I had my surgery.
The days leading up to it, I lost the fear. I was no longer terrified. I had a party, an "epilepsy sucks" party... I invited my friends and family and we celebrated the fact that I was getting surgery and that I was "kicking those seizures in the butt!" as my son said. And it was overwhelming to see how many people came to support me. It was amazing to feel that much love. And I was no longer scared. I was hopeful. And I was ready.
I went to the hospital early that morning. I think we checked in at like 5:15 AM or something ridiculous like that- it could have been earlier than that. All I know is we woke up at 4 something, and were at the hospital really early. I was taken away from everyone to get weighed and changed into my gown and then after I was settled into the bed and answered the standard hospital questions "Name, birthday, allergies" all of that, the nurse, Julie, told me I could have visitors come back two at a time. She said "You have four people in the waiting area, don't you? Your husband, your sister, and your parents." And I just sat there, stunned. This was NOT the lady that called me back, and she was nowhere near me when I was in the waiting area. She laughed and said "I just walked by them and saw someone with your face and thought 'That has to be my patients sister', is she your twin?"
My poor sister.... We haven't gotten that in a long time. She is 4 1/2 years younger than I am, and I looked like complete hell that morning.
We discussed why I was having the surgery and how I can't wait to get my life back to normal. I can't wait to take baths and drive my kids to their practices and run errands on my own. And do just normal, simple things. I can't wait to just read a book and remember what I read. Just live life and I told her I felt so good about the surgery and my family was sitting out there, so nervous and scared and I wasn't scared anymore and I think that made them more scared. So she said "Which two do you want to see first?" And I laughed and told her that's a terrible decision to have to make, she agreed and told me SHE decided she is sending my parents back first.
My parents came in and we talked for a while and then they sent Randy and Samantha back. While they were back, the anesthesiologist came back- that guy was delightful. And he put me in an even better mood.
As it got closer to my surgery time, they said everyone could come back and visit. So my parents, Randy, Samantha, and my aunts who drove up for the surgery came back- that's right, at this point, I had a fan club- and my brother in law was due to get up there after the surgery. We made jokes about my lovely collection of hospital bracelets. I had the usual bracelet with my name and everything, the allergy alert bracelet, the latex allergy alert, and then because of my epilepsy she gave me a "Fall risk" bracelet (which I really just need in my every day life, epilepsy or not).
My delightful anesthesiologist came back, this time with a second anesthesiologist and they said it was time to go. Everyone said their goodbyes, but they let my mom and Randy stick around and said they could come with me while I was being taken away. I remember the delightful one saying "She's not even going to remember you guys ever said goodbye" and kind of laughing about it, my arm got cold... and there you go.
Then I was being wheeled into the recovery room and my doctor was saying "Katie... Katie are you with us now? We had to stop the surgery. Your brain hemorrhaged and we had to stop. Are you with us?" And I just stared at him. He asked again, "Katie?" I said "I don't understand. You stopped?"
He explained it again. And I started shivering for some reason. They asked if I was cold. I said I guessed I was, I didn't really know. So they gave me a warm blanket and oxygen and I fell asleep again.
When I woke up I was in the recovery area. I got the attention of a nurse. I asked her if she could help me. She came over and asked what I needed. I said, "They said my brain hemorrhaged. I don't understand. They didn't finish the surgery... So what does that mean? My brain. What happened?" And she said "Yes, that's right. That had to abort the procedure." And I said again "But what does that mean?" And just started crying.
My doctors came in pretty soon after that and tried to talk to me again. I didn't really wrap my head around what happened. I think I asked him about 4 times if he "fixed me" and he kept telling me that the procedure didn't get finished. Once he saw I was awake enough, I was taken to my room. And I got to see my family, and I bawled my face off.
Hearing their side of it was awful. They were watching a board that showed the progress of my surgery, they would know when I was out and wouldn't have to wait for someone to tell them... And when they saw I was out, they thought it was fast, but they were ready for the doctor to come and tell them how it went. The never expected it to be bad news. The doctor didn't expect it to be bad news. This threw everyone off. They sat there for 2 hours waiting to hear if I was OK... they had no idea if I was stable or if I would be OK or what was going on. So I kept everyone on their toes. I can't imagine being told that someone I loved just had a hemorrhage and then like "But we won't know more until they wake up, so sit tight" and then just.. sitting there.
Once they knew I was awake and stable, the doctor came out and told them I was fine and I was going to be wheeled down the hall right by them and they could say hello but that I didn't know the outcome of the surgery yet and I've been told their hearts all just broke for me because they all knew how much I wanted "to be fixed". I just want my life back. I have absolutely no recollection of talking to them or seeing them. This all happened right before I went into the recovery area- right before the doctor told me about the surgery results.
To add salt to the wound, it turns out they were 3-4 minutes away from finishing the surgery when the hemorrhage started. We were SO close.
Tomorrow marks 2 weeks since the surgery. The staples have been removed. I am still in a lot of pain. I am completely exhausted. It still hurts to bend over because of the pressure in my head due to the hemorrhage. I am just... I feel useless. Worse than before when I was dealing with just the epilepsy. So far, I have had two seizures and two auras that haven't turned into anything but they have been awful all the same. I was given a lecture by my neurosurgeon about taking the painkillers he prescribed because it said "take 1-2" so I'd take 1 even if it hurt a lot and he said "Take 2, you just had brain surgery and a hemorrhage. It's OK if you need 2, take 2. That's fine, you should need painkillers. You need to take painkillers and you need to get sleep and if the pain is keeping you awake, then it's a problem." so it's also possible that the pain was causing the seizures before because that's just the way life works.
I was completely defeated. I cried I think every day for the first 4-5 days after the surgery. I cried because I was happy to see my kids, I cried because I hurt, I cried because I was telling someone my story, I cried because someone asked how the surgery went, I cried just because. It was awful. I was looking forward to coming out of this surgery stronger and better than before and I came out of it more broken. But at the same time, I realize there was a moment where I could have died and I am so incredibly grateful to be here to share my story and to see my kids and for everything else. My doctor saw the problem, acknowledged the problem, and stopped the surgery. Someone else might have been more in the "But we are almost done, let's just finish it really quick" mindset and who knows what may have happened. Sure, we like to think that doctors wouldn't do that, but WHO KNOWS?
I am here now. I am alive. And I am defeated but I am still grateful.
I went back to the doctor on Thursday. (That's when he removed the staples and lectured me about the painkillers.) We discussed what happened and the next step. The theory is I just had a weak blood vessel and it was small, that's why it didn't show up on any pre-op MRI or scans. And when they went in for the surgery, even though the surgery is minimally invasive, it caused the weak vessel to burst and bleed.
We are choosing to look at this as a weird sort of blessing. Because this vessel was sitting up there, hiding, and wasn't showing itself on any of the imaging I was having done there were so many other times it could have chosen to throw its little surprise party. I am SO glad it happened when I was in the presence of doctors, under an MRI machine so they could see exactly what was happening. Seizures can cause hemorrhages, so what if it chose to do that when I was sitting at home playing with the kids and had a seizure and I just didn't snap out of the seizure? What if, because I am an accident prone spaz, I knocked my head on something and that caused it to hemorrhage? I keep thinking of all of the "what if" situations, which I know you aren't supposed to do, but how do you NOT do that when you are told that you could have died? It's pretty hard not to do that.
I'm still trying to wrap my head around everything.
After talking to the doctor and hearing the theories about why it happened, and that it's normal to be in this much pain and to be this exhausted and to feel the way that I feel, we have decided to try it again. I was scared the first few days after my surgery, but I can't keep living with seizures. I just can't. And he seems confident that this was a fluke and while nothing is ever 100%, he seems confident enough. I wish we could just go for it right now while I'm still healing and in pain and it's not like "YAY I FEEL BETTER!" and then I go back in but unfortunately, we have to wait for the hemorrhage to totally heal and dissipate. So far, everything looks good and my vitals are good. He told me "We have a surgery date in August" and he saw how sad I was because August is so far away and said "There is a date in June and it's 50/50 that one is going to get cancelled. If it does, that one is yours." Then he grabbed my hand and told me that I am brave and strong and to hang on because we are going to get though this and we are going to fix it. Two hours after leaving his office, I got a phone call, I have surgery scheduled for June 27.
I still feel defeated. But, and maybe this is just because I'm the kind of person who always sees the light no matter the situation, I still have a little bit of hope. I'm a huge believer in things happening for a reason, and I'm choosing to believe that this all happened because that vessel could have done some serious damage- or killed me- in some other setting. So if I have to live with seizures for a few more months, I guess I'll just deal with it... because at least I am living, right?
The countdown is back on. 77 days until my next attempt at surgery. 1 day since my last seizure.
What a journey it's been so far....
Tuesday, April 10, 2018
Tuesday, March 20, 2018
1 in 26 of Us
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.
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.
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.
Wednesday, February 7, 2018
“The advantage of a bad memory is that one enjoys several times the same good things for the first time.” ― Friedrich Nietzsche
Oh my memory.... It's so bad. It's funny how terrible my short term memory is getting BUT that will be fixed with the surgery (hopefully). If the seizures stop, the memory should improve. There is a slight chance that my memory won't get fixed, and it will in fact be worse in regards to "spacial memory". When I asked what that meant, they said "You might forget where you put something or you might forget how to get somewhere" which is stuff I'm doing already because of the epilepsy- or as my hilarious friend and coworker put it "That's called adulting". SO, we will see what the future holds. FINGERS CROSSED!
As excited as I am for this procedure and as amazing as it sounds.... THEY ARE PUTTING A LASER IN MY BRAIN.
As we get closer and closer to the date of the surgery- actually, as we get closer to the pre-op appointment, I am starting to get anxious. It's so weird to think about. Especially when they say things like "Well, you'll just be in the hospital overnight."
Oh really? That's all? Overnight? You are putting a laser IN MY BRAIN and I'm just going to sleep it off and you are sending me on my way? OK! Great.... So... That's.... WHAT?!
This spring brings a lot of changes for me. Usually I coach my daughters softball team. I have been doing that since she was old enough to play. This year, obviously I can't. Last year was tough for me. That was when the seizures really started to come on fast and strong and I missed the last few games. This year, I'll have to sit it out and watch from the bleachers and try my best not to "coach" from the side. My daughter is having a hard time understanding why I'm not coaching this year. The kids have a hard time understanding, as great as they handle it when they see me have a seizure, they still don't comprehend that I'm not 100% Me anymore. Why can't I drive them somewhere, why can't I coach, why can't I chaperone the field trip, etc.... Softball is going to be hard.
I also have to step back from my position at work to allow time for mental preparation before the surgery... and obviously for rest and healing afterward. Plus, my seizures are way more frequent and out of control right now and it's been too hard to focus on work. So stepping back just makes sense. I know March 28th will be here before I know it, but I feel like Spring without coaching or working will be such a weird thing for me, normally I'm running around like a crazy person going straight from work to the softball fields. And now I'm just going to be resting.... and I don't know if you can tell from previous posts but I kind of suck at resting. I need to really learn how to focus on me, which is something I've never been able to do. Ever.
As I've said countless times in my other blogs and my Facebook posts, my bosses are amazing people and they were so understanding and supportive. And my coworkers are like family and they are such great people. I've never felt so at home at a work place. They were all incredible when I told them about my epilepsy and they were champs when they witnessed me have a seizure- I was embarrassed, but they were wonderful. So stepping away is hard, but when you are trying to work and your brain feels like an invisible fist is trying to punch it's way through your skull and then your chest tries to explode.... It makes it really difficult to stay on task. So then you sleep all day. And then probably the next day. And when you get to the point that you are only clocking in like 12 hours for 2 weeks, you know your body just isn't up to the task. And that's not fair to anyone.
I am having a hard time finding people to talk to out there in my support groups who have had this sort of surgery. I am hoping that I will be able to post about my experience and that I can be that person for someone later on down the line when they are looking for someone.
I am starting to get to the "What's going to happen to my hair?" weird stage of panic... I know they're going to have to shave part of it. But a big part? I already have part of it shaved, so should I shave it again or MORE of it to save them the hassle? Should I get a pixie? Should I order some cute bandanas and scarves so I can cover up the stitches and staples when I go out? If I keep my hair long will I accidentally brush the staples? WEIRD QUESTIONS are popping into my head because of my anxiety and they come on just as randomly and rapidly as they just did in this blog. And I want to be able to post about the answers to these questions so that later on, if someone like me, is searching for these answers, they can maybe stumble onto my blog and see that I panicked over these random questions too and that I found the answers. I'm going to ask at my pre-op on March 8th and hopefully the doctor will be able to answer the questions for me. I am a little worried that he will have a doctor's optimism though- "Minimally invasive" to me the first time we spoke, meant I would have those stitches that just dissolve and disappear on their own.... but then I spoke with his assistant last week and she made me call my doctor down here to make sure he was comfortable removing the STAPLES from my head to save me the drive all of the way up there for just a 5 minutes appointment. So... you know- Doctors optimism vs patient reality. If I ask about the scar size and he tells me it's going to be very minimal and hardly noticeable, etc. is that the truth? Or will I be super self conscious about it? I can't find anything about it online, so I will have to wait and see what is said. For now, I have a lot of cute scarves in my Amazon cart.
I have 49 days until my surgery. I am 2 days seizure free. And 100% terrified.
As excited as I am for this procedure and as amazing as it sounds.... THEY ARE PUTTING A LASER IN MY BRAIN.
As we get closer and closer to the date of the surgery- actually, as we get closer to the pre-op appointment, I am starting to get anxious. It's so weird to think about. Especially when they say things like "Well, you'll just be in the hospital overnight."
Oh really? That's all? Overnight? You are putting a laser IN MY BRAIN and I'm just going to sleep it off and you are sending me on my way? OK! Great.... So... That's.... WHAT?!
This spring brings a lot of changes for me. Usually I coach my daughters softball team. I have been doing that since she was old enough to play. This year, obviously I can't. Last year was tough for me. That was when the seizures really started to come on fast and strong and I missed the last few games. This year, I'll have to sit it out and watch from the bleachers and try my best not to "coach" from the side. My daughter is having a hard time understanding why I'm not coaching this year. The kids have a hard time understanding, as great as they handle it when they see me have a seizure, they still don't comprehend that I'm not 100% Me anymore. Why can't I drive them somewhere, why can't I coach, why can't I chaperone the field trip, etc.... Softball is going to be hard.
I also have to step back from my position at work to allow time for mental preparation before the surgery... and obviously for rest and healing afterward. Plus, my seizures are way more frequent and out of control right now and it's been too hard to focus on work. So stepping back just makes sense. I know March 28th will be here before I know it, but I feel like Spring without coaching or working will be such a weird thing for me, normally I'm running around like a crazy person going straight from work to the softball fields. And now I'm just going to be resting.... and I don't know if you can tell from previous posts but I kind of suck at resting. I need to really learn how to focus on me, which is something I've never been able to do. Ever.
As I've said countless times in my other blogs and my Facebook posts, my bosses are amazing people and they were so understanding and supportive. And my coworkers are like family and they are such great people. I've never felt so at home at a work place. They were all incredible when I told them about my epilepsy and they were champs when they witnessed me have a seizure- I was embarrassed, but they were wonderful. So stepping away is hard, but when you are trying to work and your brain feels like an invisible fist is trying to punch it's way through your skull and then your chest tries to explode.... It makes it really difficult to stay on task. So then you sleep all day. And then probably the next day. And when you get to the point that you are only clocking in like 12 hours for 2 weeks, you know your body just isn't up to the task. And that's not fair to anyone.
I am having a hard time finding people to talk to out there in my support groups who have had this sort of surgery. I am hoping that I will be able to post about my experience and that I can be that person for someone later on down the line when they are looking for someone.
I am starting to get to the "What's going to happen to my hair?" weird stage of panic... I know they're going to have to shave part of it. But a big part? I already have part of it shaved, so should I shave it again or MORE of it to save them the hassle? Should I get a pixie? Should I order some cute bandanas and scarves so I can cover up the stitches and staples when I go out? If I keep my hair long will I accidentally brush the staples? WEIRD QUESTIONS are popping into my head because of my anxiety and they come on just as randomly and rapidly as they just did in this blog. And I want to be able to post about the answers to these questions so that later on, if someone like me, is searching for these answers, they can maybe stumble onto my blog and see that I panicked over these random questions too and that I found the answers. I'm going to ask at my pre-op on March 8th and hopefully the doctor will be able to answer the questions for me. I am a little worried that he will have a doctor's optimism though- "Minimally invasive" to me the first time we spoke, meant I would have those stitches that just dissolve and disappear on their own.... but then I spoke with his assistant last week and she made me call my doctor down here to make sure he was comfortable removing the STAPLES from my head to save me the drive all of the way up there for just a 5 minutes appointment. So... you know- Doctors optimism vs patient reality. If I ask about the scar size and he tells me it's going to be very minimal and hardly noticeable, etc. is that the truth? Or will I be super self conscious about it? I can't find anything about it online, so I will have to wait and see what is said. For now, I have a lot of cute scarves in my Amazon cart.
I have 49 days until my surgery. I am 2 days seizure free. And 100% terrified.
Wednesday, January 3, 2018
“One thing you can't hide - is when you're crippled inside.” ― John Lennon
Well....
It's been a while. In December, I made a video, thinking I would take that approach... but it was near 20 minutes. And I ended up getting really emotional. So I chickened out and I didn't post it. And I've been sitting here, keeping my thoughts to myself. But now I'm finally posting and it's going to probably be a long one...
November was Epilepsy Awareness Month. I had great intentions of posting things every day to help raise awareness. And I did post. Not every day. But I did manage to, I think, send out informative posts. I had several people actually approach me and say things about whatever I posted that day, which made me feel like I was doing something. I was spreading awareness. And I am still trying to spread awareness. Just because Epilepsy Awareness Month is over doesn't mean I am done.
There are so many people out there that have taken time to ask me questions about my seizures and about epilepsy and what to do... and that means so much to me. Thank you.
A lot of people think it's something you're born with, it's something that is hereditary... but it's not. And it's not always brought on by something you're doing, either. I was in my 30s when I had my first seizure. I wasn't out partying, I wasn't doing anything crazy, I was sitting on the floor, petting a dog... but that's not what I wanted to talk about.
I have been to the doctor so many times since my last post- it's crazy. And I have had a lot of information thrown at me.
I went for a visit to my endocrinologist. I've been seeing this guy since I was 15 and I found a lump on my thyroid. I have to see him every year to make sure things are normal. A few years ago, the biopsies started coming back "suspicious" but were never cancerous and it was just getting way too scary for comfort and I have two kids and there were like eight lumps, and it was out of control, so I made the decision to have my thyroid removed. It was the only way to get all of the lumps removed. So I go to see my doctor to make sure my artificial thyroid hormone levels are where they need to be and that everything else is functioning as it should be and that the parathyroid is doing OK and all of that business. The last few visits, my thyroid level has been low. Which could be playing a part in the weight gain, hair loss, feeling miserable situation I have going on.... but those are also side effects of my seizure drugs, so it's hard to tell.
They upped my thyroid last time... it didn't work. So they are upping it again.
The problem is, there is a chance that one of my seizure medications is preventing my thyroid medication from working properly.
ROCK|Katie'sBody|HARDPLACE
I need both of these medications. I have hit the max dose of the seizure medication, so hopefully, upping the thyroid will help and they won't be battling it out anymore, but we shall see.
After I saw my endocrinologist, I had a pretty huge appointment up at Stanford. I met with my neurologist as well as the head of the neurosurgery and we discussed my options.
My epilepsy is not responding to medications... Right now, I am on a pretty high dose of a medication that I can't pronounce or spell. And if I go on a higher dose, then my lips swell and my tongue goes numb. I am on a second medication- one I was on in my teens for my migraines, called Topamax. I am on the max dose for that. However, I am still having "breakthrough seizures". And it's the complex partial seizures- thank God. But I will go a week... 10 days.. I will be doing GREAT. And I will be thinking "YES! I'm finally doing it!" and then I'll have a seizure. And I get them in clusters, which means I have them every other day. Or sometimes, I have 3 in one day. And all I can do is sit in bed.
Different things will lower my threshold and cause clustering, we still haven't found a trigger. I had an ear infection, that lowered my threshold and I had what is classified as a grandmal seizure. If I had been standing up, I would have been seriously injured. If I had been anywhere but where I was, I would have been seriously injured. Luckily, I was in bed because I had an ear infection, so I was already surrounded by pillows and soft things. Severe PMS, lack of sleep, not eating enough, crowds, too much caffeine, not enough caffeine, WHO KNOWS- so many things and also nothing at all seems to lower my threshold. It seems like my biggest seizure free stretch lately is about 3-4 days. It's been rough.
So my doctors called me in. And knowing all of this with the clusters and the medicines and the thyroid and the everything... I am a candidate for surgery. Which we had discussed before but now it's real. Now I'm talking to the head of neurosurgery. We rule out, almost immediately, implant options because neither of those are going to work for me. (If you want info on the RNS or VNS: https://www.medscape.com/viewarticle/818699_2 that has some info)
And we start talking about the different surgery options. My choices are a temporal lobectomy (https://www.webmd.com/epilepsy/guide/temporal-lobe-resection-epilepsy#1) which is the "traditional" way and a laser ablation ( https://www.youtube.com/watch?v=MMENvNN_Nt8&feature=youtu.be ) which is newer and terrifies me a little bit more even though it's less invasive and doesn't involve removing a chunk of my skull.
So I talk it over with them. My parents and Randy are also in the room and we are all asking our questions... it's just such a weird decision- "Which way do you want us to cut into your brain? If we do it this way and it doesn't work like we want it to, then we can still do the other one, but it we do it the other way and it doesn't work, then we can't do anything else..." Yes. That's basically what they said.
The laser is safer. The laser has less bad things that can happen. The laser also has less data because it's newer... so MAYBE it won't work. And if it doesn't work, they will have to go back and do the other one anyway. But if they do the other one right off the bat, and it doesn't work, then oh well, we tried? And that's where my hang up was. I just kept going back to that.
And the head of neurosurgery looked right at me and very confidently said to me "If it were my family member, I would do the laser ablation. No question." So... laser ablation, it is. I think that's what I needed. I needed someone to tell me something like that. I needed facts and confidence. Before, I was just getting a lot of overwhelming information.
He told me he would send his surgery scheduler down and we should be able to get something on the books for Februaryish.... She came down and said because we have to use the MRI suite for that surgery, there weren't any openings until May. (MAY?!) And she would call me once she heard for sure from the MRI people.
The next day, she called me. She had a date for me. May 23rd.... I said thank you and I hung up. And I cried. A lot. For some reason, May 5th would have been OK, but May 23rd was the END OF MAY and just so far away. When you're told February, and you get May, and then you get the end of May... All I want is some kind of normal back. I can't wait to wake up without the inside of cheek chewed up because I had a seizure in my sleep. I can't wait to shower with the door locked. I can't wait for everyone to feel OK leaving me alone with my kids.
And after I cried and moped and was miserable for almost a week all the while trying to be grateful that I was going to be fixed, but hoping it was going to be sooner... She called again. There was an cancellation and an opening and I got moved up the line. March 28th. And I cried all over again. For a whole different reason.
My head hurts today. A lot. It does that. The right side, where the "electrical storms" happen. And I keep telling myself "84 more days... I can do this." And then maybe, FINALLY, I can say I am seizure free and the count will grow and keep growing and I won't go back to zero anymore. And that will be so amazing.
It's been a while. In December, I made a video, thinking I would take that approach... but it was near 20 minutes. And I ended up getting really emotional. So I chickened out and I didn't post it. And I've been sitting here, keeping my thoughts to myself. But now I'm finally posting and it's going to probably be a long one...
November was Epilepsy Awareness Month. I had great intentions of posting things every day to help raise awareness. And I did post. Not every day. But I did manage to, I think, send out informative posts. I had several people actually approach me and say things about whatever I posted that day, which made me feel like I was doing something. I was spreading awareness. And I am still trying to spread awareness. Just because Epilepsy Awareness Month is over doesn't mean I am done.
There are so many people out there that have taken time to ask me questions about my seizures and about epilepsy and what to do... and that means so much to me. Thank you.
A lot of people think it's something you're born with, it's something that is hereditary... but it's not. And it's not always brought on by something you're doing, either. I was in my 30s when I had my first seizure. I wasn't out partying, I wasn't doing anything crazy, I was sitting on the floor, petting a dog... but that's not what I wanted to talk about.
I have been to the doctor so many times since my last post- it's crazy. And I have had a lot of information thrown at me.
I went for a visit to my endocrinologist. I've been seeing this guy since I was 15 and I found a lump on my thyroid. I have to see him every year to make sure things are normal. A few years ago, the biopsies started coming back "suspicious" but were never cancerous and it was just getting way too scary for comfort and I have two kids and there were like eight lumps, and it was out of control, so I made the decision to have my thyroid removed. It was the only way to get all of the lumps removed. So I go to see my doctor to make sure my artificial thyroid hormone levels are where they need to be and that everything else is functioning as it should be and that the parathyroid is doing OK and all of that business. The last few visits, my thyroid level has been low. Which could be playing a part in the weight gain, hair loss, feeling miserable situation I have going on.... but those are also side effects of my seizure drugs, so it's hard to tell.
They upped my thyroid last time... it didn't work. So they are upping it again.
The problem is, there is a chance that one of my seizure medications is preventing my thyroid medication from working properly.
ROCK|Katie'sBody|HARDPLACE
I need both of these medications. I have hit the max dose of the seizure medication, so hopefully, upping the thyroid will help and they won't be battling it out anymore, but we shall see.
After I saw my endocrinologist, I had a pretty huge appointment up at Stanford. I met with my neurologist as well as the head of the neurosurgery and we discussed my options.
My epilepsy is not responding to medications... Right now, I am on a pretty high dose of a medication that I can't pronounce or spell. And if I go on a higher dose, then my lips swell and my tongue goes numb. I am on a second medication- one I was on in my teens for my migraines, called Topamax. I am on the max dose for that. However, I am still having "breakthrough seizures". And it's the complex partial seizures- thank God. But I will go a week... 10 days.. I will be doing GREAT. And I will be thinking "YES! I'm finally doing it!" and then I'll have a seizure. And I get them in clusters, which means I have them every other day. Or sometimes, I have 3 in one day. And all I can do is sit in bed.
Different things will lower my threshold and cause clustering, we still haven't found a trigger. I had an ear infection, that lowered my threshold and I had what is classified as a grandmal seizure. If I had been standing up, I would have been seriously injured. If I had been anywhere but where I was, I would have been seriously injured. Luckily, I was in bed because I had an ear infection, so I was already surrounded by pillows and soft things. Severe PMS, lack of sleep, not eating enough, crowds, too much caffeine, not enough caffeine, WHO KNOWS- so many things and also nothing at all seems to lower my threshold. It seems like my biggest seizure free stretch lately is about 3-4 days. It's been rough.
So my doctors called me in. And knowing all of this with the clusters and the medicines and the thyroid and the everything... I am a candidate for surgery. Which we had discussed before but now it's real. Now I'm talking to the head of neurosurgery. We rule out, almost immediately, implant options because neither of those are going to work for me. (If you want info on the RNS or VNS: https://www.medscape.com/viewarticle/818699_2 that has some info)
And we start talking about the different surgery options. My choices are a temporal lobectomy (https://www.webmd.com/epilepsy/guide/temporal-lobe-resection-epilepsy#1) which is the "traditional" way and a laser ablation ( https://www.youtube.com/watch?v=MMENvNN_Nt8&feature=youtu.be ) which is newer and terrifies me a little bit more even though it's less invasive and doesn't involve removing a chunk of my skull.
So I talk it over with them. My parents and Randy are also in the room and we are all asking our questions... it's just such a weird decision- "Which way do you want us to cut into your brain? If we do it this way and it doesn't work like we want it to, then we can still do the other one, but it we do it the other way and it doesn't work, then we can't do anything else..." Yes. That's basically what they said.
The laser is safer. The laser has less bad things that can happen. The laser also has less data because it's newer... so MAYBE it won't work. And if it doesn't work, they will have to go back and do the other one anyway. But if they do the other one right off the bat, and it doesn't work, then oh well, we tried? And that's where my hang up was. I just kept going back to that.
And the head of neurosurgery looked right at me and very confidently said to me "If it were my family member, I would do the laser ablation. No question." So... laser ablation, it is. I think that's what I needed. I needed someone to tell me something like that. I needed facts and confidence. Before, I was just getting a lot of overwhelming information.
He told me he would send his surgery scheduler down and we should be able to get something on the books for Februaryish.... She came down and said because we have to use the MRI suite for that surgery, there weren't any openings until May. (MAY?!) And she would call me once she heard for sure from the MRI people.
The next day, she called me. She had a date for me. May 23rd.... I said thank you and I hung up. And I cried. A lot. For some reason, May 5th would have been OK, but May 23rd was the END OF MAY and just so far away. When you're told February, and you get May, and then you get the end of May... All I want is some kind of normal back. I can't wait to wake up without the inside of cheek chewed up because I had a seizure in my sleep. I can't wait to shower with the door locked. I can't wait for everyone to feel OK leaving me alone with my kids.
And after I cried and moped and was miserable for almost a week all the while trying to be grateful that I was going to be fixed, but hoping it was going to be sooner... She called again. There was an cancellation and an opening and I got moved up the line. March 28th. And I cried all over again. For a whole different reason.
My head hurts today. A lot. It does that. The right side, where the "electrical storms" happen. And I keep telling myself "84 more days... I can do this." And then maybe, FINALLY, I can say I am seizure free and the count will grow and keep growing and I won't go back to zero anymore. And that will be so amazing.
Thursday, September 21, 2017
Epilepsy Owes My Brain Rent
I read that a few days ago and it cracked me up... but it's so true. Epilepsy is taking up A LOT of space in there and it's not even sorry.
I'm not even sure where to begin, there is so much to say.
At the end of July, I had testing done at Stanford. Major testing. I had to stay there "anywhere from 3 to 10 days".... which is just what a mother of two wants to hear. They hooked me up to a million wires- or it felt that way anyway- and I was basically hooked up to the wall. There were cameras on me at all times, I couldn't get out of bed without letting the nurses know, they stood outside of the bathroom (in case something happened), and I had a GIANT trail of wires from the wall into the bathroom and a purse of wires I had to carry (see photo) and my head weighed like 500 pounds (an exaggeration, sure, but I don't feel like it's that much of one), and I had to just stay there... I could bring my computer, I had a TV, my mom and Randy kept me company, but there wasn't much to do... it was boring. It was depressing. It was emotional. Thank you snapchat for fun filters.
They took me off of my medicine pretty much immediately to see what sort of activity happens when I'm not on the medicine... and pretty much immediately, I had a seizure. And they tried all sorts of fun tricks to try and make me have seizures- strobe lights, sleep deprivation, hyperventilation, etc. It was super great. (Can you feel the sarcasm through your screen?) It was exhausting and horrible and it made my body hurt.
BUT we learned that my seizures are coming from the right temporal lobe, I occasionally have seizures in my sleep, sometimes I have seizures so small I'm not even aware that I'm having them but they registered on the machine, and loads of other fun stuff. The doctors there decided that a 5 day stay was long enough- and THANK GOODNESS. I had Cabin Fever by Day 2.
My doctors were very excited and said it looked like I was a great candidate for surgery. They explained that there were a few more tests I would have to have done to determine everything and then they would have to present my case in front of a board of epilepsy specialists and neurologists and then once all of that was done, we would know if surgery was the thing to do.
Fast forward to September....
September 14th, I had a PET scan. I had to fast for 5 hours and then they injected a glucose solution into my arm to see what happened and how my brain dealt with that. Fun fact: I am claustrophobic. They let me take an anti-anxiety pill so I was nice and relaxed and sleepy. And right when I was starting to become aware of the fact that I was in a giant tube, the test was over.
September 15th, I had a functional MRI. This is an MRI that requires you to "play along" as one of the techs put it. They have you do things like "Move the fingers on your right hand", and you have to move them a certain way- but without moving the rest of your arm, because if you move too much, you'll "move your brain" as the video said, and that will result in blurry images. Or they might show you a picture of a comb and you have to think the word "comb" and think of what you use a comb for. Or it will show you a police car and say "Think of the sound a police car makes" and you're supposed to think of the word "siren" and you're like me and you think "Weeeeeoooooweeeeoooooweeeoooo.... oh shit! NO! Shit! Siren. They want siren! Oh my god. I'm a spaz. Siren!" And then you have to hold off the giggle attack that's about to happen.
During this MRI, I was not allowed to take the anti-anxiety pill, but I was told that they would keep me distracted so I wouldn't need it, but they needed me alert. And you know what? It ALMOST worked... At the end of the test, Bob the technician said "OK, Katie, now I just need to take images, your part in this is over. Just relax. This first set is going to be about six minutes, then about a minute an a half, then about four minutes, then I have to review everything before I can let you go, ok?" And then I felt my body slide up into the tube a little bit more... And the mirror I had been viewing all of the pictures in that was allowing me to feel like I was not in a tiny tube was no longer viewing the outside of anything and was just looking at my feet, and the tube smashed in around my elbows... and there we go. It's OK though, I only cried a little a bit and then the test was over. lol
The thing with the functional MRI, it lit up the areas of my brain that responded to whatever I was supposed to be doing. And it told the doctors which part of my brain was responsible for language and whatever else they were looking for.
September 18th, I met with my neurologist to go over the July visit, the PET scan, and the functional MRI. She said we know the left side of the brain is responsible for language (which is true for most people but we needed to make sure), that the seizures are definitely coming from the right temporal lobe, there seems to be activity there kind of all of the time even when there isn't a seizure and that there is a little bit of activity happening on the left side as well- but she didn't seem really worried about that but we needed to double check that.
She says she is confident we will be able to get me off of my medication with one of three options, but each one sounds just as crazy and scary as the next.
If there is too much activity coming from the left, then I would need to get a implant- this implant would basically shut down any activity as it's happening. The minute my brain starts firing up, the implant would be like "No way!" and stop it. And this would allow the doctors to monitor it and see what's going on and where it's coming from as well.
If it's all just from the right side, I have two options-
There is the laser option, which just kind of zaps the spots where the seizures are coming from and stops them and there you go. But it's a newer option and there's not a lot of data on the long term effectiveness. It's a short recovery period, but who knows if the seizures will come back in like 5-10 years?
And then there is the big surgery where they go in and they say "This is where the seizures are coming from" and they take that part of my brain out. And that is why they needed to know where my language was coming from. They needed to make sure they wouldn't be damaging anything if they went in there and took something out. And yes, that's scary. It's terrifying. And the recovery period is longer. But people have a high success rate with it. And they go seizure free for the rest of their lives with this surgery. And that sounds awesome.
And I know- "Take out a part of your brain?!" I know! .... But guys... Seizures are more serious than a lot of people realize or understand. Yes, I can get seriously hurt while having one, but it's not just that. There are a lot dangers people don't realize are associated with seizures. And I would rather risk taking out part of my brain.
I was scheduled for a neuropsych exam on October 17th, which was the final test to see which surgery option was going to work the best for me, but it was moved to September 25th. This is a series of brain teasers basically, and I'm told this is going to help them figure out where my memories are stored, how other parts of my brain work and if anything else could be damaged if they do surgery.
My short term memory is already messed up and that's because of where my seizures are coming from. My doctor explained that the right temporal lobe is where short term memory is stored, and that's why I can't remember anything, it's probably when my brain is having activity that I am struggling to remember something.
I also found out that my auras- the precursors to my seizures- count as seizures. So all of the times I thought, "Oh that was just an aura, it didn't turn into a seizure", she said it counts as a seizure... so that's disappointing.
Two days ago, Randy came into the living room where I was watching TV, for some reason he decided to check on me. And apparently I told him I wasn't feeling well. He took me to the bedroom to lay down. And thank goodness he did. I had, what he described as a "pretty bad" seizure. My body hurt, a lot. And I was on the bed... surrounded by pillows and soft things. I can't imagine what would have happened if I had been alone in the living room, in the rocking chair that I am sure I would have fallen out of, next to the table I probably would have smacked my head on. It's been two days and I finally feel normal again. Or as normal as I can, all things considered.
Today I am ending the blog with this note: I started this blog not just so I could try make sense of all of this in my head, but so I could try to bring some Epilepsy Awareness.... even if it's just to like five friends... If you read this and now you are made more aware of different seizure types, I feel like I did something, you know? People don't realize there's more to epilepsy than just falling on the floor and convulsing.
Ask your friend who looks like they're daydreaming if they're OK... maybe they're not daydreaming.
Ask your child who is getting in trouble at school for not paying attention... maybe it's not ADD or whatever the teachers want to label them with...
Your klutzy friend who also has bad migraines? Maybe it's something else and she has crappy doctors.
While blogging, I unfortunately had a complex partial seizure.... so another day, another seizure. The count is at zero, but I can't wait until the day I can say "I can't remember the last time I had a seizure".
I blog to sort it out. I blog to bring awareness. Katie VS Epilepsy. I'm determined to win this battle.
I'm not even sure where to begin, there is so much to say.
At the end of July, I had testing done at Stanford. Major testing. I had to stay there "anywhere from 3 to 10 days".... which is just what a mother of two wants to hear. They hooked me up to a million wires- or it felt that way anyway- and I was basically hooked up to the wall. There were cameras on me at all times, I couldn't get out of bed without letting the nurses know, they stood outside of the bathroom (in case something happened), and I had a GIANT trail of wires from the wall into the bathroom and a purse of wires I had to carry (see photo) and my head weighed like 500 pounds (an exaggeration, sure, but I don't feel like it's that much of one), and I had to just stay there... I could bring my computer, I had a TV, my mom and Randy kept me company, but there wasn't much to do... it was boring. It was depressing. It was emotional. Thank you snapchat for fun filters.
They took me off of my medicine pretty much immediately to see what sort of activity happens when I'm not on the medicine... and pretty much immediately, I had a seizure. And they tried all sorts of fun tricks to try and make me have seizures- strobe lights, sleep deprivation, hyperventilation, etc. It was super great. (Can you feel the sarcasm through your screen?) It was exhausting and horrible and it made my body hurt.
BUT we learned that my seizures are coming from the right temporal lobe, I occasionally have seizures in my sleep, sometimes I have seizures so small I'm not even aware that I'm having them but they registered on the machine, and loads of other fun stuff. The doctors there decided that a 5 day stay was long enough- and THANK GOODNESS. I had Cabin Fever by Day 2.
My doctors were very excited and said it looked like I was a great candidate for surgery. They explained that there were a few more tests I would have to have done to determine everything and then they would have to present my case in front of a board of epilepsy specialists and neurologists and then once all of that was done, we would know if surgery was the thing to do.
Fast forward to September....
September 14th, I had a PET scan. I had to fast for 5 hours and then they injected a glucose solution into my arm to see what happened and how my brain dealt with that. Fun fact: I am claustrophobic. They let me take an anti-anxiety pill so I was nice and relaxed and sleepy. And right when I was starting to become aware of the fact that I was in a giant tube, the test was over.
September 15th, I had a functional MRI. This is an MRI that requires you to "play along" as one of the techs put it. They have you do things like "Move the fingers on your right hand", and you have to move them a certain way- but without moving the rest of your arm, because if you move too much, you'll "move your brain" as the video said, and that will result in blurry images. Or they might show you a picture of a comb and you have to think the word "comb" and think of what you use a comb for. Or it will show you a police car and say "Think of the sound a police car makes" and you're supposed to think of the word "siren" and you're like me and you think "Weeeeeoooooweeeeoooooweeeoooo.... oh shit! NO! Shit! Siren. They want siren! Oh my god. I'm a spaz. Siren!" And then you have to hold off the giggle attack that's about to happen.
During this MRI, I was not allowed to take the anti-anxiety pill, but I was told that they would keep me distracted so I wouldn't need it, but they needed me alert. And you know what? It ALMOST worked... At the end of the test, Bob the technician said "OK, Katie, now I just need to take images, your part in this is over. Just relax. This first set is going to be about six minutes, then about a minute an a half, then about four minutes, then I have to review everything before I can let you go, ok?" And then I felt my body slide up into the tube a little bit more... And the mirror I had been viewing all of the pictures in that was allowing me to feel like I was not in a tiny tube was no longer viewing the outside of anything and was just looking at my feet, and the tube smashed in around my elbows... and there we go. It's OK though, I only cried a little a bit and then the test was over. lol
The thing with the functional MRI, it lit up the areas of my brain that responded to whatever I was supposed to be doing. And it told the doctors which part of my brain was responsible for language and whatever else they were looking for.
September 18th, I met with my neurologist to go over the July visit, the PET scan, and the functional MRI. She said we know the left side of the brain is responsible for language (which is true for most people but we needed to make sure), that the seizures are definitely coming from the right temporal lobe, there seems to be activity there kind of all of the time even when there isn't a seizure and that there is a little bit of activity happening on the left side as well- but she didn't seem really worried about that but we needed to double check that.
She says she is confident we will be able to get me off of my medication with one of three options, but each one sounds just as crazy and scary as the next.
If there is too much activity coming from the left, then I would need to get a implant- this implant would basically shut down any activity as it's happening. The minute my brain starts firing up, the implant would be like "No way!" and stop it. And this would allow the doctors to monitor it and see what's going on and where it's coming from as well.
If it's all just from the right side, I have two options-
There is the laser option, which just kind of zaps the spots where the seizures are coming from and stops them and there you go. But it's a newer option and there's not a lot of data on the long term effectiveness. It's a short recovery period, but who knows if the seizures will come back in like 5-10 years?
And then there is the big surgery where they go in and they say "This is where the seizures are coming from" and they take that part of my brain out. And that is why they needed to know where my language was coming from. They needed to make sure they wouldn't be damaging anything if they went in there and took something out. And yes, that's scary. It's terrifying. And the recovery period is longer. But people have a high success rate with it. And they go seizure free for the rest of their lives with this surgery. And that sounds awesome.
And I know- "Take out a part of your brain?!" I know! .... But guys... Seizures are more serious than a lot of people realize or understand. Yes, I can get seriously hurt while having one, but it's not just that. There are a lot dangers people don't realize are associated with seizures. And I would rather risk taking out part of my brain.
I was scheduled for a neuropsych exam on October 17th, which was the final test to see which surgery option was going to work the best for me, but it was moved to September 25th. This is a series of brain teasers basically, and I'm told this is going to help them figure out where my memories are stored, how other parts of my brain work and if anything else could be damaged if they do surgery.
My short term memory is already messed up and that's because of where my seizures are coming from. My doctor explained that the right temporal lobe is where short term memory is stored, and that's why I can't remember anything, it's probably when my brain is having activity that I am struggling to remember something.
I also found out that my auras- the precursors to my seizures- count as seizures. So all of the times I thought, "Oh that was just an aura, it didn't turn into a seizure", she said it counts as a seizure... so that's disappointing.
Two days ago, Randy came into the living room where I was watching TV, for some reason he decided to check on me. And apparently I told him I wasn't feeling well. He took me to the bedroom to lay down. And thank goodness he did. I had, what he described as a "pretty bad" seizure. My body hurt, a lot. And I was on the bed... surrounded by pillows and soft things. I can't imagine what would have happened if I had been alone in the living room, in the rocking chair that I am sure I would have fallen out of, next to the table I probably would have smacked my head on. It's been two days and I finally feel normal again. Or as normal as I can, all things considered.
Today I am ending the blog with this note: I started this blog not just so I could try make sense of all of this in my head, but so I could try to bring some Epilepsy Awareness.... even if it's just to like five friends... If you read this and now you are made more aware of different seizure types, I feel like I did something, you know? People don't realize there's more to epilepsy than just falling on the floor and convulsing.
Ask your friend who looks like they're daydreaming if they're OK... maybe they're not daydreaming.
Ask your child who is getting in trouble at school for not paying attention... maybe it's not ADD or whatever the teachers want to label them with...
Your klutzy friend who also has bad migraines? Maybe it's something else and she has crappy doctors.
While blogging, I unfortunately had a complex partial seizure.... so another day, another seizure. The count is at zero, but I can't wait until the day I can say "I can't remember the last time I had a seizure".
I blog to sort it out. I blog to bring awareness. Katie VS Epilepsy. I'm determined to win this battle.
Looking lovely in head wraps in July.....
My purse full of wires
Thursday, August 24, 2017
“The world breaks everyone and afterward many are strong at the broken places.”
In this case, the world broke my brain.
And in turn, broke me... And now I'm trying to be strong again. I'm not there yet, but damn, I love me some Hemingway.
I think it's fair to say anyone who knows me would describe me as an optimist. I have often been described as "sunshine", or "bubbly", or my favorite "rainbows and butterflies".... I am a happy person. I am annoyingly happy. I am one of those people that draw in other people because I have that sort of energy. I'm not saying this to brag or to ... whatever... I'm saying this because other people have said it about me.
When I was going through my divorce, and I didn't understand why my ex-husband wouldn't let me help him through his depression... and why I seemed to draw in people with depression- my best friend has it, most of my closest friends have it actually, and now my ex, and just so many people close to me have it, and I watched SO many people in high school go through this battle... and I felt like I would meet these people and they would come to me and it was almost the first thing out of their mouth.
"Hi, I'm Katie, nice to meet you."
"Hi, I have depression. Can you fix it?"
And I know that's not how it actually happened but sometimes it felt that way.
And my friend, she looked at me, and she said, "Of course they did that. Look at you. They saw you and your happiness and your light and they wanted to suck the happiness from your rainbow. They wanted a hit of whatever you had going on."
And I never thought of it that way... but it TOTALLY made sense once she said it that way.
So let's jump into my timeline after I've stopped driving and things are rocky in the seizure world... I'm trying to figure out life. I can't drive. I've two kids in school, one who gets out at 11:20, one who gets out at 2:15 (except on Wednesday when he's out at 1), both play sports, both are busy... And I can't drive. I can't do anything. So it's up to their soon to be stepdad, their dad, and the grandparents. And they are all AMAZING. They're shifting lunch breaks and meetings and days off and everything around and doing so many things to help and I'm just... here. Feeling useless. And helpless.
Not only can I not drive but it's dangerous for me to take a shower without supervision because if I have a seizure when I'm in there, I can get seriously injured, or drown- so I have to have someone in the bathroom with me. Or I have to have the door open. I use to LOVE to take a long bubble bath at the end of the day.... Not anymore. Can't do that. No more reading in the bath... So I hardly read anymore. It's weird how that's just kind of gone- I can't find a good place to read now- that was where I got privacy and was left alone. And I don't get that now. I am not left to relax anymore.
So my parents and my fiancé are dealing with shuttling my kids around and dealing with me slipping into and out of these weird seizures that we were told were absence seizures but now were are told may be something else and I'm given a new medicine. And I'm getting depressed. And my "light" is fading....
It's been far too long of dealing with this. My mom finds a doctor at Stanford who specializes in epilepsy. Not just that, but in WOMEN with epilepsy... and women who have thyroid disorders.. and we send her my information. And she agrees to see me. And it's amazing. And we are so excited. And she will see me after my wedding. Perfect.
Jump to April.
I'm getting married on April 29.
The Tuesday before the wedding, my dad and I head down to LAX to pick up my cousin and my uncle who flew in from Indiana for the wedding. We brought them back up to Santa Maria and we were having a great time visiting and talking and catching up.
I went into the living room to talk to my son. He was in a rocking chair and had a blanket on... I was telling him it was time to do homework, so I took his blanket off. He grabbed it, but I still had one end. We had a little tug-of-war going on, and he was rocking in the chair, and we went back and forth, just teasing each other. And as we discussed homework and how he didn't want to do it and how he'd much rather have a happy meal, and could I please take him to McDonald's, I laughed and said "Mommy can't take you anywhere, you know I can't drive."
He smiled and said "Oh yeah, why aren't you driving again?"
I said "My brain is still broken."
And right on cue, I felt an aura. I looked at him and started to say "Go get your pappa."
But instead, I woke up in an ambulance.
Remember the back and forth with the blanket? Right as he pulled me towards him, I fell flat on my face on the hardwood floor. He thought I was joking at first. Both of my kids did. My daughter was in the room too. My poor sweet babies were the only ones in the room and saw the most violent seizure to date.
When I came to in the ambulance, I had blood all over my hands and couldn't figure out why. I could hear Randy's voice. He had refused to NOT get in the ambulance. He told them he wasn't going to drive separately and they had to let him ride along.
I had fallen down on my face, and then convulsed and repeatedly hit my face against the floor. The kids, as I said, thought I was joking at first. I had shown them a PBSkids video about seizures so Brody quickly realized this wasn't the case and he yelled out for the grown ups. My parents said when they came into the room, they just saw blood everywhere and couldn't figure out what was going on. My sweet cousin just whisked the kids away into the backyard as quickly as she could to go play.
I bruised my face up pretty bad and almost killed my front tooth off but somehow it healed itself (after it turned gray, it decided to heal). Thank goodness my sister in law is amazing with makeup and you can't really tell I have bruises in my wedding pictures!
This is still a really hard thing for me to talk about. I hate the thought of my kids seeing me like that. I hate thinking about how terrifying that must have been for them. They're both still very shaken by the whole thing, as we all are. But they will bring it up from time to time- Quinn more than Brody. The other day, I opened my eyes wide as I listened to her story and she said "Mom! Don't do that. When you open your eyes big like that, I think you are going to faint again because your eyes did that before you fainted and had your seizure." And she will just say things like that from time to time.
And Brody has witnessed a number of complex partial seizures. And the poor sweet boy is terrified whenever he sees me looking anything less than 100%.
I met with the Stanford doctor after the wedding. And I had to relive that moment. And it's so hard. Typing it is difficult but actually saying the words to someone who knows the questions to ask, who wants the details.. it was awful. I cried. My mom cried. The doctor looked like she might cry. Anytime one of the kids brings up what it was like for them to relive that moment, it breaks my heart. I can't imagine what it was like for them in that moment.
And now I struggle with work, with not driving, with knowing my kids are terrified of pretty much anything I do... and I feel so ridiculous. Here I am, in my 30's, and I can't shower on my own. I can't take my kids anywhere. I can't really be left alone. I pretty much can't use the stove if there isn't an adult around. I NEED a grownup at all times even though I am a grownup.
My medicine makes me bitchy, or grumpy, or forgetful, or tired, or my personal favorite- a drunk sloth. And I can't function like this. The one med that works the best, but still not well enough, makes my hair fall out- I cry almost every time I wash my hair. It's horrible. Handfuls of hair just fall out. And the companion medication to that one is making me gain weight... When I met my husband, or not met because I've known him forever, but re-connected with him, I looked great! I loved the way I looked, I was confident and full of energy and felt really great about myself. I'm now 40 pounds heavier and losing my hair... Not feeling so great.
On top of that, I feel like an idiot. I am forgetting easy things- how to reply to emails, what capris are called, how old I am, what month it is.. next I will probably forget my own name.
All of this, it's depressing as hell. I am depressed. And I've never really felt this before. Sure, I've been sad. I went through a divorce, that was sad. It was a hard thing to go through. But I powered through, I got over it. This though... this is tearing me down. It's breaking me.
I'm a pretty stubborn person who has and continues to put up with a lot. But this is too much. I am losing track of my days. I am losing track of my life. And it's too much.
I never thought that anything could "suck the happiness from my rainbow" but well played, Epilepsy, you happiness sucking vampire bitch.
And the count goes back to zero.
And in turn, broke me... And now I'm trying to be strong again. I'm not there yet, but damn, I love me some Hemingway.
I think it's fair to say anyone who knows me would describe me as an optimist. I have often been described as "sunshine", or "bubbly", or my favorite "rainbows and butterflies".... I am a happy person. I am annoyingly happy. I am one of those people that draw in other people because I have that sort of energy. I'm not saying this to brag or to ... whatever... I'm saying this because other people have said it about me.
When I was going through my divorce, and I didn't understand why my ex-husband wouldn't let me help him through his depression... and why I seemed to draw in people with depression- my best friend has it, most of my closest friends have it actually, and now my ex, and just so many people close to me have it, and I watched SO many people in high school go through this battle... and I felt like I would meet these people and they would come to me and it was almost the first thing out of their mouth.
"Hi, I'm Katie, nice to meet you."
"Hi, I have depression. Can you fix it?"
And I know that's not how it actually happened but sometimes it felt that way.
And my friend, she looked at me, and she said, "Of course they did that. Look at you. They saw you and your happiness and your light and they wanted to suck the happiness from your rainbow. They wanted a hit of whatever you had going on."
And I never thought of it that way... but it TOTALLY made sense once she said it that way.
So let's jump into my timeline after I've stopped driving and things are rocky in the seizure world... I'm trying to figure out life. I can't drive. I've two kids in school, one who gets out at 11:20, one who gets out at 2:15 (except on Wednesday when he's out at 1), both play sports, both are busy... And I can't drive. I can't do anything. So it's up to their soon to be stepdad, their dad, and the grandparents. And they are all AMAZING. They're shifting lunch breaks and meetings and days off and everything around and doing so many things to help and I'm just... here. Feeling useless. And helpless.
Not only can I not drive but it's dangerous for me to take a shower without supervision because if I have a seizure when I'm in there, I can get seriously injured, or drown- so I have to have someone in the bathroom with me. Or I have to have the door open. I use to LOVE to take a long bubble bath at the end of the day.... Not anymore. Can't do that. No more reading in the bath... So I hardly read anymore. It's weird how that's just kind of gone- I can't find a good place to read now- that was where I got privacy and was left alone. And I don't get that now. I am not left to relax anymore.
So my parents and my fiancé are dealing with shuttling my kids around and dealing with me slipping into and out of these weird seizures that we were told were absence seizures but now were are told may be something else and I'm given a new medicine. And I'm getting depressed. And my "light" is fading....
It's been far too long of dealing with this. My mom finds a doctor at Stanford who specializes in epilepsy. Not just that, but in WOMEN with epilepsy... and women who have thyroid disorders.. and we send her my information. And she agrees to see me. And it's amazing. And we are so excited. And she will see me after my wedding. Perfect.
Jump to April.
I'm getting married on April 29.
The Tuesday before the wedding, my dad and I head down to LAX to pick up my cousin and my uncle who flew in from Indiana for the wedding. We brought them back up to Santa Maria and we were having a great time visiting and talking and catching up.
I went into the living room to talk to my son. He was in a rocking chair and had a blanket on... I was telling him it was time to do homework, so I took his blanket off. He grabbed it, but I still had one end. We had a little tug-of-war going on, and he was rocking in the chair, and we went back and forth, just teasing each other. And as we discussed homework and how he didn't want to do it and how he'd much rather have a happy meal, and could I please take him to McDonald's, I laughed and said "Mommy can't take you anywhere, you know I can't drive."
He smiled and said "Oh yeah, why aren't you driving again?"
I said "My brain is still broken."
And right on cue, I felt an aura. I looked at him and started to say "Go get your pappa."
But instead, I woke up in an ambulance.
Remember the back and forth with the blanket? Right as he pulled me towards him, I fell flat on my face on the hardwood floor. He thought I was joking at first. Both of my kids did. My daughter was in the room too. My poor sweet babies were the only ones in the room and saw the most violent seizure to date.
When I came to in the ambulance, I had blood all over my hands and couldn't figure out why. I could hear Randy's voice. He had refused to NOT get in the ambulance. He told them he wasn't going to drive separately and they had to let him ride along.
I had fallen down on my face, and then convulsed and repeatedly hit my face against the floor. The kids, as I said, thought I was joking at first. I had shown them a PBSkids video about seizures so Brody quickly realized this wasn't the case and he yelled out for the grown ups. My parents said when they came into the room, they just saw blood everywhere and couldn't figure out what was going on. My sweet cousin just whisked the kids away into the backyard as quickly as she could to go play.
I bruised my face up pretty bad and almost killed my front tooth off but somehow it healed itself (after it turned gray, it decided to heal). Thank goodness my sister in law is amazing with makeup and you can't really tell I have bruises in my wedding pictures!
This is still a really hard thing for me to talk about. I hate the thought of my kids seeing me like that. I hate thinking about how terrifying that must have been for them. They're both still very shaken by the whole thing, as we all are. But they will bring it up from time to time- Quinn more than Brody. The other day, I opened my eyes wide as I listened to her story and she said "Mom! Don't do that. When you open your eyes big like that, I think you are going to faint again because your eyes did that before you fainted and had your seizure." And she will just say things like that from time to time.
And Brody has witnessed a number of complex partial seizures. And the poor sweet boy is terrified whenever he sees me looking anything less than 100%.
I met with the Stanford doctor after the wedding. And I had to relive that moment. And it's so hard. Typing it is difficult but actually saying the words to someone who knows the questions to ask, who wants the details.. it was awful. I cried. My mom cried. The doctor looked like she might cry. Anytime one of the kids brings up what it was like for them to relive that moment, it breaks my heart. I can't imagine what it was like for them in that moment.
And now I struggle with work, with not driving, with knowing my kids are terrified of pretty much anything I do... and I feel so ridiculous. Here I am, in my 30's, and I can't shower on my own. I can't take my kids anywhere. I can't really be left alone. I pretty much can't use the stove if there isn't an adult around. I NEED a grownup at all times even though I am a grownup.
My medicine makes me bitchy, or grumpy, or forgetful, or tired, or my personal favorite- a drunk sloth. And I can't function like this. The one med that works the best, but still not well enough, makes my hair fall out- I cry almost every time I wash my hair. It's horrible. Handfuls of hair just fall out. And the companion medication to that one is making me gain weight... When I met my husband, or not met because I've known him forever, but re-connected with him, I looked great! I loved the way I looked, I was confident and full of energy and felt really great about myself. I'm now 40 pounds heavier and losing my hair... Not feeling so great.
On top of that, I feel like an idiot. I am forgetting easy things- how to reply to emails, what capris are called, how old I am, what month it is.. next I will probably forget my own name.
All of this, it's depressing as hell. I am depressed. And I've never really felt this before. Sure, I've been sad. I went through a divorce, that was sad. It was a hard thing to go through. But I powered through, I got over it. This though... this is tearing me down. It's breaking me.
I'm a pretty stubborn person who has and continues to put up with a lot. But this is too much. I am losing track of my days. I am losing track of my life. And it's too much.
I never thought that anything could "suck the happiness from my rainbow" but well played, Epilepsy, you happiness sucking vampire bitch.
And the count goes back to zero.
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