Online Patient Onions - the Advocate Sounds Off

Are you an onion as an online patient?  Let's find out...

Facebook, Linked in, Twitter, Pinterest, Learnist... all these are social media platforms in which health advocates frequently participate.  As advocates, we are often asked to *friend* someone we have never met before because of our advocacy activities.  We're considered patient *experts* by patients and physicians, and when patients want to talk to other patients who can help them, we're the ones they're looking for.

What is your personal policy on these requests?

Most advocates will do a cursory check to see if the person requesting the add is someone that appears to have something in common with us, or just another spammer.  Provided the person requesting the add seems sincere, most advocates will happily add them in hopes they will bring something useful to the community and the conversation, or that there is something we can help them with.  My policy is that I don't *unfriend* people unless they are spammers.

Most of us are advocates/educators because we've been through the mill ourselves and want to try to help other patients to avoid the pitfalls we have already encountered.  We open ourselves up very personally to people we've never met in hopes that they might find something useful in our stories that will be helpful to them.

However, although we as advocates are members and even sometimes leaders of online communities, that doesn't mean that WE are communities.  Our personal pages on these online platforms are not communities nor are they democracies... they are personal. 

As advocates we spend most of our lives helping others with their questions etc.  But have you ever wondered - where do advocates go when they need support or information?  That's where our own pages can be so really important to us.  It is the one little place we have that we get to express ourselves as ourselves.  It's our little place to open up and be a little crazy or hopeful, weeping or joyful, or just tell our friends about our day or our passions.  It's our safe haven.

I admit I do tend to take it a little too personally when someone asks for an add and then shortly thereafter leaves without an explanation to me, even though it's likely they just didn't find a *friendship* to be a good match, or the information I provided those days didn't match up with what they were looking for. 

The Importance of Tolerance and Respect

On one hand, I would really like to know why someone feels the need to secretly drop me instead of simply remaining *friends* and unsubscribing to me so I don't pop up in their feed five times a day - something I forewarn most new *friends* about.  This is usually the result of not knowing how to use the tools of the platform.  If you don't take the time to get to know someone, how can you hope to well... get to know them?  I appreciate those who take the time to give me some sensitive feedback about why they are unhappy or leaving.  Fortunately some do, often just to let me know they found what they were looking for education/information wise and are moving on.

On the other hand, I am just a human being.  There's nothing special or different about me other than my willingness to share my vast and very personal experience.  This means I also have feelings.

Because I am an advocate and work with an incredibly diverse group of individuals, I try to refrain from things that can cause division between my online pals.  I'm not here to push anything but wellness.  My goal is to discuss ways of coping with chronic illness. 

Politics is avoided in particular, not because I am not politically active ( I put my money where my mouth is and even write and go to Congress and state legislators to be heard each year) but because I respect the views of all my friends and am very sensitive to their passions.  I love raging liberals and some raging conservatives and tea partiers.  I don't care about your political alignments, your sexual orientation, your religion (or lack thereof), socio-economic position or if you've been to jail or drink too much.  We're all people.  We laugh, we cry, we feel pain and we all goof up sometimes.  None of us is perfect.  All are cared and prayed for on my page, and disrespect or fighting is not tolerated.  Tolerance and respect is something very high on my list of priorities and expectations of others.

That said, when it comes to my personal pages/walls etc, it is my right to put there whatever I want within the scope of the site's rules.  My wall is not a democracy. 

It's My Wall

My profile on Facebook is open to others to read and interact with, but it is my wall.  This is my blog.  When others go either place, they need to be ready to accept or dismiss whatever they find there, like it or not.  I am a unique individual (in oh, so many ways!) so it is the rare person who won't someday find something that raises an eyebrow.  All I ask of others there is to please, be constructive and be kind to one another.

Tolerance, Tolerance, Tolerance

This week I was disappointed to have received a nastygram from someone who recently asked me to add them to my Facebook page.  After being there a short time, they removed themselves from my page and sent me a lengthy private message explaining that they didn't like a quote by a famous person that I had *liked* on a relative's wall which had been shared and reshared multiple times all over the internet.  The post related to the Aurora, Colorado shootings and was taken and shared on some great places as well as some unsavory ones.  This quote never appeared on my wall or any personal page, nor will it.  The *like* was a sign of support for someone living in Aurora when the event occurred.  Although I make it a point not only not to disclose any political affiliations or personal feelings on my personal wall, but also do not put anything political on my wall.  However, Jill went on to explain that she was "shocked" at all the political posts I put on my wall.  (Say what?)  As a liberal, she stated she was "offended", although followed that by stating she doesn't judge people by their political affiliations. (???)  She went on further to say,

"I felt like this was my place to come and be with others who are in pain as I am. I have ignored several posts already, but they are making me feel like I do not belong here so I will be leaving."

No hon, this is not your place, it is mine.  My wall.  My profile.  My space.  It's your job to ignore those things you don't like (whatever they might be).  If I had actually created these posts (which I did not) this is what the scroll bar and delete buttons are for, as well as private messages to clear up misunderstandings or miscommunications.  Learn about the platform/tool before you use it.  I feel sad that you are so lonely, but that is likely to be a problem for you so long as you continue to show outward intolerance and disrespect for others and their feelings and personal spaces. 

I have an active prayer chain, maybe that is what she was offended by?  Who knows.

She ended her note by stating,

"I ... hope that you will reconsider others feeling in the future. I know, I am being a typical liberal. Poor people generally are liberals I guess."

She seems here to make the assumption that I am "rich" and a selfish conservative, but worse, that I am callous to the feelings of others.  *OUCH*

Good people don't let disagreements get in the way of good friendships and I try very, very hard, so this was just too much for me. 

I'm not even going to start the stories of growing up poor in Oregon, or living nearly 6 years now in a house that is only half finished on a farm where I had to sell my beloved horses/business because my health forced me to quit working my 3 jobs and made me virtually housebound.  Those who follow me have heard some of them. 

She obviously didn't take the time to get to know me or she would know better than to make these ridiculous insulting assumptions.  Although my family's finances are the business of no one else, I will share that today we live paycheck to paycheck, have no retirement or savings, and I buy necessities like clothes once every year to 18 months.  I am just a normal person trying to make the best of a very bad situation.  The majority of our finances goes to pay for our home and my medical needs.  I work for pay only a couple hours a week.  The rest of my time - around 13 hrs a day- is spent diligently helping people online in a voluntary capacity: 

I volunteer as a medical first responder, answering the radio whenever it calls and I am physically able to respond.  I volunteer as a CERT (Community Emergency Response Team) trainer, coordinator and member.  I volunteer on our local Search and Rescue team.  I volunteer with youth and families on a personal level.  I rescue animals, and people. I go to church and openly pray for everyone who asks.  I am a devoted friend and family member, not only to those related to me by blood, but by love and friendship alone.  What's mine is also yours, if you're my friend.


So, if you see something you don't appreciate, then send me a private message and let me know so I can be more careful next time.  I am always ready and open to learning new things and improving myself.  I am faaar from perfect.  Nastygrams aren't helpful to anyone. 

If this makes me a bad person, then, so be it.  "I yam what I yam".

Onions are a Migraine trigger for me... the sweet edible food, and the sharp distasteful people like this one.


Jill A. T. D. you made my personal Onion list for intolerance and disrespect as well as making poor assumptions followed by quick actions based on those silly assumptions.  I hope you're able to find someone else to help you who meets your lofty expectations. Maybe getting involved in a real community instead of a person's private page would be a good start.  Chronic pain is a terrible thing to have to endure all alone.

A Migraine T-shirt

Saw a T-shirt about autoimmunity that I liked, so I turned it on it's *a-hem* head.  This is what I want my T-shirt to say:

My brain can create a wave of spreading cortical depression that makes me see, smell and hear things that aren't there, takes away my ability to speak, creates invisible lightning across my face, inside my ear and down my throat.  Then while I lay alone, it pretends it's being attacked by a sword swinging, eyeball stabbing, sledgehammer wielding, vomit triggering pissed off monster for days on end, resulting in the loss of friends, family, jobs and... sometimes lives.  It does all this, invisibly.

What does your brain do?

Too Much Information or Too Little Education?

Today I read the excerpt from a book that, as a patient educator and advocate, really set me off.  The title of the Scientific American article is: "Can Too Much Information Harm Patients?" and it is essentially an excerpt of the book The Creative Destruction of Medicine: How the Digital Revolution Will Create Better Health Care (Basic Books, 2012), by Eric Topol, a professor of innovative medicine and the director of the Scripps Translational Science Institute.

I began reading with an open mind, thinking to myself  "Okay, this guy could go in either direction with this.  Let's hope it goes right."  I am all about the digital revolution creating better health care, and I foresee a lot of really amazing things in the future of medicine as a result of the changes that are becoming necessary for both physicians and patients in this new world where information is so easy to get hold of.  

But things went terribly wrong... 

The way I read the article/excerpt (you can read it yourself and tell me if I went wrong) the author feels that patients need to be kept in the dark about "extra information" for their own good.  Are we, after all, simply paranoid ignorant people without the capability to understand our own bodies nor our physicians?  Should information be withheld from patients as a result?  

My take on the author's statements lean toward this explanation:  Because we are incapable of understanding what is best for us, we simply should not be told the truth for fear we will make irrational decisions based upon that fear and our ignorance.  We will be taken advantage of because of that fear.

The word *sheep* comes immediately to mind.

This reminds me of an altercation I witnessed in a restaurant during a headache symposium which involved two folks which will remain nameless here.  The advocate was confronting a doctor of psychology who felt it was necessary and prudent to lie to patients because they couldn't mentally handle the truth.  After much discussion the two colleagues had to agree to disagree. 

I wrote about this topic several years ago, a blog entry for WEGO Health which may be found here.  I have not changed my opinion nor my disdain for physicians who are not forthcoming to their patients.  In the immortal words of e-Patient Dave (who incidentally found out by accident he had cancer, then used social media to find a cure for it) - "Gimme my damned data!"

The test's job isn't just to diagnose, but to educate - both the physician and the patient.There is no such thing as "extra" information because it is all important.  It just may not be applicable today.

The physician's job is not just to diagnose and treat, it is also to educate and support the patient so that appropriate and smart decisions are made by that patient.

While I do understand the story the author Eric Topol mentions in the excerpt, I can't help but feel this patient was cheated.  Not because he paid for a test he probably didn't need that day, but because nobody felt the need to educate him about what the test and the results might mean for him.  When he received news that there were abnormal findings, nobody took the time to educate him what those findings meant for him.  He was offered a procedure, but wasn't educated about his options.  Once he underwent the procedure he likely didn't really need, his mistake was not really discussed with him in a way that he became an educated patient more likely to make better decisions in the future. 

This patient was failed by many.

This man wasn't failed because he was told about his "extra information".  He was failed because he was not appropriately educated by people who should have known better. 

This is a country that focuses entirely too much of our efforts on fixing the problem, when we should be looking at the cause and fixing that instead!  Let's prevent disease, not wait until there is a life altering problem to do something about it.

I do advocate for testing.  However, I do that in the context of education.  Let's teach patients how to be good patients.  

Let's talk...

1. About their condition/disease/disorder.  A well educated patient makes smart choices about their care, not decisions based on fear.
2. About the test itself.  Are we looking for something, or ruling something out?  Why it is being done and what we hope to learn from it.  Are there other options to get the same or similar results?
3. About their results.  What this means to the patient's specific circumstances and future.
4. About their treatment options. What are they? What are the potential outcomes? What will likely happen to the patient if they treat, or choose not to treat?
5. About the importance of second opinions. Life changing therapies shouldn't be initiated without at least one of these.

Give patients their data.

The fact that so many patients are taken advantage of by a system that sees them as an ATM, only serves to prove my point that the wise patient takes the bull by the horns and makes sure they are adequately educated.  There is a need for online places to go to get the education patients are being denied.  The least that a harried-doctor-without-enough-time-to-talk-to-a-patient-to-educate-them could do is prescribe a good health community to do his/her job for him.  Thankfully, this is happening more and more frequently.

Consider for a moment the impact that this "extra information" could have had when the patient in the excerpt eventually did begin to have symptoms of his condition. Think of the time he could have had to educate himself about his options.  Hmmmm.

In the end of the excerpt, the author seems to at least in part agree with me, saying that the consumer needs to be able to understand the information they're given or trouble will likely ensue.  I am just of the opinion that all information is important, because you can't use a crystal ball to see into the future and tell the patient that it isn't ever going to be important.

I would love to read the rest of his book to see if the author produces a balanced discussion, but that will have to wait for another time.

In the meantime, if you're a patient, get and keep paper copies of all lab reports and imaging reports.  Don't depend on anyone, doctor or nurse, to tell you your results.  Get them for yourself and start asking questions. 
 

Does Your Headache Warrant Further Analysis?

Migraine is a primary diagnosis of exclusion.  This means that one of the first things that needs to happen is our doctors need to be sure that pain and other symptoms aren't being caused by something else.

Physicians often use mnemonics to help them remember things.  In this case, the mnemonic that helps doctors remember what to look for is...

Systemic symptoms or disease

Neurologic signs or symptoms

Onset: sudden (such as in thunderclap headache)

Onset: after age 40 is unusual in Migraine

Pattern change

After looking at these things, the answers will help your physician decide if there could be something potentially more ominous going on that warrants a closer look-see.  

When patients understand how their doctors are looking at them in an office visit, it is more likely that patients will be able to give them the information their doctors need to help them.  Maybe remembering this little trick will help you communicate with your doctor at your next visit.

~Ellen

Real Heroes Don't Wear Capes

I'm a medical first responder for our county.  I help the ambulance crew assist people in need of medical attention in a county that is far too large for its tiny EMT resources.  We get to the scene before the ambulance could possibly hope to arrive there.  

Most of the other first responders are also volunteer firefighters for each of the fire districts within our county.  Because of my long term relationship with these folks, I get concerned when the weather gets hot and dry... and when I hear the tones that call them to a fire like the one happening here as I write this. 

So...

Here's a little fact for you: 

More than 3/4ths of all the firefighters in the United States are dedicated volunteers who leave work and family to help out their community. They pay for their own clothing and supplies, and often even their training. They risk their lives for our property and our well being. 

Emergency Services update before a school drill

 

When they see dry conditions, they mentally prepare themselves for a day that could end in trouble. When it's hot outside, their troubles are compounded. 

Feel free to donate bottled water to your local fire department on hot, dry summers. Donate time to help spruce up the house and trucks. Donate money to help them pay for training and maintaining the equipment. If you have none of these, offer them your hand in thanks. 

♥ Real heroes don't wear capes. Sometimes they wear dog tags, or surgical gloves, metal stars on their chests, or bunker gear and oxygen tanks. ♥ 

Please pass this along to your friends...

Part 2: Migraine and B12 Status: What Your Doctor Doesn't Tell You

See Part 1 here

B12 comes from animal sources.  

Strict vegetarians who wash their food well will need supplementation of B12 to survive.

B12 is absorbed in a complicated fashion.  Any problem along the chain that leads to absorption and storage in the liver will result in it being passed through the body in fecal material.

B12 is first freed from its protein bonds by acid in the stomach.  As a result, anything that depletes or lowers stomach acid (such as proton pump inhibitors and antacids) will damage the body's ability to take in B12 because bound B12 cannot progress to the next step in the chain of events.  It will be passed through the body in fecal material.

Intrinsic Factor is secreted in the stomach.  This special chemical's job is to bind to the newly freed B12 and carry it through the wall of the small intestine and into the blood stream.  If there is insufficient intrinsic factor, B12 will not be able to progress to the next step in the chain of events.  It will be passed through the body in fecal material.

Once carried into the bloodstream, B12 is carried to the liver where it is stored until it is needed.  The liver can store 3-5 years worth of B12 before it runs out completely.  If B12 is not carried into the bloodstream in the small intestine, it will be passed through the body in fecal material.

Because B12 is involved in many, many vitally important chemical reactions within the body, it can be lifesaving to diagnose a problem and treat it asap.

Patients who have trouble absorbing B12 are:

• The elderly. 
• Anyone taking long term preparations to lower stomach acidity.
• Those who have had stomach reduction surgery.
• Those with pernicious anemia - an autoimmune condition in which the immune system attacks the cells that make intrinsic factor.
• Those with Sjogren's Syndrome and accompanying problems with the glands that either secrete stomach acid or intrinsic factor.
• Those with digestive problems which include the small intestine.

Some patients have luck using oral B12 supplements at extremely high doses, however because of the danger of permanent damage, injection therapy is usually started to be sure the patient receives enough B12. Sublingual preparations are often effective and are relatively inexpensive.  There is currently a B12 nose spray that is also quite effective, but also prohibitively expensive and not covered by insurance, so not often utilized.

B12 injections used to be given only in the muscle (IM) however, giving injections subcutaneously can be just as effective and much easier to accomplish.  There is some danger of tissue problems with subQ injections, but many find the slower absorption of SubQ injections to be easier on their systems.  

B12 injections are usually begun promptly upon diagnosis.

A loading dose is given daily, then weekly, then usually monthly, depending upon the patient's ability to store and use it.  Some patients do fine on monthly doses, but others who have more profound problems with absorption may need weekly doses.  

Good-bye Gentleman Andy Griffith

Going a little off topic, I want to mention the life and work of beloved actor and gentleman, Andy Griffith who passed away just days ago.

Mr. Griffith was best known for two roles that gave immense pleasure to people all over the world.  Although I enjoyed his character Ben Matlock in the 1980's, my favorite of the two will forever be his role as Andy Taylor.

Andy Taylor actually helped shape who I am as a person and how I try to treat people.  I didn't have any good role models while growing up... nobody that made me stop and think "This is the kind of person I want to try to be like."  But there was Andy on TV every day when I came home from school.  I saw his gentleness and good humor and the way he valued everyone around him and I did think "This is how I want to be."  It was impossible not to like him. 

It's true that the words he spoke were written for him by the hand of someone else, but it was the way he said those words that made the difference.  Andy Griffith said Andy Taylor was nicer than he was, but he made the role of Andy Taylor that of a gentleman whom everyone wanted for a father, friend and neighbor.  Myself included.

Mr. Griffith, you are sure gonna be missed. 

I never got the opportunity to meet you, but like millions of your fans throughout the world, I adopted you as a "friend" just the same.  Your caring heart and cheerful relaxed attitude will not be forgotten by this devoted fan. 

Thank you so much for your gifts to the world.  For although you saw what you did as entertainment, there were some of us growing up in difficult lives that looked at the way you did your job with smiles of admiration and appreciation.  You showed us that the country charm that was so much a part of who you were, was something to be valued.  That being rough and jaded in an industry that typically produces narcissism as freely as water flows, was not a given.   

The fact that you were buried on your beloved North Carolina farm makes perfect sense to me.  I understand how a piece of land can become so much a part of a person that it seems the natural place to want to be placed.  I hope I am someday similarly blessed.  

Thank you for the smiles you gave my family.  You will certainly never be forgotten...

Here is a Rascal Flatts song about Mayberry that somehow helps to sum up what so many of us from that era remember and think about The Andy Griffith Show.  Enjoy a taste of the past....

~Ellen

Migraine and B12 Status: What Your Doctor Doesn't Tell You

Think a little vitamin won't have any bearing on your Migraines?  You might be surprised at the right answer to this question...

Finding out I had a long standing B12 deficiency and correcting that issue was paramount to my chronic Migraine improvement.

This research points to the fact that identifying a B12 deficiency can be difficult.  Most doctors who think to test B12 will not know how to do it properly, and many patients with deficiency problems will be missed as a result.

B12 testing itself is insufficient.

1. To learn your B12 status, 3 tests must be performed.  B12 should be above 400 for neurological health.  Numbers below 400 result in neurologic damage which can be permanent if not caught and treated early.
2. Methylmalonic Acid.  This test may be high in B12 deficient states and is much more sensitive in reflecting the actual status of the patient.
3. Homocysteine.  This test can be high in B12 and Folic Acid deficiencies.  High homocysteine has been found in a larger percent of Migraineurs than control groups.  

If homocysteine and methylmalonic acid are both high, it is usually B12 deficiency, especially if B12 testing is below 400.  

If homocysteine alone is raised, this usually indicates a folic acid deficiency. 

In my case, I had been tested in the mid 1990's and even earlier.  Results of B12 testing came back in the 100's - a very good reason for me to be notified of a problem and treated.  Because I was not notified nor treated, it is very likely at this point, that my damage is not going to improve.  The numbness in hands and feet as well as other areas have not gone away in several years of supplementation.  My cognition definitely improved, but I will likely always have problems I have largely learned to work around, but nevertheless am discouraged by.  

Research showed deficiency led to decreased brain size and other complications.  B12 deficiency is often seen in the elderly and mis-identified as dementia.  Sad, since this condition is very treatable.  

Next, learn why we can become deficient in B12 and how to treat it...

Source: C.C. Tangney, PhD; N.T. Aggarwal, MD; H. Li, MS; R.S. Wilson, PhD; C. DeCarli, MD; D.A. Evans, MD and M.C. Morris, ScD. "Vitamin B12, cognition, and brain MRI measures; A cross-sectional examination." The journal Neurology. Copyright © 2011 by AAN Enterprises, Inc.

Persistent Frequent Nausea and Migraine

Today I want to share an audio cast by a remarkable headache specialist named Dr. Richard Lipton.  This podcast discusses persistent frequent nausea and Migraine and details some fascinating Migraine and nausea facts and implications for Migraineurs and the doctors who treat them.

For example, Dr Lipton remarks that the rate of progression from episodic to chronic Migraine in those patients with persistent nausea was unexpectedly high, suggesting that the symptom of persistent nausea may contribute to, or be associated with Migraine disease progression.

Dr. Lipton discusses Persistent Frequent Nausea and Migraine on Neurology Reviews

Dr. Richard Lipton is one of those rare physicians who really "gets it" when we're talking Migraine.  Dr. Lipton is the Chair of Neurology at the Albert Einstein College of Medicine in the Bronx, New York.  I've met him a couple of times at national headache conferences and have had the opportunity to hear him lecture on multiple subjects. 

Source: Neurology Reviews