the lonely blogger's block

I just have nothing for you this week. Nada. Zilch. Zero. Nil. Ziperonni. 

I have decided to turn it around on you.......

Respond back to this blog with what you want to hear about......or maybe what you for sure don’t want to hear about. 

Looking forward to hearing from you guys out there....... 

re-entry

Let me preface this by saying, I am extremely thankful to my parents for keeping the girls for three entire weeks, for shuttling them from here to there and from there to here. For giving up all their time and energies and pouring them into my baby girls. I will never be able to let them know how grateful I am or repay them in any way. It was gut-wrenching to be without them , and yet at the same time oh so refreshing. That being said.....

The screams of joy at our reunion have quickly melted down into screams of disappointment and frustration. The kisses and I love you(s) have become angry pouts and demanding cries of “No!” Bouts of fake crying  while watching out of the corner of the eye to see what we’ll do. The “It’s not Fair(s)!!!” are out in full force, as are the little tests to see just how far they can push it.  Hmmmm.......how spoiled can two sweet little girls become in a matter of three short weeks? Very. It would seem.   

The even more disturbing part is how much they have grown in three weeks, especially on Finley’s part. I’m sure I do not like what I have missed. Finley no longer calls herself “Fimpy” but very distinctly “Finley.” She no longer calls her sister “Roba” or “Roby,” but the proper version “Robyn” instead. She walks better, talks better, weighs more, got taller, and apparently now likes syrup on her hotdogs. Thank you Nana. She also asked daddy if she could ride in the front seat, and when he told her no, she informed him that “Papa let me do it.” (All your secrets are being revealed Nana and Papa)

Out of all these things, the one thing that grieves me the most is that she did not return potty trained. Before they left I just subtly hinted, then I started dropping little clues here and there, everything but coming right out with it. After all, I do have Lyme disease, an incurable, sometimes fatal, disease. At age 62 (sorry mom) you’d think the least she could do is work on an easy little thing such as potty training. It’s not like she had anything else to do. She and my sister even taunted me with pictures that gave me false hope. Imagine my disappointment when I hugged my little Finn and still felt a diapered bottom. Ohhh, the humanity.

Now, Robyn. Not as much evidence of the spoiling. In my humble opinion, “taking care” of her baby cousin, John William - or as Finley calls him John Wilwam, actually gave her an added sense of responsibility. She seems a little more cooperative, helpful with Finley. I mean, hello, she is also still 7. She throws the occasional fit, gets mad at her mom and dad, disobeys and pouts. All in all though, she really seems more polite and responsible. A very good return on my 3 week investment. The only thing I’m not sure of is why none of her clothes fit anymore. It must have something to do with those syrup covered hotdogs......

teeth, glorious teeth

Something is changing the color of my teeth. Either it is the liquid iron or the heavy dose of antibiotics. They are black. Sticky, grody black that looks like I’ve been eating actual dirt. Black that no matter how hard I try I can’t brush or floss away. Yes, I do floss on occasion - especially on the occasion of black teeth. 

Vanity, vanity, all is vanity. I know it is all my pride and vanity, but I really do not want to spend the rest of my life with black teeth. That would certainly take my hotness factor down a few notches. And, at this point, I don’t have many notches left to go. Can you imagine, “oh there’s that sweet girl with lyme disease.” You walk over to say hi, tap me on the shoulder, and around turns Jack Sparrow. Not a pretty picture, although I am quite sure I cannot do the accent any justice as I am horribly incompetent in that arena. Blimey!!!

My smile. Now I guess it all comes down to my smile. If you look at pictures of when I was young - Wow! If there was ever a case in desperate need of braces, I was it. you name the problem I probably had it. I spent my entire childhood smiling with my lips closed snugly together, not a bit of teeth showing. This was along with a horrible perm and that ridiculous high bangs stage. Now who in the world thought that one up. I can just hear the ad execs at Aqua Net right now,“Hey what if we start getting girls to buy into this crazy idea that their bangs should look like a billboard on top of their heads, I bet we’d sell a bunch more hairspray!!!!” You also had the more satellite dish variety, but I was a billboard girl, through and through. Between that and my frizzy spiral perm......let’s just say late 80’s - early 90’s, not my best years. Add braces on top of that, and you’ve got a mean combination for an immediate Heisman from the popular crowd.

I finally got those braces off when I was 16. My smile was perfect, and you couldn’t get me to stop flashing it. It was my favorite accessory. Now I was still flaunting RI-DIC-U-LOUS hair, but the smile , the smile was my saving grace.

Onto college, where I was still working out some hair issues, but again my smile reigned supreme. The second time I saw Charles, he looked at me and said, “You have the biggest smile I have ever seen.” I will never forget that moment. That moment led from there right up to where we are today, madly in love, two presh kiddos (if you don’t get that, you may want to read my entry Salivating Anxiety and skim through the half word lesson.) My husband absolutely loves his job, which makes me so happy, I thrive off of being a momma, and Christ is the center of our marriage. All of that makes me so happy I could smile......oh oops......on second thought, maybe not. 

trenta, that's right i said trenta

I know you have been waiting with baited breath for this blog entry. Okay, well not exactly baited, you probably reserve that for things like babies’ births, new cars, bungee jumping. In that case, we need to come up with something a little less than baited but not all the way down to completely uninterested. Maybe bayed breath? That takes the T out of it and gives it a little less punch and pow. Let’s just say, you may have been waiting for this entry with bayed breath. 

Now my fav thing, pre-lyme days, was a super size coke from MickeyDs. For some reason, their cokes are better than any other - there is no comparison. I guess that was even pre-pre-lyme days, because the largest you can get right now is just a regular large. What about those super-sizers out there like me? I have even considered purchasing 2 larges, in a pathetic attempt to get the same amount of delish icey cold cola-ness as before. My treat was to get the supersize coke and 2 apple pies for $1. I decided I needed therapy though when the girl at the drive-thru recognized my voice......hmmm......But I just couldn’t control myself. When I drive past a McDonald’s now there is a magnetic pull. I can almost taste it. I miss those days.

These days my new treat is ....well hold that thought for a minute.

I am traveling - I use that word lightly - back from my 3rd visit to Jemsek. Charles is attempting to drive in downtown DC in rush hour traffic. If you have ever driven in the middle of DC then you know about these bizarre roundabouts. If not - there are no words.

To start the day, I got a little wink from God. My old fav hoodie is wool. Regrettably, I have become allergic to wool. I had been doing some serious reconn to find a new one. Tragically, to no avail. It would appear that no one sells hoodies in Myrtle Beach in the middle of the summer. Go figure. I must be the only one whose temperature gauge has gone cattywampus and is constantly freezing. 

Well one of the friends we stay with, Tracy, had let me borrow one of hers last time we were in DC, and over the past month I have grown to L-O-V-E love it. I think if I had to give it back it would be as traumatizing as a child losing her blankie. This morning she told me just to keep it! God was up there with a big old grin on His face as He winked at me and gave me exactly what I needed....for free! 

My good friend Karla recently reminded me of the movie 28 Days when Sandra Bullock’s character had to wear a sign around her neck that read, “Confront me if I don’t ask for help” Hmm...that hits pretty close to home. I think I need to borrow her sign. Imagine cutting off your own arm a’la Aron Ralston - times 10 - and you are getting close to understanding how much I dislike asking for help. One of the things that God has been teaching me through this disease is to ask for help when I need it and to not be afraid to ask for what I want.

My previous visit to Jemsek, I was in a comfy recliner while I infused; blankets, pillows, heater - the whole nine.You can imagine my surprise then, as my nurse Christina, led me into what looked like a typical doctors office, stiff crinkly paper on the pleather and metal table, cold white tiles on the floor, the overwhelming lysol smell fills the air, you’ve been there. I knew immediately I wanted the comfy chair room, but I didn’t want to be a bother. I could feel God’s hand on my shoulder, gently prompting me to ask about the other room. I took in a deep breath and blurted the question out. She promised next time she would  reserve it for me. After a few minutes I felt the prompting again. Holy cow, God! He and I were duking it out...I’ll give you a guess.....He won. I opened my mouth, to speak, no words. Finally out squeaked this tiny little voice asking if we could switch rooms and apologizing all in the same breath. The room was in use, so I took my lumps, feeling a mixture of satisfaction and relief that at least I had heeded God’s prompts. 

This visit was to test run my new antibiotic. No reactions. Yay! No hives, no puking or diarrhea, (phew!) I was more worried about that than the possibility of anaphylactic shock. But none of that either. I did make sure they all had their EPI pens close at hand. I keep imagining that scene from Pulp Fiction when they stab the needle straight into Uma Thurman’s heart. But alas, no such excitement, oh well.  

Out of the blue, another wink from God. The comfy room had been freed up! Double yay!! Ok, lesson learned. We walk across the hall into sheer luxury. Imagine if The Ritz had a medical room. Pillows, blankets, soft lighting. It’s still an infusion, but, you may as well be comfy. Right? 

Have you ever watched Swamp People? Really great reality show! They are down in backwoods Louisiana hunting gators, way down where they brew their own liquor. They take their boats down through the swampy waters of the bayou hanging dead chickens from the trees, trying to lure a big ole’ gator onto the line. You should really give it a try. It’s even better than it sounds, the show, not gator huntin’. Oops .....there I go again, rabbit trail.....sorry. 

Hahaha, finally, this rabbit trail does actually have a point. Most of my meds are clear, they just look like water running through the line. This infusion looked just like that swampy water from the bayou, and I couldn’t help but imagine those chickens hanging from the trees dripping their blood into the water. Take a deep breath Brooke, it’s just a little iron to help with my anemia. I did have a few Herx reactions during my visit, but it was short lived.

A few tweaks here and there with my meds and we were free to go with our “schedule” for the next month. Now imagine, a prescription written out for you by your doctor. Do you see that clearly in your mind? Okay now picture that on an 8X12 piece of paper. This is my “schedule” if you will. Tell me, what percentage would you be able to read? Is there a pre-req in med school called “Illegible Handwriting 101?” It would seem so. 

Six hours from the time we walked in, it was finally time to go.

Back to what I was saying about my new fav treat........Charles pushed my wheelchair half a block past the clinic, straight through the doors of heaven. I could smell the coffee wafting through the doors even before he opened them. Ahhhhhh, Starbucks, my new guilty pleasure. I’m sure the calories in the half & half give the sugar calories in my supersize coke a run for their money. I got the new Trenta size, yes I did say Trenta decaf, unsweetened iced coffee w/ lots of half &half. Some have been known to call this size the Starbucket, whatever it is called, it is 31 oz of happiness in a cup. Puts a smile on my face every single time! 

salivating anxiety

We are leaving for DC tonite. I am  anxious, I can feel the anxiety in my chest. I can feel it in my tummy. I can feel it in my toes. I can feel it in the back of my mouth, like I am salivating anxiety. Can one actually salivate anxiety? I guess so.

In DC I will go to Jemsek Specialty Clinic. They will “test run” my next IV antibiotic. Now, the words test run don’t give me a lot of comfort. Correct me if I am wrong, but isn’t that what people do with a car they would like to buy? They don’t test run a car expecting a crash.  You take that silver jaguar out for a little joyride, bring the keys back in and say, “well there was this little red sign that said S-T-O-P that I just didn’t see.......”

In DC the objective is to see if I do crash....comforting, I know. Crash being anything from puking all the way up to anapyhlactic shock. Oh, is that all? Perfect. Is everyone carrying their EPI pens? They do actually take really good care of me there. I am just freaking out! Don’t forget - I am salivating anxiety.

Did you know that according to the movie The Holiday, “Severe stress makes women age prematurely because stress causes DNA in our cells to shrink until they can no longer replicate. So when we’re stressed we look haggard.” Now I realize that The Holiday is not the Bible or even Wikipedia, but that sounds about right, and haggard is not the look i’m going for here. I may be sick, but you can bet your bottom dollar I’m not going to look like I’m sick. Fashion still reigns supreme. Even if I am in anaphylactic shock, at least my hair will look good.

So back to the test run....

I don’t know what is causing my anxiety to become drool. It could be that Melody’s house almost burned down, it could be that last time we were at the airport I got laughed at, it may be that I feel bad for barging in on Klon and Tracy after they just returned from vacay, it may be that we are selling just about everything we own in a garage sale on Saturday. It may just be Herx (you’ll be up on that word in a minute.) I don’t know. But, each new drug has the possibility of bringing on new, what the people in the know call Herxheimer Reactions. Now if you are really cool, like me, you call it Herx, because who has enough time to actually say the entire word? You may have noticed my application of this principle earlier in this paragraph - see how cool that makes me. Seriously, it’s like a total epiph. You totally have to give it a whirl. You say Herxheimer, I say Herx.

Okay, let’s get down to business. I’m really running on rabbit trails today. Let’s just blame it all on the anxiety salivation. 

I am looking through the binder they gave me. Should I be concerned that there is an entire section on diarrhea? I mean the tabs are pretty normal….FAQ – normal…..Dressing change info – normal…..infusion instructions – normal……Diarrhea – NOT normal. Have you ever had a binder that had a bright yellow tab reading Diarrhea? Be honest – the answer is a big resounding NO!! The section consists of five pages. How much is there to say about diarrhea? Page 1: It is awful. Page 2: You’ll be stuck on the toilet all day long for the rest of you life. Page 3 : Stay hydrated. Page 4: Do not, under any circumstances, have anyone over for dinner. Page 5: We are going to take every shred of dignity that you had left and drowned it in the toilet.  

Hmmmm... I wonder how many people want to come visit me now, eh? That’s okay, it’s not a time I’d like to share with you either. If that hasn’t scared you off, just call Charles before stopping by to make sure I’m not spending some quality time with the porcelain princess.

Speaking of the porcelain princess, next in the long list of Herx (see how cool that makes me sound) is puking, tossing your cookies, throwing up, retching, barfing, upchucking, hugging the porcelain princess, vomiting, ralphing. I’m sure you get the idea. I’m not sure which is worse, choice A or choice B. Now the DOUBLE WHAMMY would be A and B together. Herx will no longer be a cool word in my book. I will no longer want any visitors. Please, for the love of all that is good in this world, don’t visit me if I get the DOUBLE WHAMMY. 

Well, there’s nothing to do about it, eh? Except shrug my shoulders and take the test run......no choice, no turning back now. We are in it to win it. At least you got a good lesson in being cool and rocking the half words. Of being fashionable during anaphylactic shock. You learned that you can actually salivate anxiety. Words of wisdom about diarrhea and vomiting. And if all fails - you learned a new word - Herx.

what if.....

I sobbed my guts out today. I think that maybe there are just some days you are allowed to do that. Some days that you just need to do that, some days that you just HAVE to do that. (Of course, if we have to tear a ticket every time we do, well then, I might need to request more tickets) You know, I cry little bits here and there. Lately, more big bits than little ones. But today, it just all poured out in one huge gushing torrent. Think Niagara Falls. 

My sister Susan has a band with my brother, brother in law, and sister in law. I am sitting in the car waiting for Charles. Listening to her sing about her life, tears begin to stream down my face as I realize how much of it I have missed.

The other day someone mentioned that their youngest child would be 21 in December, and I smiled and replied, “oh, my sister Amanda will be too.” Suddenly it hit me like a train, grabbing me in its grip and pulling me along.  I never thought I would miss so much of her life. She is an adult. My little Amydada is an adult. How in the world did she get there? She felt like mine when she was born and somehow I missed all the in between parts.

See, being the oldest, they have all become mine in someway or another.

My brother Josh just got married to a precious, beautiful girl named Jordan. He is married now and I have missed his life, he was my Joshy when I was twelve and he was five. He drove me crazy, playing tricks on me while I babysat him. He was my Joshy when I was 17 and he was ten. He stayed by my side, protecting me from a boy who had broken my heart. And now as he and Jordan set off on their lives together, I am not there to watch as God leads them on their journey.

My sweet Mindy and I were inseparable, people thought we were twins, she was my best friend. We played Barbies together, we dreamt together, we jumped on beds together and rode our bikes everywhere. She is married now with three adorable children. When on God’s green earth did that happen? Somewhere between bike riding and July 7th, 2011, Mindy became a wife, a mother, a gourmet cook, an extraordinary writer and actor.

My sister in law, Lynn was just 10 when I met her. I remember her telling me in no uncertain terms that her brother would be coming home to live with her after he finished college. I remember little bits, flag core and graduation, her wedding. But I missed all the parts that made her into the woman she is today. All the parts that led her to a house with an amazing husband and a bunch of cute kitties.

My siblings are all living out their dreams and I am missing it all. Their entire lives ahead of them. Their dreams still out there and they are reaching for them; big, extraordinary dreams, floating just ahead of them. I feel jealous, so very, very jealous.

So. Truth time. Brooke unplugged. I am mad at God. I know that is not a popular place to be as a Christian - let alone a pastor’s wife (gasp!) But, I have been sick for the past 5 years and I don’t even know where my dreams have gone or who this girl named Brooke is anymore. 

The baby who lay cuddled up in her daddy’s arms as he sang Bye Oh Baby Bunting and dreamed big dreams for her. The little girl who roller skated, hanging by a belt on a homemade pulley. Who brilliantly wet her bed because her momma instructed her, “DON’T get out of bed and DON’T call me.” (I mean what’s a 5 yr old to do?) Who snuck downstairs to listen to the grownups talk while eating spoonfuls of pure sugar. Who jumped right out onto an enormous tree swing without a care in the world, laughing wildly as she did; who dug up worms, built a tree house, climbed pine trees and raced her sister from the top of one tree to the next. The girl who drove a bobcat for her daddy, helped him shingle a roof, pound a nail, and change a alternator.

The girl who jumped off a 90 ft water fall on a dare from a boy who ended up becoming her husband. The girl who stayed up half the night with her best friend, making up dances for their cheerleading squad. The girl who lay on a blanket in the Grassy Bowl, looking up at the clouds and seeing her dreams in them, close enough to reach out and grab. The girl whose smile radiated to every corner when she entered the room, who made friends with everyone, who never cared about her weight, or what size clothes she wore. Who went to class in her pj’s, hiked through Pocket Wilderness, jumped in the freezing cold water with her clothes on. Who did the highest bungee jump in the world at Victoria Falls. Who got in the car and traveled on a whim to see her friends, family and in laws.

Who is she, where is she? How many years have passed her by as she struggled with a disease that no one could put their finger on. When did this become her journey? And how did she miss all these pieces of Lynn, Mindy, Joshy, Suzy-Q and AmyDaDa’s journey too?

Entering a furniture store today brought back memories of the day we got engaged. We walked hand in hand, swinging our arms between us. Not a care in the world. We walked from one expensive furniture store to the next, dreaming about our lives, our future. Now Charles is pushing me in a wheelchair, struggling to make it through the door, as we look for the cheapest set of bunk beds we can find. (Let me just tell you, just in case you’re in the market for some, they aren’t at Ethan Allen.) I don’t even know what weighs on me more. That I can’t walk on my own two feet, or that we can’t afford anything in the store. God, why? Why is this the path you have chosen for me?

I realize, I am so overwhelmingly blessed. I am blessed beyond belief. We have a lovely home, we have two amazing children, we have family that loves us, and day after day we are humbled by the donations that people make towards my treatment. I know there are many, many more damaging diseases and so many less fortunate than me. But this day, this one day, I feel sorry for myself. Everyone deserves a pity party now and then, right?

So lets just forget the five years that have passed by so quickly. Let’s just look at right now. What if.....

What if this journey is just for my mom and dad? They have only ever had snippets of time with Robyn and Finley. Kids grow so fast, every snippet just magnifying the evidence of how much they were missing. What if this time that they get to spend with the kids ministers to them as they see Robyn and Finley’s personalities? What if the journey I’m on is to teach my mom how to let go? What if it were just for them. Would it be worth it? Yes.

What if this were all for my friend Jackie, who, after experiencing Charles and my faith, renewed her relationship with Christ to the point that He became the center of her life, and she and her daughter were baptized a few weeks ago. What if it were all just for her? Would be worth it? Yes. Not a doubt in my mind. Yes.

What if it were for my friend Karla and the blessing she was to me as we renewed our friendship after so many years, as we laughed and cried together, as she expressed how I had ministered to her by just sharing my story. What if it were just for her? Would it be worth it?Yes, it would be worth it.

What if it is for Melody, who sits by me and rubs my arm as I have a seizure, who organizes my pills, feeds my children, helps me out of the tub; who laughs by far the best laugh I have ever heard, that immediately puts a smile on my face every single time, and who has become a very dear friend. What if it were all just for her? Would it be worth it? My answer is yes.

What if were to build this beautiful friendship that is forming with Sam (whose smile alone cheers me up) and Candy? What if the way they minister to me in such an unselfish and grace-filled way is somehow ministering back to them as well? Would that make it worth it? A bell ringing yes.

What about my little Robyn and Finley? What if somehow watching me go through this disease is shaping them into the people  they will become? Would that make it all worth it? Beyond a shadow of a doubt, Yes.

What if this is going to grow my precious marriage into an even stronger, even more understanding, more honest, more loving place. What if it was just for that one thing? Would that be enough to make it worth it? An absolute, kiss me on the mouth, yes.

What if it is for my Aunt Lori and her precious girls, Lexi and Dani who lost their daddy 2 years ago? Who pray for me every single night. Who set up a lemonade stand in their front yard to raise money for my treatment. What if somehow, someway, this is for them? Would just that one family be worth it? No questions asked, yes, yes, yes.

What if it is for just one person who has sat by me, loved on me, brought me dinner or balloons, experienced the Love of Christ in some way through this situation? Would it be worth it? Yes Lord, yes.

It is so hard right now my Lord. It is so hard to see the forest for the trees. These lives that may have been changed by (what I view as) my tiny little life. These lives, these precious children of yours, if you are using me God, then I let go. I give it up to you. This shell I feel I have become. This disease that has ravaged my body. I surrender myself to you. You can have me, you can use me. You who holds me in the palm of Your mighty hands. I give up. I am Yours.

Isaiah 43:2-3 “As I walk through the river, You will hold my hand; and through the waters, I will not by overflowed. When I walk through the fire, I will not be burned, and the flames will not scorch me. For YOU are the LORD MY GOD. The Holy one of Israel, MY SAVIOR.”   The Holy one of Israel, MY SAVIOR.”