Monday, November 29, 2010

My #1 gift pick for Autoimmunies and chronic pain patients

Black Friday shopping is always a challenge. There are so many awesome deals out there to be had, if one can only get up early enough, get to the stores and wade through the waves of anxious shoppers to find their treasures.

I don't often brave the crowds of Black Friday, but this year I did. I found some awesome deals I will talk about in later posts, but I wanted to be sure and start the season off by presenting my favorite Black Friday find:

The Soothing Squooshy Conair hand held massager in ice blue

Introducing, Conair's Soothing Squooshy hand held massager!

The super-soft microfiber plushy unit is slightly larger than my medium sized hand and comes with a unique elastic band that allows you to 'wear' it when needed. The bottom of the unit sports an easy to press button to turn the unit on, and a zippered access to the massager unit and batteries. The massager itself is powered by 2 AA batteries that are included in the unit at purchase. I purchased my two massagers at Menards for $4.99 which I believe is their regular price. Color choices included animal prints, ice blue and a pale lavender.

The things that make this unit special is its size, price, and that elastic band in combination with a softish massaging vibration that did not set off my Raynaud's, even after a couple hours continual use.

When I got my massagers home I climbed in bed and took my shoes off. I put the units on my very painful feet and clicked the on button. To my delight, the vibration was not too harsh. For me, vibrations or the sensation of shaking can set my legs into serious dystonic spasms, as well as trigger an episode of vessel constriction due to my autoimmune related Raynaud's syndrome. I did not have either problem with these units. Even the noise (perhaps muffled by the plushy stuffing?) was minimal.

For my first use, I left them on my feet about a half an hour. Although I didn't feel tremendous relief at the beginning of my experiment, but the time I took the units off, the relief was marked. The second time I used them, I put them on the soles of my feet and a heating pad on the tops of my feet. I centered the Squooshy's first under the ball of my feet and let 'er rip. Eventually my heel and instep were more painful than the ball of my foot, so I easily adjusted them. I also spent some time with the units on the tops of my feet. No matter where I put them, after a few minutes I felt relief. I did not have to twist my foot or keep them at otherwise unnatural positions, because I had two units and I was strapped in for the duration.

That first night I strapped my new best friends to my feet and tried as usual to go to sleep. Normally my feet are so horribly painful at night that I sleep very fitfully. This night I accidentally fell asleep with the units buzzing away and only awakened when the cheap batteries they contained at purchase, died. I was able to sleep the rest of the night in much less pain. My hubs didn't even wake up to tell me to shut them off - they were very quiet (especially under the covers) and the vibrations weren't strong enough to conduct themselves through the springs of the bed we slept on.

Last night, I went to bed with my Squooshy's on, and hubs woke me up (as I'd asked him to do) to remind me to shut them off. When I woke up in the morning, I immediately put them on and turned them on to see if they would ease my severe morning pain before I had to actually stand on them to walk to the bathroom for morning meds. I am pleased to announce that it did help me.

For kicks and giggles I've put the Squooshy's on my hands, wrists, elbows and even a shoulder. They've seen action on my feet, ankles and knees too. I even laid on one in the small of my back to see if it would ease my back pain without making me uncomfortable as most other units I own do.

This was the best $4.99 X 2 I've spent in a long, long time.

I want to add that the tag on my Squooshy's do give a warning, and each patient must speak to their doctor and make up their own minds how or if they want to use them. I am just a patient wanting to spread the word about a good product I've discovered that helps me. It's up to each individual to seek counseling from their own doctors who knows their health history before deciding to purchase or use one.

The warning says:

CAUTIONS This massager should not be used in the following cases: Tuberculosis, benign and malignant tumors, hemorrhages, inflammations of the skin, phlebitis and thrombosis, open and fresh wounds, bruises, broken skin or varicose veins, undetermined calf pain, or joint pain.

I do have varicose veins in my legs, so I did not use them where those veins are an issue. I was using them for joint pain, but both my chiropractor and my osteopath suggested a massager for some of my joint pain issues. Because of my Raynaud's (not mentioned on the tag) I will always have to be very careful about how I use them, but for now they are giving me a great deal of relief when used in concert with my anti-inflammatories and some common sense.

Comment by JennyPettit on November 29, 2010 at 11:57pm
Can't wait to see more of the cool products you've found. Particularly interested in any with heat applications:) Thanks for sharing and such a thorough review!
Comment by Amy K on November 30, 2010 at 12:03am
Thanks for sharing Ellen! I was waiting for pics and info on these!

Dear Santa...
Comment by Ellen S on December 1, 2010 at 12:04pm
Thanks so much for the comments! I asked my autoimmunie FB pals what they would recommend giving an autoimmune patient and I got a really wide variety of answers. As soon as I think the conversation has ended, I'll be sure to post the results here!
Comment by jayepea on January 8, 2011 at 2:40am
I just read about your find!  Thanks so much for sharing and I'm going to find these no matter what!  I need these for my feet and hands! I really, really, really appreciate the info. so thanks again!!!
Comment by Ellen S on January 9, 2011 at 10:10pm
Thanks jayepea.  I really do love mine.  The biggest trouble I have with them is falling asleep with them on my feet.  They do make me feel so much better and a night's sleep with them is much longer than I've had in quite some time, but unfortunately, the little batteries have a short life.  If I fall asleep, the pair of batteries give out around 4:30 in the morning.  This however, is the ONLY negative thing I've found with them so far.  And mine have already lived a fairly hard life.  :)

Monday, November 22, 2010

Who is your digital heir?

Have you ever stopped to contemplate what will happen to your digital or online information when you are gone? Thinking to yourself, my spouse has my passwords and knows my accounts, so there's no issue?

You may be wrong.

According to The Economic Times, there may be rules and regulations in place that will determine what happens to all your hard work online should you die. Although the site is Indian, I think it's smart to look at what they are saying...

Think about it a moment - what activities do you participate in online or on your computer? For me, there are emails, financial records, legal and medical records, blogs, communities, photos, poems, stories, music, online banking, online bill paying, records, well - you get it. I work very hard every day as a Health Activist and I want that work carefully guarded and passed along should I die. I have carefully recorded my passwords, and my important links are stored in my computer (okay, maybe not the smartest thing to rely on).

So, what does this mean?

I assume then that, should I die, my extremely computer savvy hubs will spend a few moments mourning my passing and then go online and use my email accounts and addys to tell all my dear friends and family that I have gone. In my mind I see him some weekend later sitting at my messy desk perusing the folders while peering at my enormous monitor. I imagine him shaking his head at one thing, and smiling at another.

But he won't have a clue what to do past that point!

In my various folders are letters to friends and family that I would like them to receive after I've gone. It's a silly little thing I do when I'm feeling particularly sentimental some days. I'm okay with my hubs reading them, but does he know that I want those letters passed along to their addressees? No.

So, I need a digital will.

To create a digital will, The Economic Times tells us we must first create an inventory. The next step is to get my digital signature authenticated. Then with this information, my digital will can be created. Once created it may be stored online (complete with links) or in a more solid form. The digital will does not take precedence over your last will and testament, but is apparently designed to work in concert with it.

Did you know service providers have different policies about your accounts after your death? It's true. For example, while google may give access to relatives, Yahoo's policy is to terminate the account. Period.

What about information you DON'T want passed on?

Many people might consider what they want to live and be passed on after their death, but what about those things you want to die with you? In order to prevent someone from gaining access you will also need your digital will, or an "account guardian service" (Who knew such a thing existed?!) whose job is to keep your secrets secret by allowing you to upload all of it to their site and tell them who you want to have it. You can also opt in for an account incinerator service and upon your death *poof* it's all gone.

Last messages

There are sites that are designed to give your loved ones your digital will or last words. One of them is called The Last Messages Club.

Have you thought about what will happen to your information when you die? Have you made any arrangements to be sure that those you want or do not want to have access to your information are aware of your wishes?

Saturday, November 20, 2010

Do you share your human side?

This weekend has already been eventful for many reasons. For example, I got a twitter DM from someone asking about another Health Activist who wrote an uncharacteristically depressed post. When I read it, I feared for the author because the emotions were raw, and the depths of the depression were as impossible to deny as the warning signals it held.

I am a 'helper', but I knew I was unable to help my friend and this upset me. Not knowing what else to do from such a distance, I urged the author to call me so we could talk. #1 I wanted to be sure my friend was okay. #2 I wanted to touch bases with my friend so we could talk. I couldn't be there to give the author a physical hug, but I hoped hearing the voice of someone who understood at the other end of the phone would be cathartic.

As we spoke, my friend told me why the post was written... the author was experiencing what every chronically ill person experiences at some point, and they wanted to share it, not only for themselves, but for everyone else as well. The author was also burdened that patients looked up to them as somehow infallible or as a person that holds all the answers, when in fact this is far from the truth. The author's experience and weaknesses with their disease is no different than the experiences of those reading the post, and they wanted to share that process.

After all, we are human - right? As Health Activists, we are more than leaders or educators. We are more than supporters. To many, we represent the illnesses with which we deal each day. When someone comes to a community and sees positive, encouraging words, this means something to them. It gives them hope, and we all need a healthy daily dose of that. Yes, it makes them feel better about their situation.

When we express our deepest emotions and raw vulnerability, this means something to them too. It means validation of their own feelings of depression and inadequacy. It means they are not alone.

Depression is an incredibly lonely disease, especially when it is triggered by a chronic illness that may be "invisible" or misunderstood. Sometimes the depths of that depression fall so low that it is impossible to see anyone else but ourselves. But sometimes reading something like my friend's post makes us feel validated, especially when that friend is venerated as a leader in the community at large. Unlike talking to another person across a room or on the phone, we can read and re-read it and think about those words. We can go back to it later. Seeing other patients reply to posts like that further validates those feelings almost as much as if those comments are directed at that reader instead of the original author.

How do you handle the human side of your chronic health condition? Do you open yourself up and let the raw emotion and feelings flow, or do you think it's more important to keep those things hidden? Why did you choose to do that?

Comment by Amy K on November 20, 2010 at 8:49pm
Dear Ellen,

I'm sure you know I am a big proponent of letting the human-ness show. I don't hide it and sometimes I worry I don't hide it enough. Your post is perfect timing for our upcoming webinar on Monday, "Continuing Health Activism with Chronic Pain". This is a very real struggle for community leaders and participants. I do believe it is always best to let the real you show. We aren't superheros, we are humans, working hard to better life, but we face challenges like everyone else with chronic illness/chronic pain.

I'm sure it doesn't surprise you I would find it important to comment here, this crossover and connection between chronic pain and depression is my greatest passion as far as health activism goes. Our mental health is obviously going to be affected by our chronic illness in some manner and that can be dynamic and changing. When we need support and are feeling really low, it is certainly okay to tell the world about it!

It is such a gift to have other Health Activists such as yourself out there to support HA's in the community and just a reminder to you, there are people here for you if you ever need it, too! =)

Comment by Ellen S on November 20, 2010 at 9:57pm
Amy - I so hoped you'd see this post and tell me your thoughts! :) Thank you. This too is a passion of mine. I have never quite gotten the hang of finding the happy balance between the two sides yet, but I am trying. Sometimes I am afraid that when that raw emotion hits, I might say the wrong thing. Yet I am so very aware how I am touched when others share their human side, warts and all. That said, I will continue to strive toward finding that perfect harmony, and I love it that you would be willing to help me :) ((Hugs))

Wednesday, November 17, 2010

Love Beats Hate - a blogging event

While people sometimes use the internet to spread hateful messages
about marginalized groups, including people with chronic illnesses, we
want to show that love is more powerful than hate.
The Love Beats Hate blogging event (November 17, 2010) is an opportunity to share the ways
in which you've seen the support of online communities enrich your life
or the lives of others.

Once upon a time...

... there was a little family. There was a Daddy, a Mommy, and 2 little children - a boy and a girl. The Mommy was very sick. She had a medical condition that made her hurt, and it made her tired.

The Daddy tried very hard to make the Mommy feel better. Sometimes he got mad, and sometimes he was sad, but he always tried. The little boy and the little girl couldn't remember a time when their Mommy wasn't sick. They knew she was different, even if they weren't really sure why.

One day, the Mommy went very far away to a doctor, and when she came back she was very quiet.

"What's wrong Mommy? Why are you crying?" said the little girl as she softly placed the palm of one hand on her mother's cheek, and the other under her chin. The mother looked at her little girl's eyes and saw that she was crying too.

"Why do you ask me that, sweetheart?" she replied.

"Because your eyes look wet and your face is so sad."

"I'm sad because the doctor said he couldn't help me anymore, Baby."

"Can I help you Mommy? Can I help make you feel better?"

The Mommy thought about it for a while. She pulled down the corner of the blanket on the bed where she was lying down and said "Climb in here with me so I can hug you, and you can keep me company then."

The Mommy felt the warmth of her daughter's body next to her, and smelled her soft baby scented hair and her sweet little girl breath, and she did feel better.

"I love you Mommy. I love you so-o-o-o-o-o-o-o much. I love the whole wurl-d."

Many years passed, and the little girl grew up. Like her brother, she got sick too. This made the mother very sad. One day the little girl was in her bed with the lights turned off and the mother could hear her softly crying into her pillow.

"Baby, what's wrong?" she said.

"I don't feel well." said the daughter. But the mother already knew. She knew that her son and daughter had the same disease that she had, and knowing that made her feel very, very sad.

"What can I do to make you feel better?" asked the mom.

"Would you come and lay with me for a little bit until I fall asleep?"

The mother crawled under the covers. She held her daughter and softly stroked her face. At first she wanted to cry with sadness, but she didn't. When her almost grown-up girl had fallen asleep, she climbed out of bed and went to the computer in the next room. She sat there a few moments, thinking. She had given up trying to help herself, but she knew she had to find help now that her children were sick too.

The mother was afraid. She didn't know where to begin or who to talk to. She found a group of people with the same disease, and she began to write them. The people in the group were kind and they sent her many virtual ((hugs)). Best of all, the people helped her learn about her disease so she could go to their doctors and fight to get better.

Sometimes the doctors didn't like the mom very much. Sometimes friends and family hurt the mom because they didn't understand. But the mom and the children began to get better.

The mother was so thankful to the people that helped her family, that she decided to help too. She began working in many online communities to help other patients understand and manage their diseases and learn
to work with their doctors to get the very best treatments.

Pretty soon there were many friends the mother could talk to any time she wanted, just by going to her computer. She even got to hug and thank some of them in person. She had lost many friends because of her
disease, but she had found many, many more for the same reason.

One day the almost grown-up little girl hugged her mommy and kissed her on the cheek.

"Thank you for not giving up" she said.
Comment by Betsy B on November 17, 2010 at 10:28pm
Wow, Ellen - very powerful. I love this. :)
Comment by Janeen on November 18, 2010 at 9:00am
Wonderful post Ellen! It brings tears to my eyes. Thanks so much for sharing. You can read my Love Beats Hate post here.
Comment by Ellen S on November 18, 2010 at 11:11am
Thank you guys for responding here. It really does mean a lot to me. I always get a lot of really great Facebook responses too, so I'll try to add them here in a few days. It seems my little story strikes a chord with many....
Comment by Winnyninnypoopoo on November 19, 2010 at 12:39pm
What a sweet story, but also captures what it means to pass on an inherited condition, so a definite sad side. Made me cry, but in a good way!!!
Comment by Betsy B on November 19, 2010 at 5:49pm
My Love Beats Hate post is here.
Comment by Amy K on November 19, 2010 at 11:02pm
I didn't get my love beats hate post written, but I am so thankful for voices such as yours...what beautiful story and post. I look forward to reading more of what people have shared.
Thank you for your beautiful heart, Ellen!

Tuesday, November 16, 2010

Factor H, autoimmunity and atypical Hemolytic Uremic Syndrome

The tone of the voice on the phone told me something was wrong. He calmly told me a family member had been taken to the ER the night before and was very sick. His calmness was deceitful. I had no idea someone so close to me may have been dying.

The diagnosis for the time being was Dengue Fever, although tests later would come up negative for the hemorrhagic disease that is similar to Ebola. The presence of symptoms made the diagnosis 'inconclusive'. It wasn't until, after a phone call to my family member about it several years afterward, I later sat up straight in bed at 11:00 at night with what my hubs called a 'House' moment.

What the doctors ignored at the time was the dose of quinine my family member had taken for spasms just hours prior to her admission to the hospital. What was unknown at the time was that my family carries a genetic marker that can create a problem with the complement system - part of our immune system - that can be involved in not only autoimmunity, but a rare syndrome called atypical hemolytic uremic syndrome (HUS) which causes all the mysterious symptoms she had which were stupefying her doctors. The trigger for this syndrome can be any of several things including specific medications... especially quinine.

The genetic anomaly is a defect in the complement factor H gene (CFH). I knew about this gene because genetic testing showed that I am homozygous for the defect - this means I have 2 copies of the defective gene. The gene is responsible for regulating how the complement system works, and a defect in it can mean either a hidden, or overtly obvious defective complement system. Either way, the genetic goof has an extremely high correlation with US as well as autoimmunity and the eye condition macular degeneration. The healthy gene tells the complement system (ie immune system) not to attack the body's own tissue (self). When the gene malfunctions, little or nothing is there to tell the immune system not to attack self, and a chronic inflammatory autoimmune condition results.

When a person with this defect takes the medicine (or any food or drink that contains) quinine, the body can create antibodies against the quinine which has attached itself onto cells. The immune system begins a vicious attack and those cells are destroyed. In my family member's case, this meant many of her organs began to fail starting with her kidneys, and she began to spontaneously bleed - - everywhere. Eyes, nose, mouth bled freely. Under the skin of most of her body was bleeding, turning into huge purple and red bruises. She looked like she'd been in a horrible car accident or beaten within an inch of her life. She vomited "cow pies" of blood, and urinated copious amounts of blood. The pain was so intense she screamed day and night for them to "put me out", until she was too exhausted to cry out anymore. She had neurological symptoms that continue today. Because they didn't know what was happening, the doctors didn't know how to treat it and essentially stood by, ordered tests and watched.

Thankfully, she slowly began to recover, although autoimmunity remains a challenge. They never had an official answer why she got sick with such unique and dangerous symptoms, and because Dengue Fever had been mentioned, she can no longer make her yearly pilgrimage to a tropical place each winter for fear of the disease. She never completely recovered, but she is better.

Had she tested positive for HUS or had it been recognized as such, she could have received treatment that would have shut down her complement system. Years ago, plasma therapy was used to replace the missing factor H. The drug Eculizumab is the suggested treatment at this time, for serious cases or those in
which simple withdrawal of an offending medication is insufficient or plasma therapy is not indicated. Red cell transfusions may have been useful to counter the anemia caused by the destruction of her blood cells and excessive bleeding.

Unfortunately, because testing for HUS didn't occur within a reasonable time of her disease, she will likely never have a concrete answer if that was the cause or not. Antibodies can stay in the bloodstream after the withdrawal of the offending drug for days, week, months... sometimes a year or two. The literature suggests a 're-challenge' of the medicine, but in her case this would likely prove fatal. It has been about 5 years since her illness. We do now know that she carries the genetic defect. When she asked her doctor about it, his answer was "Your family seems to have some strange and unique things going on."

I tell this story because, as autoimmune patients, we need to be aware that there are sometimes very dangerous things that can result from our condition that may be unexpected. Not everyone with autoimmunity is going to have the CFH defective gene or genes, but it is very likely that many do and are not aware of it. It is wise to be aware of HUS and factor H because eliminating triggers can help to prevent a recurrence. Quinine, for example, although no longer sold in the US as a drug, it is available and found in commercially sold foods and drinks. Tonic water is a known source of quinine and is often used by patients with nightly leg cramps. Other triggers for HUS include:

contraceptive pills and estrogens
varicella-zoster virus, strep or other virus
pregnancy and/or delivery
combined methylmalonic aciduria and homocystinuria (a vitamin B12 metabolism disorder)
organ transplantation
anti-platelet agents
infection (cold, flu, etc)
inflammatory disorders

Anyone who is suspected of having an attack of aHUS should ask about testing for the most updated list of affected genes: CFH, CFI, MCP, C3, CFB. If results are negative, than a Factor H Immune study is next.

For additional reading:

What is the Complement system?
Hemolysis and renal failure in a toddler
Gene Reviews
Oxford Journals

Comment by Rose7 on November 29, 2010 at 1:22pm
Hi Ellen!
Thanks again! So much food for thought! I hope your relative continues in peace.

When I was dx with ms, my doctor said my children might have the 'weak link'.
That was in 1976. Years later my sister was having trouble walking and the doc refused to consider ms. Finally after 25 yrs she is dx and suffers from progressive ms. Could this have been prevented, maybe not, but very possibly so!
I had one more child after I was dx, an 'accident', did consider abortion, but had beautiful boy (he died at 28 from SDS).
Currently I listen to a christian radio station. One of the dj's was dx with ms a few years ago. He has since produced three (3) children. WHY???

My rant for the day...Keep up the good work!
Comment by Ellen S on December 1, 2010 at 12:24pm
It is a slippery slope, knowing that we carry DNA mutations that 'could' potentially hurt our children. The thing is, most of these mutations have variable penetrance - this means that usually there are other factors involved that must combine with that mutation to create the problem. For one person it may take very little to trigger the disease. For others, they may never get it no matter how many triggers they have.

In the case of the CHS mutation my family member and I have, there are dominant and recessive problems that can result, and variable penetrance in many of them. One simply never knows until and if it hits.

DNA holds many answers for us, but just as many questions - no, MORE! There is no perfect person. We all carry mutations. Some of us know about them, others of us don't. Do we keep from having children because something "might" happen? That's a decision everyone has to make on their own. There is a breast cancer gene. Many who may carry it are getting testing and then are faced with several terrible decisions if it comes up positive. They know that gene doesn't mean they or their children will get the disease, but many choose prophylactic mastectomy and no children, while others take the watchful waiting approach to a normal life. Is either one wrong or right? My crystal ball is a bit cloudy on this myself, so I can't judge anyone else's decisions, only my own. I asked the question "Was it wrong to have my children? Having babies with genetic disease" in a recent blog post.

Our children will have to make their own choices re: whether to have babies of their own. Genetic testing helps them to make an informed decision, but it can also bring many painful questions that can only be answered by time. Your DNA is only half of what your child receives. For this reason many folks choose not to know what their DNA is telling them. Is that right, or wrong? I can't say. I know that this testing was important for me. It has led to answers for myself and my family. I plan to offer it to my kids, but it's up to them whether they will choose it or not, or what they will do with the answers once they get them.

Monday, November 15, 2010

What is the Complement system?

The complement system is a part of our immune system. They 'complement' the work of the antibodies. The immune system's job is to keep our bodies safe from foreign invaders like viruses and bacteria, and from homegrown terrorists like cancer cells. The immune system is our country's (body) army.

The complement system is part of the innate immune system and is made mostly in the liver. This means that the body is born with this part of the immune system which is encoded into our DNA. It needs no education in the thymus and doesn't need to be exposed to a bacteria in order for it to work. It is also not part of borrowed immunity. The complement system has great potential to be very damaging to the body, so must be tightly regulated. It's made up of about 30 proteins that circulate within plasma.

Testing the body's complement system is something that is frequently done to help doctors diagnose autoimmune disease. There are many parts to the complement system, and it works in a cascade. It is something like a factory with an assembly line. Each station or part, adds onto or subtracts from the part before it, so if something goes wrong anywhere down the line, the next station can't do its work properly. When autoimmunity occurs, it "uses up" certain parts of the complement system and those deficiencies can be tested and monitored by the complement test panel. Where the deficiency is found gives the doctor a clue what might be happening to the immune system and which autoimmune disease you have.

The job of the complement system is twofold - phagocyte signaling that a cell needs to be removed from the body, and lysing (cell destruction by bursting).

There are 3 basic pathways to the complement system - the classic, the alternative, and lectin pathways. Each are triggered and inhibited by different mechanisms. They each target a specific type of invader.

The complement system is activated by antigen associated antibodies - something that is 'not self' is sensed and the complement system is roused into action. Part of the complement system's job is to create helpful inflammation.

The system is also regulated by special proteins called complement control proteins. Without these regulations to control the immune response of the complement system, inflammation would run amok and our immune system would destroy us.

The complement system is thought to be involved in many disease processes including:

Arthritis (various forms)
Atypical hemolytic uremic syndrome
Autoimmune heart disease
Decompression sickness (the bends)
Hereditary angioedema
Inflammatory Bowel Disease
Lupus (SLE)
Macular degeneration
Transplant (organ) rejection

Certain diseases like HIV manipulate the complement system causing further damage to the body.

To read the rest of the series:

12 things about your immune system your doctor didn't tell you
Your thymus - the educator of your immune system
Comment by Rose7 on November 28, 2010 at 4:18am
Thanks Ellen for breaking it down to regular people speak. Very informative!
Comment by Ellen S on November 29, 2010 at 12:26pm
Thanks for the comment Rose7. The immune system is so terribly complicated isn't it?! It takes me quite a while to break it all down, but feedback like this is really vital so I know I did it right :) My goal is to do a complete enough job that the articles are shareable within autoimmune communities. There is very little comprehensive information out there for patients... probably because of the complexity of the immune system itself. What I don't understand is, why this is so. Why aren't there better places to go to learn about our immune systems, one little bite at a time?? Do you know of any others?

Friday, November 12, 2010

Public comment needed now on new graphic warnings for cigarettes

Health Activists - make a REAL, tangible difference today:

The Family Smoking Prevention and Tobacco Control Act (Tobacco Control Act) mandates that new larger and more visible, graphic warnings are to be used on cigarette packaging. The FDA answered this by proposing a new rule called Required Warnings for Cigarette Packages and Advertisements, which would result in nine new warning messages complete with full color graphic images emphasizing the damage that cigarette smoke does to the health of those who come into contact with it. Here are a few of the examples:

WARNING: Cigarettes cause cancer
WARNING: Smoking is addictive
WARNING: Cigarettes cause fatal lung disease
WARNING: Smoking during pregnancy can harm your baby
The FDA has until June 2011 to finalize the regulations, and the new packaging rules will take effect 15 weeks later.

The proposed rule would result in these graphics being placed in the upper 50% portion of each container, both front and back.

What do you think of the new proposed rules? What were your reactions when you viewed the graphics? Do you think they are too extreme - too graphic and detailed? Would you change anything?

The FDA needs to hear what you think on this proposed rule from Friday November 12, 2010 through Tuesday, January 11, 2011. Now is your chance to do something very quick, very easy, and very tangible with your health activism by choosing one of the methods presented below. According to the official government website, here's how:

1. Go to and insert docket number FDA-2010-N-0568 into the “search” box and follow the prompts.

2. Send a fax, with your comments, to 301-827-6870.

3. Mail/Hand delivery/Courier (for paper, disk, or CD-ROM submissions) to the Division of Dockets Management (HFA-305), Food and Drug
Administration, 5630 Fishers Lane, Room 1061, Rockville, MD 20852.

Be sure that all comments are identified by Docket ID No. FDA-2010-N-0568. You only need to choose one method to send your comments. I highly recommend No. 3 for highest impact, but when time is limited, No. 1 offers the easiest and quickest method. At the time of this writing, the docket was not yet live, but it should be starting November 12, so don't delay!

Yes, it is that easy, you really can make a difference in just a few moments time.

When you're done, don't forget to:

*Share this on Twitter or Facebook
*Email this to friends and family
Comment by Amy K on November 13, 2010 at 10:24pm
Wow, Ellen, did you look at the pdf with all of the images that go with these warnings? Some of them are quite graphic and disturbing. I honestly don't know how to react. I am all for awareness and letting people know about the health risks of smoking, but some of these images push the limit for me a bit. I'm not sure why. I am a non-smoker (I did smoke previously, many years ago) and I want people to understand the reality of what the health risks are... but I am put off by some of the images, like, it makes me feel ill. While I try to sort out my own feelings, I am happy that you brought this to our attention and gave us this easy way to share our voices. I definitely appreciate the opportunity to voice my opinion and make a difference!
Comment by Amy K on November 13, 2010 at 10:27pm
I see now that you were asking for input about the graphics and that you must have looked at them. I would love to hear your thoughts on them if you want to share. I am upset by them, it's definitely a scare tactic, and although it drives the messages home, it feels as if some of the images cross some imaginary line. Confused.
Comment by Ellen S on November 13, 2010 at 10:40pm
Amy, I am with you in that parts of me are really torn about this. On one hand, cancer is graphic. Hurting your baby is a graphic reality. Hurting those around you is also a reality, and turning our heads doesn't make the brutal reality any different. That being said, I can't help but think that the pictures on those cigarette packages might be one way to get people NOT to buy them. Can you imagine walking around carrying a pack of cigarettes and pulling one out from a package that has one of those graphics printed on them? It would sure make me stop and think twice before buying one. Which one should I pick? Which one doesn't make me look like an awful person for smoking them?

So, all that seems good on the outside, but what about kids watching their parents pulling cigarettes from these packages? What are we doing to them as they watch their loved ones ignoring those warnings?

Just because those are the realities of smoking, does that mean it's okay to use them to
scare people straight'?

I'm not a fan of scare tactics, but on the other hand, it is reality. Putting our heads in the sand isn't going to change that reality.

Like you, I'm confused how I feel. I'm really curious how others think when they see those images. Is it okay to scare people into quitting smoking?

Oh, for one... I sure see the old cigarette cases of the 1920's thru the 1960's gaining great popularity again...
Comment by Ellen S on November 13, 2010 at 10:43pm
*oops* I should have mentioned that I am now and have always been a non-smoker. I'm highly allergic to cigarette smoke. I also watched my grandfather die from emphysema when I was 10. I definitely have an opinion about smoking and second hand smoke etc. So, maybe that colors my opinion on the graphics? Hmmm.
Comment by Amy K on November 13, 2010 at 10:57pm
I think we all will have some kind of emotional response to the graphics. I grew up in a home with smokers until my very late teens. I didn't like being trapped in smoke and I am certain that it caused some health issues for me. I was told I am allergic to smoke as well, but that was so long ago, I don't recall the details (I was a child). I watched my grandmother die of lung cancer, she was a non-smoker, but no matter, it was awful. But still, for several years, I smoked, because once I started I was hooked. Thank goodness I have been rid of it now for many years.

I can't imagine how dreadful it would be to see your parents ignore a label such as the ones proposed here. It may be a very brutal reality, but I think these images qualify as a scare tactic to me. On the other hand, maybe young teens won't pick up the habit if they have to look at a corpse every time they pull a cigarette out of its package. Ugh. Our world feels like it is filled with bad or worse options anymore, we have to pick the lesser of two evils... which will it be? Still debating here.

And yes, I can see how those fancy cigarette cases could make quite a comeback with labels like this. Then what kind of good will the labels be doing, they will be in the trash? Ugh.
Comment by leejcaroll on November 13, 2010 at 11:28pm
Thanks for the links and info. I am a non smoker, grew up with all smokers, who had very difficult time quitting. I found some of the graphics confusing in that a man in coffin for instance or the cemetary could be relating to many things not smoking, per se. The one with bad teeth and sore reminded me of a meth ad that is out and again not specific to smoking. Some I felt, doc looking at xray for instance, were too neutral appearing. I felt that many would be appropriate and for me were not too graphic.
Thanks for this and I will let my folks at womeninpainawareness know about it.
Comment by Ellen S on November 13, 2010 at 11:50pm
Thanks so much Lee. I sure would be interested to see what they think about them. Why don't you write us back with a link to your discussion?!

Tuesday, November 9, 2010

Writer's Block and Blog Prompts

Sometimes, no matter how passionate we are about a health subject, writers block hits. It's like the flu. There's no good time to have it. It always seems to hit at the worst possible times. It's miserable when you're suffering from it, and sometimes it feels like all you can do is ride it out. One day you wake up and *pow!* something hits you and off you go writing like nothing ever happened.

I can't explain writers block, but I have run across a few things that can help. One of them is called a Prompt.

Simply put, a prompt is something - a word, a question, a sentence, whatever - that takes you outside your normal box so you feel inspired to write something. It's like an assignment, but with flair. Sometimes the strangest things can turn into the most inspiring posts! Here are some examples of simple prompts:

* Finish this sentence and write about it: "Just because ________ doesn't mean ______"
* Write about a First.
* Write a How To post

Where do I find prompts?

Many writers workshop groups have daily or weekly prompts that can help you out. There are literally thousands of them on the web. I enjoy Bloggy Moms myself, but I've decided to add a weekly prompt here on WEGO Health and invite you to join me! Each Monday I'll add a prompt on the community page in the General Forum and in the Health Bloggers group. If you choose to use the prompt, be sure and reply with the link to your blog post so we can all read it! :) Here is this week's blog prompt.

Other blogs. Go outside your comfort level and check out a blog that has nothing at all to do with your passionate subject. What are they writing about? How can you tweak it to apply to your Health Activism?

Blog carnivals. Check out some of the blog carnivals out there. Even those that aren't patient related can be helpful to prompt an idea out of your brain. Don't forget to enter WEGO Health's monthly blog/vlog carnival too!

What are some of the ways you get over Writer's Block? If you use prompts, where do you find them? What are some of the best prompts you've ever used?
Comment by yumers on November 24, 2010 at 6:29pm
Their advice may not all be relevant, but they sure have a lot of them.
Comment by Ellen S on November 26, 2010 at 10:22am
Hey yumers, these are great! Thank you so much for sharing them. If you run across any others, I hope you'll think of this post and share them here too :)

Monday, November 8, 2010

Your Thymus - The Educator Of Your Immune System

In order to understand our autoimmunity, we must first understand how our immune system works. This is post number two in a series. You can find links to the rest of the series at the end of this blog entry.

Our immune system is our body's defense against harmful invaders. These bacteria, viruses and other foreign bodies and cells hurt our bodies. You can think of your immune system as an internal army waging war against foreign invaders and protecting their home country (our body). They also are designed to protect against our own bodies abnormal cells that have betrayed us, like cancer cells - our own homegrown terrorists. There are generals and soldiers. Generals tell the soldiers what to do and the soldiers act accordingly.

Each person has three types of immunity - innate immunity you're born with, adaptive immunity that develops throughout our lives, and passive immunity which is 'borrowed' from another source.

Adaptive immunity is the slowest to respond because it involves an education of the immune system. The army must 'learn' the difference between good cells and bad cells, and how to act accordingly. Their education has phases that resemble the education you got growing up: Grade school, Jr High and High school, College, and Graduate school.

The education of the adaptive immune system begins in an organ called the Thymus gland. When you were an embryo, special tissue migrated from near your brain, down your neck and into your chest. During this migration, parts of this clump of tissue specialized into other glands (thyroid, parathyroid, etc), broke off and stayed in their current locations.

The thymus gland is now located inside your chest, just below your thyroid gland. If you find the center of the top of your breast bone, underneath this part of your thorax is where it is usually located. The thymus gland is where three groups of immune cells take their grade school through high school education. Because these groups of cells are educated in the thymus, they are called T-cells (T - for thymus).

When you are born, your thymus is large and grows until you are around 2 yrs of age. It takes years to educate the immune system, and when that has been accomplished at puberty, the gland shrinks. It continues to shrink throughout the rest of our lives. It is this shrinking that is thought to be responsible for decreased immunity that the elderly experience.

The job of the thymus (teacher) is to make sure that our army is effective in eliminating foreign cells without hurting our own healthy cells. As the teacher becomes weaker, our army has a greater chance of forgetting how to recognize our own cells. This is why the attacks on our own tissue become stronger when we age - called the aging paradox.

The three groups of cells educated in the thymus are:

* Helper T-cells - help other immune cells do their jobs
* Suppressor T-cells - control the immune system so they don't overreact
* Cytotoxic T-lymphocytes - are taught in the thymus how to recognize markers of self, and markers of invaders (non-self). Their job is to act directly on the bad cells. More than one marker on a cell signifies that it is a cell from the body that has been damaged.

If the teacher is incompetent, the students are not as well prepared to recognize the signals that they should be receiving in their environment to protect the home country (body - self). We must nourish the teacher with an appropriate diet and if needed, supplementation to keep it healthy so it will continue to properly educate its students the T-cells. Still, things can and do go awry, and T-cells can be under-educated or forget how to properly do their jobs. Sometimes there can be too few T-cells to do their jobs properly. All this can be a result of problems within the thymus.

For additional reading:

Part 1: 12 things about your immune system your doctor didn't tell you

Thursday, November 4, 2010

A Physician's 10 Commandments

The Holy Bible's Ten Commandments were given by God to Moses, so he could teach them to the human race and they would be able to live better lives. It is the first and most basic moral code for us - mere mortals.

So, here I am. A sometimes not-so-patient patient, looking for the perfect doctor. As someone who is chronically ill, what compass do I want my new doctor to follow? It's not so hard. Let's see if I can sum the basics up in 10 easy points:

#1 Thou shalt have no other patients before me. When you are in my room, concentrate on me. Thou shalt spend whatever time is necessary to complete the task at hand. Thou shalt have focus. For this precious few moments, treat me thus - as if I am your only patient. Read my history with care, and ask questions about it. Do not interrupt me. Respect me and understand that I am the expert of my body. Use that to our advantage for best results. Thou shalt keep in good contact with me. Be timely in sending records, ordering labs and giving results, and replying to messages, for my time shalt be valuable also.

#2 Thou shalt not create in your mind, the version of the patient you'd like to see, but be content with the patient that is before you - flaws and all. Thou shalt check thy ego at the door, for thou art human. I am human. You shall know thy textbooks, but I shall know my body and my symptoms and my disease, for it never leaves me. I will listen to you, so you shall listen to me and we shall conquer. For we can be a team - I'm willing, but thou must be willing also. Together we can be extraordinary!

#3 Thou shalt not speak of me or my situation in a derogatory manner. Thou may think it amusing. Thou may think it relieves stress, but in doing thus thou hast created a negative atmosphere toward me, my family, and my condition. Yea - every time thou speaks ill of a patient no matter the reason, thou shalt ingrain those negative feelings in thy mind and those minds of the staff with which you work. Surely this shall show in thy attitude and the attitudes of thy staff. Verily, it also will be heard by other patients and their families and thy staff, who will wonder what you are saying behind their backs as well. Beware, as stress and distrust is created thusly. In the words of Bambi's mother: "If you can't say anything nice, don't say anything at all."

#4 Thou shalt be available to patients by providing them staff available to help them, as well as the most up to date, easily accessible methods of communication possible, so when thee must take necessary and healthy time for thy well being and that of thy family, thy patients will not be left by the roadside - sick, hurting, scared and confused.

#5 Thou shalt keep up to date in thy field of expertise. Thou shalt set aside time to read thy journals and attend continuing education so thou shant order antiquated lab tests or prescribe outdated medication protocols. Because thou art observing Commandment #4 this shall be easy. Thou shalt acknowledge that the availability of information online means thy patients will try to be proactive and bring thee journal articles or ideas about their treatment/disease of which thee may not be familiar, and thee shall practice due diligence in reviewing material thusly before tossing it in the trash or breaking Commandment #3.

#6 Thou shalt always do thy very best for each and every patient, even if that means making late night calls or extra time researching a condition, or scheduling fewer appointments for the day so thy patients receive the very best thee can offer them. Thou shall treat based on how thy patient feels, seeking more clues when the labs seem "normal", remembering there is a difference between designated "normals" and thy patient's optimal. Thou shalt give carefully researched and timely referrals when necessary. Thou shalt at all times remember that "do no harm" applies to the patient's mental, emotional, and physical well-being.

#7 Thou shalt not use cookbook medicine. Thou shalt glean new ideas and patient care by discussing with others, including physicians of thy specialty and outside thy specialty, pharmacists, psychologists, caretakers, etc. Thou wilt base thy treatments and diagnosis based on what the patient feels and desires.

#8 Thou shall not steal from patients by ordering unnecessary testing, unnecessary office visits, treatments you doubt will be successful, expensive drugs when a less expensive alternative will suffice, selling at exhorbitant costs those products which can be purchased elsewhere for less, or referring a patient thou art capable of treating. Thou shalt consider thy patients also as consumers and clients and continue the diligence you used while initially building thy practice.

#9 Thou shalt not give up. Thou shalt dig however long 'tis necessary to diagnose and properly treat a mysterious symptom or ailment, always seeking out the root cause for treatment. Thou shalt never tell a patient they are hopeless or there is nothing more you can do for them. Thou shalt dig just as hard for proof for a diagnosis of a psychologic/psychogenic disorder before placing that scarlet letter on the person of your patient. Thou shalt acknowledge that pain can be deadly and thou shalt treat it accordingly while looking for its source. Thou shalt realize there are other physicians who may be at times more qualified to diagnose and treat thy patient and thee shall refer them accordingly, always taking into consideration that true psychogenic disorders are comparatively rare. Thou shalt consider complementary and integrative healing. Thou shalt guide me by educating me on my disease and its impact on my life, and encouraging me to be proactive... or employing someone who can.

#10 Thou shalt be a learned friend - Despite thy time constraints (which can be altered), know thy patients well and treat them with respect and trust so they shalt regard you as beloved amongst your peers, for thy white coat does not impress us. Thus were the healers of generations past held with reverence and appreciation. In so knowing thy patients, thee will make better and more appropriate judgments for them, for they are much more than their disease, but human souls in need of healing and compassion.

Okay, so this is perhaps a serious subject handled in a not-so-serious way. There are so many other things I could have added.

What do you think? What did I miss? Feel free to give me your ideas here or in this conversation.
Comment by Ellen S on November 4, 2010 at 3:11pm

Thank you Anthony! You know, my Facebook pal Denise added to the post and made me laugh so hard. She said:

"I LOVE THIS!!! Though Shall NOT Make us WEAR PAPER ROBES...or ANYTHING that Says PEEK-A-BOO either!!!
Comment by SickMomma on November 4, 2010 at 4:55pm

Fabulous post, Ellen!! So hilarious, and yet, sadly, so truly on the mark.
Comment by Debby on November 4, 2010 at 6:37pm

Dear Ellen. I know that this comes from the heart, from a place of pain, a place where you are searching for acknowledgeable, understanding, compassion and to be treated with respect. As I continued to read through the commandments, I felt the burden heavier and heavier upon the physician. My thought, if I were the doctor, being this tells me to take fewer patients, leaving many stranded. Usually, I am on the patient's side, and certainly we should not feel belittled, taken advantage of (financially, time-wise), in a partnership relation where both search for potential answers to problems, but why did this feel so one-sided?

Like, sure, go take time off with your family, rest up, but during that time you can study and bone-up on all the latest research; and oh, by-the-way, hire some staff to take care of me too. And, while you're at it with the telephone cue of patient calls, please spend more time getting back to me ASAP.

You know, as a person suffering from an illness, how you can take hours upon hours researching and reading; well, something tells me doctors are busy 'caring' for patients and don't always have the opportunity to spend on the internet, etc.

just saying....

all the best.
Comment by Ellen S on November 4, 2010 at 11:15pm

And my FB friend Michelle adds:

"I have been chewing on this all day - finally came up with what I wanted to add - I AM AN EDUCATED PATIENT DO NOT LET THIS THREATEN YOU - it irritates me to no end"
Comment by Debby on November 4, 2010 at 11:19pm

What irritates you?
Comment by Ellen S on November 4, 2010 at 11:49pm

*Sorry* Debbie, that was part of what Michelle said. She is irritated because her doctor is threatened by her knowledge of her condition, and that irritates her.
Comment by Debby on November 5, 2010 at 12:07am

The patient must be a good advocate for their own welfare. If the physician is not willing to listen and learn, then may be time for new doctor.
Comment by Ellen S on November 5, 2010 at 1:32am


Agreed. Hence, the reason for this semi tongue-in-cheek list of 'commandments'.

Tell me, all other things being equal, which doctor would you choose for your own - one that follows these ten commandments, or one who doesn't?

Thanks for the thought provoking comment. This post actually was written mostly as a result of years of experience watching patients struggle each day because they need more from their doctors and aren't getting it. It's so difficult to hear about patients needless suffering and not be able to help. I've even seen a few die as a result. For me, that's the toughest part about being a Health Activist.

This post is of course one-sided. It is from the perspective of a chronically ill patient (read: sick every day) looking for the "perfect" doctor. There are few of them out there, but shouldn't these all be things one would want to strive for? Thankfully I can say that I have had 3 doctors on which I actually based this post, each manage the fine balance it takes to be effective as physicians and maintain a life of their own. They believe in and follow these 'commandments'. None of them are broke, and all of them that I know of following these 'commandments' are happier than any of the doctors I have seen who don't. I would encourage you to read each 'commandment' number separately, as each of them do contain parts that I think address the concerns you mentioned, and are perhaps not quite as one sided as one might expect from the bolded first sentences.

I have seen similar posts made by physicians that paint a picture of the 'perfect' patient as someone mighty hard for most of us to live up to also. I have posted some of my own as well. That doesn't mean they're not right however, it just means we have some work to do. Unless you're very lucky, health does not equal being passive.

Yes, the burden is high on the individual physician. It is also high on the patient. Our lives are forever altered by the course we take with our chronic health conditions. When a mistake is made we cannot walk away from it. We live with those mistakes every day for the rest of our lives. Some people die because of them. This is why it's so vitally important for us as patients to be responsible for our own health care and be proactive in it. Part of our jobs as Health Activists as I see it, is to encourage that. The burden shouldn't be all on our doctors, that's not fair to them. It's our lives, not theirs. The burden is also high on physicians as a whole because there are already so few doctors in ratio to the patients that need them. Please see this post
Staggering physician/patient ratio for the United States and the ch...

I'm not suggesting patients should be be left out in the cold. Does this mean we should be okay with a lesser quality of care though?

I think the problem is how we are thinking about this. Of course the burden on our doctors is much too high. No wonder they are so stressed and soon become jaded. It doesn't help that there are so many 'bad' patients out there either. However, the trouble is not that we are asking too much of our physicians, the problem is that there are too few doctors out there able to share the load of what patients need. On one hand, doctors often chide us and even shame us for looking up our own information, yet they they become frustrated or don't take the time to give it to us when we ask for it. As a patient or a doctor, you can't have it both ways. I have no problem with a doctor handing me printouts telling me to read up on it and call with questions, or one that gives a few helpful websites, or refers me to a support group. All are ways to disseminate information - it's just another way of educating the patient. But to leave patients empty-handed and expecting us to do as we are told without question is unrealistic and not good medicine/healing. It's certainly not what the 'perfect' doctor would do.

My perspective is different than many. I'm old enough to remember what it was like to visit the town doctor. You know the type - they deliver you and care for you your whole life - or theirs. They live around the corner and knew you by first name. They gave you a graduation gift, and a wedding gift when they watched you get married. They took whatever time was necessary for you during a visit, and planned accordingly. The bottom line was not the bottom line. Their patients were. Our doctors were respected for their knowledge and their compassion, not because they wore a white coat. They encouraged us to take an active part in our health, and helped us when we did. They asked questions and literally listened. Most of them died still practicing this art. (A local doctor passed away recently. He worked out of his home and charged $35 for an office visit - if you could afford it.) Somehow, somewhere along the way we began to assume that health care was like taking our cars in for a tune-up, and that doctors are not to be questioned or treated like normal people. Doctors are encouraged now to remain distant from their patients. In fact I think blindly leaving our health decisions up to our doctors puts added pressure on them, not the other way around.
Comment by Debby on November 5, 2010 at 2:39am

I hear what you have to say. I've said the medical system IS broken for a long time. There are NOT enough physicians and it is because of the system they have built and refuse to change. There is a way to support educating many young people or even older compassionate educated and capable people who would love to be healers.

Unfortunately, they charge $250,000 to get training and limit the numbers intentionally. There has to be a better way even if that includes training and accepting alternative medicine as support for people in pain and with conditions that can be helped in other ways.

We have to accept the mind/body connection for one thing. Well, I took this off-topic. But, I do know where you are coming from. Being a doctor is certainly not an easy job. It has gotten much more complicated and demanding than ever before, with little support in some cases. While in others, money matters and that's it. Besides having a belief system that does not jive with some free thinkers.

I enjoyed reading your post here.
Comment by Ellen S on November 5, 2010 at 10:03am

Debby, I think we are really on the same page :) So, what do we do about it? We are, after all Health Activists, and we can use our voices...
Comment by Alicia C. Staley on November 9, 2010 at 12:17pm


Your blog post was a writing prompt for me! I think this is a great list. These are great rules to follow - as patients and physicians. Here's my post for a patient's version: A Patient's Decalogue
Comment by Debby on November 9, 2010 at 12:24pm

Hi Ellen. I do believe these stimulating discussions make us think about the issues. Each of us can only do our little part individually, which adds up as more participate. Thank you so much. #gratitude.
Comment by Ellen S on November 9, 2010 at 12:44pm

Alicia - once again you eloquently, and I must say brilliantly show in your post that there is more than one side to any issue. Your post is definitely worth the read and due consideration by anyone who is a patient - especially those suffering from chronic illness.

No matter how flat you make a pancake, it still has two sides. :)
Comment by Debby on November 9, 2010 at 12:47pm

This is for all of us. I do not see a place to enter Videos on Wego. Someone direct me.
Get up and dance! 

Love, Debby
Comment by Ellen S on November 9, 2010 at 12:49pm

This post is my entry for the Patients for a Moment blog Carnival for November hosted by Health Activist SickMomma. The topic is: What do you look for in a doctor?

Come and join me - write your own blog post then let us know where we can go to find it!
Comment by Ellen S on November 9, 2010 at 12:57pm

Debby - I love you! I use that saying a lot, and now it's going to make me smile every time I say it! Thank you for putting the video here - I grinned from ear to ear, and now I'm so durned hungry for pancakes I'm going to make some for lunch, LOL!! Oh yes, I'm a butter and pure maple syrup girl... if there's no strawberries and whipped cream to be had :)
Comment by Amy K on November 9, 2010 at 3:41pm

This post truly describes the "perfect" physician. I love how Alicia has counter-balanced it with her post. And I love how you are so good at expressing the needs and desires of the chronically ill patient.
You all have said a lot, I'm afraid I don't have great words to share in response, but I really enjoyed the post. Thanks Ellen!
Comment by epatientGR on March 18, 2011 at 4:47pm

This discussion thread comes were timely for me, as I finish reading "how doctors think" by Dr. Jerome Groopman. It's a phantastic book, that I heartily suggest to all health activists to read, because it sheds light into the practice of medicine and explains a lot of things. What is crucial is that reading the book, you are guided both as a doctor and as a patient to avoid all assumptions, obstacles in practising true medicine. The last chapter is devoted to what patients can do, how they should work with their doctors to help him/her come up with a good diagnosis and therapy.

You may believe it or not, most of what Ellen has written in her 10 commandements stands in "How doctors think". So, I come to think that most probably she has read the book or articles on it. I also agree with her list, even though this might mean less "productivity" for doctors.

Medicine is not a production line to process a given number of patients per shift (although this is also what happens in Greece, a doctor has to see in 5.30hrs 25-35 patients, 25 fixed appointments plus emergencies, in 10min. appointments!). Doctors need to think and consider besides the main ailment that brings in the patient, any other chronic conditions he might have. I appreciate my homeopath doctor who tells me that he will research my case and will call me up to discuss his diagnosis and proposed therary and I am suspicious of the oncologist that he hardly has a look on the mammogram and says OK without properly seen it.

So what Ellen proposes sounds all right to me.
Comment by Ellen S on March 18, 2011 at 11:40pm

Thanks so much epatientGR :)  I wish I  could say I've read the book you're talking about, but I haven't.  This just comes from personal experience - lots of it unfortunately.  I have had some really truly awesome doctors, and some really bad ones who really shouldn't even be seeing live patients.  When looking for the "perfect" doctor, you glean the best of what you see and experience and your wants when care is lacking, and voila - a list.  It seems if this doctor is writing about it too, that once again, I am pretty normal then - Yay!
Comment by epatientGR on March 19, 2011 at 7:37am

I had given the book to an orthopedic surgeon, very good friend of mine, who is director in one of the clinics of a large public orthopedic hospital. He read it in one shot, he told me. why? because he found in what Jerome Groopman writes too much of his everyday practice in the clinic. So, last week I visited him at the hospital for a foot problem and he was there with his two interns and a former intern now director of orthopedic clinic in another city.
He let the interns examine my foot, say what they thought it might be the problem, then the former intern intervened with his diagnosis of the problem, finally, my friend summed up the discussion and the course of action. We went on discussing the issues you tackle, which are also those tackled in the book. It seems that how medicine is practised is universal, there are only very little differences in how doctors think. Maybe also because most Greek doctors are trained in the anglosaxon world, differences tend to be very small...
I plan to write a post about this book and "Tracking Medicine" by Prof. J. Wennberg on practice variation. Both books address how medicine is practised and in a way they complement each other. Definitely, I will include the discussion since it reverberates the contents of the two books, and shows the understanding of the issues discussed from the side of the patient.
Have a nice week-end! We have a phantastic spring day in Athens today!

Comment by Ellen S on March 20, 2011 at 2:57pm

epatientGR,  This is all very fascinating to me.  I am so impressed that you have doctors who are taking this school of thought so seriously.  My usual experience is more that which you likely have already read here in this discussion - most doctors are so busy with the business of running their practice that they forget the patients.  "Good enough" has replaced "optimal".  Again, this isn't across the board, just the usual school of thought I've found personally.

The thing I've noticed with my doctors who were very patient focused - those that gave me the inspiration for this post in the first place - they are so much happier as people than the doctors I've had that don't want to be bothered with making our experience better.  They are more relaxed, their families are happy, their practices run like well-oiled machines.  They're never late, phone calls are always promptly returned, and encouragement is given to patients to be active in their care as well as the means and education to make that happen.  Everyone smiles, including the patients who uniformly know how lucky they are to be blessed with these doctors and do hold them in very high esteem.  When you have a doctor like this, it makes me as a patient want to try harder to go out of my way for them too.  I am more prompt and easier to get along with.  I find I can even joke around and have some quick fun with staff because we all know each other and care about each other.  Appointments go faster because I don't have to spend so much time explaining background to tell about a new issue.  My doctor already knows all this.  I wish every experience with a doctor could go according to these "rules".

I loved visiting Athens years ago.  Today I can still see the intensely blue sky that welcomed us, and have many warm thoughts about our experience there.  Enjoy your beautiful city!!!