Saturday, January 13, 2018

Life with Chronic Conditions: When They Can’t Figure Out What’s Wrong

Several people I know have a multitude of symptoms but no diagnosis. While this may seem frightening and unusual to them, many people have symptoms that they’ve been tested for in numerous ways yielding no definitive answer. Yes it would be nice sometimes if life could be like the TV doctor who figures out the mysterious illness and finds an effective cure all in less than 60 minutes. But that’s not reality and the elusive search for a diagnosis and ultimate cure can be a problem in and of itself.

As one doctor wrote, while there are many ways you can feel miserable, there are a finite number of ways the heart stops working causing death. Mystery Diseases (Diagnosing the Undiagnosable) The plus side of an extensive work up that yields no diagnosis, it also rules out the ways you could be at risk for premature death. Symptoms can get worse, persist or even get better, but in the interim, you aren’t going to die from them. Watchful waiting can sometimes yield the best results.

Please note that this pertains to adults and not children who have been experiencing symptoms from birth.

While you are “watchful waiting” consider the following.

You don’t need a diagnosis to feel better. Keep in mind that just because they can’t name your disease, it doesn’t mean you can’t get help controlling symptoms.

Mindfulness-Based Stress Reduction: Study after study continues to show that MBSR helps those with chronic conditions as well as anxiety, pain etc. I had an opportunity to hear the founder of MBSR, Jon Kabat-Zinn speak several years ago at an academic hospital. He stated emphatically that docs should send patients that they didn’t know what to do with to an MBSR program since they were getting good results. While you can do MBSR on-line for free, it’s best to do it as part of a group.

See another doctor: Describe the symptoms and let the provider draw their own conclusion. Giving them another doctor’s diagnosis right off the bat can skew their thinking. Consider doctors of different specialties as well as those who are part of academic medical centers

Keep a personal health notebook/diary: Log symptoms and triggers as well as tests done, results, medications you’ve taken etc. Some on-line tools to help you get started.

Check your Meds: Whether it’s an over the counter medication, vitamin, supplement or a prescribed medication, side effects and interactions are very possible as well as having one of them mask symptoms that can help your doctor make a diagnosis. Be sure to let your provider know everything you’re taking, dosage and when you take them. 

Could it be Environmental? Talk to people in your neighborhood to see if they are having similar symptoms. If you travel and find that your symptoms disappear, this could an indication of an environmental issue as well as a reaction to a stressful home environment.


Undiagnosed Diseases Network (UDN) is a research study funded by the National Institutes of Health Common Fund. The UDN is made up of clinical and research centers across the United States working to improve diagnosis and care of patients with undiagnosed diseases. Physicians and patients with additional questions may call 1-844-746-4836 (1-844-Ring-UDN).

Wednesday, January 10, 2018

Take a Break: Check out Ursula Le Guin’s Blog

As I write this I’m battling something nasty my eldest son brought home for Christmas. The presents were wonderful, as was seeing him. The cough, fever and yucks I can do without. However, I’m fortunate that my brother-in-law sent me Ursula Le Guin’s newest book, which is of her blog posts. Really interesting reading. You can follow her blog, which is indexed (she’s been writing it since 2010) at her website.

 Don’t know Le Guin’s work? She is viewed as America’s “greatest living science fiction writer,” thought it’s not a title she’s comfortable with. She is the author of the Earthsea Trilogy. 

Not interested in today’s activity, go to the Take a Break Pinterest and pick out something else.

Saturday, January 6, 2018

Life With Chronic Conditions: Embracing Change

I’m watching people in my community becoming unglued by upcoming changes due to school redistricting and the retirement of several principals. I came across a quote that I thought was not only appropriate for this situation, but also for anyone affected by chronic health issues- The secret of change is to focus all of your energy, not on fighting the old but on building the new.

People are trying so hard to keep things as they know them, they’re not only missing opportunities but they’re making themselves and everyone around them miserable.

Whether it’s a change in health status, loss of a job, best friend moves away or something else, the unfamiliar can be an opportunity to steer yourself in a new more positive direction. However our natural inclination is to react with fear and concern. Part of it is our wiring-we fear the unknown. However, there are ways to handle change that make it less stressful.

Change is the one constant in life and by learning to accept and embrace it, we open ourselves to many new and wonderful opportunities.

Consider the following:
• Give yourself some breathing room: Take your time to understand what’s happened and don’t get caught up in a whirlwind of activity.

• Take care of yourself: It’s easy to let yourself eat bad food, skip exercise or even skip meds when you are distracted. While absorbing the changes, take care of yourself by eating healthy foods, socializing, getting enough sleep etc. Pamper yourself with healthy options.

• Accept that you don’t know it all: To learn something new you often have to change your mind. Not something we like to do but if we aren’t willing to change our ideas, we’re not going to grow and change will be more difficult.

• Silence your “reptile brain.” We’re programmed for survival and so we often function like there is a tiger that’s going to pounce on us at any minute. We imagine the worse possible things, which rarely if ever come true and if they do, they aren’t half as bad as we imagine.

• Grow flexibility: Try something new. Get in the habit of trying new things-maybe even once a day. Seek out new perspectives. Really listen to other ideas. Try to argue both sides of a debate. The more flexibility you develop the easier change becomes and the more you can live comfortably with a certain level of uncertainty.

• Review past changes in your life: Sometimes by examining other times in your life when major changes have occurred you’ll find that not only did you weather them just fine, but they often produced some very positive results.

Wednesday, January 3, 2018

Take a Break: Repurpose Holiday Decorations for Year Round Use

 As the holiday decorations come down, and your wondering how you could have amassed so much stuff, a lot of which you no longer use, consider ways that various items can be re purposed.

Balls & Ribbon: If you have the space and containers, store by color so they can be taken out and used year round.

Red, white and blue-patriotic holidays
Red, White-Valentine’s Day
Red, Gold: Chinese New Year
Green, Gold and Purple-Mardi Gras
Green, white-St. Patrick’s Day
Black, yellow, orange, purple: Halloween
Orange, yellow, brown: Thanksgiving
Metallic, silver ornaments can be used year round particularly when mixed with natural materials such as sea grass, twine or wood. Place in a bowl or glass vase.

Balls can be hung with ribbon, piled high in a bowl or other glass container, or attached to a wreath frame. If you have the time and talent, decorate some as gifts. Lots of wonderful ideas

Take Things Apart: I found a bunch of glass candle holders my kids made, which we no longer use. Since they have various items attached with craft glue, I dunked them in hot water and let them sit for a while and now have a nice collection of votives that can be used any time of the year.

Take wreaths apart as the frames can be used through out the year for various projects

Artificial Trees (particularly small ones) can be decorated seasonally throughout the year.

Window candles: In VT, where the temps have hardly climbed into the single digits, no one bothers to remove the outside decorations until Easter, so candles in the window are up year round. It is a welcoming touch that is appreciated in all seasons.

Lights: These can be used year round to create a festive touch to just about any occasion. Wrap them carefully and sort by colors for ease of use.

 Not interested in today’s activity, go to the Take a Break Pinterest and pick out something else.

Saturday, December 30, 2017

Life with Chronic Conditions: Beat the Post Holiday Blues

 The holidays can be a wonderful distraction from all sorts of things, but then the cold gray dawn of January 2 rolls around and the return to normal life can be a rude awakening in more ways than one. They don’t call it the “post holiday blues” for nothing.

Below are ways to wake up on January 2 feeling like it’s an opportunity and something to look forward to:

Forget New Year’s Resolutions and instead think about some things you’d like to do or work on in the coming year. Write them down.

  De clutter/reorganize as part of putting decorations away: As you take down the Christmas tree etc., use this as an opportunity to de clutter and reorganize. Chances are good that you have boxes of holiday stuff, that you only use a small portion of. Now’s the time to get rid of it or see if you can repurpose it. Check out The KonMari Method for Tidying When Affected by a Chronic Condition

• Create a special little nook to enjoy through the winter: You can string some of your holiday lights around a house plant or bring in some branches or even a small tree. If you live where there are birches, these look gorgeous strung with light. For lots of ideas, check out Take a Break: Create a Cozy Retreat

• Reduce connectivity: The constant checking of devices for e-mails, texts, news etc. is extremely wearing. Make a point of scheduling in device free time and being present. If you go out to dinner, ask everyone to leave their phones, laptops and other devices in the car. Recharge your phone in another room of the house where you can’t hear or see it and never in the bedroom. The constant connectivity reduces our cortisol levels and leads to more stress, anxiety and depression.

• Take a different approach to eating and exercise: Okay so you ate all sorts of things you shouldn’t have over the holidays and have spent countless hours in the easy chair watching football and have avoided anything that resembles exercise. Now is the time to “add” instead of being obsessed about eliminating. Add 5 minute walks or stretches after being sedentary for an hour.  Try new ways to add more fruits and veggies to your diet. Be patient as you tamper down from the holiday feeding frenzy. Check out Living with Chronic Disease: Take a Stand to Better Health

• Put some fun things on the calendar for January

• Identify things you can look forward to, such as the Winter Olympics in Feb.

• Learn something new: How much time you want to put into this is up to you, but think about something you’d really like to do well. In my case, I’ve decided I want to work on improving my skills using an Exacto knife. Check out Learn Something New.

• Notice that the days are getting longer: Following December 21, as the sunrise slowly arrives later over those 17 days, we add, at best, a mere minute of daylight to each day at sunset. By January 7, though, we're adding a full two minutes each day to the daylight hours --one at sunrise and one at sunset.

Wednesday, December 27, 2017

Take a Break: Try Gezellig

While “hygge”  is all the rage, the Dutch practice something called “gezellig,” (pronounced ‘heh-sell-ick’) which as one writer described it-“hygge but without the fairy magic.” This all-encompassing word is often translated as “cozy,” but it describes an atmosphere which is a whole bunch of warm fuzzy feelings all wrapped up in eight words – cozy, pleasant, friendly, convivial, quaint, fun, sociable, delightful, togetherness, belonging. At the moment, with temps in the minuses every night, and barely climbing into the single digits, I need all the cozy warmth I can get here in Vermont.

 Interestingly, hygge comes from a Norwegian word meaning “well being,” while gezellig originates from the word for companionship. The difference between the two is that gezellig is more sociable while hygge is more insular. So here are some ways to try gezelligheid:

• Sit in twilight

• Have an open kitchen. Put a stool in there so friends can visit while you cook

• Decorate with flowers

• Make a sign that says Gezelligheid kent geen tijd, which means if you are having a good time it doesn’t matter how late it gets.

• Do something with friends

• Have coffee in a cafe while enjoying a pastry with friends.

• Don’t pick up after your kids. A Dutch website says that since your kids won’t put away their toys without a bribe anyway, you might as well leave them scattered across the floor.

Of course, if you prefer hygge, check out Take a Danish Hygge Break

 Not interested in today’s activity, go to the Take a Break Pinterest and pick out something else.

Saturday, December 23, 2017

Life with Chronic Disease: Holiday meditation

 In the Sept. 28 edition of the Journal of the American Heart Association, research is presented that indicates that meditation may have a role in reducing heart disease. Dozens of studies show that meditation improves an array of conditions connected to heart disease- stress, anxiety, depression, poor sleep quality, and high blood pressure. It may also help people stop smoking.

With so many holidays occurring in and around winter solstice, below are a variety of meditations to try:

                                   Guided Meditation for Holiday Stress & Winter Blues

                                        Solstice Meditation

                                             Christmas Meditation

                                                              Chanukah Meditation

                            Andrew Johnson A Moment of Relaxation