Wednesday, December 29, 2010

My top 10 for 2010

Want to know how to turn me - a perfectly good Health Activist - into a head-spinning Linda Blair movie character? Ask me to come up with a list of only 10 favorite things for an entire year.  It was a good year for me, so this is tough.  In order to narrow things down a bit I decided to break it down to my 10 favorite blog posts for the year.  If you didn't get a chance to check them out earlier, here's a second chance...

Health Activists call to action: Fosamax, broken bones and Wolff's Law and Health Activists call to action: Fosamax, broken bones and Wolff's ...Part 1 explains how our bones can become weak, and Part 2 introduces a little-known scientific law that explains the easiest non-drug way to make them strong!

Hot topic! Now we know why vitamin D is crucial to the immune system These recent research findings help explain some of the hidden mysteries of the immune system.

Have a neurological disorder? Please consider brain donation - a fi... The brain is a vital organ in desperately short supply. You could help cure neurological disease - learn how, then share this post...

Learn if you are a victim of a major health information breach I found some little-known statistics that are.... shocking!

Health Activists and the famous brown M & M clause  What does a famous rock band have in common with Health Activists?

Famous people affected by autoimmune disease The list of celebs facing autoimmune diseases is huge.  Is one of your favorites listed?

My series on autoimmunity and Migraine:
Autoimmune Health Activists talk Migraine - Part 1
Part 2 - Autoimmune Health Activists talk Migraine
Migraine triggers for the autoimmune patient
Part 3 - Autoimmune Health Activists talk Migraine
Part 4 - Autoimmune Health Activists talk Migraine
Part 5 - Autoimmune Health Activists talk Migraine

Dinner with a world record holder A photo from a once in a lifetime opportunity to thank another Health Activist... in real life.

A physician's 10 commandments Written from the patient's perspective, this generated quite a few conversations.

Was Hitler more ethical than you? The only thing more shocking to Health Activists than the title is the answer.

This post is my entry in the WEGO Health blog carnival for December

Comment by Janeen on December 31, 2010 at 8:31am
This is a great post Ellen!  Thanks so much for the 2010 recap.  It was fun to go to back and say "I remember that one".  I may not have commented on them all, but I read them all and learned from them all.  I can't wait to read your 2011 posts.  Have a wonderful New Year my friend!
Comment by Amy K on January 1, 2011 at 2:37pm
Thank you so much for sharing your top ten with us Ellen. You have so many incredible posts, I can only imagine how tough it was to pick! I look forward to catching up on any of the posts I may have missed.

Thank you Ellen!

Thursday, December 16, 2010

ALERT: Pain and Suicide Attempts in the Hospital or Emergency Setting

The holidays bring with it the added risk of suicide attempts for an increased number of people.  Suicide deaths rise during the holiday season, and this is a fact of which we may all be aware, but tend not to recognize until an attempt is made by someone we care about.

It's widely recognized that suicide is a risk for depressed and psychiatric patients.  What is not recognized and probably highly under-reported is that it is a serious risk for severe and chronic pain patients, outside of a psychiatric diagnosis or setting.

An article in US Department of Health and Human Services mentions a Joint Commission alert telling doctors that it is not just psychiatric patients that commit suicide in the hospital setting, but those in pain as well.  The article states that of 827 (voluntarily reported) in-hospital suicides, a large number - 25% of them - were in non-psychiatric settings.

Making these non-psychiatric patients different are their presenting complaints and diagnosis.  The medical team concentrates on the physical aspects they can control - fever, hydration, etc - and miss important assessment of the patient's mental and emotional symptoms related to their distress.

Living with daily pain is a physical and mental battle. Patients with chronic pain can become exhausted, and feelings of hopelessness which begets desperation, begin to pervade.  If the pain becomes too severe, or if the patient sees no end to their pain, they often feel that life is unbearable because their past experience has taught them this fact.

Photo copyright 2008 Ellen Schnakenberg: starving horse 

They are trapped, and escape from pain becomes the focus of their thoughts, yet they may not talk about it.  If their pain remains undertreated - or they are denied the medication they need - they are at significant risk for suicide.  If their pain is severe enough, or their desperation is profound, these patients may not wait until they get home to attempt suicide.

The article also discusses the specific symptoms and signs someone in chronic pain may come to the hospital complaining of: "irritability, agitation, complaints of unrelenting pain, refusing visitors or medications and requesting early discharge, the commission noted. Dementia, chronic pain or illness, end-stage cancer, acute signs of depression and drug or alcohol intoxication may also heighten suicide risk."

Desperate people will find a way to do desperate things.

Caretakers, friends and family members of chronic pain patients need to be aware of the above signs and symptoms so they can alert doctors and remind them that they have reason to worry about their loved one.  Protect them by being sure your loved one is getting the pain relief and care that is needed.  Understand that pain DOES kill. Don't be afraid to seek a second opinion, or third or fourth if that's what's necessary.  These patients are not drug seeking addicts.  They are seeking relief from their tormentor - their pain.  If they are denied relief from this tormentor, many will find their own ways, leaving friends and family to pick up what they have left behind them...

Comment by Amy K on December 16, 2010 at 9:18pm
I can't wait to share this post in many different communities, particularly at Una Vita Bella my new network for those with chronic pain and mental health challenges. Pain is a major contributor to depression, suicidal thoughts, and suicide attempts, plain and simple and can't be ignored. Pain can kill, like you said.
I have shared this before, but the pain almost killed me as I was led to a suicide attempt myself after a diagnosis and extreme pain due to fibromyalgia. I am one of these people you talk about here and I am proof that it is a real issue.
I truly hope we can continue to reach others with this message and your post that reminds caretakers, professionals, activists and those suffering with pain themselves that awareness of this is so very important, literally vital.

Thank You Ellen! Feel free to post this yourself at Una Vita Bella - The Community as well. Also, would love to see this mentioned in the fibromyalgia group here, I can write a discucssion and link to it, if you would like?
Comment by Ellen S on December 17, 2010 at 11:30am
Amy - done!  If you can start a discussion about it, I think it's an important subject, especially in light of the fact that Fibromyalgia is so often misunderstood and simply not taken seriously, leaving patients to feel helpless and hopeless.  If you don't have a chance soon, I will try to step over there and write something too.  This is important stuff <3
Comment by Amy K on December 17, 2010 at 10:17pm
I'll make sure to post about it in the Fibromyalgia group and thank you so much for sharing it at Una Vita Bella!

Tuesday, December 14, 2010

Top 15 Holiday Tips for Thyroid Patients (and the Chronically Ill)

The holidays are a time of excitement, anticipation, and... stress, even when you're healthy! When we have a thyroid disorder, the holidays can pose a significant challenge for us, but some careful planning and preparation can result in a more pleasant time despite our disease.

In fact, this list could be used by almost anyone with a chronic illness!

When people think about thyroid disease, they most often think "weight gain". Thyroid disease is much, much more than a battle with weight gain. In fact, depending which type of thyroid disease you have, you may have trouble keeping your weight on instead of off.

Many tips may help us to be more comfortable and enjoy our holidays, but first it's wise to talk about some of the symptoms of thyroid disease that we need to keep in mind while thinking about optimizing our Holiday experience...

Some common symptoms of thyroid dysfunction include:

HypOthyroid (low thyroid levels)
* dry hair, skin, brittle nails, acne
* hair loss
* heart palpitations
* low blood pressure, fainting
* fatigue
* lowered body temperature, cold extremeties
* constipation
* blood sugar regulation difficulties
* Migraine, headaches - may become chronic and daily
* body aches and aching joints
* muscle spasms
* cognition difficulties
* memory difficulties
* weight gain
* menstrual irregularities
* depression (may be severe and long-lasting)
* goiter
* anemia
* increased inflammation
* medications are not cleared as quickly from the body

HypERthyroid (elevated thyroid levels)
* oily hair, thin skin and nails, acne
* hair loss
* rashes
* heart palpitations and feelings of anxiety or adrenaline/caffeine rush
* high or fluctuating blood pressure
* sleeplessness
* fatigue
* sweating, flushing, raised body temperature
* diarrhea
* reflux, heartburn, gastritis, malabsorption, vitamin deficiencies
* dehydration
* shaking, muscle twitches
* Migraine, headache - especially tension headache
* aching joints, bone pain
* frequent emotional highs and lows, lability - an emotional 'hair trigger'
* eyesight changes, bulging eyes
* goiter
* anemia
* medications may not work as well as before

Some general tips include:

1. See your doctor about 6-8 weeks prior to the beginning of your holiday celebrations. Blood will usually be drawn at that time, and if any problems in the labs shows up, this gives you time to correct the issues before you need to feel your very best. Don't forget to call your doctor's office one week to 10 days after the draw to get paper copies of your results for your records.

2. Plan ahead and have everything purchased in advance, so shopping trips may be kept to a minimum during the holiday rush. If you've made changes to your meds, remember this and plan accordingly.

3. Hair is often an issue for thyroid patients. If you want to get your hair done (permed, cut, colored etc) for the holidays, do so at least 2 weeks before your event. Remember that the more products used to alter your hair, the more potential there is for damage, so sometimes the best thing to do is nothing at all.

4. Plan to spend a week or two to decorate your home. Don't try to get it all done in a weekend. Ask for help. Even small children love to help decorate for such an exciting time. Concentrate on a single area if you're not feeling up to doing the whole house.

5. Address cards (or do your data entry of addresses) during the summer. Don't seal them, and you can enclose a short note in each card just before they're sent.

6. If you're having a rough season, don't feel bad about reusing last year's decorations the same way you did before. Don't get creative - it's okay. Your family will appreciate having your smiling presence so much that decorations and present purchases will not be missed.

7. Shop big. Don't buy 100 small gifts you will have to wrap and tag. Buy one special gift for each person instead. This will cut down on your work load and your loved ones won't have so much to deal with once they get home. Think of the gifts you enjoy the most when you get home - are they the little things, or the well thought-out special things?

8. Don't shop at all. Spend the entire year making gifts for loved ones. It lessens the burden in the fall/winter, and gives you something creative to do throughout the entire year. Gifts that are made this way are what create special memories, and they are cheaper on the pocketbook. Make your list a day or two after Christmas this year, then get started when you shop the after-Christmas sales for supplies. Make it special by creating your own tags that tell the recipient you thought of them every moment you worked on their gift.

9. Don't cook. Most large grocery stores will prepare your holiday meal for you - and even deliver it fresh. The cost is not usually as high as you might think, and it allows you time to focus on other things that might otherwise be skipped. Decorate and set the table, and that's it! If there are special items you want, ask if they will prepare them to your specifications or recipe. Most will happily do this. If not, consider paying a friend to do it for you. With so many families out of work, this may be a godsend to someone who doesn't know where they will be able to find the money to buy gifts for their family... or offer to purchase twice the food if they will fix it for you, then give them half for their dinner. Another option is plan a family potluck. You can even have a pre-planned menu and ask each family member to make something on the list.

10. Stay healthy. Keep the humidifier going, because you know your thyroid condition has altered your immune system and you're more likely to get sick. Wash hands regularly. Get vaccinated for the flu and pneumonia if your doctor suggests it. We frequently use a neti pot to kill any potential bad stuff - it's easy, convenient and dirt cheap (salt and water).

11. Get yourself into a sleep schedule. Wake up in the morning and try not to nap. Exercise a little during the day, and go to bed at a regular time at night. Turn the thermostat down a little each night to save energy, money, and trigger the sleep response in your body.

12. Dress in layers. You can guess the temperature of the places you'll be going, but you'll usually be wrong. Layers allows you to take off whatever is uncomfortable, and put it back on when you need it. Beign too hot or cold can trigger other health issues we don't need to deal with.

13. Check the stockpiles. Be sure you have enough medicines to get you through the holidays. Food, drink, blankets etc in case the power goes off etc.

14. Keep a short journal. If something goes wrong - a nasty Migraine, uncomfortable heart palps, etc... write it down. If something improves, that's just as important too! You'll need the information to tell your doctor after the holidays are over, but you'll not likely remember any details unless you've written them down.

15. Don't try to change it, live with it. Remember and accept that you are chronically ill. You are dealing with something no one else can understand. Don't expect them to. You understand, and that's okay. Others with thyroid disease understand too, and they can be helpful. Don't look for perfection this year, just happiness and joy wherever and however you can make it appear. The best memories frequently come from adversity and difficulties.

For other ideas how you can get through the holidays if you're vacationing away from home - These posts were written with Migraine in mind, but I think you'll find them helpful for nearly every chronic illness! See these helpful links:

Vacationing with Migraine- the down and dirty details

Vacationing with Migraine- printable quick tips

Comment by Janeen on December 14, 2010 at 4:25pm
These are wonderful tips Ellen!!  And you're right, I think many of them are good for other chronic illnesses and for those who are caregivers of those with chronic illnesses too.  I'm going to tweet and Facebook them.
Comment by Ellen S on December 14, 2010 at 6:03pm
Thank you so much Janeen!!  Did you see that Amy had some awesome holiday tips too?  'Tis the season for making tips lists!

Monday, December 13, 2010

Health Activist/Advocate Propaganda

Enthusiasm without science is propaganda.

I wrote last week about a class I took recently about ethics, called Is Hitler more ethical than you? The class itself was about how animal ethics apply to those involved in agriculture. I have applied what I learned to my Health Activism for a couple of posts I hope will inspire some conversation among us.

Our instructor said something that at once I both agreed and disagreed with: She said "I hate activists. Activists push their beliefs on others based on their feelings, not on science."

My first thought was, "but I'm a Health Activist and I use science. I don't push anything I believe on others."

That is very true. I practice every day respecting everyone's right to choose to believe whatever they want. To me, respect means that sometimes we will simply agree to disagree, and that's okay. Here's the kicker for me:

You must know your options before you can make a choice.

With that in mind, I enthusiastically use science and experience to present a point. A choice. An option of something else to consider believing. I try to present both sides of a point as best I am able, and if I am not able to present another side, I try to be mindful that there may be another side and I may not be 100% right. I invite, nay ask for other opinions in almost everything that I write. Most of the time I don't hear from anyone who disagrees with me (which is too bad), but sometimes I do. I enjoy engaging those that disagree with me, not because I am making sport of their opinion or trying to push mine onto them, but because I am genuinely interested and want to learn more.

How do you make sure you are not presenting an issue from only one side? How do you resist spreading propaganda? Do you invite discussion from others who may not agree with your stance on a subject? Are you respectful of their opinions? How do you handle them when they are not respectful of yours?

The truth is, no matter how hard I want to present both sides of an issue, sometimes I know that I am just not able to do it as it should be done. I want to, but I may have had a terrible experience that colored my opinion. I may not be far-sighted enough to see all the variables. When this happens I try to let the reader know that I feel I am biased, and I try to present links to others with differing things to say.

Are you ever a bully - even just a little bit??

Like it or not, the word Activism, or Activist does have negative connotations, and I believe the older you are, the more negative those reactions may be. It took me a long time to warm up to the term, because I believed what the professor believed - Activists were bullies.

Pretty soon, I began to find myself defending the term. After all, I am if nothing else, active. I encourage others to be active participants as well, both in their communities and in their own health care. That is in fact, my goal!

My point is that - as Health Activists - I think it is even more important for us to set the stage. Activists in general have a bad rap, and often they deserve it. They write with incredible passion and feeling, but with too little fact and sometimes no science at all. To make matters worse, many communities discourage including scholarly links in their posts. I have personally been slammed (and even kicked out of a group once) for including links to illustrate a point.

I don't want to be the purveyor of propaganda. The mere word conjurs up visions of 20th century wartime propaganda, much of that by Hitler (which he said he learned from our US propaganda efforts). I want to illustrate points, not try to prove them, but that's tough for me sometimes.

What do you think of the line Enthusiasm without science is propaganda. How does it make you feel? Do you agree? disagree? Why?

Do you find yourself trying to find links to 'prove' a point? How do you most successfully illustrate your points without seeming abrasive?

Comment by Dianne Rees on December 14, 2010 at 12:03am
Great post, Ellen. I do think that enthusiasm for a position that isn't supported by evidence tends to be just noise. It can be well-intentioned noise, but it doesn't do much good. On the other hand, evidence without empathy's pretty useless as well.
I confess I do tend to research when people make statements about health that aren't supported by  credible sources,  because I think others may not have the time or the experience to get a reference quickly (& I've done this for a living) and because I think not having the facts can lead to harm.  Also, if I have a gut feeling about something, I don't want to shoot my mouth off without finding out if the other person has a point. So I actually research to find balance vs to prove someone wrong.
However, I think the issue of a community "correcting" misinformation is a sensitive one, particularly when people who are very well meaning are sharing health solutions that are not really based on any scientific evidence. For example, I'm thinking of some of the exaggerated claims about nutritional supplements that get made sometimes. As much as I might want to, I won't come out and say I'm glad you've had good experiences with a certain regimen but odds are that's just a fluke; these blanket claims you're making aren't really supported by any clinical evidence. After all, the person's experiences are valid for them and they were trying to be helpful. (There's a definite tension between doing information "gardening" in a community and trying to foster participation.)

I suppose one thing a person can say is "here are some resources of interest that point to a different or less cut-dried-outcome than one that's been presented." Then you let people come to their own conclusions. However, I think even that comes off better if you've been active in the community where the post has occurred. People know where you're coming from then and can see that you're not being snarky.

Comment by Kelly Young on December 16, 2010 at 9:44am
Great points for discussion, Ellen!

I'm wondering if you don't get a lot of argument because you tend to present fair posts and give both sides room. That's how I've felt reading blogs you wrote. Also, WEGO is such a lovely polite place. :)

More to the point though, we should carefully consider facts that are presented which challenge our views. True. I wish there were a truth meter to show which are baloney since there are studies that come out contradicting each other all the time...  (Great article on that - here.)

Some "facts" I  "know" to be true from hearing thousands of patients say them, no matter what the study or book says. Other times, I scratch my head & wonder about a missing link. Dianne is right - we all come to our own conclusions. That's why I always post the negative and argumentative comments & engage them on Twitter. If my "side" of a view is right, then it will be able to stand even with the argument & further consideration.

Personally, I hate the word propaganda. I have a lot of enthusiasm as you know. Hopefully, if I keep humility with it, that will keep me out of trouble. ;)
Comment by Amy K on December 18, 2010 at 9:01pm
This raises  a lot of really good points Ellen!

First of all, it would be really hard to sit and listen to someone describe why they hate activists, but if you're experience had been to only have beliefs and information pushed on you, then it would be equally hard to like us.

I believe it's very important to let our passion fuel us and fuel us to further research our positions. Sometimes, it is hard to have access to all sides, but it is important to allow for the possibility of differing opinions, viewpoints and perspectives.

Personally, a lot of what I stand up for is subjective. For example, there is little scientific evidence for me to draw on about the pain of mental health stigma but there is plenty to document the ill effects of trauma or the hardship of living with chronic pain. So much of what I do as an activist is to shine a light on a topic or what life is like living with a certain illness, disease or health challenge. There is plenty of room for different perspectives in my activist efforts and I certainly hope it is not seen as propaganda.

When I am moved to do so or when the situation necessitates it, utilizing data to support a statement or position feels like extra reinforcement to drive a point home, but I don't feel that it is always necessary in order to make my point. I like having the support of science though!

I also agree with Kelly about the tone of your posts Ellen. You are extremely fair and I always admire that about you!
Comment by Ellen S on December 18, 2010 at 10:25pm
I read Kelly's article she linked to with interest.  It says these studies are false, when I think maybe the author meant to say flawed?  There is a difference, yes?

The Free Dictionary lists the definition of science as:
a. The observation, identification, description, experimental investigation, and theoretical explanation of phenomena.
b. Such activities restricted to a class of natural phenomena.
c. Such activities applied to an object of inquiry or study.
2. Methodological activity, discipline, or study: I've got packing a suitcase down to a science.
3. An activity that appears to require study and method: the science of purchasing.
4. Knowledge, especially that gained through experience.

The toughest part about human research is that we are not lab rats/mice who have virtually identical DNA, fed identical diets, living in the identical situation - everything controlled and everything known.  I have long suspected what the article eludes to: you can find research to back up nearly every stance one would choose to take!  Perhaps it is a bit like our court system - far from perfect, but the best around... for now?

Do you think that make most research essentially propaganda (for lack of a better term) as well??

So, where does that leave Health Activists who want to present something with as much fact as possible? with as much research to back it up as possible?

I think this is where the human experience is useful and why patients come to Health Activists to hear about their experiences.  I can say with 100% certainty that I have certain side-effects with a medication.  I don't need some research paper to tell me that it's a side effect because I have experienced it.  The trouble comes when I try to tell my doctor or another patient "hey, this is my experience".  I have nothing to back it up.  It's just me - a lowly patient - giving my perspective which admittedly, could be filled with flaws, bias, and even outright mistakes.  But it is personal 'science' (see above definition).  I think this is why, at least for me, I try to reserve judgment until I have experienced something for myself.  I think patients see this and this is why they like listening to patients opinions on treatments etc.  Experience from a patient with nothing to gain speaks much louder than a research paper written by someone with something on the line.

I think what the professor was getting at, was that we can be very passionate about something, but that doesn't make it the truth.  Kelly, for all your enthusiasm (which is part of what makes you such a fabulous HA) you DO employ science if you use the definition above, because you are utilizing research as well as observation of patient experience.  To me, this is better science than either alone could possibly be.  I think most scientists and doctors do realize this as well.  This is why the FDA often changes medication labeling after it has been released to the public.

Dianne, I love your statement about empathy SO much!  Oh, if we could just put that on a few million billboards!

Amy, I have seen what kind of experiences you've been able to share with people.  This is why Health Activists are so important to patients!  But, just as I mentioned to Kelly, if you utilize the definition above, you are giving these patients personal science as well, because these are your observations based on your experiences.  You use these observations to help others make decisions for themselves.  The best thing about so many HA's I know, is that they tend to give up their experiences as fact, yet leave the reader to decide for themselves if there is more to the subject... and the best part is the conversation that happens as a result!  I really wish physicians could see what patients are talking about...

Comment by Kelly Young on December 30, 2010 at 3:17pm
wow, Ellen. Yes, some flawed and some false, hard to judge motives or know how much of which. Good points. But the point is a lot we "know" turns out to be wrong.

Well, they (doctors) can if they will read the blogs. Slowly I think some are coming along. I wonder what an organization (like WEGO Health) could do to promote that. I know there are other sites that seem to discourage the scientific value of patient expression, so it would be very valuable.
Comment by Dianne Rees on December 30, 2010 at 6:40pm
I've heard some docs say they're reluctant to participate in patient communities because they might be perceived as "barging in." Maybe an open invitation on #hcsm would help connect both patient and physician communities. What do others think?

Thursday, December 9, 2010

The Number Two Cause of Illness is.........

It is estimated that 50 million Americans suffer from an autoimmune disease, making it the second leading cause of illness in the United States!

Autoimmunity is largely a hereditary disease, a fact most people - patients included - are unaware. They state this is one of the probable reasons it takes autoimmune patients an average of 4 years and 4 doctors to receive an appropriate diagnosis.

The AARDA (American Autoimmune Related Diseases Association) is asking patients to tell them how many of the 50 million estimated patients are your family members...

When I read this on their Facebook page, I stopped a moment to ponder the question. My known family is small, but let's see:

1. Me
2. My #1 child
3. My #2 child
4. My mother
5. My Grandmother
6. My Great Aunt
7. My Great Grandmother
8. My Grandfather

Several family members posed together including my Great grandmother (center) in her wheelchair

My father likely has autoimmunity as well, but refuses to go to the doctor for testing to find out, so we may never be entirely sure. However, that said, he is also adopted, leaving an entire half of my family tree - empty. Based on the little information we have about his birth parents (descended from well known families for which there are some published records), autoimmunity was likely a problem for them as well.

Only the first 4 I've listed are living relatives, with the exception of some mentioned below...

My mother has multiple autoimmune conditions, but since she is still living I will let those remain a mystery for now. She was born when my grandmother was 40, so many of my relatives had already died before I was ever born.

Children #1 and #2 have Dx's of Hashimoto's Thyroiditis.

My German Grandmother had horrible arthritis in her feet - so badly they were deformed and she could only wear bedroom slippers for shoes the entire time I knew her. Interestingly her hands were strong and able until the day she died. She also went blind early on from macular degeneration, now also becoming linked with autoimmunity and specific genes.

Her mother (my Great Grandmother) had surgery around the turn of the century because her rheumatoid arthritis was so serious that she had ruptured all the tendons but two in her hands. They took the two good tendons and used them to make the thumb and index finger of her right hand usable again so she could function - considered cutting edge surgery back then. The Mayo brothers were 'neighbors', so my family received some of the best medical care possible back then). She spent a great deal of her life wheelchair bound.

My grandmother's sister (my aunt) had early onset Parkinson's Disease - now with some evidence it too may be autoimmune in nature. She actually underwent experimental brain surgery, done by the Mayo brothers long before that was commonplace. She also suffered terrible and debilitating endometriosis, another autoimmune condition.

My Norwegian grandfather was also blinded by macular degeneration and suffered from a condition called Dupuytren's Contracture - also an autoimmune disorder. I have little information about his family, so if there were other conditions, I would only be guessing.

My grandfather (far left) and his siblings

I have distant cousins in Norway which I understand have MS - another autoimmune disease. Another cousin (not a blood relation) also suffers MS.

When you consider the fact that autoimmune testing is a recent development (second half of the 20th century), it's difficult to say how many of my relatives might actually be/have been autoimmune patients, and what their autoimmune diseases may have been. Rheumatoid arthritis is an easy one, because in my family's case it was very visible. For those with more invisible forms of autoimmunity, the truth shall most likely remain a mystery.

I encourage Health Activists to pass along the link I've provided above to their groups. The more people reply to them, the more accurate assessment they can make. Additionally, the more conversation we can create around awareness of the heritability of autoimmunity, the more people who might have a lightbulb moment resulting in a diagnosis and treatment for their condition.
Comment by Denis Van Loan D.D.S. on December 23, 2010 at 4:19pm
There is little good argument against autoimmune diseases not having a genetic or heredity connection.  On the other hand, there are indications that dietary factors can reduce the severity or even eliminated the negative aspects of autoimmune diseases.  You can get a more comprehensive (13 different ways) that help defeat rheumatoid arthritis at my WEGO blog:
Additionally...Vitamin D is a powerful and important immune enhancer.
I would like to add one more interesting set of statistics from the recent publication by the "Vitamin Doctor", David Juan, M.D.   Vitamin D deficiency is found in these various diseases:
  • Rheumatoid arthritis, asthma, multiple sclerosis, Crohn's disease, diabetes 1, "ankylosing spondylitis"...73%
  • Grave's disease...58%
  • Fibromyalgia and lupus...50%
It is interesting that the RDA of vitamin D has increased to only 800 IU a day.  Most experts and researchers of vitamin D recommend from 2000 IU to 5000 IU.  Up to 10,000 is even considered save by the majority of researchers.

Tuesday, December 7, 2010

Rituximab for Sjogren's Syndrome

Rituximab is a man made antibody most frequently used in the treatment of autoimmune Rheumatoid Arthritis and B cell non-Hodgkins Lymphoma - a type of cancer. Rituximab is a type of chemotherapy agent. In 2008 it was the world's best selling cancer drug.

A study was published in the journal Arthritis Rheum Jan, 2010 that discussed its use in patients with primary Sjogren's Syndrome - an autoimmune disease that primarily affects the moisture producing (exocrine) glands.

In any autoimmune disease, the body mistakenly begins to attack its own cells (self). The immune system is multi-faceted and works much like an army. Autoimmunity is largely a mystery, but what is known is the system somehow (there can be multiple mechanisms) 'forgets' which cells are foreign and which cells are self. The body targets self, and healthy cells are destroyed by friendly fire.

Rituximab is an injectible chimeric antibody. (A chimera is a mythical creature with body parts from different animals) In this case, Rituximab is part human and part mouse. Because it is prepared using the cells/proteins of living creatures it is called a biologic. Because it depletes the immune system it is also called a DMARD - Disease Modifying Anti-Rheumatic Drug.

Rituximab is used mixed with other fluids and given via IV once weekly. Each infusion may take 3-4 or more hours. It works as an autoimmune treatment by depleting the number of B cells - one of the many types of specialized cells in the immune system that play a part in inflammation. Normally, inflammation is a necessary and normal immune response. In autoimmune primary Sjogren's Syndrome, the inflammatory response is out of control.

Rituximab is not a first line drug. It is used only when other biologic medications have failed. Rituximab is an antibody that is specific for a molecule called CD20 that is normally present on the surface of B cells. The cells are targeted and lysed (destruction via explosion) by the Rituximab antibodies.

There can be significant side effects, especially during or shortly after the first or second doses. One of those side effects is called serum sickness. In serum sickness, the body reacts negatively to the introduction of a foreign protein (the Rituximab) into the system. Reactions can range from mild to life threatening. It is interesting to note that serum sickness was noted in 3 of 8 patients in an earlier study in which low or no corticosteroids were used, but in only one diabetic patient in the second study of 30 patients in which higher doses of steroids were used.

It is unknown if the use of steroids in the second study helped to increase the positive outcome for Rituximab and placebo patients (slight improvement at 5 weeks) in that study, but it seems suggestive that it may have helped to prevent serum sickness in the Rituximab patients.

In the respective studies, improvement was seen in these areas: secretion of saliva as well as inflammatory activity within the saliva, improved lab values (ESR, IgG, FACS analysis on B and T cells), fatigue, parotid (salivary gland) biopsies, and there were fewer extraglandular symptoms (joint pain, kidney involvement, etc). There was no increase seen in tear production. The most significant point in time at which improvement was noticed in the second study was between 12 - 36 weeks of treatment.

Because Sjogren's patients are at increased risk for B cell Lymphoma (a type of cancer treatable by this medication) and Rituximab depletes B cells, the studies suggest that treatment with Rituximab may also help those patients lower their risk for this disease complication.

In conclusion, the second study's research team stated: "This study indicates that rituximab could be an effective and safe treatment...for patients with primary Sjogren's syndrome."

Note: I speculate that it may be important to some patients that the addition of mouse DNA to Rituximab may create problems for those allergic to mice. Please check with your doctor if you are concerned about this type of reaction. A quick allergy test to see if you are sensitive may be a prudent precaution.

I would also like to add that, when we transfuse equine (horse) foals with antibodies (a fairly frequent occurrence), serum sickness also frequently develops. Slowing down the infusion (sometimes greatly) and allowing the foals to move around, eat etc, helps to prevent/lessen stress and this reaction. I don't know if this would be helpful for their human counterparts or not, but might be worth mentioning to your physicians in case you'd like to ask to try it.

Getting thru the holidays, one glass at a time

When times are stressful, I go to the cupboard and pull out a glass. I have clear glasses, colored glasses, frosted glasses. They are tall, short, round, squared. Some are smooth, others bumpy. My favorites by far have long elegant stems.

There is nothing that will make me feel more pampered than sitting in my dining room, surrounded by the things I love. I listen to some piped in music - when I want to feel relaxed I love classical, or even the old standards. Soft jazz is nice for a change too sometimes. Sometimes I use one of the CD's of nature sounds I have. I can take a swig, and look out my window and see my beautiful horses grazing just beyond my door. When I'm feeling stressed or just not feeling good, these are the things that comfort me.

So I go to the cupboard and choose a lovely piece of stemware, then to the refrigerator and pour myself a long, tall glass and sit down somewhere to enjoy the delightful taste as I swirl the liquid round and round.

I'm guessing you might by now have visions of me sitting contentedly drinking a lovely glass of Chardonay... or maybe a light Rose', but I'm not...

Photo copyright E Schnakenberg 2010

You see, I have this thing against water. I hate it, but it is so incredibly vital to me - a Migraineur and someone with a tanked immune system and Sjogren's Syndrome, and who gets frequent kidney stones. Aaaaaahh, but I love my pretty goblets. So, they have become a useful tool to get me through the holidays. I use them to fake myself into drinking lots of water, when the reality is that I would rather be drinking almost anything BUT the clear, boring tepid stuff.

I'm not a rich person, but I do have a nice collection of goblets. My kids shake their heads. My hubs chuckles as he turns away. None of them understand my fascination with stemware. That's okay.

Hydration is the key to staying healthy. Migraines can be triggered by forgetting to drink. Kidney stones grow in an environment in which the body is in a perpetual state of dehydration, and passing one without copious amounts of water is nearly impossible. Our immune systems need a constant intake of water to flush out toxins and the discarded cells that our lymphatic (trash) system accumulates every day. Sjogren's Syndrome is an autoimmune disease in which the moisture producing glands of the body are slowly destroyed by the very antibodies that are supposed to help us, and dryness is a constant war that is waged both day and night. So, you see I need water very badly.

All of us with chronic illness need to find ways to make unpleasant daily things seem like a true pleasure. To me, drinking water - for any reason - is unpleasant, but I've adapted to the point that I actually enjoy it sometimes.

Do you have stemware that you use even occasionally to make drinking water seem like less of a chore?

One needn't be rich to own beautiful stemware. I've even been known to buy a few from the Dollar Tree or local dollar store - that's right, they're a whole buck each! Then I get creative and sometimes engrave them, or add a little acid etch to them for a frosted look - my own unique creations. Some people make their experience fun when they paint their goblets with special glass paints found at most Michael's or Hobby Lobby. The paint is baked onto your stemware to make them permanent and dishwasher safe.

Fun rings can be made or purchased to put around the stem to identify the glass as yours. That's right - it's jewelry for your stemware - how can that be bad?!

So, I encourage my readers this month to buy one piece of stemware this month, and use it to try to make something mundane into a pleasure and something you look forward to. Paint it, frost it, decorate it, or just enjoy it plain, but USE it. Rehydrate yourself each day for better health...

Monday, December 6, 2010

Was Hitler more ethical than you?

Today I learned the most ethical person in the 20th century was probably Adolf Hitler. The entire class was as shocked as I was, but in the end, we all agreed with the professor lecturing us. You might be surprised why...

Ethics and morals are important to Health Activists because they help to determine how we present a topic and what the reader will get from what we've written. Do you know the difference between the two?

I thought I did. Here is a little of how it was presented in our class:

Have you ever thought about the two? How about these questions...

Is it ethical/moral to eat meat?
Is human euthanasia ever ethical/moral?
Is it ethical/moral to put a cat through chemotherapy?
Is it ethical/moral to put a child through chemotherapy?

Ethics and morality are actually worlds apart. Someone who is ethical follows what they believe. They are true to those beliefs no matter what, even if those beliefs may seem crazy to someone else. They may not believe the same thing as someone else - one society may be for something that another society in another part of the world thinks is terrible, but both can be ethical.

Morality is the difference between right and wrong. Ethics is what you do with those beliefs. For example, if you believe it is wrong to eat meat, then when you eat it you are not being ethical.

With that in mind, what do you think now of Hitler's ethics? He believed devoutly that what he was doing was the "right thing", and he did it with brutal consistency.

What he was doing was not moral - it was horribly, terribly wrong and all of your guts told you that as soon as you read the title to this post. But for all his brutal flaws... Adolf Hitler was very ethical.

As Health Activists, we have many options... we can choose to write about something, or not. We can be ethical in what we're writing because we write what we believe at the time, but that doesn't mean we are always right.

Make me a liar...

How do you handle your topics when you're writing? Do you only write about things in which you agree 100%? Do you present both sides fairly? Is that moral? Is that ethical? Isn't that one of the reasons we try to generate discussions in our communities, to explore by seeing what other opinions are? Are you genuine in helping other Health Activists by commenting and participating in these explorations?

As Health Activists, do you think we are bound by the principal to present the facts and only the facts, or should we interject our own opinion into what we are saying? If you present a subject in which you are passionate, how do you handle this?

I handle it by always trying to tell myself, "Okay Health Activist Ellen... make me a liar."

I think this is vitally important because I am not in the business of making news, but writing about it. But I am also in the business of telling my opinion because I am experienced, and patients value and want to read about experiences.

It's difficult for me to write without bias because I am intimately embroiled in the topics I discuss. I am more passionate however, about writing both sides and representing them fairly. I try to present the other side with as much passion as I genuinely feel for "my" side. You know what happens? When I do that with honesty, I often find myself with the need to really reflect on my position, and feeling just as passionate for the other side! What do you think that says about my ethics? morals?

Comment by Janeen on December 6, 2010 at 5:31pm
Great post Ellen! There have been several topics here on WEGO Health that I have not jumped into the discussion on because of my "ethics and morals". The topics were fantastic health conversations but not ones that ethically I felt that I could be a part of even though part of me felt a moral obligation to do so. My feelings on the topics run very deep. And I do believe that I am right. But not everyone shares my opinion. Because I was unable to take on both sides fairly, I decided it was best for me to back off. I didn't feel that I had anything constructive to add to the conversation so I felt that I had a "moral" obligation to let the conversation take shape without my voice in it.
I try desperately to share my views on subjects I am passionate about from both sides. And I love that WEGO Health is a forum where we are safe to discuss health topics passionately from all sides.
I think most of us find it difficult to write without bias. Some of my best writing comes when I write straight from the heart. I can't be unbiased there.
Thanks for bringing up this topic. This is one I'll be pondering for a while.
Comment by BigSis D2HGA on December 7, 2010 at 2:45am
Combating bias is one of my downfalls as I tend to vent. Based on my personal experience though I try to always add the positive. Outrage and anger was the appropriate response in some of my situations and that of several friends in whom we bonded to each other by the same issues and experience that come into play. Over all, I've had good doctors. One thing that has been difficult to overcome in the medical world and social society is the stigmatism "mentally retarded" or "retarded."
"Retarded" is a word which meaning has been changed over the years through society and used in a denegrating manner and begins even in childhood on the playground. "you retard!" or "that's retarded." At this date, if you are "retarded" you are not a transplant candidate. The quality of life doesn't not come into play, only mental acuity. Very sad but true.
There was an outcry when found that an institute used patients for experimentations. And there were those who were sterilized. This is not a new practice. I collect antique books. One book I have was published in the 30's. They describe a "idiot" and a "criminal" and other descriptions of someone who has mental health or intellectual handicaps. Their solution was if you are a habitual criminal, you must be sterilized so this isn't passed on to children. "Idiots" must be sterilized. There wer other "solutions" to make an end to this problem. It's not just "retarded" that people turn into social stigmas. "Gay" no longer means happy, carefree. A Faggot is actually a bundle of wood. A fag in England is a cigarette. But, society twisted those words to imply something as a label and as a social pariah. Our ethics have been dirtied by twisted words and our morals are generally estabished by the society in which we live. Since our ethics are born by our moral convictions then I have to look back to the root of those convictions. I find I am of wrong mind set in some things and wrong on the others. Like you said Janeen, it's hard not to "speak" without bias. When it comes to some of the things I've seen and felt it's very difficult for me to not be judgemental in addition to biased. At the same time, I think that views on different subjects are productive and passion and conviction is the well of truth to our idealism..that's where our personal ethics, to me, are born. I can't wait for you to write more. And I know that whether I would or wouldn't agree with what you might say would still enjoy your voice. (if you tell me to shut up...I won't be offended! I admit I am an old windbag, long winded..I should have played bagpipes).
Ellen, I love your post. Both of you have given me food for thought this week and I am so glad to have the opportunity to read your posts. Ethics, moral and medical, isn't an easy subject because our objectivity is different in any given situation.
I have always adamantly believed that prejudice is born of fear, misunderstanding and ignorance. It's a learned trait. Physical handicaps, sexual orientation proved to be genetic, intellectual handicaps from brain injuries whether disease or injury, epilepsy, ADD, ADHD, all these are handicapping by the stigmas society has placed upon them.
The horse came before the cart in looking at the antique books with the fixes of our world by eliminating the "criminal" "retard" "idiot" "dullard", etc. shows that. We are just now taking the lights from under the bushels. Today, some people are still afraid to take their handicapped children out into public. Some resent questions. Most of us love it when someone walks up and asks questions. This is a start of education.
The title of the book I have? I believe it is "Moral Values for Modern Day Men." What isn't learned by myself is control of my own bias and emotions. I never liked to show emotion because to me I felt it was showing weakness. I still have some problems being expressive in person. For some reason, I can be in written words. Perhaps because in the heat of the moment I find that I can talk with without restraint. You can indeed be profound without being profane and I can be very firm and without violence! (no matter how a mental vision of a well-placed smack makes me this I would be a liar to say otherwise)
It is more, I think, that people don't wait for me to have to take a breath to get a word in edgewise. When you feel so strongly about an issue, it's hard not to talk at the same time!! This is my first time on this site. I haven't had a chance to explore it yet and hope that I have an opportunity soon to do so fully. I don't want to just vent. I do have some experiences to impart that perhaps may or may not help someone else and I am looking for the wonderful people here I know that I am going to meet that will help me by teaching me something new or support in a common cause or problem. And when I'm on a soapbox someone to share it with and someone who can freely debate (without hostility) an opposing point a view which without no one learns, agree or not.

My promise at this point is from hereon I will be less verbose and write small short paragraphs instead of chapters and volumes.

I must add a very happy "p.s." After lobbying not just in the US but also Canada and other countries, the U.S. passed a bill prohibiting the term "retarded" on a person's medical, state or school records. What this will mean in the future for special needs that have been affected by being "retarded" (I have some physicians who call my daughter's handicaps a "profound mental and evelopmental delays"...I like and endorse that, it's the truth) remains to be seen. Children with her type of disease often need transplantation of either liver, kidneys or both. The fact that she has more than one genetic disorder may come into effect. But now the label "retarded" should not. I have a very fine genetic/bone & joint fellow in Houston who is willing to take on my daughter's rare bone disease and is prepared to do radiation therapy if the tumors in her long bones show signs of growing malignant and a dermatologist who is ready to take action should any of her pre-malignant melanomas which is her other rare disorder show any changes. These are the doctors whose dedication, ethics, and compassion I have seen for more than 19 years now. For a child who would not live to be 4 months old, that's amazing. These are the doctors who have supported her, and us, and have helped her continue to thrive. The rest has been her fortitude, her determance to do things and at least attempt it when her body doesn't always comply. These are the physicians who see this in her and have never written her off, while so many others have. Our genetic/metabolic doctor told me once "if it won't hurt to try if it may help, we'll do it...but, the rule is to first do no harm." That is his ethical stance and a healthy one I think. What more can you ask for..a doctor who listens, discusses, and it being a two sided discussion, willing to try things on practical observation at home....what more can you ask for! My idea of good medical ethics and care. (run on sentences even...sorry!) It is that which when I see poor medical practice and ethics are colored more deeply and I feel more acutely when it is such a stark contrast to all the good care we have gotten that I can't seem to shut up.
Comment by Ellen S on December 7, 2010 at 12:06pm
BigSis D2HGA I think you should blog more frequently about these issues. You speak from the heart and from experience which is valuable in the real world...
Comment by Amy K on December 11, 2010 at 9:04pm
Very interesting topic Ellen. Thanks for the great food for thought.

As a Health Activist I am pretty tied to my passions and my own personal ethics, but I also believe in being a moral person. Most of the time I am able to have discussions without getting bothered by other people's ideas of what is/is not moral. Alicia's recent post about Komen comes to mind, I felt what they are doing is morally wrong and my ethics were at the root of my rant! Am I right or wrong? I don't know for sure, but it feels good to be able to voice my opinions knowing that others will respect it, leave it if they don't like it, and share their own, as well.
I think activism is usually about living out our ethics. Being a reporter and sharing the facts is a part of it as well. I believe in our community, it's okay to share my passions and the topics I feel ethically tied to, as long as I always do so respectfully, and that's another moral issue or is it ethical? LOL.
Comment by Ellen S on December 12, 2010 at 1:14am
Great question!!!  Morally, I believe you are right, and ethically I do try to practice that myself.  But I also believe it's morally responsible to show both sides of the coin, so I try to do that too because morally I feel that responsibility and act on it because of my ethics.

There are so many sides to these questions, I fear we could go on and on!!

Comment by BigSis D2HGA on December 14, 2010 at 9:17pm
Repectfulness, Compassion, Empathy, Dignity, Humor, Willingness to Hear and be Heard.
 I've often seen ethics become a bone of contention where neither party agree to disagree.  Quite frankly, it makes me crazy!  Mainly because I see it as counterproductive and something that can become prejudicial.   Even when being seriously adamant about our passions, pros and cons I think we also need to maintain an element of sense of humor and grace to tone it down.   Otherwise, don't chew that bone.   In my family it is politics..and today medical ethics are politically motivated.  I see things that make common sense, some that do not.   Where is the meeting place of sanity?
      The fine points of what is beneficial to each individual need is the building block of my idea of what educational/political/medical ethics should be.

Do pounce on "my idea of what....ethics should be."
        The point of this when speaking of morals, ethics...our responsibilities to follow up on our belief?   I took a teacher by the hand to teach him how to teach my child.   Despite criticism for keeping her out of an inclusive environment, while she was in a special needs classroom she was benefiting.   She wasn't in a room outside of the rain learning what rain meant.   When she was in a special educational room she was told "the sun is shining today," etc.
       In pointedly ostracized (sp...sorry) for my ethics when it comes to Special Education and Inclusion, I don't feel that either side was morally or ethically wrong.  .  I think we have to demonstrate our ethics in a way that is productive without being critical, knowing that idealism is diverse by our perception, by looking at one thing in a different aspect - even if just one facet - and respecting the other for it.   Because it is (or should be) a learning experience and a way of garnering understanding on both sides.   However, that wasn't the ethical thing for me to do.  It wasn't with the program.   It wasn't right for me to place my child in a inclusionary setting just to prove a point.   I stepped out of the realm of ethical argument of inclusion within a classroom setting to where there was benefit.
        Hitler's only had one ethical trait...his own.  When blinded by prejudice and fear is essentially the same morality that Hitler upheld.  How far back did Hitler learn his prejudice and under what circumstance.   A physician pledges to first do no harm.   There is a definitive credo of medical ethics.  What a can of worms we can open up!   Political, Educational, Medical, and Religious ethics.   Where the line should be drawn, how we voice our beliefs hinges on respect for each other and a willingness to listen and be heard.  Dignity is another word that comes to mind.    Pride is another.
          There was a word that I kept reaching for in my mind that summed up everything I think when it comes to our different views of what is and is not ethical or moral.   When scrambling eggs for Sherry's supper tonight it came to mind.   Tolerance.    When it offends me on a moral and emotional basis as to what I feel is right or wrong.   I speak out and if the offense is great enough, I'm going to act.   This is a reaction that I call human nature.   Medical ethics have been in play since biblical times.    What is fascinating to see is while as a patient, I wasn't able to file complaint as to the ethics of patient dumping.....I heard my child's pediatrician threaten another physian with report of patient dumping should admittance and care be refused.   So ethics in this particular instance of my own and our physician were the same.  (I did say she'd been medically dumped a few times?  She was not in this hospitalization.)   "Seizure patients with seizures are not hospitalized for seizures."  But, when off of base-line continuous back-to-back seizures should be and not a decision for a Gastro-Interologist.    We were, reluctantly, admitted and from that point on received sub-standard care.  She was dismissed, still in active seizures, with a resting heart rate of 160 bpm and MRSA.  We were back in the hospital within an hour of returning home (after an retched anxious 4 hour drive) and then transferred to a higher-grade facility by ambulance from there.    So, there were ethical violations on several points by one physician, carried over to the floor which carried over in the medical stability of my child (being their patient) which was not only fed by bias but fueled as well by an ethics tort by another physician!   There were two with ethics, the third I think without or just a different view?
          Question:  Separation of conviction and there any?   Is it how they formed?   What do we do about learned behaviors of others when we are acting on our own?    Medical Ethics is something that has a unilateral ethical basis.  Mixed with personal bias those ethics can go out the window.   It becomes not a matter of ethics but rather the lack of?  Stepping outside of morality, of ethics, when a person has no convicitions, no sense of morality and is self-serving how can there be ethics?
         I've been in a rut of type, edit, erase...for a while now and can't think of a summation.  I don't think that there is any!!