September, September

I don’t know about you, but September is my busiest (and most favorite) month of the year. It’s one of those wonderful transition months that holds promises for how the rest of year will go.

Alright, so I might be a little biased as I was born in September, but in the last three years I’ve also had the opportunity to connect with something larger. September is CMT Awareness month and it always reminds me of the amazing people I have the privilege of connecting with throughout the year.

It’s also a chance for me and many others to help make a positive impact both in and out of our communities. This year I’m hosting our local Branch’s first Friends & Family Event and our second annual Walk-n-Roll! These sorts of events are happening all over the country (and I think in a couple of other countries). If you’re interested in participating this month and meeting some pretty great people, check out what’s happening in your neck of the woods.

Other reasons September is so great:

• By the end of the month I can start wearing my favorite long-sleeved outfits
• At the start of the month is Labor Day weekend = Dragon Con
• October is just around the corner
• Boots
• Hot apple cider
• My cat Pia’s “homecoming” month

Come back for my next post: The Travel Diaries: Spinning Around Utah

#1in2500

The Travel Diaries: Clinic Day in Iowa

My view from the plane

Sometimes it’s hard to find people who know what they’re talking about and can understand exactly what you need. When you have CMT it’s pretty common to hear people say, “I had to teach my doctor because he had no idea!” or “It’s so frustrating to see the doctor sometimes because they’re supposed to know how to help me and they don’t!”

I was fortunate enough to be able to travel 800 miles to Iowa City to see a team of people who are dedicated to knowing as much about CMT as possible. I finally met people who knew more about my disease than I did.

The University of Iowa Hospital has this wonderful clinic called “The CMT Clinic” where they offer a clinic day every Thursday.

What’s a “clinic day”?

To put it simply, a CMT clinic day is when a multidisciplinary team of doctors, physical and occupational therapists, orthotists, genetic counselors, and nurses all come together on one day to explain and address your CMT case. To say it in even simpler words: It’s amazing.

Let me tell you about my day

Driving with my Mom and brother from Cedar Rapids to Iowa City Thursday morning.

No matter how hard I try, I always run late and this was no exception. Luckily, you can choose the start time of your clinic day, 8 or 8:30. I elected for the 8:30 time slot…

…We checked in about 8:45.

Due to the construction happening around campus and the Children’s Hospital, the parking deck ramps were a little hard to find. Thankfully, Meghan stayed on the phone to guide us to our destination.

Just a heads up: The hospital is big! It’s not tall, but it is spread out. There are plenty of signs to follow though, so you don’t have to worry too much about getting lost.

So, after checking in and filling out the last bits of paperwork (before your appointment, you’ll receive a packet of papers that you’ll need to fill out), I had the privilege of being weighed for the first time in about ten years. This was probably the highlight of my day… because every woman loves finally knowing how much weight she’s really gained since college.

If you’re in a wheelchair like me, you’re weighed on this cool scale that has a ramp! You’re weighed together with the chair, and then you transfer to another seat so the nurse can weigh just the chair. From there it’s basic math to figure out your actual weight.

See? I’m just soooo happy to know my numbers.

You’ll then be escorted to the room you’ll be in for the rest of the day. Our’s was spacious with recliners and a sink!

Depending on who’s available at the time, because this same group of people will be taking turns meeting with other CMT patients, your day might be a little different from mine. While I was there, I said hello to three friends (one of whom I knew from Facebook and met her in person for the first time!) and saw another family in the waiting room.

After you’ve settled in, you’ll meet with Dr. Shy and his Fellow Doctor for a few minutes. Next, you’ll be introduced to the genetic counselor, Tiffany worked with me, who will give you a brief explanation on what to expect during your visit. As this is a teaching hospital, be aware that they will probably have 2-4 med students shadowing them. They won’t be with you the whole day, but if you’re uncomfortable for whatever reason, just let them know.

While speaking with the genetic counselor, you’ll be asked about your family history, if you have any questions, and what is the #1 thing you’re looking to get from your visit. My goal was to determine my exact type.

From that point on you’ll probably get a nerve conduction test done (Don’t worry! It’s not too bad when the person actually knows what they’re doing!), you’ll meet with the occupational therapist (Rachel gave me some helpful info!), the physical therapist, the orthodic guy (I met with Tim from Hanger), and have an hour or so for lunch somewhere in the middle of all that. You’ll also get a chance to meet with a representative from the Muscular Dystrophy Association (MDA).

Nerve conduction test

Me with Rachel

Follow the people to the food trucks!

Mom!

Cool sculpture on campus

By the way, Clinic Day also happens to be Food Truck Thursday… You’ll have so many options you won’t know what to choose! I would definitely recommend taking advantage of the food trucks and using the excursion as a chance to see some of the University of Iowa campus.

Toward the end of the day, you’ll meet with the genetic counselor again. This is where, if you’re not sure of your type, you’ll be asked if you want to get blood work done (eek!) to help determine your type exactly.

My terrified self when they asked me for blood.

I survived! It was still pretty weird.

If you elect not to do the blood work, she’ll discuss what type you’ve been observed to have and why they think that’s your type. I chose to get a more definitive answer with the blood work as it appears I may have one of two types! Who knew I’d be so complicated?

Other topics of discussion might be what you can expect in the future as CMT is a progressive disease, family planning options, and you’ll have a chance to ask any other questions that weren’t addressed before.

You’ll then wrap up your day by meeting again with Dr. Shy and he’ll go over the reports from everyone who worked with you during the day to make sure all your questions and needs have been addressed.

Me with Dr. Shy

In case you’re asking, “Where can I go for a clinic day?”

That’s a great question! If you have CMT, you can take advantage of the Charcot-Marie-Tooth Association’s Centers of Excellence. We have several here in the United States and a few more across the globe.

A map of the CMT Centers of Excellence

If you do not have CMT, but another type of neuromuscular disease, reach out to your local MDA organization to see what resources may be available to you.

Some tips:

• Go with your support team. The day will be long and can be overwhelming at times. It really helps to have another person with you, especially for your first visit.
• Go with a prepared list of questions. I went with several. Some of the questions were mine and some were from family members who couldn’t go with me. This can help calm any nerves and really helps you focus on what you want from your visit.
• Take water!
• Some of the hotels in Iowa City have a hospital discount that you can use when you book directly with them.
  • If you’re like us and don’t mind the quiet or the half hour drive, we stayed in Cedar Rapids and saw many cornfields.
• If you’ve had any sort of testing done before, try to bring a copy of the records with you or make sure to get them sent in.
• This is more of a suggestion, but if you can participate in any research studies or trials, be open to doing so. I donated some of my blood to help Dr. Shy with his studies.

Have you ever been to a clinic day? What advice would you offer? If you’ve never been to a clinic day, would you be interested in going to one?

Katerina’s World

So, I wonder if it speaks any to my character that, while trying to find a decent and recent picture of myself for this introduction, my phone was full of pictures like these?*

I’m Katerina. Ironically I was named after the German ice skater Katarina Witt… The farthest I ever walked on my own, without any type of support, was 12 little toddler steps. I was probably one of the toddliest toddlers you could ever meet.

Most parents assume their kids are special and that they’re the best… My parents weren’t allowed any doubt that I was special. So special in fact that it took several doctors two and a half years to figure out what was “wrong” with me.

I was three years old when a doctor was finally able to explain to my mom that, while I didn’t have the worst condition, things wouldn’t be easy, and he officially diagnosed me with the neuropathy known as Charcot-Marie-Tooth.

Another post will have a more in-depth telling of my CMT story, but the short story is this: I was a stubborn kid who didn’t want to be told what I couldn’t do and I have parents who still encourage me to do what I want. It took falling down and blacking out for me to agree to use a wheelchair (I was ten), but I only used it for short distances. I stopped being able to walk when I was about 15 and stopped being able to stand, even with help, by the time I was 20. I have some vocal chord paresis, so sometimes I kind of sound like a 12-year-old kid. But I also paint, I write, I’ve graduated a few times, I travel, and I try to help other people.

You’re going to see a lot about CMT and related things in my blog because I want to connect with others who have been through similar situations or who might be needing some encouragement to keep on truckin’. I do promise it won’t be all CMT all the time. We all have lives and our problems (whatever they are) are only small portions of them.

Other things you’ll be seeing here include, but are not limited to:

• Some art stuff (see below)
• Motivational things
• Stories about my trips
• Practical advice/ideas about handling day-to-day tasks (see my next post about my dream bra being a reality)
• Beautiful things

This blog exists because I went looking for one like it. There are so many wonderful fashion and beauty blogs out there, but I really wanted one from the perspective of the disabled woman (or differently abled, whatever floats your boat).** When Sundance premiered Push Girls it was amazing, because I could relate to their enthusiasm for life while also dealing with some of the unnecessary complexities that come with being physically challenged. But what finally encouraged me to get things going was this woman Jillian Mercado.

To close this post I want to mention Andrew Wyeth’s painting “Christina’s World”. Neurologists recently diagnosed Christina, the woman crawling in the painting, with Charcot-Marie-Tooth disease. Her spirit is what inspired Wyeth and what draws me to her story. She was much more stubborn, she refused to use a wheelchair at all during her life.

“Christina’s World” by Andrew Wyeth

“The challenge to me was to do justice to her extraordinary conquest of a life which most people would consider hopeless,” he wrote. “If in some small way I have been able in paint to make the viewer sense that her world may be limited physically but by no means spiritually, then I have achieved what I set out to do.” – (Reposted from 15 Things You Might Not Know About ‘Christina’s World’)

Thanks for checking out my blog! Hope you’ll keep coming back for more. 🙂

Yeah, I stuck a couple of footnotes down here.

*As you can see, I can’t take a selfie without wanting to share the moment. The first one is a silly moment on the way to seeing my new doctor whose life’s work revolves around understanding Charcot-Marie-Tooth Disease, the following two are of close moments spent with my niece, and the one on the bottom right is of me trying to share part of my view while visiting The Spiral Jetty in Utah.

**I’ve been known to call myself gimpy or cripple or handicapable.