September is Chiari Malformation Awareness Month
448 sats \ 7 comments \ @Cje95 4 Sep ideasfromtheedge
As I have written about previously in my ongoing series of navigating life with chronic illnesses (don't worry I am working on the next post as we speak) on of the conditions I have is Chiari. In light of it being awareness month I wanted to share what it is and what it does!
https://m.stacker.news/49779
Noe this is only one of the numerous things I have wrong with me but this is the one we discovered first that set me out on the health journey I am on now! Feel free to ask any questions I'm super open about this stuff lol!
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10 sats \ 1 reply \ @cryotosensei 4 Sep
You have triumphed through so much! Strength n courage
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0 sats \ 0 replies \ @Cje95 OP 4 Sep
Thank you! I try my best and crypto has been a place that the condition has lead me as I have recovered from surgeries and just bad days associated with it!
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10 sats \ 2 replies \ @WeAreAllSatoshi 4 Sep
My wife has this. It’s hugely affected her life. Crazy stuff.
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0 sats \ 1 reply \ @Cje95 OP 4 Sep
No way!!! Did she get the decompression surgery?? I have recently come across some people who haven't and just deal with the symptoms which I don't really understand tbh...
By any chance does she have EDS and POTS as well? All the people I know with Chiari have at least those two conditions and various others
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10 sats \ 0 replies \ @WeAreAllSatoshi 4 Sep
Yes she has had the surgery. Definitely helped out quite a bit.
Unaware of the other conditions, so I’m not sure
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10 sats \ 1 reply \ @grayruby 4 Sep
How does your condition affect your work life?
Also how has your work life affected your condition?
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71 sats \ 0 replies \ @Cje95 OP 4 Sep
So typically with Chiari Malformation you get blessed with additional (comorbid) conditions which can make figuring out what is Chiari vs the other issues a bit of a mess.
That being said easily the biggest issue I struggle with a storms/barometric pressure changes. My body just sucks at handling it and that leads to off-the-scales headaches, vision issues, and concentration issues. I have a medication i can take to help prevent the headache but if it doesn't work than I'm SOL and either just try and ride it out or take prescription painkillers.
Since I can often anticipate or see the issue coming I can prepare for it and lessen my load at work as well as take the med. If it is just a crazy busy time at work or the weather changes earlier than expected it will depend. Sometimes I can be completely worthless and just straight up unable to function but other times I can push through it and stay busy.
My bosses are all aware of this so that helps as well. I've worked for the Committee I work for for over 2 and a half years getting close to 3 now so they are aware of the ranges of functionality and depending on how I'm functioning what they can expect.
Work caused issues would tend to just be busy and missing a storm system or pressure change but like most things stress as well.
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