Journal entry by Beth Solem —
Several folks asked for an update - so here it goes.....
The results of my MRV came back great - didn't see any blood clots or thinning of my veins.
The results of my EEG showed that I do have "activity" going on so the next step was to another EEG but this time it was going to be for 48 hours. I decided to do just like a normal day - so I got the OK to wear it to work and carry on with everything as I usually do. It was a bunch of wires connected to my head and then connected to a box to record everything. When I went to bed I had to set up a video camera to record my actions while I was sleeping - Rod slept on the couch those 2 nights - guess he wasn't into making some videos in bed - LOL
The results didn't show anything different than the other one - my doctor said that there really wasn't enough data to say one way or the other - that I should or should not be on meds for seizures - so I have to pay attention to everything and record - if I feel that something isn't right or something happens again - then I will be on meds. The shitty part is - once you start - you are on them for the rest of your life - but I guess that beats having seizures. But then I have to worry about it wrecking my liver or kidneys.
I received my first round of Botox - there were 27 injections all over my head and 4 in my neck. She said that most folks don't get any relief from the first round - usually the second or third. And of course I was one of those that she was talking about - but I will go back at the end of August to try it again. Rod was there when I got them and she - the doctor said he can come and hold your hand if you need him to do - the look on my face must of said it all cuz she said you don't need him too - you went through brain surgery already - I said yepp you are right.
My headaches are about the same - everyday - let me tell you - this weather changing all the time can stop anytime - it doubles the pressure that I feel in my head.
A co-worker asked me how do you deal with all of this stuff - aren't you worried about it coming back and being worse? (which usually if they do come back they will be a higher grade)
I took this from someone else on one of my support groups on Facebook - she nailed it and couldn't of said it better myself-
Imagine you are going about your day, minding your own business when someone sneaks up behind you- You feel something press up against the back of your head, as someone whispers in your ear.
Shhhhh.... don't turn around. Just listen. I am holding a gun against the back of your head. I am going to keep it there - and I am going to follow you around like this every day for the rest of your life. I am going to press a bit harder, every so often just to remind you I am still here, but you need to try your best to ignore me, to move on with your life. Act like I am not here, but don't you ever forget..... one day I might just pull the trigger - or maybe I wont. So that sums it up very well -
It is that time of year again to go to Milwaukee and get my MRI - this weekend my nerves have been crazy - thank goodness Rod has tried to keep me busy. He has been my rock through out all of this - probably not what he was thinking he signed up for - hey for better or worse - sickness and health - well he is getting it all... I couldn't ask for a better rock than him. Thanks to my sister that listens to me vent about shit - and the handful of friends that truly understand how I am feeling. And my favorite dog that makes me smile even through the tears.
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