Woke myself up to shaking at 1am this morning.
I stumbled my way to the bathroom and stood over the sink, crying out to God to make the seizure stop.
My right leg was violently kicking the closets underneath the sinks and my right hand was jerking. No matter how hard I tried to grasp the sink, my arm/hand knocked over the hairspray and whatever was on the counter...
(why do I think I can ever make a seizure stop? There's nothing I can do in my own power to EVER make it stop. It's the most out-of-control feeling you can ever imagine)

That's when a voice inside my head said "get down on the floor."
(something I remember being taught so I didn't fall and break something)

That's when I yelled for Ryan. He came running and held me as my seizure finished.

This was UNLIKE any other seizure I've ever had. ALL of mine up to this point have been "grand mal" and I've been unconscious~ unable to recall ANY of the events. This time it only affected my right side, and i was awake the whole time.

Ryan really felt like we needed to head into the ER since it was almost 8 months without having any seizures.

I submitted...but it wasn't easy

We spent 2.5 hrs in the ER. My arms were pricked with needles. They started an IV to pump me full of fluids and meds (I had a severe migraine prior to going to bed and was dehydrated~ just had gotten home 2 hrs prior from the most perfect day at the beach), drew some blood, peed in a cup (found I had a kidney infection), and talked to the ER doc. We came to the conclusion that it was most definitely a "rebound seizure" from not taking the FULL dose of my Topamax. The last 2-3 days I was trying to thin them out as I realized the rest of my dose wouldn't be in till Mon. In order to do that, I was halving my dose. I know Topamax is one of the drugs that the Neurologist would like to wean me off of eventually...but I now know, that the timing is NOT NOW. Looks like I still need the FULL DOSE of ALL my drugs in order to stay seizure-free.

I praise God that we were able to track down the REASON behind the seizure, and that it wasn't a grand-mal seizure...although any seizure SUCKS!! 

Ryan & I have spent most of the day trying to rest. It was definitely a rough and unexpected morning. We would appreciate you prayers as we still take "one day at at time." We know God is in control...even when things seem to be out of control again.

A BIG thank you to Ryan's parents for inviting us over for dinner~ homemade chicken corn noodle soup, fresh fruit (watermelon, black/raspberries, grapes), the infamous custard~ all of which feels so good on a nauseous belly...and of course offering us the use of their luxurious hot tub to sooth the sore and tired muscles. It was just what the doctor ordered.  Thank you from the bottom of my heart.

We love you all and thank you again for all your support, love, and care.

Jen (and Ryan)

~Some trust in horses, some trust in chariots..but WE WILL TRUST IN THE NAME OF OUR GOD~

I don't know if any of you out there remember this old time classic song by Randy Stonehill, but I was reminded of it~naturally~last week as I "turned 30". I love Randy because he reminds me of my parents, especially my dad because of growing up listening to him. He's a great guitarist and full of humor.  

Here are the lyrics with the last verse as my favorite:  

"Turning Thirty"

I'VE GOT A HOUSE DOWN BY THE OCEAN 
THE RENT IS NOT TOO HIGH
AND I LOVE TO WATCH THE SHIPS COME IN
AND HEAR THE SEAGULLS CRY
AND LATELY I'VE BEEN TAKING STOCK
OF ALL THAT I'VE BEEN THROUGH
OH TOMORROW IS MY BIRTHDAY
FEELS FUNNY BUT IT'S TRUE
I'M TURNING THIRTY

NOW I'VE GOT A WIFE WHO REALLY LOVES ME
SHE MAKES MY LIFE SO SWEET
AND A LITTLE BABY DAUGHTER
WHO PLAYS GAMES AROUND MY FEET
AND MY WORLD IS VERY DIFFERENT
FROM LOST LAZY BACHELOR YEARS
BUT IF I HAD THE CHANCE TO GO BACK
I'D RATHER STAY RIGHT HERE
TURNING THIRTY

AND I HAVE FRIENDS WHO CARE ABOUT ME
THEY'RE THE BEST I'VE EVER HAD
AND THEY ALWAYS STOOD BEHIND ME
WHENEVER TIMES GOT BAD
AND I LOVE TO PLAY MY MUSIC
THOUGH THE ROAD CAN BE AT TRIAL
BUT EVERY TIME I WALK ON STAGE
IT'S WORTH EACH DUSTY MILE
TURNING THIRTY

WELL, NOW THIRTY AIN'T LIKE FIFTEEN
AND IT'S NOT LIKE TWENTY-FIVE
MY BACK'S A LITTLE STIFF
AND THERE'RE SOME LINES AROUND MY EYES
BUT I'VE STILL GOT MY ENERGY
AND I'VE GOT MOST OF MY HAIR
AND I'M NOT TOO OLD TO ROCK 'N ROLL
AND I'M NOT REALLY SCARED
OF TURNING THIRTY
I WROTE THIS SONG EIGHT YEARS AGO
MY, HOW TIME FLIES AND SO DO I

OH, THE NINETIES LOOK LIKE TOUGH TIMES
THE WORLD IS TURNING SOUR
SO I'LL KEEP ON SERVING JESUS
AND AWAIT THE FINAL HOUR
AND THOUGH I'VE OFTEN FAILED HIM
IN THESE THIRTY ROCKY YEARS
HIS MERCY BROUGHT ME THIS FAR
AND HIS LOVE HAS DRIED MY YEARS
I'M TURNING THIRTY
I'LL TREASURE THESE YEARS
I'M TURNING THIRTY
I'LL TREASURE THESE YEARS TURNING THIRTY

So I have to admit...several weeks leading up to June 18th~ my 30th b-day ~ I was really struggling with just the idea of turning 30. I guess in my mind there were certain things that I thought that I would have accomplished by now. Like having a least one child, being able to drive (which I was then released to do!!), having more of my energy back, not being on 6+ pills a day...etc...  I guess you could say I was not looking forward to the whole idea of turning the big "3-0."

Then several days before the "big day" it was like a lightbulb went off in my head and EVERYTHING changed inside of me. Could this year get any worse than last year??!! I underwent 2 brain surgeries...spent a month in the hospital, had over 15 seizures~ all of which I was unconcious for, spent several times in and out of the E.R., got my license taken from me and couldn't drive, and, well, this year pretty much was the hardest year of my life.

 

So...I actually became EXCITED to turn the page and start a NEW year!! A year where Ryan & I can DREAM AGAIN!! I really feel like this is going to be a GOOD YEAR for me...and us. I mean...can it get any worse than last year?!!   We have become stronger people through it and now want to MOVE ON and MOVE IN  to our destiny. We can't wait to see what the Lord has in store for us!!

~So here's to GOODBYE 20's and HELLO 30's~

~and more SUNSET'S than storms~

Thank you to my wonderful husband you has never left my side during these past 3.5 years of marriage~ most of which were filled with more hard times than good. Thank you for believing in me when I couldn't at times and for being more than a dream come true.

Thank you most of all to the Love of my life, Jesus, for bringing me THROUGH a hard year...and for never leaving me or forsaking me. You are so faithful and true to your promises. All that has been in my life up to now belongs to you~ for you are still holy. 

Today is our 6 month seizure-free anniversary. I say "our" because even though Ryan hasn't physically had any seizures, he has emotionally and mentally walked this 2 1/2 year journey with me. In some ways I think it's been harder on him than me. Watching your loved one be out of control and feel so helpless and just watch, is extremely difficult...so I hear. Thank God I haven't ever had to watch a seizure.  . As guys especially, they like to "fix" things. With a "storm" happening in my brain, each time, it could not be fixed. We just had to wait for the storm to pass and for things to become "normal" again... which felt like an eternity.

~Through this CrAzY ride of life that we've experienced...

~spinning out of control~

~circling a kaleidoscope of emotions~

We have remembered that love is what makes the ride worthwhile...and that GOD is in CONTROL and is the one the holds us together through thick and thin.

~we have FAITH, FAMILY, and FRIENDS...and that is what can get you through anything.

  

Life has taught us that love does not consist in gazing at each other but in looking outward together in the same direction~Saint-Exupery

Thank you, Ryan Matthew, for standing by me and reminding me that we are "in this together"...you are more than a dream come true and are outstanding among ten thousand million. 

Also~ thank you to each one of you who has walked with us and has prayed heaven down on us. We have felt covered, blessed, and encouraged by each one of you. Don't stop the prayers now! Keep 'em coming!! God has a lot in store for us and we're finally starting to dream BIG again!! WATCH OUT!!

We love you~ 

J & R

** photo compliments once again by http://www.kimmccallphoto.com/index2.php

 

What a FUN Memorial Day Weekend!!

Friday:

We got to finally hang out with Nate & Jenny at their new home.  Jenny grilled up an amazing meal of Caribbean Jerk Chicken, garlic chicken, and grilled pineapple with homemade sauses for dipping. She also made a killer salad and french fries (with olive oil and Old Bay seasoning). Everything was incredible and looked like somthing out of a magazine. I brought strawberries and brownies for dessert. They are expecting their first baby the beginning of August...a baby boy!! 

Saturday:

Mother's Day Cruise!!  Please go to my mom's blog for some fun pics:  www.xanga.com/chulya  (i forgot my camera!! )

Sunday:

Saw my wonderful friend at church, Kimmi, who just got engaged!! I am SO excited for her!! And NO...we didn't try to dress like twins.  

Driving in the car...just being "us"...

Bad hair day??!!

Don't look too excited for that kiss, Ryan

 

...to meet up with our dear friends, Scott & Katie who were up from West Virginia, at T.J. Rockwells for lunch. We had a wonderful time catching up. Too bad we don't live closer.

 

Monday:

Ryan & I took a spontaneous trip to the BEACH!! We went to the closest beach to us (2.5 hr drive)~ Ocean Grove~ and enjoyed a WHOLE DAY soaking in the sun and 100% pure RELAXATION. It was just what the Dr. ordered.

We made "Waldorf" salad and packed it in a cooler. Does anything taste better than fruit, salad, and lemonade at the beach?!!

My toes got to feel the sand again...it was toelicious!!

I feel myself DREAMING when I'm at the beach...such tranquility...

a saying on my hoodie...(not entirely true...but...)

We even found a bench to truly CELEBRATE Memorial Day!!! RED...WHITE..& BLUE!!

Hope you all had a wonderful Memorial Day weekend!

We praise God that I am still seizure-free and the count down is on till I can drive...11 more days!!

God is good...ALL the time!

I was hoping to do something EXTRA special for my mom this year for mother's day. Last year, I spent mother's day laid up in a hospital for a month with wires coming out of my head, and being tied to a bed. It was the hardest month of my life. Feeling so out of control as we "prayed" for seizures and the surgeons cut open my head to take out the affected piece of tissue that was sparking off my seizures.

So, anyway, since things DO come to pass (praise God!), and I'm feeling ALOT better and coming up on 5 months being seizure-free (tomorrow!!)...and CAN do something for my mom this time around for Mother's Day...

I enterered her in 14 Mother's Day contests!! I just google searched "Mother's Day contests" and entered my mom in everyone I could find!   I did a lot of praying and hoped she would win at lease one of them for ALL that she has done for me...especially over these past 2.5 years.

Well, I got a BIG congtats email yesterday stating I had won tickets for 4 for the Mother's Day cruise aboard the "Spirit of Baltimore," courtesy of Entertainment Cruises!

Here's the "essay" that brought in the winning vote that I submitted:

My mom should definitely win the "best mom of the year(s)
award...specifically the past 2 1/2 years.

You see, on Dec 2nd, 2006, shortly after I got married and moved out of
the house, I got diagnosed out of the blue with epilepsy~ a seizure
disorder. I ended up in the Emergency room, unconscious with a bunch of
tests being done. We praised the Lord that everything came back normal
but were still very frustrated when seizures were still occuring for the
next 2 years~ even with meds. That's when the doctors suggested I get
brain surgery to help control my uncontrollable seizures that were
affecting my daily life.  My husband, Ryan, and I spent a lot of time in
prayer and felt a peace with moving forward with this BIG decision. One
year ago (May 2008), I spent a month at Thomas Jefferson University
Hospital I underwent brain surgery (a right fronal craniotomy) to remove
the affected brain tissue that was causing the seizures. My husband and
family were there to support me and pray me through my entire time
there. The part of the brain they removed controlled my motor and speech
skills and there was a possibilty that I may never walk or talk
again...but praise be to our awesome God...I came out of surgery walking
and talking!!  Since Dec 2nd, 2006, I have NOT been able to drive. My
mom has been my cheauffer- taking me to work everyday (I was able to
return back 3 mos after my surgery). She selflessly gives of her time
every day helping me run errands, taking me to appointments, and being
there for me. She is an amazing woman of God and has faith that God is
going to get me through this trial stronger than ever. She has prayed me
through one of the hardest times of my life. I'll never forget her just
crying with me after she heard news of another seizure...our faces both
wet with tears. Sometimes there are not words. She would just lift up
prayers to Jesus, pleading on his behalf to heal me. I know God has
heard her prayers, because on June 11th (my 6 mo mark of being
seizure-free), Lord willing, I will be able to drive again, after 2 1/2
years of not driving! God has heard our cries. On this mother's day, I
would like my mom to be awarded the "Best Mom Award" for sacrifically
laying down her life day by day for me as I was in the most dependent
and helpless state of my life. Thanks for standing with me these past 2
years as I went through brain surgery, mom. I could have NEVER gone
through it without you.  I love you so much and I pray that one day~ If I'm able to ever have children, I can be an amazing one like you.  ~ Jenni

 

HAPPY MOTHER'S DAY, MOM!!

YOU DESERVE A "CRUISE" AND SO MUCH MORE.  

THROUGH GOOD TIMES...AND BAD...YOU HAVE BEEN BEEN BY MY SIDE...PRAYING/CHEERING ME THROUGH.

I DON'T KNOW WHAT I WOULD HAVE DONE WITHOUT YOU FAITHFULLY PICKING ME UP FOR WORK EVERYDAY.

MAY YOU BE BLESSED ON THIS MOTHER'S DAY FOR BLESSING THE LIVES OF SO MANY...ESPECIALLY MINE.

I LOVE YOU~

jenni

Can't believe it was one year ago that I had brain surgery. In some way...it feels like an eternity ago..and in other ways, it feels like just several months ago. Weird.

SEASON'S CHANGE...

(and so do hair)

but GOD NEVER DOES...

I prayed I would find the Love of my life...

and in God's perfect timing...

I got ENGAGED to Ryan Matthew (July 23, 2005)...

at sunrise, by the Cape May, lighthouse on the beach

 

We got married 5.5 months later (Jan 7, 2006)~

The BEST day of my life...

We promised to love eachother for "better or worse...in sickness or in health..."

 

We had a wonderful 9 day honeymoon in Jamaica...on the white sand beaches...and  crystal blue waters. Perfect.

Fun times followed...we LOVE being together

 

Then out of the blue it happened. The day we will NEVER forget. Dec 2, 2006, (1 month short of our 1 yr anniv)when I woke Ryan up out of sleep to out of control convulsing, bleeding out of my mouth (I had bit my tongue), and then unconsciousness. Ryan called 911 and the ambulance came and took me to the ER. Little did we know that our lives would be rearranged forever. They ran a series of tests on me...all which came back normal...PTL...but still we were very frustrated as to what caused all of this. I was a very healthy 27 yr old. What happened?

Anyway...as most of you know already know if you have been keeping up with my blogs now for any length of time, 1 year ago from today, May 2, 2008 (I wanted to post this yesterday, but was in DC for a conference), I needed to have brain surgery (phase 1) to control my epilepsy. I had tried many medications, but was allergic to many, so the docs felt brain surgery was the next best option.  Spending a month together at Jefferson Univ. Hospital, Philly, was not easy....even had to be tied to a bed with wires coming out of my head! I never experienced that much pain and uncertainty in my life.

God is in control...

even when everything else seems out of control.

 

Psalms 18:16-19

16 He reached down from on high and took hold of me;
       he drew me out of deep waters.

 17 He rescued me from my powerful enemy,
       from my foes, who were too strong for me.

 18 They confronted me in the day of my disaster,
       but the LORD was my support.

 19 He brought me out into a spacious place;
       he rescued me because he delighted in me.

God is faithful!!

  Keep holding on...nothing is impossible with Him. He is on this journey with you and He will carry you through!!

p.s. thank you to my amazing husband who has truly taken his vows seriously and has loved me in "sickness and in health" and for better or worse."  He has walked beside me in this crazy journey of love of 3 years. He truly is outstanding among 10 thousand. Thanks for reminding me that we are "in this together." I love you, babe.

 

 

Our friends, Pete & Felice got married on Saturday at Felice's parent's barn in Pittsburgh.

What a GORGEOUS weekend to get married with temps in the 80's.

Helping to clear all the furniture out of the house (barn) to set up for the ceremony...

The guests stated to arrive for the 5:00pm wedding.

I was getting so nervous for Ryan...as it was his FIRST ceremony officiating.

He was the first one to enter the front of the "altar" at 5pm in flip-flops. Yes...all the men wore flip-flops...even the pastor.  (part of Pete & Felice's laid back/chill personalites).

The mothers lighting the unity candles (Felice's mom on the left...and Pete's mom on the right).

 

Felice looked beautiful as always...

and there was such a sence of strong love for one another that shone through.

Lighting their candles...

This couple could not BOTH get through their vows without tears. This part has become alot more meaningful these past 2 1/2 years and I was crying with them as well.   Ryan did an AMAZING job...if I might say so myself   Actually alot of people were surprised when they found out later that it was his FIRST ceremony that he has EVER done!!  I was so proud to not only be the guest that day...but also the preacher's wife

"You may now kiss your bride"   (I love that part!!)

MARRIED!!  Mr.& Mrs. Peter St. John!!  YAH!!! 

Congratulating the happy couple

 

Felice's wonderful family...always there to "hold you up" and support you in your dreams

The "bouquet"

*thanks to a good friend of Ryan...we were able to borrow Loren/Denae's camera and get some great shots of the wedding. Thank you guys!! (some of the pics I took with my digital point/shoot..I'm sure you will be able to pick those out )

A BIG Roomies HUG!!  (Marianne & Toby (just married 3 wks ago), Felice & Pete, and us.  Pete, Ryan, and Toby all roomed together at Eastern University.

And what GOD has joined together...let NO MAN seperate!!!

The bridal party...

 

JUMP FOR JOY!! 

YAH!!!

APRIL 25, 2009

THEY GOT MARRIED!!

p.s. check this awesome site out for a slideshow:

http://vimeo.com/4345151

 

I was SO excited to see "EPILEPSY" featured on the front page of Newsweek magazine.

I think it's about time that people are made aware of what EPILEPSY really is.

I had NO clue what it really was until I was diagnosed with it on Dec 2, 2006.  It has completely rearranged my life. Probably for the better. It has put things into perspective for me and has made me realize the important things in life...FAITH~FAMILY~FRIENDS. No...the journey was/is not easy...but God always promises to be with us.

If you haven't picked up a Newsweek magazine...

here's the link:

http://www.newsweek.com/id/193586

Take a moment and educate yourself about my disease...but NOT FOR LONG  ...

I'm believing for a MIRACLE!! It's been over 4 months that I have been seizure-free and soon I will be driving...and 4 months will turn into 4 years which in return is going to turn into 40 years...etc...etc.  Our God is a BIG God..and He wants to give us above and BEYOND all that we could ever ask or imagine!! So I'm believing for 400 years of being seizure-free.

What are you believing God for TODAY??  Keep believing...keep praying...keep asking..keep knocking...

I'm believing that door is going to open...

that door of HEALING!!!

Thank you for continuing to pray for us as we take ONE DAY AT A TIME...

 

 

 

 See, the former things have taken place,
       and new things I declare;
       before they spring into being
       I announce them to you." (Is: 42:9)

 "Forget the former things;
       do not dwell on the past.

forget...

do not dwell...

  See, I am doing a new thing!
       Now it springs up; do you not perceive it?
       I am making a way in the desert
       and streams in the wasteland.  (Is 43:18-19)

Ryan & I are claiming this over our lives...

That God is truly doing a NEW thing...

I am going on 4 months of being seizure free...

which means 2 more months I can drive!!  We are claiming HIS promises over our lives and beginning to DREAM again because we have a BIG God, AMEN?!

Ryan and I spent 2 wks ago at Washington D.C. for a weekend together...except it really wasn't a true weekend together. I had an MRI conference I had to attend to get my credits. (I need 24 credits every 2 yrs to keep my license). It was the week of the "Cherry Blossom Festival"...and we didn't even know it! How gorgeous to walk around after conference together and have God breathe NEW LIFE in to us! 

He is doing a NEW thing...how could we NOT preceive it?!!  The beautiful pink cherry blossom trees were blooming all around us!  God is so faithful and good. C0ntinue to keep pressing in and holding onto Him...it's going to be worth it ALL!! 

    

But for you who revere my name, the SUN of righteousness will rise with healing in its wings. And you will go out and leap like calves released from the stall. (Malachai 4:2)

My favorite flowers has always been gerbera daisies. I guess b/c they are bright and cheery and remind me of the SUN. There is no place I'd rather be than laying outside with the warm SUN on my face and skin. (by the beach would even be better ). I guess it makes me feel like the rays of the SUN are actually God's hands reaching out and touching me. It's a time when I feel most close to God. Those warm rays of sunshine are a kiss from the SON.

So, yesterday was a wonderful day. Thank you all for your comments of congratulations as Ryan & I celebrated 3 months of being seizure-free. What a milestone for us!

I was at work, in the middle of scanning a beautiful, sweet 90 year old patient (she actually looked like she was at least 10 yrs younger) , when all of a sudden, I got a delivery from "Royer's flower shoppe...for me!"  

They were gerbera daisies...none the less!! WOW! I was totally overwhelmed. My friends, Andy & Cheryl Hock, who are also walking through some hard health issues right now (when I say they...Cheryl is the one who can't get her migraines under control...but when you are married...you definitely are a team & walk through it together)... sent them to me.

When I opened up the card...It read, "3 months...Andy & Cheryl."  That pretty much sums up our milestone!   Thank you so much for your friendship & prayers as we continue to walk this journey together..."one day at a time..."  We love you guys!

 

...and countless colorful months to come!!  

So, once again, I am claiming to His promises...that the "SUN of righteousness is rising with HEALING in his wings" and He is going to free me from this disease of epilepsy so that I can go out and "leap like calves released from the stall". (in other words...I can be independent and DRIVE again, not have to be so dependent on everyone else to pick me up, or take me home, not have to take 50 million pills every day ( a little bit of an exaggeration...), get my energy back and be free to run and dance through the fields...the list is ENDLESS!!!

Remember...there is HOPE!

"Yet this I call to mind
       and therefore I have hope:

           Because of the LORD's great love we are not consumed, 
             for his compassions never fail".  (Lam 3:22)

Thank you for praying and standing with us. We continue to FEEL your prayers...so DON'T stop now!!

We love you guys~

Ryan & Jen