A frustrating day

It’s St. Patty’s Day!  Manchild and I are a couple of tater lovin’, whiskey drinkin’ Irish kids.  Or at least, partially Irish.  It’s back there somewhere in my euromutt heritage.  I don’t know if that’s where my freckles came from, but expose me to sun and watch what happens.

funny-st-patricke28099s-day-memes

There’s not much food here, so I sent manchild a text earlier asking him to pick up some potatoes, cabbage, butter, and booze so I can make colcannon.  After that initial text, I was having a wicked time staying upright.  My blood pressure was craptastically low.  So low, I couldn’t even get a reading until I was laying down.  My vision blurs and my ears buzz when I sit up, and when I stand up?  Shit starts to go black real quick.  I said nevermind, and to get himself some food and snacks because I didn’t think I’d be able to cook.  He came home with 2 pints of Karamel Sutra ice cream, 2 frozen pizzas, and a crap ton of v8 and Gatorade.  Well then, that works.

I’ve had problems with low blood pressure before, but it seems to be independent of POTS, although it does exacerbate it if they happen at the same time.  It’s wicked annoying.  My BP would tank at the worst of times, like one time I was out grocery shopping and nearly passed out, so I had to sit in the aisle next to my cart until the adrenaline took over.  How embarrassing.  That was the event that lead to my first visit to a cardiologist and my ‘silent’ diagnosis of POTS and orthostatic hypotension over 3 years ago.  I say silent, because no one bothered to tell me.  Those may have been the first clues of a neuropathy, apart from strange sensations in my feet.

Before my second half-assed evaluation by a cardiologist, my blood pressure was okay most of the time.  Rarely did it dip down into no man’s land, and it was partly remedied by loading myself with salt and fluid.  At least enough to take the edge off so I could get stuff done.  Since starting the beta-blocker, even at a very small dose, my bp has gone down the toilet.  I’m seeing more days where I can’t function because my vascular system isn’t responding appropriately.  Tachycardia alone is enough to make me extremely nauseous and give me the shakes, but hypotension on top of it means I quite literally have to drag myself across the floor.

My adrenal function has been under the microscope for over a year now, and while something isn’t quite right, it’s not quite wrong enough for it to be considered adrenal insufficiency.  I guess that comes when my adrenal glands completely shrivel up and die.  I can’t wait!  Until then, I MUST figure out a way to make these problems have less impact.  I have a referral to the acupuncture clinic, and they’ve agreed to see me before they switch facilities.  I don’t know what kind of voodoo they can work on me, but I hope it’s the good kind.  It can’t hurt to try, and the fact that most of my skin is numb helps. 😉

We’re on the hunt for a recumbent bicycle that I can use to recondition my heart.  I was a distance runner before illness slowly started munching away at my fitness level.  I kept going as long as I could, until the anemia made my muscles turn into useless, spastic rocks.  Physical therapy will be a long, exhausting process, and it’ll be a couple of months before it stops feeling like torture, but I HAVE to do it, even if it’s the only thing I do.  Spending too many hours in bed, or sitting on my ass is going to kill me.

Yesterday’s news wasn’t a surprise because I was told right off the bat that AIH was likely.  Even so, it hit me pretty hard.  I wanted to roll myself up into a blanket and live there indefinitely, which I did for most of the day.  Then I put my big girl britches on and searched far and wide about the condition.  I felt a whole hell of a lot better about it afterward.  My positive ANA test does make sense out of all the random bits and pieces that are crapping out, and that’s mildly comforting.  Next up, getting in to see the  Rheumatologist.  I’ve heard great things about them, and with any luck, my expectations will be met or exceeded.  I have a good feeling about things for the first time in a while.  I’ll take it!

Aaaanyhow, Happy St. Patrick’s day!   To all the days here and after, may they be filled with fond memories, happiness, and laughter.

 

11 thoughts on “A frustrating day

  1. Watch out for leprechauns!

    The bicycle idea is a good one. I’m going to be using one as soon as it’s fixed up. I might try swimming too. My poor body needs a little exercise…

    Take care my friend! 🙂

    🌈 🍀 🍫 🐻 🚴

    Liked by 1 person

  2. I forget, WHY are you on a beta blocker? That’s one of the LAST things I would give you. But that’s just because I don’t remember why you’re on it.

    If it’s essential that you take it, one very good thing to take that will help your blood pressure without cranking you (start slow though, if you try it, use half the suggested dose) is ma huang, also known as ephedra or Mormon Tea. When you go to the acupuncture clinic, if that’s what they prescribe, I get a prize. My new rule is that if I make an educated guess and I’m right, I get a prize! I just did it with a friend in England about the time difference, and I was completely accidentally right! So she gave me virtual flowers (lots), cocktails, all sorts of things. So sweet! Therefore I think it good to continue in that direction. I was going to say “vein,” but I’m allergic to those. Well, since you’ve had such a rough time lately, I think you have earned quite a few prizes 🐶🐣🐦🐰🐑🍦🍹🍰🍬🍕🍟🌴🌷🌻

    Liked by 1 person

    • Also forgot to say that any package of ephedra will say don’t take it if you have liver disease. Not all liver disease is the same. However, the rate of metabolism of certain drugs does slow down, especially when taken with other drugs using the same system. So it’s always wise to try a tiny dose. The acupuncture will help to get your liver cleared out and working properly again!

      Liked by 1 person

      • I’m taking propranolol for POTS, and it helps a little. Might have to knock it down to 10mg to see if it still has any benefit without dropping my blood pressure, although the cardiologist said at 20mg, it shouldn’t have much impact on my blood pressure?

        It’s funny you mention ephedra. When I’m stuffed up and have to take Sudafed, I feel about 100x better. I take advantage of it and clean or whatever else I’ve put off doing from the lack of oomph. The aftermath isn’t pretty, so I try to avoid it until my sinuses are about to explode. I also have to admit to taking it when I had only a 24 hour warning of in-laws coming to stay for a few days. 😉

        You deserve all the prizes, cause you’re all the awesome!

        ☃👍💕🎆🎇🎊🎉🎈🎶✨💎🍝🍝🍝🚵🚀☃🌈🌛🚁🍑<– peaches have cracks…heh heh

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        • Oh right. But the inconsistency here, and mind you I don’t have your labs etc, but medical minds like to wander…the inconsistency is that with POTS the tachycardia is inappropriate, and suppressing the heart’s ability to change its rate along with postural changes should help. However, if the person’s arteries are incapable of constricting in response to standing up, then restricting the heart from attempting to make up the difference just makes things worse. Unfortunately, so much of medicine is trial and error. One day we’ll just sequence everyone’s genes at birth (or before!), and we’ll all know what to expect! Except that might not be such a great thing. Never mind. So I hope you and your cardiologist are good friends. And your endocrinologist. Have they checked your renin-angiotensin converting enzyme levels? Thinking about adrenal issues. Gee whiz, you’re helping me get my autoimmune thinking cap back on. Wish it wasn’t so.

          Liked by 1 person

          • I watched a very long video on POTS at the dysautonomia website, and basically what I gathered is that we’re fucked. Haha. Exercise will help, but the process is going to suck big time. That’s why I’m looking to do seated cardio in case I do pass out, I won’t have as far to fall.

            I looked, and I see the two as separate tests. ACE (Angiotensin Converting Enzyme, 54 U/L, 14-82 range) & Renin (Renin, 8.24 ng/mL/hr, no reference range listed). Is the one you mentioned its own specific test?

            My adrenals are “weird”. One of my internists said it. I’ve had low AM cortisol several times (below 4), and they’re like “ooo we know what’s wrong with you! you have adrenal insufficiency!” Then they do the stim test, and the shit works just fine with the synthetic acth. My acth was low once, then right in the bottom of the range another time, no pitiuary tumor, at least nothing they can see, so they say “nevermind, you’re fine. Here’s another psychiatrist to talk about your ‘fatigue’ with”

            I did have a positive histoplasmosis test, but I think everyone who has lived in the midwest does. I went to infectious diseases to see a guy about that, and he was supposed to coordinate with GI when I had my colonoscopy so they could play with a biopsy for their own purposes, but of course that didn’t happen because I can’t babysit people after they give me propofol. And now I’m rambling. I think this happens when it gets late. 🙂

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            • Oh cool! I haven’t downloaded it yet because my phone is on its last legs. Hopefully I’ll get a new one tomorrow (today really….woke up feeling hot, temperature in the 50’s in the van…so as soon as I get signed up I’ll let you know and we shall see! Is Johnna signed up yet?

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              • Hot at 50 degrees? Good grief, are you catching the plague?

                I’m not sure if she has. I looked at zynga’s website and she can play through Facebook. I got spam-blocked because WordPress hates me, so I can’t comment on stuff other than my own, otherwise I’d harass her about it a little more. 😉

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