Chiari Is My Unwelcome House Guest

The past week has been a whirlwind. I’ve had my ups and downs and have been a ball of emotions. Last weekend I had to be taken to the ER due extremely intolerable symptoms due to Chiari and since then have had this week to recover at home from such events. Yes, I do take medication for many of my ongoing symptoms but when the medicine doesn’t do what it’s meant to help with, I progressively feel worse, and that’s when I take a trip to the ER. It’s no fun, it’s tiring and unfortunately I’ve been to my local hospitals ER more than I’d like to admit.

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While at the hospital though, I came to thinking about Chiari and what it means to me. I was thinking of what I can compare it to. I had so many nurses and a doctor come in to see me in my room and had no idea what Chiari nor Syringomyelia was. I don’t blame them though, the lack of knowledge and education on such a rare illness is seen too often, especially in the medical field.

I finally narrowed Chiari to this – that unwelcome house guest.

The one that refuses to leave no matter what signals you throw at it.

The one that has no remorse in overstaying their welcome.

The one that doesn’t shy away from being loud.

It has the worst timing!

It doesn’t care what day of the week it is.

It’s there and it isn’t looking like it has a departure date set.

If you have someone close to you that has chronic pain, lives with Chiari Malformation, Syringomyelia or any other illness, the best thing you can do for them is educate yourself on the matter. It’ll mean more to them then you’ll ever know.

Happy Friday,

A-

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Mom Life With Chiari

Living with Chiari 1 Malformation and Syringomyelia since 2013.

36 thoughts on “Chiari Is My Unwelcome House Guest”

  1. My dear, as a healthcare worker, I have a tiny bit of information of patients with Chiari, I had a post-surgery patient. She had surgery to correct it. Debilitating headaches and so much more. So sorry you are dealing with this.

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      2. Thank you so much! I feel at times not sharing sometimes such negative topic, but I know I do well in writing my feelings down. I appreciate your sweet comment. Thank you! Happy Thanksgiving, Hope you have an amazing day. ☺️🙏🏽

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      1. Hmmm….I do think WP has gone wacky! I’ve been missing many who turns out are in fact posting but I’m not getting the notifications. One who has been one of the very first people I’ve followed, showed I was no longer following! I too have been posting although not as regularly as I did last year.
        Last year, just starting out, unsure of what I was doing and what direction my blog would go, I posted everyday, sometimes multiple posts a day.
        Although I posted a lot, it was often just fluff or filler. This year, though I post less frequently, I’m writing fuller, longer posts, discovering my voice and actually liking what I’m writing, much more than before.
        I do need to find my sweet spot in becoming more regular though. 😁
        My biopsies were thankfully negative but the following test ( purely miserable I might add and a terrible thing to do to a person) showed the pressure in the upper esophageal valve was almost 2 1/2 times higher than the maximum amount should be. The specialist wanted to try a blood pressure medication in very low dose as I keep a low BP anyway, for 2 months. His concerned is that they’ve not performed very many of the surgeries ( this concerns me as well. Lol) but it’ll have to be performed in another city too. Ugh. It’s been about 3 weeks and it’s still not helped. I’ve been meaning to write an update but…lazy girl that I am. 🤗

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      2. That’s great, reminds me of the saying, ‘it’s not about the quantity but the quality.’ 😊 Awe, not a lazy girl at all! I’m so glad you let me know, I’ll be praying for you. And definitely write an update! Hope you continue to feel better soon. 🥰🙏🏽

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  3. Oh no, I’m so sorry you’ve had such a rough time with it lately and ended up in A&E (a traumatic experience in itself). You’re absolutely right about lack of knowledge about conditions and actually how much difference it can make to your friend/loved one if you learn a little more about what it is that they’re dealing with. How are you doing at the moment? I really hope you’re about back to your baseline and that you have a restful weekend to continue recuperating  ♥
    Caz xx

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    1. Thank you so much Caz. Yes, doesn’t it make a world of difference?! It does 😊🙌🏽
      I’m ok, the nausea is still coming and going too often than I’d like. But resting does help, so I’ve trying to do that as often as I can. It’s all bizarre, most of my meds are muscle relaxers which in turn make me extremely drowsy. But since I can’t always lay down after taking my medicine, the constant battle is challenging.
      Thank you much for your words, I always appreciate them. 😌🙏🏽 Hope you are doing well.

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