Gosh, it has been a while since I posted. That is primarily because I was without my computer for almost 3 weeks and 2 weeks before that it wasn’t working right anyway. But, now it is fixed – more or less – and I am back online.
So, there have been some things going on that I will update on:
~ Still waiting to hear about insurance. We got the rest of our application turned in towards the end of June, so hopefully will hear sometime soon. We cannot move forward on getting the positional CT scan and figure out what the heck is going on in Em’s neck until we have insurance sorted out. Incredibly frustrating but hopefully we are getting there.
~ Saw Dr. Tinkle on the 24th. Didn’t accomplish much since we are still in waiting mode. He feels like there is no point working towards doing the 2 week intensive therapy program right now since she is so bad neurologically. Until we get her headache and pain under control, she won’t be able to manage the program. She is struggling with the very, very basic exercises PT and OT gave her. When she mentioned that to him, he told her they thought she was in too bad a shape for anything more difficult. I knew that, but it was a bit sad to hear him put it like that!
So, he referred us to the pain clinic and the headache clinic. We go July 14 to the pain clinic and August 22 to the headache clinic. I am a bit ambivalent, tbh. I am convinced that the headache is cervical instability/chiari/poor CFS flow/tethered cord and I have my doubts that there is anything beyond surgery that will touch that headache. Maybe it will – I hope – but still we are just looking at the symptoms instead of going after the cause. I know it is just another hoop to jump through, to rule in and rule out. But we already ruled migraines out so I am getting a little tired of the hoops. On the other hand, if they can give her something to help her feel better, it would be very welcome.
Oddly, I am a little ambivalent about the pain clinic also – which is funny because I have been asking for a referral for almost a year (not from Dr. T, just in general). We have been doing much of the non-medication pain control for the last year – distraction, heat, ice, TENS. We need them to offer medication that helps control her pain. Hopefully they give her what she needs – she deserves some relief. They have a good reputation so I am trying to have faith.
~ Her sleep has been rotten – even with increasing her flexeril to 10 mgs a night. That had precious little impact. However, the last week she has been sleeping much better – even ‘normal’ or something close to it. She has a nasty cold and has been taking cold medicine – with benedryl and I think that is making her sleep better. She has been falling asleep between 12 and 3 every night and waking up – on her own – between 10 and 1. That is a HUGE improvement. So, I think I will just start giving her benedryl at night, until we get another option presented. Hopefully, the pain clinic will address her sleep as well as general pain.
~ She has passed the big milestone we knew was coming. (Will not actually type it because she would KILL me if I did) But the milestone came and went with little trouble or issues. Maybe now her body will level out and the EDS symptoms will settle down. Not holding my breath for that, but at least we can hope.
~ I found some very interesting info about the possible cause of some of her neurological symptoms and a possible medication that could help her. I will post about it in detail soon with links to prettyill.com but I have to say, it has given me hope. Cautious hope, but I will take it.
I think that pretty much covers the highlights of the last month. There are a few other things that will have to wait but I got the important stuff for now.