Mara's journey w/ Epilepsy.

I've had epilepsy my whole life, but it doesn't have me! This is my journey with Epilepsy. All in the hopes of being SEIZURE FREE! Thanks to my friends (who are my family) for your support!

It’s almost 2014 & I haven’t posted on here, in forever.

I don’t think anyone goes here anymore, since most of my posts are on my caringbridge site. However, even if there is 1 person reading, I have to say that life is better since 2011. I have been seizure free for over 2 years, The 3 year mark will be here very soon. It’s so scary, to write this because it’s so wonderful, that I don’t want it to go away.

I still deal with pain & many cognitive issues. ESPECIALLY memory, so I’m trying to figure out what I can do as a career now. Since performing was what I did before all of this memory loss.

Starting over at 40 sucks. But I have to keep in mind, that I’m seizure free! OMG, I can’t believe it.

I’m down to ONE seizure med only. Which is insane too. SO AMAZING, it’s hard to believe.

With dedication, fight, courage, strength, & so much more, I am seizure free. Again, I’m never on here. But wanted to post some sort of an update, just in case.

This is my YOUTUBE page:http://www.youtube.com/channel/UClxarVTdCy1u7aw9DuhCOeg/videos

You can watch a few Epilepsy related videos & also message me that way too.

I always have to thank my amazing friends!!! They are my family & my support system.

Keep fighting :)

Love, Mara

7/22/13

I found my diary from when I was a kid, & mailed it to my neurologist, to use for teaching. I don’t mind being used as an example. Anything to help others with Epilepsy. Doctos too.

IIn my diary, (when I was kid), there are MANY pages of thing’s like: 
*”I’m getting those weird feelings”
*”My stomach hurts all the time”
*”I’m scared when I keep getting those weird tastes in my mouth”
*”ITS happening to me again & I’m scared to be alone”
*”I had to go home cause I got that feeling again” (This particular page, I mention over & over in my diary)
*”Something is wrong with me & I can’t explain”

Those are just some examples. But the diary is a great example to fellow neurologists, to give them a glimpse of what a seizure feels like, when it’s not obvious by looking. Especially because when your a kid, people brush it off as “She’s just being a kid”……… But I remember having aura’s & seizures ALL the time. I just didn’t KNOW that I was actually having a REAL problem. Seizures!

May 29, 2013

I know it’s been a long time. No news is good news, right? :)

Yesterday, the pain was back full force.
As usual, it’s so hard to look/act so great, but not feel that way. Like Epilepsy, it’s invisible.

It’s days like this, that I really yearn for support & love. Pain is really difficult! It’s hard to explain, unless you have been through it. Ya know? 

To end a lovely note :)
See the pic attached from 5/19. It was my 2nd annual “seizure celebration 5k walk”


FAVOR!!!!

I have a favor!

Remember the youtube video that Mark made, while I was in the hospital, in 2011?  Well, I no longer have that youtube page anymore.:: I thought that it would get transferred over & it didn’t.  Which means, I no longer have everyone’s wonderful, beautiful, loving comments, either.

I WANT YOUR COMMENTS SAVED FOREVER! So my favor is to watch this video again, & leave your comment! This time I will make sure to save them, forever!  Mara’s Journey with Epilepsy is now here:http://youtu.be/DjtRytal3E0

Pretty please!

HUGS & thanks!!!!!

-Mara
(Yes, I just asked you to do this):-*

March 29, 2013

Tonight is my LAST time, I will be taking Keppra.(knock on wood of course) I seriously cannot believe it.

First I got off Tegretol. I couldn’t believe it. I’ve been on that forever. That’s the drug that caused my osteoporosis.

Now after tonight, I will be of Keppra too. I really can’t believe it. This drug had so many side effects.

After tonight I will only be on ONE seizure med. OMG, this is amazing.

Thank you for being my support system.

This is from Feb. 2013

Today, I’m not crying. BUT, I’m terrified & still want to say “please don’t go away” Meaning, please make the seizures stay away.

I’m still dealing w/ pain & I’m working w/ my neuro-psych, weekly! We just started a “forgiveness exercise” Take a wild guess who I started with? Yes, Dr. Rosenow. My neurosurgeon. I won’t be able to forgive him overnight, for causing me pain for the rest of my life :( But this exercise did help me realize, that while he changed my life forever w/ pain. He also (as of now), helped my seizures stay away.

Tomorrow will be the LOWEST amount of seizure meds, I have EVER been on, in my entire life. It’s truly hard to believe! I was on over 6 different seizure meds. Before surgery I was down to 4. In a few weeks, (if everything still goes right), I will only be on 1 seizure med. Shit, I just started crying. It’s good tears :)

Thank you for being my family & helping me through this journey.
I hope you enjoy this picture, as much I do. I truly can’t believe it!

Love, Mara

This is from Jan. 2013 (I forgot to post this on here & it’s important)

My apologies for sending another post, today! I know, it was only 11 hours ago, & here I am sending another.

I’m totally sick to my stomach! It’s GOOD. Don’t worry.

Some of you are NOT on facebook, so I wanted to let you know, this is what I posted:
Today marks an amazing milestone & anniversary! I’m FREE of something; I’ve had my whole life. (I’m too scared to even say the 2 words. If you’ve followed my journey, you know the 2 words) Last year I was too scared to celebrate. Fearing, it may not last. (I’m nauseous writing this) I’m sure I will feel excited & terrified, every year, on 1/27. With the help of my support system, friends & my neurologist, this year, I “WILL” CELEBRATE!

After i posted the above, I started crying & got very nauseous. I’m sure I will be happy, tomorrow celebrating. I’m glad that I’m allowing myself, to finally celebrate.
Being 2 years “seizure free” is a BIG DEAL. It’s so big, that’s incredibly terrifying to admit.
I’m starting to cry again.

Once again, thank you for taking this tough ride with me.

Happy 2 yr “seizure free” anniversary! (Every time I say that or think it, my stomach goes nuts)

How times have changed. Today you got 2 updates & BOTH WERE GOOD.

OK, off to bed.

Very good news!

I don’t write on here often. If I have any updates, I use my Caringbridge page, but it’s not open to the public.

I want to let you know that a few months ago, I was take OFF Tegretol. Then 3 weeks ago, I was taken OFF Keppra. I’m writing this, & not believing it. I never thought it my wildest dreams, I’d be on less seizure meds. Let alone OFF any!!!

It’s such amazing news, that it’s absolutely terrifying at the same time!

I’m still on lamictal & am totally ok with it :) Being off two seizure meds, is more than I can ask for.

There is still after effects from surgery & from seizures my whole life. Although, I am understanding how to deal with the obstacles, much better than before.

Some thing’s just can’t be fixed. BUT, being on less seizure meds, & not having any seizures for 2 years, is beyond amazing! I still have to “knock on wood” every time I mention being seizure free. I just don’t want the seizures coming back.

Again, I can’t believe this is happening to me! So much struggling, fighting, perseverance & determination. I couldn’t see the light at the end of the tunnel practically my whole life. Now, Im beginning to see it :)

Regardless of what happens in my future, I can say without a doubt, that I am a very strong true SURVIVOR!

Thank you to my friends, for being my family!

Still hard, but so much better :)

I don’t post on here much. If there’s anything I need to get off my shoulder, I go to my caringbridge site. So here, I’d like to try & give GOOD updates :)

A couple months ago I was taken OFF Tegretol. YAYYY! I never thought this would happen. Never! Now, in a few weeks, I will be OFF Keppra too. I really can’t believe this.

Tegretol did cause my osteoporosis, so it’s wonderful that I’m off of that. Damage is already done, but I’m still grateful to be off.

Once I am off Keppra, I will only be on Lamictal. (I’m literally shaking right now) It’s so exciting & wonderful. But still scary at the same time.

I’m struggling with the NEW Mara. Not being able to memorize a script, is beyond sad for me. I never thought I’d stop performing. Never! Every single seizure (all my life), damaged my brain.
I’ve done everything I can “Cognitively” &  “it is what it is” It absolutely sucks & is very difficult to except. Me, not performing? I never thought this would happen.

I’m still living w/ pain (but I manage it now better)…This April, will be 2yrs of pain. Doesn’t sound like a lot, to some. Trust me, it seems much longer than 2 yrs.

I will end on a wonderful note :)


1/27/13: 2 yrs seizure free

2/2013: Off Tegretol

3/2013: will soon be off Keppra

I am a survivor! I fought my whole life & now I’m fighting, but w/ no seizures.

Thankful to my FRIENDS! Who are literally, my family.

I don’t think I will be posting on here, very often. I’ve learned that the more I concentrate or think about my journey, (the bad times),the more it’s at the forefront of my mind.

I’m still dealing with pain & I am either getting more used to it, or it’s getting better. Regardless, it’s better than a year ago :) Not sure it will ever go away. I guess TIME is a big factor.

I just had my 2yr “seizure free” anniversary on 1/27/12. I was too scared to celebrate a year ago. Mostly because I did celebrate in 2006 (from my first surgery) & years later it blew up in my face & I had to have another brain surgery in 2011.
With the help of my friends & my neurologist, I made the decision TO celebrate. Anytime I think or talk about being seizure free, I get sick to my stomach. Or I say “knock on wood”. I don’t know if that will ever change.

It’s amazing & terrifying at the same time! To have epilepsy my whole life & then, to be seizure free, is like “starting over”….I’m nervous, writing this now.

The starting over part has been hard. I’m turning 40 soon & I’m single, no kids & no career. I was an actress my whole life, & that HAD to change, because of memory loss. Both from so many seizures & brain surgeries. I still model, when I can. But am concerned I will never get over the fact, that I won’t perform anymore. It’s deep inside & has been a passion, my entire life.

Hopefully in time it will become easier to ACCEPT that I am seizure free.

I still advocate & spread awareness, daily! This will never change :)

I hope the next time I post on here, it will STILL be good news.