Inspired by 600-lb Lives

As 2018 came to an end, I realized that I needed to become more physically active. So, I took an online class. Yes, I see the irony in that decision. I need to move, so I sat and read and took exams. Yet, when the course was over I had reviewed the recommendations for physical activity, set a few SMART goals, and purchased a very simple step counter (1).

During January of 2019, I counted steps and I counted calories. I also made the arrangements for the trial of a spinal cord stimulator (scs). A psychiatrist completed the psychological evaluation required before the trial. My pain management specialist agreed to conduct the trial and we set a date. Everything was going along smoothly. Then a set of new but familiar symptoms flipped my script.

On January 30, 2019 these symptoms sent me to Patient First, an urgent care facility. Laboratory tests indicated that I had a urinary tract infection. The need for antibiotics required that my spinal cord stimulator trial be postponed. The infection was a reminder of a kidney birth defect, another surgery, and a very dark period in my life. I felt deflated. When I returned home, I climbed into bed and went to sleep.

I awoke to a voice describing a life of full body pain and limited mobility. I immediately identified with the speaker and continued to listen. When I opened my eyes, I had a very up-close-and-personal view of a human being who was obese in the extreme. The auto-play function of Hulu had taken me to My 600-lb Lifehttps://g.co/kgs/YxKGV. When the scene shifted to Dr. Nowzaradan’s consulting room, I knew that this could be a meaningful viewing experience.


How Y’all Doing?’

Watching Dr. Nowzaradan and his patients reinforced my commitment to resist the barriers to physical activity. I needed this reinforcement because my brain and my mind hold two very dissonant cognitions about movement. My brain is constantly receiving the message that movement is both painful AND dangerous. This is not a message that I can ignore because it is true. I have the falls, the fractures, the concussions, and the surgical scars to prove that this is the reality in which I live. The pain signals that reach my brain are not delusions.

The compression of nerve roots in my lumbar spine produces pain, weakness, and numbness in my lower back, buttocks, thighs, legs and feet. Since my last surgery, my right leg no longer collapses unexpectedly. However, it has not fully recovered and my brain, wisely, does not trust it. I cannot walk and chew bubble gum at the same time. Every step, every foot placement requires the active participation of a brain that has been traumatized on multiple occasions. Unfortunately, the brain, my brain, now insists that the proper course of action is to find a comfortable position and stay in it. My brain is a strong advocate for a sedentary lifestyle.

I am not naïve enough to consider being sedentary as a long term solution. I have 62 years of personal experience in coping with chronic pain. I know that my brain can exaggerate and sometimes lie to me. I have a master’s degree in health and nutrition education. I am a lifelong learner and continuing education is something about which I am passionate. I also have a mind that tends toward the rational. That mind, my mind, knows that physical activity is essential to life. At this point, my logical mind believed that if I did not move more, I would become sicker and die sooner than expected. I needed a specific type of push to break free of the uncomfortable dissonance produced by the contradictory cognitions held by my brain and my mind.

Dr. Nowzaradan and his patients provided the inspiration that I needed. Dr. Nowzaradan encourages movement using a rational approach that resonates with me. When his patients explain that movement causes pain, Dr. Nowzaradan’s response is “So what?” I have been adopting that approach to negotiate an amicable agreement between my brain and my mind.

When I first bought my step counter I was taking between 200 and 1200 steps per day. Two weeks of binge watching My 600-lb Life and my average was up to 3000 steps per day. Occasionally, I reach 6000-7000 steps in a day. This is acceptable progress for a 72 year old woman coping with multiple autoimmune diseases, lumbar radiculopathy, and a problematic kidney.

The bargaining starts every time that I stand up. My brain is uncertain that my legs will support me. It anticipates a fall with every step. My mind fights the prediction of catastrophe. I can only reach about 2000 steps before the peace talks between my brain and my mind break down. At that point I must sit and recover before moving again or the brain will make its prophecy self fulfilling. If you don’t understand how that works, I can’t help you.

Taking steps then resting several times throughout the day, requires a commitment to time and planning. It also requires that I give up some of those activities that promote a sedentary lifestyle. I just don’t have time for them.

I have an appointment for a CT Scan and a consultation with my kidney surgeon in late March. In the weeks leading up to that appointment, I need to move. As a 72 year old adult with chronic illnesses, I need to be as physically active as my abilities and conditions allow. I have definitely been inspired by Dr. Nowzaradan and his patients.

How many steps per day are enough? https://www.verywellfit.com/how-many-pedometer-steps-per-day-are-enough-3432827

ADDITIONAL RESOURCES


Sit Less, Get Active
https://www.coursera.org/learn/get-active


Physical Activity Guidelines for Americans
https://www.hhs.gov/fitness/be-active/physical-activity-guidelines-for-americans/index.html

SMART Goals
https://www.mindtools.com/pages/article/smart-goals.htm

Fitbud Step Counter
https://sites.google.com/site/smartdigitalsportpedometer/3dfitbud-simple-step-counter-walking-3d-pedometer-with-lanyard-a420s-black

Hashimoto’s, Antidepressants, and My Philosophy as a Health Educator

 

THE HASHIMOTO’S EXPERIENCE

I was born with a genetic predisposition for thyroid disease. I knew this before I saw reports generated by analyses of my DNA. Both my father’s mother and my own mother had thyroid disease. My paternal grandmother’s goiter is clearly visible in the picture below. I saw my mother’s goiter with my own eyes but have no pictures from that period of her life.

 

As a child I hypothesized that their goiters were the result of insufficient levels of iodine. (Yes, I was that child. I spent my early childhood in a segregated community in the U.S. South without routine access to physicians.  My maternal grandmother was a healer. She allowed me to follow her around until I started asking inappropriate questions about sexual and reproductive issues. I paid attention. I think this is where I was introduced to the value of traditional knowledge and self-care. The more I learn from modern medical science, the more I know that my grandmother was a brilliant woman, even though she thought my curiosity about reproduction required an exorcism.)

 

My own experiences, as I spent decades coping with undiagnosed and misdiagnosed thyroid disease, do not support the “lack of sufficient iodine” hypothesis. Those were very difficult years characterized by a wide array of painful and energy draining symptoms. My thyroid disease was not diagnosed until the gland stopped functioning, knocked out by a medication prescribed for a condition that I do not have.

Hypothyroidism (underactive thyroid) https://www.mayoclinic.org/diseases-conditions/hypothyroidism/symptoms-causes/syc-20350284

Many people with lupus have stories about the horrors they experienced before being diagnosed correctly. My initial lupus diagnosis came quickly. My horror stories revolve around years of undiagnosed and misdiagnosed Hashimoto’s Autoimmune Thyroiditis. I lost my left knee to Hashimoto’s at age 40. But the most nightmarish part of the experience was being misdiagnosed with bipolar disorder when the changes in my energy levels and moods were in fact caused by the Hashimoto’s.

Is it Mental Illness or Hashimoto’s Diseasehttps://www.holtorfmed.com/mental-illness-hashimotos-disease/.

These experiences also highlighted my genetically based hypersensitivity to antidepressants. Several years ago, decades after I knew better, I succumbed to pressure from a pain management physician to try Duloxetine as a treatment for neuropathic pain. I expected to experience a brief period of hypomania which would convince my physician that it was not a good idea for me to take the drug.

Duloxetine https://www.webmd.com/drugs/2/drug-91490/duloxetine-oral/details

Instead, the side effects were devastating. Not only did I experience a very unpleasant period of hypomania. I also experienced lightheadedness and a loss of balance. It was during this process that I fell and traumatically injured my brain. Even though I went to urgent care the day after my fall, it was more than a month before my traumatic brain injury was diagnosed.

Traumatic Brain Injuryhttps://www.mayoclinic.org/diseases-conditions/traumatic-brain-injury/symptoms-causes/syc-20378557

Then I tried stopping the medication. The effects of Duloxetine withdrawal sent me into a life altering downward spiral. The “brain zaps” hit me hard. I reached out on Facebook. Instead of offering me help, most of my friends and relatives ignored me. A few made fun of me. (BUNDLE UP CHILDREN: SOME OF US LIVE IN A COLD, COLD WORLD).

Cymbalta Side Effectshttps://www.drugwatch.com/cymbalta/side-effects/

The physician who had prescribed the medication told me that what I claimed to be experiencing was impossible. He lashed out at me by telling me that I needed a psychiatrist. Since I am always open to that possibility, I called the psychiatrist who had been with me through the process of establishing that what appeared to be a mood disorder was in fact an autoimmune disorder of the endocrine system.

My former psychiatrist returned my call even though he was retired and was in the process of closing his office. His response was empowering.

“Ann, you do not need a new psychiatrist. You need a new pain management physician. You are an intelligent woman. No good physician is going to ignore what you have to say about your own medical history.”

I decided to tough the withdrawal out on my own. After talking to my daughter, who works in a microbiology laboratory, I bought myself a set of Norpro Mini Stainless-Steel Measuring Spoons – http://amzn.to/2MN7x2E and some Micro Scoops – https://amzn.to/2IgVFCV.  While dealing with a traumatic brain injury, the side effects of Duloxetine, and Duloxetine withdrawal symptoms, I used these tools to titrate off the drug by gradually removing beads from the capsules.

One of the things that I learned from this experience is to never take drugs prescribed by a physician who has not thoroughly studied and accepted  my medical history. This experience has also played an important role in the philosophy that I bring to my work as a health educator. I believe that people should know as much of their family health history as possible. They should be able to present that history in ways that health care professionals must respect. And they should be able to provide themselves with appropriate self-care. Maybe they need to consult with someone who has a graduate degree in health and nutrition education and some first-hand experience.

MY GOALS AS A HEALTH EDUCATOR

To assist people with claiming their own health history.

To assist people with understanding the value of appropriate self-care.

STILL CARING FOR MYSELF

My health history dictates that each morning, as soon as I climb out of bed, I take my thyroid hormone replacements. The failure to take them has such severe repercussions that I have put a great deal of effort into building this habit. I require a replacement for T3 as well as the standard prescription for T4. And of course, I have my favorite books.

Why Do I Still Have Thyroid Symptoms? When My Lab Tests Are Normal: A revolutionary breakthrough in understanding Hashimoto’s disease and hypothyroidism 

 

Stop the Thyroid Madness: A Patient Revolution Against Decades of Inferior Treatment

 

GRATITUDE AND COMMITMENT TO TRUTH

I still have pain and fatigue. I visit an ophthalmologist for routine hydroxychloroquine toxicity screenings. That is why my cataracts were diagnosed prior to surgery and why I was recently lectured on the need to provide better care for my dry eyes. Sjogren’s adds to the pain and fatigue and to steps in the daily routine of self-care.

However, given that I was born with several skeletal defects and that my genetic propensity for autoimmune diseases was triggered in 1956, I am grateful to still be alive, upright, and moving under my own power. This has been a life long war. I survive by confronting the issues realistically. I will not be bullied into a conspiracy of silence and denial. I will not be seduced in telling lies. I will speak my own truth.

If you think that every mention of pain is indicative of powerlessness, failure, and negativity, I could probably help you too.