My life has been incredibly busy these past few months due to a dear family member who had been ill. It took a comment from a reader of this blog for me to realize that I hadn't updated in a long, long time.
An update on what has happened since I found out about my syrinx:
I started having crazy jerking motions all the time preceded by strange, strange sensations. The neurologist finally figured out I had herniated disks in my neck and sent me to physical therapy. The PT cured the pain.
The docs didn't know what was causing all of the jerking motions my neck, chest, and legs were doing. They ran a bunch of tests and determined that I wasn't having seizures. 2400 mg of gabapentin and 30 mg of baclofen per day have made the jerking motions manageable.
I no longer have hundreds of them a day. They are called myoclonic jerks, and are harmless. They make me tired when I have them, but are not anything more than a hassle now.
The biggest news is about the syrinx. I had my 6 month MRI, and it hasn't gotten any bigger. The neurosurgeon said that it isn't big enough to be a concern, but that he wants me to have another MRI in a year. In fact, in this most recent MRI, the syrinx didn't show up in most of the MRI views like it had in the MRI I had six months ago.
My vantage point is becoming clearer now that I have found some relief. I'm hoping the fog continues to lift.
Showing posts with label spasm. Show all posts
Showing posts with label spasm. Show all posts
Tuesday, February 28, 2012
Sunday, July 31, 2011
Shakes, No Shakes
This past weekend was very good in some respects and very difficult in other respects. Saturday was the day that was both the hardest and easiest. On one hand, my husband and I took a little day trip to eat out in Dickson, TN. On the other hand, my body decided to go haywire on me. I had several very strong spasms/jerks/jolts while I was eating out. This made me very tired. It caused 4 hours of shaking on my entire my left side after the jolts stopped.
I had been taking tons of pictures, but that stopped for the day.
There were things I wanted to do in Dickson that we didn't get a chance to do because I became much too tired to do much of anything. Walking from the one museum we went to back to our car was the proof to me that I simply needed to go home. Even sitting a cafe to drink a cup of decaf and talk to my hubby would have been too much.
The feeling of defeat at my own body is maddening.
But, it is humbling too. I have limitations. Sometimes they are placed where I expect them to be, and other times they are placed smack dab before me without any warning.
After the little day trip, I slept for almost 14 hours straight.
Today, I went to church, then to work for a few hours. I only worked for a fraction of the time I had expected to work. This was partly because I found lots of beautiful things to take in with my camera since my hands weren't shaking. It was also partly because I am still very, very tired.
I only had a handful of spasms/jolts today, but the ones I have had have made me stop and let myself become tired and not fight the fatigue.
So, this weekend's blog post is about the different moods I have been in. These are all pictures I took yesterday or today.
Peace and hugs,
Jen
P.S. I have been asked by a few people what model of camera I have. I take all of these pictures with my phone. I don't use a special camera. Just a Droid 1. Nothing with a zoom lens or anything. I simply take pictures of what I see around me with my phone.
I had been taking tons of pictures, but that stopped for the day.
There were things I wanted to do in Dickson that we didn't get a chance to do because I became much too tired to do much of anything. Walking from the one museum we went to back to our car was the proof to me that I simply needed to go home. Even sitting a cafe to drink a cup of decaf and talk to my hubby would have been too much.
The feeling of defeat at my own body is maddening.
But, it is humbling too. I have limitations. Sometimes they are placed where I expect them to be, and other times they are placed smack dab before me without any warning.
After the little day trip, I slept for almost 14 hours straight.
Today, I went to church, then to work for a few hours. I only worked for a fraction of the time I had expected to work. This was partly because I found lots of beautiful things to take in with my camera since my hands weren't shaking. It was also partly because I am still very, very tired.
I only had a handful of spasms/jolts today, but the ones I have had have made me stop and let myself become tired and not fight the fatigue.
So, this weekend's blog post is about the different moods I have been in. These are all pictures I took yesterday or today.
Peace and hugs,
Jen
P.S. I have been asked by a few people what model of camera I have. I take all of these pictures with my phone. I don't use a special camera. Just a Droid 1. Nothing with a zoom lens or anything. I simply take pictures of what I see around me with my phone.
Saturday, July 9, 2011
Why the Flames?
Why the flames in background?
I chose flames because the sensations I get from this syrinx vary, but one of the predominant feelings is burning. Burning and electric shocks. Both have been fairly strong today. I hate looking like random appendages are going haywire. That slight look I get when I make people uncomfortable is a little unnerving at first.
Having a conversation generally helps. It goes something like this:
"Hi, sorry I'm making you feel uncomfortable."
"Um, hi. Do you want fries with that?"
"Yes, please. Oh, by the way, aliens have taken over my body. Pod people, man. Pod people." [Insert my arm, neck, or leg having a violent spasm].
"Do you want to supersize your order for twenty seven point nine cents more?"
This is the place in the conversation when my brain returns from registering the weird sensation that just caused my body to do the strange muscle spasm-tick dance on my left side. I hand the nice young man my credit card and nod because we're both flustered.
Ok, I'm making up the dialog and the aliens. It does make for a more rational explanation for why my body is going haywire than saying, "Oh, no, I don't want to supersize. By the way, I have a cyst inside my spine. Have a great day."
A simple nod and eye contact can take the awkward look away. I don't talk about pod people or aliens or spines, at least not out loud. I hope I don't actually say it out loud. I'm pretty sure I don't. I think I only have these discussions with my friends, those people who know I have vampires and werewolves and whatnot living in my head, so aliens aren't exactly a stretch.
Flames and electricity are such bizarre sensations that they are the closest way to describe what this syrinx does to me.
I took a brief walk today before I realized it was hot enough to melt candles and people and whatnot. Then, THEN the jolts started in my left leg and foot. This was the first time I had jolts that were entirely independent of the neck/arm/shoulder jolts.
But hey, I can still walk. I can walk, although now it hurts to walk and I limp. I am convinced this is how the aliens mark their prey. They catch people the first time around and have a little fun with cattle prods. Then, when they actually get hungry or want to conduct medical experiments, they can find us easily because we limp from the first go-round.
Yep, that's it. That's the reason all this crazy, random stuff is happening to me.
That, or I'm supposed to learn something from all of this. I'm trying. I really am.
I think I have learned to still appreciate that I got to go on a walk. And eat ice cream. And go shopping at a big box discount store without requiring the use of a scooter or any other assistive device.
And I'm still able to type, blog, and work on other writing. Just a second ago, when I got a jolt of fire into my foot, I had to stop typing for a few minutes because the pain made my vision go blurry until the electricity stopped. This one was burning electricity, not anything that induced limb movement.
I shall be grateful that my vision came back from being blurry.
I smell a metaphor or imagery here. Does pain ultimately make me see more clearly? Is that what I'm supposed to learn? Perhaps. Time will tell I guess. Perhaps taking nighttime meds will give me greater perspective on the grander scheme behind all this.
Peace and hugs,
Jen
I chose flames because the sensations I get from this syrinx vary, but one of the predominant feelings is burning. Burning and electric shocks. Both have been fairly strong today. I hate looking like random appendages are going haywire. That slight look I get when I make people uncomfortable is a little unnerving at first.
Having a conversation generally helps. It goes something like this:
"Hi, sorry I'm making you feel uncomfortable."
"Um, hi. Do you want fries with that?"
"Yes, please. Oh, by the way, aliens have taken over my body. Pod people, man. Pod people." [Insert my arm, neck, or leg having a violent spasm].
"Do you want to supersize your order for twenty seven point nine cents more?"
This is the place in the conversation when my brain returns from registering the weird sensation that just caused my body to do the strange muscle spasm-tick dance on my left side. I hand the nice young man my credit card and nod because we're both flustered.
Ok, I'm making up the dialog and the aliens. It does make for a more rational explanation for why my body is going haywire than saying, "Oh, no, I don't want to supersize. By the way, I have a cyst inside my spine. Have a great day."
A simple nod and eye contact can take the awkward look away. I don't talk about pod people or aliens or spines, at least not out loud. I hope I don't actually say it out loud. I'm pretty sure I don't. I think I only have these discussions with my friends, those people who know I have vampires and werewolves and whatnot living in my head, so aliens aren't exactly a stretch.
Flames and electricity are such bizarre sensations that they are the closest way to describe what this syrinx does to me.
I took a brief walk today before I realized it was hot enough to melt candles and people and whatnot. Then, THEN the jolts started in my left leg and foot. This was the first time I had jolts that were entirely independent of the neck/arm/shoulder jolts.
But hey, I can still walk. I can walk, although now it hurts to walk and I limp. I am convinced this is how the aliens mark their prey. They catch people the first time around and have a little fun with cattle prods. Then, when they actually get hungry or want to conduct medical experiments, they can find us easily because we limp from the first go-round.
Yep, that's it. That's the reason all this crazy, random stuff is happening to me.
That, or I'm supposed to learn something from all of this. I'm trying. I really am.
I think I have learned to still appreciate that I got to go on a walk. And eat ice cream. And go shopping at a big box discount store without requiring the use of a scooter or any other assistive device.
And I'm still able to type, blog, and work on other writing. Just a second ago, when I got a jolt of fire into my foot, I had to stop typing for a few minutes because the pain made my vision go blurry until the electricity stopped. This one was burning electricity, not anything that induced limb movement.
I shall be grateful that my vision came back from being blurry.
I smell a metaphor or imagery here. Does pain ultimately make me see more clearly? Is that what I'm supposed to learn? Perhaps. Time will tell I guess. Perhaps taking nighttime meds will give me greater perspective on the grander scheme behind all this.
Peace and hugs,
Jen
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