Epi What?

MyID Sport Med Bracelet

Reminderband

Here is the Link for the Children Conditions the Epidiolex is expected to help

FDA Epidiolex

Epidiolex vs CBD oil

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Thank you...Epilepsy

AND HERE'S YOUR HOST!!! THE ONE THE ONLY!!!

GAAAAABRIELLA!!!

That would be pretty awesome. So I love Jimmy Fallon and love Friday night "Thank You" notes. 

So here are my Thursday thank yous 

I 💖 Jimmy Fallon!!

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A World Of Purple

Etsy Epilepsy Awareness

Support Store-Epilepsy

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Thank You For Being A Friend

Not Just My Friend, My Bestest Friend Jess

Me and Jess, Dorothy and Blanche...Same Thing

Epidiolex

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Who Are You??

Alice in Wonderland is one of my favorite Disney movies.
Not to mention you learn how to smoke hookah at an early age.

Next Question Please

Final Question

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DBS on PBS

I apologize again for being boring and absent from blogging lately. I've been meaning to get to this one since the documentary The Mayo Clinic: Faith. Hope. Science. Ya, it aired in September, sooooooooo I'm a bit, okay a lot behind.

             Okay here are the links as promised, I think you will be amazed      

The Violinist:

Violinist

The Mayo Clinic DBS Info:

Mayo Clinic DBS

If you want to see where Mayo Clinics are:

Appointments

If you are so interested you want to buy the dvd:

Mayo Clinic DVD

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Trick or Treat Time For A Seize!

What an adorable cave child with modern technology

HERE WE GO!

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Miss Me Much?

That's my friend Caylan!

YESSSSSSS!!!

Oh fine, I'll let you have a taste!

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Catch My Breath

From the time I left the hospital in July until today, I have had straight up anxiety and panic attacks. Why you ask? Well I had no idea what would happen at my appointments. I did all this research on the DBS and just prayed to Nana and Grandpa, please let me be able to get it.

My appointment yesterday was with Dr. Constantino; today it was with my surgeon Dr. House. I've also been extremely emotional, if you couldn't tell from my last rant. So, I've been struggling, and yesterday I was pretty numb and empty.

I was planning for the worse case scenario, that I wouldn't be a candidate for the DBS. We didn't get to discuss that very much because it's so new with the FDA and manufactures of the device for epilepsy instead of Parkinsons. That's what it's been used for.

So, we discussed increasing my Aptiom, and among other things; I need to look at therapy. In a bad way. I've known that for a while but it's a must right now. I have had so many things thrown at me just before going into the hospital, and then after. That's a whole different post. I have an appointment scheduled already in October. Hopefully before then if someone would cancel theirs.

It's not anything to be ashamed of. I need a third party, no relation, to be able to get out all of my feelings and express what's going on aside from the seizure stuff. I studied psychology and sociology in college, those were my main courses and I just disregard them. Simply because I'm that hopeless romantic. I'd like to catch my breath from all of this shit. Yes, just like Kelly Clarkson's song. It's fabulous.

So my appointment with Dr. House made me feel a bit more hopeful. First, he was able to show me the X-Ray of my skull with the electrodes drilled in. It was quite impressive and pretty cool. I'm going to try getting copies so you all can see as well as the video of my seizure. I know we all want to see it!

Next, we discussed the DBS. I'll be honest, I was terrified, and the anxiety was creeping in. I asked the question, "Am I a good candidate?" One miracle at a time I suppose, but I'll take it! He said it wasn't an unreasonable option for me. He warned me that it is possible that I didn't respond well to the VNS, I may not respond well to the DBS. From what I've researched, and also what Dr. House had said, many people see improvements with the multi-focal that did not improve from the VNS.

I really don't have anything to lose at this point. The VNS made everything worse, my meds aren't completely reliable. I've been through way more pills that didn't work than the requirements to receive this kind of treatment. I'm going big or going home. I didn't go through all of these studies, tests, surgeries, and the other shit just to stop. Put that thing in my head!

The best part of the appointment: my case should be presented to the surgical board around next month. That makes for a great birthday present! However, because the device has to be made, approved, blah blah blah, the earliest that I would have the surgery would be in December. Merry Christmas! Overall, I was able to leave that office smiling and able to breath a bit better!

Ciao for now!

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Black And White

I apologize that I have been gone for more than a minute, and that this post will not be a long one. This has been a very difficult time for me. However, I went to a movie tonight with my siblings and my mom. We saw Blackkklan, a very excellent movie. The premise was based on a true story that focused on race, discrimination, police brutality, and the KKK.

There are so many scenes that will humble you; it humbled me. During one of those, a thought hit me. For whatever reason, I thought of epilepsy. It does not discriminate. It does not care how old you are. It could care less about your race. Your gender doesn't matter. Your class is completely irrelevant. Overall, your demographic might as well just be dog shit.

In my opinion, that's okay. What's not okay? The effects that it has on your life. The way it messes so much with your head, the way it just takes and takes, and what it does to your relationships. The ones you love the most, the person you planned a life with. Then, watching it break and crumble; you never saw it coming. Then something happens to your soul. It just becomes empty.

That bitch is always there. The one who is jealous of the relationship you have. So, she decides to make life very difficult on you. She creates a test, one you have all odds against you. You fight back with all your might, and you love with all of your heart. Sometimes, love does not conquer all. All I'm able to do is pray for a miracle. Those miracles haven't been around much. I just hope this one will. (No comments on this one Mom, please).

I see Dr. Constantino on Tuesday, and plan to update you all with whatever news I am given.

Ciao for now

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You're A Shining Star

My cousin Larry is the one flying in from the left. Or diving?

Yes Larry, my blog title this evening is of the songs you wrote. Um turns out that September was not written for me or Alyssa, so the argument is over. However, I can have a dedication without her knowing. Jokes aside, I had another inspirational moment after talking to my cousins Larry and Louisa. 

I have quite a few pictures with them. I just need to get them uploaded, they're currently an hour and a half away. For the clarification, Larry is my cousin from my Nana's side. Yes, it is possible that an Italian-African American can be produced. Holy shit, I can't count how many times I was asked how and the comment of, "But you're white...." Technically, fine. But believe it or not his mom,(Nana's sister) married a black man. Mind blown I know. There, we were able to get our genetic course out of the way.

His wife Louisa is just beautiful! They've been married for many years and are spiritually uplifting. I didn't go to church today, but when they give me a call to check on me, I go to church! With everything that's been going; I most certainly need it.  

The pictures below, were the first autographed photos I received from them when I was 15. Then I was able to meet them.

 

I know she's a total dish! Plus it's so cute that both their names start with an 'L'! They are both so in love and it is a beautiful thing.

Louisa's birthday is tomorrow so everyone say happy birthday!!! A few years ago Stevie Wonder did a little performance for her! I know! Freakin' awesome!! I'm just happy if someone tells me happy birthday! I think I talked Larry into singing September for me! No pressure now Larry!

Back to church. I know, this is a new thing for my blog.  

They have been praying for me and have let me talk about some of my issues aside from the epilepsy stuff. They said this wonderful quote of their own that made me think of The Notebook. As Noah is having his check up he says, "Science only goes so far, then comes God." 

They reminded me that doctors are wonderful, but with the Almighty, all things are possible. Also, something I haven't thought about doing nor had thought of period. Down the genetic line somewhere, there was a curse put on this family string.

Not relevant, but I did tell him to tell Jimmy hello from me
hoping that would lead to something magical!

Don't know why, don't know where. So they both gave me some instructions of how I could ask God to forgive that family member, whomever they may have been, and repent for them. The outcome being that this could help the whole epilepsy thing for myself, and stop this condition from going further in the generations that follow.

I did this tonight. It's not that I am just looking for some assistance, but if I can help make a difference in the younger kids in this family and kids to be, you bet your ass I will. Not to mention, if we effed up down the line in a big way, I really am sorry!

During our spiritual discussion this evening, I was able to vent about some things. What's amazing is that they remind me of all the good qualities I have that I've forgotten about. I have let myself go, and I think they see far more potential in me that I thought I was ever able to think of doing. They're the people that everyone could use in their life. I just got lucky. 

Thank you both, and I did listen. I even did what you guys said to do with juice and a cracker. Peace and love to both of you. Peace to all of you tonight. 

By the way, if you're in the California region, I hope some rain is on the way! If you need to have a wonderful evening out, Larry and Louisa will be having a grand event that I wish I could attend. 

I will get the link, or at least the information again because I'm forgetful. I do know it's in October of this year. I'll add it here tomorrow. 

Until then, Ciao for now!

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1..2..Pick A Few. Or Try 10

I've been waiting for inspirational writing for a new post. It's not my best but it will have to do, mostly since I've been in a continuous pissed off mood. I did leave the hospital with another add on medication. Side effects may include mood swings. If there weren't other major factors pissing me off, I'd have a better time knowing if it's the stupid shit or the pill. Maybe, it's both. Who the EFF knows.

Today was an exciting day. I got my staples out. I was expecting the staple remover you have at home. Nah. It was more like a nail clipper. It had it's own fancy box which made me nervous. Then...out came this contraption!

First thing I thought, HOLY SHIT! This is gonna hurt like a Bitch! I also didn't know how deep the staples were so I was planning for the worse. There is some scabbing that's worked it's way around where the staples have sat. That's a good thing though. So I was told. I braced myself. The anticipation was killing me!! How bad was this going to hurt????

 

OOOOOO Damn! No it didn't really hurt. It was a good pinch. The front two and the middle back were the most tender. I toughened up once I saw how short into my head they actually were. The crusty blood on my skull is more painful. So...snip, snip, snip, plus seven more and it was all over. 

If they hadn't hurt while they were in, I'd say they're rather cute. I can't wait to shampoo and condition ALL of my hair now! Until next time, Ciao for now!

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On A Scale Of 1 To 10

This measurement system can certainly work towards many aspects of life currently. In the picture up there getting ready to leave the hospital: that was a super 10 to get the hell out of there. I won't lie as usual, I'm not in the best mood.

On a scale of 1-10, how productive to I feel my visit was? I need to go with a big 10! Not only did we find out exactly how complicated my brain and seizures are, but these "auras" that seemed to be reading on the EEG, are in fact absence seizures. So, I'm not crazy.

On a scale of 1-10, how disappointed am I in my brain? An 11 at least. I was looking forward to having an RNS put in by the end of my visit. It just wasn't meant to be. The DBS is literally my only hope left. If my brain is this complicated, you would think it could apply that to different areas.

On a scale of 1-10, how broken is my heart? Can we go with a solid 20??? Most of this is outside of the hospital. Of course the news was heartbreaking. I haven't cried. Not since I left home to get in that hospital and not since I left the hospital. But mostly, a lack of giving a shit by someone. A specific someone, doesn't.

On a scale of 1-10, how grateful am I for everyone who has given a shit? 100. The ones who have called me, text me, prayed for me, have read these, came to see me, and plan to see me. That would be not him. Oh sorry, that was him and then he found out I made it out alive from the first surgery.

On a scale of 1-10, how much do I appreciate Dr. Constantino, for not giving up on me yet? Infinite.

On a scale of 1-10, how much pain do I have after the surgery? 10! 10! 10! That changes after Oxy or IB Prophen 800. Lots of ice too.

I've been playing Sims 4 since I got to my folks. So since the 17th. I can't go home until the 30th. So that's a lot of time to get to play the game. I might as well be able to try gaining control of someone's lives. It's way more fun than real life.

Like I said....Not in a good mood. Thank you for listening to my rant today.

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I'm More Than Unique

I was waiting for some news to be able to update with. I hope you weren't on the edge of your seat for too long. Let's start with the good. The rods are out of my brain and so is my VNS! YAY!!!!! Yes, it hurts. My head doesn't, just my neck and my chest. I have GREAT muscle tissue where that God forsaken device has sat, useless, for the last three years. Plus, I get to leave tomorrow or Wednesday. I lived!! There's the good news.



Not so good news: based on the information from the invasive EEG, I cannot receive the RNS. Let me tell you why.

I am an epilepsy study dream. My epilepsy is in it's own category, as far as we know. Dr. Constantino does not have and never has had someone like me. I've gone way outside the box! I haven't been able to find another case like mine either. I AM UNIQUE!

Enough bragging.

During my tonic clonic the other day, Dr. Constantino was able to see that both of my frontal lobes are active and it spreads rapidly. Not very unique I know. What makes it unique is that I have small seizures during my tonic clonics. They are just few seconds long. They also act independently from different areas of my frontal lobes. I AM MORE THAN UNIQUE!!! Those mini seizures during my tonic clonics are what ruled me out as a candidate. It's rather interesting and cool, but at the same time it's highly disappointing.

Don't worry though, Dr. Constantino isn't a quitter. She loves a challenge. What she and Dr. House will do is present my unusual case to the Epilepsy Board to request the Deep Brain Stimulation (DBS) Implant to be used to treat my epilepsy. That's not it's use in the U.S. It is currently used for Parkinson's Disease. It is used for epilepsy in the U.K. Hey guys!!! (The Trump baby balloon was FABULOUS!!!) Most sincere apologies for the visit from Hell.

If approved, I would be the first to receive the DBS to treat epilepsy in the U. S. of A that isn't from a clinical study (until I find out otherwise). That is most certainly damn cool.

verywellhealth.com

There's two ways I could leave this hospital. Poppy or Branch? Well, because of the "cool factor" I'm going to just add A LITTLE Poppy to my Branch. We haven't reached the Boyz II Men End of the Road. If my seizures all started at the same, then I'd be EFFED! However, since they all have their own little focal spots, my case gets to be argued. That still gives me a spec of light. 

I just want to know I've exhausted all options. ALL OPTIONS. Like I've said before, I've come this far for a reason, and it's not to say "Oh shoot-darn, better luck next time." WHAT NEXT TIME??? Which is exactly why I will just take this X-MEN mutant info about my brain and wait for a grand birthday present. You guys get to wait with me which makes it even more awesome! So hang tight and Ciao for now!

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To The Center Of The Earth

Hello World!! Yesterday was day one and here's a recap!

That's me before I go into surgery!

They took me into the operating room to place these:

In those slots below....to the center of the Earth in my brain!

On the outside they look like this:

There are 147 lines that show my brain waves now of my right and left frontal lobes and it looks like this:

And while on Morphine I did this! My poor nurse.

After throwing up twice and getting my new batch of Morphine, this is how I tell DeDe goodnight

 (I call her husband Wonka).

And now it is time for me to do this:

Stay tuned!! Ciao!

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Can I Get An Amen!!

Just one more day!

There was a lot of Amen's yesterday and I haven't felt at such peace for a while. It was great to have my family with me yesterday and if I can get some pictures from family members I will post them in here!

Thank you for getting to this point in the journey, let's get ready for good news! I've been blessed 10 ways to Sunday, so I'm much more confident!

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Up In Smoke

This week has been taxing to say the least. There's been so many emotions and so many bad days in such a short amount of time I can't even wrap my head around it. There hasn't been time to actually focus on what is coming up. When I took this picture I thought it was so cool and I was so happy and proud that I was able to capture it. I look at it now, I still see it as beautiful and haunting. The haunting is what I see more right now.

If the last few days could be best represented by a picture, well that would be it. Completely up in smoke.

This isn't going to be a long post, just enough to get out some of what I've been feeling the last few days. There's so many things I wish I could have done differently. I can feel the weight on my chest and I don't know just how strong I can still be. I don't have the same strength as my mom.

I found this quote, and I was surprised by who said it.

"I know

God will not give

 me anything 

I can't 

handle. 

I just wish 

that He 

didn't trust me 

so much."

-Mother Teresa

Ya, a SAINT said that. Blew my damn mind. I thought of this quote all day because, it was a train wreck. 

This journey has made me see some very dark parts of myself. I've doubted the person I was, and especially the person I have become. I don't think I would say that I'm lost, but damn it I don't think I've ever been sure of who I have ever been. I saw this quote today. It was everything I had been thinking the last three days and today. 

"They say: be true to yourself 

and nothing will go wrong,

but sometimes I wonder,

how can you be true to yourself

when you don't know 

who you are anymore?"

  

-GF

Until tomorrow, Ciao 

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SU WHAT??!!

My mom hasn't seen me have a CRY CRY in a long time. I mean a LONG ass time. So I'm sure she'll be bawling as mom's do when they're child cries. As DeDe says, it's an ugly cry. Sometimes we need an ugly cry. So it's okay DeDe if you have an ugly cry 😄

Here are the links I promised:

Danny Did Founders

Meet Danny

Danny Did SUDEP Awareness

NY Times SUDEP

Epilepsy Foundation Learn SUDEP Early

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Where There's A Will, There's A Way

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Side Effects May Include...

"You have to lose your mind to keep your mind."

-ME 

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This Brain

This is the look of pain inside this brain. Bam! Shakespeare!

But this is a better look than how it really feels.

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Instructions Attached

I've been watching way too many of America's Next Top Model re-runs lately. See how I make sure to elongate my neck Tyra??

No mom I'm still not Poppy. If you've seen the kids movie Trolls my mom is the living version of Poppy. Spunky, happy, overly optimistic. Plus her favorite color is PINK! One of my mom's co-workers wants my mom to teach her how to be Poppy. I told my mom that she can't cause my mom is the only Poppy there can be. *Tender Moment!*

There's my mom just floating through a rainbow land of positivity. When she wants me to be super optimistic like her she will say, "Remember be Poppy, not Branch!" There's only room for one Poppy in this family! But room for lots and lots of Branches. Branch is the dull, glass half empty, worse case scenario guy. I'm not not a dude. I am one of the living Branches in this family.

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Watch Your Step

Well...if they're is one. A real one. 

If you want to see an unflattering angle, this one was it. 😄

Until tomorrow, Ciao!


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Don't You Remember??

Here comes the quote of the day, I think it's funny:

Note to Self: 
Write a note to remind myself of 
where I put the last note I wrote.

Oh memory, how I took you for granted. I didn't think I would have these issues until my 80s. Pretty sure someone in their 80s were more on the ball than I am these days. If you experience these problems or something close to what I'm about to give you, well see you're not the only one. NO it's not just something that WE ALL do. I loath that response. 

Making those posted videos are actually pretty difficult for me. I have to try and organize my thoughts and keep them more than usual. When I have a conversation in person or on the phone I have some serious Rain Man moments. Just the speech, not the exceptional knowledge. 

I stutter. I start speaking then.......................about that long of a pause. Finding words is a nightmare. You know the scene in Titanic when Rose is trying to say propeller? She keeps making the motion of the propellers to try and get the word out. Well I do that about 100+ times a day. Not all come from an absence seizure either. It's permanent. 

I misplace things ALL the time! For a week I kept putting the milk in the cupboard. Then I would see the fridge and realize that I had just put the damn milk in the damn cupboard. Joel will ask me where I put something. I give him that 'deer in the headlights' look. Wait for it, wait for it...."OH! I put your hat upstairs on the couch." Does that seem like a logical location? Now he just puts it on the dresser. 

Wait, what were we talking about? Oh my memory! 😂

This is what happens most of the day. Even more so when no one is home. I start thinking of something I need to do or get. I might pace between the kitchen to the living room. The living room to the bedroom. The bedroom back up to the living room. The bedroom to halfway up the stairs, then back down to the bedroom. This maze chase happens at least twice a day.

"Gabby, what are you doing?" 

"I was going to get something out of the kitchen."

"Well what are you looking for?"

"IF I KNEW I WOULDN'T BE PACING BACK AND FORTH!"

Something like that. I get so pissed when I can't remember what the fuh I'm doing. There's so many stupid little things that mess up my day too, too bad I can't remember them right now.

I'm surprised Joel hasn't had to make a missing persons call. If I didn't take Pepper on walks, that's probably how it would go. So who's really walking who?? I think Pepper is walking her Mommy. So sad. good thing she's so smart. She's like SUPER PEPPERS!!!! 

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