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Miracles for Marissa

$17,405 of $25,000 goal

Raised by 200 people in 18 months
Created June 16, 2017
Lee Ann Tejeda
on behalf of Marissa DeVaul Parmer
                            MIRACLES FOR MARISSA

Hello, my name is Lee Ann Lewis Tejeda.  I am a long-time friend, Delta Zeta sister of Marissa DeVaul Parmer. As some of you may know, Marissa was diagnosed with Epilepsy in 2005. Throughout the years, she has experienced uncontrollable seizures and later, was also diagnosed with Fibromyalgia.  Since November 2015 the seizures have spread to both sides of the brain, becoming more intense, and occurring 6-10 times a day and also many in her sleep.  She lost her license, making life as we all know it, a little more challenging, as far as, getting to work, social outings, or even the simple things such as picking up her children from  academic and/or sports activities.

 If you know Marissa, sitting at home and doing nothing is not for her, so she has trudged along with Brent, her boys and family/friends by her side.  But needless to say, the medical expenses for monthly specialized medications and procedures have added up and recently, Marissa underwent surgery to implant the RNS system into/on her brain. The surgery is of cutting edge technology and if all goes as planned, she could one day be seizure FREE….Miracles for Marissa!!   However, until that day comes, she is required to be in Florida every eight weeks for follow-up appointments, which is why I’ve created the go fund me page to help with medical and travel expenses.

 Please consider donating, any donation, no matter how small would be graciously appreciated and let’s rally around Marissa and her family and help relieve some of the financial pressure so she can focus on healing and being a mom, wife, daughter and colleague/friend.

 Much love,

Lee Ann
+ Read More
#EpilepsyAwarenessMonth
It is the last day of November & I want to thank all my family, friends, colleagues & all others that took the time to educate yourself as well as others throughout this month on various #EpilepsyFacts.

A special THANK YOU to all of you during our ups and downs as we have battled #Epilepsy since my official diagnosis in 2005 at Mayo Clinic in Rochestor, MN. The help with rides due to my loss of my DL, the listening ear when I needed it, help with the boys when they were young again now when older to get places.......and MUCH MORE.

Since November 2015 it has become an even larger battle for us as a family against this invisible illness called #Epilepsy. We have been back & forth to Mayo Clinic in JAX, FL every 6-8weeks. My personal DR even taking my case to round tables with other Mayo Doctors from all 3 locations, trying to figure the best options for me.
The one thing they did discover is they added autoimmune Epilepsy on top of my 3 other types already there.

After discussions with the doctors, they provided us hope with a new RNS device as you know I had implanted in May 2017. (1 of 1000 in the country) As scary as it was to have this done, it provided us hope due to all the non-stop seizures throughout the day and my sleep while on 3 medications at this time.

Fast forward to today and we are still constantly making adjustments to the RNS device programming, now 4 medications & starting a new one on the market next week.

The past month the doctor had me go on an adjusted work schedule (blessed I was able to be accommodated by my supervisor & help once again from colleagues) to see if changes made would reduce my seizures & unfortunately no changes.
I returned to Mayo & had 5 days of IVIG infusions, a 72hr EEG, and it showed the seizures are spreading like a cancer does through someone’s body. Scar tissue has gotten worse on my brain with a potential mass.

Due to all this my body has gotten to the point I can’t “push through” a full day of work and still be the mother & wife I need to be at home. Instead, I would be crying at night missing my boy’s events due to nonstop seizures & the unbearable pain. Or on the reverse side, I push through all that & end up in bed the next day, unable to work due to nonstop seizures. So I was “failing” everyone in my eyes, even as hard as I was trying.

My last Mayo visit, my doctor decided I needed to go on FT FMLA starting December and January. I will return to Mayo December 21st for a CTSCAN, an update on what the DR has been reading on my RNS device & what our next options are.

As I left work today it felt surreal to think I will be off for so long, and it will be tough not having contact with individuals Which I am in contact with daily. I am not a very good patient when it comes to “resting or taking care of myself”. I am better at giving advice & taking care of others......it’s in my nature. I always want to provide that impact on someone’s life & of course always do things for my family. Them waiting on me, I don’t do very well at.

I know in my mind it’s the best choice, so it provides hope for my body to heal and possibly have less seizures a day. We know it is very slim I will ever be seizure controlled but anything is better than now.

So here is to 2 months of focusing on myself with my family & having faith lead me the right way. Continued prayers needed please.

#WeFightEpilepsyAsAFamily

#EpilepsyWarrior
#EpilepsySucks
#EpilepsyFighter
Facts wrap up
I am one of those people
Resting to battle for them
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Fact #26#EpilepsyAwarenessMonth
Typically a person with Epilepsy will go through 3 phases:
1) Aura/trigger/& or could be symptoms (a person w/ Epilepsy may take a while to recognize)

2) The actual Seizure (the scariest part for the caretaker to observe & most of the time not remembered by the epileptic)

3) Postictal/recovery phase (the toughest part on the epileptic, see image below of potential examples.) For me I typically am completely out of it, wiped out, fall into a deep long sleep & awake as of my body has been beaten. Even after awake, I am not fully aware or comprehend what has happened or what is currently happening around me. It is like walking around in a “brain fog” for a while.

Unfortunately; not all individuals and or certain types of seizures provide that aura/warning sign. (The caretaker may need to learn some “potential warning signs” to keep the Epileptic safe)

#EpilepsyFighter
#EpilepsyWarrior
#WeFightEpilepsyAsAFamily
Recovery signs potentially
Seizures reoccurring close together
Unless u experience it u won’t know
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EpilepsyAwarenessMonth
I missed Fact update yesterday so we are doubling up days 23 & 24.

HOME MEDICAL UPDATE
Yesterday I had that experience that is hard to explain to anyone who does not have #Epilepsy or ever been around someone with it. Most of the day I was walking around in a “blurred or dazed feeling”. You are completing tasks & can hear what’s going on but yet you are not fully “aware” & sometimes unresponsive to others. I also tend to wander during these type of seizures. Some may compare it to “sleep walking”.
Due to this I made a HUGE mistake with my medications which unfortunately effected me last night and today with adverse effects. I had taken my 8pm pills at 2pm & my 2pm pills at 8pm.
Needless to say this is another reason marked pill boxes, pill alarms, and caregivers are VERY important.
Due to the above, my pill box is now marked by times pills are taken & my night pills are going in a separate box container. (I already had pill alarms & a constant watching caregiver) The taking of wrong pills at a certain time, scared us both.

Today was an ok day with multiple small seizures & one that was off the “pain” level chart for my chest pain, coming out of nowhere with me screaming. The easiest way to describe this is someone taking a knife to my chest causing a stabbing pain and sitting on me making it difficult to breathe. At the same time numbness is going down my left arm and my hand tingling all over. Trying to communicate through stuttering words.

MAYO PORTAL UPDATE
My Mayo DR is currently working on adding in a 5th medication, due to the seizures continuing to get worse. This should happen within the next week or two.

Needless to say it’s been a rough few days, but at least I am with my family for Thanksgiving & the BUCKEYES WON!!

Keep spreading Epilepsy Education based on the photographs attached.

#WeFightEpilepsyAsAFamily

#SeizuresSuck #KeepTheHope
#EpilepsyWarrior #EpilepsyFighter
Different seizures different response
MANY types of Epilepsy
Family has stress too due to Epilepsy
+ Read More
Epilepsy Awareness Day 22
In honor of Thanksgiving, I want to take time to recognize how difficult it can be as a caregiver to someone with a chronic illness, such as #Epilepsy. So THANK YOU to all caregivers out there. I am especially thankful for my caregivers.....there are many of them but my husband is definitely the ROCK.

I am extremely blessed I have a husband that has stood by my side on this long medical journey that officially began in 2004 & diagnosed in 2005 at Mayo Clinic in Rochestor, MN.

We have had our ups and downs with this battle against this lifelong chronic illness that does not have a cure. It is just a matter of times of when it is controlled & uncontrollable.

Many times of changing of medications, driving/not driving, hospitalizations etc.

Fast forward to 2015 & my #Epilepsy took a turn for its worst version yet and puzzling the best Doctors in the world.
2016 they ran many tests, hospitalizations, changed drugs and than ultimately decided a new option of the RNS implant was my HOPE come May 2017.
Here we are still puzzling Mayo doctors with the RNS implant along with 4 medications & my #seizures continuously getting worse.

Through ALL of this not once has my husband not stood right next to me & fought this continued battle of “our” lives. It is never just “my” fight. THANK YOU MY LOVE!

By his example, our young men have learned to be just as compassionate and caretakers for their mom. As much as I HATE that at times, I know I am blessed by this and I hope this carries with them as they become adults and one day family’s of their own.
Of course I can’t forget my beloved dog Dash, who has also become a caretaker as well.

#WeFightEpilepsyAsAFamily
#EpilepsyAwarenessMonth
#Blessed #Thanksgiving #blessedmom #blessedwife #Blesseddaughter
Thank you to all HEROIC caregivers
Bryce, Dash & Broc u are mom’s heroes
Sleeps by my Mayo bed& smiles daily
+ Read More
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$17,405 of $25,000 goal

Raised by 200 people in 18 months
Created June 16, 2017
Lee Ann Tejeda
on behalf of Marissa DeVaul Parmer
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