My Experiences Going to the Doctor During COVID-19.

When my city’s stay-at-home order when into effect on March 25, I was nervous about more than just COVID-19.  As a chronically ill person, I was worried about the potential loss of medical care during the shutdown.  My concern was heightened by the flurry of phone calls I received – two days before things closed – rescheduling all my upcoming appointments.

During the first six months of the COVID-19 pandemic, I had one telehealth appointment and 12 in-office appointments.  The majority of my in-office appointments were for infusions or urgent eye issues, but the shift from telehealth to in-office happened more quickly than I expected. 

It took about two months for my local medical offices to develop COVID-19 protocols and resume in-office care for non-urgent issues.  My son, Toddler Meena, had around 10 telehealth appointments and 25 in-office appointments during the first six months of shutdown. Of course, I took Toddler Meena to almost all of his appointments, so it feels like I’ve been going to medical offices non-stop since July.

In this post, I’m focusing on the first six months of the pandemic (March-September) and I’ll talk about:
– loss of medical care
– what it was like going to the doctor early on in the shutdown
– the hydroxychloroquine shortage
– handling virtual speech therapy with a preverbal two-year-old
– making the decision to switch from virtual to in-office care as a high-risk person
– what it’s like going to appointments frequently even as the pandemic is ongoing

My Healthcare Experiences During COVID-19.

The coronavirus pandemic became ferocious seemingly overnight.  One week I was going grocery shopping and getting my three-month blood pressure check while trying not to touch my face, and the next week I was stuck at home (and safe at home).

Canceled appointments & the search for meds.
In the first week or two of shut-down confusion, I received several phone calls to reschedule and delay medical care.  My first call was from the ear, nose, and throat doctor (ENT) to reschedule my hearing test that was less than 24 hours away.  I had been suffering from severe tinnitus for three months at this point and I felt very anxious that whatever was going on with my ears would have to wait longer to be checked out.  In April, they called to reschedule it for a second time.

My son’s two year well check was also rescheduled from May to June, but he wasn’t due for any vaccines so this was not as stressful.  We also got a call that speech therapy was on hold until they could figure out virtual therapy, which took a few weeks.

Thankfully, we didn’t miss out on any essential medical care, but many people did.  Some people didn’t have the option to go to their doctor or hospitals, and others were too afraid to go.  Many physicians were alarmed that the lockdowns would cause mass casualties:

“The downstream health effects…are being massively under-estimated and under-reported. This is an order of magnitude error,”

…Other silent casualties:  “150,000 Americans per month who would have had new cancer detected through routine screening.”

– 600 Physicians Say Lockdowns Are A ‘Mass Casualty Incident’

They were right – many months later healthcare workers are reporting an unusual amount of sick people alongside a massive COVID-19 cases.

“People with heart problems, cancers, strokes, and other diseases found it harder to get medical help, and some sat on their illness for fear of contracting COVID-19 at the hospital. Now health-care workers are facing an influx of unusually sick people at a time when COVID-19 has consumed their attention and their facilities. “We’re still catching up on all of that,” says Choo, the Oregon physician. “Even the simplest patients aren’t simple.”

– COVID-19’s Third Surge Is Breaking Health-Care Workers

The biggest medical issue I faced due to COVID-19 was the hydroxychloroquine shortage.  The drug was considered as a potential treatment for COVID-19 and all but disappeared from the market.  It seemed like the world was turned upside down as I watched people in my lupus groups agonize over not being able to fill their meds. 

Thankfully, I was able to get my prescription filled, even during the height of the shortage.  It took calling around a bit to find a pharmacy with it in stock.  I decided to have my prescription mailed to me and then I panicked a bit because I was afraid someone might steal it before it got to my home.  But I did receive it and never had a lapse in my meds, which I know from experience even missing a week of hydroxychloroquine will cause me to get very sick.

Rheumatologist telehealth visit (April).
This was my first and only telehealth visit so far during the pandemic.  My rheumatologist’s office has its own portal and put me in a virtual “waiting room”.  When my doctor suddenly popped up on the screen I wasn’t totally sure if it was her or someone to check me in, because I had only met her once.  She seemed stressed and distracted – and I can’t blame her. 

Obviously she couldn’t perform an exam, so I felt more responsibility to self-evaluate and tell her how I was doing.  Overall I was doing well so it was good timing for a telehealth visit.  I was able to address all my concerns and we decided to delay getting my labs drawn because they had been stable for two years.

Pediatric telehealth visit (May).
My son developed a rash on his leg and I was able to get a same-day telehealth visit with the nurse practitioner (NP).  This time someone called to check him in and walk me through the login process via Microsoft Teams.  This seemed efficient for the medical office to have everyone ready before the appointment.  The NP was great and I was impressed at her ability to diagnose the rash via my phone camera with a flailing toddler.

It was during this appointment that I learned an important piece of information – we must physically be in North Carolina to receive virtual care through Atrium Health, where most of our doctors work.  There’s some legalese behind it, especially since most of the healthcare professionals are only licensed in NC.  We live in NC and receive all of our care in NC, but we live very close to the South Carolina border and spend time at our in-laws’ home in SC. 

Later in the year, when my son got the stomach flu at my in-laws house, we had to rush him home in case we needed a virtual appointment.  This was also a problem for us when we were at a lake house in Georgia and Toddler Meena hit his eye – we nearly had to cancel our trip to come home and have a telehealth visit.  Thankfully, the triage nurse was able to work through the problem with us and the swelling around his eye resolved

Virtual speech therapy (April-July).
Thankfully, we already knew the therapist because Toddler Meena had his evaluation for speech therapy a week before things shut down.  It took the office about a month to get telehealth set up.  We started his once-a-week appointments in late April and it was stressful.  First, I tried using the computer, but the audio didn’t always work and the webcam quality wasn’t good enough for the therapist to clearly see what Toddler Meena was doing.

I switched to using my phone so she could see what we were doing up close and that worked well for a while.  I have a lot of joint pain in my fingers so my hands would hurt a lot after every appointment.  Occasionally, the Microsoft Teams app would not work on my phone and I would run to get my husband’s phone.  It was also difficult because Toddler Meena was at the age where he was becoming more interested in my phone and frustrated that he couldn’t play with it.  We also had a hard time when she needed to see a wider view; I used my tablet holder during some visits but it was awkward and would get knocked over.

Aside from technology issues, the appointments were going well.  The therapist would usually ask me to prepare some kind of activity using things we had around the house.  Then she would act as a coach and instruct me what to do.  I was acting as a parent and speech therapist – with her guidance – and it wasn’t easy.  One positive was that my husband and my in-laws could easily attend the virtual appointments so we all learned together. 

Toddler Meena did make progress and I was impressed by how well the therapist was able to do her job over a screen.  However, after about two months he started having a lot of tantrums and did not want to work with me.  After several appointments where Toddler Meena spent almost the whole time avoiding me, refusing to work with me, or screaming, we made the tough decision to start coming into the therapy office again (more on that a bit later).

My first in-office appointment (May).
I had no choice but to visit my OB/GYN in May to have my Nexplanon implant removed.  Even though this type of birth control is thought to be safe for lupus patients to use, I had the worst lupus flare of my life shortly after it was put in.  In total, I only had it for a miserable seven weeks.  I got it about right before the shutdown so I found myself going to the doctor’s office around six weeks into lockdown.

I was nervous to walk into a doctor’s office for the first time since everything had changed.  I was screened before I could go in, though.  A woman sat at a desk outside the office door waiting to take my temperature and ask the COVID-19 screening questions.  She put a sticker on my forehead that took my temperature, which was new to me and kind of neat.  Perhaps they did not have forehead thermometers yet, because when I went back later in the year they were no longer using the stickers.

I stood at the six-foot marker to check-in.  There were only a few seats available – most of the chairs had papers taped to them so that people would sit six feet apart.  Everyone else in the waiting area was on their phone, but I wasn’t touching anything after pressing the elevator button until I could wash my hands.  I was still out of hand sanitizer.

Hand sanitizer became liquid gold early in the pandemic.  Mural by Darion Fleming.

This was my first time wearing a mask and it was kind of awful.  I’m thankful that I had one – a dear friend of mine dropped it off shortly after everything started.  I spent an hour at the office and ended up sweating a lot and exacerbating my dry eye because my breath would go into my eyes.  I ordered nice, comfortable masks shortly after that appointment and it’s amazing how, half a year later, wearing masks is almost second nature.

Otherwise, the appointment was business as usual. My doctor confirmed I didn’t have any sort of infection or other issues that could explain my symptoms, so he went ahead and removed the Nexplanon.  It was painful because it had been inserted incorrectly, but I was relieved when it was over and my symptoms did improve over the next few weeks.  I went home and showered because I wasn’t sure if COVID-19 particles were stuck to my clothes or hair – in May it was still thought it could transfer via surfaces very easily.

In-office wellness checkup (June).
The two-year wellness check was Toddler Meena’s first in-office appointment during COVID-19.  We were told to wait in the car until we got a text message telling us which waiting room was ready.  We got our temperatures checked and headed inside, but our room wasn’t actually ready.  We were the only ones in the large waiting area, though. 

This was little man’s first time seeing me wear a mask and he was perplexed but overall pretty good about it.  He never likes to sit me with during appointments and this was still the case despite all the communal toys being removed.  He wasn’t interested in his toys so I let him watch TV in order to get him to stay with me.

We were finally called back and he got his measurements taken.  After waiting on the doctor for about 10 minutes, a staff member came in and offered to put something on the office computer for us to watch because the doctor was delayed.  It was unusual to watch a video on the exam room computer!  

I became more nervous the longer we sat in the room because it occurred to me that others waiting in the room may have removed their masks while they were without supervision.  I couldn’t help but wonder if there were ominous COVID-19 particles floating in the air.

Eventually, we saw the doctor, who was new to us as his previous pediatrician had left the practice.  She recommended that we take little man for a hearing test and pediatric dentist visit.  It is standard procedure to test hearing when a child has a speech delay, but we knew that Toddler Meena had excellent hearing and didn’t want more exposure.  We did take him in for an eval and his hearing was fine.

I have not, however, taken him to get his teeth checked.  He has no obvious issues and dentist’s offices make me more uncomfortable due to the need to remove masks, so I’m sticking with my decision for now.  (For the record, I did go for my dental checkup and I’m not suggesting you skip them.  Unless, perhaps, in the case of a slightly uncooperative, preverbal, wonderful toddler who doesn’t like hands in their mouth.)

Infusion visits (June-July).
The Nexplanon set off a horrendous lupus flare that I had trouble recovering from.  Even though my symptoms improved after it was taken out, I remained pretty sick.  My rheumatologist encouraged me to try Benlysta infusions (I failed the injections in 2019) and I hesitantly agreed. 

The approval went through more quickly than I expected and before I knew it the infusion nurse had scheduled me for Benlysta loading doses on June 4^th, June 18^th, and July 2^nd.  I was very nervous about these appointments because I expected them to last for up to three hours and I was not happy about sharing indoor space with other people for that long during the COVID-19 pandemic. 

Ultimately I decided to move forward with the infusions because I was so unwell.  I’m thankful that I had the option; I have heard from several chronically ill people that have chosen to forgo infusion treatments during COVID-19 and it’s been detrimental for them.  Additionally, I expected that the others in the infusion suite were likely high-risk, like me, and would hopefully be exercising caution.

Overall the infusions went well.  The infusion suite was rarely full, everyone was spaced out as much as possible and wearing their masks, and it took about 1 hour 45 minutes for the infusions.  During my fourth infusion, I saw my rheumatologist.  We didn’t discuss an e-visit because I was already at the office for my infusion anyway – I just wheeled my IV pole down the hallway to an exam room.  However, it seemed that in-office visits were already standard again.

After my third loading dose of Benlysta, I started to experience depression as a side effect.  This made me nervous but I wanted to give it another try to see how things would go.  After my fourth infusion at the end of July, I experienced severe depression and suicidal ideation.  We decided to stop the treatment because the depression was too intense and dangerous.  I was sad to lose the treatment option but thankful that I had remained safe throughout the infusion therapy.

If you’d like to read more about my experiences with Benlysta, you can read these articles I wrote for Lupus.net:
Preparing to Start Infusion Treatment for Lupus
My First Benlysta Infusion
My Experiences With Depression From Benlysta

In-office speech and occupational therapy (July-present).
Once it became clear that Toddler Meena was not going to continue progressing in virtual therapy, I asked about coming into the office.  There were procedures in place about face masks and for cleaning rooms and equipment, plus they were staggering appointments so that people weren’t in the waiting room together.  Nonetheless, I found it to be a very difficult decision.

Even though I had been to several in-office medical appointments at this point, this felt very different.  Not only was it every week, but it involved going to a building frequented by many other young children who are unable to wear masks.  Toddler Meena also touches everything and was going through a phase where he compulsively put his fingers into his mouth and nose as a coping mechanism.

I didn’t want to delay Toddler Meena’s care, so we started going to in-office appointments in mid-July.  We also were able to get into occupational therapy (OT) around that time, as they finally had an opening, and I was grateful to have it in-office because it’s a physically demanding job and I wouldn’t have been up for doing it virtually.  I was really scared to be going in twice a week for therapy but I got used to it.  As I’ve watched Toddler Meena progress and develop strong, positive relationships with his therapists, I have become surer of my decision.

The gym for OT.

Wearing masks has been a barrier to speech therapy.  A benefit of doing virtual therapy was that we were able to see the therapist’s face.  There are clear masks available in-office but they fog up a lot and aren’t that useful.  Nonetheless, wearing masks is essential right now.  One week, we saw an alternate therapist who asked if she could remove her mask during therapy since she felt well, which upset me so much I ended up reporting her.  It’s a clear violation of protocol and very inappropriate. 

Nearly half of COVID-19 cases happen because people are most contagious two to three days before they develop symptoms.  Just knowing she is in the building not wearing a mask has caused my anxiety to spike again.  Additionally, she often comes into the gyms and asks to share space with other kids (also against protocol) and this has caused some tension among parents and therapists.

For a time the practice was requiring us to wear their hospital-grade masks every time we came in, but they have stopped offering them.  It is a disturbing trend I’ve seen nearly everywhere – precautions are lessening even as cases are spiking.  Why did we all stay home in March if we are going to carry on as normal in the fall despite things looking even worse?  I know pandemic fatigue is difficult, but protecting my family feels more important than ever.

Every week I wonder if we should switch back to virtual therapy as COVID-19 cases climb to new records (nearing 200,000 cases a day at the time of writing).  Toddler Meena needs his therapy to continue making progress, so this is a tough spot to be in. 

In-office appointment with my primary doctor (July).
I see my primary doctor every three months for my blood pressure follow-up, as well as to address any new issues (there’s always something).  I was a little surprised that this appointment wasn’t offered as an e-visit, but I understand the importance of checking blood pressure in person – even though I have a monitor at home.  Additionally, we had adjusted my medication dosage at my previous visit so it was important to make sure things were controlled.

It was a hot July day and when I got in my car, which was parked in my driveway, I relished the heat.  It’s like a sauna and I love the pain relief the heat brings.  So it was not a surprise that when I arrived at the office only 12 minutes later the check-in staff told me my temperature was a little high.  I had been worried about this since the forehead temperature checks started as I often run hot and I have vasodilation in my face due to my lupus rash and rosacea.  The two can make my face give off substantial heat, especially if I’ve been in the sun.

I started carrying an oral thermometer just in case my rash made the forehead temperature too high (I also read that you can ask them to check your earlobe or your wrist).  I had not had an issue before this appointment, but normally I drive my husband’s car, which is parked in the garage and much cooler, whenever I need to take Toddler Meena somewhere.

After waiting anxiously for a few minutes, my temperature was fine and I went into my doctor’s office.  I was a little taken aback when I saw my doctor.  I could tell immediately that she was rundown and not herself – and who could blame her?  She’s a kind, optimistic person who is very dear to me and an excellent doctor. 

I was so sad that I couldn’t see her genuine smile behind her mask; I didn’t realize just how much it meant to me.  When we addressed my weight she told me that nearly everyone had gained weight since March and to try to get back on track when I could.  It was entirely different from my pre-COVID-19 appointments with her and my heart ached for what she must be going through as a medical professional.

In-office appointment with a specialist (August).
After failing lidocaine injections, and many other treatments for my chronic neck pain, I met with a doctor who specializes in administering Botox for muscle spasticity, migraines, and chronic muscle tension.  This appointment was early in the morning and there was a wreck on the interstate nearby, so when I arrived there was no one available to do the COVID-19 check-in procedures.  One of the doctors came out and took my temperature but none of the other usual things were done.

The air conditioner in the building wasn’t working and everyone was overheating – even more so thanks to wearing masks.  There was a large machine working to ventilate the office and it was loud enough that I couldn’t hear well.  I felt awkward when I told one staff member I couldn’t hear her because it turned out she hadn’t been talking.  I simply couldn’t tell because of the noise and the mask.

This office had turned half of their waiting room chairs around to prevent people from sitting too close together.  I couldn’t help but chuckle – it was certainly easier than taping them up or removing half the chairs like other offices had done.

Otherwise, the appointment went as normal.  I did get approved to try Botox injections and I’m grateful for the hard work of the doctor in getting the notoriously difficult insurance approval.  I returned a few weeks later for my injections.

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In-office visits with an eye doctor (August-now).
One day towards the end of August, my lupus started to flare.  The next morning I woke up with a swollen, red, painful right eye.  My vision was blurry and tears were constantly leaking from my pitiful looking eye.  Thus began my barrage of eye doctor visits.

I couldn’t get in to see the specialist who performs my hydroxychloroquine eye exams, so I went to the doctor who does my regular vision exams.  However, when I saw that she was not wearing her mask correctly (it was hanging off the very bottom of her nose), I became upset.  She was the first doctor I observed not wearing a mask correctly, and I found it particularly distressing since eye doctors are often very close to your face – less than a foot away – when they are doing a slit lamp exam.  Then she touched my eyelid with her bare finger without washing her hands – so I left and did not return.

My specialist was still unavailable, however, and I felt lost and was very concerned about my super inflamed eye.  I finally was able to get into a different office.  At my first appointment, I walked inside the office and was harshly reprimanded by a staff member to go back outside and read the sign on the door.  I had missed it due to my poor vision – the sign instructed patients to knock on the door and wait for a staff member to take their temperature before going inside.  There wasn’t enough room in the entryway, or enough staff, to set up a table outside like many offices have done, but this strategy created quite a traffic jam between the door and the elevator.

I have continued seeing the eye doctor every one to three weeks for the past three months.  I seem to have treatment-resistant Thygesons disease, which is causing inflammatory lesions on my cornea that impair my vision.  It’s been a difficult time, not only because of my vision issues but due to the eye doctor’s office being large and frequently having several patients in the waiting room not wearing their masks correctly. 

I don’t have the option to switch to virtual visits for this issue and I’m frustrated that I have this unusual problem that isn’t resolving with any of the standard treatments.  I have no choice but to continue being evaluated frequently.  Furthermore, the inflammation could cause permanent damage if we don’t get it under control.  The steroid eye drops I’ve been using could also lead to more eye problems if I’m not able to wean off them soon.  It’s been a lose-lose-lose situation.

I had to cancel several appointments because my vision has been too poor to drive, and I’ve had to get my husband and my in-laws to take Toddler Meena to many of his appointments.  It’s also made it harder to work on the computer and my blurry vision has made me feel quite discouraged.

Drive-through flu shot (September).
Flu shots are even more important this year, and our family got them early.  The pediatrician’s office moved their flu shot clinic outside, however, and came to our car to give Toddler Meena his shot right in his car seat.  The poor thing had no warning he was about to get jabbed, but he got ice cream afterward.  I’m thankful we didn’t need to go into the office to get them – if only Mr. Meena and I could have gotten drive-through flu shots as well.  We went to a local pharmacy for ours.

In-home behavioral therapy (September-current).
Due to some minor behavioral and developmental issues with Toddler Meena, we decided to add a behavioral therapist to our collection of medical professionals.  He comes to our home for appointments, which is great because he gives us feedback about Toddler Meena in his own space – plus we don’t have the additional exposure from a medical office.

These appointments feel lower-risk because the therapist is wearing a mask the entire time.  Honestly, he is probably undertaking more risk, because we’ve been breathing in our home all day and Toddler Meena can’t wear a mask.  It’s been a beneficial therapy for everyone and little man has taken a huge liking to his therapist.

Final thoughts on medical care during COVID-19.

There have been many fluctuations in how medical care has been handled during the first six months of the pandemic.  At first the medical offices were locked down and only allowing the most emergent appointments, but now none of my doctors are offering virtual visits as the standard anymore – only the pediatrician is choosing virtual whenever possible.  While most of my appointments have required me to come in, such as the infusions or my urgent eye doctor visits, I am surprised at how quickly in-office appointments became the norm.

The six-foot markers, temperature checks, masks, litany of COVID-19 symptoms recited by check-in staff, and largely empty waiting rooms have become so normal.  At this point, I usually only get nervous if procedures aren’t being followed or done correctly.

I can tell that medical professionals are just as fatigued as the rest of us.  Some are not as diligent about washing their hands or cleaning surfaces as they were in the beginning, and some groan while they do it (not that I blame them).  In the beginning, offices were scheduling fewer appointments in order to have less people in the building (yay lower wait times), but recently I’ve seen them filling up more.  I don’t expect the doctors’ offices to close again even if there is another shutdown.  The procedures they follow keep everyone as safe as possible, but my biggest concern is people not following guidelines because they are just too tired of it all. 

In this post, I’ve only talked about my experiences from March through September, though I’ve had 14 appointments for myself and 18 appointments for my son in October and November – it never stops!!  It’s hard to believe we’ve gone to so many medical offices so frequently during the pandemic.  If there is enough interest in this post, then I’ll write another covering the next six months of our ever-changing medical care.

I’m really curious to hear from others, especially other chronically ill people, about what your healthcare experiences have been like during COVID-19.  Have you been given the option to get the care you needed?  Do you feel safe going to your doctor’s offices?  Have you found the new telehealth options liberating?  Please share the good and the bad with me. 

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