I am aware that I am less than some people prefer me to be,
but most people are unaware that I am so much more than what they see.
— Douglas Pagels

Tuesday, April 10, 2018

Renal/Endocrinology Clinic 4/9/2018

I'll try to keep this a lot shorter than what I wrote on Facebook.

But first, look at my absolutely adorable smiling Sylveon!

She guarded my car while I was at clinic. :-)

Whatever keeps the sanity intact, folks.

My labs look good. My kidney function is fantastic.

I'm having mild kidney stones again, so we briefly discussed that. I was informed by Dr. P that tomatoes contain a lot of oxalate, and that's bad news because I eat a ton of tomatoes. I honestly can't imagine giving up salsa, but I should consider limiting it. I also need to ditch tea once and for all if I expect to keep the stones at a minimum.

Both the phlebotomist and the nurse asked me to uncross my legs. Apparently, I am doing myself no favors regarding circulation and blood pressure by crossing my legs, and I do it constantly. I am going to have to somehow break the habit.

Dr. C was very, very kind. He thanked me for coming up there again to talk about my rare disease. He asked me several questions to determine if I was all right on a personal level, which I appreciated because I believe his concern was genuine.

He also asked a question I dread: Who brought you up here? Argh.

OK, I know it's risky, but I always try to drive myself. I cannot cope with burdening someone else with the task. It's a 7 hour round trip, sometimes 8, and that doesn't include the appointment, labs, lunch, or whatever. In other words, it's a long day. Since I ditched Airbnb, I'm no longer staying overnight in Jackson, so I drive straight there and straight home. It is hard. Not the driving itself, but simply sitting upright that long. It's painful, and always results in further muscle weakness that requires recovery time after returning home. I'm not putting anyone else on the roads in danger. I know my body. If I'm too weak (see: February), I reschedule. People may judge me for this decision, but I am hell-bent on being as independent as possible. I know it's just an innocent question, but answering it always unnerves me because I have more issues than Sports Illustrated.


He said he wants to bring awareness of Primary Periodic Paralysis (hooray!) and asked if I would come up there to be interviewed about HKPP in front of a team of doctors. I hesitated only because of my immense social anxiety, which I told him about, but I agreed that it was important. Sooooo he said he's going to call me soon to schedule this thing. I'm already scared, ha! But I know I need to help bring awareness of this horrendous systemic disease. I hope to God the nervous gibberish that will inevitably come out of my mouth does someone some good.

I have to say it's touching that my doctor looks beyond my boring test results. I don't take it for granted, and I wish I could teleport all of my HKPP friends to Jackson to see him. I went up there kind of sad, but left in a much better state. Empathy can make all the difference in a patient's life. I wish every doctor in the world understood that.

I'm so thankful mine does.