Test or Testimony?
While lifting weights at the gym one Friday morning, it became difficult to wrap my fingers around the bar of the barbell. I looked at my fingers and noticed they looked bigger than usual. I experienced moderate pain as I closed my hand to make a fist. Puzzled about this newfound pain, I soon left the gym since I wasn’t getting much accomplished.
Over the weekend, things became worse as I “just didn’t feel right.” I called into work sick Monday morning which turned into a two-week absence from work. During this time, I visited the clinic several times as I was in so much pain that I couldn’t sleep but an hour or so every night. I also repeatedly looked at my fingers as I was “willing” them to return to normal size thinking the pain would simultaneously go away. Several months later, the diagnosis came. I had lupus.
For a couple of months, I was in denial. Initially, I didn’t know much about the disease, and I really didn’t care to learn. Researching and learning about lupus would have been admitting I was indeed sick. I was not ready to accept that fact, mostly because I felt I was too young to be saddled with a chronic, and sometimes fatal, illness.
As the months progressed, I became increasingly sick. The pain in my fingers eventually spread to all my joints: wrists, elbows, shoulders, knees, ankles, and toes. Most of my hair fell out, and I began wearing baseball hats when I left the house. I developed rashes on my face, legs, and back. I started experiencing memory loss, developed mouth ulcers, and became very sensitive to the sun. I lost my appetite and would only eat an apple or ½ a can of soup for the entire day. I quickly dropped 25 pounds.
When I finally accepted that these symptoms weren’t going away, I scoured the internet for information on lupus. Basically, it’s an autoimmune disease that affects your organs and tissues. In other words, my body was attacking itself. The first medication I took was Prednisone, a type of steroid. After a few months, I started taking other meds in an attempt to wean myself off the steroids because you shouldn’t take them long-term. At one point, I was taking 12 different medications. One of these included Vicodin, the painkiller. For many months, I was popping the painkiller as often as I was allowed, every four hours. Sometimes the Vicodin worked, and sometimes it didn’t. When it worked, I had absolutely no pain for a few hours. When it didn’t, I’d spend the night sitting in the middle of my bed writhing in pain.
Going to work became very difficult. When the alarm rang every morning, I’d struggle to walk to the kitchen for a cup of milk so I could take a Vicodin. I’d then get back in bed for 20 minutes waiting for the pill to kick in. Getting dressed took forever. I eventually stopped wearing jewelry and makeup on most days because the effort to use the mascara brush or fasten my earrings was simply too great. I could no longer wear button-down shirts because I couldn’t fasten the buttons. I stopped wearing tennis shoes because I couldn’t tie the laces.
As I became sicker, I started working from home three days a week. My employer was absolutely wonderful during this very difficult time. There were days I’d sit at my desk with my head down while I waited for the Vicodin to perform its magic. Other times, I’d go lay down in the backseat of my car for 15 or 20 minutes because I could no longer sit up. Co-workers playfully teased me as I slowly walked through the office. Others didn’t hesitate to tell me I looked “frail”, “bad”, or “like you’re dying”. When I felt I couldn’t take the pain another day, I told my manager I was taking a week’s vacation to simply lie in bed in hopes of feeling better. That same day, my Human Resources manager told me we’d discuss short-term disability when I returned from vacation.
Because lupus attacks your organs, I was sent to every specialist imaginable for testing. In plain terms, I’ve seen kidney, lung, and eye specialists. I’ve also had sonograms taken of my heart as well as electric shock performed by a neurological technician. (For the record, getting electric shock is the most intense and severe pain I have ever experienced.) At one point, a friend suggested acupuncture treatments. I immediately dismissed her as I couldn’t imagine countless needles being stuck all over my body. Four months into my illness, I became “desperate” and gave in to acupuncture, horrible-tasting herbs, and the adoption of a restrictive diet. I also took up swimming and Pilates because I read they are good for joint pain.
For all the physical aches and pains I experienced, the toll the disease took on my mental health was just as taxing. I went from a very active lifestyle to evenings and weekends spent on the couch. Before I became sick, I hit the gym six days a week, jogged 30 miles a week, and averaged six softball games a week (do you know how hard it was for me to email my softball friends and tell them I could no longer play?). I became “jealous” of people with good health and physical mobility and “angry” at others who chose to lead a sedentary lifestyle. Before my illness, I was in my best physical shape. But when I lost weight, I also lost all the muscles it took me years to develop. For the first time in my adult life, I became dependent on others, a tough pill for me to swallow. For example, I had to ask friends/co-workers to open up my bottled water and food containers because I could not bend my fingers.
As previously stated, I spent a great deal of time on my couch or in my bed. I would try my best to stay asleep because being asleep meant I didn’t feel the pain. I was taking things one day at a time and on really bad days, I felt like I was living hour by hour. Before bed every night, I’d ask God to let me be back “normal” when I awoke the next morning. Nevertheless, I’d wake up the next morning feeling worse than the night before. I could not see myself living like this the remainder of my life. I felt I didn’t have the strength to continue like this on a daily basis with no quality of life. Therefore, I began to pray to God, although I’m sure my prayer would seem selfish to some people. (But, no one else knows how I was feeling or what I lived with on a daily basis.) I told God I’ve lived a very good life to this point, one with wonderful travels, experiences, and love. I told Him I was “okay” with dying, that I was ready to leave this earth. Simply put, I wanted to stop the pain…forever. I knew my parents and siblings would eventually be okay if God were to take me. But, one person caused me to pause…my then nine-year old niece. I thought of her, and I immediately smiled. She is, without a doubt, my “mini-me”. So, the thought of her losing me and having to deal with a close death for the first time caused me more heartache than all the physical pain I’d experienced. I didn’t want her going through that, and the thought of her in pain brought on a rush of tears.
I then asked God for forgiveness. I no longer wanted to take the easy way out, and I resolved to beat this. I refused to accept this as my lot in life. I felt I had more to offer than a life of pain and inactivity. I believed God didn’t want me to live like this on a daily basis, and I believed he would heal me. So, I began to pray for a healing every time I thought about it. I threw myself into healing scriptures, recited them over and over, and eventually memorized them. I cried as I listened to gospel songs. I regularly watched television broadcasts of Bishop Jakes and Pastor Osteen in an effort to increase my faith.
If memory serves me correctly, I was extremely sick for about eight months and moderately sick for about two years. During that time, I had wonderful people in my life that made things easier. Mom would call every other day to check on me. And, I could expect a weekly get-well or encouraging greeting card. Once, after I complained how dirty my house was, she asked my brother to drive her to Austin for the weekend so she could clean my house from top to bottom. Only a mom! Dad was great, as well. He readily listened to my gripes and understood my issues as he experienced some of the same symptoms (Dad suffers from MS). My big sister would also call regularly to check on me and did something only a loving sister would do: clip my fingernails because I was too weak to use the clippers. My little brother, in his early 20s at the time, would email me weekly to ask how I was doing. And, he always told me he was praying for me to get better. Mom laughed when I told her I didn’t know my little brother prayed! And, I can’t leave out “Mini-me”. Every time I talked on the phone with my niece or saw her in person, she always asked the same question, “Aunt Kitty, are you still sick?” And, I would always reply, “Yes, Sweetie, but I’m getting better.” She was so amazing to me. One particular time, she got down on her knees and fed me sliced peaches as I lay on the couch. Another time, she offered to fix my sandwiches before we left the house so I could use those few minutes to lie in bed.
I also had wonderful friends and co-workers with whom I had memorable experiences. One friend sometimes took me to UT baseball games with her and her husband, knowing full-well they’d have to assist me in climbing stairs or getting out of their truck. Another friend would drive approximately 100 miles to visit and check on me. No matter how much weight I had lost or how pale my face looked, he always told me “Melissa, you’re looking good.” Another friend surprised me with a delicious homemade breakfast one morning and encouraged me to use her swimming pool anytime I wanted to aid in my physical therapy. Because of my special diet, another friend always made sure to ask me what I could eat before we went out to dinner. And, I simply can’t say enough about a very special co-worker. I could go on forever, but the things I remember the most are he’d retrieve anything I needed from the kitchen so I wouldn’t have to make the painful journey, walk to the corner store every day for months to get me an Icee because nothing else I drank tasted good, and play Mr. Handyman by fixing up my flower bed and fixing things around my house. He even followed me to the corner store one Friday after work and pumped my gas because I was too sick to stand up and pump it myself.
It has been 4 ½ years since I first noticed the swollen fingers. I don’t remember exactly when it happened, but one day I realized I no longer felt joint pain. I feel almost as well as I did pre-January 2006. I honestly believe my faith turned my situation around. When I started BELIEVING I would be healed, I feel that’s when God used my faith to change my circumstances. Day after day, I told myself “God has healed me”, and I didn’t let myself think otherwise. It’s been over two years since I last took a painkiller. Yes, I still take two medications daily, and I still have occasional flare-ups when I don’t get the proper rest and exercise or when I’m stressed and eating poorly, but I feel I am healed. I have an active lifestyle again that includes jogging, weightlifting, softball, and stints with soccer. More importantly, I am honored and privileged to share my testimony of God’s grace and mercy. To God be the glory.
By the way, I never did go on disability.