Tomorrow is my birthday

And I’m going to be in a car for most of it. In the past I used to get all worked up if my birthday wasn’t a “special day” where my family went out of their way to make me happy or surprise me. I used to think that I shouldn’t have to do any work on my birthday and that nothing bad should ever happen on my birthday. On my birthday, the world revolved around me.

Aw, who am I kidding? I still feel that way. I have to breathe deeply to make myself accept that tomorrow we will wake up, take the kids to my mom’s house and drive for 8 hours to Long Island, New York. We’ll be staying in the Variety House which is like a grown-up version of the Ronald McDonald houses. So no luxury sheets or HBO. Nothing really special at all – except dinner and I don’t know where we are eating. And honestly, I don’t feel like spending a lot to eat out because I feel like all our money is spoken for by unseen medical bills that are waiting to arrive in our mailbox.

I know. I’m super blessed to be going to The Chiari Institute and it IS worth a long trip to get a real diagnosis and answers and a treatment plan. I could just as easily have ended up with no diagnosis and being told to just learn to live with my pain. And I guess you could say it’s a nice “birthday present” to be going there.

But in truth, I’m still afraid. I’m afraid that Dr. B’ll say he was wrong and he can’t help. I’m afraid he will say he can help and that I’ll need brain surgery. I’m afraid that we’ll go home confused and angry – or confused and overwhelmed. Or both.

Do I trust God to give me peace? Do I trust Him to lead us in the right paths? Do I believe He is going with us? Yes. I do. I know that God knows my needs before I ask Him. I know He’s powerful and awesome and His will is to give me a hope and a future. But I also know that my human definition of “hope and future” are not necessarily the same as His. I know that the most faithful people are not guaranteed a life free from suffering – in fact Jesus said, “In this world you will have many troubles. But take heart, I have overcome the world.” He didn’t say that because He has overcome the world we will all be rich and fat and healthy for all our lives. His words give us a “hope and a future” simply because we know that we have eternal life and that no matter how crappy life is here, our life after death will be beyond perfect.

That means that there’s no guarantee that Dr. B can help me even if he thinks he can; that I won’t end up worse off than I am now someday. I’ve been in this place of blind trust before. It feels like I’m a little girl on a piggy back ride and my daddy is running so fast that I’m terrified so I’ve got my face buried in his shoulder blades and I’m clinging on for dear life. It’s a good thing my Daddy is the creator of the universe. Otherwise, I’d be in big trouble. And my Daddy knows what I want for my birthday – I guess I’ll have to wait to see if He thought it was what I needed or not.

So this it what it’s come to…

I was driving home from the grocery store today. At a stop light, I happened to turn and look out the window at a small car dealership. There before me, I saw a most horrendous thing. I’m almost ashamed to post it, it’s so awful.

I know the image is kind of small – so I’ll enlarge a portion of it.

There, just above the ugly red car with no hubcaps. Do you see it? No? Here, let me help a little more:

Your approved. YOUR approved. It actually hurts to type that. My heart is pounding. I might throw up. I must look away.

Yes, I’m one of those people who freaks out when someone writes or types “Their going to the store.” Or “That’s there car.” Or “They’re mom is not home.” So, naturally the misspelling of “your” and “you’re” is also enough to throw me into conniptions. Yet, I have some leniency when a person types it wrong – such as on Facebook or Twitter. People don’t generally proofread status updates and spell check only knows you spelled the word correctly, not if you correctly employed it in a sentence.

But this was painted. PAINTED. One letter at a time. He or she had plenty of time to see what they were spelling. And they even outlined the letters. Sure, “You’re” might not fit in the same space, but they already had to make that line more squished together as it is. I have half a mind to go over there in the middle of the night with a can of spray paint to add an apostrophe and a letter “e”. Of course, that would be vandalism and I’d get arrested if I got caught. I’d go down kicking and screaming, though. I’d shout at the top of my lungs “What’s an ‘approved’? How does one go about owning an ‘approved’?”

They’d probably lock me up in a loony bin after that. The six o’clock news would say, “A Canton woman was arrested last night for correcting a misspelled word on a local car dealership’s window. The police called it ‘vandalism’ even though she was just trying to do some good. She spent the night in the corner of a filthy jail cell, rocking back and forth and repeating ‘your and you’re’ in a sort of sing song voice. They finally called a psychiatrist who immediately sedated her and admitted her to an undisclosed mental institution. In other news…”

Honestly, people. I get that it’s kinda-sorta hard to proofread research papers or magazine articles. I understand typos and misspellings in Facebook and Twitter posts. The letters are itsy-bitsy. You’re in a hurry. You can skim over mistakes like a water bug on a lake. But when you’ve painted words that are two feet tall, please, please take the time to proofread – perhaps call a teacher to ask if you’ve gotten it write – er, right. You might just save some poor woman from ending up in an insane asylum.

Beautiful

Do you ever look at yourself in the mirror and think, “Gosh, I’m gorgeous.” Me neither. I mean there are days when I think I like my lips or my cheekbones or my eyes. But I’ve never let myself be pleased with the whole picture. It really makes me wonder if Tom sees the same thing I do – because he says I look good or pretty or, um, hot all the time. And I know he means it – he doesn’t say things flippantly.

Then I feel bad because if I don’t think I’m pretty, I’m insulting Tom – either calling him a liar or saying that he doesn’t have good taste. Funny how I can trust his opinion in everything else…

I get jealous when he talks about women he works with. I always ask how old they are, if they are married, if they are pretty. Sometimes (ok, a lot of times), I ask Tom if he wishes he could trade me in for a better model. Or ask for a refund. I tell him I wish I had a warranty – so that when my body breaks down, we could get it fixed for free. When I think about all the physical defects I have – vitiligo, scars from surgeries, really funky looking hyper-extended knees, chronic pain… the inability to do so many things – I ask Tom if he would have married me could he have  known (before he asked me) that I’d fall apart in so many ways. Dealing with a grouchy, invalid wife cannot be fun.

Yet he always says I’m perfect and that he’d only change things so that I wouldn’t hurt so much and so that I wouldn’t be limited by my body so much. I wish I felt that way. I fear that I am just a burden and not fun or lovely at all. I get so insecure that I almost feel like Tom would be better off without me. Thank God, when I tell him that, he pulls me close and tells me that he could never be happy without me.

He tells me I’m beautiful.

More about EDS and Chiari

My good friend Lori asked what would happen if I got the fusion surgery – if it would help. That’s the “neat” thing about the invasive traction – they keep you in it long enough to see if it makes your symptoms go away – if it does, then the fusion will do the same thing, only permanently. (Lift the skull from the neck a little). If the traction doesn’t relieve your symptoms, then they know fusion won’t help either.

As for the Chiari – some people have the malformation and no symptoms. They just watch and wait to see if symptoms come. If you have symptoms that are getting worse or interrupting your life (as I do, not just with headaches, but dizziness, brain fog, nausea…), they do the decompression surgery where they actually remove part of your skull to make the hole to your brain a little bigger. Often, they also “shrink” the herniation and then patch it up.

If you have Ehlers-Danlos Syndrome (EDS), a decompression might not work on its own and that’s why they test for cranial cervical instability. If your skull is “settling” onto your neck, a decompression won’t do much good.

In closing (hee hee), if I test positive for cranial instability and they do the fusion plus the decompression, the idea is that I would have relief from my symptoms. Chiari/EDS are life-long conditions, but for many, the surgery helps them get back a lot of their quality of life (and sometimes all of it). Believe me, the thought of having less pain is enough to make me a little giddy!

I am really excited to go to New York and see if I’m right about all this. If I’m not, I’m praying that he will still have something they can do other than just help me to learn to live with it. Of course, I think they would not have me see a surgeon if that were the case – they have “regular” neurologists there, too. Ahh well, I hope that makes sense. I’ve been reading so much about all this that I forget that just a few weeks ago, I had no idea about any of this!

 

About that elbow licking thing…

So yeah, apparently it’s not normal to be able to do that. Or to be able to bend your pinky past 90 degrees backwards. Or to pull your thumb to your wrist. Or all kinds of things I can do.

It can actually cause a Chiari malformation – when part of your brain herniates through the hole in the bottom of your skull. Some people have malformed bones and there’s not enough space for their brain – they are born with Chiari. Other people, like me, have loose ligaments that can’t support the head and neck. I’ve had doctors tell me, “I bet your loose joints doesn’t help your neck pain any.” But no one ever said it caused it. There’s a test (I think it’s the Brighton test) where if you can do 5/9 things (like standing with straight legs and touching your hands flat to the floor or having elbows and knees that hyper-extend more than 10 degrees), you’ve tested positive for Ehler-Danlos Syndrome. I’m not sure if there’s a genetic test to know for sure that is what I have, but without a question, I do have something wrong with my connective tissues because I’m 9/9.

Loose ligaments can’t be strengthened with physical therapy – I dislocated my kneecap a bunch of times and did a LOT of physical therapy only to end up with knee surgery where he cut my bone and moved a ligament and then screwed me back together because it could still slide out with barely any pressure. I had strong muscles, but it didn’t fix my loose ligaments. So that’s why all this physical therapy hasn’t helped my neck – it can’t tighten ligaments if my body was made with loose joints.

ALSO, for some people, loose joints causes something called cranial cervical instability – where your skull doesn’t sit properly on your neck and that can cause the brain to herniate through the hole in the skull – it’s called acquired Chiari. It’s hard to diagnose, though, because a normal MRI may not show any herniation or only a small one (which to normal doctors is not always considered Chiari even though many people have symptoms with small herniations). If you lay down, things go back to where they should go – and MRIs are typically always done laying down. When you sit up, if you have cranial cervical instability, things slip and slide and the herniation can be much worse.

So here’s my obvious theory: Since I tested positive for all the requirements for Ehlers-Danlos, I would say with great certainty that I have an acquired Chiari malformation. I sent out my MRI images and detailed medical history to both The Chiari Institute and The Chiari Center and both said they could help me and The Center actually said outright, “Thank you for submitting your records for our review.  Dr. Heffez has reviewed your records and has indicated that you do have Chiari I malformation.” (I’m sticking with TCI in New York because my friend has her daughter treated there and she loves them.) Normally, with TCI, you see a nurse and then a neurologist and then the surgeon, if necessary. On my paperwork, they crossed out all the parts with the neurologist – even in the insurance part – and highlighted the surgeon part. They also said they don’t need any more tests done.

My guess is that means he (Dr. B) knows everything he needs from my MRI – his nurse confirmed that – and my questionnaire (where I explained my double-jointedness) and that he’s going to recommend invasive cervical traction (which sounds terrifying) and then, if that proves that I have cranial instability, a cranial cervical fusion along with decompression surgery. My appointment is next Friday, so I’ll let you know if I’m right.

Please pray that I’ll stop stressing about all this, I know, how can I? After 13 years of pain, I might finally have an answer. Chiari isn’t a “good” diagnosis; it’s a life-long condition. But I already expected to have chronic pain my whole life because no one could figure out what was wrong with me. Having a name for what’s wrong is half the battle. But living with it is the rest of the battle. I’ll keep you posted and I so do appreciate your prayers!

Stop touching me!!!

Here’s another thing to make you feel horrible even though you’re not: When you want to shove your kids away because they won’t stop touching you. I tell you, it’s like they are trying to get back inside my belly some days. The couch is digging into my side because I’m pushed up against it so far by my little Nenny girl. We are both squished onto the same cushion – an amazing feet. Argh!!! I love snuggles, but some days, I’m just done!

When we get what we don’t deserve…

I’ve been wrestling with God. (You know Jacob, who became Israel, wrestled with God and ended up with a limp for the rest of his life. You’d think we’d learn from him…) There are times in my life when I’ve been downright mad at Him. Why can’t we have a baby? Why did our baby die? Why did Ethan have to have a pulmonary sequestration? Why did we lose another baby? Why do I have to deal with chronic neck pain? Why can’t we find answers?

But lately, as annoyed as I’ve been with these headaches, I haven’t really “called Him out” – if you can actually call God out. (I mean we say that God is responsible for things and act all indignant because despite our lack of being GOD we know better than He does. But golly, when the end comes – whose side do you want to be on? And don’t tell me there’s gonna be an awesome party in hell, because there ain’t – unless you call burning forever while in solitary confinement a party.) Instead, I’ve been kind of ignoring Him. I feel like a whiny little kid – “Why me?” and I just don’t want to hear His answer. I know He’s got a good one, but I don’t think I deserve this. Yet, what right do I have to say that I “deserve” anything? Lately, Ethan says he didn’t deserve to get punished or he did deserve a treat. I’m his mother, I know better than he does what he deserves. God is my Father…  Mature as I like to think I am, though, I’d rather just kinda get through my days right now because I don’t really care to know what reason He has for letting me go through this.

So I haven’t been reading my Bible. Not even a verse a day, which is my minimum goal. Even a frantically busy mom can read a verse a day. I haven’t done any studies or devotionals. I haven’t set aside time to pray. Yet, the few times I have prayed, I’ve asked for wisdom and guidance as to where I ought to go to find answers for my headaches/neck pain. Sort of a You scratch my back and I’ll scratch my back kind of deal, I guess. Considering my behavior of late, I deserve nothing at most, and really, He ought to be ignoring me back.

Usually, I justify my actions (or lack thereof) based on the lie that He is ignoring me by not healing me. Or something like that. But every Sunday, we take communion at church. And long ago, I promised myself I would never take communion without examining my heart first – just as Jesus told us to do. And every Sunday for weeks, God smacks the back of my head like Gibbs does to Tony on NCIS; He does it lovingly – the patient dad who’s tired of waiting for his kid to wake up and smell the proverbial coffee. I can’t eat the cracker (bread) without thinking of Jesus’ broken body or the juice (wine) without remembering His blood that opened the door so I could call God Father. And I feel ashamed.

How stupid I am to think that I should be doing anything other than clinging to God? How unreasonable to expect to survive any of this without going crazy unless I have the Peace of God coursing through me through His Spirit? Why is God so darned patient?

And the worst thing is, He’s answered my prayers. I have that appointment for the Cleveland Clinic, but I just didn’t feel like they were going to give me answers, just more bandaids. God put a dear friend in  my life (I mentioned her daughter in my blog a few times) who’s daughter has Chiari and she kind of nudged me along into seeing how many of my symptoms mirror Chiari. Locally, they told me “Someone would have seen that in your MRI.” Yet, the more I read, the more it seemed like the final piece in a puzzle I’ve been working on for nearly 13 years. So in desperation, I sent copies of my MRIs to two Chiari clinics along with some detailed health questionnaires. I wasn’t sure at all when I sent out those requests, if they would even listen to me. But BOTH places responded that they think I do have Chiari I and that they think they can help me. I have an appointment at The Chiari Institute in New York on July 1st. If God hadn’t put that friend into my life, I would never have even heard of a Chiari malformation. I’d just settle for letting them treat the symptoms without discovering the actual problem. And let me tell you, after 13 years, having a name for my issues is almost as good as finding a cure; it means I’m not a hypochondriac.

How can God be so good to me when I’m so stupid? And of course, He brings a verse to my mind:

Romans 5:8 “God shows His love for us in this: While we were still sinners Christ died for us.” If that doesn’t stab you through your heart it should. God is faithful even when we are unfaithful. How awesome is that?

 

If you can tell where my skull is (on the right-hand side, it's kind of a little teardrop shape laying on its side) my cerebellum goes below that and its' not supposed to.

“What can I do to help make your day better, Mama?”

Some days, I feel as though I’m just going to melt into a puddle on the floor when my kids, particularly Ethan, are so kind to me. Both girls give me back scratches and hugs and kisses. But Ethan has just taken kindness to a new level recently. If I’m frustrated, he says, “How can I help you, Mama?” And he does whatever I ask. Or he’ll see something that needs done and does it without being asked. He says, “I just know it will make you smile, Mama.” He gives toys to his sisters when they are crying, hoping it will help them feel better. He prays for me and listens most of the time, the first time – with no threats on my part. It’s times like those when I feel like maybe, just maybe, I’m doing something right.

Doesn’t the world revolve around me?

Babies are born with no sense of anything outside of themselves – other than what makes them happy and what makes them angry. It’s impossible for a baby to comprehend that having a poopy diaper isn’t the worst thing in the world. Even “big” kids have a hard time with empathy. All they can see is that they just enjoyed mini-golf a whole bunch and want to go again right away, who cares if it costs money? It makes them happy and that’s what they want.

In a perfect world we would all grow out of our selfish tendencies by the time we are adults. (I’d say teens, but we all know that teens are almost as bad as toddlers sometimes.) We would always be more concerned about those around us than ourselves. We’d never whine about not having anything to wear or eat because we would have an awareness of how amazingly blessed we are to actually be able to choose something to wear or eat rather than wondering where our next meal comes from or what we will do when our kids are too big for their clothes now.

Why is it so stinkin’ hard to see past our own noses? Why is it so easy to tell the kids “Not now” so you can play another round of Angry Birds or read another chapter? Shouldn’t it be easier to give clothes away (instead of selling them) when your kids grow out of them – at least if you have enough money to buy new clothes without having to sell the other clothes? Why does clinging to our wallets when someone in need asks for money come more naturally than opening it? Why do I want to spend an hour in the shower instead of being with my kids? Why is sacrifice so hard?

I want to tell myself that it’s ok to take a few minutes alone to do something for me – to spend a few dollars on me. And I think it is. But then I hear stories of people who’ve literally given everything they had to help someone – either as a missionary or a soldier or something else that requires a great deal of sacrifice – and it makes me feel so selfish. I want to complain for so many reasons. It’s so easy to yell at and spank the kids instead of searching for a soft answer and logical consequences. Then I think about how precious my kids are – how God entrusted them to me to help shape who they will become and the guilt is just crushing.

I guess like everything else, it’s about balance. God doesn’t obviously call everyone to pack up and go to a third world country as a missionary. Yet, He tells us that we are to be living sacrifices, to take up our cross every day. One day, maybe my “cross” is just being patient when everything in my nature screams to be impatient. Another day, I might need to put the computer down, or my book or whatever else I want to hide in instead of playing with my kids. Today, I needed to ignore my headache so I could fulfill a promise to my kids that I would swim in the kiddie pool with them.

I’m the first to admit, I stink at sacrifice. Most days, I act as if the world DOES revolve around me. That doesn’t mean I’m a failure, though. It means I’m human. And there’s a verse that always pops into my head when I realize how short I fall of any “good” standards: What a wretched man I am? Who will save me from this body of death? Thanks be to God who delivers us through Christ Jesus our Lord!

WHOOPIE!!!

Barns and Noble was listening!! They sent me an e-mail with a tracking number for my Nook – it was released early!! I can’t wait to get it!! The Nook is coming!! The Nook is coming!! Now I’ll know if I like it and can return it if I don’t and it will all be done BEFORE it was supposed to be released.

Ok, you can all go back to your regularly scheduled programming.