I've been absent for quite awhile for a number of reasons. Reasons I'll try to explain.
I received a semi-diagnosis from Mayo Clinic in regards to my seizures. In medical terms: "Voltage-gated potassium complex antibodies with possible autoimmune encephalopathy." It's a relatively rare disorder involving an antibody in my blood attacking healthy brain cells... Autoimmune Epilepsy.
They're going to start an IV methylprednisolone trial next week at Northwestern Memorial. I'll have the first three treatments while admitted to the Video-monitored EEG unit at NW, then once a week for twelve weeks a nurse will visit my house to administer the treatments. After the twelve weeks, I'll go back to Mayo to see if there has been any improvement. Improvement will primarily be gauged by a pretty horrifying psychological test... the first one I did back in December was just a disaster.
Going back to last year, I can say there was a lot of lost time. I spent my Thanksgiving, Christmas and New Years having my body scanned, blood drained, spine tapped, and psyche picked apart. I understand that it's a essential, but it's physically very painful and emotionally devistating.
I'm still having seizures and they're getting stronger and stronger. I know the VNS in my chest is helping slow down a seizure when it starts, but lately all it's been doing is keeping me awake long enough to feel how truly painful they are.
The title of this post pays tribute to those who've pushed me to document this experience, not only for me, but for others in the future that these posts could help.
Thursday, February 14, 2013
Friday, November 9, 2012
Mayo Clinic Journal: Part One
Mayo Clinic journal part one. November 5-8, 2012.
It has taken my family awhile to urge me toward Mayo Clinic. I've been trying to trick myself into thinking that I didn't need this and the path I was taking was going to pan out somehow; this turned out not to be the case. Since August I have been trying not to be over-stimulated, as to not agitate my emotions and seizures. I've been off Facebook, blogging, even watching the news in fear of these outlets causing me to overflow.
Last week I laid next to Sara with my face in a pillow and agreed to seek treatment at Mayo. She worked to get me in and was resoundingly successful.
---
At Mayo, it's interesting because the hospital in connected to shopping malls and hotels via underground tunnels and skyways. I kept mentioning to nurses and doctors that I missed being outside to breathe fresh air; they would smile and reassure me that the weather was much better inside. We were there four nights and we got out only a couple times; we went to Target to buy new clothes for the next day (and the next) we didn't expect on being there.
---
I had two MRI's done while at Mayo. If you've never had an MRI, it's best for me to say "they're not so bad," even though they do take a bit of strength to get through. I'm slid into a tunnel while wearing a floppy hospital gown and paper socks with ear plugs installed. They tried to make me as comfortable as possible with foam wedges to support my back and head, (these also reduced movement on my part).
I closed my eyes loosely and tried to envision myself somewhere peaceful while the machine pulsed and whined for close to an hour. At first I saw myself walking along a hilly, wooded path that would open up to meadows of sheep or cows, but once the thought of my body being held down in the MRI, I began to feel anxious and afraid. This meant I should instead imagine myself somewhere without movement, watching a play or looking out a window on a train ride. That's exactly what I did; I saw myself sitting in a leather bench seat looking out a train window while crossing a huge bridge over a river. I saw the sheep on a hill and I noticed the grass looking bright green in comparison to the brown trees that were ready for winter. There were little towns in the distance and just before I could ask myself where the train was taking me, the technician was sliding me out of the machine. All I could do was smile.
---
(More soon)
It has taken my family awhile to urge me toward Mayo Clinic. I've been trying to trick myself into thinking that I didn't need this and the path I was taking was going to pan out somehow; this turned out not to be the case. Since August I have been trying not to be over-stimulated, as to not agitate my emotions and seizures. I've been off Facebook, blogging, even watching the news in fear of these outlets causing me to overflow.
Last week I laid next to Sara with my face in a pillow and agreed to seek treatment at Mayo. She worked to get me in and was resoundingly successful.
---
At Mayo, it's interesting because the hospital in connected to shopping malls and hotels via underground tunnels and skyways. I kept mentioning to nurses and doctors that I missed being outside to breathe fresh air; they would smile and reassure me that the weather was much better inside. We were there four nights and we got out only a couple times; we went to Target to buy new clothes for the next day (and the next) we didn't expect on being there.
---
I had two MRI's done while at Mayo. If you've never had an MRI, it's best for me to say "they're not so bad," even though they do take a bit of strength to get through. I'm slid into a tunnel while wearing a floppy hospital gown and paper socks with ear plugs installed. They tried to make me as comfortable as possible with foam wedges to support my back and head, (these also reduced movement on my part).
I closed my eyes loosely and tried to envision myself somewhere peaceful while the machine pulsed and whined for close to an hour. At first I saw myself walking along a hilly, wooded path that would open up to meadows of sheep or cows, but once the thought of my body being held down in the MRI, I began to feel anxious and afraid. This meant I should instead imagine myself somewhere without movement, watching a play or looking out a window on a train ride. That's exactly what I did; I saw myself sitting in a leather bench seat looking out a train window while crossing a huge bridge over a river. I saw the sheep on a hill and I noticed the grass looking bright green in comparison to the brown trees that were ready for winter. There were little towns in the distance and just before I could ask myself where the train was taking me, the technician was sliding me out of the machine. All I could do was smile.
---
(More soon)
Friday, August 24, 2012
Tuesday, August 7, 2012
Friday, August 3, 2012
Sparrow
I killed a sparrow yesterday. I noticed, through my windshield, up ahead was a small bird in the road flapping it's wings while another bird was hovering nearby. I slowed down as to give it time to fly from the street, not thinking it could be injured. As I approached, I lost sight of it in front of me, but as I continued I looked in my rear view to be sure it got away. Instead I saw it still lying in the road only now it's wings had stopped flapping.
You see many animals along the road presumably hit by passing cars, but I cannot remember in all my time behind the wheel having this happen to me.
Later that day, while I was at the office of my new freelance job I had a particularly long seizure. I didn't lose consciousness; I thank my VNS for doing it's job. I left early amongst the piles of work that needed to be done.
In the last three weeks I've had over twelve seizures ranging from small (5-10 seconds) to rather lengthy (10-30 seconds). They all are followed by a postictal period (seizure hangover); depending on the intensity of the seizure, some are painful and some are more tolerable, but they all are incapacitating in one way or another. My concentration, speech and memory are all effected.
I started a new business for my freelance work; the business name is basically a no-brainer for me... Smith J. Ryan Creative. See, all my life I've had to fight for my name. I've been pulled into the principle's office and scolded until a secretary barged in to tell him that he's got the wrong Jeremy Smith; I got a free pencil out of that ordeal. I had the "bad" Jeremy Smith's grades sent to my house and shared a locker with him because the school's office still couldn't figure out that there were two students with the same name in the school.
--
Next Monday I have another EEG scheduled due to the amount of activity I've been experiencing. When I had my interview for the new freelance position I thought I could schedule my first day after the tests so I could get some information and maybe have time to "even out." The company is very busy and needed me right away but I've only been able to help them a minimal amount; frustrating for them I'm sure.
I go back to this subject a lot, but I can't help but have extreme empathy for those with mental disorders, especially those that seem healthy on the outside, to strangers, co-workers, friends, but need special accommodations to live their daily lives. See, it's easy to spot a physical disability (by no means am I saying it's easier to live) but when you tell someone that you have Epilepsy they're nervous around you at first but if they don't see a seizure and they see what looks like a healthy individual, it's hard to tell someone that when you're having a problem you won't be at work, or you can make it to an event... the list goes on.
It's like every year gets harder. We have no money and it's straining our household. I'm trying to apply for disability next week; my phone interview is an hour before I am to be admitted to the hospital which is kind of odd. I'm just very nervous and alone; I get advice but it's all very generic at this point.
My hands are tied and I feel like the sparrow who's flapping his wings but unable to fly away to safety.
You see many animals along the road presumably hit by passing cars, but I cannot remember in all my time behind the wheel having this happen to me.
Later that day, while I was at the office of my new freelance job I had a particularly long seizure. I didn't lose consciousness; I thank my VNS for doing it's job. I left early amongst the piles of work that needed to be done.
In the last three weeks I've had over twelve seizures ranging from small (5-10 seconds) to rather lengthy (10-30 seconds). They all are followed by a postictal period (seizure hangover); depending on the intensity of the seizure, some are painful and some are more tolerable, but they all are incapacitating in one way or another. My concentration, speech and memory are all effected.
I started a new business for my freelance work; the business name is basically a no-brainer for me... Smith J. Ryan Creative. See, all my life I've had to fight for my name. I've been pulled into the principle's office and scolded until a secretary barged in to tell him that he's got the wrong Jeremy Smith; I got a free pencil out of that ordeal. I had the "bad" Jeremy Smith's grades sent to my house and shared a locker with him because the school's office still couldn't figure out that there were two students with the same name in the school.
--
Next Monday I have another EEG scheduled due to the amount of activity I've been experiencing. When I had my interview for the new freelance position I thought I could schedule my first day after the tests so I could get some information and maybe have time to "even out." The company is very busy and needed me right away but I've only been able to help them a minimal amount; frustrating for them I'm sure.
I go back to this subject a lot, but I can't help but have extreme empathy for those with mental disorders, especially those that seem healthy on the outside, to strangers, co-workers, friends, but need special accommodations to live their daily lives. See, it's easy to spot a physical disability (by no means am I saying it's easier to live) but when you tell someone that you have Epilepsy they're nervous around you at first but if they don't see a seizure and they see what looks like a healthy individual, it's hard to tell someone that when you're having a problem you won't be at work, or you can make it to an event... the list goes on.
It's like every year gets harder. We have no money and it's straining our household. I'm trying to apply for disability next week; my phone interview is an hour before I am to be admitted to the hospital which is kind of odd. I'm just very nervous and alone; I get advice but it's all very generic at this point.
My hands are tied and I feel like the sparrow who's flapping his wings but unable to fly away to safety.
Thursday, May 31, 2012
The Art of Celebration
It seems that in our household we celebrate small victories and huge losses. I was tapped out of the running for a job that I was very much interested in; so, as a tradition (I guess) we watched a couple of great movies and drank some wine.
Our goal is to move back to Milwaukee to be closer to family, but it may take longer than we expect given today's news. I'm not upset, I'm actually in a penitent stage where I can look back and as a result get a glimpse of my future.
---
I've been visiting the south side of Chicago a couple days a week and I've never noticed life in such a way as this. Imagine driving on a four lane road and witnessing an argument between a pregnant woman and her boyfriend and then a mile down the road seeing a woman covering her head with a cloth while grieving a loved one in a cemetery. All of this is happening while 1,000 semi trucks race for position on the road on the way to the highway. Up above, commercial jets aim to land at Midway Airport, roaring their engines louder than the fleet of semi's below.
As I'm witnessing these things, I also realize that this is what I've taken for granted during the entirety my recent life....... LIFE!
Our goal is to move back to Milwaukee to be closer to family, but it may take longer than we expect given today's news. I'm not upset, I'm actually in a penitent stage where I can look back and as a result get a glimpse of my future.
---
I've been visiting the south side of Chicago a couple days a week and I've never noticed life in such a way as this. Imagine driving on a four lane road and witnessing an argument between a pregnant woman and her boyfriend and then a mile down the road seeing a woman covering her head with a cloth while grieving a loved one in a cemetery. All of this is happening while 1,000 semi trucks race for position on the road on the way to the highway. Up above, commercial jets aim to land at Midway Airport, roaring their engines louder than the fleet of semi's below.
As I'm witnessing these things, I also realize that this is what I've taken for granted during the entirety my recent life....... LIFE!
Tuesday, May 22, 2012
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