Right before my life turned 180

Sunday, July 10, 2011

Where has this robot been?

Whew, how time flies. So I have now had my programmming twice. Thankfully we will be doing them every month now that I have met all my medical deductibles, so it doesn't cost 500 plus 40 office it's all covered, along with my botox injections (were 400-650 every 3 months)& my baclofen pump refills for my essential tremor (were 400-500 every 55 days).
So, yeah broke but the good side is no coughing up big bucks for 6 more months!
So, even before the 1st programmming,i had improvement just by having the leads placed & finally all the moraphine (from the pump)& hardcore break thru pain meds were officially out of my system &i need less oral so just the new found mental energy was amazing. But oddly, after the first programmming, though it helped my gait, wasn't working for me. It's weird but I was having a new kind of headache, aggression & my whole head felt very bruised. I lowered the stimulator (pace maker) for my dystonia side & the aggression went away right away! But of course lower setting, more dystonia.
As for the bruise & headache, well one day I just shut off the other stimulator & within 2 minutes the "bruised skin"& headache gone!

So finally saw my neuro 2 weeks ago & we went to setting B, raising the volts on the left machine & lowering volts on the rt.

My dystonia & tremors have been way worse, but it's texas, with the days temps avg 101-107. It's one of my biggest triggers, so home bound again.but with the new mental energy,i would dare to drive to sonic or a shop near by, then regret it. usually (before dbs) I would need to rest & do nothing the day before & after "an outing" just to recoup. It's like that now, except my thyroid is again so out of whack (graves-means it is way high & can't sleep, or way low & sleep way way tooooooooo much) that between that & the heat I am just trying to keep up with what my body is doing at any given moment.
But I see the neuro tue& can try to tweak the dbs for the heat at least!

I have been very busy when awake, just doing medical appeals, paperwork,& art stuff when I can.

One thing is my eyes are really bad & the dbs settings do seem to affect it as well, so hopefully when a good setting is found I will have to do a new eye exam.

I also have been busy preparing to "organize & run" the big event for the kids & teens for the symposium in chicago in august. There were & are alot of things I needed, so thats kept me busy.i am soooooo excited, I'm trying to keep it somewhat secret the cool plans I have laid out:)

And finally, the coolest thing is that I start my swim class's a class at a "gym" but it's where you have to have a drs note to join,or do PT there etc. my muscles are so twisted & weak I am not doing the full gym thing yet.since my wiifit &i do fine working on balance,i think the swim class will be tough's a class for people with parkinsons or MS so it's really tailored for my needs, plus I am excited to work on meeting new people too. It's weird, if you know me I am very social, but being home bound almost two years after being at my job where talking is 90% of the day.well let's just say, the dogs haven't helped, ha !

Ok, as you can see from the post time my thyroid is super high, so I can't sleep a wink.

Soon,i will start posting more, updating the site & posting more videos:)

Happy day to everyone,

Raising DYSTONIA awareness, ONE person@a time!

1 comment:

  1. Amy! I just discovered your Youtube and Blog and want to wish you the best!! My son has RMD (not quite the same, hu?) How are you feeling? I'm sending good vibes your way <3 Kirsty


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