EmPOWERThePATIENTS Foundation advocates, educates and provides community support for chronic and rare disease patients.
To fund the scientific development and root cause of chronic and rare disease while becoming the number one resource and community for such patients.
Hello! My name is Emily and I so happy you have found us! If you're visiting my page, you're either a fellow Spoonie, a family member or friend of one, or a healthcare professional hopefully trying to learn how you can help advocate with us. Either way, we are all here for the same thing - We need better from the healthcare industry and the meantime, and we need to support each other. I have seen so many frustrating and painful things on my journey, and I just felt that I couldn't sit on the sidelines anymore. I had to do something. I decided that if going out of my comfort zone could benefit others, even if it meant for just one second another spoonie didn't feel alone, it was something that I was willing to do. So, this is where the story really begins…
One typical Tuesday afternoon I was running through Atlanta airport when my heart started pounding out of my chest. I was in great shape as I rode and trained horses at an international level so my little airport run had nothing to do with it. I knew something was really wrong, so thanks to modern technology I took out my smartphone which had a heartrate monitor on it. My BPM was 145 (for reference the average for a woman my age was 78-82). I called my doctor because I was scared to fly like that, after he asked me a few questions and told me to get on the plane and fly home – so I did.
Thankfully I made it, but the symptoms got worse and my heart continued fluttering all over the place. When I would sit still it seemed to be relatively OK, but as soon as I would even walk or do any sort of physical anything, it would go crazy again. The morning after I returned home, I went straight to my general practitioner. I remember so clearly; he hooked me up to an EKG and said “Sheesh – if you were 80 years old I’d be worried you were having an aneurism, but thankfully you’re young so we’ll get you in with a cardiologist but you can go on your trip first!” I was supposed to leave again the next day for a 3-day event. I went back to work and this overwhelming sense of anxiety came over me. It was something like I’ve never felt before, and I almost couldn’t control it. My heart started skipping beats all over the place, my hands were shaking – I thought, “That’s it!” and I called the doctor back and told them they had to see me again. The receptionist told me the doctor was too busy but I could see the PA so I drove right back over.
When I arrived, Patty, the PA asked me a bunch of questions almost like she was ready to diagnose me with something. “How long have your hands been tremoring? Have you noticed any weight changes? Has your hair been falling out? What did you eat the last few days?” I told her my hands were shaking the last few days, I had lost some weight, although I was already pretty skinny and fit as a pro athlete, and I felt like I was always shedding hair – but it was so long it wasn’t like it was falling out in chunks or anything. She decided to send me to the hospital for “stat” bloodwork and told me she would call me in a couple of hours to let me know if I could fly. I went home and started getting everything ready just in case, and all of the sudden I saw I have a voicemail from Patty. When I listened, it said “Hi Emily, it’s Patty. I usually wouldn’t leave a message like this but I need to stop you from getting on the plane. Your bloodwork came back and you have severe Graves Disease. The levels are off the chart and you need to get in with an endocrinologist immediately. Call me back so we can go over everything. I’ll be here for another fifteen minutes, or back in the morning.” Well I’m sure you can figure out I missed her that evening as I got the message at 5:30p.m., but Graves Disease? Wth was that? I had not choice but to turn to google, and learned it was an overactive autoimmune thyroid disorder. I’d never heard of a thyroid, so I went down a deep rabbit whole that night.
I called Patty the next morning and she scheduled me with the endocrinologist who put me on Methimazole, or for me, the devil medication. It’s supposed to suppress your thyroid hormone. In theory, this would balance my thyroid levels and get everything back under control. Well, if you can picture a graph in your head and start with the line as high as it can go one side and then drop it to as low as it can go on the other, that’s what they did to me and my thyroid levels with the methimazole. They completely crashed my thyroid levels and flipped it so I was now hypothyroid, and like the walking dead. I was in SO much pain I couldn’t even sit up on my own, and my mother had to come put a pillow behind me and physically sit me up. Also, for some reason, I couldn’t pull my arm away from my body. It was so bad we went to the emergency room because of course, it had to be on a Saturday. The doctor wanted to diagnose me with a pulled muscle in my neck and put me on Xanax for anxiety and give me Valium for the muscle. Please read that again. I was already diagnosed, and explained what happened with the medication, and instead of checking my blood and taking me off of the medicine, he told me the pain in my neck was a pulled muscle and the fast heartbeat was anxiety and wrote a prescriptions for Xanax and Valium.
This my friends, was the start of EVERYTHING I saw wrong with healthcare. I of course lost it right there “Excuse me? I’ve had horses roll over me and basically shatter my body, I know the difference between a pulled muscle. Can you please stop gaslighting me and perhaps take my blood?” He wasn’t thrilled with me but he did take my blood and see that I was being overdosed on the methimazole and completely took me off it. My thyroid also ended up being so swollen that it was pressing on a nerve which was causing the pain and why I couldn't move my arm. Well, two days later I bounced back into severe hyperthyroid levels again, which triggered Thyroid Storm, and off to the surgeon I went to have my thyroid removed.
I could say a lot about what they could have / would have / should have done and whether or not I really needed to have my thyroid removed, but at the end of the day it happened. I did wake up from the surgery feeling like myself again for the first time in 7 months, and that lasted for about a week until all of the symptoms came back. It was just in time for my follow up with the surgeon, who told me my levels looked great and I either have a heart problem now, or a SUPER rare endocrine tumor that’s so rare it’s not really worth discussing. He referred me to the cardiologist (again) and I went the next day. He told me I definitely did not have any heart issues and to go get tested for the tumor. My endocrinologist wouldn’t test me for it because "it’s too rare." I found another endo in the area and waited two months to get an appointment. When I finally saw her, she said the same thing. Four months later, I was able to see a third endocrinologist who was willing to test me for the tumor. There are a series of tests, but you start with blood work and a 24/hr urine collection which was especially fun. Every time you pee you have to collect it for 24 hours. If that’s positive, "then you go for an MRI" he told me. Well sure enough, both the blood work and the urine came back positive. I was so shocked and mad – I had so many emotions because I basically waited over six months just to get this test and who knows what was growing inside me and how fast. At this point I just wanted the best doctors, no disrespect to the local one who finally tested me – and even he told me he would do the test but if it was positive, he wouldn’t be the person to treat it. So, I called Cleveland Clinic Florida and explained the situation. I told them I didn’t care which doctor I saw in the department, I just needed an appointment ASAP. This pheochromocytoma is a one in one-million rare tumor and everything I read was extremely intense and scary. They were able to see me within a week, and the MRI was ordered and then confirmed a nodule. The third test is an MIBG scan which is like a glorified PET scan, and that came back negative. Whew! I was in the clear!... so I thought. When I went for the follow-up, the doctor explained these can take years to diagnose because they can be too small to pick-up on the MIBG. Because the surgery is so risky, you have to wait until they are large enough to show on MIBG. This was a lot to take in. Basically, she was telling me that I have to wait until the tumor grows bigger and gets worse (sounds comforting) and that every few months I was going to have to re-test until they could 100% confirm. However, there are things that trigger tumors like these. One is anesthesia, which includes Novocain if you even need to see the dentist, let alone have any other type of surgery. Keep that in mind for later in this story.
The “pheo” as they call it for short, was just going to be monitored and I essentially needed to make lifestyle changes to deal with the rapid heartbeat and other symptoms. I couldn’t workout (or ride) because it would send me over the edge and I’d black out. But soon I started blacking out all the time. More and more, and crashing weight. My hair was falling out and I was freezing all of the time. I went to the doctor to make sure my thyroid levels were ok because I have to take replacement hormone for the rest of my life, but everything was fine there. I was sent from department to department at the hospital and no one could figure out what was wrong. I was white as a ghost, and I weighed about 80 pounds – it was clear it was not in my head, as much as some of these doctors love to make you feel that way. After seeing nine different doctors, finally, one who I will respect forever said “Emily – It’s obvious something is really wrong. You’re blacking out, your bloodwork is all over the place… I see it. You’re validated. But I don’t know what to do for you. I want to send you to Mayo Clinic in Rochester, the Mecca. So, I got on a plane and off I went.
Walking into Mayo was like nothing I’d ever seen. For those of you reading this who might be patients seeking help, I HIGHLY recommend it. It’s an entirely different world, where patient care truly is their number one priority – and it shows. From the second you walk in and the volunteers are there to assist, or the gentleman is playing the piano in the lobby to calm your nerves, everything is just so serene. They ask if you want a warm blanket every time they take you anywhere, and if you're a patient this is like heaven on earth because you're always freezing when you go back in hospitals. Anyway, I think I was there a total of 30 minutes, then one hour after bloodwork when they called me back in to tell me I had leukemia. "WHAT?!". How many things can one person have in a lifetime. But at the same time, I was SO relieved to know I finally had a diagnosis and could actually move forward with a treatment plan. It’s really sad when you’re actually excited to hear you have cancer just because you can finally move forward.
Today, I am still battling leukemia and waiting for the pheo confirmation. The leukemia and chemo that I’ve had to undergo because of it has destroyed so much of the bone in my face, that most of the bones have been replaced with metal. I haven’t had whole food since October 2021 because most of the surgeries were through my mouth in order to keep my face looking like me. That being said, I do feel like I’ve had a face transplant which takes a large mental toll as a young (ish haha) woman. It’s something I struggle with constantly and have to work through every day. If you remember I mentioned the pheo is triggered by anesthesia, so I’ve had tens of surgeries without – and the local anesthetic they can use as a replacement doesn’t work at all, trust me! I feel e.v.e.r.y.t.h.i.n.g when they are drilling into my face. It’s been extremely traumatic.
If you’ve made it this far, whew! Thank you haha. It’s important you know the full scope of what I gone through to really understand the things I’m about to tell you that I witnessed, and why EmPOWERThePATIENTS. Also why you can feel save to reach out to me if you ever need someone to talk to, and I truly mean that.
Over the dozens of times I was sitting in the hospital, I saw the severity of the healthcare crisis. Due to the acute swelling of my thyroid, my neck was popped out and pressing on a nerve so bad I could barely move, and all the doctor wanted to do was tell me I had a pulled a muscle and write prescriptions for Xanax and Valium. I watched doctors treat thyroid patients like mental patients – literally diagnosing them bipolar or with depression and no mention or even testing for thyroid. On the patient's way out, I’d say something to them because it sounded all too familiar and give them my number because I felt so bad. Sure enough, I’d receive “your were right!” texts a week later. I’d know because they’d have the textbook butterfly shape sticking out of their neck like I did. I wouldn’t just guess at something like this. It made me question if anxiety and depression were really side effects of these illnesses or if they were secondary to how we were being treated and/or medicated. Even I was getting anxiety just watching it. It’s not right and something needs to be done. Another example I saw was adderall given for brainfog. Well I can tell you that I have been prescribed adderall for ADHD as I had extensive testing from age 8, and I also had severe brainfog. The adderall did nothing for it - they are two TOTALLY different things and children't should not be being prescribed adderall for brainfog. This still happens today.
It is going to be up to us, the patients, to take a stand against healthcare and stop this gaslighting. Is it uncomfortable? Absolutely. But too many people listen to everything a doctor tells them just because they are a doctor. Doctors are human too and ALL humans make mistakes.
When I was first diagnosed, I didn’t know if I was ready to let people know and that’s when I started the Empower Instagram account. It all started with the search of the #thyroid hashtag. Then I found there was/is an entire chronic illness community on the platform. I started posting my story and was overwhelmed by the comments and amount of people thanking me for sharing because they felt they could relate. If you are suffering from chronic illness or rare disease and need someone to talk to, this is where the power of social media is a positive. If you feel you're comfortable enough to share your story, please share! Your just might save a life.
We must use our voices, and we must be strong. I make a promise to you, and to every Warrior that I will do anything and everything in my power to make a difference, but I am only one voice. I need you to join me. Please comment your thoughts and ideas on my posts or send me direct messages if you’re more comfortable. The more of us there are, the further we will go.
WE ARE WARRIORS. WE ARE UNITED. AND WE WILL SUCCEED. Help me spread this movement by using the hashtag #EmPOWERThePATIENTS.
And most importantly – PLEASE feel free to reach out to me no matter what time, because I rarely sleep haha. I will ALWAYS respond, personally, to your DMs. There is no one else behind the Instagram account except myself. Stay strong, my friend.
IG - @empower_hart
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