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Tuesday, December 23, 2014

wrongly diagnosed. beautiful though.


A couple of days ago, when I was having a good moment, I curled up on the couch to do a little sewing. Sitting cross-legged and working hoopless may not be an orthodox hand-quilting style, but it works for me. I had a bit of energy then and my spirits were up, so I asked Craig if he could take a photo. I was covered head to toe in thread lint and wearing a frumpy house dress. I was disheveled and still a bit tired. In that quiet moment of making, I felt very beautiful.

I hadn't planned for another medical post in back-to-back succession with the last, but sometimes clear cut things aren't so clear cut. I met with my neurologist for the first time yesterday afternoon, after a particularly bad day. I've picked up a few new eyebrow party tricks and a pretty impressive stutter to go along with my other eclectic symptoms.

Sometimes medical practitioners don't get the answers right on the first go. New symptoms manifest, old ones peter out. Medicine is a logic puzzle, and the answers aren't always obvious. What seemed like a straight-forward case of Ramsay-Hunt Syndrome isn't. We're looking for answers again. I'll have an MRI on Christmas Eve. We'll know more soon.

At the moment, good days almost balance the bad ones. I alternate on odds and evens much like movie sequels. On a good day, I can sit on the couch and do some sewing. On a good day, I feel beautiful.

23 comments:

  1. Hang in there, life gives a jolt every once in awhile.

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  2. thinking of you this holiday...hoping the answers come soon and the healing begins.

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  3. Hi Amy,
    I just watched your videos and read your posts and hope you're doing a lot better and find out soon what's going on with you. I wish you a merry, merry xmas and hope that whatever you have it'll be over soon and you'll be well soon.

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  4. It must be so unsettling to be experiencing this and not have a firm diagnosis. Sending good wishes that soon they'll know what this is and have a course of treatment for you. Take care ~ Jan

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  5. Thinking of you since I am acutely aware of the things they will be looking to eliminate. Remember that each thing they eliminate is one less thing to worry about. I will keep you in my thoughts and prayers.

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  6. I hoping that you get excellent news after the MRI, and send you my best wishes.

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  7. thinking of you often and hoping for good news.

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  8. Hope you get a solid diagnosis soon. Sometimes not knowing is worse. Glad to see you are sewing and you look relaxed and calm. Hoping for the best.

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  9. How fortunate you are to be able to see a neurologist so quickly. Hopefully the MRI will provide answers. It is so good that you have your hand quilting - I find that hand sewing is so very good for the mind and body.The repetitive, rhythmic movement of the needle through the fabric is very relaxing and almost meditative in nature.

    You should feel beautiful even on your bad days because you are beautiful! We only get one body so we should love it! Hang in there Amy!

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  10. Hi Amy! Getting an MRI is the best way to give you a clear diagnosis. Plus, it's not bad for the rest of your body. I'm seeing my neurologist tomorrow and I hope he'll give me a clean bill of health. He discovered I suffered a minor stroke some time ago (couldn't tell me when) when he ordered an MRI. Hang in there Amy! I'll be thinking of you and sending you good vibes. ❤️

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  11. Oh Amy, what a roller coaster this has been - fingers crossed for better news after the MRI. Great idea to get into some hand sewing to stay focused and relaxed while you wait for tests/answers. I'm praying you'll have some good news before Christmas. x x
    P.S. Enquiring minds want to know about the lady on your arm..she's very Dale Arden-esque.

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    1. The tattoo on my arm is a crazy, long story. Before I quilted and sewed, pinball was my escape. I'd spend countless hours playing the silverball, traveling to tournaments and owned a few machines. When I moved to Australia, I sold my pinball machines because I wasn't sure I'd be here long enough to make shipping them worth it. I got the tattoo to remind me of a hobby that brought me so much joy. The girl isn't a specific character as such. She just represents all things pinball - the girl found on the backglass as it were. The rest of the artwork around comes from pinball machines - bumpers, targets, ball locks, rails. It was designed and inked by Darren Brass for Miami Ink, but in the end my story was cutting room floor material.

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  12. Thinking of you at this difficult time. I do hope you have a positive outcome from you upcoming tests. Have a beautiful Christmas.
    With love,
    Anne xx

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  13. You are beautiful, Amy! My thoughts and prayers are with you.

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  14. inspiring..hang in there...your beauty will continue

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  15. Oh no... hope all will turn out ok for you. Speedy recovery!

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  16. Sending you love and prayers for answers.

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  17. Amy, you are truly beautiful. In and out. You make the world a more beautiful place as well, and I, who have benefitted by reading your blog for a couple of years now, wanted to thank you. I wish you a good, steady recovery and that your spirits don't falter. You are lucky to have someone to rely on. All the best for these holidays and 2015.

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  18. How have you been? Been wondering about you and hoping all is well!':)

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  19. Hi Amy - I've been wondering how you've been ever since you posted this entry. Are you any closer to a diagnosis/treatment? If not......have your doctors considered Lyme Disease? It's often misdiagnosed due to poor reliability of the available tests and the variety of symptoms it can produce. But your symptoms and the fact that you spend time outdoors/exploring could be consistent with Lyme Disease. I hope you are well and best of luck!

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You are a rockstar! Thanks so much for your comments!