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.

it happens

This is not for the faint at heart. Although, I have just been informed that for some families it is dinner conversation.

Poop. Yep, Poop. Poo-poo. Doodie. Pooh. Ka-ka. Feces. Doo-doo. Dookie.

Growing up, it was only discussed during diapering and potty training. After that, somehow it disappeared from our lives. Apparently, we had moved to a planet were no one ever pooped. It never happened. The smell was patently ignored. The sounds emanating from the small little room down the hall – what? I didn’t hear anything.

Marriage. Same thing. We are living on a strange planet you know. We clap, jump up and down and do a little dance when a two year old poops, a seven year old, we hold their hand when they have bad cramping from diarrhea, but once they hit the teen years – it’s all over. It completely stops. Do we no longer digest food? I mean, this is a worldwide epidemic.

Maybe rather than bringing awareness to Lyme disease  - I will bring awareness to the fact that people poop. Brown bracelets rather than green.

Of course, now that I am sick, there is no avoiding it. It is now becoming an hourly convo. When you have to start counting, describing, analyzing, etc, there is no avoiding it.

Now the pièce de résistance, the colonoscopy. I thought in all my testing I had somehow escaped this one dreaded test. But ah, it was not to be.

I guess it’s “off we go, into the wild blue yonder.” Well, not sure if it’ll be blue, but at least “To infinity and beyond.” “To go where no man has gone before.”

But indeed, my favorite by far, “Two roads diverged in a wood and I – I took the one less traveled by.”

Poop happens people. Poop Happens.

the edge

The Edge. It is amazing when you’re barely hanging on by the skin of your teeth (although teeth don’t have skin) how it takes just the littlest of events to push you right over.

Picture a tall tree. No leaves. Lots of prickly branches. Like they show in Halloween cartoons. The scary trees.

Picture me, Brooke, hanging on by the skin of her teeth to the top branch. Hmmmm…..we are back to the skin of your teeth deal…….there is no skin on my teeth, not sure about yours, but……1. mine are fairly clean, except for the black iron stains now and then, and 2. If yours have skin – seriously, see a dentist. Oops there I go, rabbit trail again! I just can’t stop them.

Back to the tree, if I were trying to hold on to a prickly branch – I would definitely not use my mouth, I would use my hands, preferably with gloves, maybe even hook my arms up over the branch, again, preferably with some sort of sweatshirt or something to protect my body.

Unfortunately, for me, none of those were available. I was holding on, my arms hooked up over the branch. It was a little scratchy, but I was having fun with my friends, swinging my feet back and forth, laughing down at them from the top.

Eventually though, the swinging got old, my arms fell asleep, so I dropped down to my hands. Now it got a little fun again. I could swing back and forth. It tore my hands to shreds, but it was fun in a way. But I was starting to hurt pretty badly. I was fading fast.

I finally had to let go. It wasn’t fun anymore. It was torture. I hit every branch on the way down. Ripping my cloths, bruising my body, landing in a sobbing heap at the bottom.

God wrapped His loving arms around me. He gathered me in His arms, my wounds were healed, He kissed my forehead, I closed my eyes and began to fall asleep wrapped safe in His arms. He whispered softly in my ear, “I will always pick you up when you fall.”

tiff

I get pretty tired of writing to tell you how bad thingsare. Because they are rarely gonna be good, and I just hate to be a complainer. I know you would say, oh no it’s ok, everyone needs to vent…..tell you what, you stop by, and I assure you I will vent, tears and all. But right now I just want to keep things complaint free, if possible.

My cousin Tiff is here. I love her to bits, probably because we are so similar. The more I look at her, the more I see pieces of me. Except for the 3+ inches she has on me. She claims 3, I think it is more like 5. It probably depends on which of her gorgeous heels she is wearing.

Last night I could hear her putting new sheets on my bed. I watched her as she folded the laundry. I overheard her comfort Finley when she got soap in her eye (although, it must be said, she was the one to get soap in the said eye.) I listen each nite as she puts the kids to sleep, and straightens up the kitchen.

I just woke up and I can hear giggles and jumping, laughing and screaming as Tiff and the kids play upstairs. She is doing my job right now. She is filling in for me. She is being the mom that I cannot be, bridging the gap.

She has been here to help this week, and the time is slipping too fast through our fingers. I can hardly bear to think about Sunday morning when she boards that rickety little plane in Florence and, if that little guy makes it to Charlotte, she’ll be back in Austin.

It is so much fun to have someone who just gets you. I am blessed to have more than my fair share.

Tiff is one of those people.