It was the summer of 2006 that I first noticed something odd. I took a trip to the doctor because I had a sore throat that simply wouldn't let up. It was strep and the doctor gave me a shot of penicillin. Within a couple of hours, I was completely covered in hives.
I had never had a reaction of that sort, and it was the beginning of a journey I did not expect to take. The hives remained for a long time and even when they would let up, it seemed that they would return from exposure to most ordinary things. I battled pink eye more times than I can count. Bright lights were challenging for me – even in my classroom, I would often keep the florescent lights off. Small periods of time outside would cause a red rash that felt like a sunburn.
My left eye started having such significant pain that I would wear an eye-patch from time to time to just give it a break. I finally went to the eye doctor and discovered that I had glaucoma (which was shocking for someone of my age) as well as a terrible eye infection called uveitis. My eye doctor asked me if I had an autoimmune disease because uveitis is not generally a primary condition, rather usually the result of an underlying autoimmune illness. I had to put dilation and prednisone drops in my eyes for what seemed like forever, because the infection was difficult to get under control.
Over the course of the next few months, I started having more "odd" symptoms, including what was now a near constant state of hives. I remember having large red splotches as well as smaller raised ones that reminded me of mosquito bites. Sometimes the lesions were "target" – perfectly round with alternating red areas that resembled a target. My fingers started turning blue (Raynaud’s) and they would become so swollen I couldn't bend them. I referred to them as "sausage fingers" and they were extremely painful. Often times, small, purple-like blisters would form on my swollen fingers that, when touched, felt much like having a splinter under the skin. I started having problems swallowing and gained weight for no reason at all. My breathing became extremely labored. My lower legs were shiny, tight, swollen and red - my ankles seemed to disappear! My body ached and many mornings it was difficult to just get out of bed. I felt like I was 80 years old, even though I was in my 30s at the time.
Some mornings, I would wake up with severe angioedema, or under-the-skin swelling, of my lips and eyes. Eventually, I landed myself in the emergency room and was immediately admitted. After a series of tests, I was told that they suspected I had lymphoma because my lymph nodes were severely enlarged. At that time, I had the first of three lymph node biopsies (all negative for lymphoma thankfully).
I remember the pulmonologist walking into my room and after taking one look at me stating that he thought I had sarcoidosis because of the rash that covered my body. My lungs showed massive hardening and scar tissue and I was placed on oxygen support at night.
I finally found a rheumatologist and my initial ANA test came back as 1:1280, which is extremely high. Due to the blue “lattice” type of rash under my skin and some other factors, my doctor gave me a preliminary diagnosis of sarcoid, lupus, or mixed connective tissue disease – but decided he would call it lupus for now. I was put on a high dose of prednisone (and couldn’t sleep for nearly a week) as well as Plaquenil. I already had such severe issues with my eyes and I felt uncomfortable taking this since he could not definitively determine if I had lupus.
Each time I visited him I would report new symptoms and yet nothing would change in my treatment. He was not an easy doctor to see and very rarely saw me in the midst of a flare. He continued to say that we would “just call it lupus until we come up with something better.” What? Really? Eventually, I just gave up on him and stopped taking the medication because it wasn’t really doing anything for me.
It was around this same time that my family doctor diagnosed me with Hashimoto’s, a hypothyroid condition that is strongly tied to autoimmune illness, which helped explain my weight gain. Life went on and I dealt with the flares as best as I could. Each year, it seemed that I would exhaust all of my sick days. I found myself in a depressive and uncertain state. It was extremely frustrating.
Finally, in early 2012, my family doctor told me that there was a fairly new rheumatologist in town. I took a chance and went to see her. She took about 30 vials of blood as well as a urine sample and I was officially diagnosed with lupus. Unfortunately, my lack of appropriate treatment for six years caused irreversible damage. I was spilling nine grams of protein and was referred to a nephrologist. Through a kidney biopsy, lupus nephritis was confirmed and I was in acute kidney failure. I was hospitalized and had 27 pounds of fluid drained through intensive Albumin and Lasix therapy.
By now, I was also suffering from vertigo, shaky limbs, shooting pains, massive headaches, visual disturbances, confusion, and memory loss. My rheumatologist’s husband was a neurologist and she sent me to see him when she saw the small purple “bruise-like” lesions on my legs along my veins. After another series of tests (MRI, MRA, lumbar puncture, and a nerve conduction study) I was diagnosed with lupus cerebritis and vasculitis due to lupus. I had a sural nerve biopsy that became my biggest nightmare. It simply would not heal. After a second surgery, 6 weeks of IV antibiotic infusions, and several months with an infectious disease doctor and a wound vac, it finally healed. Because of my now immunosuppressed state and obvious susceptibility to infections (I came down with at least 4 while on CellCept), my doctor placed me on disability and my career as a teacher came to an end.
I found myself in a depressive and uncertain state. It was extremely frustrating.
To this day my husband remains my biggest and most important support person.
Changes for me have been dramatic in many ways. I was a 3rd grade teacher for 12 years. My entire career was completed at one school. I miss it terribly. Now, because of my “restrictive lungs”, I have to wear oxygen 24/7 and because of the CNS involvement, I have to walk with a cane. I have definitely had to slow down. I moved from the big city (Las Vegas, NV) to my childhood home (Amarillo, TX) to be close to my family. My medication list is longer than my mother’s and that is a challenge for me. I can remember saying once that if “I depended on medication to live, I would probably die because I just don’t do well with it.” Obviously, my mindset on that issue has changed.
Other than appointments with doctors or monthly chemo infusions, I rarely leave the house. However, I remain optimistic and am taking my life in a new, positive direction. As a teacher, I had earned a Master’s degree as well as three post-graduate certifications in teacher leadership, differentiated instruction, and gifted and talented education. Although I had thought about becoming an online teacher in a virtual environment, I knew I could not be reliable enough to maintain it. Additionally, teaching can be rather stressful, which is an instigator for flaring up. I have looked into alternative treatments including essential oils and acupuncture, which show promise.
In the beginning, my mom and my teaching friends were my biggest supporters. My mom is an RN and she would go to my appointments with me because she knew I would seldom remember what I was told. My friends encouraged me and “covered” me at work more times than I can count. They would visit me in the hospital and offer words of encouragement. My son has also been a wonderful support for me and often asks me if I have taken my medication.
Since being diagnosed, I have gotten married and to this day my husband remains my biggest and most important support person. He monitors my medication for me, keeps track of my oxygen tanks, ensures I make it to my appointments, and loves me unconditionally despite my circumstance. He doesn’t tolerate a negative mindset and so I have found inner peace, happiness, and joy.
I am proud of the fact that I remain strong and optimistic. Being unable to teach was difficult for me to come to terms with, but I know that I touched the hearts and nourished the minds of many young people. Life is not over. I am now enrolled in an SNHU (online) and am working towards a second Masters degree in English and Creative Writing. I have started writing a novel, I maintain a blog, and I am determined to take my life in a new direction. My goal is to become a published author and write for children.
My biggest piece of advice is: “Do not ignore your body!” Having lupus is not a walk in the park, but ignoring the symptoms and complications that come from lupus will not make it go away. Trust your doctors, but do your research and be your biggest advocate.
I am thankful for the life I have been given. I hope that through my illness I can inspire others to be the best they can be regardless of their circumstances. At home, I have two dogs, a crazy Yorkie named Toby and an affectionate dachshund named Baylee. I also have four cats: Izzy-B (who is almost 20 years old), Mama Cat, Chloe, and Sydney. I absolutely believe in the power of positivity and work hard to maintain an attitude that keeps me moving in a positive direction!
I am a wife, mom, sister, daughter, friend, pet lover, and retired elementary school teacher. Teaching was my passion in life, until I had to change it due to lupus and being placed on disability. However, I know my life isn't over! Instead of burying my head in the covers, I have returned to school (online) to earn a second Master's Degree in English and Creative Writing. I enjoy writing and aspire to be an author as it is something I can do from home and provides a healthy outlet in which I can express myself.
Ultimately, I would like to write for children because in my heart, I will always be a teacher! I am extremely grateful to my mom, Linda; my son, Max; and my husband, Craig (as well as the rest of my family and all my friends) for providing me with plenty of emotional support. I write a blog, which has been a great source of inspiration for me where I can share my life in words about the lessons I have learned through life and lupus.