"Suffering the Slings and Arrows of Outrageous Fortune"

Baby Steps

So, it’s been a few days since I have written anything. Still mostly the same – severe headache and neck pain, sensitivity to light and sound, nausea, dizziness, etc. The prednisone doesn’t seem to be doing much. She has a nasty cold and it is no fun to have to sneeze and cough and blow your nose with the cranial instability/chiari or whatever is going on. Poor kid is miserable.

However, there is one little bit of improvement that I am pretty happy about. (When I think about it, it is pretty sad that I would get happy about this particular thing, but such is my life!) When we first got the cervical collar, Em had it on for about 10 seconds and couldn’t tolerate it at all. Too painful, made everything worse and she refused to even try it again. I was discouraged because I really thought it would help her…

Fast forward a few days… The last 2 nights, Em has requested the collar. The first night she wore it for a couple hours. Last night, she wore it all night!!! 10 whole hours. And slept well with it on. She has also put it on during the day for a few minutes here and there. So, at least the collar has a chance to help. With any luck, it will help minimize her headache when she wakes up. If it helps her sleep, that would be awesome. If it eases her headache, that would be beyond awesome.

On the downside, I understand that her neck/head must be extremely painful for her to willingly wear the collar. It has to be bad for her to wear something she loathes. I am really proud of her for giving it a chance to help and toughing it out. Unfortunately, I think she has some unpleasant times coming and she is going to need every bit of grit that she has. She seems to have been given a healthy dose of it, so I know she will make it through whatever lies ahead.

We also got her Tramadol switched over to pills. She has been taking it at night and I think it is going to help. Once she gets off the prednisone, we will be able to see what the flexeril and tramadol are actually doing but I think it is a good thing. I hope to get her taking the tramadol during the day – it could have a big effect on her daily pain levels. She deserves some pain relief and, thanks to Dr. Tinkle, she has the chance.

So, little steps towards improvement. She is so low that any improvement is welcomed with great appreciation! Hope is an amazing thing.


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