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The Most Wonderful Time of the Year?

Those two lumps are my kids who were both sick - with different illnesses - on the same day recently.

Does anyone else want to scream every time you hear that now, right now, is The Most Wonderful Time of the Year?

 

My response: Really? God, I hope not!

 

My younger daughter has been sick for 10 days, with fevers to almost 105 degrees. She missed seven and a half days of school, was seen in the ER, and then saw three different specialists this week.

 

Here are some memorable tidbits from the last week and a half (all are me speaking to my daughter):

 

-          "If you think you're going to throw up before I can pull over, throw up in your jacket, not all over the car."

 

-          (On the phone, after making a special trip to the grocery store) "They don't have cherry or blue raspberry popsicles. Do you want strawberry, mango, lime, or pineapple? . . . No? OK, well I guess I'll just come back home [empty-handed]."

 

-          "I know you can't sleep, but it's 1:00 in the morning, and I would like to sleep. Can you please, please, please just stay in your room and do a quiet activity?"

 

-          (Shouting across the house) "The remote control is two feet away from you. Do you really need to me to come in there to hand it to you?"

 

My daughter didn't want to miss the expedition to get our Christmas tree last weekend, but then she spent most of the time in the car, crying to go home.

 

My older daughter was sick too – with a different illness – and missed two days of school this week.

 

My father-in-law just left the hospital after a three-week admission. We spent part of Thanksgiving Day touring nursing homes.

 

The most wonderful time of the year?

 

The weeks preceding Christmas are some of the most difficult of the year. I sound like the Grinch, but the notion that everything should be joyful and perfect right now sets up unrealistic expectations.

 

My dizziness – my main symptom of MS - has been acting up this week, probably because I'm stressed and sleep-deprived. Chronic disease doesn't pause for the holidays. We still have to take our medicines and battle fatigue and struggle with bodies that don't want to do what we tell them to. PLUS, we have to shop and plan and cook and send holiday cards.

 

All this forced cheerfulness is draining.

 

I know I'm not alone. Many of my patients over the years have faced terrible loneliness and depression during December. The message everywhere seems to be "If you're not blissfully happy and surrounded by loving friends and family, there is something wrong with you."

 

Maybe there's something wrong with that message instead.

 

Well – I gotta run. Did I mention that we are hosting 60 people tonight for a holiday party?  

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Facing a New Diagnosis: What the hell just happened to my life???

A favorite path in Pease Park, near downtown Austin

"You have MS."

 

What?!? That can't be right…seriously?... NO! I'm fine. You're mixing me up with someone else… At least it's not a brain tumor… but what the hell?..  that just can't be right…

 

That mishmash of thoughts at the time of an MS diagnosis, as with many other serious or chronic diseases, can be so loud and alarming that everything else is shut out. The analogies are endless – you're being sucked into a tornado, sinking to the bottom of the ocean, suffocated under an avalanche. I remember feeling numb, dizzy, confused, and horrified all at once.

 

It's hard to think of what's next, to imagine a life after the diagnosis.

 

But there is a "what's next," and you will get past that initial shock and move on. Here are some of my thoughts on how to cope at the time of a new diagnosis:

 

1)      Take a deep breath. Then take another one.

 

2)      Feel and just be present with your grief. Cry and scream. It's not fair. It's not right. You don't deserve it. Feel all of that frustration, without judgement. Then, after hours, days, or weeks, you stop, take another deep breath, and deal with it.   

 

3)      Don't run to the Internet. Google is not your friend in the moments after a diagnosis. Someone close to you might be able to take on the role of "researcher" and synthesize the information for you, but researching your condition early on can be overwhelming and demoralizing. Give it some time before trying to become an expert.

 

4)      Tell someone. Or share more widely, as appropriate. Getting support from trusted friends and family early on is critical. Of course, sharing big health news can be risky in some situations, so you want to weigh the pros and cons and be thoughtful in your approach. But make sure someone who cares knows what is going on and can help you figure out your next steps. (See my earlier post on support circles.)

 

5)      Get a good doctor. If the diagnosing physician is not able to manage your MS or other chronic disease, ask for advice to find the best specialist. Recommendations from others can be helpful as well. If at any point you are unhappy with the doctor providing your care, you might try talking to the doctor to see if your concerns can be addressed. If not, don't be afraid to seek care elsewhere.

 

6)      Choose coping strategies wisely. Reasonable coping strategies include talking with loved ones, exercising, meditating, listening to music, even distraction with work or productive pursuits. Avoid self-destructive strategies like alcohol, drugs, overeating, or excessive spending.

 

Perhaps most importantly, keep in mind that while life may not be the same again, it will continue. MS to me was a black cloud, suddenly obscuring my future. It took me months to get past my feeling of doomsday, my tragic fantasies. But I've found that while the silver lining is elusive at first, it is worth looking for, because it's usually there.  

 

What tips do you have for others facing a new diagnosis? Please add them in the comments below.

 
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Take a Break!

Exploring Meow Wolf in Santa Fe with my 3 lifelong friends. From left to right: Me, Hannah, Laura, & Rachel 

I don't take breaks. I spend my mornings, afternoons, and evenings racing around like I'm competing in a track and field event. Get up – exercise (while reading materials for work) – get kids to school – work, work, work. I don't stop for more than two to three minutes for a meal – just to heat something up or throw together a salad. If I have a doctor's appointment or an infusion day, I bring my laptop and just keep going.

 

I pack my schedule like an overstuffed suitcase. I strive to be a master of efficiency, and I don't want to miss out on anything. Since I was diagnosed with MS, I'm even more aware of time slipping away. Who knows how long I'll be able to exercise, or get the kids to school, or work? I need to do everything now because I don't know how long now will last.

 

The problem, of course, is that I do miss out. All the details, the time to breathe, the time to be present with my friends and family. I am too busy racing to the next thing on my list.

 

I recently was introduced to the concept of PREcrastination. The term seems to be defined in different ways, but I discovered I am the type of precrastinator who puts off breaks and fun until all unpleasant and difficult tasks are accomplished. (And that happens when?) Although I pride myself on not procrastinating, I now realize that I am a skillful precrastinator.  

 

But this weekend I took a break. I put my life on hold for three short days to escape with friends to Santa Fe, New Mexico. One of the great blessings of my life is that I have three friendships that have endured since about the time I learned to read. My friend Hannah – a fellow MS Warrior – and I were born four months apart and have been friends since before we could talk. My other two friends who joined us in Santa Fe, Rachel and Laura, were close friends with Hannah and me in elementary school. Our lives have taken different paths, and we had not all been together in 17 years.  

 

We spent the BEST weekend together. Our hikes were long, but leisurely. We looked for rocks, noticed the light on the aspen trees and the lone bright yellow flower next to the path. We admired the stars, unencumbered by the light pollution of a big city. We packed in a lot – including visits to Meow Wolf (a crazy, interactive art exhibition) and a trip to the spa. I did have a seriously overstuffed backpack – unusually heavy with my new rock collection - to carry home.

 

I arrived back in Austin to a messy house, piles of laundry, unanswered email, stacks of regular mail. I needed to go grocery shopping and plan the week. But that break - and reconnection with my oldest friends – was so rejuvenating that the catch-up has been OK.  I need to do it more often. I need to take shorter breaks during the day – to meditate or stretch or take a walk. I need to see friends more often, to disconnect from media and technology in order to connect with the people I love. Please join me in taking more breaks and share your experience below.

 
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Stop telling me to vote!

Block walking with my new friend Mayra from Workers Defense

Stop calling me! I don't need another reminder to vote.

 

What? I have 28 NEW email? I just deleted everything like 15 minutes ago. Oh right – more pleas for money and volunteers.

 

So now you're texting me? I just donated 30 minutes ago, and now you want more? How about some gratitude?

 

 

These are all election-related thoughts I've had over the last few weeks.

 

But even though I'm irritated, I am relieved that others are so dedicated to keep calling/texting/stopping by/emailing.  It feeds my underlying guilt that I need to do more, more, more, but each interruption is still a little bit of hope.

 

My overwhelming stress/concern/frustration is that we are so close in Texas – and many other parts of the country – to making change happen in a big way next week. But we can only do that if people vote. I'm worried they won't. I'm worried they will be too disconnected, disengaged, cynical, hopeless, angry, and disempowered.  I hope I'm wrong.

 

I am from a political family – VERY political. My dad was elected to the Texas State Senate when I was 11 days old. He has spent his entire career in public service; I have spent my entire life supporting that career. We didn't go to baseball games or on camping trips when I was a kid. Instead, I rode with my dad in parades, went to fish fries and barbeques, shook hands at fundraisers, and smiled through long speeches. My dad is running for Congress again now, and I couldn't be more proud of his incredible tenure in the U.S. House. Elections are a very big deal for my family – our Super Bowl, our Academy Awards, but with much more at stake than a game or awards ceremony.

 

Now I also look at this election from the perspective of a patient. And the "elections don't matter" argument, espoused by many non-voters, now makes me madder than ever. Those of us with chronic disease are especially vulnerable to the whims of our leaders and special interests – the big pharmaceutical companies, the health insurers. In the next couple of years, decisions by those leaders could matter A LOT to people like me:

 

· They could make it hard or impossible for those of us with preexisting conditions to get health insurance.

· They could rein in the cost of prescription drugs, or they could continue to let them go unchecked. (Drug costs for MS routinely surpass the $60,000 mark per patient per year!) 

· They could restrict or allow access to certain medications that help people with MS.

· They could require reasonable quality standards for health insurance plans or allow junk plans to be sold.

 

Other issues are at stake too, like global warming – and our government's terrifying refusal to adequately recognize and address it. The consequences of climate change will soon touch nearly every living thing on this planet. I am not exaggerating or fear-mongering; we are on the brink of a point-of-no-return disaster with our climate. 

 

Public education, immigration, gun violence, workers' rights, poverty, the racial divide – these only scratch the surface of the issues that will be impacted by the outcome of this election.

 

Yesterday, I was honored to join a group from Worker's Defense in South Austin to block walk, urging everyone to get to the polls. This time I was the one interrupting people from their Saturday morning routines, annoying some and hopefully motivating others. On Election Day, November 6, I'll make phone calls to remind folks to get to the polls. This election is critically important for me, for my kids, for our community, and for everyone.

 

Please share what you're doing to help get out the vote and to support your chosen candidates during the next week. For more info and voting resources, check out VOTE411 or any number of other online resources.

 

And if someone knocks on your door to ask for your vote or remind you to cast your ballot, be friendly, and thank them for stopping by.

 

 
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Eat Your Veggies: Sneaky ways to add more to your diet

Here's my plot in the community garden last winter - a great source of veggies for my family. (I'm hoping soon the new fall/winter garden will look this good.)

FIVE servings a day of fruits and vegetables. MINUMUM. That's a pretty universal recommendation from nutrition experts. Yet, only one in 10 U.S. adults eats enough, according to the Centers for Disease Control. A plant-based diet, with lots of fruits and veggies, is one of the best ways to prevent cancer, heart disease, diabetes, and many other chronic diseases. Replacing less healthy options with fruit and vegetables can help people lose weight and keep it off. But it can be tricky to fit in those servings, especially if you're not used to it. Here are some ideas, especially to add more veggies to your diet:

 

1)      Eat more salad: These days salads are not just tasteless iceberg lettuce and tomatoes tossed with a store-bought dressing. With the right ingredients, salads can be exciting and make for a very satisfying entrée. Mix together different kinds of greens with whatever other veggies look fresh or in-season. Toss in nuts or beans. Add fruit – fresh or dried. Add a little olive oil and balsamic vinegar (no need to buy dressing), and voilà: you have a great meal with three to four servings of veggies.

 

2)      Choose veggie-centered soups and stews: With cooler weather coming, stews and soups can double as comfort food and healthy entrées or starters. When choosing a soup or stew in a restaurant or selecting a recipe to make at home, choose one with a lot of veggies. Go light on the cream and butter. Look for recipes with great combinations of colorful vegetables; you'll easily meet the serving recommendations and get lots of important vitamins and nutrients in the process.

 

3)      Grab a bowl: Bowls filled with veggies, sometimes with grains, beans, and/or an egg, have become popular over the last few years, and they are a great way to add veggies to the diet. Combinations like quinoa with roasted Brussel sprouts, broccoli, carrots and avocado, maybe sprinkled with toasted pumpkin seeds or pecans, can be a delicious way to get more veggies in the diet.

 

4)      Go vegetarian: You may not want to give up meat altogether, but choose at least one day a week to try out life as a vegetarian. Consider joining the movement for Meatless Mondays, for example.  It may help you shift your focus from seeing meat as the centerpiece of the meal and come up with more creative – and healthy – veggie-centered alternatives. Check out this great article from The Guardian on how a plant-based diet also helps the planet!

 

5)      Snack on veggies: Baby carrots, cucumber slices, or celery sticks make great snacks, and are much healthier than chips or cookies. Keep some handy in the refrigerator along with hummus or a healthy dip.

 

6)      Try baked sweet potatoes: Yams or sweet potatoes are far more nutritious that regular white potatoes. They also make a satisfying and healthy entrée, especially when stuffed or topped with other veggies like green peas, beans, or roasted peppers.

 

7)      Fill a tortilla with veggies: In my hometown of Austin, Texas, we live and breathe tacos. Tortillas filled with veggies are my favorite. Try black beans with sautéed spinach and mushrooms or carrots and broccoli. Pour on the salsa and add some guacamole for even more veggie goodness.

 

8)      Smoothies! I know this article is on veggies, but fruits are great too. A super easy way to get in three to four servings is by making smoothies in the blender at home. With frozen bananas as a base, add other in-season fruits and milk, juice, or a non-dairy alternative; mix; and you're left with a delicious healthy beverage, which can even work as an entrée for any meal. I sometimes throw in veggies with the fruit too: frozen kale stems (from my garden) are my favorite.

 

Share your ideas below. Adding more veggies to your diet is an excellent way to improve your health and feel better.

 

 
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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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