Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness, newly diagnosed illness, overcoming adversity, Personal Conviction

“The Normal Heart” A Relevant Message in Today’s Age

This weekend I watched the television adaptation of Larry Kramer’s The Normal Heart. The movie, based on Kramer’s play by the same name, chronicles the beginning of the HIV/AIDS crisis. This may seem like an entry on Facebook for Throw Back Thursday, but its message is current, and beautifully acted.

One may wonder why are we engaged and lauding the courage it takes to make a film about HIV/AIDS in the 80’s when we’re in 2014. I worked as a HIV/AIDS service provider in the 90’s. Things have changed enormously since then, that I’m grateful for, but there’s still more work to do, just as there is with cancer, multiple sclerosis, Parkinson’s disease, and mental illness. Using that as a jumping off point, why is The Normal Heart so important?

I was listening to an interview on Good Morning America with Julia Roberts. Roberts plays a physician who, at the beginning of the epidemic, is really the only doctor seeing these men with this mysterious illness and trying to get funding to unravel its mysteries.

One of the most poignant moments in the interview Roberts shared how the movie is relevant in today’s age. Roberts clearly talked about the need for us all to be willing to fight for a cause. We need to be able to go to the mat for something important, vital to our existence when it comes to our physical, emotional, or spiritual lives. The Normal Heart shows us the lengths necessary to bring about change. It provides us with the catalyst to ask ourselves what do we think needs to happen to make lives better for those facing challenges. What’s our part in the making those changes, and what are our next steps?

What draws at your heartstrings? One of the easiest ways is by looking at your Facebook account and seeing what you’ve “liked”. What organizations, stories, and posts bring about a visceral reaction? I have a friend who’s an HIV/AIDS nurse practitioner. She has devoted her entire life to finding a cure, lessening the impact of HIV on people’s lives across the planet. I follow the Old Friends Senior Dog Sanctuary.  They care for older dogs who have been abandoned or whose owners can’t care for them (mainly older adults). They post pictures of the dogs throughout their day capturing the hearts of folks like me (I have a 13-1/2 year old lab mix with many medical problems). There’s something we’re all drawn to and gets us going when we talk about it, most likely those causes we give money to or volunteer for, and for some the professions they’ve chosen.

The Normal Heart may reflect on days gone by, but its message it relevant today. If nothing else just the length of time it took to have the film made talks about how perseverance and passion fuels change. What do you use when facing a challenge to channel your energy for change?

Diagnosed with a chronic or life-threatening illness? Looking for education, support, and inspiration? Visit www.survivingstrong.com

Interested in the impact of Art on Healing? Visit www.timetolivecreatively.com

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Posted in after the diagnosis, Personal Conviction

Mirror Mirror On the Wall

One of the conditions that is associated with stroke is hemiparesis, the paralysis of one side of the body.  Stroke patients go through intensive rehabilitation to recover use of their limbs impacted by the stroke.  A new study that came out in The Lancet used Mirror Therapy to help patients rebound and recover from the stroke.

The study had patients perform their physical therapy in front of a mirror compared to the control group that did their therapy in front of a clear plastic sheet.  Although the sample was very small, overwhelmingly those patients who did their therapy in front of a mirror had greater improvements from their therapy.

By placing the patient in front of a mirror it “provides patients with proper visual input because the reflection helps the patient think tht their affected arm is moving correctly, even though it may not be, hence stimulating the brain to help wth nerve control of limb movement”.   This is truly a breakthrough in therapy for stroke patients or possibly any patient suffering nerve damage where limbs are impacted.

It doesn’t take rocket science to help people recover.  In this case a mirror is the factor that made all the difference.  It takes ingenuity to come up with the questions.  It requires that we continue the “what if” question because that’s how studies get designed…they start with a hypothesis.

Can you imagine how many patients can reduce the negative impact of stroke if they have access to this type of therapy?  You need to find someone who keeps on top of this information, like me, so you increase the options you have in your life.  I know it can be overwhelming, but being in the pipeline is how you will get access to the latest and greatest treatments.  I would hope that a stroke patient dealing with hemiparesis would go to their neurologist and physical therapist and ask about the Mirror Therapy.  It would have a big impact on your self-image and your quality of life.

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

Life Lessons from Determined Individuals

Part of my morning routine along with feeding the dogs and drinking coffee is watching the start of Good Morning America.  It’s amazing the tidbits I hear about new treatments, clinical trials and even simple life lessons.  Today is one of those days.  Chris Cuomo (son of former NY Governor Mario Cuomo) shared a news story about a 12 year old boy names Levi Johnson.

Levi Johnson was born with Cystic Fibrosis (CF), a devastating lung disease.  Most parents would shelter their children from any chance at infection and the child would be fairly insulated physically and socially.  Levy achieved a phenomenal achievement.  He won 2nd place in a National Bull Riding competition.  That’s not just great for someone with CF, it’s amazing for any kid his age.

I began thinking about all those I work with who have some type of chronic or life threatening illness and began counting all the self-limiting stories we all tell ourselves about what’s possible.  What if you had someone in your life who would encourage you, support your or simply challenge you to get out their and keep riding (metaphorically)?  What is it that you want to do and what’s stopping you?

It’s clear that not all of us even when healthy would have been able to achieve what Levi achieved, but there is something in your world that is equally as important to you that’s waiting for you to begin.  Hopefully it’s something just outside your reach so you have to stretch a bit, but it’s doable.

If nothing else take a lesson from this 12 year old boy…get back on your own bull and keep riding.  The limitations we impose on ourselves can be more harmful (especially emotionally and spiritually) than the disease itself.

Let me know what you’re going to tackle and let’s see how we can support you!!!!!

Posted in coping with chronic illness, coping with life threatening illness, Personal Conviction

Oprah and the 140 Pound Tumor

On yesterday’s program Oprah had Dr. Oz to discuss what made news in medicine over the summer.  The big story (pardon the pun) was the woman with the 140 lb. tumor.  She lived outside of a metropolitan area and had been seeing her doctor for twenty years.  She was putting on weight that the doctor wanted her to lose but it didn’t happen.  Finally, after a couple of years they find that the weight is a tumor.  It has to be removed surgically in pieces, kind of like the de-installment plan.  The sad part of the story is that the tumor is malignant.

Dr. Oz tried without judgment to express his concern, at this point mainly to the viewership, that we’re all responsible for our own health.  If this woman was trying but couldn’t lose weight and the doctor didn’t have any ideas, move on and get a different doctor.  Many would argue that she didn’t want to know what was wrong and in the end it will probably result in her death.  So what’s the take-away from the segment?  They asked the woman what would she like to share and her response was get a second, third or fourth opinion if necessary, but don’t just sit back waiting for things to happen.

The truth is that economics and geography play big roles in our healthcare system.  Underserved communities often lack the continuity of medical care with doctors rotating in and out.  With gasoline at $4 a gallon traveling to urban centers may not be feasible, but the trade-off is possible death (of course I’m not talking about routine healthcare, but certainly when a specialist is needed or a diagnostician with cutting edge technology is required, find a way to get there).

We have to be more conscious about our bodies.  It’s important that we become intimate with our bodies, not in a sexual way, but as if you are having a relationship with your body.  You want to know every freckle, fold and mole.  It’s also important to turn up the volume on your intuition.   When you know something is wrong don’t stop asking the doctor to keep looking until you find a plausible and acceptable answer.

Don’t cut your life short by turning a blind eye to your body and your health.  Don’t look at medical providers as adversaries, but as partners in your healthcare.  Prevention is best, but if that’s not possible catching things early (before they weight 140 lbs.) will most likely save your life.  What’s your life worth to you?

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

The Importance of Specialists

I attended a conference on Multiple Sclerosis this weekend presented by the Colorado MS Society and Healthsouth Rehabilitation hospital.  The turn out was small, but those who attended certainly received lots of great information.  The speakers included a neurologist, a social security representative and an attorney who specializes in appeals for disability.

At the start of the day I was speaking to a representative from a drug company when a woman approached the table looking for information.  She shared that her mother has late onset MS and she was here to gather information.  When asked about her mother’s medical care the woman responded that her mother was seeing an internist.  My eyes and the eyes of the two drug reps grew wide with amazement, shock and bewilderment.

I believe that General Practitioners and Internists are great for two things: the every day illnesses we face like colds, flu, infections, more common illnesses and in addition I believe they are terrific diagnosticians.  It is their responsibility to continue asking the questions so that a proper diagnosis can be made.  This does two things: gets the patient the proper care and allows the physician to know there is another provider they can partner with on this particular patient.

It is crucial that once you receive a diagnosis for a chronic or life-threatening illness that you get a referral to a specialist.  The specialist should have a background in your disease and treat many patients with that diagnosis.  The specialist has additional training and keeps informed on the latest treatments, studies and clinical trials for medication.  They are the experts and for any specific illness a specialist is your best chance at health and wellness.

The neurologist who spoke at the conference this weekend shared that she has 500 patients with MS in her practice.  She’s connected to a community that focuses on options for MS patients both clinically and in the arena of social services.  One of the keys to being a good health advocate is getting the best care available to you.  This is not the time to pick a doctor because you’ve been seeing them for ten years.  Your health status has changed and this is no time for allegiance, but to find a provider who understands your disease process and helps you make strides toward wellness.

Don’t settle for less than expert care!

Posted in after the diagnosis, Anonymity, Caregiving, Community, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness, Personal Conviction

What Do You STAND for?

The three major networks did something unheard of Friday evening.  The three networks combined forces, resources and audiences for “Stand Up To Cancer”.  It was a combination infomercial, telethon, education forum and entertainment.  The hope was to raise money for cancer research.  The commentators kept referring to the “dream team”.  The “dream team” refers to the network of cancer researchers on the brink of amazing discoveries for cancer treatment and cure.

It’s amazing that an illness takes center stage on the major networks during prime time.  The idea that together we’re stronger was certainly emphasized along with the opportunity to bring together big entertainment names shared amongst the networks.  It is truly a tribute to ingenuity and technology when the networks for the good of the country and those facing devastating disease can be helped.

Then last night ABC showed “America Stand Up”, all this standing could make you tired.  The show was a tribue to our troops who are fighting overseas for our freedom.  It’s through their commitment and bravery that change can happen in the world.  Remember, this is about supporting the troops, not supporting the war…there is a big difference.

All in all what does this tell us.  It punctuates that when we come together we’re stronger.  It shows us that standing for something, anything is enriching and builds our immune systems.  When we feel engaged and empowered to be a part of something bigger than ourselves we experience gratitude and that feeds the soul.  The notion that we can alter the course of history is worth noting.  We’re able to bring to the public’s attention information while asking for help to make the world a better place?

What do you stand for?  How do you think it impacts your life?  How do you want to use your voice?  Share it with us and let’s stand together!

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

Medical Training: What Are the Patient’s Rights

It’s interesting when things I’m reading and watching on TV come together and make me begin to question what’s going on for patients in the hospital.  I’m reading Christine Montross’ book “Body of Work”.  It’s her story of going to medical school and her experience in the anatomy lab.  This book is not good reading for those with a queazy stomach.  The TV show I’ve got on my DVR is “Hopkins” following med students, interns, residents and attending physicans at Johns Hopkins University Hospital.

I have lots of friends who are doctor’s and nurse practitioners.  Overwhelmingly I’ve been told don’t go to the hospital if not an emergency in July because the new medical graduates are prowling the floors looking for procedures to add to their repertoire (just watch Grey’s Anatomy/ER or any other medical drama).  This is particularly true in teaching hospitals, but you should be aware that the doctor examining you, now, the 2nd of September may only be out of school for two months.

I understand that new doctors need to learn, but isn’t it important that patients understand their rights when it comes to who performs procedures.  “Hopkins” showed a new resident removing fluid from an older woman’s lung and in the procedure punctures her lung requiring surgery.  She then requires that a “real doctor” (which the resident is) perform any further procedures.

Dealing with hospitals is traumatic enough without having to question the experience of the person performing a procedures.  As your own health advocate it’s perfectly fine to ask about the doctor’s credentials. How many times have they performed the procedure, what are the risks and if the person is new to the procedure who will be there to oversee the procedure should there be a problem.

I’ve had physicians who were just out of residency, but not just out of medical school.  Every profession has a training ground, but we’re usually informed and have to give consent not only to the treatment, but to understanding that the person is in training.  When I was doing my psychotherapy internship while in graduate school, all the clients were informed that we were graduate students and not only did we have minimal training, but the sessions would be reviewed by our practicum supervisor.  True, we weren’t in a life or death situation, but the standards should be equivalent, don’t you think?

Have you had any experiences that where you’ve had to advocate for yourself to get the care you want?  Share your experience and let others learn from your courage and self-advocacy.