It took me a long time to write my 2022 digest and it wasn’t just because so much stuff happened over the last year. It was partially because my family has been taking turns having rough colds for weeks – months, really – and it’s hard to get anything done when we’ve all been so sick.
But it’s also because I always go through my Instagram posts to see if I forgot anything and I just couldn’t stop staring at my gorgeous boys! Someone needs to give me a reason to dress these handsome fellows up more often.
So, aside from my boys being the charming little men they (sometimes) are, what else happened in 2022? Well, I had two surgeries. My body continued to struggle and reveal new health issues, like it’s been doing for the better part of the last decade. My oldest son had a surgery and a very rare disease diagnosis. We became even more obsessed with lake vacations. I enjoyed doing some freelance work and blogging when I was able. Our house kept trying to fall apart on us. My husband and I started marriage counseling and worked hard on our now 9-years-old and counting marriage.
Want more than the cliff notes? Read the sections below for highlights on this blog, my freelance work, chronic illness life, mom life, and other personal updates from 2022.
My Year in Review
2022 Blog highlights.
My most read post throughout 2022 was a A Day in the Life with Lupus (2017) – by a large margin. It really took off on Pinterest and finally beat out the previously most read post, How the German Restaurant Experience Is Different Compared to the US (2016).
It was followed by 10 Things I Didn’t Realize Would Happen After I Was Diagnosed with Lupus (2017). I loved writing that post and I’m (very slowly) working on another 10 things I didn’t realize would happen with lupus post. It’s fascinating how these posts are getting thousands of views despite being several years old.
To my surprise, my most popular post from 2022 was My Baby Has Caffey Disease.
In 2022, I wrote eight articles totaling almost 24,000 words. I include the word count because it boosts my morale to think about the quality, since I’m still coming to terms with the lower quantity of blog posts. One of my posts, “Did you notice?”, was a bit of a different writing style for me and I enjoyed branching out a little.
These are all my 2022 posts (excluding my previous year’s digest):
My 5 Year Lupus Diagnosis Anniversary.
My Baby Has Caffey Disease: Our Story and Rare Disease Awareness.
Celebrating Lupus Awareness Month + a New Lupus Coffee Mug.
Having My Second Baby: A Birth Story.
Did you notice?
Living in burnout.
I lost my mom.
Freelance work.
In my third year working for Health Union, I wrote 21 articles, started doing video content, participated in two advocacy collaborations, and joined an Instagram live event for Lupus Awareness Month.
Advocacy is a massive part of my life with chronic illness and this freelance work bring me great joy. I also love the communities that I’m involved in and getting to know my fellow patient leaders. You can see my content on lupus.net and chronicdryeye.net.
Some highlights from the year include a video talking about spoon theory and getting to interview my sister-in-law for an article about nurses’ experiences with chronically ill patients.
I also started creating things for people with lupus and Sjögren’s. It started with a coffee mug, and I’m expanding the designs and products that are available. I wanted to purchase beautiful lupus products for raising awareness and didn’t find many that fit the bill (quite frankly, there’s a lot of tacky lupus merchandise out there).
I also want purple shirts for my sons and they are really hard to find! Boys wear purple, too. So I’m making the things that I couldn’t find.
See my shop here.
Travel highlights in 2021.
It was another year of low key travel, thanks to finances, vacation time, COVID, and just having two intense little boys. I’m grateful for the vacations we did take.
I was able to take a little weekend away for a writer’s retreat at a little cottage in a vineyard (big thanks to my husband). It was a rejuvenating break from being a parent as well as an invigorating trip to exercise my independence as a chronically ill person – something I rarely get to do.
In June, we took an amazing family vacation to Lake Bowen, a private lake in South Carolina. We stayed in a beautiful Spanish style casa that had the most beautiful patio – we ate all our meals there! It was awesome to spend so much time outside and we were even treated to a boat trip by a very kind neighbor! It was a special time that I look back on fondly.
In July, I was grateful for another kids free weekend to take a girls trip to High Rock Lake in North Carolina. I spent the weekend with my best friend in a lovely home with lots of stairs, floats, warm water, and time spent laughing together. We had an epic experience getting caught in the middle of the lake on a kayak and paddle board during a storm. Thankfully we were safe and had a blast; it felt like a once in a lifetime experience to be surrounded by the water like that.
As July turned into August, we took our first big road trip as a family! We drove from Charlotte to Indiana to visit some of my husband’s extended family. We didn’t have a lot of time, but the time we had with family was special. We also learned a lot from driving that far and made the most of it by taking different routes on the way there and back. The experience has encouraged us to try taking another big road trip this year, if possible.
In August, we had to sneak in one more lake trip! We traveled to Lake Wateree, South Carolina, which was beautiful and only an hour from our home. This was a special trip because we went with my grandma, and my boys got to enjoy extra time with their great grandmother. My husband also got to take my grandma on a special kayaking adventure.
When the leaves started to turn beautiful colors we took a mini version of our annual fall colors trip. Our boys were sick but we still had a great time, even though the day ended at urgent care with our first ear infection experience (which has now turned into a saga).
Lastly, my husband and I stole away for a night to a fancy hotel to celebrate our 9 year wedding anniversary in December! We also ended that trip with another urgent care visit to treat an ear infection. Parent life is no joke!
I loved every travel moment we had in 2022, no matter how big or small, and look forward to the ones we’ll have this year.
My chronically ill world in 2022.
I kicked off the new year with a new health crisis, which just made terribly ironic sense with how things had been going. I thought I had a really bad week-long stomach flu, but I soon learned it was actually gallstones causing my gastrointestinal pain and distress.
Cue an abdominal ultrasound, lab work, ER visit, surgical consult, and an agonizing wait for surgery until I was safely two weeks out from my biologic. I could only eat lean chicken/protein and veggies – too much fat would cause agonizing pain. I lost a lot of weight and struggled to keep my energy levels up due to my issues with food.
My gallbladder removal surgery was on March 8th and though it went well, it was unpleasant. I had a terrible experience in the PICU and my pain wasn’t managed well. A day after the surgery, I had my first ambulance ride as I was having some concerning symptoms. My lung had started to collapse, as I was struggling to take deep breaths with my uncontrolled pain levels (and I hadn’t received education about the importance of deep breathing post-op, which is supposed to happen at discharge).
Thankfully we got the situation under control quickly and I had no long-term issues from the surgery or complications. It was tough not being able to lift my boys for two weeks; we had to get creative. I wrote an article about what I learned from my first surgery as a lupus patient. And I hoped to never need another surgery! Unfortunately that wish didn’t come true.
January 2022 marked five years since my lupus diagnosis, which brought about a lot of emotions and reflections for me. I wrote a detailed post about how my lupus and treatment evolved in each year since my diagnosis as well as a shorter post about my five-year journey for Lupus.net.
I had a hard time accepting the five year milestone, and the fact that I was sick before the diagnosis five years ago. It’s a lot of time to carry so much pain in your body and I’m weary of watching the years go by and fighting for a better quality of life that has yet to come.
I also struggled throughout 2022 with getting really sick from viruses that my boys brought home from preschool. My biologic medication, Cimzia, is working very well to help with my autoimmune symptoms, but it also means that I have a hard time fighting off illnesses. There were a few colds that left me stuck in bed for days. I knew this was a likelihood when I started the biologic, but the experience of being that sick was very hard to go through, a little scary, and made it hard to take care of every day tasks.
After everything I’d been through, in 2022 and the years before, you’d better believe it was time for therapy. It was past time. In March, I found a therapist that was a great fit for me and began meeting with her weekly – or trying to. It was hard to make it work with my kids and the illnesses always coming and going from our lives. But it’s been an incredible year of learning more about myself, making small changes in different places in my life, and working on my marriage (she’s also our marriage counselor). I’m very grateful to have found such a beneficial therapeutic relationship.
In March, I began to have a flurry of migraines. I had my first migraine when I was pregnant with my second child, but they were pretty infrequent until about nine months after his birth. At first, I thought it might be related to lupus, since lupus can have neurological side effects. I had a normal CT scan and decided to see a migraine specialist, even though it meant I’d have to wait until August.
I’ve learned from past experience it’s better to wait and see the best doctor than to rush and see a subpar doctor just because they’re available sooner. I’m glad I waited, despite the suffering from migraines throughout the summer. Even though I waited five months for the appointment, I’ve had an excellent experience with my neurologist and expect to have great treatment for years.
In May, I decided it had been long enough to suffer from pelvic floor issues and I started pelvic floor therapy when my baby was a year old. I’d had issues with pelvic joint dysfunction, muscle strain, imbalances, and leakage since he was born. After my gallbladder surgery, these issues got worse and finally forced me to seek therapy.
Maybe it was because the surgery was abdominal or because I lost strength during my recovery, but whatever the reason I’m glad it finally got me in therapy. I made some great progress – until preschool started and those pesky cold viruses started up again. The prolonged recoveries and the coughing have left me taking one step forward and one step back every since. I’m still in weekly therapy.
In June, I tried to increase my dosage of Zoloft. I was on a very low dose for PPD and it was no longer enough. Unfortunately, this caused a severe dry eye flare-up that made it hard for me to even walk with my eyes open. I decided to stop the Zoloft altogether and I experienced an intense chronic pain spike for about 8 weeks.
I knew I needed another treatment for my depression, but I was at a loss. Every typical treatment option had a drying effect that I couldn’t tolerate. I was frustrated that there were no solutions for someone in my position and each week it felt like things slipped a little further beyond my control.
I pinned my hopes on a Sjogren’s specialist (which was a mistake). In late August, after struggling for weeks, I met with the doctor and went through a thorough Sjogren’s workup. At the end of the visit, I asked him the question that had been on my mind and heart for so long, “What do your patients do to treat their depression when their dryness is uncontrolled?”
He didn’t have answers for me. And I was pretty devastated.
The standard medical system was failing me. It came with huge consequences for my life and mental health. I was living in burnout. My depression continued to hit new lows and I began to feel scared about what might happen if I didn’t find a good treatment. So I took steps to solve my own problem in a nontraditional way; I enrolled in a ketamine treatment program for depression.
It took a while to start ketamine treatments and feel the effects on my depression, but it’s been a highly positive and powerfully introspective experience. It’s also been very expensive and I continue to look for either cheaper access or another solution.
In August, I had a sleep study done because my fatigue had gotten really severe. My rheumatologist was hesitant to change my treatment plan without ruling out other causes for my fatigue. I’m glad she was caution because the sleep study revealed several issues. I had moderate sleep anpea and I wasn’t breathing through my nose while I slept.
So, it was time to take more steps to take care of my health. I’m happy to know what’s wrong and how to fix it, but it’s exhausting to do everything needed for health issues. First I had to wait for a CPAP machine because there was a shortage. Then I had to go to a class to learn about how to use it. Then I spent a week crying and panicking at bedtime because I hate wearing the CPAP mask so much. I had to get a full face mask due to not breathing through my nose. My husband tried to coach me through accepting the CPAP and I tried a few sleep aids like melatonin, but I also had to ask my sleep medicine doctor for a stronger sleep aid. It was rough.
Additionally, I needed to address what was wrong with my nose. So I went to see an ENT who wanted me to try flonase for a month for my swollen nose parts (called turbinates0 and then come back. It didn’t help, plus I was found to have a deviated septum, so I was set up with a sinus CT scan and surgical appointment. I ended up having surgery to fix my septum and turbinates on December 23rd. I struggled with nose pain from the septum repair for longer than anticipated but my breathing is much improved.
So, worth it, but absolutely exhausting. Everything just takes a lot of work, time, and energy. And childcare. Even though this has been a painful year, I am proud of the work I put in to improve my many health issues.
Overall, my lupus has not been as severe in 2022 compared to previous years. I did struggle a lot with dryness in my mouth and eyes, likely from Sjogrens, and I had some joint pain and flare ups. Most of my lupus pain and fatigue occurred after I was a little too physically active (and it doesn’t take much) and meant I had to spend a day or two recovering.
I had some episodes of unexplained weakness and shortness of breath, which landed me in the ER in July. During that visit I was told, “we have no answers other than this just happens to people with autoimmune diseases sometimes.” I wore a heart monitor for a week in October to rule out any potential issues there, and everything looked good.
The most consistent lupus issue I had this year was my facial rash. It didn’t let up the entire year. It’s not a major, life-altering issue, but it is painful and embarrassing. I found a dermatologist that prescribed anti-inflammatory creams that have helped quite a bit.
With all the struggles I had throughout the year, including surgeries, upper respiratory infections, parenting challenges, and fatigue/weakness, I didn’t make much improvement with my chronic neck pain. This is a very limiting issue for me and it leaves me discouraged as I have to constantly experience such severe pain and miss out on things I want to do for myself or with my family.
A positive from this year was getting the opportunity to work with a health coach, even though I was pretty skeptical at first. The coach helped me to start cooking again, eat more protein, and look at physical wellness in a more wholesome, positive, and incremental way. I also lost 22 pounds in 2022 and I’m hoping to keep that trend going.
Working on my mental health, especially through my experience with ketamine, has helped me realize I want to work on my perspective on my past, present, and future. I want to dwell less on my past and learn how to move past some things. I want to find more ways to thrive in the present and practice interacting with the world in a joyful manner. I want to make plans for the future, but not count on a version of my future self to magically solve my problems and be happier.
My parenting journey in 2022.
I started the year with a 7-month-old and 3-year old and ended the year with a 19-month-old and a 4-year-old. I watched remarkable changes happen in both my boys.
In February, I acknowledged our first rare disease day by sharing about how my boys, most specifically my youngest, have Caffey Disease.
In March, we had exome testing, a type of genetic testing, done for our oldest son who had been struggling to put on weight and grow. He was also dealing with several other health issues.
We learned from the exome testing that our older son has a genetic mutation in the USP7 gene. This has also been named Hao-Fountain Syndrome. It’s quite rare; the USP7 foundation estimates that 150 people in the world have been diagnosed with it. It’s likely underdiagnosed and new cases will likely show up as genetic testing becomes more widely available.
Our son’s mutation is unique because it is not a new mutation that happens when the genes form, referred to as de novo. His was inherited from his father, who has a mosaic form of the disease (meaning only some of his cells have the mutation). Nearly all the USP7 cases studied so far have been the de novo type.
Hao-Fountain Syndrome comes with a long list of symptoms and our son has most of them, including low muscle tone, short stature, difficulty gaining weight, developmental delay, speech delay, and autism spectrum disorder.
As with most diagnoses, it’s not something we’re excited to learn about but it’s better to know what is gong on. With his USP7 diagnosis, we also know other things to have him screened for and we’re better equipped to help him. Of course, since it’s so rare there aren’t a lot of supports and we have to educate his doctors.
The story of USP7 is amazing in regards to health advocacy. The USP7 foundation is run by parents of those with the condition. They were able to find each other when Bo Bigelow started a search for other families after his daughter’s diagnosis in 2014. Over the next two years, he was able to find five other families with USP7 diagnoses. The group has grown and now has a private facebook group for the families that has reached 200 members. It’s been a great resource for our family as we received the diagnosis, had questions, and searched for community. There’s nothing like the support of others going through the same thing when you are living, or caregiving, with a rare disease.
What a great example this family has been in furthering rare disease awareness and research. It’s also a reminder for all of us to keep up the great work in patient advocacy! It really does make a difference. In fact, in the fall we learned Duke University is studying speech within USP7 kiddos. Since the disease is so rare, we were quite surprised but also thrilled. We jumped on board to do our part for research because we know it can lead to great things for any condition.
Of course, there was more to our kids’ lives in 2022 than their rare diseases.
Our then three-year-old had his adenoids removed in April. From the nose scope to the surgery, it was unpleasant. But they were 90% obstructive, so they had to go. He could breathe better, eat better, and sleep better afterward. The sleep was especially important because deep sleep is necessary for the body to produce growth hormones and he wasn’t growing much at all. After the surgery he had a large growth spurt!
We also acknowledged our first World Autism Day in April; I shared some of our son’s journey and expressed how much I hope the world can be more accommodating and accepting for him.
Preschool ended in May for our three-year-old and summer began for the boys. I really loved adding in some water play at home (plus all the water fun we had at our lake trips, which I mentioned in the travel section).
I spent a lot of time parenting from my couch, which is totally doable under the right circumstances. I try to minimize it, but it is what it is when you’re a parent with chronic illnesses. I parent from the bed, too. Sometimes with more success and hilarity than others.
In July, our one-year-old caught a nasty virus that turned into croup. Unfortunately, he then developed chronic croup and it is definitely scary and one of the worst sounds I’ve ever heard. It flared up with most colds, and we spent more of our time sick than not after school started back up in September. Most people with young kids did during the unprecedented 2022 cold and flu season.
Both boys started preschool in the fall. The youngest went to a 1s class three half days a week and our oldest ended up going to full-time 4k at a local public elementary school. It’s been awesome, aside from all the germs.
Unfortunately, our youngest also started to deal with chronic ear infections, earwax impaction, and chronic ear fluid in October. After many attempts by different doctors to remove the impacted earwax, we made the decision to have it removed surgically, although we’ve haven’t been well enough yet to do the surgery. His ears have been fully blocked by earwax for two months and counting – I had no idea it could be such a problem. Once the wax is gone, we’ll be able to see if there’s still fluid (we think there is) and he’ll also get ear tubes. Poor kid.
Parenting in 2022 was tough because it took so much out of me. I had to manage school schedules, meet with multiple therapists, take my oldest to specialists, advocate within the school system, take care of sick kids, make last-minute runs to urgent care, and so much more.
I found it very difficult, at times impossible, to take care of myself properly when I have a medically complex child and a toddler with frequent illnesses. There’s no way I could have made it through the year without my support system.
But just look at these awesome kids; they’re worth it. They’re also surprisingly understanding of their mom’s limitations – most of the time.
Other personal updates.
The biggest, and most tragic, event from my personal life this year is that I lost my mom. She was 60 years old and a 10+ year stroke survivor. I wrote a post about my loss to try and express my grief but words can’t convey what it’s been life.
It’s harder and more complicated because I lost my Dad in 2014. And I’m not very capable. And there are many conditions surrounding her life that make the situation harder. So there’s been grief that ebbs and flows and pops up in new ways, but there’s also a lot of other emotions that keep coming into the picture.
“Grief, I’ve learned, is really just love. It’s all the love you want to give, but cannot. All that unspent love gathers up in the corners of your eyes, the lump in your throat, and in that hollow part of your chest. Grief is just love with no place to go.”
Jamie Anderson
Despite the difficult circumstances, the love I had for my mother is still here, unspent, and the loss is immense.
It’s hard to find other 2022 personal updates significant in light of my loss, but I’ll include a few anyway. We tried to repair the foundation of our home, but have only been partially successful. Being a homeowner is expensive and time-consuming. It has its perks, but we seriously considered renting after a particularly difficult season taking care of our house, which was not well taken care of by its previous owners. Ultimately we decided to stay in our current house, in part because we have two outrageously wild boys (that sometimes damage things).
In December, my husband and I celebrated out nine-year marriage anniversary at a fancy hotel. This year we only took one night away, but we went a little further than last year. Baby steps.
Looking forward.
It was a very painful year, from the physical pain of surgeries to the emotional pain from losing my mom and more. The pain did get to me. In my digest from last year I wrote:
“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 think this year we did crack. In a way, I think we needed to break in order to learn and start a process of renewing ourselves, our minds, and our family. We couldn’t change many of the things that happened in our lives. What mattered more was how we handled the breaking and the rebuilding. We’re discovering why we are the way we are and making changes where we need to. It’s rather brutal, personal, back-breaking work, but it’s how we become better people, spouses, and parents.
I’ve chosen a word for the new year. My word is “new” and it’s based off of this verse:
“Behold, I am doing a new thing; now it springs forth, do you not perceive it? I will make a way in the wilderness and rivers in the desert.”
Isaiah 43:19
I’m confident that my vision of having new, good things spring up into my life will help me this year. I’m going to work towards bringing new things into my life with passion and plans. I am expectant that there will be ways through the wilderness and rivers in the desert no matter what I’m navigating, from my work to my parenting to my chronic illnesses and everything in between. I look forward to growing, learning, and changing.
Thanks for reading about my eventful year!
Looking for something to read next? Check out the 2021 yearly digest.
Featured photo by Leslie Mason Photography.
