Tag: Epilepsy

The End of a Streak

On By Sunset RomoIn LoveLeave a comment

I’m writing this on my bed the day before. The day before I should be celebrating three full years. Instead, it’s just another old date I’ll forget and now get to start my process all over.

I’ve been able to celebrate being seizure free for only two months now. Realizing that sucks. It’s like when you’ve worked on something for so long and worked so hard to get to that point, only for it to get shut down.

When you think about it, it’s not just me. It’s any person. The only difference between me and a regular joe, is when my body decides it’s ready to shut down, it major resets in my brain. (Ha insert awkward laugh) Let’s say that you’ve been killing it all week, kids and pets taken care of, house cleaned up, dinner and of course keeping up with work, so you decide to have a rest. Well, I don’t. I keep going and going like the Energizer Bunny. Then right when I think I can keep going, boom, brain shuts down to stop me from doing more.

I’ve attempted to jump right back in after an episode, but I ended up in worse shape. Look at me, just love to learn the hard way. So now, once it’s over, I get to take 3-5 business days to rest and feel better.

Well, here’s to the end of July 23, 2022.

I’m looking forward to May 7th, 2023.

xo

Sunset

July 14th

On By Sunset RomoIn LoveLeave a comment

Oh how I dislike July 14th. It hasn’t always been this way, but ever since 2010, I’ve never wanted a day to pass over like I do the fourteenth. But after the semi better news I got yesterday, I can say that I’m more at peace with it. Maybe next year I won’t stay in bed and ghost everyone.

Every year, I’ve made an attempt to find a little bit of joy. I’d work in the yard, I’d make something that Pops would like, even if I wasn’t eating it, but somehow, I always end up in bed. This year, I accidently scheduled a doctor’s appointment that I had been putting off. Dragging myself out of bed at 6:45 in the morning wasn’t a good start. But once I got myself together, enough to not look homeless, I headed out.

After a few hours, I got out of my appointment and cried. Just enough to not be able to breathe and decided I wanted to get Whataburger. Thirty minutes. I waited thirty minutes for my food. Nothing like driving away and the food tasting like trash. So, I cried some more.

Eventually I got home, showered again, took meds and went to sleep. The entire day just dragged on. I had my mom to talk to about nothing. We just talked and laughed. We both knew the day, we both had feelings, but instead chose to talk to each other like it was a regular day.

Back into town, I grabbed some non-essentials and grabbed the boys from Eric.

Fast forward to almost nine o’ clock at night and I’m ready to work out. Except my emails that I’ve been avoiding are now going off. It was finally here. The results from my most recent EEG. The EEG that would tell me if I was getting worse, or if I’d finally been able to comfortably manage my seizures with less medications. (Excuse my language) I fucking did it. My results came back as abnormal per usual, but this time, it wasn’t taking over my life. It was “controlled”. The medications I’ve been are actually helping.

I.FINALLY.WON.

It’s not something that is gone. I’ll still have my days, my moments. But for now, I can breathe. Thank you Pops. You really are my Angel.

And Here We Go Again

On By Sunset RomoIn Love1 Comment

I don’t think there is an exact feeling I haven’t felt since my last episode. I’ve drowned the pain in loud music and as much busy work as I can handle. Hell, maybe more than I can handle. But I just keep going. That’s how it goes, you keep going until you don’t have any more in you. At least that’s the pattern I follow.

I’ve been told I do too much. I’ve been told that I need to rest. My nights have become restless, and my mind continues to wander. Don’t forget this. Did you make sure to do that? It becomes never ending. I don’t really know what it’s like to fully rest. Is it something you learn? Ha. I will say, it’s been added to my bucket list of things I’d like to make happen this year.

On to the next phase of testing 🤞🏼

But back to the main focus of writing tonight. I was forced into tests on tests of my brain. It’s mainly to show the world what a genius’s brain looks like. (insert corny laugh) I actually had to take one to ensure that I didn’t have any abnormal growths, which I don’t. For that, I’m grateful. I have to make sure to continuously remind myself of that. Not that I don’t believe it, but I actually am. I’m grateful to still have my boys, my job and my ability to drive myself around. I know that at any moment it could be taken from me. Or vice versa.

The second test, an EEG, it wasn’t as pleasant. It’s why I felt the need to talk. It’s why I started to panic and think that something really is wrong with me. I got to lay down while a lady put wires and glue all over my head. I have excellent test skills. But my EEG said otherwise. It’s showing that maybe my wavelengths aren’t as strong as they should be. Maybe the medication I’ve been on for the past three years has been a waste. A waste of time and money. A waste of trial and error that could’ve been used on some other options.

Getting this glue out of hair is the WORST.

I called my mom. I needed her. No matter how low I am, it’s something about her that reminds me of peace. It took her reexplaining that the medication I’m currently on is to control my seizures, it cannot fix my actual brain wave lengths. I will always have to live with epilepsy. Fudgeeescicle. I never ever wanted to believe that it was something I’d long term, forever and ever live with. A part of me still doesn’t want to believe it. I feel like maybe I’d be able to continue my semi healthy lifestyle and keep trudging along.

So what are my next moves?

I get to take another test in five weeks. I get to go to the neurologist and fight her on the medication she feels I need. I get to try other methods of relief that people may or may not feel a certain way about. Legally. I get to keep moving at this fast pace because it’s the only way for me to not go crazy. But most importantly, I get to spend the next seventy days with my boys and enjoying our summer together. Now that’s the best and most grateful feeling I can have right now.

We just don’t know what the otherwise outcome would be.

Xoxo

Sunset