Saturday, December 27, 2008
We went to the Christmas Eve service that our church was having with New Caldonia. This is the church that we mentioned a few weeks ago that our church has begun a partnership with in the community. We had two joint services and learned about God's presence, rather than presents. Our old neighbors, the R family, joined us for the service, too. We had fun!! I think we are seeing more and more that certain sounds do trigger seizures. We usually sit in the very back of church, but that wasn't much of an option Christmas Eve. So, we were right next to the drums, tamborine, and organ. Therefore, I had a seizure during the service...It was definitely a special evening, though.
I didn't get any pics, but we went to my cousin's house for Christmas Eve. We then spent the night at Mom's house. Santa found us there. I had quite a few seizures Christmas Eve & Day. So, I was quite exhausted.
Hank & Rudder both got Aggie footballs from their Gamma. They hold on to their footballs a bit better than the Ags did this year, though!!
Rudder was scared of the sounds of all of the paper being torn and hid most of the time. This was his one venture in to the room to see what we were doing...
Hank, on the other hand, laid on the couch and watched everything we did throughout the day.
Once everyone left Mom's house, we went over to see Congressman Hall. This is his first Christmas without his precious wife of over sixty years. So, we got to spend some special time with him, just hangin' on his couch. B loves history and so B & Cgsmn Hall got to talk about WWII. They had some very special conversation time. I was incredibly lost, but so proud of my hubby. It was neat just listening to them talk about the different planes, aircraft carriers, battles, and even decisions that each president has had to make in war times.
I look frightening in this picture because I had just had two seizures in a row, about five minutes a part...
The last couple of days, I've had fewer, but we've also not done very much. We have slept in each day. When I get up and start moving around, I tend to have more...so, the relaxed schedule is helpful. Thanks for all your prayers!
Wednesday, December 24, 2008
Then, Monday hit...I had four seizures on Monday and started feeling yucky again. Then, Tuesday...worse. After I went so long without seizures after the surgery, I've started shaking during some of the seizures. This has never really been much of an issue, but has become one since the surgery. So, now I am shaking during some of them and they are lasting a bit longer.
I did get spoiled to the five days with no seizures. We are praying that after Christmas, we can get the doc to agree to let me do the injections again since it really did seem to make an impact. Pray for his willingness or his wisdom on why it would make such a difference, thus, giving us permanent treatment options.
So, I had four on Monday and eight yesterday. I went to work with B yesterday (up to his office, not to meet clients) and had one while in a meeting with their accounting/financial/commission statement guru (so it's clear that I don't know her exact title, but she's good at what she does!!). Anyway, I don't remember any part of the meeting. B said it was almost like I had two in a row because of the way I acted and how long it lasted. It annoys me to not remember important meetings like that because she sacrificed time out of her day to help me and then I have these silly seizures that just erase any recollection of what was going on prior to the seizure. It's so frustrating.
I have already had four this morning and it's not quite 10am. I had quite a few in my sleep last night. One of them was over four minutes long. Those are the scary ones and the ones that make me feel extra sick.
Obviously, I love the idea of miraculous healing and would love for that to happen and am quite open to it. I am also open to the docs coming up with a treatment plan that works. So, please be in prayer with us. It would be nice to have a seizure-free Christmas.
Merry Christmas Eve and have a wonderful Christmas reflecting on the miracle of a tiny baby coming to save you from all your sins!! Wow!! How cool is Jesus?!!!
Wednesday, December 17, 2008
Come to find out, a quick call from my doc's office to the insurance company would have given us that answer, but instead we went about it the long way searched for reimbursement codes instead. Since the doc's office would not order the med for me unless I paid them a huge chunk of money up front I just ordered it directly from the pharmacy and paid for it out of pocket (still very expensive, but less than what the doc was charging). Now, my insurance says they can not reimburse me for it since I purchased it from another pharmacy and not theirs. So, the lady I've been speaking with at my insurance company has been wonderful and is going to do all she can to help me get it reimbursed, though she says it is highly unlikely.
If we see results from this and the Epileptologists chooses to do this treatment regimen again, we know the right and wrong way to go about this....
My first dose will be at 8am Thursday morning and then another at 4pm.
I called the nurses in Houston to make sure we were getting the meds dosed correctly since this is the first time my doc's office has administered this. They recommend that they are only given with a pump, but my docs office doesn't have a pump. The nurses in Houston were nervous for me when I told them. So, please say a special prayer that the meds are administered properly. The NP at my docs office is an answer to prayer and a true blessing in our lives. She actually helped take care of Granny in her last days on earth and will be there in the morning and plans to make sure the nurses know how to administer the IV.
On to more fun topics. Two of my sweet friends and bridesmaids came out tonight for some hang time.
The bow was from S's pkg & you'll see makes an
appearance in each pic. It was the hit of the night!
We still have to figure out how to make the Beret
look right on my head...these guys were sitting
at the couch next to us and really wanted to be
in the picture.
Me & M, she was my maid of honor and we lived
together for quite a few years in Aggieland.
The purple matches my new retainers...yes,
my ortho made me purple sparkly retainers
(that's what happens when you've gone to school
with your ortho since Kindergarten)!!
Me & F, she was one of my bridesmaids. We led
Bible Studies together in Aggie Sisters for Christ
and worked with the Youth at First Baptist Bryan
most of our time in Aggieland.
Here are the three of us doing a quick hat and scarf fashion show before we left Starbucks....
Tuesday, December 16, 2008
We are trying to get insurance to approve this med and it apparently doesn't have an HCPCS J-code (has to do with insurance billing) code for 2008. So, the docs office will not order the med for me without me paying for it 100% out of pocket, which is more than if I go to my local pharmacy and pick it up on my own. So, let me know if you know anything about the insurance billing world and can help us to find the right codes for all of this silly-ness so that I can get these meds.
Saturday, December 13, 2008
However, since the seizures have started back up, they have been more intense. Therefore, the danger level is much greater, in case I am not able to turn off the oven, stove, etc. So, we're trying to honor their requests this time.
I did go all day Tuesday and Wednesday without any seizures which always feels great. My energy level really starts to increase and I start to feel like I can do things around the house. We went to the doc on Wednesday to find out about the IV. They said that they called the insurance company and they called the treatment experimental and wouldn't approve it. So, Mom called insurance company and they said the meds were just called in under the wrong code and if it is called in correctly, it should be approved. We spoke with the docs office and the lady that handles insurance should be back on Monday and will hopefully handle it then. We hope it gets approved quickly and can get ordered in time because the doc said he wants to do it on Wednesday. If we can't do it this week, we might have trouble getting it done the following week due to Christmas. So, let's pray the details get worked out appropriately.
Mom had won dinner for two at the local Hilton. So, she "made" my dinner Wednesday night.
When we woke up on Thursday, she helped me finish the small Christmas tree that I had put up the other night. When Mom was pregnant with me, she started collecting Wallace-Silversmith Sterling Silver Ball Bells each year at Christmas. This has made a beautiful tree, now that there are (uh-um) 30+ beautiful silver bells on the tree. However, since we put up the tiny tree and each ornament has to be polished, is heavy, etc., they stayed in the box this year. So, this year's tree is kind of a Southern version of a Charlie Brown Christmas Tree. It's all of our random ornaments, nativity scenes, etc. We got a tree up, though!! Thanks, Mom!
The seizures started back up on Thursday. B and I had a date night on Friday. We got to meet a special couple while at dinner. This sweet lady walked up to me and asked if I was the daughter of D (my Mom)! Yes, I am!! A women's philanthropic group that Mom used to be President of has been praying for us through all of this. She is one of the precious prayer warriors! It turned out to be one of those super small world situations. Her best friend and I actually used to work together at a clothing boutique when I was in high school. Then, we found out that her husband and one of the pastor's that married us were college roommates, etc., etc. There were many fun connections that we kept making and could have continued making, but their food was getting cold!! We are so grateful for their prayerful hearts and for all of you that are continuing to pray.
Today was a rough day as I had quite a few seizures (I think the count is at eight right now). So, we just relaxed around the house. However, just when I think my life is bad, all I have to do is look at my puppies and realize that it could be worse...
Tuesday, December 9, 2008
I have continued to have seizures each day. On average about five per day this month. However, I haven't had any yet today! Thank you, Lord!
Have you ever started the dishwasher or washing machine on your way to bed? You know that little wooshing sound that you hear in the background as you try to fall asleep? That is the noise that plays over and over again in my left ear. We assume it has something to do with the surgery. That is the side that experienced the most swelling. Thus, the side where I had to have the drain placed. So, any time it is quiet (i.e., trying to fall asleep, concentrate, etc.), I hear a dishwasher or washing machine in my ear. Grrr. The "dishwasher" makes it hard to sleep, hard to think, hard to function, but I'm learning.
Thus, grace. I'm going to ramble a bit here and then come back to my point on grace, I promise.
Saturday night, we had a wedding reception to go to...being an only child, my brothers and sister growing up were the kiddos of Mom's best friend. Her oldest, S, was in my class. Then, there was T and then, the youngest, the little bit of pink in the family, K. She got married in September. She had a destination wedding. We intended to be there. However, I was stuck in the hospital and so we weren't able to be there supporting her on that special day. So, no seizure was going to stand in the way of me being there for her reception.
We didn't get a pic with the bride and groom.
So, stop the music on our page (he's a musician and
the song playing on their page is beautiful) and
click on this link and see how precious they are...
Most of you know that the seizures have affected my memory and speech. However, something that I've not mentioned much of (because it embarrasses me, yet here I am about to post it on the world wide web) is how my ability to write has been affected. I can type because spell check will correct me, but handwriting is a big mess for me now. If there is any background noise while I try to write the word 'dog,' you might see 'drtgh,' on the paper. It is so frustrating. I wanted to write a note to K to tell her how much I love her and how proud I am of her, but I didn't want it to be full of scribbles. So, I spent most of the day, typing and retyping. Then, I sat down in what I thought was a quiet house to write the letter on paper from the computer screen. Dogs barked, the phone rang, life happened, and it was messy. So, when I handed the letter to her, I apologized to her and even showed her the front where I couldn't even spell her name correctly.
At this, she knelt down and asked me a question that no one has asked me before: "Do you give yourself grace in these moments?" Whoa. I wasn't ready for that question. The night before I tried to write a letter to B's boss thanking him for leading an office that has been so supportive and wonderful through all of this. Again, I typed it first and then tried to write it. I was in tears before I had written the second sentence because I felt so incapable. It is just so frustrating to feel like I can't accomplish such a basic task.
For those of you that have blessed us considerably with meals, love, prayers, etc., and are wondering where your thank you cards are, I hope this helps to explain the delay. They are coming, but I don't even write out my grocery lists anymore.
So, to go back and answer K's question: No, I do not give myself grace in those moments. I beat myself up something terrible. It's writing a simple word. C'mon. This should be easy. Why is it so difficult? I'm a grown woman, I should be able to write a thank you card without having to scratch out every third letter.
I want to make dinner for my hubby, but if I have a seizure and am unable to turn off the stove, I could seriously harm us, our house, our sweet puppies, etc. I want to clean the house, so that my hubby can come home to a pretty house after a long day of working hard for us, but standing for too long seems to trigger seizures and the sound of the vacuum is way too painful. I want to organize things, but I can't remember where we put things and so I just end up making more piles which is a bigger mess for B to clean up when he gets home. I want to go run errands and feel productive, but Texas law won't let me. I want to decorate our house for Christmas, but I had to give up on the idea of the big tree this year and settle for the little one. Then, I realized I couldn't remember how to wrap lights around branches. That has to be a basic task, but I couldn't make my hands and brain work together to do it. So, I eventually just stopped.
I want to feel like I'm making a difference and right now, I just don't. I feel like a bump on a log, sitting at home with two really cute puppies, waiting for the seizures to go away. So, no, I don't give myself grace in any of these moments. I either push myself too hard trying to do more than I should and causing more seizures or just making myself feel awful; or I emotionally beat myself up wanting to do so much more. I'm sure that I should give myself more grace, but I've not mastered the art yet.
2 Corinthians 12:8-10
Three times I pleaded with the Lord to take it away from me. But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.
I'm just not there yet.
On a bit more positive note: we have seen that each time I've received an IV dose of my meds, I've gone a while without seizures. I've been asking my doc in Houston for many months if we could try IV meds. He replied to all my other e-mails, but not that one. Saturday night, at the reception, we ran into my PCP and told him that we were trying to get my Epileptologist to agree to that. He said to let him know and he would try to make it happen in his office.
Sunday night, I had a bad seizure. Mom and B were both here. When it was over, I went to the computer to type it in (we keep a record of all of them). When I was done, I checked my e-mail and had one from my Epi doc agreeing to allow me to start IV treatment. I started screaming, "Praise the Lord" and crying. Mom and B kept saying, "Yes, but why?" I couldn't speak through the tears to tell them. Finally, B came in and read the e-mail and shared the news with Mom. We all rejoiced!
I just got an e-mail from my Epi doc that he has spoken with my PCP and we should be able to start IV treatment this week if all goes well. I have an appt. with my PCP tomorrow and so we should get all of the details then. Praise the Lord! Thank you for all of your prayers!!
2 Corinthians 1:2-7
Grace and peace to you from God our Father and the Lord Jesus Christ. Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows. If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer. And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort.
Monday, December 8, 2008
Thank you, Jesus, for the gift of healing you have bestowed upon him!
Praise the LORD.
Blessed is the man who fears the LORD,
who finds great delight in his commands.
Surely he will never be shaken;
a righteous man will be remembered forever.
He will have no fear of bad news;
his heart is steadfast, trusting in the LORD.
Saturday, December 6, 2008
Once he left, I took a shower and that took most of my energy. I had to lay on the bed for another thirty minutes or so to get the energy to walk out front to get the mail. Once I got the mail and started to walk back toward the front door a beautiful Golden Retriever came running toward Hank, Rudder, & me. I realized I couldn't get all three dogs to sit nicely in the front yard while I went inside to get a phone. One of the neighbors, two doors down, was getting her mail, I started calling out to her to see if she would bring a phone. That triggered a seizure. So, here I am, super wet hair from the shower, very cold outside, surrounded by three dogs (all sniffing each others' rear ends-you know that's what they do) and I've got to find a place to sit quickly, and neighbor never heard me call for her.
My sweet Hank actually came up on the porch and put his head on my shoulder like he was protecting me. The Golden Retriever came up to me and Hank wasn't going to let anyone near his Momma. It was the sweetest, though very painful experience, as Hank started growling at and then attacking the Golden for coming near his Momma during her seizure.
Now, you might need to close your eyes to have as much "fun" as I was. I am so sensitive to sound with the seizures. Since the surgery, the sound sensitivity is even more intense. So, I'm laying on the porch, having a seizure, Hank is now growling at & attacking the Golden, Rudder is in a corner scared, and I'm trying to get the dogs to at least stop making noises because it hurts so much. I can't speak during the seizures. So, I'm trying to clap to get their attention, but I don't have much muscle control, so that is difficult and the sound hurts. I try tapping the ground, they can't hear that. Anyway, Tom Bergerron (sp?) would be paying us big if we had caught it on tape.
Once the seizure was over, I decided all dogs were going to the backyard (the only way I could create a controlled environment). So, I opened the front door and they all ran straight to the back door. Praise the Lord!!
This is a pic of Dakota, the Golden, who lives just a street behind us, but had been missing all night. Poor little guy.
Then, Mom stopped by to bring over a few tops for me to look at since B's work Christmas party was last night. She and I tried to go look for some stuff on Thursday, but it was one seizure after the other and way too loud in each store. Once she arrived, her grandpuppies put on their best, our life is so awful routine:
We made it to a couch, but it was still super loud. One of the precious ladies at B's office that is always checkin' on me and prayin' for me came to find me and said she had found a room that was even quieter. On our way to that room, I had a seizure. However, once we made it to the said room, she was right, it was much more quiet. I think it was literally the furthest corner in the house. I just kind of hid there most of the night. I felt rude not getting to see most of the people there. However, each time I got up and moved toward the noise, it seemed to trigger a seizure. So, that room became my safe place.
My head is also very tender from all the incisions. So, giving and receiving hugs is still tough. I'm trying to learn how to give a good hug without letting my head touch people and me yelping in their ears. It just seems tacky. Each outing is a learning experience. We didn't get many pictures this time out because I was having so many seizures and just felt yucky, but we got this as we were leaving their house. We put on our best, it's not way past our bedtime and we haven't had a ton of seizures today, smiles...how did we do? I think we look quite delirious.
Friday, December 5, 2008
You can click on "view all designs."
Choose the card you want to send
Enter your name and the message
Then, Xerox will send your message to the troops!
This is also a great teachable moment for your kiddos!!!
Thursday, December 4, 2008
Before we left for Philly, our church had a picnic with another local church called New Caldonia. They are an all black church and liked the idea of hangin' out with some white folk!! The fun part is that our church and many of the families in our church are new to the area, but I've grown up with many of the families at New Caldonia. So, it was special to get to introduce many of our new friends to many of my old friends.
This is me getting more cuddles from Miss H at the picnic.
This is Mrs. A. I grew up with her son and love her like a Momma. She is so precious! I kept looking for her and asking for her and no one had seen her. Then, out came B from inside the church (he was learning all about the history of it-he so loves history!!) with Mrs. A!!!
Then, we went to Philly. We had a few days of rest before B's brother and kiddos arrived. Here they are attacking their Mimi as soon as they got in the front door.
The final pics are from tonight. Our town had its 25th Annual Christmas Tree Lighting. It's wonderful to live in a town where at a city sponsored event they are singing Christmas Carols and you can hear Jesus' name proclaimed over and over again!! Wow!
One of our dear friends, A, was the emcee for the event tonight. I wanted to take a pic of her to show Mom. Well, she saw me before I snapped the pic and was already saying hi to me in front of everyone! Again, the beauty of a small town, but not what you're looking for in front of so many people!
Tuesday, December 2, 2008
We are home from Philly. We spent the week with B's family. It was a wonderful and crazy time. We had some special time with his grandparents (it's been about two years since we've seen them)! Praise the Lord, we enjoyed memories made with them, stories they told, and the family history learned. We also got to make some memories with B's nephews. We even got to watch his oldest nephew pull his tooth!!!
On Friday, I wore that sweater I mentioned in the last post and broke out in a rash again...so, the doc is allowing me to switch back to the other med I was on as of today. We are going to have to watch very closely, though. I did have a few seizures while we were there and there are a few factors that we are looking into with the docs as of now to see how they might apply.
I just wanted to quickly check in with each of you since you have all been so faithful to call, e-mail, etc., and check on us. Thank you!!!