CUTting Through the Desert!

Well, it's been a few days since I've written anything. I really want to post exciting entries that keep counting down how many days I have gone without seizures. However, that just hasn't been happening. So, I will post anyway. I so appreciate (as does B) those of you that are continuing to lift us up in prayer. The road just seems to keep getting longer, right as we think we're nearing the end.

Speaking of things getting longer, my hair is not one of them. Over the last two years, I have been losing a bunch of hair. Apparently, one of the side effects of anti-seizure meds is hair loss. So, what that means is, I went from losing a bit more hair than usual to losing hand fulls of hair all day long once I started the meds. I spoke with the lady that cuts my hair (her fiance has seizures,too) and she said that by cutting my hair, I would lessen the weight and, hopefully, not lose as much. I took the big step yesterday. My hair is now super short (at least for me). It is right above my shoulders. Yikes! B has been precious and says he loves it. I'm still getting used to it. I'll try to post a picture sometime soon.

As I stated at the beginning of the post, we are ready for this season to end. However, part of my time in the Word this morning seemed very applicable to all that is going on...So, I have posted it below:


Desert Training
TGIF Today God Is First Volume 2, by Os Hillman
06-29-2008

"O God, you are my God, earnestly I seek you; my soul thirsts for you, my body longs for you, in a dry and weary land where there is no water" (Ps. 63:1).

The desert holds a special place in God's Word. The Scriptures portray the desert as a place of inspiration and exaltation - a place where people met God in a powerful new way. King David wrote the 63rd Psalm while in exile in the Desert of Judah. He was hiding from his son Absalom, who wanted to replace him as king of Israel.

For Joseph, a deep pit in the desert was the first stop on a 13-year journey through desolation and despair. That 13-year desert experience served to break Joseph's self-will and self-confidence. It taught him that he could not control anything and that he needed to rely on God to manage the events in his life. Joseph's desert trial prepared him by scorching the youthful pride and arrogance out of his young life so that when he was 30 years old he could rule Egypt at Pharaoh's side in a spirit of humility and servant-hood.

Before becoming king of Israel, David was a shepherd. Part of his training for leadership involved hand-to-claw combat with the beasts of the wilderness, including the lion and the bear. Elijah learned the principles of spiritual leadership while in the wilderness of Gilead. And Jesus was tempted and tested for 40 days in the desert before He began to preach.

Perhaps God has given you a dream, but now it seems that your dream has withered and died under the scorching desert sun. It seems that God has gone away and is not listening to your prayers. But I want you to know that that your dream still lives. God is with you, even if you can't see Him, hear Him or sense His presence. He is preparing you in the desert.

We pray that's what this time is...just preparation in the desert that also required a hair cut to cool off a bit!! We wish we knew what we were being prepared for (sorry Mrs. Greenwalt, I know I shouldn't end a sentence with a preposition). There are so many dreams that we have that have been placed on hold over the last two years. So, please pray that we would be able to sense Him and His hand in this time! Thank you all so much!!

Come Together

Well, for a change of pace.

A girl that I went to high school with is very talented and has a greeting card business. I'm not doing it any justice by calling it that. It's called Come Together Cards. Anyway, she actually did some cards for us when we were in the adoption process that you can find on her website. They say "Thank You" in Korean on the front and "Thank You" in English on the inside. I pasted it further down on the page so that you can see it. So, she is very talented and it's worth taking a look at her site to see if there is anything on there that would bless you.

www.cometogethercards.com

Her blog:

http://cometogethercards.blogspot.com/

If you order something, tell her that I sent you her way.

This is the card she made for us. Sorry it's a little blurry.









This is one of my favorites. In the cross, it says, "Who we are in Christ." Then, it has a bunch of scripture confirming who we are in Christ!!










Inside it says: God believes in you and so do I!

Praise!!

We found out today that B's brother is doing very well. He had his final surgery today and responded very well. He is also quite positive which is a welcomed change. This road has been so discouraging for him. His Mom had to leave to get back home. However, she left him in great spirits and feeling much better physically. They said they could hear his intestines, which is a good thing. Apparently, there are many times they stop responding due to the initial surgery. I'm really messing up this description. So, the easy version: this should mean success for the long surgical process he's been enduring.

Please continue to pray for his healing and that he would have someone to pick him up from the hospital when he is released!

Thank you!!

FIVE

Well, I want to post lots of encouragement. However, this morning has been rough. It isn't quite 9:30a and I've already had five seizures. So, I'm worn out and the day hasn't really even started for me.

It's easy to trust the Lord when all is going well. So, I am trying to also trust Him in the rough times:

4On the contrary, we speak as men approved by God to be entrusted with the gospel. We are not trying to please men but God, who tests our hearts.
1 Thes. 2:4

2Consider it pure joy, my brothers, whenever you face trials of many kinds, 3because you know that the testing of your faith develops perseverance. 4Perseverance must finish its work so that you may be mature and complete, not lacking anything. 5If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him. 6But when he asks, he must believe and not doubt, because he who doubts is like a wave of the sea, blown and tossed by the wind. 7That man should not think he will receive anything from the Lord; 8he is a double-minded man, unstable in all he does.

12Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him.

James 1:2-7, 12

10Since you have kept my command to endure patiently, I will also keep you from the hour of trial that is going to come upon the whole world to test those who live on the earth. 11I am coming soon. Hold on to what you have, so that no one will take your crown. 12Him who overcomes I will make a pillar in the temple of my God. Never again will he leave it. I will write on him the name of my God and the name of the city of my God, the new Jerusalem, which is coming down out of heaven from my God; and I will also write on him my new name.

Rev. 3:10-12

Wait Upon the Lord

Well, as mentioned in some previous posts, just because I wasn't having any didn't mean I wouldn't ever have another one. It was true...I have had three since my last one on Monday at the hospital. Obviously, it was fun not having any...However, God is still God, I am not. He sees the big picture that I can not see.

The prayer is still for none, ever again. However, I want to remain sold out to Him and walk in His will. This "plan" doesn't make sense, but I will wait upon the Lord.

In the morning, O LORD, you hear my voice; in the morning I lay my requests before you and wait in expectation. Psalm 5:3

Wait for the LORD; be strong and take heart and wait for the LORD. Psalm 27:14

We wait in hope for the LORD; he is our help and our shield. Psalm 33:20

I wait for you, O LORD; you will answer, O Lord my God. Psalm 38:15

I waited patiently for the LORD; he turned to me and heard my cry. Psalm 40:1

I wait for the LORD, my soul waits, and in his word I put my hope. Psalm 130:5

Yes, LORD, walking in the way of your laws, we wait for you; your name and renown are the desire of our hearts. Isaiah 26:8

Yet the LORD longs to be gracious to you; he rises to show you compassion. For the LORD is a God of justice. Blessed are all who wait for him! Isaiah 30:18

I say to myself, "The LORD is my portion; therefore I will wait for him." Lamentations 3:24

Therefore you do not lack any spiritual gift as you eagerly wait for our Lord Jesus Christ to be revealed. 1 Corinthians 1:7

"For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord. As the heavens are higher than the earth, so are my ways higher than your ways." Isaiah 55:8-9

Update

FOUR days seizure FREE!!! Praise the Lord!

Home Sweet Home & Showers!!

Well, I am home! Finally!!

It was so wonderful to sleep in my own bed last night and more importantly for my hubby. Such a gift for him to not be sleeping in an uncomfortable chair for eight nights just to show his wife his precious love!! It has been so nice to be home...I sure missed my sweet puppies. I've received so many sweet cuddles and kisses from them since last night.

The greatest challenge for me yesterday was after my spinal tap. Yucky!! Anyway, I had to lay perfectly flat for 12-24 hours. You know I couldn't handle that. However, they warn you that you will have the worst headache you've ever had if you don't lay flat. Something to do with the fact that by taking so much cerebrospinal fluid out creates a void (air bubble) that can move to your brain. Thus, causing a massive headache. They threatened that it is worse than the worst migraine. The only way to treat it is to apparently inject you with your own blood in your spine to try to fill that void? Anyway, it didn't sound fun...so, I tried to obey! I still had a pretty rough headache last night & didn't sleep much due to the pain, but I was in my own bed. The headache is almost completely gone! Thank you, Lord!

I must say that I became spoiled to my food being delivered each morning and not having to make any meals. I wasn't sure of what to eat this morning and didn't feel like preparing anything, but again, it is so wonderful to be home! Now, I have to figure out what to have for lunch! Grrr!!

Also, this could be too much information, but it was so great to finally get a shower. Last Monday was the last shower I was allowed to have due to the IVs in my hands and EEG leads on my head. I was able to "clean up" each day with warm towels. However, that doesn't compare to a shower. Let's just say B bought me some body spray (I must have been pretty stinky). At one point, they took the leads out for one of the scans that I had to have. My sweet hubby washed my hair in the sink in my room. Then (don't tell him I told you this), he actually braided my hair into two pigtails...didn't know he had that talent. All of the nurses were quite impressed and I just counted my blessings once again for such an amazing husband!

When, I was crying the other day to my Mom about the frustration of still having seizures despite all that we had been doing to treat them. She asked me two questions that changed my focus.
Mom: If Jesus asked you to carry His cross today, would you?
Me: (Trying to speak through tears of guilt) I hope so.
Mom: If you knew that you having seizures & feeling this way meant that H (the sweet little 5 year old girl with precious hugs I told you about the other day) didn't have to go through this, would you endure?
Me: Absolutely

So, perspective was helpful.

Now, what you've been waiting for (I think):

Seizure FREE for almost 48 hours!! Thank you, Jesus! It is such a blessing to finally have Him in control. As I said before, this doesn't mean that I won't ever have another one, but it means that He is finally able to do what He has wanted to...if you are holding on to anything, give it to HIM! It's fun to see Him work!!

What We Already Knew

He is GOD! Wow! Have we ever learned that...something we already knew.

You know that songs always get me/inspire me:

This morning, we heard Hillsong's, Mighty to Save:

Savior, He can move the mountains
My God is mighty to save
He is mighty to save
Forever, Author of Salvation
He rose and conquered the grave
Jesus conquered the grave

So take me as You find me
All my fears and failures
Fill my life again
I give my life to follow
Everything I believe in
Now I surrender

Shine your light
And let the whole world see
We're singing
For the glory of the risen King, Jesus

I surrender, Lord...that's what finally happened yesterday.

Have you ever read, "Fresh Wind, Fresh Fire," by Jim Cymbala? I have been reading it a little bit, here and there. I brought it with me to the hospital last week and didn't pick it up until yesterday...God's timing!! I was so frustrated, scared, and felt awful.

Just so you know, I have kept a very strict journal over the last two years of exactly how many "episodes" I have had, what I was doing, what meds I was taking, etc. So, every time the doctors wanted to change my meds, say we needed to do a different test, or whatever, I could pull out my spreadsheet and say, "no, we've done this or that and it only made it worse or this is the only time it has been better." It was allowing me to be in control. Then, I read this yesterday in Fresh Wind, Fresh Fire,

"God is not aloof.
He says continually through the centuries,
'I'll help you, I really will.
When you're ready to throw up your hands-throw them up to me'."

Wow, I've been trying to control this rather than let Him work. So, Ben and I discussed it and decided that I will no longer keep this log and just trust HIM!! I haven't had a seizure since 1p yesterday.

The next chapter that I read discussed how he knows the # of hairs on our head (that's tough to keep up with since I've lost so much since this started).
"And the very hairs on your head are all numbered." Matthew 10:30 (NLT)

So, my God, who can move mountains, can do this. I just need to let Him. I've always known HE could do it. I just never let Him. This doesn't mean I will never have another seizure, but it does mean, He is God and I am not.

Praise You In This Storm

I don't really know where to begin...that seems to be a common theme in my posts.

Since I've been admitted to the hospital, they've increased my meds, run every test in the world, etc., and I'm having more seizures. So, the doctors are basically stumped as to what could be causing these. They have determined for sure that they are left temporal lobe simple partial seizures and some are complex partial. However, they have also seen that two of my seizures have been in the right temporal lobe. In order to be a candidate for surgery, they need to have a very specific spot. Right now, they don't.

When I was first diagnosed, the doc said that the goal was no seizures. Well, with the first med they put me on, I was still having 1 or 2 each day. So, it was determined that wasn't working. Therefore, they added a new med to the one I was already taking. My seizures increased. So, they continued increasing the doses. My seizures kept increasing. That is when they decided to put me in the hospital. It is apparently quite dangerous to quickly stop a seizure med. So, they wanted me to be observed the entire time. They stopped the original med and increased the second with the idea of then adding another...The seizures have increased.

Therefore, the docs are looking for other possible causes. One possible cause they are going to try to rule out tonight is "paraneoplasia." I know, big word. Anyway, it means that I could have little bitty cancer cells in my body that just aren't showing up as tumors yet. My body is then trying to fight them and instead causes seizures. They also want to do a spinal tap tomorrow to rule out some other things. I couldn't handle needles for about ten years after my spinal tap when I was eleven. So, needless to say, I'm not thrilled about that.

When the doctor left, I was incredibly scared and cried my eyes out for a while. There are many times through this when I have wondered why I'm going through this, when it will end, if the Lord is really walking with me, etc. When we have access to the internet, we try to listen to the Christian radio station we loved in Houston, KSBJ. Well, the song that came on as I was crying my eyes out, in my amazing husband's arms, was Praise You In This Storm. Let's just say, the Lord knew what I needed to hear as the tears flowed. Take the time to listen the song and let it touch you as it has me...

We'll try to keep you updated as we learn more. Thank you for continuing to pray!!

Ictal Spect...

So we have gone on a new course today. After visiting with the doc he has decided to do another scan that might actually show us where the episodes are occurring. As M reported to you yesterday, the meds aren't exactly working and yet, we don't know exactly where the episodes are taking place in the brain, thus making M not a viable candidate for surgery. As we understand it, the Ictal Spect Scan may be able to provide for us more feedback as to where the episodes are taking place. The scan lasted about twenty minutes and we should get the results by this evening. Please pray that the scan will be able to provide us with the necessary info to make these go away.

B

Here we go...

Well, I'm back again...I must start by apologizing for misspellings and parts that just don't make any sense. They have me on some pretty strong meds that are affecting my ability to think, type, write, walk, etc. However, since there are so many of you faithfully praying, I want to attempt a post.

The basic update:

They gave me high IV doses of anti-seizure meds and anti-convulsants in hopes that they could decrease the seizures to ZERO for at least three days. Then, I would be titrated off of those and have oral meds added that would still keep them under control, then send me home. Well, the high doses were helpful to some degree. There were a few days that I only had one seizure. However, when they did the blood test, my levels of that med were too high and so they had to stop it. So, over the last few days, I have had more. We also found out that these auras that I've been having are also considered seizures. Basically, every full blown seizure that I have starts with an aura. However, there are many times during the day that I have auras that don't progress. The doc told us yesterday that those are still considered seizures...grrrr. So, he wanted me to keep track of those, too. I forgot to start counting until around lunch today, but I've had 13 of those. So, we need to make a lot more progress than we originally thought.

Today, the doc told us that if he can get the full blown seizures under control, he will be happy and I might just have to spend the rest of my life with the auras. First, we know our God is bigger than that. Second, we don't want to mess with His will if these are somehow part of it. So, we are trying to wait patiently and hear HIM. They have said I will still be admitted for a while longer to truly try to get these under control.

I have had a few special friends that have come to sit with me this week b/c I wasn't supposed to be left alone, get out of bed, walk, etc., due to the meds and Mom & B really needed to work. However, there haven't been many visitors. Today was crazy, though...fun crazy!! One of the dental assistants that used to work with B came up with her little girl and brought beautiful flowers and a big smiley face balloon.


Then, a few minutes later, one of our precious friends from church and her Daddy came to visit. This sweet little girl has the best hugs in the world. God uses her hugs to bring so much joy. So, I received some special hugs today. When her Dad asked her how many more hugs she had for me, she said, "Whoa, too many to count!" What a precious instrument of the Lord! Also, when asked what she thought of the 30 leads attached from my head, she said they looked, "silly!" I love the joy of children.

Then our friends we've mentioned before (he just got back from a year long tour in Iraq & his wife was a Rockstar raising their little girl here by herself) brought us lunch. They bought Freebird's-for all of you Aggies out there, you know what joy that brought to us! WHOOP!!

Please pray for us to bring God glory through all of this. It is hard to understand His plan and purpose, but we are trying to learn and pray that not only will our walks with Him become closer, but that yours will, as well!!

We'll try to update again soon.

WELCOME HOME!!!!

Great News!!! Many of you are aware that my brother T has been in a hospital as well. After a long battle with ulcerative colitis he is nearing the very end!!! T went to Louisville Univ Hosp. for the second of a three part surgery called the "J-pouch" procedure. Unfortunately things went downhill for T on May 1 and he has been in the hosp since then. My once 6'4", 265 lb bro is now weighing in at just 195 lbs. Wow!!! But praise the Lord he finally got to be discharged from the hosp last night and get some comfort at home. Please pray for his strength, family, and time that he will now have at home with wife J, and two boys, T and M.

B

Here we go again...(Very overdue update)

Greetings to all! Believe it or not, this is my very first time to post. What an honor to follow such a Godly woman like M after all she has done for me and our family over these last couple years. If you are new to our blog check out http://www.psalm112-survivor.blogspot.com/ to get caught up to date.


As many of you know, M has been struggling with her illness lately and the neuro is quite confused that we have not seen better results since beginning treatment. Thus, M has been admitted back into the hospital and is undergoing a new course of treatment. As most of you know, M was very nervous about coming back to the hospital as the dr. was going to put her on high doses of meds that would have her for the most part sedated to slow everything down. So far, we are four days into treatment and have seen okay results (instead of having 10 seizures per day, we are down to about 2 to 3), but after today's follow-up with the neuro we are not where he would like to be. Meaning, M is still battling her seizures and the neuro is quite surprised and even frustrated. Please continue to lift up M in prayer. Today was a very discouraging day as we felt we took quite a few steps backwards.

So, we are still in the hospital and probably will be for a few more days. I apologize that I have not visited the blog more often to provide updates. Thanks to all those who have been faithful in prayer and by phone to follow up. Your emails, texts, and calls are so encouraging. Please email M as she greatly looks forward to your encouragement and she is on her computer for most of the day.

All glory to God- B

Good Evening/Good Morning

Not sure as to which I should stay as I am up way too late. I'm having a hard time falling asleep. Tomorrow (today-Monday), depending on when you read this, I will be admitted back to the hospital. Basically, the doc says that with all the treatments I have undergone (3 anti-seizure meds), these should be long gone. So, he wants to be more agressive. My understanding is that he will medicate me so that I will be quite sleepy and loopy for a few days. Once I go about three days without any, they will start to back off on the sedation meds and increase the seizure meds. We want the docs to be wise, but it seems that everyone has their specialty and they don't want to crossover, work together, etc. Please pray for miracles there.

One of my biggest concerns is my Mom & B. They have both taken so much time out of work to be with me and they need a break. We think Mom will be with me throughout the day and B will spend the night, but they both still need real rest. So, once I check in tomorrow and get more of the game plan, we can figure out what will be necessary! Our sweet little puppies are going to need some good attention, too!

Thank you all for your prayers! We want this over and hope this is the pathway to get there. May God get all glory through this. We will try to keep the blog updated, but no telling what B might put. He is short, sweet, and to the point. So, hopefully, he will give you some info if I'm too sedated to write. Mom has also said that she might, as well!

God Bless You all and Good Morning!!

Hospital

Well, the doc called today to check in on me (what an awesome physician). Anyway, he said he was very unhappy with the # of seizures that I am still having and so he wants to admit me. He said he wanted to do it today.

B's parents get in town today and I told him it's not fair that everytime they go to see their kids, they have to go to the hospital. So, he is willing to let me wait until Monday, though he wasn't a fan of the idea.

So, as of now, the plan is that I will be admitted on Monday. Please also pray that we can find a new endocrinologist. We have been quite disappointed with the one that was assigned to me the first time I was admitted. We have a referral for a new one, but don't know if he will be available in time to get me on rounds this next week.

Thank you all for being such precious prayer warriors.

I'm going to try to teach B how to update the blogs for next week, since I will apparently be quite sedated.

Come on Already

I know I am so far behind on posting. It has been a rough few weeks. My seizures have increased, despite all the meds. This week, he increased one of my meds and added a new one. They are still increasing. He wants to put me in the hospital and basically sedate me for a few days, take me off most of the meds, and put me on an old school IV formulation of an anti-seizure med. The goal is that I won't have seizures for a few days. Once I go a few days, it's almost like a reboot/retraining of the brain. The hope is that my brain will get used to not having seizures and I will come out of it having none. I will still need to be on anti-seizure meds, but Lord willing, won't have anymore.

B's parents are coming in town this weekend and so it doesn't seem fair that every time they go to see their kids, they have to sit in the hospital. I told B he might get a little bit more Mexican food (I don't really like Tex-Mex and they love it) if I'm in the hospital while they are here, though. Since they are coming to town this weekend, the doc has said that we will wait until Monday, once they have gone home. If the seizures are still bad at that point, he will admit me and try this intense sedation method.

I don't want to go back into the hospital or have to be extremely sedated, but I want these to be over. I'm just so ready to feel like I can serve my husband, spend time with friends, even help clean the house, etc. I have tried to make a few meals for B over the last few days, but it's been salad, frozen pizzas, and Tyson any'tizers because none of them have me standing at the stove where something could boil over, cause a fire, etc., if I was to have a seizure. B has been wonderful about making dinner, doing the dishes, etc., most every night. He is so wonderful and special. I pray that all marriages could have husbands that love and serve their wives like he does for me. It amazes me daily.

I did receive a call from my manager yesterday that since I am now on Long Term Disability, I need to turn in my car, computer, etc. Also, if they feel the need to fill my position, they can and the hope is that when I can come back there will be a position nearby that I can fill quickly. This isn't especially common. So, please be in prayer for our wisdom, the company's choices, etc.

We are so grateful for the Lord and His provision through all of this craziness. Thank you all for petitioning Him on our behalf.

This is the scripture I am trying to cling to right now:

Wait for the LORD, be strong & take heart and wait for the LORD.

Psalm 27:14

I wait for the LORD, my sould waits, and in HIS Word, I put my hope.

Psalm 130:5

Now, faith is being sure of what we hope for and certain of what we do not see.

Hebrews 11:1