29 March 2016

Running The Boston Marathon — Together

Running for Rare pairs up runners and rare disease community members to raise rare disease awareness and raise funds for the the National Organization for Rare Disorders, Inc. (NORD) and National Institutes of Health (NIH) Undiagnosed Diseases Program. 
As a fibromuscular dysplasia patient, I have been fortunate to be a patient partner for two years now — first with Jessi Colund in 2015 and now with Martha Staples. I am humbled to be a source of inspiration for these women who have put in mile after mile and will be at the starting line for the 120th Boston Marathon bright and early on April 18, 2016.  
I am not a runner. I never have been, and I don't anticipate I ever will be. A physiatrist friend of mine is recommending I start a program of "vigorous walking" for five minutes a day for four to seven days and then doubling that to 10 minutes a day. He wants my heart rate up. I told him that unloading my groceries gets my heart rate up. It's a matter of stubborn chicken and stubborn egg. If I exercised more, perhaps I wouldn't tire so easily, but I tire so easily, so I don't want to exercise more. A.K.A. — it's hard, I don't want to do it, please wave a magic wand. When I invent the magic wand, I'll be sure to let you know. 

Martha and I have been getting to know one another through email, Facebook, and phone calls, and we wanted to share a bit about ourselves and our partnership with those who may also be runners or rare disease patients. 

Name: Martha Stapels
Age: 39
Job: Principal Scientist (Chemist who analyzes proteins)
Years Running: 4 years in grad school, 10 year hiatus, 4 years since, so 8 years total
Years with Running for Rare: 2 years
Longest Run to Date: 28 Miles!!!
Marathons Already Completed: 5 (Portland, OR 2002, Baystate 2014, Boston 2015, Grandma’s 2015, and Marine Corps 2015)
Why Are You Running: To raise money and awareness about rare diseases and to inspire my kids to dare to try hard things.
1) Tell me about a time when you wanted to give up — but didn't — and what it was that drove you onward.
There is always a point in a long run that I want to give up. I try to think about strong runners who inspire me, my kids, my friends, my family, my patient partner, my running coach. Honestly, doing scientific research is very similar to running a marathon. It’s a long slow process and more often than not, things don’t work the first time. Being part of a team helps, and trying to move things forward every day is the only way to make progress. Thinking of who you’re working (or running) for really helps when you want to give up.
2) What is your personal motto?
Courage without fear
3) For what in your life are you most grateful?
I have two beautiful, smart, amazing, healthy, funny kids.
4) What are three songs that make you feel good no matter what?
5) Assume have have unlimited resources and no limitations of any kind (time, money, distance, companionship, family/child care, etc). What would you most like to do?
Travel and run all over the world. Experience all of the beautiful beaches. Take my kids to see amazing waterfalls.

Name: Sarah E. Kucharski
Age: 35
Job: Coordinator of ePatient Programs at Stanford Medicine X; independent consultant
Years Running: 0
Years with Running for Rare: 2 years
Longest Run to Date: I ran the mile back in grade school for the Presidential Fitness Test.
Marathons Already Completed: 0
Why Are You a R4R Patient Partner: The physical and mental fortitude it takes to run just amazes me. I admire runners' drive to carry on past the pain. Such ability is something I hear echoed in the rare disease community, as so many patients have no cure and no treatment but persevere.
1) Tell me about a time when you wanted to give up — but didn't — and what it was that drove you onward.
After I had a stroke at age 27 and was working part-time, I decided to go to grad school. My program required one science course. The course offered at the time was online and about biorhythms. The professor was out for the semester and had left teaching to an assistant. I'm a good student. When I — and a majority of other students — failed the first few assignments, it was clear that something was amiss, but to make matters worse we only received our failing grades after the course's drop date. Even though offered an exception to the drop date, I was in a bind. Another science offering for the program wouldn't be until two semesters away and thus delay my graduation. I used my frustration and anger as a catalyst. I studied, learned how to speak the language the TA wanted, helped other students as much as possible, and learned from others. I resented that the material in and of itself wasn't that hard and that the TA wasn't grading on whether students understood the material — just whether they could regurgitate what they had been told. In the end, I passed the class with an A, and followed up with administration to improve the course and the program overall for future students. 
2) What is your personal motto?
"Many times in your life you may feel that you are failing, but ultimately you will express yourself, and that expression will justify your life." — from Irvine Stone's Lust for Life
3) For what in your life are you most grateful?
I absolutely treasure my parents. They are my advisors, my confidants, my friends. I admire them for their values and the strength and courage they have shown in being MY parents. While being such incredible supporters, they also have allowed themselves to be emotionally vulnerable, which has helped us get to know one another as individuals. 
4) What are three songs that make you feel good no matter what?
5) Assume have have unlimited resources and no limitations of any kind (time, money, distance, companionship, family/child care, etc). What would you most like to do?
I've been working on a bucket list for several years. I've been fortunate to check off many things on that list, while some have been scratched off for other reasons and new things added. The top three things on that list are 1) pet a tiger 2) get more than a magazine article published — preferably a book 3) write a book. 

Help me recognize Martha's dedication and efforts to make a difference in the rare disease community by making a donation to her fundraising page, available via Crowdrise.com at http://bit.ly/1TbgUbE.

16 April 2015

Owning Up — Or — I Know How Nicholas Sparks Feels

Speeches, soundbites, video clips, indelible images — memories mapped to become mementos in and of themselves. What if we don’t want to remember? What if we need no reminder to be unable to forget?

Two and a half years ago, I stood on a public stage and put my marriage on a pedestal, a shining example of how patients and caregivers should be together. Every word was true. For all intents and purposes and for what it was worth, our relationship was far from the worst, which makes it harder to pinpoint exactly how, when and why it failed.

Neither points fingers or at least we know the adage — “point one finger at me and three more point back at you.” We did pretty damn well. We could have done things better. We made assumptions. We didn’t allow for change. And now we no longer live together.

It’s been five months since the separation, and it will be another seven months before a judge will grant a divorce. (The South likes to make such things more difficult than they already are.) We’ve agreed to do together as much of our coming apart as we can, which has confounded loan agents and real estate attorneys, but neither of us knows how to go through something hard without the other one. It is… complicated.

I am mad at him. I am mad for him.
My husband and I are divorcing. My friend is losing his wife. 
The only redemption comes in that two friends do not have to lose one another. 

At least not yet.
At least not yet.

Because he knows me. And I know him. 
Because we have learned so much from all we have gone through together as husband and wife, caregiver and patient. 
Because the very things that made us strong as individuals — independence, persistence, doggedness — were detrimental to us as a couple. 
Because we did the best we could. 
Because we deserve a happy ending. 

Which we don’t know what looks like yet.

He’s been painting what was once our bedroom — rose and warm gold covered over with dark mustard and "greige." He says it’s beachy. I say it’s nautical. We know we both drifted away.

24 December 2014

Hurt Society: Planes, Trains & Automobiles — ePatient Travel Edition

My relationship with planes has changed over the years. I remember being little enough to curl up like a cat in my single seat and eventually having to stretch out to put my head in my mother's lap.

Trains have been much more of a novelty. As industry routes and freight trains once loaded with logs and coal have given way to cute touristy things and railway beds reclaimed as greenways, we have lost much of our connection to this great American mechanization.

As an only child, I always had the backseat to myself whenever we took family road trips, which may well be what lead to my penchant for naps, as a set of headphones and a pillow did much to block out the crackling AM sports radio to which my father always listened.

Regardless of the method, it's always held that so long as I have a window and music, I can travel for hours.

When I began flying on a regular basis for my advocacy work, I made one other small investment — ear plugs. I had no idea the difference they would make. Like my headphones, the ear plugs served to block things out. Crying babies, loud talkers, engine noise, and ill-timed pilot announcements ceased to exist. Suddenly I was so much less exhausted after my cross-country flights. Many of my days are spent working in near total silence, save for the cats thundering past, having received random signals from the feline planet and a collection of clock ticks and chimes. An airplane's constant droning roar was too much. It wore me down. It wore me out.

The downside to ear plugs is that others generally can not tell when one is wearing them, so an earnest attempt at conversation can lead to being misconstrued as rude. Note — it's not that I'm not paying attention to you; it's that I very purposefully have chosen not to hear you.

Given the holidays, many patients (and others) have travel slated. Seeing family and friends may have great sentimental appeal, but its reality is much more complex. If one has gotten a job, lost a job, gained weight, lost weight, dumped a lover or found one, bought a house or sold one, had surgery or opted out of one, started a new medication or stopped an old one; or any other combination that basically translates to living, my own advice about going to see those aforementioned friends and family involves deep breathing, happy place visualization, lots of tongue biting, and comfortable shoes to enable nice long walks. As the great Mick Jagger once said, we can't always get what we want, but we may well get what we need — a new perspective.

With that in mind come the following posts:

What can each of us do to help when we see someone who is having a tough time, even if they don’t look sick?
Susannah Fox

Make life easier for yourself when you travel by accepting help that is available, strategizing before you leave, asking for reasonable accommodations for problems that arise, and trying to keep the weight of your luggage down. Also contains a few specific ideas to make travel less trouble.

The Transportation Security Administration can be friendly, provided one is willing to jump through certain hoops. 
Matthew Charron

All disabilities are not visible — but one mom to a rare disease patient explains that discrimination against invisible disabilities can be entirely less than subtle.
Melissa Hogan

Plan ahead to avoid common travel problems such as sleepiness and stiffness.
Mayo Clinic

Speaking of sleepiness and stiffness... here are some tips about sleeping in an airport.
Outside Online

And when it comes to flying, take this quiz to evaluate your savviness.
Outside Online

18 November 2014

Hurt Society Blog Carnival Call: ePatient Travel Edition

Fellow advocate HurtBlogger and I have been traveling a lot lately — cross country flights, multiple hotel room nights, long drives, public transportation, business and pleasure. All the travel takes its toll. We aren't always as rested as we should be, perhaps have always eaten the best, have logged too many steps, or carried too many things. But our advocacy work is important enough that we are willing to make certain sacrifices in order to represent.

This week she and I have met in San Francisco for a rare day of rest and relaxation prior to a Medicine X planning session. Although she lives in Southern California and I in Western North Carolina, our meeting comes on the heels of trip to Boston and Philly — her for the American College of Rheumatology and me for the American Society of Nephrology. Catching up this morning over breakfast, we discussed our travels. We didn't focus on sights we'd seen or foods we'd eaten. Frankly those kinds of things are rather low on the list compared to networking and learning.

Instead we lamented the physical demands of traveling and dealing with an industry — though often called "hospitality" — that is less than patient-friendly. I've heard more stories in the past two years about patients with invisible disabilities being disbelieved and harassed while seeking needed accommodations such as extra time to board a flight, a room with a refrigerator for medication and nutrition or assistance carrying luggage. Many such things can be had by paying more money, but as patients know — problems most easily solved by throwing money at them are the ones that present some of our greatest challenges.

How might we better address these challenges? As individual advocates, we and many others have voiced our concerns and pointed out problems — but that doesn't mean that we've been successful in making it easier for others. So we're launching an offensive. In preparation for the holidays' busy travel period, HurtBlogger and I are joining forces to bring you the Hurt Society Blog Carnival ePatient Travel Edition that will pull together posts highlighting what it's like to travel as a patient.

We want to hear from you. This isn't just about venting — it's about calling out bad policies and proposing solutions; it's about recognizing those who are getting it right and holding them up as shining examples; it's about sharing tips to help others survive whether that's enrolling in TSA's Pre-Check program or finding hotels with free breakfasts.

Submit your post to us for review and possible inclusion by noon (Pacific) on Saturday, Nov. 21. Be sure to format your submission with the following:

Post Title:
Blog Title:
Twitter Handle:
1-3 Sentence Post Summary: 

Note: perhaps you are not interested in writing a post of your own but know of one that has provided you with valuable tips. Send it to us!

Look for the Hurt Society Blog Carnival ePatient Travel Edition to post this holiday season.