And He said unto me, "My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me."
2 Corinthians 12:9

Tuesday, July 29, 2008

REAL life

Many of you have asked me to continue to "be real" through all of this. That's a difficult request because I want to encourage people through these "struggles." There are times that I feel like being real about the way I feel isn't the least bit encouraging.

Today is one of those days. My manager should be here in about an hour or so to pick up my car. I know, I can't drive. So, who cares? I do!!! Looking out back and seeing a car in the driveway provides a drop or two of hope that life exists outside of this house. Though Texas law says that I'm not allowed to drive, there was always that idea that if there was an emergency, I was covered. Or, if I just had an urge to drive, I could at least drive around the block or something. I've never done that, but it was the fact that an option/freedom/independence seemed to exist. That is being removed today.

So, I have shed a bunch of tears last night & this morning. B keeps encouraging me that this is just a tangible representation of the job. I like the tangible, thus my overall struggle with "faith in things unseen." Mom keeps encouraging me that "if the mountain was smooth, we couldn't climb it." I've never had an urge to mountain climb & I wasn't really even a fan of the Rock Wall thing I climbed years ago. Does that allow me to continue to pout?

It just makes it so real that I can't go to work each day and that it's going to be a while before that can happen. If Texas law didn't require six months seizure free, I would try to be out in the field working today, despite continuing to have seizures every day. However, my job requires driving and so going back to work isn't an option right now.

I know it's cheesy, but I had to take pictures of the car before he gets here to take it. B took it yesterday to get it cleaned up and pretty!! He did a good job of making it shine!!



Got to have that Aggie sticker on the back!!

While I was outside, my sweet little Hank wanted to pose for some pics. So, here is something to smile about now that I've been discouraging.


Isn't he a cutie?!!

I just opened up to this and had to share:

2 Corinthians 4:1, 5-12, 15-18

Treasures in Jars of Clay

1Therefore, since through God's mercy we have this ministry, we do not lose heart. 5For we do not preach ourselves, but Jesus Christ as Lord, and ourselves as your servants for Jesus' sake. 6For God, who said, "Let light shine out of darkness,"made his light shine in our hearts to give us the light of the knowledge of the glory of God in the face of Christ.

7But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. 8We are hard pressed on every side, but not crushed; perplexed, but not in despair; 9persecuted, but not abandoned; struck down, but not destroyed. 10We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. 11For we who are alive are always being given over to death for Jesus' sake, so that his life may be revealed in our mortal body. 12So then, death is at work in us, but life is at work in you.

15All this is for your benefit, so that the grace that is reaching more and more people may cause thanksgiving to overflow to the glory of God.

16Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 17For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 18So we fix our eyes not on what is seen (emphasis mine), but on what is unseen. For what is seen is temporary (emphasis mine), but what is unseen is eternal.

2 Corinthians 5:1,5,7,9-21

Our Heavenly Dwelling

1Now we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven, not built by human hands. 5Now it is God who has made us for this very purpose and has given us the Spirit as a deposit, guaranteeing what is to come.

7We live by faith, not by sight. 9So we make it our goal to please him, whether we are at home in the body or away from it. 10For we must all appear before the judgment seat of Christ, that each one may receive what is due him for the things done while in the body, whether good or bad.

The Ministry of Reconciliation

11Since, then, we know what it is to fear the Lord, we try to persuade men. What we are is plain to God, and I hope it is also plain to your conscience. 12We are not trying to commend ourselves to you again, but are giving you an opportunity to take pride in us, so that you can answer those who take pride in what is seen rather than in what is in the heart. 13If we are out of our mind, it is for the sake of God; if we are in our right mind, it is for you. 14For Christ's love compels us, because we are convinced that one died for all, and therefore all died. 15And he died for all, that those who live should no longer live for themselves but for him who died for them and was raised again.

16So from now on we regard no one from a worldly point of view. Though we once regarded Christ in this way, we do so no longer. 17Therefore, if anyone is in Christ, he is a new creation; the old has gone, the new has come! 18All this is from God, who reconciled us to himself through Christ and gave us the ministry of reconciliation: 19that God was reconciling the world to himself in Christ, not counting men's sins against them. And he has committed to us the message of reconciliation. 20We are therefore Christ's ambassadors, as though God were making his appeal through us. We implore you on Christ's behalf: Be reconciled to God. 21God made him who had no sin to be sin for us, so that in him we might become the righteousness of God.

Saturday, July 26, 2008

Reba

I know I'm late on this post. Things have just been crazy since we got back from the meeting. Praise the Lord that B's Bible was found, though.


This is the couple that we spent time with throughout the conference and that we sat with at the concert. B works with him. He and his wife just got married a few months ago. Turns out that the dentist that she went to growing up, is the husband of my Mom's little sis in college. Random, huh? She was also in a sorority with a friend that was in our wedding and they worked at Sky Ranch (where I became a Christian) together.

We had so much fun at Reba. She puts on a great show! It was a bit of a bum deal because they wouldn't let you get out of your row/aisle to dance at all. So, no one even stood until the final song. Anyway, she was a wonderful performer.





Our seats were wonderful! As you can tell by the pictures. Can you see her pointing at us in the above picture? Ha ha!

Here we are enjoyin' Reba!!



More pictures!!



It's not a Reba concert without Fancy! Above is a pic, but below is a video!! Just hit pause on the playlist to the right so that you're not trying to watch the concert and listen to the music playing on the blog at the same time.

Friday, July 25, 2008

FOUND!!

Praise Jesus! The Bible has been found! We just received a call from the Hilton that his Bible was found. They said it might be a few days because they had to wait until the room wasn't occupied. They aren't allowed to go digging through drawers while someone is checked-in to the room. However, they pulled a few strings and were able to get in the room and it was there!

I called a friend at the Home Office for B's company to see if he would pick it up and ship it to us. He is out of town until next week. However, his assistant was precious. She told me how heartbroken she would be if she lost her Bible. So, she said she would head over there on her lunch break and pick it up and get it in the mail today!! Isn't that precious?

Take time to thank the Lord for Tara & Virginia today. Tara is the one that found it and Virginia is the one going to pick it up and ship it to us!! Yippee!!

Thursday, July 24, 2008

Prayer

I just sent this out in e-mail form to a few people. Then, I realized that we need to have people all over the world praying for this! So, will you all please say a quick prayer?

When B woke up this morning to have his quiet time, his Bible wasn't here. When we were leaving the conference this last week we packed everything in the room and checked every drawer before we left. So, all we can imagine is that someone might have taken his Bible while cleaning the room.

If someone took it, they probably need it more than B does. However, there are some very special things in his Bible. From notes about our dating and how the Lord revealed that I was "the one" to other special moments in his walk with the Lord, from struggles to victories. I would love to hear that the hotel finds it. We would love to send a new Bible to whoever it is that needs it, but would love to have his back. B is acting as though he is okay with it, but I can see the hurt in his eyes due to the special personal events recorded in it.

The hotel is searching for it now and is supposed to call us back. Please pray that they find it (and that we possibly know who needs a Bible and can send them God's precious Word).

Thank you for your prayers.

Tuesday, July 22, 2008

Northwestern

Wow!! That's all that I'm really able to say.

Right! Y'all know I'm never at a real loss for words. Especially now that I am at home all the time and don't get to speak with people all day, like I am used to doing. So, we are at the Annual Meeting for B's company. Wow! What an amazing experience this has been for us for so many different reasons.

1. We've needed an escape.
Life has been too "real" for us over the last two and a half years. With all of the health stuff we've both gone through, that B's brother has gone through, etc., we needed a break. Though this is a business meeting, it is still leaving our house for an extended period of time and not going to a hospital.
2. B needs a break from having to listen to me.
Me being stuck in the house all day must drive B crazy. When he gets home from work, I just start talking. He should get a chance to walk in, take his shoes off, relax for a few moments, etc. However, he walks in and I download the entire day on him. Again, those of you that know me, know that I love to talk (too much) and my job provided for that everyday. Nowadays, being on the phone wears me out. When he walks in, he gets a full day's worth of all the talking I want to do...So, I have been surrounded by many that are humoring me by letting me talk to them! ; )
3. I have learned about the amazing attributes of Northwestern
  • B works for Northwestern Mutual selling life insurance, disability, and long-term care. As I have told many people this week, "I know B's character, but it is so special to see the high values held by the company!" On a national level, they begin every business meeting with a prayer recognizing their need for guidance and a shepherd.
  • They don't pay for their reps to attend annual meeting. It is the choice of each rep as to whether or not they come to the meeting. Over 10.000 reps and family members are here this year. That speaks volumes to me about the commitment these reps have to the company they represent. Moreso, it speaks volumes to the concern the company has for its policyholders. The policyholders get a much larger dividend at the end of the year because expenses are kept so low!
  • For the last 25 years, Fortune has released an issue on the most respected companies within many different industries. Northwestern is the only company that has been ranked #1 in their class for all twenty five years. There was even a gentleman from Fortune that spoke to us today about how impressed he is with Northwestern. He also did the research to confirm that Northwestern is the only company to be consistently ranked Number One as most respected. If it tells you anything, this financial "expert" even has his policies with Northwestern.
4. This company is so family oriented.
Northwestern is also very family focused. They encourage reps to bring their families (and I mean their entire families-one of the families had six kids) to annual meeting. We have met babies that are three weeks old. We have met mothers, fathers, sisters, brothers, etc. The family is invited to each and every event. As crazy as this sounds, one of the most impressive things to me has been the role these fathers are playing in their childrens' lives. Almost every father that I've seen has been carrying his children. I know that sounds silly, but it has been so special to see the investment these men are encouraged to make and are investing in their families.
5. Great/Motivational speakers
There have been some amazing speakers. Rudy Giuliani being the best known of the speakers. However, the men and women within this organization that have spoken have been so inspiring. I found myself taking notes to apply to life in general, but to be able to take back with me when I return to work.
6. My problems don't seem that big.
Yes, I have had seizures since I've been here at the meeting. It's frustrating, but everyone has a battle they are fighting. We have been exposed to so many of them. A few examples:
  • As we were walking through the exhibit hall the other day, I saw a man with a scar across the top of his head. With the idea of upcoming brain surgery, I wanted to know his story. He had a tumor in his brain that was diagnosed as non-Hodgkins Lymphoma. During that time, he experienced many seizures, was unconscious for over three months in ICU, etc. He has now overcome that battle and won three awards this year.
  • One of the gentleman that was recognized for performance this year, was recently diagnosed with Cerebellar Degeneration. Through many surgeries, etc., this was his best year ever in the industry (he's been in the industry for over twenty years). So amazing!
  • Columbine: I'm sure that most of you remember the horrific acts at Columbine in 1999, the students that were killed & injured, and the image that is consistently played in videos of the attack, the young man falling out of the library window into the arms of the FBI agents that were standing on top of the Loomis-Fargo truck. Do you remember that? A young man in a white t-shirt, it appears as though he has lost his foot due to the shooting, it also seems that he is paralyzed, and he is covered in blood as he falls out of the window b/c this is his only chance at survival. This young man, that was shot in the head twice and paralyzed on his right side and was shot in the foot, is a rep for Northwestern!!! He told his full story for the first time ever. Though completely paralyzed on his right side, unable to walk, unable to talk, unable to read, unable to write, etc., he persevered and learned how to do each of those things again and walked across the stage the next year, graduating on time, with his class, as Valedictorian. He is now married to a beautiful young woman and had his best year ever with the company this past year.
So, I am going to try to do a better job of putting things in perspective. Each of these men has had severe trauma to their brains, had major brain surgery, and they are incredibly successful!
6. They truly give back to the community
This company is so focused on community service that they recognize the Top 25 reps in the company that have made an impact in their community by providing $10-25K in grant money to the organization in which each of these reps serve.
7. We got to go to the zoo
So much fun!! The night before the meeting started, Northwestern hosted a garden party at the Milwaukee Zoo. We had free access to the zoo the entire night and got to see all of the animals.

8. Finally...we get to see Reba tonight!!
There is a concert tonight...it's Reba McEntire! I'm so excited. Like a little kid. I hope that she sings some of the old classics that we grew up singing!!

Thursday, July 17, 2008

Doc Visit

The visit with the doc went okay. We were impressed with him. When all of this started in March 2006, I was very dizzy, nauseated, and started running into walls. Most of the docs that I've shared this with, smile and nod, and take their notes. However, this one wanted to know every last detail of what was meant by dizzy. He gave me multiple definitions and wouldn't progress until he had an exact answer. He wanted to know what my vision was like, type of stability, what direction I usually fell, etc. It was impressive to us that he didn't just gloss over everything.

He wants me to come back down to Houston and be admitted into the hospital there. It will be about 4-5 days in the Epilepsy Monitoring Unit (EMU). So for those of you that live in Houston, you'll have to come see how frightening I look with a million (okay, I'm being dramatic) leads all over my head! We are looking at next week or late August/early September. This is based on when he's on call. The unit is pretty full right now. So, the end of August seems most likely. They have some machines and the ability to run certain tests that do not exist in many other places (about 8 in the world). He believes this will give us a much deeper look at what is going on in my brain before approaching surgery as a viable option.

He agrees that since I haven't already responded to the first few meds, it's unlikely that I would respond to any others. On the same note, he agrees with the plan to titrate off of one of the meds I am currently taking. He wants me off of it completely. So, while we wait to see when I will be admitted, I will continue to gradually back off of that med. One of the questions that we had to answer while filling out all of the paperwork was, "how many seizures have you had in the last two months?" We pulled out my seizure calendar and started counting. The answer was a bit overwhelming. What is your guess?

The answer:
275!!

Was anyone close?

We had originally thought that if we were going to do a surgery, we would want to begin with the Vagus Nerve Stimulator (VNS) because it seemed less invasive. He said that it has a 50/50 chance of working. Working is defined as decreasing the seizures to some degree. Of those seeing an effect, it has about a 30% chance of taking your seizures to zero. So, the odds aren't that great. They tend to offer the VNS as an option if the resective surgery does not work.

On that note, they can't determine if the surgery will completely cure the seizures because many times the area surrounding the source of the seizures has learned how to seize. So, when that is removed, it doesn't mean the area around it won't trigger seizures. They have no way of knowing the end results of the surgery. Also, patients have to remain on anti-seizure meds even after the surgery. So, I wasn't thrilled with that. I want to be off these meds.

As far as being encouraged as to what my options are, that did not happen. As far as being encouraged that I am in good hands, that did happen. We were incredibly impressed with the doc. One of our concerns was that these guys are so specialized that they just recommend surgery for everyone. The couple that we had dinner with on Sunday called us to check in on Tuesday. They told us that this doc does everything he can to avoid surgery. We found a lot of comfort in that.

We also learned that the neurosurgeon doesn't completely shave a woman's head when he does the surgery. He just shaves the part he needs access to...since that is my left side and my part is on the right, my hope is that I could possibly cover it and not look too silly. I still think Mom and B need to shave their heads, though. Otherwise, I could go with a Cyndi Lauper look. Which is your favorite?

So, in the meantime, we are going to try to pursue some alternatives. We're not sure of exactly what those will be, but we are going to start looking into other choices. I had two really weird seizures this morning. I was shaking during both of them. That has never happened. It was almost like the way you would shiver if you were cold. However, I don't recall being cold during the seizure and when it was over, I was hot. I am usually very overheated during and after the seizure. So, it was weird and we've put a call into the doc to get their idea on what is going on...my prayer is that it was the Lord shaking the last few seizures out of me. What do you think?

A few prayers and praises:
  • Praise the Lord that I have such an amazing husband that is so devoted to me during this yucky time. He continually points me back to the Lord and His will.
  • My mother is so amazing. She would sacrifice anything and everything to get me better. She is doing so much research to find answers and she keeps encouraging my faith and trust in the Lord.
  • I am so blessed to have friends like you that are willing to check in on us and read all the way to the bottom of this post to see how you can pray and love on us. Thank you.
  • That this would all be about God's glory and have nothing to do with me.

Wednesday, July 16, 2008

Small Blessings

I am supposed to turn in my work car this week. Many times, the company will allow you to buy it at a reduced rate. With all of the driving B does for work, his truck doesn't seem like a great idea. So, we thought we could buy my work car to keep gas expenses lower.

We put in a request last week and finally got a call from them while in with the doc on Monday. The price was much higher than online quotes. So, we put in a call to clarify why the price was as such. The lady in charge is out of town for the rest of the week. However, her voice mail encourages you to call the Leasing company.

I called and spoke with a precious woman named Tisa. She asked for my vehicle #. I told her I needed to find the folder in the other room. I apologized for taking so long and told her I was a little disheveled as we had just gotten back from the doctor's office trying to determine if I needed brain surgery. The first words out of her mouth..."You've just got to have faith. Trust Him." I believe I followed it with an, "Amen, sister!" Those of you that know me well, know that putting all my trust in anything isn't me. My faith waivers. So, this was so precious to have someone I don't know encouraging me in my biggest weakness. She answered a few questions and began to transfer me to another department. Right before the transfer she said, "I will be believing for you." How absolutely amazing!! She may never know the impact that she had on my life today.

So, I called to find out about buying my work car and was reminded of all that Christ's blood bought for us!!

Thank you, Jesus!

Tuesday, July 15, 2008

Memories

Well, we got back from my appt. in Houston late Monday night. We had the opportunity to meet with a couple that has undergone the surgery the docs are suggesting for me. We had a wonderful conversation with them, but it was still hard to imagine the reality of having my scalp removed and then part of my brain removed forever.

Then, we stayed with one of my precious friends that was in our wedding. She is a PA for the surgeon that would do the procedure. So, she is very familiar with the process. She was even familiar with the girl we had dinner with and remembered her case and participating in the surgery.

However, the trip was difficult for me. There are a lot of things that I don't mind forgetting in Rockwall. I prefer to create new memories here. However, there are some precious moments in our life that occured in Houston. One of my dearest friends lives there. She has a son that is eight months old. I don't recall knowing that she had a baby and had no idea what he looked like (I have apparently met him prior to this visit and have seen pictures of him). The minute we arrived at her house, I lost it when I saw him. It broke my heart to not remember him. How could anyone forget a precious face like this.



I remember her little girls because I have pictures all over my house of them. However, they have grown so much. I wish I could participate in their lives. The oldest is now reading (she's not even in Kindergarten yet). I knew her Mommy before she was born and so it's amazing to see the changes in her life. The next one is a doll. She is turning into such a little lady. She had on a dress that I did remember. I have a picture of her older sister wearing it in our front yard when we lived in The Woodlands. However, her Mom said that her big sister had spent the night with us when we took that picture. I don't recall that at all. Again, so frustrating to not remember such special moments.

The oldest is so smart. She knows how to use my phone and camera better than I do. She took almost all of the pictures that are posted today. The minute I walked in, they wanted to see the doggies. Since they didn't come with us, I was showing them pictures on my cell phone. She figured out how to scroll through my pictures on her own.

She turned my phone to me at one point and asked me who was in the picture. It was me kissing my Granny on her cheek once her spirit was already with our precious Lord and Savior. I don't remember that moment. So, it was so precious to be reminded, but so hard to swallow that the memory had disappeared.

I have precious memories of sitting in the chair in Granny's room that night in the hospital with Granny (our last Friday night slumber party-we used to always have Fri. night slumber parties). I sang "Amazing Grace" and "It is Well" to my Granny as she lay in ICU the next day. The last words out of her mouth (though intubated) were "Amazing Grace." When I returned home, after she passed away, I was reading some of the poems she wrote. I opened to a special one:

Amazing Grace

Last night as I lay sleeping, I dreamed it was judgment day.

I stood before Christ my Savior for my sins I had to pay.

My mind was working overtime and I didn’t know where to start.

I knew I had to tell the truth and it had to come straight from the heart.

I looked into my Savior’s face, as He put His hand in mine.

He said “Child, your sins have been washed away, they have been left behind.”

I said “Oh, thank you, Jesus, you did that just for me?”

There was no spoken words from Jesus, only a vision of Christ on Calvary.

I had entered the gates of Heaven and I put a smile upon my face.

Now I could sing out loud that beautiful hymn “Amazing Grace”.

Well, I was only dreaming, but the dream I had was real.

I know I’m a child of God, that’s exactly how I feel.

I will be accepted when Christ puts out His hand.

He will lead me straight to Heaven and that promised land.

My message I leave to my family and friends, and the ones I love.

Live each day for Jesus and someday I’ll meet you in Heaven up above.

Love,

Rita, Mother, Granny, Aunt and Friend

February 11, 2006

Obviously, I have jumped way off track in the post here, but that was the memory that came to me when I saw that sweet picture of my Granny. Then, my sweet friend asked her little girl what song they've been singing from Granny's funeral. Her sweet little girl began to sing "Amazing Grace." So, it was a tearful and tough moment. After she sang, she went and got me a napkin for my tears. What a precious heart!

Then, some sweet friends of theirs, from Korea, came over...We knew this precious family while we were in Houston. However, once again, it broke my heart as I was reminded that we have a little Korean angel somewhere (whether born or not). I can avoid the memory here. However, seeing her son's precious Korean eyes and her beautiful pregnant belly, with another little Korean beauty on the way, was hard. I know the Lord has a plan in all of this. The trip to Houston just made it very hard to swallow. I want to remember my life and the precious moments the Lord has allowed, yet so many of them are missing.

Will you please pray for my memory, but even moreso, a peace in my heart about my health and the changes it is causing in our everyday life?

I have taken up way too much space in this post. So, I will do another post about the visit with the doctor later today.

Monday, July 14, 2008

Wedding Bliss

I guess I've been on a blogging hiatus.There has been so much going on and I haven't known what to write.

This last week has been crazy to say the least. It was a hard week as I had to turn in my work computer which made everything seem so real. This next week I will have to turn in my car and everything else for work. It just makes the yuckiness of all this sink in much more. Being able to go check work e-mails, look at sales numbers, etc., made me feel like I was still in the loop to some degree. Now that is all going to disappear until I'm seizure free for six months or until the Lord says otherwise.

B was in a wedding for one of the guys he works with this last weekend. The events started Thursday night and we didn't leave the reception Saturday until after midnight. I get frustrated when I'm having seizures that keep me from being able to truly participate, yet it was a nice weekend and nice to be out of the house . We had some special moments with the groom's family. The groom worked hard to make each person feel special and know why they were a part of his wedding and told others why each person was special to him. As we met many of them, they knew who B was within a few minutes of being introduced. We were incredibly humbled by many of them, as well. As we spoke with them, my seizures became a part of the conversation. We were shocked when quite a few said, "You are the one that has been having seizures? I have been praying for you for months." Wow!! How special to know that people from all over the U.S., even many we didn't know until this weekend, have been petitioning the Lord on our behalf! Also, it is special to know that, even while at work, he is surrounded by men that care enough to share our struggles with their families all over the U.S. so that they can lift us up in prayer, as well. We were so humbled.



Isn't he good looking?!!





We woke up the next morning, without much sleep, and drove to Houston for my doc appt. I'll update with those details soon.

Wednesday, July 9, 2008

Don't Speak Too Soon

Well, I learned a lesson yesterday:

Don't Speak Too Soon

Once I wrote yesterday's post about only having a few seizures a day (maybe 2-3), I had seven yesterday. This morning, before 7am, I have already had three. That makes it easy to get discouraged. So, please pray that I will still see the Lord's hand in this and recognize His will, since I have a tendency to get frustrated when I start to have more seizures.

The only real reason that we can see behind this is what they call a "honeymoon" period. We have found that any time we change the dose of my meds, I go a few days with 0-4 seizures. However, once I've made it to about the fourth or fifth day of the new dose, I start to have a bunch more. Then, I change the dose again (now that the doc is letting me decrease the dose by half a pill each week) and have fewer seizures for a few days. Then, the cycle begins again...So, tomorrow is the day that I decrease my dose again. Lord, please let the seizures decrease and stay low or gone!!!

Tuesday, July 8, 2008

Where to Start?

Well, I don't really know where to start this post.
  • Seizures have decreased a bit
  • I am titrating off one of the meds
  • I have an appt. with a specialist in Houston next week
  • B's great-grandmother celebrated her 100th b-day this last weekend.
  • Precious angel at B's office
Well, as you can see, I started making a list above. So, I'll go in that order.

*The seizures have decreased a bit. As you know, last Wed. I had ELEVEN! Yucky. The next day I had six. Since then, I have averaged around 2-3 each day. Thank you, Lord. The fewer I have, typically means that I have more energy. So, that is nice.

*I have been titrating off of one of the meds. I asked the doc if I could titrate down since I was still having quite a few seizures on the high doses. My question was why am I on such high doses of these meds if they're not helping? Let's at least back down a bit and see what happens. I am having fewer. So, hopefully, that change is helping.

*Through God's wonderful provision, I was able to get an appt. with a renowned epileptologist in Houston. B was able to have a conversation with a gentleman last week who's wife has had seizures since she was 17 (she's now 32). She was able to get in with this doc and had the surgery that I mentioned in the previous post. She's only had three seizures since the surgery.

Also, one of my dear friends (she was in our wedding) is a neurosurgery NP in Houston. She has been asking around trying to find the best option for us. She actually works with the neurosurgeon that performed the surgery on the video we posted. Anyway, she was able to pull some strings and I have an appt. on Monday with this epileptologist. Thank you, Jesus!

*B's great grandmother celebrated her 100th b-day this last weekend. Most of the family was able to go to her party. Due to all of the time B has taken off of work to be in the hospital with me, we weren't able to take time to drive to Ohio for her party. We're sad we missed it. However, she told B's dad that she's already looking forward to 101! So, hopefully we will be able to be there for that party!!

*Last, but definitely not least! There is a precious Angel in B's office. We want to send notes of gratitude, humility, etc., to this person, but they want to remain anonymous. So, if you are reading this, Wow, You amaze us!! This precious angel keeps sneaking into B's office and leaving cash to help us, but most importantly, they are leaving notes of encouragement. Typically, we want credit for our gifts to others. However, this person is so humble and just wants to bless us. It has truly humbled and blessed us and taught us a precious lesson!

May you all be blessed this week and find contentment in the Lord, as I am trying to do...if you have tips, I welcome them!

Thursday, July 3, 2008

Psalm 13

I guess I would say this is where I am today.
Psalm 13
You can click on the link above orthe text is below:
For the director of music. A psalm of David.
1 How long, O LORD ? Will you forget me forever?
How long will you hide your face from me?

2 How long must I wrestle with my thoughts
and every day have sorrow in my heart?
How long will my enemy triumph over me?

3 Look on me and answer, O LORD my God.
Give light to my eyes, or I will sleep in death;

4 my enemy will say, "I have overcome him,"
and my foes will rejoice when I fall.

5 But I trust in your unfailing love;
my heart rejoices in your salvation.

6 I will sing to the LORD,
for he has been good to me.

You can click on this link to hear Shane & Shane singing this scripture.

Through encouragement from others, I have had to ask myself some big questions over the last few days:
  • Are you okay if this never goes away?
  • Do you have the faith to wait on the Lord?
  • What is holding you back from contentment?
Before B and I started dating, we had each reached a point in our lives and walk with the Lord that we had decided that we were content being single. We weren't waiting for that person to come into our lives. We were just ready to serve the Lord and give HIM glory wherever HE sent us, whatever HE wanted us to be doing for HIM. Well, soon after we both reached that point of contentment, HE brought us together. We each fought it for a bit as we thought we were supposed to be single. Neither one of us had ever even considered dating the other, yet we had known each other for about three years. Then, we saw the Lord very specifically leading us to each other.

I was "encouraged" yesterday by a few people, that the Lord might get more glory out of me going through this battle than if I wasn't going through this battle...that's not the encouragement I wanted. "Your healing (really soon) will glorify HIM," was more what I was looking for on this road. However, B reminded me last night of our contentment in the Lord our last year at A&M and the blessings that flowed (I'm married to the most amazing man in the whole entire world).

So, I want to be content in this, it's just not that easy. I don't want to just "pretend" to be content, with the idea that it will make it go away. I honestly don't know how to get there. I am so tired from all of this and want it to be over so badly. So, the idea of being content with seizures every day (yesterday I had eleven) is hard for me to process.

Prayer Requests:
  • B's brother, T. Healing from his surgery.
  • B's brother, T. He has a condition in his eyes that requires a cornea transplant or he will be blind. However, someone felt the other day that the Lord was telling them that T will be healed of this and not require surgery. So, prayer for his complete healing.
  • That B will continue to glorify the Lord in his career. He is so amazing at what he does and strives so diligently to put the Lord first and it inspires me daily.
  • That the Lord will provide me with contentment that, obviously, can't come from my sinner's heart, but must come from HIM. May I open my heart for HIM to move in me and teach me.

Wednesday, July 2, 2008

Cabin Fever

As most of you know, Texas law keeps me from being allowed to drive until I've been seizure free for six months. I've already had three seizures this morning and it's not quite 9:30am. This is difficult for me, as I like to get out, be productive, see people, etc. So, B, Mom, and other friends have been trying to help me get out of the house a bit more. It's nice to see that life exists outside of the walls of our home.

My cousin's son has been in a baseball tournament this last week. His games have been within about 30 minutes of our house. So, although B would like to be in bed at 9p (he wakes up at 4:15 every morning), he has sacrificed that schedule to allow me to get out of the house a bit. We had a good time at the games this last week. My cousin's boyfriend has three kiddos. We got to meet them for the first time this weekend. When his youngest walked up, I saw those beautiful Asian eyes that just melt my heart, but her hair was so light and her skin so tan. She is from Kazakhstan. For those that aren't great at world geography (that would be Me!!), Kazakhstan is a country in Central Asia & Europe. It is bordered by Russia and China. Isn't she gorgeous? Here is picture of her:
She had fun using my camera during the game. Her daddy said I should hold on to the camera the entire time. So, she took a picture of B & me. I am up one row on the bleachers from B and looking up, trying to show her which button to push. So, though it's a hideous picture of me (of course, B is so handsome no matter what), here is the first pic of the new hairdo:


Also, one of our previous neighbors called me on Monday and said that she was taking her kids to the local nursing home to help wheel the residents down to lunch. She knew that I needed to get out of the house. So, I was able to go with her and her kiddos to love on the residents. It's amazing how quickly your eyes are opened to others' needs amidst a time of crying out to the Lord for answers. These residents were so thrilled to see young faces. It was such a joy and a moment to forget about my pity party of wanting a normal life. Here they are with one of the residents:

Finally, we are looking into other options and second and third and fourth opinions, with my seizures, before we make any decisions. However, in my last visit to the neurologist, he told us that he needs to change my diagnosis to "intractable seizures/refractory epilepsy" (not treatable with meds & might not ever go away). He originally thought that meds would do the trick and was quite shocked that they did not. We've played with many doses, meds, etc. So, the next two options he's offering me (other than playing with a million more meds, with much greater side effects) are surgical. One is a Vagus Nerve Stimulator. It is a little device they implant beneath the skin right under your collar bone. It's about half the size of a cell phone. It sends electrical impulses to the Vagus nerve all day long in hopes of correcting the electrical activity in the brain. It has about the same success rate as meds (70-80%), but often times works in patients that don't respond to meds. If you have a seizure while it is implanted, you run a little magnet over it and it's supposed to at least decrease the length of the seizure. He says I won't set off alarms at the airport!
; )

The other choice is a bit more frightening to me. It is a procedure where they remove your scalp, place electrodes directly on your brain to do brain mapping and get a much more accurate look at where your seizures are originating. Then, they take you back in for surgery, remove your scalp again, and remove that part of your brain (insert jokes about me not having my entire brain). I would probably have to shave my head for that one (B says he will shave his, too, if I have to do that!!). Wonder if we could get Mom to shave her head, as well!! For those of you that don't have a weak stomach, here is the link for a live version of the surgery done at Memorial Hermann in Houston:

Resective Surgery for Refractory Epilepsy

You just click on the link for the "live surgery." This patient's seizures are fairly similar to mine as mine are in the Left Temporal Lobe, as well. They believe mine start a bit deeper than the temporal lobe, but are unable to know for sure without a surgery such as this. It is a very long video. However, at the very beginning they show a quick look at the surgery and then the docs begin talking about it. If you like stuff like this, you can fast forward to about the seven and a half minute mark to actually see the beginning of the surgical part. Again, this is not for those with a weak stomach. Consider yourself warned!!!!

If you made it this far in the post, thanks for caring so much about the crazy details in our life and thank you all for your heartfelt prayers to our Lord and Savior that knows what is going on, despite us being so confused.