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?

 

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01 Vitamin D Winter: A Reminder

In order to reach my age with strong bones it is necessary to have a sufficient amount of vitamin D earlier in life.  In the Richmond metro area and in locales north of Richmond,  it is necessary to remember that the “vitamin D winter” starts in the fall.

 

Watch “VDWINTERSC1” on YouTube

 

In this short presentation several scientific concepts are mentioned: season, latitude, ultraviolet,  and vitamin. I found myself wondering at what grade levels should children be able to join in discussions of these concepts. I approached this question by looking at the 2010 Science SOLS.  I am building a table to illustrates which Science SOLS address each concept. I will post the table when it is complete. The concept of vitamin is not addressed in the SOLS. Latitude  and ultraviolet appear to only become important in high school science courses. However, students are expected to develop and understand the concept of seasons over the elementary school years, starting in grade one.

 

Creating an Online Vitamin D Workshop for Children and Parents

First Concepts

The Solar System

Watch “Exploring Our Solar System: Planets and Space for Kids – FreeSchool” on YouTube
https://youtu.be/Qd6nLM2QlWwMeet the Sun

 

Sol is our Sun

Watch “Here Comes the Sun: Crash Course Kids #5.1” on YouTube

Longitude and Latitude

Where are you on the earth?

How the Earth Travels Around the Sun

Seasons

Watch “Seasons and the Sun: Crash Course Kids 11.1” on YouTube
https://youtu.be/b25g4nZTHvM

The Electromagnetic Spectrum

Watch “What is the Electromagnetic Spectrum?” on YouTube
https://youtu.be/m4t7gTmBK3g

 

Ultraviolet

Watch “On ultraviolet (UV) rays” on YouTube
https://youtu.be/np-BBJyl-go

 

How We Make Vitamin D From Sunlight

Watch “How Does Our Skin Turn Sunlight Into Vitamin D?” on YouTube

 

Harness the Power of Sunlight

sun-infographic

http://campaign.r20.constantcontact.com/render?m=1102722411090&ca=3085d012-47db-458a-b8b4-d20b230016b5

SKIN TYPE MATTERS

http://archive.constantcontact.com/fs187/1102722411090/archive/1124671477902.html

MORE INFORMATION

GRASSROOTS HEALTH

http://www.grassrootshealth.net/harnessthesun

VITAMIN D COUNCIL

Home

UNIVERSITY OF CALIFORNIA TELEVISION

Vitamin D for Public Health – Integrating Sunshine, Supplements and Measurement for Optimal Health 2014

http://www.uctv.tv/series/Vitamin-D-for-Public-Health-Integrating-Sunshine-Supplements-and-Measurement-for-Optimal-Health-2014-817

ANCESTRY, ADMIXTURE, AND HEALTH DISPARITIES

My interest in the concept of “racial admixture” goes well beyond the personal. The concept has become important in health disparities research.

CLINICAL TRIALS

A search of the clinical trials database http://www.clinicaltrials.gov, using the phrase “racial admixture,” returned four results.

  • Admixture Mapping of Ethnic and Racial Insulin Complex Outcomes
  • Racial and Genetic Biomarkers of Response in Tissue Samples From Patients With Endometrial Cancer
  • Bad Genes or Genes Behaving Badly
  • Puberty Related Intervention to Improve Metabolic Outcomes (The PRIMO Study)

 

NATIONAL INSTITUTES OF HEALTH

 

A search of the National Institutes of Health Project Database using the same search term produced 41 results.

https://projectreporter.nih.gov/reporter.cfm

One of the projects most interesting to me is being conducted at Virginia Commonwealth University. One hypothesis being tested in this research is that both African ancestry and the admixture of European ancestry make a contribution to the preterm premature rupture of membranes that plays an important role in the higher rate of premature births among African American women.
https://projectreporter.nih.gov/project_info_description.cfm?aid=8906535&icde=29258566&ddparam=&ddvalue=&ddsub=&cr=29&csb=default&cs=ASC

 

VITAMIN D
A very different approach to the prevention of preterm births is supported by vitamin D researchers.

This week I am so honored to announce a new paper that clearly shows the >50% reduction in risk of preterm birth with a vitamin D serum level of at least 40 ng/mL from a randomized controlled trial done by Hollis and Wagner.
http://archive.constantcontact.com/fs187/1102722411090/archive/1122775944928.html

 

Medical University of South Carolina Leads the Way

EVERY new prenatal patient at the Medical University of South Carolina (MUSC) will now be screened for vitamin D deficiency, and, they will have recommended supplementation to get their 25(OH)D serum levels to at least 40 ng/ml as part of the GrassrootsHealth Protect our Children NOW! Project.
http://archive.constantcontact.com/fs187/1102722411090/archive/1122195152911.html

 

 

The Yoga Stretch Class Was an “Epic Fail”: Yet there is good news

AFTER AN EPIC FAIL, I FLED

After observing one yoga stretch class, I decided it was a better fit for me than the Pilates stretch class. I was wrong. First, from where I placed the mat, I could not see the instructor. Since I am not fluent in the language of yoga, I felt as though I had entered a class without the proper prerequisite. If this had been an academic course, I would have been out of the door in a flash. However, I had so much “gear” and it was so spread out that leaving would have been disruptive.

 
When I could see and/or understand the instructor, she was saying things like “child pose” or “downward facing dog.” In a previous blog, I discussed the limited flexion allowed by my prosthetic knees. It comes no where near being child’s pose. Since I had been working on my own to see if I could improve this situation, the knees and the bones of the lower leg, especially the tibia responded loudly to the in class attempts.  These protheses are expensive. They cost money, pain, and time. It is not in my best interest to engage in any activity that threatens to damage them. And of all my physicians,  my orthopedic surgeon is the one I least like to visit.

 

However, the complaint of the prostheses as I attempted child’s pose was a whisper compared to how my right wrist and shoulder responded to downward facing dog. These are the arthritic joints that sustained the most damage from the disastrous fall in February, 2015. They are why I spent so much of my summer in physical therapy. The fragility of these joints is why becoming fit enough to stand without using them is one of my life’s major physical goals. I need to strenthen the muscles involved in the use of the joints but I do not need to be putting weight on the joints themselves numerous times in a 45 minute period.

 
The yoga instructor did demonstrate an amazing stretch for the deep hip flexors. Unfortunately, I was unable to see how she got into the position and attempting to do it myself put way too much torque on the prosthesis in my knee.

 
And yes, I am aware that there are yoga classes in which modifications and props are used to allow people with prosthetic joints and injuries to participate. Since there are other people in the class who seem to know how to take advantage of these modifations, that is clearly the prerequisite that I missed. If I decide that I really want them, I will seek them and perhaps even fight for them. This class simply flowed from one movement to the next with me being the only one who was lost. I have a large number of issues and taking the time to offer me accommodations would definitely blow the flow.

 

Remember my motto:

 

When you can’t fight, and you can’t flee, flow

 

In this case, I was not able to get into the flow. I don’t ( at this time) see yoga as being worth a fight. So, I accepted my epic fail and demonstrated my willingness to flee.

 

THE GOOD NEWS

 

The first good news is that I have found one land class that works for me: Classic Chair. Between this class and walking (when my right tibia allows) I should have enough weight bearing exercise to maintain my current bone density for a while. Discovering that I had osteopenia should not have come as such a huge surprise. By the time my vitamin D level reached 4 ng/ml and the pain of osteomalacia convinced me that I was near death, I knew that my bones were not strong and healthy. Now my goal is to keep osteoporosis at bay.

Bone Health

Being African American does not protect me from osteoporosis. Any bone density advantage that I was born with has been leached away by lupus and medications, such as prednisone and the anticonvulsants used to help with neuropathic pain. I believe that everyone should check out their level of risk by visiting the website of the National Osteoporosis Foundation.

http://nof.org
I am also aware of the increased risk of death among women who break a hip.

http://www.sciencedaily.com/releases/2011/09/110926165857.htm8

I am keenly aware that the risk of death following a hip fracture  is especially high for black women.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4124750/

 

The good news is that the extra work I have been putting in on my hip flexors seems to be paying off and I have been able to return to deep water classes.