I'm headed for my tenth immunotherapy shot right now. I'm a little nervous since I'm barely back on my feet after that harsh seizure. My brain is foggy, and unstable, and I've been dizzy, and frustrated. I'm sick of having to deal with seizures.
I feel like a prisoner in my own brain. You'd think that because we have the wonderful news of no current tumor, that life would get easier, but with the seizures, I've been isolated further. Instead of not being able to drive, now I'm trapped not only in my house, but deeper, worse, I'm trapped in my brain. I don't trust myself; my arm and hand get funny; my vision changes; my blood glucose drops; I feel off; am I having a seizure? Do I need to go lay down? Do I need to grab an ice water or something to stabilize by levels?
If you've read the blog from the beginning, you'll remember the times I tried anti-seizure meds. I've been on three before. Each time they made me violently depressed, not able to leave the bed. I didn't want to bathe, or even read a book. I would stare at the wall, and when people would come check on me I would lash out. It got progressively worse, ultimately to the point where I didn't even want to live. I felt there was no point. But here I am, a couple of years later, desperate. I can't live like this. That's what I told Dan. We talked, as I laid in bed, with hot cheeks, and a damp pillow, I told him that we have to get back to the days when I didn't get seizures. Or at least it was a rarity. Not back before the tumor (that's impossible), but back when we lived at Densmore. We had a specific diet, and a specific lifestyle, that worked. No more crazy tumor diets. Dan and my parents have been adamant about me avoiding anti-seizure meds - they remember the effects. So I agreed once more that we could try diet and lifestyle one final time, but if it doesn't work, I'm trying more meds. No one understands (unless they've dealt with seizures) how isolating, and terrifying, and limiting they are. It's exhausting, not just for my brain or my body, but for my soul.
The meds are still scary, I don't support them fully, but I'm desperate. Just looking back into them is frightening. They can have side effects like infertility, or other issues which you wouldn't anticipate a correlation. More obvious issues include slower thinking time, memory issues, here's one link with information: http://m.neurology.org/content/69/22/E27.full.
For now, I'm back on track focusing mostly on seizures, not necessarily tumor prevention - although often they have similar treatments, two birds one stone. I kinda feel like I'm playing wack-a-mole right now, and all I want is to be able to live, to cook a meal, or go for a run with friends and not worry about being stuck and having a seizure. It's ridiculous, and I hate it. Just when we get great results about the tumor, the seizures flair up. Incredibly lame.
As we talked, me mostly venting, Dan made 12 guidelines to get us back on track to emulate the Densmore days. Here they are in no particular order...
1. No processed sugar
2. Limited fruits (an apple a day, or berries in a smoothie)
3. No grains/legumes
4. Unlimited vegetables
5. Limited/moderate nuts/seeds
6. Lean meats (but only 10% protein daily)
7. Regular nights in bed by 9:30 pm
8. 60 minutes of excercise daily (even if it's walking, or floor exercises at home. Doesn't have to be consecutive minutes.)
9. Limited dairy
10. Only decaf coffee, and that should be limited as a special occassion treat.
11 & 12. I can't remember right now.
We'll see how it goes. Essentially, it's just a guideline to live healthy, and happy, and it should get me back on a regular stable blood glucose (low BG is a trigger, which can often come after a spike), have more regular energy (excercise as a priority), and better rest (regular sleep schedule). You'd think I could just do this whole thing already, that if I just lived moderately, that it would all be fine. But I have some triggers that I need to isolate. I have to pinpoint the problems so that I can avoid the issues. Please wish me luck. I'm so tired of fighting, fighting the tumor and the seizures, but it's what I have to do. I won't give up. There has to be a way to succeed.