Dear Reader,

My name is Charli, 34, an OG Swiftie, and a total sweetheart. I’m not one to request help or a “handout,” but I’m backed into a corner and have no other means or avenues to take. Here’s my plea for help.

In mid-2021, I moved back home to Arkansas from Chicago to care for my mom. Everything was fine over the next year until late 2022. Since November 11, 2022, I have been severely unwell with what my doctors thought was the flu or COVID. Even though I showed no symptoms of respiratory issues or cough. During this time I had no strength to leave my bed for additional testing or visits, other than Telehealth. So my doctor decided to treat me for the flu based on the symptoms, but no medications were helping. It made things worse! Every day that passed I steadily began to decline in health. Both physically and mentally for several months. This also put me out of work as a freelancer for several months.

The first photo is from my last blood draw, 13 vials pictured, from earlier this month. Total of 38 vials within a week. The second photo is of my right eye. The “growth” has appeared in its full disgusting form twice now. These photos are from the recent second infection. Yes, it’s painful to touch and eventually pops, but never fully goes away. We still have no clue what it is or why it keeps appearing. No, it’s not a stye or a cyst. The remaining photos are from November when I was deathly ill. With a consistent fever of 102° (108° was the highest) lasting for 7 days straight. Absolutely NOTHING worked to break my fever or help with the immense amount of pain my stomach and body were in. My face, neck, chest, and back were covered in red patches. Followed by multiple nose bleeds. Towards day 5 I was begging and pleading for death just to end the torture my body was going through. Death felt like the only option for relief. On the eighth day, my fever finally broke, and I could slowly walk and care for myself.

Fast forward to early March 2023. I saw a hand full of local doctors including my own for a full urine and blood panel of absolutely everything. I specifically told each doctor the symptoms I had been having for 5 months and that something was seriously wrong. Each physician listened but didn’t HEAR my complaints. At this point, they implied I was spending too much time on WebMD and it was all in my head. Now, I know my body and have been healthy my entire life except for a few illnesses. Every symptom and sign was leading to an acute HIV infection. Once I called them out for their negligence and incompetence, my doctor sent me to the local hospital to have my labs done. Citing they only had one nurse on staff that day and the hospital would deliver results within 24 hours. That was a lie that led to a $1,223.63 medical bill just for a blood lab request. Which is normally $600 or so through the doctor’s office. Luckily, my health insurance covered that bill.

On March 8, I received a call about one of my diagnoses. (There are two diagnoses, both in various stages and are considered “terminal,” but manageable with aggressive treatments).

On March 17, I received another call about a second diagnosis I wasn’t expecting. The second diagnosis is stomach cancer. Hoping to start treatments soon. Those will be in Little Rock, which is another 3-hour round trip for each visit/treatment.

On March 8, I finally got the results that confirmed what I had suspected for a couple of weeks.  I was HIV-1 positive. 

Finally, I had an answer for what’s been ailing my body for so long.  However, my PCP continued to fail me by delaying clinical referrals, etc, and kept pushing a care clinic that would never answer the phone or call me back for an appointment.  So, as always, I handled things on my own and found a care management center on a Sunday.  The following morning, they called me to be seen the same day!  (Note: This clinic is a 90-minute drive one-way; a 3-hour round trip drive in an unreliable vehicle that’s prone to breaking down. Which is my only option for transportation).  They listened and heard everything I had to say and I *almost* became emotional for the first time since receiving the news.  The nurse immediately made room for me to come back the next day for clinical labs and see the doctor.  Not once did they ignore a question, or emotion, or made me feel inhuman.  I left their clinic that day with such relief and knew I was in great hands.  I have since privately started treatments which are covered through the Ryan White Program.

Since November, I’ve lost 40 lbs (continuing to lose weight daily) and have been unable to do most everyday tasks, including the ability to work. Both mentally and physically.

I’ll have 1-2 days a week where my energy is normal, then will spend the next few days in bed recovering and sleeping. I’ve become both medically and physically disabled. All within 5 months.

With no income coming in for the foreseeable future, massive increases in medical expenses, along with travel expenses to keep medical appointments (3-hour drive per trip 2-3x monthly) has been stressing me out. My family can't help with expenses since they're on a fixed income.

My health insurance will cover the basic expenses (office visits and certain medications), but won’t cover the $6500+ a month of medications I need to survive. Plus, nutritional and dietary needs - monthly SNAP benefits are not enough to keep me healthy. Especially since Arkansas is implementing major cuts to the Arkansas SNAP program.

Recently, I applied for Disability and SSI benefits, but those will not be available or approved for another 6 months to a year. Even under their compassionate circumstances.

I’ve already accepted everything and I’m solely focused on my health and recovery. Every day I fight with my body to get up and keep going because I have people depending on and counting on me to show up.  Even though many have told me to chill out and rest.  That’s just not in my nature!  I may have ADD and forget to finish a task before moving to the next, but I never quit until each task is completed.  I also never ask for help, but I'm learning to ask for help during this exhausting journey.

Thank you for your time and support!

In the lyrical words of my idols:

Taylor Swift - “soon you’ll get better because you have to.”  (Soon You'll Get Better, 2019)

P!nk - “The panic is temporary, But I'll be permanent, So when it hits, don't forget, As scary as it gets… It's just turbulence.”  (Turbulence, 2023)