After 6 days of being hospitalized without knowing why I was so sick, I honestly thought I was going to die. I was angry and mostly scared to death. After numerous tests, multiple blood draws and my chest feeling like it was going to explode, one of my many doctors finally had some news. When I received the diagnosis of having Systemic Lupus Erythematosus (SLE), I was so relieved. If it were not for the fact that I was paralyzed with pain and in the hospital with tubes running everywhere, I would have jumped up, danced around the room and kissed my very attractive infectious disease doctor. Why was I so happy you ask? It was because prior to putting a name to my condition, I thought that I was out of my mind. I thought that my body had completely betrayed me. Well, my body had in fact betrayed me, but at least getting a real diagnosis meant that I was NOT crazy.
At the end of it all, I spent 31 days in Ingalls Hospital in Harvey, IL a south suburb of Chicago. I showed up in the ER with pericarditis with effusion (inflammation of the heart sac filled with fluid) & pleuritis (inflammation of the lung sacs) that led to 2 two heart surgeries. I contracted a staph infection from multiple blood draws. I endured a collapsed lung; spent a total of 15 days on the critical care unit on two separate occasions (7 days the 1st time, 8 days the 2nd time) and had gone through lots and lots of physical and emotional pain. I watched my parents fall a part emotionally, particularly my father. I had been faced with my own mortality at such a young age. With what I went through then, at my age now, the odds that my body would be able to survive such trauma and infection would be slim. Fifteen years later, I have finally decided to chronicle that experience and reflect on the journey.
Typically, the road is long and hard for women like myself who come to be diagnosed with Lupus, Multiple Sclerosis, Scleroderma, Chrohn's Disease or the many other auto-immune diseases that mimic one another in many ways. The average length of time that women suffer before a Lupus diagnosis is given on average is 4 to 6 years. My case was not the typical case by any means. It took me to get to the other side of my diagnosis to really be able to reach back and understand what was happening. My journey from noticing the subtle signs all the way up to hospitalization and diagnosis was about 9 months. It was swift. It was painful. It almost killed me. As I've said, it has been nearly 15 years and it's only recently that I am able to share my experiences. It has been through much faith, maturity and mentoring that I've come to realize just how important sharing is for healing--not just my own--but others.
When I think back on all of the signs I ignored, all of the pain that I tried to suppress and the road of denial that led me to death's door; the only thing that I've been able to come up with is YOUTH. I was young. I was strong. I was active. I was healthy (as far as I knew). What could have possibly been wrong with a 23 year old? I was a graduate student in my 2nd semester of grad classes at FAMU. I knew that I was busy. But by my estimation, I certainly was NOT stressed out. There is a distinct difference. Even in my young 20's, I knew the difference. I was enrolled with 12 credit hours, which is one class or 3 credit hours above and beyond full time for a grad student. But that was okay. Busy was good. As far as I was concerned, there was very little stress in my life at that time. I had even quit my part-time job to free up some time just to be a student and focus. Life was as balanced as it was going to get for me.
I was a graduate assistant teaching as a part of my graduate studies. I'd head to campus everyday either for my own classes or to teach. I'd wake up some morning very stiff, achy and unable to fully use one of my arms. Big deal. I told myself that I probably just slept all wrong. Some mornings, I'd wake up stiff and not able to put my full weight on one of my legs. I told myself that I'd probably bumped my leg or my knee or my foot getting in or out of my car. Some mornings, I'd wake up and physically could not get out of bed. I mean that literally. I would be awake. My mind would be alert. My eyes would be open. All signals would fire. My brain was sending the message to my body to move, but my body was in utter defiance. At times I would feel paralyzed. Some mornings, it physically took me 30 minutes to drag out of bed. Other mornings, I popped up like any other normal healthy day.
Out of all of the quirky things that were starting to happen to me, I convinced myself that it HAD to be all in my head. My issues were simply a function of me not taking care of myself properly. I was told by family, friends, professors and even myself that I was stressed out, even though I didn't feel stressed out. I was told that I needed to eat more vegetables. I was told that I needed to drink more water. I was told that I needed to take vitamin supplements. I made myself believe that living the life of a graduate student had very little balance. Late night study groups, sporadic classes, inconsistent sleep and a "so-so" diet were all my enemies. Basically, the notion of something physically & medically being wrong with an otherwise healthy 23 year old was just not possible. I believed it all. Young people don't get sick.....right? The initial physical hardship was just beginning.
(to be continued)
I remember, I didn't understand to say the least.I blew it off,"awwe she will be alright". I remember you joining a gym, eating better...then you disappeared! I thought you were the luckiest girl in the world, ohhhh how I wanted your life..PROUD is a understatement! I remember the call, my mouth just dropped! All I can think of was Lord I don't understand..Now 15 years later, Ive learned God has a way of individually showing us who's God!, and that HE has complete control.
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