Living with LUPUS
by Lisa Maria Datcher
The year was 1993. Indian summer, a beautiful, balmy evening and I had just arrived at my mother's house from attending a baby shower. I was sitting on the couch, Indian style, telling momma about the shower. We talked for a few hours and then we exchanged goodnights. The next morning, there was an annoying ache in my ankles. I figured it must have been the way I was sitting the night before so I didn't think anymore of it. I spent the day out and when I returned I nestled on my favorite sofa again and fell asleep because I was extremely tired.
The next morning, something definitely was wrong. My neck felt like it was broken. I couldn't move it at all without experiencing the worst pain I had ever felt. I was crying, actually shrieking out in pain and fear. Seeing momma and my brother running into the living room where I was scared me too. They helped me sit upright because I couldn't do it on my own.
Momma called the doctor and made an urgent appointment. Upon arrival my doctor took my vitals and went through the mundane routine of a doctor's visit. He asked me if I had any changes in my health recently that could have triggered this condition. After thinking about it, I told him that I noticed that I had been feeling unusually tired and that I had aches in my legs from time to time. He performed routine lab work to try and pinpoint the origin of my pain. As I moved around, I felt a little better but t he pain even though subdued, was still present. He said suggested that I take some time off from work and school so that my body could get adequate rest.
A few days passed since my appointment and I was both nervous and frustrated. I was a stay in school student at the time and I had just started working part-time. I thought to myself, great.... The school year is just beginning and I can't go. Increasingly frustrated with the long waiting and no clue of his findings, I began calling him every day for results. Finally I was able to reach him and he said he needed to run additional tests because the initial tests were inconclusive. He did however manage to throw out two "possibilities", Rheumatoid Arthritis and Multiple Sclerosis. I MUST be dreaming I thought to myself. I was in school and I was determined to excel in every area so I knew this couldn't be happening to me. No. Not Lisa. Not now! Mad as hell, I decided to give that doctor the boot and find another one, and I did.
This new doctor of internal medicine administered a series of tests including extensive lab work. He wanted to pay close attention to the ANA test. I didn't know ANA from DNA, I just wanted to know what was going on inside me and I wanted to know NOW! Two LONG weeks had passed when my new doctor contacted me to come to his office. I felt that sick feeling you get in the pit of your stomach when you know something is wrong. When I arrived to his office he gave me the news that changed my life forever.
Your lab results are positive for LUPUS.
LUPUS. How in the world did this happen? No.! This quack is wrong! There ain't no way I have anybody's LUPUS and this sorry *&%^ is not going to make me believe it! I stormed out of his office in pain and numb. I headed back to my mother's house Momma was always optimistic about everything so she had already planned how everything was going to be all right. Everything wasn't going to be all right.
See, I had already researched autoimmune diseases to include arthritis after the first doctor offered his "hypothesis". I read about symptoms, treatments and prognosis. Just a few short years ago, physicians gave LUPUS patients maybe 10 years and BAM!! that was it!!-time for a permanent dirt nap. Fortunately, with technology and more advanced treatment available, the prognosis has changed for many LUPUS patients where some of them can lead normal lives. My doctor provided me with literature that illustrated what LUPUS is and what issues I may face with this disease.
I have been hospitalized more than enough times for LUPUS related illnesses. The most severe being pleurisy and then pneumonia. The pleurisy episode was the worst episode I have ever had. Every time I took a step, every time I breathed- it was dreadfully painful. I had to drive myself to the hospital and I still don't know to this day how I managed to do so other than GOD was at the helm.
At the hospital, the triage nurse told me my temperature was 103.5 degrees and I was immediately admitted. After an aggressive therapy of antibiotics and the steroid prednisone, I began to feel better. The hardest thing for me upon diagnosis was accepting that I had to live with this. I denied it for a long, long time. Because of this denial, I would refuse to take the medicine because of the fear of weight gain.
My stubbornness resulted in my barely being able to walk and care for myself. I tried with all of my might to fight LUPUS on my own but I soon learned it was much too powerful. My efforts to return to school and work backfired in my face and that led to depression. I had to give up my apartment and move back home with my mother. Just as fast as it seemed traveled to the top of the world or so I thought at such a young age, I witnessed my world crumble right in front of my eyes and there wasn't a damned thing I could do about it but watch.
Unless you have lived with the pain and limitations resulting from LUPUS, it is IMPOSSIBLE to "know how we feel". People who are ignorant to the disease may sometimes view the LUPUS sufferer as lazy and/or anti-social. The most common phrase I hear is "but you don't look sick".
UNFORTUNATELY, this disease when active, limits what we can do no matter how much and how hard we try. I have had fits of rage, premonitions of death, voices in my head taunting me to kill myself. Sometimes I feel like I am in an emotional battlefield with no ammunition. I am unsure how I am going to feel from day to day and day to day I am afraid. I am afraid that at any given moment, my medication will no longer be effective and that I will be confined to my bed or hospitalized. I am extremely embarrassed when I am experiencing a flare because I hate to ask for help.
Often, I secretly wonder if people notice when I limp or when I have trouble using my hands. There have been times that my hands were so swollen and numb that I could barely wash my hands or even wipe myself after I used the restroom. As I think back, I recall one winter night I thought I was going to freeze to death because I just could not get up to adjust the temperature.
My blanket had fallen on the floor and the only comfort I had was a thin sheet that I managed to pull over me with my teeth. Driving was increasingly difficult during the onset of a flare as was getting in and out of the vehicle.
There have been times where I have literally fallen down in the bathroom and in the tub because I lost my balance. My body is laden from bruises as a result of my falls. These feelings of helplessness disgust me with all of my heart because it takes me to a place I have tried to forget but can't. The place it takes me is my late mother's house-her bathroom to be exact. Crystal clear is the image of the awful, helpless look in her face when she became so weak she couldn't help herself and relied on me to wash and clean her. I reluctantly remember the look of shame Momma had and the look of her not wanting to be a burden on me. I loved Momma more than life but I hated her for being sick. I know that sounds harsh but it was the truth at the time. I was angry at Momma for not being the Momma I remember. She too hated falling ill because she ALWAYS cared for herself and everyone around her. I simply LOATHED seeing her so weak and feeble and every time I hurt I am reminded of that look in her face.
Sometimes, I wished I would never wake up again because the pain was too much for me to handle. I felt like my dreams were merely pipe dreams. Sometimes I feel like I am the ugliest creature on earth with fluid pockets and fat everywhere. During flares my thin hair thins even more. I look awful in my clothes and I sometimes wouldn't go to work or out because I hated how I looked and felt. I am afraid that one day I won't be able to work. How will I survive?
Then I would cry. Sometimes I cried myself to sleep. Other times, I would have to dope myself up with sleeping pills just so that I could go to sleep. Sometimes I am afraid to sleep and sometimes I am afraid to wake up. Please somebody help me! Please!?!
The year is now 2008. 16 years later, I am still living with LUPUS and still there is no cure. I have been on prednisone, a corticosteroid for the entire duration. This pill, not even the size of a tic-tac is the only thing that helps me to achieve basic functions. I have tried other therapies but they haven't worked for me. Prednisone is very powerful but the side effects can be just as dangerous. Over the course of these years after diagnosis I have gained over 100 pounds, lost patches of hair and most recently, some of my teeth. My watching my physical changes has been a pendulum of emotions from one extreme to the next with the flares and emotional roller coaster ride.
There have been ups and downs, good and bad days, smiles and tears. Reflecting on the past, I regret not accomplishing many things I began such as my college education. After I got sick, I lost the desire and could never muster up the will to go back and finish. Through the grace of God, I have always held a job. Actually, for most of my adult life, I have worked two jobs. In November of 2000, I finally landed a position in my career field.
I once had aspirations of being a Federal Agent but because of my health, I never pursued that dream. Not wanting to give up totally on that dream I decided to do the next best thing and that is to assist them. I absolutely love my job although it can be very demanding. I have to mentally push myself to the highest level possible so that I remain in control of this disease (at least as much as I physically can). I have learned through faith that we all face trials within life and none of us, NONE OF US are exempt from pain and suffering. I continue my medication and have incorporated exercise in my routine. There are times when I don't have the energy to stay on the routine so I do what my body tells me to do and I rest. I continue to pray and stay as positive as I can.
It isn't an easy task especially when people to include family, so-called friends and some employers are cruel and insensitive to the point they mock your changes in appearance; criticize for what you cannot do; seek ways to jeopardize or cause adverse actions in employment; and have watched you suffer over the years to never offer to contribute a penny towards the cause. The bottom line is, nobody understands or cares about someone else's pain or trials unless they are directly related and that helps to keep things in perspective. Sometimes, it is all so overwhelming and when I think about everything collectively, I often get depressed. That is inevitable with LUPUS and will continue to happen as long as the disease is active. I rely on GOD for support during rough times and you know what? I am still here fighting the fight!
To my true remaining family and friends, I say, "I know I have put you through changes but please, hang in there with me". "Momma, I know you are looking down on me and I feel your presence urging me to stay strong". "For you, I will! I won't give up without a fight. Just like you Momma, I will fight to the end." The Alliance for LUPUS Research has initiated a nationwide Walk program that is designed to raise both awareness and dollars for the fight against LUPUS. For the past several years, I have made several tenacious efforts to have this disease recognized as AIDS, Cancer, Diabetes and now Autism. Though my efforts are tireless, not much progress has been made. I have contacted local radio stations, magazines, newspapers and social organizations geared toward African Americans and received little interest for sponsorship and/or donations. This is from our own community! Those that have contributed and made commitments to do so, I thank you very much for your support. It is my hope that media networks would include in their rotation a PSA on LUPUS as they have with the aforementioned conditions.
Not many people have heard of this disease even though it affects hundreds of thousands of people, more specifically, women of color. Further, since not many "household names or celebrities" have been associated with LUPUS, this disease has really been placed on the back-burner which results in the lack of funding, incorrect diagnosis and late diagnosis after there has been organ development (which is often fatal). LUPUS is devastating and it affects mostly women and women of color. It is reported that every 30 minutes, someone is diagnosed with LUPUS. Every 30 minutes!
"WALK WITH US TO CURE LUPUS WALKATHON"
You may also send donations by check directly to the Alliance for LUPUS Research
Please be sure to include my participant number, DC-510000, on the memo line of any check donation.
Donations are tax deductible - the TAX ID for ALR is 58-2492929.
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For more information on LUPUS and how you can help, please visit the Alliance for LUPUS Research on the web at www.LUPUSresearch.org or call them toll free at 800 867-1743.