I seem to walk around in a fog quite often. It has been more then a year now that these "episodes" as I call them have been going on. Truthfully, I can barely remember what the full force, unmedicated ones feel like. I have been drugged now for quite some time. I still feel them, persistently refusing to lay down and be quiet, instead popping up at the most random moments. As a place a bite to eat into my mouth. As I bend over to tuck the sheets in while making the bed. Rinsing the dishes. Shaving my legs. Suddenly, my brain is just somewhere else.
I can still hear people around me. The more drugs they put me on, the shorter and weaker these episodes get, and the more likely I am to be able to respond. But honestly, I feel like I GO somewhere else. Andy calls it my trip into the Matrix, and I guess that really is the best way to describe it. Usually I am transported back to a memory. Usually it is a real memory - sometimes it is from a book I have read, and not really something I have experienced. But, they are so random. Childhood. Teen years. Books that I barely even remember the plot line from. A few days ago I was asking Andy if he remembered the motel room we stayed in on our drive out to CA that was shaped weird, almost like a triangle. He said, "Yes, sort of. What about it." "Nothing," I replied, "I was just 'there' recently and wanted to see if you remembered it at all." One night. Not important, not eventful. Just a stop on our way to CA, eight years ago. Why was I "transported" there?
I have been thinking about going off the meds.
I am tired of being tired. Of being in a haze.
I got a letter from my grandmother yesterday reminding me of a task, and the deadline for it - she speaks of it as if I should know about it. I am absolutely clueless. I have probably been told. I was probably part of a discussion about it. Yet I have no memory. This happens to me a lot. You would think that my grandmother would be the one who is spacy, right? She would have an excuse... but, not a bit. She is as clear as a bell, and strong minded as ever.
I, however, seem to walk around in a bit of a haze.
I don't think it is the "episodes" that cause that. It is the drugs.
So, since the drugs don't actually get rid of the episodes, only dull them, and the drugs make me a walking zombie... perhaps the drugs aren't really worth it?
We'll see what kind of new information this latest study finds. Walking around for three days with probes stuck to my head better be worth it - because, and I try not to be a complainer, these things stinking HURT! I think I must be having some sort of reaction to the adhesive because my skin is killing me.
Any comments on meds? Better without them, despite what the doctors say? It is not like it is life threatening. I would never be tempted to give up my insulin - that I would die without. My pump had a clog in it not too long ago and my blood sugars shot up to 500 in less then 24 hours. So, I know that I would literally DIE without that medicine.
However, I don't feel that topamax and lamictal keep me alive. I am beginning to feel that all they do is make me less then alert.
Sigh...
Onto something lighter: The world from Zion's point of view.
Once again, pictures from our trip "up north". As most of you who have been reading this blog for any length of time know, Andy graduated from college while he was deployed in Afghanistan this last time. His professors were kind enough to let him finish his last two classes over the internet, since he only had a few weeks left, and his diploma came in the mail while he was gone.
His mom brought a graduation robe down and made him put it on so she could take pictures when he got home,
but we had never really had a celebration.
His mom took care of that!
Oh, the fabulous cake! Tirimasu is Andy's favorite dessert, so the cake was tirimasu flavored, but decaf to meet the needs of the weird hippie pair in the family (that would be Andy and I).
I let Zion have the camera for awhile, and he gave me a different view of the world. His angle of sight is slightly different, but I thought it was worth sharing. There are a few I took mixed in here, but most of these are Zion's.
Both my side of the family and Andy's hung out, and spend the afternoon just goofing off.
The kids did the limbo under a broom.
They enjoyed the cake quite thoroughly!
(as well as some leftover wedding cake, sitting next to it there)
Yummy!
Uncle Josh, Aunt Tara and Cousin Anistyn
And of course, like father...
like son.
Life is good, even if it is slightly hazy around the edges on occasion.
4 comments:
You know how I feel about meds! :) I am always trying to find a natural herb or supplement for what ails me!
Though, I always walk around in a fog and have no good excuse! ha ha!!!
Oh Bethy, I love you! Topamax is a TOUGH drug to be on, especially for a long time. But seizures really are dangerous and can hurt you, so I would worry about them taking you off of it. It sucks, though. Hopefully, this ambulatory testing will give them some ideas!
And if not, I vote Mayo. :) Think about it.. I was being treated by Emory people just a year ago and they DIDN'T diagnose my pituitary OR my thyroid, or my hormone problems! Not only wasn't I being treated for those issues, they didn't even pick up the fact that there WERE issues in those areas... even though all that stuff shows in bloodwork. If SOMEBODY out there can explain this - maybe it's Mayo.
I love you, babe. You are so strong and encouraging and COURAGEOUS in the face of all these difficulties. You really are inspiring, thanks for being the kind of big Sis I can look up to. :)
About the meds, talk to your doctor. Weigh the risks with the benefits. You will come up with the decision that is right for you. Listen to counsel from prople you consider wise along the way. I will pray for you as you make this decision.
Don't even joke about getting off your meds unless there is something else you can get on right then to be sure you don't have another big episode!! I would be constantly worrying about you if you weren't on anything!! Stay strong sissy, we know you aren't quite yourself on these drugs and that is o.k!!! Love you!!
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