Three years ago, I had a strange health scare. I developed discoloration on my skin at my joints, followed by edema (swelling) of my legs and feet. I visited my primary care doctor soon after the swelling started, he put me on a basic anti-inflammatory and sent me home unimpressed. I took the anti-inflammatory as prescribed but the condition worsened. I returned to my primary care doctor and he prescribed another anti-inflammatory without so much of a raised eyebrow at my condition. In addition to the swelling I also had some other red flags – blood pressure steadily increasing at every visit, headaches, fatigue. Yes, I was overweight so these things weren’t totally unusual but I was very concerned with the fact that my status quo of physical capabilities was suddenly turned upside down.
I decided the following afternoon to go to urgent care. Something was wrong and I didn’t want to just sit back while I lost my ability to walk. Urgent care took one look at me and said I should go to the emergency room immediately. They were concerned that something life-threatening like a blood clot was the problem, and didn’t want to take any chances. Even though I knew something was wrong, hearing a medical professional say it was an emergency scared the shit out of me. I called my mom in tears in the parking lot, she met me at home and drove me to the ER. They admitted me as soon as they took my blood pressure – it was 200+ over 120 (which is really bad I soon found out). My condition was a mystery to the ER doctors – they ran every test they could think of while they pumped me full of drugs to bring my blood pressure down. At one point all four ER attendings were standing at the foot of my bed, reviewing my chart and scratching their heads.
They released me early the next morning once my blood pressure was reading normally, with medicine in hand and an appointment for a rheumatologist later that day. They didn’t have any answers about the swelling, and so I just had to wait and hope the rheumatologist could come up with something. My mom came back to my house and we tried to get a little sleep before the appointment, then off we went to the next round in mystery illness. My rheumatologist and her staff were amazing. They made me feel comfortable and I knew they were working hard to figure out what was going on. I probably had each test they could think of, ran at least twice. Everything came up negative or inconclusive.
To deal with the swelling, my doctor put me on prednisone. What a terrible drug to have to take (essentially poisoning your body), but it brought the swelling down and I was able to walk normally again. I visited my rheumatologist almost weekly to complete lab work and talk about symptoms. Being the only person in the waiting room under 60 was a bit odd, but my unusual circumstances made me a high priority. The first round of prednisone didn’t finish it off, the swelling came back and since we were no closer to an answer They started me on another round of prednisone. I of course was doing a fair amount of googling symptoms at this point, trying to find something that might put us on track to an answer. The results were scary – everything I read had me thinking I was facing a lifetime of autoimmune disease. At 28.
My doctor kept looking, and I kept taking my prednisone. This course of treatment finished up, and we waited. Waited for the swelling to return. Waited for something else to go wrong. But nothing happened. Just as suddenly and unexplained as it came, so it went. At my final appointment, I could tell my rheumatologist was happy for me but still concerned because she couldn’t tell me what had happened to me. And it became clear to me that was what really drove her – knowing the why about things. I really lucked out – I had a doctor who was still passionate about the why.
This experience taught me a few things:
1) You MUST be your own health advocate. If you feel something is wrong, don’t stop until you get someone that believes you and helps you understand what is happening.
2) Life is short, and should be appreciated as much as you can physically do so. I had several months of limited mobility and the mere possibility of lifetime or terminal illness, and all I kept thinking was how much I had wasted not getting out in the world and taking in every last bit in any form that I could. Physically, mentally, emotionally.
3) It’s never too late to change! I just had my annual physical with my doctor a few weeks ago and thanks to taking up running at the first of the year, I was able to come off one of my high blood pressure medications! And all of my other vitals are outstanding! I could tell my doctor was actually proud of me, for being proactive in my health!