ryan, sandy and louboutins

When an actor or actress – you know what, let’s just skip the whole PC deal and go with actress. Let’s start over…..

Now correct me if I’m wrong here. Academy Awards + Nominated Actress = (maybe) an Oscar. Right?  I always get confused, Grammy’s, People’s Choice, Emmys, Tonys, Dundees, SAG, MTV Music and then Movie Awards, the Razzies, who wins what? I mean how can a girl keep it all straight, right? Oops… rabbit trail….. sorry.

Well, to begin, lets just all admit that the most interesting part of the evening is the red carpet. I love to hear the interviews; oooh and ahhh or ugh and scrunchy nose and raised eyebrows at the haute couture – from the gorgeous to the ridiculous, and the ones who tried the just rolled out of bed look - sans stylist - and consequently failed entirely. Thus the scrunchy noses and raised eyebrows.

Next is our game. Charles and I have devised this little game. As they pan the crowd, we wait till they pause on someone in particular and the first to yell or scream out that person’s name, wins! You can imagine, as we sit on the floor in our pj’s, that it can get a little wild and crazy; popcorn flying through the air, glasses of milk getting knocked over! We also try to pick out fillers and dissect who is sitting by who and what that may or may not mean. It is like a frat party on acid. Feel free to come join the fun next awards season. J

Onto the main event. We watch as an actress from a movie wins whatever it is they win, as they walk up to the front, taking bets on who will trip over their incredibly too long dress, as they accept their award, and then as they walk to the podium to begin THE SPEECH, we bet on who is already too drunk to give an articulate speech and who is going to lean way over to talk into the shotgun condenser mic – if I know that they can just stand up and speak, why don’t they? As they thank everyone who got them to the place they are now standing, we are just waiting to see if they make it through their entire speech before the music begins and they are awkwardly ushered off the stage.

Now, let’s just use our imaginations. Ryan Seacrest is interviewing me in my stunning vintage Chanel dress, Bulgari jewels and Louboutin shoes. I look BAA-NAN-AAAS! (Rachel Zoe was my stylist.) I make my way down the red carpet and sit right beside Sandra Bullock. Ryan Reynolds just a few seats away. Remember, I said, use your imaginations.

I watch as the amazing Julia Roberts and Tom Hanks make their way onto the stage. In awe I listen as their voices say my name. Best Actress for the movie The Color Lyme. Time begins to move in slow motion. I don’t trip on my way up the stairs, Phew! My palms are sweaty as Julia Roberts (WOW!!!!) hands me the Oscar. And now comes THE SPEECH. Now, I know some people write out their speech and read it, but I’m going off the cuff here.  My heart is beating out of my chest as I take a deep breath and we’re off to the races. “I have just two people to thank - Sandra Bullock and Ryan Reynolds. One of the things that kept me going through all this was a movie that to this day makes me laugh out loud. The Proposal, which I had seen before, but while I was sick it filled my heart in an entirely new way. It still doesn’t matter how many times I watch it, I laugh out loud. Big, hearty, true, from the heart laughter that rolls up from the pit of my stomach and out my mouth before I can stop it. I hadn’t laughed like that for years. During that time, I watched it at least once a day, if not 2 or three. On a bad day, back to back to back. My favorite part, well there’s too many to pick just one. I love when Mr. Gilbertson sings “Buh, buh, buh, buh, buh, buh, buh, buh, buuuh”; and when Andrew looks like a deer in headlights as Margaret announces their engagement to the big bosses; and when Andrew says “boop, boop, boop” when he pats her on the bum; and, of course, when they run into each other naked. They say that laughter is good medicine. Well, if that is true, then I guess I have three people to thank. God, Sandra Bullock and Ryan Reynolds, oh wait, don’t forget Betty White. Oops, I guess that’s four.J” Cue music as I smile and wave and graciously make my way off the stage in my Louboutins (a girl can dream,) to hug my best friends, Sandy and Ryan.

seizurcise

I just discovered that I really, really, really don’t like seizures. I mean they were so enjoyable the first few times, but they are getting kinda old now. At first to pass the time we tried to do crossword puzzles – obviously that didn’t work out so well, sharp object + seizure = no good! Movies seemed like a great idea also, but it became quite challenging as soon as my “strobe effect” kicked in. Oh wait, you don’t know all the cool names yet, do you?

Charles and I are starting to use the time during my seizures to name the different movements. “Strobe effect” is code for my eyelids fluttering super fast. We call the one where I’m whipping my head around “head-banger;” and when it comes to my arms, there is “stirring the pot,” “drum-roll,” “djembe expert” and “Guitar Hero” (one of Charles’ personal favs). We call the one where my legs go crazy, “spinning,” which if you are a gym-ite you will recognize the term as one for a bicycling class.  My favorite “spinning with crunches,” that one is about as enjoyable as plucking my eyes out. There is another gruesome one that is a diabolical combo of biceps, triceps, abs and spinning – “The Myndi Special.” I know those of you who took my Spinervals classes are saying I’m finally getting a taste of my own medicine, and you are right. J

Charles and I have turned our madness into such an incredible idea. Since this seizure activity is so strenuous and burns so many calories – we’ve decided to turn it into an exercise video. It will be called “Seizurcise – Lose weight in only 3 vigorous 60 minute workouts a day! Your very own Lyme infected tick included.” “For only 7 easy payments of $9.99 - You can just lay back in bed and watch the weight fall off. Just attach the enclosed tick to your body, let it suck your blood and then just watch and see what happens.” Fine Print: may cause other symptoms, including, but not limited to, silliness and sarcasm, crazy ideas such as making lists of lists of lists (maybe that is just my OCD) and wonderful ideas like exercise videos that may just change your life. J

brooke cleaver...oops, I mean fox

A little worldview adjustment. No more family dinners for now. For some strange reason they cause a seizure every time. Hmmm, we’ll delve into that in a moment. But, in the grand scheme of things, it is such a small event to sacrifice to the bigger picture of getting well.        

Now, don’t get me wrong, we (unfortunately) aren’t the Cleaver’s. If we all sit down at the same time it is a miracle. And, if it is anything like your house, it is mass chaos. One child refuses to eat anything but cottage cheese (????), the other was going to eat everything until I put pepper on it – which by the way, she asked me to do. One is teasing the other, “what mom, I promise I didn’t do anything!” while the other is literally screaming at the top of her lungs, mommy, mommy, mommy, mommy! in increasingly louder decibels as I try to have some semblance of a conversation with my husband. So, let’s delve: It is a stress filled environment that I keep trying to control. Hmmm…….and I was wondering why it causes a seizure…….

But we do try to play a game while we eat called “3 Favorite Things.” We go around the table and each of us shares our 3 favorite parts of our day. To listen to Finley as she tries to tell us what happened in her day, or the day, or the week before, because it all runs together for her; and to watch as Robyn rolls her eyes and reluctantly tells us what she really does want to share with us but won’t admit it. To hear snippets from Charles’ day that I want desperately to know more about. And to let my children and husband know that I love them and that they are the best parts of my day.  Now, that is a lot to sacrifice.

So, a little worldview adjustment. No more family dinners for now. In the grand scheme of things, it is just a small event to sacrifice to the bigger picture of getting well. But “3 Favorite Things,” I’m not willing to adjust my worldview that much.  That is a part of my life, dinner or no dinner, sick or well. Come hell or highwater, we are playing our game.

the update

The update. Hmmm what is the update.  It’s funny. I hear everyone explaining it, calling people, making doctors appointments, trying to get in touch with home health, ordering meds, picking up prescriptions, making food, taking care of my kiddos, washing my clothes, cleaning my kitchen; all while I am stashed away in my bedroom. I feel like the world is swirling by around me and I am missing all the action.

Don’t get me wrong here, someone cooking for me, cleaning for me, washing clothes and watching the kids is absolutely remarkable! But it is my job. It is what I love to do – well, except for the whole cooking thing – but for the most part, it is where I feel alive, it is my nitch, my job, my joy. 

So the update. Hmmm. Okay,the trip went well. At the airport, girls in the bathroom laughed at me because they thought I was drunk. I cried, until I realized that I do look pretty drunk when I try to walk. So I may as well laugh! J No seizure on the plane, WooHoo!!! Huge answered prayer. Yay for every little victory!

I loved getting to see our friends Klon and Tracy, who graciously let us stay in their house. I love my nurse Christina, who hugged me when I cried and made sure I was as comfy as possible. I loved meeting Dr. Jemsek, although he definitely isn’t warm and fuzzy, he is direct and to the point, he has made a plan designed just for me; he cares that I get better and he is going to do all he can to make sure that happens. I’d rather have that trait in a doctor than warm and fuzzy any day.

I had a test run with the first antibiotic I will be taking and I had no allergic reactions – Yay! Yay! Yay! That was the first big hurdle. My only reaction was to curl up with a pillow and a blanket and fall asleep. Yummy, yummy, yummy sleep.

It was encouraging for me to learn from Dr. Jemsek that my “episodes” or “muscle spasms” are actually one of the most common seizures. They are called Limbic Seizures, and obviously originate in my brain. They are actually much scarier for the person watching me, than for me. I cognitively feel fine, at the same time I look like…hmm….well, Robyn says I look like a peacock. Not sure if that is an accurate description, but I guess it looks pretty kooky.

It was grody to the max to learn that the lyme spirochetes have taken over my entire brain and body and they are just slithering away in there, drilling through vessels and organs, having a big blow out PAR-TAY! You know the type – the parents are out of town, and the entire Spirochete High School has been invited over. Someone was able to get their hands on a couple of kegs, the music is shaking not only the whole house, but the neighbors' houses as well! Spirochetes are jumping off the roof into the pool, and one of the poor dorky spirochetes is puking in the toilet. Fun times at Spirochete High!

Apparently, The Immune System Police Department is this tiny little police department down in Brooketown, USA. They are understaffed and overwhelmed. They have one police car and two policemen. (Think Andy Griffith and Barney Fife) They can’t keep up with the spirochetes vandalizing the neighborhood convenience store or the ones spraying graffiti on the windows of the brand new Cinema up town; much less stop this party in midtown.

It’s time to send in the cavalry. Martial law will be in effect. Now, the spirochetes are obviously not going to be very happy about this, in fact it is likely to cause quite an uprising, maybe even a coup. It’s not going to be a pretty battle. Things will get a lot worse before they get better. So that means more outrageous parties, more vandalism, more graffiti and gunfights in the streets. But here’s the deal, in the end, the cavalry WILL win. It may take 4 months, it may take 8 months, it may even be a year.  But there will be a new sheriff in town. The Immune System Police Department in Brooketown will be big and brand new.  Well staffed and able to handle any little spirochete that might try and hang around. And Brooke will be Brooke again. Yay! Yay! Yay! Yay! We will win! And God will never let go of my hand, not one single step of the way. And that, my friends, is the update.

"intravenous" the musical

Well, surgery is over, port is placed. The tubes are kinda freaking Robyn out, but mostly because she is concerned about it hurting me, or if she’s going to accidentally touch it and hurt me. I found an entry in her journal the other day that said, “I love mommy the most becose she is the sickest in are famley.” Heartbreaking, right? She is so empathetic and sweet. Of course, then she turns around and screams at me because I told her to wear the wrong pair of shoes. But that is life with children. Can I get an “Amen!” in the house?

“I'm leavin’ on a jet plane, don’t know when I”ll be back again, Oh baby, I hate to go…” A little Peter, Paul and Mary with your morning coffee. Okay, I am leaving, but I don’t think it will be a jet, and I do know when I’m coming home. And, hmmm, well no, I don’t hate to go. So I guess the song is moot. Well, at least I got it stuck in your head for the rest of the day. You can thank me later.

Charles and I are flying to Washington DC late tonight. My momma is here – “Hallelujah!” *hear the strains of Händel’s Hallelujah Chorus ringing in your ears* She is watching the kiddos until we get back on Wednesday. Very short trip. I just have to see Dr. Jemsek and have my first dose of IV antibiotics while they watch me closely to make sure I stay alive. Ladies and Gents tune your stations to Sunny 106.5 for a walk down memory lane – a little Bee Gees for you, “Ahh, ahh, ahh, ahh, Stayin’ Alive, Stayin’ Alive! Ahh, ahh, ahh, ahh, Stayin’ Ali-i-i-ive!”  Okay, so assuming I do stay alive, after my appointment, I will return home Wednesday morning and continue IV antibiotic therapy here.

At this point, I am really okay. I’m not scared, although after watching “Under Our Skin” maybe I should be. Herx reactions are no joke – but I think I’m ready for it. I’m really just ready to beat this. “Beat it, beat it, beat it, beat it, no one wants to be defeated!” (Or the less well known lyrics by budding musicians Brooke and Mindy Shepherd “no one wants to eat a feet it!”) You didn’t think I could end this little musical montage without a little Michael, now did you?

So, I’d love to see you all. I know, I know. I’m an invalid, I have crazy tubes coming out of me, I’m not wearing makeup and my hair’s not done, I may be puking or having a seizure - surely there’s a Dolly Parton song somewhere in there….. Whatever, come see me if you can!

tiny bruce willis

Melody, Finley and Charles are watching Robyn cheer and dance in her cheer exhibition. I have been having a lot of seizure like activity, without the whole eyes-rolling-back-in-my-head sort of thing. I look really quite attractive (or as Tyra would say – fierce) during these crazy muscle spasms, so you can imagine how much fun they are for one and all. Photo op, maybe? They are usually brought on by stress or too much activity, so I have been relegated to the house – per the instructions of my nurses slash dictators Melody and Charles. I may not get to be there, but, on the bright side, I get to stay home and enjoy popcorn, coke and a movie, minus the popcorn and coke.

I have surgery today to put in my port. You know the drill, I haven’t had anything to eat or drink since last night at 11pm. The last procedure I had I told the doctor I didn’t want to puke all over his suspenders – that’s what a little Versed will do for you. You feel a little drunk, ok maybe a lot drunk, and you really don’t care what you say. I downed 4 bottles of water last night right before 11, just so I could be as full as possible for today – I’m beginning to realize that’s not how it works. J But at least I’m hydrated! My surgery was scheduled for 1pm, but has been pushed back till 2pm. I’m thinking this no eating thing may be a good diet plan, I might drop a few extra pounds today.

Back to my movie of choice – Die Hard. I had the choice between Sisterhood of the Traveling Pants and Die Hard. You think I’m going to choose Sisterhood, right? Let’s all just agree here, Bruce Willis is H-O-T hot. No matter what age, covered in blood, or walking the red carpet in a white suit – he just looks G-O-O-D good. And while we are here – how can he pull off the white suit thing? I mean seriously most white guys just can’t do it. Personally, I only know one who can – Dwyer Scott, my chiropractor. Sorry, rabbit trail…….

I chose Die Hard, partially because of Bruce, partially because I promised Mel I would watch Sisterhood with her, and mainly because I can totally relate. Let’s just pretend you are watching Die Hard - go with me on this one…….and there is a GIANT terrorist, Chronic Lyme Borreliosis (CLB), that has taken my brain and body hostage. Hmmmmm, as I’m watching, I am realizing that Hans Gruber is a pretty puny little pansy. (say that 3 times fast.) So let’s just picture his whole team – Hans, Karl, Franco, Argyle, Tony, Theo, Alexander, Kristoff, Eddie, Uli, Henrich, Fritz and James as my terrorists. They are just running around in there willy nilly, shooting the place up with their machine guns.  And there is this tiny little Bruce Willis inside of me – I know, I know it’s a stretch. 

I just like to picture it that way. He is trying to multi-task, and as we all know – men are just not good at that. He is fighting and fighting, trying to kill the terrorists and to get some help at the same time. He is shooting his gun, while yelling and screaming from the rooftops while calling 911 – but no one believes him. “False alarm.” “Wild goose chase.” “All’s clear here.” “Just a prank.” Sounds like some of the doctors I’ve seen. But then, you remember the infamous scene, Bruce - John McClain finally gets some attention when he breaks a window and drops a dead body onto the hood of Al’s car, and then shoots it up with a big gun. Finally, finally, someone takes him seriously. It is about freaking time!!

My “body destroying Al’s car moment” was when I stepped through the door at Jemsek. I walked in and Anne understood everything I said. She didn’t laugh or say it was psychosomatic, she didn’t say I was seeking drugs or that it was just because I was a mother of 2 kiddos. She got it. The tiny Bruce and I shared a sigh of relief. He had to keep fighting, but at least now he had some help. The odds were a little more even. Plus, he didn’t have to multi-task anymore…and that was good for all parties involved.

Barefoot, bloody, glass under his feet, still H-O-T hot, the tiny little Bruce…..he never gave up. And neither will I. I will fight. I am fighting for my life. I want to be Brooke again. I want my life back. I want to go to - my oh so talented -Robyn’s cheerleading exhibition. I want to jump on the trampoline with my girls. I want to tickle Finley and make her giggle. I want to dance with my husband, ok – we’ve never really been much for dancing, but you know what they say about those who can't dance, they love.... J I want to run the Mud Run with all my friends, teach yoga again, get a tattoo, go skydiving…….I just want to be well and to do all the things I love to do and learn new things too. I WILL NOT GIVE UP TILL I GET THERE! You hear me Lyme disease – me and Bruce – we are coming for you!!!

runts

The problem with letting your 2 ½ year old look in the fridge and pick out her own breakfast. “Hmmmm….. I want cheese, cereal, milk, a waffle……..uhhh and yogurt. I have never seen anyone so indecisive.

Well, that’s not exactly true. To be fair, she comes by it honestly. I am nothing if not indecisive. I can’t make a decision to save my life. I could never decide what I wanted at McDonald’s – Nuggets, a Big Mac, or a Spicy Chicken Sandwich (now a moot point since that delicious gourmet food is off-limits.) I can never decide which movie to watch, would I rather eat or sleep, which jeans fit best, if I want chicken or fish, to order pizza or Chinese, water or milk, skirt or dress -  well, that one is probably just more of a girl thing. Did you know that they made those double scoop cones with each scoop a different flavor because of me? I am literally not equipped with the ability to make any decision without wringing my hands in worry.

Part of this comes down to my childhood. Now, I am quite aware that everyone who has ever seen a hack counselor blames everything on their childhood, but truthfully this is just one of those times when it is a simple fact of life. To be fair, the other factor is my charming yet perfectionist side of my personality. Let’s be honest here, it’s not just a side, it’s the whole thing. If you’ve ever met me you will discover this in short order.

When I was little we didn’t really have a lot of money. My choices were very limited, stir that up with my perfectionistic personality and any choice became life or death, to the point of sobbing and gnashing of teeth. My mom tells the story that as a treat she would give my sister and I each a dollar and let us pick whatever we wanted from the dollar store. She says my sister would pick in the first 5 minutes, while I would wander up and down each aisle, the speed of the Tortoise, and desperately search for the exact right thing. Weighing my options between the figurine of a disfigured angel, a candle that smelled like a hospital, and a Sugar Daddy. Even decisions like that carried the weight of the world.

This made the teenage years an utter joy for my parents. My worry filled every corner of my life and theirs. Do you think I should spend the night with Kristen or go to the pool party with the youth group? Do you think I should break up with my boyfriend or stay with him because I don’t want to break his heart? Do you think I should wear my hair curly or straight? Should I take my backpack or just carry my books? I’m sure there were times that my mom and dad thought, “JUST DECIDE ALREADY!” You get the idea. Fun times.

After my track record, my poor momma was so worried that when it came time for me to get married I wouldn’t be able to decide. Guess what? That one was the only decision I never even one time questioned, I never worried about. I knew, I just knew. And 13 years later I still don’t. Charles is the man that God chose for me before we were born and I love him more each day. Inside his ring is the inscription, “Song of Solomon 3:4” which says, “I have found the one whom my soul loves.” Ok, enough with the mushy gushy.....moving on.

The Bible talks a lot about worry. These are a few of my favs: Deuteronomy 31:8 says, “God is striding ahead of you. He's right there with you. He won't let you down; He won't leave you. Don't be intimidated. Don't worry." I love Psalm 127:2 which says, “It's useless to rise early and go to bed late, and work your worried fingers to the bone. Don't you know He enjoys giving rest to those He loves?” Luke 21:14, “Make up your mind right now not to worry about it.” Proverbs 3:24, “You'll take afternoon naps without a worry, you'll enjoy a good night's sleep.” And I am convicted by Matthew 16:8 which describes those who worry as “runt believers.”

God wants to bless us, but we spend so much time worrying and fretting about what to do. Logically I realize that He is going to give us what He knows is best, but in my heart I worry, worry, worry. Sometimes He must think, “just be patient my child, I will make the right decision, you don’t need to worry.” What a sweet promise, what a wonderful place to abide, and yet, I am still worried that I won’t be able to just let go and stay there.

torpedoed

This weekend we experienced my first full body shut down. Admittedly, it could’ve been much worse, but being our first experience it shook us all up a bit. I did way too much. I overdid it. Ignoring Charles’ repeated warnings, I just never stopped all day. The igniting factor was a 7am call of nature that led to a negative pregnancy test. The adrenaline rush made it impossible to go back to sleep, so I just ground my emotions down into a gritty little dust and listened to my logical side, put on a smile, and got to work, thinking, “Fine, I’ll show you!”

First of all, you have to understand that this disease has made it close to impossible for me to do even the most basic of household chores. Secondly, you have to understand that I am stubborn. And not just a little stubborn ……

Adrenaline is a wonderful drug. I was a machine from 7 am on. We were going to the pool with my sister friend Jasmine and her family, and I was going to make this an absolutely perfect day for everyone. I let Charles sleep in, cleaned the kitchen, fed the girls, even shaved my legs! I got all the food, towels, toys, swimmy diapers, regular diapers, wipes, shoes, cover-ups, snacks, hand sanitizer, sunscreen, swimsuits, hats, and the kitchen sink packed, I got the girls into their suits and into the car in record time and we took off.  I played the perfect little hostess, introducing Jasmine to my friend who had let us use her neighborhood pool. I made sure everyone had water, everyone was comfortable, I ran around taking pictures, offering snacks, laughing at jokes, does everyone have a towel? Sunglasses?  Are you having the best time ever? Do you need any sunscreen? Can I put it on your back for you? Did you see this part of the pool? Are you too cold? Too hot? Let me stand over you to create some shade, let me dry you off, let me create a float for you from this piece of paper, let me fry you an egg on my tummy, let me cut out my heart and give it to you on a silver platter. The adrenaline was working. Everyone was having a blast as I continued to promise Charles I’d sit down to rest “in just a minute.”

I finally sat down in the kiddie pool as Jasmine and I watched our little girls play. My right knee had been spasming most of the day. For me, that’s like the warning blast that sounds just before a submarine is blown to bits by a torpedo. I didn’t listen. I kept moving, going, entertaining, so my body issued a second warning, one that no one could ignore. My whole body went into spasms and I was haunted by Charles’ voice begging me to, “please sit down and rest.” Jasmine and Tanger ushered me to a chair, my gait that of a late stage Parkinson’s patient. I was embarrassed and scared, both emotions brought on the sobs that made the spasms worse. It was definitely one of my lowest points so far.

So I’m beginning to accept that I’ve entered this alternate universe where my poor sweet husband has become my butler, my chef, my maid, my nurse and my nanny (fun for only the first few days, after that I just felt guilty.) Where on a bad day I may have to crawl to get to the bathroom, where it’s hard to text, type or pluck my chin hairs because my hands are shaking so badly, where each day that I make it through without peeing my pants is celebrated, as is each BM – I know, I know, too much info. In this universe I have to take over 50 pills a day, I am drinking liquid iron and cod liver oil (gag me with a spoon!) I live in my pj’s, have my 2 yr old correct me when I call a microphone a motorcycle, and walk as if I'm three sheets to the wind.

But there are good days too, even good moments on the bad days. I am learning to appreciate each and every single one. Celebrating the days I can walk instead of crawl, when I can make my own breakfast and coffee, when I can carry Finley to her bed. These days are wonderful. These days fill me with hope and joy. But most of all they make me even more determined to fight this disease. To get well, to no longer be this shell of who I used to be, and to one day race my kids to the top of a hill, or in a more likely scenario, to take them to the mall and be able keep up with them as we race from one store to the next. J