Long Time No...

Yeah, I haven't been posting in here. I've been much more open about my seizures, etc., in Facebook. And since I have no idea if anyone reads this, Facebook seems like a more productive platform. But we'll see. I'm not getting rid of this yet.

Little Giggles

Nothing major has happened since the Grand Mal at school. But there have been a few amusing things.

I had one that was just my shoulder. The whole time it was happening, I kept thinking how funny it would have been if it had been in public. Anyone looking at me would have thought I was trying very poorly to flirt with them. Try it in a mirror, you'll see what I mean.

I also had a seizure while taking an Epsom salts bath. I like to think that the result was pretty close to what a jetted tub would feel like. So I felt a little bit rich.

Well, it was Bound to Happen…

On Friday, I had a Grand Mal seizure at school for the first time. I spend enough hours there, the odds were ever in favor of it occurring. I had a loose plan of action set up, and it was carried out well. I managed to get out of the classroom, get my class covered, and get to a room that didn’t have any students in it. Lucky for me, one of my best friends was on his planning period, so he was able to help guide me out of it. Unfortunately, I did a good amount of bouncing on the floor, which is not very well padded. I definitely ended up with some bruised ribs.

The school nurse ended up covering my class. She didn’t quite understand why she was doing that and the teacher was helping me but I think I was able to explain it to her. And she took it all in stride. And my friend had seen my seizures before, but never one that big or all-consuming. Because I never lose the ability to communicate during them, I was able to talk him through everything. And he did a wonderful job.

I’m really kind of lucky, you know?

Weird/Funny

 OK, so my right leg has been getting longer for the last hour. Just the right one. I sat down for a while, and when I got up, I couldn’t figure out how to walk without turning… I can look at my legs and see that they are the same length, but when I’m not looking, the right one is about 5 inches longer than the left now. I can barely walk from the movie room to the kitchen without hitting the wall several times. Not even going to attempt to get a beverage…

Ooooops

My bad. 

I keep waiting for something funny to happen. Nothing really good since the 'lady' in the grocery store. 

Lots of seizures. I had bilateral "fiddle head ferns" happen for the first time. Woo-hoo. 

Just trying to get through, ya know?

Tonight's Post from Facebook, Word for Word:

 

I was going back and forth as to whether I should post this story, but then I realized that it points out the huge need for more knowledge and understanding, so... here goes.

For those who didn't know this, I have a seizure disorder. I have 15-40 seizures per day, mostly so small that I can hide them. Well, I was shopping at Fred Meyer, and a pretty strong one came on, just in my right arm -- not unusual. So I let it happen and kept shopping. This woman came charging up to me, looking like she was going to blow a gasket. I was just about to explain to her that I was fine, nothing to worry about, when she said, "You shouldn't be doing that, moving like that! It looks like you are imitating a seizure, and someone with epilepsy could see it and think you were making fun of them! Just stop it!"

I stared at her for a moment, not moving other than my arm. Then I busted out laughing. Maybe not the best reaction, but that was what came out. She did not like that. "This isn't funny! I should have you kicked out of the store! This isn't funny at all!" The best I could come up with was, well, yes, it was indeed funny that she would walk up to someone who was having an epileptic incident and say something like that. Yeah, that didn't go over too well either. "You're not epileptic -- you're not foaming at the mouth!" Yeah, more laughing and more seizing.

An employee came up to us and asked if something was wrong. The woman again accused me of making fun of epileptics by "pretending to wiggle" (huh?). He looked at my arm, then looked at her and said, "My sister is epileptic. She has unilateral limb seizures just like that all the time. This is real." She looked at him with her mouth open, then looked at me, then back at him and said, "Oh, so you are in on this too? You're both in on this?" After a beat, he and I both started laughing. "Well, I never!" and she stormed out.

I offered to help him put her groceries away. He said, "No sweat. Totally worth it. This story is going to have my sister in stitches."

Meh...

Nothing much to talk about. Some strange seizures, but not that strange. Some unusual pains, but nothing terribly unusual. On my third foster dog, who I thought would be adopted quickly, but he's been with us over a month now. Summer show went well, school has started. I'm keeping the weight sort of down. 

I guess a lack of excitement is a good thing. 

Oh, No, You Didn't!

Awakened at roughly 5:45am by a long, rolling earthquake. I like earthquakes, so I didn't panic, but I was surprised by how long it lasted. Then I started to go back to sleep... until I realized that none of the dogs had made a peep. So I hopped on Facebook -- no posts. Went on the earthquake app on my phone. Nothing. 

 

Dag-nabbit, seizure! That was an evil trick to play!

The "Perfect" Storm

I have a foster pup right now, along with my three boys. It is definitely a challenge even though he's a wonderful dog, and for the most part the boys are getting along quite well with him.

Then came the storm.

Linus was in my lap. Dodge (foster) was on the ottoman, using one of my legs as a pillow. A little more suddenly than usual, I had a fairly major bilateral leg seizure come on. Linus knows what to do -- he got off of me in order to sit right next to me until it started slowing down. Dodge, of course, had not experienced such a thing. He thought I was playing with him... so he naturally thought the thing to do was to attack my legs. Linus went into full protection mode. He was ready to tear Dodge apart. I was still fully seizing, but knew I had an emergency on my hands. While commanding both dogs vocally, I managed to stand up on thoroughly shaking legs. I got a hold of Dodge and pulled him through the room to the kennel room, and got him into his kennel. I made it most of the way back to the couch before the legs gave out. Linus was going crazy between barking at Dodge and checking on me. Mr. B was pacing in the corner; he generally has a tough time with my seizing. Buddy was on alert but stayed on the far edge of the couch the whole time. The legs finally started slowing down, and Linus climbed on top of me, remarkably calmly. He knows what I need most. I held him for longer than usual. When I was able to get up, I closed the kennel room door and curled up on the couch again. Buddy had relaxed once Linus was on me. Mr. B, bless his heart, then took over Dad-watching duties, and curled up with me. Linus saw that everyone in the room was okay, grabbed his blanket, and made a bed on the floor. 

The storm passed. The next morning, Linus and Dodge were at peace with each other again. But I remained sore for two days... a small price for all four dogs making it through the hurricane.

Getting Tired of This...

 Good news/bad news sort of thing...

 

Yesterday was one of those days when Chronic Fatigue Syndrome ruled the roost, all day long. I still got two good dog walks in, and met a friend at a local eatery, but was dragging the whole time. I did almost nothing else. 

 

But where is the good news part, you ask?

 

I can't remember the last time CFS owned me all day long. Honestly, no idea. So with the seizures getting worse, I sure am glad to realize that something is getting better!

Something Old, Something New

 Today I had one of the fiddlehead fern kinds of seizures -- where my arm (almost always the right one) curls up and locks in that position. Nothing new about that...

Except...

It happened while I was going through the dollar DVDs at Cash America. I was holding four treasures that I'd found in my right hand. It curled up around them. I kept shopping, figuring it would loosen up before I was done. No such luck. I got to the counter to buy them, and my left hand could not get at the correct angle to pull the DVDs out of my grip. I had to ask the cashier if she could pull them out, explaining that I was having a seizure and couldn't let go of them. She asked, with huge eyes, if I needed her to call an ambulance. I told her that I was fine, it was a normal occurrence for me, and that no medical assistance was needed. I just couldn't get the cases out of my hand for her to be able to ring them up. She pulled them out, rang up my order, and watched in a bit of awe as I signed the credit card slip (legibly!) by sticking the pen between two fingers and moving my shoulder appropriately. She asked if a bag would help (no thanks), then handed me the DVDs with the receipt neatly wrapped around them. Then, bless her heart, "Is it okay to say have a nice day?" It's just fine.

Holy Crap...

 What a day.

Work was not bad. Weird weather -- rain and snow mixed in the morning, then just snow. In May.

 

Then a followup with the eye doctor, and all the fun light-based tests that go with that. And all the seizures that go with that. Yeah. Somewhere between four and seven of them. At one point I was on the border of a Grand Mal, there in the waiting area between tests. Not amused. But made it through. And the eyes are doing pretty well.

 

Home time was pretty unremarkable. I couldn't do my dog walks thanks to the weather, so I did the treadmill. And then I started to seize on the treadmill. Totally unexpected since I was still moving, not stuck in one position.

 

I'm still recovering, 45 minutes later. Now you understand the title to this entry.

And Now For Something Incompletely Different!

 But it is a new twist for me. Well, yeah, that too.

 

Yesterday I had both kinds of seizure at the same time. My right arm locked up, but then started shaking while still locked up. I have not had both at once. Well, it's pretty painful. And I was at work. One of my best friends there was on his prep period and walked by the door. I asked him if he could cover my class for a few minutes, and he stepped right in. I went to the staff lounge to run my arm under cold water, and the lock unlocked within about 20 seconds. The shaking part of the seizure relaxed soon after that.

 

But here's the kicker. And yes, I think it's funny now. I was shaking hard enough that I managed to sprain my wrist in the process! Only me, right? It's a mild sprain, and really not hindering anything to speak of. And who knew I could do that to myself? I'm a very special guy.

No News Is

 Yeah, whatever.

 

Seizures have been taking over the spotlight, and they are not that fun to blog about. Like today: first day back from Spring Break. Seizures were kind of minimal, both in quantity and strength. Cool. Running an errand on the way home from work. Had one so bad in the store, I almost started crying. Two hours later, my arm still hurts. Not acceptable. 

 

And really not interesting to blog about.

 

I'll try to have something more amusing happen some time soon.

A Mixed Bag

Christmas vs. Boxing Day

Okay, so I had a really nice Christmas. The morning was spent hanging with the dogs. Then late morning through the evening, I went to a friend's house for spaghetti and watching a great Netflix show -- God's Favorite Idiot. Very minimal seizing, minimal pain, a great physical day. Good food, good company all day.

Then came the 26th. Ugh. I woke up with a full migraine. None of my four limbs were obeying commands. Pain levels were high everywhere. Equilibrium was off; I'm not sure how much of that was because the legs weren't working, but it was off even when sitting. It took 25 minutes just to get out of bed, down the stairs, and letting the dogs out. That is usually 5-7 minutes. I gave up after about an hour, and went back to bed. 90 minutes later, I was in a bit better shape, but still what I'd call bad. Now it's 10 at night. The limbs are behaving. The migraine is minimal. The pain levels are within reason almost everywhere. That's all been gradual, throughout the day. 

I guess I'm glad the 25th was the good day. 

Just a Little Something...

Okay, so this is more about Mr. B than Fibro -- whatever.

I had a Grand Mal last night. As you know, that happens. It was a short one, only about 4-5 minutes. I was on the couch in the movie room. All three dogs were there. Buddy slept through it. Linus sat next to me, not budging. Mr. B's normal reaction is to get as far away as possible and look the other direction. For some reason last night, he decided that he should be helping me. He came to the opposite side of me from Linus. He put his paw on my left thigh. Linus and I were both looking at him like, what the heck? But he wouldn't leave. He kept staring at my face with his paw on my leg. As much as my leg tried to jiggle him off, he did not give up. As soon as I started slowing down, Linus would normally climb on top of me overall, but with Mr. B still holding my left thigh, Linus put a paw on my right thigh and rested his head on my chest. Although I don't think it helped as much as if Linus had done his usual, it was still kind of cool that Mr. B tried to help... and that Linus was okay with that.

That's all I got.

My Bad...

Yeah, sorry about that. I've thought about posting many times, but never get further than that.

There have been MANY reasons to post since the last one, but I'll just mention a few.

The weight loss has continued to be good news. Several days have been 191. Generally, I'm at 192. Those numbers have been consistent since late September. I'm perfectly pleased with that range. 

Seizures are probably the biggest news. It's not that they are new, just that they are more frequent and more inconvenient. I had a day at school where I'd already had seven or eight before first period was over. Our periods are 55 minutes long. Three of those were medium strength. That's all way over the norm. The big thing to deal with here was my second period lesson plans -- showing a video of a Carnival parade from Rio. Gee, I wonder if 50 minutes of flashing lights and Latin dance music might be bad for someone with a seizure disorder. No, I don't wonder that at all. Luckily I had the foresight part way through first period to let my Assistant Principal know of my concerns, and she covered my class for about 15 minutes of the film in the middle. I went in to visit with one of my best friends at school (this happened to be her planning period). After about a minute, she informed me that she and I were going for a walk, as the tremors she was witnessing made it clear my body did not want to be still. Lousy day, but I felt so taken care of.

Two weeks ago I was out walking Linus when I realized a major one was coming on. We were at the local shopping center, so we made it to the far corner of the parking lot. I sat down on the curb, and Linus sat right next to me. I started shaking violently enough that I couldn't help but lie down. Linus did not budge. I can only guess it was 6-7 minutes in that I started slowing down. Linus delicately climbed on top of me, all 100+ pounds of him. I managed to get one arm around him, and that was enough to give me purchase. My body began easing out of it, and I was able to sit back up in just a few minutes. We were walking again maybe a minute later. That is incredibly fast for the strength of the main event. Again, I felt so incredibly taken care of.

Moral of the story? I'm not alone. Sometimes I have to reach out; other times I don't even have to do that much. Either way, somebody will have my back, convulsing or not.

But On the Lighter Side...

I went over the 200 pounds mark over 8 years ago, and feared I'd never get back under it. Two summers ago I came close, dropping from my all-time high of 224 down to 201, but I could not push it any lower. This spring I was at 218. Twice this week I weighed in at 200.5, my lowest in forever. 

As of this morning, 199! I realize that I may be somewhere in the 200 range again tomorrow, but that's okay, because I know I CAN be under 200, and will be a day or two later. I'm trying for 195 so I can be less concerned about the wobble range, but I'm still pretty thrilled wobbling on BOTH sides of 200. 

This winter, I suspect I'll be back over 210. However, if I can keep the winter's worst numbers dropping, then I can keep the summer's best numbers dropping as well, right?

 Phew...

Ain't Life Grand...

 Not what I'm talking about.

Had a Grand Mal seizure last weekend. Man, I hate those. I still don't lose consciousness, so that's a plus. And it was at home -- I REALLY hate when those happen in public. But I hate them any time, any place. But I did luck out. I was on the couch already. I stayed there. 

And the really good part? Yeah, I actually mean that. The good part was that Linus did his thing again. Buddy didn't seem to notice, and Mr. B got as far from me as he could, his usual reaction. But Linus sat about two feet from me, watching, until I started to slow down. Then he climbed on me. This is such an incredible gift he gives me. It allows me to gain purchase to something, which in turn allows me to regain control of my body so much faster. He's never been trained to do this, but has done it every time I've had a GM at home. I have no idea why, but I'm so grateful for it!

That's all. But I guess I was sort of talking about how aspects of life can be grand after all...

  

Reasonable, or Unreasonable?

Okay, so my least favorite type of seizure to have is a Grand Mal. Duh. Totally reasonable.

My second least favorite is the ones I call fiddle-head ferns. It's where my right arm curls up into a tight knot. Painful, and very difficult to hide from people. I think that is a reasonable choice for second.

Here's the quandary: does my choice for third least favorite make sense? Background -- most of my seizures either start with the right arm or the right leg. Fairly often those stay isolated on the right side, or perhaps they bring in the left leg. They can start in the left leg as well, although this happens much less frequently. 

My third least favorite, you ask? It's when my left arm seizes. Other than the Grand Mals, the left arm almost always gets a break. We must be talking over 99% of the time out of the non-GMs. But every once in a while the left arm seizes, all by itself. And not only does it hurt, it perturbs me off big time. Why? Because that's not supposed to happen! Never mind that seizures aren't supposed to happen. That one really frustrates and angers me. Is that a reasonable or unreasonable justification for it being #3 on my list?

Or is it simply unreasonable of me to have such a list in the first place?