Friday, October 29, 2021

The Second Trimester

It’s hard to believe that at 35 weeks of pregnancy, I’m just getting around to writing about the second trimester. But such is life. Although the first trimester seemed to drag on, the second trimester seemed to fly by.

While the nausea of the first trimester thankfully retreated around week 14, the fatigue remained. I did get a few weeks of reprieve, but I didn’t take nearly enough advantage of it before the fatigue came back full force and even worse than before.

They say the second trimester is the “honeymoon” period and I guess in a way, it is. I wasn’t at the totally uncomfortable stage yet.

And while lupus and RA have continued to lay low, at around the end of second trimester, I started to feel that my immune system was starting to become overactive. Like it was trying to tell me that it had been accepting of this uninvited guest for seven-ish months, but not so much anymore. It felt like my nerve endings were sometimes on fire. And I kind of had that feeling of being tired and run down, almost coming down with something but never actually getting sick.

As far as symptoms in the second trimester, like I said, good old fatigue was back in full force, along with severe heartburn (thanks baby hair) and itching (more on that in another post; forthcoming).

As far as cravings, French fries continued, along with potato chips and popcorn. Plus protein. I’ve never been one to eat protein without a bun, but I often found myself going for straight protein (the plant-based kind, of course). Iced tea was the other thing that I majorly craved, and not just because it was summer.

Though there was nothing I wanted so bad that I woke my husband up in the middle of the night and in the most Veruca Salt-y way said “I want this, and I WANT IT NOW.” I’m sure he was relieved that there were never any middle of the night runs to the store. But we definitely have learned that our son’s carb addiction is no joke. I hope he’ll still want to eat potatoes when the time comes.

The only aversion I really experienced was to coffee still. But I anticipate that once the baby is here and I am sleep deprived, coffee will definitely be a staple in my life once again.

One thing we weren’t quite expecting was the frequency of appointments and the level of surveillance that would start in the second trimester and continue through the third trimester. Looking back, it makes sense given the high risk nature of this pregnancy, but we didn’t feel fully informed or prepared when it was sprung on us that we’d be seeing the high risk OB every other week until 30 weeks and then weekly after that, along with having fetal echocardiograms from the beginning of the second trimester every other week until 28 weeks and then a final one at 32 weeks.

For me, pregnancy has been harder than I expected. While my autoimmune stuff has been mostly quiet, my body pretty much hasn’t felt like my own the entire time.

Wednesday, October 13, 2021

My EULAR 2021 Experience*

This post is long overdue. Blame it on pregnancy, I guess. Way back in June, I virtually attended the European Alliance of Associations for Rheumatology (EULAR) Congress.

This was the first big conference I attended virtually and it was a lot to take in. Normally, when you attend in-person, you have to really pick and choose because you can only attend one session at a time. But because of time difference between the United States and Europe, most of what I attended, I wasn’t attending live. So it provided the opportunity, in a way, to be in two places at once, and to explore more sessions that I might have otherwise gotten to attend.

I attended sessions on a variety of topics, including:

-         The challenges patient organizations faced during the pandemic

-         Co-/multi-morbidities

-         Collaborative research and patient participation in decision-making

-         COVID-19

-         Diet and Rheumatoid Arthritis

-         EULAR recommendations

-         Fatigue

-         Health disparities

-         Lupus and pregnancy

-         Multidisciplinary care in Rheumatology

-         Stress

-         Treating Lupus to target

-         Treating Rheumatoid Arthritis 

Unsurprisingly, various topics around the COVID-19 pandemic and its impact on rheumatology patients was front and center. But so were topics that surprised me, like the impact of a vegan diet on RA outcomes. I’m vegan, so I was so there for that. I certainly could spend time here talking about individual sessions, because there were many that actually made me think that the discipline of rheumatology has come farther than I previously thought in the 13-plus years that I’ve been sick. What I really want to talk about is the culture of EULAR.

What struck me the most about the EULAR experience, even from across the world and behind a screen, is the role that patients play. EULAR has a specific track dedicated to patients, PARE (People with Arthritis and Rheumatism). Sight unseen that impressed me. But the whole feel was just much more patient-friendly than other professional conferences I’ve attended. Like the doctors presenting realized that without their patients, they wouldn’t be able to do what they do.

Many presentations included patients and some sessions were entirely patient-led (read: not presenting posters in the far corner of an exhibition hall). I’m super appreciative of EULARs efforts to recognize and elevate the patient experience, to include patients in the research process, not just as guinea pigs but as equal participants, and to allow patients to have a seat at the table, and a voice, at their Congress. Not only that, it seemed like patient participation wasn’t just a one off, once a year, let’s include patients at the conference so we look cool kind of thing. There is definitely a commitment to making sure that patients are included.

In 2021, I don’t think this idea of patient inclusion at professional conferences should be so novel, and yet it is. I just hope that other organizations can take a page out of EULARs book and do some soul searching regarding their level of patient inclusion. Nothing about us without us, right?

For contrast, read about my American College of Rheumatology (ACR) experience from 2014.

And if you’d like to hear more about the EULAR experience, and specific sessions, you can watch all of the AiArthritis debriefs on YouTube.

It was a pleasure getting to know and spending (virtual) time with the ladies of AiArthritis.

* The International Foundation for Autoimmune and Autoinflammatory Arthritis (AiArthritis) sponsored by attendance at EULAR and this post. However, the content and opinions expressed here are solely my own.