Posted in Having a Voice

Women Should Be Outraged

I read a lot of health related articles and blogs.   Recently one article in the NY Times caught my attention because it showed the gender bias in our society.  The article was about drugs for lupus.  A new drug for lupus hasn’t come on the market in almost 50 years.  The old treatments are used but nothing seems to be emerging as the new kid on the block.

What concerns me is that the article also stated that 9 out of 10 diagnosed with lupus are women.  If 90% of the cases are women why are women more outraged about the lack of new treatment strategies.  I may not be a woman, but I can certainly be outraged by what seems to be a clear case of gender bias.  Would the same lack of advances happen if 90% of those diagnosed were men?  I Think Not!!

The follow-up question is what is going to be done about this?  Are women’s groups talking about the need for more research, clinical trials, and eventually treatments that will aid those diagnosed with this disease?  How can women’s groups come together and make it a real Women’s Health Crisis?

I know I’m probably preaching to the choir, but 50 years is a long time to go without any new treatment strategy.  If that were true of other diseases we’d be in a lot of trouble.  We’ve got science and technology, so is it the money?  Is Lupus not a high-profile disease?  Do we need some big celebrity to be diagnosed or a politician in order to get things moving along?

What are your ideas?  How can those diagnosed with lupus and their loved ones come out and take a stand for more research.  This illness is often debilitating for those diagnosed so new treatments are not a nice idea, they’ve got to be a priority.  I’d love to hear your views on this health crisis.

Posted in art and healing, Emotional Health, Having a Voice

Artist as Healer

Like so many artists it was easy at first to believe that I create art for its beauty.  Over time and based on the work I was creating I came to understand that, for me, the art was the process.  The amazing thing about art is that it is truly a two step process, the creation and the viewing.  Yesterday I wrote about Amber Augustin and today I’m here to tell you that she’s not only an artist but a true healer.  The amazing thing is that art is truly a universal language; we just don’t get enough practice speaking it.

Now that I’ve had time to reflect on Amber’s work I’ve come to certain conclusions about why the art she creates for these parents facing difficult times is so healing.  Amber’s photos are respectful and intimate.  She honors not only the child who is truly defenseless at the moment of birth, but she serves as the child’s protector by watching over the child with the healing energy of an angel.  She’s able to capture the intimacy we know exists between a parent and child within the parameters of a hospital, the NICU to be more specific which is often impersonal, loud and intimidating.  Finally, she allows the child, whether the child lives as her son did or not, to have a legacy.

Think about those viewing the photos.  Extreme Makeover Home Edition set up a gallery and invited the families touched by Amber Augustin’s generosity and eye for the miracle of the child.  Their appreciation for the work was inspiring.  Their capacity to hold the pain with grace speaks to each family’s spiritual and emotional stamina.   Amber helps to build a community so no one is left out in the cold.

We all need angels in our lives like Amber Augustin.  If you have been touched by art for your own healing process I hope you’ll share your story with us.  I know that artists are angels.

Posted in care for the caregiver, Caregiving, coping with chronic illness, Having a Voice

Find a “Happy” Social Network

Welcome to Caregiver Friday!

It’s all over the news…laugh and the world laughs with you.  (that’s definitely better than the world laughing at you)  The study conducted by researchers at Harvard and University of California San Diego found that happiness is contagious.  I know what you’re thinking, how can you be happy when you’re caring for someone who is ill.  I’m not saying you have to be jubilant or throw a ticker tape parade, but a bit of happiness like a pinch of salt in cooking may be good for you on multiple levels.  As it seems to show, it can also be good for your neighbors and community.

What we’re really looking at is the power of social networks.  Technology has certainly changed many of our definitions of community, but let’s look at it from multiple levels.  On the more personal level, when your neighbors see you as you pick up the morning paper from the driveway, smile and say good morning and ask about you don’t you feel happy?  If you do that for someone else and they snub you don’t you make a comment about the sourpuss who lives in the neighborhood.  I know it sounds a lot like forecasting the weather, but in some ways it does seem to travel like the wind.

On the technology side, with networks such as Facebook, Twitter and blogs galore, can’t you hook in to someone else’s happiness?  Don’t you feel uplifted when somene wants to be your “friend” and then starts a dialogue.  I just found a friend of mine from high school (I grew up in NJ) and she’s living in CA.  The interesting thing is she moved 30 minutes from where I lived in CA and she moved there the year after I moved there.  The world is much smaller than you might think.

“Being happy also brings other benefits, including a protective effect on your immune system so you produce fewer stress hormones, said Andrew Steptoe, a psychology professor at University College London”.  Caregiving is stressful so anything you can do to lower the stress hormones protects you, the caregiver, from developing your own health complications.  Just because you’re caring for someone who is ill doesn’t mean you have to be serious all the time.  Yes, certainly be serious about helping the person who is ill, but don’t deny who you are as a social being.  Don’t deny yourself the opportunity to interact with the outside world.

Why do you think that support groups have been so successful?  It’s because you find others in the same situation, who understand you, and even make off colored jokes and remarks that only someone in your situation  would or could find funny.  (those on the outside may consider it bad taste, but it’s life saving)

We need to connect because we’re social creatures.  So you have a choice, network with happy people and reap the rewards of happiness or network with curmudgeons and keep that narrow, fatalistic approach to life…the choice is yours.

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

I Fired My Nurse

It’s important when facing a chronic or life-threatening illness that we maintain some level of control over our lives.  Being at the mercy of others isn’t good for the psyche.  Unfortunately some members of the medical community feel that they are always in control and we should act like marionettes.  The truth is that the medical community is in our employment…they work for us.  Here’s what happened.

I have lab work done on a quarterly basis.  My appointment was on Friday so I went to the lab on Tuesday and to my dismay there was no order from the doctor.  Tuesday afternoon I got a call from the nurse telling me that the order was placed and I needed to go since my appointment was Friday.  I shared that I had a already taken my morning to visit the lab and left because the order didn’t exist.  She kept telling me that it was my responsibility to get the lab work done before my appointment.  When I said I didn’t know if that would be possible, she told me the doctor wouldn’t refill my prescription before he had the lab results meaning I would run out of medication.  I was mad…very mad.

I went for my appointment on Friday and had a great visit with the doctor.  We talked about new tests I’d read about to determine how I metabolize medication; different treatment options and reviewed the labs that I was able to squeeze in.  He asked if I had any other questions and told him I had some concerns about how the office was run.

First I asked what happened to the nurse I’d been working with for six years.  He told me she had been promoted (that made me happy).   I told him I felt the new nurse was rude, argumentative and judgmental.  When I told him that the usual standing for lab orders didn’t exist he said to me, “We’ve talked to her about this and I guess we’ll have to talk to her again”.  For me the story has a happy ending.  I told the doctor that I didn’t want this nurse ever calling me or having anything to do with my healthcare.  He is willing to have the former nurse, now supervisor, be my contact person with the office.  I very grateful that he could hear my concerns without being defensive.  He looked for solutions that would make his office run smoother and offer me, the patient, great care.

We have rights as patients and one of those rights is to be treated with respect.  We are the CEO of our health and that comes with some responsibility.  It means that when we’re not getting what we want we have to be assertive and let the medical community know where the gaps in service exist.  I don’t want to struggle through my healthcare system, I want to devote all my time and attention on my journey to wellness.

Ever have a similar situation?  Please share so that we can build up a fountain of strength for those who need to take the plunge and assert themselves with their healthcare team.  It can mean the difference between life and death.

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

Creating a New Mantra

Welcome to Caregiver Friday!

Ever feel that once you assumed the role of caregiver that you automatically became a magnet for every negative emotion in the world from those around you?  Ever wonder how things you did every day before the patient got sick that were fine are now the bane of their existence?  Ever wonder why you have become the human fly paper for the negative emotions expressed by the care recipient?  I could go on and on but I think you’ve got the point.

The truth is that the care recipient (the patient) is going through enormous turmoil and they are, as the Buddhists say, leaking.  They have a reduced capacity to govern their feelings because they are overwhelmed…and so are you.  The difference is some say the illness is a “get out of jail free card” for their behavior.  The truth of that statement doesn’t matter, the outcome is what matters.  So what’s the new mantra for caregivers?

“This Has Nothing To Do With Me”

The reason that the emotion is directed your way is because you are there.  You have devoted your time, energy and compassion to assisting the patient in getting well.  It’s not that they don’t appreciate it, but if they spoke to or treated friends the way they speak and treat you at times those folks would be gone.  The first question to confront is what truth is there in the complaint.  We’re all at fault at times so keeping your side of the street clean is primary.  This doesn’t mean you should hold back how you feel, but definitely choose your battles.

The mantra “This has nothing to do with me” should be tattooed on the palm of your hand.  You’re going to need a constant reminder so if you’re not into tattoos then consider post-it notes on the mirror of your bathroom, by the telephone or by the computer.  It’s going to take some time to say that fly paper is all dried up, the magnet turned off and the complaint department closed.

Understand that this doesn’t mean you stop caring for the person, but you are refusing to take on their emotional turmoil when you have enough of your own.  It’s okay to set parameters for dialogue.  Discussions are good, arguments don’t serve any purpose.

Some may say that you shouldn’t judge a person before you walk a mile in their shoes.  We’re not judging the person with the illness.  We’re creating a container of understanding by visualizing their leaking emotions.  For some of the folks you’re caring for it may seem like a breach in a nuclear reactor so you may need to say your mantra over and over again.  It’s kind of like the 12 step programs and the serenity prayer.  When people need a moment to regroup they say the serenity prayer to ground themselves.

I hope you can see that by accepting this new mantra you’re not becoming uncaring; in fact I think you’re extending your care because now you have a new level of understanding.  Instead of feeling bogged down by the anger or frustration by the patient you can chalk it up to a breach in the nuclear reactor.

How are you handling the frustration expressed by the care recipient?  This is an important aspect of caregiving because left unresolved it leaves you, the caregiver, feeling unappreciated and that leads to resentment.

If you have a mantra that gets you through your caregiving experience please share it with us.  The goal is to create a strong caregiving community full of resources and support.

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

Shame On Advair

I think I mentioned last week that I had attended a conference on COPD (Chronic Obstructive Pulmonary Disease).  COPD is a serious lung condition that results in many using oxygen 24/7 as the disease progresses.  One of the keys to living with COPD is becoming aware of your body, your lung function and those things that trigger pulmonary problems.

I was watching television the other evening and an advertisement for Advair Diskus 250/50 came on with a man talking about having COPD.  He credits Advair Diskus 250/50 with restoring his lung function so he can engage in every day activities.  I got to thinking about the advertisement because I was shocked and angered.  The man is working in a wood shop helping his son build a boat.  He’s using tools that create dust and put wood particles in the air.  He’s using toxic paints and varnishes to seal the boat and this doesn’t take into account the fumes that are created by paint and varnish.

Is the maker of Advair Diskus 250/50 (GlaxoSmithKline) for real?  You think it’s okay to put this advertisement on the air?  Placing someone in an environment that could and probably will cause irreparable damage is irresponsible.  The fact that this man with COPD isn’t wearing a mask or a respirator is a violation of common sense, good judgment and you as a company being socially and medically irresponsible.

The drug may help someone breathe better, but does it give them license to put themselves in harms way intentionally?  Would you really recommend that someone place themselves in harms way and then to alleviate their respiratory distress use Advair Diskus 250/50?

I would hope that GlaxoSmithKline the makers of Advair Diskus 250/c 50 would be more responsible in their advertising.  It gives false hope and is irresponsible.

Have you seen advertisements that aren’t reflective of good common sense when it comes to illness?  If so, let us know so that we can address it!!!!