Last week Lucy Trieshmann left a doctor’s office feeling particularly disheartened. “I was in a lot of pain and didn’t think I’d been given any recourse, which was super upsetting,” she says.
So she went home and shared the following post on Instagram.
https://www.instagram.com/p/BnHa2aOgNzp/?taken-by=lucytrieshmann
“I’ve learned it’s always possible to bounce back from that because if it weren’t I wouldn’t be here,” says Trieshmann, 23, a recent college graduate who lives in Charlottesville, Virginia. “And so that was a reminder to myself that even though things were really hard in that moment, I’ve bounced back before and it gets easier and I bounce back faster every time.”
Trieshmann has a lot to bounce back from.
She’s currently living with three serious chronic illnesses: postural orthostatic tachycardia syndrome (POTS), Ehlers-Danlos syndrome (EDS), and most recently, rheumatoid arthritis (RA).
Trieshmann says she’s been dealing with chronic pain and joint issues since she was a child, “but we never really put two and two together that there was something larger going on, until about two years ago.”
Some days don’t bring answers or relief, and it’s hard to stay positive. Am I always happy about my journey? Absolutely not.
The Long Path to Getting Answers
In the fall of 2016, during her final year at the University of Virginia, she started passing out at marching band practice. Not normal. “Why was I passing out when when I had been training for a 10K just a couple weeks prior?” Trieshmann wondered.
After months of doctor visits and various tests, she was diagnosed with POTS, which means her body has a hard time circulating blood to her brain when she stands up; this is what causes patients to feel dizzy, faint, and pass out frequently.
POTS can occur on its own, but it is often due to a related condition, so Trieshmann’s doctors started to look deeper to find a root cause of her issues. They wound up diagnosing her with Ehlers-Danlos syndrome, which is a genetic connective tissue disorder. For Trieshmann, EDS affects her entire body — her heart, veins, skin, gastrointestinal system, everything.
The diagnosis helped explain a lot of the strange symptoms and illnesses she experienced throughout childhood.
“I would get hurt a lot. I sprained my ankles more times than I can even count,” Trieshmann says. “I actually tore my labrum in my hip in 2009 and didn’t think it was a big deal, they told me I just sprained it and it was fine. We didn’t figure out I tore my labrum until last year, and I had to have surgery to completely reconstruct my right hip.”
Days like today make me want to quit, to lay down and let what will be, be. This might seem antithetical to the idea of choosing happiness, but in reality it’s the most important part.
And Then, an Out-of-the-Blue Rheumatoid Arthritis Diagnosis
After Treishmann was diagnosed with POTS and EDS, her primary care doctor decided to send her to a rheumatologist “just to check all our bases.” The doctor ran a bunch of blood tests to look for autoimmune diseases, but Trieshmann was expecting everything to come back with normal results.
And then it did not.
“They called me and they were like, ‘so you have RA,’” Trieshmann recalls. “I was like, ‘excuse me?’ And they said, ‘Oh, yeah, your markers came back super positive for RA and we’re going to start on you on this medication.’ It kind of hit me out of nowhere.”
Trieshmann even went so far as to double-check with doctor that she had called the right patient. “I was like, ‘hold on—whose results are you reading?’”
Only from our lows can we begin to climb high. The difficulties teach us to appreciate the wins more than ever.
Living with Pain Day to Day
Trieshmann can’t necessarily differentiate between her EDS and her RA — “I just know that pain is pain.” However, she doesn’t typically experience the swelling that’s common for RA patients, at least not yet.
Her pain usually comes and goes. “I’ll have a few weeks that are really bad and then a few that are better,” says Trieshmann. “The best my pain ever feels is a four on a one to 10 scale. That’s the best it usually gets. I can function well and I usually don’t take meds when it’s like that.”
She does physical therapy at home five or six days a week, focusing on joint stabilization to help her EDS and RA; cardio helps manage POTS.
Trieshmann takes Plaquenil for her RA, which she’s only been diagnosed with for a few months now. She takes a few different medications to manage her EDS: GI drugs to help prevent constipation and reduce stomach acid; vitamins to help counteract the malabsorption issues; and pain relievers for her joint pain. For POTS, she gets saline infusions a few times a week to bring up blood volume and blood pressure.
Does it still absolutely suck in the moment? Yes. But without these opportunities to regrow, we can’t begin to find peace in the journey.
“When I have a pain flare, though, that gets difficult,” says Trieshmann. “I have trouble using the computer because of my hands. I have special splints that I wear to help with that.”
Being in pain impacts your concentration, she says. “It’s difficult to work when you’re having trouble concentrating. It’s also very difficult to motivate yourself to exercise when you’re in pain already, but it helps me feel better so I have to convince myself to do it anyway.”
The Will to Stay Positive
On the day Trieshmann wrote the Instagram post, she did so because she’s learned how important it is to “let herself grieve” when she needs to.
“Things were really hard that day and I let myself be upset about it, I let myself cry, I didn’t deny myself the ability to do that because I would have just been bottling it up and it would have just poisoned my attitude,” says Trieshmann. “By letting it get out, I was able to make room for more positive thoughts.”
Staying positive is choice, an exercise of willpower.
“I’ve made a conscious choice that I don’t want every minute of every day to be miserable. It very easily could be because all the things that have been happening could easily make someone unhappy,” says Trieshmann. “So I have to make a conscious choice every single day to be happy and not let it get me down, and that’s what it boils down to. There’s no special trick, it’s a matter of willpower. And allowing yourself to feel the things you need to feel, but then picking yourself back up.”
When I’m frustrated and upset to day, I know that just means I’ll have even more motivation to get back to climbing tomorrow.
Follow Lucy on Instagram @lucytrieshmann (and while you’re at it, follow @creaky_joints too).
