Adjusting to the new dose of Keppra and I’m so. tired. Usually I up the dose the night before, but I decided to wait until this morning so I would have an even number of doses. Definitely feeling the slowing down. I’m grateful today is slow at work because I don’t feel like a total slacker for taking forever to do things. Better slow and accurate than fast and wrong, I suppose. I’m still going to make myself go to the aerial gym tonight to get out of the house. I’ll watch the trapeze class and then take contortion class. Right now I’m the only one registered, but I know that will change. Of course, the last time I took class was in November, so who knows how the attendance has changed since then. I may get a private lesson. That would be nice. Either way, I don’t want to fall into moping mode. That’s not helpful.
My plan is to go to ballet tomorrow night, a different ballet class on Wednesday night, and then “Rockette bootcamp” also on Wednesday night. The last kickline class they held didn’t last very long and this one is taught by an actual former Rockette, so I want to catch it while they have it. Then I’ll give myself a few days off. I figure exercise can’t hurt and none of it is done off the ground, so I should be fairly safe. I haven’t heard back from the psychiatrist yet and I left another message this morning. As I recall, it took a while for her to call me back the first time I tried to schedule something with her. I’m not expecting to get an appointment much before mid-August. That’s the down side of good doctors. It takes forever to get in to see them. In the meantime, I’ve got the Keppra, exercise, and talk therapy, so I should stay on a pretty even keel.
Now I just need to perk up a bit.
I can’t say I was surprised when I heard the news of Cory Monteith’s death. I know the autopsy report will come back as some kind of overdose. When someone has been abusing drugs and alcohol for that long, it’s not a matter of if, but when. That’s the truly heartbreaking part of it. Deep down, you know he chose that way out. He knew sooner or later he would die from the abuse. I feel for everyone who loved him and tried to help him. I lost a dear friend of mine to a heroin overdose about a year and a half ago. One of the last things she told me was the next time she used, she would die. For her, she couldn’t escape the darkness. She didn’t know how to find her way out.
I know what that darkness feels like. I was there 3 years ago. I had so much pain, no name for it, and nothing seemed to help. Drinking would numb it for a time, but then the drunk would wear off, the hangover would set in, and I’d hate myself as much or more than I did when I started. It’s a horrible, lonely place to be in. There were days where it was a challenge to get out of bed and get dressed, much less face the world like a functional human being. I knew I didn’t want to keep living that way. I didn’t want to stay in that darkness. I was lucky to have an amazing support system of people who loved me deeply and helped me in any way they could. I was able to put a name on my pain and start to heal it. I found others like me who could understand the hell I’d been through and come out the other side. I gained an understand that I’ll never truly be “over” my experience because it’s part of who I am now. But it doesn’t have to rule who I am. I can look back on those dark days and know that it did get better. And it will continue to get better. If I’m willing to put in the effort and time on my part, the darkness won’t hang around forever. Part of why I’m so open about my own struggles is that maybe my words can help someone else. If someone else can benefit from my experiences, no matter how terrible, then it’s worth it.
A moment I’ll never forget was as I was driving home the day I’d heard Emily had died. I was driving past the exit to get to her house and I saw a rainbow over about where her house was. It hadn’t been raining that day and there was really no reason to see a rainbow. I took it as a message from her that she was okay and in a much better place. Rest peacefully, Cory. The pain is over now.
I managed to score an appointment with the neurologist yesterday afternoon. I got more details about the whole situation. There’s nothing horrible like a brain tumor or cancer in there. It’s definitely epilepsy, though the nurse told me the wrong part of the brain the first time. Apparently it’s my right temporal lobe and not my right frontal lobe. I’ve got a rogue piece of gray matter hanging out in there that’s kicking up trouble. She said it’s probably been there my entire life and something triggered it to get it seizing up. I don’t have to do the video EEG unless I want to consider surgery. I view surgery as a last ditch effort, so we’re going to keep tinkering with the medication. She said I can be on up to 3 medications before they’ll consider surgery. I’m on my third full day of the 2000mg / day dosage and it seems to be working. I had one seizure in the middle of the night the first night I increased the dosage. I’m still on a fairly low dose and it’s a very safe medication. They give it to pregnant women, so that made me feel better. She also gave me carte blanche to take Benadryl to help me sleep. Since not sleeping well is a trigger for seizures, she told me to use it when I need it. I still woke up a few times last night, but I slept so. much. better. I made myself stay up until 11 to see if that helped with waking up around 530-545. It didn’t, but I’ll keep trying. As Boyfriend pointed out, maybe I’m not one of those people who needs 8 hours of sleep. Maybe my body can function on less. I may just give up and instead of tossing and turning for an hour, just get up when I wake up around then. My mom pointed out that I was definitely a morning person when I was little. She claims she was the only person who knew what was on TV before the Today Show. I suspect she wasn’t the *only* one.
She also said that depression was more common in people with epilepsy. That was a relief. I was beginning to feel a bit nuts for being so down about all this. It’s nice to know that it’s not me, it’s my brain chemistry. I’m currently waiting for a call back to schedule an appointment with a psychiatrist to discuss antidepressants. I probably should’ve done that a while ago, but better late than never. That might be the last little boost that I need. Until then, I’ve got my Benadryl and the Keppra. She wants to see me every 4 to 6 weeks just to check up on me for a while. The goal is to be seizure free and I think that’s doable. I’m happier now that I’ve gotten more details and feel like I know which way we’re going with this. The next step is the antidepressants and then I suppose we’ll keep tinkering from there.
I’m glad it’s Friday. Tonight is dinner with a couple we haven’t seen in a while. Tomorrow is the thrift store in the morning, then a birthday party tomorrow night. Sunday will be whatever strikes our fancy, but I think shooting things might be fun. We haven’t done that in a while. For now it’s back to work and contemplating what I want for lunch. Deep life choices.
Got the results back from the MRI. Well, sort of. I didn’t get many details other than there are “changes” to my brain that the doctor thinks are a result of seizures, not the changes caused the seizures. It’s also not normal to still be having seizures after 10 days on the medication, so she doubled the dose. I’m on my second full day of the double dose and I’m definitely feeling better. I had a seizure in my sleep last night, but at least it wasn’t 3 in less than 24 hours. My anxiety has also gone down significantly (much like what happened the first time around). I’m still keeping track of how often I’m having them and if they start to get bad again after a week or so, I’ll call back and we’ll try something else. I read online that it can take several years to figure out the right combination of meds, so I’ve lowered my expectations accordingly. I also read that taking B vitamins can help, especially with this specific medication. Thus I bought myself some B complex from Whole Foods yesterday and we’ll see what happens. B vitamins are supposed to help your mood in general, too. Can’t hurt, right? The doctor wants to see me in person for a follow up, but the first date that was available was August 30. She has me scheduled for the inpatient study on August 14. That confused me a bit. Wouldn’t she want to talk to be about the EEG & MRI results before the inpatient study? I’ll call and ask probably later this week. If she doesn’t want me to do it, I’m not going to waste my time (or money. It’s not a cheap test). I have a feeling she does still want me to do it, it’s just a matter of when. Best to confirm, though.
I took about 5 minutes to do some breathing exercises and stretching before I left for work. I definitely think it helped. If nothing else, I started the day off on the right foot. It’s not like it’s a huge time suck in the morning and I’m a big fan of the instant results.
In other news, BabyWatch 2013 is over. He arrived yesterday 11 days late much to the relief of his mother who was convinced she was going to be pregnant forever (as I hear happens at the end). Yours truly was also 11 days late, so I maintain it’s a sign of good things to come. He’s also exactly 11 months younger than my niece. I like easy to remember birthdays (though Boyfriend claims I’m magical when it comes to remembering birthdays). The standard issue flying monkey has been procured and I await the invitation to meet him and deliver it. I do believe that’s the last of the babies for a while. Famous last words, right?
I’m going to throw a bit of a temper tantrum. I know bloggers are supposed to compartmentalize, but that’s just not me. Part of this blog is me being authentic and putting it out there. And I’m one frustrated little kitten right now.
I didn’t get any results on Friday. I called around 4p and the person I spoke to said that the nurse was talking with the doctor, but he couldn’t guarantee that I would get a call. Sure enough, no call. I’ve been on the medication for about 10 days and I’m still having seizures. Is that normal? Is this just a trial run to see if this is a good fit for me? How much of this is the treatment? Will more be coming down the pike? I had one at 3a that woke me out of a dead sleep. That hasn’t happened in a while and I thought the medication was supposed to stop or at least diminish them. Maybe I’ll get some results tomorrow and finally be able to get some of my questions answered. I feel like I’ll never be one of those people who can just let things roll off their backs. Maybe that’s the control freak in me. I hate not knowing what’s going on and doubly so when it’s about me. Though I suppose that’s human? At least the refund arrived on Friday. That softened the blow a bit.
It’s been raining a ton more than I ever remember it raining in the summer around here. It rained pretty much all day on the 4th and pretty consistently Friday and yesterday. Normally I’m a fan of rain, but this is starting to get a little depressing. Mostly because it cramps my style. Cute flats don’t do well in puddles. 😛 But we spent a fun afternoon in yesterday with several other couples playing games and enjoying each other’s company. Jo still hasn’t had the baby yet and I know she’s more than ready.
But it’s the start of a new week and things are looking promising. Tomorrow some of the aerial trainers and students are doing a girls’ dinner out. I haven’t been to the gym in months since aerial work isn’t advised while they’re figuring out my head issues, so it’ll be nice to see everyone. Tuesday I can finally go back to ballet. I’m sure some physical activity will help my mood. Wednesday is support group and I can finally update all of them on the seizure situation. Thursday and Friday are still up in the air, but by that point I’ll probably want a night in. And payday is Friday. 😀 I’ve got a tropical scented candle burning, Boyfriend will be moved out of his current apartment in about a month, and I’m going to Anthropologie later to buy myself something pretty. Answers will come.
What does one do to take one’s mind off not having MRI results yet? Put on pink lipstick and post pictures of cute, furry baby animals. Mais oui!
Hope everyone has a great weekend!
MRI went. They didn’t tell me they wanted to do it with contrast dye, so I got an IV without knowing about it in advance. That was irritating. I feel like I’m dealing with so many different departments and people, they all err on the side of not telling me anything. Otherwise, it was relatively painless. The tech said the doctor should have the films by the end of today at the latest, so if I call on Friday and rattle some cages, something should fall out. Hopefully I won’t have to stomp on it. I haven’t spoken to the doctor at all since I had the initial appointment, so I’m not sure if I even have an official diagnosis yet. I would like to think so considering they put me on the medication, but who knows? I should also *finally* have my refund from them either Friday or Monday.
I’ve decided since the first half of 2013 has royally sucked, that can only mean the second half is going to be awesome. I’ll blow my CFA Level 1 out of the water in December. I’ll get a promotion and a $10,000 raise (hey, might as well dream big, right?). I’ll get to travel. I’ll get all this seizure nonsense sorted out and start to really get better. All my legal issues will be officially behind me. I’ll get to meet my newest surrogate nephew. I’ll go back to dance, tone up, and have the best body I’ve had in close to a decade (for those keeping score at home, I’ve lost 17 lbs since March 24). I’ll get rid of this crappy Android phone, change my phone plan, and save $430/year by switching service providers. I can start slowly acquiring every houseware Anthropologie sells in the anticipation of furnishing a new place in a few years. And I have tomorrow off and that’s always a reason to be positive. Everything will only go up from here.
Hope everyone has a lovely and safe 4th of July. Don’t do anything I wouldn’t do.