Two Phrases that a Medical Professional Shouldn’t Combine

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Big Medical Words / Uncategorized

So I hadn’t been to the gynecologist since my diagnosis of POTS.  The reason is that I hadn’t run out of birth control yet.  That’s how they get you to go.  You have your prescription and when it runs out they say that you have to go back to see them to get your prescription refilled.  I don’t know if I’ve mentioned it, but I have endometriosis (confirmed and diagnosed via laparoscopy surgery in 2010-ish I think).  The only way that my endometriosis stays under control is by not really having a period.  So I’m on a birth control right now that is FIFTY dollars a month, which is outrageous, but it also keeps away any period, doesn’t mess with my hormones and personality too much, and also therefore keeps away horrific pain.  So I pay my FIFTY dollars monthly, obviously.

As I was saying, I got to the point of ‘you have no remaining refills for this prescription.  We will contact your provider.’  This of course guarantees a phone call almost instantly from the sweet office girl wanting to get me on the schedule.  UGH.  Ok fine.

Yesterday was my appointment.  I see a very sweet ARNP lady for the yearly stuff and then I saw a different guy (who is an asshole by the way, but also a good surgeon) for my actual surgery and follow-up of that stuff long ago.  The nurse brought me back and asked if there have been any changes to my medications in the last two years.  I laugh.  Enter POTS.

I explain about my life changes in the last two years and POTS.  She is writing furiously.  She gives me my new attire and leaves the room.  I change and wait.  Sweet, sweet ARNP lady enters the room and the first words out of her mouth are, “I’ve never heard of P.O.T.S.”.  This makes me happy because she is being honest and I appreciate honesty from medical professionals.  We discuss and I do my basic speech about my autonomic nervous system.

Here comes the question.  I can sense it.  Here it comes.  “Is this an autoimmune disorder?”  I desperately want to lie.  I look up and calmly respond, “yes”, waiting for the next sentence.  “Have you ever tried the autoimmune protocol diet?”  There it is.  My least favorite conversation ever.  I choose the route of honesty.

Look, here’s the thing.  I’m not opposed to people making  the choices they want to make.  I’ve read about this extensively.  While POTS is technically an autoimmune disorder, it is SO MUCH MORE COMPLICATED.  I’ve read about results over and over and while there can be some small changes, it does not ever eliminate, fix or magically cure POTS.  We aren’t talking about some inflammation here.  We are talking about the entire autonomic nervous system being faulty.  Sure, we can blame gluten for a lot of things, but I don’t think gluten is to blame here.

This is my favorite part of the conversation, the part where we guilt the patient.  “I’m just saying it might be worth it to get your health back and your life back.” That’s a pretty stinking big statement right there.

You’re telling me if I simply give up:

  • oats
  • grain
  • rice
  • wheat
  • cheese
  • yogurt
  • milk
  • sour cream
  • caffeine
  • chocolate
  • nightshades (tomatoes, potatoes, eggplant, etc.)
  • sugar
  • nuts

that I’ll be able to Get my health and my life back, and you’re presenting zero facts or studies to back this up relating to my specific condition.  You’re saying my nervous system will suddenly remember how to do everything if I simply take away the evil PB&J’s I’m consuming.  I just find that a bit hard to swallow (TWSS).

No, I don’t think she means any harm by this and I do think she is trying to help me the best she can.  After all, she doesn’t get any sort of kickback if I do the autoimmune protocol diet.  I think she is honestly using what knowledge she has to try to help, but for me it’s always going to sit wrong to hear these two phrases back to back:

I’VE NEVER HEARD OF POTS

and

IF YOU DO THIS DIET, YOU’LL GET YOUR LIFE AND YOUR HEALTH BACK.

If you haven’t watched this, please do so now. *Disclaimer: I am aware that there are actual health conditions which make people intolerant to gluten and in fact very ill.  This video is not speaking to those actual health issues.*

 

 

8 Comments

  1. I haven’t heard of that diet before, but I was gluten free for five years. And I started back on Sunday, no difference symptom wise. It’s crazy how different people are, in terms of what helps folks. . . Looking at the list, I have eliminated most of these at one time or another. . . Ohhh and I definitely can’t say I would be very loving if a doc told me that about “getting my health and life back”. Eek, so sorry.

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  2. I found out I have Celiac about 2 years before I learned I have POTS, and while I noticed a teeny difference back then, it still wasn’t the magic cure-all some imply it to be. Then again, my POTS is likely caused by my Ehlers-Danlos, so “genetically stretchy collagen” wouldn’t exactly be fixed by eating differently, anyway.

    Being Celiac, though, I hate it when people make a big deal about avoiding gluten for other reasons. I’d eat so much gluten if I could… I don’t care what these people say, GF stuff is never “just as good as” or “better” than the original…

    Liked by 1 person

    • Totally. One of my best friends has to eat gluten free because of a disease and she always says how much she would eat if she could. Not to mention that since it’s trendy and cool it costs 6 times as much as the gluten full option!

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  3. Christy Mooney says

    I don’t always read your posts, but I save the emails. But for some reason tonight I decided to read it. I have had DYSAUTONOMIA/POTS FOR 10 YEARS and I have never been told that it is an autoimmune disorder. So your post blew me away. Thankfully, I have a Dr appt coming up soon & I will discuss this with my doc. Thank you for the info. Also, I wanted to add that I love your wittiness and sense of humor. I love how you incorporate it with important information. You’re a very good writer. Much love from another potsie. Xo

    Liked by 1 person

    • Thanks for sharing your kind words! If I’m making you smile, then it’s worth my time. Yes I’ve heard both about POTS. I’d be interested to hear what your doctor says. ☺

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    • It’s like… you are so lazy. If you’d just eat this then you could ‘get your life back’. Ya… I’m just over here taking up air and being disabled because it’s so fun. Psssh. Deep cleansing breath. Pass the ice cream.

      Liked by 1 person

      • Exactly! Like if there were a possible cure out there we wouldn’t want to try it? News flash, if it were actually “curing” people, don’t you think we’d be all about it? I get that they’re just trying to help, but sometimes I just cannot deal with people.

        Two seconds in, four seconds out. *takes a big bite and passes you the carton*

        Liked by 1 person

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