Update: Life Is Life

So…

Let’s go over the last two months of my life or so. This isn’t really in any exact order.

Um, I had the tilt-table test for POTS at Duke about a month and a half ago. Doctor Kanter said it’s definitely POTS, a form of Dysautonomia. I’ve written about my battle with this illness several times now. Go check out those posts. So, July 4th weekend, we went to a medical conference in the DC area. The first ever Dysautonomia International conference. We’ll be having another conference next year.

We planned to go to DC and walk around that Tuesday, but unfortunately because of the threat of rain, that didn’t happen. Oh well. We definitely plan to go back and sight-see.

I’ve been getting out more. For example, I went to the wedding of the oldest son of dear family friends. Guys, that was literally the sweetest thing I’ve ever seen. I’ll even admit, I shed a tear or two during the ceremony. Stephen and Maria, we totally wish you the best and will always be praying for you.

Speaking of Stephen and getting out more, I did a play the third week of July! Anne of Avonlea, put on by Legacy Productions, was performed Friday the 26th at 7:00 pm at New Horizon Church in Hillsborough. I had the role of Uncle Abe Andrews. The only apprehension I had about it was memorization, and then possibly passing out on stage. But it all went well, and was super awesome! I’m glad I was able to do it, and I look forward to doing things like that again.

I also was able to go to the performance of Les Miserables the next week and see some friends who did that. It was great, and they did wonderfully. Oh, and I’ve totally fallen for Les Mis… For example, as I write this, I’m listening to the Les Mis soundtrack (youtube; don’t have the actual CD yet).

Bottom line, I’m taking my life back from POTS. I’m not content to keep sitting around praying and seeing doctors and hoping it’ll get better. I need to get active anyway, or it won’t help. And I really want to start seeing my friends again.

Friends… wow. That’s something that has really changed. Since I got sick, my friend base has largely changed. I don’t think many of my old friends, who I still talk to on occasion but not as much as I used to, meant it. Mostly they were my youth group and friends from clogging. But really only the ones who I interacted with the most from Providence and other homeschooling activities are the ones who have really stuck around. Even more amazing is that some who I didn’t really consider myself close to at first, have now become super-close. And what’s super awesome is that even though some of them don’t entirely understand POTS, they know something is wrong with my body, and so they’re here for me.

I think most of my old friends just kinda didn’t understand why I haven’t been around as much all of a sudden, and so just kinda went on with their lives. It kinda hurts that only a few actually asked if I was okay and checked up on me, but eh. God has definitely blessed me with so many other, just as (and some better, to be honest) awesome friends, who have proven themselves.

It’s just really interesting. People I thought I was close to, I apparently wasn’t that close to. People who I thought I wasn’t very close to, are the ones who have stuck around in support and have become my best friends.

Oh, that also brings me to church. My family and I have received over 10 different invites to go to Chapel Hill Bible Church recently. I’ve specifically gotten 6 of them to go to their youth group, which I’ve decided to check out this coming Sunday night, if all goes well. I mean, I’m not blowing off the FBC youth group or anything, it’s just that I haven’t been able to go, either by health or circumstance, in almost a year. Most of those old friends are from Planted, as well. It’s just… too much time and separation. They’ve reached out occasionally, but it’s just kinda disappointing that there was never really a consistent effort. But hey, I’ve forgiven them. And along with some theological and other relational differences that have shown up recently, I honestly just think that it’s best to move on. I’m going with peace, unless a fight is picked. Then, I will stand by my friends and those who have stood by me.

I am a follower of Christ and His Church, but not any particular church. I am a follow of Jesus Christ, and not John Calvin. My loyalties are to the Kingdom first, and a church or doctrine second.

Like I said, I still talk with them occasionally. But I think God is opening a new season in life for me, and I’m ready to move forward with that; I’m ready to see what God has in store for my future, and I just don’t think it’s at FBC other than occasionally.

So what else… hmm…

Well, my niece Autumn is four months old now!!! She’s so adorable and cute! She’s just a precious little gift from the Lord to our family. 🙂 Folks, babies are a blessing. Never forget that. She’s a lot of work, and she’s revealed a lot of stress, anger, and hurt in our family that we’re starting to work on, but overall it’s totally worth it.

Oh yeah, I’ll be repeating this year in school. Yeah, not the best news. But I plan to start working at it with a renewed vigor, and a lot of prayer. I need to pace myself, and take into account that I’m GOING to have bad days, like it or not, when I just can’t study. But pacing myself is the key.

Also, romance is weird. Seriously. God acts in strange ways, and I don’t totally understand them, but I’ll just trust Him and move forward bold and confident, taking every step with obedience. Life is just… complicated. But I’ll tell you what, I actually think I prefer friendship over romance at the moment anyway. Really. It’s just weird. Yeah, I know. It makes no sense how one would prefer friendship over romance, but honestly I think I’ve been allowed to see the wisdom in it for myself, now. I’ve always thought of courtship from a logical perspective, but now I think I see God’s hand in it…

Well, I think that’s about it for now. I was suprised at the Prop8 decision, and was elated at the Zimmerman acquittal. Oh, and I’m quite tired of Democrats and Republicans alike. And that’s about it for politics.

I guess I’ll write later!

Oh, and don’t forget to take a look at my friend Holly’s blog about her educational travels in Cape Town, South Africa! Praying for you, girl! You’ll do great! 🙂

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2 thoughts on “Update: Life Is Life

    • Hi Paul,

      First off, thanks for your concern. 🙂

      Actually, I have heard of the exercise program, and that is something Doctor Canter would like to get me on. There are some logistical details we still have to hammer out, but it is likely something I will end up doing by the end of the year.

      But I do want to address some parts of that article that were definitely faulty. First, POTS is primarily a neurological condition that/ affects/ the cardiovascular system, but not a cardiovascular condition itself.

      It arises from an injury to the autonomic nervous system. What happens is that each individual neuron, specifically the cell body, is damaged. This can be caused by other means, but is usually the result of an autoimmune attack. For example, studies that have been done with patients who had Mono have shown that the immune system overreacted during their sick-time, and actually would attack the neurons, mistaking them for Mono. (This is a theory we are beginning to think might have happened to me.)

      What then happens is that all the information coming into the cell from the dendrites and exiting the cell via the axons is jumbled into a large mess. This lack of communication between cells isn’t good on it’s own, let alone among damaged cells! Thus, the electrical signals do not flow properly or normally, leading to all the symptoms of POTS: high heart rate, hypo/hypertension, muscle weakness, etc. I imagine you can see the chaos that ensues as the cells are no longer working together, but rather on their own, and quite faultily at that! I’ll explain a little later how the exercise program helps with that.

      There were also several absolutely wrong things in this article: first, NO POTS patients have, “small hearts.” That is simply not true. We are regular people whose ANS’ have been damaged, as I explained above. Secondly (but related), it is not known as the “grinch syndrome.” This is the first time I’ve heard it called that. That idea stems from point one, which I spent most of this comment refuting. Third, exercise on its own helps only a very small percentage of patients, however, mostly young adults or younger.

      Any good doctor will tell you that medicine alone cannot cure a chronic illness. But it does have its place in helping the body to readjust. You see, most POTS patients’ bodies will readjust and right themselves (for the most part; POTS will stay with one all his or her life) within 10-20 years of falling ill.

      So eventually, the body should be able to take over those functions on its own, however, there may occasionally remain the need for medication to be taken, but most definitely it will only have to be taken in much smaller amounts than before! 🙂

      The benefit of the exercise program is that it helps to retrain the nervous /system/ to act again as exactly that: a system. But on its own, there is a likely chance of failure and relapse (something the article, I noticed, didn’t mention). Hence, the need for helping medication.

      The treatment for POTS is more and more looking like just having to wait it out, while working with a team of medicine and exercise to speed up the process.

      Again, thanks for the concern and posting the link! Have a blessed day. 🙂

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