instagram pinterest linkedin facebook twitter goodreads

Blog

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.  

 

5 Comments
Post a comment

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?

1 Comments
Post a comment

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/

1 Comments
Post a comment

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…

Be the first to comment

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.

2 Comments
Post a comment

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.

 

 

Be the first to comment

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!

Post a comment