My journey with lupus began in 1981. I had been going through a stressful time in my life, including a job change and preparing for my 10 year high school class reunion, when I started to break out in hives. They first appeared on my hands and feet, with big, red, itchy welts. I hadn’t experienced anything like this before, and I had no idea what was going on. My first thought was that I was allergic to something – laundry detergent, the soap I was using, etc., although I hadn’t changed anything recently. In time, the hives started expanding, first moving up my arms, ultimately covering my whole body. My primary care physician ran a battery of tests on me, including for parasites, rheumatoid arthritis and lupus. Some of my lupus markers came back positive, and at 27, I was officially diagnosed with lupus.
My husband and I hadn’t heard of lupus, so we started to research this thing that was about to completely change my life. I found an old medical book at the library (this was before Google) and started learning about my fate.
Chronic. Progressive. Exhaustion. Joint pain. Organ damage and failure. No known cause. No cure. Can cause death. As we read these words, our hearts sank. How could this have happened? What would the future hold? Is this really the best my life would ever be again? Would I live long enough to see my kids grow up and get married? I was told I could never have kids again. I felt like my life was over at 27. We were scared and confused.
The Downward Spiral of Medications
My doctor referred me to a rheumatologist, who immediately put me on steroids to supercharge my immune system and knock the hives back. This started me on a 32 year struggle with disease and drugs that I was certainly not prepared for.
Over the years, as promised, my disease progressively got worse. I developed all kinds of new issues, from chronic joint pain to debilitating exhaustion. Some days I couldn’t get out of bed, and when I could, my joints hurt too much to move. The hives came back, once for an entire, miserable year. I started developing stomach problems. I gained weight. I became depressed.
My rheumatologist prescribed me drugs to help manage these symptoms, and then more drugs to manage their side effects. On and on it went, year after year, decade after decade. During the course of this journey I was prescribed over 30 different medications, often three or more at a time, and yet I continued to get worse. As my body adapted to the drugs and they lost their effectiveness, new ones were prescribed, usually more powerful and with harsher side-effects. It became difficult to tell where the disease ended and the drug-effects started. Some days, even weeks, were manageable, but flares would seemingly come out of nowhere and knock me down hard. In time, the flares would become stronger and more frequent. New symptoms developed.
Hitting Bottom
2013 started off as my worse year yet. I was taking Benlysta (by infusion), Methotrexate, Nexium, Prednisone and several other medications. I was the heaviest I had ever been. My hair was falling out, my skin was thin and bruised easily, and my teeth were flaking off from the drugs (some of which are used for chemotherapy). I went through a full, miserable year of chronic hives. My body just felt broken.
My monthly Benlysta infusions gave me about two weeks of decent living, but by the second two weeks I was just trying to make it to the next infusion. As my health declined, my husband changed jobs in order to get a better work-life balance to help take care of me.
In June of that year we were on vacation in Maine when we got a shocking call from the cancer clinic. They told us they were no longer able to give me my infusions. Apparently, the company who manufactured the drug kept raising the price, but our insurance company wasn’t increasing the amount covered, so they were actually losing money each time they dispensed it.
Panic set in. We believed this drug was the only thing keeping me somewhat functional, and without it I would be bedridden, or worse. We called our insurance company, and a wonderful man named Thomas empathized with our situation and offered to call all of the clinics in the area and find one that would give us this drug. While he kept us on the line, he called them. One-by-one he was told no. He would put us on hold, call another clinic, and then come back and say, “well, that was another dead-end, but there are still others to try…”. Thirty minutes into this we started to lose hope, but Thomas was still upbeat and positive. An hour and a dozen refusals later, his voice was less confident. The whole time we were praying, asking for a miracle. Near the end of his list, he finally found a clinic to take us. Disaster averted!
Our celebration was muted. We had a place to get my infusion, but we were shaken by the whole event and worried that this clinic would also stop administering the drug in time. We were again reminded that my life was dependent on drugs and insurance companies, and we had absolutely no control over it. As we sat on the front porch of our bed-and-breakfast, we discussed making a change. It was obvious our current path was not working or sustainable. We had given it over 30 years, and each new year was worse than the previous. I was tired of being dependent on drugs just to remain functional. The thought of making a significant change was scary, but it was easy to see where this was heading. I was the sickest I had ever been and we were running out of options. We were desperate.
Discovering A Different Approach
A friend of ours had been insisting we read two books, The China Study and Eat To Live. We had purchased them and brought them with us on our trip, but hadn’t started reading them yet. Maybe it was a sign. After this latest scare, we decided to read them before we came back. Both books make a compelling case for a whole food, plant-based diet, and how study after study have proven that it can reverse the effects of many chronic diseases. By the time we finished them, we were convinced that the changes they recommended was the new path we wanted to take.
Eat To Live challenges you to follow a strict whole food, plant-based nutrition plan for three months and then judge the results for yourself. At this point, we had nothing to lose. Sometimes you only make real changes in your life when you’ve run out of other options, and staying on the current path is a scarier thought. This was one of those times. My husband told me that he would eat whatever I did, so we were in. As part of this lifestyle change, we also decided to incorporate a consistent exercise routine (very slowly at first) and cut out my diet soda habit.
At first, the idea of eating such a “restrictive” diet was daunting, not just because we were giving up some of our favorite foods (hello, pizza!), but also due to the perceived time and cost involved in eating this way. We quickly realized that the foods we were eating were actually quite tasty. There are a multitude of fruits, vegetables, grains, legumes, nuts, seeds and spices for lots of variety. You can find thousands of great plant-based recipes on the internet. We learned tricks for cooking more efficiently. Bulk preparations and crock pots became our friends.
Over time, we lost much of our craving for unhealthy foods. As our taste buds adapted to less salt and sugar, food actually began to taste better. Although we started cooking at home more (which is always a good thing from a health perspective) we also learned to find restaurants that served vegan dishes, or we asked for certain dishes to be modified. Nobody has ever had a problem with our requests.
In addition to adopting a new diet, we also made other positive lifestyle changes, including exercise, stress management, and healing my gut from years of sickness and medications.
A New Life
The next three months were a turning point in my life. After the first week I was already feeling better than I had in a long time, which encouraged us to keep going. By the end of the challenge, I had lost 35 pounds and stopped taking all of my medications except one (which I no longer take). During my next doctor visit, my test results were perfect and my doctor wanted to know what I had done.
Most importantly, I felt great. I had energy and no pain, allowing me to do things that for decades I could only dream about. I got more involved in causes that are important to me. We were able to travel more, without the fear of a flare away from home. We went on a mission trip to Haiti. I biked across Nantucket, through hill towns in Italy and over the Golden Gate bridge. We started kayaking. I even went rock climbing with my husband for the first time at 62! I am now off my medications and have not had a lupus flare in six years. After such a long time, I finally got my life back. To this day, we consider this healing to be nothing short of a miracle.
Let me be clear: this is not something you only do for three months and then go back to your old habits. This is a lifestyle change. For this to be effective and lasting, you cannot do it half-way or on a temporary basis. That being said, I have no doubt it saved my life.
Making this kind of change can be scary. It took us over 30 years to make it. It’s amazing what you’re willing to do when you’re desperate. Of course, now that I’m healthy again, we regret not making these changes sooner. It’s hard to comprehend that I went through all of those years of misery, and it wasn’t necessary.
If the path you’ve been on isn’t working and your health continues to go in the wrong direction, what do you have to lose? It’s easy to feel like you are sacrificing something you love when you do this. What you are really sacrificing is disease and sickness. What is most important to you?
