Donna Lawson is a neighbor and former school principal receiving medically tailored groceries and nutrition therapy thanks to caring community members like you. She courageously shared the story of her HIV diagnosis publicly for the first time at a recent Food & Friends event, and you can now read her true story. Donna is an accomplished educator, a loving grandmother, and aspiring author. We are honored to amplify her voice.
Good Evening, My name is Donna Lawson. I believe, Food & Friends, is the providential way of care and love in providing fresh food for health benefits.
I am a mother of two adult women and three grandchildren. My older daughter is a lawyer who works within the school system in closing the School to Prison Pipeline, a disturbing national trend wherein youth are funneled out of public schools and into the juvenile and criminal legal systems. My younger daughter is a performing arts dancer and currently one of the choreographers of Dance Sanctuaries at the Kennedy Center, Washington D.C. The three grandchildren, one boy and two girls, are lovable and indescribable human beings. “Go figure,” says the children I once worked with here in Washington, DC.
I began teaching in 1984 as a Special Education Teacher for 14 years, and went on to Special Education Director, Director of Instruction, Director of Residential Services, Dean of Students and Director of School Culture. The combination of poor prognosis, uncertainty of disease course and severe symptom burden heavily impacted me during my last position of leadership as Senior Director of Columbia Baptist Church Child Development Center. The physical symptoms I was experiencing were as they say “The straw that broke the camel’s back.” I had trouble breathing, shortness of breath, feeling like I was not getting enough air, a cough that wouldn’t go away, coughing up mucus, popping and bleeding mouth ulcers, discomfort and pain from the mouth sores as well as inflammation. This final summation was the result of 10 years, a whole decade, and 3,650 days of symptoms and signs that something was wrong with me.
In 1999, I found myself with very painful mouth sores, “roller coaster” weight changes (losing weight when I was not dieting and gaining weight when I was not splurging), feeling overtired, with low energy and a strong desire to sleep that interfered with my normal daily activity; working: raising my daughters and most of all brain fog (the struggle with memory loss and sometimes trouble concentrating). Of course, forgetting to hand out the worksheet for homework that I had written earlier on the chalkboard was no doubt the delight of all my students. The students must have worked in “cahoots;” forming an alliance or partnership to not alert me that I had not handed out the homework worksheet. Imagine that? The brain fog was no laughing matter when I struggled to remember my assignments or tasks for the Head of School’s leadership meeting. My forgetfulness was becoming blatantly obvious. Physical health problems were causing me to become depressed and anxious.
My favorite quote from my family doctor when I began this journey was, “It can’t really be that bad if you are still working, and doing everything you do.” I told him, “I didn’t know I had a choice.”
I was not a hypochondriac. I was not anxious about my health for nothing. Consequently, years 1999 to year 2006, I visited with multiple physicians; Primary Care, Ophthalmology, Obstetrics and Gynecology, Gynecologic Oncology, Cardiology, Pulmonology, Rheumatology, Dental and Oral Surgeon, Infectious Disease Specialist, Ear, Nose and Throat Specialist, and Psychiatry Specialist. Throughout this time, as some symptoms worsened I continued, doctors, like a broken record, said over and over again, “I do not know what is wrong with you, but, I am prescribing this medication.” Enough was enough!
If the doctors did not know what was wrong with me, I was not going to take any medication for an unidentifiable illness. So, for pain, I took Tylenol and for mouth sores, I gargled with salt water and mouthwash.
Ensure nutritional drinks were my only meal for the day. Long story short, I was no good for anything beyond work once I reached home.
I could no longer hide from my family or my employer how ill I felt. I could no longer pretend to be doing better than I was until I could no longer work, care for my family or even pursue my dreams no matter how hard I tried.
Between 2007 and 2008, I visited the hospital emergency room frequently. Finally, in 2008, I was diagnosed with Lupus. I went to see the doctor for my annual gynecological exam in 2011. The results of my lab work indicated that I was HIV positive. I was diagnosed alongside Lupus with HIV (Human Immunodeficiency Virus) a virus that attacks the body’s immune system.
The diagnosis of a human immunodeficiency virus (HIV) infection in the setting of a connective tissue disorder like Lupus and vice versa have been vexing issues according to health organizations such as the Center for Disease Control and the National Health Institute. It is well documented that HIV infection can mimic the presentation of autoimmune disorders, although there have been various conflicting reports on how exactly HIV infection affects the course and prognosis of diseases. The association between autoimmune diseases and retroviral infections has been studied extensively. It is well documented now that the presentation of HIV infection can mimic that of autoimmune phenomena.
The elephant most often in the room is the question “how did you get it?” I think what the person really wants to know, especially if they are friends of yours, is “who did you get it from?” Honestly, I thought, I contracted HIV from my second ex-spouse whose behavior was linked to illicit drugs and risky sexual intercourse with women who used drugs as well. Truth is, I do not know “who.” And after living HIV positive almost 12 years now, the one to accept responsibility for my HIV positive diagnosis is I. I tell my story because I am no longer bound by blame, guilt and stigma. Seeing so many doctors, nurses, lab tech, etc. I am asked to verify my medical diagnoses all the time. Even if I didn’t say out loud “I am HIV positive”, the computer program “EPIC” provides easy access of my medical history to the medical providers caring for me at the time. The way I see it, if I can affirm out loud to my many doctors and office nurses who often change each visit, I can say out loud when need be, “I am HIV positive.”
Almost everyone who takes HIV medicine as prescribed can reach an undetectable viral load, which I did within one to six months after starting treatment. But treatment is not a cure. HIV is still in my body, although my viral load is suppressed, even when it is undetectable. With HIV, I am at risk for a number of pulmonary infections as well as pulmonary disease. Consequently, year 2019, I underwent a lung biopsy. The months following, I received my prognosis; Idiopathic Pulmonary Fibrosis: An Autoimmune Interstitial Lung Disease associated with HIV and Sjogren’s Disease; the chronic and incurable disease is the scarring of my lung tissue that continues to worsen and spread over time damaging my lung structure and making it more difficult for my lungs to work properly.
My Pulmonologist explained to me that all of the symptoms I had been experiencing with the final diagnosis “Idiopathic Pulmonary Fibrosis” can be explained on the basis of an underlying HIV infection.
So, what do you get with disease? More medication. The most common side effects associated with OFEV include diarrhea, nausea, stomach pain, vomiting, liver problems, decreased appetite, headache, weight loss, and high blood pressure. I experience 6 of 9 of the most common side effects on a daily basis. When you have diarrhea, nausea, stomach pain, decreased appetite, weight loss, and high blood pressure, it is even more important that I eat sufficient fruits and vegetables, oatmeal, pasta and several meals a day.
Now that Food & Friends is a part of my life, food has become part of my healing.
You see, SNAP; food stamps, given out in a lump sum at the start of each month, run out for me as with many families before they reach the end of the month. The burden coupled with the anxiety I often felt in not having enough food, more specifically, the foods needed in managing the side effects of my medication, have lifted my food insecurity and my emotional wellbeing.
My medication OFEV Clinical Educator says, “OFEV the medication you take to treat your lung disease is food absorbent and needs a bed of food to lie.” Sure enough, Donors of Food & Friends provide the blanket. Thank you! Most importantly, Jenn Krasilovsky, my Food & Friends Registered Dietitian Nutritionist, helps me manage the side effects of my medication by identifying my type of diet and how often I must eat, despite my lack of appetite and gastrological challenges. Make no mistake; there is no cure for IPF associated with HIV. Yet, the services offered by Food & Friends; groceries-to-go, nutritional counseling and nutrition tips are a state of my healing; my complete physical, mental, spiritual and social wellbeing; and not merely the absence of disease. Through Donors of Food & Friends, my symptoms and quality of life is improving. Today, I live, IPF/HIV healthy.
I am a witness, Food & Friends, makes good on their promise “Delivering hope, one meal at a time.” Thank you Donors! Thank you Stan, my Delivery Driver! Thank you Food & Friends!