response. It is much faster for a provider to read your question or concern and reply to you than to try to reach you via phone. Some providers have online portals but don't check them as regularly as others. Ask your provider what their process is with the online portals. If you have sent a message and not received a response back within a week, call the office. 

Another benefit of the online portals is I receive electronic copies of all my labs, office visit summaries, medical procedures and tests that are completed with my lab and hospital system. I can also request records through my hospital online portal without having to call or fax a request. 
  • Maintain Regular Communication with Providers
If you have a change in health or a concern and don't contact your doctor in between your appointments, they will assume everything is stable. For your doctor to best provide care, it is essential to maintain regular communication with providers to alert them of any health changes, concerns, or questions you have. They are unable to help you if they don't know something has changed in between appointments.

The easiest way to maintain communication is via online patient portals, however, calling the office remains better than waiting until your next appointment when there's an issue. 

My GI specialist says I use my online portal more than any other patient of his!
  • Avoid HMO Insurance Plans
HMO insurance plans significantly reduce your medical care freedom by requiring referrals to see other doctors and also have a smaller in-network selection of providers. If at all possible, choose an insurance plan (i.e. PPO) that doesn't require referrals. Having the freedom to schedule your own appointments with any in-network doctor saves you valuable time, stress, and increases your ability to access medical care. 

As a child, when I started having chronic abdominal pain, my parents had an HMO plan. A referral to a GI specialist was required by the PCP in order for me to be evaluated. My PCP refused to refer me for evaluation stating I "was just a whiny child". My parents had to change to a PPO plan in order to obtain GI evaluation and it was discovered I had inherited Familial Adenomatous Polyposis from my mother and a year later I required my colon to be removed due to my colon polyps starting to turn cancerous. The possible alternative outcomes at the time are countless and unknown due to delay in care caused by having an HMO plan and a PCP who refused providing referrals. 
  • Obtain Consultations 
Don't hesitate to ask to be seen by other medical specialties for consults and second opinions. If you have a PPO insurance plan you can find a provider in-network and schedule a consultation without requiring anything from your existing doctors. Specialists are trained to focus primarily in their area of expertise and while your health issue may not be in the realm of another specialist, there's no harm in obtaining a consultation to confirm if something else is occurring.

For instance, I have been having chronic pain shortly after my 8th surgery to remove my gall bladder. After my surgeon released me after ordering a few tests to try to determine the cause of my pain, my GI specialist took over the evaluation. I obtained a second opinion from another surgeon and without success from the tests my GI specialist was ordering, I scheduled an appointment with a Rheumatologist and Neurologist for consultations. Rheumatology was unable to identify any issues in their field but the neurologist was able to provide me a diagnosis and treatment plan for my symptoms. It took 6.5 months and consulting 7 specialists, but I finally was diagnosed with Abdominal Migraine
  • Ask About Differential Diagnosis
A differential diagnosis is a list of possible conditions that share the same symptoms. This is not a final diagnosis but rather a theory of possible causes for particular symptoms. Once you have this list, then you can ask your provider about each potential cause of your symptoms - why does your provider think or doesn't think X is causing your symptoms and so forth through the differential diagnosis list.

  • Request Explanation and Documentation of Denied Medical Requests
If you ask your provider for a certain medical test to be performed or a medication to try and your provider refuses to order the test or medication, then ask why that test or medication isn't being ordered for you. After receiving an explanation, if you still believe the test or medication should be ordered and the provider refuses again, tell your provider that you want your request, the provider's refusal to order the requested items, and the reasoning for refusal to be documented in your medical chart. 
  • Change Providers
If you aren't comfortable with any of your doctors, discuss your concerns with the doctor and if the issues aren't resolved, you have the right to change providers - essentially firing them. This can be more difficult if available providers is limited by HMO insurance plans or the area where you receive care (i.e. rural). If possible, it can make a significant difference in medical care if one is able to travel further for care. 

There are some instances where the process of changing providers needs to be carefully done to preserve continued treatment. For example, a dialysis patient cannot receive dialysis treatments without being under the care of a nephrologist. While a dialysis patient can change to a different nephrologist, it is vital for the patient to have an accepting nephrologist before ending care with (firing) their nephrologist to avoid any lapses in their care.

Wednesday, June 15, 2022

Self Care Rituals Beyond Meditation

I attended a reconnection retreat this Spring focused on reconnecting to myself, others, and the universe. Here I learned and practiced new self care rituals beyond the typical meditation for mental health. As I've shared before, the last year has been physically and emotionally difficult leading me to relearning self care. I hope you'll enjoy the following as much as I did at my retreat.

Meditations have been found to have profound benefits upon the brain, mind, and body with just 11 minutes a day of meditation for 8 weeks changing the amygdala and hippocampus of the brain thereby reducing fear and increasing emotion regulation. 

The retreat day started by sharing a welcoming invitation into the space and welcoming yourself and your neighbor to be present with the idea that we are all on a pilgrimage. One's pilgrimage may differ from another's - perhaps it's a journey of self acceptance or letting go. No matter the personalization, we were on a pilgrimage in life and this brought us to letting go rituals.

Letting Go Rituals

We wrote about something we would want to let go of and then we could burn or bury it. Or perhaps, we would hold onto a small rock for the day's journey and at the end release the rock and what we had instilled it with and let go at the end of the day.

I chose to write a letter to my younger self and keep a rock that I was instilling the contents of the letter only I would keep both so that I may remind myself of what I needed to let go when I tend to forget. Also, the rocks symbolized a vault for me so I can lock away what I need to let go of inside this rock and look upon it as a reminder.

Dear Young Self,
You have endured so much trauma for such a young, tender age. Things no one should experience, especially as a child. These lessons seared into your being - flesh and soul, burned and scarred forever more. The pain so deep on the mind festering.
How were you to cope, there was no way. So you blamed others for your pain and waged war against them. Although you have forgiven most, there is still more to do. You are not free through you've tried so hard and worked so hard. The work is not done nor may never be. You are a work in progress and that is ok, that is life.
Give yourself the permission to be - to be how you are and how you want to be. You've come so far, too far to quit now. You will go so far when you let yourself be.
Life isn't all joy but it isn't all sorrow either. You can and should experience both. You need both to grow. It creates the right environment as there is no progress without lessons. Let yourself feel the pain, remember Let It Burn and the soul torture you felt and the strength it gave you. You have that in you still. Draw from it, use it. You don't always have to feel it, but remain aware and open to life.
Let yourself live and enjoy what life gives you. Do not over burden yourself. Let yourself be.

Labyrinths

Labyrinths were introduced as a physical meditation - to purposely walk slowly to allow the mind the think. The retreat grounds had two labyrinths to walk and a hand labyrinth was allowed as an alternative. There are a variety of hand labyrinths available for download here

I did not participate in the labyrinth exercise but it sounded like an intriguing practice I would like to participate in the future for the mental and emotional benefits of purposeful walking with contemplation. 

Gratitude Circle

Next was a gratitude circle with journaling prompts. There are a variety of mental health benefits for a regular gratitude practices.

First we envisioned ourselves during a visualization as our future selves. What does your future self look like, where are they and what do they share with you? How are you different?

Within the gratitude gathering circle, what are you hearing lately and how have you been responding? What do you need to hear? What gifts do you have that you can ponder upon?

Utilizing a form of GRACE as a Daily Examen,

  • Gratitude - ponder what you're grateful for
  • Request Oneness - seek wholeness and harmony with the universe 
  • Attitudes and Actions - think of your attitude and actions, do they align with a grateful heart
  • Cocreate - convert or change one thing to another - negative to positive
  • Enthusiasm - enthuse about your gifts, gratefulness, and life

My future self told me that I have, I need strength, courage, and appreciation. Strength and courage to make changes and go through changes of life. Appreciate people in my life, keep them in my heart now and relish, savor time with them. Do what makes me happy, find happiness in what I do. Let myself make changes if I need to in order to be happy not just safe but also happy. There is happiness in where I am and what I do but I can change to find more if I want to. 

It came to me during the circle that I place a lot of pressure upon myself to do everything even when I'm told by others that I don't need to do everything. I need to give myself permission for openness to life and to balance.

Lectio Divina Meditation

We then completed a Lectio Divina exercise with the poem Finisterre. This was completed in a group by slowly reading the written work three times. The first time to identify a word that illuminated itself to yourself, the second a phrase, and a third time to journal our reflection. This practice could be done with any written work.

Finisterre

The road in the end taking the path the sun had taken, into the western sea, and the moon rising behind you as you stood where ground turned to ocean: no way to your future now but the way your shadow could take, walking before you across water, going where shadows go, no way to make sense of a world that wouldn't let you pass except to call an end to the way you had come, to take out each frayed letter you had brought and light their illumined corners; and to read them as they drifted on the late western light: to empty your bags; to sort this and to leave that; to promise what you needed to promise all along, and to abandon the shoes that had brought you here right at the water's edge, not because you had given up but because now you would find a different way to tread, and because, through it all, part of you would still walk on, no matter how, over the waves.

- David Whyte

For me, the word that highlighted itself upon the first reading was promise and the phrase upon the second turn was at the water's edge. And so I reflected upon this and journaled:

I am at a precipice, a turning point where I can change my course to whatever I want. I owe that to myself, to care for myself and do what would be good for me. I need to honor myself by taking care of myself.  

Metta Meditation and Sound Healing 

We completed the retreat with a guided Metta Meditation and Sound Healing. We were guided through the following loving kindness meditation to help replenish ourselves so that way me then replenish others. During this, we thought of those important in our lives who drew support and love from and who we wished to send support and love to as well.

Metta Meditation - Loving Kindness Meditation
May I be happy
May I be healthy
May I be free of suffering
May I live in peace
May my life be blessed with ease

May you be happy
May you be healthy
May you be free of suffering
May you live in peace
May your life be blessed with ease

For the sound healing ceremony, or sound bath, our guide then played a variety of music from a gong to Tibetan bowls to create soundwaves that reverberated through our bodies and minds. At times the sounds were overwhelming and felt as though they entered and left the body entirely. 

Monday, May 23, 2022

10 Year Blog Challenge



It's Life's a Polyp's 10 year anniversary! One of the ways to celebrate I thought would be to do the 10 Year Challenge but blog style!

So much has happened for LAP and myself in the last 10 years. I shared about previously in The Evolution of Myself with Chronic Illness how I've evolved in a large part thanks to LAP and the online Familial Adenomatous Polyposis community that not only urged me to start a blog but also has supported me throughout the years. 


I went from an incredibly shy individual shrouded in anonymity to identifying myself and broadcasting my own medical experiences to anyone who will listen over the last 10 years.

To begin, this was my profile and banner in my effort to remain anonymous. Carrying the symbolism from LAP into my photos, I edited using red filters.

 I couldn't bear the thought of bringing attention to myself directly or being "found out" in fear of judgment for my health experiences. I was still insecure about my rare diseases and the personal details that come along with chronic illness, specifically GI illnesses.



Staying with the red theme of the GI tract, I edited a photo I had taken and used for my then husband's business.





Then I drew myself riding a polyp in the colon to portray the symbolism of Life's a Polyp.



 



With the encouragement of a very kind lady, who made alot effort to discover my likely identity in order to reach me and help me further the reach of Life's a Polyp.

This extra encouragement and support gave me the strength to reveal myself to the world.

With this new level of confidence, I had a few photos taken and this became profile photo.

I love the symbolism of this photo - slaying the infamous FAP polyps in the colon.




For the next wave of banners, I used another photo from the session with the same symbolism.




And of course, as LAP expanded, I updated the banners to reflect new avenues such as the LAP Shop and YouTube channel. 




And today you see the newest profile and banner photos thanks to Mike!



To celebrate a decade of education, awareness, and empowerment Mike designed the special anniversary design for me which was added to Life's a Polyp Shop, we had 3 restaurant fundraisers for the NORD FAP Research Fund, raffles, and Imagine We Publishers donated 10% of sales of Life's a Polyp with Zeke and Katie to NORD FAP Research Fund as well! 

I also wanted to share some of my favorite blog posts and memories over the last 10 years.

Over the years I've had some wonderful guest writer articles including:

2021

2020
2019
2018
2017
2016
2015
2014
2013
2012

Monday, April 25, 2022

My New Diagnosis: Abdominal Migraine

After 6.5 months of chronic pain that was only improved but not cured by Lyrica, consults with 7 types of doctors, a multitude of tests and an absorbent toll physically, mentally, and financially - I finally have a diagnosis: Abdominal Migraine

All of my tests have come back normal from my various specialists except for my pancreas enzyme and platelets that were elevated. I underwent 2 CT scans, abdominal ultrasound, MRCP, 3 MRIs, EEG, sleep deprived EEG, EMG, nerve condition test, and a neuropsych test with all unremarkable results that provided no explanation for my new symptoms and pain. With these normal results, my neurologist came to the conclusion that I likely have abdominal migraine which is a type of migraine. 

My doctor explained that migraine is a chemical imbalance in the brain and depending where at in the brain determines what type of migraine and mine happen to be abdominal. He stated this would explain my trunk pain, chronic nausea, dizziness, scalp sensitivity, hearing sensitivity, headaches, lightheadedness, brain fog, appetite loss, and chest pain. Through our discussions and medical history review, we came to the conclusion that my abdominal migraine started in 2015 after I fell and hit my head. A couple days after the fall, I had a sudden, intense headache that pain medication was unable to treat and after that I've had chronic nausea ever since.

The only medication that's been able to manage my chronic nausea is Compazine, which is an abortive migraine medication to break through migraine symptoms. And Zofran can actually trigger a migraine and hasn't been effective in managing my nausea. To treat my abdominal migraine, he's started me on Amitriptyline which is a preventative migraine medication. 

My doctor explained that abdominal migraine is typically diagnosed among children and often forgotten about for adults often leading to other diagnoses such as IBS. Through our discussions though, this diagnosis makes sense considering all of my accompanying symptoms and the time frame of events. I'm relieved to finally have a diagnosis and a new treatment to pursue for my symptoms. 

It will take 6 weeks for the Amitriptyline to reach it's fully effective state and I've been taking it for 4 weeks now. During the 3rd week, I started noticing periods of time where I was pain free for the first time since these new pains started. I am still requiring the Lyrica in conjunction with the Amitriptyline presently to treat my pain but this may change over time as the Amitriptyline reaches full efficacy levels in my body and dosage may be adjusted. I haven't been experiencing nausea either. I will see my neurologist in another 4 weeks and any medication changes will then be decided upon as he didn't want to make any changes to my Lyrica or Compazine yet. I haven't had any changes to my appetite, although I'm not bothered by that. 

I look forward to my next neurology appointment to see what medication changes may be decided upon and continuing improvement to my symptoms now that a diagnosis has been reached. 

Wednesday, March 30, 2022

Colon Cancer: A Family Tribute and A Reminder

This March, Colon Cancer Awareness Month, hits harder this year than those previous. Colon cancer runs in both sides of my family and as a person with the hereditary colon cancer syndrome, Familial Adenomatous Polyposis (FAP), I particularly know the importance of colon cancer screening firsthand. 

Due to my FAP, I required my colon to be removed at age 9 as my precancerous polyps were starting to turn cancerous. A fact that was difficult to obtain as my primary care doctor had refused me the necessary referral to be evaluated by a GI specialist - a refusal that could have cost me my life. 

Colon cancer goes beyond me though. FAP runs in my mother's family. She was diagnosed with colon cancer just 3 months after I was born. My grandfather had FAP and had colon cancer as well, he later died from stomach and esophageal cancer caused by FAP. Both of their stories can be read in Touch of Cancer.

Beyond my grandfather, other members in his family likely had FAP including his sister, mother and her two brothers, three cousins, and two nieces. Beyond that, we are unsure who else has since had FAP among their family lines. 

Colon cancer also runs on my father's side of the family. In his family, my grandmother died of colon cancer and two of my aunts have had it - one being my aunt Martha who we recently lost.

My aunt Martha was extremely healthy her entire life until she developed colon cancer - likely about a year or so ago. Good genes and long life run in my dad's side of the family - several family members living into their 100s. My dad is the youngest of 7 siblings - the oldest one is still in good health at age 89.

Martha was 83 and could have likely lived a much longer life if she had completed the recommended colonoscopies to prevent colon cancer. She never went to the doctor as far as I'm aware of since becoming an adult.

She began having symptoms of unexplained weight loss, bloody stools, change in bowel habits, loss of appetite, weakness. We weren't aware of all of these changes - only the weight loss. She wasn't diagnosed with colon cancer until mid-February 2022 when she was basically forced to by my parents after she fainted upon answering her house door. As it was told to me, she figured she had colon cancer just like her mother, but she had been refusing to go to the doctor or hospital out of fear of never returning to her home. Unfortunately, once she finally agreed to be evaluated, she was diagnosed with colon cancer with metastasis to the liver and lungs that was terminal and given 8 weeks to live. 

Sadly, we lost her on March 22, 2022 - 5 weeks after diagnosis. My last visit with her she was barely able to speak and hard to understand, she had difficulty staying awake. We were fortunate to have hospice care available to keep her as comfortable as possible during the last weeks of her life as the pain did become increasingly worse.

Please take heed from the story of my aunt Martha and complete your recommended colonoscopies for prevent colon cancer in yourself. Please go to the doctor regularly and notify them of any changes in your health, any symptoms you experience. Please do your best to not be another colon cancer statistic.

My Tribute to My Aunt Martha

Martha and Me
My aunt Martha was a steadfast, loved, and integral presence in my life. She was one of several family
members who literally helped raise me from the age of 3 months. She spoiled me to no end as a child whether it was ensuring I had plenty of my own clothes to keep at her house, displaying my portrait on her mantle, or unnecessary gifts such as my 3-foot christmas stocking full of items.

She taught me to enjoy a variety of word puzzles, jigsaw puzzles, solitaire, and mahjong.

She supported everyone in her life, she was always in everyone's corner no matter what. She showed her love through gifts and loans to support others in their life goals and interests. She was ever giving and generous to a fault. She constantly put others ahead of herself even if it caused herself harm. She was ever more concerned about others, their feelings, and not wanting to inconvenience others than she ever was about herself.

If she discovered something that you liked, she would surprise you with a gift of that item even if that meant trying to give you her own possession. Even when she was in her last weeks of life, she wanted to read my children's book to show her support.

She was an avid believer in the power of positive thinking. Every time when asked how she was, her favorite response became "I'm phenomenal!" and said with as much enthusiasm as possible.

She was notorious for bad directions and odd quirks. During one trip to Texas, a route she had driven a multitude of times, she suddenly exited somewhere unfamiliar to me. When I asked her where we were going, she responded "I don't know, I just followed the line". She was able to laugh at herself during such instances.

She was my aunt, who I have held dear in my heart since infancy and will forevermore continue to do so.