Feeling Good

It's been over 6, almost 7 weeks since my last "microseizure." I've had no flashes, no inkling of anything. *knocks on ALL the wood* I feel great. I really think we figured out what was causing them. My triggers were low blood sugar, lack of sleep and the flickering of light that strains my eyes.

I wear my sunglasses literally every time I go outside. Even if it's a grey sky. I wear them until about 6pm. After that, the sun has set low enough that the reflection isn't bothersome. I think that has made a huge difference. 

I'm constantly eating, haha. As I'm typing this up, I'm actually eating peanut butter and crackers. Thinking back, a lot of my flashes occurred when my blood sugar was low. The longer I waited and the hungrier I got, the more likely I was to get a migraine or worse. Speaking of migraines, I haven't had one in months, which is a miracle for me.

As for the lack of sleep, I'm realistic about what I need now. Just because I can run on 5 hours of sleep doesn't mean I should. I average about 7.5 hours of sleep every night except for when Colin wakes up. He's been great though, except when we go stay at my in-laws. He doesn't sleep there. Ever. Never has. It's rough, so I need to be healthy so we can stay home and not stay there anymore and get some normalcy.

I'm also in a better place. I'm happier. I love my life and my family. I'm so lucky to have them. I have started enjoying life for once. I preached for so long that epilepsy was just a diagnosis and not a lifestyle and unfortunately, I didn't listen to my own words. I let it get to me. But not anymore. This is my life. This my path. And I'm going to enjoy every minute of it.

Chin up, friends :)

Ernest Hemingway "Broken"

We are all broken. That's how the light gets in. - Ernest Hemingway, American author, 1899-1961

Neurology appt

Dave and I went to go see Dr. L today. We went to try and figure out a new game plan for me since I was having such severe weight loss and the episodes. 

She did some tests (normal finger tapping, walking back and forth, etc), took my vitals (BP was 110/59 - which is OK but low for me) and weight (128.4 with clothes on, so about 30 lbs lost since on the Zonegran). She asked Dave a lot of questions. He's a better judge than I am with this since he's the one witnessing it. 

The only thing that I could be honest about is how I'm feeling. She asked me if I'm feeling stressed or depressed and I answered honestly. I'm overwhelmed. I'm sad. I'm stressed. I'm worried about so many things. I'm crying a lot. I'm all the above and more.

And I've just got to figure it out because I can't take anything for it. I know Dave is there for me through this. I know Colin loves me. No one has to tell me that. And I know I have to be strong for my family. 

What Dr. L essentially told us is that I've been having microseizures (not PNES). They are lasting less than 30 seconds and usually brought on by light (reflective) and stress. This is so incredibly disappointing. I really thought this was under control. 

The plan from here on out is to raise my Zonegran by 50mg 2x a day, monitor my weight and make sure I ALWAYS have sunglasses (*sings* I wear my sunglasses at night…). The Zonegran really has done wonders for my migraines. But the weight loss and the microseizures need to be under control, too.  

This is getting ridiculously long, I know. 

I need to "man up" and be strong. I need to take this head on and do the things I need to in order to be healthy and happy and to keep my family healthy and happy.  I need to start wrapping my head around this. 

I also need to come to terms with the fact that Dave and I probably won't conceive again. Colin is amazing. He is perfect. We love him more than anything.  But the risk of going through another pregnancy and having my physiology change again, and then having the potential for more seizures, is high. We would have to talk about adoption if we wanted more. It is very hard to hear someone say that you aren't ALLOWED to do something as opposed to CHOOSING not to do something. It's a big pill to swallow.

This turned very disjointed,  I'm sorry.  There's a lot in my head. You're probably going to be hearing from me a lot lately.