Wednesday, September 7, 2016

Post Seizure Update

I'm back! I took a hiatus, had to get back on my feet. The seizure was a doozy, although, it wasn't a grand mal so I'm grateful for that.

It all went down because I borrowed my mom's carpet shampooer, and I used her noxious cleaner. (Our house is normally a low chemical zone - I'm a baking soda, vinegar, organic, kinda girl.) A few minutes into the cleaning, I started getting lightheaded. I didn't realize in that moment that I was already in the seizure. Somehow I grabbed my medicine, and a phone, even though I don't recall making a point to do so. I wandered out to get fresh air, I felt like I was shuffling through a chemical cloud. The smell of the cleaner was so overwhelming that my brain felt like it was choking.

I went to a semi-shaded area of the yard, and although it took a long time of staring at the phone, not understanding how to work it, I was eventually able to hit redial which was my parent's work number. At that point, of progression, all I could say was, "It's happening! It's happening! Get Dan. Get Dan." I was unable to hang up the phone, and could hear them scrambling to find their cell phones. I could hear their panic, their dialog. Then I heard the dead dial tone beeping. I remember closing my eyes, and for the first time during a seizure, I started praying. I prayed to the rhythm of the beeping. "Thank you for my life. Thank you for my life. Thank you for my life. Thank you for my life." All in all, it wasn't a short episode, but by the time I realized that it was okay to relinquish control, that I was fooling myself by trying to command a different outcome, I just stared up through the semiopaque leaves, observing the rays of sunshine between, while tears streamed down the sides of my face.

When I'm in a seizure, I never know how bad it will get. I've had all sorts: absence, petite mal, semi-partial, grand mal. Depending on if I'm able to get my medicine and ice water, or a little sugar, it can escalate quite quickly.

They always start in my right hand, and climb through the right side of my body. As it spreads, there are checkpoints in my mind, that signal different levels of severity that I recognize in those moments. I will think to myself, as I'm trapped, unable to control my body, "Oh no, it's spread. Oh is that my right leg? Shit. Shit. How bad is it going to get? Is this going to crossover? Am going to have another grand mal? Should I try to roll on my side so I don't choke if I vomit?" And sometimes, like this last episode, I couldn't move my body at all to roll, to protect myself. I had to submit to the reality that everything was out of my hands. In times like that all I can do is hope that I won't wake up in the hospital, which has happened.

One boundary is my right shoulder. If the seizure spreads past my shoulder I know it will spread down my whole right torso, and right leg. If it makes it up to my clavicle area, I know it will go all the way to the right side of my face and then skull. For me that's a 4.5 out of 5 alert, with a 5 being a grand mal. Those are the whole body attacks - both sides, and I lose consciousness. Fortunately, I've only had two, and by fabulous miracle, I didn't pee my pants either time, which is quite common for those types of convulsions. So, I'm at a 100% dry pant success rate. Small but happy victory!

I did not lose consciousness with this seizure, however I did blackout for the hours afterward. I don't remember Dan taking me to bed, or whether or not I woke up and talked with him about what happened. Maybe I even slept all the way into and through the night, I have no idea.

Seizures are so crazy. It's as if my body gets possessed. I have no control. In those moments, I feel like I'm a puppet. It manifests as a physical aberration, and can end with a total brain fry, loss of consciousness even vomiting, urination, defecation, and injury. So far, I've been able to have Dan drop my pants so I didn't wet myself. I've vomited during/after the seizure, and have yet to poop myself, and hope I never will. It's all quite unpredictable, and I don't assume anything.

Legally, at this point, I could drive, but I'm too scared to do so. I've been walking or jogging when I needed to get stuff, or to meet people, or graciously they come to me, and Dan just picked up a bicycle pump for my tires, so I'll be on my own set of wheels very soon. Don't worry, I'll start slow and be careful to not induce a seizure while riding. I actually didn't ride a bike for a few years after I started having seizures because the movement was seizure inducing. Once I decided to say screw it, I can't live in fear, we joked that we were going to put adult training wheels on as an added security measure. We never did, but I like that we still have the option if needed.

When you're living with active epilepsy, you have to find creative ways to continue to live your life and have fun doing it! The last two weeks have been good to be homebound, I've moved all of our furniture, we switched bedrooms, I've gotten creative with my cooking because I couldn't just get to the store whenever I wanted, or at all unless Dan was around. It's amazing how lucky we are to be mobile. I'm soon to be beach-cruising around Edmonds, rain or shine. I'll have to plan extra hours to do the same thing, like get to the grocery store, or added time to get to appointments. I'll need to learn how to attach my bike to the front of the metro bus bike rack, which is intimidating, but not the end of the world. It certainly won't stop me!


This is a whole new world of adventure. I may have dialed back on speed, but a forced change of pace may just be what I needed.

21 comments:

  1. So happy to see you back up and smiling! Seizures are a mystery all of their own and I'm glad that you at least get a few moments of warning. Loving that you are living life and are able to find the good in the not so good. My daughter is currently stuck not being able to drive from seizure-like episodes (no actual seizure activity in her brain) and so I know the frustration of not being able to get anywhere on your own or at least not without a lot of work. Take care and keep on smiling!

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    1. Dang it! I feel for your daughter. It's a sticky situation to be in. I hope she's hanging in there. With this last seizure, that lacked an aura, it really heightened my respect for epileptics who don't get the warning. It's a whole new monster. Please hug your daughter for me! And you too. :)

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  2. Love you Jess !!!! Glad you are feeling a little better !!! Take care, Linda

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  3. We've never met. I started reading your blog after hearing about your story on My Edmonds News. If you see a stranger waving as you ride your bike, know that it's me, a blog reader, cheering you on. I'll keep my eyes open for you!

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    1. You are so sweet! You'll know me by my weird bicycle helmet and the squealing/rattling. And if not that, you'll hear the bell that rings everytime I hit a bump. It's quite a humorous adventure every time I pull out of the driveway. But it makes each excursion even more ridiculous which makes me laugh even more! :)

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  4. Hope you will utilize some of your local yokels (walkers) if you need to get somewhere especially with the dark rainy days ahead of us.
    Xxxxx

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    1. You're right, Marian - and I absolutely will. Once it gets rainy and dark, I'm too much of a chicken to ride in the dark. No extra brain surgeries, for this girl, certainly not from a bike ride in the dark. Love you very much!

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  5. I love your spirit and your soul. You seem to balance the light and dark of the situation so well, and I'm so glad you're ok. And you're in Edmonds! That's so not far from me. If you're ever up for a visit, I'd love to come hang out with you or even just chauffeur you around while you go being your bad self ❤️

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    1. You're so wonderful Adine! Thank you! I really appreciate you offering this, and it would be a double because I love being around you. I will definitely take you up on that offer, when it's needed. Xoxo

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  6. I thought you recently said in a previous post that Dan was the Badass?? You stand corrected....Jessica Oldwyn you are the Badass! Keep riding, keep living, keep praying; the best is yet to come:) You can so do THIS!!!
    Stay strong...

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    1. You're the best!!! Thank you for saying that. I didn't think I was being a badass, it was just a day in the life, so thank you! You put a huge smile on my face. :-D

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  7. So glad to see you're back on here and feeling better. I refrained from writing after Dan's post. What an amazing man you have. Seizures suck! My daughter is 19 and has not had the chance to learn to drive yet due to seizures. She is so frustrated. :-( In a way I think it makes her appreciate the little things so much more. She is a trooper, like you! Ride like the wind girl. Keeping you in my prayers. Xoxo ~ Nicole

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    1. Man - to have to deal with seizures at such a young age. Yuck! Lame! She's just at the time of her life when she wants more independence, and she deserves it. It definitely does help us appreciate the little things much more, but as I'm sure you feel the same way, I wish she didn't have to deal with these episodes! I'll keep you guys in my prayers too. So wonderful to hear your daughter's story, thank you for sharing!

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  8. Hey jess, i tried to search for The Courage Club on google play books but no luck. Any idea where to buy it? Sending you some island love!

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    1. You can buy it on Amazon and Kindle: https://www.amazon.com/Courage-Club-Radical-Audaciously-Living-ebook/dp/B01I20D21I#nav-subnav

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    2. Thank you Anonymous! Did you find it Lacy? Sending love right back atcha!

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  9. Hi- So happy to see you back and glad you recognize the need for a break! I haven't commented on here for at least three years so I'm certain you don't remember me. I have the same classification of tumor in the same place as you do and had my first surgery 4 years ago. I'm just curious if you are taking any anti-seizure meds because at one point I think you said you were not. You had ER meds as needed. Is that still the case? I'm currently on 3 different meds and hoping I could begin reducing but trying to understand how others are handling. I hesitate to ask because I know you need to just live and enjoy! So do not feel like you need to respond. Just happy to see that you are back at it and making me smile and sometimes laugh/cry at how similar our lives are. Take care girl- you are always an inspiration for me. - Nikki

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    1. Hi! You're right, I'm not taking any anti-seizure meds. When I experimented with them for several months, a few years ago, it made me suicidal. It was horrible. I am so sorry you're on three different types, that seems really serious, and I can only imagine how difficult that is! I take lorazepam at the first sign of an aura, and that stops the seizures from progressing (as soon as the drug hits anyway - I chew it and shove it under my tongue to absorb). And of course I remember you Nikki! Have you isolated any of your seizure triggers?

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