I Know It Doesn't Look Like It....

   
      I know it didn't look like it when I first walked into your 24 hour urgent care clinic, but I was struggling to stay standing.
      I know it didn't look like it when your nurse first came out to greet me and brought me back to take my vitals but every step I was taking felt like another brick was being stacked on top of my chest.
      I know it didn't look like it when you first came in to the exam room but I was trying to keep my eyes open even though the world was spinning faster than I could handle.
      I know it doesn't look like it, but I am struggling. I wouldn't have come here if I wasn't. I wouldn't have come here asking you to stick another needle in my arm and give me yet another bag of fluids. Hoping... praying that this bag of fluids would help me get on top of my symptoms for at least the next couple of days.
     I know it doesn't look like it but I'm at the end of my rope. I've had enough of this and I'm about ready to give up, to throw in the towel and quit fighting.
     I know it doesn't look like I trust in your abilities to understand what I'm going through or that I actually need help. But I do. I just need you to prove to me that you're willing to understand.

     "I know it doesn't look like it..." is how I've started every doctor's appointment recently and it's how I started my last minute trip to urgent care tonight for fluids because the dizziness and weakness has gotten to the point I can no longer handle it. I get it. I look normal, I look like your healthy 21 year old who has nothing wrong with her. But that's why they call it an invisible illness. My POTS got so bad today that there were multiple times I fell to the floor and just decided that trying to get back up wasn't even worth the fight. My heart rate had been so high all day that by 3pm I felt like I had ran a marathon and didn't want to do anything anymore. I was frustrated and fed up that I took myself to the 24 hour urgent care to see if there was anything they could do to help. When they first took my vitals they got a BP of 156/122. I asked if they could retake it because I knew it wasn't right. They rolled their eyes but did retake it. That time my bp was 104/78. My heart rate was 110. Neither of those were considered emergent but after three days of that I'm starting to not be able to handle the dizziness and shortness of breath. When the doctor came in and asked me what was going on I told him that I was dizzy and weak and short of breath. He told me it didn't really look like I was in any sort of distress. So he ordered a urine analysis to see if I was dehydrated and left. He came back and said everything checked out but asked if I still wanted to get a bag of fluids. I said yes.
      They went to move me from the exam room to the infusion room and when I stood up I passed out.. Out cold. They took my bp while I was out and it was 78/56. I TOLD YOU I WASN'T LYING that I was actually struggling. They wheeled me back and started a bag of fluids, and then a second one. We finally got my bp up to 118/80 which I was comfortable enough to go home with.
     The frustrating thing about having an chronic/invisible/rare illness is that even when you're feeling completely shitty and worn down and trying to keep your head above water you still have to be your own advocate. You still have to educate the medical professionals around you to get the help that you need, to get the help that you deserve. The last thing I want to do when I walk in through the ER or urgent care doors is to have to fight with a doctor to get the treatment that I know will help me. In the end it worked out, I was able to get the treatment that I needed and the doctor took some time to ask me questions about what postural orthostatic tachycardia syndrome is and how it affects my day to day life. Hopefully the next time I have to go in or someone else who suffers from this doesn't face the same fight I did. This is why we educate, this is why we advocate for ourselves and others. Keep up the good work warriors we can do it!

With Love,
Elizabeth <3