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I seem to be on a once a week posting schedule now. Mostly because it’s been one of those times that I’ve needed a break from life. Admittedly, this is mostly because of my seizure abundance. I had one last week while going up a flight of stairs. Luckily I had not gone up very many and the stairs were rubber so mostly I just hurt my knees and my pride. Nonetheless, I still had not healed from my major seizure a few days before. Just when I thought I was getting better, I had 2 really horrific seizures in one day last Wednesday. This was the first time Caty has ever been right there with me during a seizure and I’m certain it traumatized her. I didn’t want her to ever have to experience that. To top it off, I got out of bed a bit after it was over and I passed out and went to the bathroom. I locked the door and I suppose I was going poop though I don’t recall anything about it. I only know that Damion had to bust the door open and I was essentially seizing everywhere and tore up a cabinet and my wall. The glorious moment was when my husband had to get me off of the floor where I was apparently sliding around in my own pee and poo. He had to wipe me, clean me up, get me in clean clothes, and clean my urine and feces from the bathroom floor. That’s exactly what I wanted my husband to think about when thinking of me. Needless to say, I’m no longer allowed to go potty with the door locked.

Often when this happens I go into a pretty deep stage of depression. That’s not part of my life that I really share very much about. I get depressed because I can’t just live a normal life. It upsets me that no matter what we try, there just doesn’t seem to be an answer. I just want my life and my body to be like they “should”, whatever that is. Maybe because I take so many pills to combat depression and anxiety, I have just been feeling numb to emotional hurt. This time it has presented itself in the way of anxiety. That’s not unusual, but I hate that I can’t just go a day where I don’t live in fear.

I should be embarrassed to admit this, but lately I feel little shame. In the last two weeks I have showered TWICE. I think about getting in the shower and I am terrified. I refuse to shower when I am home alone, which isn’t a new fear. But lately I am scared to get in the shower at all. I am beyond disgusting right now but I just can’t convince myself that it will be ok. I am scared to go to sleep at night because I am terrified I will have seizures all night in my sleep, but lack of sleep induces seizures as well so when I do fall asleep I am scared to get up. Being out in public terrifies me. I was taking MARTA places when I needed to but I am horrified to think it may happen in public in a place that I will get seriously injured or where people can’t or won’t help. Caty has been chauffeuring me anywhere I need to go and staying by my side. She starts back to school soon so I’ll have to figure out other solutions. I’m scared to deal with my dad right now because of the stress involved. My short term disability just ended and I have panic attacks thinking about what’s next because of the amount of seizures I was having at work or because of work. I haven’t cooked a meal in I don’t know when because I’m terrified I’ll cut myself or burn myself. It’s gotten bad. I know some of my fears aren’t unreasonable. But I also know that I can’t let this control my life more than it already does. I have to find a middle ground. I do take meds for my anxiety and panic attacks as well… it just hasn’t been effective enough lately to help control this. Or perhaps it has and it would just be so much worse without it?

On another note, I am clearly losing my mind. Like, literally. This used to happen quite a bit because of my medication and it’s still a little bad sometimes. Usually it’s just trying to find my words that I struggle with. I believe that my seizure these last weeks has caused some loss of brain function. It’s not abnormal for that to happen. It usually gets better. An example, one morning last week around 6 am apparently there was a horrible storm. Damion said that there was so much electricity in the sky that it looked like strobe lights. He closed things off as best he could because he said the lights were starting to be a trigger for me. He said we lost power and that I was awake and talking to him for quite awhile. He said I got up a few hours later and let the dogs out. I went back to bed and woke up around 1 pm. I didn’t feel right at all and I don’t remember any of those things happening this morning. It has been happening more and more frequently. I’m sure that with all this head smashing I have probably experienced a concussion or two and it’s common for frequent seizures to begin to demolish brain cells. I really hate to think of all the ways this is destroying my body and my well being.

Caty has been working on designing my logo for my small biz. There’s an updated version that I’m going to get trademarked. I thought I’d share the draft though. I’ve been selling about 4-5 bands per week without even trying between Etsy and Amazon. That really amounts to nothing but I get crazy excited when I get a notification that we’ve sold one! Hopefully soon I’ll start feeling a little better and I can focus a bit more energy on building Epilepsy Life up! Can’t wait to share some more updates soon ☺️

VNS 2 Month Anniversary

Three days from now will officially my mark 2 month anniversary of my VNS implant. That means I’ve had it turned on for 6 weeks and had it adjusted three times since. I have two big and not so beautiful keloid scars to remind me of this journey I’ve been on. I have this bizarre giant bruise on my chest that I hope isn’t permanent. And I have serious hope that this thing is going to work. A lot of people ask me how it’s working. I will have no idea for many more months because it’s not even remotely set to therapeutic levels yet. But I’m hanging on the the hope that one day I can celebrate being seizure free.

For anyone out there considering this surgery… or for anyone else wondering what this is like… here are my experiences so far broken down by the good and the bad.

The Good

• Healing time was considerably fast. The pain was manageable and the incisions closed fast. I mean… I did have my throat and my chest sliced open. Of course it sucked, but I really imagined that it would be worse.
• Outpatient surgery! I was in the hospital at 6 am and outta there 12 hours later. I really don’t dig hospitals so I was happy to have a short stay!
• People are always really fascinated to hear about this cool device in my body, and I’m always so excited to spread the word! I really wish I had known about this years ago and I think that there isn’t enough knowledge out there about it.
• You get special treatment through security lines. As soon as you tell them you have a magnet implanted in your body and show them your fancy medical card you get rushed through the line like a true VIP. They NEVER know exactly what it is that you have in there, but they know they don’t want to mess with it either way!
• I have something to believe in again… some kind of hope that things are going to get better. I haven’t had that kind of hope in a long time.

The Bad

• I scar easily and it’s not pretty. I could tell immediately that the incision on my neck was going to form a keloid. I could feel the tissue hardening as soon as the bandages came off. The one on my chest was looking really good at first and then it’s like it just stopped healing.
• Where the magnet is implanted in my chest I have begun getting this really intense bruise on my skin. At first I thought it was just part of the healing. Now I can not help but wonder if when I use my magnet over the device if the strength of the magnets together are causing this bruise. If so, I suppose I’ll just have it for life. My neurologist told me she had not ever really seen that happen to anyone, but I’m accustomed to being an anomaly.

• My VNS also has a heart rate sensor. Since your heart rate either dramatically increases or decreases during a seizure (depending on the type) then it automatically begins going off upon detection of a spike in heart rate. So this means that if you are exercising or doing anything causing a spike in your heart rate that it shoots the impulses and doesn’t really stop until you either manually stop it by holding your magnet over it or your heart rate goes down. Damion says he always knows when I’m mad because my voice starts changing a lot.
• As for the voice thing… it happens. It sort of sounds like talking through a fan when it goes off and your throat clenches up so you get short of breath when talking or doing anything. If I’m on the phone and talking to someone when it happens they’ll start to say “I can’t hear you… you’re breaking up”.
• It takes a LOT OF PATIENCE! This isn’t a miracle cure. It doesn’t work for everyone. After the surgery there’s a long way to go before getting the settings right and then it’s no guarantee you can come off of meds. You become besties with your doctors office if you weren’t already because you have to go in every two weeks for quite some time to get it adjusted. Every time it gets adjusted and gets stronger your throat hurts for days and it can be a little painful. You just have to be strong and be patient and know that it’s all for a good cause.

Even the “bad” isn’t actually so bad. Scarring and bruising? Yeah, that’s kind of been my life since I’ve been having the tonic clonic seizures so frequently. What’s a few more??? My dermatologist did give me a prescription for this badass gel, Recedo, to put on my scars. I just started using it this last week so we will see how it works!

The whole voice and breath thing… luckily for have learned how to use my magnet to my advantage. The wrist magnet can be swiped across your chest to make it send a signal if you need it to, like if you can sense a seizure onset or during a seizure a witness to the seizure can swipe it over to potentially stop or slow down the seizure. But… if you just hold the magnet there for an extended time it will temporarily turn your VNS off. I try to use mine accordingly so if I start running out of breath or if I’m talking to someone and it begins going off and becomes troublesome, I just use my wrist magnet to control it!

The wrist band that comes with the magnet is pretty boring so I started making my own. I then decided to open a little Etsy shop and sell on Amazon with the hope of helping others. I’ve sold a few bands so far. I’m not really making money on them but it makes me feel good to know I may make someone else happy with something simple. Caty and I make them in our own little workshop upstairs. It gives us our own special time together too.

These are the bands I am selling on Amazon. Lots of great prints and patterns! Makes wearing that chunky magnet more fun!

My Little Amazon Shop

Insurance Companies: My Love/Hate Relationship

Today I’m feeling a little more than frustrated with insurance companies. There are certainly positive things about insurance that we often take for granted. For instance, I just had a $72,000 surgery and not once did I have to make an insurance dispute and I wasn’t stuck indebted because I had to come up with that money to pay. My insurance took care of it and the process was beyond seamless. For those times I am incredibly grateful.

Today, however is not a day that I feel so grateful as much as really frustrated. I mentioned in a previous post that I haven’t worked since last July because I have been on a medical leave of absence. I had endured 6 Tonic Clonic seizures within a month and was having Myoclonic and Absence seizures all throughout the days. My Myoclonic seizures were going on constantly through the day and I was having hundreds of Absence seizures per day. I would say most if not all of these were due to extreme stress and lack of sleep. I lived with constant anxiety that another Tonic clonic was going to happen again only the next time I wouldn’t wake up. I was terrified that I was going to lose my job because I knew that my seizures were impacting my ability to do my job. One night after working an overnight shift and getting almost no sleep and while I was getting ready for work a few hours later I had a terrible seizure causing severe damage to my body. It was then that I called and filed for short term disability.

My body needed rest. It could no longer run on fumes and be expected to operate as normal. We needed to figure out a different mix of medications to control my seizures. I just finally admitted that I couldn’t do it anymore. I felt bad for the strain that I put on others at my job. I felt guilty for taking time for my body to heal. I felt judged because the things that I experienced everyday often went unnoticed until I fell out on the floor and then it became cause for concern. It’s difficult for others to understand.

After I went on short term disability my seizures and my pain levels got worse. My body rejected new medications and I experienced horrible side effects. My anxiety was out of control and I began experiencing extreme depression. The insurance company would approve my claim for six weeks at a time or less because they were not understanding the things I was going through. I had to appeal their decision to continue the coverage several times. Every time I would try to go back to work I would experience a TC seizure worse than the time before. Every time I would talk to my doctor about going back to work I would experience panic attacks, paralyzed by the fear. It’s so hard to explain how something like that feels. I became so alienated from people at work. Perhaps that was partially my fault, but I also felt that they didn’t understand why I wasn’t coming back to work.

But on with the insurance company… every single time they request information from my doctor they basically get the same information. Then they send it for medical evaluation. Then they have a neurologist contact my neurologist where they finally understand what’s going on. In the meantime I am not being paid. This generally takes about 4 weeks to get resolved and I finally get reimbursed but then about two weeks later I experience the whole shenanigans again. It is beyond frustrating. They bounce me around with different claims representatives constantly so that I never know who to contact. This last time that my doctor sent in information she made them aware of my surgery and recovery time. That was sent on a Monday and my surgery was Friday. They approved my claim for 2 days (random) and then wanted information from the surgeon. This man, mind you, is someone who is not at all my primary neurologist but a doctor that I would never see again if all went well. The representative called me two hours after my surgery to let me know he couldn’t get in touch with THE SURGEON and to let me know my claim could be denied. Seriously? This man is paid to cut open brains and all other things neurological. Not to sit on the phone with an insurance company. After they agreed to speak with a nurse in the office they finally approved my claim… for two weeks since that was my appointment to just have the device turned on.

“There are worse things in life than death. Have you ever spent an evening with an insurance agent?” – Woody Allen

My doctor is still not releasing me since I am still having so many seizures and my VNS will not produce results for awhile. I also just started ANOTHER new medication which I am experiencing nasty side effects from. I had the insurance company fax over extension paperwork a week ago. Doc office didn’t get it. I called Monday and asked them to send it again. They allegedly sent it. Doc office office still didn’t get it. I asked them to email it to me. They wouldn’t. I asked to speak to my claim rep. He’s unavailable. Finally they agreed to fax again but also email directly to my doctor. Doc office still didn’t get either fax nor email. I called AGAIN today and they said they would put in a REQUEST to send again which could take 2-3 business days. They then reminded me that my paperwork is due Monday. WTF?!? I am yet again not being paid. I am yet again battling insurance. I will likely have to appeal and go through that process. I feel so stressed and tired of dealing with all of this. I feel certain that because I have an appointment every two weeks from now until we get this therapeutic levels where they legit put a wand next to my device, set it, and I’m done that we will probably have to to through this EVERY two weeks. I wish all this could just be normal and I could go back to work. 😩

Post-Op Follow Up and Other Fun Things

Today I had my post-op appointment to check the progress of my healing and my newly placed VNS. With traffic the hospital is about an hour away from my house so I really only like to make that trek if the appointment is productive. The last time I saw this NP for my pre-op appointment I was not impressed. I didn’t care for her bedside manner and she made me feel like I was a burden to her time. She also gave me a LOT of misinformation about my surgery and my healing process which went against everything my surgeon told me as well as everything I had read. Today during my appointment she was more worthless than the first time I saw her. She didn’t even look at my incisions. She came in and asked me if I had any fevers since the surgery, didn’t look at my surgical sites at all, and then said “ok you’re good to go. We will see you in 7-9 years when it’s time to change your battery”. I had a few questions for her regarding the scar on my neck as it has a few large lumps in it. She brushed off my questions and went on with her day. I spent more time in the waiting room than in my appointment. But the good news is that my wounds look so much better after only 2 1/2 weeks!

I have another appointment next week to get it adjusted again to the .5 setting. I’m interested to see the difference in how the device feels when it goes off.

I had a seizure yesterday. I don’t at all expect that my VNS will help control them for quite some time. I woke up feeling really tired and worn down. I assumed that it was from traveling. I slept for most of the day but it happened in my sleep. That’s not really unusual for my seizures. I just really hate when it happens because I feel horrible for the remainder of the day. I did feel fine this morning though.

I didn’t mention in my last few posts that our car got hit on Sunday. It really wasn’t that bad… more annoying than anything. A lady was pulling out of a parking space and we were right behind her. She didn’t look so she smashed right into the car. The passenger door won’t open and there is quite a bit of structural damage to the passenger side. Everybody was ok except I realized later that the seatbelt pushed into my incision areas and made them agitated. It’s really just a pain to deal with at this point.

I just went to the grocery store to stock my fridge and pantry with Keto friendly foods. I was planning to start back yesterday but after my seizure my daughter convinced me that Golden Oreos and Chips would make me feel better. I gave in to peer pressure. I will probably cook a non Keto dinner for my family tonight and tomorrow I will continue to get carbs out of my house and make meal plans. Then we will get back on the train on Friday. I’m really excited. It does take a lot of planning but I know it will help me in so many ways.

When I started the Keto way of eating the first time I was so overwhelmed by finding recipes that my family would want to eat. Here are a few resources and cookbooks that I found that were SUPER helpful!

Keto for Beginners… and it’s less than $7 on Amazon!

Crockpot Recipes for those Slow Cooker and Instant Pot lovers!

Cookbook for those on the go. Recipes with only 5 ingredients!

500 great Keto Recipes

Fat Bombs are Seriously THE BOMB. Recipes for great variety for these snacks to help get your fat intake up.

How it feels to TURN ME ON

Today was the magical day!  I got my Vagus Nerve Stimulator turned on.  Wait…. that title… of course I was referring to my VNS.  Get your mind out of the gutter!

I was really excited, and a little bit nervous, for my appointment.  I did a ton of research prior to getting my VNS and I knew about all of the possibilities when it was turned on.  I knew about the many things that people reported, but it’s not the same for everyone.  Even though I knew that it would likely impact my voice, I had no idea how it would actually feel or what the impact would be.

 

We went in for my appointment, and it was probably the fastest Doctor’s appointment I’ve ever had.  And for once I didn’t leave in tears!  Programming the device is so easy.  They simply just put a wand over your chest and then once the wand detects the device they can then use a program on an iPad to set the timing and frequency of the device.  That took like 30 seconds.  The longest part of the appointment was when we made small talk long enough for the device to go off 3 times to ensure I was going to be ok with it.  Mine is set currently at a really low entry level.  It goes off every 5 minutes for 30 seconds at a .25 frequency.  We will increase the levels and the increments every two weeks until we find a therapeutic level.

So how does it feel?  Really weird mostly.  When we were in the office I actually could barely tell the times that it went off.  My throat has been feeling rather swollen from the surgery and mostly I just felt tightening or pressure in my throat.  When we left and got in the car, I got out my magnet to make sure that it was working.  The magnet is what you swipe across your chest if you feel a seizure coming on or someone else can swipe it across if you are having a seizure and it will trigger the device to go off.  As soon as I swiped it across I must have had a look of sheer terror in my eyes because Damion and Caty looked really freaked out.  I was a little freaked out because as soon as I swiped it my whole throat began to close in.  I don’t actually think that I attempted to speak at that time as I was just too spooked.  After about 30 seconds the rope around my throat let go and I saw that everything was ok.  When I got home I did it again except that time I knew what to expect.  When I tried to speak during the “event” nothing would really come out. If I tried to speak even louder there was a tickle in my throat and my voice did this tiny little vibrato thing.  I wouldn’t call it raspy, I wouldn’t call it hoarse… I think I would just call it weird.

I look forward to seeing how this does.  It is certainly manageable right now as I can barely feel when it goes off when not provoked by the magnet.  Ideally we would like to get it to around 2.5-3 at 3 minute intervals for 1 minute each.  That can take quite awhile to get there.  I’m fine taking baby steps for something that could potentially change my life as I currently know it.

 For those wondering how I am healing, it is definitely getting much better!  The incision on my neck is understandably still quite swollen and isn’t healing as well as the one on my chest.  I am happy with the progress, however.  I looks WAY better than it did two weeks ago.  It feels actually like it’s been much longer than two weeks since I had my surgery!  I was really worried about scarring, so I’ve been doing my part to try to prevent them as much as I can.  A few things that have worked well for me….

COCONUT OIL!!! I use Coconut Oil for my skin, hair, and cooking. It worked wonders to help me get all the surgical glue off of my body and keeps my skin nourished so it can heal.

I love these SCAR AWAY SHEETS. I’ve used these quite a bit on other scars in the past too from skin cancer removal and they are great.

MEDERMA PM. I’ve used Mederma before as well and was quite pleased. I bought this PM version this time and it has been working well.

And finally, I haven’t tried this SCAR GEL but I have gotten some great recommendations from people who battle keloids. It’s in my Amazon wish list JUST IN CASE!

What Could You Buy For $71,000?

• Attend Harvard for one year (tuition, room and board, and an occasional night out in Boston)

• Buy a Tesla Model S

• Stay in a private, luxury villa in the countryside of South France for a week
• Head to Vegas and party like a rock star at the Palms Villa Resort and hope you’re a good gambler!

• Buy 2-3 kilos of Cocaine (I wouldn’t personally recommend this option)

• Build a tiny house in California

• Go on a 65 night all inclusive cruise for two traveling from Miami to Sydney with unlimited excursions

OR

• You could get in one of those awesome hospital gowns where your butt is exposed, spend 10 hours at the hospital where all you can eat is ice chips, get knocked out with anesthesia, and have a surgical device implanted in your body! BONUS: you get to leave with 2 giant incisions and just pray this procedure works!

I chose the last option. Some of those others would have been much more fun!

This patch is pretty awesome and only $4 on Amazon!

VNS Surgery… the good, the bad, and the real ugly

I went in for my VNS Surgery yesterday and wanted to share my experiences. It was an outpatient surgery. We got there at 7 am and we were going home at 5 pm. The surgery itself didn’t take that long… that was all surgery prep, anesthesia, and then recovery from the anesthesia. The surgery itself was about an hour and a half. I had no complications with the surgery so overall I’d say that was a win! Anyone in or around Atlanta considering this surgery… I strongly recommend a Emory University Hospital. My epileptologist is so incredible and is part of the Emory Brain Center. The Neuroscience clinic was nothing short of fantastic and the hospital is wonderful.

It took me almost 3 hours to come out of the anesthesia and even after I was really out of it and in crazy pain for about an hour before they would let me go home. They gave me morphine in the recovery to help with that. Coming out of the surgery felt a LOT like the postictal state after a TC seizure. I was still pretty out of it coming home but started to regain full consciousness around 7 pm. They sent me home with three prescriptions… Percocet, something for nausea, and a stool softener because I guess the anesthesia makes you constipated? I filled only the Percocet last night and figured we would leave the others as needed. The Percocet was definitely needed ASAP!

I did a LOT of research for months going into my surgery so I feel like I was pretty prepared about what to expect afterword. Mostly I was on point. I was pretty terrified at the thought of my neck being sliced but I am a little surprised that it is the least painful area on my body. My chest hurts like a mofo. No morphine or Percocet has made that numb to the pain but I’m just glad I’m not experiencing how it would feel otherwise. I’m guessing that’s because that’s where the actual implant is. That site hurts a lot and is beginning to bruise really bad all around the incision. As for my neck, I just look like Frankenstein. The incision spot itself doesn’t really hurt but I can’t turn my head left or right very well and my throat is swollen and sore. That’s probably more because of the anesthesia tube put down there. My voice is hoarse but I expected that from the tube and because they sliced right by my vocal chords to get to the Vagus Nerve. It hurts to swallow so I had a Frosty and a Milkshake last night since I could just slide those down my throat. I should probably feel hungry and should try to get something in my stomach since I haven’t eaten since Thursday night but the thought of anything going down my throat seems painful. I’m also not hungry at all.

The good? I’m glad it went well with no complications. I’m glad that even though it hurts, it doesn’t feel miserable. But I am REALLY glad that I have people who love me and support me. Caty hasn’t left my side. She painted my nails today and we have been watching movies together and being so loving. That warms my heart. The ugly? Well… just look at the pic above. I think having slices like that makes me look kinda like a badass though, right? 😂

“You may not always have a comfortable life and you may not always be able to solve all the world’s problems at once but don’t ever underestimate the importance you have because history has shown us that courage can be contagious and hope can take on a life of its own.” -Michelle Obama