Surviving Lupus

     She was beautiful, funny, with the most brilliant smile you had ever seen. Her skin was so clear that if you looked too quickly you could easily mistake it for porcelain. One day while at work she looked down at her chest and noticed a large red spot that looked as if it were rubbed or scratched, accompanied by a vicious pain that was completely unexplainable. After about a week the pain and redness subsided. She went about her day as she always did, but then one morning she woke up with alien-like blisters filled with water, not to mention a swollen eye, and lips that looked like inflated balloons ready to pop at a any given moment. Large red hives had covered her body.  Blisters were everywhere. Her face, feet, neck, arms, back, and anywhere else you could imagine were completely covered in hives. The porcelain skin, gone. She felt like a monster.

     Shortly thereafter she was rushed to the Emergency Room. Speculation began. Nurses were tossing around scenarios like a clown in a juggling act. "It looks like an insect may have bit her." "No I think it's food allergies." "It may be a chemical allergy". Then Doctor Daniel Kesden walked in, slowly  analyzing her strange predicament. After carefully checking her once bright now red swollen eyes, her lovely lips now the size of a small orange, the palms of her delicate hands, and the soles of her feet now swollen and red he candidly said, "This is not an allergy I am going to test you for Lupus." Her heart stopped for a brief moment. She could not believe what she was hearing. Only a few weeks before that her college professor had mentioned to her that one of his colleagues exhibited the same symptoms as she was having, the pain in the joints and the hives on her skin. She mentioned that suspicion to the Doctor on that fateful night in the Emergency Room, hoping not to get a confirmation from him, but instead what she heard was that he was almost demanding a Lupus test because he knew better than she that that is what it was.

      As the days passed she was prepared for the news she instinctively knew she was about to receive because of all of the research she had done in that small window of time prior to receiving  the final result. Her greatest fear was confirmed, Lupus was the diagnosis. Depression and sadness soon set in. Her reality, her life would not ever be the same again.

     This once outgoing fun loving 22 year old soon became a recluse. Not wanting to be seen was something she had never experienced. She went from doctor to doctor looking for a cure, or even just a medication that would get this disease that was quickly ravishing her body under control. Vitamins, Whole Foods, libraries, blood tests, Emergency Rooms and doctor visits became her new way of life.

      Her journey was long and arduous. The only thing that kept her sane and somewhat hopeful of a future was her inner voice and God telling her that "IT WILL NOT BE THIS WAY FOREVER!" She listened to that voice inside of her after having her first heart attack. She listened on the nights she could hardly breath taking fearful shallow breaths, her throat and esophagus  so swollen she could barely swallow; not wanting to go to sleep  for fear she would never wake up. The voice became louder after being told on one of her many nights in the E.R.when an unknown doctor walked over to her bedside and mechanically delivered the news that she had total kidney failure, and high blood pressure due to kidney damage and would have to go on dialysis. 

    Ironically the doctor that had so coldly given her his grim prognosis became the same doctor that put her on a very helpful medication called Cellcept, a drug usually used for kidney transplants and cancer treatment. The down side to the new treatment was that he also drastically increased the standard horrific prednisone that is commonly given to all Lupus sufferers. Her face and body "mooned" due to the heavy increase of steroids. Her hair also thinned rapidly while on the new medication, but her overall condition, and kidney function did in fact improve. She happily welcomed the possibility of wearing a fashionable wig on her now chubby little head over enduring the suffering she had been experiencing for so long.

    Years passed and she was tired of just maintaining a lifestyle that barely allowed her to struggle out of bed, and sometimes on rare occasions have periods of clear skin and minimal swelling. She wanted more, and she knew she could have it. She needed a CURE, A HEALING.  On her final attempt at reclaiming the life that was once hers she met Dr. Bush, a Yamaka wearing Jewish doctor who knew the power of God through medicine. He introduced her to a drug used for Rheumatoid Arthritis but not yet FDA approved for treating Lupus. It's name, Rituxan. A unique therapy that works by selectively depleting CD20+ B-cells, and their role in cancer and autoimmune diseases. She enthusiastically agreed to trying this therapy even though it carried the risk of death at an alarming percentage. This form of treatment was also very expensive about $9,000 per infusion two infusions are needed for a complete treatment. Luckily the drug company Genentech agreed to foot the cost of the entire bill and the road to recovery was ready for travel.  The first infusion lasted 9 hours the second was 8 hours. After being infused she felt incredible fatigue but she was more than hopeful.  In her heart and mind she knew that the risk she took to better her life was well worth it.

     In the coming weeks she noticed a drastic change in the amount of swelling episodes and painful redness in and around her joints. She became more flexible and her skin was clear again. She slowly weaned herself off prednisone and her doctors watchfully agreed to her decision. A wonderful decision because in the process of that one week she decreased her dosage she lost an easy 20 pounds!!

     But the prednisone seemed to have caused a whole other set of problems. She later discovered that the many years of taking prednisone had caused irreversible damage to her bones. She was later diagnosed with avascular necrosis, a cellular death of bone components due to blood supply.

     A crossroad was reached, does she live with her new found freedom of stability or go all the way seeking a complete sense of normalcy and life without pain.  She decided she would go all the way, so the next step in her journey was to undergo a Core Decompression, long tunnels drilled through the bone to create pathways for new blood flow. She also had her own stem cells taken from her body, spun and then reinserted during the surgery. A very new and innovative medical procedure performed by Dr. Harvey Montijo, a prominent surgeon located in West Palm Beach, Florida.  After the painful procedure, and months of therapy were complete she was able to walk again. The surgery was a success, but a short lived one. A year later the left hip began to give out and she knew the dreaded hip replacement she was previously told of was eminent. She was warned before hand that the Core Decompression procedure was just an option that might not work and that the left hip was very far gone. "But who wants to have a fake hip especially at such a young age?" she thought.

     After much consideration she did in fact have the hip replacement surgery which was accompanied by months of physical therapy. Doctors were amazed at the speed of her recovery. She attributed the miraculous turn of events to All Mighty God, her loving supportive husband, son, family, friends, and the amazing power of positive thinking.

     The She in this story is ME, Tracy Henry. This is the true story of how I survived this monster of a disease. If you see me today you would have never believed that this was once my yesterday. I am medication free and regularly monitored by all of my doctors who are truly stunned by my present recovery, and rightfully so.

      Your mind is a very powerful tool in your recovery. Without the will to seek out a happy fulfilled life your journey will be very difficult. Having a chronic ailment can cause your mind to become trapped in the web of depression that seeks to take hold of your soul.  So always remember that YOU ARE WHAT YOU BELIEVE YOU ARE! You are in charge of your fate. Never loose sight of your goals and what you are fighting for. Life is so precious that is why I fought so hard to keep mine.

-Tracy N. Henry