Posted in Caregiving

Nothing Beats the Real Thing!

Welcome to Caregiver Friday!!

This week Apple came out with the iPad, another mobile device for all to marvel.  There are more smart phones and social networks than one can count and just as you learn to use your phone they add a bunch of buttons and services.

We’ve become obsessed with social networks like Facebook and MySpace but they are off in a distant land.  There is no substitution for the real thing; in-person contact with those you know and love.  I know in this age of technology that may seem far-fetched, but personal human contact has as many physical health benefits as it does emotional and spiritual health benefits.

We all know that caregiving is tiresome and time-consuming, but if you think communicating with the world in 140 character snippets is communicating then you need to shift your perspective.  These types of social networks are great for getting the word out quickly if you need something or there’s an emergency, but how are you getting your needs met?  How can someone posting on your wall give you the emotional connection you need when the well has run or is running dry?

The sad thing is in these instances you think you’re connecting but it’s not real.  You think you’re getting support but how does a 140 character response compare to a hug from someone who is looking out for your well-being?

Obviously there are constraints with in-person relationships.  We’ve become a very mobile society so you may not live near those you go to for support.  This is where technology like Skype is great because you can see the person in real-time while talking to them.  It’s not simply a few words on the screen.  A few short words may work for Hallmark, but in this day and age when so many of us are yearning for connection, a live person works best.

How will you commit to connecting with friends and family in person?  You don’t even have to go anywhere, invite those you want to spend time with to your home.  Personally, you probably need a change of scenery so going to see them may do you a world of good, but the reverse works too.  This is one of those times when I’ll harp on attending a support group.  Be in the room with others who share your path and you’ll feel supported.  Who knows you will probably get a hug after the meeting and a coffee date on your calendar.

Don’t succumb to technology as a replace for connection.  Think of technology as an addition to technology and you’ll feel more supported and connected in your own life!

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Does the Smithosonian Know About You?

The Smithsonian is one of the most celebrated and prestigious museums in the world.  It archives history of the United States like no other museum could ever accomplish.  Those who are in the Smithsonian, represented in some way for their accomplishments, achievements, and contributions have a special place in our history. 

There’s a bumper sticker/refrigerator magnet etc. that states, “Well behaved women seldom make history”.  Think about that for a moment and then see how it applies to your life, compare and contrast the figures you admire most in the Smithsonian.  How does your life measure up?  If we were putting together a museum just about you what would be the highlights?

When diagnosed with a chronic or life-threatening illness merely trying isn’t good enough.  Until your mind, body, and spirit are on the same page with a common goal you’re probably just going through the motions.  Your life is too precious to simply just go through the motions.  A quote from the show The West Wing states, “You think there’s a room in the Smithsonian for guys who never tried?”

There’s nothing about overcoming an illness that’s easy.  For many the simple act of getting out of bed in the morning could be the biggest challenge of the day, but trying is a must.  Whether the reason you can’t get out of bed is physical or emotional; the act of trying, desiring, even willing if necessary goes a long way.

I’m not suggesting that you have to fly around the world looking for gurus and healers who will perform miracles.  I am suggesting that you take your thoughts and actions one step further than usual.  It’s too easy when facing a health challenge to get caught in the rut of the same.  Life becomes a routing when it should be a continual mystery.

How will you make history for yourself?  What can you do today, just one thing that will move you one step deeper in healing your mind, body, and/or spirit?  Who do you need to call to join you in this mission?  Don’t be well-behaved, be outrageous!

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

I Swear to Tell the Truth, The Whole Truth…

Every courtroom drama shows a witness getting on the witness stand and swearing to tell the truth.  Even though the person swears to tell the truth there is no guarantee other than threat of a perjury charge.  Isn’t it interesting that when we go to the doctor we’re not sworn in to tell the truth?  We’re allowed to fabricate whatever story we want in the doctor’s office.  We’re free to concoct a story about our symptoms, our habits, our reactions in hopes of not seeming as sick or wanting to not “disappoint” the doctor.

Let’s get to the truth.  The truth is that the only person we hurt when we don’t tell the truth is ourselves.  Not telling the truth doesn’t hurt the doctor.  It does make the physician less effective and potentially negligent, but not as a result of their skills or intentions.  Maybe you believe that small lies don’t count, but they could have a huge impact on your treatment plan.

One example is those who are on anti-depressants and are asked about their alcohol consumption.  People who are embarrassed by their alcohol intake when they were instructed not to drink or to greatly reduce their intake may not be truthful.  Is it any wonder that they also report not feeling any better being on the medication?

How about those of you with high cholesterol, putting you at risk for cardio-vascular incidents and the you’ve been told to change your diet.  Let me tell you increasing your vegetable intake is important, but putting butter or cheese on it negates the good; but you still get to the tell the doctor that you’re eating more vegetables.

How about the person who wants to believe they’re getting better and minimizes their symptoms to the doctor.  Is it worth suffering needlessly just to look good.  That only works in the old Billy Crystal comedy sketch where he used to say, “It’s better to look good than to feel good”.  If you subscribe to that philosophy you’re doing you and your body a disservice.  There are lots of ways for providers to aid you with reducing symptoms, but they need to know about them.  That requires you to be honest with yourself and the provider.

At the end of the day the doctor doesn’t have to go home with you and look in the mirror knowing that the information presented wasn’t true.  This is about your integrity and why would you want to compromise that?

You may think you’re putting one over on the doctor, but the truth is that you’re only deceiving yourself.  The body will expose you through lab tests, exams, and escalation of symptoms or disease progression.  Head the troubles off at the pass and partner with your doctor so you get the best care possible.  It’s what you owe yourself and what you deserve!

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Emotional Health, living with chronic illness, Living with Illness

What Could Be Braver Than Crying?

Ever watch babies cry; they do it with such abandon for what others think or care about them as they engage in this behavior.  Why do you think that’s so?  Probably because they have no other means of communicating what they’re thinking or what they need.  It’s their form of language at least for the first few months and it is very effective.  If nothing else it gets everyone’s attention.

When does that change?  Why is it that crying becomes a bad, almost taboo activity?  Does having spoken language really change the primal nature of crying?  Isn’t crying still an effective means of communication?  If nothing else doesn’t it serve as a form of ultimate self-expression?

Keeping that in mind then it shows us that crying is brave because it goes against the norm.  As adults we’re supposed to be tougher than a baby.  We’re allegedly able to communicate more directly through our vocabulary.  Truth be told, I can’t think of anything more honest, open, and brave than crying.  The purity of the emotion makes it a freeing experience for body, mind, and spirit.

I can’t think of a person who diagnosed with a chronic or life-threatening illness who hasn’t wanted to cry after the news.  Maybe you are one of those people who believe that when life gives you lemons you should make lemonade, but when shock and dismay hit doesn’t crying seem like a likely candidate for self-expression?

When we’re vulnerable we’re open to receiving love and support from others.  It gives others the opening to approach us and lend their words and actions of comfort.  Even when you cry in private, there is an openness about you that emerges and others can feel.  There’s a receptivity to seeking alternatives to promote health and healing.  You’re more inclined to create a wellness team to support you through the good and the bad times.  It’s truly a win-win situation; that would make Stephen Covey proud!

If you feel it necessary, have a good cry.  If you’re already a weeper then good for you, you have one more tool in your arsenal to promote wellness.  If you’re not in that place you may need something to prime the pump, but eventually it will come naturally just like water from the well.

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Internal Tug-O-War

The poem by Robert Frost speaks about “The Road Not Taken”.  The poem starts, “Two roads diverged in a yellow wood, and sorry I could not travel both…”  It’s common to feel that way in your life, two roads before you and you can only choose one.  How do you know which one will be in your best interest or is the correct on that leads to health and healing?

Last night I was at a lecture and woman speaking is a Shaman.  She apprenticed for over 7 years with a Shaman and she delivered a very powerful message.  She shared that in this world we have one of two choices to make about lives; you can either choose to be a victim or a creator.  I heard her words and I felt as if I had one of those lightbulb moments.

This world is full of those choosing victimhood.  As a psychotherapist it was a common issue for clients, but if you watch the news, read the paper, or venture out in public it shows up in everywhere.  There are certainly life circumstances that will direct you in one direction or another, but isn’t the eventual goal for everyone to become a creator?

As an artist it’s not uncommon for me, every few years, to lay out my work in chronological order to see its progression.  It’s an easy process because the art is something tangible and can be displayed.  How can we do that with our lives?

I took a workshop with Angeles Arrien, author of The Nine Muses.  We were discussing creativity and one of the exercises was to do an autobiography of our creative lives by decade.  Most of us had lived past the age of 30 so we actually had a few decades to explore.  Couldn’t you use this method for any and all areas of your life?  What would you like to see the progression of in your life?  Think about a quality, characteristic, or action you take and see how it has transformed over time.

This is a great practice for those who are facing a health challenge because you can see the personal transformation that often takes place after receiving a diagnosis.  It wasn’t the chosen road, but the detour so how have your ideals, ideas, beliefs and values changed over time.  This is part of the healing process; it’s part of your healing journey!

Posted in Caregiving

Stop Using a Soup Can and String

Welcome to Caregiver Friday!!

Years ago the phone company had a campaign that said, “Reach out and touch someone.”  They were promoting using the telephone to speak with loved ones; keeping the lines of communication open.  Now Progresso Soup has commercials where people use a soup can and string as their telephone to signify the homemade taste of their soup reaching back to days gone by.  The image of the soup can and string is comedic these days, but the issue about good communication remains important, especially in between you, the caregiver/wellness partner, and the patient.

Western industrialized nations have been studied to understand how people in these cultures communicate.  What the studies show is that there is little time between one person speaking and the next jumping in to the conversation.  Our rate of speaking over others is astounding, and we’ve come to believe, as a culture, that when a person pauses they are done speaking.

On the opposite end of the continnum, other cultures seem to expand their conversations with a breath and space.  They are more inclined to allow for the complete thought to emerge before jumping in to state their own point of view.  It all seems more civilized, don’t you think?

Over the past few years as I’ve attended classes I’ve noticed something very interesting about communication patterns.  Overwhelmingly, during our discussions when someone wants to share they often looked to the person who was just speaking to ask if they were done…or had they completed their thought.  The opportunity to allow for full expression is crucial in any conversation.

How’s the communication pattern between you and the person you’re caring for?  Do you feel heard?  Are you given the opportunity to fully express yourself?  Do you feel that your input is welcomed or even sought after?  These are important components to retaining the capacity to care for another human being.

What can you do to increase the level of communication between yourself and the patient?  How can you stand your ground a bit clearer so that your entire thought or idea is shared with the patient?  How can you negotiate for clearer communication, especially about crucial issues like end-of-life care or treatment options?

Communication isn’t merely words; it’s the premise of the relationship.  It provides the foundation for the partnership as you moved toward health and healing.  It’s too important to be left to chance or a soup can and string.  What have you done to promote good communication?  Please share your tips because it’s so important.

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

What Kind of Plan?

Many people believe that there is an order to our lives and the Universe.  If that were true then there Chaos Theory would never have been discovered.  One must consider what Chaos Theory actually reveals, the idea that within chaos there is order.  Can you think of anything more fitting than chaos theory to describe being diagnosed with a chronic or life-threatening illness?

We’re always asking the questions that start with “why”.  Why did this happen to me?  Why didn’t I see the signs?  Why can’t I heal?  Why, why, why, why, why.  It’s frustrating because no one can possibly believe or ask themselves, “What kind of plan could this possibly be?”  If that’s the question then the answer lives in the idea of random occurrences.  My experience with clients over the past 20+ years is that people don’t like random occurrences, believing there’s a plan is more comforting, even if it’s unrealistic.

So we sit and wonder about the “plan”.  The real question is to look forward and ask “what next?”  Since no one plans for illness, once diagnosed maybe the mandate is to plan for health, healing and wellness.  Did you ever plan for that prior to the diagnosis?  Did it not occur to you to plan for that or did you live by the concept of, “If it’s not broken, don’t fix it.”  I know I lived like that for a long time and I can also tell you it didn’t always work out as I planned.

I would like to believe that there is a divine plan that includes my health.  However, being diagnosed with an auto-immune disease before the age of 13 I guess that plan was shot to hell.  My life has been around planning for wellness.  I’ve looked for doctors who were on the cutting edge of treatments, kept up on the latest research and data, and believed in allowing me to participate in planning for my health and wellness. It’s not something I take lightly and I hope you can begin to create your own plan for health and healing.

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Identity Theft

You get a diagnosis and instantly you feel like you’ve been the victim of identity theft.  You’re no longer an individual, but a constituent of the disease.  Your ever evolving personal profile is compromised as if a hacker entered your personal system and is not at the controls.  It’s disconcerting, but it happens every day and when it does how do you deal with the theft? 

Many go into hiding following their diagnosis.  It’s as if you’ve suddenly been put on the FBI’s 10 most wanted list and everywhere you go you believe all eyes are upon you.  In addition, your family and friends believe you’re not the spokesperson for the illness giving you this new level of responsibility. 

How did all of this happen?  All you did was go to the doctor, take a few tests, and receive news about the diagnosis from the doctor; how did it turn into a deconstruction and reconstruction of a life?  Unfortunately our culture is all about labels.  Everyone feels more comfortable when they can pigeon hole you so that it eases their own anxiety.  The difficult part when facing a health challenge, unlike with your credit, is that you can’t lock out a diagnosis.  You can certainly take measures to ward off the possibility of illness, but there is no definitive method for extricating illness from the human body…yet!

What is your identity?  Are you the same person you were the moment before the diagnosis as the moment after the diagnosis?  Is your faith the same?  Is your humor the same?  Is your taste in literature the same?  This is the time when affirming your identity is important because it reinforces within you and to the world that the health challenge isn’t what defines you.  It doesn’t have you, it is a part of you that you have a voice in handling.

Don’t give your diagnosis power over your life.  Fortify your life by reinforcing what you most love about your life.  Dig deeper roots in your passions, your relationships, and human connection.  Take a stand on issues that are important to you because your voice matters…it is part of your identity.  Don’t give the thief free reign over your life; your lord of the manner.  It’s time to show the identity thief who’s boss!

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Containing Complaining

I’m a textile artist and I belong to an art guild for textile artists.  Last night was our monthly meeting and I got to see my friend and mentor.  One of the amazing things about her is that she has had debilitating rheumatoid arthritis for years among other health issues and she continues to create art, curate shows, and teach those who want to learn about his fascinating art medium.

While sitting together another friend came over whose husband died  about four months ago.  It was great seeing her and she talked about needing to stay engaged because grief can consume you and create intense isolation.  She drove over 2 hours to attend this meeting because she needed to be with her tribe.

As the three of us sat there talking about the misfortunes of life, there was a comment about complaining and its impact on others.  My mentor turned to me and said, “I believe I do a good job of containing the complaining.”  Aside from the alliterative nature of the phrase, she made a good point.  What’s the benefit of complaining.  If nothing else we know it’s a sure way of clearing a room.  There’s just so much complaining any person can stand.

The flip side of complaining is finding solutions.  If you’re not looking for solutions then you become part of the problem and that too is a turn-off.  Containing complaining isn’t about cutting off your feelings; it’s about channeling your challenges and obstacles into opportunities for compromise.  It’s the place where you enter the phase of acceptance about having a chronic or life-threatening illness and understand that you still have choices.

Don’t get me wrong, I believe everyone has the right to complain about the crappy hand dealt to you, but if it’s the lens through which you see the world then everything is skewed.  You’re opportunities for health and healing diminish and that starts the downward spiral.

What do you do to contain the complaining?  I hope you’ll take the role of teacher and share your experiences with us!

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Gravitational Pull

It’s Monday morning and the week starts again.  That’s a good thing.  There are things you may have dreaded in the past that take on a new experience as you view the world through a different set of glasses.  Trust me, I’m not saying that Monday morning doesn’t suck, but it does so in a new way, one without too much resentment.

Why do we need gravity?  Gravity is what keeps our feet firmly planted on this earth.  It’s a force that has such power that it can keep everything on earth on the ground.  If that weren’t the case we’d all be floating around.  Another aspect of gravity is its ability to pull or keep things in orbit.  This is important because this is how the Earth and the other planets stay in their orbital trajectory.

So what are your drawn to?  Where is there an attraction that you want to explore further?  Since we’re looking at this from the perspective of health and healing, what peaks your interest to increase your level of wellness? 

When I lived in California, I had a great doctor.  He would talk to me like a real person, and make suggestions about the course of my medical treatment.  There was one time when I was having a prolonged flare and was miserable.  He called my home on the weekend to tell me that he had put a book on hold for me at the East West Bookstore in Palo Alto on Ayurvedic Medicine.  He informed me that if I wanted, we could explore this avenue to get my health back on track.  This was an allopathic physician giving me options.  That increased his pull with me!!

I’ve had prolonged periods of acupuncture.  It came as a recommendation from a friend and once again I was looking for ways to increase my level of wellness so I went to the one of the most noted acupuncturists in San Francisco.  The treatment was great and worked great, even if I had to drink those herbs that tasted like sewage.  I was drawn to this treatment strategy after doing a lot of reading, discussions with friends, and great recommendations for a terrific practitioner.

I’m drawn to certain complementary medical treatments because I believe that the body needs holistic treatment.  Simply taking a pill doesn’t work for me because my wellness is dependent on my emotional and spiritual wellness.  It’s like a three-legged stool, I need all three to stay be balanced.

We’re all drawn to different things.  I have friends who have adopted the life of a Raw Food Vegan.  This is for many reasons that encompass their physical, emotional, and spiritual well-being.  Others have begun intense study with spiritual teachers whose message resonates loud and clear to their soul that it improves all areas of their lives.

Be conscious of what pulls you and what you’re attracted to.  The piece of the puzzle you may need for health and healing is one G force away!