…That Surpasses Understanding

…That Surpasses Understanding

For the past week or so, something has been happening to me that I can’t explain.

My sleep has been a bit off-kilter, although this isn’t unusual. Since I don’t work anymore, my circadian rhythm somewhat resembles this:

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Anyway, on some days, I’ve found myself awake very early, between 4 and 5 am, unable to sleep anymore. Ok, whatever. Not a big deal.

But once the sun comes up, it starts. A near-skin-tingling anxiety that has me pacing, sitting on my bed rocking back and forth, and punching pillows because I can’t relax. I can’t sit still to read or write. Listening to music doesn’t calm me at all.

The only thing I can think of is that it’s related to how awful I’ve been feeling for the past two weeks. Yesterday was more horrible than most days. But I’ve been dealing with this for seven months now, and it’s really starting to make me crack. My appointment with the POTS neurologist is finally next week after six months of waiting.

But I’m terrified that he won’t be able to help me.

Now, everyone else I’ve talked to who has seen this doctor has had nothing but wonderful things to say about him. He’s brilliant and he won’t stop until he figures out what caused your specific brand of dysautonomia so it can be treated and possibly help you feel better.

But it seems to me that most people have an underlying condition that’s treatable, such as Sjogren’s. Unless we’re completely missing something (hence the reason we’re going to an expert), the cause of my POTS was sequelae to cumulative anesthesia from my three close-together surgeries last year. How do you treat that? Am I permanently damaged?

And my efforts to help myself feel better seem to be losing their effectiveness.

Last week I started recording orthostatic vital signs twice a day to prepare for my appointment. This means I take my pulse and blood pressure laying down (supine) and then stand up and take them again. If the difference between the numbers is greater than 30, one is considered to be orthostatic by whichever number you’re measuring.

So. When the heck did being orthostatic by pulse by 30-50 points every morning, and even still sometimes every evening, after all the hydrating and salting, become my normal?

62 to 96. 66 to 95. 68 to 105. 79 to 116. 69 to 106. 75 to 121. 81 to 135. 78 to 113. You get the picture. And wow, have I felt like trash. Even though I’ve been consuming at least 5 grams of sodium and 6 liters of fluid (that’s all fluids in a day total) every day!

I think my body is becoming resistant. My kidneys have likely adapted to the increased fluid and sodium after six months and are just flushing it all out, so it’s not going into my vasculature where it’s supposed to. Which means I probably need medication to help the fluid stay where it’s supposed to.

But I don’t want any more pills!!! I take almost 40 pills a day as it is. I don’t want any more!

Why has my life turned into this…thing, this train wreck, this dumpster fire, this never ending game of Whack-A-Mole except it’s with chronic illnesses?

So. You can see why I might be having some anxiety, even though I still really can’t explain the sheer degree of anxiety I’m experiencing. Maybe it has nothing to do with my upcoming appointment. But something is causing me to have these episodes in the mornings, where all I want to do is scream and cry and punch things.

Well, today I finally broke. And I did what I should have done when this first started happening last week.

I prayed.

Sobbing on my bed, I begged God to help me. I didn’t know what else to say. Through my tears, just “Lord, help me.” After a moment, my mind cleared a bit. So I asked the Lord for His peace, which transcends and surpasses all understanding, a peace so complete we can’t even comprehend it.

And within ten seconds of uttering these words, “Lord, please give me Your peace that transcends all understanding, I need Your peace, the peace only You can give,” I was completely calm. And I haven’t felt this calm in weeks.

Say what you will. But I had a divine appointment with my Jesus this morning.

“Christ suffered in order that we may know Him. If you are hurting today, may it lead you to know your Savior more deeply than ever before. For those who are in Christ, we can trust that just as His suffering had a holy and glorious purpose, ours does as well.”    Sarah Walton, True Woman blog



12 thoughts on “…That Surpasses Understanding

      1. You name it, I’ve probably tried it lol I was on florinef way back when, but I was getting really bloated (I was 15/16 at the time, so definitely didn’t want that). I think it helped, though! My mom would remember the names of everything better, but there was also a migraine medication that pretty much got rid of them for me. Only have them once in a while now. Currently on two beta blockers and just started some antihistamines. And of course vitamins. I feel like I’ve tried every fatigue/brain fog med under the sun, but every body reacts differently with these things, as I’m sure you know.

        1. I’m so worried about trying Florinef. I already bloat from all the fluids I drink every day! I don’t care as much about it as I would have a year or two ago, but still…Plus I tend to have low-ish potassium and Florinef can cause low potassium. Plus my history of migraines and it can cause migraines…yikes.

          What’s your resting heart rate like? I feel like I would be scared to try a beta blocker because my resting HR is in the low to mid 60s and I really don’t seem to spike much above 130. This all seems so complicated! ?

          1. I have gastroparesis, so I bloat anyway and it just made me feel worse about myself. I know some people don’t bloat that much with it, though!

            60’s to 70’s. I’ll shift my position and it’ll spike up, I’ll eat and it’ll spike up, etc., etc. Unless I’m moving around or going from sitting to standing, standing to sitting, my heart rate doesn’t spike above 90 when I’m laying in bed (which I am 90% of the time lol). The way beta blockers were explained to me was that it’s supposed to regulate everything, not make it lower or higher. I get low blood pressure because of the dehydration and if I’m having a bad motion sickness day, so that’s one of the other reasons I’m on them. They were scary at first, but the way I see it, if I don’t feel right on it, I’ll call my doctor and we’ll figure something else out! He said to give it 6 weeks if I can, though.

  1. Laura:

    We often think of prayer as a last resort, as in, “I’ve done everything else and nothing has worked, so all that’s left is to pray.” That’s our nature as humans, I guess, because we don’t want to admit that we can’t solve anything on our own. But prayer should be our first option. When we go to the Lord, He listens.



    1. I know, Daddy. He reminded me of that today. ?? I don’t know why it’s been so hard for me to pray for the past few weeks, at least to pray for myself. I find it much easier to pray for others because I feel they need it so much more than I do. Not in the sense that I feel like I’m superior or I’m in better control of my problems or anything like that, but because of my nature as a “counselor” type of person. I’d rather help others than myself, if that makes sense. ?

  2. Oh man, I used to have anxiety like that so I know how bad it was. I’m so glad that you prayed and He took it away!

    Let me know if there’s ever anything I can help you to pray about. I’m not always able to keep up with your posts (and am too socially anxious to comment much) but I can pray!

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