“‘What time is it?! Am I late to work? Sh*t!’ I hadn’t even opened my eyes yet, and I was already freaking out because something tells me I was off to a late start. I can feel the sun shining through the window onto my side of the bed. If I were to be waking up on time, it’d still be dark out; the sun doesn’t rise til I am walking in to the office. Lucky for me, work is literally across the street. I rolled over and managed to grab my phone, you know, squinting my eyes, trying to open one eye to see the time displayed on my phone, 6:37 a.m. I was not late, yet.
I got to the parking garage, and I felt it, there it is again, that weird ‘lagging’ sensation I had gotten the last few days sporadically. It numbed me.. Made me feel…. ‘off’. I ignored it and run in to clock in, I couldn’t shake it this time though. I headed to the bathroom and before I even type to code into the door, I started shaking, losing sight of the door itself. I managed to find the knob and get inside.
Little did I know a co-worker of mine was in there and she definitely saw what I can only picture was freaky twitching and my head moving all crazy. It felt like I was nodding my head sideways 100 times without being able to stop myself, and my hand… ugh my hand is the worst. You know those weird freaky zombie movies where their body parts move in all sorts of weird ways and their hands are like inside out? That was my hand, except I could feel it cramp up my entire arm from the way it locked up on me. CRAZY feeling, and painful.
‘You are not OK, do you need medical help? What can I do?’ she asked. ‘Nothing,’ I said while catching my breath and snapping out of whatever that was. Longest 15 seconds of my life. I ended up going to my supervisor and letting her know what was happening and naturally, it was advised for my safety and well being that I seek medical attention and take a leave until we figured out what was going on. I exited work that day, not knowing I was about to embark in the toughest 5 months of my life because of this.
Day 1 of this for me. Short term disability leave started for me right before they announced something about a virus that was out in China and is killing a lot of people. Fear hit me out of nowhere, and I started to panic. Then again, the world is so much worse out there, I should just be grateful I’m still breathing.
Then, on February 24, 2020, the symptoms started to get worse, so I began to add notes in my iPhone notepad to keep track of when these episodes hit me. ‘I woke up today and could not find the right words, my speech is changing. I’m scared and frustrated. I slurred my words like a drunk person does, maybe even worse because I can’t even understand myself. I couldn’t focus. I couldn’t sleep. What does this all mean?! I’m bleeding. I see blood on me, but from where?! It’s about 2:15 a.m. now, and I am in the bathroom crying.’
I don’t tell anyone because, if you know me, you know I hate involving others in my stuff. Besides, covid had been a tough adjustment to get used to, sudden changes and risks out there had us all worried. The last thing I wanted was for babe to feel more pressure since he was the only one working full time right now, and having to go into hospitals and his office building for work, the risk of exposure was higher for him and us. Not only was I already on bed rest and stuck home before this, but now it looked like the whole world was confined to stay inside. I was scared. It’s one thing to be ill or sick and not go outside because you don’t have the energy, it’s another thing to be at risk of infection or dying because a deadly virus is out there. How is this the world we live in now? How did this happen? I wouldn’t even watch the news as much anymore because there are so many different stories.
On March 12, 2020, I went to see this specialist who believed there was narrowing of an artery in my head causing lack of blood flow that could be causing these episodes. She took more blood samples for testing. Now, we waited. She talked to me about treatment options if this was something worse… she paused and said, ‘It could be possible you have a developing case of Lupus.’ My heart sank.
Of course, now she had me freaking out because she told me the reason I was referred to her by my neuro was because I tested positive for high ANA levels, which means I could have Lupus. Another thing to panic about. I sat in my car outside of the building and cried, hard. This was too much. WAY too much to deal with. I thought about a lot of things. How can this be? Nobody in my family has had these types of illnesses. WHY ME?!
I called my peewee. He has this way of calming me down even when things are at the worst of the worst. But he said the obvious, there had to be something missing. Something we were overlooking. Perhaps a second opinion? Options? He tells me to please just take time to process, we won’t win anything by going crazy right now, and that he will see me soon at home to discuss. No more driving for me in this condition. My ear bled with discharge; my nose bled.
Covid had us shut down entirely still — a quick break from medical to discuss the emotional breakdown here. I cried again. I don’t like crying in the open. I don’t like being seen. I don’t like hurting out loud. But apparently my love also broke down in the bathroom by himself for the same reason. To not be seen. What was this doing to us?
I kept asking myself why this was happening and I couldn’t find an answer that fits. Rent would fall on his shoulders alone. He had to pay ALL the bills. I know he’s never done this before, and it was heavy for him because he is now covering 4 people under his wing. I understood his reasons to feel stressed. Scared. Angry. Upset. Overwhelmed. I only got 40% of my short term check because it turns out I was a week shy of my 1 year mark, and that means I couldn’t get my full disability checks. $700 came in, and I literally handed it over to him. I felt awful. I was now a burden. Not a partner. Not contributing in the time of need the way I should be. This broke me down more. This hurt me so much more.
On, April 5, 2020, Babe got sick. Babe was throwing up and had a fever. I prayed, ‘Jesus, please don’t let this be what we think it is. Lord, please don’t be cruel with us, not him.’ I kept my composure and tried my best to tend to him, I didn’t care if I was exposed to it because of him. At that moment, all I could think was, ‘You need to take action now!’ I don’t know how, but I got this crazy boost of energy despite my own symptoms kicking in, and all I kept thinking was, ‘This man is the light of his parent’s eyes. He’s MY light.’
So, against all recommendations, I pulled myself together and I left the house to get ginger ale and crackers and medicine…. and again, the tears came. I cannot fight back tears when it comes to him. It’s my biggest fear to lose him to this. I refused to let that happen. I sat in the car, and I took a moment to allow myself to feel what was pouring out of my broken heart, but I knew deep down I had to wipe my tears and get home to him to feed him and make sure he’s taken care of. His fever spiked. By nightfall, his temp was up to 100.3, 101.8, 100.9. It’s a waiting game, he said. His stomach was all over the place, nausea, aches, chills.
On, April 6, 2020, his job referred him to a respiratory illness center for covid testing the next day. We went to get him tested the next day and prayed this was not the virus. A week later, the results are in. NEGATIVE. A sense of relief. Our prayers were heard.
April 10th, my head felt like it was going to pop. I shook and immediately started crying from the sharp pains I felt today. Peewee witnessed the whole thing and sees me grab my head. I felt like if I did not hold my head in place, under pressure, it would have popped. I just couldn’t take the sharp tension pain that surrounded my whole head and shoots down my arm. My hand cramped up, and I couldn’t even open it on my own anymore, he had to hold me and help me.
He took my hand in his and slowly but forcefully started to open my cramped hand back up and massaged it to start getting circulation going. I couldn’t help but cry, telling him how unfair this all is and how scared I am of this condition. All he could do was console me in his arms. There were no answers now. Testing was inconclusive. Testing led to more questions and had the doctors perplexed. Some results were normal, yet the symptoms don’t add up to anything they could diagnose 100%. A lot of questions.
Happy Quarantined Birthday to me. I was struggling with my mental health and depression at this point. I was afraid of the number of days passing by, no change in the lockdown. No fix or answer to my head problem. No sign of when I could go back to work. Not enough money was coming in on my end to help babe with bills. He never complained about it, but I know having his parents with diabetes and CHF wasn’t easy, and adding me to that pile of worry and medical bills tipped the scale on his attempts to stay positive.
I broke down talking to him, I had to tell him how I felt and let it all out. He knew how much I needed to vent. He knew all I needed was for him to listen and hold me. And he did just that. His words of encouragement when I caught my breath and started gathering myself were these, ‘This is when we adapt to this completely. This is when we go into survival mode and we HAVE to deal with all that is on our plate. This is when sick or not, positive or not, we HAVE to take this with the good and make this work. We have each other, we have a roof over our head, we have food (and toilet paper lol) and this is all we need. We are scared together, but we will make it together. You need to get better before you can do anything else. There is no work or income if there is no YOU, babe. I’m here, and I got this, and I got you.’
See what I mean? He has his way of calming my insecurity and fears, even when he is also afraid. I only wish my words or encouragement and comfort make him feel the same. He’s stepped up in the most extreme ways these past few months, and for that, I am eternally grateful.
On April 29, 2020 at a rheumatologist follow up, I tested positive for ANA again. She advised possible brain biopsy to see what could be on inside my head. I panicked and said absolutely not, not right now. There has to be another way, didn’t there? Unfortunately, I got the same answers as before: it was just too confusing to figure out unless we went in to take a look. The pain and pressure on my right temple may have been something blocked in there. This could cause a stroke, she said. But the choice was mine to make. Did I want to do this?
After a follow up with Neurologist about this, they did not recommend I go through with this surgery yet. They gave me medication and I had to have it delivered, but there were risks and side effects. Vivid dreams. Nightmares. Upset stomach. ‘Try it for a few weeks.’ Maybe this would help the pressures in my head subside.
I was in bed on May 13, and suddenly I felt my head sink into the pillow as aching pain hit my ear and neck on my LEFT side, immediately I felt numbness shoot down my left side, arm, shoulder, leg, foot. I couldn’t speak or scream. I started drooling immediately, and I couldn’t do anything but stay put in bed until it passed. I was alone. Babe was at work, the ONE day he went to work, this happened. His dad was not there. His mother was asleep in the other room. I couldn’t do anything, and of course, the first thought through my head — my kid. I hadn’t called her yet that day. What if this was it, and I faded away here and now, and I didn’t check on her? Babe wasn’t there, I didn’t text him one last time. My parents, they were alone, and I hadn’t texted mom yet that day. I cried silently in my bubble of fear in bed. 6 minutes passed. The bloody discharge came from my ear. That explained the pop.
I started to feel my feet come back to life, my arms began to loosen up, and I manage to sit up and call for babe’s mom to come help me. My neck is stiff, my shoulder hurts, and I need ice. I have to tell babe. I text him, and he immediately calls me to check on me. He’s coming home asap. I called my mom and daughter to check on them too because I felt so uneasy and afraid. I called my neuro again to inform them of what happened. Go to ER, they said but because of covid, I was too scared to go there. I didn’t want to. I took my pills and managed to fall asleep.
On May 19, I collapsed again, this time in the room. I hit the floor and closet door. Babe woke up and saw me on the floor crying from the same symptoms. My body locked up again. I didn’t understand this. I took my medicine again, but it made me fall asleep, and I got drowsy. I hate this feeling. I called to set up another follow up with my neurologist for May 26, possibly in-office. Still a waiting game here, and I was running out of hope with this. I just wanted to know what this was or could be. Some sort of answer or diagnosis. That was all I wanted. The right kind of treatment. It had been months, and I didn’t have any real hope of recovery.
On May 26 — bad news: my neurologist recommended I seek higher specialization help. He advised I go to Mayo Clinic or John Hopkins for further examination and screenings of my symptoms because they did not feel they had the resources to help me any longer. My symptoms and condition was just not something they feel is in their ability to help with at this stage.
Short-term disability period was ending, and as of June 1st, I was to go back to work. All this time, lost. All my hope — down the drain. I’m even more scared now, what did this mean?! Was what I had going on life threatening? Could it be? Now, to find my way back to normalcy in this new normal out there. THIS was the world I live in now. I had to accept nothing came of the last 5 months of suffering at home. Nothing came of crying. No fix or solution was found. Only possible ‘maybe diagnoses’ that can’t be formally noted because they are not 100% certain.
So here I am, typing up my news of the day wondering if it’s even possible for me to win this neurological war I have going on in my head, not knowing how to come back from this. How to make sense of this. How to learn to function with these symptoms and try to lead a normal life. Is that even possible anymore?
This brings me to today, the George Floyd news, the protests, the vandalizing, the innocents hurt, the children affected, the loss the world is facing. Feels like we are all caving. We all have our battles, our demons to face. I only wish I could find the words to express how I feel deep down, how dark of a place it is in my mind when this illness takes over. It’s like the lights go out and I freeze. I think if there is anything you should take away from this, it’s that we all feel this way at some point. But what is most important is what you do when those lights come back on. How will you regain control?
One thing I know, is I’ll for sure be counting every step of the way from here on out. One step at a time. The truth is, the world is still spinning out there whether I am ready to face it or not. The world is not going to press pause and wait for me to get back up off the floor. My inner voice keeps telling me that I just have to take it all in, and let it be. Accept it. Adapt to it. I have to surrender to this.
Surrender to the anger and fear, surrender to the frustration and tears of confusion Surrender to the uncertainty of what the world is and of the unknown, accepting that what will become of us has not been decided yet. Surrender to the annoyance of needing to wear a mask and gloves to go outside everyday. Surrender to my own doubts and reservations about myself and how this condition can either break me or help me to move forward. It took me writing all of this out, to vent, to scream, to cry, in order for me to realize just how much I let the water rise in my own pool of pity and that I can’t do it anymore.
I failed to understand that even though the world I knew turned into a memory months ago, I survived this, and no matter how much of the world changed and faded away, I stayed the same, I survived my mental hurricane. And so will you.”
This story was submitted to Love What Matters by Betty Zambrano. You can follow their journey on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more stories like this:
‘My daughter was knocked out. Joking, I asked if she was breathing. Until I felt no movement.’: Mom loses daughter to undiagnosed childhood diabetes
‘I kept getting multiple UTIs. A male doctor asked, ‘Do you think the pain might be ALL IN YOUR HEAD?’ I felt mortified.’: Woman with chronic urinary tract infections urges ‘you are not alone’
We’re letting you go.’ I was too sick to work. They bullied me for months and couldn’t handle my illness.’: Woman fights for mystery illness diagnosis, ‘I am chronically strong’
SHARE this story on Facebook or Twitter if you know someone who may benefit from this story.