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Thank God My Vacation is Over!

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

I'm homeward bound after spending much of the summer in transit. In the last two and a half months I have been to New England, Puerto Rico, Southern California, Costa Rica, and Alaska/Seattle. Now I'm done – at least for a while. I'm grateful for the opportunity to travel, to learn and explore. It's been an amazing summer, and, despite the headline, I'm not really delighted it's almost over. But I'm thrilled to be heading back to Texas at last, regardless of the heat, piles of mail, and endless tasks that await.

 

Here are the many advantages to being home:

1)      Consistency – Staying up until 2:00, sleeping all morning. Or falling asleep at 8:30 and getting up at 5:00. Traveling by foot, boat, bus, minivan, plane. It's all part of the adventure. Yet I am looking forward to the routine that I left behind when I started my adventurous summer.

 

2)      Familiarity – Red Alert: GoogleMaps is not always right. It has taken me to an empty field instead of an office building or hospital more than once. Yesterday, the map distinctly indicated that we should turn right while the voice, with great authority and assurance, said, "Turn left."  Even with good directions, I regularly get lost.  I am now looking forward to driving without a map. (I also know my way around the neighborhood grocery store and how to work the washing machine at home - Hallelujah!)

 

3)      Proximity – On day 2 of our Alaska trip, we ended up in the Emergency Room. My husband, Don, developed severe neck pain unresponsive to conventional treatment. He was fortunate to receive excellent care in the ER, but I always worry about what will happen if my MS flares up or another health crisis strikes while I'm away. At home, if I or anyone in my family needs medical care, we can get it.

 

4)      Alone time – I have rarely even slept in a room without my kids this summer. I've been lucky to take a shower without visits from multiple family members who are sharing the same bathroom.  Indigenous Alaskan families used to spend months together: dozens of people shared a single large room, accessible only by underground tunnel, in near-total darkness, all winter. I will just say my family would not thrive in that environment.

 

5)      Exercise options – "Next up, triceps dips!"  I pretty much hate my last-resort 21-minute workout routine (I do the 21 Minute Cardio Blast with a few modifications) that I have been doing more than anything else to stay fit this summer. It does the job, but oh, how I dread it! Often our hotels or home-stays have lacked fitness rooms, and a foot injury has kept me from running. I have done the 21-minute workout on dirty tile floors, scrunched in between two beds, and on the grass outside our Airbnb. Now I will have a gym, swimming pools, spin class, and my trusty Stairmaster. Anything but the 21-minute workout!  

 

6)      Miscellaneous: Temperature control (of house and water), regular Internet access, seeing friends/family/pets who did not come along on the trip, ability to wash and dry my clothes regularly, a kitchen where I can prepare my own food, my own bed...

 

Even if you didn't travel this summer, rejoice in being home! Please share your favorite things about being at home in the comments below.  

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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.

As a family physician for 16 years, I have spent a substantial part of my career counseling patients about how to live a healthier life - how to develop new habits and stick to them. And as a patient with a chronic illness, I've incorporated some healthy changes into my own life (like daily exercise and meditation) to do whatever I can to reduce the risk of disease progression. Acquiring new habits at any age can be difficult, but it can also be empowering and life-changing.

 

Here are some suggestions for how to develop new healthy habits and stick to them:

 

1) Clarify your reasons for making the change. You might even write them down and review them regularly. Make sure you have reasons that YOU believe are compelling. You are less likely to be successful if you are changing just to please someone else.

 

2) Build accountability: Tell someone you respect, whose opinion matters to you, and who will  support your change.

 

3) Make a plan, a reasonable plan: Don't say, I'm going to run the marathon this year if you can't run a mile yet. Don't say, I'm never going to eat dessert again if you love dessert. Think about your true capabilities and commit to something you really will be able to accomplish. Then break down your goal into small, manageable steps and get started.

 

4) Find a way to make the change fun. To make exercise better, make a great workout mix or listen to a podcast or audiobook. Exercise with a friend or join a class. When I started exercising regularly back in medical school, my exercise of choice was to spend 30 minutes on the Stairmaster. I don't really like the Stairmaster, but I made it bearable with a treat: a good book. Instead of the usual medical textbooks I used to study, I read novels. Sometimes I actually looked forward to the Stairmaster.  

 

5) Schedule the new activity into your day or week. I exercise every day. I know I will do it every morning, and then I don't have to make the decision every day about whether or not to exercise.

 

6) Keep your promises, especially to yourself: If you commit to eat more veggies, walk every evening, or join a spin class every Thursday, don't flake out! If you have a tendency to give up on yourself, maybe the first new habit to develop is to follow through on promises to yourself.

 

One of the most recent positive changes I made was about a year and a half ago: I initiated Family Meetings with my husband and kids. Like many families, we have very busy schedules and often struggle to keep everything straight. To contain the chaos of our lives, we started to meet every Sunday evening. I write an agenda ahead of time, and we talk about issues that are important to us and review the weekly schedule. The meeting time is on the calendar. Now it's a habit. Everyone expects it, and we have a treat afterwards - usually a fun TV series that we watch together. Here is a great article I found about family meetings: https://www.psychologytoday.com/us/blog/emotional-fitness/201209/10-tips-holding-family-meeting.

 

I'd love to hear more ideas about acquiring healthy habits. Please add some tips below.

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Banning the Word "Perfect"

"Perfect!"
That's it. I've said it again. And I'm wrong. There's no such thing.
 
I'm a recovering perfectionist.  

 

I have been striving for Perfect my whole life. In so much of what I do, I am chasing the unattainable. I seek to plan the ideal vacation, prepare the flawless meal, pull together the perfect outfit for a night out or work presentation. If it's not perfect, it's not good enough. By striving for Perfect, I am setting myself up for failure and disappointment.

 

So, this week, I decided to ban the word from my vocabulary.

 

It's been hard. I say "perfect" a lot when I really mean "fine" or "great." "That parking spot is perfect!" "The weather last week in California was perfect!" "Those peaches have ripened – now they're perfect!"

 

That word – perfect – is a succinct, optimistic way of describing an object or experience. It imparts value; it's a complement.

 

But, ultimately, it is inaccurate. It is imperfect, if you will.

 

The weather in California was amazing – sunny and cool, but not too cool. But the first day, it was too windy, and the last day it was too hot. La Jolla hasn't seen substantial rain since October, so the whole area is too dry. 

 

Hence the other reason for banning the word: part of striving for Perfect means spotting shortcomings.

 

I credit multiple sclerosis with nudging me to accept imperfection. MS pushed me off balance, off the charted path for my life. It helped me confront and accept my own limitations and deficiencies, but I still have work to do.

 

I'm particularly guilty of noticing and highlighting imperfections in my kids. My 10-year-old Clara's hair is usually tangled. She is a picky eater. She can make a delectable omelette, but she will leave the kitchen looking like it was raided by racoons. Ella (13) is impatient; she gets bored too easily. Her room is a mess (but not as bad as Clara's).

 

I am struggling to give up that laser focus on faults, that temptation to fix everything that falls short. I'm not there yet. I haven't even been able to stop saying the word, but then again, I'm not perfect either.

 

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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

January 1, 1985: "Went with Hannah to see her pony. Don't want to go back to school."

 

Those words launched my life-long habit of journal-writing at age 11. Since then, I have written every day, over 12,000 times. OK, so I have forgotten a few days, but just a few: five or six days in 33 years. (Hannah, by the way, is still a close friend!)

 

Writing in my journal is a natural, ingrained part of my day, like eating dinner or brushing my teeth. It helps me process the day's events and feel a sense of closure.  Here is a short Q & A I created about journaling. Please let me know what you think, and add any suggestions you have, in the comments below. Also check out this article, A Total Beginner's Guide to Keeping a Journal, if you need help getting started. 

 

1)     Why is journaling helpful?

Journaling helps us make sense of events in our lives and process difficult emotions and conflicts through creation of a personal narrative. It can feel like a release to write something down and then let go of it. At the same time – and almost paradoxically - daily journaling also helps preserve memories, giving the writer a written account of her life.

 

2)     What are some life benefits of keeping a journal?

I find journaling to be a stress reliever, allowing me to purge frustration. I also have gained a lot of personal insights, by tracking patterns in my life and my own response and behaviors. I think people who struggle with depression, anxiety, PTSD, insomnia, or chronic disease are particularly likely to benefit from regular journaling and may see a decrease in their symptoms and improvement in their mood and general well-being.

 

Soon after I was diagnosed with MS eight and a half years ago, I started to use my journal to track my symptoms and correlate them with my mood and sleep patterns. Journals can be very helpful for finding triggers for medical problems like migraines, abdominal pain, insomnia, and an array of other conditions. 

 

I also love having a written memory of my life. I can go back in time when I can't remember something and figure out what really happened. If I want to know how we celebrated a special occasion or where we went hiking on vacation fifteen years ago, I can find out. I also have used my journals to write my memoir about my MS diagnosis, and they were critical to the process. Time seems so fleeting and elusive to me, and journaling helps me capture a small piece of it.

 

3)     What are some recommended journaling techniques? 

Here are some tips from my personal experience:

 

- Write every day no matter what - or every week if daily journaling seems too intimidating. I usually write at the same time of day. (I prefer right before bed). If you're tired or pressed for time, just write a sentence (like I did at age 11), but get something down to help solidify the habit and remember a little about that day (or week).

 

- Choose a writing method that is easy and convenient. Some people find it easier to type on a device, for example. Others write on a calendar or daily planner. I prefer to write by hand, and I love choosing beautiful blank books and filling the pages.

 

- Think about your purpose in writing, and that can guide your process. For me, I like to remember what I do every day, so sometimes my journal entries are a list of activities with minimal commentary. But at other times, I'll use my journal to work through a challenging situation, sometimes with a stream-of-conscious approach. If I'm angry at someone, I might write them a letter in my journal – not to send it, but to help me get out what I want to say. If I experience something particularly joyful or exciting, I may take time to write more details so I can re-live the experience later.

 

- Keep it simple and don't beat yourself up if you forget a day – or even a week. Just figure out some ways to remember to write in the future and realize that you don't have to write a novel every day. Just a sentence or paragraph is great!

 

- Have realistic expectations. Journaling probably will not dramatically change your life, but if you are committed to doing it regularly and using it as a tool, you can learn a lot about yourself.

 

Thanks for reading – and I hope you'll also start writing!

 

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Meditation: The Opposite of the Rest of My Life

From the Brooklyn Botanic Garden, June 2018

I'm still a little embarrassed to say I meditate. It sounds weird, too alternative, uncool. My hesitation is probably left over from my years of resistance to meditation, to my prior judgement without really knowing what it was.

 

Like a lot of people, much of my life has been defined by accomplishments. We are programmed to see our lives as milestones on a timeline: graduations, completed projects, career advancements, children's birthdays.

 

Even my days are programmed, broken into tangible steps that I can check of my list. Here is today's list (a Saturday): Set up new work computer, go to the gym, finish travel planning for next week, make sure Clara gets packed for Girl Scout Camp, water the garden, pick up meds at the pharmacy, tackle email.

When someone says, "how was your day?" I often reflect back on the "accomplishments" of the day. "It was good," I might say. "I turned in the final report on the immunization project. I also managed to get Ella's dance class rescheduled and make granola."  Or, "It was totally frustrating. I didn't get a damn thing done!"

 

Meditation is the opposite of the rest of my life. It is not productive. It is not an accomplishment. It is not even a planning period for future productive endeavors. It just is.

 

I started to meditate around the time that I accepted the position as medical director at a clinic for immigrant families several years ago. I knew that my job would be a huge challenge and soon would swallow me whole. I needed a counter-balance to the chaos.

 

Meditation did that for me. It became a resting place, a centering, a grounding in the midst of tremendous busy-ness, stress, and overwhelm.

 

Knowing I needed instruction and guidance, I started by taking a class from Geeta Cowlagi (http://www.joyfulliving.us/) here in Austin. Geeta's eight-week class, Mindfulness Based Stress Reduction (MBSR), was eye-opening for me (though, naturally, I spent much of it with my eyes closed, meditating).

 

A big revelation was that I could meditate! Whenever I had tried before to sit and clear my mind, I couldn't do it; intrusive thoughts left me reprimanding myself for my lack of focus and discipline to meditate the "right way."

 

But Geeta taught me, with her infinite warmth and wisdom, to acknowledge those thoughts and just come back to the present moment. The moment when I realized my thoughts had pulled me away to worry about the clinic, or the kids, or my grocery list was actually a mindful moment and a chance to refocus and try again. There is no right way; there is no judgement.

 

I learned that meditation does not to have to be done sitting on a cushion in a lotus position with open palms resting on each knee. A mindfulness practice can be done anytime, anywhere. I can mediate while walking, stretching, running, cooking, brushing my teeth. I can shift inward and focus on my breath while standing in line or waiting in traffic. The result is more peace, calm, focus. It's subtle, but it's real.

 

I've tried out several meditation apps over the years, and my favorite is Insight Timer. It is free and offers a vast array of guided meditations of varying lengths.

 

But my daily meditation practice doesn't even require an app. I set the timer on my phone and focus on my breath. Just six minutes, every morning. It helps to set up my day and reduce my MS symptoms. At bedtime, I do a short body scan meditation. Again, it's just a few minutes, but I sleep so much better.

 

Would meditating more be better? Probably. Some meditation teachers advocate for at least 45 minutes day. Should I sit cross-legged with my back straight? Should I be able to focus for more than a few seconds without intrusive thoughts? Possibly. But as Geeta would remind me, there are no "should's" in meditation. I've made a short meditation practice part of each day, and I've noticed some positive benefits. For me, that is enough.   

 

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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