Back-To-Back Seizures (Kinda)

Well toots. I had another seizure on Saturday. That's a fast turnaround since I just had a seizure a few weeks ago. Never a good sign.

I was playing with my nephew, who had just finished his peewee football game. His older brother was suited up on the field.

We were swinging on tree branches, between practicing touchdown dances, when all of a sudden I felt the seizure coming on. I looked at my eight year old nephew, who didn't even know what a seizure was, and by the tone of my voice, he knew something was very wrong. I told him, with my bug eyes, to get Dan. I slowly followed, pulling pills out of my purse. There was so much excitement, the fans cheering for the players on the field, kids throwing balls, girls taking SnapChats with their friends, laughter, yells. There was nowhere quiet to go.

I put a pill in my mouth and chewed it, hoping it would seep under my tongue and enter my blood system fast. Dan came to me, pulling off my coat since I had lost control of my torso. I always overheat when there's seizure activity, so it's important for me to get cool as soon as possible. He gently rocked me down to the ground, supporting my neck. He then ran to get water, and ice, and a few people started to ask if we needed the trainer, or a medical professional. I was able to tell them it was nothing to worry about, that I'm epileptic, and will be fine in a minute. A big fear of mine is being put in an ambulance, and being placed in the hospital, but we were able to avoid that issue. I don't know what I would have done without Dan.

As the shaking and twitching waned, the emotional release of the seizure loosened tears that streamed down the side of my face. I was so relieved that it didn't turn into a grand mal. I was actually thrilled that I had managed the episode in a calm way. That it was relatively under the radar, and aside from the throbbing headache, I was able to take a group picture right before we snuck out. I was out of it - I don't even remember taking the photo, but I'll never pass on the opportunity to commemorate outings with my sweet little nephews whom I absolutely adore.

I hope that I didn't scare them. I ended up with a droopy face for several hours. It was fine if I was toothy smiling, but the half-assed smile was the dead giveaway.

I have to say that this seizure episode will not stop me from running around getting crazy with these cuties. However, I might need to spend a few minutes prepping them for a future episode so that they know what's happening, and that it isn't anything to fear. If I explain it the right way, with a nice coloring of humor, they might even think it's kinda cool. Usually, life is all about how you handle it.

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.

The Carrolls meet THE Carroll

I've been up since 4:00 am and it's all because of a seizure. I've had a seizure in my sleep before (according to Danny - I don't remember it), but on September 11th, just a few days ago, just at the same time as the anniversary of the twin towers collapsing, I was jolted out of bed, screaming to Danny that I was having a seizure. He jumped into action, knowing fully what to do, but I couldn't stop myself from screaming, "Water, pills, water, pills, water, pills, hurry, hurry!!!" It was like I was in a trance. A trance where you can't feel or move your right side. A trance where you have no control over your body, or your mind. It was powerful, but not a grand mal. My whole right side, from the tip of my toes to my cranium was tingling and throbbing. I was paralyzed, even unable to drink on my own. Danny held a glass to my mouth as water sloshed all over my face and neck, soaking our mattress. When the seizure subsided, I couldn't talk or think or make sense of what had just happened. So here I sit in the dark while most people sleep. I don't sleep because I'm afraid to. I don't know how long this fear will last, and I know it will abate, but I wonder if this new experience will stick with me forever. Will I always have a deep-rooted fear of a sleep seizure? Is this going to haunt my dreams, nestle into my subconscious?

Ever since I was diagnosed I've been afraid to miss anything. I want to soak up life, to enjoy every moment. But sleep is paramount too. I'm not sure what I'm going to do about this new found issue. I live life big. I laugh and jump and dance (albeit ridiculously), but I'm fearful too. I may be the happiest yet most terrified person on Earth. I'm scared every single day that the mass in my brain will grow. I'm scared every single day that I may be one of the ones who die young and I won't be able to stop it. I'm scared every single day I'm eating the wrong thing, drinking the wrong thing, putting the wrong product on my body (the toxins), that I'm too near the wifi, that our water has too much crap in it, that I'm not exercising enough or that I'm exercising too much. But what permeates the most in each moment is that I'm scared every single day that I will have a seizure. And now, to add to the list, I'm scared that I'm going to be woken up mid-seizure. It's like waking up to the fire alarm, but it's not a drill, there's a literal fire in your brain, and it's surging through your body. And when it's over, you're ravaged. You're wiped. You're almost ruined, but you know you have to rebuild. And with any disaster, it's the aftermath that takes the most work.

The irony of everything is that I was jolted out of bed with that nasty seizure on the morning I was to go to a Seahawks practice. The day I was going to meet coach Pete Carroll. Dan was temped to cancel because I wasn't making sense and my face was droopy, but I begged, and I pleaded, and he tilted his head, squinting, and said okay. The unfortunate part is that one major side effect of my seizures (although I'll bet it's common with many) is memory loss for about 24-36 hours. So, being the stubborn cuss that I am, not wanting to miss out on the opportunity, or wait one more day to meet Coach, that I will have to work very hard to remember our special time at the Seahawks practice. The whole day was surreal. I shook hands with Bobby Wagner. (What? Yep, that happened. He may be my new favorite.) I watched Beast Mode get stretched out right in front of me. He was talking - I saw it. I watched Sherman bounce around from crew to crew. I noticed Russell working on the QB stuff, I could see the smoke drafting from his ears with the laser focus. I chatted with the Seahawks crew, and laughed. I tried to push one of the things that the linemen push, the metal things with the pads that simulate the opponents, and I'm pretty sure I moved it a millimeter. When the practice was over we talked with Coach which was awesome! There's an amazing familial vibe, a camaraderie. Everyone was jovial, but dialed in. I joked about how I wanted so badly to run out there and jump in, to race anyone who was willing, but of course I stayed on the sidelines. We were the only onlookers that weren't part of the team or media. It felt crazy, and profound. I have a deep respect and love for the way that Coach Carroll handles the sport, the players, and life. He practices with the players, running around, sweating like the rest of them. He believes everyone has the chance at greatness, his motto, "Always compete."

The older I get, and especially since I was diagnosed, I don't enjoy competing as much with others (maybe it's because with cancer, we can't all win and it's not our fault - it's often out of our control), but my internal competitiveness has never gone away. It's what helped me strive to learn the alphabet, and talk, and read, and write again. It's how I was able to start walking as soon as possible, aided by Dan, and my friends and family. I always knew I could do better, that I could do more. And I still look to challenge myself (even if it turns into a hysterical near disaster like the recent triathlon). If life was a drink I would gorge myself, while trying to jumprope and cook dinner and garden and read a book and run in circles. I want to do it all as much as I can. But in order to recover from all that madness first, I'll have to get over my seizure fears, and just get some sleep.

The lair.

Wait, what's that? Oh ya, we're here with Pete. 

An O'Carroll family photo. 

My, I can't believe I'm at his press conference face. As he walked away, he jokingly said, "And any further questions to you Dan and Jess?" Ha! Good one Coach. Yep, Pete Carroll knows our names.

The TSA checking the busses, and gear so that the team can just roll up to the plane. They were flying out to St. Luis when we rapped up. Go Hawks!

Warning: Graphic

Well. I did it. I went in for the "little" procedure to remove the rest of my naughty mole that wanted to turn into cancer. I kept my chin up and tried my best to joke with the DR & the assistant, telling them how bummed I am that they're working on my smaller breast. They laughed with me, and kept the mood light. I made it through the numbing (which they warned me would cause my heart rate to increase), it took three shots of numbing stuff, and soon, we were on our way. As soon as they started cutting, I could feel tugging, and snipping. All of a sudden, as I was trying my best to power through, my hands got really sweaty, and a wave of nausea came over me and I knew I was having an aura.

I tried to keep calm, knowing that freaking out makes the seizures come on faster, exactly what you're trying to avoid in that moment. My parents were out in the waiting room with my purse where I keep my pre-seizure pills which efficiently stop the auras from turning into a full blown grand mal. I quickly said, "Guys, can you stop. I'm having an aura, I need water now - cold water - and I have a pre-seizure pill in my purse in the waiting room. I need it. Please go get it. RUN." It was so scary. The assistant ran to the waiting room and grabbed my purse from my mom. In the meantime, the DR soothed me, helping me drink the cool water. When the assistant arrived back in the room, he took out two pills and I placed them under my tongue, waiting for them to dissolve. In the meantime, I practiced deep breathing, and the boys calmed me down by discussing puppies. They were serious heros, so kind.

I made it through the rest of the procedure which lasted about 45 more minutes of cutting, tugging, and then two different strands of stitches, both inside and out. They separated the skin from the tissue and pulled them together, yanking, and that might have been the worst part. That or the cauterizing - one of the places they cauterized I felt a deep burn. Ouch. I honestly had no idea what I was getting into. I thought this was going to be more routine. I've learned that I can not handle awake procedures. Next time I'm going to have to tell the DR that they need to put me asleep or something.

Even yesterday, and this morning, I'm feeling completely nauseous, and ill. I feel very vulnerable for seizures right now. I can't explain it. It's just a feeling that I get. That's why I didn't blog yesterday. I'm trying to take it easy.

It will be one week before I can get my heart rate up, so I guess it'll be easy to keep things light and simple. I'm dying to run through. That always makes me feel better. When I get to the seventh day, I think I'll be like a race horse just bursting through the gates.

I emailed back and forth with a friend recently and she told me to just listen to my heart and that I'll know when it's right for me to start driving. It is painfully obvious that I should not drive for a long time. I shouldn't even think about it. Although we had been clear for the past 5.5 months of little to no auras, this one was very severe. It is a miracle that we were able to stop the seizure. What a relief. I just need to focus on being healthy, exercising, eating right, sleeping well, and worry about things like driving later. I will not put other people in danger just because I want to go to Costco to save on Dave's Bread. Gotta keep things in perspective. I'm just grateful that I can walk to PCC. A few extra bucks to avoid running someone over is quite a deal!

Here's a few photos of my little missing mole. Sorry, it's totally gross, and pretty graphic, but this is a blog to share about my journey. Hope you aren't offended: