something to smile about

Lately I've been giving 3-sentence updates about everything going on and it's been awhile since I've posted details about much of anything. Some of it's because I'm lazy and/or rushed and don't want to take the time to spell it all out, and the other reason is because if I'm talking about anything even slightly emotional or hard, listing the details puts me into self-pity mode, which we all know is bad news. On the other hand, most of the people who read this blog come here not because I'm a great writer (God must have forgotten to give me that talent), but because they want specific updates.

Here's the thing, though. I don't want to sound depressed, because I'm not. I don't want to sound hopeless, because there is Hope. I don't want to sound angry, because (most of the time) I'm not.
If I try to scoot away from coming across as bitter and morose, I don't want you to think I have it all together either. I don't want you to think I'm always happy and care-free, or that I'm unemotional and can't feel anything (though that would be nice). I'm no fighter, but I'm fighting. Lovers of Patty Griffin should appreciate that last line. Ok, updates....

I think I'm currently at a stand-still with my doctors. I can't figure them out. They all think I'm fascinating, which you'd think would make them want to put their heads together and come up with a game plan. Instead, I'm pretty sure they're content to point and stare and parade their residents in and out to look at me. I got the low-down from one resident I met for the first time a few weeks ago:
Me-- Hi, I'm Cathryn.
Dr--Haha, you don't have to introduce yourself, I know who you are. You're a legend around here, you know.
Me--I don't even want to know if that's a good thing or a bad thing.
Dr--Yeah, I've only been here for a couple of months, but they're all talking about you.
Me--Oh that's good, so they're talking about treatment options?
Dr--Oh no, they're just talking about you.
---------------------------------------------------------------

The diagnosis is still Chiari. Curious as to why no one will talk to me about fixing it, I did some researching. I've figured out that basically the only known fix is brain surgery. And since most of us know what happened to Jeremiah when he had that surgery, it's not an option.
I have another set of MRIs coming up where they will look more specifically at the bottom half of my brain. I recently had a 3hour long test of my optic nerves. The good news is, the nerves haven't been damaged, they're being sat on by my brain. That means if my brain goes back to normal, those nerves should be unharmed. Which means I'll still be able to see and hear.
My neurologist thinks that exercising (which hurts like nothing else) and steroids will help. My anesthesiologist thinks that narcotics are going to be my best friends for the rest of my life. My unfortunate psychologist thinks I need to think more positively and smile more often. The docs in ENT, of all places, think that I'm way too young to settle for drugs for the rest of my life and they want to find a way to fix the actual problem. Shocking, I know.

Those are the facts.
Here's the honesty.

I'm really tired. I feel like I'm 90 years old and like I'll never feel good again. The pain has gotten much worse in the last 2 weeks and it's wearing me down. When I hear that there's no alternative to brain surgery, I get panicky. I start freaking out that it's never going to go away and there's no way I can handle this forever.
That lasts for about two days and then somebody will be around to wake me up and wind me down. It's usually Dad, and then other times it's Mom or one of my sisters. Sometimes it's Dirk's sermon or one of the amazing people at COG. The most recent attack of panic was calmed by some dear friends who have been in our lives since before I was born. You can go to Mom's blog to read more about their visit. I didn't grow up around them (though I wish I had) so I don't really know them all that well. But I love them like I love my own grandparents because I know how much they mean to my parents and A-team. Several times during their weekend visit they came up to me and would just lovingly remind me to not give up and to try to visualize just how many people around the country are praying for me and what an honor that is. That really put things back into perspective for me and helped me breathe again.

I may have said this before, but this always comes to mind when I think about all the people who are committed to praying for us. This is an uphill battle and sometimes when my family and I think we can go no further, the Lord reminds us that we have hundreds of people holding us up in prayer. It always reminds me of when the Israelites were fighting a war and God told Moses that as long as he kept his arms raised, they would be winning. If he let his arms down, the enemy would take over. Just when Moses was getting too tired to hold his arms up anymore, two of his friends came up beside him and held his arms high in the air until the Israelites had defeated the enemy.

So thanks to all the great people in my life, I'm back to (as one of the above docs suggests) thinking positively and smiling more. I have much to smile about, so I try to keep those things in mind. The world isn't falling apart, and God is still God. Now that's something to smile about.

sisters and rain

I'm blogging twice in a week?? Oh my gosh!
The girls ditched me for their friends this evening, so there's nothing better to do...

Well, Beth is graduating in 4 days. I think I'm more nervous than she is! I'm so excited and happy for her and really can't wait to see what she'll be up to this next year. But the other half of me wants to talk mom into forcing Beth to do another year of school here. Maybe because I hate that everyone's growing up.
If you've been around long enough, you know I have a real inertia problem. (Who did I get that from? Annie?) It's one of my biggest downfalls...the thing that sets me back the most. I really hate change and often wonder why God let the sun stand still for Joshua but not for me. It's good that God put so many people, especially children in the form of siblings and nieces and nephews, into my life because I don't get stuck standing still for long. The kids are changing and growing every day and it helps me to remember that God didn't create us to be stagnant beings. He created us to walk, to keep moving, to enjoy life He's given us but not to cling to it.
This week, with the Beth's graduation moving closer, in the midst of being happy for her and helping her plan, I've been longing for the time when we were smaller (especially when we were shopping for dresses, haha!) and all of us were together all the time. There is nothing I love more on this earth than my family, and I'm so like my dad and wish we all could live on the same 10 acres for the rest of our lives. I've been longing for the time when we were all in Mom's school together, our days were semi-predictable, and there was no danger of one of us leaving or moving away. (That's why I moved back in :) Life was simple.
When I get into one of those nostalgic moods, I always snap out of it by seeing an example of why the changes are amazing and there is no way I'd want to go back. One of those reminders was last night, I think, when I was out shopping with my sisters. The three of us went with Em and Michelle (our adopted sisters) to shop for dresses for the graduation. When I first saw Shelley in the dressing room in a gorgeous dress, I wanted to stop and tell her to go to the girls' department and pick out a cute little girl's dress. Because I didn't want her to be this old. (Shelley, you're so OLD!) But I got over it because she really did look beautiful and she wouldn't look like that if she was still 5 years old. We continued shopping and we were all giving each other suggestions and opinions and what looked best and what made us look skinny. ;) And I loved it. We couldn't do that when we were 5.
When we got back home, we all ended up in my room talking and soon Caleb joined us. We sat there and talked for a couple of hours of things that I didn't talk to them about a year or two ago. They are all growing up and it's a good feeling to become less of a mom and more of a best friend.
Except for Emily and Michelle, who are my sisters anyway, I lost most of my friends after I got sick. Each one for different reasons, but a few months ago they were all gone. I treasure the friendship with my sisters even more now and I'm so glad they're not 10 anymore, because I need them.
I was reading a verse this morning that kind of woke me up. It's from Ecclesiastes and it says, "Ask not, 'Why were the former days better than these?' For it is not from wisdom that you ask this."
I guess that doesn't need any explanation, so...on to a lighter note.

If you've never been to Covenant of Grace Church, now is the time to visit. Dirk just became my hero because he's finally preaching through Genesis. I was ecstatic a few months ago when he first started talking about it, and I think I was his biggest cheerleader while he was making the decision. I just love the Old Testament...not because I don't love the NT's theology and Good News, but because I love history and love reading about how we began. I think the best examples of God's infinite patience and faithfulness are in the OT and it gives me great comfort to read them. Anyway...Come to COG and hear about Creation. Or, just go online and listen to the sermons because they're gonna be great. covenantofgracechurchsa.org

I noticed a few hours ago that there are paint chips taped to every wall downstairs. I can't believe Mom finally made some decisions. They were probably the biggest decisions of her life, and I sure hope she doesn't regret them in a few weeks. I'm not sure about that red focal wall, Mom. ;) No, I'm kidding. It's gonna look fabulous and everyone should come see when Dirk's finished.

I've been feeling good for a few days and am SO thankful. It's been a nice break from the usual "I want to scream but instead I'll smile" days, and I'm enjoying it. Some of you asked about the doctors not wanting to treat the Chiari problem. I'll save that for another post but for now, they are just 30 year old guys who don't want to be wrong, so they want to treat me for the things they thought I had.

Is this the first year that San Antonio has ever been pretty? It's gorgeous down here and I don't want the rain to stop. Everything is so green..it sort of feels like driving through Virginia. Well, you know what I mean. Anyway...hurray for no drought this summer!

updates

Ok, here's the update.
None of my doctors think I have a CSF leak anymore. To any other person, I think this would be good news, but when they told me that, I was pretty upset. The pain and other problems hadn't gone away, so I thought the leaks had to still be there but that they were just tired of trying to find them. They told us they were convinced something was still wrong, but they really didn't think it was a leak. So they sent me back to have another MRI.

Last week, since they still weren't letting me drive, Dad took me to my neurology appointment where we saw the MRI results. We were looking at the pictures and I knew immediately something wasn't right. My untrained eye couldn't point it out, but something didn't look right. My doctor said that it was a Chiari Malformation. I knew this term because it's what some of my doctors had suspected from the beginning, but could never find any evidence of it. I won't go into great detail (that's what Google is for), but a CM is basically when the brain drops and rests on the skull instead of floating in the CSF like it should. It can happen from low CSF pressure, or it can be present from birth as some sort of defect. They say if you have it when you're a baby, you won't notice any symptoms until you're into early adulthood. The pictures showed that my brain is in fact sitting on the bottom of my skull, my brain stem is inside of my spinal canal, and the bottom of my brain is being severely compressed which is what causes the severe head and neck pain. (I hope you're not eating right now)

Anyway, to any other person, this would have been bad news. I was pretty excited though. In 2 years, it's the first concrete evidence that I'm not making all this up. And for the first time my doctors can actually see exactly what's wrong so hopefully, they can come up with a better treatment plan.
Some of the doctors don't want to treat this, so I'm going to have to put up a fight about it.

That's the nutshell. I'll let y'all know when they decide to do something...

around the house in 80 seconds

Right now around the House:
Aubrey is forcing Sam to inhale some steroids through his...inhaler.
Jonathan and Caleb are fighting over the "real way to play Clue."
Beth is being her usual crafty self and making a huge poster.
Abby is eagerly waiting her turn to get her hands in Beth's paint.
Shelley is singing lines from "Cats", "Phantom of the Opera", and "Wizard of Oz", all at the same time. (A shocker, I know.)
Mom is a little upset with Dad for bringing home Chocolate and Key Lime pies, instead of Coconut Creme.
I, on the other hand, am very happy with Dad for holding off on the Coconut.
Isaac is convinced that he is the Real Jack Sparrow.
Tim has just learned that there are alot of people in the world (most of them in SA) who don't think babies are blessings from God. He is horrified.
Shelley is begging Aubrey and I to watch "Phantom of the Opera in 15 minutes" online with her.
We told her that we're busy, but she insists it will only take 30 minutes of our time.
Dad is pondering this.
Mom is satisfied with an ice cream sandwich.
Aubrey is pulling her hair out because she's heard one too many lines from "Cats" today.
Sam is running around in his diaper begging to take a a shower in Granny's room.
Tim and Josh want to know the names of the people who don't love new babies so they can go "beat them up."
David just wants to teach them about Jesus.
Beth is still involved in her project and has just yelled a warning into the living room. "Aubrey, Sam has a green hand and he's coming into the living room!"
Somebody yells something about taking a picture.
The boys are talking about setting someone's hair on fire...
I'm gonna go watch.

Princess Bride

Ok, here's a story for you.
In my first couple of months working at K2K, our boss, Ken, attended a series of conferences that took him out of state. He'd been gone for the better part of 2 weeks and the day before he came back, one of the girls decided to change the screen saver marquee on his computer from "Do it now!" to "Girls rock!" He came back to work the next day and was not happy about his new screen saver. He said something about how he hates when people mess with his computer and that the girls should get their own computers. Fearing for our lives (or our jobs) none of us touched his screen saver ever again.
Fast forward about 3 months.
I was in my new store, my new computers had just arrived, we set them up, and I set my user controls and such to how I wanted them. For my screen saver, I put a line up from "The Princess Bride". If you know our family, you know we can and frequently quote and act out the entire movie by heart. I came to work the next morning, turned on my computers, and what did I see? My screen saver had been changed. To a different line from Princess Bride. I called Ken to give him a hard time and said that he should be grateful that I don't get mad when people mess with my computers. I promptly changed my screen saver to a different, funnier line from the movie. The next morning, same story. This was war.
So for 6 weeks this went on, every time he came to my store, he'd change the screen saver, and then I'd try to outdo him the next day.
After 6 weeks, I put up the last line I could think of that we hadn't used yet. It wasn't very funny, but hey, it was the scraps. Before Ken changed it again, he called me to say he hoped I wouldn't get mad when I saw his "quote to end all quotes."
I came to work the next morning, and this is what I saw...




I'm pretty sure I lost.

only You can be both the Builder and the Wrecking ball

I'm sorry I never posted an update after all the appointments and tests. We got a little bit of new info after seeing my new doctor, but he want to say too much until after I had another set of MRIs. My dr thinks I'm going partially deaf from all the brain damage, so I'm having my hearing tested on Tuesday, MRIs will happen on Thursday, then I have a series of appointments with all of my doctors at which time I hope they will all stop fighting and agree on a new plan.

My new neurologist is nice enough but I'm still not sure why they assigned a resident to my case. He didn't seem to agree with my old doctors about what's wrong with me, so instead he wants to treat me for another, more common disease. Like I said, he didn't say alot because he didn't have the MRIs yet, but here's the gist of what he told us. He said that if he's right, he could have the pain decreased by 50% in 6 months. Unfortunately, even if he is right, the pain is the only thing that will get better. He said because of what all the other doctors, tests, and drugs have done to my brain and the rest of my body, everything else is going to be impossible to fix.

So that's one doctor. All of my other doctors think that he's wrong. They don't want me to be on some of the new drugs he gave me, and they basically just want to go a whole different route. So that's what the next 2 weeks are about--getting everyone on the same page.

As for the seizures, the EEGs came back clean. No epilepsy, so that's a great thing. All of the doctors are fairly convinced that all the seizures were provoked by one of the drugs I was on. They have taken me off of that and so far, I haven't had anymore seizures. Still can't drive though...

The store is getting busier and we're starting to make more money. (!) Being busy means there's more to do and more to keep up with so it is taking a toll on me. The pain has significantly increased in the last 2 weeks, so I'm having to pace myself a little bit better. I'm so thankful though that I'm able to work and that I have the strength to be there everyday. It's definitely a huge blessing to act like a normal person again.

You're up to date. This has been boring, I know, but I must get back to work so I'll post about more exciting things later.

caffeine

so i had the first set of eeg tests today. the docs said that during the tests they would try to induce a few seizures to see what my brain was doing. the tech that was running the test was from india and didn't speak alot of english, but kept saying "don't be afraid. you will not know anything is happening." nice.
so the techs think they got their seizures, but they said only the doctors would be able to tell me for sure. here's the fun part: the next set of testing begins tomorrow morning at 7. and until i'm there, i'm not allowed to sleep. so we're staying awake the entire night. i say "we" because i'm forcing shelley and beth to stay up with me, and aubrey volunteered to come over and keep us company. so we bought lots of caffeine and sugar to keep us wired, and i think we're going to watch the second season of "house". it should be fun! but we really really wish kristen and annie were here. then it would be twice as fun.
so whoever has any of our cell phone numbers (and who happen to be awake in the middle of the night) can give us a call to encourage us to keep our eyes open.
and pray for the tests tomorrow. although it would be ideal to not have any more seizures and to be rid of all sickness, we're praying they find something specific in these tests to know exactly what is going on. we'll update when we know something. thanks for all your prayers!