Fortune Cookies for Health Activism

This month's blog carnival was SO tough for me!  3 fortune cookies... a person could go anywhere with that!  There are fortune cookies with words of things foretold.  There are cookies with magical mysterious numbers.  Then there are cookies containing tasty tidbits of wisdom along with the sweet crisp cookie.

I have sayings that are repeated in our household and on our farm almost daily.  My family calls them "Ellen-isms" or "Mom-isms".  They are just as true for Health Activists as they are for my family and my students.  I'll share some of my top three below:

"Just because you can, doesn't mean you should"  As Health Activists and leaders we can choose to run our communities however we wish.  We can write what we want, say what we want how we want to say it.  There is nobody to stop us.  In fact, no matter how we choose to deal with community members and educational topics, there will be someone who will agree with us.  The wise Health Activist chooses to do what is right, taking into consideration these things and more:  Respect, honor, patience, compassion, empathy, fairness.

Ask yourself, "Is it workin' for ya?" If the answer is "no", then change something!  Don't get frustrated - Health Activists keep a close eye to their successes and failures. They constantly are looking for ways to improve what they're doing.  They work hard to get better with each thing they do.  They acknowledge that, as social media changes, so must the Health Activist change and grow.  A wise Health Activist doesn't get hung up on what worked last week or month, but always strives to be better than he/she was a week before.

"No matter how flat you make a pancake, it's still got two sides"   Be thorough.  When we deal with our community members, it's vital that we remember that even when we have a particular opinion about a topic, and it is part of our jobs to express that opinion... there is always another side.  A considerate Health Activist will take that into consideration when he/she writes and deals with other patients.  I even go so far as to say that it's a good idea to present both sides when appropriate.  Moreover, if I'm writing a bit of information, I always take time out when I'm finished to play devil's advocate and say to myself "Make me a liar". 

This is my post for the January Blog Carnival.

New Video Awareness Campaign: I am the Face of Thyroid Disease

January is Thyroid Awareness Month.  #IATFOTD is a new campaign to create awareness for thyroid diseases.

I usually like to sit here behind a desk in front of my keyboard where nobody can see me, plucking away at the keys where it doesn't matter what I look like, what I'm wearing or the fact that maybe I'm not feeling so hot or that my house is in mid-construction.  This time, I did something really unusual for me - I showed up in video to tell my thyroid story.

Stretching myself into other media was a goal I set for 2011.  My effort may not be exactly what I wanted, but I did it.  I met the challenge.  I accomplished something I didn't think I could - I stepped out of my box and let people see me when I didn't feel or look my best.  It wasn't for lack of trying - there's just *so much* a girl can some days. But hey, that's what it's like when you have chronic illness.  It isn't always pretty, or convenient.

Hopefully soon @ThyroidMary and @DearThyroid (Katie Schwartz) will add it to the handful of other videos already on the site I am the Face of Thyroid Disease.  I would love it if my friends here would place a few comments there when that happens.  In the meantime, here is my entry...   



Ellen S - Adventures in Thyroid Disease

20 Things About Alzheimer's You Might Not Know

When it comes to understanding Alzheimer's Disease (AD), it's clear we are in scientific infancy.  There are many points we do know though.  As I began my journey into researching Alzheimer's Disease there were many points that surprised me.  Do they surprise you?

1. Alzheimer's is the leading cause of dementia
2. Every 70 seconds someone will be diagnosed with AD
3. Over 5 million Americans live with AD today.
4. One in 8 citizens over the age of 65 have AD
5. AD is the 6th leading cause of death in the US, and the fastest growing
6. The incidence of death resulting from Alzheimer's grew 50% from 2000 to 2007
7. AD kills more than breast cancer and prostate cancer - - COMBINED
8. AD is the only disease in the top 10 causes of death in which we have no way to prevent it, treat it or slow its progression.
9. Landmark legislation was just signed into law that will lay the foundation for a new nationwide Alzheimer's Disease strategy  
10. Despite its prevalence, AD was finally included for the first time in the federal government's report Healthy People 2020
11. If the cost of dementia care was a country ($604 Billion in 2010), it would be the 18th largest economy
12. By 2030 the cost of dementia care will raise by 85% - a conservative estimate.
13. 70% of costs are borne in Western Europe and North America
14. World Alzheimer's day is September 21, 2010, and Alzheimer's Disease Awareness Month is November.
15. After designating a National Alzheimer’s Disease Week in 1982, President Ronald Reagan helped to launch a national campaign against Alzheimer’s disease in 1983.  He later died of the disease in 2004.
16. More women than men have AD.  The lifetime risk for women is 1 in 5.  For men it is 1 in 10
17. Those with fewer years of education are at higher risk for AD
18. On autopsy, less than half of AD patients were found to have AD without other dementias.
19. There is a genetic correlation with a small percentage of AD patients.
20. 4 diseases increase risk of AD: high blood pressure, heart disease, diabetes and stroke

It's clear that Alzheimer's Disease impacts us all - either individually or societally.  I hope you'll take a moment out to share this in your communities.  I'd really love to hear if they have anything to add!

Tongue Piercings - a Bacterial and Inflammatory Nightmare

As autoimmune patients, we know that inflammation is our enemy.  We should try to avoid anything that can cause inflammation, when we can.  Any reason to make our immune systems work harder is not usually a good thing, especially bacteria.  The same can be said for other health conditions such as chronic pain, fibromyalgia or Migraine where increased inflammation may play a roll.  So, what about tongue piercings?

I'm 46, but I have 2 kids and live near 2 colleges, so the idea of piercing body parts isn't exactly new.  Really, I'm okay with it so long as the piercings are clean and healthy, and not completely *in my face*.  I saw someone once with their lips laced shut.  That was too much even for my comparatively progressive attitude I'm afraid.  :)  But I digress...

One of those piercings that has bothered me a little more than most others, is the tongue.  This comes completely from a health standpoint.  I couldn't help but wonder about tongue-piercing facts.  Even though I expected to find some negatives (after all, you just poked a hole through a very important muscle) I admit I was surprised at the information I found...

Bacteria counts skyrocketed in those with tongue piercings, with about 80 species found to be common among those studied.  Biofilms are a coating of bacteria that cover both the jewelry but also the pierced channel.  Depending on the type of metal or plastic used some of the prevalent strains included staph and haemophilus influenza - very dangerous to have in your mouth.  (Kiss anyone?)

Receding gums were much more prevalent in those with tongue piercings (29% in one study).  One dentist stated that nearly all her patients with tongue rings come in at one time or other with gum infections or tooth trauma.  Chipped teeth are common.  I found at least one mention of a death as a result of secondary infection resulting from tongue piercing.

The ADA states that there are other things to consider as well:

• increased salivation aka drool.  This may bother others much more than the person with the piercing however. 
• gingival injury
• damage to previous dental work - $$
• interference with speech, chewing or swallowing
• formation of scar tissue
• development of metal hypersensitivities/allergies - this becomes very inconvenient if you need a pin in your leg or other implant
• "fiddling" with the jewelry can increase the chance of infection
• potential aspiration of the jewelry if it comes loose
• jewelry can obscure other problems in the mouth/face that may then evade detection
• risk of endocarditis, tetanus, localized tuberculosis, hepatititis B, C, D, and G and transmission of those diseases to others  

On the other hand, despite these findings and warnings, a study concluded that although biofilms may be worse in those with piercings - especially stainless steel - it did not appear to cause increased infections in the research subjects.  Were they more careful?  Hmm...  A dentist - Dr Denek - suggests that those with pierced tongues should leave the posts alone and not handle them to prevent the transfer of bacteria from hands onto the jewelry and into the mouth.

Dr Oz's website mentions the cost of tongue piercings.  What may seem like a small investment initially may indeed be a very costly way to express yourself, both in terms of your health but also in cold hard cash.  Something else to consider when considering tongue piercing.

Again, as autoimmune patients, we want to avoid inflammation whenever and wherever we can.  I'm wondering how many autoimmunies have tongue piercings or other piercings that may be causing them additional and needless inflammatory problems?  Would you still consider piercing your tongue after reading the risks? 

Have you ever kissed someone with a tongue ring and now think you will have nightmares of the bacteria you likely swallowed?



Additional sources:  
US News and World Report
medpage today

Part 2: The Public - Thyroid Radiation Treatment Collateral Damage

My story of RAI thyroid ablation isn’t so easy to tell.  It’s hard because it involves admitting that I did some things wrong.  It’s important because as conscientious as I am, I know I’m not the only one who has made mistakes with the treatment, or to whom mistakes were made…

To read part 1 of this series, see this link: http://bit.ly/fyaZjV

Before RAI

It took years to finally get my diagnosis.  I was then treated by an endocrinologist who was less than enthusiastic to be treating patients in my town once a month.  I later learned that the ATD (Anti-thyroid drug) treatment I got was not appropriate and was possibly one of the reasons it did not work.  Instead of getting better and staying better, I got better then I got worse.  ATD’s are designed to be taken multiple doses each day.  Labs should be taken to monitor thyroid levels throughout treatment, with an eye on optimal levels in which the patient is feeling their best.  For me, this didn’t happen.

Eventually, I changed doctors and was encouraged to do what my endocrinologist should have done from the start – find out which autoimmune disease I had.  I was told it was likely Graves’ Disease, and my uptake scan showed extremely increased uptake which is one of the hallmark symptoms of the disease.  I had never had antibody levels drawn though, which would have been a much more accurate diagnostic tool.  I know better now, but back then I didn’t know any of this.

The Decision

After my uptake showed Graves’ Disease, I was told I needed to do something.  I could go back on ATD’s, choose surgery or radiation.  I remembered the scars on the necks of 2 friends from their surgeries, and I was vain – I didn’t want another surgery, and I didn’t want another scar, especially one that made me look like my neck had been slit.  I was told it was safer than surgery, resulted in the same outcome – a cure – and that it just didn’t involve a knife.  When he put it that way, I was all for the ablation, and the sooner the better.  I was desperate to feel better.  I didn’t know the ATD treatment had not been appropriate, and I thought the RAI was going to cure me.  I enthusiastically agreed to the RAI, and it was scheduled for the next day.

The Treatment

When I arrived for treatment, I was seated on a table and the process was explained to me.  I was told a few things to avoid.  I asked several questions – what about my husband?  What about my children?  Was there any danger to them?  I was told there was no danger to them.  Would it make me sicker?  No, it was going to cure my problem.

Radiation aftermath

I ate dinner out with my husband, then we went home and we joked about turning off the lights and seeing mom glow in the dark.  I carried on as usual.  I slept next to my husband.  I hugged and kissed my children, and yes I even laid in bed to read to them.  I did laundry as normal, washed dishes together as normal.  I bathed as normal.  Everything I did was normal as the radiation in my body created a radiation “fog” around me, touching everything within many yards, then eventually feet of me.  I washed my kids’ clothes and likely contaminated them with mine.  I bathed in the same tub and likely contaminated them.  The list of ways I likely contaminated my family is too long for me to consider without serious depression setting in.

I should have been warned to keep personal activities to myself for at least a month.  I should have been told about the radiation fog that would touch everything I touched.  I should have been told to stay somewhere else (Where do you stay when you’re spreading radiation everywhere??).  They quarantine animals who go thru this procedure, why not people??!

I should have been warned to drink more.  At the time it was very difficult for me to stay hydrated and I had suffered many kidney stones as a result.  I had Migraines, but they began to become more frequent and debilitating.  Others I talked to later told me they were warned of memory problems after RAI, as well as other gland failures such as tear and saliva glands.  I did become dry, and my cognition became very impaired.  It was assumed that my cognition problems were a result of my Migraine medicines, but I was never able to remember things well after that, even after the medicines were stopped.  Nobody mentioned Sjogren’s Syndrome to me at the time.  I had earlier dryness issues, but I should have been warned that I needed to pay special attention to my hydration so that my glands wouldn’t be damaged.  They are damaged today, but no one can say which was the chicken and which was the egg.

One day, as I was sitting eating a piece of boneless chicken, I had a horrible pain in my throat.  It literally knocked me to the ground.  I couldn’t eat or drink anything else for over a month.  I saw my doctor who diagnosed me with RAI induced thyroiditis.   There was concern that it had damaged my esophagus, but because of the thyroiditis, there was no way to test it to find out until the inflammation subsided.  I used chloraseptic by the bottle because my throat and esophagus was so raw.  I lived off Ensure for several weeks, and it was months before I was eating solid food normally again.  Over the course of my entire illness, this was the first time I had noticed thyroid inflammation, but you could see the outline of my gland plainly on my neck.  I didn’t know it at the time, but that incident marked the first “lightning strikes” of neuralgia in my neck and face that still plagues me today.

I did begin to feel better, but then my breasts began to bleed.  I got concerned and saw my OB/GYN who drew blood.  He was concerned about the RAI procedure may have caused the bleeding and said they would call me if there was anything to worry about.  The paperwork was misplaced, and more than a month later I received a frantic call from the nurse telling me I needed to go to the pharmacy immediately for a prescription.  She apologized for misplacing my results, and she told me they were far from normal.  Since the blood had been drawn many weeks ago, they were extremely concerned for me.  I began taking the thyroid supplement, and thus began my metabolic rollercoaster ride.   

A few years later, my daughter began showing signs of thyroid disease.  I asked for her to be tested, and it resulted in a diagnosis of Hashimoto’s Thyroiditis with a significantly high antibody count.  My son eventually got the same diagnosis, and even our dog was diagnosed with thyroid dysfunction, as was one of our horses.  My husband himself remains borderline, but I suspect he will require thyroid supplementation soon as well.

How many thyroid patients in a single household can be considered normal??

It’s not difficult to guess that with the high dose of radiation I received, my habits after treatment exposed everyone in my household to my radiation.  There is no way to know if the radiation I spread to my family and pets caused their own thyroid problems.  I have asked my doctors but nobody can tell me anything for sure.  I worry about my husband who already has a very strong  family history of cancer.  I worry about myself as well – what other damage occurred that didn’t need to happen at all?

What have I done...?

Fecal Transplants May Be a Cure For Pre-diabetes

Okay Health Activists, admit it:  there is a definite "ick factor" when you read the title to this post.  I'll bet half of you probably clicked this link just because of curiosity :)

The fact is, insulin resistance/pre-diabetes is one of the fastest growing problems in our nation right now.   Some research I ran into a little while ago may point the direction to a potential treatment, or even a cure for this awful problem.  However, the "cure" may seem even more distasteful than the disease.

Fecal transplants were done in animals and the results were no less than phenomenal - their insulin resistance (sensitivity of the body to insulin) increased substantially when the animals were transplanted with fecal material from healthy non-insulin resistant animals.

Why?  They're not really sure yet.  Could it be transplanted bacteria are missing in the guts of pre-diabetic patients?  If so, why?  The study leaves many questions.

When they tried the transplants on humans, the results were very similar, leading researchers to postulate that they may be onto something really important where diabetes, pre-diabetes and insulin resistance is concerned.  The human subjects who were transplanted with their own fecal samples did not improve their condition.

Much more information is available by clicking onto the link.

In nature, animal young often eat the feces of their parents.  Although humans may look on the practice as extremely icky, it is vital for many of these animals because this is how their guts are populated with the helpful bacteria needed to survive.  The practice lasts only until the animal's gut is properly populated, then it seems to stop.



Photo copyright 2006 Ellen Schnakenberg  ~ES Storms in Africa - black Arabian colt

When the human or animal body loses its sensitivity to insulin, the pancreas must make increasing amounts of the hormone to metabolize sugars that we eat.  Very serious damage often occurs as a result of high levels of sugar and insulin.  Eventually this condition often turns into full blown Type 2 diabetes.  Fortunately the condition can often be treated very simply with diet and exercise.  However, there is definitely a genetic component to the condition as well.  You do not have to be overweight and sedentary to have insulin resistance or Type 2 diabetes, and if genetics is part of the mix, diet and exercise may not be enough to keep you from becoming insulin dependent. 

Those of us with chronic illness including autoimmunity and chronic pain conditions like Migraine are often prone to a more sedentary lifestyle.  Where once we were active, our illnesses have left us sitting on the sidelines.  Additionally, our treatments often result in increased weight, compounding the risks for pre-diabetes.  The chance that something as simple as a fecal transplant may be effective is, although quite distasteful as it may seem, still good news for us.  Any treatment beats the health risks of diabetes.

I bring you this news because I think it's useful to our communities to let people know that pre-diabetes is a significant risk for us.  I also bring this news because I want to be sure that everyone knows that there does seem to be some hope for us as well.

That said, not every pre-diabetic person is suffering the condition because of chronic illness.  Some simply are unmotivated to control their health properly, leaving me to wonder... if they were told to get moving and lose weight or they'd be treated by a fecal transplant, do you think they would be more motivated to lose weight and get active to prevent the disease in the first place?  Or do you think they would remain unmotivated despite the thought?   

The Public - Thyroid Radiation Treatment Collateral Damage Part 1

The hotel linens you slept on may have been contaminated with radiation.  The person who sat next to you on your last bus ride may have been so radioactive that they set off alarms.  The person in the next table at the restaurant you ate at last may have been emitting and contaminating the area with radiation.

How do I know?

I was one of them who may have contaminated you.

Autoimmune Disease is the #2 reason for illness in our country.  Autoimmune Thyroid Disease is one of the most common autoimmune diseases in today's world.  Hashimoto's Thyroiditis causes low thyroid levels and is more common than Graves' Disease which causes high thyroid levels.  Thyroid cancer is also a common type of cancer.  What do these three things have in common?

Treatment with Radioactive I-131.

I-131 is radioactive iodine.  In the normal body, iodine is used mainly by the thyroid where it is converted into thyroid hormones which control the metabolism of each and every single cell in your body.  Patients are led to a small lead protected room, where a tech wearing protective gear holds a small lead box containing the I-131.  The patient swallows a small capsule(s).  The iodine races to the bloodstream where it spends time at each and every one of your organs and tissues before eventually being *sucked up* by the thyroid.  While in the body, the I-131 irradiates everything it comes near.  When it settles in the thyroid it does most of its damage by concentrating there and irradiating the gland and killing it.  This is called I-131 thyroid ablation. 

The entire process takes months.  

The treatment is completely invisible.  It is said to be "harmless".  It is said to "cure" thyroid dysfunction problems like Graves' and (rarely) Hashi's, as well as thyroid cancer.  It doesn't actually even "cure" thyroid dysfunction, but that's for another post.

This article finally shines light on the dangers of this treatment to the public. The thyroid community has talked semi-openly about this for years.  Finally, someone is listening...

In the veterinary world, animals who undergo I-131 treatment are quarantined for a month or more to be sure they will not contaminate the public or their surroundings.  Great care is taken to assure that no one is harmed while the animals are dangerously radioactive.

Not so in the human world. 

In our world, patients are given the I-131 and immediately go on about their daily business.  Although patients may be warned not to vomit, and to *take care* while using the bathroom, no one oversees what patients actually DO during the time they are emitting dangerous radioactivity.

The article cites a couple of recorded scenarios:

*  One notable patient rode the bus the day of treatment, setting off radiation detectors in New York's Lincoln Tunnel.

*  A survey was taken of I-131 cancer patients that noted: 7% went to hotels with their doctor's knowledge.  The article goes on to tell the story of workers from a nuclear plant who stayed at a hotel after a patient's room laundry was done by staff, spreading the contamination.  They were so contaminated after sleeping in the sheets etc that they set off alarms at their nuclear facility.  (If it were not for the fact these people worked in a facility equipped with radiation detection devices, no one would ever have known.)

*  25% were never told how to keep from exposing pregnant women and children from their radiation.  The survey noted 56 cases where bathrooms or bedrooms were shared by pregnant women or children.  Neither this nor the dangers of "other close contact" was explained to them.

* Maryland and Massachusetts are two states that have stated problems with radiation contaminated trash setting off alarms resulting in exposure to workers when they were forced to unload the trucks to search for the source.

Beyond the article, I have been told personal stories of patients who were given notes to board airplanes and other public transportation so patients could return home, begging the question - what about the rest of the passengers who spend hours with these patients in close quarters, perhaps being unwittingly contaminated by mere proximity, or body fluids such as sweat or those spread by a cough or sneeze.  What about the people who will ride after the person has long gone home?

What about those patients who go to work the next day exposing everyone with whom they come into contact, who they may or may not even know?  What if one is in the earliest most susceptible period of pregnancy?  What about the baby in the grocery cart ahead of them in the line at the store?  What about the clothes they try on at the department store and don't buy?

Tomorrow: Part 2 - My Personal Story

Views: 327

Linkaholics Anonymous

My name is Ellen, and I'm a Linkaholic.

If there was a 12 step program for people like me I'd be the captain of the team, lol. I love to provide links to everything I read.  I can be obnoxious with them.  I was once nearly kicked out of a community because I provided them with every post.  I have since learned to tone them down a bit, but occasionally I fall off the wagon :)

The question is... would you rather have your communities provide links or not?  Do you like the little colored text that tells you "All you have to do is click me and I'll tell you everything you want to know about this subject"?  ...or do they annoy you?

The fact is, most links are never clicked.  I monitor my links because I'm trying to be the best Health Activist I can be.  This means I want to know what people like to read and learn about.  I average about 20 hits for every link inside my text that is actually clicked - guestimating.

Why?  Some of the people who follow me regularly and read nearly everything I write have told me they don't click the links BECAUSE they are there.  They assume if I backed myself up with them there for anyone to read, then I obviously am giving them good information.  This leads me to wonder what would happen if I backed those links with spammy garbage. 

I have also been told that I am a very thorough writer, so there's no need for them to research further.  I do really try to work at this, but the truth is, unless one writes a book it's practically impossible to be thorough enough on any subject.  I put those links there so readers can continue to research beyond what I've told them, and I really do hope that they are interested enough to click one or two.

I have recently joined another new group that chooses not to put any links on blog posts etc.  Instead there is a notation at the bottom telling the reader that sources are available upon request.  I have my own opinions about this, but I'm wondering what other Health Activists have to say on the subject.

What do you think about links within text?  Do you use them, or do you have another method of sourcing information and encouraging readers to dig deeper?

Health Activist For Pay

I am often asked about working at home as a paid Health Activist. Most often it is writers and patients who ask how they can get these jobs too.

So you want to know how it happens?  In my experience it's much more about what you're doing before any job becomes available that is so important.  I'll try to sum it up in a few words:

* Passionate and positive, but fair and honest
* Patience enough to work on your own for the good of the community before you're noticed
* Gentleness to handle difficult situations with tact and compassion
* Time throughout the day to spend helping whoever needs it the most
* Tireless volunteering, day and night - whenever its needed, for however long its necessary
* having a good rapport with other patients
* having a good history of helping others within your groups, going beyond the norm when necessary
* having a decent basic grasp of technology and an eagerness to learn more
* understanding how groups and patients work together and a background in facilitating that
* having a recognizable voice in the communities of your choice.
* the ability to communicate well within very wide parameters - from the newly diagnosed to physicians and research articles.
* Willingness to over-share personal information one wouldn't normally consider telling someone you didn't know really well, just to help other patients.
* Always, always putting patients and community members first.

Aaah, there are more.  Maybe one of my bosses will chime in and tell you more of what they look for when they consider hiring someone new to join their fabulous teams...

Here's how things happened for me:

My Health Activist story is much more about what I volunteer doing than what I am paid for writing and doing.  I started out as most do - getting involved in a group forum setting because I had health issues that doctors didn't seem to be able to quite figure out.  I figured if doctors couldn't put 2 + 2 together, then maybe other patients might have a clue.  I was very anti-internet at the time, so I started asking questions.  I learned how to do internet searches and find the information that not only patients needed, but doctors wanted them to have.  I became educated very quickly and my health started getting better with a few changes I made that nobody else had ever suggested before.  I wanted other patients like me to know that patients could help them too, so I began contributing answers to questions.

I started very slow and very small.  Very quickly people began writing to me though to tell me how something little I'd said changed them, and I was hooked.  I became very active online in groups and forums and I was very passionate about helping people.  Even when I didn't have the answer they needed, I had the ability to either figure it out through research, or the connections to get them hooked up with other patients and doctors who did have that knowledge.  I became a linkaholic.  I linked to everything so patients would see that I wasn't just talking... I provided proof they could take to their doctors.

I wasn't looking for a job.  I thought that, because I couldn't leave my home I was unemployable.  Eventually, I was contacted through one of the forums in which I participated about my first job.  I was lucky enough to be one of the first hired for a brand new website that hadn't yet launched called WEGO Health.  I was asked to do all kinds of projects and help the website settle into its current position as the go-to place for Health Activists. I love WEGO Health and the part I played in growing it to the place where it is now - a leader in health based social media.

Along the way I've seen some fabulous patient advocates, and a couple have really stuck out in my mind.  I keep a very short list of these patients by my side, and occasionally find an opportunity or two to tell others about their terrific work.  When a job opened up at WEGO Health, I recommended one of these for the position, encouraged her to apply, and was so thrilled when she was chosen.  Now she is one of the most active advocates on the site and sure giving me a run for my money!

My second job came as a result of working for WEGO Health.  After a WEGO Health insight group I was contacted by the brand new site that had been asking the questions in the group.  They were looking for knowledgeable patients to help them build and grow their site too.  I was more than enthusiastic, I was downright excited at the potential to once again get involved with a new site who was so incredibly patient focused.  I am now an active Moderator and blogger for Migraine.com.

Are you hoping to find an online job as a Health Activist too?  What are some of the questions you'd love to have answers to?

Are you already a paid Health Activisit?  What other tips and tricks could you offer other HA's in locating and landing new careers helping others?

Know Thy Lab Tests

It happened again.

After a 3 1/2 hr drive, an appointment and a blood draw in which they took 9 tubes of blood... AND I reminded the tech to protect one of the samples from light... I got a call from the clinic that I needed to come back for a re-draw on the light protected sample because it wasn't frozen.

Oy.

When I got there, none of the techs knew the sample needed to be immediately protected from light, or even how to accomplish that (tin foil around the tube).  They were very nice, but had to take quite a bit of time to call the lab for confirmation of the need for light protection and freezing due to my gentle persistence that their written instructions for the test mistakenly did not include this information.

This has happened to me too many times to begin to count.  One time I had to have blood drawn for the same test 3 different times during a single afternoon because the techs didn't believe me that the tubes needed to be handled specially.

So here's how most labs work:

The doctor orders a test.  The lab receives the order.  They must look up the directions and supplies for each test.  Common tests are memorized, but less common tests require the tech to go to specially prepared information created by the lab where the blood work will be sent.  Most labs have a printed manual with these instructions, but they can also sometimes go online to the lab site for instructions as well.

Blood is drawn in a special tube according to the instructions and the specimen is prepared.  If it is to be shipped it will often be cooled or frozen prior to being boxed up for a courier to get it started on its journey to the main lab where the test will be performed.

When the lab receives the sample they may check it for compliance to instructions.  For example: if instructions require it to be frozen and it's thawed, it will be flagged as discarded.  The drawing lab will be notified and patients recalled for another draw.

Here's where it gets dicey:

Labs must update their instructions frequently... and appropriately.  They MUST READ them before drawing the blood or the test may not be accurate.  They may try to fudge if they've goofed because they don't want to ask you to come back. FUDGING A TEST WILL RESULT IN INACCURATE RESULTS AND THE POTENTIAL FOR INAPPROPRIATE DIAGNOSIS OR TREATMENT!!

An example is the test we were re-running.  When the techs later go to box up the sample and notice it is supposed to be protected from light they will go ahead and put it in an amber tube for shipment.  This may be an hour after the draw.  Samples that say "immediately protect from light" mean just that - IMMEDIATELY.  They are ultra-sensitive to uv light and degrade very quickly.  Most labs are filled with uv light from the fluorescent lights placed all over the ceiling.   You or the lab the sample is being shipped to will not be aware this has happened and your results will not be accurate nor discarded.

Sometimes labs will notice a problem, discard a sample and simply not call you back in for a redraw.  We have even paid for tests that were discarded and never run... something I would never have known had I not checked up on them when I didn't receive the results I expected.

Sometimes the test will be done and a notation will be added that the results are not to be considered accurate.  These notations are rarely noticed by doctors and nurses who are in a hurry and only looking for actual test results.  It is unlikely you will ever know this has happened unless you are getting paper copies of your original lab reports.

It's up to patients to find out the requirements for the tests they are having run.  Most don't even consider doing this, but typing a quick search for the name of your test plus the search term "lab requirements" or "lab instructions" will often yield helpful instructions.

A proactive patient will observe the draw to be sure special instructions have been carefully followed.  A proactive patient will also often remind the lab tech before the draw that special instructions are necessary for the sensitive test, then watch to be sure they are followed to the letter.  If you know a special instruction needs to be followed that isn't being followed, ask the tech to see the written instructions for the test.  If you believe them to be wrong (and sometimes they really are!) ask them to phone the lab and speak to them personally for confirmation.  They will be aggravated, but if you are right and they are wrong, you have just saved yourself time, money, a little pain and some blood.

A good patient will take the time to talk to and thank their lab tech for putting up with you telling them their job.  Secretly this same good patient will also know that the test was run appropriately and they are getting proper treatment or diagnosis.

I wish I could say that mistakes like these don't happen very frequently.  With common tests, mistakes like these really are rare.  With less common tests they can happen very frequently.

All labs are not created equal, and patients need to be sure the lab they're using has a good reputation for doing things correctly.  The only way you'll know for sure is to stay on top of things yourself.  You care about your health and your health care dollars, so follow through.  Be thorough, at least as thorough as you'd expect your doctor or nurses to be on your behalf.  Please don't expect anyone else to care more about you than you do.

Please be Neat, do not Delete

If you create, then choose to vacate... Please be neat and do NOT delete.

Something frustrating happened this week.  A very helpful Health Activist of my acquaintance chose to stop their Health Activism activities.  This wasn't something they really wanted to give up, but stated they felt they needed to for personal reasons.  Instead of leaving all the wonderful, helpful information and supportive posts they had spent many months creating and responding to, they instead chose to delete everything... lock, stock and barrel across many communities.  Gone - forever.  No opportunity to save that helpful information and those terrific links was given.  One minute it was there, the next minute *poof* it was gone.   I think in this case there were extenuating circumstances, but most often there are not.

Some groups save your conversations and discussions even if you opt to discontinue your membership.  Others allow authors to remove their posts.  Still others (like NING) allow you to choose to leave a community or group, but when you delete your profile all your posts are automatically deleted as well.

Do you know what your group's policies are re: the status of your contributions when you decide to leave?

I have been a member of many communities.  I am a Health Activist because I want to help other patients so they can benefit from my trial and error. Because my whole reason for putting my experiences out there is to help others, only once (a single post) have I ever gone to the trouble of deleting my profile or the content I have added to those communities.  Why?  My only concern is to get that important information "out there" for patients to find.  I don't much care whose user name is on it or if anyone knows who is sharing it.  I don't own that information and I don't feel it's mine to take away from patients because I have chosen to move on.

Additionally, it is so discouraging to me as a community leader to find that sharing information is not always the primary reason people become Health Activists.  I don't think this was necessarily the motivation of the person who disappointed me this week, but it did bring this general question to mind again as this has happened in the past as well, on other boards with other advocates. From time to time I see content deleted when someone chooses to move on.  Sometimes they simply don't realize what deleting their content does to a community... other times (like this week) they do.  Sadly, there are times I can't help but wonder what their motivations are for...

* becoming an activist in the first place
* taking time to physically remove valuable and helpful content they took the time to create and others took the time to reply to.

For those who aren't aware... as community leaders we invest immense amounts of time in those we work with.  For me personally, I am never bothered when someone has gotten what they joined for and either bows out or simply fades into obscurity again.  This truly is the course most patients take.  But I feel such discouragement (and I admit selfishly) some real betrayal when someone I engaged with and invested a great deal over a long period of time chooses not just to leave gracefully, but to take all that time to physically delete information.  Sometimes I know they just don't realize the path of destruction this causes, but other times they do, yet choose to do it anyway.

Perhaps I am just not "getting it"?  Is there an unexplored angle that anyone could share with me that might explain why this happens?  I admit being very short-sighted where this is concerned because I just can't personally imagine removing something helpful from the hands of patients seeking it.

Are there ways you choose to help protect content created within your communities?  Do you have any suggestions for other Health Activists how they can prevent this from happening while still allowing patients to retain ownership of their posts and comments?