Monday, September 30, 2013

Tenacity: Portrait of a Very Determined Lupus Patient

Everybody has at least one good story in them. Some people have a whole bunch of great stories. Some have a bunch of great stories that can be woven into one long story about the power of tenacity and determination. 

When faced with a chronic, and at times life-threatening, illness, each of us has to make choices about quality of life, career, family, children (or no children), weighing costs and rewards, making trade-offs for each choice. Everyone must follow their own path. Here is one woman's amazing story.

After a series of untreated strep infections I was dx with rheumatic fever at age 10. While the other kids in my neighborhood were outside playing, I was home alone reading. I grew up the only child of divorced parents who never resided on the same side of the country or near their relatives. My mother eventually remarried and I have a brother and a sister who are 18 and 19 years younger than I am.

My son was born when I was 20. Around the time I was diagnosed with lupus (between age 20 and 21), my mother had a massive stroke. My daughter was born when I was 26. By 27, I was a single parent with lupus and two kids. I'm skipping over the years of marriage to a traumatized Vietnam-era Marine. So, no, I have never had a great deal of family support and help. The only relatives within a 1000 miles of where I live now are my children and my grandchildren.

I did manage to get a scholarship to complete my undergraduate studies. I got my BA just a few months after my daughter was born. Then I got a fellowship for graduate school and completed my MA and my PhD. By then I had figured out that I could cope if I did not try to get around a big city using public transportation five days a week. The world worked best for me when I went out and dealt with the world one day and then spent the next day sitting in one spot working. So, academia was definitely the place for me. And I held down a full time faculty position at a major research university for 30 years.

During those years I think I worked as hard on coping strategies as I did at the job itself. One of my biggest job challenges was the fact that my department was not housed in a classroom building. So on the days that I taught I had to hike from one side of campus to the other at least three times. I had three total knee replacement surgeries but at least I was getting some regular exercise - you gotta laugh - LOL. After the ADA was enacted, and as my third knee replacement surgery approached, I was granted a reasonable accommodation which provided me with an office in a classroom building and classes that were all scheduled for that building.

One of my former graduate students is now a vice-provost at the university where I worked. She still remembers that I did not show up at the end of the semester party where she and one other student were scheduled to do their seminar presentations. The other students said that because I was not there they did not have to present. Those two retorted that they had listened to everyone else and that everyone else was going to listen to them. Of course I knew that they would do what they were supposed to do even if I were not there. That is why I scheduled them at the end of the semester.

Back when I was in graduate school, I would take my final exam and/or turn in my final paper and go straight to the hospital. As a professor, I was hospitalized at the end of the spring semester every year for almost 20 years. I would turn in my final grades and drive myself to the hospital.

I was forced into early retirement when I developed severe vitamin D deficiency following kidney surgery and and a broken leg (I was trying to plant flowers before I went to the hospital for the kidney surgery).

I have had some really difficult times and my resiliency has been tested over and over again. Because I became "ill" at such an early age I never had to go through a period of mourning for the loss of a life in which I was a healthy and active person. Many people who become ill later in life seem to get stuck in perpetual mourning for what once was and now is no more. They can't seem to bury that other life and move on with the new one. There really needs to be grief counseling for these lost lives.

It was difficult to live without family support. But then I did not have to spend a great deal of time trying to get family members to understand me and what I was going through and I never had to deal with those blue spells that come from feeling like a drain on the family. Every now and then I show up at family reunions and have fun because I don't owe them anything. I certainly do not owe them an explanation of my life.

What do you usually do when your Lupus symptoms flare?
I am no longer seeing a rheumatologist on a regular basis. My primary care physician is an extremely competent internist who is willing to try approaches that many conventional physicians will not. I asked him if he would help me manage the lupus and he said yes. I really like this man.
I have been blessed to see my lupus become so inactive that I am not currently taking any lupus medications or any narcotic pain medications

What has been most helpful in your recovery?
At this point in history there is no such thing as recovery from lupus. I am only in remission. This means that the activity level of the disease is low and the symptoms few. But it would only take exposure to one trigger for the disease to become active again. Over decades I learned to identify the major factors which trigger lupus flares in my body. I have learned to avoid some of these triggers, such as exposure to sunlight and other sources of UV. I have learned to handle others, such as stress, more effectively. After that I do what everyone who wants to be healthy must do. I eat a nutrient-dense whole-food diet designed to meet my individual biochemical needs. I supplement the nutrients that I cannot get from food, such as vitamin D. I also engage in various forms of exercise, mostly in a warm therapeutic pool. Every trip to the pool is like an island get away.

I have also benefited from movement, massage, meditation, and breathing even when they are practiced using techniques from my own traditional cultures rather than that of the Chinese. I have been very integrative in my practice. And 3MB is simply one part of an approach that I believe has enhanced my well-being.
What are you passionate about?

Since I retired from the university three years ago, I have completed a new degree: Master of Science in Health and Nutrition Education. I am a holistic health and nutrition educator who is passionate about health equity. I am beyond passionate about the eradicating the vitamin D deficiency epidemic. Recent research indicates that people with lupus tend to be vitamin D deficient. It also shows that their vitamin D levels are related to the frequency and severity of lupus symptoms. So I am obsessive about telling people with lupus to correct this deficiency.

Thank you for allowing us to share your story. You truly are a fighter, and an inspiration. Thank you also for using what you've learned to help others live better lives.

Stay tuned- I hope to find more incredible patient stories like this one!

Carla Ulbrich

The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer - Carla's book "How Can You NOT Laugh at a Time Like This?"