Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Doctor's Visits, Emotional Health, Empowerment, Healthcare, living with chronic illness, Living with Illness, newly diagnosed illness

Truth Be Told

We teach children to tell the truth.  We take an oath to tell the truth when we get on the witness stand.  When we watch Superman, we hear “Truth, Justice, and the American Way”.  We’re caught up in the premise of truth and yet when we go to the doctor, we often hold back telling the truth.

Let me be clear, omission of facts (data) is not living your truth.  Minimization dilutes truth!  Trying to be or act the way our provider expects us to be/do diminishes our truth.

This is what I’ve learned after being a patient advocate for over twenty years.  If you don’t tell the truth, the raw, nitty gritty details, your healthcare provider is working with insufficient data.  If you don’t give your provider all the information, it’s like leaving ingredients out of a recipe…what a disaster.

Truth is a two-way street. If you aren’t honest with yourself, how can you be honest with your provider?  If you’re having a flare, don’t just believe it’s a passing thing and doesn’t need attention.  If you’re in pain, don’t dumb down the number on the 1-10 scale so the provider thinks you’re brave and can handle the pain with minimal intervention.  The opioid crisis is predicated on a lack of truth, making providers hesitant to prescribe narcotics for pain.

Truth is a funny thing because many believe it works on a sliding scale.  I want you to ponder the idea of truth on a sliding scale when it comes to your health and well-being.  I’ll give you an example.

One of the times I went to therapy, I was seeing a Jungian analyst.  He was a highly competent psychologist and I liked him a lot.  I trusted him.  After eighteen months of seeing him I walked into my session and initiated termination because I felt “healed”.  He was persistent in asking me if I truly believed what I was saying.  I’m stubborn!  I left therapy, telling myself I was healed.  Nine months later I was driving and pulled into a gas station to use a pay phone (I’m dating myself) and called him.  He answered, the first words out of my mouth were, “I need an appointment, I’m crazy” (not in the clinical sense, in my personal experience of how my life was going.)

I learned a lot about truth telling from that experience.  I learned that telling the truth didn’t diminish my worthiness or my life in my therapist’s opinion.  By telling my truth, I healed more quickly.  Best outcome was I felt lighter walking in my own shoes.

I encourage the patients I advocate for to be honest with their providers.  There’s a caveat here, sometimes patients feel they are telling the truth because they don’t remember/recall the complaints they’ve had between appointments.  It’s interesting that we believe an episode or experience isn’t important to tell the provider.  Every aspect of your health experience is important to the provider.

What’s the first truth you’ll tell?

Posted in art and healing, creativity and health

Lucille Ball, Desi Arnaz and Babaloo

Welcome to Art and Healing Wednesday!!

One of the great advantages to living in different parts of the country is that you never know what small treasures you’ll come across.  One day at work I heard some people talking about the “I Love Lucy” museum in Jamestown.  Why Jamestown you ask?  Because Jamestown is where Lucille Ball was born and she made reference to it quite frequently on the show.

I took a road trip yesterday to see the museum and although quite small, it’s in a store front off Main Street, it’s packed with memorabilia that will tickle your funny bone.  The best part of this journey is that if you ever watched the television show (and if you never saw it you must be from another planet) it takes you right back to those memories of a simpler time in your life, most likely prior to your diagnosis.

Comedy is an underrated art form.  People believe that comedy, like photography, is something anyone can do and they try, but often fail.  Comedy is not just a joke it’s truly an art form.  It requires wit, understanding of the times we’re in, and most of all a great delivery.  I’m a great story-teller, but not a great joke teller; believe me there’s quite a difference.  We don’t often realize how many writers are on a comedy show.  Ever watch the Emmy Awards?  During the award for writing, the nominees are often teams of up to 10 or 12 people…that’s a lot of exchange in the writing room to make the work funny.

So what does this have to do with art and healing?  Well if we look at comedy as an art form, then we next have to look at the impact comedy and thus laughter have on the body.  Normal Cousins author of “Anatomy of an Illness” describes how he dealt with his excruciating pain issues.  He checked out of the hospital and into a hotel.  Cousins had his wife go rent Marx Brothers movies for him to watch.  He found that 20 minutes of a good belly laugh gave  him 2 hours of pain-free sleep (that’s a great return on your investment).

I know that while in the Lucy-Desi Museum ( I laughed and not just a chuckle, but to the point that tears were rolling down my face.  To see the actual sets, and watch the video clips made me think of the episode in the chocolate factory or stomping the grapes, or Vitameatavegamin.  They even have the set-up and a video camera with the script on a prompter so you can do the commercial and have your friends watch you on the monitor. 

The symbol for theater of the two faces representing comedy and tragedy are together for a reason.  We often can’t have one without the other just as we can’t have darkness without light.  Go rent some of your favorite comedies and sink into your favorite chair and allow the comedy to take you away on an adventure to a place of freedom.  The laughter will be a shock to your body, mind, and spirit if you’ve been too serious for too long (often happens after a diagnosis of a health challenge).  Let the laughter sweep over you and allow the body to utilize the hormones released to promote health and healing.

Do you have a favorite “I Love Lucy” episode?  I’d love to hear what made you laugh the hardest…just leave a comment and let’s celebrate Lucy and Desi!

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

When the Rules of the Game Change

I’ve been involved in the lives of those with chronic and other life-altering illness for over twenty years.  During that time I’ve become a pretty good observer of people as they go through the illness process. 

Yesterday I was watching one of my co-workers who within the last year was diagnosed with cancer.  The cancer is in his spine and the doctor’s have told him they can treat it like a chronic illness, but they won’t be able to put the cancer into remission.  When I was watching him at work I asked him if he was okay because his stride was different, and he had a slight edge in his face.   I asked him if he was in pain and the answer was a definite, YES!!

We began discussing pain medications and patches and they don’t seem to be taking enough of the pain away.  He’s in a job where he’s on his feet 10+ hours a day and is walking back and forth across a 60,000 sq ft. store.  Finally he turns to me and says, “Maybe I should just go out on permanent disability”. 

I stopped and asked what was holding him back and there wasn’t an answer.  I knew the answer and I bet you know the answer as well (as did he).  If he goes out on disability the rules of the game change.  The relationship he has with his body and the cancer change because the committee in his head is saying that the cancer is winning.

I’ve discussed many times that not everyone will live till their 120, nor will everyone get well, although they may get better.  Illness progression does mean that adaptability has to be your middle name.  However, if the rules of the game change learn the rules and play the game to the best of your ability.

My immediate thought was for him to go out on disability, ease the tension in his body, mind, and spirit and hopefully that would allow the pain medication to work better.  If that weren’t the case he could ask the doctors to increase the pain medication levels; the side effects may increase, but the pain would be eased.  The hope is that somehow he can increase his quality of life.  I know he loves his work, but it may be time to love himself more.  It may be time to focus on relationships and hobbies, and enjoy whatever days he has without pain.

The game will change, we just have to learn to live in the gray zone and figure out a way to learn the new game quickly and become a master at the new game.

Posted in End-Of-Life Care

The Truth is Not Everyone Survives

The saying goes, “The only thing you have to do is pay taxes, and die”.  I guess that’s a reality…I wish it were more.  Unfortunately, the truth is that not everyone who is diagnosed with a chronic or other life-altering illness will live to cherish their golden years.  It can be for various reasons; the diagnosis was discovered to late, your disease doesn’t respond to treatment, or you experience the domino effect where you don’t die from the illness you were diagnosed with but from a complication related to it.

Our culture doesn’t discuss death.  I remember in my junior year in high school our health class was on “death and dying”.  I’m not sure why they were talking t a bunch of teenagers about death and dying when they believe their invincible.  For most of us in the late 20th and 21st century, don’t experience the death of an adult until we’re older.  Our first experience with death is a pet and that can be very traumatic.  However, it certainly doesn’t have the long-term effects of a loved one dying.

I want to talk about end-of-life care because November is National Hospice Month.  Hospice started in England as a way to provide care for those in the end-stage of life.  The requirement for hospice is that your doctor will certify that you have less than six months to live.  Once you enter hospice they stop treatment in hopes of healing the illness.  Medications that are treatment specific are given if they alleviate pain and suffering, but otherwise treatment is stopped. 

Hospice offers support, comfort, and pain management to the individual and support and education to the family.  There are both in-patient hospices and home hospice depending on where you live.  Because we’re so afraid of the dying process and hold on to the glimmer of possibility that we’ll miraculously get well, hospice care if under utilized.  In England the average length of time a person is enrolled in hospice is 17 days; in the United States the average is 7 days.

Have you made your wishes known to others about your end-of-life care?  Have those in your inner circle been willing to hear you talk about death and dying?  Are you willing to let go of what might be the illusion that you’ll walk away from your illness alive and well?  I know that many believe that hospice is the message of defeat.  Actually I believe hospice is the message of triumph.  It puts you back in control of your own life.  It gives you options so that you can be cared for with dignity and compassion.  It gives you the freedom to make conscious choice about how you’ll spend the days you have alive.

There are some amazing stories in hospice about the six month rule.  I was facilitating a support group for cancer patients and a woman in the group in her late 70’s early 80’s had a rare sarcoma.  She’d been through treatment for over a year and then made the decision to go on hospice.  She lived six months and they extended her hospice benefits.  One day she came to group and announced that she had graduated out of hospice.  In order for her to retain her hospice benefits on Medicare in the months to come; she’d have to leave the hospice program until she was “ready” for it.  Can you imagine graduating out of hospice?

During the month of November when we celebrate National Hospice Month; it may be a good time to look at what hospice has to offer.  Know your options.  Give yourself the gift of knowledge and understanding about hospice.  Allow yourself to consider the possibility that if you’re considering stopping treatment, what options will provide you with the highest quality-of-life with the time you have remaining.

I wish you health and healing, but I also want you to recognize the reality of life…that is no one gets out alive.  Find out how through hospice you can maintain control of your care with a little help from those who understand end-of-life care.

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

Ditch Digging is Not Part of Health and Healing

What do you focus on when it comes to your health?  If you’ve been diagnosed with a chronic or life-threatening illness you probably ask, “What else can go wrong?”  We’re in a culture that is constantly waiting for the other shoe to drop and believe me if you give it the opportunity it will fall, often and hard.  Every negative thought is the equivalent of picking up the shovel and scooping out a shovel full of dirt.  What happens eventually?  You find yourself at the bottom of a very deep hole.  Is that where you think you’ll find health and healing?

The only ditch digging you should be doing is in the garden.  If you think of planting in the garden the ditch gets prepared to receive the new plants…the new life.  It doesn’t work that way in life.  Most people dig a ditch and then when they’re in too deep they wallow in the reality that they can’t get out.  If you are going to dig the emotional and/or spiritual ditch then I implore you to have an escape route in mind before the shovel touches your soul.  I mean have someone who can offer you a lifeline or an escape ladder from the perils of the ditch. 

Your safeguard may be your physician, a therapist, a coach, a spiritual director or yes even your nursery professional if gardening is your preferred spiritual practice.  It’s imperative that you remain engaged in your life and the people who mean the most to you.  Remember that laughter isn’t just fun but therapeutic.  Norman Cousins watched the Three Stooges and for every 20 minutes of a good belly laugh, he got 2 hours of pain relief.

Leave the ditch digging out in the yard where it belongs.  If you feel the descent beginning have a plan in place to keep your head above ground.  Don’t fall so far down that the possibility of being saved is remote.  Giving yourself the gift of planning will open your heart and your mind to the possibilities that others will deliver to your doorstep.  Listen for how other people have overcome similar challenges, go to a support group, read blogs by people who are in similar circumstances.  You have to do it yourself, but you don’t have to it alone.

How will you keep yourself out of the ditch today?  What do you do to keep your head above ground?  How do you cultivate opportunites and then reap the alternatives provided by others?

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Having a Voice, living with chronic illness, Living with Illness, Partnerships, Personal Conviction

Pain and Income…Are they related?

I heard about a study that discussed the amount of pain people experience and believe it or not it’s correlated to income.  I guess it shouldn’t be a surprise since pain management is often related to having good medical coverage, but does that make sense to you?

The study stated that people who make $30,000 per year were in three times greater pain than those earning $100,000 a year.  The degree of pain is directly proportional to income.  I can’t believe that the medical community would allow this to happen.  Having worked in a community health center for years I know there are funds available if someone can’t afford medication and aren’t covered by Medicaid or other insurance.  Clinics have funds for uninsured patients and often have funds to pay for medication with pharmacies in their neighborhood.

Pain is one of the key factors that make facing a life-altering diagnosis so difficult.  It effects every aspect of our daily lives and not having it under control is often debilitating.  This is why we need to look for ways to increase health insurance coverage in the country.

I know that some providers may say that they are afraid of prescribing pain medications because too often patients at all income levels are drug seeking.  Unfortunately, with wealthier patients the pain is taken more seriously.  We all have to break the stereotypes we have about how income level, race, education level have on our perceptions of people when they tell us they’re in pain.  It’s no laughing matter.