You wake up one morning coughing like your lungs want to expel themselves from your body. You can’t breathe and basically you are hoping that somebody just tears out your lungs to stop it. That is how a Friday morning started in early March. Immediately I  called my doctor and they had me come in as quickly as possible.

 I honestly thought it was a cold or bronchitis.  Sadly an all to familiar Lupus battle.  I would need a refill on an emergency inhaler, an increase on the dose of my preventative steroid inhaler, and be prepared to drink a ton of my beloved lemon ginger tea that is my normal go-to for cough.  Little did I know that this was to become a 9-week journey  as I had to fight a system not prepared to test patients that had symptoms. But also didn’t meet the ridiculous criteria of having not traveled to Wuhan China or Italy made it impossible for my doctor’s office to test.

At least I had an incredible Nurse Practitioner that aggressively treated my symptoms as best as she could.  Using inhalers, nebulizers, a round of antibiotics, and cough suppressants.   I lost my sense of taste and smell, had a constant sore throat and headache. As well as body aches above what a Lupie normally has.  There was also the grinding fatigue that just wore me down.  My poor puppy would sleep next to me and every few minutes as I woke barking coughing she patiently waited to put her head back on my chest.  I had no appetite, knowing I needed to eat something I lived on ramen noodles (please don’t judge me 🙂 ) and copious amounts of hot water poured over sliced lemon with water and then a ginger tea added to steep.   

There is no respite from COVID-19, but here is my experience as someone with Lupus.  March 13th is when it began; the journey I would not wish on anyone.  Yes, I am immunocompromised.  I am one of those that are talked about.  The one that can stay home, not go out.  Just live inside.

 I had been living at home, I went out once to go to the pharmacy and pick up a prescription.  Every precaution that was recommended at the time I had taken, and I was wearing a mask before it was recommended.  We Lupies know that during flu season the extra precautions we must take.  

I used nebulizers, and tried to handle the symptoms.  Contrary to knowing in my mind and heart I probably had COVID-19, I also was struggling with the fact that it should only last a couple of weeks.  I did not have a diagnosis, my doctor’s office was working with me furiously trying to help with symptoms, but there was no relief.

Then in April, I woke up one day with a sore throat that rivaled the good old days of strep throat and tonsillitis.  I called my doctor’s office, described the symptoms hoping for an antibiotic.  The receptionist immediately told me to call a different phone number.  She said I had to be tested for COVID-19.  I honestly laughed.  I didn’t have it.  Really?  Are you kidding me?  After weeks of fighting symptoms and hoping that quite frankly my body would just give out or I would magically get better.

My state had changed the standards I had to get tested.  It was laughable to me.  There we so many that needed testing that I knew had not been tested.  I called the number and was shocked at how quickly a series of calls went and within 20 minutes I had instructions of where to go to get a test.  I had thirty minutes to get there, so I masked up and hurried to the testing site.  It was efficient and quick, I was impressed.  However, and this is the catcher I STILL thought I did not have it.  Everything said it could not last for more than 14 to 21 days, or so I thought.  I went to the doctor initially on March 13th, and I was being sent for a COVID-19 test on April 13th; how could this be?  Needless to say, I was SHOCKED when the next morning I was called and told I tested positive.  POSITIVE?  Are you kidding me?  

The nurse that I spoke with was incredibly nice and helpful.  I asked her a series of questions.  I will let you in on a secret, for me the more I talked the more I sounded like a wheezing barking dog.  In fact, I think someone could have called the police on a noise complaint about me.  I was asking how this could be, I had symptoms for over a month and the more we talked the more confused she got as well as myself.  She kindly told me that the Health Department would be calling me to do contact tracing and go over some of the safety measures again.  However, it was essential that I isolate myself from anyone in my home (I live with others, so I went into bedroom isolation) and it would be 14 days and I would retest.

Two days later, I received a call from  a nurse from my hospital system.  They were checking for symptoms and how I was progressing.  Apparently there is a scoring chart; well I was scoring too high so this earned me a call every day.  This is one of those times you want to be like a golf player; the lower the score the better.  I was not one of those.  It was three weeks of calls before I was allowed to be retested.  I have to be honest, I have never been so nervous.  This includes the final capstone project that decided whether or not I would graduate with my MBA.  The first test came back negative.  Woohoo.  You have to wait 48 hours then test again.  I got my second test, and it also came back negative.   I was technically COVID-19 free.

COVID-19 left its mark.  I used my nebulizer and inhaler still on  a daily basis for 2 weeks after being Covid-19 free. I still use my rescue inhaler more than I am comfortable with.  A month after testing negative, I still cannot walk up stairs or lift things, and God forbid I develop a sore throat for a few days.  There is a nervousness that it is back even though I know that once you have had it you are not supposed to get it again.

 There is a strange mark that it leaves on you.  I walk every day no matter the pain it causes to build up my lungs because I know that I must have strong lungs; who knows what damage it has done.  Shortness of breath and coughing up a lung are almost common now, and you want it to stop.  COVID-19 left behind some “friends” that I hope leave with time, it has also left some fears.  I stop and remind myself that these fears hold no place, but I am hyper vigilant in knowing the research and latest statistics and data.  You see, for me COVID-19 left more than just a few physical issues to deal with; it left a few fears that nine weeks of my life will disappear again.  But then I am reminded that I am not one of the 110,000 dead and that I am fortunate.

With Love,

Amy