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

Advertisements

I Took a Morning Walk

Almost

Today, I took “one third” of a morning walk. I am pleased, in fact ecstatic, with the progress that represents. I am trying to climb out of a deep physical hole, one more time. My autoimmune flare was a devastating experience. I felt as though I were going to die, even though I knew I was not. That flare took me, into the pits, physically.

The flare started in my mouth and for weeks I could not eat solid food. I dealt with that by relying on my Vitamix blender.The fatigue and muscle aches and joint pains were combined with sharp blinding headaches.

The flare was complicated by the fact when the first headache hit, my brain stopped sending signals to my limbs. I fell. I damaged my left knee. It is a complex structure including a metal and plastic prosthesis, a bone graft, and cerclage wiring which is now partially broken into tiny pieces.

This structure did not appreciate slamming down on a concrete subfloor covered by a thin layer of carpet. In addition, I sprained two toes on my left foot during the same fall. That left me without a (good) leg to stand on. (That’s a joke, smile).

Once the flare remitted, I started the process of rehabilitation, again. I tried going to aquatic physical therapy but we could not make the timing work. I am doing my rehab program in the instructional pool on my own. I know what I am supposed to do. The challenge is showing up and putting in the work.

I have not been bedridden. I have obtained and prepared my own food from the start. I sometimes go out to shop for groceries and to pick up my medicines. There are numerous supermarkets within my driving range. However, none of them offer items like “grassfed beef bones.” These l have delivered.   Once I was mobile, I started to going to the pool. I love the pool. 

Still, I missed my morning walks. So today I gave it a try. I am weak. I have lost much of the strength and muscle mass that I developed during my last rehab effort. I am in pain. Both legs are problematic. I waddle and limp. I can’t find a lack rhythm for my stride. There is no cadence that works for me. Nevertheless, I walked for 20 minutes. I consider that an accomplishment.

In addition to physical activity, I have been paying attention to nutrition. I have not strayed far from the Autoimmune Protocol (AIP). Homemade bone broth, cooked in an instant pot is an extremely important part of my recovery.

As hurricane Florence threatened Virginia, I experimented with cooking a whole chicken in the instant pot. I loved it. Today I ordered another whole free range chicken from Whole Foods. Free range chicken is expensive. However, I use every part of the chicken. I waste nothing. They were out of stock. I will search stores closer to me to find the best chicken available. I will continue to do the best that I can to eat clean.

I am trying to increase my strength, flexibility, and overall wellbeing  I am coping more effectively with stress than before the flare. I am engaged in the appropriate spiritual and religious activities. I am engaging in appropriate physical activity. I am eating an appropriate diet.  

I am celebrating my 72nd birthday day by starting the rehab process over again. I have started over again many times since my first autoimmune diagnosis 62 years ago. The birth defects have increased the difficulty level. Yet, I persist. To persist is my nature. I am not responsible for the outcome. I am responsible for the effort. Today I made an effort to walk. I am pleased by the effort. 

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

Lupus Remission: Calming the Wolf

“From my perspective it seems that each person who has lupus starts from a different point and follows a unique set of pathways in developing lupus.” Thomas, Donald E. 2014. The lupus encyclopedia: a comprehensive guide for patients and families. Baltimore: Johns Hopkins University Press.

I was asked to explain how I arrived at a place where analyses of my blood find none of the abnormalities associated with lupus. According to the Lupus Foundation of America, the word “remission” is appropriate in this situation. I am “in remission on medication.” I take hydroxychloroquine and at present have no symptoms that can be seen solely as manifestations of lupus.

The Wolf that was once tearing my life apart is now resting quietly at the foot of my bed. I believe that the Wolf is quiet because I took charge of my health. I took charge of learning and doing what was best for me. I learned that many of my most painful symptoms were not caused by lupus. These symptoms were being caused by structural defects with which I was born. I learned to recognize what triggered lupus flares (an increase in the frequency and intensity of symptoms) in me. I learned to protect myself from the triggers. I avoid them or mitigate them impact.

Remember, this is my narrative. It is an attempt to describe my unique pathways. The uniqueness of each person’s experience in developing lupus is part of its continuing mystery. It is this uniqueness which makes lupus so difficult to diagnose and to treat. It is also this uniqueness which means that those patients who take charge of the disease(s) manifestations in their own life fare the best. We follow a unique set of pathways in developing lupus and we need unique, even if overlapping, pathways to remission.

DOES EVERYONE WITH LUPUS GO INTO REMISSION?

This is another question that the Lupus Foundation of America answers very clearly. The answer is a resounding “NO.”

https://resources.lupus.org/entry/does-everyone-go-into-remission

This is the paragraph which best describes my experience over the past 50 years.

“In some people, lupus will flare, become inactive (quiescent), and go into remission—this course of the disease may or may not occur regularly throughout their life.”

I understand that not everyone shares my experiences. I experienced my first autoimmune/chronic inflammatory disease, rheumatic fever, at age 10. My first serious lupus flare occurred after the birth of my first child, more than 50 years ago. The frequency and intensity of my lupus flares decreased after menopause. This indicates that in my case the sex hormone estrogen played a role in the severity of lupus.

Unfortunately, the years leading up to menopause were very difficult because none of my physicians recognized that I was also dealing with Hashimoto’s Autoimmune Thyroiditis.

By the time the hypothyroidism was diagnosed, both my thyroid gland and my ovaries were no longer working. I had also learned to identify other things that triggered lupus flares. These triggers arouse the Wolf in me.

 

WHAT TRIGGERS LUPUS FLARES IN ME?

Photosensitivity

I am extremely photosensitive. I am even sensitive to the UV from florescent lights. The sun is my enemy. I avoid it and protect myself from its UV rays as though my life depends on it. It does.

https://resources.lupus.org/topics/photosensitivity

Because I avoid exposure to UV, I MUST SUPPLEMENT VITAMIN D.

Barometric Pressure

I am also extremely sensitive to changes in seasons and weather patterns. The change from winter to spring and the change from fall to winter is traumatic every year. As a small child, I lived in a rural community where older people spoke of the impact of changing weather as “the rheumatism.” They did not have a physician who was a rheumatologist. I do.

I am especially sensitive to changes in barometric pressure. A change of 10 millibars can knock me off my feet. I live in the mid-Atlantic and once winter has finally changed into spring, I watch the weather reports and prepare for the summer storms as another matter of survival. I have barometric pressure apps on all my mobile devices.

When a “big storm” comes, I am going down. The electrical power will also go down. The first question is will I have all the supplies that I need until I am once again mobile. Needs include water, food, and medicine. The second question is do I have appropriate amusements. I like to keep my gas tank full because my automobile is a giant battery charger.

Other locales present other problems. I have lived in: Chicago (too cold), Southern California and Arizona (too much sunlight), the Gulf – of Mexico- Coast (too much sunlight and much too close the summer storms). People with lupus are sensitive to weather patterns. As my son announced at age three, “Where ever you go there is weather.” If you have lupus and you want to have a life, you must adapt to the weather patterns of the area in which you live. You must pay attention to them.

Foods

There are foods and food additives that increase my lupus symptoms. I avoid additives by avoiding packaged and processed foods. I consider much of what is sold in supermarkets to be manufactured food like substances, rather than food.

Like most people, even those without lupus, I feel better when I eat a nutrient dense whole foods diet. I have a strong preference for traditional dietary styles.

Before the rise of 24 hour minimarts, vending machines, and fast food delivery, traditional diets rooted in wholesome, seasonal ingredients nourished families all around the world. https://oldwayspt.org/traditional-diets

I know, however, that I am sensitive to some foods that are included in my preferred traditional nutrient dense diet. Attempting to identify the foods that most impact my health, I recently completed the elimination phase of the Autoimmune Protocol.

I am following the work of Dr. Sarah Ballantyne – The Paleo Approach: Reverse Autoimmune Disease and Heal Your Body. Dr. Ballantyne believes that the Autoimmune Protocol will help people with lupus in several ways including increasing their energy. I think most people with lupus are looking for ways to stop being so tired all the time.

Sedentary Lifestyle

When I am forced to stay in the bed or to only move between my bed and a chair, the Wolf becomes unruly. I need exercise. Over the years, I have spent a great deal of time in physical therapy. When other people say that they are going to the gym, I am most likely headed out to work with my therapist.

Outside of physical therapy, I love the swimming pool. I would rather be at the beach. However, I am photosensitive. So, I get into the pool and visualize myself in the warm clear waters of an Island Paradise. I have been out of the pool for a while now. But getting back to the pool is one of my goals.

I am working on achieving that goal with the simplest exercise of all. I go for walks. I am five months post spine surgery and simply taking a walk is both demanding and satisfying. I tend to go for my walk around 6:00 am. In late May and early June, it is already light outside, but the UV rays are not yet prohibitive. Every step that I take is a battle. I am fighting this battle and I plan to win.

Stress

My other major trigger is stress. I have spent years studying stress and learning how to break the stress cycle. I have taken classes, participated in workshops, and worked one on one with teachers and therapists. I have skills.

Like everyone else in the world, I often find myself dealing with the “fight or flight” response. I often fight. Sometimes I flee. When I can neither fight nor flee, I (try to) FLOW. I FLOW through meditation, visualization, and expressive writing.

I FLOW into the kitchen. I love to cook.

I FLOW into reading. I love to learn. Learning helps me to take charge of my health.

This has been my pathway to remission. It has taken me years to calm the Wolf. I work very hard to keep her (Yes, she is female and alpha) quiet because I have other health issues with which I need to deal. Right now, lupus is not biggest problem in my life. It would only take one “quick trip to the store” without appropriate UV protection to change that. If I get distracted and start wandering around the farmers’ market, I could end the day hospitalized.

Doctors who care deeply about their patients know very well that it is the patients who take charge of their diseases who fare the best. Thomas, Donald E. 2014. The lupus encyclopedia: a comprehensive guide for patients and families. Baltimore: Johns Hopkins University Press.

Most of my posts have some connection to my journey through life as a person dealing with autoimmunity. I plan to connect the dots, eventually. I cannot say everything about my journey in a single post. Please be patient with me.

If you have specific questions, I will gladly point you to resources that offer answers. You can respond to this post in public or you can message me for a private conversation. And remember, I would love to hear your story. I would love to learn of the unique pathways that lead you into the lupus maze and how you plan to find your way back out. What awakened the Wolf in you? How do you calm the Wolf in you?

 

The Alternative Hypotheses – Denial Ain’t Just a River in Egypt

My first attempt to test the new hypothesis involved increasing the dosage of the anticonvulsive medication gabapentin – https://www.drugs.com/gabapentin.html. There was no change in the pain level. This means seriously considering the alternative hypothesis of hip arthritis – http://www.orthoinfo.org/topic.cfm?topic=A00213.
In fact, the last words that my pain management specialist said to me were, “You know you have osteoarthritis.” I also know that denial ain’t just a river in Egypt.
Confronting osteoarthritis of the hip means dealing with my orthopedic surgeon. He will ask me, “Ann have you considered exercise?” He won’t have time to consider the fact that I was exercising when this cascade of events started. He does not show respect for exercise done in water. I, on the other hand, hit my physical limits by taking two intensive deep water classes back to back.
Over the past six months I have completed two courses of physical therapy. I have progressed from a right leg that was collapsing to a person who can stand on both feet, even if painfully. No amount of physical effort on my part will be considered sufficient by this physician.

He will also throw a several rapid fat shaming jabs and make other comments that land like body blows. Even though I don’t appreciate his insensitive comments, I promise not to take them personally this time. I definitely appreciate him when I am unconscious. He is an excellent surgeon. I am very pleased with the outcomes of the knee replacement surgeries that he performed in 2001 and 2003. If my hip joint must be replaced, I want him to do it.

I am playing phone tag with his office. I was offered an appointment on Thursday but I could not accept that one. In my world, neurological specialist get the first crack at me, then the orthopedist.
It may not be one explanation or the other. It may be both/and.
This is going to be a very educational ride.

PT Update – A New Hypothesis

My right innominate bone is now back in a neutral position. I really appreciate the knowledge and skill of the physical therapist who designed the program to make that happen.

PT-1

 

My current goal is to be back in the pool as soon as summer camp ends and the kids are back in school.

Working with Linkonis  I have become stronger and more flexible. He has also helped me to understand the next step that I must take in order to achieve my goal. He helped me to phrase the question that I must ask when I meet with my neurologist and my neurosurgeon next week.

 

The ability to ask the right questions and to describe symptoms is an important factor in getting the correct diagnosis and appropriate treatment. I have been dealing with this particular problem for at least 20 years. Unfortunately,  I am complicated and other symptoms have always interfered with my ability to describe this problem accurately and to ask the right question.  This means that I am very excited!  This could be life changing.

 

Last winter I exceeded my limitations by taking two intensive deep water aerobics classes, back to back. At one point my right leg was collapsing. That was scary enough to send me to aquatic physical therapy.  The therapist with whom I worked in the pool commented that I seemed to know more about anatomy than most of his patients.  That is probably true.

 

I have  been fascinated by the human body as long as I can remember. Some of my most memorable  early childhood “switchings” were prompted by questions about human reproduction. My grandmother was convinced that my questions about how women got pregnant and where babies were carried in the body came from the devil. This was especially so when I refused to accept water melon seeds and the stomach as correct answers

 

As a 10 year old recovering from rheumatic fever I had plenty of time to look for answers in  books. I came to understand that one possible complication of rheumatic fever is mitral valve prolapse. I convinced one of the neighborhood butchers to give me a cow heart to study. I can still hear my mother screaming when she discovered the partially dissected heart in the bath tub (she screamed even louder at a later date when she found the planaria in the refrigerator). After that I kept all dissections and biological experiments away from home.

 

The rheumatic fever did not damage my heart. It did set off a cascade of autoimmune diagnoses, starting with lupus erythematosus. My primary interest then shifted to the human immune system. Before I could take university courses in immunology, I had to complete the prerequisite course in basic human anatomy and physiology. This course was my first opportunity to dissect a human cadaver.

 

Because of my research interest  in birth outcomes, I studied the human reproductive system as well as the immune system and I am still fascinated with the interaction and interdependence of these two systems.  I will definitely discuss this interaction in a blog on  how vitamin D sufficiency improves birth outcomes.

 

The last formal human anatomy and physiology course that I took was a required course in the health and nutrition education program that I completed in 2014. The major focus of that course was the digestive system and its influence on the other systems of the body  However, my own body has continued to provoke study of both autoimmune/chronic inflammatory conditions and musculoskeletal issues.

 

I am not an MD, OD, or Doctor of Physical Therapy. I am a medical sociologist, health educator, and patient advocate. I definitely know a “little sumpn sumpna” about how my body works. Over the decades, I have also learned that I am responsible for my own health and wellness. That is why the  lupus is in remission and I get to focus on other issues.

 

I do not approach health care providers passively.  It is my body. It is my heath. They have been hired to help me. I am entitled to an informed opinion. I also believe that if I can help my physicians solve the complex puzzle of my chronic pain issues  I can help other people do the same!

 

After working two physical therapy programs in 2016, I believe that the pain my brain is communicating to me about most strongly is neurological in origin even though the symptoms are musculoskeletal.  I even have a specific  hypothesis. I believe that the origin of these symptoms is the ilioinguinal nerve. I am not self diagnosing,  I am simply hypothesizing.

iliolinguinal nerve

 

Next week I will present my symptoms and questions to my neurologist and neurosurgeon.  They will offer their own hypotheses and then there will be a test.  I will let you know if their hypotheses are congruent with mine and the results of the tests.

 

Every time we test an hypothesis,  I am optimistic that this time we are right. Sometimes we are and sometimes we are not. It is always a team effort and I am a member of the team. In fact, I am the captain of the team.

THE ALTERNATIVE HYPOTHESIS IS ARTHRITIS OF THE HIP. I AM NOT READY FOR THE HIP REPLACEMENT!!!!

 

 

Physical Therapy Update

On Friday, I was congratulating myself for the successful completion of one week with my new physical therapist. Then he informed me that he had taken it easy on me the first week and intended to increase the intensity next week. I spent much of the afternoon “freaking out” about that and today I am trying to approach the situation from a calmer, and perhaps even more professional, perspective.

The pictures below show a healthy lumbar spine and pelvis. Needless to say, mine don’t look like that.

https://us.fotolia.com/Sebastian Kaulitzki

https://us.fotolia.com/ Sebastian kaulitzki

 

I generally express my complaint as “pain in my right sacroiliac joint caused by a ‘wonky’ pelvis.

ANTERIOR ROTATION OF THE RIGHT INNOMINATE 

ANTERIOR ROTATION OF THE RIGHT INNOMINATE

A more appropriate description would say that I am dealing with right sacroiliac pain as the result of anterior rotation of the right innominate.

I have been living with this pain since Friday, September 13, 1996 when I fell crossing Franklin St. at the intersection with Shaffer St.

That fall and the subsequent pain changed the course of my life. It took more than 10 years for me to get a referral to a physician who could listen to my description and say, “I know what that is. It is your sacroiliac joint.”

While waiting for the correct diagnosis, I spent plenty of time with orthopedic surgeons, who replaced both of my knees and assured me that all of the pain in my back was the result of spinal stenosis. When I begged for a referral to an interventional pain management specialist, my knee surgeon responded with, “Ann, get a life.”

Once I finally got to the pain management physicians, we worked our way through several factors that contributed to my back pain. There was a problem with my left kidney that was surgically corrected in 2009. I got some relief from the pain of stenosis through a 2011 back surgery. The sacroiliac joint pain has been treated with ablation of the sacral nerves and with steroid injections. The limited relief from these is not long lasting.

At the start of July 2016, I was on the phone with my pain management physician pleading for steroid injections. Once on the procedure table, I asked him for a referral to a physical therapist who could really help me with my “wonky pelvis.”  I think that this guy is the one, finally. So, I am ready for whatever he wants to try.

I am sure that someone will ask why anterior rotation should be so painful. Clearly, it places stress on a joint that is not supposed to move that much. I expect that there are some arthritic changes in the sacroiliac joint.

There are  numerous muscles that attach to  each aspect of the pelvic bone. The rotation causes problems for each of these muscles (the glutes, hamstrings, quads, the adductors, and the abductors and of course the hip flexors that objected so strenuously to my deep water work). The imbalance also impacts the corresponding muscles on the other side of the body.

There are also numerous nerves that run around and through the pelvis. Most people my age have experienced at least one “bout” of sciatica. My bout has lasted for 20 years.

I believe that relief is possible and that even if the pain continues, I will have increased mobility if the right innominate can be returned to a neutral position.

I need to be able to get into the deep water without my hip flexors going into spasm. I need the cardiovascular boost and the metabolic boost. I need the “feel good”chemicals that my brain makes when I push through the wall. Without them I am a really grumpy old woman.

I am gonna do my physical therapy homework. I think this therapist is on the right track and he will get nothing but my best. He has no idea how I am driven. He has no idea how I am persistent.

He will get an idea.

 

FROM THE BIG POOL TO THE THERAPY POOL AND BACK AGAIN

In case you have not figured it out yet, there is a rhythm to my life that involves experiencing some type of physical trauma and then trying to figure out what damage was caused, how and why it was caused, and then if and how it can be healed.

 

In December I finished an intensive deep water aerobics class (it was actually two classes back to back) and the next day I experienced so much back pain that only years of experience allowed me to get out of the bed. Then I discovered that my right leg collapsed when I walked. This situation required prayer, meditation, reflection, decision making, and finally action.

 

It had already been established that my hip flexors are weak and I had started a program to strengthen them. The pain in my back was my body going “Whoa! This is not going to work for you.” A little tiny voice inside my head kept saying “surgeon.” I refused to listen to it. Instead I went to see a chiropractor and my pain management physician.

 

The chiropractor took x-rays and said “scoliosis.” I was reminded that “denial is not a river in Egypt” and I can be surprised by a diagnosis that I was given as a teen for a condition with which I was born. I tend to talk about my leg length discrepancy rather the spinal curvature responsible for it. When I went to see my pain management physician, who is also a neurologist, I asked him if he wanted to see the x-rays. His response was, “I’ve seen your MRIs.” He had a huge grin on his face that read “Aquilla you are an idiot.” He likes my middle name. He does not accept new patients without seeing their MRI.

 

The chiropractor prescribed electrical stimulation and manipulations over six weeks. During the second week he released a trigger point in my left quadratus lumborum (QL) creating a feeling of relief that I will never forget. My pain management physician was initially at a loss because there was no place for an epidural steroid injection. Then he decided to supply a powerful NSAID and a powerful muscle relaxant. This was a replacement for other medications rather than additional meds. My pharmacist earned gratitude by reminding me to discontinue the meds that were being replaced.

 

 

I expect to get kicked out of PT on Wednesday. On Monday the therapist pointed out that I was working hard enough to get aerobic and that I was the only PT patient working at that level.  I need a trainer. I cannot afford a trainer. Friday will be my last day with the chiro. On Monday I will rejoin  one of my deep water classes, the less intense of the two. My attempt to get stronger will continue. This is definitely my battle.

 

Through this experience, I learned and relearned a lot of things about this body in which I live. Now, I will try to apply them to my life and to my exercise routine. Even though two members of my healthcare team told me that I no longer need a lift for my shorter leg, I do. I need less height in the lift but I definitely need a lift.  I also need exercise to keep my metabolic system performing within normal parameters. Yes, keeping diabetes at bay and my blood pressure out of stroke range is most definitely my battle.

 

I have been keeping up with my seminar and have even started planning a new one. Every other project is behind schedule. WAIT A MINUTE! I am retired. Except for the seminar that I am facilitating, I have no schedule. I am still disorganized from the move. Three months on crutches did not enhance my downsizing and decluttering capacity. My major goal for today is to get the pineapple off the kitchen wall.

 

I may need to put a note on the still new juicer to remind myself how far it can fling bits of fruit and vegetables when I don’t wait for it to stop spinning. That juicer and I are going to become great friends. Consuming more vegetables and fruits is also an important part of my battle. The juicer is an important weapon in the battle.

Every other project that I have discussed is on an “I’ll get to it when I get to it” list.