The Day My AIDS Dementia Diagnosis Went Away
Deep breaths ... trying to fight back the tears ... the clouds on that rainy day in San Francisco circling all around during the Uber ride back to the airport. My favorite Aunt sat lovingly by my side. Slowly the tears began to fall down my cheeks. I managed somehow to let the moment sink in. We had just left my long-awaited appointment at the University of California San Francisco (UCSF)'s Memory and Aging Center with the team specializing in memory disorders and neurological impairments, more specifically the specialists dealing with patients living with HIV. After a nearly three-hour session that involved detailed interviews, pen and paper neuropsychological testing, complete review of 140 pages of my medical records, various brain imaging scans and a thorough physical neurological exam, I had just been handed back the keys to my life.
I need to go back to that time in 2013 when my world fell apart. Infected with HIV since 1992, I was never a model patient, though I knew better as a registered nurse. It's not something I am proud of, but it's something that needs to be shared. My virus was never fully controlled. Except for the planned pregnancy of my youngest son, there never was a period in all those years when I was compliant and adhering to my HIV medication regimen.
HIV has caused inflammation in all areas of my body. It has affected my skin, my heart, my stomach, my liver, my kidneys, my lungs and eventually, yes, my brain. I have always been what they call hypomanic. I exist in a world full of high achievers -- always with a new project to attend to, a new interest that keeps me going, a new opportunity lurking on every corner. Eventually, that process became one I couldn't control. That hypomania turned into full-blown mania. I began to suffer horribly with concentration issues. I lost focus, attention to detail; I was unable to complete even the simplest tasks. I could barely care for myself in the activities of daily living, let alone my husband of 20-plus years or our three children. I spiraled out of control, a mix of anxiety and depression, eventually becoming suicidal, resulting in a lengthy inpatient psychiatric hospitalization, bouts of neuropsych testing, loss of both fine and gross motor control and a diagnosis of AIDS Dementia Complex.
That diagnosis changed my life forever. I had my drivers' license revoked. I lost friends whom I cared deeply about because they could not tolerate my mania and inappropriate lack of boundaries, or I could not trust their insecurities and baggage. I alienated family members who found my endless sorrows draining. I isolated myself in self-pity. I descended into a world of psychotropic medication that helped fuel an addiction to prescription pain and anti-anxiety medication. I lost my way, my hobbies, my personality, my hopes, my dreams, my talents, my insight, my strengths, my goals and, most of all, the love and respect I had for myself. It was a dungeon that I could not escape.
I lived in that self-imprisonment for the better part of the last four years. However, through the grace of God, somehow I found that I was truly never alone. I was not deserted. Instead, I was entered -- unwillingly at the beginning -- into a health care and community system that truly cared. My doctors, my specialists, my mental health providers, my pharmacist, my physical therapists, my home health team, my therapist, my family, my friends who remained and my husband and children, they would not let me go deep into that abyss. They refused, simply refused, to let me give up.
· Slowly, I began to implement strategies and programs to combat my many physical and mental shortcomings and deficits. I found solace and comfort in online support groups. I learned to use and navigate Paratransit Access, the public transportation system for people with disabilities. I joined my church choir, training my brain to read music and filing my soul with purpose and celebrating a personal talent that was near to my very core. I worked hard in physical therapy through tears and shouts, triumphs and failures. I began to volunteer in the clientline division at AIDS Project Los Angeles, learning to look beyond my own issues and discover things about those affecting people with HIV that were outside my own experience: homelessness, poverty and drug addiction. I took an amazing cruise for HIV-positive individuals that once again stirred within my soul dreams of and needs for advocacy that had been lost, and I made true friendships with like-minded individuals. I joined an amazing group of women whom I jokingly referred to as "my forced socialization." These women, each battling their own demons, some with HIV, most without, became my mentors, my strength, my humor and my confidantes. I pushed through barriers in personal counseling. I opened up to my therapist and let her into my crazy life and learned through that experience that she became not just a therapist but in fact a trusted friend and a resource that I so badly needed. My home health team kept me functioning weekly, my house clean and food on my table.
I began to address each medical issue I had and the list was long -- really, really long. I almost died not once but two times in the past four years. I battled my depression head-on, first with therapy and medication and later with prolonged magnet therapy and then an amazing experience with intravenous Ketamine treatments. I found and embraced my spirituality. I began to trust my faith and celebrate it. I also began to begin a life in service to others. In all those days, I accepted the unconditional love of my children, my husband, my best friends and my dog Bailey -- now three years old and trained to be an emotional support companion. I accepted that they needed me, that my life mattered. I began to see that, as I grew stronger, their lives got exponentially better because I was able to provide what I had lost along the way: stability and effectiveness, opportunity, responsibility, humor and most of all hope.
The road along the way to that day at UCSF was filled with so many set backs and challenges it would take me volumes to list them all here. I fell down so many times. I quit smoking not once but twice. I joined the gym not once but three times. I traveled to escape my life. Somehow though, even though I loved that travel, I always came home sick from each trip and wound up hospitalized. I could never get to that point of wellness I wanted so badly; I could never truly hit my own turning point.
But that day finally came when I was finally fully accepting of my neurological challenges and truly learning to live with them. In accepting them, I had to know and learn how best to combat them, and the true answer in its purest form was simply to adhere to my HIV medication regime. So, we put my medication in bubble packs, separated by morning, noon, evening, bedtime and PRN (as needed) dosing. I asked my 17-year-old son to be my moral compass, to remind me, to hold me accountable, to challenge me to live. He did that consistently, and for only the second time in 24 years of living with this virus, I complied.
My viral load became undetectable. My T-cell count rose. My neutraphil count stabilized. My depression cleared. My skin disorders minimized. My breathing became less affected. My chest pain dissipated. My nausea subsided. I not only began to tolerate my medications, I began to accept them and welcome them as I saw them now as a means to make me whole again. They were literally saving my life. I asked to get off my three-drug regimen, envious of all the people I saw and worked with on once-a-day combinations, but when my HIV doctor, whom I adore, said, "No! You have multi-drug resistant HIV," I simply said, "OK." I took my medications that day and never looked back. I realized I had come to an acceptance and understanding that was deep within me. I was on the path to wellness. With that understanding came a freedom that I simply can't describe. It was empowering and liberating and soul-stirring all at the same time. Yet, I still had one huge remaining hurdle to overcome. No matter how hard I worked, what my team did for me, what assistance I was provided or what online games or tools I used, my memory remained affected.
I was so angry about that -- not angry with HIV, angry at myself. To me, memories are the fabric or our lives. They are the footprints on my heart. They are everything to me. You see, I am a person that likes to accomplish tasks, then move on, and when I'm done I simply file them and delete or throw away or get rid of the unnecessary parts. I count on my memories to keep everything safe and sacred. I've always been that way. With my significant long- and short-term memory issues, this strategy was not working out so well. It was downright destructive to my own sense of self-worth and to my family's future stability and growth. I needed help to understand that piece and fight to fix it or at least to prevent any further damage. Without help, I feared I could never truly be whole again. Thus, my trip to San Francisco's finest research institution was planned. I could think of no better place to begin my search for answers than at the heart and helm of this pandemic.
On Thursday, October 13, 2016, my aunt and I traveled by plane to San Francisco. She came from San Diego; I flew from LA. Just a few days prior, I had slipped and fallen in my home, fracturing my left fibula. It was a nasty fall complicated by my diagnosis of osteopenia and my severe balance, neuropathy and left-sided muscle weakness issues. Luckily, I was able to get to an orthopedic doctor who put me in a boot, allowing for partial weight bearing and a rolling walker and the trip continued as planned. We arrived in San Fran to find that the hotel room we had booked was not handicap accessible. Sigh. Was this an omen of how the trip was going to go, I wondered? Somehow, my Aunt and I knuckled down and got through the night, although getting the boot on and me safely to the bathroom with both of us half asleep proved to be an almost insurmountable task.
The next day came and we checked out, had a lovely breakfast and headed straight to our target: the Memory and Aging Center at UCSF. We called for an Uber, and a wonderful driver arrived, but it was of course grey and raining outside so just getting me into the car was tricky. Then, as we began our drive to the Center, the Prius, an electric vehicle, died on a side street, locking us inside. Minutes separated me and this long-awaited appointment; I wanted to scream and shout, but I never even looked up from my phone. My aunt expertly navigated the crisis with the Uber driver. I prayed silently that God would get me through this latest hurdle, and I'm so glad he did. The car finally started, and we made our appointment with minutes to spare. The staff was genuinely caring, professional, concerned, knowledgeable and comforting. At once, I sensed that things would be all right and that I was in capable expert hands. I felt my destiny was about to change; I just didn't know how.
The testing and assessments that day confirmed that I continue to have cognitive issues due to HIV. They confirmed that my memory is still impaired and that I particularly have issues with executive-level functioning, visual spatial items and attention issues. However, the reality is that my issues are no longer that severe! In fact, they can now be categorized as mild. I had vastly improved over the last four years. All of that hard work through those combined efforts had paid off. The doctor went on to describe a future that may even include me being able to fight to get my drivers license back. At that moment, the world shifted. My head spun around and my heart skipped a beat. It was as if life was pumped through my tired old veins.
This expert in HIV neurology went on to explain that, yes, my years of neglect and poor adherence to treatment had allowed the virus to attack and decimate my brain, but except for a few patches of spotty white matter, structurally my brain was intact. We can never go back and fix those issues. She explained that over 50% of people living with HIV have some level of cognitive impairment, that it's not something easily discussed in many communities and that some of my symptoms are atypical. She specifically addressed the memory tools I had been using: calendars, bubble packs, notebooks, recording devices, lists, phone apps and Facebook daily entries with photos, etc. She commended and validated those efforts and gave me a website to investigate some newer tools, as well. She discussed the need to decrease my cholesterol levels and treat my sleep apnea immediately. We talked about the need to continue to decrease any prescription psychotropic medicines as much as I could tolerate and incorporate 30 minutes of cardiovascular exercise five times a week as recommended by the American Heart Association. She also recommended that I continue to control my depression and raise my B12 levels. Most importantly, she reminded me to stay adherent to my HIV antiretroviral medication.
In closing, she gave me a new diagnosis: HIV associated neurocognitive disorder (HAND), status: mild (MND). She removed the old diagnosis of AIDS Dementia Complex and reaffirmed that I am not demented, saying that diagnosis was not only clinically outdated, but also personally harmful and capable of creating many stigmas and barriers, none of which I needed to continue to carry.
She freed my soul that Friday, October 14, 2016. It's a day I will never ever, ever forget. As I look to the future now, after 24 years living with HIV, I see my life full of support, encouragement, hope and opportunity. I am forever grateful for all of those who have stayed by my side and challenged me to live. I am even thankful for those who so willingly walked away. I am a better person because of all of this. I am a better mother, friend, partner and woman. Quite simply I am a better me.
Thanks for reading and following along in my journey. There will be many more new stories to share along the way, of that I am certain.
Peace, love and hope.
Until next time,