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.
Oh those pills! I hate how they remind you everyday that there is something wrong with your body. On the other hand, they do help you survive. I completely understand your love/hate relationship. I'm often tempted to skip a dose, just so I can feel 'normal' and without disease. But I continue to take my pills simply for my son. He keeps me motivated. Stay strong!
Hi Maria just saying hi. Bob
I hate taking medication. I grew up not taking it - my mum being a firm believer in dealing will illnesses the natural way i.e. herbs etc. I've always found it difficult to take meds ever since. I struggled my first few months of taking them - it got so bad I had to have them intravenously - then my sister asked me why am I letting HIV rule my life. I learned to deal with it with protestations :) I have been diagnosed 17 months now and had to go on medication right from the beginning. I now take 3 pills all at the same time- 6.55 am every morning - my alarm lets me know. This is the only time that I am reminded that I have HIV. Apart from 6.55 am every morning I put it to the back of my mind and get on with my life. I rule HIV it does not rule me.
Taking your medication with positive thoughts increases their ability to work, if you can try turn your thoughts of 'there's something wrong/they are toxic, unnatural' into 'I have a pill that will make me well' and begin to embrace the idea that the tablets are strengthening and a daily recognition that you have the ability to suppress the virus, this will help create an 'attitude of gratitude'
I know this is easy to write and difficult to process, but it is such a common problem and adherence is so important, please feel welcome to join the attached free event in October which will be addressing these issues; . https://www.facebook.com/events/590471170985336/