Another year has passed and now I’m writing another blog post wrapping it up. I chose worthy for my word and wore the word on a necklace the whole year. For my headings, I’m picking the main points I hoped for last March.
This year was full of highs and lows. I survived, things are for the better, and a lot of learning has been had.
I am worthy of a diagnosis.
Diagnosis #1
The beginning of the year was really difficult health wise. In 2020, I was diagnosed with an arthritis disorder called Ankylosing Spondylitis. It was very validating to have a name for all of the chronic pain and issues I’ve had. However, post-steroids and immunosuppressants, I just kept getting sicker and sicker. Since having Evie, I have had 1-2+ hospital visits or stays a year for something very serious. My pain levels were the worse they had ever been, even with extensive physical therapy. My quality of life was awful.
Rheumatology found some abnormalities in my MRI and referred me to gastroenterology.
Gastroenterology referred me back to rheumatology.
Rheumatology referred me to hematology.
Hematology referred me back to rheumatology, a genetic counselor, and for cancer screenings.
A lot of doctors were honestly jerks. 0/10, do not recommend.
I ended up just being so burned out from doctor’s appointments that I ended up getting a concierge doctor. I was diagnosed with lyme disease, which frankly makes a lot of sense with the amount of ticks I have removed off of myself in my life. I remember removing “the tick” in graduate school in the shower, and while the symptoms did coincide with that, I never had the infamous bullseye rash.
Apparently, being diagnosed with an autoimmune inflammatory illness is a very common misdiagnosis for the arthritis lyme causes. It also causes hair loss, aches and pains, headaches, and the MRI findings with my bone marrow that was wrong. I’m glad to have this figured out!
Diagnosis #2
During my gastro appointment, my stomach issues were finally figured out. I have been going to doctors for this for years too and been shuffled around. Well, I have Congenital sucrase-isomaltase deficiency (CSID)- a rare congenital enzyme deficiency for sucrose, maltose, and starches that only impacts .2% of the US population… yay! Meaning, I have a really hard time processing real sugars + carbs; this explains A LOT about why the only times I’ve felt really good in my life is when I have been on keto.
The enzymes cost insurance about $30,000 a year as there isn’t a competitor. At the beginning of last year, I think I had worked myself up to having SIBO and I was sick as a dog because of this. I have tried the enzymes for starches, but they honestly made me sicker after eating food. So, I’ve been trying to figure out my tolerances and trying to eat more protein and lower starch/carb, which frankly is nearly impossible.
Where am I now?
My quality of life is a lot better. My pain is a lot lower. I do have arthritis left over from years of untreated lyme.
During my many specialists, I went to a pain management doctor and while I did not end up doing the slew of treatments he recommended (steroid shots to the back, nerve blocking medications etc.), I did do dry needling on my neck and it improved things for me that years of physical therapy could not in just a few sessions. I need to go back to that, and when we’re finished with the dry needling treatment, I will be getting botox injections to keep those neck and shoulder muscles where they should be.
I know what foods trigger my stomach issues at this point. Stuff like sauces and starches get me every time. Since my diagnosis, Devin has not had to rescue me because I had a stomach explosion; although, toddlers are honestly extremely empathetic about these kinds of accidents.
Wooo… moving on.
I am worthy of community.
At the beginning of the year, stuff was still pretty limited socially because of how people handled the pandemic here. I started going to the gym like 3-5 times a week back in November 2021 because I was so lonely after I pulled Evie out of preschool. She was able to see the same kids everyday and I was able to have some alone time after she dropped her naps.
That’s kind of how the first few months of the year continued. Still, no young kiddos at church. People are busy and they work a lot here. While I have many people I really enjoy here, I need more than quarterly visits with less than a handful of people. As weather became better, I started spending time with two moms I met from preschool.
I went on a Mother’s Day trip to Williamsburg with these ladies. This trip really pointed out how different we were without our children, and I felt pretty uncomfortable. I was the sober third wheel and I honestly just missed my family.
On Mother’s Day, I woke up and they were already packed up and said they had decided to meet up at a donut shop instead of the hotel for breakfast, and decided together to do something I wouldn’t be able to do. While I was less than a mile away from the donut shop, they called to say they decided they didn’t want donuts anymore and had already left.
I drove home on Mother’s Day crying and listening to a sappy audiobook. This was not what I was hoping for, and made me feel quite the opposite of worthy. I’ve never been more appreciative to see my family.
While I don’t wish being ghosted on anyone, it did give me an opportunity to try to make community again; which frankly, I had already put a lot of effort into before the pandemic started. I prayed a lot and told God that I needed friends and community that invested back, or I wanted Devin to have a good job somewhere else.
This was difficult for me because I really love a lot of things about here, but it’s also been incredibly hard socially because people are very socially established with their families and friends from growing up.
I had the idea of starting a stake wide play group (a grouping of 8 churches in our area of the same denomination), and God got to work in other ways too.
It took a few months, but the church play group really started to thrive. We had a lot of families with young children move in towards the end of summer. We were invited to impromptu beach trips, one of them after only having met us once, which is a huge gamble considering we were all staying in the same beach house! Honestly, I was a little suspicious of having a group of ladies that all seemed to get along with each other, but people expressed they were really lonely too and needed community as well. I was waiting for the other shoe to drop, but it’s honestly just been really nice, and my anxiety has gone down a lot as I’ve been able to spend more time with them.
We had a Friendsgiving dinner, a bunch of us have a membership to a trampoline park, and there have been a lot of invites back and forth. It’s been refreshing to have community, but also have that investment reciprocated.
Want to know one of the best parts of all of this?
We had a family with 5 kids from church literally move on the other side of our town home; our first conversation we talked loudly from each of our decks to each other. It has been amazing, Evie is so loved, and we spent conference Sunday and Thanksgiving with them. What is really cute and also unexpected, Evie at 4 has really connected with their 8 year old daughter and they are really kindred spirits.
Would I want to re-do this whole first half of the year again? NO. However, more than being worthy of community, God showed up for me in a big way by providing a miracle I didn’t even know could happen. Beyond that, it was a huge confirmation that we are in the right place for us right now and I’m appreciative!
I am worthy of fulfilling hobbies.
I started out so strong going to the gym, figuring out my dietary issues and meal planning, doing Duolingo, and then just kind of fell off track this fall when Evie started preschool.
I struggle with transitions, and I didn’t realize how having 12 hours a week to myself was KIND OF HUGE. Like, I can leave the house BY MYSELF regularly. I appreciated having the social outlets that the church play group created, but I also ended up being sick a ton because of the preschool exposures too. My hobbies simplified post-preschool to audiobooks, plants, and the shrimp tank.
In November, I was starting to dust my feet off to get back at something and Devin’s mom was diagnosed with brain cancer. Epic depression ensued and I struggled with basic functioning. It honestly made me question kind of everything from where we lived, how far away it was from family and friends we’ve known a long time, and I cried a lot.
We went to Utah and spent a lot of time with friends we haven’t seen in years and it really lifted my spirits. I felt like I could function again.
For 2023, I realized I might need more deliberate effort to function over the next year with whatever hits us. 2022 taught me that I am worthy to answers to prayers, and sometimes they’re even better than I could expect; admittedly though, they don’t always come when we ask for them.
This year, I’ll be needing and repeating those prayers, but also trying to live the rest of my life with more purpose.