Sigh
The sigh is for myself, haha.
I think I've decided the only way I can actually finish a blog post is to just sit down and force myself to finish it in one sitting. If I get distracted or get up, it's not going to happen. Sigh.
Right now I'm watching Friends on Netflix, so let's see if I can make it through without distraction ;)
HAH!
I know I have been totally absent from this blog for a few months, but I haven't quite had the words these days. I finally wrote a post at the beginning of December, but I never posted it for anyone to see. At first it was because I never got around to it, but then I just couldn't handle the sad irony. I wrote about how it really felt like things were turning around for us and we were going into a new season. While I still believe that's true, some crazy things have been happening. The day after I wrote that post (seriously. the next day...sigh) I had a crazy episode slightly similar to what used to happen to me. I had no idea what was happening, but it was terrifying! My entire body suddenly began to tingle, then everything went numb - kind of like when your arm goes to sleep, but it was head to toe. At the time, I was just sitting on the floor playing with the cats and Annie (the little gray one) was laying in my lap. So basically, I wasn't doing anything. I decided to just stay calm and let it pass, but I started getting a little woozy. I was still convinced it was only going to last a second, but then I felt it get stronger and I knew I needed to get my phone to call Randy. My mind suddenly felt like it was in a deep, thick fog and I couldn't quite get to it. It went from being weird to scary very quickly! So I tried to push Annie off my lap, who was about 3lbs at the time, and it felt like she was a bag of weights. I could barely lift her! I remember crawling to the doorway to go get my phone in the living room and after that, I have no memory of how I made it down the hall. I remember getting to my phone on the couch and calling Randy, but everything else is so fuzzy. I remember the panic when I finally reached him, though. My mouth felt like it wasn't working. My tongue was heavy and my speech was slurring. I remember knowing I needed to get off the phone because words were escaping me and my mouth wasn't going to work much longer. I remember hearing the terror in Randy's voice, but I don't remember what he said. He called his parents to go help me because they could get home faster than he could, and by the time they arrived it was almost over. I don't remember much other than not being able to speak. When it finally went away, I was so exhausted I couldn't keep my eyes open. I fell asleep while we were talking and slept around an hour. Since no one knew what had happened, we weren't entirely sure if I should be sleeping, but I couldn't stay up for anything. So I called my neurologist and they said I needed to go to the ER immediately. They were concerned I was having a stroke, and to be honest, so were the rest of us.
Fortunately, the ER got us in and out pretty quickly (3 hours!) and told us there was nothing they could do after they made sure there was nothing emergency-related happening. They checked for a stroke, kidney failure, and a few other things that all came back negative, so they said to follow up with the neurologist. It was a little discouraging, but the doctor was super nice! I didn't want to be in the ER anyway, so it worked out.
So I met with the neurologist and they said the words I was absolutely dreading: "we think it was a seizure." WHAT?! NO! I had been un-diagnosed with epilepsy TWO YEARS ago! So they sent me to their seizure specialist and he said the other words I was dreading..."sounds like epilepsy." He was extra convinced when I told him I've been having pretty intense concentration and memory issues for the last 2 years. I honestly hadn't thought much about it until he asked. I knew it had gotten worse, but it kind of started when I was on the Topamax and Keppra for seizures last time. Those medications are known to cause those issues, so I was thinking it was kind of a residual effect of the meds. When I said that to him, he was like, "uh, no. That should have ended no later than a month after you stopped the medications. It certainly wouldn't continue 2 years later." He said he believed I was having temporal lobe seizures (what they thought I had the last time we went through all of this), which often damages the short-term memory with each seizure. He said if I didn't get them under control I could lose my short-term memory forever. He wants me to go on the medication Lamictal ASAP regardless of the EEG results. Originally, Randy and I had decided I wouldn't go back on medication because it turned me into a zombie last time. I wasn't myself, and I didn't want to be that person again. That person didn't want to live like that. However, considering I could lose my memory without it, and he assured me this medication did not cause those side effects, we agreed it was the best option. Based on my research, the worst reaction people have to this medication was a rash.
The worst part of it all: according to state law, I'm no longer allowed to drive until I have been seizure free for 6 months. Sigh.
I mean, I guess having epilepsy is really the worst part, but being immobile is pretty unfortunate as well. I can't even go to the store by myself.
Turns out, since I've never actually had a seizure while I've had an EEG on my head, there's no way to un-diagnose me. He said it's really the only thing that made sense. So he ordered a routine EEG, which is one that only takes about an hour, instead of the 3 day one (ambulatory EEG) that requires electrodes glued to my scalp connected to a bag I have to wear around. The routine one is MUCH more pleasant. Ya know, as pleasant as an EEG can be. Instead of putting awful glue for the electrodes (that I'm apparently allergic to now) they use a cap and squirt gel into it. Then they flash the strobe light and make you hyperventilate to try to induce a seizure. Yet again, no seizure. So Randy's wonderful parents then took me to my favorite Chinese restaurant. Almost exactly an hour and a half later, I had a seizure. For the first time ever, it was identical to the one earlier in the month. It was pretty depressing that it was just after the EEG was removed. Yet again, I CRASHED after it happened. I barely stayed awake through the drive home.
So I messaged my doctor on the portal app (which is the greatest thing ever!) and they said I needed to have the ambulatory EEG as well, with the stupid glue and the bag. As usual, I never had a seizure with it on, but we're hoping it will provide a little insight. Either way, I'm actually looking forward to being on the medication. My memory and concentration are awful, and I have a sweet friend with epilepsy on the same medication and she said she feels great on it!
I had the ambulatory EEG this past week and it was fine other than it leaving blistery sores everywhere the electrodes were glued. Benadryl and neosporin have been my best friends for the sores on my forehead and behind my ears :(
My next appointment is Monday the 19th, so prayers would really be appreciated! Hoping for some answers!
On top of it all, I was unexpectedly fired from my job my first day back after being in the hospital. I was given no reason other than "It's not working out" and any further questions from me were answered with "I can't tell you that." It was completely out of the blue and absolutely devastating. They only said that because it was 2 weeks shy of the end of my 6 month "probationary period" they did not have to site a reason. I had never once been reprimanded or given any warning that it "wasn't working". I had only been praised for my work and told constantly I was doing a great job. What makes it worse is that every former coworker I have heard from has been completely shocked and almost as confused as I was. They all confirmed the praise I had heard from my superiors.
Honestly, it was all awful and completely devastating, but 2 days later I was informed I can't drive anyway. My very first thought when they told me I couldn't drive was, "well, I guess it's a good thing I don't have a job anymore." We believe my health might have had something to do with their decision, but we're choosing to let the Lord handle it. Every time my mind wanders to that angry place I keep hearing "Exodus 14:14 - The Lord will fight for you, you need only to be still." Pretty convicting.
It all works out, though through unfortunate circumstances.
Through it all, I'm choosing to look on the positive. I now have time to do what I want to do, I have time to clean the house, I have time to read, I have time to do a devotional, I have time to exercise, I have time to rest when I need it without feeling guilty about needing to be at work in an hour, I have time to play with the cats and dog - I just have time. It's nice.
It has taken me a bit to get back on my feet, though. I had a few weeks where I only wanted to lay on the couch or in bed, and some days still go like that, but each day is getting better. I've been trying to make a point to do at least one thing around the house a day. Whether it's loading/unloading the dishwasher or a load of laundry, I've been trying to cut myself some slack. It has been freeing.
I'm so thankful for my sweet husband through all of this. He is so great! Love you, sweetheart!
We're gonna make it through this. I know it.
UPDATE 01/19/2015: I saw one of my neurologists today and he said he wanted to rule a few things out for sure before medicating me for epilepsy after the EEGs came back fine. The only other thing he can think of other than seizures is an autonomic condition. He thinks it's possible my blood pressure might be randomly plummeting, causing similar issues. He referred to it as vasovagal syncope...it took me at least 3 times to figure out what he was saying, hahaha. After talking with him a little more, he kind of whispers (he's EXTREMELY soft-spoken) that what I'm describing sounds like this extremely rare condition that he has only heard of one or two cases of, but he isn't 100%. So he's sending me to a cardiologist to have a test called a tilt table test where they basically strap me to a board, start tilting it around, and try to make me pass out. Exciting, right?
He said he just wanted to be 100% before he stuck me with this label of epilepsy and had to be on possible unnecessary medication for the rest of my life. I'm both grateful and frustrated, but I know he's right. I'll post an update after I hear back from the cardiologist. Thanks for reading!
I think I've decided the only way I can actually finish a blog post is to just sit down and force myself to finish it in one sitting. If I get distracted or get up, it's not going to happen. Sigh.
Right now I'm watching Friends on Netflix, so let's see if I can make it through without distraction ;)
HAH!
I know I have been totally absent from this blog for a few months, but I haven't quite had the words these days. I finally wrote a post at the beginning of December, but I never posted it for anyone to see. At first it was because I never got around to it, but then I just couldn't handle the sad irony. I wrote about how it really felt like things were turning around for us and we were going into a new season. While I still believe that's true, some crazy things have been happening. The day after I wrote that post (seriously. the next day...sigh) I had a crazy episode slightly similar to what used to happen to me. I had no idea what was happening, but it was terrifying! My entire body suddenly began to tingle, then everything went numb - kind of like when your arm goes to sleep, but it was head to toe. At the time, I was just sitting on the floor playing with the cats and Annie (the little gray one) was laying in my lap. So basically, I wasn't doing anything. I decided to just stay calm and let it pass, but I started getting a little woozy. I was still convinced it was only going to last a second, but then I felt it get stronger and I knew I needed to get my phone to call Randy. My mind suddenly felt like it was in a deep, thick fog and I couldn't quite get to it. It went from being weird to scary very quickly! So I tried to push Annie off my lap, who was about 3lbs at the time, and it felt like she was a bag of weights. I could barely lift her! I remember crawling to the doorway to go get my phone in the living room and after that, I have no memory of how I made it down the hall. I remember getting to my phone on the couch and calling Randy, but everything else is so fuzzy. I remember the panic when I finally reached him, though. My mouth felt like it wasn't working. My tongue was heavy and my speech was slurring. I remember knowing I needed to get off the phone because words were escaping me and my mouth wasn't going to work much longer. I remember hearing the terror in Randy's voice, but I don't remember what he said. He called his parents to go help me because they could get home faster than he could, and by the time they arrived it was almost over. I don't remember much other than not being able to speak. When it finally went away, I was so exhausted I couldn't keep my eyes open. I fell asleep while we were talking and slept around an hour. Since no one knew what had happened, we weren't entirely sure if I should be sleeping, but I couldn't stay up for anything. So I called my neurologist and they said I needed to go to the ER immediately. They were concerned I was having a stroke, and to be honest, so were the rest of us.
Fortunately, the ER got us in and out pretty quickly (3 hours!) and told us there was nothing they could do after they made sure there was nothing emergency-related happening. They checked for a stroke, kidney failure, and a few other things that all came back negative, so they said to follow up with the neurologist. It was a little discouraging, but the doctor was super nice! I didn't want to be in the ER anyway, so it worked out.
So I met with the neurologist and they said the words I was absolutely dreading: "we think it was a seizure." WHAT?! NO! I had been un-diagnosed with epilepsy TWO YEARS ago! So they sent me to their seizure specialist and he said the other words I was dreading..."sounds like epilepsy." He was extra convinced when I told him I've been having pretty intense concentration and memory issues for the last 2 years. I honestly hadn't thought much about it until he asked. I knew it had gotten worse, but it kind of started when I was on the Topamax and Keppra for seizures last time. Those medications are known to cause those issues, so I was thinking it was kind of a residual effect of the meds. When I said that to him, he was like, "uh, no. That should have ended no later than a month after you stopped the medications. It certainly wouldn't continue 2 years later." He said he believed I was having temporal lobe seizures (what they thought I had the last time we went through all of this), which often damages the short-term memory with each seizure. He said if I didn't get them under control I could lose my short-term memory forever. He wants me to go on the medication Lamictal ASAP regardless of the EEG results. Originally, Randy and I had decided I wouldn't go back on medication because it turned me into a zombie last time. I wasn't myself, and I didn't want to be that person again. That person didn't want to live like that. However, considering I could lose my memory without it, and he assured me this medication did not cause those side effects, we agreed it was the best option. Based on my research, the worst reaction people have to this medication was a rash.
The worst part of it all: according to state law, I'm no longer allowed to drive until I have been seizure free for 6 months. Sigh.
I mean, I guess having epilepsy is really the worst part, but being immobile is pretty unfortunate as well. I can't even go to the store by myself.
Turns out, since I've never actually had a seizure while I've had an EEG on my head, there's no way to un-diagnose me. He said it's really the only thing that made sense. So he ordered a routine EEG, which is one that only takes about an hour, instead of the 3 day one (ambulatory EEG) that requires electrodes glued to my scalp connected to a bag I have to wear around. The routine one is MUCH more pleasant. Ya know, as pleasant as an EEG can be. Instead of putting awful glue for the electrodes (that I'm apparently allergic to now) they use a cap and squirt gel into it. Then they flash the strobe light and make you hyperventilate to try to induce a seizure. Yet again, no seizure. So Randy's wonderful parents then took me to my favorite Chinese restaurant. Almost exactly an hour and a half later, I had a seizure. For the first time ever, it was identical to the one earlier in the month. It was pretty depressing that it was just after the EEG was removed. Yet again, I CRASHED after it happened. I barely stayed awake through the drive home.
So I messaged my doctor on the portal app (which is the greatest thing ever!) and they said I needed to have the ambulatory EEG as well, with the stupid glue and the bag. As usual, I never had a seizure with it on, but we're hoping it will provide a little insight. Either way, I'm actually looking forward to being on the medication. My memory and concentration are awful, and I have a sweet friend with epilepsy on the same medication and she said she feels great on it!
I had the ambulatory EEG this past week and it was fine other than it leaving blistery sores everywhere the electrodes were glued. Benadryl and neosporin have been my best friends for the sores on my forehead and behind my ears :(
My next appointment is Monday the 19th, so prayers would really be appreciated! Hoping for some answers!
On top of it all, I was unexpectedly fired from my job my first day back after being in the hospital. I was given no reason other than "It's not working out" and any further questions from me were answered with "I can't tell you that." It was completely out of the blue and absolutely devastating. They only said that because it was 2 weeks shy of the end of my 6 month "probationary period" they did not have to site a reason. I had never once been reprimanded or given any warning that it "wasn't working". I had only been praised for my work and told constantly I was doing a great job. What makes it worse is that every former coworker I have heard from has been completely shocked and almost as confused as I was. They all confirmed the praise I had heard from my superiors.
Honestly, it was all awful and completely devastating, but 2 days later I was informed I can't drive anyway. My very first thought when they told me I couldn't drive was, "well, I guess it's a good thing I don't have a job anymore." We believe my health might have had something to do with their decision, but we're choosing to let the Lord handle it. Every time my mind wanders to that angry place I keep hearing "Exodus 14:14 - The Lord will fight for you, you need only to be still." Pretty convicting.
It all works out, though through unfortunate circumstances.
Through it all, I'm choosing to look on the positive. I now have time to do what I want to do, I have time to clean the house, I have time to read, I have time to do a devotional, I have time to exercise, I have time to rest when I need it without feeling guilty about needing to be at work in an hour, I have time to play with the cats and dog - I just have time. It's nice.
It has taken me a bit to get back on my feet, though. I had a few weeks where I only wanted to lay on the couch or in bed, and some days still go like that, but each day is getting better. I've been trying to make a point to do at least one thing around the house a day. Whether it's loading/unloading the dishwasher or a load of laundry, I've been trying to cut myself some slack. It has been freeing.
I'm so thankful for my sweet husband through all of this. He is so great! Love you, sweetheart!
We're gonna make it through this. I know it.
UPDATE 01/19/2015: I saw one of my neurologists today and he said he wanted to rule a few things out for sure before medicating me for epilepsy after the EEGs came back fine. The only other thing he can think of other than seizures is an autonomic condition. He thinks it's possible my blood pressure might be randomly plummeting, causing similar issues. He referred to it as vasovagal syncope...it took me at least 3 times to figure out what he was saying, hahaha. After talking with him a little more, he kind of whispers (he's EXTREMELY soft-spoken) that what I'm describing sounds like this extremely rare condition that he has only heard of one or two cases of, but he isn't 100%. So he's sending me to a cardiologist to have a test called a tilt table test where they basically strap me to a board, start tilting it around, and try to make me pass out. Exciting, right?
He said he just wanted to be 100% before he stuck me with this label of epilepsy and had to be on possible unnecessary medication for the rest of my life. I'm both grateful and frustrated, but I know he's right. I'll post an update after I hear back from the cardiologist. Thanks for reading!
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