Having kicked off the new year with a fresh health crisis (is there any other way to do it?), here I am with my better-late-than-never 2021 digest. Looking back over the past year can be bittersweet when you live with chronic illnesses. This year was even tougher as I struggled emotionally and physically with what my children went through medically. However, it helps me remember what I’ve overcome so far as I face a new year.
I spent much of 2021 navigating things that I’ve never seen or done before. I had a second pregnancy while parenting a two-year-old, received an autism diagnosis for my oldest, and had a baby with a rare disease. I was also diagnosed with two new chronic illnesses, although they are all starting to blend together at this point.
I carried loads I wasn’t expecting to carry and it was hard, but I do think it revealed strength that I didn’t know I had. I’m trying to balance my gratitude for things like my thriving kids with many hard moments from the past year. In this post, I’m going to share highlights from my blog, freelance work, travel (or lack thereof), being a mom to medically complex kids, and, as always, my health journey.
2021 Blog highlights.
In my 2020 digest, I discussed how my traffic plummeted when COVID-19 hit, and then dipped further as Pinterest (my biggest source of traffic) made changes to its platform. Unfortunately, my traffic has continued to decline throughout this year, though it was a much smaller decrease.
My most read blog post remained the same: How the German Restaurant Experience Is Different Compared to the US.
It was followed by:
10 Things I Didn’t Realize Would Happen After I Was Diagnosed with Lupus.
A Day in the Life with Lupus.
Our Massive 10 Day Curaçao Itinerary.
My most popular post from this year was: Please Stop Telling Me to Take an Antidepressant for My Autoimmune Disease. That made me both happy and sad. While I’m happy to be able to relate with others and feel reassured that my anger is legitimate when it comes to this issue, I’m also sad that so many people are being told to treat pain with antidepressants when that’s not necessarily the best solution for their situation.
This year I wrote six articles. I managed to write an article each month for the first five months of 2021, but then I had my baby and a slew of unexpected difficulties. I got back to things in November, when I shared a massive (4,500 words) blog post about my third trimester.
Rather than being disappointed about not writing more posts, I’ve decided to focus on their quality. Even though there were only six posts, I wrote 17,200 words for my blog. Of course, it was pregnancy heavy, with 64% coming from my pregnancy posts (11,000 words).
These are all my 2021 posts (excluding my previous year’s digest):
My First Trimester.
My Second Trimester.
My Third Trimester.
Please Stop Telling Me to Take an Antidepressant for My Autoimmune Disease.
My Pain Needs Privacy.
Funny enough, the last two were both inspired by appointments I had because of my pregnancy. So everything I wrote in 2021 was tied into my pregnancy. It’s fair to say that my pregnancy dominated the first half of the year and my kids dominated the second half of the year, though my chronic illnesses were vying for top place in the battle all year.
Freelance work.
I enjoyed my second year of working for lupus.net and I wrote 22 freelance posts for them this year – I’m very proud of that. I also joined another site owned by the same company, chronicdryeye.net, late in the year and have written one post so far for them.
In contrast to my long articles for my blog (rarely under 1,500 and often up to 5,000 words), I’ve worked hard to keep my word count under 600 in my freelance articles (the goal is around 500 words). It’s good for me to learn to write articles that are focused and succinct, but I also appreciate the freedom I have to write long-form on my blog.
I have included freelance articles in this digest as they are relevant. My personal life and health inspires most of my freelance work; many of those articles cover issues that I went through this year. While I love writing for these websites, I do struggle with feeling like I’m taking away some content from this blog. But, knowing that I will get paid for my time does give me that kick in the butt that I need to finally finish articles that would otherwise become dusty drafts.
I also love that these pieces go out to a huge and supportive community, and, quite frankly, I do need the paycheck. Nonetheless, I do hope to find more balance between paid work and this blog (which does earn some money) in 2022.
I worked on another freelance project this year that takes articles about chronic illness and turns them into audio content for its users. It was a little weird to have my words being read by someone else, and I wasn’t enthused about the work for several reasons. I only completed one round of work with that company and I don’t expect to do another.
Travel highlights in 2021.
My first travel experiences this year were for medical reasons, because of course they were. I took a day trip to Duke University in January, an overnight trip in February, and then another day trip in March. I discussed these trips in more detail in my posts about my second and third trimester, but they ended up being largely a waste of my time.
However, during the overnight trip, we got to stay in a hotel for the first time since COVID-19 started. It was an interesting experience; we got to break a seal on the hotel room to go inside and, since we didn’t want to go out to eat, I got the luxury of ordering room service.
We took two lake trips in 2020 that were awesome, and I was craving another lake trip in 2021. It was tricky, though, because my husband had already used up all his vacation time as “paternity leave”. (Don’t get me started on that frustrating topic.) Additionally, I wasn’t cleared for swimming until days before our trip – at almost three months postpartum – due to lingering wounds from birth. I was so anxious that the summer would pass without a good lake trip, but we managed it!
We spent a long weekend at Lake Hartwell, GA and had the best time! We took our 3-year-old swimming, kayaking, and floating. I got to spend hours out in the water by myself and my husband got to spend a good bit of time relaxing inside with a nice big TV (aka, we both got to do exactly what we like to do the most, haha).
One of our family members was able to come and watch our baby (who spent zero time outside in the heat/with the mosquitos) so that we could go out to the lake together with our older son. It was tough to schedule and accomplish, but I’m so grateful we did it!
I look back so fondly on that trip and know I’ll want to enjoy a lake vacation every year! Undoubtedly, I want to travel further and experience more, but I will enjoy the lake trips until it’s safe for us to travel again.
We got to enjoy a lot of other fun things outside. They weren’t trips, but we were able to get outside – with good weather – often, and it carried us through. We got to see a neat outdoor art installation along the rail trail in our city, saw my favorite band at an outdoor venue, and had a fun farm experience in October where my oldest got to enjoy some very cool slides.
I also had a lovely weekend of adventure with a friend who came to visit – also primarily doing things outside. When people show up for me like that it makes me feel so loved and validated, which is always hard to accomplish as a chronically ill person. While our life and travels were quite restricted overall, we still had awesome escapades in 2021 and we’re very grateful for that.
My health journey this year + being a mom to medically complex kids.
My health and my kids’ health have been remarkably intertwined this year. I could write an extensive essay on the topic, but I’ll try to stick to the highlights.
In January 2021 we had our anatomy scan, where we learned we were having another little boy. Not long after that, I learned that I wasn’t metabolizing my immunosuppressant normally, which is why it was harming my liver and also not helping me very much. I struggled greatly in my second trimester because I had to reduce the dosage of my medication and my symptoms started to flare out of control.
I went to Duke University three times in 2021 to see specialists, but unfortunately, these visits were not worth my time. I saw an eye doctor that was not helpful, and I saw a lupus specialist twice. While I’m grateful that she caught the issue with my immunosuppressant, she lowered the dose without adding anything else to my regimen. She flat out refused to consider anything other than OTC pain meds. I felt very dismissed by her at my last visit. I wrote the following about the experience:
“My flare up of joint pain began in February when I was 22 weeks along. It manifested the way it always does – as increasing joint pain and tenderness in my hands, fingers, and elbows…
I had emailed the rheumatologist from Duke right away when the joint pain appeared and was told to take Tylenol and use heat or ice as needed…
So I brought it up again in person at my third trimester visit, paired with my concerns over my eye inflammation, and was pretty much told to go home and suffer because she felt it was only a fibromyalgia flare. There’s more to the story, but, while I certainly think there is a clearer autoimmune link to my symptoms, her lack of compassion is what really got to me
I explained to her that I was unable to use my hands for important tasks – like opening a pill bottle or putting my son in his car seat. It had been eight weeks since the pain began and it was only getting worse. But the doctor referenced my “good” labs as a reason to not prescribe disease modifying drugs and didn’t seem interested in my serious quality of life issues, which made me feel abandoned.”
My Second Trimester.
I felt shockingly neglected. My pain worsened with each week and I was terrified about how I’d take care of myself, my two-year-old, and – quite soon – my baby. I went to my maternal-fetal doctor in a tailspin of despair about my inflammation and pain. Thankfully, he agreed with my concerns and was willing to advocate for my treatment; he called my rheumatologist after my appointment and she was willing to take action.
She prescribed Cimzia, a biologic that’s often used during pregnancy, and it was my lifeline. I got a sample at 32 weeks and my insurance approved my prescription within a week (this was lightning fast and a huge blessing). My symptoms improved drastically despite only having five weeks between starting my injections and delivering my baby. It felt like I had been rescued.
I learned that I had Sjogren’s syndrome thanks to all the extra testing during my pregnancy, which explained why I was having issues with dryness and inflammation in my eyes and mouth. Throughout 2021, this diagnosis made more and more sense and helped me understand what was behind a lot of my pain and illness.
I also went through all of the pregnancy struggles you can imagine: nausea, ligament pain, pressure, lightning sensations, restless legs, shortness of breath, cramping, swelling, waddling around with my 90th percentile baby, and pelvic joint dysfunction, which was debilitating and I would not wish it on anyone! It even affected my ability to give birth and caused issues postpartum.
But, as if my health struggles weren’t enough to take on, my baby started showing signs of distress in my third trimester. So much so that I was hospitalized at 36 weeks (on my 31st birthday, by the way), given steroid shots, and then delivered him a week later at 37+1.
We were shocked to learn after his birth that he has a rare disease called Caffey disease. The doctor noticed problems with his legs about an hour after he was born. By the time he was eight hours old, we had a probable diagnosis.
Caffey disease causes some babies and young children to develop abnormal bone growths. His situation was even more rare, however; he experienced this in-utero and was born with massive bone growths on both tibias as well as a smaller growth on his clavicle.
Typically, kids don’t develop growths until around two months of age and they are more frequently on the jaw, skull, or ribs. Little is known about this disease and we had no idea how it would impact our baby’s development.
What I did know at the time is that my baby was in pain from the extra bone. It made diaper changes excruciating. We were told to give Tylenol liberally. Before he was two weeks old he’d already had several sets of x-rays, seen a geneticist, and had a blood draw to do genetic testing.
We also received my older son’s autism diagnosis around this time. You can see how all of this stress compounded my health issues. Between taking myself and my kids to appointments this year it’s just been a revolving door of doctors.
We later learned that the rare disease came from my husband and that our older son has it as well. I plan to share more details about our Caffey disease journey on World Rare Disease Day, but I will say that he has improved greatly. The bone seems to be diminishing, he’s not in a lot of pain anymore, and he’s even hitting milestones ahead of schedule. We’re so grateful for how he’s thriving.
The complications leading up to birth and then the whirlwind of appointments afterward made the months of May and June feel like an exhausted blur. It was a tough adjustment and I had a rough recovery. My pelvic joint dysfunction didn’t resolve immediately and my body didn’t heal correctly on its own. In fact, I had to go in twice to have my wounds cauterized (this was done via silver nitrate cauterization internally and externally and it was VERY painful).
Switching gears to my older son.
When our baby was about two weeks old, we received an autism diagnosis for our 3-year-old. There were so many emotions. It explained a lot, but it also meant we had a lot of work to do in order to help him.
But that wasn’t all that was going on with him. At three weeks postpartum, I found myself (gently) sitting in an endocrinologist’s office to ask why my son was drinking excessive amounts of water and why he wasn’t growing. The water turned out to be a fixable issue – huge adenoids were causing him to breathe almost exclusively through his mouth, making it dry. But the cause behind his failure to thrive was less clear. Between the orders from the endocrinologist, geneticist, and developmental pediatrician, my brave 3-year-old had something like 16 tubes of blood drawn. And a bone growth x-ray.
As I mentioned previously, we also learned that he has Caffey disease around this time. He did not and does not have any noticeable manifestations, but it does add another layer of complexity.
After the appointments and testing for both our kids slowed down, we turned our focus to providing helpful therapies for our son. At this point, he was having full-blown autistic meltdowns. Part of the problem was his difficulty with communication, so we resumed weekly speech therapy. He spent a lot of time with family who worked very hard on his speech therapy homework and we saw incredible progress in his speech over the summer.
We advocated to get early intervention services through the local school system and had a hard time since they were backed up and overrun due to COVID and staffing issues. He only qualified for a language learning lab as they did not recognize his need for occupational therapy or autism services.
He was already receiving OT at home, so we reached out to our insurance for help with therapy for autism. Unfortunately, our insurance did not offer any coverage, and trying to get it through the state would likely take years. The stress of having a baby in the house made our 3-year-old struggle greatly with self-regulation and, for a while, it felt like we’d never have the tools to help him.
My husband requested coverage through our insurance plan and provided details from the doctors about why we needed it. To our amazement, they approved it! These services are very expensive, generally upwards of $20,000 a year, and we are extremely grateful to have access to them in 2022.
(I also want to mention that this type of therapy, called ABA, is also controversial. We have chosen a very gentle program that only works to help recognize triggers, improve communication, and limit self-harm – there will be no drilling and he will be allowed to stim as long as he isn’t hurting himself or other people.)
While getting coverage was a HUGE win, we still had nearly half a year to go before we’d be able to access it. Being a chronically ill, and often physically disabled, mom suddenly became a much bigger problem than I anticipated. I have two very strong (and strong-willed) boys. I was incapable of watching both boys for an entire day by myself – because of my illness and because my oldest would be completely out of control at times.
When my husband went back to work, I would sometimes have to lock myself in a room to feed my baby because my 3-year-old was having autistic meltdowns leading to physical harm. It broke my heart that I was unable to help him the way he needed due to my physical limitations and lack of therapists to advise me on how to handle it.
It was an untenable situation. I needed someone to help me avoid these situations because it was upsetting and unsafe. We worked out a system where every day that my 3-year-old was home my husband was also working from home in case we found ourselves in a physically unsafe situation.
On the other days, he was either with family for a whole day, a half-day, or someone would stop by in the afternoon so that I wasn’t alone during the most difficult time of the day. I needed so much more from my support system than I expected.
Trying to juggle my illnesses while navigating this new territory was tough. But, we did see progress and we got him into a great preschool in the fall that has helped him and taken a bit of the load off of me and my support system.
IBS diagnosis and other health struggles.
During my repeated postpartum trips to the OB’s office, I kept bringing up my unexplained abdominal pain. My doctor ordered an ultrasound and found nothing. I was surprised because I have PCOS and expected that the pain was from an ovarian cyst.
Based on my symptoms, she suggested I go see a gastroenterologist (GI doctor). Honestly, I didn’t really take her seriously and I was completely exasperated with having to ask for childcare help to go see doctors all the time (at least, it felt like all the time).
In October, I finally went to see a GI doctor after I developed chronic diarrhea. I still expected it to be a waste of time. But an x-ray showed that I was on my way to developing a bowel obstruction. Apparently, the diarrhea is just what was making it around the partial blockage, so I was diagnosed with IBS-C after running labs to rule out other conditions. IBS stands for irritable bowel syndrome and the –C is for constipation.
I was instructed to get a bottle of magnesium citrate, which is a saline laxative, to clear things out right away and prevent a complete blockage. Then I added fiber to my diet and reduced my dosage of acid reflux medication since it can cause the stomach to empty more slowly.
I was a bit beside myself to have yet another health issue, especially one that’s harder to talk about with others. In fact, I’ve been rather angry and pessimistic about it all. I’ve spent hours upon hours in the bathroom over the last several months and I did not realize just how taxing and uncomfortable GI issues can be.
“Even though my joint pain can be extreme, hitting up to a 9/10 on the pain scale at times, talking about it doesn’t make me feel awkward. The cramps and spasms that send me running to the bathroom, on the other hand, aren’t as easy to broach in conversation. And then there’s what happens in the bathroom.
I struggle to find the appropriate boundaries when I talk about the latest way my body seems to be malfunctioning. Can I say diarrhea? Gas? What about bowel function?”
IBS and Talking About the Uncomfortable
Additionally, spending so much time in the bathroom has not helped with my chronic neck pain. Between the hunching, the loss of time that could be used for exercise or physical therapy, and the exhaustion of IBS episodes, my neck pain has escalated.
Thankfully, I’ve continued to receive Botox throughout 2021 and I can tell it’s working. It has a bit of curve to the pain relief, however. It takes about 4-6 weeks to kick in and I have to go 12-14 weeks in between injections. I’m grateful to have access to Botox, as well as muscle relaxers, but I am frustrated that I haven’t been able to exercise and strengthen my body to help with the pain.
Between pregnancy, caring for a newborn, taking care of physically demanding older child, going through autoimmune flare ups, having several acute illnesses, and now caring for an active baby, my good days have been few and far between. I keep wondering how I’ll get better overall when I seem to always feel sick?
Managing autoimmune diseases and sickness.
It’s hard to acknowledge that I now have two autoimmune diseases. Throughout 2021 I have had a lot of issues with dry eye and dry mouth. Towards the end of the year, I found out I am also dealing with gum recession and tooth decay, presumably from Sjögren’s syndrome and its associated dryness.
I’ve been super happy with the biologic that I started in March 2021 and there’s no doubt that it’s more effective than my previous medications. So effective, in fact, that the first cold my 3-year-old brought home from preschool knocked me out for a month. I’m talking can’t get out of bed, short of breath, visit to the urgent care, could barely walk for three weeks – from a COLD.
I was pretty scared about how hard a cold hit me. And, since it’s the first year of preschool, it’s expected that my son will bring home 10-12 colds. I think we’ve had four or five so far, but they all run together. I was sick for Halloween, Thanksgiving, and Christmas. I was frustrated to miss out on so much. Twice I got sick when my kids didn’t even get sick! My baby has a better functioning immune system than I do.
Baby and me at the ortho doctor (where we got good news about his legs).
Because I kept getting so severely sick, I delayed starting additional meds for my autoimmune symptoms. My rheumatologist and I were going to add an immunosuppressant, but I was intimidated by the idea of further suppressing my immune system. My liver enzymes also began to elevate rapidly from August to December, which was another reason to hold off on the medication we’d been considering.
The fall was a blur of sickness. I often had to postpone my biologic due to being ill, which in turn led to autoimmune symptom flare ups. It’s difficult to manage chronic pain plus autoimmune diseases plus viral illnesses. It felt devastating to be sick with colds for so long repetitively. I was burned out from feeling like crap all the time and my husband was pretty burned out from having to pick up the slack.
I also had to push a bunch of medical appointments, which is tough when you’re seeing specialists. The genetic doctor and developmental predication both reschedule for six to nine months out. I just hope we aren’t sick when those appointments finally roll back around. The good news is that we have not, to the best of our knowledge, had anything more serious like the flu, RSV, or COVID-19.
For a while, I felt like my body was falling apart. I didn’t get a period for four months (after they had already started back postpartum), my digestive system was moving so slowly it put me in danger of a blockage, my liver was deteriorating, and my body couldn’t fight off a cold that my 3-year-old recovered from in a few days. It was discouraging. But some things have improved, and I have good doctors that are going to continue to look for solutions.
Other personal updates.
Early in the year, before the vaccines, the pandemic days were long and a little scary. Being immunocompromised and pregnant meant following pretty strict guidelines. We did decide, along with our pediatrician, to send my son to a very small preschool from mid-February to early May 2021.
I felt fortunate to be vaccinated at 28 and 32 weeks of pregnancy. My husband also got vaccinated before baby was born. Furthermore, I felt like I gave birth during a bit of a sweet spot: a lot of people were vaccinated, cases were low, and there were not yet breakthrough cases. I didn’t have to wear a mask at all inside my hospital room and, though we were careful during the newborn period, we didn’t have to worry excessively.
I received a third dose of Moderna in August and I was grateful since cases were picking up and breakthrough variants were arriving. Right when we were ready to take our baby out into the world – bam – cases picked up again and we needed to return to being strict with activities.
In the fall, we went back to only the necessities. We went to doctor’s appointments and therapies, plus my older son went to preschool. We choose a different, more structured one, that exercises great caution towards COVID-19 and he’s benefited from it greatly.
Despite all that we gained this year, I also felt immense loss. I lost the time spent with my oldest as an only child. Quality time with him can be hard to come by these days. I lost time with my husband, especially since our baby had to be held almost constantly for the first few months. I felt like I simply couldn’t give either kid enough of myself. But I also lost time for myself and my work. I suffered a lot with my health and lost time that I wanted to spend thriving with my kids. I also lost my three and a half year old budgie, Dyna.
Additionally, it was an expensive year. We had to buy a family car – that was a doozy. We’ve never bought a car together before; we’ve both owned and kept our cars from when we were in college. It was stressful, but we did it and I’m still trying to learn how to drive an SUV after driving small cars for 15 years.
We also got ripped off for about $700 when we started the autism diagnosis process. We were sent to a place that had hidden fees, told untruths, and would have ripped us off for thousands if we had continued going along with their nonsense. It was all so unnecessary; we went somewhere else that was able to get things fully approved by insurance. It’s not my first bad experience with a deceitful medical practice, but it was bad timing.
Not long after that, we got bills for $600 for specialized lab tests that we thought would be covered. When you have a high deductible plan, it’s hard when things aren’t approved because you’re already spending so much money on healthcare expenses.
I have also found Sjögren’s syndrome to be an expensive disease. I need all sorts of things to manage it that aren’t covered by insurance, such as preservative-free eye drops, supplements, dry mouth spray, special toothpaste and mouthwash, humidifiers, moisture chamber glasses, eye masks, and more.
Later in the year, I decided to join the Inject With Me initiative on Instagram since I do my Cimzia injections at home. I’ve enjoyed doing it. I don’t have any issues with self-injections, but I understand why people struggle with them and I’m all for normalizing chronic illness and helping others learn how to live with them.
Overall, I had a lot of fun this year learning about my brand new human. Despite being born early term, he’s huge, super chunky, and generally really happy. Having a bigger baby was nice being I didn’t have to worry so much about weight gain like I did with my first son. We celebrated a lot of firsts with him this year, like his first Christmas.
My husband and I also celebrated eight years of marriage in December! We had an outdoor day date at a winery and then got pedicures (yes, it took eight years to convince him to get a pedicure, ha). No big trip for us this year, but we took one night away at a local hotel.
Looking forward.
There’s no doubt that this year was tough. So much so that it felt like our family might crack from the pressure at times. But we learned. We grew in new ways. And we learned to support our children and advocate for them.
I am already far too familiar with advocating for myself. This year I didn’t give up and I went from barely being able to use my hands to having a prescription for a powerful, game-changing biologic medication in just two months. It felt like my body was going off the rails for a while, but we’re investigating things and I think (hope, and pray) that answers are on the way.
My husband and I spent a lot of time making sure our kids were taken care of in the right ways. We got to the bottom of all sorts of medical issues and even got our insurance to add a new therapy to their plan. That doesn’t happen very often. We made it through preschool colds, new diagnoses, and big hurdles together as a family. And we’re only getting started; I expect that 2022 will be full of more medical issues that we have to work our way through and overcome to the best of our ability.
All of this is hard. Being chronically ill, being a mom, being a mom to more than one kid, being a parent of a medically complex kid, being a parent of a baby, being the parent of kids with rare diseases, navigating a pandemic, it is all HARD. And most of it was new land that we were figuring out how to traverse for the first time. So, as difficult as it was to type up this post and work through the emotions and hardships that were prevalent throughout 2021, I do feel empowered that we have made it this far.
2021 Yearly Digest: highlights from my blog, freelance work, travel (or lack thereof), being a mom to medically complex kids, and, as always, my health journey. Click To Tweet
Newborn photos by Leslie Mason Photography.
