It took me long enough to have a seizure, damnit, and WOW! I had 8 of them. They want me to come back for the memory study, but that will be done on an outpatient basis.
It’s good to be home. It’s good to be back with my family. But I’ll be happier when my back stops hurting.
I don’t remember my last few days in the hospital. The seizures must have hit close together.
The study showed that my seizures are, indeed, generalized. They aren’t localized to one area of the brain or the other. I’m not sure what happens next. I need to follow-up with my neurologist. But I have a feeling that surgery to get rid of the epilepsy is out of the equation (and part of me is relieved). Still, we know more than we used to, and we’re still getting a memory study done. But it will be done on an outpatient basis. I know every seizure can affect your memory, so I’m eager to get this done.
So last night we did the sleep deprivation thing again (Wednesday, Day 4). I chose not to go to sleep at 3:00am, because I was still wide awake. Instead, I stayed up all night long. It’s now 4:15pm on Thursday. I’ve been awake for 31 hours 15 minutes, and I’m still going.
Last night/this morning, when it was dark outside, I watched strobe videos on YouTube. I re-watched Stranger Things Season 3 (for those who don’t watch, it has a photosensitive warning). The first time I’d seen season 3 I had to look away in all the “strobe” scenes. I felt like I missed half the season. Last night I got to see everything I missed.
As of this morning, I’m completely off my seizure control meds. Tonight I’ll have missed 2 doses. My husband came to see me this afternoon. He thinks I’m going to seize tonight. He says I’m showing some of the early warning signs that he’s learned to notice. Things like the look in my eyes or something about how my moods swing back and forth erratically. I hope he’s right, because I could have sworn I heard another person in my room while we were talking. Someone male, yawning very loudly. No one was there and he didn’t hear anything. This could be pre-seizure, or it could be some kind of hallucination because I’ve been up so long. I’m not sure how long you have to be awake for something like that to happen.
Still no seizure. You know, if I were at home doing all these things that normally trigger a seizure, I would have had one long before now.
The doctor says they’re seeing plenty of spike activity on the EEG, we’re just not getting a breakthrough seizure yet. Tonight we’re doing sleep deprivation again, and eliminating one of my seizure medications. The other one is still set to half dosage.
I’m starting to get cranky. This is the 4th day in the hospital. I want to be at home. I miss my family. I get visits but it isn’t the same. I miss hanging out with the dude at night, watching Daily Show and YouTube videos. I miss my husband, watching the ballgame with him, talking with him, cuddling with him…just being with him. I miss our cats and our dogs. I miss the feel of our house. I miss sitting in the den with the windows open, listening to it rain (it’s supposed to rain again this week).
Enough of that.
I’ve always done everything I could to avoid having a seizure, so this “trying” to have a seizure thing is strange to me. But I have this dark humor side that is getting used to it. It’s the part of me that says, “Well, if I have to do this, I may as well enjoy it.” So it’s time to watch all those movies, shows and videos that have seizure warnings. I told the neurologist this morning I’ll do anything I can to help. I really don’t want to be here this weekend.
I’ve never watched a strobe before. They’re actually kinda’ pretty. I wish I could enjoy them all the time.
I had 3 hours sleep last night because they wanted to try sleep deprivation to trigger a seizure. I couldn’t go to sleep until 3:00am and they woke me up at 6:00am. Horrifying. But, surprisingly enough, I was wide awake this morning, just wanting that morning cup of coffee. I’m only having the one cup today. I had way too much yesterday and my stomach is still telling me about it.
Despite skipping the sleeping pill and depriving me of sleep, I haven’t had a seizure. It’s now 4:15pm and I still haven’t had a nap. I’m running on 3 hours sleep and I’ve been awake just over 10 hours, and I’m still going. At this point, I’ve been awake for so long I don’t think I could fall asleep.
Today they’re still trying to induce a seizure. They did something I didn’t expect. My day shift nurse brought me a shot of Everclear!!! Yes, you read that correctly. Everclear; the 190 proof alcohol you can breathe fire with. The alcohol we all tried at least once when we hit legal drinking age, and swore off of after that hangover. They were going to ask me to just drink the shot, down the hatch. WTF??? I said, “No way. Bring me some juice to mix this with.” So, I’ve had a first. I had a mixed drink in the hospital at 11:00am. Day drinking!
You know, the least they could have done is let me drink decent scotch or whiskey instead.
They also gave me a couple of medications that will lower my seizure threshold. Probably something to do with mixing them with alcohol.
The plan for tonight is to let me sleep, but they want me to stay up as late as I can. I’m kinda’ curious to see just how late that will be. I’m still wide awake. They’re also going to skip the sleeping pill again, and cut the seizure control medication dosage in half. If this doesn’t trigger a seizure, I don’t know what will.
They have their baseline EEG from day one. Now the fun begins.
Today I’ve been drinking tons of coffee. I’ve had six cups of hospital coffee. Now, I gotta’ tell you, I’m drinking the coffee the nurses drink. They drink some strong coffee. OMG, I haven’t had this much coffee in so long.
I’m trying to stay awake tonight. They’re dong sleep deprivation on me. I have to stay up until 3:00am, and they’re going to wake me up at 6:00am. This is terrible!!! No naps tomorrow, either, until the doctor ok’s it, so I’m living on coffee again tomorrow. Of course, they’re also skipping the sleeping pill tonight.
Today I met the head of neurology. Evidently, she makes it a point to visit all the patients in the Epilepsy Monitoring Unit. I was impressed. She was very knowledgeable and answered my questions about my testing schedule for the rest of the week. Memory test should be tomorrow, providing their department is available. She also correctly set my expectations about my stay here… It may be longer than 5 days, “depending on how you perform,” (direct quote). In other words, if I don’t have a seizure, I stay until I do. Joy….
Fingers crossed. Maybe with the caffeine intake and sleep deprivation I’ll have one and get it over with tomorrow.
I know this blog is called Menopause Express, and my intentions when I started it were to stay on topic, but you know what they say about the best of intentions and that road.
I was diagnosed with epilepsy at the age of 10, so I’ve been used to the seizures for a long time. I’ve always been lucky, though. I was considered well controlled. After the hormonal changes of my teen years I’d go about 5 years between seizures. But as I got older, 5 became 3, then 2….then months… This year, since January, I’ve had about 5-6 tonic clonic seizures (full convulsion). This includes the times I’d have 2 in one day. I’ve also had 4 complex partial seizures, which can develop into tonic clonic seizures, but they didn’t. On top of these, I’ve had a couple of simple partial seizures, where you just appear to “space out” a minute. I realize it happened, note it in my diary, and move along. Twelve, total, according to my neurologist, when I saw him in late June/early July. Roughly in a 6 month period.
I’ve tried countless medications. They either stop working, don’t work, or I have horrible reactions to them.
He says I have medicinally resistant epilepsy, which sounds a bit frightening to me. But that’s why I’m here today.
We drove in this morning to check-in at the gawdawful hour they wanted me to be here. We decided to leave early to allow ourselves time to get lost, as this was right in the middle of the “medical district” in Houston, where tons of hospitals are, and this particular hospital is HUGE!! While I’m not an early riser, I must say, sunrise over downtown was beautiful. Unfortunately, I was not awake enough to get a picture.
Check-in was…confusing. I’ve been here all day and no one has taken my co-pay yet. But, I seriously doubt I’ll get out of this for free.
On day 1, they do an MRI first. Being the claustrophobe I am, I took my Clonazepam and went with the nice gentleman. We got in there and he covered me with warm blankets, and did something new: he put a nice warm blanket around my head so I could cover part of my face and hide!!!! Oh, this helped so much!!! I went right to sleep and didn’t wake up until it was over.
Once back in my room, it was time to hook me up to all the wires. I feel like I could communicate with satellites now.
Yeah.. And this is how I’ll be for the next few days. Hopefully, I’ll be able to do daily updates. They actually *want* me to have a seizure in here, so, I don’t know how I’ll feel after that. Why, you ask? Why do they want me to have yet another one? Because they’re trying to pinpoint the area of the brain they come from. I don’t really like the idea of having yet another seizure, but if it helps in the long run, and if I don’t go into one of those seizures you can’t come out of, well, I’m in the right place.
Ok, fine. I’m terrified. But they’re good at explaining everything, right down to the why’s, and easing concerns as much as possible.
I left off with “I hate moving!” You should know what’s behind that story.
In January of this year, I moved a few hours north. Not out of state, but a bit of a drive. I was closer to friends and family that I rarely see, and I thought this would make me happy after all that time of being at the bottom of the dark pit.
I discovered a few things when I got up there, though:
My health took a serious nose dive
Friends and family all have things going on, just like everyone else.
We don’t see each other nearly as often as we used to
We see each other “online”
I kinda’ missed my husband…. Yeah…. I missed him. The good and the bad. Everything.
The part about all of us having our own lives was easy to understand. We grow, life happens, we all change, and we didn’t live as close together as we used to, either. They may call me Duch, but I’ll admit it isn’t all about me, here. But, that’s just between you me, ok? I got a reputation to protect.
But, my health…. Yeah….. my health was getting really bad. I had to move back. I wasn’t happy about it. I hate moving. But it had to be done. We set the date for the beginning of August.
BUT, the best laid plans….
I’m not going to bad mouth my previous apartment complex. The manager was very helpful in trying to make things right when they went drastically wrong that last week I was there. However, as with any business, there is always room for improvement. I will say that he bent over backwards to make the best of a bad situation, especially given my health issues. Let’s just say mold is a horrible thing. My health was bad enough; I didn’t want to add anything else to the list off problems. All this caused me to step up the move date unexpectedly by about 2-3 weeks. No stress here!
I’m at my husband’s now. Remodeling is almost done. Mount Boxmore is in the front room, and I’m trying to find a place for my stuff. Things will gradually fall back into place and normal will happen again.
So…. This is the lengthy version of “I Hate Moving”. You’ll see more from me when Mercury is out of retrograde. Damn, this was hard to write.
I’m not old yet. I just wish my body would stop trying to say otherwise. I’m going to be 52 this month. That’s really not that old. But I laugh as I remember a time when I thought it was.
Ever feel as though your body has turned into that rebellious teenager you can’t control, and it’s doing everything you don’t want it to, just to spite you? You don’t want to feel old, so it’s going to do everything it can to make you feel like your aging mother or grandmother you remember from childhood. :: sigh ::
I shouldn’t sound so pessimistic. It’s not always like that. It’s just that, sometimes you have those days that you want to trade your body in for a new one, y’know? Oh, and seeing your own kid with that lack of fear of mortality…. Gods above, I miss that.
I suppose today is just one of those days. I’m writing to show that menopause, and getting older is no picnic. I don’t want to be grandma. As I get older, I want to be like this chick:
I’m a lucky mother. My son is 20 years old. When he went through those teenage years, he wasn’t a “rebellious teenager”. We have a good relationship and it’s always been that way. We’ve always been able to talk to each other. Now, as with any relationship, there are days you can do better on your communication…
I’m sure that’s what goes on with your body as you age. Everything is changing and you have to learn how to communicate with each other all over again.
Just over a week ago, I was diagnosed with an abscess in my sinuses. This one was hard – I haven’t been that sick in a long time. This infection hit me sudden, hard, and it was painful.
Despite being on two different antibiotics at the same time, it seemed this thing was only getting worse. I had no energy (of course), so I killed my time on Facebook. After a couple of days of that, it just felt like I was being bombarded by nothing but negativity. I didn’t want to communicate over Messenger or Facebook. I just wanted to hide under the bed. No special treatment for anyone. I just wanted to get better.
Sure enough, as soon as I went offline, I started to feel better. It was a gradual process, and it took just over a week, but I feel better. I’m not saying this is what cured me; the antibiotics did a world of good, too, I’m sure. But depriving myself from the negativity probably helped.
I told people that they’d probably see me back on Facebook sometime this week (thinking, after Monday), but, honestly, if I wasn’t running someone’s business page, I’d probably delete my account after this. I still don’t want to go back online there.
There’s enough negativity in this world already. Do we really need to bombard ourselves with more of it every day by using a social media platform that sells our private information to the highest bidder, anyway?
If you aren’t familiar with Spoon Theory, go get a copy of Furiously Happy, by Jenny Lawson, right now. Also, start reading her blog. Gods…. if you haven’t been reading The Bloggess, what rock have you been hiding under all these years?
In Furiously Happy, Jenny Lawson explains “Spoon Theory” in detail. I’m giving her full credit for it here because it makes so much sense and explains the whole “I just can’t…” part of Depression. Let me explain.
First, let’s take a young, perfectly healthy person. This person wakes up in the morning with a full set of spoons. All the things they have to do that day require energy. You have a spoon for everything you need to do. You already got out of bed. That’s a spoon. Eating, caring for people, going places, cleaning house, working…. you get the idea. And at the end of the day, this young healthy person has spoons leftover as he or she goes to bed. When they wake up, the Spoon Fairy has arrived with this fresh supply of spoons for the day. Voila! Infinite spoons!
But if you’re sick, that affects the number of spoons you get that day. If you’re battling mental illness, you start to see those spoons dwindle. There will be days you wake up and the fairy only left you 3 or 4 spoons. That’s all you get for the day and you have to make them last. You have to be selective with your spoons.
You haven’t seen a post from me since … oh …. June of last year, because I haven’t had the spoons to write. Today, I sit and write about Spoon Theory. I’m still in my pajamas. I haven’t had a shower or brushed my teeth. I haven’t eaten. I haven’t brushed my hair. If my husband hadn’t called me to ask me a question, I probably wouldn’t have said one word to anyone. By the time this post is complete, I may be out of spoons; I’m not sure yet. I may have a couple more. I hope I do.
You always seem to get 1 spoon. You woke up. You aren’t dead today. But, yes, that requires a spoon, because the energy that comes pouring in when you wake up…. all the mind chatter and the self-talk you have to fight.
“OMG, can’t I just lay here?”
“No. you have to get out of bed. How can you tell your kid he can’t stay in bed all day if you just stay in bed all day?”
So by the time you guilt trip yourself, you’ve spent a spoon just waking up.
If you only have 3-4 spoons that day, you decide how to spend them. Personal hygiene may have to be put off until the next day. Or the next. Or the next. Some day when you have enough spoons or until you just can’t take it anymore.
You start valuing relationships on a whole new level. Friendships change. Long-term depression will do that to people. But it comes down to talking about what’s wrong and why you don’t feel like this person doesn’t have your back. You tell yourself that this person just has too much going on right now and it isn’t the right time to talk, but in reality, you just don’t have enough spoons to have a conversation.
There are days when I wake up with one spoon and I just want to cry. I know I have to get out of bed anyway and I don’t have the spoons to do it. Those are the days I have to fake it. I have to put up a façade. I become Duch.
Duch is smart, confident, outgoing. She’s anything but depressed. She can damn sure get out of bed in the morning. I put the face on. Oh, and Duch would want to dress up pretty. But, damn… does she have to wear those uncomfortable shoes? So what if they’re pretty? Ok, but she does tell me I look good.
She drags me outside & we go somewhere. Anywhere. Even if it’s to a freakin’ coffee shop. Although, recently, she made the mistake of dragging me to the grocery store (trying to accomplish getting something done while getting me out of the house), but that only resulted in me having a panic attack. Too many people, too crowded. So Duch and I went home with just a few items, got back into the pajamas and drank beer. I was now at negative spoons.
Negative spoons is not a good thing. This doesn’t go away the next day. There is no magickal reset to zero. When the fairy brings your spoons the next day, she subtracts the spoons you “borrowed” against… you know, those spoons that took you into the negative? If you don’t have enough, she leaves you one. She carries the balance over to the following day.
If there is a way to earn spoons, I’d like to know.
But that is Spoon Theory, in a nutshell. Now go read Jenny Lawson’s book. But if you haven’t read her first book, Let’s Pretend This Never Happened, go read that first. And, for chrissakes! Get out from under that damned rock!