We Are Here, and We Are Tired: A Challenging, Amazing, Undetectable Year
I have been absent for a while. Been dealing with quite a few things. I thought I would share with you a few thoughts as we approach another World AIDS Day (without a cure).
As World AIDS Day approaches, I am daily recognizing the blessing of life, and family and friends. I am recognizing always those in this struggle who have gone on before me, those who will come after me and those in the trenches with me right now. I am especially thankful and prayerful for those of us who are long-term survivors.
It has been a difficult and challenging year for me. It has been an amazing year for me. Lots of grief, lots of stress and lots of blessings.
I am still undetectable.
Beginning in February 19, 2016, I went to the emergency room for what I thought was a sinus infection, which ended with me being hospitalized for five days. I was diagnosed with severe heart failure. In fact, I was asked, "When did you have the heart attack?" Danged if I knew! I am and have always been like the "Energizer Bunny" -- running hither and thither. My ejection fraction (how well my heart was pumping blood throughout my body) was at 15%, and they couldn't understand how I was functioning so well. They finally said that my body just "compensated." But now, once the diagnosis was in, it seemed as though my body said "enough." I was not released from the hospital until I received a "life vest": a vest worn under the clothes 24/7 with paddles on the back, a defibrillator used to deliver a shock in case I dropped to the floor.
Going home, I was placed on home care with a visiting nurse twice a week.
I was referred to UPenn Hospital, where I began a series of visits and tests. For almost three months, I wore the vest. HIV took a back burner throughout this period, even though I kept up with my meds. During this time, dialogue began about a bi-ventricular ICD (pacemaker/defibrillator) being placed inside my chest to keep me alive. I underwent my first surgery April 26. The device was implanted with one major hitch: The third lead, which was responsible for pacing the heart, was not able to slide into the bottom left chamber, and so was left undone. I only had the defibrillator working. I had to wait for a specialist to open me up again and sew in the third lead. June 3, I had the second surgery, and the specialist found an acceptable spot and sewed the lead onto my heart.
I am still healing, still recovering, still alive!
It happened so fast, I really didn't have time to process it all ... had to just do what was necessary. From February to June -- going through all the motions. I am just really internalizing how dire my situation was. I was almost dead.
And yet, my virus remained undetectable.
Just as I began really recovering and being able to climb the stairs without stopping, I was hit with pneumonia. Won't go into all the details about that, but will say this: On Thursday at my HIV visit, my lungs were clear and, by Saturday, I was in the ER, hardly able to breathe without pain. I am much better now.
And my HIV viral load is still undetectable.
I am grateful to be here, make no mistake about it. But I can't help but wonder if the longevity of my HIV status has had an effect on my heart. There are studies out there about the correlation between HIV and heart disease. HIV certainly is a risk factor in heart disease. Since HIV attacks the body's immune system, patients are vulnerable to infections that may spread to the heart and cause disease.
It's important to not only check on your numbers as far as HIV goes, but also to check your heart function, as well as other organ functions. One never knows where the HIV disease is gonna attack. It's important to stop smoking, develop healthy eating habits, exercise and get sufficient rest. It's important to self-care! For so long, many black women (whom heart disease affects the most) have had to be that "Energizer Bunny" ... we keep going, and going, and going. It's that survival mode we have had to be in all of our lives and our ancestors' lives. A while back, my HIV doctor said to me: "HIV is not gonna take you out of here; it will more than likely be heart disease."
I am, at this writing, recovering from pneumonia. Sigh ...
It really put me in touch with my husband's death. My husband died from pneumocystis pneumonia, commonly referred to as PCP. I remembered him, in denial: no meds and feeling so ashamed. I remember him getting sick in his apartment, with him shivering and coughing and refusing to call an ambulance. I had to call the ambulance for him. While it was a different type of pneumonia, I can imagine the thoughts going through his head: the fear, the rejection, the resignation of dying alone in his apartment. I was in touch with that this week. And it makes me so sad -- for him, for me, and especially for those out there who are not doing what they need to do. For those out there who have not been tested, who are living in silence and shame.
And yet ... I am undetectable.
I am also a long-term survivor with this disease.
Some congratulate, some honor our status, some boast: I'm undetectable!!!
And then there are some, like me, who are tired of writing these blurbs as another World AIDS Day approaches. But at the same time, we need to have our voices heard: "We're here!" and "We are tired!"
Now mind you, I don't want to die! A few things to accomplish yet. I also know that there are others out there who have been living much longer than I have with this disease, and I watch and hear how they struggle. There are so many others who have been on the front lines of this disease before there was anything called a World AIDS Day.
While I am grateful for my life, grateful for my survival instinct and my perseverance and/or stubbornness, I am of the opinion that so much more can be done.
Have we become complacent with the advent of so many different medications? What are they doing to our organs?
We demand a cure, and we demand that more be done for the eradication of this disease. We demand an end to the stigma propagated by lack of education. We demand safe places in houses of worship; demand that the focus be on our salvation through the redeeming death of Christ Jesus, not who our partners are. We demand full participation, not just lip service on a website. We demand medication for those in areas/countries where medication is not available. We demand in the fullness of our humanity, the fullness and inclusivity of the members of the body of Christ. We demand a place at the table.
Too many things are decided and talked about us, in some places with well-meaning people who really do not have a clue. "Nothing about us, without us" -- is what I've heard.
We are tired of platitudes and scriptures and slogans and folks who really do not understand the depth of what this disease does to our bodies and our spirits.
On this 28th World AIDS Day remembrance: I implore you to remember the very first year of World AIDS Day. Remember someone you have lost to this disease. I implore you to get tested if you have not done so. I beg of you to get medication if you need it. Check out PrEP (pre-exposure prophylaxis) -- when people at high risk for HIV take HIV medicines daily to lower their chances of getting infected. Get out there and demand more studies be done; there IS a cure out there! Make some noise! Be a buddy, be a friend to someone you know who has the virus. Be safe with yourself and your partner.
World AIDS Day 2016 is fast upon us ... what will you do? What can you do?
Things will be getting kinda hectic in this current political climate. Do something!
Oh! Did I tell you I'm undetectable? Whooo Rahhh!!!!