Hospital Celebrity!

I know I haven’t written in awhile, a lot of exciting things have happened here in the Duffy life.

My baby sister had her first baby, and as Ty and I decided we were happy as a family of 4, I gave her all of our baby girl stuff. Tearful goodbyes to those tiny sweet newborn clothes, baby swing, rock n play…all the things 😂.

What a funny little surprise when my tearful goodbye was then later greeted by a positive pregnancy test! Obviously God, the universe, a higher power, fate, destiny, (whatever your belief) recognized those as tears of grief, because I had always wanted 3 or 4 kids.

As we prepared to welcome another little baby girl into our family, wouldn’t you know it- Hello Epilepsy.

I had been taking my Briviact and low dose Lamictal without much seizure activity at all. When pregnant your body metabolizes medications faster and therefore we have had to continue titrating my doses up. There were some things I wasn’t prepared for:

-The emotional roller coaster of pregnancy in combination with the anxiety of having a seizure and protecting the baby.

-Feeling like a terrible mother when a seizure does happen; thankfully not that often for me so far, but I am nervous about after labor and delivery.

-Enrolling in a study for Briviact in pregnant women. Because we had decided to be done having kids, this wasn’t even something I asked my neuro about.

-Monthly neuro check ups…holy Dr. Appointments!

-The hospital staff not knowing seizure medications

– the hospital pharmacy not being able to get Briviact (literally asked me to bring it with me from now on)

– Here’s the big one: I have been admitted 3 times, the first time I gave them my seizure medications so the nurses could scan and chart they gave my medications to me. No matter how many times I stressed that the medications are time sensitive they were HOURS late.

I don’t give them my medications now. They stay in my room with me, because as you all know- you cannot be hours late on your medications when you have epilepsy.

– I had to argue with a nurse that my 400mg extended release Lamictal that I take in the morning would not be the same as taking 200 mg regular acting Lamictal in the morning and 200 at night. I find this astonishing, as I have been a nurse for 10 years now 🙄.

As my epilepsy had been under control for my first 2 pregnancies and didn’t resurface until my daughter (baby #2) was born; I had no idea what to expect.

This has been an interesting journey to say the least.

I went through some very stressful business changes, as I believe I’ve mentioned my husband and I both own our own businesses. In combination with the epilepsy and stress I ended up having extreme anxiety and was put on Prozac, which my neuro said would be a good option given the medications I’m already on. All is good.

Except I just had a friend over who had her baby 2 weeks ago and was telling me how she is also on Prozac. She had a scheduled c-section due to medical issues and couldn’t figure out why the hospital staff started treating her and her husband really strangely and all kinds of Dra kept coming in to check on the baby. It turns out that Prozac shows up on toxicology reports as a benzodiazepine and sometimes opioids!

So here I am, on Prozac, Briviact (which my pharmacy has told me is a controlled substance) and Lamictal. Also hooked up to an IV for severe dehydration thanks to Hyperemesis Gravidium… today it took my home health nurse 8 trie to get an IV- EIGHT. So my arms look like those of a junkie 😂

Do I stand a chance if walking out with my baby? I mean, obviously yes- but doesn’t everyone get judged on first impressions? I do feel somewhat fortunate, also embarrassed, that the hospital staff know me very well: even the valet who now call me by my name and just hands over the ticket smiling. The hospital Valet know who I am now! They have a huge staff and probably see hundreds of people every day… talk about red carpet fame 😁🤣

Has anyone gone through pregnancy with epilepsy?

Tell me about your experiences with hospitalization and medications?

Are you labeled as a fall risk in the hospital? I expected to be, but was not 🤷‍♀️.

Living My Best Life, Concerts Included

As I’m sure many of you can attest, it has been a busy holiday season, at least at the Duffy house!

My husband turned 40 on Thanksgiving, so that was fun. I surprised him with concert tickets in New York City, and we had my parents come take care of our two littles. We had a blast, and I’m sure I’ll blog about it later in greater detail.

My husband is a huuuuge music lover, and so consequently I have become one too. It’s something that we share now, and really look forward to summer concert season. Red Rocks is not too far from our house, how lucky are we?! So we probably attend 20+ shows/year in Colorado. I have had great experiences with security and my epilepsy medications at every concert I have ever attended in Colorado (woo hoo!).

What I wanted to talk about today is a bad experience I had with my medications while attending a concert (in Las Vegas of all places), and also how I refuse to let those bad experiences or judgmental people stop me from doing the things I love.

In the previous post I talked about giving myself permission to say, “No”, so that I can have more opportunities to say “yes”. Zip lining would be a bad idea for me, plummeting to my almost certain death does not sound like a good time, at least to me. However, attending a concert almost always sounds like a good time, with little to no risk. The light shows do not affect my epilepsy, other than sometimes I feel dizzy, but I just sit down. I also wear my sunglasses and have noticed that it does actually help that dizzy feeling. You can even see in the bottom right picture, I have my sunglasses on top of my head while attending a concert in NYC.

There is something so freeing about live music. Personally I love the keyboards and the drums the best- my husband is through and through a guitar man (that’s how he woo’d me folks, he can play and write music). Feeling the vibrations in your chest is incredible, and this isn’t something that I’m making up, at Red Rocks there’s a special section up front for disabled and hearing impaired people. At one of my first shows I couldn’t figure out why the band had a woman doing sign language… and then I felt the music and understood that it isn’t all about the words or even hearing the instruments, it’s about the feeling.

So back to the point here:

I take my seizure medications with me everywhere (obviously), and so when we go to concerts I almost always get asked about them, because, you know, bag searches. It is surprising the number of people that are quite rude with their comments of “Why are you at a concert if you have epilepsy?” or my favorite “Seems like a smart choice” followed by an eye roll.  You better believe my response was something akin to “Wow, concert security woman, you really must be well educated on epilepsy. Allow me to assist- lights do not affect my seizure disorder, but thank you for your genuine concern for my wellbeing”. Please note- I said this with extreme sarcasm and she would not allow me to bring my bag inside… so I shoved both bottles of medications inside my jean pockets and threw my bag in the trash. I could’ve been nicer, but I was so annoyed, she basically called me stupid, right?!

This was in Las Vegas, where I expected security to be fairly loose, I mean, its Vegas. It was my own fault, I didn’t check the venue website for allowable bag sizes. At the MGM it’s ‘no larger than the size of a piece of paper’ and while my backpack was small (and purchased that very same day) it was slightly larger than the size of a piece of paper.

I could’ve let the ignorant security woman ruin my day, and maybe even got her boss involved and possibly gotten my bag in (it literally had 2 bottles of medications and my wallet). It wasn’t worth it to me, and I’m sure the people behind me appreciated my not holding up the line.

I learned a lesson along the way; check the event center’s policy on handbags and backpacks. So I’d like to pass on a few of the other things I’ve learned in regards to attending activities with epilepsy:

Bring your medications in their original bottle.

If allowed, bring in your own *empty* water bottle to fill up throughout your event.

Set an alarm on your phone to remind you to take your medications on time. The few times I haven’t, I’ve been surprised at how late it was when I remembered on my own. Time flies when you’re having fun, right?

Tell the people that you’re with about your condition so they’re at least aware. No need to get all dramatic about it though.

Locate the EMT office, all events will have a tent at the very least.

Wear some sort of medical ID- I have a bracelet, but they make necklaces as well.

Most of all, don’t stop having fun. Don’t let your disorder define your life. Keep exploring, making memories, and enjoying new things!

 

Permission to say, “No”:

My youngest sister and her husband came to visit for our Halloween party and to pick up some baby stuff that we are no longer using! We had such an amazing time with them, and I’m not sure if I wasn’t paying attention to my body needing rest or the stress of throwing a party for 50 people, or a combination of many things, but I had a pretty intense seizure Saturday night after the party. I was SO bummed because we had planned to go zip lining Sunday morning with my brother-in-law on a course in the mountains that we heard was really awesome.

Normally I don’t let my epilepsy stop me or ruin plans, but looking at my two amazing kiddos all I could think was, “If you have a seizure that’s it. There isn’t someone to catch you, your husband won’t be right there to make sure you don’t get hurt. So if you really want to go, you need to think about that”. And in a millisecond I made the decision to skip this particular event.

Was I upset? Yes. I really wanted to go zip lining. I didn’t want my epilepsy to get in the way.

I didn’t have a seizure on Sunday, and so maybe I would’ve gone and everything would’ve been fine. But maybe it wouldn’t have been, and that’s why I am 100% proud of myself for not letting my stubbornness and determination to “not let epilepsy define my life” make a decision that could have led to one final kiss on those sweet baby’s heads. It was a chance I was not willing to take.

These are the times that saying No isn’t even a hard choice to make.  It is a personal decision on whether or not to have kids for every single person, with epilepsy or without. For me, this has been the absolute best decision of my life. These kids inspire me every single day to live my best life. To be the best mom I can be, even when I feel like crap. Getting up in the middle of the night with my little girl is hard sometimes, but I can’t imagine my life any other way.

Sunday I said “No” so that I can have many more opportunities to say, “Yes”!

Lost the battle but not the war.

silhouette of mountains
Photo by Simon Matzinger on Pexels.com

Tomorrow is a new day. Repeat. Tomorrow is a new day.

I sit down to write tonight, after my kiddos are sleeping soundly and my house is tidied up, ready to let it all go. I wish I could stand on the summit of a mountain peak and just scream and ugly cry until nothing is left.

I am scared that I’m going to forget my life. I’m afraid to fall asleep for fear of not waking up.

This sounds crazy, I know. Forget my life? Fall asleep and not wake up? What am I talking about?? How could I forget my life? I’m a healthy 30 year old woman, why would I not wake up? I have two amazing children and a wonderful husband all of which fill my life with so more love than I ever though possible. I live in a beautiful home, in a state with breathtaking mountain views; one of which I am lucky enough to see on my ride home from work. I would never forget this incredibly blessed life.

Yet, I managed to forget that I had a seizure last night. I got up this morning, did some work, grabbed my keys,  drove 15 minutes from my house to run an errand, and when my husband called to say he was coming home to pick me up so we could go to lunch together imagine his surprise when I said, “Oh! I’ll just meet you. I’m literally 5 minutes from there”. Imagine my surprise when he said, “WHAT?! You drove today?!? You had a seizure right before bed last night. And we agreed weeks ago that you weren’t going to drive. YOU initiated that conversation Amanda”.

I forgot. I forgot it all. And so then I went to lunch, insisted that I felt fine because I did. I honestly felt perfectly normal. I was shocked that I had a seizure the night before, usually I feel like a train wreck. When we went to leave I said, “Well, I’m just gonna run to the grocery store (less than 5 minutes away, and on my way home) since I’m out anyway. I have literally 3 things to grab real quick”. After asking me several times how I felt, my husband reluctantly agreed to let me drive to the grocery store. I stopped at the Starbucks in the grocery to grab a decaf Americano and chatted with a gentleman in line that had very obvious tremors in both arms and hands, ordered my drink and while I was waiting I got nauseous and then my chest started tingling. I called my husband, “How are you?” I asked.

“I’m fine… kinda tired and ready to take a nap before the kids get back from the park with the nanny”.

(I started to think that I’d be fine, that I wasn’t going to have a seizure and I should just say “OK” and hang up).

“Amanda,” he said, “How are you?”

“I need you to come get me,” I blurted out. “I don’t feel good,” and I quickly told him where I was. “I’m going to go sit in the car”.  My hands were shaking, my heart was racing and I had full body tingling. I was not fine. I hurried out of the grocery store and calmly got into my car, put on my seatbelt, and tried to relax. The red-haired woman putting her groceries into her green truck kept slamming the truck doors. Why did she have 4 doors open on the truck all at once? Why was everyone suddenly slamming their car doors?!? That was all I could hear and my world started fading away…

I don’t know how long I was out of it. But, like every time, when I realized what had happened I got super emotional. So many thoughts flooded my mind.  I could’ve been driving. I could’ve been alone with the kids. What if I hadn’t made it to the car? “Hold it together,” I kept telling myself, “You are stronger than this”.  And yet I am not. Not today.

My husband’s worried expression jostled me out of my car and into his. I couldn’t help but cry. Mostly out of frustration, but partly out of fear. I am terrified that I am going to forget my life.

In school I always had an amazing memory. I could remember my locker combinations, my credit card numbers, my bank routing and account numbers. It was impressive the amount of numbers I could keep locked away in my mind. And then out of the blue, sometime during college, I stared forgetting these things. I remember laughing with the front desk woman in the registrars office after she told me, “that’s not enough numbers” and I realized that I had given her my bank account number instead of my social security number like she had asked for. I would forget my locker combination at work and have to write in down in my planner. I started forgetting my log in and password information at the hospital; so I would put them into the Notes app on my phone. I have forgotten numerous passwords and even the combination to our safe. Instead of a steel trap, my mind is more akin to a wet paper bag.

I feel like I should say that forgetting that I had a seizure and then driving is not like me. I am not one to endanger anyone, or to take someone’s life into my own hands by driving recklessly. I was a trauma nurse. I worked to save people’s lives, not endanger them! I told my husband that I wasnt going to drive anymore. I don’t know what happened today. I wish I did.

Here I sit tonight, afraid to fall asleep because my seizures are getting worse and not better, even on medication.   This increases my risk of SUDEP or sudden unexpected death in epilepsy patients. I genuinely feel like I will die in my sleep. My neurologist has actually said the words “Brain surgery” to me. Surgery on my brain?!? A 5-7 day stay in the hospital hooked up to continuous EEG to see exactly where my seizures are occurring, and then removing part of my brain.

Tonight I can’t get over it. Tonight I just cry and pray that eventually we will find the right combination of medications.

Tomorrow is a new day.

October 23rd: SUDEP Awareness

SUDEP-campaign-adIt’s only fitting that I started a blog yesterday and then had cluster seizures for a large part of the evening and couldn’t finish it :). Alas, today is a new day!

What is SUDEP?

“SUDEP is the sudden, unexpected death of someone with epilepsy, who was otherwise healthy. In SUDEP cases, no other cause of death is found when an autopsy is done. Each year, about 1 in 1,000 adults and 1 in 4,500 children with epilepsy die from SUDEP. This is the leading cause of death in people with uncontrolled seizures.” Source Epilepsy Foundation: Click here to be directed to the Epilepsy Foundation website.

Take your medication(s).
Not some of the time, not most of the time… Every single time. I struggled with remembering if I had taken my morning does until someone on a support group I joined asked what other people do to remember to take their medications.

-Personally, I have to take 1 1/2 pills for one of my medications, so I take the first half in the morning and leave the other half in the pill cutter for the evening. I use one similar to this.

pill splitter

 

-Set an alarm on your phone and don’t shut it off until the pills are in your mouth. If you have a phone or alarm clock, this is free…

-Use a calendar and mark  / for the morning dose and  \ for the evening dose, so at the end of the day you have an x. Pocket calendars are online and in most stores for around $5- nothing fancy, just a very basic calendar. I found this one on amazon for 7.95 and it starts Nov 2018- Dec 2019. I like it because it’s monthly and also weekly- Ive found that I absolutely have to write things down or I forget; this one can be used for daily tasks and appointments too 🙂

Pocket Calendar

-Turn your pill bottle upside down after you take your morning dose, and then right side up after you take your evening dose. Also free 🙂

-Use a pill organizer with AM and PM. You can get these practically anywhere and they’re not terribly expensive. This one is 6.99 on amazon. Pill Organizer

Limit your alcohol intake:

I say limit because there’s evidence that suggests as intoxication levels rise, so does your risk of SUDEP. Does this mean zero alcohol? That’s up to your medical professional and you to decide. Personally, I go by how I’m feeling; if I have an aura or feel “off” I don’t drink at all. If I’m feeling fabulous and want a glass of red wine, I’ll have a glass or two; but that’s all.

alcohol blanket celebration champagne
Photo by freestocks.org on Pexels.com

The Epilepsy Foundation says this about alcohol and seizures,

“In small amounts, alcohol does not cause seizures. A drink or two now and then does not increase seizure activity.”

Click here to read more on alcohol and seizures.

Get enough sleep!

Take into account that everyone’s sleep needs are different.  Some people do well on 5 hours / night, others need 8 to 10 hours or more. In general, 7-8 hours of sleep a night is considered good, but the quality of sleep also needs to be considered.

Eat Well & Exercise regularly.

For me, this means following the Modified Atkins Diet and keeping my carbohydrate count at or below 10% of my caloric intake for the day. I plan to blog more about my diet therapy experience. Is this something that people want to

Limit stress.

A bog about reducing stress in my life is in the works! The Epilepsy Foundation has this to say about stress and epilepsy.

 

Life happened

While I was busy enjoying my twenties single and traveling for work; life happened in a most serendipitous way.

I met my husband in downtown Denver on the corner of 22nd and Market St while waiting for a cab after walking out of a REALLY bad date. A few very short months later we moved in together and an even shorter amount of time we became pregnant with our miracle child (Thank you NuvaRing).

T and I had been dating for a few months when I had my first recurrence. I was scrubbed into surgery, it was evening time but not late, and I remember feeling “funny”, like sort of faint but that I could power through it. And then I heard “Code Blue Main OR 1” over the hospital intercom.

“Oh my God! Did you guys call a code on me?!”

And then I was in the emergency room and my boyfriend (now he’s stuck with me for life 😁) was sitting in a chair distraught.

“Don’t worry babe. I’ll be fine. Sometimes this happens,” I say this (or something close to this) as the ER physician walks in.

“Amanda. Can you tell me your name?” <Yes. This is what he said. I swear to Christmas.

And then my memory is mush again.

I hit my head on the back table (which wouldn’t really mean much to you unless you know surgery lingo) before I hit the floor. Ok, because I want you to know what “the back table” is: on Greys Anatomy when they’re in surgery and someone passes a surgeon a tool- it comes from the back table (more or less… and we don’t call them tools, they’re instruments with very specific names). I caused them to have to set up a new back table with new instruments, delaying my patients surgery and causing him to endure longer anesthesia. Nobody had to explain this to me when I went back to work. I felt awful.

T convinced me to start a CBD regimen, which I followed very closely for a few months until SURPRISE we were pregnant.

I had a few absence seizures while pregnant, but starting an anti seizure medication while pregnant was not a good idea (so I was told).

And then I had a healthy baby boy. T and I decided that I should quit my job (the holidays, call hours, and stress level was too much for me). Aside from crippling post partum depression, which thankfully I got help for; everything was awesome for 2 years! No seizures 😊

We decided to have another baby and after a very complicated pregnancy, early delivery, and sleepless few months my epilepsy made a comeback tour. Times 100. I would wake up in the middle of the night and have anxiety about going back to sleep, convinced that if I did I would not wake back up. So I would stay awake until the morning when I felt safe enough to sleep because our nanny was with the kids.

T begged me to please go to a doctor. So I went to my PCP and she sent me to a seizure specialist. Dr F saved my life.

SUDEP. Sudden Unexpected Death in Epilepsy Patients. Dr F told me that I was at an incredibly high risk of SUDEP because my seizures weren’t controlled at all. I was having panic attacks that were quite possibly a real warning: you will die if you don’t get treated.

SUDEP is like SIDS for epilepsy patients: and please believe me when I say that in no way am I trying to be offensive to ANYONE by making this comparison. The CDC and Epilepsy Foundation both have great information about SUDEP https://www.cdc.gov/epilepsy/about/sudep/index.htm. https://www.epilepsy.com/learn/early-death-and-sudep/sudep

We started medication right away (like, I left the office with prescriptions and they were filled immediately).

And so now I’m here. Without a doubt, 100%, positively epileptic. Yes, I have epilepsy, specifically partial complex seizures of the temporal lobe. I have absence seizures quite frequently (sometimes several / day) and also tonic clonic seizures much less frequently (twice /month or so) and almost always at night.

I have epilepsy and identify as epileptic, but that isn’t WHO I am. I refuse to let epilepsy define my life, limit what I accomplish, or break my spirit.

So, that’s my story! Let’s talk epilepsy and life. I want to talk about my journey as a woman with epilepsy, being a mom, a wife, a successful business owner, and a lover of naps!

Getting Help… the first time

I took a leap of faith and moved to Colorado in 2011 for a travel nursing job in an operating room. I love working in the OR, and I was really good at it! I had been doing really well; with the exception that I never could wear the hoods in the total joint replacement surgeries. I would pass out every.single.time.

I absolutely loved spine and neuro surgery (what are the odds?!). Deep Brain Stimulators truly fascinated me; I thoroughly enjoyed the science behind the surgery and helping Parkinson’s patients. Eventually the hospital I was working at stopped doing DBS surgery (politics of hospitals recruiting surgeons) and I joined the spine team full time.

Everything was going great. I had a boyfriend that I loved (and lived with), I hadn’t felt “weird” in a couple years and I was doing great in my career.

We were in the middle of a particularly long operation and I was circulating (meaning I was the nurse responsible for the patient, the charting, and getting needed supplies for the surgeon and his team). I do not know what happened, only that I was sitting down and apparently the team had repeatedly asked me for something and I was not responding. I was taken to the emergency room. The anesthesiologist that was in the OR with me came down to check on me, and to talk with the ER physician. He said whatever he needed to say and then a neurologist was called to check on me. I went through my first of many EEGs and was scheduled to go to his office for an appointment a few days later. Thus began my temporary Hell for a several months.

This particular neurologist and I did not get along. He could not capture a seizure on the 3 in office 20 minute EEGs I did and therefore dismissed epilepsy as a diagnosis and instead told me I was having chronic migraines. I was put on so many medications. SO many. I would have a seizure in the OR, go to his office (on campus) for an EEG and it would be “not concerning” every time.  Finally, my mother pointed out that “he works for you. If you don’t like him, find someone else”. I found a neurologist that came highly recommended by several surgeons that I worked with. His office was 45 minutes from the hospital I was working at, and because I was never alone (there are always many people in an operating room) I continued working at that particular hospital. They let me sleep it off in a call room after I had a seizure and I would ride home with my then boyfriend, who also worked in that same surgery department.  This happened maybe twice in as many years.

Dr Z was the neurologist that finally got it. Luckily for me he was the third one I saw ( I know that many people go through a lot more before finding one they mesh well with), unluckily for me, after just a few months my insurance no longer allowed for me to see him due to his joining a new hospital and becoming part of a new insurance network. I cannot remember the medication he had me on, but it worked. So he wrote me for enough refills to last a year while I searched for a new neurologist.

The next Neurologist that I worked with was a woman who worked primarily with dementia patients and did not have any interest in all that I had already been through, or the fact that I was on a medication that worked for me. She didn’t like that medication and insisted on switching me to a combination of medications- Maxalt and Topamax. Also stating that I did not suffer from epilepsy but back to the theory that I had chronic migraines. I was committed to making this work- and kept taking this combination of medications despite the nearly crippling side effects. At one point I can recall trying to write a check, in the middle of writing it I forgot how to finish and ended up a crying mess.

In late 2013 my boyfriend and I broke up, and I moved to the inpatient spine floor with the promise of 3 12 hours shifts and straight days- no call. I thought it was going to be awesome, and parts of it were. I had some really amazing patients and loved my work. But I never got enough hours. I was having a hard time making rent because shifts would get canceled due to lack of patients. I decided that at least I would make the most of my time and get my bachelor’s degree online.

My mother had an intervention for me after a visit back home because I was not myself. I was exhausted from the medication side effects, tired of looking for neurologists, and just decided that the medications were worse than the occasional seizure.  I was also young and dumb. All of my seizures came after an aura, so on days that I didn’t feel quite right, I simply wouldn’t drive or go to work. This happened maybe 3 times in the following year. One night while sitting at home alone on my couch listening to music and doing my homework I had a grand Mal seizure.

I woke up on the floor in my living room, having bit the side of my cheek and my laptop lying next to me; broken. It took me a couple days to recover, but I went back to work on my normal scheduled shift. And then I had another seizure in a patient’s room. I do not need to explain to anyone that has epilepsy the pure and utter disappointment, sadness, and hopelessness that I felt. It was time to start looking for a new neurologist.

In the course of about 3 weeks I was recruited through the travel agency that I had worked with by a hospital in a different state, moved there, and began working. I tried looking for a new neurologist (but not really). I wasn’t having seizures regularly, and again felt that the side effects were far worse every single day than an “occasional” seizure. Surprisingly enough, I didn’t have seizures for almost 2 years.