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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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Musings on Uncertainty

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

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

 

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

 

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

 

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

 

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

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

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

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

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

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

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

 

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

 

 

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Overcoming Ambien - and learning to sleep again

Sunset on Day 1 of the MS150

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

 

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

 

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

 

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

 

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

 

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

 

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

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

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

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

Avoid using alcohol to fall asleep.

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

 

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

 

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

 

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

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Self Care: Part 2

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

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

 

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

 

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

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

What do you advise patients to do?

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

Do you take vitamins or supplements?

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

What about exercise?

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

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


Tell me your thoughts about incidentalomas?

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


Do you watch your weight?

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

What do you do in general to keep healthy?

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

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

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

What are your hopes for medical care in the future?

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

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Self Care Part 1

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

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

 

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

 

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

 

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

 

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

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

How often do you get medical check-ups?

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

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

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

Do you get your cholesterol checked every year?

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

What about tests for prostate cancer screening?

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

Which screening tests do you undergo?

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

Do you undergo screening for osteoporosis and vitamin D levels?

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

Which ones do you believe save lives?

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

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Biking with Gratitude (and My Mom)

On the Southern Walnut Creek Trail with my mom

I'm dizzy after my bike ride today: 40 miles on the Southern Walnut Creek Trail and around Lady Bird Lake with a little time on the road too. Dizziness is my most significant reminder of MS – it was the first major symptom I ever experienced and the annoyance that prompted me to seek out the doctor, who ordered the MRI, that led to my diagnosis.

 

But never mind! Today, my dizziness is overshadowed by gratitude. I am grateful for my mom, who accompanied me on my ride today (she is 71 and had a knee replacement last summer, but is unstoppable on the bike); for the cool, sunny weather (though maybe not so much for the overly exuberant breeze); for a functioning new bike; for my kids, who got themselves up and ready for the day without my help, while I completed my ride; for the support circle of people who helped cart my kids around to activities later today, giving me space to recover and write.

 

When I was out on the trails today, I realized that I am able to ride because of the millions of people who have trained and fundraised for this ride – and similar rides around the country – in the past. The commitment and concern of so many people over the years has enabled the discovery of medications and other treatments that now keep me, and so many others, healthy.

 

I remember hearing that just a couple of decades ago, the medical approach to MS was "diagnose, then adiós," meaning that after confirming a diagnosis of MS, the doctor would say good-bye because nothing else could be done. Back then, it was "5 years to a cane, 10 years to a wheelchair." But now -thanks to new medications, vitamin D, and a healthy lifestyle - 8½ years post-diagnosis, I am training to ride a bike 160 miles from Houston to Austin. Hallelujah!

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Strategies for Building and Strengthening Your Support Circle

Thanks for the great feedback and encouragement from everyone on my first blog post. I am feeling well-supported, indeed!

 

I wanted to share some thoughts now about how to strengthen your support circle, and I welcome readers to add more ideas in the comments below.

 

For those feeling disconnected, here are some suggestions to meet others and start to build or expand your support circle:

 

1)      Get involved in groups you care about: your kid's school, a place of worship, a nonprofit fighting for a good cause. This is a way to meet people with common interests and shared values.

 

2)      Volunteer! I recently met many of my neighbors at It's My Park Day here in Austin as we pitched in to clean up our community garden. Local newspapers, radio stations, and websites advertise upcoming volunteer events.

 

3)      Reconnect with long-lost friends and family: Track down those with whom you once were close but have lost touch. Reach out to more distant family members who you may not have seen in a while. Social media can help you reconnect, but a phone call or even meeting in person is better!

 

4)      Join a support group: This idea may seem obvious, but it can be daunting to reach out to a group of strangers to discuss a painful topic. However, support groups can be extremely beneficial. While I believe getting together face-to-face can be more healing, even online support groups and chat rooms can offer a certain level of camaraderie and advice.

 

5)      Take a class: Schools, colleges, art and athletic organizations offer classes for adults on a myriad of topics. Some classes are free, or scholarships may be available. I met one of my now-best friends in a mountain biking class 15 years ago, offered by the local community college. I rarely get to mountain bike these days, but I still see my friend regularly.

 

6)      Start a meet-up group: Pick an activity you love and invite others to join you. Find friends to exercise with you. Invite other parents to meet up for a regular playdate for your kids. Start a book club, a supper club, or a movie group.

 

7)      Meet your neighbors: Getting to know the people who live nearby can be fun and beneficial. Offer to pet-sit or water the plants when your neighbors are out of town. Double the recipe if you bake cookies, and take a plate next door.    

 

Please add more ideas below. Also, check out this wonderful post in Psychology Today about the importance of relationships for our well-being and more suggestions for building connections.

 

And remember, the best way to develop and maintain a strong support circle is to be part of the support circle for others. The reciprocity principle is alive and well in our culture. If you reach out to help others, they will likely be there for you when you need support.

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Support Circles - for Multiple Sclerosis and Beyond

Me with Don - the most important link in my support circle (March 2018)

I don't like to keep secrets. And in the fall of 2009, I had a big one: a new diagnosis of multiple sclerosis. Who should I tell? I am close with my family, and I told them right away. But who else should know? 

 

"It's considered a disability," my mom said. "People may see you differently. Do you really want to tell everyone?"

 

I rarely disagree with my mom, but in this case, I opted for a widespread broadcast. I called my colleagues at the clinic where I worked as a family doctor. I emailed friends and cousins. "I have MS. I thought you should know."

 

I provided more details: the dizziness and visual changes that led to my MRI that led to my diagnosis, the concerns about future disability, the potential impact on my career, my husband, and our daughters (aged two and four at the time).

 

Was I bold? Was I foolish?

 

Neither. If anything, I was, perhaps, selfish. I was lessening my burden by sharing it and asking for help. I was relieving myself of the pain of carrying around a secret, of building more barriers to protect it when it didn't need to be protected. I couldn't have articulated it at the time, but most importantly, I was activating my support circle.

 

Like a magnetic force suddenly unleashed, my news brought well wishes and offers of help from all over:  home-delivered meals, cards of support, offers of playdates for my kids. I was overwhelmed with the generosity that bolstered my husband Don and me during those frightening days as we faced tremendous uncertainty.

 

I went from knowing no one with MS, to finding connections with half a dozen fellow MS patients who offered me - a stranger with nothing to give in return - encouragement, advice, and proof that my life wasn't over.

 

It was still a risk. Not everyone can share such news freely. People have lost jobs and friends when revealing illness. Even I have not been consistent over the years in sharing my MS diagnosis, especially with new bosses and colleagues. But over time, I usually have opened up to them as well. I have been lucky; I don't think anyone's reaction has ever disappointed me.

 

I was reminded of the importance of a support circle during my father-in-law's recent hospitalization for a sudden and unexpected illness. Twenty-four hours after hearing the news, Don was on the plane flying across the country. He had to go. It's just what you do when you are at the top of the unwritten list of support circle members for someone, as he was for his dad.

 

While Don – also a physician - was with his parents, he met his dad's doctors. He discussed treatment strategies and options for care upon hospital discharge. He also identified more people in his dad's support circle. Two aunts and an uncle would be there to help his parents when he had to return home. "We got this," they assured him.

 

Over my years of patient care, I have seen many people without a support circle. Or sometimes I have felt that I, alone, am the support circle. Some of them have suffered terrible losses, leaving them alone. Others have moved frequently, losing connections with each relocation. New immigrants may be especially vulnerable, uprooted from family, isolated by culture and language differences. I search for their strength - a bright personality, resilience, hidden talents and skills. Many have demonstrated great courage and fortitude. Over time, they will find their support circle, and I have been honored, at times, to help in that process.

 

In my next post, I will offer ideas on how to build and strengthen your support circle. For more lessons I've learned as a doctor turned patient with MS, see my article on CareDash: https://www.caredash.com/articles/8-lessons-learned-by-a-doctor-turned-patient. Thanks for reading!

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