Living with Lupus
Senior year should be a time of fun and celebration of years of accomplishment of my education, but something else happened that changed my life forever…I was diagnosed with lupus. I was 17 years old faced with a chronic disease that could end my life early, how do you handle that?
I was fine and one day woke up with severe aches and pains that affected my joints and limbs and from one day to the next a different part of a checklist of symptoms that described a lupus patient and I did not fit the mold. Weeks after dealing with this pain it just suddenly went away so I thought it was just a fluke, so I went back to my day to day life.
Weeks later I started feeling like I had the stomach flu, throwing up off and on and very lethargic. One evening I was sent home from work because I looked so ill. Hours later my mom came home from work and took one look at me and told me we are going to the Urgent Care. Test after test, stick after stick until it was time to close down, the doctor finally told us we needed to go to ER at St. Luke’s hospital because I was going into renal failure. Overnight my life changed, forever. I was introduced to my current Dr. Robert Schneider who helped save my life. I was hooked up to IVs and bloated to a new size 14 from a size 10 over night because my kidneys weren’t working. Dr. Schneider’s spoke to me as an adult who had to make health decisions to save my life. Did I want to be aggressive which may have more side effects or take the slow, easy route and keep deteriating until I eventually may be saw results? I was young and wanted to LIVE, I took the aggressive route. This meant for 2 years I would do chemotherapy. Not the same level as cancer patients, but it came with the same side effects-nausea, weakness, and hair loss. I would go to the cancer center once a month for a year and get an 8 hour IV drip of a cocktail of drugs. For the first hour of treatment I would wear a cold cap on my head to try to prevent hair loss. Treatments would taper off to 6 months-once a month, to 3 months-once a month, to none.
For the remainder of my senior year I was home schooled because my immune system was so fragile I could not be exposed to a place with so many germs. I had to quit my job because I worked with kids. I became the girl in the bubble. Thanks to my early hour credits I could still graduate with my class. Being blessed with great friends I had photo taken of senior moments/special; events so I could have those memories too. I was able to go away to school, MIZZOU, which made my mom so worried at first. My freshman year once a month on Friday I would get picked up by my exhausted mom after a hard day’s work to go home for my treatment. If I was to sick or weak to go back I would miss some class, fortunately I had professors who understood my situation. Once I could bring my car up sophomore year I would drive home myself. I had a roommate I had been friends with since 4th grade so she knew what I had been going through and she took care of me. I have always been private about my Lupus so no one knew about my disease. I didn’t want to be known as the sick girl or scare people because it is auto-immune disease. I had a GREAT time in college like everyone else, except I had lupus and was in hidden pain at times or extra tired; my STRONG inside voice always helped me push through.
Along the Way
Over the years I have had various flares some worse than others. I have had some bone density issues because I was put on a steroid at my initial treatment plan which I have been on various doses depending on my lupus activity. I began to have excrutiating pain in my left hip so in 2006 I had a hip surgery called a core decompression to hopefully prevent the hip surgery I ended up having any way in December 2012. My lupus has changed form over the years not only affecting my kidney function that is always monitored but my skin as well. I started to get skin lesions or sores on my hands that made them look burned and was very uncomfortable. I had one form in the middle of my back that made it difficult to comfortably wear a bra or sit back in a seat at times. To try to treat the issue in my back I took cortisone shots to try to heal it and ease pain. Prednisone is a frog that reduces your metabolism and makes you heal slowly; it took years for my wounds to heal. Following the skin issues I thought I was in the clear, but Lupus snuck in their again and flared in my eyes. I started noticing light sensitivity print was hard to read, and depth was difficult to detect. I saw several doctors who could not say what it was exactly, one thought it was macular degeneration, but I didn’t fit that checklist either. I was finally told Lupus flared the retina in my eyes which caused my loss of vision. I was left with very little central vision and my peripheral is poor. I can drive, but I have to use blue blockers to block out maximum light. I wear glasses with a magnetic clip that is auburn in color that also blocks out light but it helps with my acuity to offset my loss of central vision. It was hard at first, scary because I was going blind and did not know what to do, how to stop it. I couldn’t drive and had to depend on my mom and husband to get around; this killed me inside because I was so independent. I remained focused and determined to beat this and God is good all the time because I have enough vision to function, normally and independently. I use my eye ware and visual, technical equipment to help me in other areas.
In 2014 I had my most severe battle with lupus, but yet again I overcame it. Super Bowl Sunday I was taken to the ER because I felt more pain than usual and was extremely weak. I had already been off from work due to more lupus sores that had formed on my back in October that had to be surgically cleansed. This surgery caused me to endure daily bandage changes on my back to fill a whole left from the surgery. Once I got to the ER I learned my blood pressure was dangerously low and they couldn’t figure it out. I was put into an ambulance and rushed to the hospital where my primary care doctor was. Still Dr. Schneider’s from my initial flare up 20 years ago, he is family to us. My condition spiraled from there. I ended up being intubated and placed in ICU. The full picture even now is foggy because I don’t remember much of it. This was the first time doctors ever told my mom I was not going to make it. I am a fighter, I did wake up slowly. I was in a hospital bed so long I had muscle atrophy. After all of that, now “I CAN’T WALK?!!! I left the hospital February 28th to be taken to a rehab center to learn to walk again. This was the hardest I ever had to fight and dig deep for my STRONG inside voice to push me forward. I had intense therapy 3 times a day. I worked my way from a wheelchair, to a walker, to a cane and now my own two feet.
I have lived through quite a lot in my 20 years of lupus but I have survived it. Every day is a gift because there are many who have lost their battle with the disease or who have more severe symptoms than me so they cannot enjoy life like I can. I could never be where I am in life without my beautiful angels around me who push me I the right way to keep fighting. My family: Laurel, Mom, my sisters, my auntie, my husband, and wonderful friends. They all care enough to check in on me, pray for me, and tell me it will be alright. I don’t know what may happen tomorrow so I don’t spend time today complaining about my pain or discomfort, I get up and take one step at a time and look forward to a great day because I woke up.