You're Taking Me Where?

My daughter, Kristin, is really protective of me.

For the past few years, it's been the 2 of us hanging out together at the mall or Starbucks or Off-Fifth...pretty much everywhere. That is, when she's not working. We love to go out for breakfast and lunch, too. She eats healthy, so it's always good. Plus, she's really funny. Her sense of humor and easy-going nature endear her to everyone.

But I can't help noticing that she is really protective of me. I love that about her...Like even when there are other people around, she wants to be the one to push me because she's afraid someone else won't do a good job or a safe job...

BB is like that. There's a lot to love about that girl. (We call her BB because she's the baby of the family and apparently we called her Baby Kristin a lot!) Because when she was 11 months old, I asked her her name and she just said, "BB." It stuck. Everyone calls her BB.

BB and me this past Thanksgiving 

But let me start from the beginning.

When I first got my chair, 3 years ago, we didn't know what we were doing! Yes, there's a learning curve to this rolling life. So we tried going places we really shouldn't have been...!

...like the time BB was rolling me down a sidewalk outside of the mall and cut the corner a little close. One wheel went into a flower bed with mulch in it and I toppled over!! We laughed until we cried! I'm sure people around us stared in disbelief but we didn't notice because we were too wrapped up in our own laughter! We never really care what other people think anyway.

She learned from that, though.  She has never made another 'driving error.'

Once, when my parents came to visit, my mom tried to roll me over a speed bump in a parking lot!! Yeah, that doesn't work... (I'm laughing out loud at the memory of it!)  She rolled me back and forth, and back and forth, trying to gain enough momentum to get me up and over that thing...! (My mom is one determined lady and she'd do anything for me) ...but,
It never happened...
We were not going to make it over that bump!!

Which is why, we discovered, they marked a path for rollers with blue stripes...if you know to look for them. At that point in time, I wasn't good about remembering such things. It doesn't take too many experiences like this to learn, though!! So funny!

Rollers are safer on the blue striped path 

Recently, my future son-in-law was given the responsibility of being 'in charge' of me for the day. Poor guy. I don't know how he drew the short straw. Apparently there was some kind of secret meeting held behind my back and the next thing I knew, he was my designated driver. This bothered me a little at first. I didn't know Tim that well and pushing me is a bit personal, you know? But, the others were busy with a fitness challenge we were attending and couldn't do it, so he was elected.

This is Tim with my daughter, Kate

I decided to look at it as an opportunity to get to know him better. And it was. I'm glad things worked out the way they did! I wouldn't trade that day for anything.

But, we did not have an easy time of it by any means! He was treated to the full measure of all that it means to be out in public as a roller. We had to cross a major highway, go through gravel, over dirt trails, across a grassy path, into some pot holes, over the hills, along broken sidewalks and past some nasty people in order to be spectators at this event, located in the hills of North Georgia. And that was just to get to the entrance! I held on for dear life as I endured the ride of a lifetime! Not before nor since, have I experienced anything like it. I prayed for Timmy's strength to hold out! I prayed for my chair to hold together and wished for a better suspension and bigger tires!
When we actually arrived at our destination, we couldn't enter. That's right...

It wasn't accessible.

True story. But no one mentioned that before we worked so hard to get there.

See, in order to get to the starting line, he would've had to position me at the top of a very steep grassy hill and let go, which I could've added to my résumé of adrenaline-rushing sports!

Instead, we shrugged our shoulders, dusted ourselves off and parked my chair on a hill just outside the entrance. It had been a long hike from that parking lot to this spot, but we did it. And we weren't moving. Furthermore, we were both still happy to be there.

"I'll be back with some waters and pretzels. Do you need anything else? Are you ok in this spot?"
He had won my respect. He earned it. You can tell a lot about a person by how they push your wheel chair and this guy was speaking volumes.

One of my favorite things is whenever I'm left in no man's land... You know, facing the wall, or facing a rack of clothes up against a wall, while the rest of the group goes on to look around the store! These are rookie mistakes, as I call them. They make me smile. No one does it maliciously. Every single driver makes them, which is why it's good to have a manual chair and not a transport chair. That way I can maneuver myself to where I'd rather be.

My BFF, Suzanne pushed me the entirety of a 5k Race 

It isn't only other people who keep me laughing. I've gotten myself into some pretty silly situations without any help at all!

One time, I thought I'd try going through the sand! (Yes, I'm that dense) As you know by now, I love the beach and I didn't know my chair wasn't an ATV, so I thought, 'Why not?'
Well, I found out, of course!!
I had been up on the Bermuda grass at Deerfield Beach, watching the waves, when the bright idea hit me to roll forward and put my feet in the sand!! You guessed it. Instantly stuck! Don't roll your wheel chair into the sand! By the way, you can wheel through Bermuda grass, but not the St. Augustine stuff everywhere else in Florida.
Oh, the details you learn as you go about your life...

Deerfield Beach Boardwalk, Bermuda grass and all! 

I'm here all the time!

Wow. I know I've forgotten some of the jams I've been in with my chair, but these are a few of the highlights. They're great, aren't they? I'm surrounded by friends and family who share my passion for living and laughing! They're with me. They're here. They help me do all that I can and I love each one of them for their commitment to me and my rolling life!
Keep laughing!

Peace my friends xx

What's Wrong With This Picture?

I'm not writing this to trash the medical community.
Not at all.
In fact, I've grown very fond of my doctors and the hospitals that treat me.

There is something that has to be said, though.

This little story starts in 2004, about 7 years before my diagnosis. Yes, seven very long years of schlepping around to doctors and emergency rooms trying to find someone willing to listen.

Something was going terribly wrong with my body and I knew it, but I couldn't find anyone interested in helping me. I could not have anticipated this.. No, not in my wildest dreams.

Let me say this, finding a diagnosis for muscle disease or other rare disease, is not easy! It's not, as they say, for the faint of heart.

The change in my muscles' strength was obvious, yet no one tested them. For years, no one tested them! My reflexes were dull, but they weren't checked either. I complained of severe headaches, with aura. I was prescribed pain pills... Strong ones! Oh, and anti-depressants and anti-anxiety meds... I got plenty of those. (Have they become the answer to all our ills?)

"Why?" I remember thinking, "why is this so hard?"
It was a frustrating process that took many years. I would try and give up, try and give up. And so it went, for about 7 years.

Eventually, I booked an appointment at the Cleveland Clinic...world renowned, great reputation... 'Surely they can help me,' I thought.
It took all of my strength and energy to get there that day, but I made it. My hopes were high. I
expected so much.

"I'll do some labs, but meanwhile, you keep taking those anti-depressants, ok?"
I just looked at him, my face was expressionless.
My heart dropped into my stomach... 'Is he serious?' I thought.

I promised him I'd stop by the lab on my way out for the blood-work he had ordered, but as the tears began to flow, I couldn't get to my car fast enough.
Suddenly I was exhausted.
I needed to sleep.
Daily naps were also new to me. Muscle weakness, muscle fatigue, pain, headaches...all of it was
new, but the medical community wanted to tell me I was depressed or simply stressed out. I wanted  to wring their collective necks.

Yes, all of them.

Was the muscle paralysis also from depression?

Yeah. They just looked at me like I had 2 heads when I talked about that.

One time I went to an ER, already in a paralytic attack and they asked if I had always been a nut job. The 'nurse' in that particular ER also kept running over my feet with the wheels of the wheelchair I was sitting in because I couldn't hold them on the foot plates. She eventually dropped me on the floor trying to move me onto a gurney because she never really believed my legs were paralyzed.

I was unable to speak from the paralysis, or I would've screamed for someone to get me out of there! That was, without a doubt, the single most frightening experience of my life. I believed I would die that night, in that ER, surrounded by incompetence.

Sound like fun?

These are stories I've mostly forgotten until this minute. It's not that I've buried them, it's just that
they're not relevant anymore. Someone else reminded me of them a little while ago and I decided it
was time to tell this story, because it's not only my story, but the story of millions of others who are sick, and need answers.

In fact, I know of another Periodic Paralysis patient who did pass away in an ER from respiratory failure because the medical staff didn't recognize his inability to breathe on his own and he couldn't speak for himself. They simply didn't intubate him in time.
Careless. A senseless death. Why?
I grieve for his wife and 2 children.

                                          

Jump to Spring 2011 when I walked into my neurologist's office for the first time. I was finally referred to him by a cardiologist who saw me once in the hospital and noticed I was a lot weaker than I should be!

Wow! Imagine that...

So, this is what happened at that first appointment with my neurologist.
He asked me a lot of questions. And...
He listened to me. Then,

He examined me.
He tested my muscle strength--all the muscles in my body!
He tested all of my reflexes.
He asked me to walk...straight lines, backwards, sideways, etc.
He asked me to hold up my arms, my fingers, feet and toes.
He checked my eyes.
Get the idea?

Then he asked me more questions and  again, he listened to my answers.
He took lots of notes.
He ordered MRIs.
And he was kind to me.

I came back to see him the following week for an EMG, which is a painful test involving wires that are inserted into the muscles to test nerve function. I didn't care. We were getting somewhere. I was thankful. So thankful.

Then he sent me down to see another neurologist, his mentor at the University of Miami, for a follow-up evaluation and a second opinion.

FINALLY. Finally, I was being taken seriously. I was receiving the care and treatment I had been so desperate to find.

At UM, I was treated to a 2 hour appointment with the head of neurology, a genius of a man, and a wonderful human being. He also runs the MDA Clinic for the Greater Miami area. He has seen more muscle disease than most any other doctor on the planet. 

He began our appointment by telling me this:
"If I can't diagnose the problem, I don't have the right to assume a psychotropic reason for your symptoms."
I had to pinch myself!! Is he for real?!
This is the way he practices medicine. It's also the way he teaches his medical students, including my personal neurologist.
I just wish more doctors thought, practiced and taught this way.

Yes, it took patience and perseverance (and a lot of heartbreak!) to get the diagnosis I desperately needed. There were lots of months that I laid-low, giving up for a time. But I'd rise again, determined to find the help I needed...

I didn't even know how much those 7 years were preparing me for the struggle I would have against this thing called Periodic Paralysis.

My message to you?

Don't give up friends. Whatever you're dealing with, persevere! Stay with it. Your tenacity will pay off.
As always, I wish you the peace of Jesus Christ xx
Oh and
GO 'CANES!