Saturday, April 27, 2013

Dr. What's Her Face...

"Give her some Toradol in her I.V. and send her home. I think she's overreacting. DO NOT prescribe her any pain pills."

Those were the words spoken by the ER doctor in Milwaukee about 4 weeks before I found myself in complete crisis, which led me to drive home to Chicago and be admitted into the hospital for 31 days. It's amazing how the human psyche works. Those words have been etched in my mind for 15 years. It has only been in the last 5 or 6 years that I've been able to heal and get some real understanding behind the words she spoke on that day. This woman was mean, insensitive, crass, tactless, cold hearted and unprofessional. I understand that all of the words I just used to describe this ER doctor pretty much mean the same thing. The descriptive "over kill" is intentional. I wanted to punch her in the face...HARD. I used to know her name. For a long time, I remembered that woman's name. I'm glad that I've forgotten. It's part of the healing process. I'll get back to doctor "What's Her Face" in a minute...

About one week before my visit to the Milwaukee ER, the chest pain subtly started to happen. I was managing the pain as best as I could for about a week. Then all of a sudden, I was at work at my desk and my chest started hurting so badly. I was screaming out loud at my desk. I was heard all across the building. I honestly felt that I was having a heart attack. It felt like an elephant was standing on my chest. That day, I left my job in an ambulance headed to the emergency room. Yes, the young 23 year old intern was leaving in an ambulance. It was embarrassing to say the least. I became a spectacle. I mean, I was scared and in pain, so the ambulance ride was warranted, but no one wants to be made a spectacle of. I was having other issues before the pain erupted in my chest, most of them were arthritic, but the arthritic pain was fleeting. The immediate concern in that moment was the chest pain. When I was admitted to the emergency room, I was not asked any questions about any other issues that may have been going on with me. It did not occur to me to offer up any of my other issues I was having. In my mind, they were pretty much all mutually exclusive.

For a few months before the point of crisis when I was still in Florida at school that prior spring semester, I had trouble swallowing. It was as if I would have spasms in my throat. Food had a hard time going down, almost like it got stuck on the way down. Sometimes, swallowing was so bad, I would only eat soft food that went down easy. I never really cared for eggs. But I started eating eggs. Sometimes I would eat grits, oatmeal and noodles for any meal. Eating bread and meat and other solid foods proved to be a hardship. It got so bad, that I kinda just stopped eating regularly. I would skip entire meals. By the time I started my internship, I was probably down 10 pounds, which is a lot considering I only weighted 145 to begin with at 5'9" tall. I was down to a size 6 when I was normally a size 10. It hurt to swallow. I had a remedy for that; albeit a stupid remedy, but a remedy none-the less. I didn't eat! How 'bout that?

It is amazing to look back and realize that I started to fashion my life to suit an illness that I didn't even know that I had. It was happening that spring semester before I started my summer  internship in Milwaukee. I was doing it a little bit at a time and not even realizing it. I made excuses for the pain that just showed up in my joints and extremities be it my legs, arms, elbow, knee or whatever. I couldn't swallow and get food down without being in excruciating pain. Therefore, I stopped eating regularly. At times, the fatigue would be so bad, I started to miss my office hours on campus as a graduate teacher. I started making my students drop off their assignments at my townhouse. If they wanted a grade, it was in their best interest to bring their work to me. I missed attending a few of my own classes because I couldn't get out of bed.

One time while I was in school that spring semester, I was so tired, my mind couldn't process how to get off the couch and get to the bathroom. I was sitting in the living room of the townhouse. I was just sitting there. I can't even recall if the television was on. I don't think that it was. I do remember that I had been gone all day and when I got home, I plopped on the couch. Going up the stairs to my room wasn't an option at that moment in time. My room and bathroom were up a very long flight of stairs. My knee was swollen and the fatigue set in like rigor mortis. I actually contemplated urinating on myself because I could not find the strength to get up and off the couch. My roommate was not home. After sitting there for hours, I managed to crawl on my hands and knees to her bathroom on the first floor from the couch. I cried while doing it. Then, I crawled out of the bathroom to the bottom of the stairs attempting to make it up to my room. I could not "will" my body to make it up the stairs. I slept at the bottom of the stairs all night in my clothes. What was crazy about that experience was that when I woke up the next morning, my knee was no longer swollen and I could actually get up the stairs. It was as if what happened the night before never happened. That day was a good day. I still didn't know or understand that I was in trouble. How does something like that happen and I NOT know that I was in trouble?

Now back to doctor "What's Her Face", that lovely ER doctor in Milwaukee who was adamant about sending me away without any pain pills. Through my healing process, some years ago, I faced that experience head on. I gave that doctor a measure of grace that I would want given to me if I was operating out of ignorance unintentionally. Believe it or not, for the better part of 8 or 9 years, I was carrying around a lot of anger simply because of how a complete stranger, but a medical doctor no less, treated me in my time of crisis. Let me just say that I'm sure that doctor "What's Her Face" was an experienced doctor. I'm going to give her the benefit of the doubt and say that she was likely very competent. In all the adjectives that I used to describe her "not so shining" bedside manner in my opening paragraph, I never once said that she was incompetent. Hey, I watched the NBC television series 'ER' all the years it was on air. I get that in any emergency room in any city across the country, nurses, doctors and all health care providers see a lot of nonsense, deception, fraud and experience people who are hypochondriacs as well as people who are seeking drugs because they are addicts.

It is safe to say that doctor "What's Her Face" made a BAD BET on me. I was young. Young people don't just get sick and have indescribable chest pain...right? All of my vitals were okay at the time. My blood pressure wasn't high. If I am remembering correctly, they even took a chest X-ray. They definitely did an ECG. It all came back fine. The universal experience in most emergency rooms is if you are not shot, stabbed or bleeding profusely, then you are NOT a priority. Maybe that's the way it should be. As I reflect, doctor "What's Her Face" had her staff perform a fairly decent work up on me. However, because I was young; because I was having this acute pain in my chest that I could only really deal with by taking shallow breaths, which made it appear that I was hyperventilating; doctor "What's Her Face" decided that I was engaging in trickery...chicanery. Package that up with the fact that my vitals were fine; she decided I was a faker, a drug addict probably looking to get high. Oh, and by the way, my manager was there with me the whole time. I felt like a fool being treated the way I was treated. I was wondering what my manager thought of me; the "lemon" of an intern the company invested in. This investment was not panning out for them.

Because I was screaming in pain and could not breath normally, doctor "What's Her Face" told the nurse on staff to give me some IV pain meds. I'm sure that measure of mercy was more self serving to the staff in order to shut me up. Doctor "What's Her Face" decided that giving me the I.V. was ALL she was going to do for me. After all (in her mind), at least I was one of those "fakers" who had insurance. I was still on my dad's insurance plan as full time student at age 23. The least doctor "What's Her Face" felt that she could do was give me something to address my immediate need. The problem was this: A few hour later when IV meds wore off, I was right back to square one in pain alone in my apartment eating Alleve and Tylenol like M&M's. 

My experience in that emergency room was a grand example of faulty diagnosis for people presenting with symptoms of Lupus and possibly other similar autoimmune diseases. This is an example of indifference, supposition but mostly lack of empathy and a disinterest in looking beyond the surface. All that said, my experience on that day is all too common. I wasn't the first to have an experience like that. I won't be the last. If my readers have not figured out by now, THIS experience was the main reason why I chose to drive 2 hours home to the south suburbs of Chicago from downtown Milwaukee half dead before I would have EVER walked back into that emergency room or any other emergency room in Milwaukee feeling vulnerable and being alone. This was a grave "miss" on the part of doctor "What's Her Face".

Through God's grace and my own subsequent education about my condition, all is forgiven...

Thursday, April 25, 2013

Don't Ask....

"As long as I am very still and as long as I breathe shallow breaths, I can make it. You can do it Crenee. Just be still. Don't laugh. Don't sneeze. Don't make any sudden moves. Put your hands on the steering wheel at 10 o'clock and 2 o'clock and just drive. Wait a minute...why am I sweating? It doesn't matter. I just need to make it home. God please let me make it home."

Those were my thoughts when I was in total crisis. In that moment, I realized that if I didn't make it home to the south suburbs of Chicago to my parents and to the hospital, something very, very bad was going to happen to me.

I woke up that morning in Milwaukee, WI feeling especially awful. This was by far the worse day. With every breath I took, it felt like hot, sharp knives were stabbing me in my rib cage. It took me 30 minutes to sit up in bed. For the past 4 weeks, I had to sleep propped up because the pain in my chest was crushing. Sleeping sitting up was the only thing that brought me comfort. I had access to several sample bottles of Alleve before Alleve became an over the counter medicine. I was dating a pharmaceutical sales rep at the time.  I was eating the Alleve like candy along with any other over the counter pain reliever. That was the only way that I knew how to take the edge off of my chest pain. As soon as my eyes opened, I was looking for my sample bottles and the cup of water I kept by the bed.

After I very carefully managed to sit all the way up and swing my feet across the bed and put them onto the floor, it probably took me about another 20 minutes to make it from the bed to the bathroom. I was sure to be at least 90 minutes late to work ( at least being the key words). I was on a graduate internship at Wisconsin Electric in the summer of 1998. My morning was off to an abysmal start. To add to my already troubled morning, I had to do the usual morning "maintenance", which was to wash my face, brush my teeth, shower, put on lotion & deodorant, get dressed and flat iron my hair. Yes, the hair had to be straightened and styled. I had just gotten it done at the salon the day before. Clearly, I had my priorities in order. Just thinking about all the simple things that I needed to do to get prepared for my day was exhausting. It made my body & my brain hurt. I cried sitting a the edge of the bed. Then I realized that crying was a very bad idea. It only made my chest and rib cage hurt even worse. I pulled it together quickly.

I had to be careful of every move. I needed to conserve energy. On the way to the bathroom, I realized that I needed to call my manager to tell him that I would be late (again). I had to think long and hard about making that call. I had to use my breaths and my words sparingly. At that point, I couldn't complete a sentence without being exhausted and fully winded. I made the call. My manager didn't sound surprised. He told me to take my time. I almost told him that I was not coming. My performance was suffering and my attendance record had been spotty. I was in the office everyday, but almost never on time and I was leaving early because I wasn't feeling well. Mornings were hard. I did my best to press through everyday even though my condition was worsening. On this day, I knew there would be a reckoning.

While in the bathroom, I had the strangest feeling come over me. To this day, that feeling is very difficult to articulate. The closest I can come to describing the feeling is that it felt like I was going to loose control of my all of my bodily functions. For a split second I almost felt like my spirit was separating from my body. Sounds weird...I know. But that's the best I can do with the description. I continued to press on with my bathroom activities. After all, I had to get to work.

Just 3 days before, I bought  my first brand new car straight off the lot when I was home in Chicago for one of my doctor's appointment. Purchasing my first car was a grand accomplish for me. It was my first adult purchase and establishment of credit. I was slated to graduate with my Master's Degree in December of 1998 with a great job offer with some big company. The 1998 Toyota Corolla was my early reward. I made it out of the house and into my brand new car. I was clean, dressed for work and my hair looked very close to what it looked like the day before after I left the salon. Although I felt like death warmed over; although I was moving at a snail's pace, I thought I was looking good in my new car with my freshly done hair.

I arrived at the parking garage in downtown Milwaukee. Because I was 2 hours late arriving at the office, parking wasn't great. I parked far away from my office building several floors up. It took me about 25 minutes to make it from the garage into my building. I had to walk very slowly. I had to stop and rest along the way. My chest was pounding. I could hardly breathe. Sweat was rolling down my back. I pressed on. There was also a small flight of stairs to conquer. I sat on the steps to think about how I was going to make it in the building and to my desk. I was thinking to myself, "This is ridiculous! What is wrong with me." It felt like I was running a marathon, but I finally made it to my desk.

Once I sat down, I had to catch my breath. I sat at my desk for a few minutes. I collected my thoughts. Out of all the effort I put forth that morning to get ready to come in to work, it abruptly dawned on me that I should have been on the way to the hospital-not to work. I picked up the phone. I called my mom. I told my mother that I was getting ready to leave Milwaukee and drive home. I couldn't believe that I was saying it. I felt like I had stepped outside of myself. I did my best not to alarm her. I didn't give much information and I certainly didn't tell my mom that I was as bad off as I was. I was calm, cool and I told her I was coming home to go to the doctor again. I didn't have a cell phone then, so I wanted her to know just when to expect me. I assured my mom as best as I could that I was well enough to drive. I hung up the phone. I had to catch my breath once again. I had to collect my thoughts again. Then, I walked slowly over to the desk of my manager. I looked him in his eyes. I said, "I am leaving. I am going home & check myself into the hospital. I am very ill and I'm pretty sure that I will not return to Milwaukee and complete this internship."

Don't ask me why I chose to drive from Milwaukee to Chicago in that condition. I had my reasons. As I reflect back with the wisdom of my full adulthood and with my "parent hat" on, that decision officially ranks among the top 3 unintelligent things I've ever done in my life. Jesus was guiding the wheel.....

Tuesday, April 23, 2013

Youth...A Blessing & A Curse

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)