My last blog entry was a week ago. I was so scared it was hard to see anything in perspective. Not to say that I am not afraid now – you have no idea. Fear is a terrible thing. It overtakes you, blurs the lines of sensible and real. This is not the effect that I thought I would be dealing with. I am strong – very strong. I do not lose it easily. This has made me feel weak, no matter what all these beautiful encouraging people in my life say. It is how I feel, and that is valid.
Here is my life for the last 2 weeks: Monday, 2 grand mal seizures in the airport. Tuesday, hospital stay then fly home. Wednesday, EEG. Thursday, doctor’s visit due to intense back and shoulder pain, then work (with no memory of work). Friday, more work (limited memory of this). Saturday and Sunday, somewhere in there I saw Danie and it made me happy. Monday, work again and lots of back pain. Tuesday more of the same. Wednesday, I begin to be able to raise my arms up above my shoulders. Thursday, I can undress myself (barely) for the first time in almost 2 weeks. Friday, neurology appointment. Answers.
EEG results: yes, it was abnormal but confirmed my already known diagnosis. Flashing lights do not evoke seizures, but heavy breathing does (this is somewhat comforting because it is the exact same results as when I was 14). What part of my brain is this stemming from? Well, my doctor gave me a new answer. I described what was described to me, how I looked when I began to seize. I looked to the left first. This is something different, apparently, this indicates that the seizure starts in one part of the brain, rather than in the entire brain at once, which is what was previously understood about my particular type of seizures. He said it opens up more doors for medications since it affects a different part of the brain.
Medication: We are going up. 25 mg at a time, but still on my same meds. I need to record the number of petit mal seizures I have daily, if any. There is wiggle room, but apparently I’m on a relatively high dose already.
Lifestyle: I cannot drive until at least a few months of seizure free living. I asked him about alcohol intake. Life would not be terribly different if I couldn’t drink anymore, however I brew. I have fallen in love with the art of brewing and it might be nice to try the fruits of my labor. Fortunately he said that I can have a beer or two every now and then and it should be fine. But no hard alcohol (no problem… except what to do with all this limoncello I just made?) and no more than 1 or 2 drinks. That’s a-ok. I haven’t had anything to drink for 2 weeks and it feels good. While I really do want to try this Belgian Triple that I made, I’m going to go a few more weeks chemical free to make sure that this all gets sorted out well. It’s just not worth it. Oh, also, no baths or swimming (totally never thought about that!).
Today: I feel much better. No seizures at all today… yet. I can move much more, I’ve been on a cleaning frenzy and that feels good too. My grandma is coming to visit in 2 weeks and one memory I have as a child is that every time my grandma would come out from Florida to visit, my mom would clean the house, top to bottom, because Grandma needed it to be CLEAN. I’m sure she doesn’t really care if the insides of my dresser drawers are vacuumed, but it’s sort of a nice excuse to get a lot of housework done. And something to occupy my time while I sit home alone. Brandon is working today and since we live in the boonies with no public transportation, I am trapped. So productivity wins.
This whole no/low alcohol thing had me thinking. There exists non-alcoholic beer. Knowing the process of brewing, I wondered how that even happened if you actually fermented it. The process of yeast eating the sugar from the malts is what creates the alcohol so how do you get non-alcoholic beer? I’m on a mission to find out. There has to be someone out there who makes good tasting non/low alcoholic beers. Craft beers. I will make this my new mission. I will create an empire! There’s got to be a market for this.
I’m ready to start again. I’m ready to let go of the fear. I want to start cooking, start brewing, start canning. Keep up with the gardening (weeds, holy moly weeds). I’m ready to jump back in. Without the fear, this world looks a little more clear, more inviting. Hello world, I’m back!