http://talkaboutit.org/jj-abrams
1 in 26 people has Epilepsy. Did you know that? 1 in 26. That means someone you walked by today at work, in the store, drove by on the street... Someone your kid played with at school. 1 in 26.
We need to talk about it.
Someone my husband knows was recently affected by epilepsy. Someone in their family was taken to the hospital because they had a seizure and they've had a few more since. And this person has asked Randy for advice, and asked him a few questions, and I am SO glad that Randy has been able to help him and answer some of the questions. I remember when we were first going through everything and it was so scary. I was lucky- a friend from high school reached out to me, he has had epilepsy for a long time and he answered a lot of my questions and gave me hope. And it helped me. He also sent me a list of celebrities that have epilepsy and that helped. Seeing successful people that have it calmed me down SO much.
1 in 26.
I went to Disneyland over the weekend. I wonder how many people I walked by were also dealing with the fear I was dealing with-
-"Will this ride cause a seizure?"
-"This crowd is freaking me out, I hope I don't have a seizure."
-"Should I watch these fireworks?"
-"I'm getting tired, maybe I should go back and rest so I don't have a seizure."
I don't know my triggers- not really. So I never really know what might set me off. Luckily, I managed to make it through our trip without having any seizures. I don't know how because I was exhausted and overwhelmed but maybe the universe decided to throw me a bone because my surgery is coming up and I needed to have a fun weekend.
Since being diagnosed with epilepsy, I have been mostly open about it. At first, because of my dumb doctors advice, I didn't tell people, but then I realized in order for people to help me if I seize I need to tell them. (I also realized that doctor was an idiot.) Once I started telling people, whether it was just as simple as telling the receptionist at the pediatrician "Can we make the appointment a different time? I can't drive the kids anymore, I've been diagnosed with epilepsy so I need to make it for a time when someone else can drive us." and then finding out that her brother has it too, or finding out that someone's son has it when I apologize for being late because I had to wait for a ride (those were just generic examples, not true stories) or -and this one is true- having to call the dentist back and apologize and then ask for a repeat of our discussion, then explain that you have epilepsy and say "I had a seizure towards the end of our conversation and I'm not sure what was said. I know that I called you and explained what the appointment request was for, and I see that I started writing but then I have no idea what happened." She was sweet, checked on me, made sure I was OK, said that her friend is epileptic, and then we replayed the conversation and she sent me an email verification of everything.
1 in 26.
A friend recently told me that his coworker's brother was recently put on meds for his epilepsy. He isn't old enough to get surgery. They want to wait until his brain is done forming. (Brains don't reach full maturity until age 25.) He will be on meds until he reaches the proper surgery age and then he will most likely get the same surgery I am getting.
1 in 26.
It is so weird how often I hear these stories now. "My fill-in-the-blank has epilepsy" or sometimes it's just that they had one seizure. It's still a relatable thing. Or "My brother had surgery for that" or something along those lines.
1 in 26.
I go in 8 days for my surgery. Terrified is no longer enough to describe how I feel. I don't know a word that is five levels beyond that with anxious and nauseated mixed in though. Whatever word that is, that's how I feel. I'm trying to keep my focus on something else though, and I just want to help spread the word, it needs to be talked about.
Epilepsy awareness.
1 in 26.
65 million people.
Talk about it.
Tuesday, March 20, 2018
Thursday, March 15, 2018
Pre-ops
No quote today. Just what it was.
I had my pre-ops last week. And it was a long day... And I think I have finally absorbed the fact that I had my pre-ops. And that means we are almost there.
The day started with an MRI- with contrast. As I've mentioned before, I'm not a huge fan of MRI's, I have claustrophobia, so they aren't fun for me. And the way they have the set up at Stanford is with this head cage thing and then they put these cushions around you and you can't move AT ALL. You do have this little mirror set up so you can see outside of the MRI tube, so it's supposed to be sort of reassuring... And it is better than most, I suppose. If any other MRI had me locked up, in a head cage, and there weren't a tiny mirror, I would have thrown up, cried, and it would have been over. However, there was a mirror, and I had anti-anxiety drugs, so I was set.
In my previous experience with contrast MRIs, I was just given the contrast before I went into the tube. With this one, I was given an IV on my left arm and hooked up to a "power IV". I had no idea what that meant, but my anti-anxiety pills were already kicking in, they put a warm blanket on me, I was getting sleepy and I didn't really care. About 30 minutes into the MRI, I was told it was time for the contrast and through the mirror I could see the gears on the "power IV" turning and then my left arm got very cold and the medicinal smell of contrast hit the room and there you go! That's what the "power IV" meant.... I guess. It meant that no one needed to be in the room and that they could magically shoot me up with the contrast during the MRI. And, just like last time, right about the time the anti-anxiety meds were wearing off and I was starting to cry and totally lose my shit, the MRI was over.
The tech said he could tell it was getting to me- he saw my legs and feet tense up. I was just about to squeeze the emergency "get me out of here" button when he said "Last one, Katie. It's four and a half minutes. You ok?" And I sucked it up and I said "Yep." and I just kept thinking to myself "It's OK... This is the last one until the surgery. Last one until the surgery. You've got this." and it felt more like twenty minutes than four and a half, but I'll take his word for it.
My next appointment, which was about twenty minutes after the MRI, was with the neurosurgeon. First, I met with his assistant. She checked my heart, and my blood pressure which was perfect (this is important), and then she did some neurological exams. She also checked my vision. Risks associated with this surgery are double vision and loss of peripheral vision, so she was checking that out. After she left, the surgeon came in. And he answered all of our questions and put our minds at ease and he was amazing and confident and comforting and he just has such a way about him that I was ready to get the surgery right then. Of course, now I'm back to being freaked out, so too bad it didn't happen right then.
Then I had ANOTHER appointment about twenty minutes after that one. And it was to get labs done. Since I had the IV in the left arm, they used my right arm for the labs. Immediately after the labs, I met with the anesthesiologist. Her assistant wanted to do her own checks on my heart and stuff... and she wanted to take my blood pressure. I just looked at her for a minute, then I showed her my arms, wrapped in bright pink "hey look at me I just had needles in my arm" tape and explained that squeezing the hell out of them with the blood pressure cuff didn't seem like a good idea. And I said I just had my blood pressure taken down stairs and it should be recorded in the system, could they just use that? I have high blood pressure, and I have "white coat syndrome" which means it's always higher at the doctors office. So now we are going to add the stressful day, the pain of the lab/IV, the unnecessary retest, etc to it and she was young and she wasn't getting it and she chose to do it anyway... And so my blood pressure was high. (Even though it was perfect down stairs) And she asked if it hurt. I said yes. And she thought to herself but said it to the room "I wonder if I should take it again..." and I said "I wish you wouldn't." So thankfully, she didn't. I mean, good grief.
So then the anesthesiologist came in and told me what to expect the day of . She gave me guidelines about which meds I can take the day of and everything. I can't take my Vitamin D between now and then and no more ibuprofen for the time being, things like that. Things I didn't think of. I'm glad we had that discussion.
And NOW, we wait.
I have had seizures since that day, I'm sure. I don't even remember anymore. But it's only 13 days away.
I'm trying to make the most of the 13 days. We are going to Disneyland this weekend. I'm meeting up with out of town (and out of state!) family and we are having a fun filled weekend with the kids. And then I'm trying to just have fun with my friends and family throughout the week leading up to the surgery. I'm trying to get all of the snuggles with the kids I can before I go up to Stanford since they will be with their dad that week and just trying to make the most of it.
I go back and forth from terrified to hopeful. I know these doctors are the best. I know this is the best thing I could be doing. But it's my brain. And it's scary. It was scary when it was a few months away, but now it's just two weeks away.
And here we are.
It's a huge struggle. I don't know where to go from here. Part of me is excited, I can't wait for the surgery and for this miracle it's supposed to offer. I miss my life. I miss going to the store when I need to go to the store and not having to rely on someone else being available to take me.
I miss being able to take a shower whenever I want and not needing someone else to be home in case something happens. I miss taking a long bubble bath just because I feel like it. And I miss being on stage. I'm keeping my fingers and toes crossed that they fix these seizures and my memory somehow comes out OK at the end of this so I can start doing plays again. I miss it so much.
And then there's the part of me that's terrified that it won't work and I'll still be in this struggle.
13 days left to fight with myself and hope the optimistic side of me wins- it usually does.
0 days seizure free... 13 days until the surgery... And then we will "kick those seizures out the door!" as my son said this afternoon.
I had my pre-ops last week. And it was a long day... And I think I have finally absorbed the fact that I had my pre-ops. And that means we are almost there.
The day started with an MRI- with contrast. As I've mentioned before, I'm not a huge fan of MRI's, I have claustrophobia, so they aren't fun for me. And the way they have the set up at Stanford is with this head cage thing and then they put these cushions around you and you can't move AT ALL. You do have this little mirror set up so you can see outside of the MRI tube, so it's supposed to be sort of reassuring... And it is better than most, I suppose. If any other MRI had me locked up, in a head cage, and there weren't a tiny mirror, I would have thrown up, cried, and it would have been over. However, there was a mirror, and I had anti-anxiety drugs, so I was set.
In my previous experience with contrast MRIs, I was just given the contrast before I went into the tube. With this one, I was given an IV on my left arm and hooked up to a "power IV". I had no idea what that meant, but my anti-anxiety pills were already kicking in, they put a warm blanket on me, I was getting sleepy and I didn't really care. About 30 minutes into the MRI, I was told it was time for the contrast and through the mirror I could see the gears on the "power IV" turning and then my left arm got very cold and the medicinal smell of contrast hit the room and there you go! That's what the "power IV" meant.... I guess. It meant that no one needed to be in the room and that they could magically shoot me up with the contrast during the MRI. And, just like last time, right about the time the anti-anxiety meds were wearing off and I was starting to cry and totally lose my shit, the MRI was over.
The tech said he could tell it was getting to me- he saw my legs and feet tense up. I was just about to squeeze the emergency "get me out of here" button when he said "Last one, Katie. It's four and a half minutes. You ok?" And I sucked it up and I said "Yep." and I just kept thinking to myself "It's OK... This is the last one until the surgery. Last one until the surgery. You've got this." and it felt more like twenty minutes than four and a half, but I'll take his word for it.
My next appointment, which was about twenty minutes after the MRI, was with the neurosurgeon. First, I met with his assistant. She checked my heart, and my blood pressure which was perfect (this is important), and then she did some neurological exams. She also checked my vision. Risks associated with this surgery are double vision and loss of peripheral vision, so she was checking that out. After she left, the surgeon came in. And he answered all of our questions and put our minds at ease and he was amazing and confident and comforting and he just has such a way about him that I was ready to get the surgery right then. Of course, now I'm back to being freaked out, so too bad it didn't happen right then.
Then I had ANOTHER appointment about twenty minutes after that one. And it was to get labs done. Since I had the IV in the left arm, they used my right arm for the labs. Immediately after the labs, I met with the anesthesiologist. Her assistant wanted to do her own checks on my heart and stuff... and she wanted to take my blood pressure. I just looked at her for a minute, then I showed her my arms, wrapped in bright pink "hey look at me I just had needles in my arm" tape and explained that squeezing the hell out of them with the blood pressure cuff didn't seem like a good idea. And I said I just had my blood pressure taken down stairs and it should be recorded in the system, could they just use that? I have high blood pressure, and I have "white coat syndrome" which means it's always higher at the doctors office. So now we are going to add the stressful day, the pain of the lab/IV, the unnecessary retest, etc to it and she was young and she wasn't getting it and she chose to do it anyway... And so my blood pressure was high. (Even though it was perfect down stairs) And she asked if it hurt. I said yes. And she thought to herself but said it to the room "I wonder if I should take it again..." and I said "I wish you wouldn't." So thankfully, she didn't. I mean, good grief.
And NOW, we wait.
I have had seizures since that day, I'm sure. I don't even remember anymore. But it's only 13 days away.
I'm trying to make the most of the 13 days. We are going to Disneyland this weekend. I'm meeting up with out of town (and out of state!) family and we are having a fun filled weekend with the kids. And then I'm trying to just have fun with my friends and family throughout the week leading up to the surgery. I'm trying to get all of the snuggles with the kids I can before I go up to Stanford since they will be with their dad that week and just trying to make the most of it.
I go back and forth from terrified to hopeful. I know these doctors are the best. I know this is the best thing I could be doing. But it's my brain. And it's scary. It was scary when it was a few months away, but now it's just two weeks away.
And here we are.
It's a huge struggle. I don't know where to go from here. Part of me is excited, I can't wait for the surgery and for this miracle it's supposed to offer. I miss my life. I miss going to the store when I need to go to the store and not having to rely on someone else being available to take me.
I miss being able to take a shower whenever I want and not needing someone else to be home in case something happens. I miss taking a long bubble bath just because I feel like it. And I miss being on stage. I'm keeping my fingers and toes crossed that they fix these seizures and my memory somehow comes out OK at the end of this so I can start doing plays again. I miss it so much.
And then there's the part of me that's terrified that it won't work and I'll still be in this struggle.
13 days left to fight with myself and hope the optimistic side of me wins- it usually does.
0 days seizure free... 13 days until the surgery... And then we will "kick those seizures out the door!" as my son said this afternoon.
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