6 months of radio silence...

6 months radio silence...

I had my Laser Ablation Surgery on February 21 2019. Me and my mom woke up early to get to the hospital. 5:45AM is when they would like you to be there, you get into a gown, get “fun” I IV (I’m used to it). I first talk to the neurosurgeon(s), the anesthesiologist, I get marked on my ear on the correct side of my brain that will have the surgery…ablating. This would be my 7th time doing this…at this point I'm not scared of having any surgery. So skip ahead to the OR, I’m relaxed most likely due to some medication, Dr. Spencer does a pre surgery pep talk speech, my favorite. The anesthesiologist said time to go to sleep and I went to sleep.  A really long nap, 13 hour nap. They didn’t finish until 8 pm I was told. 

They told me the week before when I signed the paperwork for the surgery said lots of things might happen, walk..clumsy...I could deal. Me, my sister And My mom all knew the risk Involved. But when I woke up I had complications that we had never thought I could have or would have foreseen. 

Not in a million years. It’s like my brain deleted 50-70% memory. I only recognized a few people: Dr. Spencer (Neurosurgeon), Dr. Chiang(Neurosurgeon), Dr. Farooque(Neurologist), Louise(My Mom), and Spencer(My Dog). It felt like everything else was deleted. Gone. I was so Incredibly sad and Utterly confused. They did tests, with numbers, pictures, I had to draw a clock… And obviously I failed Miserably, which made me more sad and more confused. I didn't understand what was happening to me. 

Eventually I got names of people that I knew are people that came into the room and then I forgot them again oh, but I was trying. My boyfriend's last name is Gibson, like the guitar, no relation. I forgot his name too, I knew I had a boyfriend oh, but I didn't remember his name, it had something to do with the guitar, so I called him guitar guy. Eventually I remembered his name, and I kept saying his name again and again and again. And eventually it stuck. I've been with Chris for eight years now and the fact that I had forgotten his name that tore me to shreds.

I couldn't believe that my brain had done that to me. Nurses and other doctors came in with flashcards and asked me what it was and I knew what the things in the cards were in my brain but I tried talking and nothing would come out or I stuttered.  It was so irritating, I tried again. they came back the next day and the next day. Eventually I got more and more right some were similar were not correct but it was close. I said binoculars instead of glasses. It turns out I had partial aphasia. Do not ask Siri because it's depressing as hell, Google it,  but even then it's still depressing as hell. Anyways eventually I was discharged. 

Me and my mother went to Staples and got flashcards for the ABCs and 123. And we did it again and again and again and again. In the beginning I could only say three cards at most. I could say d for duck an R for ruble(Like Russian currency), and Ruble was not on the card it was a ring. So obviously I had a long way to go. Eventually I got all the cards. I still have trouble with numbers. I still change the she to he in sentences. Obviously I had to re-learn my ABCs so my texting and so forth was horrible so I took a vacation from all of my technology, thank God for emojis I did not know what I'd do without them!

Week after I got out of the hospital they sent me to  Kessler Rehabilitation. I went from 1-4pm, Monday, Wednesday and Friday, it was tiring. I would do three types of therapies. At 4:30pm it’s nap time! 4-5 hour naps, can you blame me? My brain and body were shot. Sometimes I slur (a lot), and by the end of the day I just really don't want to talk because my brain is tired and it just wants to sleep cuz it's been working all day and it's tired. 

On May 6th, I had my first cluster in months. Seizure free for 2-1/2  months. I was walking perfectly and talking pretty well. And that cluster set me back it felt like months. That's when my neurologist, neurosurgeon, me and my mom decided we are going to go to plan B.

I am going to go and have a neuropace implanted in my head. Yes, I know more brain surgery. I can't remember how many brain surgeries I’ve had? I've really lost count. 

Anyway, on July 23rd, 2019 I had the neuropace implanted on the right side of my skull by Dr. Gerard At Yale New Haven Hospital in New Haven Connecticut where I've had all my brain surgeries. I was so scared I would wake up and have partial aphasia once again(might), I would have the pain in my arms which I always have having anesthesia for hours every time does that to me. I know I had to do the surgery we've tried everything else I've tried every other drug this is really my last ditch effort, so I prayed right before I fell asleep. 

7 hours later I woke up from the anesthesia and I started talking. I didn't have any slurring or any problems. I just wouldn't stop talking I was so happy. I was so happy I almost started crying. The only thing is my head hurt but then again I had brain surgery.

_____________________________  

At this time, at least I can walk straight, not look like a drunk which I did right after my surgery in February, talk monetary well most days unless I have a migraine then all bets are off. All in all I think I'm doing pretty well. Today I am still going to Kessler for Speech Therapy twice a week. It’s a huge. I still have trouble by the end of the day but my brain is tired. My brain is tired, worn out. Can you blame is? Four brain surgeries in one year.

Edited by Louise & Sarah Harris


Started My Own WeedTube Channel

It’s exactly what it says in the title. I started a channel on “The WeedTube”. I have a YouTube channel and I have a few video’s up, that is true but what I really want to put up and post would most definitely get me shut down like most people I follow on youtube sadly. So some very wise people came together and created “The WeedTube.” What a genius idea, where people could come and voice their concerns and review though thoughts about anything “medically related” let’s say. There are also many other type of things you can post as well, the world is your oyster. I’m just happy I know have a place I can be me with no persecution.

Check me out.

https://www.theweedtube.com/User/misssarahlouise/

"Shaking In My Boots"

Hey everyone, I don’t know if everyone who reads this post will know this saying. “Shaking in my boots” is another way of saying you’re scared or terrified…and that is how ai feel. I’ve never felt either of those ways at all. Besides my surgery coming up this Thursday, I’ve had 6 other brain surgeries. It’s okay to be scared though. if someone was never scared…honestly I think something was a bit off about that person.

So I am counting down the hours. Me and My Mom are driving up to New Haven tomorrow and having Lunch with good friends. (Connecticut Style Lobster Roll…YUM)

Have a wonderful evening.

Getting A New Doctor & Updating New Jersey Medical Marijuana Patient Card 💜✌️💨

Hello Everyone, for those who did not know I am a New Jersey Medical Marijuana Patient. I use it for my seizures, my agonizing (shut yourself in your bedroom, turn off the lights and not want to be bothered by anyone for any reason) type of migraines, arthritis (even at my age), and depression.

If you’re someone who is apposed to the use of medical marijuana or marijuana in general…then don’t read this post, otherwise I am going to continue*

For the past week or so I have been looking for a new doctor to refill my prescriptions for my card, my doctor who was retired from his practice sadly, I will miss him. I have an appointment in March and in June, let’s home the appointment in March goes well. It’s also the same practice that my doctor retired from so they will already have all my information, so know difficulty having to transfer files. Right?

After hopefully finding the right doctor, I am going to need to change my address on NJMMP Card, since it has my old address on it. Send all my new updated info to https://njmmp.nj.gov/njmmp/. In about a week or more I will receive a new updated card :)

More Seizures, How Wonderful (I Say With Total Sarcasm)

Having seizures up the wazoo and I don’t know I’m having them half the time. These past two month’s, especially last these few weeks have been had. I knew when I started this blog I had memory problems because of the amount of seizures I have and the length I have been having them (since I was 12 1/2 years old) and they are not controlled. It’s taken a toll on my poor brain. It’s slipping a way I feel. I hate feeling like this.

I write down all my seizures that “I know about” in my google calendar and mark them in purple (color for epilepsy) to help me not forget and write any thing specific in the not section, otherwise I won’t forget a few hours later. I may not know I’m having the seizure but after 10-20 min’s I have tale tell signs that something had gone on and I can check my Nest Cams. Yes I have video cameras in my house and they have helped me more times then I can count.

Anyway. I’m just hoping my memory gets better and my seizures lessen. My brain surgery is coming up soon on the 21st of this month, a few days after my anniversary.

1 Month Until My Next Surgery!

Hello Everyone, in one month I will be going back in for more brain surgery, yes, yet again. (My poor little brain but it’s a tough little cookie.)

Basically what will happen is: I will be going in early in the morning for Laser Ablation Surgery. I will be asleep for hours on an MRI machine face down while it bangs away. I will also have more of my head shaved, I am kind of getting use to this, I will have a hole drilled into it, so a laser can sear or ablate that small piece of brain tissue about an inch in diameter, soI was told. We shall see how this goes. It should be able a 6-7 hour surgery, maybe it will be shorter. I will have two of the best brain surgeons at Yale doing my surgery, I’m not worried. Hopefully this surgery will help me, and if it doesn’t have enough affect that we want, I will the Neuropace put in. Always have a plan B.

Let's Be Honest...Seizures Suck!

Hello everyone, the last few month for me have been pretty up and down. Sorry I’ve been a little incognito.

Here is what has been up lately:

  1. I had two brain surgeries(they went well, besides almost two weeks in the hospital).

  2. Seizures up the wazoo. Not shocking, had one yesterday.

  3. Migraines like you can’t even imagine

  4. Some depression. Yes people, “untamed” epilepsy/seizures can be quit depressing.

  5. And on top of that my brother is dying of cancer. (Please keep my brother Michael in your thoughts.)

So life is grand, and I say that with complete and total sarcasm.

I have my next surgery next month. I will be having laser ablation surgery, this is new to me.I will be asleep laying on an MRI table for hours and hours. I have praying I don’t get bed sores from this procedure since apparently I won’t be moved once the entire surgery. I have had one once before after my 3rd surgery 10 years ago, not fun! So cross your fingers everyone!

I just wanted to give everyone an update on what life has been like. I’ve missed you all.

And yes…seizures suck!

"4 Brain Surgeries Down, 3 More To Go"

10 years ago, when I was 17, I had a total of 4 brain surgeries. I had a piece of my brain removed, an abnormal part that was causing nothing but trouble and because of the series of brain surgeries my epilepsy got better, I had less seizures than I had previously been having and the severity of them had minimized.

Yes, I was having seizures but my life was better then it use to be before the surgery and the seizures were controlled to the best of our ability with medication changes here and there.

The past few years though no medication seems to be able to tame them and my memory has slowly been slipping away, so my doctors and I decided that since the medication wasn't going to do it anymore clearly, something else needed to be done...brain surgery.

Never did I think I would be doing that again. And never did I think I would have to go through the entire process but I understand, the brain is an important part of the human body and you don't want to remove the wrong part, nick the wrong area or put an implant in the wrong place. So I agreed and signed  on the dotted line next to the man who made my life easier 10 years ago because he would be doing the surgeries once again. I could never be more thankful. So in 9 days I yet again embark on a journey of a total of 3 brain surgeries and the unknown and for the hope that my life will be better. 
Don't get me wrong - I love my life, and the people who surround me everyday, but having seizures I can't control and not knowing I'm having them takes a toll on the soul and the body. I'm worn out. So I'm taking charge and making a change. 

9 days.

First Brain Procedure Scheduled! (YESSS!)

Got a call from one of my doctor's yesterday regarding the date of my first procedures/brain surgery/testing, whatever you would like to call it. (There will be this one and then a final sometime in January)

It will be on October 30th!

Sadly the day before Halloween, my favorite holiday . But I am happy everything is going as planned!

Wish me luck!

Seizure Update: "Unknowing Rewinding Chapters"

Epilepsy Update: Yesterday I think was my first seizure of the month. (yeah, I say with total sarcasm.) Anyway, I had a seizure last night while listening to an Audible book(an audio book) I have already previously listened to in the past but it is one of my favorite books by Adriana Mather, one of my favorite Authors. One thing that really annoyed me but yet impressed me is I some how managed to rewind & go back 20 chapters or so on my Google Pixel phone while having the seizure obviously without knowing it...Yes, I am that talented. I was extremely confused when I finally went back to listen to my audible book and realized I had already listened those chapters. Eventually I had found where I was at before the seizure had took place and continued on my way in "blissful book listening harmony".  

5 Days At Yale | Almost September (Fall Is Here!)

5 Days At Yale

Hello, I am out and I am safe back at home. I had a nice 5 days at up at Yale New Haven Hospital. The food is still as good as I remember, I know recall that I hate that I'm not allowed to leave my bed without permission because its set to go off via alarm if I set foot off of it, but otherwise I had a good stay. I had 4 seizures, otherwise known as data. Not fun, and very tiring but that is what I was their for and hey i got to drink coffee! The bottom line I got from the end of my visit at the end of my visit at the hospital was that they would be able to do some type of surgery, not sure what type but that there would be some type of improvement in my life when it comes to my seizures. 

Almost September (Fall Is Here!)

There is less then 13 days left of August. Don't get me wrong I love summer but I love Fall and I count September 1st as the beginning of Fall. I mean the weather today in NJ was perfect! Not to cold not hot. I would be dancing around if I wasn't still so sluggish from the hospital still. For me September meals Fall and Fall meals new styles of cooking, fall scented candles, new home decor, new styles of clothing...I fulling embrace fall, can you tell? And September so close i was to share one of my favorite recipes with you. I got it from one of my favorite YouTubers, Kalyn Nicholson. Kalyn got it off the great allergy friendly website theprettybee.com

I am in love with the Vegan Chocolate-Pumpkin Swirl Loaf Cake Recipe in Kalyn's video. It is not a hard recipe to follow, I have made it myself at least a dozen times and a favorite of my boyfriend who has numerous food allergies. I Hope you all enjoy this recipe and others on the pretty bee as much as I do! The next few weeks/months I will post from time to time Recipes/pictures of my creations of other favorite recipes for this fall! 

 

 

Last Lunch Before Getting Admitted & My First Night Back At Yale 

Last Lunch Before Getting Admitted & My First Night Back At Yale 

Being Admitted Into The Hospital in Less Then 13 Hours For My Video EEG! EEEKK!

Good bye walking around freely as I know it and hello nasty glue and wires glued to my head. Yippie! I've done this it feels like a million times but it never gets old. The weird smells, the good food, the quiet if you have a single room, the lights from the hallway, the beeping of heart monitors, so on. I'm use to it by now. And if I'm good I even get pudding so who can complain about that. 

As of the last two nights we have been staying at a friends hour that is quite near the hospital, his wife is actually one of my former neurologists. So I am in good hands. 

I got through all my testing today starting at 8 AM-1PM-ish, then had lunch with mom at the food carts(yum, then went down for a CT Scan but realized they had wanted me to take 50 mg of Benadryl along with the Steroids they had given me to take in hope that I would that have a severe reaction to the Contrast Dye for the Scan, but wouldn't you know it I had some type of reaction. Skin was burning hot and iching, my chest felt like I had rocks sitting on top of it and my through hurt so much like i had been screaming for hours. We decided we are going to add this allergy to my Medical ID bracelet. I then went to another floor after My breathing was normal and had an MRI (I was given 2mg of Clonazopam) So I did pretty well, I'd call myself a trooper but I was kinda doped up from the three doses of Prednisone, 50mg of Benadryl and then on top of that the 2 mg of Clonazopam. I would barley walk or talk and I kind of liked like a drunk person, or someone who just got their wisdom teeth removed and are still pretty loopy, my mom thought it was cute. That was the gist of my day. Tomorrow is another day and I will keep you all updated!

I pray I get some sleep!