How My Life Changed in July

If you don’t know me, then you probably don’t understand the title to this. What do I mean by my life changing in July?

To start with, let’s examine what my life was like on my birthday, July 6 and prior to the 8th: I was in Black Mountain, NC. My body adjusts well to mountains. Proof: I ran a mile up a mountain in 9 mins. When I was done, I wasn’t really out of breath. To say that I love Appalachia is an understatement. If it was its own state, I’d move there (oh wait, it already is… they call it West Virginia).

I ran 1.2 (according to a neighbor friend) miles almost every day. I actively played the guitar, piano, and mandolin. I highly enjoyed Appalachian clogging. I absorbed my studies like water. I considered the yard work to be MY territory along with the other responsibilities. I was an active 16yr. old who thoroughly enjoyed being outdoors and my school work (I recognize that enjoying school might be odd to some 🙂 ).

On the night of the 7th of July, I felt fine. My head felt kind of heavy, but it had been rainy and since I had been out in it, I figured I might have a slight cold. So I didn’t think much of it. The next morning was a different feeling though. Very different.

From what I remember, I was woken up and I didn’t feel very well. My mom said I had a slight fever. I felt really tired and didn’t have much energy. Weak, really. I figured that the “cold” had decided to hit, and hard. “May even be the flu” I thought.

I wish.

So after about a week of the same feeling, and with it getting worse, we went to the doctor. I had felt some pain in my neck, and my parents thought it could be meningitis. Doctor said it wasn’t that. So that’s when we went to UNC.

Neurology didn’t know what to think. They could see something was wrong, but they really had no idea what was causing it (I felt like calling K-Love as I was so encouraged by that news) (I use sarcasm when it suits me) (I’m terrorizing English majors by using all these parentheses), which was concerning. So I was then shipped to the Diagnostics folks. There, we got an answer.

After a lot of tests (and UNC now owning about a gallon of my blood), I was told I had POTS: Postural Orthostatic Tachycardia Syndrome.

So here is what my life is like now, on October 19th, as I write this: I have good days and bad days. I went from running 1.2 miles a day to barely getting down my 20 ft. hallway. It’s really hard to focus on my lessons now (thankfully I’m homeschooled, so that helps). I can’t carry beat anymore (that got REALLY messed up for some reason), so music has suffered a lot, which has driven me pretty much insane. Because I’ve pretty near blacked out twice, I’m not allowed outside to do yard work anymore, or outside at all without telling someone where I’m going and having a cell phone. The most I’ve done is sweeping the back porch, which is pretty pathetic compared to cutting down trees. And I’m obviously not clogging.

Something really concerning is that I sometimes can’t walk or move very much. There’s a reason for that, along with the blacking out, but I’ll get to that later.

And while the physical part is annoying, the worst part (besides the music stuff 🙂 ) is mainly the mental stuff. I can’t play music. I can’t study like I used to. As I write this, I don’t remember this morning. Heck, I forget conversations AS I’M HAVING THEM!

Side note, I just remembered that I need to call-back a certain person who I left a message for a week ago and who called me then. But guess what, I won’t remember in an hour. Yep. Something as simple as calling someone back I can’t remember to do.

When I write these posts, it’s because I’m having a moment of sanity. Let me explain: folks who have POTS suffer from this thing called brain fog. Basically, I get really confused and disoriented. I personally feel like my mental capacity diminishes slightly when I have an episode of it. An example of this is that I have completely, totally forgotten where I was twice now. I honestly had no idea who I was or where I was for about 5-10 minutes. I just kind of walked around in a daze. It wasn’t fun. My speech sometimes gets slightly wacky, because letters get mixed up. Example: I’m writing a “new post” currently. If I said it aloud, it might come out “pew nost.”

What causes this? Well, doctors honestly have no idea. Since it’s a syndrome, it’s a collection of separate things, so they’re treating me for as much as they can. Doctors have only known about/recognized POTS for a short time, so not much is known about it.

I am currently on some meds right now though. A medicine to try and keep my heart rate down and my blood pressure up, and a medicine to help with salt retention (I have no idea why this one, something to do with the ANS). This brings me to what they do know about POTS.

Somehow, those with POTS have had their Autonomic Nervous System thrown off balance. This means that everything controlled by the ANS becomes messed up. A theory about the physical/mental problems caused by POTS is lack of blood flow. Here’s why: they think that since the expansion and contraction of the blood vessels is controlled by the ANS, the blood vessels aren’t opening up enough, or sometimes too much, resulting in lack of oxygen to either the muscles or brain. And this can happen when one is sitting, standing, lying down, etc. Any position, really. So in a way, it’s kind of like hypotension (in fact, that’s what the meds are supposed to be treating; that is, the hypotension part of this, since it’s a syndrome).

Many friends have asked how I’m doing. I usually reply that I’m fine. And I really am. I go to UNC for doctors appointments, and I see folks who are in far worse off conditions than I am. So I’m thankful for that. And I’m not going to throw a pity-party for myself because of this. Frankly, that would be selfish and arrogant to do that, and it wouldn’t be fair to my friends or family. Also, God has really been using this. I think that He is teaching me a great deal about patience through this.

In fact, I have been asking God to teach me patience and humility for a while now. Of course, I wasn’t really meaning this! but He is wise and knows what’s best for me.

Really, I view this as more of a trial and a temporary condition than anything else. Temporary in this life? Eh, not so much. My body will adjust by the time I’m in my mid-to-late twenties. But it will still affect me. Notice I said, “adjust.” But in terms that I will live forever in a place where this will be no more? Then yeah, it’s pretty temporary. I mean, come on: I’m going to have a 16 trillionth birthday (and if President Obama is there, I’m gonna grill him on that), and when I do, mark my words that I will look back and say “God really lead me through it there. I learned a lot that I wouldn’t have otherwise learned. Soli Deo Gloria!”

God has really encouraged me with those thoughts. And I’ve been really encouraged by my friends and family who are praying for me. I know He has called me to great things beyond what I can now foresee, and this will simply serve to glorify Him more, then.

Actually, I can say it now: Soli Deo Gloria (Only God’s Glory)!

–noah

2 thoughts on “How My Life Changed in July

  1. Noah, I too have POTS and feel that in spite of the challenges, God has taught me and continues to teach me much through this experience. I have been Blessed with much more perspective and patience than I thought would be possible.

    It has been a deeply humbling experience and I can only be grateful for all that I have learned and continue to learn.

    Thank you for these words that you have shared, they mean much to me, and although I may not know you, I recognize you as a brother on this earth and wish you the best. Continue to fight and focus on the positive. Nothing wrong with bad moments as long as we keep in mind it is, as you mentioned it, all temporary.

    Peace be with you.

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