It’s been awhile. You’ve all been on my mind the past couple of weeks. I know I’ve been quiet, but I wanted to tell you why. Explain a little what’s been going on in my life recently because, a lot has happened.
Two Saturdays ago, I went with Emily to a Blog Brunch, organized by Nichole and her bf Brian of Vanilla Extract. Bianca, Camille, and Ana were also in attendance. It was such a great meet-up; discussing food and fashion and blogging with a group of (mostly) ladies who are just as passionate about this world as I am. I left feeling inspired and like I’m really becoming a part of a real community. Afterwards (that night really) Emily and I went to a Prohibition-themed party for our twin friends’ birthday. Such fun.
I was so excited to write posts about both last week. I had made some treats for the party (I’ll do a belated post next week), and was just so geared up about blogging and cooking and networking. I was feeling like I was finding my pace and groove with this lil ol’ blog, and was really excited to start moving on things.
Then, on Tuesday, I had a seizure.
I didn’t know at the time it was a seizure. It wasn’t your Hollywood-convulsing-on-the-floor seizure. I was walking home, and I was suddenly overwhelmed by a feeling of extreme deja vu. I got dizzy, and nauseous, and incredibly disoriented. It lasted about a minute. I don’t remember what triggered the deja vu feeling, or what was going through my head at the time, but I distinctly remembered this happening once before, when I was about 12. The deja vu, the nausea, the dizziness. When I got home, I texted Shawn (who was working late) that I had just had a weird experience. We both chalked it up to my being hungry, tired, just generally weirdness. I sat down on the couch, had some soup, and tried to relax.
Then I had another.
All the same, all with that deja vu disorientation, lasting from about 15 seconds to a minute. I was confused and really, really scared. I had some trouble breathing, and I felt completely out of control of my body.
On Wednesday (the day after they started), I went to my doctor. She thought that I was maybe having an atypical migraine, one that manifests as neurological symptoms rather than a headache. That didn’t sound right to me; I’ve been having migraines for about 10 years and they’re fairly routine. This was very, very different. So my doctor sent me to the ER for an MRI just to be safe. Several hours later, I was being injected with contrast dye and slid head-first into a brain scanner. The MRI came back normal, no tumors or bleeds. Just a little asymmetry between the left and right sides of my brain. The ER doc gave me the name of a neurologist and said to call him if I had anymore episodes. Ten minutes after leaving the hospital, I had another seizure.
Over the course of 48 hours, I had more than 20 seizures.
Then, Thursday morning, I had a big one. I wasn’t responding to Shawn when he was saying my name, and I was apparently saying some very cryptic things that I don’t remember saying at all. Shawn was afraid I was having a psychotic episode.
That was the final straw. I called the neurologist and said I needed to see him because I was having more and more of these episodes and I couldn’t figure out what was going on. That afternoon, Shawn and I made our way into the city to see the neurologist. I did all the typical neurological tests (reflexes, push/pull, smile, walk in a straight line), tests I’d done about 8 times already in the past two days. They decided that since my MRI came back clean, the next step was to have me hook up to an EEG. They said that the EEG may not determine anything definitively, but that it would help rule out a few things. Because I hadn’t prepared ahead of time, the EEG might not be as helpful as if it had been planned, but it wouldn’t hurt. So I went down, had 26 electrodes hooked up to my head, and hoped for the best.
Then, like a stroke of sheer luck, it happened. I had a seizure while I was hooked up to the EEG. Another big one, one where I was unresponsive and incredibly disoriented. You guys, this is neurological pay dirt. My doctor told me most people go through 3-4 EEGs, including being admitted to the hospital to be constantly monitored for 48 hours, before they have a seizure. I had one within 20 minutes of being hooked up. Of everything that had happened in the past two days, this was the best possible situation. They had, on record, a full recording of one of my seizures. Sheer luck.
The next day I was diagnosed with epilepsy.
Immediately, my life was changed. I was put on anti-seizure medication, my driver’s license was revoked, and I was being prepared for a life of random limitations due to my new disease. No swimming alone. No baths. No cooking food on the front burners (I fought him on that one…how else can one properly monitor a roux?). And then the conversation about children.
Shawn and I have been married for 4 1/2 years. Babies have always been on the horizon for us, and recently it has become a fairly regular topic of conversation. Women with epilepsy are considered high-risk for pregnancy. Basically, it’s a delicate situation. They don’t completely know the affect that anti-seizure medication has on the fetus (some are definitely bad, some they don’t know yet), but seizures are definitely detrimental to the baby’s development. Labor can trigger seizures, and the seizures can cut off the baby’s oxygen supply at an incredibly crucial time. It’s just a really, really sensitive area, one that has to be closely monitored.
This was the most devastating for me. I’ve always wanted children, wanted to be pregnant, wanted to have a natural childbirth, wanted to breastfeed. Some or all of these things may not be possible now. We don’t know yet, but it’s something that’s going to require a lot of monitoring and conversation amongst us and my new team of doctors. I’m trying my best to keep positive, look to the bright side and be thankful for what I have, but I’m still reeling a bit from the diagnosis and sudden life change.
This past week, I’ve been shaky and weak. I’ve been very tired, walking long distances with a cane and sleeping about 10 hours a night. A combination of new medication (I’m pretty sensitive to meds anyway) and recovering from 20 SEIZURES has left me a shaky little bag of bones. Wednesday night was the first time I cooked in over a week: white beans and quinoa. Despite being so tired, it felt good to be chopping and stewing and salting. Like I was finding my way back to myself. Back home.
Over the next few weeks, I’ll be easing back into the blog, a few recipes and some smaller, life n’ such posts. Finding my way back. I hope you’ll all be here with me; I’d love to have you on the journey. THG