12 minute read
Laura Biernacki
“We can use the pain and turn it into spiritual growth.” - Author Unknown
I have always loved this quote because I believe that it has truly been the foundation of my perseverance, it was how I outlived what my doctors thought would happen. I have tried my best to use all of my mental, physical and spiritual pain as ways to grow closer to God. I am not saying that I do not have bad days, because I do, but I have always tried to use my lupus as a way to grow. I also know that pain is miserable and I would never wish this upon anyone, but this is just my way of dealing with the pain in a way that works best for me.
I was diagnosed with lupus in 1995. I was 28 years old and it turned my whole world upside down in so many ways. I was working in Detroit as a home care hospice nurse at the time, and I was having problems keeping up due to constantly feeling ill. I was having a lot of weird symptoms such as the famous butterfly rash, sensitivity to the sun, joint pain, fatigue that caused me to fall asleep at the wheel, and a lot of inflammation in my lungs. I also found myself forgetting a lot and feeling very depressed. I had to stop getting highlights in my hair because it started falling out due to my sensitivity to the chemicals. Finally, I went to my physician in frustration because I would get high fevers of 104 degrees, severe joint pain and such horrible fatigue. I always felt like I had the flu.
It took about six months to get diagnosed with lupus. I was blessed with a wonderful physician who was very thorough and knowledgeable. Back in the 1990s, not much was known about autoimmune diseases like lupus. In fact, I remember in nursing school briefly going over autoimmune diseases. There weren’t many treatments or knowledge back then, but Dr. Chari was a very smart and wellread man who did all sorts of blood tests and other types of tests on me. He listened to me, believed me, and supported me. The day Dr. Chari did the tests on me, he called me to tell me my diagnosis was extremely profound. It was also the same exact day that my twenty year old patient died of lupus. Talk about a shock. I was terrified, but Dr. Chari told me that I had a much milder case than her, so I felt some relief. But even with that relief, I was still in shock and really scared.
I hated this disease because I had to give up my dream career as a hospice nurse. I felt it was my calling and that it was what God wanted me to do. However, the hours were too demanding and I continued to flare. I even started having some heart problems, but that eventually got resolved.
As time went on, I had an amazing boyfriend who is now my husband. He supports and loves me unconditionally. He helped me get my master’s degree in counseling so that I could have a career I could handle. I felt like God was telling me that I was supposed to help people through therapy instead of nursing.
However, that did not work out. Shortly after graduation, I started having bizarre symptoms which turned out to be neuropsychiatric lupus. These symptoms included full-on hallucinations, migraines, paranoia, losing my balance due to dizziness, numbness in my arms and legs, depression, and anxiety. One time, I was sitting in my car and I felt like the car was falling fast through the ground. I would also lose all sense of time, similar to a blackout. Sometimes, I didn’t even know where I was. I am originally from Detroit, but because I was living in Cleveland, I couldn’t remember if I was in Cleveland or Detroit. It was absolutely terrifying. I eventually
L A U R A B I E R N A C K I ’ S
W A L K S T O R Y
embraced my hallucinations as my friends and used as much humor as possible to deal with my unusual situation.
Luckily, I had this amazing rheumatologist, Dr. Stein and my awesome neurologist, Dr. Miller to diagnose me with CNS lupus and find a good treatment. They tried different infusions, but the best infusion was Rituxin. I am still on Rituxan as well as Plaquenil, which seems to be keeping my CNS lupus at bay. My rheumatologist Dr. Stein ended up retiring, but he was replaced by another great rheumatologist, Dr. Ahmad, who continues my Rituxin infusions and other treatments today.
In 2018, I started being unable to eat much more than ¼ cup of food without throwing up and being nauseated. I was also extremely constipated, I went from 125 lbs down to 92 lbs in just a few months. I cried constantly because I couldn’t eat. Basically, I was starving to death and I looked like I was dying. I ended up in the emergency room at Southwest General Hospital because I had blood in my stool and I was throwing up blood. It was then that I met a wonderful gastrointestinal physician, Dr. Newton, who saved my life.
He did a bunch of tests and found that I possibly had gastroparesis. He put me on tube feeding so that I could finally get my nutrition. He first tried an NJ tube that went down my nose and into my small bowel. I still couldn’t stop throwing up, so I ended up in the hospital again. I guess on top of everything else, my mesenteric artery in my abdomen collapsed, blocking my intestines. Therefore, I not only could not eat, but the nutrition from the little food I could eat was null and void. The intestines not only digest, but they are designed to absorb the nutrients from the foods that we eat.
After a month, I was able to get my feeding tube pulled because I had finally gained weight. I weighed 105 lbs, which was awesome; however, the symptoms came back, and I dropped back down to 92 lbs. Dr. Newton told me that I needed a more permanent solution, which was the PEJ tube being inserted directly into my intestines to feed me. The usual medicine that is used for gastroparesis was not an option for me because I was on Plaquenil. Plaquenil and certain medications when taken together can be very harmful for the heart, so I had the PEJ tube put in and wore it for two years.
During these two years, both Dr. Newton and his nurse practitioner, Allison felt I should see Dr. Cline at the Cleveland Clinic. He was an expert and was doing a lot of research regarding motility issues such as gastroparesis. They wanted to see if there were more options for me where I could get rid of the feeding tube.
I saw Dr. Cline who wanted to run more tests. He did a smart pill test where you swallow this pill that measures the movements of your stomach all the way through your intestines. The purpose behind this is to find any motility issues with either one’s stomach, intestines, or both. It indicates if you are having slow or no motility.
He also drew a lot of blood and tested for things I had never heard or seen before. The results showed that it was not my stomach, but my intestines which showed almost no motility. That was why I was so severely constipated and would fill up on food so quickly. My intestines were literally frozen. My blood tests showed it was neurological and autoimmune, which was no surprise because most
“A ver y impor tant way that I have learned to deal with having lupus is to find the meaning in my suffering. “
people have more than one autoimmune disease. He diagnosed me with a very rare disease known as autoimmune gastrointestinal dysmotility disorder. The disease itself was discovered in 2017, and very few people in the medical community knew about it. The only treatment known to work are IVIG infusions, which are done weekly to every other week. He put me on IVIG infusions, and after six months I started eating. Dr. Newton was finally able to pull my tube! It was a glorious day to be able to eat. I was not able to eat before for two full years, so I was ecstatic. I have to follow a bland diet, but I do not care because I am able to eat real food.
Lupus is a pain in so many ways. As many lupus warriors know, it takes away so many things in life such as having a career or being able to have any type of normal life. However, I have always believed that my attitude is extremely important, not only for my survival, but also to have a meaningful life. I wanted to enjoy the life God gave me, even if it was not perfect. Then again, I do not know anyone who has a perfect life, with or without a disease. So how do I cope and stay positive?
I have learned over the years to try to keep a positive attitude and use a lot of humor. Of course I have my bad days like everyone else. I cannot deny my feelings of anger, anxiety and sadness, because if I try to force myself to stay positive and deny my feelings, I end up stuffing down my emotions. This doesn’t feel good because I end up blowing up at the wrong time and at the wrong person. Instead, I look at my feelings and try to deal with them in a more positive manner. For example, I find physical exercise such as boxing, to be very therapeutic. I also talk about my feelings to my family and my friends or my therapist. I am truly blessed to have such a wonderful support system.
I also find that various types of complementary therapies such as Reiki, acupuncture, massage, Qigong, meditation and prayer help me deal with a lot of anxiety and pain that goes along with having a chronic illness. Finally, my faith is one of the biggest ways that I find helps me cope with all of the uncertainty of having lupus. I try to put all of my anxiety into God’s hands and trust Him to take care of me.
I try to look at lupus as my teacher. Lupus has taught me many things: I have learned to be grateful for each day that I am still here; I have learned to have faith in God, that things always work out even if it’s not in the way I wanted or pictured it to; I have learned patience with myself and others; I have learned to feel compassion for so many other people that are suffering in ways worse than I am; I have been forced to slow down and try to savor each moment. None of us know the future, and with autoimmune diseases, we could be fine one day and in the hospital the next.
A very important way that I have learned to deal with having lupus is to find the meaning in my suffering. Throughout my life, it seems like anything bad that has happened to me has had a purpose, even if I couldn’t see the reason for a long time. As I have mentioned already, I feel like I have become a much better person since my diagnosis.
I’ve found that I have the strength to endure more than I have ever realized. I also mentioned that I am lucky enough to be able to be of service to others, just not in the way that I thought I would. One way was becoming a Reiki practitioner.
Another way I tried to help others was I ended up writing a book called Stronger Because Of It. I never thought I could do something like this, but my dear friends Matt Buonocore and Alaina DaRin convinced me to try. They are wonderful poets who love to help others find their inner author. They convinced me that I could help other chronic illness warriors with my story and help them feel not so alone, and also help them find ideas for coping after being diagnosed with a chronic illness.
Since I have been dealing with lupus and other diseases for almost thirty years, Alaina and Matt felt that my life experience could be of service to others. So with their help as my mentors, editors, and publishers, I wrote this book that I pray will help other people, especially those who are struggling and are newly diagnosed.
I feel strongly that we are called to help people in our life journey, that service to others is a very important part of our purpose in life. I want everyone reading this to understand that you do not need to write a book to help people. I feel that being kind, a good friend and smiling at others is just as important. It’s the little things in life that brighten people’s day. As St. Theresa of Lisieux said, “A word or a smile is often enough to put fresh life in a despondent soul.” She also said, “Remember that nothing is small in the eyes of God. Do all that you do with love.”
That is why I walk for the Lupus Foundation of America, Greater Ohio Chapter. I walk because I have seen incredible improvements in treatments for lupus patients. I have found that the awareness and understanding of autoimmune diseases have improved so much over the time than when I was a student in nursing school, reading only a paragraph or two on these diseases. I walk for my patient who died in hospice the same day I was diagnosed. I walk to raise even more awareness, understanding, and money for research because we still have a ways to go. The treatments and education are vastly improved compared to the early 1990s. However, we still need to find a cure. We need to keep walking and get the message out there. That is why I walk.
