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It's All About Connections: Find Your Tribe!

My daughter Ella and I jumped, climbed, crawled, rolled, and swam in mud last weekend, surrounded by MS Warriors and supporters, as proud participants in Muckfest MS - Dallas. 

"I don't know ANYONE with MS." That's what I thought, soon after learning about my own diagnosis, almost nine years ago. Even as a doctor, I had only seen two or three patients over the years with MS, and our contact was brief. My diagnosis seemed so random, so rare.

 

A diagnosis with MS, like many other chronic diseases, can feel devastating – and very, very lonely. Yet one of the early surprises that I discovered soon after my diagnosis is that MS is COMMON. New estimates suggest that nearly one million people in the U.S. may have MS.

 

We, the MS Warriors, are out there!

 

Why do we seem scarce? Because signs and symptoms of MS are widely variable and often invisible. I have intermittent dizziness, leg numbness, and cloudy vision, but no one can tell. I try to ignore my symptoms; I still work and go grocery shopping and run and argue with my kids.

 

But connecting with others, finding my tribe of fellow Warriors, has been a gift, especially at the time of my diagnosis, and again over the last several months.

 

After I shared my news with others, soon after my diagnosis, suddenly I was surrounded by fellow MSers: a friend of a friend, the mother of one of my daughter's classmates, a colleague, a nurse at the hospital where my husband Don works, even one of the doctors who helped provide my early medical care. Their generosity, as they shared their stories and offered encouragement, lifted my spirits during one of the darkest times of my life.

 

The BP MS150 bike ride in April, the National MS Society's (NMSS) Texas Legislative Day last month, and the MuckFest MS in Dallas last weekend brought me back together with MS advocates, and even more importantly, with my fellow MS Warriors - that unique group who can rattle off names of the disease-modifying drugs for MS (Copaxone-Rebif-Gilenya-Tysabri-Ocrevus…), share stories of our initial diagnoses which often start with "I thought I had a brain tumor…," and offer inspiration and support from a place of profound understanding.

 

We are out there, and we are strong.

 

If you are facing a new diagnosis of MS – or any chronic disease – I urge you to reach out to others with your condition. For those with MS, the NMSS is a valuable resource, providing support services and learning sessions across the country. Those with other chronic diseases can usually find support through similar organizations (American Diabetes Association, Arthritis Foundation, Alzheimer's Association, etc.) On-line communities can provide support as well, as I've learned through writing for Quora and connections on Facebook and Twitter. I've also been inspired by fellow MS bloggers.

 

Connecting with others is a way to share the burden of a chronic illness – and also to share hope.

 
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Multiple Sclerosis: My Story

I gave the keynote address at the BP MS150 Austin celebration.

I was honored this evening to deliver the keynote address for the BP MS150 Austin celebration. I have written my story, but I haven't often spoken about it, so this was a fairly new experience for me. Here is my story as I told it today to MS150 cyclists, volunteers, and supporters:

 

I woke up on November 2, 2009 with dizziness. I remember the exact date because it was two days before my daughter Clara's second birthday. I thought I was getting a cold, and I tried to ignore it all week. I'm a family doctor, and I tried to keep up my usual schedule seeing patients and teaching students who rotated through my clinic. I tried to take care of my kids, Ella and Clara. They were two and four – not exactly independent.

 

The dizziness was constant. Nothing made it better or worse. I kept expecting it to turn into a respiratory infection or the flu, but instead I started getting other weird symptoms like double vision and taste changes. Like a lot of people with undiagnosed MS, I thought I must have a brain tumor. Even as a doctor, I couldn't come up with any other diagnosis to explain my symptoms.

 

When I got an MRI that was highly suspicious for MS, I was shocked. I was 36 years old. I was a health nut, a vegetarian. I exercised every day. I shopped at Whole Foods. I had no family history of MS or other autoimmune diseases.

 

And I remembered the first person I had met with MS. When I was a medical student in the mid 1990s, I met a man with progressive MS who was admitted by my team to the hospital with an intestinal obstruction. He was in excruciating pain, and severely debilitated – rigid, unable to work, and barely able to move. He must have required near constant nursing care, even before he came to the hospital.

 

I realized that I could end up like my patient. And after I got a spinal tap, which confirmed my diagnosis, that's exactly what I thought was going to happen. Two days after my spinal tap, when I thought I was supposed to be recovering, I got so sick I couldn't get out of bed. I still had bad dizziness and the other symptoms, but I also started vomiting. I was weak, exhausted, and so so depressed. I had a supportive family, and health insurance – the means to get good care. Yet I felt like my future had just been stolen from me or obscured by an ominous dark cloud.

 

An MS diagnosis can be devastating – physically, financially, emotionally. It often strikes people who are young and healthy. It doesn't discriminate.  Its course is unpredictable and random. It's a bizarre disease and that still a leading cause of disability in young adults. Overcoming my symptoms and learning to live with the uncertainty that MS created has been one of the biggest challenges of my life.

 

Yet I was able to confront those challenges and go on to lead a pretty great life because of people like you. Just a few decades ago, there was no treatment for MS. The prevailing sentiment among neurologists was "Diagnose and Adios" – make the diagnosis of MS and then say good-bye because nothing more could be done.  In the last 20 years or so, the advances in treatment for MS have been astounding. Now we have more than a dozen medicines that reduce the progression of MS.

 

The National MS Society has championed and helped fund that research. They also provide services and support for people with MS and advocate for public policies to improve access to care. They are able to do that – and I am able to stand here today – because of people like you. Your participation in the MS 150 is an incredibly important way to raise awareness and funds for MS.

 

We still have a long way to go. An estimated 2.3 million people live with MS worldwide – many of them suffer terrible disability, fatigue, and pain. But your participation in activities like the MS150 helps dramatically reduce the frequency that those of us with MS end up like my patient back in the mid-90s before treatments were available. It helps provide support for MS Warriors who don't have a strong support circle, who don't have health insurance. And it means that when I have another relapse, there will be another medicine for me to turn to.

 

I was able to ride the MS 150 for the first time in April as a proud member of Team Taco Deli. It was such an empowering experience – truly a highlight of my year. I loved the festive atmosphere, the people along the way who came out to cheer us on, the well-organized rest stops with the buckets of every snack you could think of. I was especially excited to be surrounded by a community of people who shared my love of the outdoors and were helping to support those of us with MS, helping to fund research that will one day lead us to a cure.

 

I never thought, when I was lying in bed after that spinal tap that I would ever be able to ride 168 miles from Houston to Austin. I also didn't think I would be able to continue my work as a family doctor. I didn't think I could raise my daughters – who are now 10 and 13 – with my husband and partner Don. All of them are here with me now, and I wouldn't be here today without them. I didn't think I would be able to write a memoir about my experience, called White Spots and Black Holes which are common findings on a brain MRI when someone has MS. But I've been able to do all that and more because of the support of people like you. Thank you for being here, and I hope to see you on the road again next April.

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Celebrate Autumn: Healthy Tips for a Fabulous Fall!

Barton Springs Pool, Austin, Texas

I just returned from Barton Springs Pool, the iconic spring-fed swimming pool, 1/6 of a mile from end-to-end, just across the lake from downtown Austin. We had a short break in the rain and decided to visit that magical spot for a short swim and meet-up with visiting friends. Summer is still going strong here in Texas, and the only signs that fall are coming are the pumpkins starting to pop up at local grocery stores.

But other parts of the country are experiencing the first signs of autumn, and soon it will be here too. I can't wait!

 

Here are some tips to make the most of this beautiful season:

 

1)     Catch up on your health screenings: Checking in with your primary care doctor may not be your top priority, and it's easy to put off, especially if you're healthy or if you already see a specialist regularly for a chronic condition. But staying up-to-date with screening tests for cancer and chronic diseases, like diabetes and hypertension, is very important and may even save your life. Fall is a great time to see your doctor, who is probably back from summer vacation and open for business. For all women, testing for cervical cancer (age 21 and up) and breast cancer (usually starting around age 45 or 50) is strongly recommended. Women with risk factors, some men, and all women by age 65 should be screened for osteoporosis. All adults also should be screened for colon cancer (usually beginning at age 50), HIV, high cholesterol, diabetes, and other conditions, depending on your age and risk factors.

 

2)     Get immunized: Immunizations are not just for kids; they are important for adults of all ages. A flu shot is recommended for everyone, every year, and the vaccines are available nowl. Flu shots do not cause the flu, and there are few contraindications. Tetanus shots are given every 10 years (One of those should be a TDaP). The new Shingrix vaccine is recommended at age 50 to prevent shingles (even for those who received the previous shingles vaccine called Zostavax). Two pneumonia vaccines, PPSV23 and PCV13, are recommended at age 65 (generally separated by a year) but may be given sooner depending on other health conditions and risk factors. 

 

3)     Take precautions to stay healthy: Respiratory viruses are common in the fall and winter. Do what you can to avoid getting sick. Vitamin C and echinacea don't work. I wish they did, but studies do not show that they are any better than placebo. But eating a health diet, getting enough sleep, and especially washing your hands regularly will help keep you from picking up an infection.

 

4)     Enjoy cooking again: In the summer, I'm not excited to spend time at the stove or to turn on the oven when it's already 100 degrees outside. But in the fall and winter, cooking can be pleasant and comforting. I love finding healthy, vegetable-packed soup recipes, roasting veggies, or making a big pot of risotto.

 

5)     Plan early for the holidays. I feel like the holidays sneak up on me every year and are a huge source of stress. Planning ahead can help. Book plane tickets now if you're plan to fly somewhere over the holidays. Consider shopping early to avoid a big rush at the end (and talk to friends and family about cutting back or giving nonmaterial gifts). Be careful to avoid overscheduling or raising expectations too high.

 

6)     Exercise! Developing a daily (or almost daily) exercise routine can do more to improve health than any medication. With cooler weather coming, sometimes that routine may need a little adjustment. In cooler climates, you may need to move your exercise indoors (or in Texas, I can move back outdoors!). Most authorities recommend at least 30 minutes of moderate-intensity exercise most days of the week. I like to exercise first thing in the morning before another activity gets in the way. It's a great way to start the day, leaving me with more energy and a sense of accomplishment. Make exercise fun with a good workout mix, fun group class, an audiobook, or exercising with a friend.

 

For more suggestions, I found a great article from Reader's Digest.

 

What are some of your favorite fall activities or suggestions for staying healthy?

 

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Got a Chronic Disease? Get Over It!

I was back in the infusion suite this week for my ocrelizumab - my MS medication. Having a chronic disease is frustrating and infuriating, but I don't let it define me.

"How did this happen?"

"Why me?"

"It can't be! Why? Why? WHY???"

 

I know from personal experience (unfortunately) that getting diagnosed with a life-altering or chronic disease is often a miserable, depressing, terrifying experience. It's natural and OK to be angry, to be furious, at fate, at whatever randomness in the universe led to the diagnosis. Cry and scream and sulk and refuse to get out of bed. Go through the "Five Stages of Grief".

 

And then, finally, after days or weeks or months (don't let it go on longer than a few months), you have to GET OVER IT! You have to get out of bed and start moving forward. Yes, the disease has left you with a heavier burden. You probably have to take medicine and go to the doctor more often. You have symptoms and side effects. You have all sorts of limitations you don't want, didn't expect, and don't deserve.

 

When I was first diagnosed with MS, and for many months afterwards, I felt like MS was a big dark cloud hanging over me. I couldn't plan my future, since the cloud obscured everything. Before MS, I had had plan: I wanted to continue my work as a physician. I wanted to raise my daughters. I wanted to travel. MS was DEFINITELY not part of the plan.

 

But gradually I realized that I needed to suck it up, stop the pity party, and figure out how to live with this thing. Here are some of the steps I took and recommend to others:

 

1)      Find a really good doctor and care team. Find someone with experience caring for people with your diagnosis. You want a doctor who will listen, respect your opinion, and who is supported by a caring staff. Ask for recommendations from friends and family. Read on-line reviews. Try out more than one doctor if you can't find a good fit the first time.

 

2)      Focus on your abilities, not your limitations. Everyone has limitations, even Olympic athletes and Iron-man triathletes. Be resourceful and flexible. If you can't walk, swim or bike or find a creative physical therapist. Find and honor your strengths, and maybe you will even uncover new skills. 

 

3)      Define and grow your support circle. See my earlier blog posts about support circles. Reach out to others who share your diagnosis and learn from them, and tell friends and family how to be there for you.

 

4)      Figure out what you need to lead your best life. You might need more sleep or shorter work hours. I know I MUST exercise every day. Some people with MS even move outside of Texas to be in cooler climates that don't trigger their MS symptoms so much. Defining your needs may require some exploration; get to know yourself better, and make self-care a top priority.

 

I once had a patient with type 1 diabetes – the kind that usually develops in childhood, requires life-long insulin, and can cause a long list of unpleasant complications including blindness and kidney failure. When I commented that growing up with diabetes must have been difficult, he surprised me.

 

"Actually, it's helped me take better care of myself," he said.

 

I've thought of his words many times over the years, and I have tried to apply his wisdom to my own life. I've tried to use MS as an opportunity to get stronger, eat better, exercise daily (modifying my routine as needed to accommodate my limitations).

 

I have an attitude-relapse sometimes. I have those moments when the fury and resentment return.  But I can't live in that space. I tell myself to get over it! Then I regroup and remind myself to let chronic disease be a launch pad for better self-care, for setting priorities and looking ahead – not with fear but with hope.  

 

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A Golden Anniversary Surprise: We flew across the country to show up at my in-laws' doorstep

Moments after we arrived at my in-laws' home in Pennsylvania, we gathered to unwrap more surprises.

"Go!!!"

 

My two daughters, Ella and Clara, jumped out of the car and raced over the grass to the door of their grandparents' house. Mylar balloons bobbed behind them as they ran. Don and I followed close behind, rushing to catch up. After months of planning, we had arrived at my in-laws house on the morning of their 50th wedding anniversary. We had pulled the kids out of school and flown across the country from Texas to Pennsylvania.

 

It was a secret. They were not expecting us. They had planned a quiet day at home and were wondering why we hadn't at least sent a card.

 

My husband Don is an only child. He is also a bit of a prodigy: a star high school athlete, valedictorian of his class, the first in his family to go to college, (and not just any college; Don graduated from MIT), and the first to go to medical school. His parents are crazy-proud of him, and yet they only see him a couple times a year given the distance, and lack of direct airline flights, between Austin and Scranton.

 

The only people who come close to capturing as much love and affection from Don's parents are Ella and Clara, the only grandchildren. Don's parents were instantly smitten from the moment they met their granddaughters, during visits to Austin when each child was a few weeks old. Ella and Clara are equally devoted; Clara was in tears after her last visit with them, longing to be together more often. They write letters and sometimes spend hours on Skype when they can't visit in person.

 

Before we showed up at their door Friday morning, we were worried that someone would reveal our secret, ruining the surprise. Don's extended family and his mother's lifelong best friend knew about our visit because we had invited Don's aunts and uncles to a party – another surprise – the next night. Two of Don's aunts had helped as consultants and party planners. Someone was bound to let it slip.

 

We were worried, too, that our plan could fall apart. Would Don's father be feeling well, having just returned from a prolonged hospitalization a few weeks ago? His health had been tenuous for months after a stroke and surgery. Would they even be home when we arrived, or would they be grocery shopping or at a doctor's appointment? Would they be in the mood for visitors – noisy, last-minute, messy visitors who would barge into the house uninvited?

 

But when she saw the kids at her door, with her son standing behind them, holding colorful flowers, Don's mom was flabbergasted – and beyond delighted. "Oh my God! Oh my God!" was all she could say. No doubt. Our secret had remained intact. She called to Don's dad who joined us for tearful, excited hugs at the door. We were laughing and crying and stepping on each other's feet and hugging some more. "You're here!" It seemed impossible.

 

We barely stopped smiling all day. We shared the other surprises: a set of DVDs that Don had compiled from hundreds of videos on our phones, little treats Clara had wrapped in a cheerful yellow bag, plans for dinner that night and a family banquet the next night. Then Don helped his mom buy and install a new TV, replacing the ancient one – an "antique," I said – that they had in their bedroom. Don's father was almost as excited about the TV as he was about our visit.

 

Our dinner that night – at a lovely Italian restaurant in nearby Dunmore – was just the right ending to the day. And the extended family celebration on Saturday was the ideal way to honor 50 years of marriage and partnership. Don's aunts and uncles and a few close cousins and friends helped create a magical evening.    

 

I am grateful that I could share in such a joyful surprise.  My in-laws kept thanking me all weekend for making the effort to pull together the trip and the activities, but they didn't realize how thankful I was to them, for giving Don, our kids, and me such an opportunity. And now I have a new, rare addition to my treasured All-Time Favorite Memories.

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The Parallel Universe: What would life be like with MS and no insurance or help?

In my parallel universe - without resources, connections, insurance - I don't think I would have been able to climb so many mountains.

Sometimes I imagine myself in a parallel universe, as someone with MS who lacked resources and insurance at the onset of symptoms. What would my life look like? Would I be able to walk, to work, to drive? Would I be drowning in debt, choosing between paying rent or paying for my medication? Would I even have a diagnosis or be dismissed by doctors and labeled with "anxiety," "depression," "nonspecific dizziness," "nonspecific numbness," "neurologic symptoms of unknown etiology," "hypochondriasis?"

 

In my years as a physician in community clinic settings, I saw hundreds of uninsured patients with challenging health conditions. Together we struggled to navigate the complex web of services available, but we often came up short.

 

When I developed symptoms of MS almost nine years ago, I had vague, nonspecific complaints. Dizziness was the most notable one, but I couldn't describe it well. I was fortunate to see a neurologist and then an ear, nose, throat doctor – both personal friends - within a week. I got an MRI and had my diagnosis in nine days.

 

But what if I hadn't been a doctor, well-connected and insured?

 

I have no way of knowing for sure, but I suspect my diagnosis would have been missed, possibly for a long, long time. Many people go months or years with symptoms of MS and no diagnosis. Without insurance and ready access to care, I imagine I would have ignored my symptoms for as long as possible.  Like many of my patients have done over the years, I would have waited until I was desperate, panicked, or incapacitated before seeking care.

 

When I did finally decide to see a doctor, I may have ended up in an emergency room, waiting hours to be seen, shuffled through an unfriendly system, and still left me without a diagnosis, but with a hefty ER bill.

 

I could have ended up disabled from MS, unable to pay the ER bill, unable to work. Eventually someone would have ordered an MRI – maybe during an expensive hospital admission for an MS complication – and the diagnosis would have revealed itself. But then, would I have been able to afford the medications needed? Would I have progressed from relapsing, remitting to secondary progressive MS (which is often more severe and much harder to treat)?

 

I feel certain that my brain MRI would have a lot more white spots and black holes – those tell-tale signs of damage from MS – if I had not received timely medical care.

 

I frequently share my story, especially my presenting symptoms and diagnosis, with other doctors and nurses, hoping that the possibility of MS will come to mind when they see a young or middle-aged patient with unexplained neurologic symptoms. I encourage EVERYONE, no matter how healthy, to get health insurance – and keep it, no matter what. I also urge those who are struggling with mysterious health problems to find a good doctor who is persistent and curious, who will hunt down answers and resources.

 

I give thanks for having the good fortune to receive high-quality care for my MS and to lead a healthy, productive, and fulfilling life. But more than anything, I long for the day when every single person receives the health care they need and deserve. 

 

I encourage others to share their stories below, especially challenges accessing the health care system or reaching a diagnosis of MS or another condition.

 
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Thank God My Vacation is Over!

Mount Denali - tallest peak in North America - in Denali National Park, Alaska

I'm honored that my post, Thank God My Vacation is Over, has been published in BookTrib. Please take a look at the following link: https://booktrib.com/2018/09/returning-home-ms-blog/  What are your thoughts about travel  versus being home? 

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How to jump-start a new healthy habit

I did not have the ideal workout space during my recent trip to Costa Rica, but I have promised myself to exercise every morning, no matter what. I'm proud that I made it happen.

I'm honored that this article has been published on BookTrib. Please see this linke to read the article. https://booktrib.com/2018/10/how-to-jump-start-a-new-healthy-habit/  I'd welcome any comments below. What are your suggestions on the best ways to start a new health habit?

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Banning the Word "Perfect"

I'm honored that my post, Banning the Word "Perfect," has been published in BookTrib. Please take a look at the following link: https://booktrib.com/2018/09/perfect-lisa-doggett/

I'd welcome your comments below. 

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Beat the Heat: Tips to Keep Cool This Summer

Enjoying my favorite beach last week in La Jolla, California

I've just returned to Texas after a wonderful week at the beach in relatively cool La Jolla, California. Austin, Texas is sweltering, as it usually is in July. But as a 7th-generation Texan and native Austinite, I've learned a thing or two about beating the heat! Here are some of my family's strategies:

 

1. Explore your city/town's public pools – my kids have their favorites, and we try to go in the morning or the evening, since mid-day is often too hot and sunny even at the pool!

 

2. Exercise in the morning before it gets too hot (and before you get distracted with work and everything else). Find a place to swim laps if you can – wonderful exercise and you don't have to sweat!

 

3. Stay well hydrated. Carry a water bottle (a hydroflask works well to keep water cold even in Texas!). Also, get creative: make herbal iced tea, flavor water with different kinds of fruit, make smoothies with frozen fruits, or create spritzers with sparkling water and a little juice or lime. Here are some fun ideas to inspire you:

https://www.southernliving.com/food/entertaining/non-alcoholic-drinks#lime-fizz-soda-recipe

 

4. Wear airy, light-colored clothes. But be sure to bring a sweater for over-air-conditioned buildings. (And don't forget the sun-screen!)

 

5. Find fun in-door activities when you have free time: an afternoon outing to a movie, a local museum, the library, or the bowling alley can be a lot of fun when it's too hot to go outside.

 

Add more tips below! 

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Daily Journal Writing: 33 Years and Counting

My first journal, started in 1985, and my current one

I'm honored that this post has been published in BookTrib. Please leave comments below, and read the post here: https://booktrib.com/2018/10/daily-journal-writing-33-years-and-counting/

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Meditation: The Opposite of the Rest of My Life

From the Brooklyn Botanic Garden, June 2018

I was honored that the original blog post was published here: https://booktrib.com/2018/11/meditation-the-opposite-of-the-rest-of-my-life/ 

 

Please share your questions or experience with meditation or mindful practices in the comments below.

 

 

 
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Admitting Defeat, and Moving On

Biking over the Brooklyn Bridge with Don

I am finally admitting defeat. My foot pain, stemming from self-diagnosed plantar fasciitis, is not going to just "go away" on its own. I've been mostly ignoring it for over seven months. I ran all winter and spring, dutifully taking Naprosyn after my runs and stretching briefly but otherwise brushing it aside. I ran a half-marathon in January and kept up with eight-to-ten-mile long runs on weekends. Now I have to stop.

 

I usually try to practice what I preach as a physician. I embrace a healthy lifestyle, including daily exercise. I'm an ideal MS patient too. I take my medication regularly, and I never miss a test, a doctor's visit, or an infusion.

 

But cutting back my mileage on runs to appease my sore foot has felt wimpy, even as I limped around the rest of the day.

 

Now I've resolved to change. I am officially taking a break from running and getting serious about healing this injury. I'm going to be a good patient.

 

The timing is not quite coincidental. With Austin's high humidity and LOW temperatures in the mid- to-upper 70s, summer runs are usually pretty miserable. Still, the lake beckons, my dog gets antsy, and we have to hit the trail. Just not this summer.

 

I have to be adaptable – not my strongest skill. In doing so, I will search for the unexpected benefits, the silver lining.

 

I found one already during our recent trip to New York City. After a long stroll on the first day, through Central Park and the Upper East Side, I realized that my foot would not permit another day of endless walking. I was disappointed: unrestricted wandering is my preferred activity on most vacations.

 

But our Plan B was even better. Don and I discovered CitiBikeNYC. For $13 each, we bought day passes for unlimited 30-minute bike rentals from any of the hundreds of CitiBike docking stations scattered around the city. We biked through lower Manhattan, over the Brooklyn Bridge (where the bike lanes were much less crowded than the walking lanes), and made our way to Brooklyn Heights, a part of New York City we had never visited. Throughout the day, we alternated biking and walking, logging roughly 12 miles on the bike and much less on foot. We saw far more than we would have without the bikes, and though my feet were still aching at the end of the day, I know the bikes reduced my discomfort.

 

These last few days, my feet got a real break with my return to work. I am creating a physical therapy plan for myself, and I have revised my daily exercise plan to avoid running or walking. Now I go to spin class, do a 21-minute circuit work-out,  hop on the trusty Stairmaster, or swim at Deep Eddy Pool.

 

I had dinner last night with Jess – my most consistent and much-loved running partner – and her family. It didn't quite replace our therapeutic talks on long runs together, but it was wonderful nonetheless (with the distinct advantage of Jess's terrific cooking and cherry pie for dessert).  I just wish I had a treadmill for the dog…

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The "Best Available Vacation"

With Marcia at our alma mater, Amherst College

I was sorry to return home yesterday from our first summer vacation. The Austin weather forecast, predicting 95+ degree temperatures every day for the foreseeable future, is contributing to my regret, but I'm also sad to say goodbye to Don's family and to friends who live too far away. I've decided over the years that an important sign of a good vacation is that I don't want to go home. By those standards, we had a pretty great trip.

 

On the way to the airport for our flight home, we stopped at a café for an early lunch. I challenged Don and the kids, "Name your three favorite things about our trip."

 

To my delight, no one wanted to be limited to three. Ella suggested we think of our favorite activity from every day, which still proved difficult.

 

But despite the fun touristy activities – the Boston Duck Tour, the New England Aquarium, the Yankee Candle Company shop near Amherst, a day on roller coasters at Hershey Park in Pennsylvania (where Don took the kids without me) – the resounding highlights of the trip were the opportunities to reconnect with friends and spend time with Don's family.  

 

Early in the trip, we shared a wonderful evening with three of Don's best friends from MIT. Our kids played with theirs. We ate delicious homemade pizza and salad with greens picked out of the garden. The next night was equally terrific with some of my best friends from college. I'd seen them maybe once in the last 15 years. But we shared great memories and still have common interests and values.

 

After our time in Boston, my very dear friend, Marcia (also from college), joined us for a weekend in Amherst, biking, catching up, and showing off our beautiful Amherst College to my kids. And a few days later, we thoroughly enjoyed our dinner with friends Armando and Jack in Greenwich Village.

 

Of course, spending time last week with Don's mom and his dad, who is thankfully healthy again, left us feeling grateful and loved.

 

Our time with others enhanced our time together as a family.

 

I read a New York Times article about half-way through the trip that resonated with me. It was about the Fear of Better Options. I live with this fear, which may be even more acute because of my MS diagnosis. How long will I be mobile? How long will I have the energy to travel? I want to make THE MOST of the time I have, given the uncertainty of my future.

 

But I also realize that sometimes my insistence on finding the Best Available Option gets in the way of enjoying many other Very Good Options.

 

We did not have the perfect hotel every night. We didn't make it to a hear jazz in New York City or for a family hike in the Amherst Bird Sanctuary. We had some arguments and whiny kids and rainy days. But by meeting up with family and so many friends, and settling for some Very Good Options, we were able to enjoy the Best Available Vacation.

 

Please share your thoughts on how to avoid getting caught up in the Fear of Better Options and how to have a great vacation by leaving a comment below.  

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Stay Healthy During Summer Travel

Flying to Boston with Don (and the kids) for our first summer trip

My 10-year-old was shouting that her red backpack was missing. My husband was carrying luggage out to the driveway, checking his watch every minute and calculating our dwindling time left before departure. My 13-year-old was ready to go but refusing to help anyone else get ready to go. I was trying to decide what to do with the strawberries in our refrigerator that would spoil in our absence. The dog needed to be fed. The thermostat needed to be adjusted.  I had to get my sunglasses out of my car and water the plants on the front porch. Why, oh why, do we take vacations again?

 

A few days ago, we left for our first family vacation this summer. And I was reminded once again why travel – especially family travel with kids – is so stressful.

 

The pre-vacation period for me is especially hard. I have a recurring dream about packing – always at the last minute – and rushing to the airport, knowing I'll miss my plane. I dread packing, and I'm always sure I'm forgetting something crucial. Finishing home and work projects and arranging pet and plant care is also time-intensive and difficult. And just getting to the airport without a meltdown by at least one of us – well, that may be too much to ask.

 

Once we get to our chosen vacation spot, the stress may continue. Navigating new cities and towns, staying in hotels, dealing with different time zones and airports all take a toll on our physical and mental health.  While I won't pretend to have great advice on achieving family harmony during a vacation, I would like to offer tips on staying healthy while traveling, which is a big priority for me.

 

1) Get enough sleep: I aim for at least seven hours. Sleep is critical to allow our minds and bodies to rejuvenate after a stressful day. I use ear plugs to reduce the chance that a noisy neighbor will wake me up. And I try to go to bed and get up at roughly the same time every day (though that's not always possible).

 

2) Exercise every day: Exercising on vacation takes time and discipline, but it helps me sleep better and deal with stress.  I keep a pair of running shoes in my suitcase, and I get up 30-40 minutes early to run, usually every other day.  I might explore the place we are visiting or hop on the hotel treadmill. I try to choose hotels with workout facilities or trails nearby. (After getting lost a few times, I've learned to bring a small carrying case for my phone. With Google Maps, I can find my way back!) If I don't run, I use a workout app on my phone, and I do a short workout in the hotel room, usually a combination of strength training and core body exercises. (My kids love taunting me during the workout, so there is something fun about it for everyone!)

 

3) Stay up-to-date with immunizations:  Tetanus shots every ten years and an annual flu vaccine are recommended for everyone. Flu shots do not cause the flu, and only rarely are they contraindicated. Other adult vaccines that may be indicated, depending on age and other risk factors, include Pneumococcal vaccines (PPSV23 and/or PCV13) and the new shingles vaccine (Shingrix). When traveling to exotic destinations, like many parts of Africa and Asia, additional vaccines and malaria prophylaxis may be needed. The CDC website is a great source of information for foreign travel: https://wwwnc.cdc.gov/travel/destinations/list

 

4) Wash hands often: I carry hand sanitizer, and I'm vigilant about using it. Hand-washing may be the single most important way to prevent the spread of infections. Unfortunately, though some people swear by products like echinacea and vitamin C, the evidence that they prevent infection is poor.

 

5) Eat a healthy diet: Traveling often throws off routines, including dietary habits. But I make a point to try to maintain a healthy diet even when I'm away from home. In particular, I try to eat fruits or veggies with every meal, avoid fried foods and saturated fat, avoid drinks with calories (including juice), and don't go crazy with the dessert. I also limit alcohol to one drink, at most.

 

6) When traveling outside of the U.S. and Europe, be mindful of food-borne illness. In many parts of the world, it's a good idea to stick with bottled water, avoid drinks with ice, and avoid uncooked or unpeeled produce.  Pick up a travel book from the library or do a little on-line research ahead of time to identify any recommended food restrictions for your destination.

 

7) See a doctor regularly: Preventive care is important for everyone, and even active people aren't immune to common infections and chronic disease. While I don't believe a yearly head-to-toe physical exam is necessary for everyone, regular visits with a trusted primary care physician (usually every one to two years, depending on age, health status, and risk factors) are recommended and are especially important to ensure good health when traveling.

 

8) Give yourself a day of post-vacation recovery: If possible, I like to return home with at least a day to catch up after being away for vacation. Having a day to do laundry, go grocery shopping, sort through the mail, and prepare for the week ahead, is great for my mental health and make the re-entry process back to reality a lot smoother.

 

Here's to a healthy summer! Please add more tips in the comments below.

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Musings on Uncertainty

Planting my plot in the community garden every spring and fall is an optimistic gesture in the face of uncertainty.

Uncertainty is one of life's inevitabilities. And we all cope with it and accept it – more or less. But a chronic disease like MS can raise that level of uncertainty to a new level - to scary, unfamiliar territory. MS is especially unpredictable with a wide range of symptoms and rates of progression. My diagnosis left me reeling. I didn't know how to get on with my life with the added uncertainty of MS.

 

Soon after my diagnosis, I had a dream that I suddenly couldn't move – at all.  When I tried to open my eyes, I couldn't see. When I tried to call for help, I couldn't speak. I woke up more terrified than relieved, realizing that the shadow of MS, a disease that could take away most of my ability to function, would never leave me. I could wake up paralyzed. The dream was far-fetched, but elements of it were true possibilities.

 

When first diagnosed, I felt great despair because I was pessimistic. Instead of uncertainty, I felt certain of a dismal future. I thought I had to abandon my dreams because I couldn't take on a new challenge. I couldn't switch jobs, or travel, or push myself to new limits.

 

Yet, over the years, I have proved myself wrong. I have had new MS symptoms and relapses, but I've recovered each time. I've traveled to five continents, run two marathons, and accepted leadership positions with new responsibilities.  And I've formed a tense alliance with uncertainty. Some MS-related decline is likely, but it's not certain. If it happens, I'll still probably be OK. Because when there is uncertainty, there is hope.  

 

In addition to a shift in attitude from despair to hope, here are some strategies for dealing with uncertainty:

1)      Cultivate healthy habits that you can do every day to give you structure and some sense of control. For me, exercise and meditation are key ingredients for a good day.

2)      Read fun "escape" books when you need a short break from reality. You can follow me on GoodReads suggestions: https://www.goodreads.com

3)      A sense of humor is essential.  Dave Bexfield's uplifting and inspiring website and blog epitomize how to do this well: http://www.activemsers.org. Despite significant disabilities from his MS, Dave continues to travel the world via wheelchair and stays active as a cyclist and adventurer. He finds humor in every inconvenience he experiences as a wheelchair-user and MS warrior, and then he shares his funny tales of woe with his readers.  

4)      Keep a journal. I write every day. Sometimes I look back at past entries, and it's encouraging to see some of the challenges I have overcome.

5)      Talk about it. Uncertainty is stressful and frustrating. Share your feelings with a trusted friend or family member or a counselor. It's OK to feel rage and sadness and grief. Sometimes you just need to vent.

6)      Plant a garden. I joined a community garden a few years ago. Planting my spring or fall garden is always an optimistic gesture, equal parts uncertainty and anticipation.  I don't know what the conditions will be like to support the garden. In my first winter garden, the Brussel sprouts were a flop, but the kale was wonderfully out-of-control. I don't even know for sure that I'll be physically capable of harvesting my vegetables when they are ready each season, but I counterbalance that uncertainty with hope.

 

Please share your ideas for coping with uncertainty in the comments below. I'd love to hear from you.

 

 

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Overcoming Ambien - and learning to sleep again

Sunset on Day 1 of the MS150

I used to be addicted to Ambien. I couldn't sleep without it. I tried everything – all the recommendations I gave my patients to improve "sleep hygiene." I exercised every day. I went to bed at the same time every night. Nothing helped.

 

I've never had an easy time sleeping, but in the first few years after my 2009 MS diagnosis, I wondered if I would ever sleep normally again. I felt dizzy – my main MS symptom – all day, and I wanted so much to have a restful sleep at night, but I could not. I felt like Sleep was a beautiful room, beckoning to me, but an impenetrable door blocked my passage. My husband, next to me, would float right in, but I was left pounding at the door: "Please! Open up!"

 

Ambien was the only thing that seemed to work. I tried other medicines: Benadryl, melatonin, Chinese herbs. I went for acupuncture and restorative yoga classes. But every night that I tried to sleep without Ambien led to the same late-night internal conversation: Why can't I sleep?! Should I get up and take Ambien? No, I need to learn to sleep without it. What is wrong with me? Why am I addicted to this medicine? I'll have a horrible day tomorrow if I don't sleep. Maybe just half a pill. Tomorrow night I can try again.

 

Up to 10% of U.S. adults suffer from insomnia and report significant functional distress. Sleep problems in chronic disease are especially tricky to manage. A disease like MS can, itself, cause insomnia, and sometimes medications used to treat the disease can interfere with sleep. Anxiety and worry about the disease compound the problem. Medicines like Ambien have a role in the treatment of insomnia, but they have their own side effects and potential problems.

 

At some point, I realized Ambien was making my daytime dizziness worse, and I finally quit taking it. Generally, I'd rather be tired than dizzy. And gradually, my sleep improved without it.

 

Although sleep hygiene measures have fallen out of favor to some extent, I think they did help me:

 

- Go to bed and wake up at the same time, seven days a week.

- Avoid caffeine within eight hours of trying to sleep. (I quit caffeine almost completely when I realized it, too, seemed to worsen my dizziness).

- Exercise every day, but usually not within two hours of sleep.

- Use your bed for sleep (and sex, if you are in a relationship) only – avoid TV, video games, working on your phone or computer, eating, etc. while in bed.

Avoid using alcohol to fall asleep.

If you can't fall asleep after 15-20 minutes in bed, get out of bed and go to a different room where you should do a quiet activity until you start to feel tired; then try again. This last tip is the hardest, but it's the most critical! 

 

More importantly for me was my discovery of mindfulness meditation about three and a half years ago. I completed an eight-week mindfulness-based stress reduction meditation class, led by Geeta Cowlagi here in Austin. I didn't expect meditation to have a dramatic impact on sleep, but it has almost cured my insomnia. It's also given me a tool to deal with sleep issues and anxiety when they occur.  I now do a short meditation every night just before falling asleep. It's pretty great, because I usually DO fall asleep.

 

Cognitive behavioral therapy is another excellent option for treating insomnia – and it seems to have a better evidence base of success than sleep hygiene recommendations. Best of all, it's noninvasive and nonaddictive.

 

I don't believe in a one-size-fits-all approach to insomnia cures, but I do think getting restful and adequate sleep is important for all of us. Please add your tips and recommendations below in the Comments section. I hope this is helpful!

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Self Care: Part 2

This Mother's Day, I got back on my bike for the first time since the MS150 for a morning ride my mom and daughter.

A trip with my 10-year-old, Clara, to Laguna Gloria Art Museum to make robots for Family Day; a stop by the community garden to pick carrots; dinner at a favorite neighborhood restaurant; a good movie with Don; and a morning Mother's Day bike right with my 13-year-old, Ella, and my mom have resulted in a pretty ideal weekend. Busy, but not overly so. Productive, but fun. Quality time with many of my favorite people. Now I'm ready for my afternoon Texas Physicians for Social Responsibility board meeting and a low-key family dinner. 

 

This all ties into self-care, and below is Part 2 of my blog about my recommendations and personal self-care strategy. These questions came from a reporter who was writing an article for the New York Times. She did not end up using my answers, but I wanted to share them anyway, in case they are helpful.

 

What dietary behaviors do you believe protect your health – do you practice what you preach to your patients?

I feel strongly that I can't advocate for good health habits effectively if I don't follow them myself. I am a long-time vegetarian except I occasionally eat fish. I also am one of few Americans who actually eat more than five servings a day of fruits and veggies. Having MS has made me even more careful with my diet. I also try to set a good example for my kids, though it's led to few heated discussions about why I won't buy them Doritos.

What do you advise patients to do?

I tell patients that there is no magic to a healthy diet or to weight loss, which is often the goal. To lose weight, cut calories and exercise. For everyone, I suggest avoiding sugar-sweetened beverages, making sure that each meal contains at least one serving of fruits and/or vegetables (aiming for at least five servings a day – and even more is better), and avoiding fried and highly-processed foods. Keeping salt intake to a minimum (less than two teaspoons) is another good rule of thumb. Limiting alcohol, too, is important.

Do you take vitamins or supplements?

I don't take vitamins or supplements, except for calcium (for bone health) and vitamin D (only because I have MS). Evidence supporting most vitamins and supplements is pretty poor for those with a well-balanced diet. 

What about exercise?

I'm obsessed with exercise. I started exercising nearly every day over twenty years ago as a medical student. Exercise in my stress-reliever, my antidepressant, and helps prevent anxiety. I run or do another aerobic activity every morning just after I get up. I think exercise if the most important thing I do for my health – by far.

What are your thoughts about elective medical procedures - eg.back surgery, knee/hip/shoulder replacements?
I really try to practice evidence-based medicine. Some procedures – such as knee surgery for meniscal tears – have not been shown to be better than nonsurgical care. I do not advocate these procedures that only add to soaring health care costs and subject patients to unnecessary risks.


Tell me your thoughts about incidentalomas?

Incidentalomas are extremely common and are one driver behind escalating health care costs. Patients – and even some health care providers – often think that more screening, more testing is better. The problem, of course, is that we find things we aren't expecting, that often will never become a problem, but also can't – with 100% certainty – be safely ignored. I experienced a scare years ago as a patient when my doctor thought she detected an ovarian mass on a bimanual pelvic exam (a type of exam that is no longer recommended by many authorities in those without symptoms). I ended up needing an uncomfortable pelvic ultrasound – to the tune of hundreds of dollars and significant personal anxiety – to prove that it was nothing.


Do you watch your weight?

Yes. I have been fortunate that I've always had a healthy weight, and I've never been on a diet (except for a couple weird ones that I tried to alleviate MS symptoms), but I still work to maintain my weight through healthy nutritional choices and daily exercise. I keep a scale in my closet and check my weight regularly.

What do you do in general to keep healthy?

I strive for a healthy diet, daily exercise, daily (short) meditation, and seven to eight hours of sleep each night – usually I can do this!

What do you think are the most important things people can do?

Exercise and a healthy diet are more important than any pills or tests that a doctor can offer. However, people can still get sick (I got MS!). Having a trusted physician who can help when symptoms develop and getting screening tests and immunizations as recommended are critical as well.  

What are your hopes for medical care in the future?

I hope that as a society we can take steps to better support healthy habits and to offer truly universal, affordable health care.

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Self Care Part 1

Part of my "self care" strategy for a recent business trip to Puerto Rico was taking an hour off to enjoy the ocean and amazing scenery.

Since my diagnosis with MS in 2009, I have often felt like I'm driving a car without a steering wheel. As a chronic disease, MS is, of course, incurable. Unfortunately, the course of MS - one's overall prognosis – also is not very impactable. Other than taking my medications, there is little I can do to stop or slow its progression.

 

Initially, when I found out that my future with MS was beyond my control, I felt disempowered. I had wanted to find proof that a particular diet – no matter how restrictive – would halt MS in its tracks. Or maybe acupuncture or ten hours of sleep every day would make a difference. But that proof doesn't exist. We still don't know what causes MS or will make it go away.

 

Over the years, I have regained a sense of control, however, by prioritizing self-care.  As a family doctor, I have always tried to practice what I preach. Now self-care is an obsession. It may not make a difference for my MS, but it certainly won't hurt. And I know it will help decrease my odds of other health problems.

 

I recently had an opportunity to answer some questions from a New York Times reporter (that she did not end up needing for her story) about my own self-care habits and recommendations for others. I thought I would share those answers in a two-part blog - Part 2 will come out next week.  You'll notice there are some common self-care beliefs that I dispute (Spoiler: I don't take multivitamins or supplements). I hope this is helpful! Please let me know what you think.

 

What do you look for in a physician to care for you and your family?

I look for a physician with medical curiosity. I want my physician – and the physician for those I care about – to be smart and thorough and really get to the bottom of any symptoms or concerns. Of course, a good bedside manner and a friendly, caring attitude are essential as well.

How often do you get medical check-ups?

I have to see my neurologist at least twice a year for my MS. Besides that, I'm somewhat lax about getting regular check-ups. I take good care of myself. I monitor my own blood pressure. I do get recommended vaccines (including an annual flu shot) and screening tests, but I also don't overdo it.

What are the benefits and possible disadvantages of seeing a primary care doctor annually?

Annual visits don't really have to be "annual" for everyone. If someone is young and healthy, visiting a doctor every two or even three years might be reasonable. But especially for older adults and those at risk for or who have a chronic disease, regular care is important. I do think everyone – young or old, healthy or not - should be established with a primary care provider, in the event that something unexpected comes up.

Do you get your cholesterol checked every year?

Annual testing is overkill. I'm 44, and I've had my cholesterol checked twice in my life because it was at a healthy level and unlikely to change much over time. Even most national guidelines don't recommend annual cholesterol checks unless someone is on cholesterol medication or has another condition that makes regular testing reasonable. Testing every five years (or even less often) is probably adequate when the initial screening test is normal in those without other cardiac risk factors.

What about tests for prostate cancer screening?

Not applicable for me, but I would not recommend prostate screening for my husband or father. Overdiagnosis and overtreatment are far too common.

Which screening tests do you undergo?

I comply with guidelines for cervical cancer screening (pap smears every three years, or every five years if combined with HPV testing). I have received mammograms, but with more recent guidelines, I have reduced the frequency of screening to every other year. And I had a colonoscopy at age 40 (earlier than usual) due to my family history. I have turned down screening tests offered by my physicians for ovarian cancer and carotid artery thickening (increasing the risk for stroke) because I knew that the evidence did not support such testing. 

Do you undergo screening for osteoporosis and vitamin D levels?

I have been tested for vitamin D deficiency because it is linked with MS, but I do not recommend it routinely for healthy people. Similarly, I knew that I was at higher risk for osteoporosis because of my family history and steroid requirement for MS in the past, so I agreed to a bone density test. I strongly support women getting screened for osteoporosis in their 60s, and sooner if they have risk factors, but I am frustrated by the amount of over-screening that occurs.

Which ones do you believe save lives?

Mammograms, pap smears, colonoscopies, and bone density tests all save lives. No question. Many other tests have less evidence of benefit. Overtesting is commonplace, but it results in significant harms. Check out the U.S. Preventive Services Task Force website for excellent, evidence-based recommendations for medical screening tests.

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MS150: Mission Accomplished

With my amazing riding companions - my cousin Bates and friend Cesar - on the "Challenge Route" of the MS150 Day #2 

I feel great today! I am sore and tired, but I accomplished my goal. I rode 168 miles from Houston to Austin on my bike this weekend. I raised over $5600 to fight MS. I bonded with my funny, caring, thoughtful cousin who I've barely seen in the last twenty years, and I made dozens of new friends. I shared my story on the CBS-Austin news: http://cbsaustin.com/news/local/traffic-delays-expected-as-2018-bp-ms-150-kicks-off  And I was proud to speak at the finish line. I've included my speech here. Please share your comments below:

 

What an exhilarating weekend! I am so proud and fortunate to have been a part of it. I didn't know if I'd ever make it through those Bastrop hills, but somehow I did and it is thrilling to be at the finish line. I want to thank the National MS Society, the Tacodeli team who took me in at the last minute, my friends who donated, my family who came out to support me and have been a critical part of my MS journey. Most of all i want to thank my cousin Bates and my new friend Cesar who drove all the way from El Paso to be my cheerleaders and companions on the awesome adventure we had this weekend.

 

I was diagnosed with MS 8 1/2 years ago, and I know that receiving such a diagnosis can be a scary and lonely experience. I didn't know if I'd be able to work or to parent my daughters. I certainly didn't think I'd be able to ride 168 miles from Houston to Austin on a bike! But after riding the MS 150 for the first time, I know I'm not alone and I'm not afraid any more to take on new challenges. Over ten thousand people came out with me this weekend to fight MS, to fund new research, to support people living with MS, many of whom were not able to be here riding with us. I am here, healthy enough to be able to finish this ride, because of my fellow riders and the many many riders who came out to fight MS over the years. I am so grateful to all of you.


Congratulations and thanks for making a difference in my life and the lives of so many others with MS.

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