What I’m Struggling With During COVID-19 and Why I’m Thankful Anyway.

This isn’t exactly a well put together blog post where I convey a wealth of information.  Those are my favorite kind to share, but I’ve been struggling to write one since March.  Like many people during the time of COVID-19, I’m not in a great place mentally, physically, or emotionally.

This post is more a catalog of what I’ve been struggling with over the past few months, with a few positives thrown in.  I am trying to be thankful for any good thing during these rough times.

My seasonal challenges with my toddler.

In March, my son was evaluated for his speech delay.  It was long overdue; I was asked by his pediatrician to start speech therapy in August 2019, but I put it off until January 2020 (I really thought he would start talking on his own), and then had to wait until March for our appointment.  When we finally met with the speech therapist, she recommended having weekly appointments for the next six months.

I was overwhelmed.

The next week, everything in my city shut down due to COVID-19.  It took a two to three more weeks before the therapy office could figure things out and offer us virtual speech therapy.  For a toddler.  How does that work, you might ask?  Well, basically the speech therapist watches from my phone camera and coaches me – I was attempting to do her job with her assistance.

I used my Tablift tablet holder to prop up my phone for many of these appointments – I never thought I’d be using it for virtual doctors’ visits!

Around 10 weeks into our virtual care, Toddler Meena began to throw tantrums.  A lot.  He was getting frustrated easily, in part from not being able to talk, and the virtual appointments became nearly useless because he wouldn’t work with me.  He was really having a hard time in all areas of his life at that point. 

Thankfully, by that time the office had worked out protocols for us to return in person.  This scared me, as a high-risk, immunosuppressed person, but we decided that we needed to address his speech issues in-office and we’ve been as careful as possible during our office visits.

Toddler Meena and me at his wellness check in June.

During speech therapy, it became clear that Toddler Meena was struggling physically.  He’s always been a little behind developmentally, but I wasn’t too worried about it.  At the recommendation of the speech therapist, we had an occupational therapy (OT) evaluation.  Guess what?  We were given weekly appointments for the next six months!  I’m exhausted.  It’s so hard for me to drive him to both of these appointments every week.

The OT told us that Toddler Meena has proprioceptive sensory processing disorder; this means that he struggles to understand sensory input to his muscles and joints.  It’s been described as a “traffic jam in the brain”, and it disrupts balance, spatial orientation, and body awareness.  In his case, he seeks deep pressure because it helps him figure out where his body is in space.  It explains why he is constantly pushing things around the house – the laundry baskets, any box he can find, the stool, the ottoman, etc.

While it was good to know what was going on and how to start helping him, receiving this diagnosis for Toddler Meena was upsetting. He also has some feeding issues in the mix, because of the sensory issues, developmental delays, and flat-out pickiness, which has further complicated things.

I’ve been given so many instructions and homework assignments from speech therapy and OT that I can barely keep track of them.  And I can’t do some of them because of my lupus, which makes me feel so guilty as a parent.  Recently I’ve found myself too sick to drive him to appointments and my husband has had to take us (and then wait in the car because only one parent can come in due to COVID-19 protocols).  So then I feel guilty as a parent and a wife.  But wait, that’s not all!

Struggling with lupus.

I had Nexplanon – a birth control implant – inserted in March and had it removed seven weeks later during one of the most outrageous lupus flares I’ve ever had.  After struggling with acute illnesses for months beforehand, this was the last thing I needed.  Once the Nexplanon was removed, my flare gradually subsided, but it set off a pain cycle that was hard to end.

I ended up starting Benlysta infusions to try to get my lupus under control.  The infusions have been a bit exhausting but it seems like they make work out this time (I tried the injections last summer but had too many side effects). 

You can read my Lupus.net articles on how I prepared for my infusions and about my first infusion experience.

Additionally, I’m struggling with the way that people are moving life and activities outside as much as possible due to COVID-19. Of course, this is good for the general population, but I can’t easily be in the sun because of my lupus photosensitivity.

My son loves to be outside – it’s all he wants to do, and I sit under my massive umbrella, with my sun hat, SPF shirt, and long leggings, just watching him play.  Every time I step out from underneath my umbrella and feel the sun on my skin I feel so sad that I have to deal with this.  I just want to play with him in the yard without facing the consequences of a sun-induced lupus flare.

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A post shared by Ava Meena (@mymeenalife) on May 7, 2020 at 11:18am PDT

Furthermore, my neck pain has been escalating – primarily from being so exhausted and unable to do my therapy exercises.  I can’t even go on walks with my family anymore.  It’s been years with this neck pain and, after trying and failing to improve it so many times, I’m starting to fear that I will never be able to resolve it.  It’s an added layer of hopelessness that I really don’t need during this season.

My lupus has really been affecting me cognitively and I frequently haven’t been able to drive or even think straight.  It’s been making my fingers flare up again and I can’t use them to do things I need to do for my son.  Some days I’m filled to the brim with frustration and I have no outlet to get rid of it.

Missing out on blog work.

Due to my poor health and time-consuming toddler challenges, I haven’t been able to do much work over the past few months.  When I can work, I have been putting most of my energy into paid opportunities – partially because my husband had to take some unpaid leave as a result of COVID-19.  Also, all of Toddler Meena’s extra therapy appointments and accommodations are costly.

In May, I started pouring my heart into a blog post about how my lupus has evolved over the past 10 years – this was inspired by my 30^th birthday – but I’ve hit a wall with that article and just can’t find a way past it yet.  It’s discouraging to work on a post for so long and still be far from being able to share it with the world.  It’s a hard task though, to write about how I’ve been struggling for so long and progressively gotten sicker.

I landed an amazing sponsored blog post opportunity in May – one of the best and highest-paying ones I’ve ever gotten.  I worked my tail off on it and was so proud and excited to share it.  After submitting it I waited for it to be approved.  And waited.  I was asked to make a revision, and then I waited another month.  Then, I got an email that the sponsor decided to cancel the campaign.  I still got paid for my work, but I am not allowed to share the blog post or put it in my portfolio.  It had meant so much to me – this truly awesome opportunity – and it was squashed.  It was upsetting and wearisome.

My life challenges.

When COVID-19 first started getting serious I felt sheer terror about catching the virus. When my husband would go to the grocery store I would shake with fear and wake up each day wondering if it was the day we’d start having symptoms.

But I can’t sustain that level of stress. So my worry has just been kind of buzzing around like background noise, and every once in a while the knob gets cranked up and I am sharply fearful again. Like when a neighbor gets too close to my husband or when the car mechanic didn’t wear a mask.

I miss playdates.  I miss being able to go places without masks and hand sanitizer.  (Actually, I have always carried hand sanitizer since my lupus diagnosis.) I miss going shopping at the grocery store.  I miss hugging people.

I really miss being able to meet up with people without feeling like I’m interrogating them.  I have to ask where they have been, what they’ve been doing, and how they are adhering to lockdown measures.  Have you been eating at restaurants?  Have you been going around to other people’s homes?  How many households have you joined with?  Are you willing to refrain from certain activities and quarantine before visiting us?  It puts a lot of stress and pressure on social interactions.

Someone in one of my chronic illness groups wrote this (and gave me permission to share it):

“… know that you are trusting anyone you share close space with your life – as in they need to be following all the same precautions you are.”

I think she really hit the nail on the head.  It is a life or death situation with COVID-19.

I ask family if they will stay six feet from us if we do meet up.  I dislike having to put controls on situations when others want to see us. But my family has to be safe.

Photo by Leslie Mason Photography.

Sometimes it’s just easier (and safer) to say no.  But it’s also lonelier to say no.  My son will only be two once.  He will only be in this stage of development once.  We can never get these years back – these years where he’s uniquely interacting with other kids and fascinated with every single thing on the playground (which is closed and he doesn’t understand why he can’t play on it and we can’t adequately explain to him that it’s not his fault or a punishment and it really doesn’t help that HE DOESN’T TALK.)

There it is again, my frustration boiling over. 

We also had an awful accident a few weeks ago.  Toddler Meena, who absolutely loves to slam doors, shut a door on my beloved bird Koopa.  I don’t think Toddler Meena had any idea what was happening, especially since Koopa was on the top of the door, but it was traumatizing for me and Koopa.  We rushed Koopa to the vet and it was nothing short of a miracle that she survived.  She is still recovering weeks later and watching her feel sick from her injuries has been agony for me.

So, to say I’ve been struggling lately would be a vast understatement.  I’ve been under attack from lupus, battling my own disabilities to try to get my son the care he needs during a pandemic, missing my pre-pandemic work schedule, mostly stuck inside my house trying to keep everyone safe but failing miserably when it comes to my precious bird, and other hardships that are too private to include in this blog post. 

So what am I thankful for anyway?

What I’m thankful for right now.

I’m thankful that my son has amazing therapists.  The two women who provide therapy for him are phenomenal at what they do and are helping him improve every week.

I’m thankful for my lupus support group being able to meet virtually, the virtual doctors’ appointments that were so essential in the beginning, and being able to video chat with friends and family.

I’m thankful for my amazing mom friends who have provided support in many ways throughout this hard season.

I’m thankful that my husband has been able to work from home since March, even if his constant presence drives me up the wall sometimes.  I’m thankful that we were okay financially despite his 10 days of unpaid leave, and also that we were able to enjoy some of his required time off with a quarantine vacation.

I’m thankful that I never had to go without hydroxychloroquine – a crucial medication for my lupus – during the mad scramble for prescriptions when people thought it could help with COVID-19.

I’m thankful that my new rheumatologist gave me real pain medication for the first time when I went through my awful flare in May.  (In past posts when I’ve referred to opioid pain medication I’ve been referencing tramadol, which is a very weak opioid, but this time I was given hydrocodone.)

I’m kind of thankful that wearing a mask covers up the awful bumps that have developed on my malar rash over the past few months.

I’m thankful that I can receive Benlysta infusions.  Though I was hesitant to start them, I was able to make that choice – and not everyone can.  They cost $6,750 a pop – that’s almost $90,000 annually.

I hope this pandemic brings some positive changes, like families spending more time together, essential workers being treated better, and more paid sick leave and time off.  That may be a pipe dream for the USA, but I’m trying to remain hopeful.

It’s been a tough time, and it looks like a long, rough road ahead.  What kind of things have you been struggling with in this season?  And what are you thankful for?

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Featured photo by Leslie Mason Photography.