beccab1009 - Tumblr blog

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Take a listen… Who's Tiffany Santa? episode of Epilepsy With Becca

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Take a listen if you want. It's a short one.

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Here’s a show for you… Happy Purple Day! episode of Epilepsy With Becca

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I wanted to start a podcast for awhile now. I'm excited to start this. I hope you'll join me on this journey!

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When I first started having seizures I was jerking & convulsing.

But now after 9 years I just zone out for a few seconds and I'm back.

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1 year ago today I shaved my head for a SEEG. It's crazy how fast my hair has grown. I can finally put it in a ponytail now.

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This is crazy to think about! When I was diagnosed I didn’t really know anything about it. I knew of it. So I did educate myself so I could tell other people that would ask me about it. Epilepsy is not talked about enough, and it’s one of the most common neurological disease.

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It's kinda weird that this thing is in my head. It has been a little over 3 months since I've had the RNS device implaned. After a month I got it turned on. My neurologist and techs have been making some changes with the settings. Hopefully soon they will find the perfect settings for me to be seizure free!

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I met with my neurologist today and she improved the settings on my RNS again. It’s so interesting to look at the information it gathers, and when the device actually sends that shock.

I love my neurologist way more than my last one. She will get right to the point and not sugar coat things. But she can also joke around, and have some fun. She is definitely worth the hour drive. Lol

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I finally had my post RNS surgery doctor appointment today. He went over my CT scan I got right after recovery. It was weird looking at them. Especially the the second picture that is in color. I even said to him, "That's freaking creepy." Lol.

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He looked at my incision, which is on the left side. When he went to look at it, he went to the right side. I was like it's on the other side. Lol. He said the incision looked good. It is still not fully healed.

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He cleared me to go back to work. Which I'm super excited about. I haven't worked in almost 2 months. I've been going crazy. So Saturday will be my first day back.

[beccab1009]

Today makes it one month since my RNS surgery. It is wild that it has already been a month. Recovery has been awesome. A lot easier then recovery from my SEEG. I have an appointment next week with my doctor. So hopefully I will get cleared to go back to work!

[beccab1009]

If you look up the official definition of epilepsy, it will be something like this. But here is my definition for normal people to understand. My brain isn’t like most peoples. We piss each other off a lot. I try and be nice but it normally doesn’t want to be.

[beccab1009]

Sharing my story is all I want to do. I’ve had epilepsy for the past 8 years. It has been a crazy ride. It started when I was a freshmen in high school. I didn’t really know anything about epilepsy. I’ve heard the name before. But then once I got diagnosed I started researching about it. Fast forward 8 years I have more knowledge about it. I’m finally getting answers I want. I recently had surgery for the RNS. I’m excited to continue to share my story with others so they get educated.

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It has been two weeks since my RNS surgery. Since I still can’t go back to work I find myself having way too much screen time. Which a lot of it is due to TikTok. It’s kinda like quick sand, it drags you in and you can’t get out. Lol. But to help with that, I was super excited to finally get this book! I love this family and the bond Harold and Rachel have. I’m excited to continue reading it! Ladies…and guys I guess too lol If you need a good book to read about a husband and wife, here it is. They also have a YouTube channel. So if you’re having a bad day watch some of their vlogs. Their kids are the cutest, they’ll brighten anyone’s day!

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Epilepsy Life...

I started this tumblr and also my instagram page to share my epilepsy story. I know I’m not the best at updates, sorry. But I’m hoping I’m at least helping some people. Even if it’s just one person. 

So here’s a little update about how I’ve been almost two weeks after my RNS surgery. I’m recovery pretty good. I’m getting tired of just laying around. I want to back to work, but of course it’s too early. Because of the stupid virus I am still limited to things I can do out in “the world.” Lol. My state is slowly opening up. But I have been recovering well, and I’m excited how the RNS will help me in the future!

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《Caution》The second picture might be a little to much for some people. I haven’t shared my picture of my stitches and staple marks from my SEEG. As you can see I had staples that ran right along my hair line. They had to put 26 in. Then I got 16 stitches at every hole where they put a probe. This picture was two weeks after I had my SEEG. The morning of this picture I had my staples taken out. The second picture is from my recent surgery. June 1st I had the RNS implanted. It was really nice they didn’t shave a lot of my hair. They just trimmed a little bit of it.

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I had my RNS surgery on Monday. The surgery went a lot better then the last one. There weren’t any extra trips to the OR this time. The last surgery was for a SEEG, and I ended up having a hematoma in recovery. I had the same surgeon as before, one of the best. Him and his team did an awesome job. I came home yesterday afternoon, and I’m hoping recovery will be easy. Thanks for everyone that was praying and thinking about me!