Well it has certainly been a while since I last posted. 2023 was a year full of challenges, one after another it seemed, and all of them came while going through the first year of grieving my dad.
Early in the year I got food poisoning while visiting the shore. That lasted longer than I’ve ever had food poisoning for, was quite awful, and has had continued, residual effects. It was followed soon after by a diagnosis of Hashimoto’s Disease. I had heard of Hashimoto’s but had never considered I might develop it myself. After that I was diagnosed with Celiac disease. Those weren’t enough apparently, and I developed frozen shoulder (fun!). And then after all of that I was sent for a bone density test, and learned I have osteopenia. I began hearing such reassuring admonitions as, “don’t have any falls, your bones might fracture more easily now!” It all quite impacted my day-to-day life, my mood, and my outlook. It also impacted my expectations for the future.
At best and at worst
My doctors recommended learning as much as I could about living with autoimmune disease. However, as wonderful as they have been, it seems doctors fail to provide that education themselves. The simple reason for that appears to be that few doctors (relatively speaking) understand autoimmune terribly well. The guidance regarding Celiac is rather straightforward. It’s something I’m already familiar with since I have a family member with it. But the guidance for Hashimoto’s sometimes seems to contradict itself, often seems to not be based on very strong evidence, and also seems to be quite individual. So that has been hard to figure out. It has all created a whirlwind at best, and an uncomfortable, sometimes unpleasant, scary, and painful roller coaster at worst.
Learning and rethinking things
I guess that’s the gist of it though, isn’t it? The worst, so far, seems to be this roller coaster of symptoms and uncertainty. I’ve had to revisit previous beliefs I had about food (like, whether veganism is good for me – apparently it isn’t, not for me), spend way more time thinking about what and when I eat or how I will afford eating a super healthy diet, address episodes of frustration and anxiety related to these new health issues, and crucially, make sure I do actually take better care of myself.
One thing I have learned is that some of these conditions can have “flares.” The term is rather new to me, hence the quotation marks. These flares can be really difficult to deal with, and sometimes cause very real stress. I’m currently mostly over the frozen shoulder, am on – I think – a steady course of healing, but am experiencing a “flare” right now. Still, I am mostly optimistic. I’ve been able to follow most of the guidance (as far as I understand it). And I’ve also been able to do things that for months last year I was unable to do.
But I used to be so healthy!
When I was eight or so I had Mono. For weeks I missed school and was basically confined to staying in bed and taking ice cold baths. I also spent a lot of that time reading and playing with my dad (not having any idea of how serious Mono could apparently be at that age), so I actually have fond memories of that time! Other than the Mono I was a healthy, very active kid, and I continued to be in a state of good health most of my life. This is all really new to me, having actual chronic conditions; it’s a lot to get my head around.
New hopes and visions
In January of last year I did not foresee the challenges that were to come, beyond grieving. I have had to rebuild somewhat tenuous new hopes and visions for this year. They are different hopes and visions than what I had last year; they center my own health and well-being, they are more open and flexible, and in a way they may be more authentic.
A year full of joys
At the same time, I know that last year was also a year full of joys: I was able to see my daughter and her partner numerous times through the year; my husband and I traveled to places we love and to places we’d never been; I had many opportunities to enjoy the beauty of nature; I attended cultural and arts events; and my holidays were celebrated with love and family.
The health issues, the many challenges I was suddenly faced with, didn’t ultimately define the year. Even the grieving process I knew I would journey through, didn’t define the year. I can reflect on last year and look ahead knowing that this year might also be a year full of challenges, but also a year full of joys.
So that’s some of where I’ve been! 🙂 Still here, just going through some new stuff. If any of this is true for your own story, please feel free to reach out and say hey. I’m always happy to hear from others!
~ Nellie
p.s. the feature image is of Mount Mansfield, in Cambridge, VT. I chose this photo because it kind of sums up how life felt last year – very big, sometimes overwhelming, mysterious, and always still profound and beautiful.