At 26 years old, married for three years, I was diagnosed with Lupus in 1976. Living with Systemic Lupus Erythenatosus (SLE) has been a part of my life for 32 years. Unlike most indicators commonly recognized in the early stages of the disease like the facial rash and ongoing fatigue, my symptoms manifested most often with warm sensations and fluid retention in my right leg, along with sensitivity to cold weather, characterized by a purplish discoloration of the tips of my fingers. My diagnosis was confirmed by a skin biopsy on my upper inside arm. In the early years of the disease, my flare-ups were minimum and mild, thus requiring no medications. It was only when I tried to start a family that I realized the many facets in which this disease can alter your life and how you live it.
Amid physical examinations and tests, I remember the doctor saying I would probably not be able to have children because of acute chronic inflammatory complications. In addition, he advised me not to try due to the stress pregnancy would have on my system. I remember saying to myself, as we all do, “Yeah, right! I’m 28 years old, still feeling good, energy to burn” but little did I realize that the unpredictable characteristics associated with Lupus had already begun to attack my body. In my early thirties I underwent a total hysterectomy. I don’t think you can ever overcome the disappointment of not having a child of your own, but, the Lord has blessed me with a fulfilled life involving motivating students of all ages in achieving their aspirations for learning and helping them to become successful in attaining their personal goals.
It was during this time that I started having joint pains, sometimes in my shoulders, elbows, hands, and knees. In the beginning my discomfort was moderate and varied in gradual stages that required taking Motrin/ 800mg tablets three times a day. Eventually the pain got worse, including periods of intensity resulting in high dose treatments of prednisone. Yes, with the moon face, fat cheeks, weigh gain, and the little hump that appeared on the upper part of my back, I became unrecognizable. Many times I was overwhelmed by the changes in my physical appearance. And yet, there is an underlying strength that lies in all of us; it’s called FAITH. Faith empowers and propels me to move forward with the belief that everything is going to be all right.
It is 1987; I remember noticing periods of memory loss, forgetting the simplest things and then one day at work I was walking down the center of the hallway and realized I was leaning along the side of the wall; my equilibrium was impaired. The Lupus was attacking my nervous system, which required aggressive cytoxan treatment for seven months and a one-year medical leave from work.
It was one of the most terrifying experiences with the disease; suddenly I no longer had control of my life. The first two or three months of treatment were frightening; the simplest tasks were challenging and took a concerted effort to complete. My verbal expressions were difficult to understand, I had hand tremors, making it difficult to eat, and many times I was confused, not remembering simple conversations with friends and family. Fatigue and sleepless nights led to a prescription for sleep medication.
The emotional phases and ups and downs of dealing with the disease were extremely overwhelming. I had moments of fear, doubt, and frustration, all of which may be natural, but nonetheless, it is not easy.
The one thing I have learned from dealing with my flare-ups, no matter how severe they are, is to free myself of all negative emotions, to focus on my strengths, and to maintain my self-confidence and self-esteem no matter what obstacles I face with the disease. God never gives you more then you can bear; trust in him and you will never be alone. Do what ever you need to do. As hard as it was, for me that meant maintaining my appearance and finding things to do, no matter how small the task. Family support, friends, and my faith were my anchors that keep me strong.
During the following years, I had my spleen removed due to high platelets, and in addition, I developed bruising on the inner thigh and on back of my legs. Because of the autoimmune complexes caused by the disease, my risk of infections has greatly increased, resulting in the need for yearly flu shots and for pneumonia shots every five years. Later, I was diagnosed with a pulmonary embolism, a blood clot in my lungs. I will be on blood thinners for the rest of my life. Having lived in a high altitude state for nearly 29 years, I now require oxygen on a daily basis. I am currently undergoing treatment (Revatio) for pulmonary hypertension, a condition that increases the workload on my heart.
And yet, I’m still here. I wake up each morning and thank the Lord for all he has done for me. I’m still working, a little slowly sometimes, tired yes, but I can’t stress it enough: it is faith and prayers that have sustained me, motivated me, and given me strength to cope and make it through any and all obstacles. I am grateful for the life God has given me.
May the Lord bless you and may you know that you are not alone.