game changers

No matter how sick I feel,

washing my face

brushing my teeth

washing under my arms

(and putting on deodorant)

and washing between my toes

- weird, I realize.

These four things

are my game changers.

They make things feel just a tiny bit closer to normal,

make the pain diminish just a bit,

they change the shape of my day.

No matter how you feel,

keep your game changers in your hip pocket,

You might need them one day.

lists

I have lists upon lists, as I am sure many of you do. I have two girls, making sure they both have the same amount of toys and such is driving me absolutely insane. I know I can’t get them everything on their ever changing lists - IPad, DS-I, puppies & kittens (Charles would kill me), but luckily and strangely, they both asked for hand sanitizer, which is one thing I can actually fulfill! :o)

We had to have the conversation with Robyn this year about Santa. She was just asking too many questions and we felt like we were lying to her all the time. So we told her and brought her into our little world of secrecy. She now enjoys helping us keep the secret from Finley and making it real for her. Although when she found out Charles was the one who ate the cookies and milk, she responded with a resounding “No fair!!!!”

She also is asking many questions about Jesus. As is Finley. It is sweet to watch her play with the nativity - the one from our dear friend Phillip’s mother that we use every year - not fancy, but meant to be played with. She asks who is Jesus’s daddy and who is his mommy. We talk about what Christmas really means, and Robyn explained to Finley, “that is why we give gifts.” I feel very blessed that there is such clarity in her mind about the true meaning of Christmas.

Back to the lists. Just looking at them gives me a panic attack. But in the end, I know it’s not about the lists. I want to show my love so badly. There is no way that I can show them the love that God showed us in sending His only Son to earth. That is one act I cannot follow. Toys and hand sanitizer will never add up to that. But, I bet God enjoys watching them open their presents as much as I do. The looks of awe, extreme joy and pleasure must remind Him of the joy He felt that night so long ago, as He watched Mary hold Jesus in her arms. Her sheer joy as she held His baby boy and love overwhelmed her. He must have felt that same joy that fills our hearts, and makes us laugh out loud as we watch our children’s happiness. Giving gifts. God gave us the best one. We can enjoy getting and giving gifts because He gave the best one. I imagine Him sitting up there watching us with a huge smile on His face, a cup of cocoa in his enormous hand, and slapping His knee with a hearty laugh now and then as joy fills His heart at our joy. That is my picture of Christmas. That is what is really on my list.

if i were there

if I were there

i’d knock on your door

i’d give you a great big hug

then i’d hold you and let you cry

then we’d eat an enormous amount of homemade cinnamon rolls

because the ticket still counts

then we’d cry

then we’d play a really fun game

and laugh out loud

then we’d cry

then we’d order a pizza - minus the nuts of course

then we’d cry

then we’d watch a suspenseful movie

and jump at all the same parts

then we’d curl up in bed

and cry just a little more

as we fell asleep

the silence is broken

Wow, it has been awhile. 2 weeks, I apologize. No excuses, I should have written. I will not bore you with tales of sickness and woe, misery and laughter. Suffice it to say, it has been a very fun-filled and yet at the same time completely miserable two weeks. My entire family was here for Thanksgiving, it was so good to all be together again. Some of my sisters and brothers I hadn’t seen in a year.

On second thought, why not bore you....it will be fun...just wait and see.

We left off on the last posting during our idyllic trip to National Harbor, which made a very abrupt turn upon the news that our sweet little kitty kat, Lizzi, had died. We knew it was coming, but it turns out that the actual happening hurts much worse than the knowledge of its coming. Shortly thereafter, my mom, who had been here to care for the kids while we were gone, left to return to Florida. Thus the woe part I had mentioned.

Ah, next the sickness. Dr. Jemsek saved the best for last - or at least the last so far. Tigecycline or Tyg for short. Nasty when taken alone, almost unbearable when paired with Meropenom, Daraprim and Leucovorin. A sadistic little concoction. They could have institutionalized me, maybe should have, probably would have if they could have. I do not like green eggs and ham. I do not like them sam I am. One fish, Two fish, Red fish, Blue fish.......rabbit trail, bunny trail, funny trail, rabbit trail....

Just a little Dr. Suess for your reading pleasure. He always lightens the mood. Or so I am told.

Back to the sadistic little concoction. It turned me into a crazy sick lunatic. During which time, my family came to town. My poor family. I’m not sure they knew what they were in for. I had some good pockets, a few great pockets. But for the most part I was pretty sick. The week was blurry. It could have been worse, I could have not been there at all. There were very hard times, but there were very, very good times as well.....

I chose a slight green chair that swiveled and rocked as my roost. Sitting in my green chair, laughing at the kids laughing and screaming. Laughing at my younger sisters’ attempts to avoid the laughing and screaming at all costs.  Me directing, as my daddy hung the garland and the wreaths just as I said - making our beach house look like Christmas.  All the kids decorating the christmas tree. Christmas morning. Robyn’s excitement forever burned in my memory - her sharp intake of breath as her eyes grew wide the moment she realized she was getting an American Girl doll. All of the children as they opened their gifts and played with them for hours.  My momma’s yummy roast beef and mashed potatoes and corn on Tuesday, the day we celebrated Christmas.

Enjoying all the amazing things everyone made for one another...... cross stitched families by Amanda, gorgeous lamps for the girls by Jordan and a washers game for the boys by Josh, beautiful handmade wreaths wrapped in handmade bags for the girls by Susan along with lovely scarfs, delicious homemade salsa from Michael - of which I honestly ate half a jar in one sitting, a meaningful book from Mindy. So many gifts, so much love poured into each stitch, each paint covered hand and staple. Each thought put into everything. So much love here.

Dad’s latest invention - a three wheeled motor cycle which holds not only him, but mom and all the grandchildren as well. Altho mom preferred to just let the grandchildren ride as she watched from the porch, sweet tea in hand. Watching them drive off down the road - helmets atop all heads -  as the giggles of the girls in their matching jackets float up to our balcony, people on the street stopping to stare. That was the big hit of the week. Cries of “Papa, pleeeeeeaaaaasee take us on a ride!” were a constant chorus. We treasured those moments of child free silence. Although by the time we got our coffee and got to the lovely white rockers on the sun-filled porch, their laughter could be heard coming back down the street. We were oh so grateful as “papa” smiled up at us with a wink and took them to the park and then another few turns around the block. I think he was having just as much fun as they were.

Thanksgiving day - the smell, if not the taste, but the smell of Susan’s cinnamon rolls in the morning. Late afternoon - mom's traditional meal. All 16 of us, minus our sweet Ben - who drew the bad luck of working in St Louis on Black Friday. 17 minus 1 gathered around the long table, holding hands and singing in harmony before Daddy prayed. Playing games, and laughing till it hurt. Sharing, crying and praying with one another.

Memories of my momma washing my thinning hair and both my younger sisters helping me make it look pretty. Slightly disgruntled cooperation as the yearly tradition of picture morning commenced. Moans and complaints as our one location suddenly turned into three.  Wardrobe changes by the ones who don’t even realize the extent of their beauty. Down the pier, looking for sharks, finding just bird poo instead. Finally making it to the beach, sitting in comfortable silence with Mindy, the warm sand covering my feet, watching our girls run and play as Michael took one picture after another. (Thank you to the genius that is Michael Logsdon)

Our special dinner at Travinia. Our last night. Talking about New Year’s Resolutions since we’ll be far apart on that day, some serious and thought provoking, some not so serious. So much laughter, at the same time, tears.

Tears as we say goodbye. Hugs that hold on for dear life, never wanting to let go. Sobs that wrench at your gut and break your heart. Begging God to bring us all together again soon.

As I type this out, I realize how blessed I am. sick or well, watching from my green chair, or being in the middle of the action, being cared for, or taking care of others, I am blessed beyond belief. Thank you my sweet Father. In the midst of so much pain, You have showered on me such great love.

Aloft

God provided this amazing modern hotel, Aloft, right on the Potomac River, smack-dab in the middle of a little corner of Prince Georges’s County, Maryland, called National Harbor.

It’s an old-school, meets new-school 3 block area replete with cobblestone crosswalks, gray haired gentlemen playing chess in the middle of the square, quaint little shoppes such as “Hats in the Belfry,” “Charming Charlie,” and a gorgeous view across the Potomac. 

 I know, I know, I just couldn't stop taking pics!!!!

Gorgeous trees that have turned for fall glistening bright red in the sunset, an awesome 70 ft. statue of a giant attempting to free himself from the ground called “The Awakening” by J. Steward Johnson Jr.

  

I am sitting in my very vogue purple striped chair ready to snuggle into my cozy platform bed. My husband and I watching Live Free or Die Hard on our wall hung flat panel TV, as we both work on our computers. One of our fav things to do.

Windows look out over the tree-lined square with the gray haired gentleman playing chess, the cobblestone crosswalks and the quaint little shoppes like “Hats in the Belfry” where I tried on one hat after another - my fav being this $350 beauty. Between that and the gorgeous fascinators I tried on, I’m convinced that either I was born in the wrong era or on the wrong continent. 

Dinner is a Philly roll and a yummy all natural Ginger Punch for me and Lemongrass Chicken for him at this great Thai place just up the block. Lights twinkle in the trees, but these aren’t your grandma’s twinkle lights. These are little box lights fading slowly from one soft shade to another wrapped tight to the branch in perfectly random order. While speakers on the lamp posts quietly emit tones of smooth jazz that almost make you want to dance. like a party for your eyes and ears. 

I love this little slice of heaven. I love how God knows exactly how to wink at me and calm my heart in the midst of one of the most difficult months of treatment thus far. I love that I am not forgotten. I love that every tiny little detail of this place speaks to my soul, sparks my creativity, awakens my senses that have long been craving to be aroused.

Then the dawn. Moving silently down the square as it lights up one golden tree after another with its brilliant light. No sleeping in here - between that and the clattering bell of my alarm - I am wide awake. The same can not be said for the man snoring next to me. Apparently he is immune to both.

The cute apartments across the way boast french doors and wrought iron balconies, their multi-colored brick facades trying to replicate cities of old like New York and DC - now I am really jealous. There is even a rooftop garden. Imagining the parties and the urban chic get togethers they have up there makes me painfully aware of my sweet little home (that I do unabashadly love) in suburbia. I feel like we are in an episode of Friends - updated for 2011 of course, and much, much cooler. This place is magic. A tiny mock city. These are popping up all over the nation - I want one.

oopsie daisy

okay, in "messy bits" I accidentally gave you the wrong reference. I said it was Isaiah 31:10, but it is actually Isaiah 43:2-3.  :o)

messy bits

I am watching, for the 5th or 6th time, the movie Letters to Juliet. Charlie just said, and I am paraphrasing here, ”Look, you made a decision and you got to skip all the messy bits.” Claire countered, “life is the messy bits.”  I think, with what is left of my spirochete infested brain, that this part of my life could be considered a “messy bit.”

That was the first paragraph of this blog. and then I was going to expound with lavish detail about how the messy bits are hard but we have to be strong. BlaH, BLAH, Blah, Blah freakin’ Blah!!!!

My mom says I am so mad at this "messy bit" that I just end up picking something to be mad at and take it all out on that person. Well the good thing in this situation is that it is not a person. It is one of my favorite mugs. Fairly new. I bought it on a whim for myself on my birthday. It was from anthropologie, where I never spend my money because it is too expensive. It was so pretty, and it matched me. It was my fav color and it had my initial on it, lowercase, which matches me too. I am so mad at that beautiful little mug that I drank from just this morning.

I am so mad that I am sobbing as I type this. My mug is gone. I went to pick it up, instead flicking it with my pinky, just enough to make it wobble and fall into the bathroom sink. In a split second it was gone. 5 shattered pieces, no longer able to do its job. My beautiful, special mug, bought on a whim from an expensive store. It’s gone.

Guess what. The thing I am mourning is not my mug. As I write this, ragged and bare, for you to read, it is not my sweet mug I mourn. It is me. I am sobbing over the loss of me. Where have I gone? I am lying next to the sink in 5 shattered pieces. I once was beautiful, special, favored. I could do my job. I could handle all the hot, steaming coffee you could send my way. I could fulfill my purpose. Where is that girl. She is gone. I can no longer do what I was made to do!! This disease has ripped that right out of my hands and left what? What is left in it’s place? I see 5 shattered pieces that can do nothing, that have no purpose and should be thrown away.

Oh my precious Lord, how can I do what you created me to do when I am lying here, shattered and useless? How can I mother my children when I am completely broken. How can I be a wife when all that was beautiful and helpful about me is now gone.

The lovely colors and the very things that made me who I was have been torn away from us by this, this hellish thing that has ravaged my mind and my body. Leaving a mind that cannot think straight, or remember, or read, or talk without pausing to recall a word or and entire train of thought. A body, battered and bruised, no longer strong and able, but weak to the point I cannot lift my own daughter, I cannot walk without assistance, I cannot care for myself, I am losing my hair. I cannot walk casually through the living room bending to pick up toys and clothes, cleaning my house as I go. I cannot meet my Robyn at the door and fix her a snack after school. I cannot get my girls up in the morning to dress them, feed them breakfast, kiss them goodbye and drop them at school. I cannot do the most basic things. All the little and big things that make up a mother. I think we surpassed "messy bits" several paragraphs ago.

What am I worth now? The list is never ending of all the things I cannot do. I know, I know. Look at the bight side. God is providing. He isn’t letting me go. He is in control. He will never give me more than I can handle. Well, guess what God? I don’t feel like I can handle anymore!!!!!!! Do you hear me? I am overwhelmed by this storm. I am a broken and shattered mug, lying beside the sink in 5 useless pieces.

A pause, my torrent of words and rain dies down and I step out of the boat and onto the water. I can hear Jesus calling from the shore, “Brooke, trust me, walk to me. Trust me, I know you can do this.”

Breathe in, breathe out. Placing one foot in front of the other, hands outstretched towards my Jesus waiting for me on the shore. In my broken brain, bits and pieces come to me. I begin to remember a verse that my mom taught me not long ago. Was it Isiah? I can’t remember how to spell it, but I think that was it. Isaiah 43:2-3? As I walk through the rivers He will hold my hand, and through the waters, I will not be overwhelmed. As I walk through the fire, I will not be burned, the flames will not consume me. For He is the Lord my God, the Holy one of Israel. My Lord and my Savior.

I cling to that verse, I trust my Lord, I breathe and put one foot in front of the other.

the miracle worker I married

After months of worry (surprise, surprise), and many, many half-hearted and failed attempts on my part, I must give credit where credit is due, the amazing man I married has succeeded where others have fallen short. “Others” being me.

I do actually have a good excuse. Usually excuses are just smoke and mirrors, right? The dog ate my homework. There was traffic on 501. I’m too sick (*cough, cough*) to make it into the office today. I missed my train. My alarm didn’t go off.

But, not this time. Call 911 and tell those trucks to turn around because there ain’t no smoke here. Not today. I’m playing the Lyme card this time. I’m holding it high and claiming legit e-x-c-u. . . . . . . I can’t even speak the word, because the word excuse, by its very nature, is a fabrication, or a poorly constructed exaggeration of the truth.

Mental picture time:

Lyme diseased, bed ridden me, running with Finley to the potty chair, one hand frantically grasping for her hand, the other awkwardly driving the walker, which, let’s face it, at this point, is more hindrance than help. Careening wildly through the house. Pulling her pants down, whilst at the same time attempting not to run over a toe. Holding her nightgown up with my teeth, as I struggle to wrangle this squirmy little bugger, which by this time has peed all over both of us, onto a potty chair. Watching as I do, the bowl to our sad little potty chair spinning in circles as it rolls out of the now toppled chair, splattering what little pee that actually made it into said bowl, across the floor, Not a scenario that works for me. You?

So it was left up to him.

As I mentioned, we did have a sad little potty seat, the cheapest one from Walmart. Does that thing instill any confidence? Does it in anyway invite you? “Come, rest your weary buns, pee in me.”  I guess in this case, money does matter. My sister Mindy invested in the “singing” potty chair, a miniaturized version of the real thing - and then some. It’s bright colors and sparkly silver handle just draw you in, and say to you, “hello, come to me with those tiny buns, relax and let the pee come forth.” And to top it all off, a little sensor in the middle that actually sings when potty hits it. Of course she wants to use it - I want to use it.

Now the pièce de résistance, as all you mothers out there are acutely aware of, is the pooping. She had never had a potty accident. I think she is too much of a perfectionist like her mother to ever let that happen. But the poop still eluded us.

I haven’t blogged about poop in quite some time, so I thought it a perfect time to bring it back. Besides, since I have gotten all my pooping issues under control, at least for this round of antibiotics, my choices are very slim. Charles’ pooping issues or those of one of my girls. I am beyond sure that you prefer the latter to the former. Or I guess I could tell you about my cats’. Now they have issues! *Sigh*, once again Trix are for kids - sorry about the rabbit trail. Hmmm, I just realized that an actual rabbit trail is made of poop. *Chuckle*

Back to the poop. The poop was not happening. Singing potty or no singing potty chair, it’s disco ball effect was all but lost on her when it came to the poop. She would squeeze those buns shut with a resounding slam and sit on the floor until the urge passed. No poop was getting past those clad-iron gates. And this is how we continued for several days. She would sneak a poop in every once in awhile. When we put her diaper on for the night, and before we could get her into bed, she would do her business.

So in the end, it all came down to me. It did. All she needed was a little motivation in the form of a purple band-aid covered in multi-colored hearts and stars. (My idea - by the way.) Her boo-boo needed covered with a certain special band-aid and we wanted poop. Perfect collision of needs, and voila! Stinky success!

ode to awakening

a scream of “daddy!”
a rush of adrenaline
a dark room

where is “daddy?”
who is screaming?
why?

is a fire raging?
is an appendage being severed?
is it a brutal kidnapping?

tick

adrenaline pumping
mind racing
stomach churning

tock

there is “daddy!”
screamer identified
why?

the television
disney channel
not to be found

adrenaline pumping
sweet slumber
gone

puzzle time

I don’t know why, but there is nothing quite like the sweet smell of my baby’s breath. You would think by the age of three I would have gotten past that, but no, I still can’t get enough of it. I’m sure the sentiment fades with age. My mom probably no longer feels the same.

As I was slowly waking up I heard tiny footsteps outside my door. The instant I called FINLEY she turned the knob and came running in my room, puzzle in hand. “Play this!” she pled with a big smile. As soon as I could pry my eyes all the way open, I sat up and pulled her close. We found a “board” to build the puzzle on and set to work.


We built one of a lamb and a bumble bee, and one of Winnie the Pooh and hmmmmm....... a bumble bee. It seems, from my admittedly limited research that children’s puzzle makers find bumble bees an appropriate “filler” so to speak.

 I, however, find it quite odd that anyone would come to the conclusion that this is the best choice. Can you just imagine the train of thought........”blank space, hmmm... a dragonfly, no, oh maybe a cute ladybug, no. What about a sweet little butterfly, eww, definitely not. I know, let’s slap a smile on a bumble bee and paint that in. Perfect!” Let’s just teach kids that these yellow and black stripped creatures are nice, smiley and sweet and that you should go up to them and try to pet them. Thank you - puzzle makers, could you come hold my crying child as she screams from her bee sting.

Again, rabbit trail. Deal.

The hour we spent building and tearing apart puzzles ended in a big tickle fight and once again trying to teach a 3 year old the importance of cleaning up after she is done playing. Ahhhhh, motherhood.

Precious moments in the midst of incredible pain. I cherish each little one.

the pocket

Yesterday, all was right with the world. I was on cloud nine. I felt good, singing, dancing, being goofy. I felt like myself again! It was phenomenal.

It lasted about 4 - 6 hours, well at least the super-duper great part. The whole day was great. It is what Dr. Jemsek calls a “good pocket.” I call it freedom. This is my vacation week. No antibiotics this week. I repeat, NO antibiotics this week. The rub is that it takes about 5 days for many of these antibiotics to actually leave my system. Therefore, vacation week somehow morphs into a strange mixed bag of #1 - super-duper great, #2 - great, #3 - quiet desperation and #4 - horrific. In no specific order. Just reach in and - surprise - wake up and see which number I’ve pulled. Fun for the whole family.

Super-Duper Great Nite

#1 - This seems to happen on the Monday of vacation. When I’m in the pocket, the super-duper part, In my mind I'm jumping up and down, waving my arms. Dancing, laughing aloud and singing at the top of my lungs. I’m hyper and fun. I feel good about myself and the people around me. Nothing can get me down, not even the fact that I'm wheelchair bound. I say the things I always want to say, the stuff that I usually second guess myself into not saying. I am talkative, funny and bold. I call people I meet by their first names without being scared I’m wrong.  I am the absolute best form of myself.

Stickerpalooza - the best part of my day

#2 - This is usually right before #1. This was Monday morning this week- open my eyes with a smile on my face. I’m snuggled down in the bottom of the pocket, nice and cozy. It’s like the old days, when I felt good, when I smiled for no reason, when Charles and I were usually on the same page, when dinner wasn’t in liquid form every night. The kids barely annoy me, I’m patient and kind. I expect the best of people, rather than assuming the worst. Nothing really makes me mad, I’m laid back and more like I was in the old days before meds and pain ruled my days.
 

Are anyone else's children this hyper?

#3 - This is often my payment (totally worth it) for my phenomenal Monday. When I’m falling out, gripping the edge of the pocket with my tiny little fingers, struggling desperately to swing my leg back up into that pocket just for one more day. It is a quiet desperation, a grim acceptance of the fact that I’m just not quite strong enough yet to pull up this ball and chain of pills and infusions. It’s like my body is here, pain and balance worse for the wear, but my personality is gone. I don’t have the energy to meet new people, or to do much at all for that matter. I can still pull together a smile and fake laugh for friends. I’m Debbie Downer. Not fun to be around. My brain isn’t remembering well, concentration is out of the question.  I cry easier, longer, harder. I feel like Chicken Little, “the shy is falling! The sky is falling!” A hyper child in the same room as me grates on my nerves like nails on a chalkboard. This works well with a 3 and 7 year old.

Completely out of the pocket

#4 - When I’m really, really far out, I just couldn’t hold onto the edge of that pocket another second and I am falling into that dark deep hole that houses depression, anxiety and other scary monsters. I can barely raise my head off the pillow. I literally do not have the energy to speak above a whisper. My body feels like I fell out of a 3rd story window, it hurts to be touched. I don’t have the power to yell, get mad, frustrated or any other emotion. Crying is just tears rolling down my cheeks onto my pillow. Really not great.

(Note to self: find synonyms for “really” and “great” asap)

Vacation doesn’t sound quite as fun when deconstructed like that, eh? It’s only Tuesday and I’ve opened that mixed bag and already drawn all 4 numbers. Dr. Jemsek is looking for the time when the first two begin to string together a few days in a row without the last two showing up in between. So far, not happening, but the week’s not over yet!

the new PT

PT. In my old life that would’ve stood for Personal Training. Working harder than you think you can. Eat.Sleep.Breathe.Train. Building muscle. Burning Fat. I was hardcore. Train Hard or Go Home. I trained 5-6 days a week for 2 hours. I went into labor in a weight lifting class for heaven’s sake! I spent most of my mornings at the gym - and I loved every minute - well some minutes were easier to love than others - but I loved almost every minute of it. I lived in athletic wear, taught Robyn yoga at age three, and was getting ready to start on Finn.  

Eileen working my legs and my core

 PT. In my new reality it stands for Physical Therapy. A whole new world. Since my daily uniform is now pj’s, I had to dig my yoga pants and sports bras out of the garage. But I am determined. I know that this journey is going to be so much more difficult than the one I was on before. But I also know I can do it. This is an uphill climb, but I can get back to where I was, one day at a time, one step at a time, one drop of sweat at a time.

Working those biceps

Obviously, I accept the fact that I won’t be running up the step mill at full speed with 75 lbs. in a backpack while wearing stilettos and carrying a newborn baby, but I hope by next year I will be back to my old self. Maybe I’ll have to give myself two years, but I WILL get there. :o)

 I am lucky enough to do my PT at the same gym where I taught and trained. For 6 years I had been at Fitness Edge.  Although I can't do much, I still have the drive, the longing to be strong and agile, to take spinning classes, to run, to lift weights and take crazy hard classes. Being back only amped that feeling up even more.

Eileen, me and Myndi

My trainers are two of my close friends, Myndi and Eileen. Girls that I worked out with, they took my classes and I took theirs. They know me, they love me and they believe in me. That makes a big difference. They know just how far they can push me. It is a big wink from God that I get to do PT with them.

Triceps

My first week I did a lot of things that I didn’t think I could do which was encouraging. For the most part they kept it pretty light, but I did manage 3 modified (albeit very, very shaky) push-ups. Yay! My second week they threw in a few exercises standing on one leg. I pulled them out ....... shaking and gripping white-fingered to the handle in front of me, with Myndi very close one one side, Eileen on the other.

Stretching - hurts so good

I did come home and sleep for three hours after both sessions. And I was sore, but not quite as bad as I thought I would be. The deal is though, being sore from working out is completely different than the Lyme induced pain I feel everyday. Being sore is actually pain that I enjoy. I crave it. I love it. It’s like no other pain in the world, and after two years, it is amazing to feel that pain again!!

My third session is in a few days. Keep an eye out for me........I’ll be back to spin class and weight lifting in no time!

sunshine blessings

Lyme Disease is a strange and frustrating disease, with many blessings mingled in.

Today I spent the afternoon at a golf course (I’m actually horrible at golf - I cannot tell a lie!) Charles and I used to hit range balls when we lived by a golf course. And when I was a photographer at a golf course, we played a few times. I thought I could get good at it. I’m sure all golfers know that feeling when you are frustrated beyond belief, ready to throw in the towel, give up the ghost, ring the bell, give up, surrender, and then you hit that one perfect shot. And you are back in the game - completely hooked. And that’s the way it goes. The cyclical cycle of a bad golfer. okay - huge rabbit trail! Can I have a piece of carrot cake please? Let’s get back to whereat we began......

I spent the afternoon at a golf course. Not playing golf, fortunately for all involved, but attending a golf tournament that had been organized by Fitness Edge, with all the proceeds going to me. Overwhelming. Amazing. So thoughtful. As Charles stood behind my wheelchair to thank these men and women that had come out to play golf, to give money towards my medical costs, I felt almost detached from myself. Looking at those faces, most of whom I didn’t know, I felt how blessed I was to have people in my life that would put something like this together for me. I choked out the words thank you, but that was all I could get out.

Some of the foursomes that hung around for the photo op

Fitness Edge Staffers who did all the hard work

Thank you to Mike and those guys from Fitness Edge that put this together. Adam and Alison. And Myndi, Eileen and Connie. And thank you for all the people I met and spoke to, and shook hands with. All the people that smiled at me, all the paths that crossed, connections that were made, and the way that God orchestrated every moment of the day.

Me and my dad

Even though the forecast called for rain, it was sunny. Even though it was on a Sunday, Charles was still able to make it. Even though they live in Florida, my dad and brother-in-law were able to come be a part of this day. Even though I knew I was fading before we even got there, God gave me the strength to make it through the day. God had His hand all over this day, before the idea was even conceived.

 “Oh, the Lord’s been good to me! And so I thank the Lord, for giving me the things I need, the sun, the rain and the appleseed, the Lord’s been good to me.”

it's a poopy world

“It’s a Poopy World,” Finley declared as she informed us she had a dirty diaper.

Well Finn, I am in total agreement.

This new regimen that Dr Jemsek has me on........well to put it nicely........it stinks. Smells. It’s a Stinkaroo. Like Finn said, it’s a poopy world. Literally and figuratively.

Tara Palmer at the Royal Wedding

Cipro and Zithro....these two, they sound relatively innocent, right? They even rhyme.....how cute. They come in these innocuous little balls (some sort of reverse vacuum packaging that I don’t understand.) They look like you could play baseball or softball with them, do a little duckpin bowling (shout out to Pauly), wear them on your head to a royal wedding, paint them and hang them on your Christmas tree, use them for your juggling act in Cirque du Soleil - almost anything but dispense medicine that will make one sick as a dog....all in the name of getting well. Which, I must admit is a pretty good reason.


I am having a lot more cognitive involvement lately. Words that are spoken to me become shapes and colors. Letters switch places, and instead of tracking left to right, they begin marching from the top of the page to the bottom. I imagine things moving quite often, thinking I see spiders, doorknobs open, curtains swaying, children and cats running all over the house - oh wait - that last one is real. A few more digestive issues are continuing to bother me, which I believe we’ve discussed, in extensa, so I’ll just let you use your imagination. That’s the Cipro/Zithro combo in a nutshell.


There’s always the old stand-by, it could be worse. True. There is no question. It could be so much worse. I am so thankful it’s not any worse than it it is.

And, as my sweet friend reminded me as I was crying about it all, it can only get worse. Also true. No doubt about it. These treatments will continue to get worse and worse for the next few months.

All in the name of getting well......a very, very good reason.

But in the end, I agree with Finley tonite, “It’s a poopy world.” Sometimes you just gotta call it like it is.

Granny Brooke

Last nite one of Robyn’s friends asked Robyn if I was her mom or her grandmother.

Okay - first of all I know it can’t be because of my face - at least lets hope not or I’m worse off than I thought and all of you have been lying to me.......

Secondly - I know these treatments are pretty harsh on my body, and I have admitted to you before that my bladder control is nil, but I hadn’t wet my pants at all that day, and I wasn’t even wearing my adult diapers or granny panties.

Grandmother’s are getting younger and younger these days. I once met a 28 year old who was a grandmother. She had her daughter at 14 and her daughter followed suit. Although that is a very sad statement on the current affairs of the world.....it is proof that Robyn’s friend could have been exposed to many young grandmas and then easily think I was one too.

But, I have a feeling that none of these were the reasons I was called a grandma. I think it may be the way I was hunched in the wheel chair - with my scarf around my neck, glasses on, blanket around my knees, plastic bonnet on to keep my bun from getting wet. Easily mistaken for a little old lady. Plus the way I kept yellin’ after “sonny” to get the car and get us home, as I beat him over the head with my cane! :o)

At any rate, if I was her grandma I’d be doing pretty darn good  - catchin’ myself such a young, good-looking sugar-daddy. Just call me “Gold-Digger.” “Get down, girl! Go ‘head get down!”

hope

My morning began with my sweet Finley tip-toeing into my room, all dressed for school, cute as a button. She was chowing on a baggie of cheerios. I was sound asleep, the type of sleep that borders on unconsciousness, with my back turned to her.  Then she whispered “mommy.” Who can resist that? I mean even the Grinch would wake up if Finley whispered to him the way she did to me. I pried my eyes open and tried to turn over to face her. I put my hand out to touch her sweet, smiley face, and she dropped half a cheerio in it. She asked if I wanted it. I said I couldn’t. (My kids are very used to the food restrictions from Lyme’s.) She said, “save it till you get better soon.” I said “when is that?” Looking over her shoulder as she left my room she responded matter-of-factly, “In 4 hours.” (She did come back later to give me the other half a cheerio.)

A few days ago I had a major episode while Robyn had a friend over. Melody and Charles were hovering around me, Robyn and Rosemary peeking over their shoulders trying to see what was going on. Robyn, so blaisé after seeing it so many times, explains to Rosemary that, “my mom’s brain is broken for awhile.” a very apt and simple explanation. You could write pages on this disease, but it comes down to that one fact - my brain is broken.



Out of the mouths of babes, right? I guess that no longer works in the 21st century - “babes” has taken on a whole new meaning. Maybe it should be “Kids say the darndest things.” First of all, that was the title of a TV show, admittedly it was very funny, but I think the word darndest was actually made up just for the show. And while I’m a huge proponent of making up words, I just think this one is dumbalicious. I do believe I will just say - my kids are pretty smart.


The part that breaks my heart about these things they say is how used to it they’ve become to me being sick. An “episode” is no longer shocking to them. They know that when they get home that I will most likely be asleep. They know that other people will often be taking care of them. They know that I can’t eat certain things because I’m sick, and yet, every time I push my walker out of my bedroom, Finn says, “you all better now?” or “you not sick anymore?” And the thing that overwhelms me is the hope in her eyes. After my first dr. appt. in DC, Robyn asked to talk to me on the phone. She asked, “So, you are all better now?” She believed that one doctor’s visit would heal me completely. How do you explain to a 7 year old that you probably won’t feel better for almost a year. They believe every day that I’m gonna get better. There is never a doubt that I might not. They never, ever give up. There is just always hope. What a gift.

Hope guides me. It is what gets me through the day, and especially the night.   - A Knight’s Tale

sidewalk safety

Mr. Mack Truck meet Brooke Fox.

Let’s just all agree that the aforementioned meeting was precipitated by an unfortunate series of events that were somewhat unrelated, but seemed to collide at just the right moment in time.

I had to bundle up I was so cold

 Wednesday, began with a clear liquid diet and ended with serious bowel prep for the next day’s colonoscopy. During my prep, I sprinted (with  walker in hand mind you) to the bathroom about every ten minutes. All the while watching Survivor .... thank you electronic gurus for the pause button.

Back to the serious matter at hand, During the fun but intestinally challenging bowel prep, Charles got a phone call from his sister telling him his mom was in the hospital.

Stress.

Thursday, 6am: not knowing anymore info about Charles’ mom; dealing with 2 kids that weren’t sure about Mrs. Laura taking them to school. Mrs. Laura did an excellent job by the way.......so if you ever need a babysitter at 5:45 am, I’m sure she’d be so happy to hear that I’ve recommended her!

Ready for my Versed

Christy Adkins is my saving grace with these procedures I keep having. She just makes me feel so calm - well - it’s either her or the Versed. But honestly, she is amazing. This time, once I had a little Versed in me, I do remember asking Dr. Cornell what color suspenders he was wearing - twice. I also remember that when it came time to turn onto my side, I giggled to Christy something along the lines of, “now they can see my hiney!”

Still groggy from my colonoscopy, I can overhear Charles on the phone in the hall. It turns out his mom has massive blood clots in her lungs and leg, and is in ICU.

I immediately knew he had to go. Of course he had to go. We would find babysitters and people to help me. Jennie was the first, before he even got the question out of his mouth she was ready to do whatev. Then Melody, of course, Then Jodie. We survived splendidly. I kept it to about 4 meltdowns.

Charles returned on Saturday night, my parents arrived Sunday afternoon, and we left for DC Monday morning.

Poor sick Finn

Are you feeling the frantic chaos in the air?

Tuesday – the big appointment. Dr. Jemsek, end of Cycle #3. Let’s see what bomb we have for those spirochetes now. The trial run of my new antibiotic Cipro went swimmingly. As well as a Ferritin infusion for low iron.

Enter calls from Finley's school - 103* fever.

Stress! Stress!


Back to Dr. Jemsek. He has quite a cocktail cooked up for me. There is  a biosphere – basically a gooey, impenetrable bubble that has helped hide all this junk for 25 years. Dr. Jemsek has found a new combo of meds that can break through the bubble, releasing more of the bacteria so we can kill them all. Something that will make me feel completely awful, but will really throw a hand grenade into those spirochetes and other wily bacteria. Fun times on Oakhurst Drive!

Charles, me and Jen

After our 4 hr appt, I wanted to see this really cool part of downtown that had been hidden to me thus far -  The Shops at 2000 Pennsylvania Ave. I admit, I overdid it a little. The weather, so perfect; the stores that we don’t have in Myrtle Beach all up and down the road, the laughter and chats with a great friend who I hadn’t seen in almost 2 years. It was so good, I didn’t want it to end.

No, No, No! 5 more minutes in Anthropologie! Please.........
 

It was time to go, I was fading fast, barely able to move. As Charles and Jenn loaded me into the van, I could feel it coming......barreling right down the middle of the road.

Brooke Fox meet Mr. Mack Truck

I had done a lot too much. I knew it the whole time, but just for a few minutes I wanted to feel like I was normal again. I wanted to shop, laugh, chat, do all the things I used to do. I wouldn’t change a moment of my freedom. Although, maybe next time, we should stick to the sidewalk.

next time won't you sing with me

WARNING: the following should all be taken in jest. Jest, pure jest. Although I must interject that all the meds listed do enter my body on a daily basis. Yay for me!

Charles is determined to turn every problem into an opportunity. Lyme disease is a pretty difficult one to find the opportunity, but he did it!

So we are taking this opportunity of my Lyme disease and subsequent pill popping 75 pills a day to teach Finley her ABC’s in a very unique way.

one day's worth of pills

A is for Ativan and Acytal L-Carnitine
B is for B Complex Plus and B12 Sublingual
C is for Cytomel, Cortef, Cod Liver Oil, Cymbalta, CP1 and Clindamycin
D is for Deplin, Diphenhydramine and DHEA
E is for Epinephrine
F is for Flagyl and Ferritin
G is for Gamma Tocopherol and Groshong
H is for Heparin Lock Flush
I is for Iron liquid
J is for Jemsek
K is for Klonopin
L is for Lactated Ringers and Lamictal
M is for Mepron, Mobic, Magnesium Malate, Melatonin, Meriopenin and Methylcobal
N is for Neurontin, Nystatin, Nattokinase, and Nutrient 950
O is for Omeprazole
P is for Potassium and Promethazine
Q is for Qinghaosu
R is for Risperidone
S is for Septra, Synthroid, and Saccharomyces
T is for Trazadone
U is for Ubiquinol
V is for Vitamin C, Vitamin D
W is for wheelchair and walker
X is for xerostomia
Y is for *YUCK! YUCK! YUCK! YUCK!*
Z is for Zithromax and Zofran

She is coming along nicely, especially as we feed her each pill as she learns the letter. The distinct taste really makes each letter stick with her. And she enjoys each pill so much, she is anxious to practice everyday. It is very much like the Pavlov’s dog experiment. Although we are having trouble with the letter “Y” because she originally thought “yuck” meant something bad.

We do have to stagger our practicing as she often passes out after just a few letters. But she is doing so well. We are so very proud of her. We are pretty sure we can make it through the entire alphabet before too much damage has been done to her brain.

the big three-six

 Saturday nite was out to dinner at Travinias (shout out to their yummy Gluten Free Menu) and a movie - the ever depressing and OCD instigating movie Contagion, with my loves Tiffany and Charles.....
 

Monday morning began with a deliciousioso Edible Arrangement from my in-laws! Yum! Yum! Yum!

The Chocolate Covered Strawberries were definitely Finn's favs and the pinnapple was Charles'.

  
Monday nite was out with two amazing women in my life, Deanne and Melody. Out for pedis! Just what I needed.....so relaxing!

PINK!!!! 

My absolute favorite color for my toes! 

Don't you just love pedicures!

Afterward, I came home to cuddle in my chair, hear all about my little girls’ days, hang out with people I hold dear in my heart. We ate, talked, told stories, laughed and watched silly TV. 

There was no cake, there were no party hats or streamers. It was simple and it was great. Even in my adult diapers, my walker, infusions of antibiotics, and a colonoscopy fresh on the calendar........it was a great birthday. It’s the people you are with that make the birthday - not the circumstances......
 lesson learned.