Iron Woman

Today was a day I needed. We sat across from Dr. Elizabeth Coon and went over all my results. My sweat test, the prickly one they did before my tilt table test, showed a low amount of sweat on my foot which means *drum roll, please* I have Neuropathic POTS.  She believes the series of back to back colds I had for 3 months this fall caused the Neuropathic POTS (NP). NP symptoms come on quickly. Which is why I could run a 5: 48-minute mile in October and by January I couldn’t (still can’t) stand for more than a couple minutes. So NP is partial sympathetic denervation, especially in the legs.  Basically, a dysfunction of one or more peripheral nerves. Just weird, nerd stuff. But….my hands tremor. As in, if Kevin Bacon were around he’d be all,

My blood pressure rises whenever it so chooses and I can feel my adrenaline coursing through my body. So Dr. Coon said I have crossover symptoms so I technically have both Neuropathic and Hyperadrenergic (pronounced: hyper-adjre-ner-jic) POTS. She thinks that my low ferritin (mine is 8, anything under 50 is low) caused my HyperPOTS.  

None of this matters cause here is the cool part, my buddy Dr. Elizabeth Coon said that if I adhere to everything and aggressively get after it, in a year or a year and a half to two, I could live a somewhat normal life and then just maintain the cardio and diet! HOW GOOD IS GOD?! Like I could go to Disneyland and just make a day of it. I’ll need a recovery day or five but I’ll be able to handle it!

So my current goal is to walk 10 minutes 2 times a day and then work up to 60 minutes somewhere way way way down the road. I also need 10-20 grams of salt a day. Is that a lot of salt, you ask? Well yes dear, the normal human should never exceed 1.5 grams apparently. I’m no mere human though, I’m a Potsie so I can eat as much salt as I want and it isn’t enough. She gave me this amazing list and Kimkim isn’t happy about it. As you can see, my doctor told me to drink hot cocoa, have cake, eat bread, and pancakes. So lots of Olive Garden and IHOP! Maybe this POTS stuff isn’t so bad!

She also prescribed me some additional iron pills to get my ferritin up. You’ll notice the title is “Iron Woman” this is ironic (lol can’t stop, won’t stop) because I don’t have much iron.  I get to take Propanolol, a beta-blocker, 10mg twice a day to start. This will help with my heart rate as well as the constant palpitations. We will start this after we get to Myrtle Beach in case something happens while traveling. Low blood pressure can be an issue with this medication and we don’t want to pass out in an airport. She also recommended Water Bolus Therapy. WBT is when you chug two 8-ounce glasses of water to higher blood pressure whenever feeling sick. This can higher blood pressure as much as 40 points.

We got my 24-hour Holter monitor as well as my 24-hour blood pressure cuff. I’ve got more wires than Iron Man.  The blood pressure cuff goes off every ten minutes. No matter what I am doing at the time, I need to freeze. It’s like playing a game of medical freeze tag all by myself. Yes, on our way out I had to stop in the middle of the hallway and tell the woman behind me to pass on my right because I had to stand still. Such is life. I also always forget that I am allergic to the four little electrode pads for the Holter monitor, so they itch like crazy…

We went to this sick-nasty green granola place and I’d like to blame my nausea on the food. I was ok before we went in there… Anywho. I wanted to be a dork and document some of the excessive wiring. So I put on an off the shoulder top and posed through the nausea so we could pretend that POTS is cute. I know some of you are thinking, “Really? Of course, Mariah has a top like that when going to Mayo” You bet your bottom dollar that yes, yes I did bring a top like that.  I did like walking through the clinic with my little blood pressure satchel because I felt visible. That is something really hard about POTS. If I’m sitting down or walking for 8 minutes or less, I don’t look sick. But my sexy satchel? Everyone who saw me knew I meant business.

So thank you so so much for all your prayers! Basically, I’ll take a year or so, reconditioning my system and hopefully, I will be able to get back to working like a normal 24-year-old!