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!”