The First Steps of My Journey

This blog is an effort to offer hope and strength to those who are battling autoimmune disorders. I want to share with you what I've learned: how to communicate effectively with doctors, advances in research, asking for support from family and friends, ways to keep your chin up while looking for the bright side, and ways to take some control back of your body and manage your disease. These first few entries may be a little tedious but I want you to know about my journey, my pitfalls and failures and my triumphs. I do this so that my journey might be a road map for yours and you'll know that you're not alone! I call my journey the "path of least regret" because my disease forces me to make choices. What would I regret more, (1) going out in public and risking getting sick because my immune system is shot or (2) seeing my son play his first game of football? For me the choice was easy. I needed to see my son play ball... thus, the path of least regret.

In late September of 2003, I checked into our local hospital for some minor, out-patient surgery. The surgery turned out to be a little more complicated and I awoke in a private hospital room, running a fever and in tremendous pain. My first name really should be Murphy, as in Murphy's Law, because anything that can go wrong often does go wrong to some extent and 2003 was my worst year! In fact, the surgery was the last of a very long list of calamities. I mention this only because I firmly believe that a person's emotional health, such as unending and overwhelming stress, plays havoc on a person's physical well-being. In 2003 alone, I lost a baby, changed jobs, which turned out to be a terrible mistake, nursed my husband through serious neck surgery, cared for my son, who broke his arm twice in three month's time, suffered through several rounds of strep throat and pink eye, and had a shattered tooth, which was infected and resulted in a dry socket. So, 2003, wasn't my best year and I was hardly healthy going into my surgery. It was only while I was recuperating at home that I began to realize that I wasn't healing and something was terribly wrong. I kept my regular doctor's appointments that were meant as follow-ups to the surgery and mentioned that my fever, while not raging, was constantly higher than normal (around 100 degrees) and I felt achy and tired, almost like I had the flu. Each time, my doctor ordered blood work and scheduled another appointment for the following week. That was the beginning of a 4-year odyssey of tests, fears, doctors, confusion, and loneliness in search of a seemingly evasive diagnosis. My purpose for this site is to be a beacon of light to those still searching for an autoimmune diagnosis and share what I've learned while waiting for my body to reveal its secrets.

By November of 2003, I was still running a fever and fatigued. Something new was happening also. My joints were beginning to throb and turn red with heat. I was nauseated and my stomach hurt all the time. None of these symptoms could be explained in one easy diagnosis. I felt disjointed and a little bit crazy. I thought maybe the stomach issues were a result of the antibiotics and pain medicine I had been taking since my surgery. I mentioned earlier that my doctor was running blood work on a weekly basis. My white counts were all over the board. One day they would be at 14,000 and a week later they would be at 2000. My red counts began to drop at an alarming speed and I soon found myself taking large doses of iron pills to treat anemia (further adding to my stomach woes!). My doctor told me that he was going to refer me out to another doctor who might better treat my F.U.O., which I later learned was "fever of unknown origin". He said it just like that, "... another doctor who can better treat you F.U.O." He said his nurse would call once the referred appointment was set. She called and gave me the name of the doctor, his phone number, the referral number and the doctor's office address. It was several hours later when I realized that I had failed to make sure that the new doctor accepted my insurance. I called the doctor's office and was greeted by a very friendly receptionist, who informed me that they did not accept my insurance. She cheerfully announced that the only doctors who accepted my insurance were located at the Montgomery Cancer Center. Confused, I asked her to confirm my name and my appointment, which she did. I asked why I had been referred to a cancer doctor, an oncologist. She said, "Well, Darling, you have leukemia."

With those words, time stopped. That moment was burned into my memory and my senses seemed overly sensitive. I watched the too-bright sunlight that slanted through the shutters of my widow. Vaguely, I could hear the receptionist talking the background of the roar of my pulse in my ears. In a knee-jerk reaction, I had viciously twisted the telephone cord around my hand and my fingers tingled. Stupidly, I said, "I have an eight-year-old son. I can't have leukemia." Then very gently, for fearing of my body flying apart in shock and fear, I returned the telephone to its cradle without even saying goodbye. I curled up into a ball and cried. I begged, I pleaded, I made every deal I could think of with God. My prayer was, "Please don't let this be cancer. Let me watch Tom, my son, grow up. Please let me grow old with my husband. And if it has to be cancer, please let me survive it." I prayed that prayer over and over during the 2 long weeks leading up to my first appointment at the cancer center. With that, I'll say goodbye for now. The next entry will be my second step in my terrifying journey: The Montgomery Cancer Center.