One Pill at a Time
Since my last A Girl Like Me blog entry I have earned a Master’s degree, traveled to California, South Carolina and Kenya and made the decision to settle in the Second City (Chicago) for a second round. My trip to California was prompted by the invitation of a professor to participate in a conference presentation with several colleagues. My time in South Carolina was spent reuniting with and loving on family and friends that I hadn’t seen in several months and mentally preparing myself for my journey back to Kenya. In Kenya I spent seven weeks with a dynamic group of women who taught me much more about life and myself than I could have ever taught them. As an intern at Living Positive Kenya, an NGO that seeks to improve the physical, psychological, and economic health of women infected and affected by HIV/AIDS, I had the privilege of facilitating their weekly support group and creating a fund raising project that is soon to be revealed.
I returned to the States focused and ready to change and affect lives and walk in my purpose, but instead of being greeted by welcoming opportunities I’ve been confronted by drastic extreme adversity. It almost seemed as like every aspect of my life has been turned upside down. In addition to a few financial challenges, I have discovered that my HIV levels are no longer undetectable and that my CD4 count is decreasing rather rapidly. My HIV levels have been stable for at least six years which makes this news hard pill to swallow (pun intended). The honest truth is I haven’t been taking my medication as prescribed for quite some time. Adhering to medication has been one of the few challenges that I continue to struggle with in my quest to “live positively”. From the time I was diagnosed in 2002 I’ve held a startling image of my mother before and after starting meds and the comparison is quite dramatic. My mother’s doctor prescribed the only AIDS drug available 1995, AZT. The medication was immediately snatched from pharmacy shelves the moment pharmaceutical companies and the FDA discovered that the toxic drug did more harm than good in AIDS patients. It seemed as though my mother didn’t develop sores all over her body, lose weight, experience muscle deterioration or lose mental capacity until she started taking medication. This image of the rapid decline of my mother’s health has created an intense love\hate relationship with HIV/AIDS meds that I have yet to be sort out.
I was diagnosed with AIDS in 2002 and didn’t begin treatment until a year and a half later. And I only began taking meds then because I was issued an ultimatum, take the medicine or die. At the time my CD4 count was 5 and viral load 150,000. The first regimen I was prescribed made me so sick that I couldn’t leave my home. Weeks later, my doctor and I candidly discussed my options and I was prescribed two more regimens before we identified a kinder and gentler cocktail. I was so thankful to finally have a regimen that worked well and didn’t cause strange rashes, headaches, diarrhea, stomach cramps or nausea. After some time, I purposely skipped doses after a co-worker and medical professional who wasn’t aware of my status, explained that HIV/AIDS meds cause inevitable, irreversible liver damage. Hearing that bit of information freaked me out so much that I cut my dosages in half. Strangely enough my lab reports continued to show steady progress so my doctor had no reason to believe that wasn’t adhering to the prescription. Her assumption was quite inaccurate.
Seeing this change in my numbers now after being undetected for such a long time reminds me that I am a woman living with AIDS. I can no longer overlook this aspect of my life and have been forced to admit that my relationship with my medication is steeped in fear, fear of the past and fear of the unknown. Taking four pills twice a day constantly reminds me that there is an unwanted, uninvited malady flowing through my veins that is not going anywhere any time soon. I’m now reminded that more importantly than being an aspiring author, HIV/AIDS advocate and inspirational speaker I am a human being who has just as many weaknesses and frailties as the readers of my writings, the listeners of my thoughts and experiences when I speak publicly and the participants of the workshops and seminars I facilitate. I’m sure I’ll conquer this challenge someday, my life depends on it. But until then I’ll just take it one pill at a time.