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Self-Advocacy

As a doctor, I always advocate for my patients. As a person living with MS, now I have to advocate for myself too.

Are you kidding me? Another $749 out-of-pocket… just for lab tests?

 

It was another unexpected medical bill, even more irritating than usual because I had called the lab before the test was done to clarify the cost. The lab had assured me I would pay no more than $200, even if my insurance company failed to pick up the tab.

 

It was New Year's Eve, after 5 p.m., when I got the bill, so I had to wait until after the holiday for an explanation. Meanwhile I stewed. My deductible was met–it was the end of the year. I didn't even understand what the expensive lab test was. Even with Google and a medical degree (I'm a family doctor), I couldn't figure it out...

 

READ THE REST on the National MS Society's MS Connection Blog.

 

 
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Psst... It's a secret: I kind of like Infusion Day

My most recent Infusion Day earlier this month was a calm, relaxing experience. 

Needles, tubes, IV poles. A medicine dripping slowing into my veins.

 

And somehow, I find myself almost looking forward to Infusion Day. It feels almost like - dare I say? - a day at the spa!

 

OK, so I don't like the reason that I have to get the infusion. And getting an IV placed and being stuck in a chair for hours isn't usually part of the Deluxe Autumn Spa Package. I don't enjoy the prep involved either – getting labs drawn, sometimes an MRI, insurance company issues. But I'm fortunate that I don't have any side effects from my medicine. And I've realized the actual infusion day can be kind of great.

 

Getting my infusion every six months is nearly a full-day affair. From start to finish it's a pretty solid six hours. But I have learned to enjoy it (though I don't want to share that too widely, since I still like the sympathy from my family when reminding them, "I have to go in for ANOTHER infusion!").

 

On the day before my infusion (if I remember), I pack my special Infusion Day Kit:

-     Fluffy socks

-     A blanket or warm, cozy sweatshirt

-     Ear buds and music (I have Spotify on my phone, but any music-playing device will work)

-     Snacks/lunch

-     Travel mug (filled with warm herbal tea right before I leave for the clinic)

 

When I get there, I organize my space, placing everything I need within easy reach. Then I sink into the chair. I can relax. I have all day.

 

The room is peaceful. The enormous red chair is super comfy. I listen to spa music, usually acoustic guitar. The interruptions are few (if you don't count the inflation of the blood pressure cuff every 30 minutes).

 

I take a less sedating antihistamine [fexofenadine (Allegra) is best] beforehand rather than the usual Benadryl most people receive. My doctor has let me make that adjustment because I don't want to waste my time sleeping. I bring my laptop and get to work.

 

I work for a national care management company, and I am immensely grateful that I can work remotely, most of the time. I limit phone calls on infusion days, and I often find that my work is more productive than usual with no distractions.      

 

I get up to make tea – or sometimes the nurses get it for me. I take a short break for lunch, or I eat while watching a webinar.

 

I feel a quiet, unstated kinship with the other patients, the other MS Warriors. We are united by hope.

 

At the end of the day, I'm done. No more medicine to take for six months. I've done something important for my health, and now I can try to forget I have MS and move on.

 

 
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Fish juice-soaked luggage, forgotten pants, and security line mishaps: Lessons learned from my air-travel mistakes

I love to travel, but flying (especially overseas) is always a challenge.

"What the hell are you doing?"

 

"Oh my god. I am SO sorry." I was mortified. I had been trying to fit my daughter's suitcase into an overhead bin on an early morning international flight, but in the process, it slipped out and knocked a woman in the head.

 

Her partner was not amused. "WHAT were you thinking?!? Why didn't you ask for help?" he snarled. I was afraid he might bite me.

 

Those were the same questions I was asking myself, as I confirmed the woman I had hit was neither bleeding nor unconscious.

 

"I'm so so sorry… Are you OK? Oh my god, I'm so sorry."

 

Air travel is hard. Air travel with MS is even harder. Mobility may be a challenge. You may have dietary restrictions or heat intolerance. Yet if you love to travel like me, flying often is a necessary part of the process.

 

Here are some mistakes I've made and the lessons I've learned the hard way:

 

1) Don't knock anyone in the head. The corollary, of course, is Ask for help. Be gracious, be apologetic, but if you are not 100% sure you can lift your suitcase into an overhead bin, or walk down the jetway unassisted, don't attempt it alone.  If you're afraid you might spill your drink because of weakness in your hands, ask to keep the whole bottle or can. You don't have to prove anything – you don't even have to explain why you need extra help. It's OK.

 

2) Don't pack a bomb shell in your carry-on bag. I didn't think that the "trench art" vase I'd bought in Bosnia might cause problems at airport security, but when the agents pointed out that it was made from a bomb casing, I could see their point. Be careful about what put in your carry-on bags. If you have prescription medicines, especially those that require a cold pack, make sure to have the printed prescription, or something to indicate what the medicine is, to avoid any hassles. Make sure your liquids meet the size restrictions. Check out the Homeland Security website for more info.

 

3) Don't wear shorts on the plane. Dressing in layers for plane travel is essential. Often in the summer the planes are baking on the tarmac and miserable for a heat-sensitive person with MS, but once you're in the air, the zealous AC can overcompensate. Be thoughtful about your travel-day clothes: wear sensible shoes (I am always stunned by the number of women in heels at the airport!), comfortable pants, and, if it's summer, a lightweight shirt (but make sure to bring a sweater or jacket in your carryon bag).

 

4) Don't get putrid fish juice all over your checked luggage. I didn't know that commercial airlines ever carry frozen fish alongside the passengers' checked bags, but when we picked up our four bags in San Diego for a family vacation a few summers ago, all four bags were soaked with stinky water that had spilled out of a container with dead fish. We spent the first day of vacation doing laundry, and part of the week suitcase-shopping. On nearly every flight since, we have carried on all of our bags, avoiding the often long delay at the baggage retrieval area… and any more fish juice incidents.

 

5) Don't arrive at the airport 15 minutes before your flight takes off. This wasn't entirely my fault, but on a business trip this summer, the airline (the same one, incidentally, responsible for the fish juice) cancelled my flight and rebooked me at an earlier time. I wasn't notified until the last minute, and I nearly set a new Sacramento-area record for fastest run from drop-off spot to jetway. Although I made the flight, I was a flustered wreck by the time I sat down. Those of us with MS don't need that extra stress. Give yourself plenty of time to get to the airport, get through security, use the restroom, and grab a snack before getting on the plane.   

 

6) Don't forget your pants. Once I left for a 3-day business trip wearing some casual capris, and I left my professional black pants at home. Why? Because I didn't make a list. With most trips, I make a packing list and stick to it. I save my lists so that now I have one for almost any type of trip: beach, mountains, visit to in-laws, New York City or Beijing – I'm covered. I make minimal adjustments, stick to the list, and I can usually fit everything into my carry-on bags, avoiding both fish juice and long delays at airports to retrieve my stuff.

 

I think the most important lesson is to Take care of yourself when flying. Bring extra snacks on the plane. Bring cozy socks for a long flight. Stay well hydrated. Plan recovery days for both your travel destination and when you come home. Avoid the temptations, such as free alcohol on international flights and endless inflight entertainment when you should be sleeping. Have a back-up plan in case your flight is delayed or cancelled.

 

The benefits of travel far outweigh the difficulties. Don't let MS – or any chronic condition – be an excuse to stay home. Make the necessary accommodations, and then go see the world! 

 

 
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I'm on a podcast!

Hiking in Telluride, Colorado earlier this summer. Hiking in the mountains is as good as it gets for me!

A huge thanks to Dr. Errin Weisman for giving me an opportunity to share my story recently on her thought-provoking and informative podcast, Doctor Me First.

 

You can check out my episode, Role-Reversal, and also hear other fascinating interviews with women doctors on topics ranging from "Libido" to "Burn-out" to "Wisdom."

 

Get inspired, and share your comments or feedback below.

 

 
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Sharing the News

Don't go it alone on your journey with a chronic illness.

"I have multiple sclerosis."

 

I've shared this news with family, colleagues, and friends – old and new – many times over the years. Sometimes I have been awkward and clumsy in my approach. Sometimes I've been embarrassed or feel guilty that I haven't shared the news sooner. Sometimes I've worried about the response.

 

In the weeks after my diagnosis, I revealed my status as "MS patient" to relatives, close friends, and my co-workers at the clinic where I worked. I set up a meeting with my boss and told her face-to-face. Keeping my diagnosis secret, I thought, would be more stressful and difficult than being open about it.

And… my little community rallied, offering playdates for my kids, delivering meals, sending cards and emails of support.

 

But unfortunately, this open approach won't work for everyone. I don't think MS carries the stigma it once did, but misinformation is still prevalent. Over the years, I have been more cautious about my revealing my diagnosis, though I've generally found that others respond well when I decide it's time to share.

 

Here are some tips I'd like to pass along:

 

1) There is not a one-size-fits-all approach to revealing an MS diagnosis. Take your time and strategize. Telling my parents was different from telling my kids, though they all needed reassurance I would be OK. My boss needed to know that I felt confident I could return to work – and I didn't burst in and tell her the first day but took some time to process and plan. I find it helpful to think about who I am telling and their likely reaction ahead of time, and then I consider the best approach to address their concerns.

 

2)  Be prepared to educate your audience about MS. In my experience, most people have heard of MS, but few know much about it. They may think: "It's some kind of brain disease."  Or, "It causes people to need a wheelchair." But that may be the extent of their knowledge. Few will know, for example, that we now have over 15 different medications that slow progression of MS, that while it can be debilitating, many people with MS live normal lives and are able to work, travel, and function like anyone else.  You can refer people to the National MS Society for more information if they are interested.

 

3) Be proactive: Share your feelings and symptoms, but also share your plan for getting treatment.  If you are starting from a place of complete hopelessness, the person hearing your news may be overwhelmed and discouraged from offering help. If you don't have a plan yet, it's OK to say, "I am so mad this happened to me, and I don't know what's going to happen next, but I'm going to figure it out."

 

4) Beware of the "fixers." Some people will offer unsolicited advice and flood you with get-well strategies. A co-worker brought me a book about restrictive MS diets days after my diagnosis. It was a thoughtful gesture, but I wasn't ready to radically alter my diet while adjusting to the news myself. A good friend with MS was offered essential oils to cure her – a well-intentioned, but misguided suggestion. While I appreciate the concern that these problem-solvers bring to the conversation, most of the time I find the best approach is to thank them and tell them I will discuss their suggestions with my doctor.

 

5) Ask for what you need. People want to help, but many don't know how. Tell them how to lessen your burden:  do you need help with housework, childcare, grocery shopping, transportation? If so, ask and be specific. If you don't need extra help, you can always say "Thanks for listening. That's all I need from you right now," letting the person know that nothing more is expected at the moment.   

 

If you feel that you can't share your news openly, at least tell someone. Don't go through your MS journey alone. The National MS Society offers support services and MS navigators who can provide guidance and advice.

 

Please share your stories and more tips in the Comments section below.

 

Please add your tips below for healthy living on a budget.

 

 

 
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Living Healthy on the Cheap: Diet and Exercise on a Budget

I exercise several mornings a week on a very old Stairmaster that I bought second-hand years ago. I get a great work-out without leaving the house!

I'm cheap. Though I like to think I've become more reasonable with age, I still can't shop or make travel arrangements online because I'll spend way too long looking for the best "deal." I wear shirts and sneakers with holes because it seems wasteful to throw something out that is still functional, if not fashionable. I continue to use electronic devices that are scratched and ancient, by most standards – I don't want to spend the money on the new version if it's not essential. 

 

Although sometimes I'm too stingy, I know that because of MS, I need to be extra careful with my spending habits.

 

I'm also passionate about preventive care and healthy living.  Over the course of my career, I've coached thousands of patients - usually people with low incomes - about how to exercise and eat a healthy diet. Fortunately for them and for me, healthy living doesn't have to be expensive. And the benefits, both short- and long-term, are well worth the effort and planning that may be involved.

 

Tips for exercise:

 

  • Exercise is free! You do not need to join a gym or get fancy equipment to work out and to get in shape. Ignore the ads for the latest gadget! Walking or running are great forms of exercise that can be done almost anywhere. If you live in a climate that keeps you indoors some of the year, you can still find a large indoor space, such as a shopping mall, where you can walk. In warmer weather, many cities have great public pools for swimming. Also, many smart phone apps are free and offer a wide range of exercise options that can be done in your own home with no equipment other than a chair. I like the Johnson & Johnson app, but there are many, many others.

 

  • Check out the YMCA: The YMCA has locations all over the country and offers sliding scale membership fees for those with lower incomes. My family and I love the YMCA for their excellent programs for kids, wide range of classes (usually included with the monthly membership fee), and great strength training and aerobics equipment. We have also found that our Y membership travels with us: We can use other YMCA facilities around the country for no additional cost.

 

  • Visit used sporting goods stores: One of my favorite and most convenient ways to get a great aerobic workout is on a Stairmaster that I bought, used, about 10 years ago. I work up a sweat on the Stairmaster several days a week, and I can read, watch a video, and even keep an eye on my kids while I'm working out. Second-hand sporting goods stores often have a variety of barely-used equipment. I like having a Stairmaster at home because I can work out no matter what the weather is like outside and be available for my family.

 

Tips for healthy diet:

 

  • Prepare your own meals:  Meals prepared at home often are healthier and less expensive than food purchased at a restaurant. Food prep doesn't have to be complicated or time-consuming. Online recipes are abundant and very helpful. Look for plant-based meals and avoid too much butter or high-fat dairy or meat. 

 

  • Focus on fruits and veggies: Try to get AT LEAST 5 servings of fruits and vegetables per day. Buy in-season produce to save money, and look for coupons, which may come in the mail or be available in fliers at the store. Produce at stores like Costco may be much cheaper than regular grocery stories, and you can freeze what you don't use to make smoothies or stews later on.

 

  • Look for the healthy options on fast food menus: If you don't have time to cook, and you're in a rush, seek out the fast food venues with healthier options. Many fast food venues have salads on the menu, which are usually a pretty safe choice. Choose fruit instead of chips or fries for a side item. Get tap water to drink – it's free and healthier than just about anything else you can order.

 

Exercise and eating a healthy diet are the most important forms of self-care. For us MS warriors and others with chronic disease, they may be even more critical to our health and well-being.

 

For more diet tips, checkout this Healthline article.

 

Please add your tips below for healthy living on a budget.

 

 

 
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Coping with an MS Diagnosis

Getting diagnosed with MS was a shock. But I've learned to make the best of it.

"You have multiple sclerosis."

 

The neuroradiologist was calm as he revealed my diagnosis. But I was stunned.

 

Suddenly everything made sense: the constant dizziness, double vision, taste changes. Even the numbness in my finger months before, the cloudy vision earlier that fall—it was all connected. But it was a terrifying and tragic moment, and the days and weeks that followed were some of the hardest of my life...

 

Keep reading here on the National MS Society's wonderful MS Connection Blog.

 

 

 
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Career + Parenthood + MS: An Impossible Combination?

My daughters, Ella and Clara, surprised me on Mother's Day with vegan pancakes and fruit salad. Despite my inadequacies as a parent struggling with a busy job and MS symptoms, my kids are turning out to be pretty terrific.

My daughters were two and four and a half. Every moment we were together, they wanted to play Candyland or build forts or make cookies out of playdough. When I wasn't with them, I was at the clinic, working a busy job as the director of a health center for uninsured patients. I struggled to help my patients cope with depression or chronic pain, control their diabetes or heart failure, find creative ways to fill their prescriptions. I barely had time to breathe.

 

Then I developed dizziness, cloudy vision, and taste changes. Learning I had MS, I felt like someone caught in a mob who has fallen down and is being trampled on.

 

The diagnosis was serious; the timing was terrible. Already, I was overwhelmed and exhausted. I had no time for hobbies, walks with friends, reading books, or other stress-reducing activities. My own self-care was suddenly urgent and important, and it had to be incorporated into my too-busy life. But how?

 

I made self-care a top priority. If I wasn't healthy, I couldn't be an effective parent or doctor. I had to be innovative and even a bit rigid with some of my self-care strategies. I couldn't play Chutes and Ladders or put together the alphabet puzzle every time the kids requested my participation. But I made it work, and I am thankful to have good health AND two well-adjusted, amazing kids now.  

 

Here are some ways I maintained self-care:

 

1) I exercised (and continue to exercise) every day. I do it first thing in the morning, before anyone else gets up. I bought a used Stairmaster to work out when my kids were too young for me to leave them alone at home. I took them with me in a jogging stroller when they were very young, and I wanted to run. Exercise is my antidepressant and key to my self-care strategy.

 

2) I asked for help. I reached out to friends and family and told them I was overwhelmed. My husband is a hospital-based pediatrician with long hours, often working weekends and evenings. I lined up friends to come over to help me with dinner and bedtimes when my kids were young. Often, they would bring a meal or help me cook. I think a lot of moms think they are supposed to "do it all." But when I admitted defeat, I found the support I needed to get through some tough years.

 

3) I maintained a healthy diet. I'm a vegetarian, and I have raised my kids to be vegetarian. We still eat french fries and mac and cheese sometimes, but we all aim for at least 5 servings of fruits and veggies every day, and I know we are all healthier as a result.

 

4) I never missed a visit or other appointment related to my MS. I have always taken my medications consistently, and I make sure to follow my doctor's instructions. As a mom, I know I can't afford for my condition to worsen; I have to be as healthy as possible for my kids.

 

5) I learned to say "No". I try to ask myself before committing to a new activity if I really have time to take it on, if it will bring me joy, and if it will benefit my family. If not, I usually let it go.

 

6) I learned to meditate. A few years ago, at the urging of some physician friends, I took a mindfulness-based stress reduction class. Learning mindfulness meditation helped me with anxiety, stress, and insomnia. It also helped me accept my MS symptoms and "live in the moment" in a more authentic way.

 

Being a working mom with a chronic condition will never be easy. Some days I am impatient and irritable, and I yell or criticize when I shouldn't. Sometimes I can't even blame it on MS. But after almost 10 years living with MS, I feel grateful that we have more good days than bad, and I'm proud that my kids are growing up to be thoughtful and caring young women.

 

Below, please add any comments, questions, or tips for parenting through difficult times. And check out this video of me interviewing my daughter, Ella, about what it's like to have a mom with MS. 

 

 

 
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Lessons from the Road

The morning of Day #2 was The Best! The "Challenge Route" through Buescher and Bastrop State Parks was the highlight of the MS150 ride for me. 

The MS150 pushed me to my limits, connected me with other MS Warriors and supporters, and brought intense highs and lows. I'm so glad it's over. And I'm so sorry it's over.  Here are some lessons from my weekend adventure, biking over 160 miles from Houston to Austin:

 

·         Pickle juice is really a thing. It is packaged and sold. It is a favorite drink along the MS150, available at every break point. It's supposed to help reduce cramps, and hey, it worked for me!

 

·         My mom is Super Woman. She is 26 years older than I am, and I yet I had to tell her – many times - to slow down so I could keep up during the ride. She never complained, never asked to rest, and never stopped inspiring me with her strength and perseverance. I need to buy her a cape!

 

·         I am not alone. Having MS can feel so isolating. Sometimes I feel like no one understands my struggle to live with my symptoms and the burden of uncertainty that MS has brought. But throughout the MS150 weekend, I met so many people who understood. Thank you, Michelle, Audrey, Reese, Mike, Lansing, Kristy, and everyone else who shared their stories or listened to mine and made me feel validated and valued.

 

·         I don't like a flat road. The first 40 miles of the route, through Houston and its suburbs, is devoid of even a slight incline. It's not hard, but it's boring. I prefer the ups and downs. Without riding uphill, you don't get to coast downhill. (I think there may be a metaphor here!)

 

·         Community is everything. The support from my Tacodeli teammates (especially team captain Lisa Steffek) and the MS150 community gave me hope and helped propel me forward. Bates, Cesar, and Luis drove from El Paso to ride with me. Along the route, I wore my "I Ride with MS" jersey like a badge of honor. Dozens of people offered encouragement, often as they whizzed past me on their bikes.

 

·         Setting and then accomplishing a goal feels great! I welcome the sore muscles and exhaustion because they remind me that I worked hard. For the rest of my life, I always want to be reaching towards a new goal, striving to do more. I encourage everyone to set a goal – something tough, but attainable - and Go For It!

 

Finally, I am overcome with gratitude. Thanks to everyone who donated to the National MS Society in support of my ride. (It's not too late to contribute if you still want to support their amazing work: http://main.nationalmssociety.org/goto/Lisa-and-Libby-Doggett.)

 

Thanks, also, for the encouraging texts, emails and well wishes from so many friends. Each one cheered me up - especially two-thirds of the way through Day #1 when I was ready to collapse.

 

I am so fortunate that I could do this ride, and I look forward to the next challenge.

 

Please share your most important goals below. Or if you rode the MS150 (or volunteered or cheered someone on), share your Lessons from the Road in the Comments below. 

 

 

 
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MS150 2019: I am really up for this?

My mom and I recently completed a 63-mile "training ride" during the LBJ 100 Bicycle Tour in the Texas Hill Country.

After months of training - 6 a.m. spin classes at the YMCA, long rides on the Southern Walnut Creek Trail, and the recent LBJ 100 ride in the Texas Hill Country - I am going to do it again: 168 miles from Houston to Austin during the last weekend of April. This will be my second time participating in the MS150, and for much of the time leading up to it, I've been feeling fine: I got this! But….

Now, as the weekend approaches, I am getting scared. Am I really up for this? I was in better shape last year. Even though I didn't decide to ride until five weeks before the race last time, I was running long distances and working out daily. Also, we had ideal weather on the ride last year - it can't possibly be that good again. And - dare I say it? - I'm sick of training! I've been struggling to get out on the trail. It's grueling and time-consuming. I can rattle off a long list of preferable activities.

But I have reason to hope I can do this again. My MS has been cooperating. I had some increased dizziness earlier this year, but it has dissipated. My recent MRI showed "no changes," indicating no disease progression. My cousin Bates, who helped me through every mile of the ride last year, is coming back again with two friends from El Paso to accompany me. And my mom, my most consistent support person throughout the course of my illness, is riding with me. Nine and a half years ago, she walked me up the stairs of my house, after the spinal tap that confirmed my diagnosis and then made me so sick I couldn't get out of bed. She was with me for my first ocrelizumab infusions. Next week, she will depart Houston with me and 9,000 more cyclists, as we head home on our bikes to Austin. She has trained so well that I will be struggling to keep up.

 

Last year, I was proud to join the ranks of the Top 300 Club of fundraisers, raising more than $7,500. This year, I've more than doubled my fundraising. All that financial support, which goes to the National MS Society's amazing research programs, advocacy efforts, and patient navigator programs, will also be a great motivation for me to finish this race. I am so grateful and humbled by the support from so many people who share my vision of a world free of MS. My trepidation will be my secret weapon: I'll finish this race and make you proud.

 

Thanks to all of you who have supported my race and have lifted me up in so many other ways during my difficult moments these last nine and a half years. If you want to learn more about the ride or make a contribution, please see my fundraising page: http://main.nationalmssociety.org/goto/Lisa-and-Libby-Doggett 

 

 

 

 

 
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Preventive Care, Part 3: Immunizations - Fact or Fiction?

This healthy woman has had all of her immunizations and preventive care! (Art work was provided by my daughter, Clara)

 TRUE or FALSE?

·         Vaccines may cause autism – we don't know for sure.

·         Flu shots are overrated and sometimes actually cause people to get the flu.

·         Immunizations contain toxic chemicals that lead to brain damage in children.

·         Vaccines can trigger immune reactions that often cause autoimmune diseases like MS.

·         Vaccines are a government conspiracy to create profits for pharmaceutical companies.

 

FALSE, FALSE, FALSE!


Immunizations are one of the most important advances in public health of all time. Immunizations save lives, reduce hospitalizations and overall health care costs, and improve quality of life. With rare exceptions, they are safe and well-tolerated. The evidence is clear that they do NOT cause autism or brain damage. The risk – if any - of vaccines triggering an autoimmune disease such as MS is very low and outweighed, in almost every case, by the benefits of immunization. Making sure you stay up-to-date with your vaccines is one of the most important ways to stay healthy.

 

Of course, always consult with your doctor about which vaccines are indicated for you. Live vaccines are not recommended for people on certain MS medications, for example. The National MS Society also provides excellent guidance on their website.  Depending on your age and other risk factors, these are the most common immunizations that are recommended:

 

1) Influenza: Flu shots should be given to virtually everyone, at every age, every year. The flu shot takes about two weeks to kick in, and mild side effects can occur. But flu shots do not cause the flu, and only rarely are they contraindicated. Flu shots are safe, and they save lives and prevent hospitalizations. Did I mention flu shots do NOT cause the flu? The CDC is a great source of additional info

 

2) HPV: HPV vaccine helps reduce the risk of many types of human papilloma virus (HPV) infection, which is responsible for nearly all cases of cervical cancer and genital warts. HPV also can cause cancer of the throat, vagina, vulva, and anus.  HPV vaccination is recommended to all girls and boys beginning at 11-12 years old and to men to age 21 and women to age 26. It dramatically cuts the risk of HPV infection and, therefore, HPV-associated cancers. Last fall (Oct. 2018), the FDA approved use of the vaccine for both men and women up to age 45, though studies of effectiveness in this older age group are ongoing.  

 

3) Shingrix: Hurray for Shingrix! Shingrix is the new shingles vaccine, just released in 2017. It is far more effective than the previous vaccine (Zostavax) at preventing shingles and especially its dreaded and painful complication, post-herpetic neuralgia. The CDC estimates that about 1 million people get shingles each year, and about 15% of them continue to have pain two years later. The Shingrix vaccine, recommended for adults beginning at age 50, is a series of two vaccines, separated by two to six months. It is more than 90% effective at preventing shingles. 

 

4) Td and Tdap: Td is a tetanus booster shot, and Tdap is a combination vaccine designed to protect us against tetanus, diphtheria, and pertussis. Rates of tetanus (an often fatal infection caused by spores of bacteria in dirt and animal feces) have fallen >95% since the 1947, largely due to the success of the vaccine. However, sporadic cases still occur. Those who are not vaccinated or have failed to get the recommended booster shots have a higher risk of infection. Pertussis, or whooping cough, is generally more of an annoyance to older children and adults, but it is a particular concern for very young infants, who can die from pertussis. By vaccinating adults - especially those who have contact with infants - we help create herd immunity and protect infants from what can be a dangerous infection.    

 

5) Pneumonia: Pneumonia continues to be a leading cause of hospitalization and death among older adults. An estimated 900,000 people get pneumococcal pneumonia each year, resulting in as many as 400,000 hospitalizations and 19,000 deaths. For adults, two different pneumonia vaccines are available (PPSV23 and PCV13). Each protects recipients against different strains of pneumococcal bacterial infection. The vaccines are recommended for all adults at age 65, but may be given earlier depending on other risk factors (such as having diabetes, asthma, heart disease, cancer, or being a smoker). They cannot stop all forms of pneumonia, but they cut the risk significantly and save lives.    

 

The adult vaccine schedule has become more complicated over the years. (I think the two pneumonia shots are especially confusing!) But your doctor can help determine which immunizations you need. And you should keep track of your immunizations and help remind your friends and family members get their recommended vaccines as well.

 

 

 

 

 
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Preventive Care, Part 2: Isn't having one chronic disease enough?

I finally made it to the beach this week in Puerto Rico. I spent the week skipping out to explore San Juan in between meetings for work. What a beautiful place!

I have MS. Isn't that enough? Haven't I already received my allotted dose of bad luck regarding my health?

 

Unfortunately, those of us with MS are just as likely as anyone else to develop other chronic diseases. Some of us may even be at increased risk, due to adverse effects of certain medicines and the disabling effects of MS itself, making it hard to stay active.

 

Many chronic diseases – like MS - are beyond our control. We can't do anything to prevent them. The causes are unknown, and the course of the disease is uncertain.  

 

But other chronic diseases, including some of the most common and damaging, are often preventable. While other factors, such as genetics and the environment, play a role, in many cases, our lifestyle choices - especially diet and exercise - can doom us to diseases like diabetes and heart failure or significantly improve our odds of a healthy, long life.

 

(Warning: I'm jumping on my soapbox again.) There IS a magic formula to improve longevity and quality of life. It's not trendy or exciting, but I can't emphasize it enough: Find a way to exercise most – or all – days of the week. Eat a well-balanced, mostly plant-based diet. Don't smoke. Don't drink to excess.

 

AND get tested for chronic disease. As with screening tests for cancer, screening for chronic disease can help identify risk factors and detect disease early, when it is usually easier to manage.

 

Heart disease and stroke are still the #1 and #4 causes of death, respectively, in the U.S. High cholesterol, hypertension, and diabetes all significantly increase the risk for both. Diabetes, which now affects 9.4% of the U.S. population – also can cause chronic kidney disease, blindness, and nerve damage and pain.

 

Screening tests are easy to do, and a doctor can order the right tests and help interpret the results. Here are some of the most important tests that are widely recommended:

 

·         Blood pressure checks should be done routinely at each visit with the primary care physician. Nearly 30% of U.S. adults have hypertension, which increases the risk of heart attack, stroke, and chronic kidney disease. Hypertension is sometimes called the "silent killer" because it usually doesn't cause any symptoms, yet it can still lead to significant damage.

 

·         Cholesterol screening is recommended for most men starting at age 20-30 and women starting at age 30-35, though guidelines vary and other risk factors for heart disease and stroke should be considered.

 

·         Diabetes screening should be done, especially since almost a quarter of people with diabetes are unaware of their condition. The American Diabetes Association recommends screening for type 2 diabetes annually in everyone starting at age 45 and in those younger than 45 with major risk factors.

 

·         Bone density tests are used to screen for osteoporosis, a condition that can lead to hip, spine, and other fractures by causing weak bones. Usually bone density tests are recommended for women beginning at age 65, but they may be considered earlier depending on risk factors. Older men may also benefit from bone density testing, depending on age and risk factors.

 

A couple other screening tests to consider include testing for HIV and screening for mood disorders such as depression and anxiety.

 

I'm stuck with a life sentence of MS, and I can't do anything to change that. But I am doing everything I can to avoid additional disease. I hope you'll do the same. Check out this amazing myhealthfinder app to find out exactly what tests may be recommended for you. And please share your stay-healthy strategies in the comments below.

 

 

 

 

 
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Preventive Care, Part 1: What Is More Likely to Kill Me? Cancer or MS?

Cancer screening detects cancer early and saves lives!

MS may cripple or blind me. It may even cut a few years off my life. But odds are much higher that CANCER, rather than MS, will kill me. No question.

 

Most people with relapsing, remitting MS (the most common type) are in a similar position. Many people with other chronic diseases also have reason to fear cancer. It remains a threat to all of us.

 

According to the National Cancer Institute, nearly 40% of us will be diagnosed with cancer at some point during our lives. Cancer remains the second leading cause of death in the U.S. (only heart disease kills more people).

 

Those of us with chronic disease may be at even higher risk of cancer. My MS medication works, in part, by calming down my hyperactive immune system. Is the trade-off an increased risk of cancer? We don't know. My medicine is too new, and the studies just aren't available yet. But I'm a little bit paranoid.

 

So what can we do?

 

A lot, actually:

  • Don't smoke – SO important!
  • Eat fruits and veggies, 5+ servings a day – more is better. Avoid processed and "fast" foods.
  • Exercise most days of the week – more is better.
  • Don't drink excessively (no more than 1 drink a day for women, 2 for men).
  • Get vaccinated against HPV, the virus that causes cervical and other forms of cancer, if you're under 27 (and possibly even if you're 27-45).
  • Stay up-to-date with cancer screening. 

Cancer screening catches cancer early, and it can sometimes detect pre-cancer before it becomes a serious problem. Cancer screening saves lives! Make it a top priority for your health:

 

- For women: Cervical cancer is caused by the HPV virus and can occur even in young women. Pap smears, to screen for cervical cancer, are typically done every 3 years beginning at age 21. HPV testing may be substituted for or done in addition to a pap smear in women ages 30-65 every 5 years. Pap smears can detect cancer early and can save lives. (Cervical cancer screening can usually be stopped for women after age 65, assuming adequate prior screening.)

 

- For women: Mammograms, to screen for breast cancer, are recommended for all women. Guidelines vary and have changed in recent years, but mammograms are usually done every 1 to 2 years starting at age 45 or 50. The doctor can consider your specific risk factors for breast cancer and help make a decision about when to start screening, how often to screen, and when to stop.

 

- For men: Prostate cancer screening for men, usually ages 55-69, is controversial, but recent guidelines recommend weighing the risks and benefits with a physician.

 

- For everyone: Colon cancer screening - via colonoscopy, stool tests, or other methods - is important for everyone, usually beginning at age 50. There are several different options, though the "gold standard" is usually considered to be colonoscopy. Those with a family history of colon cancer should start screening earlier.

 

- For smokers or former smokers: Lung cancer screening – via low-dose CT scan – is an option for smokers or those who have quit in the last 15 years, who are 55-80 years old. Talk to your doctor to discuss the risks and benefits.

 

For more information, check out the U.S. Preventive Services Task Force, Centers for Disease Control, or the American Cancer Society.

 

And do NOT rely on supplements, vitamins, herbs, or magic beans to prevent or treat cancer.

 

Stay healthy and safe, my friends. What are some of your stay-healthy and cancer-free strategies?  Please add your comments below.

 

 

 

 
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Lessons Learned as a Doctor Turned Patient

I am delighted to be contributing now to the National MS Society's amazing MS Connection Blog. Please check out my first post: https://www.msconnection.org/Blog/January-2019/Lessons-Learned-as-a-Doctor-Turned-Patient

 

 

 

 
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A New Year's Resolution That Could Save Your Life

I try to practice what I preach: This is me yesterday on a morning bike ride in east Austin. Staying fit is one of the most important ways to prevent chronic disease.

RESOLVED: I will catch up on preventive care in 2019!

 

Ugh! Another doctor's visit? More stuff to worry about? More tests and blood work and exams? Groan…

 

Yes, indeed. But your health is worth it! Hear me out.

 

As we consider goals and resolutions for the new year, I want to urge everyone to prioritize health, and especially preventive care. For those of us with MS or other chronic disease, preventive care is often overshadowed by more pressing matters: MRIs, labs related to our medications or chronic condition, visits with specialists.   

 

But preventive care - from screenings for cancer, diabetes, and depression to immunizations, exercise, and even family planning - is important for all of us. 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) is a good idea.  (See more of my thoughts here about the frequency of doctor's visits: https://www.rd.com/health/wellness/doctor-checkup-visits-guidelines/)

 

Over the next several weeks, I'll be writing additional blog posts with details about various aspects of preventive care. But to get started with a healthier new year, I recommend scheduling an appointment with your family doctor or internist to talk about your health-related goals, review recommended screening tests for cancer and chronic disease, and update your immunizations.

 

Here are some priorities for a healthier new year:

 

1)     Catch up on your health screenings: 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. For all women, testing for cervical cancer (age 21 and up) and breast cancer (usually starting around age 45 or 50) is strongly recommended. All adults also should be screened for diabetes, HIV, high cholesterol, 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. 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. 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)     Review your family planning/contraceptive choices: If you are of childbearing age, discuss family planning and contraception with your partner and physician. Ask yourself, do you want more children? Are you at risk of an unplanned pregnancy? Ask your doctor, "What are the different options for contraception, and what might make sense for me?" If you want to delay having more kids, ask, "At what point do I risk not being able to conceive? What are the other risks I might face by waiting?" (A huge issue today is that women are delaying having kids until it is often too late. Asking the right questions early may help avoid this problem).

 

4)     Exercise! Exercise has to make the list for anyone trying to lead a healthy life because it is SO important! Developing a daily (or almost daily) exercise routine can do more to improve health than any medication. Talk to your doctor, and set a goal: 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 my kids get up and 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.

 

Preventive care should be a top priority for everyone, adding quality and longevity to life.  What do you think are the most important ways to stay healthy this year? Add your comments below.

 

 

 

 
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The Diagnosis, and the First Year After

Near Santa Fe, New Mexico

Instead of a new blog posting this week, I'd like to refer you to two Quora posts I wrote recently about my diagnosis with MS and the year afterwards. 

 

I answered two questions:

1) How would you react if you were diagnosed with multiple sclerosis: https://www.quora.com/How-would-you-react-if-you-were-diagnosed-with-multiple-sclerosis

 

2) How was your first year after your multiple sclerosis diagnosis: https://www.quora.com/How-was-your-first-year-after-your-Multiple-sclerosis-diagnosis

 

If you like my answers, please upvote them on Quora. And please share your own experiences, questions, and comments below. 

 

 

 

 
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New Year's Resolutions or Reflections?

Artwork by Clara Williams (age 11)

I don't usually make New Year's resolutions. If I decide I need to change something in my life, I'll try to change it, no matter what time of year it is.

 

But, with the hecticness and stress of Christmas behind me, and a quieter week at home and work, I do find that the end of the year and the beginning of the new one are well-suited for reflection.

 

Several years ago, Don and I attended a mini-retreat about how to have "the best year yet." While I found it a little overhyped, one useful recommendation I carried away from that day is to review the year that has passed – alone or with a friend or partner – and consider what worked and what didn't, what lessons can be learned.

 

I am starting to do that now for 2018. Ok then…

 

What worked?

- Visiting friends around the country

- Traveling to well-appointed destinations

- Biking the MS150

- Starting dance classes for our older daughter; continuing swimming and rock climbing for the younger one.

 

My MS medicine, with its requisite infusions every six months, is tolerable with no noticeable side effects. It seems to be preventing progression so far.

 

What didn't work?

- Sending my daughter back to a middle school she didn't like

- Overscheduling myself and everyone else.

 

What have I learned?

- Don't be excessive with summer travel; staying in town for a few weeks will be OK.

- Connecting with others with MS is reassuring and empowering – I'm looking forward to more activities and involvement with the National MS Society this year.

- Prioritizing fun and family time leads to a happier life!

 

Perhaps the most important lesson of the year has been to leave room for the unexpected.  My father-in-law spent many weeks of 2018 in the hospital. A dear friend's child became very ill, and my friend asked for my help. My daughter had to switch middle schools only two weeks after starting 8th grade. I can't plan or prepare for everything, and I need to be limber enough to shuffle schedules, prioritize, and jump in when I'm needed.  

 

After rehashing the past year, I consider the year ahead. I try to think big (but be realistic) and set goals. Here are some of mine:

- Ride the MS150 again, this time with my mom.

- Learn about and experiment with vegan baking.

- Plan and execute a fun, enriching, and exciting summer for my kids.

- Read more books.

- Help my kids transition to new schools in the fall (one will start middle school and the other will begin high school).  

 

Share some of your goals in the comments below. For extra help, check out this article by The Invisible Mentor and consider investing in a copy of Your Best Year Yet  by Jinny Ditzlerthis. Here's to a happy and healthy 2019!

 

 
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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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