Living with Lupus: Twenty Years Later

It was April, 1989 when I was diagnosed with Lupus - I was 22 years old. I use to welcome April; I love the smell of rain as it washes away the grit and signifies the re-birth of life that dies once winter arrives. Of course, at that time I wasn’t allergic to pollen, the sun and everything else. My son was six and my daughter was three. I had no job and a failing relationship and I had not been feeling well for months. I was distracted and wasn't paying attention to what was going on with my body, attributing the signs to the stress of trying to hold on to the man I loved and finding a job and I had no energy for either. I had lost a baby around the same time a year prior when my water broke five months into the pregnancy, resulting in a severe infection and a forced delivery to save my life. I held Elizabeth until she died an hour and fifteen minutes later. To go through the pain of delivering a new life and watch it fade away in your arms is surreal; I couldn’t believe my child was dying in my arms and I was powerless to do anything about it but get to know her during her brief visit. Because she was so premature, her lungs were under developed and although I knew of cases where the babies were even more premature and survived, I tried but I failed to convince the doctors to take the same risk for her and she died as a result. All of the pain would have been worth it if the end result was something other than me coming home empty handed and carrying nothing but sorrow, confusion, anger and guilt. There were no solid reasons given to as to why I lost my baby but in retrospect, I probably had Lupus even then.

There really is no telling how long I have had this disease but I remember when it became clear to me that something was wrong with me. I was extremely lethargic and had no appetite. I wasn't motivated and I kept getting flu like symptoms, yeast infections, migraines, blotchy skin. I was light headed and my ears would ring and make whooshing sounds. I was going to a doctor who treated me with antibiotics and nothing else. The antibiotics worked for a short time but the symptoms would reappear and I would be back to square one. My checkups never went beyond asking a few questions and taking blood pressure and temperature. He never checked blood or urine and if he had, he would have seen that there was something massive going on and being young and naive; I didn't know enough then to ask. I was on Medicaid, so he wasn't interested in spending any real time on me and I felt that.

I was losing weight, something I was not happy about because my normal weight at that time was 95 lbs. at 5’ 2”. I was trying to motivate myself because I saw that my relationship was not going well and I wanted to be able to take care of myself when he was gone. I started to take walks and tried to eat more because I thought my unhealthiness was my doing. I was frustrated because I couldn't get anyone to take my concerns seriously, not my doctor nor my boyfriend, who accused me of laziness and exaggerating my symptoms to get attention from him.

I finally broke down, called my mother, and asked her to come over when I became too sick to care for my children. My mother and I have never been close so to ask her for help was a big deal but I had no choice. I explained how it was an effort just to fix the kids a meal and how I would get dizzy if I stood upright for more than a few minutes. I told her that despite my doctors insistence that it was the flu, I knew it wasn't. Instead of making me feel like an imposition, she found another doctor to see me the next day - a Saturday. During the examination, he took blood samples that would not produce enough blood. He looked at my mother and told her to admit me to the hospital immediately. While I protested leaving my children and going to the hospital, he explained that I had less than half my blood and that if I didn't admit myself, I was going to die - soon. I wasn’t even allowed to go home and pack and those who know me know that didn’t make me happy. I was admitted immediately and taken to a room where several doctors came to see me. I should have realized the gravity of the situation then because how many times does a Medicaid recipient go to the emergency room, get a private room immediately, complete with the undivided attention of several doctors? I was put on intravenous antibiotics and steroids. I remember being crazed and amazed at the urgency at which things were taking place. I was told that they did not know what was wrong with me but it was a toss between AIDS or Lupus. That was the first time I had even heard of Lupus

Five days later I was told I had Lupus, a chronic disease that compromises the immune system and like AIDS, was incurable. My boyfriend was understandably relieved it wasn’t AIDS but for me, it made little difference, it was a lot to take in. I had no blood for the blood samples because my body was destroying it. So I had two blood transfusions and was stuck and x-rayed more times that I care to remember. My doctors discovered that I also had Pericarditis, Colitis, severe dehydration and liver problems. After two weeks I was allowed to go home with a pile of prescriptions and my emotions were all over the place because I had been pumped up with steroids to stabilize my condition. I remember walking into my apartment and my whole world looked different. Everything was exactly how I left it but nothing was the same; my world had changed.  Apparently I wasn’t the only one that saw things differently because the next day, my boyfriend broke up with me . I wasn’t expecting that because he was so supportive while I was in the hospital but that was for appearances only. He could deal with dating a black woman with two young kids but he couldn’t deal with an incurable illness. I went numb because that was the only way I could deal losing my health and my man at the same time. My daughter went through a deep depression after the breakup, refusing to eat and she slept all day and cried for him all night for three days. Not conducive with my need to rest. I didn’t know that toddlers could become depressed but apparently, they can. That experience made me even more protective of my children and taught me to keep a certain amount of space between my children and my men. I didn’t want my children suffering anymore for my mistakes if they didn’t have to.

Eventually the Prednisone bloated my body and I went form a size 0 to a size 10. My hair fell out and my nails got dark streaks through them. I have both discoid and systemic lupus, so either my organs are affected or my joints and muscles. I'm blessed with a painful blistering rash that peels and covers me from head to toe and this causes hyper-pigmentation that has caused my skin to be permanently discolored. I have to wear makeup with a lot of coverage to conceal it so I don’t tend to show much skin as much as I would like to dress like a hooker. I had to forget about sexy clothing and lingerie much less be comfortable getting naked in front of a man. There are days that I wake up and I am already exhausted and depressed with the amount of work I have to put in to make myself appear normal to the public. I tried the “This is who I am, take it or leave it” approach but trying not to care ended after initial public reaction, particularly while trying to get and maintain a job. Like it or not, you are judged and then treated according to how you look but I knew that beforehand, it’s just more blatant now.

Lupus is a funny disease; it leaves you feeling as if you would rather die than live one more day with the medications and limitations but no one can comprehend the gravity of the situation because most of us look perfectly healthy. People are amazed when they hear about my medical problems. I constantly hear “Your so attractive” or “Your so energetic” and there are those who are skeptical because there are rarely any outside clues. Lupus is an invisible disease, you look perfectly healthy but you are far from it. I look young for my age, I have a petite, nicely shaped silhouette but I operate on a geriatric level. I don’t anticipate living to the ripe old age of 60 and honestly, under these circumstances, I don’t want to. What kind of shape will I be in? My teeth have deteriorated, I have had four hip replacements and I have osteoporosis because of the steroids that stabilize my condition when I flare or have severe allergies. I have asthma and have recently been told that not only do I have fibromyalgia, both of my knees and my right wrist have to be replaced, something that will not take place anytime soon because my previous employer canceled the health insurance. Along with the aforementioned ailments I have had a hysterectomy and I have Raynaud's Phenomenon.

I have spent my life not being able to do what a normal girl or woman would do; first with raising four brothers and sisters and then raising my own children, being a dutiful wife and the long list of restrictions given to me by various physicians. As a result, I tend to rebel but make no mistake, I pay for it, and yet somehow it’s worth it. My philosophy is; I would rather live a short life and lived life than live a long life and not lived. I create memories; I live each day as if it is my last; perhaps that’s why I no longer have a sense of urgency when I see my life falling apart. I get so tired of fighting mortality and the obstacles that life throws me that I almost wish it would implode.

It’s very difficult to let people get close to me and when I finally broke down and let someone into my home and into my heart, I saw it as a blessing, an end to all of the pain and suffering and loneliness; he was my reward and I felt extremely lucky. After 7 ½ years we went from nothing and came out with two business, several houses, three cars and three pets along with the three children we already had between us. After looking at me lovingly and begging me to trust him, to let him take care of me; he threw me, our life, our family away like a dirty diaper because he wanted more children; something he knew I couldn't pull off when he met me. I am a confident person but no amount of self confidence prepares you for being spirited away from your friends and family to a place where you know no one, in support of your husband’s career and coming home to a cowardly, "Dear John" letter and a dead rose.

I went through two hip operations alone in a state where I knew no one. I didn’t get a visit, a phone call, a flower not even a card from my husband. I was forced to drive myself home from the hospital after my second hip operation in four months, using my left leg on the pedals because I had no one to drive me home. I still continued to run two businesses and took care of three animals alone while my husband gallivanted around Scottsdale with some bullet ridden stripper from 8 Mile. Meanwhile, his lawyer was attempting to force me out of my home. After that, I couldn’t look at a child for a long time without fighting the urge to run it over with my vehicle. To this day I still have moments where I have to force back tears when I see animals because I lost my babies just like I lost everything else. I can never have the responsibility of owning a pet because the experience of being responsible for yet another life and failing again to protect them was so traumatic.

Ultimately, I have no one to blame but myself. If I had stuck to my initial plan of being alone and relying on no one, I wouldn't know what it was like to be loved and feel safe and accepted. I got cocky. We made plans and they came to fruition; I have never worked so hard in my life and I have never been so happy and for what? Ignorance is bliss.

During my tenure as a lupus patient, I have been educated to the ways of the medical community. The right to decent health care is in the eye of the beholder. Sorting out which patient gets what quality of care, or if they get it, depends on whether or not they have insurance and what level and even then, quality health care is not guaranteed. I learned that when I lost my daughter and I have lived it several times since then. Elizabeth could have been saved they just decided to play God and didn’t think she was worth it. There are many options when it comes to treatment but you might not be privy to that information if you don't have the correct level of coverage. I once had a romantic vision pertaining to doctors. I saw them as ultra sensitive beings on a mission to save lives and that was solidified by the Hippocratic oath. I channeled Biggie Smalls and realized “It was all a Dream”: It took me a long time to realize that there was no humanity. It was erased, then replaced with the bottom line. I am extremely disgusted and distrusting of the medical community. I understand that health care has changed and there are greater pressures to produce revenue but health care has turned into a privilege not a right. I do not understand how you can have life threatening symptoms and go untreated because a corporation owns the hospital and your inability to pay does not mesh with their wish to make a profit.

I have been dealt a hand I don't deserve or understand and my efforts to rise above it have been disastrous at best. I am in a perpetual vicious circle. My ex husband knew when he left me that it would destroy me in many ways; he said so himself. He knew when he stopped paying alimony that he was handing me a death sentence and he didn’t care. I have to choose between medication or food or bills and I have been doing so for the last three years. I can usually juggle but if anything happens such as car issues or an unexpected bill, I am screwed. I am always in danger of losing my apartment or car or having something shut off because I have to pay cash for medical care. I can’t afford my bone builders, blood pressure or pain medications and it can be difficult for me to stay healthy. There are many days that I wake up in extreme pain and seriously wish I could curl up in a ball and die just so I don’t have to experience another day of fighting for relief and dignity. The only reason I am still fighting is because my children would be devastated if I didn’t.

When I was a young mother and still believed in God, I would pray to stay alive long enough to see them grow up to be productive adults. I no longer pray but I hope that I didn’t pass the disease along; particularly to my daughter because women are more susceptible than men and every female in my family has lupus or fibromyalgia. While both of my children have gone through this journey with me, I have to wonder what they have had to endure growing up in a household where their mother was constantly sick and working to keep a roof over their heads. I am sure they have been traumatized in ways that are not apparent but we are close and they love their mother and ultimately, if I died tomorrow; I would be satisfied that I have done my job and perhaps that was my only purpose.

Twenty years later: What have I learned?

I am not normal, I will die alone, and I will die young.

I will never trust another man with my life and heart again. I go into relationships knowing that I am disposable and I am only there to get them through something or until something better comes along. I go into relationships knowing that I will be the one to get hurt. It doesn’t matter how beautiful I pretend to be on the outside or how beautiful I am on the inside. The fact that I am intelligent, funny, caring and strong is irrelevant. Men are visual and they have many options. The men who accept my baggage do so because they know I have no expectations and I don’t expect monogamy. I know they are only visiting; they have no intention of staying and there are no hard feelings. I take what I can get and for the most part, I am treated well and then they disappear, usually without a word. I don’t get to keep them but I do get to keep the memories – that seems to be enough.

I have learned that the more I focus on myself, the healthier I am. When I am self-consumed I take better care of myself mentally and physically. That usually translates into being superficial and self absorbed but I am not a selfish person by nature, I was breed to take care of others whether I wanted that or not. I remember cringing every time my mother became pregnant because that meant that going to sleep over’s and roller skating parties was impossible or deemed not worth the trouble once she made a big deal over how inconvenient it was for her. Learning to focus on me has been difficult because I don’t want to ‘inconvenience anyone but it dawned on me that no one had a problem inconveniencing me so I learned that you teach people how to treat you. If you teach people that they can walk all over you then they will.

I learned to accept the hand I was given. Do I understand or think I deserve this disease and all the other maladies that go along with it? Certainly not but there isn’t much I can do about it except what I am doing. I can’t cry or whine about it anymore, it’s not attractive and it ruins my makeup. I can’t question it anymore simply because there isn’t an answer – it is what it is.

My friends are fair weathered and they come and go depending on whether or not I am healthy or financially stable enough to go do what they want. I learned long ago that I am an imposition and so for the most part, if I am sick, I say nothing; no one wants to hear it. I do spend a lot of my time alone and I am comfortable with that - perhaps too comfortable.

There is no God. I grew up in an militantly religious household and there was nothing Godly about it. I believe there is something called common sense and a sense of right and wrong and you as a human being have to decide how to handle adversity. No one is going to save you, there are no Angels ready to hand you a miracle if you read a book, follow rules or pray long and hard. Some things are set in stone and the more you try to control a situation, the less control you have.

I would be a different person. I would dress much more provocatively because I have the body to do it. It’s comical that I look the way I do yet have to hide it; it’s absolutely hilarious. I would be a lot less compassionate and less of a fighter. I would be extremely shallow, self absorbed and arrogant. I would probably be a trophy wife and miserable. I have learned to take joy in nothing at all. It’s a gift.