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