charcot marie foot

"Symptoms, then are in reality nothing but the cry from suffering organs"
-Dr. Jean Martin Charcot

Ever since I can remember I've suffered from mid-sleep charlie horses. If you're not familiar with the term, I get cramps in my calves while I'm asleep. Yes, I said while I'm asleep. In complete and total pain is a very jarring way to wake up.

So you can imagine my surprise when, halfway through my very first marathon, both my calves started actively cramping. Calf and foot cramps, until that point, had been reserved for laying down and/or sleeping. But instead I found myself running (for over two hours) through the active cramping in my lower legs. When I finally finished the race, medics put ice bags on my calves. While that helped relieve the pain a bit, removing the ice resulted in two of the worst cramps of my life; charlie horses so painful I dropped to the ground, screaming and swearing uncontrollably and scaring the medics who had circled around me and my family. All I could think was, "I haven't had a calf cramp this bad since I was fifteen years old." And I probably hadn't.

Running a marathon (and smiling) while my legs are actively cramping

If you've never suffered from a calf cramp (or in my case, many many calf cramps), you are lucky. They are painful. I'm never sure when they'll start, I do not know how best to ease them, and I absolutely do not know how to prevent them.

I wasn't the only person in my household with this mysterious midnight pain. My brother also suffered from mid-sleep calf cramps (and was the one who first used the term "Charley horse" and taught me its meaning). Most of my memories of Dave's calf cramps were during his high school years. Despite being two and a half years younger than Dave, we would both suffer leg pain at the same time, often during the same night. While I would always choose to instantly grab my leg (or legs) and try to massage out the cramp, Dave chose another treatment; he'd try to stomp them out. Dave would suddenly jump out of bed and start stomping down on his leg. Once he was satisfied he'd gotten the cramp out, he'd fall right back onto his bed and into sleep. The number of times I woke up to the sound of Dave stomping his leg are too numerous to count. It was a typical occurrence in our home.

And clearly I still continue to get these cramps. What's interesting to me it that there is very little known about WHY I get searing pain in my calf muscles that wake me up. I have been told about any number of possible causes of my distress, but none of them make any sense. Everyone seems to offer up an unsolicited solutions to this problem. First up, lack of potassium. Sorry friends, but I am absolutely 100% not potassium deficient. It's not the culprit. Trust me; I have my potassium level checked every six months (an unrelated concern). More potassium will not eliminate my cramps; I could eat all the bananas in the world and not get better.

The suggestion that dehydration is to blame for my charlie horses is much more believable. I don't drink enough. I try, especially with all the running I do. But I am always thirsty, most especially in the middle of the night. So I drink a lot. And I pee a lot. And I drink a lot more. But I never feel hydrated.

During my post-marathon calf cramp fit, my mom offered up some life changing information; calf and foot cramping is a symptom of Charcot Marie Tooth disease. Charcot Marie Tooth (CMT) comprises a group of disorders passed down through families that affect the nerves outside the brain and spine; aka the peripheral nerves. I know, it's an odd name for a foot disease (actually it's foot and hand). But it's named after the three doctors (Charcot, Marie, and Tooth) who discovered it. Several members of my family suffer from CMTX, the x-linked form of the disease.

After the marathon I had truly reached my breaking point. My feet had been hurting so bad for so long I had to finally see a podiatrist. Four days later I had the official diagnosis; I have Charcot Marie Tooth. I wish I could say I'm not devastated. But I am. Why else would I have avoided the podiatrist for twenty years? Up until last week I had still hoped I'd hear, "new shoes will fix your chronic foot pain." But they won't. Foot pain is a part of me. Most of the people close to me know my feet hurt every single day. Some days I run with the pain. Other days I run through the pain. But most of the time, I run despite the pain.

Packing for a marathon includes lots of 2nd skin bandages

So what does this mean for a (now official) marathoner? Of course I had to ask my doctor about the running. Would I have to give it up? The short answer is no. With lots of orthotics. And maybe surgery. But first orthotics, lots and lots of orthotics. And new shoes. And stretches. And special exercises. And the frozen water bottle under the foot trick that I promise alleviates plantar fasciitis.

Many people prefer to keep their CMT on the down low. In their defense, the symptoms can become very dehabilitating, especially for men. But I'm putting it out there; I am a marathon runner with CMT. Because I want you to know. And to understand. If we're out walking together, I'd like you to slow down. And when we're out on a hike, the pain might become so unbearable for me we have to either stop for a while or immediately turn back. But the pain won't stop me. I will continue to go out and run. And maybe even hike once and a while. And maybe, just maybe, someday I'll run another marathon. After all, "few things in life match the thrill of a marathon." (Fred Lebow, runner and founder of the NYC Marathon). Mr. Lebow, I completely agree.

I'm already thinking about my next marathon...

got friends?

I recently found myself in the middle of a sociological experiment. And I'm thrilled it turned out to be an actual empirical experiment, complete with controls, data collection, and results. But I'm getting ahead of myself.

The Competition:
Because I can't divulge the details, I'll explain what happened like this: I promised to help a company get votes. This has actually happened to me a few times in the past year. Social media presence is becoming more and more prevalent in our work environments.

If you spend any amount of time online, you've probably also seen ads asking you to vote for an emerging small business trying to win BIG money from any number of business grants. These contests are neat ideas; they have launched some super awesome businesses (as well as some less than stellar ones).

But getting people to vote for a company is not easy. I knew it wouldn't be, but I also had no idea just how hard it would turn out to be. I quickly made my way through all the people I know personally and individually asked every single one of them vote (as many times as possible). And they did. I am honored to call these people my friends. Hundreds of people stepped up to the plate simply because I asked them too. Incredible, yes, but unfortunately not good enough. So next, I tweeted about the vote. I posted it on LinkedIn (and made ALL of these posts public). Yes, I even used Google+, which I'm honestly still not sure how to use.

Then the company searching for votes decided to put some money into the project. It paid Facebook to sponsor the vote getting posts. This means Facebook will put the post on the walls of your friends' friends. Supposedly over 1500 people saw our ads on their Facebook walls. How many votes do you think this got us? I bet you can venture an educated guess.

At the end of a long vote getting day my boyfriend saw me struggling. I had exhausted every personal relationship I had. Who else could I turn to? I'd have to rely on the virtual kindness of strangers. But I kept circling back to the why; why would an online stranger help our company? The truth is, he or she won't. 

So that led me right back to reality. To real people. And then my boyfriend came up with one hell of a "get the vote out" campaign. After giving me his own long-winded explanation of human behavior, his point was that he thoroughly believed a quid pro quo campaign was where we'd get those final votes to come in. So we decided to give his plan a try; we'd offer something back to actual complete strangers.

So first I baked cookies. Then I went out in public and asked people to vote. At the same time (or usually after speaking with a passersby) I was handing out cookies to anyone who wanted one.

I had NO idea if this plan would work. Or if I would get thrown out of the park. Or possibly even arrested. Would strangers actually accept a cookie baked in a total stranger's home? Perhaps I should have brought store bought cookies instead. In the end, I ended up baking snickerdoodle and oatmeal chocolate chip cookies. I made a sign. I generated a QR code. I made stickers. And I placed each cookie in an individual cupcake holder (Costco sample style). I had a stack of napkins. I was going to give it a shot.

The Results:
In the end, we spent $15 promoting the competition on social media sites. 
Conveniently, I also spent $15 buying the raw ingredients to bake the cookies.

Thus, I found myself facing an equal opportunity investment plan with differing strategies. Lining up the digital world vs the real world, which one do you think came out ahead with procuring votes for an unknown company?

According to The Fundraising Manager, "relationships matter." And never have I realized just how much they do matter until I had to reach out to every personal relationship I have.

How did the marketing fare? By the numbers, the promotion of the site to 1500 strangers led to zero votes. Yep, no additional votes.

Standing on the street for 4 hours led to 20 votes. Yes, 20 votes! It doesn't seem like a lot (I got hundreds by asking people I knew), but when you're looking at the amount of votes received by unknown persons, a human interaction makes a difference. 

So there you have it. Go out and bug somebody. They might just listen to you. And if you're lucky, they'll even cast a vote for you. Don't sit at home sending generic requests out into cyberspace. Unless you want to have exactly no more friends than you did before you started. 

This Forbes article is so helpful! Here's why asking for votes while handing out free cookies is more effective than just asking.  http://www.forbes.com/sites/jaysondemers/2014/03/27/5-reasons-why-your-social-media-campaign-isnt-working/

homework

"To steal ideas from one person is plagiarism; to steal from many is research.”

― Steven Wright

I recently began applying for jobs, and I've gotten pretty good at it. I have gone through all the motions, from meeting with a career counselor, to networking myself through everyone I know (and may know) thanks to LinkedIn. I have applied for too many jobs to count, but I'm getting responses. Over the past four weeks I have averaged four interviews every week. I'm talking about all kinds of interviews, from informational to in-person.

This is a very time consuming process, mostly because each interaction requires scheduling, research, and time. I take each interview pretty seriously. Until I don't. Because, inevitably, something in the process will rub me the wrong way. No longer being interested in the position, not being able to come to a consensus on salary, or not wanting to work with the staff are all very solid reasons not to take a job. I have used all these reasons to withdraw my candidacy from consideration. But I have also come across one more reason to run away from any given job opportunity. And that is when I'm given too much homework.

I know it has been a few years since I've set out to seek full time employment, but since when has it been okay for employers to take advantage of candidates? I am actually shocked at the amount of work I have been asked to complete throughout various stages of interviewing.

https://jobmob.co.il/blog/funny-ikea-job-interview-cartoon/

Two recent instances have stuck in my craw. The first was an interview granted with a wonderful educational organization. Before I even spoke to anyone about this position, I was sent a letter (in the mail) with two items. One was a parking pass for my scheduled interview date and time. And the second was a request to give a one-hour presentation to a board of representatives at the organization. The presentation topic? A complete proposal for a multi-year $250,000 grant, based on the type of programming the organization runs. But I didn't know what type of programs the organization runs. It's not apparent on their non-existent website. I hadn't even spoken with anyone at the organization about the position, let alone what would be beneficial to it. I was extremely frustrated.

But that's not what upset me the most. The most ridiculous part of this assignment was for me to do the work for the organization. If I were to write an incredible multi-year grant proposal under any other circumstances, I would be appropriately compensated. Actually, I have been compensated for this type of work for over ten years now. I am not going to give away my secret grant-writing formula for free, no matter how much I want the job. In the end, I called the organization, left a voice-mail, and bowed out of the interview process. Mostly because I don't want to write grants full time, so it's clearly not the right position nor the best fit organization for me. But also because I was not going to do the work they inappropriately asked of me.

 http://www.snotm.com/2011/05/69-never-work-for-free.html

The second homework assignment I received recently was to plan an event for an organization I had been currently interviewing with. I understand the idea of raising the expectations for a candidate in a second round of interviews. But asking me to present my complete event proposal for an event that will be happening early next year is just an absolute abuse of power. Again, asking for all my ideas and taking them to plan an event is not an ethical way to work. It's not how I work. And I wouldn't work for an organization that treated others this way.

http://www.statusant.com/

What is acceptable is the following: arrive at said interview with a few concrete ideas to discuss, Then, the organization hires me, and I complete said ideas. Sounds like a pretty awesome plan. On the other hand, for me to present to the organization's entire staff for over an hour, lay out how I'd secure each vendor and contact each vendor for an upcoming event is the very definition of work. Again, I'd expect to be compensated. This is true event planning/consulting work. And it is usually accompanied by a large amount of monetary compensation. 

In the end, I wanted the position at this second organization, so I did the work. I presented my event plan, complete with budget templates and event checklists. But the truth is that my heart wasn't in the proposal. No longer did I hope for a job offer at this organization. The idea of free labor is what I expected to provide over twelve years ago when I was an intern. A decade later, I've got two degrees and a world of experience. 

http://filmmakeriq.com/2012/04/do-not-work-for-free-for-exposure-the-wrap/

Let me make sure I am clear about one thing: I am not saying every time I use my skill set, I should be compensated. I'm not saying that at all. Anyone who knows me knows that I use my knowledge, experience, and passion for good. I am currently writing grants, raising money, designing websites, planning events, and even training a student on the grant-writing process, all for free. I am a volunteer. I am happy to help. But there is a very distinct line for me between being a volunteer and being taken advantage of. When I'm working, there is the expectation of monetary compensation. When I am volunteering, I receive a reward of the non-monetary kind. And that works for me. But I'm not talking about the volunteer part of my life. I'm talking about my livelihood, the money I use to pay my rent, and eat, and pay the internet bill so I can afford to post this blog online.

Plus, it's not an all or nothing job interview homework mentality I'm holding. For instance, I am not against skill set exercises. One company asked me to complete a data merge and collate said data, drawing conclusions based on the data. This exercise took 20 minutes and I was happy to do it. Apparently my Excel skills passed the test, because I was asked to come in for a second interview. Score!

But what surprised me about this data collation activity was the simplicity of the exercise. Granted, I needed to use equations across multiple spreadsheets, but in the event that I wasn't sure how to do this, I could have always used Google. It is common practice for most people I know; if you don't know something, or need to fix something, or have a general question about how anything works, you get on your computer (or phone, or tablet) and Google it. Then you have your answer. I suppose a better test of my skills as a potential employee would have been to ask me, "if we asked you to create pivot tables in an Excel document and you don't know how, what would you do?" I could quickly answer, "I'd Google the question and teach myself the answer." There you go. Clearly I can learn anything I don't know how to do. I am industrious. I will make an awesome employee.

I have used this tactic before. Haven't we all? During a phone interview I actually said I knew how to create pivot tables. The night before I went in to the in-person interview, knowing I'd have to speak specifically on the pivot table topic, possibly even tested on it, I taught myself pivot tables. I know how to use the internet, a skill which will, no doubt, help me secure my next full time gig. In the meantime, just don't ask me to solve your company's issues for free. You'll have to hire me first.

Here is Forbes Magazine's approach to job interview homework: http://www.forbes.com/sites/dailymuse/2014/05/29/what-every-job-seeker-should-know-about-work-assignments-during-the-interview-process/

anonymous

I have been applying for jobs. And before every job interview, whether initial phone conversation or in-person, I do some company research. In the past, this has typically involved looking at the company's website, reading more in depth about the job opening/qualifications, and taking a cursory glance at the staff member listing.
But recently I have begun to take my interview preparations one step further: I search out the person I am interviewing with. I not only Google the person, find him or her on the company webpage, and check out a LinkedIn profile, but I really look into the person. I find my interviewer on Facebook, read any article written about him or her, search for press releases, and even Google image search for head-shots. I like to know who I'm going to be speaking (and possibly working) with. I have gone so far in my due diligence that once I actually predicted a director would be leaving the company (I was interviewing to be her replacement) to go on to graduate school. When I mentioned this in the interview, she said I was the second person to make that connection. I guess my behavior is pretty normal.

Which is the main point my internet research is beginning to make clear; I will find out about you. When I worked at my former company, I would search for the current addresses of individual donors who had recently moved. Nine times out of ten, I would find the donor's new address, along with how much she paid for her house, the names of her children, and the city she was born in. I know that sounds creepy, but it was all just to send out an annual appeal letter to the correct address. I did develop a reputation among my co-workers for being able to find anyone, though. But that's because it's easy to be found.
And it is now the norm. I remember interviewing roommates years ago. I'd search out each candidate on social media sites. The same thing was true with someone I was going on a date with, or even with simple acquaintances. I now try to limit my internet stalking for job interviews, as I cannot confidently enter into the interview unprepared. But we all know that being given access to someone's complete and legal name is a free pass to search out the person via Google.

I used to think that it was possible and easy to live off the grid. If you don't want someone to find you, stay off the internet; don't join any social media sites and don't give your name to articles/quotations that may be published about you. While I welcome comments on my blog posts, beware of publishing anything with your full name. You never know what I might (and will) find about you.

I just found out that "off the grid" no longer means what I thought it did; "off grid" now refers to the millions of people living locally. Off Grid is one, among many, such website that includes various bloggers giving tips on how to live locally. Except in the state of Florida, where living off grid illegal. All homes must now be connected to a utility grid. This means all residents must be connected to a system and pay into this system. No more hiding in a cabin the woods, or not having a physical address to receive mail and bills. Everyone leaves a footprint. And there are millions of us on the other end, tracking it.
Not to scare you. I only use my internet stalking powers for good. To get to know you before meeting you and trying to convince you to hire/date/live with me. This is completely normal behavior; and actually, almost to be expected. Almost.

So while there is a fine line between cyber-stalking and conducting research, every single job search website lists researching your interviewers by finding bios and social network links as a "must do." Idealist, Monster, and Indeed specifically recommend, "You may find bio pages or press releases that give you insight into their most visible activities at the company. Then look to LinkedIn or do a general Web search to get some more background information about them." That looks like a green light to continue preparing myself in this fashion for upcoming interviews. But perhaps I'll put my default to research everyone mentality aside. And let real life people show me who they are.

To read more about acceptable job interview preparations, check out: http://career-advice.monster.com/job-interview/interview-preparation/interview-company-research/article.aspx

app obsession

I have too many mobile apps on my phone. Or perhaps I don't have enough phone memory. Either way, I frequently find myself running low on phone space. Because I like apps. Well, to be more specific, I like the concept of apps. I like learning about new apps. I like searching for new apps. I like reading reviews of new apps.

Oxford Dictionary Definition of an App

But then I never actually use these apps. Okay, it's not true to say that I NEVER use the apps. I like Yelp. And Facebook. And Instagram. But have I even once opened Yerdle? No. But I might. You never know, it could come in handy. I might suddenly decide to trade something online. So, I'll just keep the app for now.

Yerdle

But I'm running out of memory. Darn 16GB iPhone. Why must I have to delete a selection of already downloaded apps? What if some day my contacts all move to TextMe and I'm behind because I don't have it? Or what if I really want to use Khan Academy and I can't just type "Khan Academy" into a browser on my phone? What will I do then? It'll be a godsend that I already downloaded the app. Wait, what folder did I place it in again? Eeh, I'll just go to Safari and type in the website. This is fastest, and I already have Safari open...

Which begs the question: Are apps even all that important? Or do they just make my phone look busy? And pretty? I have at least 50 apps I'll never use. I'm not exaggerating. I won't join Yerdle. Or TextMe. Or even Blinkist. But I just read about Blinkist. It's supposed to be awesome. If only I could remember what the app does. Oh well, I'll just leave it on my phone for now.

Blinkist: An app about books, maybe? Or blinking?

I checked online to see if my behavior is out of the ordinary. It turns out I am just like all other mobile technology users. Yahoo says that, "between 80 and 90 percent of apps are downloaded, used once, and eventually deleted by users. But deletion often comes only when your device is performing so poorly that a massive overhaul is necessary." Good thing I still have my Yahoo app to research my behavior.

I think it's time to bite the bullet and delete some of these never been used apps. It's true that too many apps slow down your phone. So, goodbye Lens Ink Free. I have no use for you, Symbol. Ohh, but Symbol offers accents. So maybe I won't delete them just yet. I no longer need Cell Splat (I never did), but I'll keep Words with Friends. In my case, it should just be called Words with Mother. She's the only person I play.

And I am not allowing myself to download any new apps this month. Ooh, but I just read really good reviews on the Royal Baby App. So maybe just that one is okay. I'll use it for sure. Princess Kate may be having twins.

You can download the royal baby app here: http://royal-baby-app.en.softonic.com/iphone

writing season

My first few weeks of unemployment didn't really feel like unemployment. Between travel, travel, and more travel, every day was filled with some sort of meeting, obligation, or deadline. For the past four weeks I have longed for a true unemployment day - nowhere to be, nowhere to go. A "holy shit, I'm unemployed" realization day. I took that day, and I'm bored already. Or rather, I'm ready to get back to work. 

I'm beginning to realize that unemployment = time. It is completely up to me how I spend my time. Right now, I spend it writing.

Because I have to write a business plan. Not just any business plan; the plan for my start-up company. There are a lot of firsts along with writing this plan. My first start-up. My first market testing. My first move into Venture Capital. My first investment. My first for profit company. But not my first partnership, not my first passion project, and not my first venture into the unknown. Just my first real business plan.

So, I sit at home and write. I sit in the coffee shop and write. I sit in the library and write. I sit outside (when my computer is charged) and write.

Writing something as long as a business plan requires stamina. There are no quick emails sent out, no quick feedback, and no quick phone calls. There is definitely no stopping by a co-worker's cubicle to ask her a quick question. 

Instead, I write and write. And then I look for something else to do. Most of my day is now spent alone, writing. And drinking coffee. And surfing the internet while thinking. And texting/sending instant messages to have some way to communicate with other people during the day.

Currently, business planning is enough for me. But I can tell that sometime soon I'll look forward to heading into a job, complete with meetings, deadlines, constant email communication, and even being judged by someone else's standards. But that's some day. 

For now, I've got to work on this all consuming business plan...

life before technology

I took part in a sociological study; one that I think about often.

In the village I called home from 2004-2006, a few of my neighbors had
televisions – and cable. What kind of cable tv worked out into the rural
countryside of Honduras? I don't know. What I do know is that one single cable
made its way into my village, and snaked it's way throughout the more posh
parts of town (some streets had nice houses, while others had shacks with no
electricity). 

What's important about this "cable" is that what it truly brought with
it was Telenovelas. If you aren't familiar with a Telenovela, a Spanish soap
opera, it's a 5-6 month long saga that plays out for one hour, four nights a
week (Monday-Thursday).

Here is the opening from one of my town's favorite Novelas: Rubí. It was quite
addictive, honestly.



With the injection of a steady stream of Telenovelas into Pulperias up and down my street, I witnessed dramatic changes. Changes in behavior and vocabulary. Changes in teenage drama and a staggering increase in teen pregnancy rates.

I saw a direct link between the plotlines of these Novelas, and the dramatic issues the teens in my town would complain about. How did I know their problems were Novela driven? 

Let's take a look at the plot of Rubí: Rubí starts dating Alejandro, but when she finds out that he comes from a middle-class background and is not rich, she decides to dump him. She then decides to seduce Héctor, who is wealthy but engaged to a friend. When Hector dumps his fiance, and marries Rubí, she decides several years later she wants Alejandro, because he is now rich (she even kills Alejandro's fiance). These were not the problems common to the teenagers in a rural Honduran village. But they were now the exact problems the students (many my students) would complain about. So and so is rich (a ridiculous concept in Gualaco) and must be "seduced". I could hear the students repeating lines from Rubí verbatim. How did I know? I watched Rubí for background.

What I want to know now is this: what has technology brought and changed? Are the inhabitants of Latin American villages smarter, now that they are "more educated"? Are students who have never set foot outside the village more worldly now? Are their babies healthier because they can look up answers to common infant illnesses?

Or have computers (and the internet) just brought easier, more universal access to Novelas? Are students concentrating on teenage drama and sex scandals more than homework assignments? Haven't Americans been caught doing the same? Perhaps technology really does even the playing field. We can all spy on Kate Middleton bathing nude, if we so choose. We can spend our hard earned Pesos on an hour of internet, instead of on a Coca Cola. There isn't any more money in my village, just another way to spend it. 

I can't wait to see how the Mayan students of the Yucatan choose to spend their limited (albeit no cost) internet search time. Will they look up maps of the world, answer math problems, sign onto Kahn Academy, or read books online? Will they watch YouTube and Vine and Telemundo? Or will they do all these things? I have my suspicions (social networking - but which ones?) 

I can't wait to see how life before computers becomes a fading memory.