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

Saving My Own Life First

 

I love to walk, even when it hurts. And when it hurts, I am going to say that it hurts. It is simply an empirical observation. It is not always possible for me to walk the outside paths that I prefer. Then I exercise inside. I am developing a long term and somewhat intimate relationship with a stationary bike. That relationship has been influenced by the body mechanics of cornerbacks.[1]

Cornerbacks

My recent interest in cornerbacks came from a YouTube channel which presents comic exaggerations of those who play various football positions.

 

Watch “CORNER BACKS BE LIKE..” on YouTube

 

Eventually it “clicked in” that I found the backpedaling of cornerbacks so fascinating because of what it demonstrated about the working relationship between the muscles that act on the posterior aspect of the thigh and those that act on the anterior aspect. I switched to viewing videos of great cornerbacks[2] and then to younger ones being trained to back pedal

Watch “Football Tips (Defensive Back): How To Back Pedal” on YouTube

 

For two decades physical therapists have noted that my hamstrings are over developed in relationship to my quadriceps. The imbalance is usually in the other direction. None of the programs that physical therapists designed for me solved my imbalance issue and some even lead to injuries.

I believe that the problem starts with the scoliosis and leg length discrepancy combined with a really “wonky” pelvis. I also think that the structural defects in my lumbar spine and the damage they have caused to nerves play an important role in what is going on in my legs. The nerve damage which has atrophied the adductors in my right thigh, also plays a role in the weakness of my quads. Of course, knee replacement surgeries have played a role. When surgeons take you apart you may find yourself in “Humpty Dumpty” land and never properly put together again.

I have now been to physical therapy so many times that I know what I need to be doing at this stage of my rehabilitation. I am not minimizing the importance of those who have earned the title Doctor of Physical Therapy. I am saying that the last time I started what was supposed to be an eight-day program they kicked me out after day three. They simply told me that since I already knew the program, I should work it on my own. That is what I am doing now.

I think it “rocks” that I can approximate the stance required from a backpedaling cornerback. It is like the ¼ squat that was on the list of exercises given to me by my home care physical therapist a few days after my last surgery. Check out the ¼`squat and compare it to the initial back pedal stance of cornerbacks.

Watch “1/4 Squats to Regain Knee Strength After an Injury” on YouTube https://youtu.be/bhv871C66wI

We started those ¼ squats with me holding onto the kitchen counter. I put in the work and I got stronger. It is now a standard part of my morning workout with no chair or counter top required. Yes, I include ¼ squats and other movements during my morning walk.

The back pedal is more of a challenge. However, I do add a few back pedals and shuffles to my morning walk. Defensive back exercises improve not only muscle strength but also balance and agility. My hamstrings are still doing most of the work. That is why on the bike, I  backpedal and dream of being a great defensive back. I DO NOT TRY TO TURN AND ACCELERATE. I am imaginative, not totally insane.

In my fantasy life, I am a Mike Singletary quality middle linebacker. That is why I sometimes take down offensive people without a second thought. You offend me, I sack you. It is just that simple. Bye. I am fighting for my life. I don’t have the energy to deal with shade and snarkiness politely. Comeback when you are ready to be on my team, to offer me support and encouragement.

If the removal of the cyst allows the damaged nerves to regenerate, then my quads might start doing some of the work required to walk. I am responsible for the effort. The outcome is beyond my control.

GIRLTREK.ORG

GirlTrek.org is helping me to be inspired by “the baddest freedom fighter our country has ever seen.” I am only on step one. It is a step that requires honesty, openness, and directness. I am up to that part of the task. Inspired by Miss Harriet Tubman, I am saving my own life first.[3]

 

  1. My first undergraduate anatomy and physiology professor was a kinesiologist for the Chicago Bears. His approach to teaching this introductory course was to put 10 questions on the blackboard during the first class of the quarter and inform several hundred students that half of them would be on the midterm and the other half would be on the final exam. We were expected to learn the answers to those questions from the textbook and from the laboratory in which we dissected cadavers. Then he lectured on the what the Bears had done wrong in a game, with a strong focus on the quarterback. This delighted the students who were also required to take a kinesiology course with him. It gave them a leg up on those students who took intro with other professors. The physical education majors and pre-med students in the class were very competitive and always looking for a leg up. After all these years, I still can’t think of basic anatomical mechanics without thinking about football players.
  2. I am not providing a list because then someone will want to argue about their rankings and that is not the goal of this post.
  3. I AM NOT FLAKING OUT ON PAYING CLIENTS. While I work on saving my own life, I will continue to provide consultation services to paying clients.

 

My Morning Walks: Motivation, Goals, and Accoutrements

Introduction

Back pain as the result of a leg length discrepancy due to scoliosis and lumbar spinal stenosis forced my father to change his life during his mid to late 30s. Prior to that time, he had been an outstanding athlete both on the basketball court and with baseball bat. I inherited the painful structural defects in my spine directly from my father. I have known this since I was diagnosed with scoliosis as a high school student.


If you have a good eye for structural anomalies you can see our curved spines and leg length discrepancies in this 1957 photo taken at the bullfights in Nogales, Sonora Mexico.

What I did not learn until later in life is that early intervention could have dramatically reduced the negative impact of these genetic gifts on my overall health status. I want young people who find that they too have inherited these defects to understand the importance of intervening in the degenerative processes as early as possible. They may need to become proactive self-advocates long before physicians are concerned. Young people may need to remember that conventional medicine is designed to treat illness and dysfunction. They will require a more preventive approach to achieve wellness.

As I approach my 72nd birthday, I am grateful to have recovered some of my ability to walk. My morning walk is my favorite part of the day. I only measure the length of my walk in terms of physiological effect and time elapsed. I walk until I have worked up a good sweat and elevated my heart rate. Right now, it tends to be 40 minutes from the time I leave my dwelling until I return. My goal is to increase the amount of time that I can walk once my heart rate has been elevated.

I want to find the wall of my endurance and push through it until my brain rewards the effort with a “rush.” I know from experience that my brain manufactures the best “feel good” chemicals in the world and that is the pain relief that I am chasing. I know I have achieved that state when my internal sound track plays James Brown’s “I feel Good.” The purpose of my rehabilitation program is to change the frequency and intensity of the pain signals that my body sends to my brain AND how my brain interprets those symptoms.

Ready to Roll

I tend to sleep “ready roll” for walking. I roll out of my bed, wash my face, brush my teeth, take my thyroid hormones, grab my stuff and go. My “stuff” includes the right stick, the right shoes, the right music player, and the right mindset.

My Stick

I have a few sticks and trekking poles (in addition to several pairs of crutches and a few canes). I love what I call my “big stick.” It is beautiful and functional but not quite right for my current physical status and needs. These days I only go for aerobic walks in my neighborhood. Therefore, I have opted to use a lighter stick for help with balance, cadence, and to incorporate upper body movement into my walking routine. The wolf carving on the straight lighter stick is symbolic of lupus and serves as my reminder to behave in ways that keep the beast calm

 

 

My Shoes

Keeping the beast calm while using a footlift to compensate for the difference in the length of my legs, requires walking shoes with specific characteristics. I look for lace up shoes with a removable insole, extra depth, and a wide toe box. The Merrell shoes on the left have served me well and I am getting ready to put a new pair into the lineup.

Laces

The laces that come with new shoes are too long for this Lupangeezer. I often replace those laces with a brand that locks. Sometimes I simply lock the original laces, cut or burn them, and tie the ends into knots. On other occasions, I resort to the original curly no tie type of lace. The only thing that I do not do is trip on my shoe laces.

All Shoes Need a Lift

One of the most important things about wearing the footlift to reduce the shear on my right sacroiliac joint is that the footlift must be in place every time that I stand up. I cannot walk barefooted, and a lift must be inserted in every pair of shoes that I wear. This pair of Rocket Dog Stokers are my favorite house shoes. They are not great walkers, but they have the required removable insole. The wide toe box and elastic and Velcro closure keep me relatively comfortable indoors with the challenging concrete subfloor.

My Music

The music that I prefer for aerobic activities is already loaded onto the waterproof mp3 player that I use in the pool. I clip it on, push play, and I have four hours of music that I love, music that inspires me to move. I thought about adding an appropriate playlist to my phone but after a lengthy discussion with ALEXA about song choices, I realized that turning the phone off and adding it to the contents of my fanny pack was the best option.

My Mindset

I am more than a tad obsessed with the concept of walking. Since I started working on DNA genealogy and family history, I am fascinated by the fact that some of my ancestors walked from the coastal plains of eastern seaboard of the United States to the Mississippi Territory and beyond: the slavery trail of tears – https://www.smithsonianmag.com/history/slavery-trail-of-tears-180956968/.

This connection to walking motivated me to join GirlTrek.org http://www.girltrek.org/.

It feels as though the founders of this movement have read my heart, mind, and soul. So, even though I am stranded in my neighborhood and walking alone, I walk in communion with a group of like minded women. Harriet’s Handbook has become one of my most important tools. It provides inspiration. It adds the accountability that a person walking alone really needs. And it rewards the achievement of goals. I am documenting my first official Warrior Week.

My Goal

Sometimes my thoughts retreat into a more distant past, such as the development of bipedalism in early humans. Sometimes it starts flipping pages in anatomy texts trying to figure out what else I can do to compensate for the skeletal defects with which I was born. “Here there be dragons.”

Sometimes, I don’t need more information or more thought. I just need to walk far enough, long enough, and fast enough that my brain can handle no thought more complex than “I FEEL GOOD.”

Notes

  1. One day a new comer to the therapeutic pool at Sheltering Arms watched me go into a session really dragging (think “Nobody Knows the Trouble I’ve Seen”) and come out singing “Papa’s Got a Brand-New Bag.” She asked if the exercise had changed my pain level that drastically. I answered her honestly. “The pain has not changed. My brain just doesn’t care as much about it.” I am still moving my body through the pain to change the way my brain feels about it.

 

When One Leg Is Shorter, Redux

 

One of my legs has always been longer than the other. The difference in the length of my legs has contributed to low back and sacroiliac pain and dysfunction. It has also played a role in hip, knee, and foot problems. These challenges contributed to the centrality of the pool in my physical activity. In 5-10 feet of water a minor leg length discrepancy has little meaning.

My ability to enjoy the water came crashing to a halt in 2015. I had fallen and injured my left arm from shoulder to wrist, including the joints associated with the thumb. I also injured my brain in the fall. I was left swimming a one-armed backstroke, a very ugly and inefficient way to move through the water.

However, it was the violent spasms in my hip flexors that pulled me from the water. Moving through the water was difficult having only one arm that worked as expected. When my hip flexors stopped functioning, the process transformed into dangerous and impossible. STARTING IN 2015, I POSTED ABOUT MY EXPERIENCES WITH THESE ISSUES ON THIS BLOG SITE. These blog posts became my official memory as I worked my way through the traumatic brain injury. 

For more than a year, I experimented with continued epidural steroid injections and tried different forms of physical therapy. None of them helped and several made the problems worse. I am not speaking of pain alone. I am also speaking of loss of functional capacity. If I could not “push through pain” I would have died several decades ago. This time I had reached a point where I could no longer will some of my muscles to work. My right leg was especially troublesome. It would buckle and drop me to the floor without warning.

One of my physical therapy routines aggravated debris from broken surgical wire around my left knee replacement. I experienced a brief resurgence in lupus symptoms followed by a severe allergic reaction to dust mites and infections in my lungs, sinuses, and middle ear. I was out of circulation for several months.

Once I had calmed the inflammation and infections in my respiratory system, I took this new muscle weakness symptom to my interventional pain management physician and my orthopedic surgeon. They decided that the problem was one that required the assistance of my neurosurgeon. The cyst that was visible on the MRI indicated that they were correct.

The surgery was performed six months ago. There is no longer a cyst compressing my spine and my right leg is no longer collapsing. I still have the standard symptoms from the compression of nerve roots in the lumbar spine: numbness, burning, tingling. I also have the challenge of sacroiliac syndrome. I am, nevertheless, excited to now be working on my long term physical rehabilitation.

This rehabilitation effort starts with compensating for my leg length discrepancy. Compensating for the leg length discrepancy has long been my responsibility. My orthopedic physical therapist once exclaimed that this was more art than science.

In my case, the difference between the length of the two legs is small in size but large in effect. For me, the most effective method for measuring the size of the difference that needs to be corrected is found in “clearly adjustable” products. I use heel lifts and I use foot lifts

These lifts are “micro adjustable.” I will remove, or add, one layer at a time until I have identified the height that reduces symptoms in the right buttock, hip, and leg without producing symptoms on the left side.

I will work slowly. The damage to the nerves in my right buttock, thigh, leg, and foot has resulted in significant muscle atrophy. It can take another full year to determine if any of the damaged nerves have regenerated enough to allow the muscles to gain strength.

In the meantime, I will continue to work on keeping the lupus in “technical “remission. I will stop ignoring the symptoms of Sjogren’s syndrome, and I will eat to promote systemic and metabolic wellness.

Lupus is a large, dangerous, and mysterious wolf with whom I have been forced to share a life for more than 50 years. I think of keeping lupus in remission as “keeping the wolf calm.” To accomplish this, I must:

  1. Avoid Ultraviolet Rays both from the sun and from florescent lighting.
  2. Stay attuned to changes in weather patterns, including temperature, humidity, and barometric pressure.
  3. Cope effectively with stress.
  4. Exercise appropriately for weight, strength, and mood.
  5. Eat a nutrient dense whole foods diet with anti-inflammatory properties.
  6. Take my daily hydroxychloroquine.

Dealing with Sjogren’s requires everything in the list above, plus keeping my eyes appropriately moisturized. Taking hydroxychloroquine requires being screened for toxicity by an ophthalmologist at least once a year. I prefer to be screened twice a year. I was screened recently and got a lecture because my eyes were too dry to indicate that I had been taking care of them properly. I have received the message.

I am a health and nutrition educator. Selecting, preparing and eating health promoting foods are activities that I enjoy. Unfortunately, my ability to do so is impacted by pain and fatigue and sometimes even I find myself reaching for foods that provide a quick mood fix. To avoid these impulses, I must focus on eating a nutrient dense whole foods diet with anti-inflammatory properties. Yes, it is worth mentioning twice.

Having autoimmune diagnoses and congenital structural defects does not render me immune from the health problems faced by everyone else in my demographic categories. It is past time for a visit with my gynecologist and my colon and rectal surgeon.

Clearly, I have a full agenda. You are invited to come on this journey with me. As a health and nutrition educator, it will be my pleasure to have you accompany me