I began journaling my son, Lucius Johnson, Jr.‘s health history when he was diagnosed with HIV. Beginning in 1994, I realized that keeping health records was essential to one’s wellbeing. I searched the internet for a journal that included medical health, dental log, prescription log, family history, and notes in one book, but found none, so I just wrote on a simple ledger pad. My dental notes and family history were kept separate on another pad. The journal I have created keeps your Medical, Dental, Family Health History, Prescriptions, and Notes, all in one safe space for easy access.
Consider if you have to change doctors and insurance carriers in the middle of a life threatening illness, and your health information is not at your disposal any longer? What would you do? This happened to my son back in 1998 and my journal records of his meds and health condition was all that I had for the next doctor. Back then, their was no MYCHART, provided by the hospital, for a patient to look up his lab results.
The care and treatment he received at our local hospital here in Chicago was bar none excellent. The doctors were caring and patient with Lucius, Jr., because at times he thought he knew more than the doctors! Keep in mind the internet did not impact our lives like it does today, back then. We’re talking 1992 or earlier. Lucius, Jr. would spend hours on the computer searching for a cure and thought he could find something that would control the illness much better. The most dreaded words anyone wants to hear is “There’s no cure”. However, the doctors explained to Lucius, Jr. that there was no cure for HIV, only treatment to manage the virus. Those words resonated in my heart like a knife cutting cake so I began reading as much information as I could for HIV. The information was overwhelming at times and trying to retain it was even more challenging. My husband and I followed his illness as best we could. At the age of 33 (1999) Lucius, Jr. believed he had a handle on the situation.
Through my journaling efforts, we were able to track his progress and see which treatments were working and which were not. We were able to make informed decisions about his care and advocate for him with his healthcare team. In fact, his doctors even praised us for our thorough record keeping and noted that it made their jobs easier. We also used my journal to keep track of his symptoms and any changes in his condition, which was crucial information for his doctors.
We tried to intervene, but Lucius, Jr. told us, “Don’t worry about it; I’ve got it under control”. Well I was not taking that for an answer. For the first three years after Lucius, Jr. was diagnosed, our son did not look any different. His appearance looked average and sometimes he even recorded music for Black History Month with a singing group, called Choral Thunder in Chicago.
Things took a turn for the worse, when in 1997, five years after being diagnosed, his weight began falling off rapidly and he was also tired and had sleepless nights. My husband and I began going to his apartment during our lunch time from our jobs to make sure he had food to eat and to see if there was anything we could do for him. AIDS is a complicated illness in that it required, at the time, many medications to control or possibly keep the illness from spreading and killing more white blood cells. Our son decided in 1998, that he was going to start using herbs and shark pills, and to stop taking his medications because he read on the internet it was a more holistic approach to combat the illness. How wrong he was!
You see our son Lucius, Jr. was tired of being sick, plagued with diarrhea every day, he would sleep the day away many times and his appetite was gone. We begged him not to stop taking his prescribed meds, but he said no. In July 1999, our son’s liver began to shut down and his legs were swollen. We took pictures because we thought it was the hospital’s fault somehow. I felt we were just reaching for hope, hope that never came. We brought Lucius, Jr. home with us to live and it was a tiring time. Although only for a brief period, our house would never be the same. This is the same home he grew up in so we assumed he would be comfortable.
He was comfortable being with us, but arguments came for little or no reason. In August of 1999, our son developed dementia and could not remember much. He purchased items from his checking account and was overdrawn numerous times. One day he came home with about eight silver rings, and a very expensive gift for me. I asked him to return it and he was not pleased. He would leave out of the house underdressed and go outside to talk to the neighbors against my wishes. So small he was that I would ask him to wear a shirt and he would reply that this was the way he was, he did not care! One weekend he was with us, while my husband and I were sleeping, Lucius, Jr. went downstairs and rearranged all the items in the kitchen cabinets! Where the cans of goods once were, now housed the plates, and where the plates once were, now were cans of food! He placed baggies of food so neat and arranged them perfectly! There was some humor there, but as I said earlier it was a trying time for us all.
Also at the time of the dementia, his memory skills were amazing and he watched the Discovery Channel every day. Back then this channel was all about animals. Whatever animals were on this program on a particular day, he would repeat the information in verbatim to the Hospice Care worker! The caseworker would leave the apartment in amazement at his memory! Lucius, Jr. received Hospice care in August and his worker was great! My husband and I were trying to get him into an AIDS living facility so we started to search around. While all this is happening, my husband and I both worked and we would often leave work whenever Lucius, Jr. called. Because of the dementia, once we got back to work he would call us at work and ask why we didn’t come there..., even though we had gone and talked with him. His weight was frightfully low for his frame of 5’9”, so we wore large shirts and pants to compensate. He ate one bite of food and was full. His stomach had shrunk severely and he was not able to eat a sufficient amount of food, or else he would experience diarrhea.
I was keeping track of his prescriptions, and at one point photocopied the actual prescriptions to look them up on the internet, fifteen pills a day! My notes as I mentioned before were kept on a simple note pad. In August of 1999, my husband, Lucius, Jr. and I visited the Alexia Brothers Home for men with HIV/AIDS. Lucius, Jr., while at the Alexia Brothers home, said he was not going to stay there, he didn’t like it, which concerned me because we felt he needed professional care we could not give. He got his way, he did not stay. Several other places we visited, one in particular he liked, so he was placed on the waiting list. My husband and I would go with Lucius, Jr. to his doctor appointments and we also began researching alternative therapies and treatments to supplement his conventional medical care.
Unfortunately, on October 1, 1999, 26 days shy of his 34 birthday, our son Lucius, Jr. passed away. We received a call from the HIV/AIDS home he wanted to stay in, two days after his death, that a bed was available for him. I cried for days!
For months after he died, I read most of his hospital reports, doctors visit sheets, and prescription copies and tried to understand how an individual who was so outgoing and a personality that could light up a room without a bulb, have such a terrible disease. Some of the answers were revealed to us later on but not all of them. But I know that our dedication to health journaling helped us provide him with the best care possible and gave us peace of mind knowing that we did everything we could to help him. I continue to promote the importance of health journaling to others because I believe it is an essential tool for taking control of one's health and wellbeing.
As a testimony to his full life, 938 guests attended and signed his funeral books at St. Ailbe’s Church in Chicago on Thursday, October 7, 1999.
Thinking back now, I felt empowered when I could talk with the doctors about the medications, mood changes, dementia and weight lost. Only because of my journaling was I able to remember so much information! I was now in control!
After Lucius, Jr.’s death, I continued to keep a separate journal for my husband and myself. The journal was invaluable for the many tests, or any surgeries we may have had during the last 20 years. Thankfully we have never had to change hospitals, still with the same hospital Lucius, Jr. was born in. No one will experience the same recovery, or journey because we are all different human beings, but sharing your experiences with others lets them know they are not alone.
The one thing I do believe is: OUR HEALTH IS THE SINGLE MOST IMPORTANT ASPECT OF OUR LIVES. OUR CARS, HOMES, CLOTHING, AND OTHER ASSETS CAN BE PURCHASED AGAIN, BUT NOT OUR FAILING HEALTH.
Just think of a loved one that has passed away, and what price would you pay for their health if they could return to you?