Self-Care Challenge Month 2: Diet & Nutrition

Last month I embarked on a Self-Care Challenge and invited you to join me. You can join at any time by reading the posts, contributing feedback in our Glass Half Full Facebook group, and using the Health Storylines online tool.

I’ve been practicing Self Care for years without even realizing it. Years ago, before I was diagnosed with a neuromuscular disease, I began to experiment with my diet. I didn’t necessarily have a bad diet but I often felt bloated, experienced abdominal cramps, and probably had what we now know to be irritable bowel syndrome.

I can’t recall what the impetus was but it happened over 30 years ago. I gave up eating beef. Within a year or two I was no longer eating any animal flesh and called myself a lacto-ovo vegetarian (plant-based diet with dairy/eggs). My bloating disappeared. My cramps were intermittent but I still had that occasional nervous stomach.

A diet is really a dynamic concept. It shouldn’t be fixed, i.e. eating the same foods every day. The seasons change and there are different foods to be consumed aligned with the season. Our bodies change. We continue to learn more about food, how food is prepared, nutrients and micronutrients. As I’ve learned more about food and nutrition over the years, I continue to tweak my diet.

Little changes can have a huge impact. When I started going for acupuncture treatments, 15 or so years ago, I was asked about my diet by the practitioner. No Western-trained physician had ever spent much time talking with me about my diet. Even when I complained of GI problems. I won’t even attempt to claim any real knowledge of Traditional Chinese Medicine (TCM) but there is a long history of food = medicine. The first change I made during my course of TCM treatments was giving up that big glass of orange juice I started each day with. That cold sugar hit was not welcomed by my belly.

I’ve learned so much about food over the years and if I shared it, this would become the longest blog post in history. But, that’s not what I want to do. My diet & nutrition journey is likely different from yours. Becoming a vegetarian has helped me, yet it’s not the only way to eat a well-balanced diet. There are plenty of vegetarians that eat poorly and plenty of omnivores that eat well.

In the next month I will post in the Facebook group…mostly factoids from various nutrition newsletters I read. Here’s the Self-Care Challenge for YOU:

  • Become aware of what you’re eating, how much of it, and how often. The best way to do this is with a Food Diary. Using the online Health Storylines tool, you can keep track of your daily intake using the Food Diary feature.
  • Knowing what you already know about good foods and beverages & bad foods and beverages, each week select one bad food to omit for a week. And try to eat a new food — something plant-based. I’ll help you with suggestions.

Remember, small steps in making health behavior changes are the key. Good luck!


Ready, Set, Go — Start Your Self-Care Challenge

What exactly is Self-Care? Years ago I used the term, Self-Management Health Behaviors to identify everything I did to enhance my health given that I was diagnosed with a chronic, progressive neuromuscular disease. Some of the behaviors were already my routine like eating a vegetarian diet and practicing yoga. As I learned more about positive health behaviors from a Stanford University program I took at my local hospital, I became more intentional about how I led my life.

Health Storylines Tool Library

Somewhere along the way these behaviors became known as Self-Care. You can find Self-Care articles everywhere — in all types of popular magazines, TV commercials — it’s entered popular culture. “As of 2012, about half of all adults—117 million people—had one or more chronic health conditions,” according to the U.S. Government’s Center for Disease Control. That’s tremendous!

Even though there are so many different types of chronic health conditions, there is a lot of overlap with symptoms. I have a rare disease but when I look at my individual symptoms — muscle pain, dysphagia, fatigue, respiratory weakness — I can learn a lot from more common conditions. And many of these common conditions have known self-care practices that help mitigate the symptoms.

Based on the Stanford research I became familiar with and my own research, I’ll categorize the self-care practices into these:

  • Diet and Nutrition
  • Physical Activity and Exercise
  • Emotion Regulation
  • Social Support
  • Relaxation
  • Medication

Once we identify our symptoms, we start to look for ways to alleviate these symptoms. What helps my muscle pain may not help your muscle pain. But, perhaps you’re like me, and you are open to exploring. The key, of course, is to explore self-care practices that have minimal if any negative side-effects. During the experimentation phase you may notice some connections; maybe you have less muscle pain on days you’ve slept at least 8 hours the night before? Or, if you have gastrointestinal issues, maybe your gut feels better when you haven’t eaten spicy foods?

It’s a lot to manage but once you hit upon some solid patterns and adopt new self-care routines, it can make your life so much better. It sure has for me.

This trial-and-error process can now be easier with the assistance of a tool. I’m thrilled to introduce an online tool — Health Storylines — to help with your self-care routines. I’ve been chosen to join a team of Self Care Ambassadors who are helping others with chronic health conditions practice self-care. We’ll be doing this together and each month I’ll take a Self Care Challenge with you. Make sure you’re part of our Facebook group so we can track, monitor, and motivate each other.

Are you ready?

Here’s what I’d like you to do over the next month:

  1. Register for the Health Storylines Tool. If you have questions about the registration process, send me a message via the Facebook group. You can use the Tool on a desktop computer, smart phone, or tablet. The data you enter will synch on all devices.
  2. Use the Symptom Tracker feature to list all of the symptoms associated with your chronic health condition.
  3. Using the Self-Care Practices categories above, make a list of self-care practices you already have as part of your routine. Maybe you attend a weekly exercise class? How does exercise impact your symptoms?
  4. You’re encouraged to explore the other features of the Tool on your own. But for the next month I’ll focus on symptoms and different self care practices that can help them. The goal is to take small steps toward changing your routines so you’re not overwhelmed and it makes it easier to maintain a steady practice.

Good luck and see you in the Facebook group!


Respiratory Challenges

Prepared for Overnight Sleep Study

You know when you have a progressive disease sometimes it seems like the next step — the new normal — is dramatic? It seems to come out of nowhere…whether it’s your mobility, your energy, breathing capacity, or any of the myriad of bodily functions that can decline.

Well, I’m there with respiratory weakness. Yet it didn’t really happen overnight. I can recall 10 or so years ago going to my annual visit at the Muscular Dystrophy Association Care Clinic and, after taking a rather simplistic diagnostic test, being told by the nurse that my breathing capacity was at 70%. I don’t think I took it seriously because the diagnostic device was rudimentary and I felt healthy.

A year or so ago I was supplied with a ventilator for night time use. The whole experience freaked me out and I couldn’t handle the forced air. I would sit with it for ~ 15-minutes and then stop. After a month or so I tried to take a nap with it. I couldn’t handle it. Long story short, I ended up returning the device. I told myself the pulmonologist was moving too fast…like installing an outdoor ramp over stairs when you’re still ambulatory.

This past winter was a difficult one for me — one respiratory issue after another and I didn’t seem to have a full recovery. I’m with a different healthcare provider now and went to see a new pulmonologist who scheduled me for a sleep study. It took a couple of reschedules on my part because I was in denial of what I must have known was the inevitable.

The overnight study was conducted in a hotel-like environment though it was far from a luxurious experience. The sleep technician set me up with a Bi or C-Pap machine at the start and I just couldn’t handle it. It was too forceful and I panicked. She wasn’t able to adjust the settings and eventually got permission to let the sleep study be a baseline without the intervention. I slept for ~ 6 hours. Within a few days I heard from a physician who analyzed the study; I’d never met him. His phone etiquette was…despicable. He admonished me for not using the machine and said I needed it. He also offered that I “have few options — the machine or a trach.”

This brief phone conversation set off a period of depression. I was not operating with a glass half full perspective. Thankfully my pulmonologist led me to what I thought was another pulmonologist colleague of hers but he is actually a Critical Care doctor. After our first meeting my spirit lifted. He is listening to me and really understands that I need to gradually ramp up to the optimal settings. 

These adjustments to a progressive disease — a new normal — are difficult physically and emotionally. I’m grateful to be working with a physician that gets it. I’m also grateful for two Facebook groups — one specifically for adults with myotonic dystrophy and the other for breathing issues related to having a neuromuscular disease. I’ve learned valuable information and received support from these cohorts.

So far I’ve acclimated to one air pressure setting increase and using the humidifier. I also fell asleep twice with both on. Small steps. That’s what I can handle. I’m feeling hopeful.


NorCal Resources Rock

I am so grateful for the move I made to Northern California in 1989…even if it included experiencing the Loma Prieta earthquake. This is really one of the most inclusive areas in our country, especially for people with disabilities. I know of a family that relocated to California from the Midwest so their severely disabled son could reap the benefits of the Regional Center’s services as well as other state resources.

And the Ed Roberts Campus (ERC) is definitely one of the amazing resources. Located in Berkeley, California — across from a major public transportation hub — ERC houses a number of federal, regional, state, and nonprofit organizations providing services and resources for people with physical and/or developmental disabilities.

Located at a fully accessible transit hub, the Ed Roberts Campus is a national and international model dedicated to disability rights and universal access.
The Ed Roberts Campus commemorates the life and work of Edward V. Roberts, an early leader in the independent living movement of persons with disabilities. Ed believed in the strength of collaborative efforts: He called it “working toward our preferred future.”

Yesterday I attended the Momentum Expo sponsored by the Center for Independent Living. Here’s a short video I shot while at the Expo. The event was free. I had the chance to find out more about new and existing organizations, promote the podcast, and see friends I know from various aspects of the Northern California disabled community.

One organization housed at ERC is BORP: Bay Area Outreach & Recreation Programs. BORP has an adaptive fitness studio at ERC where I take classes. In fact, Valerie Jew’s Integrative Healing class is there. Lately I’ve been attending a World Dance for All class held in the BORP fitness studio. The next podcast episode is all about Dancing so you’ll soon hear more about this class.


That Peaceful Easy Feeling

To celebrate my birthday, one of my requests was a day at the spa. Not just any spa but this Zen-style spa out in the woods about an hour and a half from where I live. It’s pricey but it’s an experience. And that’s what I’m after — experiences — not more stuff. I’ve got enough stuff.

 The day began with a lovely drive on the back roads of Sonoma County. It was unintentional but the GPS fed us this circuitous yet gorgeous route. I saw parts of Sonoma I’ve never seen — so green and lush — it’s amazing how just a drive through more nature, less concrete, can ease your tension.

The massage treatment I signed up for focused on the body’s meridians and included essential oils. Surprisingly, the 75-minute treatment has you wearing loose clothing; it reminded me of a Thai massage I once had. Although I usually dislike lying on my stomach, I went for it in spite of the nearly constant sinus drainage I experience. The therapist moved my limbs in different ways than an ordinary massage would necessitate.

I didn’t fall asleep but I was very relaxed. It’s often disconcerting that you have to get up so soon after a massage but I felt a little less pressure here. I wasn’t forced to face the world too soon. What awaited me after the massage was a beautiful meditation garden which you enter through a gate that requests silence.

In the last couple of years I have a new respect for silence. I crave it. Is this part of growing older? Or perhaps it’s a result of having a neurological condition where I often find my senses overwhelmed by bright light and a cacophony of noise?

Seated under a pagoda sipping warm tea, I just watched and listened (and naturally shot a little video). My body was relaxed, my mind was relaxed. I was in the moment.

Can I capture this moment again and again? I want this moment to last longer. I want this moment to repeat, and repeat, and repeat.


Outliving My Mom

This photo is about 30 years old. It’s one of the last ones I have with both of us before her cancer diagnosis. In older photos she wore those awful turbans to cover her nearly bald head.

My mother was diagnosed with myotonic dystrophy (DM) circa 1990 before there was a DNA test available. When my parents told me of this diagnosis they never mentioned it was a genetic condition nor that it was serious. All I knew was that she appeared before medical students at the University of Miami School of Medicine so they could see that one leg calf had less muscle tone than the other. She had more severe health situations than thin calf muscles and had been repeatedly hospitalized.

In 1990 there was minimal information available about DM. As it turned out, so many of her health issues (gallbladder and GI problems, early cataracts, daily fatigue, respiratory problems, etc.) were related to the disorder. In the last few years there have been scientific studies looking at DM and cancer which suggest that people with DM are twice as likely to have certain cancers. My mother smoked her entire adult life, was often depressed, and drank alcohol daily — creating a fertile environment for the lung and brain cancer which caused her death.

We have also learned through scientific research that myotonic dystrophy, in addition to being passed on with 50% probability for each offspring, has a component called anticipation. Essentially this means that the severity of the condition increases with each generation and often with each birth. My parents had another daughter nearly two years after I was born but she lived only three days. Now I know this child had the more severe congenital form of DM.

So tomorrow I turn 56 years old; my mother died 6 weeks before her 56th birthday.

Searching the Internet, shortly after I was diagnosed in the late ’90s, I discovered a table with data showing the average life span for adult-onset DM being between 48-55. My mother fit that data set.

So tomorrow is bittersweet. I like to think that all of my self-care and positive attitude has pivoted me beyond the dire expectations. Yet these past few months have proven to be physically and emotionally challenging. My respiratory issues, and subsequent sleep study, show that I need breathing assistance at night. My energy has a marked decline and I worry that I won’t be able to recapture it.

Birthdays can be difficult for anyone after a certain age but perhaps more so when you have this anticipated early decline…each year represents more loss to come. I’ll be celebrating with a few friends at a karaoke bar and hopefully that will kick my butt into a more glass half full perspective.


New Year Resolutions

New Year’s Resolutions

We’re a week into the New Year. As I understand, it’s still acceptable to talk about the new year and even make resolutions throughout the month of January. There is no mandate that this must happen during the first few days of the year. We want to be thoughtful, intentional…clear out the holiday fog.

I don’t know about you but last week my email inbox was filled with numerous offers to help me make resolutions for the new year. The vast majority of them have some monetary cost associated with them — make meditation part of your new year and sign up for this online course, maintain dietary goals for the new year by signing up for this meal plan, or buy these books to get you started for the new year. Whole Foods even mailed me a brochure titled, Feed Your Resolution: Solutions for Special Diets.

Thank you very much but I think I can do this on my own.

Actually, this may the first year I’ve not made any New Year resolutions. Basically, it’s all about change. We either want to start doing something different or stop doing something we’re doing which we know no longer works for us. Well, I don’t need the Gregorian calendar new year, Chinese New Year, or Jewish New Year to initiate any changes.

Having a chronic health condition is all about change — monthly, daily, and sometimes hourly changes. What may have worked for me yesterday, no longer does today and I’ve got to work around that to achieve my goal whether it is opening a bottle, getting nourishment, or soothing some pain or discomfort.

I am open to change…thankfully…because you know — a sure sign of insanity is repeating the same patterns and expecting different results.

Back to New Year resolutions, there’s certainly nothing wrong with making them. It’s the maintaining them that can be problematic for some. Here’s a short piece to help you with the process. Last year I interviewed a few friends about their resolutions. But I’ll resolve to continue learning and making changes on an as-needed basis…which is definitely more than once every 365 days.

 


I Won’t Be Home for the Holidays

I’m not a very sentimental person but sometimes something triggers that emotion and tears are shed. That happened today in my car as Frank Sinatra’s voice came on the radio  singing “I’ll be home for Christmas.” Frank Sinatra was big in my childhood. Although I identify as Jewish, half of my family were (they’re nearly all dead) Catholic and Frank Sinatra was a god for these first-generation Italian-Americans born and raised in Bensonhurst circa World War II.

Italian Christmas Dish

Holidays at our house included lots of music — Frank Sinatra, Mario Lanza, and, of course, Barbra Streisand. So I guess the sound of Ole Blue Eyes smooth baritone combined with the lyrics bolted me into a few melancholy moments. Once my mother passed away — some 25 years ago — I lost the excitement I usually had during holiday time. It’s not that I get depressed but I knew I had to create new traditions and new memories. And I’ve done that.

For the past several years my partner and I do a little Chanukah and a little Christmas but in our own unique style. We spend Christmas Eve putting together holiday-wrapped packages and deliver them to homeless people on Christmas Day. I definitely didn’t do this growing up in Florida.

This year we’re traveling to see family — my in-laws — which is a bittersweet experience for me. Being around a lot of people and children tends to make me uneasy — I have little control over the sensory environment, the food, and my ability to feel comfortable. And then I remember how I celebrated the holiday with my crazy, alcohol-laden family with music blasting, lots of delicious food, and waiting until midnight to open the gifts. Mario Lanza music blasting and my mother and neighbor singing loudly. Even if they were still alive, I doubt I’d enjoy all of the stimuli.

Getting back to the aforementioned song, Frank talks about going home…if only in his dreams. What is home? Some of us may live in the same place we grew up but that sense of home may still be different for us. Maybe some family members have passed away or we just don’t have the physical or emotional strength we once had? Or, in my case, it’s both. I can go from singing along with a Christmas song on the radio to exhibiting Scrooge-like behavior in a matter of minutes.

But I will try to keep a lid on the Scrooge during my holiday visit. And if I need to, I can resort to my dreams.

May you have a peaceful holiday season.

 


Pranayama

Yesterday I went to my second Pranayama class at a well-respected yoga institution celebrating 40 years of yoga education in the San Francisco Bay area. It’s a monthly session focused on different methods of yogic breathing. I’ve always wanted to learn more about pranayama (a Sanskrit word that translates to “extension of the prāṇa (breath or life force)” or “breath control”).

Alternate nostril breathing. There are many pranayama techniques; this is just one.

In traditional yoga, as I understand, the natural progression is from asana practice (yoga postures or stretches) to pranayama to meditation. And I want to take up Gareth Walker’s challenge to me — start a daily meditation practice. With pranayama I can practice respiratory health and integrate daily meditation into my life.

I have felt the benefits of meditation — even with isolated short practices. I crave that stillness.

In yesterday’s 1.5 hour class we began on our backs in a restorative pose. For most of the class we reclined in different poses and focused on breathing in our lower back — expanding the space for our kidneys. During the final third of the class we were in a seated position. And that’s when I felt it…sort of like floating. Momentary bliss. If I could capture and bottle the sensation I couldn’t use it that much. I couldn’t write a blog post feeling blissed or could I?

My bliss may be different than your bliss. I felt the release of all tension in my body. The release of all thoughts of past and future and was firmly rooted in the now. No physical or emotional pain or stress.

So I asked the teacher how to begin a regular practice. She told me a good way is to practice for 20-minutes at least 4x/week. Start in a relaxed pose and work up to the seated position. Sounds simple enough.


Embracing the Journey

A few weeks ago I attended a free resource fair in San Francisco at the Jewish Community Center. The event is called Embracing the Journey: End of Life Resource Fair. All of the resources — and panel presentations — are related to end-of-life decisions. It sounds like a real downer but it wasn’t. In fact, everyone was refreshingly friendly, inquisitive, and engaged.

Unfortunately I was only able to stay for an hour and missed panel presentations covering topics such as Loving Support and Choices for Pets During Transition, Preparing Financially for the End of Life, and Your Life Story: A Labyrinth Walk of Wisdom. But I did try to make a quick visit to each vendor and pick up any available literature.

Chalkboard activity at entrance to Embracing the Journey Resource Fair

There’s a great resource page with videos from some of the panel sessions.

Of course you don’t have to be Jewish to attend this annual event nor to benefit from the information presented. I am interested to know if a similar resource fair exists in your community — whether it’s organized through a church group, hospital, or government entity. Please leave a comment below.