Day 12: Nurses and Healthcare Professionals Who Listened to, and Supported You
We've talked about medical gaslighting, but what about the other side of the industry? Obviously I've had a lot of less than great medical encounters. Oh, who am I kidding, this is my blog, I don't have to sugarcoat anything, there has been some serious trauma. But! There have also been a few medical professionals over the years who have been especially wonderful, and I'd like to focus on three of those women today- Dr. Staats, MD, Dr. Antonik, MD, and Rachel Yaghoubian, PT, DPT, OCS.
The first is one of my pediatricians, Dr. Stacy H. Staats in Burke, VA. She's still practicing, along with her partner, Dr. Laurence J. Murphy (who you may recognize because INOVA recently renamed their entire children's hospital after him). As with many kids with undiagnosed EDS, I had a lot of mysterious medical issues. I certainly gave that practice a run for their money. But Dr. Murphy taught me a couple of phrases that my family still says two decades later.
"Pain is your friend. It tells you when to stop." This was the only bit of practical help I got as a child in terms of joint pain. It wasn't always advice I could follow, but at least I learned it. Being a kid and hearing "pain is your friend" was a little bit jarring, until he explained what he meant- pain is the thing that tells you you're doing something you shouldn't be doing. If we didn't have pain, we wouldn't know to take our hands off of stove burners when they've been turned on. Pain protects us from damage. So, in a way, it takes care of us. And that's what friends are supposed to do too. This taught me that a) friends are supposed to take care of each other and b) if I'm feeling pain, I need to stop what I'm doing and regroup. Super valuable information.
"The good news is she can eat whatever she wants. The bad news is she can't go outside." I'd gone in for allergy testing. Every single outdoor allergen showed up (plus some others). He tried to put a nice spin on it by assuring us that at least I didn't have a peanut allergy or anything, which, you know, is definitely a good thing. There's no way he could know that I'd develop food or antibiotic allergies later, of course. This was our first glimpse at MCAS, though we weren't aware of it at the time.
They both talked to me about my skin. I remember this being a very serious conversation. I'd gone on a Girl Scout camping trip to Assateague and, despite being diligent about sunscreen, had come back with a terrible, blistering sunburn covering most of my body. They didn't blame me, they didn't blame my parents, they believed I'd been applying it regularly and doing my best. But they also reminded me that I am very, very pale. And that I am translucent. And told me that sunburns are cumulative. And that I cannot, under no uncertain terms, ever get a sunburn this bad again. And they talked to me about very uncool ways to keep it from happening, like wearing big hats and long sleeves (something every 11 year old wants).
But this is really about Dr. Staats. In high school, I got sick. Like, really sick. There are massive blank spots in my memory sophomore through senior year. It wasn't too unusual for me to get sick; I had strep at least twice a year every year, caught every virus and stomach bug, and seemed to get sicker and stay sick for much longer than everyone else. But this time I got sick and...didn't get better. I think I ended up being diagnosed with a "mono-like virus," although I never tested positive for anything. And I mean anything. Poor Dr. Staats tested me for every single thing she could think of and I just kept getting worse and worse. My skin turned kind of grey. I was sleeping 18-20 hours a day. I was dizzy and had a headache all the time. Cancer was considered. She worked so, so hard to figure out what was going on with me. I spent more time at that office than I can remember. I do remember her talking to me without my parents once to ask about mental health. This, I think, she handled particularly well. So many times, when a physical cause can't be found, mental causes are turned to and people are passed off to psych. That didn't happen. She took my mental health extremely seriously. And when it became clear to her that the cause of my symptoms wasn't mental, she let it go. I will be forever grateful to her for that.
I have a vivid memory of being shown to an exam room and walking by her office. The door was open a crack and I could just barely see inside. She was sitting at her desk with her head resting in one hand, focussed entirely on the array of reference books spread out in front of her. I knew she was looking for answers for me. I knew on some level that doctors had to look for answers, but I'd never seen it before. It's been nearly 20 years, and although so much of that time is blank, that image is still so clear. She came into the exam room that day and told me that she'd heard back from a colleague (not only was she looking in all those books, she was also talking to colleagues??) who gave her a great idea. She was the first person to ever take my blood pressure lying down, sitting, and standing up. She gave me a referral to my first cardiologist, who diagnosed me with orthostatic hypotension. I still have the first few notes she took of my BP measurements down at 80/46. She was brilliant and dedicated, and I'm pretty sure she saved my life.
Dr. Antonik was only my doctor for two visits. She's an endocrinologist in northern VA, and I never really needed an endocrinologist. She knew that immediately, and she saw me anyway. I was sent to her during the phase that nearly all of us go through, when we're being tested for every possible condition. But this time, I'd been seeing a cardiologist who was not great. This cardiologist was not a great listener. He wanted to take me off of the steroid I'd been on since high school, back when Dr. Staats sent me to a cardiologist in the first place, that keeps my blood pressure up. At that point I'd been on it for about 10 years. I'd experimented with dosing under the care of other cardiologists before, with the same result every time- I decrease the dose (or stop taking it entirely), my blood pressure tanks, my body goes haywire, I go right back to the place I was in high school where I can't even stand up. So this cardiologist insisted that I should have grown out of that condition by now, and this time it would definitely be okay. I assured him that it most certainly would not be okay, and that we have been through this drill enough times before that it is a definite pattern. He would not take my word for it. I wasn't great at standing up for myself yet. So I stopped taking it. And, surprise surprise, the same symptoms came back. I went into my GP, who was trying her best with me but was so overwhelmed, and who had just gotten a new PA. This PA was young and pretty cool, and brought in some out-of-the-box ideas. She knew this particular medication is also used to treat Addison's Disease, which is treated by an endocrinologist. Her thinking was that if I was taking the meds, I was alright, if I wasn't taking the meds, I wasn't alright, so maybe Addison's was a possibility. So off to the endocrinologist I went.
Again, Dr. Antonik immediately knew I didn't need to be there. But instead of being dismissive, she ran tests anyway. She was kind and reassuring. She covered every base that needed covering. After running tests, she called my cell phone personally to give me the results as soon as they came in, after business hours. Like, who does that? And even though the tests indicated what we both knew- I didn't need to be there- she asked me to come in for a followup anyway, just in case I had any other questions or there was anything else we needed to talk about. And do you know what she did at that followup appointment? She pulled up the computer and asked, "Have you heard about Ehlers-Danlos syndrome? I have another patient who has it, and as soon as you came in I thought your case sounded awfully familiar." And instead of just leaving me to do my own research, she pulled up some information, matched my medical history and symptoms with EDS symptoms, and PRINTED OFF CONTACT INFORMATION OF OTHER DOCTORS I COULD SEE. Just. Unbelievable. I almost wished I had some sort of condition that would allow me to keep seeing her just so I could keep her as my doctor. Almost. I walked away from a random doctor that knew immediately that I didn't belong there with what was going to be the diagnosis that would explain a lifetime of symptoms.
And we finally come to the present, Rachel Yaghoubian, PT, DPT, OCS. Rachel has been my physical therapist at Casa Colina in Pomona, CA for more than a year now. And she has changed my life. Physical therapy before now has been a waste of time at best, and actively harmful at worst. There's an issue with EDS where injuries often don't show up on imaging. And we're just sent to PT as a way to either make us someone else's problem or make us shut up. But standard PT isn't designed for bodies with EDS and most physical therapists aren't trained to look for or treat hypermobile patients. There have been times that I've gone in and therapists have seen that, despite injury, my range of motion is great, which in their book means I'm fine, and so they send me home. Then there was the place than had me demonstrate all of my "party tricks" for every employee because they'd never seen anyone like me (that place also scolded me for not being able to stand on one foot on a squishy mat with my eyes closed; I definitely came out of that one injured).
At some point I just stopped going to PT when it was prescribed. It wasn't worth it anymore. I knew I was doing more damage to my body and no one was actually fixing or strengthening anything, much less addressing any problems, mainly because no one really believed I'd been injured in the first place.
This is the first time in 20 years of being a physical therapy patient that I've felt fully safe, confident, and taken care of. My strength has improved so much in the last year, I can't even describe it. And while I'm the one putting in the work with the exercise, none of it would be possible without Rachel. With EDS, PT is a lifelong maintenance routine. We need our muscles to help keep everything in place, and if we don't strengthen them constructively and teach them how to support our bodies, chaos ensues. Our muscles are in a constant state of spasm trying to hold everything together. I'm sure you can imagine how much damage that can cause. It's not sustainable.
Rachel has been guiding me through the Muldowney Protocol, which is an in-depth approach to muscle activation and conditioning. Y'all there's a textbook. I have a multicolored highlighter system. It's incredible. When we get to an exercise that I can't do for whatever reason, she finds a way to modify it so it works for my body. Or we just ditch it altogether and do something else that works the same muscles set or accomplishes the same task. One of the best things about Rachel and the other therapists in the Casa Colina EDS therapy program is they understand that patients are individuals and there is no one-size-fits-all approach. I wish I could describe more clearly how wonderful it is to work with Rachel, specifically. She's so encouraging. I’m fully supported literally and figuratively. When my father was in the hospital and in recovery for a few months, I was beating myself up over not keeping up with my exercises. Did she? No. What did she do? She reminded me that I was still in really good shape, physically, and that I should take a second to look at how far I'd come. If that had happened a year earlier, I'd've collapsed. She told me to give myself a break and to just do what I could, when I could. And she was so right. Beating myself up was just putting more stress on my body and making it more difficult to start up again. And I really had come a long way! I just needed her help to see that.
The other thing about Rachel is that she's extremely passionate about advocacy and education. She and Sarah, the other main EDS physical therapist, have been going out of their way to build the program. They've also been giving lectures on EDS to therapy schools. Rachel has mentioned thinking about getting a program set up for POTS treatment, and modifying the Muldowney Protocol further to include a wider range of topics. She's impressive. When I decided to get into advocacy work, she is the kind of person I hoped to see changing the system. I want to be part of it.
And you know something else? The appointments are fun. I look forward to them. Do you know how cool that is? I used to dread physical therapy so much that I stopped going entirely for years. And now, because of her, I look forward to going to a place that's two hours away from my home every other week, for an hour of physical therapy. And that's a pretty exciting development.