Pneumonia, Adherence, and HIV


So about 2 months ago I went off of my HIV meds.  I had a lapse in insurance coverage and when my coverage was active I simply did not find the time to sit down and get on the phone to get my Stribild prescription moved over to the new specialty pharmacy.  Sadly, it takes a lot of phone calls to get started with a new insurance or pharmacy provider.  Most insurances will not let you pick up your HIV meds at your local CVS or Walgreens; the insurance companies prefer you to go through multiple layers of red tape to obtain your prescription.  I work full-time and, at the time, was in school full-time as well.  I was in school or at work from 8 AM until 8 PM Monday through Friday.  Long story short, I did not make the time to prioritize my health.

About 3 weeks ago I began to get sick.  It started as a sneeze, a sore throat, and fatigue.  I chalked it up to bad allergies or a cold and figured I was fatigued because of the heavy school/work load I was carrying, not to mention staying up late to study.  Six weeks of this grueling schedule and nights of 4-hour sleep took a heavy toll on me. 

My solution?  Keep going, push harder, do what I had to do to meet my commitments.  Well...I kept going until I couldn't go anymore. 

The fatigue was overwhelming, the sickness was worse, I was having trouble breathing.  Two weeks ago I finished my shift at work and was walking to the bus stop when my lungs began to rattle.   I sounded like I had gravel in my lungs and I was dizzy and congested so bad.  I had been throwing up for several days from the intense coughing and from drowning on all the fluid in lungs.  So, as I was walking to the bus stop to go home, I instead walked down the street and into the ER. 

They ran a bunch of tests and turns out I had pneumonia.  Pneumonia was never on my radar because I have had both sets of pneumonia vaccinations.  (Side Note...never try to diagnose yourself).  I was so dehydrated that my veins had collapsed; they had great difficulty in getting an IV into me.  I was in really bad shape.  The doctor was concerned too because I had been off my HIV meds for so long, so there was the fear that is was pneumocystis pneumonia.  Thankfully, it turned out to be the run-of-the-mill pneumonia, which was bad enough I guess.  They prescribed my an inhaler, antibiotics, and pills to stop my coughing.  I took that next day, Friday, off from work and spent the next 3 days in bed.  Ahh...but that was not the end of the hell.

I developed thrush.  It has by far been the most painful and excruciating part of all of this.  Granted, the pneumonia was bad enough; I had never been as sick before.  But the thrush was hellish.  I could not speak, could not eat, it hurt to drink.  The slightest movement of my tongue caused the worst pain I have felt since I had my wisdom teeth out years ago.  Anyway, the thrush is almost gone.  I still have a gravely voice and some pain but I am eating solid food again.  I am about to start my 2nd bottle of Nystatin. 

What is the big lesson from this?  Well, there are several.  One, I simply have to make time to get my meds.  I have had lapses in insurance before but had no ill health effects, so I did not think anything terrible would happen this time either.  But I was wrong.  I had already damaged my immune system from my hectic lifestyle, so my body was simply not equipped to deal with anything else.  Two, I know now not to diagnose myself or be flippant about being sick.  My old "oh, it's just bad allergies" lie no longer works for me.  Three, I have learned how crucial it is to remain on my HIV meds.  I have realized that the time between being off my meds to death is probably around 2 months.  I am not sure that knowledge is good for someone who sometimes thinks about dying.  That knowledge kind of gives me an easy out, should I ever go there. 

This illness has me questioning lots of things.  I have no idea how I will earn enough money for school next semester.  I have no idea how I can keep up another grueling schedule next semester.  I am not sure yet what I will do or how to resolve my fear.  It seems like my life is always a series of calamities that require me to drastically change how I do things.  I am not happy with change, so all of it is stressing me out a bit.  One day at a time I guess. 

Comments

Post a Comment

Popular posts from this blog

What Stigma Means To Me

Like an onion, there are many layers to HIV-related stigma.  Stigma can be internalized to oneself, or it can manifest outward.  Like an interstate, stigma can also move in both directions at the same time.  Consequences to stigma can impact a person, a relationship, or a community.  Like an elevator, stigma can move up and down the age scale.   The impact of stigma can have physical, emotional, and social effects to both HIV- and HIV+ men.  It seems to me there is a growing and widening divide between HIV+ and HIV- men.  Like an infection, it seems to be only getting worse.   I find myself being a part of the very stigma I detest, I have become an oxymoron and my behavior has become hypocritical of what I know to be right.   I would much rather become friends with someone with HIV than someone without it.  But...for me friendships with HIV- men too often become mentally exhausting; I get tired of the endless HIV-related...
Read more

Hello, Again!

Image
So I am starting up my blog again. I feel like it is the best way to present myself to the world authentically. Social media has become a cesspool of influencers and people who chase clout and clicks and likes and popularity. I have no wish to be involved in any of that rat race, and I have found social media to be lacking in connection or authenticity. I write for myself, mostly. I use writing as a tool to explore myself, my thoughts, my feelings, my hopes, my dissapointments. Whether or not that is "viral-worthy" or not, well, I just don't care about that. So welcome, or welcome back. Either way, this is a work in progress, as am I. Have a great day! Here are my cats:
Read more

What Domestic Violence Did To Me

There was a time when I was happy, healthy, whole, and fun-loving. Before domestic abuse, I had hope. Even during the hardest times, even while living with HIV, I believed there would always be a brighter day ahead. Fifteen years of abuse left me a shell of who I once was, and I grieve that person every day. Undoing the damage and conditioning he inflicted has been incredibly difficult. I tried to numb the pain through drug use, but that only created another problem. I am now in intensive outpatient therapy for CPTSD and addiction, and it is helping. I highly encourage IOP to anyone who can access it.   For 15 years, I minimized what was happening. The abuse was a gradual process of grooming and control. Before I realized it, I was financially trapped with someone who monitored and controlled nearly every part of my life. He followed me to work, put up cameras in the house and outside the house. After my parents died, that trap felt inescapable.  Eventually, the ab...
Read more