This year was not one I have been eager to reflect on. I had to force myself to start the process of reviewing 2020 for my annual digest. But, once I got started I was rather surprised to remember how many positive things did happen this year. Writing this digest is always a therapeutic process.
There’s not a big trip to share, but we did find smaller ways to travel and enjoy time together. So much time together. It was a very tough year for my health and I spent a lot of time in pain. I also celebrated a blogiversary, got a new freelance job, added phenomenal doctors to my healthcare team, and started growing a human – another little Meena is expected in June 2021.
Blog highlights.
This year my blog turned five! It’s almost fitting that I only wrote five blog posts this year. I say almost because I’m disappointed that I haven’t been able to dedicate more time and energy to this space. This blog has suffered because I’ve been drowning a bit in chronic illness, stay-at-home-ness, and the demands of parenting a toddler.
My blog was also affected by COVID-19; my traffic plummeted once the virus began to hit hard in March. After watching my traffic grow from 2015 to 2019, it was discouraging to watch it drop 40% this year. However, it wasn’t surprising since my most popular posts pre-COVID were about travel.
I am skeptical about seeing my traffic recover since my main source of referrals – Pinterest – made so many changes this year. My Pinterest account went from 1.7 million views a month to a little over 200,000. The platform wants people to focus on creating tons of new pins and to create story pins that are like short videos, both things I don’t have the time or inclination to do. Has anyone been enjoying the new Pinterest formatting? I haven’t, but I may be a little biased.
My all-time most popular posts remained largely the same this year, they were just read less. For example, my post about going out to eat in Germany was read 16,000 times in 2019 but just 6,000 times in 2020.
My most read post from this year was, “How Am I Supposed to Get Better When It Seems Like I’m Always Sick?” It was a painful post to write; it was hard to acknowledge how severely chronic illness has affected my life. It was also painful to learn that so many other chronically ill people felt the exact same way.
“Feeling physically broken for so long puts a weighty burden on a person… I don’t have the words to describe how difficult these past few years have been. And I don’t have a plan for getting better. All the plans I have carefully made have fallen short, and I haven’t the strength to come up with the next one. I’m just going to do my best to hold steady for now.”
I only had one sponsored post this year, and it actually fell through at the last minute. I was still paid for it, but I wasn’t allowed to publish it. Overall it was a rather strange experience. I did have my Google Ads income (which is not much, as you might imagine from the scarcity of ads on this website). It wasn’t much as far as blog generated income goes, but I’m thankful to have earned anything.
Freelance work.
The website Lupus.net launched in February 2020 and I was so happy to be part of it! It was a great opportunity for me and I’ve enjoyed contributing to their lupus community. I’ve written 18 posts for them this year (you can read the ones that have been published here). I’ve also worked regularly as a moderator; I get to connect with others who have lupus about the ups and downs of the disease and help them find information.
In my 2019 digest, I wrote about my disappointment in only getting assigned six articles throughout the year by my previous freelance employer. This new job is a much better fit and exactly what I needed. It has, of course, taken some attention away from this blog. But it’s provided important income and it helped me find the motivation to write this year when things in my life were so hard that I was tempted to give it up.
I wrote this on my Instagram when I accepted the job:
“I can’t help but compare 24-year-old me that was physically able (and excited) to do laboratory work to nearly 30-year-old me who lives with lupus and finds fulfillment by writing about it. I’m paving a new path. I’m working when I can, however much I can, about a subject I’m passionate about. But I’m only here because lupus put me here. And while I’m grateful to have found community and freelance work, I still wonder what my life would be without lupus.”
2020 travel highlights.
I don’t have to stick to highlights this year, because we only took four road trips. We didn’t have any pre-pandemic trips in 2020, but at least we didn’t have anything on the books that had to be canceled.
Early on we stayed home quite strictly. We only went for walks outside on wide paths where there were few people – and that still made me nervous. We didn’t understand a lot about the virus yet, plus there were plenty of restrictions, so we spent a lot of time in our own backyard.
In June, we rented a private home on Lake Sinclair in Georgia. We were rather desperate for a safe way to get out of our house and make some use out of the unpaid leave required by my husband’s company. I was nervous about all the reports that had come out on how COVID-19 particles could linger in the air for hours, so I asked my husband to air out the property before we all went inside.
We spent a lovely five days swimming on the lake, soaking in the hot tub, grilling out, and watching the sunset. It was exactly what we needed.
Staying right on the water is ideal for me, as someone with a young child and a chronic illness, because we can just come and go without having to do a ton of prep or load up the car. There’s also no stress about how long you stay out – if you can only do 10 minutes it’s no big deal because the house is right there.
We had such a great time staying on the lake that we took another vacation to Lake Hartwell, South Carolina, in August. This time I was slightly less nervous, since we were only going two hours away, and at this point we knew that the most important COVID safety measure was to avoid prolonged indoor interaction with others.
The home we stayed at had a floating dock, deep water to swim in, and a little beach right around the corner – it was a perfect escape.
In October, we took a mini fall color trip. We drove up the Blue Ridge Parkway and through the Shenandoah National Park. We took a very similar trip last year, but it felt much different this time around since we avoided doing anything inside and stayed at private Airbnb properties instead of hotels.
On the way home, we visited part of the High Bridge Trail in Farmville, VA. It’s exactly what it sounds like – a very high bridge going over a river, and was a neat experience. It’s a rail trail (a former railroad) so it was flat and wide – exactly what we needed for social distancing.
Our last trip of the year was a short anniversary trip to a cabin in Pigeon Forge, Tennessee. We debated taking this trip because COVID cases were out of control in December, but in the end, decided to do it as long as we could stay isolated. We drove straight there, only stopping for drive-through food and gas, and tucked ourselves away in the cabin for two nights before coming back. I was disappointed that we didn’t get to see Christmas light displays (aside from one especially terrible drive-through light show), but there will be another time for it. Having a child-free getaway was a huge blessing and we don’t take that lightly.
These small trips carried us through 2020 while still keeping us isolated and safe. We were fortunate to be able to get away as much as we did, and were also lucky to have great weather for almost all of the days we spent out and about.
My health in 2020.
This has not been a good year for my health. I have suffered from many setbacks, but thankfully I did not experience any restrictions in my medical care due to the pandemic as many others have. In addition to my personal setbacks, I also faced a lot of challenges in parenting my son that affected my health.
In January of 2020, my 1.5-year-old had a bad teething episode, stopped sleeping in his crib, and also stopped napping consistently. It’s been a year and he still sleeps on the floor more often than in his bed. But when he dropped his nap it really impacted my mental state and capability to handle things. I didn’t realize how much I needed the peaceful afternoon rest that came with his napping, or how much harder it would be to deal with a fussy child who had a long day with no nap. I still have not figured out how to cope well with the lack of a napping schedule.
Toddler Meena began speech therapy in March, starting out with virtual sessions and eventually switching to in-person. Taking him to speech therapy and trying to do the homework throughout the week was much harder than I expected. His therapist noticed some things that prompted us to start occupational therapy, which was also once a week, difficult, and came with a lot of homework.
I want to do everything I can to help my child’s development, but taking him to therapy twice a week has been hard on my body. On the days I take him to therapy I can’t do much else because it’s a very physically difficult chore for me. It’s hard not to let the guilty feelings take over about how poorly my health is and how it affects my family.
Photo by Leslie mason Photography.
While I’ve been trying to overcome parenting hurdles, I’ve also been dealing with one health issue after another. They kept happening back to back, hardly giving me a consecutive week or two throughout the year to just be “normally sick”.
January-March: I started the year with the worst upper respiratory infection of my life. It lingered for six weeks and caused what seems to be permanent tinnitus. There’s no way to know if it was COVID, it could have just been a really bad infection, although no one in my circle got sick from it.
February-April: I tried Savella, which is a (very expensive) medication for depression but is also used to treat chronic pain. I suffered from every single side effect listed on the pamphlet that came with it. Sweating was the worst side effect and I quit after about two months. Then I had to go through withdrawals. I don’t think it did anything for my chronic pain.
March-April: I attempted to stop Lyrica, a nerve pain medication, for several reasons. I went through unbelievable withdrawals until I gave up and switched to gabapentin instead, which is a very similar medication.
March-May: I had the genius idea to try a Nexplanon implant even though I’ve only ever had bad experiences with the pill-based forms of birth control. Not only did I bleed for weeks, but I had possibly the worst lupus flare-up ever since I started medication. I got the implant a week before things shut down, and suffered for seven weeks before getting it removed. It was my first pandemic trip to the doctor (I’ve written a lot about my doctors’ appointments during COVID).
Spending months going through issues with Savella, Lyrica, and Nexplanon was frustrating – especially because I made the decision to change things up. But these experiences are really just the cost of suffering from severe chronic pain. I was miserable and wanted to relieve my suffering. It was my choice to start and stop these meds, but it was a choice I made out of desperation from chronic pain, fatigue, and illness. Trial and error is a big part of life as a chronically ill person. Unfortunately, none of those medications helped my situation.
June-August: The Nexplanon disaster set off a lupus flare that seemed like it would never end. I called my rheumatologist’s office in late May to tell them that my hands hurt so much I couldn’t really use them. All day long I would sit on the couch while my hands throbbed in pain. How was I going to take care of my toddler? Before I knew it, I had been scheduled for three loading doses of Benlysta, a biologic medication used to treat lupus, over the next month.
The infusions weren’t all that bad, although I was stressed about receiving them during a pandemic. But they were time-consuming and left me feeling pretty exhausted for a day or two afterward. After my third loading dose on July 2nd, I had a depressive episode. I was concerned but wanted to see if it was really an issue. I had my first regular infusion on July 30th and shortly after I began to experience the worst depression of my life.
The depression was accompanied by suicidal ideation, and it was a very scary time. This is a known, but uncommon, side effect of Benlysta. I didn’t have any more infusions after that. I could have tried taking an anti-depressant, but I didn’t want to go through the trial and error of finding one that would work (I’ve had bad experiences in the past when I’ve tried using them for chronic pain) and I wanted the depression to stop as soon as possible. Thankfully it resolved within a few weeks after my last infusion.
My toddler and I also had a terrible encounter with the stomach flu around this time. I think the Benlysta made me more susceptible, but I’ve never had the stomach flu before so maybe it just really is that bad.
August – Current: I woke up one day, at the end of August, with a terribly swollen right eye. It was puffy, watery, painfully itchy, gritty, and it caused my vision to be blurry. This was the beginning of a long journey of visiting eye doctors. I’ve put hundreds of drops into my eyes over the past several months.
It seems that I have Thygesons disease, which causes inflammation in the cornea. But it’s only in my right eye. It caused dozens of inflammatory lesions that didn’t respond to months of treatments with strong steroid eye drops. We switched to immunosuppressant eye drops (Restasis), which take eight weeks or more to really start working.
For the first two months or so, my vision in my right eye was so poor (20/100 even with correction) that I didn’t feel comfortable driving. So my husband would take me to the doctor and drive Toddler Meena and me to appointments, and then work in the car. It was frustrating to not be able to drive, especially with so many appointments to go to.
I wore a patch over my right eye for weeks while I tried to let it rest and heal, but it didn’t really help and just drove me a bit mad. I also lost a lot of working time due to my blurry vision preventing me from being able to see my computer screen well. The whole thing made me feel discouraged, especially as it dragged on and on, and that demotivated me in all areas of my life.
Then, in November, I had to stop taking my oral immunosuppressant (Imuran) because we found out my blood levels were too high. Shortly after I stopped taking it I developed more inflammatory eye issues, including corneal erosions and inflammatory infiltrates (in addition to the lesions). I was just able to start my Imuran again this week, at a lower dose, but the eye issue is ongoing – I’m typing this using a massive font to help combat the blurriness of the text.
September – Current: Pregnancy! I found out in October that there will be another little Meena arriving in June 2021. Much like my first pregnancy, this one was unexpected due to my health issues.
Of course, early pregnancy is often pretty miserable. I had a ton of nausea – it was worse than my first pregnancy – and it’s continued past the first trimester. I wasn’t able to eat much from week six to 12, and so I felt quite weak and wasn’t able to do much physically. I experienced terrible headaches, possibly some migraines, around 2-3 days a week that left me stuck in bed for most of the day. I’ve never had headaches like this before.
Lying around so much made my neck and shoulder pain even worse. I also developed restless legs almost right away, which surprised and upset me. I didn’t have them until the third trimester last time.
I had to change many of my medications after seeing my OB, which was rough. And then they changed again after I saw a specialist at Duke and a maternal-fetal medicine doctor. This pregnancy has made the end of my year pretty rough health-wise, but I can feel the baby move now which is good.
Oh, and I was diagnosed with rosacea in the late summer/fall, after developing lots of bumps on my formally smooth malar rash. It isn’t necessarily a big issue, aside from the fact that it’s embarrassing and frustrating to have my face looking bright red and bumpy most of the time.
What a year. It was full of not so good experiences. But it’s important to acknowledge, process, and have it recorded so that I don’t forget it all happened.
There were positives in my health journey, however. I started seeing a new rheumatologist in January 2020 that has been amazing and is taking care of me quite well. She is the one who referred me to the specialist at Duke who works with lupus and pregnancy. That doctor is also fantastic, and I’ve learned a lot of valuable information from my first appointment with her. I’m looking forward to learning more as I continue to see her.
I was able to try Botox injections this year for my chronic neck pain. This was a huge win – and not one that happens all that often. It’s quite difficult to get them approved, but I’ve got yet another really good doctor to thank for that.
Overall, I still feel the way that I did in March: how am I supposed to get better when I’m always sick? It’s frustrating that another year has gone by without improvement, and with some decline. It was an unprecedented year as far as difficulty. I wasn’t able to do everything I needed to do. But I am thankful for the things my body did accomplish.
Personal highlights.
It has actually been a pretty good year for growth in my personal life, all things considered. We were able to put up a fence in our backyard pretty soon after the shutdown and prioritize spending time outdoors. It was something we wanted to do anyway, but it was accelerated when the local parks closed.
My husband started working from home in March and is still at home. I’m very grateful that he was able to stay home, thanks to my high-risk status, even after others returned to the office. We were also in a good position for him to have a home office and – thank goodness – Toddler Meena has totally accepted that Dad is unavailable when he shuts the door to the office.
He may never get another chance to work from home again, and having him here to change dirty diapers at the height of my pregnancy nausea has been a HUGE blessing. Even though he had to take some unpaid leave due to budget cuts early on the pandemic, it was nice for him to have that extra time off. We are very fortunate that we could afford it. Later in the year, he received a promotion, which is surely a rarity when so many businesses are struggling.
In May, Toddler Meena turned two! And I turned 30. We didn’t get to have a big party, but Toddler Meena didn’t know the difference. Our photographer was able to take socially distanced photos at a nearby park.
Photo by Leslie Mason Photography.
Like I mentioned earlier, I got a new and better freelance job this year. I’ve had some neat opportunities through it, such as getting to participate in a focus group, attend their annual conference (virtual this year), and meet some great people.
I joined a virtual bible study through my church and made new mom friends. It’s great to be able to meet with them online because I wouldn’t be able to drive at night to attend in non-COVID times anyway. I’m glad that we have the technology so that we can still meet while staying safe in our homes.
And of course, we’re having a second baby! It’s not an easy process – far from it. But we’re doing it and we’ve got great support. Thanks to my specialist, I was able to join the Maternal Autoimmune Disease Research Alliance (MADRA) Registry, so I can help provide more information about women with lupus and pregnancy.
Looking forward.
Honestly, I’m not expecting the next year to be amazing. With the way things are going right now in the USA, we are going to spending a lot more time at home. We will likely have even fewer road trips, due to my pregnancy and then having a newborn. But good things did come out of 2020, and I expect that good things will come out of 2021 as well.
I know what you mean about losing blog traffic this year. Mine tanked and I just don't have the energy to be constantly fighting to get people back. Blogging is a different game than it was when I started back in 2011!
It is so much work to get it to increase, unless something goes viral. Sorry to hear that yours went down too.
I enjoyed your real yet hopeful reflection. I'm at a whole other side of life (retirement and grandma good), but I still can connect to much you have gone through this past year. Here's hopes to more family travels, a kind pregnancy with the arrival of healthy baby, and continued personal growth. Happy New Year.
Thank you, Katie – I really appreciate it!