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

After Christmas Sales

When I was in college I had friends who went to college in the Boston area and would discuss the happenings at Filene’s Basement.  What happenings?  The pulling, tugging, and screaming to get the item they wanted at a rock bottom price.  Now we’re a couple of days past Christmas and all the stores are having these amazing sales hoping to rescue themselves from a less than stellar retail season.  They use those bargain busters to get you in the door hoping you’ll spend more than just that one item.

So how does this apply to your life as you face a chronic or life-threatening illness?  We all want the best deal, the best treatment, the best strategies for health and healing, but waiting for the cheap or the easy may not be in your best interest.  Health shouldn’t be something that goes to the company with the best ad or the biggest promise.  It’s like the retailers, they are selling an item and pharmaceutical companies are marketing to you just as a toy company markets to a child.

The pharmaceutical companies are banking on the idea that you’ll walk into your doctor’s office and demand a particular job.  They are counting on you being an empowered patient and asking the doctor for what you want.  The question is are you really qualified to make that decision?  What if the ads and marketing campaigns engaged you to begin a dialogue with your provider.  That’s how you become an empowered patient.  If you’re simply selecting your treatment protocol based on ads in magazines you’re only seeing a very small part of the story.  Don’t you want the whole story?  Isn’t your health worth knowing all the facts before making a decision?

Christmas is a magical time of year when we make wishes for things we want, need, or dream about throughout the year.  If you’re facing a health challenge then you are probably wishing for health.  You shouldn’t settle for what may be the obvious.  You shouldn’t dive into a bin with a host of other people hoping to fish out the biggest bargain.  The pharmaceutical ads shouldn’t be like the circulars in your local paper inviting you to get a door buster just so they make their quota.  Pharmaceutical companies have sales people just like the vendors of a department store.  These sales people are urging doctors to prescribe certain medications.  The magazine ads are there to get you to ask the doctor for their prescription.  It’s not a conspiracy, but it is about preying on you, the patient, who has insufficient information to make the tough decisions about your care.

Posted in Caregiving

The Christmas Experience

Merry Christmas and Welcome to Caregiver Friday!!

I personally don’t celebrate Christmas, but there is something extraordinary about the time and effort put into the holiday season.  I was watching a program about Christmas in New York and there’s a restaurant (I think it was called Rolf’s) where four men take six weeks to decorate every inch of the restaurant…that’s dedication.

It’s not only the malls, but the specials on television, the smell of baking in people’s houses, and the feeling of community that makes the holiday special.  We went and delivered cookies to our neighbors last night and just got to spend a little time connecting.  Why is this important? 

During the year we’re all so busy especially if you’re caring for someone who is ill, that not connecting with someone over and emergency brings a sense of calm.  It’s the connection beyond the necessary.  Connecting with people without needing anything is the true blessing.  You can get back to needing them for help, encouragement, or whatever else you may rely on our neighbors for, but for this one day maybe it should be about connection.

It’s interesting because I was all caught up in following Santa’s journey from NORAD (the military defense group).  Every so often I would wonder where in the world was Santa and if I went to the website I could see where Santa was at any given moment.  This is the other part of the experience of the holiday…anticipation. 

Since you’ve become a caregiver/wellness partner your anticipation has been over things that weren’t pleasant, doctor’s visit’s, test results, or even worse an emergency hospital visit.  Having something to experience where there’s excitement without stress is a great feeling.  I know it may only be temporary, but if you think about it, life is temporary so why not take those small gifts and really experience them.

I wish you and your family a Merry Christmas, a Happy Kwanza, and a great New Year.  Take the time to connect and experience the joyful anticipation that comes with the holiday!

Peace and Blessings to you all!

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

It’s All About How You Frame the Experience

As usual I was watching ABC World News, now with Diane Sawyer, when a story came up about a soldier, Lt. Colonel Tim Karcher, who had been injured in Iraq.  He had lost both his legs and by the time he returned to Walter Reid Medical Center he was dying of an infection throughout his body.  His wife gently told him that if he needed to “let go”, she’d be able to raise the family and go on.  He survived and is being fitted with prosthetics so that he can walk again.  He’s hoping to return to the service in some capacity.  That story alone speaks about choices and how we frame our experience, but that wasn’t the turning point for me about his experience.

Being interviewed he calmly turned to the interviewer and said, “You can decide if it’s a life ending experience or a life changing experience”.  In a moment a flash went off before my eyes and I got it.  The message was bigger than any billboard I’ve ever seen, bigger than the Jumbotron at a ballpark, and deeper than any previous quests for peace.  He challenged each of us facing a health challenge to make a decision on the road we’ll follow.  We’re at a fork in the road and the choice is clear, sit ont he couch moaning and groaning about how life is unfair, or get up, get out and live each day with whatever vim and vigor you have left, or hope to cultivate down the road.

There’s certainly a place for self-pity following an illness diagnosis, but when it defines you there is a sense of hopelessness and that plays mean tricks on your body.  Your body is trying hard to get well and if you don’t give it your full support then you’re abandoning your own body, your own self and I don’t believe that’s your intent (well or sick).  How will your diagnosis be a life changing experience for you?

That soldiers one line makes what patients have told me for years, that their diagnosis was a gift.  It was a gift because they made it a life changing experience.  They took the illness and made lemons out of lemonade.  They put up with all the treatment regimens in hopes that their lives would be better to some degree on the other end, even if it meant a lifetime of treatment.  When the diagnosis is a life changing experience there are choices about how life changing and how it will change your life, but let’s say it opens your eyes to possibility.  Maybe it gives you the freedom to do something you’ve always wanted to do but didn’t have the guts to do…until now.

I recently listened to Michael J. Fox’s book, Always Looking Up, and even with all his fame and fortune, he wouldn’t have had many of the life affirming experiences he’s had without the diagnosis.  He has made his Parkinson’s Disease a life changing experience for him and his family.  He is living proof that it can be done.  If you look deeper and closer to your own personal experience I believe you’ll find people in your own sphere who have done the same. 

Your choice, life changing or life ending…I know which I prefer!

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

Is There a Middle Ground?

If you’re a procrastinator you only have about thirty-six hours left to shop before Christmas Eve arrives.  We’ve all had plenty of time to go out to the stores or make something, but what this season is about are hopes and dreams.  When a kid makes that list to Santa they’re world is full of possibility.  They begin their own journey as they wait for the big day to arrive so they can see if what is front and center in their consciousness actually materializes. 

As we get older we ask for bigger things with bigger prices.  “Why don’t we wish for the small things?”  I ask this because when faced with a health challenge the obvious wish is to be cured.  There are some who ask for healing (different from curing) but overall the wish is for a return to a life before the diagnosis…that’s not going to happen. 

What if we wished for things that are smaller but are still big?  Is that even possible?  Would you be okay wishing for fewer symptoms?  Perhaps you’d like to take fewer medications?  That wish has come true for many diagnosed with HIV/AIDS.  At one point there were clients of mine taking upwards of 20 pills a day, at different intervals, some refrigerated, and some not.  Today, the pharmaceutical industry did answer many patients’ dreams by combining medications into one pill or coming up with more effective meds that can be taken in fewer doses.

Another example is for those facing fibromyalgia.  It wasn’t too long along that there weren’t any FDA approved medications to help with the intense pain, but the past couple of years have seen strides that give relief to those with this particular health challenge.

Maybe you should wish for more pain-free days so you can dance, even if it’s in your living room.  Maybe you should wish for a good night’s sleep so your body has time to recuperate and you get to explore the wonderful world of dreams.  Just chunking the wishes down to more attainable outcomes will be a gift you give yourself. 

Wishes do come true when we maintain a bit of perspective.  Don’t forget to wish that the medical scientists of the world have enormous breakthroughs in the coming year…that’s one that would make us all rejoice!

Posted in coping with chronic illness, coping with life threatening illness, Emotional Health

Flash But No Picture

Last night I was watching the new Star Trek movie that came out on DVD in the last week.  It was good to return to the familiar space of the Starship Enterprise.  At one point they had to destroy a super nova by having it basically implode into a black hole.  Why is this relevant?  Because we each have those hot spots that trigger a big emotional response.  We all have buttons that get pushed and expectations that are crossed and like an exploding star there is a flash, but no picture.

This is all very fresh for me because I received an e-mail from school about the cancellation of a course I was scheduled to take in February.  The format of the school requires us to attend a one week intense intensive.  The e-mail stated that the course in February will be rescheduled for later in year.  I’m a bit sensitive at this point about scheduling classes because I’m coming to the end of my course work and ready to advance to candidacy, so timing is everything.  I read the e-mail and I felt like I shot across the sky like a shooting star.  It took me a few minutes to adjust.  First I had to get over my disappointment of missing the opportunity to study with these two incredible teachers.  Then I had to get over the anger of feeling like a pawn in the grand scheme of things.  I did what any “normal” person would do; I took the suggestions from the e-mail and bought the books for the new class.

Where is all of this leading?  We’re all going to have those flashes of internal heat that get our blood boiling.  What happens when our fuse goes off?  For those of us with a health challenge it usually ignites some type of physical chain reaction.  Our blood pressure may increase.  We may begin to have heart palpitations.  There are a host of symptoms that are right below the surface waiting for that “flash”, that opening to emerge and create havoc with our bodies.  What’s the solution?

Have the “flash”, but don’t linger.  Allow some type of expression, but don’t keep it as the theme of your life for the coming days.  Understand that beneath the “flash” is probably some other emotion, for me it was disappointment and frustration.  You can ask yourself the following question, “If I weren’t feeling angry, I’d be feeling ______” (you fill in the blank).  Fortunately, I’ve “flashed” enough times to know that there is a secondary emotion waiting in the wings, and that’s the real challenge for my emotional, spiritual and physical health.

Know the “flash” is going to happen.  Allow it to happen because stifling it will create a host of other problems, far worse than what may happen following the “flash”.  Emotional health is a critical component on our journey to wellness.

Posted in Uncategorized

The Last Big Push

It’s the Monday before Christmas and everyone is rushing like their lives depended on getting the exact gift.  You and I know that you can’t go to the store to buy the best gift of the year which is your health.  So what is your perfect gift?  What will bring you joy this holiday season now that your world view has changed…or has it?  It’s a time filled with anxiety and stress, culminating in a few hours of get togethers, ripping open carefully wrapped presents and food, but is that enough?

I just finished the book “prayers from a nonbeliever” by Julia Cameron.  It wasn’t the greatest book ever written, but it had a few snippets that caught my attention.  The book really followed her every day experiences and the struggles that were self-imposed in her life.  She created her own strife and anxiety and now she was writing her way out of it with her own version of “conversations with g-d”.  Over time she came to understand on a deeper level that any change, any gift(s) she would receive would be a result of her own belief and faith, and there’s no buying that in any store.

The post on Friday asked, “What’s on your Christmas list?”  I’ll ask it again in the context that I put forth above because it can mean the difference between getting caught up in all the trimmings of the holiday and the “shoulds” and “must haves” and experiencing the spirit of the holiday filled with connection, love, and compassion.  If you’re not sure about how perspectives shift; it may be a good time to watch Dickens’ “A Christmas Carol”, so you can see that when we reflect on what brought us to this point, any and all paths to health and healing are possible.

Posted in Caregiving

What’s On Your List for Christmas?

Welcome to Caregiver Friday!!

We’re at that time of year when children around the world have been writing letters to Santa Claus expressing what they want for Christmas.  It’s their one time during the year when they are excited over the idea that what they wish for can come true.  They don’t understand that their expression is proof not that Santa Claus exists, but that when something is important to them people (the grown ups) listen.  Can you think of any bigger gift than being heard?

So what’s on your list for Christmas?  The obvious number one wish is that the person you’re caring for will get well.  Let’s take that one out of the running since it’s a given and move on to deeper or more personal wishes.  If you want to get to the heart of the matter do this questioning with someone you trust.  Have the person ask you “what do you want for Christmas?”  You answer and they ask you once again “what do you want for Christmas?”  Keep doing this and the more times you’re asked you’ll find that your answers deepen and get to those hidden parts of your inner being.  You can probably come up with five or ten responses easily but what if you were asked the question forty times…what do you think would happen?

It’s an eye-opening experience to see what lies in the depths of your soul.  You’ve been so focused on the needs of another that reconnecting with yourself may be a foreign experience.  It may be that place you reserve for times when you have the time.  Let’s face it, do you really believe that you’ll be able to find the time to do the deep work?  That alone could be one of the things on your Christmas list.  One of the greatest gifts you can give yourself is honesty.  Don’t sugar coat anything!  Allow yourself time during the coming year to be vulnerable because keeping everything business like and stoic isn’t healthy for you.

You deserve a great holiday season!  Allow yourself the opportunity to create a soulful Christmas list that speaks to your core.  Let me know what’s on your list.

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

How Much Weight Do You Carry?

It’s holiday time and as we all know we indulge a bit more than usual and that leads to a couple of extra pounds.  Those are physical, tangible pounds; the ones we can see when we get on the scale.  What about the pounds or the weight we carry that can’t be seen?  How much weight have you put on emotionally and spiritually since your diagnosis?  Is it weighing you down?  Impacting your quality of life?  Slowing you down on your journey to health and healing?  The truth is that emotional and spiritual weight can be just as debilitating as gaining actual pounds.

When you put on emotional weight you tend to feel sad or depressed more often.  Your affect becomes flat so you don’t really have the lows but you also don’t have the highs.  The obstacle with emotional weight is that it impacts the immune system.  Slowing the physical immune system makes healing/curing more difficult and makes treatment less effective.  You’re less likely to be involved in your own care and your medical decision-making abilities are impaired.

Putting on the pounds spiritually robs you of grace and joy.  It keeps you in a tug-o-war with G-d, the Universe, your Higher Power wanting an explanation that is plausible.  Your faith waivers and that leads to over questioning your beliefs and maybe even the intentions of the Supreme Being.  It leaves you isolated and that has a huge impact on your physical health.  It leaves you like the Jews of ancient times wandering your personal desert aimlessly, hoping for an oasis or to be saved.  The fact of the matter is that you can be your own savior in these matters, you have to shed the spiritual weight.

It’s not about the weight you carry; it’s how you carry the weight.  Some of you are able to carry this added weight with grace and confidence.  You have the resources to combat this added weight, but if it leads to struggle you may want to think twice about the extra pounds.  Give yourself every opportunity for health and healing and understand and embrace that weight short circuits the mind, body, spirit connection.  Are you willing to pay that price?

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


Life has become more complicated and simultaneously easier as a result of technology.  In addition to magazines, radio, and television we have the internet and mobile devices that not only give access to information, but give it on demand.  So what’s the problem?  The problem for many is that if you read or research voraciously, then trying to keep up with all the latest and greatest information is a full-time job.  The information you receive may not be in accordance with everything you read yesterday, and you may not have created a system about how to handle all the information.

I read the Wall Street Journal six days a week and overwhelmingly there are articles related to medicine and health.  Yesterday alone had issues about your brain on music and information about how CT scans are linked to cancer.  Well if you are diagnosed with an illness, many diagnoses require that you have a CT scan so how do you weigh the benefits and risks?  Has your doctor read the study(ies) about CT scans and cancer risk?  The information was not only in the Wall Street Journal but on a segment on National Public Radio, so it’s prominent in our consciousness.

There are a couple of things to consider when retrieving the endless stream of health information.  It’s important that you pick what type of information you want on a regular basis.  Are you looking for information related to treatment, detection, or risks for particular illnesses?  Do you want to find information related to quality of life, pain management, or holistic health?  You need to know what your focus will be so that other information can pass you by without being inundated by the avalanche of information.

Focusing the type of information you desire will also direct you to the sources that will provide that type of information.  It will limit the amount of sources you have to acquire and search for while at the same time picking resources with reporters or scientists you trust and believe.  It’s easy to get caught up in all the information, but it can also cloud your vision because trying to sift through all the information is daunting task.  It can cause more psychic harm than physical health so be picky.  Don’t subscribe to everything and anything, be a connoisseur of health.

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

As Good As It Gets

In many cases, when diagnosed with a chronic illness it’s because you’ve had symptoms and they were probably escalating.  Aside from illnesses like asthma and diabetes that are more easily assessed; many of the illnesses may resemble one another making a definitive diagnosis more difficult.  You may have disregarded the beginning symptoms believing they weren’t really anything to worry about but the symptoms became exaggerated, more frequent, and even if they disappear for a period of time they return with a vengeance.

You begin treatment and the symptoms subside, maybe even disappear and that’s quite a relief.  You silently wish, maybe even pray that you’re finished with this chapter of your life and lo and behold the symptoms reappear.  We use the word “chronic” for a reason, because it is like a revolving door, symptoms…health…symptoms…health.  You may be one of those chronic illness patients whose symptoms never really disappear, but diminish in their intensity and impact.  You adhere to treatment regimen and you get results.  There is improvement and your quality of life increases.  You breathe a sigh of relief even though you’d like the symptoms to totally disappear.  So the big question is, “What if this is as good as it get?”

Being diagnosed with an auto-immune disease over 35 years ago I have experienced the entire continuum of symptom regression to total symptom expression.  I ask myself frequently, “how will I live my life is this (the current state of my body) is as good as it get”.  It becomes almost a mantra because a part of me says if I resign myself to this level of illness expression am I giving up hope that all my symptoms will disappear. 

The obvious answer is, I wish I were symptom free, but it really has become a matter of “how do the symptoms impact my quality of life?”  It’s not only about my physical health, but my emotional and spiritual wellness.  I’ve learned over the years how to combat feelings of sadness and depression.  I’ve learned and practice ways to increase my spiritual stamina so I don’t feel all alone on this journey.  It’s not about resigning oneself to living with an illness, but the acceptance that I can create the life I want to live by acquiring the external and internal resources I need to live a good life.

What resources do you need?  What if this is as good as it gets, how will you create a new normal?  How can you live the best life possible knowing that you may have ups and downs, remissions and flares, and emotional and spiritual challenges all along the way?  These are important questions that can’t be answered on the spot; so think about it and see what surfaces.