2023 Yearly Digest.

I’m grateful to be welcoming in the new year by cataloging the important parts from the previous year. It helps me have the right mindset going forward. In preparing to write this 2023 recap, I enjoyed going over details of events that I had already forgotten about.

I am so grateful that I hold myself to doing this annual digest, even though it’s more for me than the readers of this blog, because it brings out incredible reflections on the past year, boosts my self-esteem by measuring all that I’ve accomplished, and helps me put my best foot forward as I think about the year ahead of me. It’s never easy to put together the biggest events from the entire year.

Nonetheless, I treasure pulling all my 2023 moments together – big and small. I’ll start by talking about my blog, which you may have noticed did not exactly flourish in 2023. I’ll also talk about my freelance work, my varied travel highlights (that weren’t quite what I expected), my ongoing and new chronic illnesses issues, a special segment on mental health, parenting my young children, and other things that made up my 2023. So, let’s talk about the past year and focus on moving forward with fierce motivation.

My Year in Review

2023 Blog Highlights

You might be wondering why I have a highlight section for my blog when I only wrote one article last year (aside from my 2022 digest). Not only was it just one article, but it was about a highly specific topic that was also, sadly, kind of a bummer: Having a Lip Biopsy for Sjögren’s? My Detailed Experience.

Less than 200 people read that blog post in 2023, but I hope that it will help people looking for answers in the future. That’s one of the largest goals of this blog: providing value to others. This blog began as a place to document my travels and expat experiences, but it’s expanded to include my lived experiences with autoimmune diseases and chronic pain. Rather unexpectedly, it’s also been a place for me to share about parenting and advocating for children with rare diseases and extra needs.

I can’t promise that this blog will flourish again this year, or at all, but I hope that it will eventually come back to life as a valuable resource for all sorts of information. As much as I love it, blogging is a lot of work, and my physical and mental health kept me from being able to follow through with everything I wanted to write this past year.

I enjoyed reviewing my most read posts of 2023 – still at the top was How the German Restaurant Experience Is Different Compared to the US (2016) with 5K views, closely followed by A Day in the Life with Lupus (2017).

Those two posts were also the most popular in the previous year, however, they were followed by the third most popular: Eight Things I Loved About Barbados (And Four Things I Didn’t Like) (2019). I’m glad to see this article rise in the ranks since it indicates to me that travel is picking up again! A girl can hope.

Freelance Work

Ah, attempting freelance work in 2023 was no small feat as a chronically ill mom facing severe mental health struggles and physical burdens. While I’m happy to say that I remained loyal to Health Union through a merger that produced the Social Health Network, I’m also humbled to acknowledge I had to take a few months away from freelance work in 2023.

I continued in my fourth year for Lupus.net, writing eight articles, sharing two videos, creating a Day in Life series for their Instagram, and contributing to a group video to raise lupus awareness. My favorite freelance pieces for lupus from the last year include 4 Reflections From Years of Living in Pain and It Can Get Dark Inside a Flare.

I also contributed three articles to ChronicDryEye.net, as well as took part in a group piece, before the site was suddenly decommissioned in the summer. The website is still online with community members able to access and interact with existing content, but all the patient leader contracts were ended. So, there were no new articles (other than what had already been submitted/scheduled out) and there’s no more paid moderation.

I was very discouraged by this because I have been so severely affected by chronic dry eye over the past decade and was hopeful about this resource. However, it was not the only loss that happened after the merger of Health Union and WEGO Health – there were perhaps a dozen websites that ended contracts with writers and moderators. Perhaps a reminder for all of us freelance workers not to put all our eggs in one basket.

I’m grateful for the 16 pieces of freelance work I created in 2023 (and the paychecks that followed) but I also had to take nearly five months off from freelancing due to an injury with my hands, which I will discuss in detail in my chronic illness highlight section.

Additionally, I found this to be pretty discouraging to my mental health, as well as a possible contributor it its decline, which will also be discussed since mental health has earned its own section in the digest this year.

2023 Travel Highlights

My travel adventures in 2023 were not quite what I expected. There were a few unexpected ups and downs but we ended the year with an absolutely spectacular anniversary trip to Vieques, Puerto Rico (yes, you have to wait because I’m going to go through our travels chronologically).

The first trip of the year was to a cottage in Blowing Rock, North Carolina called Gorgeous Gorge. It absolutely lived up to its name and was a gorgeous place to stay for my annual retreat. I started taking retreats before we had kids, but there’s no doubt that it has been harder to achieve now that we have two kids. I’m very grateful to my husband for helping me prioritize a weekend away each year.

We took our first family trip over Labor Day weekend in May, booking a budget rental in High Rock Lake, North Carolina. It was a bare bones home only an hour from where we live and we were planning on practically living outside at the affordable rental. Well, the weather had different plans. I could hardly believe that our entire 3-night trip was spent immersed inside due to cold and dreary rain.

I cannot recall seeing lows in the 50’s and grey rainy days for three consecutive days in May in the southeastern USA in all the years I’ve lived here, but this was the year we were granted that sight during our Labor Day getaway. To make things even harder to bear, this was the only summer family vacation we had planned for several reasons, including my husband’s work travel.

We actually left our rental house the afternoon prior to checkout because it was just too hard to keep our boys from destroying the property as we couldn’t go outside (remember, we booked an ultra-bare bones rental because we thought we would be swimming). The Airbnb owner even offered us a free night later in the summer because he felt bad for our unfortunate experience.

While it was really hard for me to accept, this trip served as a reminder that not all travel is perfect or even that fun. Truthfully, I enjoyed very little of that trip and struggled with my disappointment. I did make a very intentional decision to try a cold plunge in the lake for two reasons: so that I could say I did it and so that my boys could see me trying something new and exciting. We made the most of our unenthralling time there and I think that’s an important skill to hone no matter what kind of situation you’re in.

The next trip we needed to gear up for was something I was dreading: my husbands’ work trip. He left for nine days at the end of June into early July and I was terrified. My husband had not taken a proper work trip since our kids were born.

I felt utterly alone while he was an ocean away – not just because of the kids, but because I rely heavily on him to help me when my own physical health fails me. Thankfully we made it through with tons of help from family and friends. This extended work trip also fell on the week that we would have normally traveled as a family, which is one reason why we scrapped that tradition in 2023 – though I intend to bring it back.

In late summer, we took a day trip to the Blue Ridge Parkway. Normally, I wouldn’t include a day trip in my travel highlights, but this one was special. We were stunned at how lovely it was to take a mountain trip in the summer and have been convinced that we should do it more often. We took the boys hiking for the first time at Upper Creek Falls (and I learned that their hiking endurance was definitely not my biggest concern – their balance was). We saw the waterfall, stopped by Mt. Mitchell and then headed to Asheville for some ice cream.

Fun fact: at Mt. Mitchell my oldest asked what would happen if this was a volcano and I had to spontaneously answer on the spot in front of some friendly German exchange students….

In July, we were able to accompany my extended family for some of the time they spent on Lake Wiley – just 30 minutes from our home! We had a lovely time making the most of the amenities offered at the lake house and enjoyed time with my family members. Unfortunately, this was during the Canadian Wildfires and a few days were hazy and just downright unhealthy to be outside swimming. We still made great memories.

In late August, I was fortunate to go away for the weekend with my best friend to a gem called Lyman Lake. This is a pretty small lake in upstate South Carolina – so small that most of the locals seemed to gather together in an everybody knows everybody sort of way. I believe we could have kayaked or paddle boarded the entire perimeter in a few hours, given the endurance to do so.

We had a spectacular stay in a lovely little cottage that sat on the water on a cove of Lyman Lake. The home was nearly pristine and we enjoyed the paddle boards offered. We even saw an eagle in their nest during our trip! Though it was small, the lake was so serene that we may very well return for another weekend away.

In the fall, my husband had another, much shorter, work trip. We were able to go on three fall farm expeditions and I was really grateful because last year we were so sick we had to cancel them all. We had a blast petting goats, getting pizza and honey sticks, walking in corn mazes, and seeing big tractors.

One reason why I value the small trips so much, even day tips, is because in 2023 there’s been very little of the type of travel that I desperately wanted. For example, over Thanksgiving break I tried my best to plan a trip to hot springs in Florida and figure out how we could kayak down some beautiful waterways. It never would have worked because we ended up being sick and totally burned out. And although I didn’t get some of the cool things I wanted for travel in 2023, our trip to Vieques just about made up for everything (and we’re still not quite to that one yet).

We also began to encounter increasingly difficult issues throughout 2023 traveling with our five-year-old as he became nearly unable to tolerate long road travel. While we hope to help him overcome this obstacle, the trip never would have worked out (and yes, I will be trying again next year). I still love travel every bit as much as I have in years past, but obstacles keep coming our way and sometimes we truly do have to just roll with the punches.

Another lovely weekend trip was going away child-free for the weekend to see Needtobreathe in Greensboro for leg one of their Caves tour. I struggled a lot with pain during the trip but it was truly one of the best concerts of my life.

And, we did save the best for last. The pinnacle of our 2023 travel was a child-free (thank you so much to my in-laws) trip to VIEQUES! This is an island in Puerto Rico, close enough to the main island that we could see it from many vantage points. This was our first big trip in over 4 years, our first trip without kids since we’ve had them, and the kind of travel that I LOVE, I want to teach our kids to love, and hope to get back to doing regularly!

We saw wild horses, kayaked at night in the brightest bioluminescent bay in the world (the true motivation for the trip), sampled new cuisine, saw endless picturesque views, and snorkeled to our hearts content. I even saw a starfish!

I want to share our Vieques itinerary with you very soon, but I cannot make any promises (I know better now, after so many previously failed promises to write about things).

We had such a lovely time on the island and, while I highly recommend it, it wasn’t exactly the easiest place to travel to. We were there right before Christmas (as our anniversary is December 20^th and this trip was meant to commemorate 10 years of marriage) and we came home sick with COVID! What a way to end our travels. I’m grateful we made it home despite the imperfect circumstances.

My 2023 Chronic Illness Journey

Goodness, I hardly know where to start when it comes to describing my issues with chronic illness in 2023. I suppose I’ll start with the positives. This year I experienced the fewest rashes and the least joint pain since my diagnosis and treatment. I fully attribute this to being on my biologic (Cimzia) for two and a half years – I think they often work better the longer you’re on them, that is, as long as they continue working.

Early in the year, in February, I decided to switch from one saliva stimulant to another (from pilocarpine to exovac, for those in the dry mouth world). I switched to a stronger medication and I benefited from it, but I also suffered from it. It caused me to have intense sweating and a weird effectiveness curve – I can’t talk until an hour since I’ve taken it, then it peaks to the extent that I start drooling, and then it wears off before I can take my next dose (ideally, I take it every 8 hours). It’s also quite expensive.

I know, talking about saliva might be kind of gross. But if you ever stop making saliva naturally, I can guarantee you’ll feel differently. It’s no longer gross – it’s necessary. When my medication isn’t working for whatever reason, I can’t talk, eat, or even breathe easily. And your saliva production greatly impacts your dental health. I actually changed dentists this year because I was seeing a dentist that was just a bit too conservative for someone with Sjögren’s (and yes, my biopsy was negative but my sicca symptoms are real).

In the months I spent deliberating on switching meds, having surgery on my nose, and then waiting to be able to fill my new script, I collected about four and a half cavities. I can’t say for sure if these truly developed within six months or if my previous dentist was taking a strong “wait and see” approach, but I have gotten each one fixed and have not yet had another cavity in the eight months since (fingers crossed).

I cannot emphasize enough how important it is to get saliva production under control, whatever the cause, because too many people lose their teeth due to Sjögren’s and/or dry mouth. I would love to get my saliva glands working naturally again, without the stimulants, so please feel free to share any tips or knowledge you have with me.

SO, beyond saliva, what happened with my chronic pain and illness in 2023? Well, I decided to try something new, something borderline radical for a person in their early thirties. I was using Botox to partially manage my extreme muscle tension pain and when my Botox doctor retired, I began seeking alternative doctors. One doctor suggested that I try something called a cervical medial block instead of Botox, and I gave it a try. The medial block is a trial procedure and, if it’s effective, it will qualify you for something called an ablation. This is where they burn off the nerve endings in associated joints to relieve any nerve-related pain. I decided to have the ablation in the lower part of my cervical spine (just below your neck).

It was super scary but I had a highly experienced doctor and I trusted him. The procedure was four parts in total; two blocks where we measure the effectiveness (one of those days I actually had a neck pain level of zero!) and then the ablation which was done in two parts to try to manage the immediate discomfort afterward.

One side effect of the ablation is numbness, which should only last for a week or two, but unfortunately, in my case lasted almost three months. I don’t know why, but it was quite difficult. Also, immediately following the procedure there is increased pain because the nerves are dying off. So, for a few months I actually experienced a spike in my neck pain and my migraines.

However, once the three-month mark rolled around, in the fall, I began to experience less pain. I didn’t get down to zero pain in my neck but the levels were manageable enough that I was able to do a lot more physically with the help of some pain meds. I have been amazed at my increased abilities – and grateful because I’ve needed to be more active with my kids’ ever-changing schedules. I’m trying to make the most of these lower pain levels because this procedure is known to wear off in one to three years.

Unfortunately, around the time that I completed my ablation procedure, I began to have an entirely new chronic illness issue. You see, I knew that in order to alleviate my chronic pain I needed to add strength to my body – especially to my back and core muscles. So, I had joined a joined a gym in March in order to accomplish this goal of gaining strength. I don’t know if was too little too late or if it was too much too fast, but things went terribly wrong.

On a Friday morning in May, the weekend after our failed lake vacation, I woke up with hands that I couldn’t use. While my hands have been bothering me for years, this acute pain was different. It was pain that my body had kind of been working up to, but it had also exploded overnight in what I suspect was a combination of a storm front and an autoimmune flare.

I was fortunate to get into my rheumatologist’s office right away, where I was informed that I was not actually suffering from joint pain but from highly swollen tendons. I was given a steroid booty shot and sent on my way to the ortho doctor, who suspected De Quervain tenosynovitis (a painful condition affecting the tendons on the thumb side of the wrist). After unhelpful x-rays, I submitted to two localized cortisone injections in my wrist that were supremely painful. It’s usually painful when fluid is pushed into small joints/spaces.

While this helped, it wasn’t enough. I began occupational therapy for my hands but I struggled with my many commitments and childcare throughout the summer, so I was only able to go four times. The office was terribly short staffed, so they were more than willing to end therapy anyway.

In the midst of my hand crisis, I also experienced a knee crisis. Two weeks after my hands flared up, I was suddenly unable to walk on my left leg due to my knee pain. I went from normal function to practically bedridden in two hours. As much as I was convinced it was autoimmune related, the ortho doctor told me it was the patella/tendon in my knee causing issues.

This happened about a week and a half before my husbands’ extended business trip to Germany and I went into full panic mode that I wouldn’t be able to walk while he was gone (thankfully, I was mostly ok and mobile). I got yet another injection (Toradol this time) and began physical therapy for my knee. It was ironic timing because my physical therapist had run out of ideas for treating my neck pain since I couldn’t do most of the exercises that involved my hands, so she was happy to switch to knee therapy. She helped me a lot and, while my knee still hurts and wobbles from time to time, I’ve made good progress.

But for weeks I was unable to use my hands or only able to use them with disabling pain. I convinced my sons to climb into their car seats themselves and do other tasks that required a bit more independence on their part. I felt bad because so much had already been taken from them by having a chronically ill mom and now even more was being taken away. Such as their love for me holding them in the air like a plane. But what could I do? I needed to heal.

While I was deep in the summer – not working, using my hands as little as possible – I developed intense tennis elbow. I went back to the ortho doctor with questions: How could I possibly have this onset of tennis elbow when I’m not using my hands? He didn’t have an answer, but provided me with a support brace and let me know it could take nine to 12 months to heal.

In September, after my boys were in school, I began walking again as my knee would allow. I tried to dedicate at least one, hopefully two, days a week to walking since it was all I could do. Every once in a while, I’d do something incorrectly, out of ignorance or lack of options, and set myself back. But I was making real progress with the pain that ran along my radial (side) wrist. Then, in late October, I suddenly had an explosion of dorsal wrist pain after a fall where I landed heavily on my hands. (This dorsal pain was on the top of my wrist where it meets my hand.)

I went back to ortho and was recommended oral steroids. Later, I returned to get another very painful injection in the hopes that it would aid me in enjoying my trip to Vieques (it did). I also restarted hand therapy at a different location that had more availability, although the therapist had admitted that my hand pain and history don’t make a ton of sense.

There’s some thought that my early in the year gym exercises aggravated my small joints because my big joints were not ready for the burden of the workouts. But how will I fix that problem without being able to use my hands? I’m unsure. I genuinely suspect that there is a degree of autoimmune tendonitis going on, but I can’t prove it. I am scheduled for an MRI with arthrogram, but I suppose you may just have to wait until next year’s digest to find out more about my seemingly never-ending hand pain saga (truly, I am exasperated to have lost so much hand function over the past seven months while I’m constantly wrangling little kids and wanting to do so much more with my life).

There’s one other big facet of my chronic ailments that impacted me throughout 2023: my migraines. I’ve generally had a hard time with them since they began in earnest in Spring 2022 but the summer was a particularly rough time. I suspect that the brightness of the sun and perhaps the heat and humidity would lead to the onset of a migraine. I’d often leave the house to go pickup my youngest son, encounter the brightness and heat as I left home, and feel the migraine begin to settle in.

My rescue medications work for migraines pretty well, but they are not always accessible if I’m driving or out of the house and don’t have them with me. The earlier you take them during an attack the better they work. I’m honestly not sure how well my preventative is working at all. There is a hormonal aspect to the migraines that I can count on pretty regularly. I also suffered from clusters of migraines during the heightened pain right after my ablation. I’m seeing a specialist in a few weeks to consider Botox for migraines; this specialist also tries alternative headache treatments which I’m quite open to.

Random migraine tip: I found this awesome low-odor bug spray that’s pretty effective! Between the DEET stuff I used for myself and the citronella stuff I was using for my littles, I quickly learned that odors were easily able to trigger a migraine. It’s called: Picaridin Insect Repellent Spray.

It’s scary living in chronic pain every day – especially multiple types of chronic pain that can hit at any time. It’s even scarier trying to choose outdoor exercise because of the inherent risk of fluid disability.

Towards the end of the year, I had a mild flare up of my rare cornea disease. It lasted almost 10 weeks until I was able to get it under control with steroid drops. I’m so relieved that it resolved, because it could have been so much worse. (This started in 2020 during my pregnancy).

Some other wins from 2023 include getting comfortable with my CPAP machine (now that I’ve fully switched to the nose pillows) that I’m wearing it every night – that only took an entire year! I’ve seen huge benefits from it though, now I just have to hit that magical eight hours of sleep that all my doctors keep telling me that I need.

I also began seeing weight management, which includes a nurse practitioner, a nutritionist, and an exercise consultant. However, my appointment with the nutritionist has been postponed three times due to illness so we’ll have to wait and see on that one. I am truly committed and excited to have this extra layer of help and accountability for my weight loss journey.

I also got to attend my lupus meeting several times this year with my youngest son in tow. We also were able to resume in person events and had a great time reuniting with old friends.

To end this section on a lighter note, here are some funny things I shared that happened due to brain fog.

Struggles with Mental Health in 2023

Yep, mental health gets its own section this year because it affected my life so severely. It’s one of the reasons why there has only been one blog post between last year’s digest and this digest (another reason was not being able to type for several months due to my hand issues).

My word for 2023 was “new” and I was so excited to go to the gym and try new things to improve my life, but things didn’t work out the way I envisioned and the serotonin levels in my brain certainly didn’t help me.

I continued to have SO MUCH THERAPY in 2023. I saw my therapist weekly whenever I could, sometimes attending with my husband because she is also our marriage counselor. At some point during the summer, I decided to also start seeing a therapist who specializes in EMDR (eye movement desensitization and reprocessing). I kept having traumatic memories from my childhood come to the surface, possibly as I continued to process the loss of my mom. I also found EMDR therapy helpful for trauma I’ve experienced more recently and just helping calm down my oversensitive nervous system in general.

I also continued my journey with ketamine. I started at the end of 2022 and had just renewed for six more session with Mindbloom as the 2023 started. While I had previously found ketamine to be life-changing, I suddenly found it to not be helping much. First, I thought it was a faulty batch, then I thought it might be a tolerance issue.

Eventually I switched providers and started using the River Foundation, who prescribed a higher dosage. While I learned a lot from the weekly group calls, I found their approach to be a bit laissez-faire considering we were dealing with ketamine. I took a break from this because it wasn’t working – and it was pretty expensive – only to find my depression taking me on a deep dive into places I never wanted to go. To be frank, I was scared.

From September through November, I decided to try IV ketamine treatments, which have helped a lot of people who weren’t able to adequately treat their depression with oral ketamine. I had a few incredible sessions out of the seven I followed through with, but ultimately found myself in a place where I was experiencing both tolerance and increased feelings of depression.

I have felt really lost since both oral and IV ketamine failed me. Since I knew that psychedelics had been useful, to an extent, I worked really hard to further pursue this course of treatment for my depression but my efforts, though successful, unfortunately did not help in treating my depression. As the end of 2023 approached, I felt truly scared about where depression was taking me. I even discussed the possibly of TMS (transcranial magnetic stimulation) with my therapist – while sobbing, I might add. I consider TMS to be a last resort for me for a plethora of reasons but I had an unexpected U-turn occur.

When we took our lovely anniversary trip to Vieques I suddenly became me again. I was up early, practically dancing with energy, barely able to contain my enthusiasm to GO and DO and SEE. I think I drove my husband a little nuts. I felt genuinely perplexed by the transformation. If I have serious depression, don’t I simply have it? How can a vacation practically turn me into a different person?

The only explanation my therapist could offer is that it’s similar to when someone who is doing pretty well suddenly experiences an intense depressive episode – except I went in the opposite direction. And I must admit that removing the burden of caring for our children (whom we love dearly but require almost depthless amounts of energy) while adding in sunshine, beautiful scenery, and swimming! One of my favorite activities in the world! Plus, not having to cook, or clean, etc. All of that together could certainly make one’s brain happy.

And, even though we came home with COVID, I’ve been trying my best to carry the momentum from that trip into my everyday life with little things that are similar to our vacation. This includes signing up for a water aerobics class, putting more stock into the time I have that is child-free, and making time to do fun stuff with my husband. I desperately want to avoid doing TMS and I also want to understand what makes my brain happy. If anyone else has ever been through this or has any insight on the sudden lifting of a depressive episode, I’d love to hear your thoughts on the situation.

Parenthood Highlights

Our boys turned two and five years old in May! We took them to the N.C. Transportation Museum in Spencer, NC that has a ton of cool stuff but most importantly – trains.

I always talk about how our boys grow older but what about my husband and I? We both turned 33 in 2023! Haha.

In the spring, our boys wrapped up their school in the 1s and the public 4K school and had a bright summer. We took our two-year-old for his annual ortho visit and learned that his rare disease is currently totally self-resolved.

I have heard from other parents of children with Caffey disease with good and less than good news. One parent shared that her almost teenager is experiencing a resurgence of bone growths. I also spoke with a genetic counselor who told me she knew of a few adults who had also had bone growths later in life, which is not reflected in the literature. I hope to continue to follow this illness and contribute to the shared knowledge about it in any way that we can.

This was also our second year knowing about our older son having USP7 disorder and I’ve greatly enjoyed the community in the family support group. There was also a conference this year where researchers shared some truly exciting things about USP7, including the potential for gene therapy.

Knowing that our son has this disease made it a bit easier to take action on symptoms that are commonly associated with USP7, such as poor growth. We took him in to see a GI doctor in April and made the decision to start him on an appetite stimulant. He gained seven pounds but then quickly lost three pounds after taking him off the medication in July. We resumed the medication in September on a lower dosage in the hopes it will provide steady growth for him.

We also seriously considered iron infusion due to his low ferritin levels interfering with his sleep via PLMS (periodic limb movement syndrome). However, we ultimately decided that the benefit of iron infusions would not be greater than the ordeal of going through them. (We did try oral iron supplementation for almost a year with no change in his ferritin levels.)

We also continued his behavioral therapy throughout almost all of 2023. While we saw great improvements overall, we decided to stop in the month of December after his therapist(s) were removed and we didn’t want to proceed with different people at that time. It was tough, but it ultimately gave our family a break and we’re taking the time to reevaluate our decisions in how to best help him manage his behavioral challenges going forward.

In the fall we were excited to watch our two-year-old go to school five half-days a week. He’s truly thriving and loves his teachers and his friends. I’m also greatly relieved to have had so much time to pursue my much-needed medical appointment and let our youngest son release some of his incredibly loquacious energy at school (read: he talks a lot).

Our oldest son started kindergarten this year and we totally cried. We sort of accidentally but favorably ended up enrolling him in an IB magnet school. (Who knew that IB started in kindergarten??? Not me!!) Within the first three weeks of school, we realized he was being mistreated by the teacher due to his disabilities and had to go through a period of great emotional distress to get him into a better classroom for his needs. Thankfully he’s now thriving, although it feels like he’s gone forever and walking past 13 houses to get to the bus stop has changed our lives a little bit (last year he was given a driveway stop).

Other Personal Updates

But wait, there’s more! In addition to everything else I’ve covered; we were sick a lot. This may be a small thing for some families but it’s a big thing when the mom of the family is chronically ill. The burden is shared across the family.

The year started with a stomach flu, included a Valentines Day date to urgent care for strep throat, and went through the typical fall progressions, including a fair number of canceled plans. It wasn’t nearly as bad as the previous year, however, when it felt like we were always sick and had to cancel everything in the fall.

And, of course, we ended the year having COVID (although thankfully our kids were at my in-laws and we did not pass it on to them). We were ever so grateful for Paxlovid and the fact that it seemed to stop the symptoms before they could get too serious, even if the side effect of tasting metal drove us both up the wall.

One of the hardest parts of being frequently sick is that the effects of my Sjögren’s dryness can easily mimic a cold so sometimes I wasn’t sure if I was getting sick or not. It’s also tough because many things that you take during viral illnesses to alleviate symptoms can exacerbate dryness so it feels like I just have to choose which suffering I’d rather have.

Aside from being sick, we had to take on the immense physical and emotional burden of cleaning out my late mom’s house once we were finally able to access the property in February. We spent about four weekends devoted to cleaning out the home. We kept very little, as the property was mostly trashed and many items of value had been stolen. I struggled with my chronic dry eye as we dealt with the dusty home that had been smoked in for years.

It continued to be a year of firsts without my mom until her death anniversary in September. My first birthday without my mom. My kids first birthday without one of their grandmother’s, even though they didn’t really know her. I tried to celebrate her life by going horseback riding (something she enjoyed in her youth) and it wasn’t at all like I thought it would be. But I do think it helped me keep from drowning in grief.

Looking forward

It seems like it’s getting a little bit harder to look forward each year. I keep thinking that things can’t get harder and then they do. In my digest from last year, I wrote:

Part of me wants to go hug the old version of me that wrote that. I want to encourage to go forward with passion – but maybe not join that gym that seemed to have sent my hands on a painful and useless journey.

I’ve never really been a big resolution person but I have in recent years enjoyed choosing a word for the year. This year my word is MOVE. I picked it because I want to move physically into better health, emotionally into better spaces, spiritually into where I’m meant to be, and so many more manifestations of the words “new” and “move”. I want to do it carefully, though.

Severe pain has left a mark on me. I’ll always be a slightly different person because of the pain I endure on a regular basis. I’m not sure that pain will ever leave my life entirely, but I am hopeful that the worst of the mark will fade.

Sometimes I feel like I’m just watching the years passing while I’m suffering from chronic pain. My hope is diminished when I don’t see the pain improve in the way I want it to. So, one goal for my year ahead is to celebrate some form of win every day, whether it’s gratitude or making it to a water aerobics class or maybe just not losing my mind from the awfulness that we go through sometimes in life.

I want to hold onto as much hope as possible. Because hope is incredibly powerful. My intention is to bring momentum into this new year. I trust in myself to keep working hard to figure things out. I’d rather have an easier journey (wouldn’t we all?), but I’m also proud of myself for going through all the hard things that happened in 2023 and remaining committed to improving myself.

Oh, and here’s an adorable Christmas photo with my kiddos.