Chronic Musings · Uncategorized

A Jaw Update & Call to Arms (Or Thumbs)

I’ve been meaning to write this post for about a week, but I hadn’t gotten round to it until now! I’ll start off by saying that the Sewing Weekender was just so amazingly rad – I’m currently rendering the video (as I’m writing, so it’ll probably be on YouTube by the time it’s posted) if it’s been successfully uploaded, I’ll link the video here so that you can watch it!

A note: It says that it has an hour left of uploading as of now (5:00pm in the UK) but I’ll add the link to the post when it’s here!

In other news, lots of people have been asking what’s going on in regards to my jaw, and I thought updating everyone at once in a blog post would be a good plan! So that’s what’ll be going on here. Of course, there’s no need for you to read it if you’re only here for the sewing – feel free to click on the Sewing Weekender video instead!

I’ve been having many an appointment recently, and around a week after my MRI (which I think I mentioned in my last Chronicles of Illness post) I had an appointment in Norwich to get the results. I was really seeing the big cheese in Norwich, and I’d been told by everyone in oral surgery that he’d know what to do – there are only two oral surgery departments in the UK specialised enough to deal with EDS jaw problems, and this fellow is one of them.

So of course, I was very nervous about what the outcome would be. I’ve been dealing with this really acute jaw pain and around 50 jaw dislocations (full dislocations, not just a pop or anything!) a day since March, so all of my hopes were pinned on him!

He was super thorough, and then went to look at my MRI – he’s just so snazzy that he could see the problem right away (I totally couldn’t, all I could see was my ear but I guess that’s why I’m not a doctor) and said that I needed surgery within the next two weeks to prevent any further – really quite considerable by the sounds of it – damage.

I’m not entirely sure what the problem is, there was a dinosaur poster on the wall that I was looking at and I was also tired out from the journey, so I let dad do the listening while I nodded along but was really looking at the aforementioned poster. All I know is that I’m having surgeryΒ this Friday –Β the 11th of August, and that my jaw will then be fully wired shut for 3-6 weeks after the surgery.

So that’s all been a bit hectic! I had a pre-op assessment last week where the anesthetist said she could hear a possible little funky rhythm in my heart, so wanted me to get a scan of that to be safe, I saw pharmacists about getting my tablets in patch or liquid form (because tablets won’t fit when my jaw is wired shut) and then had a heart scan this morning – so I’ve been going a bit non-stop! I know that I still should be finding the time to reply to all of you lovelies in the comments and on my email, but that’s been the reason I’ve been a bit behind.

I really want to do some more Chronicles of Illness posts, more about dealing with them rather than my personal health updates, because at the Sewing Weekender quite a few people came up to me and said that they were finding them helpful with their own conditions or understanding those with disabilities. It’s been something I’ve been thinking about, so that really was so wonderful to hear!

The call to arms (thumbs – I need you to type really) mentioned in the title of this post is me asking you to please potentially do this survey – linked below Β – I want to focus my blog more (which I’ll talk about more in my next post) but need you to help! I want to find out what you want to know about caring for your clothes, and in return, I’ll send you an email link to join the private Facebook group on clothing care!


This is what the survey will look like:

(please only click that link above, the image isn’t hyperlinked)


8 thoughts on “A Jaw Update & Call to Arms (Or Thumbs)

  1. Oh my dear I will definitely be praying for you on Friday and as you recover. I do hope this takes care of the problem for you. You are an inspiration to many dealing with pain/illness. And I really enjoy your sewing posts too 😊


  2. All my best wishes for a successful operation and recovery. Remember lots of people are wishing you well and thinking of you. I look forward to knowing how it all goes with the operation and your makes….on your own time, of course! I really enjoy all your posts and videos. You are an amazing person on so many levels. Go Harriet! xx


  3. I hope everything goes well for you! Will be you better when school starts? I imagine that orientations would be even less fun than usual with a wired jaw.


  4. Sending hugs and prayers across the pond Harriet! Will be thinking of you on Friday and sending you hugs. Yes, please keep us updated when you are feeling better. Love ya!!:)


  5. Sorry…..also wanted to say “Congrats” on being in the Suzy issue, I have not received my copy yet. Looking forward to this issue!!! πŸ™‚


  6. Harriet many happy thought and prayers for you during this time. Good luck on your surgery Friday. You have such a good attitude and outlook, quality of life depends more on how you react rather than what happens to you most of the time. You are such a sweetie and I enjoy you sharing your life. Hope you don’t lose more weight, you might blow away. Lol


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