Introduction

My name is Lily. I immigrated to the United Stated a few years ago from Cameroon. I am married and I have three daughters, 8, 6, and 3. I am working on getting a doctorate in law. It's always been my dream to get a doctorate. I used to think I would get one in medicine, but my life lead me in a different direction. I love what I am studying, I can't think of doing anything else beside law.

My life as it is, is perfect despite my daily struggle with Sickle Cell Anemia (SCA). Sickle cell anemia or Sickle Cell Disease is a blood disorder caused by sickled hemoglobin. When it is cold or too hot, the cold or any other trigger constricts the cappillaries. The constriction cause the patient to experience chronic pain and the result could be damage in the tissues and organs. It is also possible to get a SC crisis for no apparent reason. After my last crisis, my hematologist realized I could not get any more blood transfusions because each time I get one a day or two later I go into a crisis. Apparently I have a very aggressive immune system. Maybe it is good maybe it is bad. That's what God gave me. My younger sister passed away after getting a blood transfusion.

SCA primarily affects people of African descent. However, the misconception is that it does not affect people of other races, unfortunatly, people in some portion of Greece, India, Italy, the Middle East, and other part of the world are affected as well.

Most people who see me don't know, they all usually tell me "you are so beautiful" "how do you manage to keep so fit with three children." I usually smile, thank them for their "compliment" little do they know the pain that I go through every day. I never really saw myself still going to school at 34, but the lesson I have learned in my life is that it is not when you finish that matters, but how you finish. It took me quite some time to understand it and make peace with it. I still get frustrated when sometimes I can't go to class because I'm in pain. I wished I could just do the things that I want to do in life without my health interferring.

Today, I am not feeling well. I decided three weeks ago, that I do not want to spend the rest of my life fighting off pain. I called my hematologist and told her I wanted to stop taking Dilaudid for the pain I get from my crisis, the recurrent back pain, and the pain I get from my shoulders. I haven't had a fixed diagnosis of what is wrong with my back. I have had three different diagnosis from physicians, which added to my frustrations.

My back problems began with my last crisis that occured in 2006. Two hematologists told me the problem might reside in my spinal cord. One told me after hours of MRIs that I had spinal stenosis, the last one told me I had a few bulging discs that might be the cause of my pain. The problem in my shoulders were fairly easy to diagnose. One look at my X-ray films and anyone could tell that my bones in those areas have taken a serious beating.

Because I have a very high tolerance for pain, I thought I would just ignore my back and shoulder pain. But the problem is that while I am trying to get off Dilaudid I sometimes get these minor crisis and I just sit around with pain not wanting to give in to my discomfort. But then when I fear it might escalate into something more more serious, I have to take my medicine and drink plenty of fluids.

Over the years, I have learned to read my body like a book. Sometimes when I get these minor crisis, my husband asks me whether we should go to the ER. I usually tell him "it does not seem like it going to be a big one." I just take care of myself then. I have only been wrong once. That was before my last crisis in 2006, the pain had been lingering for hours. I sat around with it thinking it would just go away, until my husband came home and saw me looking very uncomfortable. By the time we got to the hospital I could not even walk anymore. For, pain had taken hold of my whole body. As I screamed and twisted with pain, I could not help wondering why I did not take any medicine while I could still control the pain.

God Bless. See you tomorrow.