Liz Santos
“I cannot walk much without suffering for it after. Talking is exhausting. Doing the dishes. Washing my hair. These are not carefully spaced out. “5 dishes now, 5 later”...”I could wash half my hair and sit down in the shower until I’m ready for the other half”. Being at rest is the worst because then I can feel it all.”
Will tonight be the last night?
Am I gonna die?
Is tonight going to be the night?
And would my death count since I am no longer positive with COVID?
Would it count?
I am no stranger to pain. In 2017, after 4 MRIs, X-rays, and tons of blood tests, it was concluded that I have fibromyalgia. While it took years, I have overcome living with chronic pain and have my disability under control.
But COVID-19? Every day is unknown. Between there not being enough research for long-haulers to there being limited COVID recovery support in Louisiana, I am exhausted and downright terrified. And I am not ashamed of it.
Back at the end of March, right when the country was shutting down, I caught COVID. I had the usual symptoms: fever, cough, body aches, loss of taste and smell. Towards the end of it, I started to experience chest pains. This was at the time when if you had chest pains, you did not play around and went to the emergency room or urgent care for fear of pneumonia.
After an X-ray and EKG, I was cleared of pneumonia and sent home with a diagnosis of costochondritis. If only I knew what would literally drag down my body the upcoming months.
Post COVID, I had a small surgery in my lower back to ease some tailbone pain. To have the surgery, I needed to have two negative COVID tests. My test came back positive. Positive. Seven weeks after my initial test and symptoms.
By then I thought I was officially done with COVID. Positive test aside, I didn’t have any symptoms (or at least that is what I thought at the time).
So I returned to my normal programming (post negative test of course). When New Orleans started to open up, I went to PT and started to work out at the gym (mask a given - as it should be).
Every now and then I experienced chest pain. Like so many around me, I dismissed it as being the way I was lifting weights or stress.
Around this time my journey with meditation was feeling incredible. Until it didn’t. Until breathing deeply hurt.
And then it all hit me.
My general doctor suggested heat, ice and ibuprofen. No relief.
Referred to a cardiologist, my EKG, ECHO and 2 day monitor came back clear. Prescription aside, no relief.
Referred to pulmonologist. Breathing test was clear and the doctor insists it is acid. Three prescriptions, worsening symptoms.
Emergency room. After emergency room. 10pm. 1am. 3am. 5am. $500 co-pay each time. Thinking I was having heart attacks. Struggling to breathe. My body feeling numb to the point that I can’t feel myself pinching my arm. And what was I met with? It must be stress. In my head. I’m much too young. I should see a therapist. It must be acid reflux.
NOTE: My visits at times were downright crushing. A doctor that had once seen me before entered the room while I struggled to keep my eyes open and shouted “Well you’re back!” Everyone could hear. This is the same doctor who said the visit before “Well, what do you think this is?” Last ER visit test show lung “scarring” but pulmonary finds it insignificant.
I’m at the point where I am hardly sleeping or moving. I can knock out emails but space out calls so I can breathe. And pulmonary is unresponsive to my messages.
So I find a new pulmonologist. He suggests medications. 2 months post visit, no relief. Perhaps my Fibro is elongating my recovery. But he can’t be sure.
Pulmonary refers me back to cardiology. Test are inconclusive. Prescription prescribed. I hope for relief but at this point, I don’t expect any.
My pain is real. So many folks have thought it was stress. Acid reflux. In my god damn head.
But I am a 30 year old with no pre-existing conditions.
I cannot walk much without suffering with it after. Talking is exhausting. Doing the dishes. Washing my hair. These are not carefully spaced out. “5 dishes now, 5 later”...”I could wash half my hair and sit down in the shower until I’m ready for the other half”. Being at rest is the worst because then I can feel it all.
So why the question - will I die? Will tonight be THE night? Because it’s real. It’s that real. So I prepare. Life insurance. Additional policies. Preparations. Do I want to die?
Of course not.
Is there any guarantee that the doctors have done all they could? That I have received top notch care? Or that no matter what they do, it won’t matter?
I know death is a harsh word. This post will be met with a lot of second guessing. And belittling of my situation.
This is not intended as a diary.
This is to outline a Covid recovery turned long hauler. This is to show that with all my resources I am blessed to have (insurance, money), I am still lost.
A trainer who spent a good portion of her days running and training said something like “after having Covid, I advocated for myself. And it didn’t matter. Tests were inconclusive so I prepared myself to go home to die”.
I know that I am not the only one.
This is real.
30 year old woman. Sister. Daughter. Wife. Cat lover. Someone who wants to live.