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

Side Effects? What About Rehab?

We all want the best treatment for our illness.  Doctors are supposed to provide you with a thorough outline of the side effects of medications and the possible risks involved with any treatment plan.  We hear a lot about rehab when discussing cardiac health or following a stroke.  Do we need to extend our focus on rehab as part of the treatment process?

I’ve known many women who have developed lymphedema following surgery for breast cancer.  There are physical therapy programs that have been created to help reduce the risk of lymphedema and/or prevent the onset.  How many breast cancer surgeons either know about these programs and/or are making them part of the treatment protocol?

As you go through treatment the impact of any illness could be short term, but often the impact is long term.  If that’s the case your “new normal” may have to include finding new ways of walking through life.  I’ve worked with a textile artist who has severe Rheumatoid Arthritis, as part of her own rehab plan she hired an Occupational Therapist to come into her studio and find ways of mitigating the impact on her body while creating art.  That’s a form of rehab that we often don’t discuss, as an example.

I believe the goal of any treatment needs to be first and foremost to eradicate or mitigate the impact the illness has on our body.  Following the treatment the goal is to maintain your health, but also to maintain the highest quality of life possible.  In order for that goal to be met you may need to consult with a physical therapist or occupational therapist.  Perhaps you need to create order in your home or office, than a professional organizer may be able to help you turn chaos into order.

There are many types of rehab both physical, emotional and spiritual.  Don’t rule any out!  Have any stories about what you did to improve your quality of life following treatment?

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

Long Days and Longer Nights

One of the biggest challenges for those facing an illness either on the patient side or the caregiver side are the feelings of isolation.  It’s difficult when most of your contacts, friends and family, have had no or very little experience with illness.  You look for a sympathetic ear and although they mean well you probably know the blank stares that come your way.

During the day it’s easy to create diversions because there is so much to do.  It’s once the sun goes down and the world gets smaller that the sense of isolation increases.  For the patient and caregiver, trying to support one another isn’t helpful because you’re both fighting the same demon.  You try and remember what it was like prior to the illness and although your activities may not have been any different, like sitting in front the of the television, the implications of your new circumstance ring loud like bells in church steeples.

It’s important that you each set up some type of communication plan.  Care groups form to help ease the experience by cooking meals, driving the patient to an appointment or by picking up the phone and making human contact.  I know that sleep patterns are often not usual so what do you do when it’s the middle of the night, you look out your window and every light on your block is out.  Remember that with technology there is always a part of the world that is awake.  Illness and caregiving is a universal experience.  There are both those who can’t sleep who you can communicate with online and those halfway around the world who are dealing with the day-to-day challenges of facing illness.

Don’t let isolation get the best of you.  Come up with solutions to create a strong community and make sure that you utilize the resources that are provided to you (both of you).  What do you do to tackle those sleepless nights?  Let’s share so that we make the world less of a lonely place.

Posted in Caregiving, In the Know, living with chronic illness, Living with Illness

Do We Need Pharmacists In Our Home?

I was shocked yesterday when I read a report about the increase in deaths due to medication mistakes.  The shocking thing is that these mistakes happened to people like you and me in their homes.  Yesterday the statistics were presented in the Archives in Internal Medicine, Vol 168, #14.

The journal states “Deaths from medication mistakes at home increased from 1132 in 1983 to 12, 426 in 2004.  Adjusted for population growth that amounts to an increase of more than 700 percent during that time”.  I read these statistics and was horrified.  We would all like to thing that we know enough about our medications that we wouldn’t make a fatal mistake.  What about those who are on multiple medications due to illness?

The scary part is that most of the mistakes in medications at home are a result of our ever increasing use of over-the-counter medications.  There are interactions that without a pharmacy degree we can’t predict.  The other cause cited in the journal is the medical communities increased writing of pain medication prescriptions.  We don’t realize that certain medications like pain medication reduce our respiration.   Depending on what other medications we’re ingesting we could be cooking up a recipe for disaster.

Of course it’s not practical to have a pharmacist living in your home.   If you are facing any health challenge be vigilant about what medications you take.  Before taking anything, consult your pharmacist.  It’s better to ask too many questions of your pharmacist, than run the risk of mixing medications and dying prematurely.  Do you really want to run the risk of a fatal mistake?

Posted in after the diagnosis, authenticity, Community, coping with life threatening illness, Having a Voice, Integrity, Living with Illness, Partnerships, Personal Conviction, Relationships

Your Circle of Influence

Ever wonder how many lives you touch?  Many believe that only those of a certain status can influence the life another.  This past Friday, Professor Randy Pausch lost his battle with pancreatic cancer.  His “Last Lecture” became an Internet phenomenon.  Then we had the opportunity to see him on Oprah.  If that weren’t enough his “Last Lecture” became a NY Times Bestseller.  He inspired many people both sick and healthy to live life differently.

If you’re facing a health challenge your circle of influence is greater than you realize.  You may not have a television special done about your life, but is that how we measure the influence or the mark we’ve made on the world.  Every day we have contact with people and it’s our inner nature that leaves an indelible mark on the lives we touch.

So maybe you’re not a TV personality, so let’s focus on who you are.  Think about who you have contact with on a regular basis and what part you play in their life.  It could be as simple as helping a child who has fallen at the playground get back up.  Perhaps you decided after you’ve retired to join the Peace Corps or Americorps or began volunteering in your community.  Perhaps in a year like we’re in now you’ve decided to put on your political hat and become part of a campaign.  You may have chosen to save the lives of animals who without adoption would be euthanized.

It’s not about your degree of fame that determines your level of influence; it’s the conviction in your heart that is the beacon of hope.  If nothing else, when you are facing a health challenge, hope is the key.  When you’ve been diagnosed with an illness you do have a choice about how you will live your life.  You can live life isolated and as a victim or you can see what being a part of a community and striving to make the most of each day can do for your health and the health of others.

You have more influence on the world than you can imagine.  You share your values with those at the grocery store, coffee shop and daycare.  By sharing who you are and living life in partnership with others you rub off on people.  We all want to make sure we leave a mark on the world.  If you don’t listen to Randy Pausch’s lecture or read the book or watch the You Tube of his talk, think about the change you want to see and be in the world.  Don’t wait till you’re better, doing something incredible will improve your health.  It doesn’t have to be a world wide web sensation…keep it simple and the impact will be huge.

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

Overcoming Caregiver Guilt

Welcome to Caregiver Friday!

Guilt is a powerful emotion.  It is probably one of the most difficult emotions to handle because it gets tied in to your self-worth and self-esteem.  When I meet with caregivers I’m always amazed at how self-deprecating they can be.  They feel that they aren’t doing a good enough job.  If they tried harder the patient would get well faster.  They’re being selfish if they take some time for themselves.

The board of directors in your head is very powerful.  In life the gremlins feed on our insecurities.  The truth about caregiving is that every scenario is different.  So, even if you’ve done it before a new person with a new disease is a different situation.  You as a caregiver cannot be responsible for the patient’s wellness.  Treatments don’t always work, but it’s not about caregiving.

Caregiving is the most loving and selfless act any person on the planet can experience.  It takes dedication, organization, patience and compassion.  Don’t get me wrong…frustration, overwhelm and uncertainty also play a big role so caregiving is truly multi-dimensional.

It’s often intentional but patient’s may play on your sympathy.  It’s not uncommon for care providers to be at the beck and call of the patient, even giving the patient a bell in case they need anything.  The truth is that care providers aren’t great at setting boundaries.  I hear over and over that requests become demands, they haven’t heard a thank you in months and the patient doesn’t take into account that the care provider is entitled to a life.

Take back your life.  I’m not saying that caregiving isn’t consuming.  I’m not saying that there aren’t sacrifices to be made.  I’m not saying that patients don’t need help.  I am saying that you can’t give up everything in life to be a care provider.  You can’t be made to feel guilty unless you give the other person permission.  Guilt is often the result of manipulation (no not every patient is manipulative), but the care recipient knows your vulnerabilities.  Think about it, didn’t we know how to get what we wanted from our parents when we were sick as children?

The only difference now is that adults we have a few more tricks up our sleeve.  Setting boundaries is a great way to eliminate guilt.  Giving yourself the benefit of the doubt that you are doing what  you’re capable of doing.  Yes, we can always do better, but caregiving is like everything else, you get on-the-job training.  When you learn as you go of course there will be gaps, but like Oprah says “When you know better, you do better”.

Give yourself credit for assuming this difficult role.  Show yourself the same compassion you offer to the patient.  Keep the lines of communication with the patient open and clear.  Give yourself a break.  We need caregivers to journey with the patient.

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Emotional Health, Having a Voice, living with chronic illness

Getting a “Head” Start

We all know that many who go through chemotherapy will lose their hair.  It’s one of the most if not the most recognizable event especially for women.  For men the story is a bit different.  These days being bald seems to be the “in” thing.  Shaving your head is becoming a fashion statement so one of the ways men may take control of their lives is by shaving their heads before their hair starts to fall out on its own.

Being in control is important.  I’ve been told countless stories of individuals who began losing their hair and then took action.  The problem is that in some treatments hair loss is inevitable.  By determining when to cut off the hair you aren’t surprised and you may even make a ceremony or ritual over the process.

There is a song on India Arie’s third album about hair.  One stanza begins “chemotherapy took away the crowning glory”.  Hair is a big deal not only in our culture but in many cultures.  The Dagara people of West Africa believe that women’s hair is like energy receptors.  Women who naturally receive high energy often cut off their hair so they cut down on their sensitivity to the energy so they don’t become overwhelmed.

What does your hair mean to you?  What will you do to assert some control in the process?

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Emotional Health, living with chronic illness, Spirituality and Health

Mind-Body-Spirit…Who’s In Control?

We all talk about the importance of a mind, body, spirit connection and the impact it has on healing and wellness.  If you read the titles in the bookstores you’ll often see that there is a competition as to which of the three should take the lead.  Don’t you think it’s a cultural thing?  Depending on your belief system, values and upbringing the order of importance may change.

Getting information is crucial but intuition plays a big part in decisions regarding healthcare, treatment and wellness.  Where am I going with all this?  I believe that the brain informs and then the heart makes the decision.  We’d like to think we’re totally rational beings, but think about most of your recent conversations and how emotional did they get, either in the workplace or your personal life?

Our heart, our intuition, our emotions drive the train.  They color how we interpret the information we gather and that allows us to be empowered.  Going against the grain, rubbing the wrong way phrases we hear when we are out of alignment with our heart.

How do you make decisions?  What’s your process?  Do you listen to your heart and how does it influence your decision making process?   Share your stories and let’s talk!

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

Preparing for Surgery

Many diagnosed with an illness will need to undergo surgery.  It’s a scary ordeal and there is plenty to be anxious about.  The goal is to prepare yourself to minimize both the trauma and maximize the healing.  It’s important to understand why the body is traumatized in order to overcome the resistance.

When we undergo surgery the body believes that an intruder is trying to get in to our bodies.  The body doesn’t understand that surgery is there to help not hurt.  From the moment we enter the hospital our bodies are tense and that makes surgery more difficult, doctors are used to this resistance, but let’s try and make their jobs a bit easier.

It helps if you can begin a regimen or visualization, hypnosis, or meditation as soon as you learn that surgery is in your future.  You want to walk through from beginning to end what’s going to happen, so ask your doctor.  You want to acquaint yourself with the process so the body isn’t surprised.  In addition, you need to begin an inner dialogue that informs the body that the surgery is necessary and will hopefully lead to increased health, wellness, and quality of life.

The biggest part of the preparation is letting the body know not to fight the surgery.  When the body is tense and tries to defend against the scalpel the surgeon needs to work harder.  Cutting through tough body tissue is more difficult than cutting through relaxed body tissue.  Let your body give in to the surgical process.  When this happens the benefits are enormous.  There is less bleeding during the surgery and the amount of pain medication required following surgery is decreased.

Give yourself every benefit possible when preparing for surgery so that you get the maximum benefit with minimal challenge.  Do you have things you’ve tried preparing for surgery.  Let the rest of us in on your preparation, you’ll be doing a huge service to all of us.

Posted in care for the caregiver, Caregiving, coping with chronic illness, coping with life threatening illness, Living with Illness, Relationships

Caregivers Sacrifice, But Shouldn’t Be Sacrificed

Welcome to Caregiver Friday!

This week I’ve been talking to friends, family and colleagues about their caregiving experiences. Over the past twenty two years I’ve seen amazing caregivers who go through each day offering compassion and easing the suffering of those they care for on a daily basis. Some caregiving is temporary but more and more long-term caregiving is the norm.

Caregivers, as you know from first hand experience, are part of a team of providers that includes the rest of the health team. The major difference is that family/friend caregivers go home with the patient and the other member of the team get to keep a safe distance. Being up close and personal with the patient requires patience and compassion. It requires the ability to think rationally, especially in times of chaos or crisis.

What I notice is that caregivers often re-arrange their lives to be able to keep running on all cylinders. They give up time with their own friends, deal with decreased financial resources and are asked/required to put their own needs on hold. These are huge sacrifices and are often costly both in physical and emotional health.

There has to be a way to create balance for the caregiver. There are organizations like In Home Support Services (IHSS), but often they have income requirements. There are agencies that provide respite care but it’s not always covered by insurance, until someone is in hospice. You can hire someone out-of-pocket depending on your financial resources or you can get volunteers to help through community nonprofit agencies.

Healthcare providers have to get better at addressing the needs of the patient and the caregiver. We can’t make caregivers sacrifice to the extent that they are left physically, emotionally and spiritually malnourished (literally and figuratively). In order for caregivers to continue providing the needed love, support, and compassion, there has to be some way to allow them to maintain some degree of normality. If we expect caregivers to be sacrificed because illness has created a new normal, we’ll end up with two patients and no caregivers…is that really what we want?

If you have tips to share about how to maintain emotional and spiritual stamina while caregiving please share your story so we can keep caregivers healthy and at peace!

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

Disappointing Looks

Having a chronic or life-threatening illness is difficult enough without feeling like you’re responsible for the world.  It’s amazing how many people will get annoyed because health gets in the way of “having fun”.  It doesn’t seem fair and yet I hear about it all the time.

I was talking to a friend of mine that I’ve known since college.  Over the past few years she’s been having some health issues and the doctors are still looking for a definitive diagnosis, but they have some preliminary findings.  What they don’t have to diagnosis is the experience of the illness my friend is having on a regular basis.

She shared with me that she’s hesitant to make plans with people because her health, at this time, is a bit tenuous.  It’s the next thing she said that caught me off guard.  She said that she’d rather not make plans than worry about people rolling their eyes at her because she has to cancel plans.  Is that ridiculous?  Can people be that self-absorbed that the intrusion of illness on your friend’s quality of life is looked at as an inconvenience?

If people have been friends for a while then it shouldn’t be a surprise that limitations may arise and compassion should be the only response.  We’re intelligent beings, couldn’t you alter the plans to something that isn’t so energy draining?

I hope the world would be a bit more forgiving, but maybe I’m deceiving myself.  Could it be that we live in such an ego-centric world that another person’s suffering shouldn’t interfere with our fun?  Is that practical?  Is it even possible?  Do you have any stories like this in your life?  If so please share so that people won’t feel so isolated in this issue.